IOM Dying in America

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1 This PDF is available from The National Academies Press at http://www.nap.edu/catalog.php?record_id=18748 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Committee on Approaching Death: Addressing Key End of Life Issues; ISBN Institute of Medicine 978-0-309-30310-1 630 pages 6 x 9 HARDBACK (2014) Visit the National Academies Press online and register for... Instant access to free PDF downloads of titles from the NATIONAL ACADEMY OF SCIENCES NATIONAL ACADEMY OF ENGINEERING INSTITUTE OF MEDICINE NATIONAL RESEARCH COUNCIL 10% off print titles Custom notification of new releases in your field of interest Special offers and discounts Distribution, posting, or copying of this PDF is strictly prohibited without written permission of the National Academies Press. Unless otherwise indicated, all materials in this PDF are copyrighted by the National Academy of Sciences. Request reprint permission for this book Copyright © National Academy of Sciences. All rights reserved.

2 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Dying in America Improving Quality and Honoring I ndividual Preferences Near the End of Life Committee on Approaching Death: Addressing Key End-of-Life Issues PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. All rights reserved.

3 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life SS 500 Fifth Street, NW Washington, DC 20001 THE NATIONAL ACADEMIES PRE NOTICE: The project that is the subject of this report was approved by the Governing Board of the awn from the councils of the National Academy National Research Council, whose members are dr of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the re port were chosen for their special competences and with regard for appropriate balance. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the authors and do not necessarily ions or agencies that provided reflect the views of the organizat support for the project. Library of Congress Cataloging-in-Publication Data Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. of Medicine, visit the IOM home page at: For more information about the Institute www.iom.edu. Copyright 2014 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, hea most all cultures and ling, and knowledge among al religions since the beginning of r ecorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving fr om ancient Greece, now held by th e Staatliche Museen in Berlin. itute of Medicine). 2014. Dying in America: Improving quality and Suggested citation: IOM (Inst honoring individual preferences near the end of life. Washington, DC: The National Academies Press. PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. All rights reserved.

4 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. All rights reserved.

5 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life The National Academy of Sciences is a private, nonprofit, self-perpetuating so ciety of distinguished scholars engaged in scientific and engineering research, dedica ted to the furtherance of science and technology and to their use for the general e Congress in 1863, the Academy has a mandate that requires it t o welfare. Upon the authority of the charter granted to it by th and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of advise the federal government on scientific Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstandi ration and in the selection of its members, sh aring ng engineers. It is autonomous in its administ with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering prog rams aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engine ers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering. ecure the services of eminent The Institute of Medicine was established in 1970 by the Na tional Academy of Sciences to s of the public. The Institute acts members of appropriate professions in the examination of policy matters pertaining to the health under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal cal care, research, a government and, upon its own initiative, to identify issues of medi nd education. Dr. Victor J. Dzau is president of the Institute of Medicine. National Research Council was organized by the National Academy of Scie nces in 1916 to associate the broad community The of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general polic ies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the Na tional Academy of Engineering in providing services to the government, the public, and the scientific and engineering communitie s. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org PREPUBLICATION COPY: UNCORRECTED PROOFS Copyright © National Academy of Sciences. All rights reserved.

6 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life COMMITTEE ON APPROACHING DEATH: ADRESSING KEY END-OF-LIFE ISSUES ( Co-Chair ), PHILIP A. PIZZO Former Dean and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology, Founding Dir ector, Stanford Distinguished Careers Institute, Stanford University, Stanford, California DAVID M. WALKER ( Co-Chair ), Former U.S. Comptroller Gene ral, Bridgeport, Connecticut PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield, Rochester, New York EDUARDO BRUERA, Professor and Chair, Department of Pa lliative Care and Rehabilitation Medicine, The University of Texas MD Anders on Cancer Center, Houston, Texas CHARLES J. FAHEY, Marie Ward Doty Professor of Aging Studies Emeritus, Fordham University, Program Officer, Milbank Memorial Fund, Syracuse, New York PAMELA S. HINDS, Director, Department of Nursing Research and Quality Outcomes, Children’s National Health System; Professor of Pediatrics, The George Washington University, Washington, DC KARLA F.C. HOLLOWAY, James B. Duke Professor of English and Professor of Law, Duke University, Durham, North Carolina Senior Policy Analyst, Office for Older Financial Protection NAOMI KARP, Americans, Consumer Bureau, Washington, DC JEAN S. KUTNER, Gordon Meiklejohn Endowed Professor of Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine; Chief Medical Officer, University of Colorado Hospital, Aurora, Colorado BERNARD LO, President, Greenwall Foundation, New York, New York SALIMAH H. MEGHANI, Associate Professor, Department of Biobehavioral Health Sciences, University of Pennsylvania School of Nursing, Philadelphia DIANE E. MEIER, Director, Center to Advance Palliative Care , Catherine Gaisman Professor of Ethics, and Professor, Department of Geriatrics and Pallia tive Medicine, The Icahn School of Medicine at Mount Sinai, New York, New York WILLIAM D. NOVELLI, Professor, McDonough School of Business, Georgetown University, Washington, DC STEPHEN G. PAUKER, Professor of Medicine and Psychiatry, Tufts University School of Medicine; Division of Clinical Decision Making, Informatics and Telemedicine, Tufts Medical Center, Boston, Massachusetts JUDITH R. PERES, Clinical Social Worker and Policy Consultant, Chevy Chase, Maryland LEONARD D. SCHAEFFER, Judge Robert Maclay Widney Chair and Professor, University of Southern California, Santa Monica President and CEO, Partners in Care W. JUNE SIMMONS, Foundation, San Fernando, California CHRISTIAN T. SINCLAIR, National Hospice Medical Director, Gentiva Hospice, Overland Park, Kansas JOAN M. TENO, Professor of Health Services, Policy, and Practice, Brown University School of Public Health, Providence, Rhode Island Professor of Social Work, Professor of Public Policy, and Director of the FERNANDO TORRES-GIL, of Public Affairs, University of California, Center for Policy Research on Aging, Luskin School Los Angeles Professor of Medicine and Nursing a nd Chief, Duke Palliative Care, Duke JAMES A. TULSKY, University, Durham, North Carolina PREPUBLICATION COPY: UNCORRECTED PROOFS v Copyright © National Academy of Sciences. All rights reserved.

7 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Study Staff ADRIENNE STITH BUTLER, Senior Program Officer Scholar-in-Residence STEPHANIE H. PINCUS, Associate Program Officer LAUREN SHERN, BRADLEY ECKERT, Research Associate THELMA COX, Administrative Assistant Consultants President and CEO, Susan G. Komen Breast Cancer Foundation JUDITH A. SALERNO, Consultant Writer VICTORIA WEISFELD, NEIL WEISFELD, Consultant Writer RONA BRIERE, Consultant Editor PREPUBLICATION COPY: UNCORRECTED PROOFS vi Copyright © National Academy of Sciences. All rights reserved.

8 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life REVIEWERS This report has been reviewed in draft form by i ndividuals chosen for their diverse perspectives and technical expertise, in accordance with procedur es approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments in making its published report as sound as possible and to ensure that the that will assist the institution idence, and responsiveness to the study charge. The report meets institutional standards for objectivity, ev review comments and draft manuscript remain confiden tial to protect the integrity of the deliberative process. We wish to thank the following indi viduals for their review of this report: Harvard Medical School Susan Block, Christine K. Cassel, National Quality Forum Myra J. Christopher, Center for Practical Bioethics Don E. Detmer, University of Virginia School of Medicine Kathleen A. Dracup, University of California, San Francisco School of Nursing Eliza Corporation Alexandra Drane, U.S. Department of Veterans Affairs Thomas Edes, City of Hope Medical Center Betty Ferrell, Anita K. Jones, University of Virginia Judith R. Lave, University of Pittsburgh Joanne Lynn, Center on Elder Care and Advanced Illness, Altarum Institute Willard G. Manning, The University of Chicago Charlie Sabatino, American Bar Association Commission on Law and Aging Tracy Schroepfer, University of Wisconsin-Madison Mark D. Smith, California HealthCare Foundation Stanford University School of Medicine VJ Periyakoil, James W. Vaupel, Max Planck Institute for Demographic Research Children’s Hospital Boston Joanne Wolfe, Although the reviewers listed above provided ma ny constructive comments and suggestions, they recommendations, nor did th were not asked to endorse the report’s conclusions or ey see the final draft of the report before its release. The review of this report was overseen by Bradford H. Gray, The Urban Institute and Donald M. Steinwachs, Johns Hopkins University. Appoi nted by the National Research esponsible for making certai n that an independent Council and the Institute of Medicine, they were r examination of this report was carried out in accordan ce with institutional procedures and that all review the final content of this report rests entirely with comments were carefully considered. Responsibility for the authoring committee and the institution. PREPUBLICATION COPY: UNCORRECTED PROOFS vii Copyright © National Academy of Sciences. All rights reserved.

9 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Copyright © National Academy of Sciences. All rights reserved.

10 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Foreword In spring 2009, bills for what eventually became the Affordable Care Act were being drafted in the House and Senate. A bipartisan gr oup of representatives sponsored a provision in the House version of the bill that would have authorized Medicare to pay doctors who counsel patients about living wills, advance directives, and options for end-of-life care. AARP endorsed the provision. However, pundits, bloggers, op-ed wr iters, talk show hosts, and other legislators claimed the provision would lead to government -sponsored euthanasia and heartless “death panels” that would adjudicate who shall live. The administration distanced itself from the proposal, which never found its way into the law. Still, the specter of death panels had st aying power. One 2011 poll of American adults found that 23 percent believed the Affordable Ca re Act gave government the power to make end- of-life decisions on behalf of seniors, and 36 percent were not sure. When Donald Berwick became commissioner of the Centers for Medica re & Medicaid Services, he attempted to authorize payment for counseling on advance care planning as part of an nual wellness visits provided for under the Affordable Care Act. This provision was to go into effect on January 1, n this provision. Doctors would still be free 2011. By January 4, the administration had withdraw to talk with patients about living wills, hospice ca re, or other end-of-life concerns, but they could not bill Medicare for this service. nd the political desire to avoi d it do not alter the fact that The controversy on this topic a every person will face the end of life one day, a nd many have had hard experience with the final days of a parent, a spouse, a ch ild, a sibling, another relative, or a dear friend. At a time when public leaders hesitate to speak on a subject that is profoundly c onsequential for the health and others to examine the facts dispassionately, well-being of all Americans, it is incumbent on assess what can be done to make those final da ys better, and promote a reasoned and respectful public discourse on the subject. With these goals in mind, the Institute of Medicine undertook the study documented in this report. A public-spirited donor , wishing to remain anonymous, came forward to support this donor and to the outstanding and di study. We are grateful to this verse committee, skillful co- chairs, and able staff who produced this compre hensive and compelling report. We hope it will stimulate the personal and public conversations and changes necessary to honor individual needs at the end of life. preferences and meet everyone’s Victor J. Dzau, M.D. Harvey V. Fineberg, M.D., Ph.D. President, Institute of Medicine Former President, Institute of Medicine PREPUBLICATION COPY: UNCORRECTED PROOFS ix Copyright © National Academy of Sciences. All rights reserved.

11 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Copyright © National Academy of Sciences. All rights reserved.

12 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Preface experience that evokes different reactions, Death is ultimately a deeply personal human emotions, and perceptions from individuals, fa milies, and communities th roughout the life cycle. for children, adults seen to be The perception of death is different in the prime of life, and those in the later years of life, but it is also highly su bjective and deeply person al irrespective of when it occurs along the life journey. Perceptions and views about deat h also are influenced by a wide array of social, cultural, economic, geographic, spiritual, and religious beliefs and experi ences. While most people have given thought to how they woul d like to die, many have found it difficult to communicate those views and choices to family and loved ones, and in many cases, family and loved ones have their own perceptions and views about death that can influence discussions about dying. Even when individuals and families are aligned, societal norms, expectations, and requirements are not always concordant with the patient’s wishes a nd choices. No one really knows whether, in the end, the death of a loved one occurred with the di gnity that was hoped for, or to what degree the dying experience was marred by pain, fear, a nd discomfort, emotional or physical. Unfortunately, the evidence demonstrates that even if one completes an advance directive or has a discussion on the subject with family a nd loved ones, it tends to be separated from the time of dying by months, years, or even decad es. Most people envision their own death as a peaceful and an ideally rapid transition. But with the exception of accidents or trauma or of a few illnesses that almost invariably result in death weeks or months after diagnosis, death comes at the end of a chronic illness or the frailty accompanying old age. Few people really have the opportunity to know when their death will occur. Even though death is very much part of the cycle of life and the j ourney to physical dying begins with the inception of living, thinking a nd talking about one’s ow n death usually remains in the background, at least until its prospect be come more probable or imminent. Of course, death can occur without warning, as it does with assaults and tr auma, whether accidental or occur with certain illnesses, purposeful. Sudden death also can but death most often is more insidious and the result of a chronic illness or dis that the likelihood of ease. And while it is true death increases with age, it is also true that death occurs throughout the life cycle. As a discipline, moreover, medicine is filled w ith examples of faulty predictions offered prospectively, sometimes too tentatively and ofte n too definitively. Humility about the inability to predict the actual time of d eath is an important attribute for the health care professional regardless of discipline or area of expertise. As longevity becomes more common and dise ase leading to early and frequent death death may be postponed or, as be lulled into the belief that becomes less prevalent, it is easy to oided. To be sure, advances in science and some prominent figures have forecast, even av medicine and the burgeoning field of stem ce e medicine offer the ll biology and regenerativ PREPUBLICATION COPY: UNCORRECTED PROOFS xi Copyright © National Academy of Sciences. All rights reserved.

13 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ously thought possible. After all, ch greater extent than in previ prospect of delaying death to a mu cy in the United States rose fr om age 47 to 78, and individuals in just one century, life expectan on of the population. It over 90 are now the most rapidly growing (albe it still a small) porti y will still be active at the turn of the next appears probable that many children being born toda century. Still, death will inevitably occur. tinued life abounds, fear s about death—or at While optimism about the prospect of con least how it can happen or who governs it—can easily be stoke d. Witness the impact of the choice of the words “death pane ls” during the heated debated unfortunate (although purposeful) surrounding the passage of the Affordable Care Act in August 2009. Those two words conveyed that individual choice in how one faces dying and death could be supplanted by a distant and uncaring bureaucracy. While this ence and the ease with which fear was unfounded, its very pres it was evoked underscore the sensitivity of th e topic of their personal mortality for many Americans, especially the elderl y. That 20 percent of the U.S. population will be older than 65 by 2050 further demonstrates the importance of findi ng ways to improve the quality of the final days of life and honoring indivi dual choices about end-of-l ife issues and concerns. The Institute of Medicine (IO M) has played an important role in conversations and policies surrounding end-of- life care. In 1997, the IO M produced the report Approaching Death: Improving Care at the End of Life , and in 2003, it extended the conve rsation to pediatrics in its When Children Die: Improving Palliative and End-of-Life Care for Children and Their report Each of these reports has had a major imp , and a number of new act on end-of-life care Families. programs, policies, providers, oped as a consequence. While and systems of care have devel many of the observations from these two major re ports remain relevant, the United States has undergone many changes in its demography, in health care outcomes, and in the costs of health care delivery since these reports were published. I ndeed, the last several years have witnessed a heightened focus on health care in this count ry, on what does and does not work, and on how systems of care vary across the populations and differ from those of other developed countries. There is no question that while th e cost of care in the United Stat es is the highest in the world, the outcomes of care are not superior to those in other nations in any dimension or metric. And while cost should not by itself drive how high-quality evidence-ba sed care is delivered, it must ded throughout the life course. be part of the dialogue. Th is applies to the care provi In 2012, the leadership of the IOM determined that another study on the end of life was ng health care reform in the United States. needed given the intense ongoing dialogue surroundi Dr. Harvey Fineberg, who was then president of the IOM, determined that this study should be conducted by a committee led by co-chairs whose co llective expertise bri dged the spectrum of the health care debate. One of us (Philip A. Pizzo) has spent decades caring for children and families with catastrophic disease facing the prospect of death. He also has been deeply steeped in biomedical research and the leadership of two major academic medical centers. The other (David M. Walker) has extensive experience in connection with fi scal responsibility and health care policy issues. His leadership experience spans all three major sectors of the U.S. economy. Of course each of us also brought personal history and experiences to the endeavor that resulted in areas of overlap, synergy, and sometimes diff erence in perspective. Our consensus committee tise related to various aspects of the medical, included 19 other members, each with deep exper ual dimensions surrounding death. social, economic, ethical, and spirit t study director, Dr. Adrienne Stith Butler, the committee Along with our highly competen held six meetings and hosted numerous disc ussions by phone, email, and other forms of communication. Those discussions generated both h eat and light and gave witness to the strong PREPUBLICATION COPY: UNCORRECTED PROOFS xii Copyright © National Academy of Sciences. All rights reserved.

14 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life d around the topic of the death and dying of and sometimes polarizing views that are engage vulnerable patients and families. Understandabl y, there were times when dialogues and debates seemed to reach an impasse, reflecting the larger public conversation (or the lack thereof) about various dimensions of the end of life. At the same time, those discussions helped sharpen our understanding of the issues involved and ulti mately enabled us to reach consensus on national conversation on conclusions and recommendations that we hope will further shape the dying in America. As committee co-chairs, we owe a deep debt of gratitude to all the committee members diligence. In the end, we share a common goal for their time, energy, passion, commitment, and of improving the individual and highly personal experience of dying in Am erica. We also want upport for this study. Dr. Judith to thank the IOM members and st aff who provided invaluable s Salerno, who was Leonard D. Schaeffer executive officer of the IOM when our work commenced, left the IOM to become CEO of the Susan G. Komen Breast Cancer Foundation. Without missing a beat, she sustained her commit ment and dedication to the committee’s work, as evidenced by her active and ittee meetings, discussions, and continued participation in comm debates. We also want to thank Dr. Stephanie Pi ncus for her commitment and important insights, as well as Lauren Shern, Bradley Eckert, and Thel ma Cox for their support. In addition, we were the beneficiaries of the writi ng and insights of Vicki and Ne il Weisfeld, who enabled our th substance. Each of these many individuals discussion and debates to be framed in words wi exceeded expectations and enabled our progress to be sustained and successful. We also want to thank the numerous individuals who provided pub lic testimony in person or in writing. The ground us in reality. It is our hope that this insights we received were invaluable and helped report will capture those insights and ultimately lead to improvements in end-of-life care and the experience of dying for all. Co-Chair Philip A. Pizzo, David M. Walker, Co-Chair Committee on Approaching Death: Addressing Key End-of-Life Issues PREPUBLICATION COPY: UNCORRECTED PROOFS xiii Copyright © National Academy of Sciences. All rights reserved.

15 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Copyright © National Academy of Sciences. All rights reserved.

16 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Acknowledgments Several individuals and organizations ma de important contributions to the study committee’s process and to this report. The co mmittee wishes to thank these individuals, but recognizes that attempts to identify all and ackno wledge their contributions would require more space than is available in this brief section. the sponsor of this study. Funds for the To begin, the committee would like to thank committee’s work were provided by a donor that wishes to remain anonymous. The committee gratefully acknowledges the contributions of the many individuals and organizations that assisted in the conduct of this study. Th eir perspectives were valuable in understanding critical topics with regard to end-of-life care. The committee who provided important thanks those individuals presentations and oral testimony at its ope n workshops. Appendix A lists each of these individuals and their affiliatio ns. Written testimony received fr om hundreds of individuals and organizations also helped the committee under stand the experiences of those who are likely approaching death and their family members and car egivers, as well as health care providers, and the perspectives of many stakeholder organi zations. Appendix C provides a summary of this input. We would also like to th eir valuable contributions to ank the following IOM staff for th vani, Laura Harbold niel Bethea, Marton Ca this study: Jim Banihashemi, Clyde Behney, Da DeStefano, Chelsea Frakes, Greta Gorman, Jim Je nsen, Nicole Joy, Abbey Meltzer, and Jennifer Walsh. The committee is grateful for the time, effo rt, and valuable information provided by all of these dedicated individual s and organizations. The committee would like to thank the author s whose commissioned papers added to the skamp, Harvard Medical School, and David G. evidence base for this study: Haiden A. Hu Stevenson, Vanderbilt University School of Medi cine; Melissa D. Aldridge and Amy S. Kelley, Mount Sinai; and Chris Feudtner, Wenjun Ahong, Jen Faerber, and Icahn School of Medicine at Dingwei Dai, Children’s Hospital of Philade lphia, and James Feinstein, Northwestern University. The committee is also grateful to Br yan Doerries, artistic director for Outside the Wire, and to T. Ryder Smith and Alex Morf, who performed at an event sponsored by the Institute of Medicine and the committee at the Chautauqua Institution. Great thanks are owed as well to Sherra Babcock, who first extended the invitation for the IOM’s participation at the in coordinating the logistics Murphy, who was instrumental Chautauqua Institution, and George Maureen Valenza from The University of Texas of the event. The committee is also grateful to MD Anderson Cancer Center and Mira Engel from Stanford University School of Medicine, who mmittee’s off-site meetings. helped to coordinate the co PREPUBLICATION COPY: UNCORRECTED PROOFS xv Copyright © National Academy of Sciences. All rights reserved.

17 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Copyright © National Academy of Sciences. All rights reserved.

18 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Contents ACRONYMS xix SUMMARY S-1 1 INTRODUCTION 1-1 Why this Study Is Important Now 1-4 Study Charge and Approach 1-4 Study Scope 1-8 Seventeen Years of Progress 1-10 Dying in America: 2014 1-11 Research Needs 1-16 Summary 1-16 Organization of the Report 1-17 2 THE DELIVERY OF PERSON-CEN TERED, FAMILY-ORIENTED 2-1 END-OF-LIFE CARE 2-2 Review of the Current Situation The Palliative Approach 2-11 The Pursuit of Quality in Care Near the End of Life 2-25 The Problem of Prognosis 2-33 Family Caregivers 2-37 Research Needs 2-41 Findings, Conclusions, and Recommendation 2-43 CATION AND ADVANCE CARE 3 CLINICIAN-PATIENT COMMUNI 3-1 PLANNING Background 3-2 The Current State of Advance Care Planning and What It Achieves 3-7 Advance Care Planning and Treatment Pref erences Among Specific Population 3-19 Groups Elements of Good Communication in Advance Care Planning 3-31 3-42 Model Advance Care Planning Initiatives 3-52 Advance Care Planning A Proposed Life-Cycle Model of 3-54 Research Needs 3-55 Findings, Conclusions, and Recommendation PREPUBLICATION COPY: UNCORRECTED PROOFS xvii Copyright © National Academy of Sciences. All rights reserved.

19 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Annex 3-1: Advance Care Planning in the Context of Common Serious Conditions 3-76 fe Sustaining Treatment (POLST) Form 3-81 Annex 3-2: Oregon Physician Orders for Li 4-1 ON AND DEVELOPMENT 4 PROFESSIONAL EDUCATI Progress and Continuing Needs 4-1 Impediments to Changing the Culture of Care Through Education 4-4 Roles and Preparation of Palli ative Care Team Members 4-13 4-23 Findings, Conclusions, and Recommendation POLICIES AND PAYMENT SYSTEMS TO SUPPORT HIGH-QUALITY 5 5-1 END-OF-LIFE CARE The Quality Challenges 5-3 The Cost Challenges 5-4 Financing and Organization 5-7 of End-of-Life Care Perverse Incentives and Program Misalignment 5-10 The Gap between Services Paid for and Wh at Patients and Families Want and Need 5-34 The Changing Health Care System: Financing and Organization 5-39 The Need for Greater Transp arency and Accountability 5-47 Research Needs 5-49 5-50 Findings, Conclusions, and Recommendation 6 PUBLIC EDUCATION AND ENGAGEMENT 6-1 6-2 The State of Public Knowledge About End-of-Life Care 6-6 The Changing Climate for Discussion of Death and Dying Considerations for Public Educa tion and Engagement Campaigns 6-10 6-14 Controversial Issues Recommendation 6-20 Campaigns on Health-Related Topics 6-28 Annex 6-1: Selected Public Engagement GLOSSARY GL-1 APPENDIXES A Data Sources and Methods A-1 B itute of Medicine’s Reports Approaching Death (1997) B-1 Recommendations of the Inst and When Children Die (2003): Progress and Significant Remaining Gaps C Summary of Written Public Testimony C-1 D the Implications of Potential Reforms D-1 Financing Care at the End of Life and E Epidemiology of Serious Illness and High Utilization of Health Care E-1 F Pediatric End-of-Life and Palli ative Care: Epidemiology and Health Service Use F-1 G-1 G Committee Biosketches PREPUBLICATION COPY: UNCORRECTED PROOFS xviii Copyright © National Academy of Sciences. All rights reserved.

20 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Acronyms AACN American Association of Colleges of Nursing AAMC Association of American Medical Colleges ABMS American Board of Medical Specialties ACA Patient Protection and Affordable Care Act ACGME Accreditation Council for Graduate Medical Education ACO accountable care organization ACP advance care planning AHRQ Agency for Healthcare Research and Quality ASHP American Society of Health-System Pharmacists CAPC Center to Advance Palliative Care CBO Congressional Budget Office CCCC Community Conversations on Compassionate Care program CHCF California HealthCare Foundation CHF congestive heart failure COPD tive pulmonary disease chronic obstruc CMS Centers for Medicare & Medicaid Services CPR cardiopulmonary resuscitation DNR do not resuscitate DPAHC durable power of attorney for health care DPOA durable power of attorney electronic health record EHR ELNEC End-of-Life Nursing Education Consortium end of life EOL EPEC Education in Palliative and End-of-life Care Program gross domestic product GDP GME graduate medical education HHS U.S. Department of Health and Human Services Health Insurance Portab ility and Accountability Act HIPAA health information technology HIT HPM hospice and palliative medicine Hospice and Palliative Nurses Association HPNA PREPUBLICATION COPY: UNCORRECTED PROOFS xix Copyright © National Academy of Sciences. All rights reserved.

21 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Health and Retirement Study HRS ICD implantable cardioverter defibrillator ICU intensive care unit IOM Institute of Medicine KFF The Henry J. Kaiser Family Foundation Medicare Payment Advisory Commission MedPAC MOLST medical orders for life-sustaining treatment NASW National Association of Social Workers ® NBCHPN National Board for Certification of Hospice and Palliative Nurses NCI National Cancer Institute National Consensus Project for Quality Palliative Care NCP National Institute on Aging NIA NIH National Institutes of Health NINR National Institute of Nursing Research NQF National Quality Forum PACE Program of All-incl usive Care for the Elderly PBRN practice-based research network patient-centered medical home PCMH PCP primary care physician physician orders for life-sustaining treatment POLST PSDA Patient Self-Determination Act RWJF Robert Wood Johnson Foundation SGR sustainable growth rate U.S. Department of Veterans Affairs VA VBP value-based purchasing WHO World Health Organization PREPUBLICATION COPY: UNCORRECTED PROOFS xx Copyright © National Academy of Sciences. All rights reserved.

22 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1 Summary ople nearing the end of life has changed significantly Health care delivery for pe the increasing number of elderly Americans, in the past two decades. Factors, such as certain populations, and structural barriers in access to care for a fragmented health lity care near the e care system present challenges to providing qua nd of life. There are, including a better understanding of ways to however, opportunities to improve this care, tion in advance care planning and shared decision making, improve individual’s participa ffordable Care Act (ACA), and efforts to provisions of the Patient Protection and A develop quality measure to enable accountability . In light of these developments, the comprehensive report on the current state of Institute of Medicine was asked to produce a care for people of all ages who may be appr oaching death. The study focuses specifically on the subset of people with “a serious illness or medical condition who may be approaching death.” For most people, death results from one or more diseases that must be managed Ideally, health care harmonizes with social, carefully over weeks, months, or even years. t as the end of life approaches. psychological, and spiritual suppor To this end, care near ented, and evidence-based. A person-centered, family-ori the end of life should be palliative approach can offer patients near the end of life and their families the best chance of maintaining the highest possible qua lity of life for the longest possible time. the palliative care needs of patients with Hospice is an important approach to addressing limited life expectancy and thei r families. One of the greatest remaining challenges is the need for better understanding of the role of palliative care among both the public and professionals across the continuum of care so that hospice and palliative care can patients and their families. achieve their full potential for be in control of decisions about their As much as people may want and expect to s can work against realizing that desire. own care throughout their lives, numerous factor gnitively able to make their Many people nearing the end of life are not physically or co difficult to recognize or iden tify when the end of life is own care decisions. It is often mmunication and advance care planning so approaching, making clinician-patient co important. Advance care planning conversa tions often do not take place because ch wait for the other to initiate them. patients, family members, and clinicians ea Understanding that advance care planning c an reduce confusion and guilt among family members forced to make decisions about care can be sufficient motivation for ill 1 presented in the summary appear in the ude references. Citations for the discussion This summary does not incl subsequent report chapters. PREPUBLICATION PROOFS UNCORRECTED COPY: S-1 Copyright © National Academy of Sciences. All rights reserved.

23 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-2 DYING IN AMERICA individuals to make their wishes clear. Even when these important conversations have occurred and family members are confident they know w hat the dying person wants and wishes, making those decisions is emotionally difficult, and families need assistance and support in this role. The education of health professionals who provide care to people nearing the end e past two decades, although serious problems of life has improved substantially in th remain. Knowledge gains have not necessar ily been matched by the transfer of people with advanced serious illness who are knowledge to most clinicians caring for nearing the end of life. In addition, the numbe r of hospice and palliative care specialists is small, which means the need for palliative ca re also must be met through primary care and through the other clinical specialties that entail care for significant numbers of people nearing the end of life. A substantial body of evidence shows that improved care for people near the end lity of care for people with of life is a goal within the nation’s reach. Improving qua lp stabilize total health advanced serious illness and a fo cus on their preferences may he care and social costs over time. In the e nd-of-life arena, there are opportunities for hat patients and families do not want and that savings by avoiding acute care services t it them. The committee be lieves these savings would free up funding are unlikely to benef , caregiver training, nut for relevant supporting services—for example rition services, and home safety modifications—that would ensure a better quality of life for people near the nd support their families. end of life and protect a More than a quarter of all adults, incl uding those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured these wishes e case despite the results of recent polls in writing or through conversation. This is th potential high costs of care near the end of life, and showing Americans worry about the the desire not to be a burden—financial or otherwise—on family members. As the baby and acceptance of information on death and boom generation ages, public interest in dying may increase. Key considerations in developing public education and engagement campaigns on this topic include sponso rship and engagement of key stakeholders, ng of messages, and eval uation of results. selection of target audiences, crafting and testi report are intended to address the needs The recommendations presented in this of patients and families. They also should assist policy make rs, clinicians in various ling bodies, leaders of health care disciplines along with their e ducational and credentia delivery and financing organizations, researcher s, public and private funders, religious care, journalists, and members of the and community leaders, advocates for better hat constitutes good care for people nearing interested public in learning more about w the end of life and the steps necessary to achieve such care for more patients and five recommendations in the families. The committee offers areas of care delivery, care planning, profes sional education and clinician-patient communication and advance development, policies and payment systems, and public education and engagement, ss in the nation’s approach to end-of-life which collectively offer a roadmap for progre care and management. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

24 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life SUMMARY S-3 end of life has changed markedly since the Health care delivery for people nearing the Approaching Death: Improving Care at the End of Life Institute of Medicine (IOM) published (1997) and When Children Die: Improving Palliative and End-of-Life Care for Children and (2003). Among the challenges to providing he their Families population are the alth care to this following factors: • the increasing number of elderly American s, including those with some combination disabilities, multiple chronic illnesses, of frailty, significant physical and cognitive and functional limitations; growing cultural diversity of the United St ates population, which makes it ever more • important for clinicians to approach all pa tients as individuals, without assumptions about the care choices they might make; • structural barriers in acce ss to care that disadvantag e certain population groups; • a mismatch between the servic es patients and families need most and the services they can readily obtain; s not kept pace with the growing demand; • availability of palliative care services ha wasteful and costly systemic problems, in cluding perverse financial incentives, a • fragmented care delivery system, time pre ssures that limit communication, and a lack on across programs; and of service coordinati the resulting unsustainable growth in costs of the current health care delivery system • over the past several decades. These challenges are to some extent bala nced by new opportuniti es for improving the delivery of health care near the end of life: • an increased understanding of ways to improve participation in effective advance care planning and shared decision making am ong patients and families, including participate in end-of-life seriously ill children and adol escents, who may be able to decision making on their own behalf; • on and Affordable Care Act (ACA) and other various provisions of the Patient Protecti tion and financing of health services; system reforms that affect the organiza lth information technologies, including • increasing use of communication and hea electronic health records; • growing recognition of and support fo r the role of caregivers; and es to enable accountability. • efforts to develop quality measur onal research; however, actice will require additi To translate some of these opportunities into pr evidence-based models actice the currently known the greater challenge is to incorporate into pr of care. ND APPROACH STUDY CHARGE A ents, the IOM was charged w ith conducting a consensus study In view of these developm all ages who may be state of care for people of to produce a comprehensive report on the current approaching death (see Box S-1). To conduct mbled the 21-member this study, the IOM asse PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

25 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-4 DYING IN AMERICA Committee on Approaching Death: Addressing Key End-of-Lif e Issues, which comprised , pediatrics, consumer experts in clinical care, aging and geriatrics, hospice and palliative care communications, clinical decisi on making, health care financing, advocacy, spirituality, ethics, IOM recognize that many of the actions and law, and public policy. The committee and the systemic changes that would improve care for peopl e nearing the end of life would also benefit many other patient groups, especially those with advanced serious illnesses, severe chronic conditions, and the functional limitations that come with frailty. However, the committee’s “a serious illness or charge limited this study’s focus specifically to the subset of people with medical condition who may be approaching death.” shes to remain anonymous and whose This study was supported by a donor that wi identity was unknown to the committee. The sponso r played no role in the selection of the committee’s co-chairs or members or in its work. To carry out its charge, the committee reviewed evidence that has accumulated since th es cited above were e two earlier IOM studi and additional events to gath produced; conducted public meetings er testimony from interested individuals; conducted six meeti ngs of its members; and, via an active web portal, received comments from more than 500 additional individu als. In addition, papers were commissioned on care. (See Appendix A for nd pediatric end-of-life the financing, utilization, and costs of adult a ces and methods for this study.) further discussion of the data sour BOX S-1 Study Charge will produce a comprehensive report on the The IOM will conduct a consensus study that current state of medical care for persons of all ages with a serious illness or medical condition who may be approaching death and who require coordinated care, appropriate personal communication (or communication with parents or guardians for children), and individual and family support. The committee will assess the delivery of medical care, social, and other supports to both the person approaching death and the family; person-family-provider communication of values, preferences, and beliefs; advance care planning; health care costs, financing, and reimbursement; and education of health professionals, patients, families, ill also explore approaches to advance the field. employers, and the public at large. The study w Specifically, the committee will: Approaching Death: Improving Care at the End 1. Review progress since the 1997 IOM report When Children Die: Improving Palliative and End-of-Life of Life and the 2003 IOM report, . The committee will assess major subsequent events Care for Children and their Families and recommendations that have been implemented as well as those that were not implemented along with remaining challenges and opportunities. 2. Evaluate strategies to integrate care of thos e with serious illness or medical condition who may be approaching death into a person- and family-centered, team-based framework. Demographic shifts, cultural changes, fiscal realities, and the needs of vulnerable populations will be considered as will advances in technology that affect the provision of care in different settings, most notably in the home. Families are a vital component of the healthcare team, and the financial and other ramifications for families and society will be considered. 3. Develop recommendations for changes in policy, financing mechanisms and payment and measurement, and clinical and supportive practices, workforce development, research care. These recommendations will align care with individual values, preferences, and PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

26 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life SUMMARY S-5 beliefs and promote high-quality, cost-effective care for persons with serious illness or medical condition who may be approaching death, as well as with their families. 4. Develop a dissemination and communication strategy to promote public engagement understanding, and action. This strategy will need to consider the fears and anxieties surrounding care for patients who may be approaching death as well as functional dependency, aging and death, and cultural diversity in values, preferences and beliefs. STUDY FINDINGS AND RECOMMENDATIONS The recommendations presented in this repo rt are intended to address the needs of assist policy makers, clinicians in various patients and their families. They also should disciplines along with their educat ional and credentialing bodies, leaders of health care delivery and private funders, re and financing organizations, researchers, public ligious and community leaders, advocates for better care, journalists, and members of the intere sted public in learning more about what constitutes good care for people nearing the end of life and the steps necessary to achieve such care for more patients and fam ilies. The committee offers five recommendations tient communication and advance care planning, in the areas of care delivery, clinician-pa s and payment systems, and public education professional education and development, policie and engagement, which collectively offer a road map for progress in the nation’s approach to end-of-life care and management. The Delivery of Person-Centered, Fa mily-Oriented End-of-Life Care For most people, and except for those who di e suddenly as a consequence of an accident or trauma, death results from one or more diseas es that must be managed carefully over weeks, months, or even years, through many ups and downs . Ideally, health care harmonizes with social, psychological, and spiritual support as the end of life approaches. To this end, care near the end of life should be person-centered, fa mily-oriented, and evidence-based. 2 A palliative nd of life and their families the best approach can offer patients near the e life for the longest possible time. The possible quality of chance of maintaining the highest committee defined palliative care for this report as care that provides relief from pain and other is focused on patients with serious advanced symptoms, that supports quality of life, and that illness and their families. Hospice is an importa nt approach to addressing the palliative care needs of patients with limited life expectancy and their families. For people with a terminal the near future, hospice is a co illness or at high risk of dying in mprehensive, socially supportive, pain-reducing, and comforting al ternative to technologically el aborate, medically centered on with palliative care. interventions. It therefor e has many features in comm of treatment for any serious illness that Palliative care can begin early in the course , such as difficulty her distressing symptoms requires excellent management of pain or ot breathing or swallowing, and for pa provided in conjunction with tients of any age. It can be r example. Palliative care is ase, or congenital disorders, fo treatments for cancer, heart dise it is provided through hospital- provided in settings throughout the continuum of care. Often based consultation programs and outside the hospital through hospice programs in the home, 2 ary care and various specialties that care for people with Basic palliative care is provided by clinicians in prim advanced serious illness, while specialty palliative care is provided by specialists in hospice and palliative medicine, nursing, social work, chaplaincy, and other palliative care fields. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

27 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-6 DYING IN AMERICA ity, or long-term acute care facili nursing home, assisted living facil ty; palliative care outpatient ecialists in hospice and clinics also are becoming increasingly prevalen t. Besides physician sp ude specialty advanced practice palliative medicine, interdiscipl inary palliative care teams incl nurses and registered nurses, soci al workers, chaplains, pharmacists, rehabilitation therapists, direct care workers, and family members. A number of specialty professional associati ons encourage clinicians to counsel patients families receive this he lp in a timely manner. about palliative care, but too few patients and Palliative care programs a nd other providers who care for patients nearing the end of life are not currently required to measure and re life care they provide, nor is port on the quality of the end-of- there consensus on quality measures. These gaps are a barrier to accountability. Only hospice programs report on the quality of end-of-life care. As yet, the evidence base is insufficient to enable establishment of a validated list of the core components of quality end-of-life care acro ss all settings and providers. The committee proposes a list of at least 12 su ch components (see Table S-1). Th ey include frequent assessment of a patient’s physical, emotional, social, and spiritual well-being; management of emotional eeded and desired; and regular hospice or palliative care if n distress; referral to expert-level revision of a care plan and access to services based on the changing needs of the patient and family. the growing demand for family caregiving. The committee paid special attention to tial and increasingly complex services for people Family caregivers provide a wide range of essen and those nearing the end of life. Three in 10 U.S. adults and with advanced serious illnesses caregivers (although these numbers represent all nearly 2 in 10 U.S. workers are family near the end of life). This growing unpaid caregivers, not just those caring for someone ally, emotionally, and ed; and stressed physic workforce generally is invisible; undertrain financially. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

28 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-7 SUMMARY TABLE S-1 Proposed Core Components of Quality End-of-Life Care Rationale Componen t Interventions and assistance must be based on accurately identified Frequent assessment of the patient’s physical, emotional, social, and needs. spiritual well-being All clinicians should be able to identify distress and direct its initial Management of emotional distress and basic management. This is pa rt of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance. Offer referral to exper People with palliative needs beyond those that can be provided by -level palliative t ve access to appropriate expert- non-specialist-level clinicians deser care level care. Offer referral to hospice if the patient People who meet the hospice eligibility criteria deserve access to has a prognosis of 6 months or less services designed to meet their end-of-life needs. t -level Management of care and direct Care of people with serious illness may require specialis palliative care physician manageme nt, and effective physician contact with patient and family for management requires direct examination, contact, and complex situations by a specialist- communication. level palliative care physician Patients in advanced stages of serious illness often require Round-the-clock access to assistance, such as with activities of daily living, medication coordinated care and services management, wound care, physical comfort, and psychosocial needs. Round-the-clock access to a consistent point of contact that can coordinate care obviates the need to dial 911 and engage emergency medical services. Management of pain and other All clinicians should be able to identify and direct the initial and basic management of pain and other symptoms. This is part of the symptoms definition of palliative care, a basic component of hospice, and clearly of fundamental importance. Even patients who are not emotionally distressed face problems in Counseling of patient and family such areas as loss of functioning, prognosis, coping with diverse symptoms, finances, and family dynamics, and family members experience these problems as well, both directly and indirectly. A focus on the family is part of the definition of palliative care; Family caregiver support family members and caregivers both participate in the patient’s care and require assistance themselves. Person-centered care requires awareness of patients’ perspectives Attention to the patient’s social on their social environment and of their needs for social support, context and social needs including at the time of death. Companionship at the bedside at time of death may be an important part of the psychological, social, and spiritual aspects of end-of-life care for some individuals. The final phase of life often has a spiritual and religious Attention to the patient’s spiritual and component, and research shows that spiritual assistance is religious needs associated with quality of care. Regular personalized revision of the Care must be person-centered and fit current circumstances, which may mean that not all the above components will be important or care plan and access to services based on the changing needs of the patient desirable in all cases. and family is table were developed by the committee. NOTE: The proposed core com ponents of quality end-of-life care listed in th for Quality Palliative Care set Most of the components relate to one of the domains in th e Clinical Practice Guidelines forth by the National Consensus Project for Quality Palliative Care. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

29 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-8 DYING IN AMERICA Approaching Death: Improving Care at the End of Life When the 1997 IOM report was published 17 years ago, hospice was well on its way to achieving mainstream status, and palliative care was in the early stages of deve lopment. Now, hospice is in the mainstream, and ssions of medicine, nursing, palliative care is well established in larger hos pitals and in the profe social work, and chaplaincy. Even so, one of th e greatest remaining challenges is the need for palliative care am ong both the public and professionals across better understanding of the role of the continuum of care so that hospice and pall iative care can achieve their full potential for patients of all ages with serious advanced illness. Recommendation 1 Government health insurers and care delivery prog rams as well as private health insurers should cover the provision of comprehensive care for indi viduals with advanced serious illness who are nearing the end of life. Comprehensive care should be seamless, high-quality, integrated, patient-c • entered, family-oriented, and consistently accessible around the clock; consider the evolving physical, emotional, social, and spiritual needs of individuals • approaching the end of life, as well as t hose of their family and/or caregivers; be competently delivered by professionals w ith appropriate expert ise and training; • • include coordinated, efficient, and interoperable information tr ansfer across all providers and all settings; and • be consistent with individuals’ values, goals, and informed preferences. Health care delivery organizati ons should take the following steps to provide comprehensive care: All people with advanced serious illness shoul • d palliative care or, d have access to skille when appropriate, hospice care in all settings wh ere they receive care (including health care facilities, the home, and the community). • Palliative care should encompass access to an in terdisciplinary palliative care team, including board-certified hospice and pall iative medicine physicians, nurses, social workers, and riatricians). r health professionals as need chaplains, together with othe ed (including ge Depending on local resources, access to this team may be on site, via virtual consultation, or by transfer to a setting with thes e resources and this expertise. The full range of care that is delivered s • hould be characterized by transparency and e quality and cost meas ures for all aspects accountability through public reporting of aggregat ted to end-of-life care. The committee believes that informed of the health care system rela decline medical or social honored, including the right to individual choices should be services. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

30 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life SUMMARY S-9 Clinician-Patient Communicati on and Advance Care Planning be in control of decisions about their own As much as people may want and expect to care throughout their lives, numerous factors can work against realizing that desire. Many people nearing the end of life are not phys ically or cognitively able to make their own care decisions. It is often difficult to recognize or identify when the end of life is appr oaching, making clinician- . Advance directives were patient communication and adva nce care planning so important developed to ensure that the decisions people ma de when fully able are followed when they can these checkbox-style documents have proven no longer speak for themselves. However, inflexible, inconsistent with subsequent even ts and decisions, and fo r various reasons both ineffective and unpopular. Electronic storage of advance directives, statements of wishes, health care proxies, or other relevant mate rial—either in the patient’s electr onic health record or in an external database—holds promise for addressi ng a few of the current problems (see also Recommendation 4). The advance care planning process can start at any age and state of health and should involve family members and clinicians. The discussion centers on lif e values, goals, and siting of perceptions over time, dge, gained in periodic revi treatment preferences; this knowle provides a guide for matching subsequent care d ecisions with the patient’s wishes and becomes increasingly specific as illness progresses. Advan be useful when they ce directives (forms) can are a component of these more comprehensive disc ussions, but they must be flexible and give make decisions based on specific circumstances. health care agents and clinicians leeway to People who capture their care preferences in discussion or writing most commonly choose care that focuses on improving quality of lif e. However, the vast majority of people have family and do not have not engaged in an end-of-life discussion with thei r health care provider or an advance directive. People who are younger, p oorer, less educated, and nonwhite are less likely to have such a document. Moreover, within all population groups, end-of -life preferences vary widely. Clinicians and even close family memb ers cannot accurately guess or assume what an individual’s preferences will be; they must ask the patient—that is, have “the conversation”— and do so as often as necessary. because patients, family ions often do not take place Advance care planning conversat initiate them. Understanding that advance care members, and clinicians each wait for the other to planning can reduce the burden of confusion and guilt among family members forced to make decisions about care can be sufficient motivation fo r ill individuals to make their wishes clear. Even when these important conversations have o ccurred and family members are confident they know what the dying person wants and wishes, maki ng those decisions is emotionally difficult, and families need assistance and support in this role. The overall quality of comm unication between clinicians and patients with advanced discussing prognosis, dealing with emotional and illness is poor, particularly with respect to ce between hoping for the best and preparing for spiritual concerns, and finding the right balan and financial disincen tives for having these the worst. Ample evidence documents structural ted advance care planning, the default decision discussions. In the absence of adequate documen hopeless or painful. A result of inadequate is to treat a disease or condition, no matter how intensive treatment, as well as more negative advance care planning, therefore, can be more impacts on family members. effective advance care planning choose Because most people who participate in r living longer, advance care planning can maximizing independence and quality of life ove anted interventions. The with unnecessary and unw potentially save health care costs associated PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

31 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-10 DYING IN AMERICA misrepresentation of ACA provisions for advanc e care planning as “death panels” confused of advance care planning, which amount to many Americans about the benefits and goals ensuring that patients’ care pref erences, insofar as possible, ar e honored. This caused the national dialogue to turn away from how best to facilita te earlier and more mean ingful discussions about end-of-life preferences among indivi duals, families, and clinicians. Recommendation 2 Professional societies and other organizations that establish qu ality standards should develop standards for clinician-patient communication and advance care planning that are measurable, actionable, and evidence based. These standards s hould change as needed to reflect the evolving istent with emerging evidence, methods, and population and health system needs and be cons technologies. Payers and health care delivery organizations should adopt these standards and their supporting processes, and in tegrate them into assessments, care plans, and the reporting of health care quality. cieties should adopt ment, and professional so Payers should tie such standards to reimburse tying the standards to reimburse ment, licensing, and credentialing to policies that facilitate encourage ren with the capacity to do so, to have the opportunity to all individuals, including child • participate actively in their he oughout their lives and as they alth care decision making thr approach death, and receive medical and related so cial services consistent with their values, goals, and informed preferences; • clinicians to initiate high- quality conversations about adva nce care planning, integrate the results of these conversations into the ongoing care plans of patients, and communicate with ested by the patient; and other clinicians as requ • clinicians to continue to revisit advance care planning discussions with their patients because individuals’ preferences and circ umstances may change over time. Professional Education and Development The education of health professionals who pr ovide care to people nearing the end of life has improved substantially since the two prev ious IOM reports cited above were published, although serious problems remain. Hospice and pall iative medicine has become an established medical specialty. Other areas of progress include preparation of more faculty members to teach lliative care content throughout clinical education, palliative care, greater inclusion of some pa palliative care organizations and journals, and development of the professional infrastructure of expansion of the evidence base. persist. First, the knowledge gains have not On the other hand, two important deficiencies ansfer of knowledge to most cl necessarily been matched by the tr inicians caring for people with ing the end of life. Second, the advanced serious illness and near number of hospice and palliative for palliative care al so must be met through care specialists is small, which means the need significant numbers of ties that entail care for primary care and through the other clinical special ample, cardiology, oncology, pulmonology, and people nearing the end of life (for ex nephrology). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

32 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life SUMMARY S-11 ained educational patterns obstruct further In the committee’s judgment, three deeply ingr development of palliative care. Fi are generally absent from the rst, hospice and palliative care usual curricula of medical and nursing schools. One way to ensure attention to this topic in the duate training, and among future he alth professionals would be undergraduate curriculum, in gra re and certificati on examinations. to add more such content to licensu A second negative pattern is the persistence of single-profession educat ion silos. This is problematic because palliative care embraces an interdisciplinary, team-based approach. A third pattern, most notable among physicians, is the lack of attention to developing clinicians’ ability to talk effectively to patients about dying and teaching them to take the time to on of their concerns, values, and goals. Studies have established truly listen to patients’ expressi that physicians can be taught th e communication skills needed to provide good end-of-life care, Approaching Death (IOM, 1997) and but few medical educators teach these skills. When Children Die (IOM, 2003) specify the same four domains of clinical competency in palliative care: scientific and clinical knowledge; in terpersonal skills a nd knowledge, ethical and e as relevant today as they professional principles, and organi zational skills. These domains ar were when those earlier reports were produced. in hospice and palliative medicine, nursing, In addition to physician board certification social work, and chaplaincy all have establishe d specialty certification programs in hospice and r of certified individuals in each palliative care, although the numbe of these professions remains small relative to the need. Pharmacists also pl lliative care, although the ay important roles in pa pharmacy field has no comparable certificati on program. From time to time, as needed, rehabilitation therapists sp ecializing in occupational ther apy, physical therapy, and speech- language pathology become additional members of the palliative care team. At the bedside, vital roles are played by direct care workers—a category that comprises nursing assistants, home health aides, and personal care aides. Finally, and in many ways most important, are family members. Even those who are not fully engaged as caregivers may have c onsiderable day-to-day responsibility for patient management at home and coordination of care across services and among care providers. Recommendation 3 ng boards, state regulatory agencies, and Educational institutions, creden tialing bodies, accrediti health care delivery organizations training, certification, and/or should establish the appropriate licensure requirements to strength en the palliative care knowledge and skills of all clinicians who care for individuals with advanced serious illness who are neari ng the end of life. Specifically, • all clinicians across disciplines and specialti es who care for people w ith advanced serious illness should be competent in basic pallia tive care, including communication skills, interprofessional collaborati on, and symptom management; • educational institutions and pr e training in palliative care ofessional societies should provid domains throughout the professional’s career; accrediting organizations, such as the Accred itation Council on Graduate Medical Education, • ms for all specialties cal experience in progra care education and clini should require palliative responsible for managing advanced serious il ary care clinicians); lness (including prim PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

33 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-12 DYING IN AMERICA medical, nursing, and social work certifying bodies, such as the • specialty boards, and health systems should require knowledge, skills, and competency in palliative care; • state regulatory agencies should include educatio n and training in pallia tive care in licensure cial workers, and others who provide health requirements for physicians, nurses, chaplains, so care to those nearing the end of life; • entities that certify specialty-level health care providers should create pathways to certification that increase the number of health care professi onals who pursue specialty-level palliative care training; and • nizations, academic medical centers, and teaching entities such as health care delivery orga hospitals that sponsor specialty-level traini ng positions should commit institutional resources to increasing the number of available training positions for specialty-level palliative care. Policies and Payment Systems to S upport High-Quality End-of-Life Care eatly improved care for people nearing the A substantial body of evidence shows that gr end of life is a goal within the nation’s reach. At the same time, broad agreement exists across United States must take steps to stabilize the political and ideological spectrum that the expenditures on health care over tim e. In addressing care at the e nd of life, these goals can be reached in tandem: evidence indicates that improvi ng the quality of care and the availability of pressing needs does not have to entail increased services to meet patients’ and families’ most expenditures. nced serious illness and a focus on their Improving quality of care for people with adva preferences may help stabilize to tal health care and social cost s over time. In the end-of-life arena, there are opportunities fo r savings by avoiding acute care services that patients and families do not want and that are unlikely to benefit them. The committee believes these savings would free up funding for releva nt supporting services—for ex ample, caregiver training, ty modifications—that would ensu nutrition services, and home safe re a better quality of life for otect and support their families. people near the end of life and pr is how those resources are spent; the ways What requires closer examination and reform pede high-quality care; in which perverse financial incentives distort th e current system and im how geographic variations in expenditures can be reduced; and whet her currently funded ls, preferences, diverse cultural differences, services are well matched to the values, goa expectations, and needs of patients and families, with ample evidence suggesting they are not. xpenditures totaled $2.8 trilli U.S. national health care e on in 2012, or about 17.2 percent th care spending has annual increase in heal of gross domestic product (GDP). Although the slowed in recent years, the size of the sector and the possibility of continued future growth e political spectrum. Of particular concern is remains a significant concern to analysts across th ding on health care, a consequence in part of growing numbers of the likely growth in public spen e and for Medicaid as expansions under the people eligible for Medicare as baby boomers ag ecially important in the end-of-life context ACA are implemented. These two programs are esp because approximately 80 percent of U.S. deaths occur among people covered by Medicare, and for long-term services needed by frail elderly individuals. The Medicaid is the principal payer have evolved in these two programs create inefficiencies and payment incentives that recovered, could pay for a needed expansion in key supporting opportunities for savings that, if s of care for these patients. services and stabilize the cost PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

34 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-13 SUMMARY A major reorientation and restructuring of Medicare, Medicaid and other health care delivery programs is needed in order to craft a system of care designed to ensure quality and address the central needs of all people nearing the end of life and their families. Current financial ppropriate alternatives drive a re incentives and a lack of more a liance on the riskiest and most changed, and positive alternatives should be costly care settings. These incentives should be further developed. In addition, many of the most urgent needs of these patients and th eir families are not ementation of affordable support service programs medical per se and require the design and impl that rigorously • target the highest-risk patients and families, and needs as they evolve over time. tailor services to specific family • teredness, is fundamental to achieving the This approach, the essence of person-cen efficiency goals of public fina dicare’s efforts to decrease ncing programs: on the one hand, Me utilization of unnecessary acute care and on th e other, Medicaid’s attempts to prevent unnecessary use of nursing homes. These goals cannot be met without improving the supporting services that allow families to keep their loved ones safe and well cared for in the setting where the vast majority of seriously ill patients want to be—at home, which for some people may be an assisted living residence, nursing home, or skilled nursing facility. The U.S. health care system is changing signi ficantly. This fact underscores the need to establish additional accountability and transparen cy measures so that the effects of these changes—both intended and unintended—on people nearing the end of life can be assessed. Further changes in health care policy and legislation may be re quired to serve this group of Americans well. Recommendation 4 very programs should integrate the ivate insurance and health care deli Federal, state, and pr rvices to support the provision of financing of medical and social se quality care consistent with the values, goals, and informed preferences of pe ople with advanced serious illness nearing the legislation is necessary to implement this end of life. To the extent that additional recommendation, the administration should seek a such legislation. In nd Congress should enact addition, the federal government should require pub lic reporting on quality measures, outcomes, and costs regarding care near the end of life (e.g., in the last year of life) for programs it funds or ment of Veterans Affairs). The federal administers (e.g., Medicare, Medicaid, the Depart health care delivery systems to do the same. government should encourage all other payment and Specifically, actions should • provide financial incentives for medical and social support serv ices that decrease the need for emergency room and acute − care services, rs (from hospital to ambulatory settings as coordination of care across settings and provide − well as home and community), and PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

35 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA S-14 − improved shared decision making and advance ca re planning that re duces the utilization of unnecessary medical services and those not consistent with a patient’s goals for care; • require the use of interoperable electronic he alth records that incorporate advance care planning to improve communication of indi viduals’ wishes across time, settings, and providers, documenting (1) the designation of a surrogate/decision maker, (2) patient values and beliefs and goals for care, (3) the presence of an advance directive, and (4) the presence te populations; and eatment for appropria of medical orders for life-sustaining tr • encourage states to develop and implement a P hysician Orders for Life-Sustaining Treatment (POLST) paradigm program in accordance with nationally standardized core requirements. Medical and social services provided should a ccord with a person’s va lues, goals, informed preferences, condition, circumstan ces, and needs, with the exp ectation that individual service needs and intensity will change over time. High- quality, comprehensive, person-centered, and use of 911 calls, family-oriented care will help re duce preventable crises that l ead to repeated emergency department visits, and hospital admissi appropriately, should ons, and if implemented contribute to stabilizing aggregate societal expe nditures for medical and related social services and potentially lowering them over time. Public Education and Engagement The IOM’s 1997 report (p.270) concludes that “a continuing public Approaching Death lop a better understanding of the modern experience of dying, the discussion is essential to deve options available to patients and families, and the obligations of communities to those wise, the IOM’s 2003 report approaching death.” Like When Children Die: Improving Palliative Care and End-of-Life Care for Children and Their Families calls for better communication about end-of-life issues in ways that encompass but are somewhat broader than the activities of advance care planning. In the years since thes e reports were published, the need for public education and engagement concerning end-of-lif e care has not abated, and it is manifest at several levels: • r constructive public policy related to the at the societal level, to build support fo organization and financing of care near the end of life and for institutional and provider practices that ensure that this care is high-quality and sustainable; ise public awareness of care options in the • at the community and family levels, to ra final phase of life, the needs of caregivers, and the hallmarks of high-quality care; and • at the individual level, to motivate a nd facilitate advance care planning and ivers, and clinicians about values, goals, meaningful conversations with family, careg and informed preferences for care. older, have given little or More than a quarter of all a dults, including those aged 75 and wer have captured these wishes in writing or no thought to their end-of-life wishes, and even fe through conversation. This is the case despite the results of recent polls showing Americans ear the end of life, centered around its potential harbor several consistent worries about care n high costs and the desire not to rwise—on family members. be a burden—financial or othe bout end-of-life care ngful conversations a Expecting people to understand or have meani issues presumes a common vocabulary; however , surveys show people do not understand what PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

36 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life SUMMARY S-15 palliative care is or what role it plays near the end of life, do not ha ve a clear concept of “caregiver,” and may be confused by the various titles assigned by state laws to people who cision makers or proxies). Even some clinicians serve as health care agents (such as surrogate de e (care oriented toward quality mistakenly confuse palliative car of life for people with serious liative care for people in their last months of illnesses) with hospice (a model for delivering pal life). Events and activities since 1997 have improved the climate for discussions of death and dying, and the topic is not taboo as it was a few decades ago. As the baby boom generation ages, public interest in and accep tance of information on death and dying may increase. Key ic education and engagement cam considerations in developing publ paigns on this topic include sponsorship and engagement of key stakeholders , selection of target audiences, crafting and a mix, and evaluation. M eanwhile, stories about testing of messages, selection of the medi ppear regularly in the news dying—“good deaths” and bad ones—a media, in entertainment television programming and movies, in books, and in social media. end-of-life care can be expect ed in a heterogeneous nation Conflicts of values related to such as the United States. People’s views on serious illness and the end of life, bereavement and loss, and the duties of caregive rs are deeply held and vary widely among individuals. While people may differ in their opinions, it is importa nt to disseminate accurate information and on the facts as they are known evidence so that those opinions are based, to the extent possible, and a candid assessment of their limits. Recommendation 5 ntal agencies, community-based organizations, Civic leaders, public health and other governme ealth care delivery organizations, payers, faith-based organizations, consumer groups, h ge their constituents and provide fact-based employers, and professional societies should enga information about care of people with advan ced serious illness to encourage advance care e needs and values of individuals. planning and informed choice based on th Specifically, these organizations and groups should • use appropriate media and other channels to reach their audiences, including underserved populations; re options and informed decision making provide evidence-based information about ca • regarding treatment and care; • encourage meaningful dialogue among individual s and their families and caregivers, clergy, to advanced serious illness; goals, and preferences related and clinicians about values, care and rmed decision making and public support for dispel misinformation that may impede info • health system and policy reform rega rding care near the end of life. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

37 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S-16 DYING IN AMERICA In addition, • and materials about care near health care delivery organizati ons should provide information ate clinicians’ ongoing di the end of life as part of th eir practices to facilit alogue with patients, families, and caregivers; are communication and rtake, support, and sh • government agencies and payers should unde rceptions and actions with respect to end-of- behavioral research aimed at assessing public pe iloring them to appropriate ing effective messages and ta life care, developing and test ng progress and results; and audience segments, and measuri • health care professional societies should prep are educational materials and encourage their members to engage patients and their caregivers and families in advance care planning, including end-of-life disc ussions and decisions. All of the above groups should work collaborative ly, sharing successful strategies and promising practices across organizations. CONCLUSION The committee identified persistent major gaps in care near the end of life that require stakeholder groups. Understandi ng and perceptions of death and urgent attention from numerous the population and are influen dying vary considerably across ced by culture, socioeconomic on and fear. Engaging people in defining their status, and education, as well as by misinformati own values, goals, and preferences concerning care at the end of lif e and ensuring that their care n remarkably elusive and challenging. team understands their wishes has prove While the clinical fields of hospice and pallia tive care have become more established, the number of specialists in these fi elds is too small, and too few c linicians in primary and specialty fields that entail caring for individuals with advanced serious illnesses are proficient in basic to have honest and dire ct conversations with palliative care. Often clinicians are reluctant tients and families face additional difficulties patients and families about end-of-life issues. Pa presented by the health care system itself, which does not provide adequate financial or at might truly make a and social services th organizational support for the kinds of health care difference to them. The committee believes a patient- oach to care near the end centered, family-oriented appr affordable, and effective care iority and that compassionate, of life should be a high national pr for these patients is an achievable goal. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

38 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Introduction Every American has a stake in improving car e for people nearing the end of life. For patients and their families, that stake is immedi ate and personal, and no care decisions are more profound. For the millions of Americans who work with or within the health care sector— clinicians, clergy, other direct care providers , and support staff—the stake is a matter of professional commitment and responsibility. Hea lth system managers, payers, and policy makers the provision of end-of-life care th at is not only high-quality but also have a professional stake in also affordable and sustainable. All Americans shoul d be able to expect that they and their loved ones will receive the care and services they need at the end of their lives. Meanwhile, the number of Americans with some combination of ag ing, frailty, dependence, and multiple chronic em at every level and on every conditions is rising, placing grow ing pressure on the health syst stakeholder group. at today help people cine and health care th As this report shows, the advances in medi have been accompanied by several collateral survive advanced illnesses and serious injuries effects: growing frustration among health care prof • essionals at the mismatch between their training and the complex needs of the people they serve; • a high—and escalating—financial price, whic h includes costs for interventions that and that may be unlikely to benefit many people near the end of life do not want them; and a perception among many Americans that the health care system is not designed to • meet their most pressing needs and prioritie s, many of which involve not medical care but social services. Medicine (IOM) Committee on Approaching This study was conducted by the Institute of opinions vary regarding many dimensions of Death: Addressing Key End of Life Issues. While the nation’s health care system, the committee re ached the conclusion that substantially higher- quality, compassionate, yet affordable and sustaina ble care for people with advanced illnesses is a goal within reach. We recognize the broad agreement across many political fronts that the t, however, we believe In the end-of-life contex nation must stabilize expenditures on health care. ovision of quality care that offers patients and that goal must be achieved in tandem with the pr families both compassion and choice. This is a challenging agenda; however, this report makes clear that effective, evidence- e already known. For the aring the end of life ar based strategies for improving care for people ne system can be reallocated to implement those most part, money currently in the health care social supports now unavailable. In short, the strategies and even add some of the much-needed PROOFS UNCORRECTED COPY: PREPUBLICATION 1-1 Copyright © National Academy of Sciences. All rights reserved.

39 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-2 DYING IN AMERICA committee envisions an approach to care for people near the end of life that is both high-quality and compassionate; delivers value to patients, families, and the health system; and is sustainable and affordable. Much has been written about the high costs of care in the last year of life. Persuasive arguments have been made, however, that it is mi sleading to look back at these expenditures and Methodologically, it is difficult to define the “end attribute them all to “the high cost of dying.” nvolves intense treatment—until ng acute illness, necessarily i of life”—which, generally entaili e serious episodes do not appear in these the patient has died. People who survive thes the sickest and most vulnerable calculations (Neuberg, 2009). Wors e, such arguments imply that people in society (some of whom will die, bu t many of whom will not) are somehow unworthy of investment. Moreover, costs of care in the fi nal phase of life vary from one hospital region to longer than people who another by large amounts. Yet people treated in hi gh-cost locales live no Institute for Health Policy and sts considerably less (Dartmouth are equally ill but whose care co see also Appendix E). Clinical Practice, undated; rs and analysts, however, should center not The key question for health care policy make on costs, but on whether people nearing the end of life are receiving high-quality, effective health and supporting services and ailable to them reflects their whether the mix of services av needs and preferences. As detailed in this repor t, evidence suggests a mismatch between the services most readily available to people near th e end of life (acute care) and what they most often say they want (supportive se rvices) (Gruneir et al., 2007). ve chronic conditions or functional Meanwhile, a large number of Americans ha limitations—or both—which are associated with hi gher needs and, as a result, health care costs (Figure 1-1). The important message of this fi gure is that the nearly half of Americans c condition or functional limitati on account for only 14 percent (48 percent) who have no chroni t of Americans who have both chronic conditions of U.S. health care costs, whereas the 14 percen r 46 percent of these costs. Tw and functional limitations account fo o-thirds of this latter group further, according to an part of the Medicare population; are under age 65 and therefore not analysis commissioned for this study (Appendix E, Figure E-9), the proportion of Medicare able from 1978 to 2006 (most recent comparable spending in the year prior to death remained st data) despite rapidly rising health care costs overall. Physicians might be assumed to be in a bett er position than the average nonclinician to 1 It is therefore telling that when it judge the likely value of services provided near the end of life. much less aggressive treatments than they comes to their own care, many physicians choose offer their patients. A 1997 study comparing 78 pr imary care faculty and residents with 831 of their patients found that the physicians were much le ss likely than the patients to want five of six terminally ill (Gramelspacher et al., 1997). Fifty-nine percent of specific treatments if they were t preferences, while 31 percent had “moderate” the physicians had “least aggressive” treatmen treatment preferences. 1 health care system, the creation of the customer, and in a well-functioning “Value should always be defined around value for patients should determine the rewards for all other actors in the system. Since value depends on results, not achieved, not the volume of services delivered” (Porter, inputs, value in health care is measured by the outcomes 2010, p. 2477). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

40 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life D 1-3 I NTRO D UCTIO N ( U.S. osts (%) e e alth Care C o %) U.S. H ( Population FIGURE onditions a for people w ith chronic c w c t n i Populat 1-1 on and heal i t d functional n h care costs limitatio . s, 2010-2011 n n SOURC E E : Appendix , Table E-1. E E personal es lthough fe w A addressed t h e subject, a h scientific s w n A tudies have eth s n s ay by Ken is t d ie like the r h st of us. W e ors “don’t d t sts that doc e a at’s unusu h M .D., sugg e m a e m Murray, l about the 2 (Murray, 20 o most Am 0 m uch treat m h t e m ent they ge t compared t 11). e ricans, but h ow little” t not how m 7 In a surv a a m ns, most ( a 65 physici percent) w a nted pain m 7 ey of some a edications, ore than 80 m a t n n ydration, a h enous (IV) h v v ics or intra t n d fewer th n quarter t o n a n ted antibio t n 10 perce a o a third wa 03). Likewi t 0 llo et al., 2 a c ardiopulmo n ary resusci 0 c wanted ation or me a tilation (G n n chanical ve n t se, a b elieved “it 96 percent S c ertified U. found that s v ey of som e i s . physician S 2011 sur i s v b e 500 boar d - c p r ter s m r l for serious e y ill patient ortant to e n s eans a sho u l u ality of lif e more im p hance the q m , even if it n o extend li a very medic a e e “through f i le only 4 p e l f life,” wh t v rcent belie e v e important t ed it is mor e e ” (Regence e interven l Journal, 2 a t and Nation a 11, p. 2). 0 Foundation t ion possibl e 0 p n s e B le understa s rms of per e d d the worl e nce, famili e onal experi s d largely in t e p ecause peo B e n s of a loved one ten e suffered th e y aspects of care that w e s d e attribute an y nt e s painful lo that hav e to — needed im urn r k nowledge hich they — h ave direct k t factors of wrong o r w o rovement t p w o h p t the drastic of the ill f o f n flicting req u various ca r n ut what e settings, c r o irements o u n ess, the co n onfusion ab h n e ey made w e h n lt out of co decisions th e in , the n s clinician g the trol. People s were telli n m en events f ations may r l z e that their g ely from sy s difficulties u temic prob these sit u r esulted lar g l z not recogni ems s s s . Addressin g m ic factors i s the aim o f i in need o f fundamen t o this report. g such syste m f t al solution 2 c e at the Univ n n family medici t professor of n linical assista c h e y is a retired a h ern California e rsity of Sout . His a Dr. Murr n American Es a The Best Z published in t een republish a (Murr quare S b s b S s t essay, firs ócalo Public Z ed in y, 2011), has ays and w w idely excerpt e s e p ular media. p d and republi s hed in the po 2012 P P D D RRECTE UNCO Y: P PROOFS CO TION A A EPUBLIC R R Copyright © National Academy of Sciences. All rights reserved.

41 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 1-4 WHY THIS STUDY IS IMPORTANT NOW the considerable body of existi ng work on this topic, the In contemplating an addition to that make this new study particularly timely: IOM took note of a number of contextual factors • the increasing number of elderly American s, including those with some combination of frailty, significant physical and cognitive disabilities, multiple chronic illnesses, and functional limitations; • growing cultural diversity of the United St ates population, which makes it ever more important for clinicians to approach all pa tients as individuals, without assumptions about the care choices they might make; e certain population groups; ss to care that disadvantag structural barriers in acce • es patients and families need most and the services a mismatch between the servic • they can readily obtain; • palliative care services not keep ing pace with the growing demand; • wasteful and costly systemic problems, in cluding perverse financial incentives, a ssures that limit communication, and a lack fragmented care delivery system, time pre on across programs; and of service coordinati of the current system the resulting unsustainable growth in costs • over the past several decades. ND APPROACH STUDY CHARGE A 21-member committee comprising experts in To conduct this study, the IOM assembled a clinical care, aging and geriatrics, hospice and rics, consumer advocacy, palliative care, pediat ealth care financing, law, and ons, clinical decision making, h spirituality, ethics, communicati public policy (see Appendix G for biographical sk etches of the committee members). Co-chairs of the committee were Philip A. Pizzo, M.D., former dean of the Stanford University School of mptroller general. The charge to the committee Medicine, and David M. Walker, former U.S. co is presented in Box 1-1. shes to remain anonymous and whose This study was supported by a donor that wi e selection of the co- played no role in th identity was unknown to the committee. The sponsor chairs or members of the committee or in the committee’s work. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

42 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life INTRODUCTION 1-5 BOX 1-1 Study Charge The IOM will conduct a consensus study that will produce a comprehensive report on the current state of medical care for persons of all ages with a serious illness or medical condition who may be approaching death and who require coordinated care, appropriate personal communication (or communication with parents or guardians for children), and individual and family support. The committee will assess the delivery of medical care, social, and other supports to both the person approaching death and the family; person-family-provider communication of values, preferences, and beliefs; advance care planning; health care costs, financing, and reimbursement; and education of health professionals, patients, families, ill also explore approaches to advance the field. employers, and the public at large. The study w Specifically, the committee will: 1. Review progress since the 1997 IOM report Approaching Death: Improving Care at the End of Life and the 2003 IOM report, When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. The committee will assess major subsequent events and recommendations that have been implemented as well as those that were not implemented along with remaining challenges and opportunities. 2. Evaluate strategies to integrate care of thos e with serious illness or medical condition who may be approaching death into a person- and family-centered, team-based framework. Demographic shifts, cultural changes, fiscal realities, and the needs of vulnerable populations will be considered as will advances in technology that affect the provision of care in different settings, most notably in the home. Families are a vital component of the healthcare team, and the financial and other ramifications for families and society will be considered. 3. Develop recommendations for changes in policy, financing mechanisms and payment and measurement, and clinical and supportive practices, workforce development, research care. These recommendations will align care with individual values, preferences, and beliefs and promote high-quality, cost-effective care for persons with serious illness or medical condition who may be approaching death, as well as with their families. 4. Develop a dissemination and communication strategy to promote public engagement understanding, and action. This strategy will need to consider the fears and anxieties surrounding care for patients who may be approaching death as well as functional dependency, aging and death, and cultural diversity in values, preferences and beliefs. on both scientific evidence and expert The committee’s recommendations are based committee reviewed the most recent, powerful, judgment. In preparing its recommendations, the and salient evidence that should reshape the U.S. a pproach to care near th e end of life. Because em are undergoing often dramatic changes, in so many aspects of the nation’s health care syst Affordable Care Act of 2010, the committee had to part as a result of the Patient Protection and rely in some cases on preliminary evidence rath er than definitive reports. The committee also the evidence through the voices and stories of sought to achieve a deeper understanding of people willing to share their curre addition to holding six meetings nt, direct experiences. Thus, in among its members, the committee received input from patients, family members, clinicians, and active web portal to activities and through an advocates through public workshops and additional which 578 comments were submitted (see Appendix A). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

43 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 1-6 , In conducting this study, the committee used the definitions for palliative care , hospice specialty palliative care shown in Box 1-2. Additional end-of-life care , basic palliative care , and definitions relevant to this study are provided in the glossary following Chapter 6. This study also was guided by the principles listed in Box 1-3. BOX 1-2 Key Definitions • Care that provides relief from pain and other symptoms, supports quality Palliative care: of life, and is focused on patients with serious advanced illness and their families. Palliative care may begin early in the course of treatment for a serious illness and may be delivered in a number of ways across the continuum of health care settings, including in the home, nursing homes, long-term acute care facilities, acute care hospitals, and outpatient clinics. Palliative care encompa sses hospice and specialty palliative care, as well as basic palliative care (see below). • Hospice: “A service delivery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears” (NQF, 2006, p. 3). • Palliative care that is delivered by health care professionals Specialty palliative care: who are palliative care specialists, such as physicians who are board certified in this specialty; palliative-certified nurses; and palliative care-certified social workers, pharmacists, and chaplains. Palliative care that is delivered by health care professionals who Basic palliative care: • are ary care clinicians; physicians who are not palliative care specialists, such as prim disease-oriented specialists (such as oncol ogists and cardiologists); and nurses, social workers, pharmacists, chaplains, and others who care for this population but are not certified in palliative care. End-of-life care: • Refers generally to the processes of addressing the medical, social, emotional, and spiritual needs of people who are nearing the end of life. It may include a disease specific interventions a well as range of medical and social services, including palliative and hospice care for those with advanced serious conditions who are near the end of life. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

44 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life INTRODUCTION 1-7 BOX 1-3 Guiding Principles for This Study All people with advanced illness who may be approaching the end of life are entitled to • access to high-quality compassionate, evidence-based care, consistent with their wishes, that can reasonably be expected to protect or improve the quality and length of their life. Ensuring that access and delivering that care humanely and respectfully is a central clinical and ethical obligation of health care professionals and systems. “All people with advanced illness” encompasses all age groups—from neonates, to • children, to adolescents, to adults, to the elderly. “Patient-centered” and “family-oriented” care is designed to meet physical, cognitive, • social, emotional, and spiritual needs, regardless of a patient’s age or infirmity; it takes into account culture, traditions, values, beliefs, and language; and it evolves with patient and family needs. In this report, “family” means not only people related by blood or marriage but also close • friends, partners, companions, and others whom patients would want as part of their care team. As palliative care leader Ira Byock expresses it, family includes all those “for whom it matters.”* • This report’s use of the term “vulnerable populations” goes beyond the conventional usage, which applies to people from ethnic, cultural, and racial minorities; people with low educational attainment or low health literacy; and those in prisons or having limited access to care for geographic or financial reasons. Here it includes people with serious illnesses, multiple chronic diseases, and disabilities (physical, mental, or cognitive); the frail elderly; and those without access to needed health services. In this latter sense, almost all people nearing the end of life can rightly be considered a “vulnerable population.” • Near the end of life, clinical care is not a person’s sole priority. Patients and families may be deeply concerned with existential or spiritual issues, including bereavement, and with practical matters of coping. Appropriate support in these areas is an essential component of good care. e care and communication with patients The knowledge and skills that enable effectiv • and families are needed across many different health professions, among generalists as well as specialists. Honest and transparent communication about death and dying— between loved ones, between patients and clin icians, and between policy makers/media and the public—is essential to creating a tr uly compassionate context for high-quality end-of-life care. • Measurement of the quality of care for the sickest and most vulnerable patients and their families is necessary to ensure access to and receipt of the highest-quality care, to contain costs. Measurement systems especially given current intense pressures should be transparent and foster accountability of services and programs. Innovative, well-designed biomedical, c linical, behavioral, organizational, and health • policy research is needed to further improve patient-centered outcomes and ensure system sustainability. _______________ *http://www.dyingwell.org/springer.htm. in this report are intended first and The findings and recommendations presented foremost to address the needs of patients and d assist policy makers, families. They also shoul es, leaders of health ional and credentialing bodi clinicians in various disciplines and their educat ers, public and private funders, religious and care delivery and financing organizations, research PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

45 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-8 DYING IN AMERICA nalists, and members of the interested public in community leaders, advocates for better care, jour people nearing the end of life and the steps learning more about what constitutes good care for necessary to achieve such care for more patients and families. In taking on this issue at this time, the committee follows in the path of many ng the members of past IOM committees whose compassionate and thoughtful people, includi work resulted in the following reports: • Approaching Death: Improving Care at the End of Life (IOM, 1997); • (IOM, 1999); Ensuring Quality Cancer Care Improving Palliative Care for Cancer (IOM, 2001b); • When Children Die: Improving Palliative and End-of-Life Care for Children and • (IOM, 2003); Their Families • Relieving Pain in America: A Bluepr int for Transforming Prevention, Care, Education, and Research (IOM, 2011); and Care: Charting a New Course for a System in Crisis Delivering High-Quality Cancer • (IOM, 2013). on improving the quality of care (especially In addition, the IOM’s series of reports Crossing the Quality Chasm [IOM, 2001a] and the work of the Roundtable on Value and Science-Driven Health Care) prov ation for working toward a system that ide guidance and inspir and families together with their health care provides the right care—as determined by patients team—when and where it is needed at a price that is affordable and sustainable. This committee’s aim was to build on this past work and to bring compassiona te and pragmatic new fecting care for American thinking to bear on the persistent problems af s living with advanced illnesses and nearing the end of life. STUDY SCOPE This committee’s charge (Box 1-1) was to exam ine “medical care for persons of all ages with a serious illness or medical condition who may be approaching death.” While this may ters for the study was actually d assignment, establishing parame appear to be a clearly define ously infeasible for the committee to examine rather complicated. On the one hand, it was obvi om their earliest stages and manifestations or the entire spectrum of care for chronic illnesses fr the full dimensions of frailty. This constraint imposed one limitation on the scope of the study, ls with progressive chronic even though subsets of individua and debilitating conditions are highly relevant to the considera tion of care in the final phase of life. On the other hand, the committee did not want to define the population of interest to o narrowly or arbitrarily and icians—who do not consider themselves to be thereby exclude people—or their families or clin erly narrow definitions of “who is dying” fail any pragmatic “approaching death.” Further, ov test, as the uncertainties of making prognoses amply attest. on of a 6-month prognosis if the fit set an eligibility criteri In 1982, the Medicare Hospice Bene disease runs its normal course. The legislation is meant median life never defined whether th expectancy or that all persons must be dead w inherent limitations of ithin 6 months. Given the s are hard pressed to say which individual patients will live prognostication, health care provider ve illnesses that are who enter hospice must ha 6 months or less. If the policy that all persons PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

46 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-9 INTRODUCTION certain to be fatal within 6 months is strict ly enforced, access to hospice will be extremely limited. On the other hand, expanding hospice serv ices to include persons who would live for years would have important financial implicatio ns. Thirty years ago, the 6-month limit might have had some, although weak medical justificat ion because hospices served primarily people with cancer whose disease progr ession could be projected fair ly accurately. Today hospices serve people with many different diagnoses that follow various and often unpredictable trajectories. With good care, even people who ar e very ill may survive for many months or several years. The time frame for illnesses or conditions that ultimately will prove fatal is often considerably longer than 6 months and proceeds at fferent individuals. a different pace for di -life” or “terminally ill” category—especially given Assigning people to an “end-of prognostic uncertainty—also creates undesirable social and personal challenges. Although patients, families, and clinicians may not consider particular individuals—or themselves—to be “dying” (thus the often preferred formulation “livi ng with cancer” or “living with heart disease”), they still need the kinds of intense manageme nt of pain and other symptoms, psychological support, ancillary services, and family suppor ts provided by hospice a nd palliative care programs. The committee believes the timing of death is a much less important consideration at are now causing distress or than whether the person is livi ng with a set of conditions th determined in the context of disability and thus needs services that address those problems, as need and not prognosis. The real challenge to desi gn models of quality and affordable care that fit the variable trajectories and needs of seriously ill people who are nearing the end of life and their family caregivers. The same definitional quandary face d the authors of the 1997 IOM study Approaching , among many others (Hui et al Death ., 2012). That committee, like this one, recognized that its recommendations applied to people “for whom death is imminent and those with serious, eventually fatal illnesses who may live for some time” (IOM, 1997, p. 7). That committee’s rred to as dying are often thought to be likely to die within a sense however, was that “those refe few days to several months,” and it generally fo cused its attention on th at group, rather than on ss predictable and might people with “an incurable, terminal or fatal illn ess...whose deaths are le not come for years” (IOM, 1997, p. 27). The present committee’s resolution of this definitional dilemma is different in character linician, confronted with an incr from that of the practicing c easing number of patients with not one but several serious and debil in prognoses and trajectories. itating conditions that have uncerta For clinicians, the principle of patient-centeredness must remain paramount. Even though 3 they clinicians may be unable to predict the precis dual patient’s illnesses, e course of an indivi can nevertheless demonstrate “qualities of compassion, empathy, and responsiveness to the needs, values, and expressed preferences” of the individuals and families in their care (IOM, 2001a, p. 48). This report similarly concentrates on the population whose medical condition puts them recognizes that many of at risk of death in some loosely defined “near future.” The committee the actions and systemic changes that would improve care for people nearing the end of life would be of broad benefit to many other patient groups, especially those with advanced illnesses retain the highest possible and the functional limitations that accompany frailty, helping them of life in their rema degree of functioning and quality ining lifetimes, however long they may be. mmends that would affect large numbers of Examples of the improvements the committee reco 3 (from either 2004 or ture found 386 articles palliative care oncology litera A recent review of the supportive and 2009) that used the term “end of life,” but not one provided a definition (Hui et al., 2012). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

47 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-10 DYING IN AMERICA patients are those supporting evidence-based services, strengthened patient-clinician relationships, coordination of se rvices, patient-centered and fam ily-oriented care, and the free flow of information, as well as other system feat ures considered hallmarks of high-quality care (IOM, 2001a). However, the charge to the comm ittee did not encompass this broader patient population. Finally, although the constellat ion of health challenges leading to death commonly ee understood the problem of end-of-life care to confront people of advancing age, the committ e: infants die, most often of heritable or congenital disorders be relevant throughout the life cycl or sudden infant death syndrome; injuries ar e the leading cause of death for children; by than 70 percent of deaths; adolescence and young adulthood, acci dents and violence cause more by age 45, cancers are the leading cause of death; and by age 65, heart disease is the leading killer (Heron, 2013). No age group is immune from death. The improvements in care and communication that would help population groups most commonly facing the end of life must, therefore, be extended to those of all ages. SEVENTEEN YEARS OF PROGRESS nd-of-life care system ve the vision of an e While much more progress is needed to achie compassion, economic value, sustainability, and affordability, characterized by high-quality care, the committee wishes to acknowledge and even cele brate the progress made over the past decade and a half. When the and Approaching Death reports were published in 1997 When Children Die and 2003, respectively, they contai ned a total of 19 recommendations. These recommendations are summarized in Appendix B, along with in formation on subsequent progress and remaining gaps. e resulted from aggressive public- and A great many improvements in end-of-life car private-sector efforts. Notabl e among these was the work of two large foundations—the Robert 4 Wood Johnson Foundation (RWJF) and the Soros Foundation thr ough its Project on Death in 5 —which together provided millions of dollars to support professional America (PDIA) services delivery; the creation of models of care and their education; research on health diffusion; and public engagement, media, and po licy initiatives. Dozens of national and regional well. The results of the Study to Understand foundations made important contributions as sks of Treatments (SUPPORT) galvanized many Prognoses and Preferences for Outcomes and Ri of these efforts (Connors et al., 1995). In brie f, this large and rigorous multiyear project demonstrated unequivocally that the “solutions” to the problem of end-of- life care that had been the experiences of dying people, in part nge clinical practice or promoted for years would not cha because of the powerful incentives aligned against them. New approaches were needed. tions, advocacy organizations, and local Major professional and provider organiza coalitions have actively supported care improveme nts and public awareness. For example, in a 4 RWJF’s 10-year, $170 million investment in improving end-of-life care relied on a three-part strategy: improving clinicians’ knowledge of and skills in care for the dying, encouraging institutional and policy changes that would -life care, and engaging a broad range of social institutions and leaders in facilitate the provision of good end-of vironment for change creating a supportive en /reports/reports/2011/rwjf69582). (http://www.rwjf.org/content/dam/farm 5 e culture and experience of dying through initiatives in “The mission of PDIA is to understand and transform th research and scholarship, the arts and humanities, through innovations in provision of care, through public and professional education and through public policy” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1282198/). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

48 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life INTRODUCTION 1-11 American Public Health policy statement released in November 2013, the Association (APHA) addressed care for people near th e end of life from a public health perspective, calling the burden ealth problem” (APHA, experienced by those with advanced life-limiti ng conditions a “public h these individuals be addressed through 2013). APHA recommended that the needs of planning, use of hospice and palliative care, improvements in pain management, advance care h the generalist and specialty care coordination, health professi onal education and training (at bot levels), and improvements to hospice and pa lliative care financing and policy. As another example, RWJF’s Last Acts campaign involved more than 800 partner organizations, from gations and hospices, to the National Association for the individual religious congre e American Medical Association (De Milto, Advancement of Colored People (NAACP), to th icians, researchers, and commun ity leaders worked to move 2002). Thousands of individual clin the field forward. State government offices and agencies, many of them participants in the RWJF-funded Community State Pa rtnerships Program to Improve End-of-Life Care, achieved ernment, especially through the Health Care various policy advances, as did the federal gov Services [CMS]), the Medicare & Medicaid Financing Administration (now the Centers for Agency for Healthcare Research and Quality, a nd the National Institute for Nursing Research within the National Institutes of Health (NIH). DYING IN AMERICA: 2014 Several key aspects of dying in America toda y should be noted as c ontext for this study. Site of Death Approaching Death “Death is not what it used to be,” the report observed in 1997. “In the has been widely superseded by an institutional, United States, death at home in the care of family dying” (IOM, 1997, p. 33). Although the proportion of professional, and technological process of cent years, the last fe people who die in hospitals has declined in re w months of life are characterized by frequent hospital and intensive ca llment in hospice often re stays; as noted, enro occupies just the last few days of life. Am ong Medicare fee-for-servi ce beneficiaries, the clined from 33 percent in 2000 to 25 percent in percentage who died in acute care hospitals de 2009 (Teno et al., 2013; Goodman third of Medicare deaths et al., 2013). Also in 2009, a occurred in private residences, 28 percent in nursing homes, and approximately 14 percent elsewhere (Teno et al., 2013). cal conditions and the nother, depending on lo These percentages vary from one locale to a availability of nonhospital services, such as nursing homes (Gruneir et al., 2007). The growing homes—approaching 40 percent in Minnesota and Rhode Island as number of deaths in nursing of 2007—is difficult to track, because many studies omit these residents. Nevertheless, the pattern of institution-based death appears to have changed to a considerable extent, in part services, which help families provide appropriate because of the increased availability of hospice e remains a consistent preference in population care at home near the end of life. Dying at hom surveys and patient interviews (Teno et al., 2013). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

49 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-12 DYING IN AMERICA Epidemiologic Patterns Two and a half million Americans died in 2011, according to the most recent data from the Centers for Disease Control and Prevention (Hoyert and Xu, 2012). The nation continues to Approaching Death report was released make progress on key mortality figures since the 1997 s in life expectancy that began around 1900 have (Table 1-1). In general, the dramatic gain continued. Life expectancy was 4.8 years long er for women than for men in 2011, although the gap between the sexes has been shrinking (Hoye rt and Xu, 2012). Life expectancy for whites (non-Hispanic) was 2.4 years less than that for Hisp anics and 3.7 years more than that for blacks. TABLE 1-1 Improvements in U.S. Life Expectancy, 1995-2011 Overall Improvement (%) Indicator 1995 2011 Average life expectancy at birth 3.8 75.8 years 78.7 years SOURCE: For 1995: IOM, 1997, citing Anderson et al., 1997; for 2011: Hoyert and Xu, 2012. Table 1-2 presents information about deat hs among U.S. children. Infant mortality health concern: 54 of the wo rld’s 224 countries have lower remains a serious national public te in the United States (CIA, 2014). Still, the estimated 2013 infant mortality rates than the ra U.S. rate fell 12 percent between 2005 and 2011, part ly because of a decline in premature births (MacDorman et al., 2013). In general, the number of pediatric deaths due to trauma and other acute causes has declined, while the number attri c conditions has risen. butable to complex chroni A third of pediatric deaths are among children with one or more complex chronic conditions. Overall, children and adolescents “live with and di ten-rare diseases that e from a wide array of of require specialized care”; as noted earlier, many of these conditions are different from those that affect adults (see Appendix F). TABLE 1-2 Deaths among U.S. Infants and Ch ildren, Rates and Causes, 2009-2010 Indicator Ages 10-14 Ages 5-9 Infants Ages 1-4 2,330 2,949 Number of 24,586 4,316 deaths 14.3 per 11.5 per 100,000 26.5 per 100,000 Crude 614.7 per 100,000 100,000 live births death rate Accidents Accidents Accidents Leading Prematurity and (unintentional (unintentional (unintentional causes of low birthweight, injuries), congenital injuries), cancer, injuries), death congenital congenital problems, problems, homicide cancer, problems, homicide suicide, pregnancy homicide complications, sudden infant death syndrome SOURCE: Heron, 2013. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

50 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life INTRODUCTION 1-13 ited States are shown in Table 1-3. Heart The 10 leading causes of deaths in the Un disease and cancer together account for approximately The leading causes vary half of the total. among different population groups defined by ag e, race/ethnicity, and other factors. Leadin g Causes of Death, United States, 2010 TABLE 1-3 Cause Percent of Deaths Heart disease 24.2 nant neo ( mali g p Cancer lasms ) 23.3 irator y diseases 5.6 p Chronic lower res 5.2 ( e. g ., stroke ) Cerebrovascular diseases j uries 4.9 Unintentional in Alzheimer’s disease 3.4 Diabetes mellitus 2.8 2.0 ) hritis p ., ne e. y diseases ( g Kidne p 2.0 neumonia Influenza and Suicide 1.6 SOURCE: Heron, 2013. At least seven of the causes of death list ed in Table 1-3 are chronic conditions, the a and pneumonia, and suicide. Nonetheless, exceptions being unintentional injuries, influenz nza and pneumonia are most deadly among people whose health is taking into account that influe already compromised in some way, as well as th e contribution of alcohol use, depression, and other such factors to suicide and unintentiona l injuries (fires, falls , drownings, vehicle and ses are linked in some way to chronic health problems. pedestrian accidents), all 10 cau The Changing U.S. Population aging and growing diversity of the U.S. Dying in America today reflects the overall population, as well as the pa of certain individuals. rticular vulnerability Aging An increase in the number and proportion of Americans aged 65 and over has been a Medicare came into being. Three times the dominant demographic trend since long before percentage of Americans pass their 65th bi rthday today as was the case in 1900, and the proportion of the population reaching age 85 is 48 times larger than a century ago (AoA, 2012). cans over age 65 is on an upward Indeed, the percentage of Ameri trajectory from 9 percent in 1960 to a projected 20 percent in 2050 (Table 1-4). TABLE 1-4 Growth in the U.S. Elderly Population, 1960 to 2050 (projection) Age Group 1960 2000 2010 2050 (est.) 35 million 65+: number (% of total population) 16.6 88.5 million 40.3 (19.8) million million (12.4) (13.0) (9.2) 4.2 929,000 85+: number (% of total population) 19 million 5.5 million million (0.5) (4.2) (1.7) (1.5) SOURCE: For 1960 and 2000: He et al., 2005; for 2010: Bureau of the Census, 2010; for 2050: Bureau PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

51 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-14 DYING IN AMERICA of the Census, 2008. Greater longevity comes at a cost. With increases in life expectancy, the burden of serious illnesses among the nation’ s Medicare-eligible (65 and olde r) and old-old (85 and older) populations has risen markedly. Two-thirds of people aged 65 and older suffer from serious, multiple chronic conditions (CDC, 2013). By cont rast, 31 percent of those aged 45 to 64 and only 6 percent of those aged 18 to 44 were tr eated for two or more chronic conditions in 2009 (Machlin and Soni, 2013). Table 1-5 shows the impact of having multiple chronic conditions on health care costs. In general, Medicare spending rises dramatically with increases in the number of chronic or more such conditions account conditions. Beneficiaries with five ed for nearly two-thirds of Medicare dollars spen t in 2007 (Anderson, 2010). TABLE 1-5 Average Medicare Expenditures per Fee- for-Service Beneficiary, by Number of Chronic Conditions, 2010 Average Expenditure ($) Number of Chronic Conditions 0-1 2,025 2-3 5,698 4-5 12,174 32,658 6 or more NOTE: The 15 chronic conditions included in this analysis are high blood pressure, high abetes, heart failure, chronic kidney disease, cholesterol, ischemic heart disease, arthritis, di depression, chronic obstructive pulmonary disease, Alzheimer’s disease, atrial fibrillation, cancer, osteoporosis, asthma, and stroke. SOURCE: CMS, 2012. e increases in certain In the future, the aging U.S. population is like ly to experience larg diseases that are costly to treat. Without more effective methods for prevention and early treatment, conditions such as card iovascular disease (Pandya et al ., 2013) and cancer are likely to consume an increasingly large share of health care resources because even with stable or slightly rates e in the higher-risk age groups means the of illness, the growing number of peopl falling w cases of cancer is expected to increase by of cases will grow. Thus, the number of ne number 45 percent between 2010 and 2030 (IOM, 2013). The number of Americans with Alzheimer’s dise ase and related dementias also is rising 2010 to 8.7 million in 2030 (HHS/ASPE, 2013), rapidly, expected to grow from 5.5 million in and the prevalence of Parkinson’s the next 30 years. In 2010, the disease is expected to double in annual costs of caring for Americans with deme ntia, including both medi cal and nursing home care and unpaid care (mostly by family memb ers), were estimated at $157-215 billion, d et al., 2013); for Parkinson’s disease, the depending on how informal care was valued (Hur estimated direct and indirect costs totaled almost $21 billion (Kowal et al., 2013). These high declining health, despite costs can accumulate over a number of years of the tendency for the ease among the oldest members of th e population in the last year intensity of medical care to decr of life (see Appendix E). increase with age and as death approaches Functional limitations and disabilities likewise sult is a growing need for nursing home and (Chaudhry et al., 2013; Smith et al., 2013). One re other long-term care placements. The number of Americans needing long-term care is expected PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

52 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life INTRODUCTION 1-15 to more than double, reaching 27 million, by 2050 (Senate Commission on Long-Term Care, 2013). Living for extended periods with serious diseas e and disability need not be inevitable l Long-Term Care Survey show that disability features of aging, however. Data from the Nationa rates can be decreased (NIA, 2010), while data from the Survey of Income and Program Participation show these rates stabilizing since 2000 (Kaye, 2013) . In addition, evidence from the lity of being cognitively impaired declined Health and Retirement Study indicate that the probabi from the mid-1990s up until at least 2004, and there is reason for cautious optimism that better control of stroke and heart diseas e will contribute to reductions in new cases of dementia as well provements include not only better clinical (Rocca et al., 2011). Factors behind these im assistive technologies, and improvements in treatment but also behavioral changes, r a broad array of interventions—beyond health socioeconomic status that suggest a need fo care—to reduce the burden of di sability on older Americans. These improvements are masked, r adults, which will result in increased need however, by the rapidly increasing number of olde for services despite stable or lower disability rates. Growing Diversity The ethnic and cultural compos ition of the U.S. population is changing. Much has been said about the rapidity with which some U.S. cities and states are becoming “majority minority” places. Many clinicians today and certainly those of the future will care for people of differing nguage backgrounds and literacy/h ealth literacy levels; differing ethnic, cultural, religious, and la traditions and rituals around dying; differing levels of comfort with making critical decisions; differing expectations of the health care system ; and differing family compositions, roles, and resilience of families ar responsibilities. The strengths, weaknesses, and e especially important factors, given the long-term trend to move ever more complex care to the home. Such factors can the risk of poor-quality, high-cost care in the increase particular risks—in the present context, final phase of life—for population groups, or even particular individuals. Vulnerable Individuals Many people are among those at heightened ri sk of poor-quality, high-cost end-of-life bove, the following individuals are particularly care. Beyond the demographic factors discussed a vulnerable: infants and children with congenital diso • rders, genetic diseases, or cancer; mplex chronic conditions; • people of any age with co tions, functional limitations, and frailty; the elderly who have multiple chronic condi • • ognitive impairments, such as stroke, people who have mental disorders or c Alzheimer’s disease, or other dementias; and ss to health services because of geography, immigration people with inadequate acce • rance, incarceration, and structural features status, low income and lack of health insu of the health care system. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

53 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 1-16 RESEARCH NEEDS Areas in which additional research is need ed are cited in Chapters 2, 3, and 5. In 2013, the National Institute of Nursing Research—the l ead institute within NIH for research on end-of- life care—published a summary of re search trends and funding in e nd-of-life and palliative care for the years 1997-2010 (NINR, 2013). This summary was based on published research supported by both public and private entities. While the report notes that the scientif ic literature in this area has tripled sin ce 1997 and totaled more than 3,000 publications as of 2010, it cites gaps as well. In 1997, most research in end-of-life and pa lliative care was privately funded. While the amount of federal funding for such research has increased dramatically since 1997—from all proportion of the nation’s $4.2 million to $61.55 million in 2010— it still represents a very sm annual investment in biomedical research. Re searchers who want to study end-of-life and palliative care topics face an ongoing difficu lty in obtaining NIH fundi ng. To evaluate the significance of these proposals adequately, th e various NIH institutes would need approval end-of-life questions or larger numbers of people with end-of- bodies (study sections) devoted to life and palliative care expertise serving on existing study sections. SUMMARY Despite considerable progress, significant prob lems remain in providing end-of-life care for Americans that is high-quality and compa eir choice while being ssionate and preserves th challenges apply generall y to individuals with affordable and sustainable. Many of these same chronic and complex medical and mental disord ers and reflect the current fragmentation and limitations of the U.S. health care system—a system currently undergoing profound change. Significant opportunities exist to improve and align financial and programmatic incentives across health and social services pr ograms, develop incentives to implement program models that have demonstrated how to achieve be tter care at lower cost, to better target complex s to individual needs, and to use social services to ease the care interventions and tailor resource some cases, additional research is needed, burden on families and enhance quality of life. In of a “bad death.” In especially toward improving clinicians’ ability to id entify individuals at risk addition, greater oversight is needed to ensure qu ality care, control costs, increase transparency, and ensure accountability. ed changes in the current health care A national strategy for accomplishing the need delivery system would necessarily be broad-based, of the health care taking into account features system as it is currently evolving, the way car e is provided and the improvements needed, the and the awareness and way health care providers are trained and what they are taught to do, e to support and advocate for these changes. knowledge that would cause the public at larg r—and difficult work of—breaking down a range of Fundamental to this strategy is the need fo silos, for example, between “curative” and palliativ e care, between professional groups so as to foster interdisciplinary practice, and betw een traditional medical and social services. ould require the broad engagement of multiple Development of a specific strategy, therefore, w and social and supporting serv ices sector, as well as the actors in the health care field ly for practical assistance, spiritual support, organizations and institutions on which Americans re with life-limiting illnesses. Designing such a information, and advice as caregivers and as people ial participants is beyond the scope of this complex, multipart strategy involving so many essent PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

54 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-17 INTRODUCTION study, particularly given that the U.S. health system is undergoing so many changes. However, the insights offered in this report regarding pr oblems, challenges, and st rengths of the system may be a foundation on which many other effort s can build. These chal lenges and opportunities are discussed in detail in the following chapters. ORGANIZATION OF THE REPORT This report provides a detailed description of important aspects of the current U.S. health care system as they affect Americans nearing th e end of life. As noted, the system is changing llowing chapters, which re ly heavily on published substantially at present, meaning that the fo urate picture of U.S. evidence and analysis, are to some extent a snaps hot taken yesterday. An acc health care today has not yet developed, and what the system will be tomo rrow is not clearly in focus. Nevertheless, much has been learned to date that should enable the implementation of high-quality, cost-effective care that patients and families find compassionate and supportive of their values, goals, and preferences at the end of life. life services as they are currently delivered, focusing Chapter 2 describes end-of- importance of comprehensive advance care planning especially on the role of palliative care. The and improvements in traditional advance directives is discussed in Chapter 3. Chapter 4 of health professionals who care for people examines the workforce and educational needs nd payment systems, particularly those of 5 reviews the policies a nearing the end of life. Chapter at shape current patterns of care. Finally, public attitudes and beliefs Medicare and Medicaid, th education programs are reviewed about topics in end-of-life care and elements of potential public in Chapter 6. REFERENCES AoA (Administration on Aging). 2012. A profile of older Americans: 2012 . http://www.aoa.gov/AoAroot/Aging_Statistics/Profil e/index.aspx (accessed January 4, 2014). Chronic care: Making the case for ongoing care . Princeton, NJ: Robert Wood Anderson, G. 2010. ent/dam/farm/reports/r eports/2010/rwjf54583 Johnson Foundation. http://www.rwjf.org/cont (accessed July 3, 2013). Anderson, R. N., K. D. Kochanek, and S. L. Murp hy. 1997. Report of final mortality statistics, 1995. 45(11). Monthly Vital Statistics Reports APHA (American Public Health Association). 2013. APHA policy #20134—Supporting public health’s role in addressing unmet needs in serious illness and at the end of life. Washington, DC: APHA. http://www.apha.org/advocacy/policy/policysearch /default.htm?id=1450 (accessed August 5, 2014). and sex for the United States: 2010 to Bureau of the Census. 2008. Projections of the population by age 2050 . NP2008-T12. Washington, DC: Bureau of the Census. Bureau of the Census. 2010. . The older population: 2010. 2010 Census briefs http://www.census.gov/prod/cen2010/briefs/c2010br-09.pdf (accessed July 30, 2013). health in America— CDC (Centers for Disease Control and Prevention). 2013. The state of aging and 2013. -in-america-2013.pdf (accessed November 12, http://www.cdc.gov/aging/pdf/state-aging-health 2013). Chronic conditions among Medicare CMS (Centers for Medicare & Medicaid Services). 2012. beneficiaries. Baltimore, MD: CMS. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

55 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1-18 DYING IN AMERICA The World CIA (Central Intelligence Agency). 2014. C ountry comparison: Infant mortality rate. Factbook. https://www.cia.gov/library/publications/th e-world-factbook/rankorder/2091rank.html (accessed February 6, 2014). Chaudhry, S. I., T. E. Murphy, E. Gahbauer, L. S. Sussman, H. G. Allore, and T. M. Gill. 2013. Restricting symptoms in the last year of life: A prospective cohort study. JAMA Internal Medicine 173(16):1534-1540. Connors, A. F., N. V. Dawson, N. A. Desbiens, W. J. Fulkerson, L. Goldman, W. A. Knaus, J. Lynn, and D. Ransohoff. 1995. A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). 274(20):1591-1598. Journal of the American Medical Association Dartmouth Institute for Health Polic y and Clinical Practice. undated. Inpatient days per decedent during the last six months of life, by ge nder and level of care intensity, 2007 . http://www.dartmouthatlas.org/data/topic/topi c.aspx?cat=18 (accessed July 16, 2013). De Milto, L. 2002. Assessment of Last Acts program prov ides recommendations for future direction: Assessing progress and opportunities for the Last Acts initiative . http://www.rwjf.org/content/dam/farm/reports/pr ogram_results_reports/2002/rwjf65521 (accessed June 23, 2014). Gallo, J. J., J. B. Straton, M. J. Klag, L. A. Meoni, D. P. Sulmasy, N. Wang, and D. E. Ford. 2003. Life- Journal of nd do they express their wishes to others? sustaining treatments: What do physicians want a 51(7):961-969. the American Geriatrics Society Skinner, S. Chasan-Taber, and K. K. Bonner. 2013. Goodman, D. C., E. S. Fisher, J. E. Wennberg, J. S. ill patients: A Dartmouth Atlas brief on Medicare Tracking improvement in the care of chronically beneficiaries near the end of life. ts/EOL_brief_061213.pdf (accessed March 10, http://www.dartmouthatlas.org/downloads/repor 2014). M. Tierney. 1997. Preferences of physicians and Gramelspacher, G. P., X-H Zhou, M. P. Hanna, and W. Journal of General Internal Medicine 12(6):346-351. their patients for end-of-life care. Gruneir, A., V. Mor, S. Weitzen, R. Truchil, J. Te no, and J. Roy. 2007. Where people die: A multilevel approach to understanding influen ces on site of death in America. Medical Care Research and Review 64(4):351-378. He, W., M. Sengupta, V. A. Velkoff, and K. A. DeBarros. 2005. 65+ in the United States . http://www.census.gov/prod/2006pubs/p23-2 09.pdf (accessed July 30, 2013). Heron, M. 2013. Deaths: Leading causes for 2010. National Vital Statistics Reports 62(6). 2_06.pdf (accessed February 5, 2014). http://www.cdc.gov/nchs/data/nvsr/nvsr62/nvsr6 ices, Assistant Secretary for Planning and HHS/ASPE (Department of Health and Human Serv . zheimer’s Disease—2013 update Evaluation). 2013. National plan to address Al http://aspe.hhs.gov/daltcp/napa/NatlPlan2013.sh tml#intro (accessed November 12, 2013). 61(6). Hoyert, D. L., and J. Xu. 2012. Deaths: Preliminary data for 2011. National Vital Statistics Reports Hui, D., M. Mori, H. A. Parsons, S. H. Kim, Z. Li, S. Damani, and E. Bruera. 2012. The lack of standard definitions in the supportive a nd palliative oncology literature. Journal of Pain and Symptom Management 43(3):582-592. Mullen, and K. M. Langa. 2013. Monetary costs of Hurd, M. D., P. Martorell, A. Delavande, K. J. New England Journal of Medicine dementia in the United States. 368(14):1326-1334. Washington, Improving care at the end of life. Approaching death: IOM (Institute of Medicine). 1997. DC: National Academy Press. Ensuring quality cancer care IOM. 1999. . Washington, DC: National Academy Press. st Crossing the quality chasm: A new health system for the 21 IOM. 2001a. Washington, DC: century. National Academy Press. IOM. 2001b. . Washington, DC: National Academy Press. Improving palliative care for cancer of-life care for children and their families. When children die: Improving palliative and end- IOM. 2003. Washington, DC: The National Academies Press. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

56 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life INTRODUCTION 1-19 Relieving pain in America: A blueprint for tr IOM. 2011. ansforming prevention, care, education, and research. Washington, DC: The National Academies Press. Delivering high-quality cancer care: Char ting a new course for a system in crisis. Pre- IOM. 2013. publication copy. Washington, DC: The National Academies Press. Kaye, H. S. 2013. Disability rates for working-age adults and for the elderly have stabilized, but trends for each mean different results for costs. Health Affairs 32(1):127-134. Kowal, S. L., T. M. Dall, R. Chakrabarti, M. V. Storm, and A. Jain. 2013. The current and projected 28(3):311-318. economic burden of Parkinson’s disease in the United States. Movement Disorders MacDorman, M. F., D. L. Hoyert, and T. J. Mathew s. 2013. Recent declines in infant mortality in the United States, 2005-2011. NCHS Data Brief 120. http://www.cdc.gov/nchs/data/databriefs/db120.htm (accessed February 5, 2014). Machlin, S.R., and A. Soni. 2013. Health care expenditures for adults with multiple treated chronic conditions: Estimates from the Medi care Expenditure Panel Survey, 2009 . Washington, DC: CDC. http://www.cdc.gov/pcd/issues/2013/12_0172.htm (accessed February 5, 2014). Murray, K. 2011. How doctors die: it’s not like the rest of us, but it should be. Zocalo Public Square. octors-die/ideas/nexus/ (accessed March 1, http://www.zocalopublicsquare.org/2011/11/30/how-d 2014). NINR (National Institute of Nursing Research). 2013. Building momentum: The Scie nce of end-of-life and palliative care. A review of research trends and funding, 1997-2010. http://www.ninr.nih.gov/sites/www.ninr.nih.gov/f iles/NINR-Building-Momentum-508.pdf (accessed March 12, 2014). . Fact sheet. Disability in older adults NIA (National Institute on Aging). 2010. inOlderAdults%28NIA%29.pdf (accessed January http://report.nih.gov/nihfactsheets/Pdfs/Disability 4, 2014). Neuberg, G. W. 2009. The cost of end-of-life care: A new efficiency measure falls short of AHA/ACC Circulation: Cardiovascular Quality and Outcomes standards. 2:127-133. NQF (National Quality Forum). 2006. A national framework and preferred practices for palliative and hospice care quality: A consensus report. Washington, DC: NQF. Pandya, A., T. A. Gaziano, M. C. Weinstein, and D. Cutler. 2013. More Americans living longer with Health Affairs 32(10):1706- cardiovascular disease will increase costs while lowering quality of life. 1714. e in health care? Perspective. Porter, M. E. 2010. What is valu New England Journal of Medicine 363(26):2477-2481. Regence Foundation and National Journal. 2011. Living well at the end of life: A national conversation. http://syndication.nationaljournal.com/communicati ons/NationalJournalRegenceDoctorsToplines.pdf (accessed June 23, 2014). Rocca, W. A., R. C. Petersen, D. S. Knopman, L. E. Hebert, D. A. Evans, K. S. Hall, S. Gao, F. W. Unverzagt, K. M. Langa, E. B. Larson, and L. R. White. 2011. Trends in the incidence and prevalence of Alzheimer’s disease, dementia, and cognitive impairment in the United States. Alzheimer’s & Dementia 7(1):80-93. . Report to the Congress Senate Commission on Long-Term Care. 2013. http://www.chhs.ca.gov/OLMDOC/Agenda mmission%20on%20Long- %20Item%206-%20Co ssed December 2, 2013). eport%209-26-13.pdf (acce Term%20Care-%20Final%20R din, and K. E. Covinsky. 2013. Disability during the Smith, A. K., L. C. Walter, Y. Miao, W. J. Boscar JAMA Internal Medicine 173(16):1506-1513. last two years of life. Teno, J. M., P. L. Gozalo, J. P. Bynum, N. E. Leland, S. C. Miller, N. E. Morden, T. Scupp, D. C. care for Medicare beneficiaries: Site of death, Goodman, and V. Mor. 2013. Change in end-of-life Journal of the American Medical place of care, and health care transitions in 2000, 2005, and 2009. Association 309(5):470-477. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

57 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Copyright © National Academy of Sciences. All rights reserved.

58 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2 The Delivery of Person-Centered, Family-Oriented End-of-Life Care For most people, death does not come suddenly. Instead, dying is an inevitable result of one or more diseases that must be managed car efully and compassionately over weeks, months, or even years, through many ups and downs. This chapter examines the ways in which health care providers manage that process. Eviden ce shows that—regardless of whether curative ach often offers the best chance of maintaining treatments also are undertaken—a palliative appro the highest possible quality of life for the longe st possible time for those living with advanced serious illness. Death is not a strictly medical event. Id eally, health care harmonizes with social, psychological, and spiritual supports. Health care makes important contributions as patients near the end of life: it relieves pain, discomfort, a nd other symptoms and effects of disease; it can facilitate achieving maximum possible functioning; it can help alleviate depression and anxiety; te constructive family dynamics; and sometimes it can ease the burden on loved ones and facilita it can extend life for a pe e things by combining science with riod of time. It can achieve all thes ue needs of the indivi dual patient; and by taking compassion; by adjusting treatments to the uniq into account the patient’s and family’s spiritual interests, roles, and and cultural context, strengths. The committee believes, therefore, ca re of people nearing th e end of life should be preeminently patient-centered and family-oriented. The importance of family is emphasized through out this chapter. As articulated in the guiding principles presented in Chapter 1 (Box 1-3), the committee construes the term “family” es, fiancés, sign ificant others, relatives, in-laws, step-relativ broadly to encompass spouses, blood friends, caring neighbors, colleagues, fellow parish ioners or congregants, and other people with a personal attachment to the person with advanced serious illness—in other words, the people “for whom it matters.” Also emphasized throughout this chapter—as throughout this report—is the importance of providing the services needed by people with advanced serious illnesses in a coordinated way. This coordination can be accomplished through many different types of structures and payment schemes, and cultural and social arrangements, depending on available resources, delivery pattern fits all. preferences. No one service situation with respect to end of life: the This chapter begins by reviewing the current end-of life care de livery, including trajectories and symptoms of deat h; salient features of current y care, the problem of burdensome transitions the providers of care, the importance of primar rdinated care. Next is an challenge of unwanted and uncoo across care settings, and the examination of palliative care, including hospice, as an established approach to providing the PROOFS UNCORRECTED COPY: PREPUBLICATION 2-1 Copyright © National Academy of Sciences. All rights reserved.

59 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-2 best possible quality of life for people of all ag es who have an advanced serious illness or are likely approaching death. The chapter then looks at efforts to measure and report on the quality of core quality components. This is followed by a of care near the end of life, and suggests a set ognosis alluded to in Chapter 1. The chapter then focuses on discussion of the problem of pr family caregivers, who constitute a generally invisible, undertrained, financially and emotionally stressed, and growing workforce. After outlining research needs related to the delivery of patient-centered, family-oriente d end-of-life care, the chapte r ends with the committee’s findings, conclusions, and recommendation for broad-scale improvement in this area. REVIEW OF THE CURRENT SITUATION Trajectories and Symptoms Near the End of Life The Institute of Medi cine (IOM) report Approaching Death: Improving Care at the End of Life (IOM, 1997) depicts three prototypical trajectories ne ar the end of life: • a sudden death from an unexpected cause (such as a motor vehicle accident, myocardial infarcti on, or stroke); • with a terminal phase (such as cancer); a steady decline from a progressive disease and • an advanced illness marked by a slow decline with periodic crises and eventual ease or congestive heart failure). sudden death (such as chronic lung dis For children (as described in A ppendix F), the three most common trajectories near the end of life are sudden death (from trauma ), fluctuating declin e (such as worsening heart failure), and constant medical fragility (as w ith some neurologic impairments). To a patient or family, these categories ma y appear to overlap. A person dying suddenly problems; someone rious underlying health from an unexpected cause may have had se oy many good days; and a person with a generally experiencing a steady decline may also enj deterioration in health status. slow decline may suffer a sudden steep Another way to view trajectories near the end of life is to focus on functional status. In a were not disa uded 491 participants who initially bled, were at prospective cohort study that incl least 70 years old at the start of the study, and died during the 13-year course of the study, disabilities (or “restricting symptoms”) remain ed relatively constant from 12 months before y (Chaudhry et al., 2013). death until 5 months before death, when they began to increase rapidl Twenty percent of the study population demonstrated disability 1 year before death, 27 percent at 60 percent in the month before death. Similarly, in a study of 5 months before death, and nearly 8,232 decedents enrolled in the Health and Retirement Study between 1995 and 2010, the cent 2 years before death to 56 percent in the prevalence of disability increased from 28 per month before death (Smith et al., 2013b). is, it is difficult to predict As is emphasized later in this chapter in the section on prognos an individual patient’s disease or disability tr ajectory. While the course of a disease varies greatly from one individual to another, and people often have multiple diseases and debilitating likely patient needs based on patient life, it may be possible to identify conditions near the end of and disease characteristics, informing service delivery needs. At the individual level, the PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

60 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-3 advised to develop, fr committee believes health care providers are best equently review and revise, and implement care plans ta ilored to individual circumstances. influence personalized care plans include the disease Individual circumstances that al, and cultural environments and supports (e.g., process; the patient’s physical, social, spiritu difficulties in obtaining culturally and linguistic ally appropriate care); and the patient’s experience with both physical and psychological symptoms. Some of the major physical and psychological symptoms people face toward the end of life are identified in Approaching Death in a list that remains rele vant today (IOM, 1997, pp. 76-78): • pain; • diminished appetite and wasti ng (anorexia-cachexia syndrome); • weakness and fatigue (asthenia); • shortness of breath (dyspnea) and cough; nausea and vomiting; • difficulty swallowing (dysphagia); • bowel problems (constipation, diarrhea); • • dental problems, infections); mouth problems (dry mouth, sores, skin problems (itching, dryness, chappi ng, acne, sweating, sensitivity to touch, • pressure sores, dark spots); • tissue swelling (lymphedema); • accumulation of liquid in the abdomen (ascites); • confusion; dementia; • • anxiety; and depression. • Other problems experienced by many patients ne aring the end of life are not necessarily disease related but common to th e experience of aging. Examples include incontinence, falls and mobility problems, delirium, depression, and abuse and neglect. e face symptoms similar to those of adults. Studies of Children nearing the end of lif children with cancer have found the patient sympto ported by parents to be ms most frequently re pain, fatigue, dyspnea, change in behavior, and lo et al., 2010; Wolfe et ss of appetite (Pritchard al., 2000). xperienced by people with advanced serious The varied trajectories and symptoms e illnesses pose special challenges for health care providers, especially if the patient has multiple coexisting conditions. A drug or treatment prescr ibed for one condition may be contraindicated tions among drugs may occur. Moreover, the availability of for another; unexpected interac personal, physical, social, and other resources in fluences how care needs related to decreases in lenge noted also in s another important chal functional status are addressed. Box 2-1 highlight serious illnesses have dementia or cognitive Chapter 1: many elderly people with advanced impairments. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

61 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-4 DYING IN AMERICA BOX 2-1 Dementia as an Example of the Challenges in End-of-life Care Many elderly people in their final months or years have combinations of chronic diseases that include dementia. People with dementia cannot consistently communicate effectively with health care workers or participate actively and routinely in their care. A study of 163 elderly, ent of an academic medical center found that non-critically ill patients in the emergency departm 37 percent had cognitive dysfunction (Carpenter et al., 2011). Such impairments hamper clinicians’ efforts to obtain accurate medical histories, make timely and accurate medical diagnoses, and initiate proper treatment (Han et al., 2011). Such impairments also can prevent patients from adhering to discharge instructions designed to prevent future problems and emergencies (Hustey et al., 2003). Dementia may add another layer of complexity to disparities in medical decision making among racial and ethnic minority groups. A systematic review of 20 articles on end-of-life care among African Americans, Hispanics, Asian Amer icans, and Caucasians with dementia found treatment differences at the end of life that may be due to “the double disadvantage of dementia and ethnic minority status” (Connolly et al., 2012, p. 359). The study found that Asian Americans and African Americans with dementia were more likely than others to initiate artificial nutrition, and African Americans were more likely to receive blood transfusions, mechanical ventilation, and intensive care unit (ICU) care, and less likely to have treatment withheld or to complete advance directives. Providers of Care Near the End of Life The health care institutions most involved in care near the end of life are hospitals, me health agencies, and hospices, as well as nursing homes, long-term acute care facilities, ho outpatient clinical settings. The health professi ons most involved are physicians, nurses, and ice and palliative medicine, the ts trained and certified in hosp social workers. Besides specialis ecialists in treating involved physicians include primary care clinic ians; hospitalists; and sp advanced serious diseases, such as cancer and heart disease. Nursing personnel involved in end- of-life care include advanced pr nurses, practical nurses, and actice nurses, other registered available at all these levels. Social workers, nursing assistants, with specialty certifications chaplains, pharmacists, rehabilitation therapists, h as home health aides), direct care workers (suc family caregivers, and hospice volunteers also part icipate in end-of-life care in large numbers. apter, while other pers Family caregivers are discussed later in this ch onnel are discussed in Chapter 4. The Importance of Primary Care 1 e with advanced serious illnesses Primary care plays a crucial role for many peopl because primary care clinicians often are best positioned to coordinate the patient’s health uity of care across the patient’s life span, and services across multiple specialties, ensure contin understand the capabilities of family members. Primary care clinicians include family physicians, general internists, general pediatrici ans, and geriatricians; primary care nurse 1 health care services by clinicians “the provision of integrated, accessible An IOM report defines primary care as personal health care needs, developing a sustained who are accountable for addressing a large majority of partnership with patients, and practicing in the context of family and community” (IOM, 1996, p. 31). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

62 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-5 practitioners; and some physician as sistants. These clinic ians often treat patie nts who are nearing tment of multiple physical symptoms, as well as the end of life and require identification and trea psychosocial support. In addition to treatment of one or more advanced serious illnesses and their comorbidities, their patients variously may need assistance in advance care planning and health care decision making, counseling, referrals to hospice and specialty palliative care, health agencies, and referrals to other relevant specialists and to social service and home coordination of care. among all providers and between providers Care coordination, including communication and the patient and family, is especially crucia l because care near the end of life can involve many health professionals, multiple chronic co nditions, and rapidly emerging complex problems with medical and social dimensions. Primary car e often is expected to carry out this care coordination function. However, the high use of specialty care by elderl y people with multiple chronic conditions makes coordinati on difficult. This difficulty is illustrated by a cross-sectional study in Washington State of 2,000 Group Health pl an members who had chronic conditions and were eligible to enroll in a Me dicare Advantage Special Needs Pl an. In that study, continuity of primary care was associated with more coordi nated care for patients who were low users of 2 who were high specialty care users specialty care, but not for patients (Liss et al., 2011). As my 88-year-old father-in-law was in decline w ith eight different chronic conditions, he had more steering the ship. Most of all, his pain was poorly specialists than we could keep track of, and nobody was managed, but finding an outpatient palliative care physician was impossible, even in a city like Los Angeles. He resisted hospice mainly because he thought that meant he was giving up, so he continued to suffer and experience recurring runs to the emergency room. When he finally agreed to home hospice, his he lived under hospice he was ally, and during the final month care and condition improved dramatic comfortable, he had heartfelt conversations with all 11 of his children, and he died in peace and dignity eriod of serious, progressive illness before hospice was a in his home. It was a good death, but the p * nightmare, because hospice-type care is kept out of reach until the last moments of life. ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. A literature review of coordination in e nd-of-life cancer care between primary care physicians and oncologists found “preliminary ev idence that the continued involvement of primary care physicians in cancer care is valued by patients, may influe nce care experiences and ,” such as “meeting patients’ needs for outcomes, and serves identifiable functions communication and emotional support” (Han and Rayson, 2010, p. 33). The authors of this ata are particularly lacking on th literature review further noted, “D e nature and outcomes of care nd oncologists (Han and ary care physicians a coordination occurring specifically between prim Rayson, 2010, p. 34). For example, one study using the Surveillance, Epidemiology, and End 3 nced lung cancer patients for 1992-2002 found that adva Results (SEER)-Medicare database l hospitalization had ovider during their fina who were seen by their usual primary care pr 25 percent reduced odds of admission to cr rma et al., 2009). itical care units (Sha 2 In this study, coordination was defined based partly on the coordination measure from the short form of the Ambulatory Care Experiences Survey, continuity of care was based on a formula that involved the number of d the number of visits to each primary care clinician, and primary care clinicians seen by a patient during 1 year an or more specialty care visits in 1 year. high use of specialty care was defined as 10 3 The SEER-Medicare database comprises Medi care beneficiaries diagnosed with cancer. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

63 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-6 DYING IN AMERICA Current trends support the development of “m edical homes,” which are distinguished by seven essential features: a pers onal physician, physician-direct ed medical practice, a whole- person orientation, coordination (or at least integration) of care, quality and safety as hallmarks, enhanced access to care, and appropriate paym ent mechanisms (American Academy of Family Physicians et al., 2007). One of the “joint principles” of medical homes adopted by the American Academy of Family Physicians, American A cademy of Pediatrics, American College of ation describes a whol e-person orientation: Physicians, and American Osteopathic Associ The personal physician is responsible for pr oviding for all the pa tient’s health care needs or taking responsibility for appropria tely arranging care with other qualified professionals. This includes care for all st ages of life: acute care, chronic care, preventive services, and end of life care (American Academy of Family Physicians et al., 2007, p. 1, emphasis added). near the end of life and their families thus Attention to the spectrum of needs of persons of the medical home approach. is highly consistent with the goals re of children. Pediatricians in medical Medical homes are commonly used in the ca “...by proactively coordinating car e; facilitating consistent homes provide end-of-life care ding anticipatory guidance; and helping to communication for better decision-making; provi ing with medical decisi on-making” (Tripathi manage symptoms and social distress; and help et al., 2012, p. 113). These activities ar e seen as consistent with pall iative care, as described later in this chapter, and should be offered from the time of diagnosis onward, according to the American Academy of Pediatrics (AAP, 2013). Strongly related to the primary care needs of many older people with advanced serious illnesses are their needs for geri atric care. Geriatricians routin ely provide care for vulnerable tions (Warshaw et al., 2008). Pr oviding appropriate palliative older adults with complex condi care is a core value of this subs pecialty of both internal medicine and family medicine (Besdine et al., 2005). Many of the needs of older peopl e also can be met by gerontological advanced practice nurses (Hendrix and Wojciechowski, 2005). Addressing the palliative needs of people near the end of life and their families is values of primary care across the life span. consistent with the expertise, approach, and The Problem of Burdensome Transitions Patients often experience multiple transitions near the end of life, and they suffer the consequences of the resultant di scontinuities in care. Medicati on errors, disruptions in care in poorly managed transitions nate care all are implicated planning, and failures to coordi between care settings, incl uding between hospitals and nursing homes or private homes. Following discharge from hospital to home, the lack of a single point of contact and of nurse tling to patients and families (Swan, 2012). involvement in follow-up care can be unset Transitions characterized by these deficits or th ose that are simply difficult for sick, confused patients and their families to manage are considered “burdensome.” Transitions between care settings can be confusing and overwhelming to pa tients, especially seriously ill patients, and their families and can result in preventable readmissions or emergency department visits. Often, not made, follow-up with relevant health care professionals is appropriate follow-up referrals are not sufficiently timely, psychological and social and potentially useful needs are not addressed, PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

64 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-7 THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE personnel such as social workers, pharmacists, health educators, and rehabilitation therapists are not engaged (Feigenbaum et al., 2012; Abrashkin et al., 2012). Preventable hospital readmissions are fre quently a consequence of poorly managed e-for-service beneficiaries discharged from the transitions. As many as one-fifth of Medicare fe hospital to the community in 2003-2004 were read mitted within 30 days, and half of them did s et al., 2009). Between 2000 and 2009, the rate of not see their physician in the interim (Jenck health care transitions—both in th e last 90 days and in the last 3 days of life—among fee-for- service Medicare beneficiaries incr eased (Teno et al., 2013). Among transitions in the last 3 days of life, more than 20 percent we re to an acute care hospital. In what may be the start of a favorable tr end, the Medicare readmission rate did fall slightly in 2012, to 18.4 percent (Gerhardt et al., 2013). This d ecline was perhaps related to recent initiatives aimed at reducing readmissions. For example, Aetna Medicare Advantage ved care under what was called the Transitional members in the mid-Atlantic region who recei rate, compared with a 39 percent rate among Care Model had a 29 percent 3-month readmission r fewer hospital days on average during the 3 matched nonparticipants; they also experienced fa Transitional Care Model entailed assignment of months postdischarge (Naylor et al., 2013). The time of admission to assess needs and develop and implement the a transitional care nurse at the discharge plan. Similarly, an inte rvention designed to encourage patients and family caregivers to play a more active role in care transitions led to lower readmission rates at both 30 and 90 days in a large integrated care delivery syst em in Colorado (Coleman et al., 2006). This intervention included guidance from a “transitions coach,” as well as encouragement and tools to improve communication across settings. Another intervention, in an academic medical center, led to lower hospital utilization within 30 days of discharge by using a “nurse discharge advocate” to conduct patient education, arrang e follow-up appointments, and assist with reconciliation of medications (Jack et al., 2009). More recently, the Centers for Medicare & Organization Program, Community-based Care Medicaid Services’ (CMS) Quality Improvement Reductions Program introduced a penalty that Transitions Program, and Hospital Readmissions onate readmission rate fo reduces payments to hospitals with a disproporti r particular conditions ects of several of these other programs, ich incorporates asp beginning in 2012. This initiative, wh readmission rates (Brock et al., 2013; CMS, has demonstrated success in reducing hospital 2013a, 2014a,b; James, 2013). To reduce readmission rates and improve prim ary care, the Department of Veterans Teams (PACTs) with nurse case managers. In Affairs (VA) has used Patient Aligned Care called Coordinated-Transitional Care (C-TraC) used Madison, Wisconsin, a VA program experienced nurses as case managers to consult with patients by telephone, rather than in home visits (Kind et al., 2012). Thes e nurses followed protocols intende d to educate and empower the ensure medical follow-up, educate the patient patient and caregiver in medication management, ng a worsening medical condition, and ensure that and caregiver to respond to “red flags” indicati rates were 23 percent among C- whom to contact. Readmission the patient and caregiver knew rcent rate is still TraC patients in 2010-2012, compared with 34 percen t at baseline. The 23 pe for 2012 noted above, but this difference may higher than the 18.4 percent national average reflect differences in patient characteristics. nalyses of randomized clinical trials, According to a meta-review of 57 meta-a 4 have been shown to reduce hospital community-based disease management programs 4 time and across settings, for patients with multiple serious Disease management programs coordinate services, over conditions (Ellrodt et al., 1997). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

65 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-8 coronary heart disease, and asthma (Benbassat readmission rates for patients with heart failure, nagement programs for several other types of and Taragin, 2013). On the other hand, disease ma patients and inpatient-based program s generally have been less successful. A systematic review of 21 randomized clinical trials involving trans itions of patients from the hospital to another setting found that 9 of the interventions resulted icant positive effect on in a statistically signif readmission (Naylor et al., 2011); all 9 interventions involved nur ses, and 6 of these involved home visits. Transfers to and from nursing homes are also im portant to end-of-life care in at least two ways. First, as noted in Chapter 1, the percentage of deaths occurring in nursing homes has been it was in the years prio (IOM, Approaching Death r to the publication of greater recently than itals and toward nursing homes and individual 1997). As end-of-life care moves away from hosp the end of life in nonhospital se homes, the quality of care near ttings becomes more important (Flory et al., 2004). Second, many nursing home resi dents with dementia, in particular, face burdensome transitions and may experience inte rventions that cause discomfort and produce little if any gain: The late stages of dementia are charac terized by major challenges to quality of life, including inability to communicate, initiate movement, or walk; difficulty ence; and a high risk eating and swallowing; agitation; incontin of infection and ng for individuals with dementia go beyond pressure ulcers. The sources of sufferi fear, depression, and confusion and in clude significant physical symptoms, including pain, coughing, choking, dyspn ea, agitation, and weakness...Nearly all s with advanced dementia report that family members of nursing home resident comfort is the primary goal for their care . Nonetheless, a minority of Medicare decedents with dementia are referred to hospice before death, and repeated and nursing homes and feeding tube burdensome transitions between hospitals placement commonly occur, despite lack of evidence of quality of life or survival benefit (Unroe and Meier, 2013, p. 1212). In one sense, nursing homes face a dilemma in providing care near the end of life. e, federal and state Although nursing homes typically are a frail elderly person’s final residenc agencies and national accreditation entities hold th em to standards that can be more suitable to t near the end of life. As a sing quality of life and comfor life-prolonging care than to addres eat pain, especially in cognitively impaired result, “evidence indicates that nursing homes undertr and minority residents” (IOM, 2011, p. 141). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

66 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-9 THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE Unwanted Care and Lack of Coordinati on and Continuity: An Illustration Box 2-2 presents a family narrative illustrating several dimensions of care near the end of life that is neither needed nor desired, neither coordinated nor conti nuous. Those dimensions ctives, an excessive number of burdensome include a failure to implement advance dire transitions, repeated miscommunications with the family, inadequate pain management and cation with the patient, and an inordinate apparent overuse of sedation, insensitive communi delay in referral to hospice. Chapter 3 examines in detail the importance of communication about s. Such communication can help patients avoid patients’ values, goals, and informed preference nt with their personal goals and ey receive care that is consiste unwanted care and ensure that th values. BOX 2-2 The Impact of Unwanted, Uncoordinated Treatment: A Family Narrative The subject of this narrative is a New England man who died at age 98, several years clude “heroic” measures at the end of his life. after telling his family and signing directives to ex His daughter recounts his experience: In 2010, he had been suffering from a form of senile dementia progressively for at least 10 years, though his physical health was excellent. The death of his wife, however, in May of that year, caused him greater confusion and anxiety than he had ever experienced... Early in the morning on December 7, 2010 the staff at the assisted living facility, where he lived in Maine, found him on the floor. They phoned an ambulance and he was taken to a nearby hospital, where a left hip fracture was diagnosed... The surgery was “successful” and my father “recovered” post-operatively very well. However, his agitation—presumably prompted by pain, unfamiliar surroundings, lack of comprehension of the circumstances—increased daily... In the four weeks prior to his death, my father lived under the care of five different institutions in two states. Only the last place, the hospice, appeared willing or able to provide care and comfort to a man who was obviously at the end of his life. After he had been in the hospital in Maine for 12 days, a social worker phoned one morning to say an ambulance was on its way to take him to a hospital in Haverhill, Massachusetts, where his medications would be “adjusted”...The transfer was already in progress; we, the family, were merely being notified. When we arrived at the hospital in Maine, distraught at the short notice, we asked to see the doctor who was discharging my father. A psychiatrist, he explained the reasons for my father’s abrupt discharge. According to medical practice, it was well known (from patients who could give a reliable history) that post-op pain is gone after three days. Given the state my father was in—he was groaning in evident agony—I began to suspect that the situation was purposely misunderstood by the professionals in charge of his care. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

67 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-10 DYING IN AMERICA It was clear that there was no good future for my father: I knew his comprehension could not be improved medically; only his physical activity and his mental agitation could be subdued by drugs. Distressed myself, I pleaded with this psychiatrist that all my father needed was “care and comfort,” a phrase my own doctor had assured me was the medically acceptable option. At this, the psychiatrist looked me straight in the eye and said, “I’m sorry, but because of my own personal and religious beliefs, I am not able to discuss that with you.” When we arrived at the Haverhill facility—which we only then discovered was a mental hospital—my father was already admitted to a ward of mostly elderly patients who, we had been told, were being treated for medical as well as psychiatric problems. However, it was there that an aide, trying to help my father to the toilet, recoiled in horror when he saw the staples still holding the incision site together, asking, “How do we get him to the toilet with a broken hip?” A staff social worker...seemed surprised that this new patient had come from Maine, but then remembered that their marketing person had just visited the Maine hospital. My father’s transfer was apparently the first success of their new marketing campaign. She told us that on Monday morning we would be called for a family meeting to consider my father’s care...His distress and confusion steadily increased. By Sunday, he was hostile, even to us (we had never seen that before) and obviously paranoid... Monday morning came, and no one contacted us. I phoned both the social worker and the nurses’ station on the floor, but no one was available to talk to me about my father. Fifteen minutes after my last phone call, my sister received a call from the Haverhill hospital to inform her that they were transferring my father to a nearby regional hospital emergency room. Why? Because he was dehydrated and had an elevated white cell count. When we got to the emergency department and saw my father, he was heavily sedated...We were later told that my father was not dehydrated and that actually his white cell count was only slightly elevated. The Haverhill mental hospital had kept him the three nights required for reimbursement by Medicare and then got rid of him. The staff at the regional hospital were terrific...We agreed to have him admitted to their “Adult Behavior Unit”...Despite his dementia, my father had somehow retained the old-fashioned courtesy and personal decorum of a by-gone era— being addressed by well-meaning young staff members as “Sweetie” added to his bewilderment. He hated being there...A few days after Christmas, when it was evident that my father wasn’t going to improve and neither could he stay there, a thoughtful and efficient social worker suggested a hospice center also in Haverhill. The hospice staff was uniformly kind, supportive, unhurried, and caring; they provided a wonderfully peaceful place to live while dying. He died four days later, and we still regret that he didn’t get there sooner. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

68 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-11 [He] died on January 2, 2011, 65 years to the day that he was discharged from the Army after serving in the Pacific during World War II. SOURCE: Stephens, 2011. Reprinted with permission from WBUR and Sarah Stephens. How frequently does this scenario occur? Th e incident recounted in Box 2-2 took place clearly articulate family advocate; many people despite the active involvement of at least one near the end of life lack this advantage. Other a ccounts of unwanted treatment that fails to accord with patient preferences are reported in gene ralist publications (Kri eger, 2012; Rauch, 2013; Butler, 2013), in comments submitted to the committee online by members of the public, and in subsequent chapters of this report. The IOM Committee on Improving the Quality of Cancer Care recently underscored the importance of patient preferences, saying, “In th cancer, the cancer care e setting of advanced team should provide patients with end-of-life care c onsistent with their needs, values, and rrent conditions appear to fall far short of this goal. The preferences” (IOM, 2013, p. 138). Cu udies, clinicians ask for patient preferences in same IOM report notes that according to recent st medical decisions only about half the time. (See also Chapter 3.) THE PALLIATIVE APPROACH Palliative care can be consid ered an umbrella term that encompasses a spectrum of approaches to delivering care for people with serious advanced illness. Various organizations nitions of palliative car have put forward conceptual or functional defi e, suggesting that it • “seeks to prevent relieve, reduce, or soot he the symptoms of disease or disorder without effecting a cure” (IOM, 1997, p. 31). • “is a broader term that includes hospice care as well as other care that emphasizes symptom control, but does not necessaril y require the presence of an imminently terminal condition or a time-limited prognosis . Palliative care may include a balance tions that varies acr of comfort measures and curative interven oss a wide spectrum” (VA, 2008, p. 2). • is “specialized medical care for people with serious illnesses. It is focused on providing patients with relie f from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family” (CAPC, 2013). their families facing life of patients and • is “an approach that improves the quality of tening illnesses, through the prevention and the problem associated with life-threa entification and impeccable assessment and relief of suffering by means of early id ical, psychological, and spiritual” (WHO, treatment of pain and other problems, phys 2002, p. 84). • “focuses on achieving the best possible quality of life for patients and their family needs and goals and independent of caregivers, based on patient and family palliative care teams assess and treat symptoms, support prognosis. Interdisciplinary to informed patient and family goals, decision-making and help match treatments r family caregivers, identify community mobilize practical aid for patients and thei ing environment, and promote collaborative resources to ensure a safe and secure liv PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

69 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-12 DYING IN AMERICA hospital, home, and and seamless models of care across a range of care settings (i.e., nursing home)” (Meier, 2011, p. 344). • “provides relief from pain and other dist ressing symptoms; affirms life and regards eath; integrates the dying as a normal process; intends neither to hasten or postpone d psychological and spiritual aspects of patient care; offers a support system to help h; offers a support system to help the patients live as actively as possible until deat nd in their own bereavement; uses a team family cope during the patients illness a approach to address the needs of patients and their families, including bereavement counseling, if indicated; will enhance quali ty of life, and may also positively cable early in the course of illness, in influence the course of illness; is appli conjunction with other therapies that are intended to prolong life, such as those investigations needed to better chemotherapy or radiation therapy, and includes 5 understand and manage distressing c linical complications” (WHO, 2013). optimizes quality of “means patient and family-centered care that life by anticipating, • care throughout the continuum of illness preventing, and treating suffering. Palliative involves addressing physical, inte and spiritual needs and to llectual, emotional, social, facilitate patient autonomy, access to information, and choice” (HHS, 2008; Dahlin, 2013). A content analysis of these seven definitions was developed for this report. That analysis ve care, used in constr ucting the definition of revealed four essential attributes of palliati palliative care used in this report: n and other symptoms, supports quality of Palliative care provides relief from pai life, and is focused on patients with seri ous advanced illness and their families. Palliative care may begin early in the course of treatment for a serious illness and may be delivered in a number of ways and across the c ontinuum of health care settings, including the home, assisted living f acilities, nursing homes, long-term acute care facilities, acute care hospitals, and outpatient c linics. It encompasses under the Medicare Hospice Benefit • hospice care, usually including services required (described in more detail in Chapter 5); e literature, “primary”) palliative care, basic (or, as it is sometimes called in th • delivered by health care professionals who are not palliative care specialists, such as primary care clinicians; physicians who ar e disease-oriented specialists (such as and nurses, social workers, pharmacists, chaplains, oncologists and cardiologists); and others who care for this population but ar iative care; and e not certified in pall palliative are care professionals who delivered by health • specialty palliative care, are board certified in this specialty, care specialists, such as physicians who 6 social workers, pharmacists, and palliative care-certified palliative-certified nurses, and chaplains. 5 A separate World Health Organization definition of palliati ve care for children is cited later in this chapter. 6 as programs for advanced certified of seven certification programs, such Palliative nurses are certified in one Board for Certification of nursing assistant (National hospice and palliative nurse and certified hospice and palliative Hospice and Palliative Nurses, 2013). Chapter 4 reviews these programs. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

70 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, 2-13 FAMILY-ORIENTED END-OF-LIFE CARE Specialty palliative care currently is most commonly hospital based and offered as a consultative service, although growth recently has been seen in specialty palliative care services in nursing homes, and in long-term acute care facilities (CAPC, in outpatient settings, at home, of 20 outpatient palliative car e practices revealed that 2011; NHPCO, 2012a, 2013). A survey almost all anticipate substantial growth (Smith et al., 2013a). The delivery of palliative care has been studied in racially and ethnically diverse patients. In a review of care provided to and Hispanic patients at a 1,999 seriously ill African American of African Americans and 70 per cent of Hispanics elected do-not- safety net hospital, 65 percent resuscitate (DNR) orders following palliative care consultation (S acco et al., 2013). On ican patients and 71 percent of Hispanic admission, by comparison, 80 percent of African Amer patients had unknown DNR status, and 20 percent and 29 percent, respectively, had elected no DNR status; 29 percent of all patients were re ferred to hospice. These findings suggest that palliative care consultations can help overcome gaps in information that lead to unwanted, intensive interventions near the end of life. La nguage barriers may also hamper palliative care ons. Elderly people who communica te in Asian languages, for consultations for some populati finding nursing homes wher example, have been found to have difficulty e they can communicate with staff members (Vega, 2014). Growth in Hospice Use ng the palliative care needs of patients with Hospice is an essential approach to addressi r families. In 1995, 17 percent of all U.S. deaths—some 390,000 limited life expectancy and thei 2011, this figure had risen to 45 percent of decedents—were users of hospice (IOM, 1997); by U.S. deaths, or more than a million decedents (NHPCO, 2012a). Hospice emerged as a modern concept in th e United Kingdom in the mid-20th century as Saunders, a physician, nurse, and social worker. a result of the pioneering work of Dame Cicely The approach and concept were popularized in the United States partly through the writing of Elisabeth Kubler-Ross (NHPCO, unda ted). For people with a terminal illness or at high risk of dying in the near future, hospice is a comprehe nsive, socially supportiv e, pain-reducing, and red interventions. It therefore ically elaborate, medically cente comforting alternative to technolog has many features in comm in this report is considered a on with palliative care, and indeed subset of palliative care. Various definitions of hospice exist that reiterate these points: offers three definitions: a discrete site of care; an • The IOM report Approaching Death organization that provides and/ patients in homes or other or arranges for services to settings; and “an approach to care for dyi ng patients based on c linical, social, and metaphysical or spiritual pr inciples” (IOM, 1997, p. 31). The VA defines hospice as “a mode of palliative care, often associated with specific • the care, diagnosed with a known terminal characteristics of the individual receiving , and desiring therapies with a palliative condition with a prognosis less than 6 months intent for the terminal condition” (VA, 2008). • A National Framework and Preferred The National Quality Forum (NQF), in Practices for Palliative and Hospice Care Quality, defines hospice as “a service care for patients who have a limited life delivery system that provides palliative omedical, psychosocial, and spiritual expectancy and require comprehensive bi support as they enter the terminal stage of an illness or condition. It also supports PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

71 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-14 DYING IN AMERICA family members coping with the complex c onsequences of illn ess, disability, and aging as death nears” (NQF, 2006, p. 3). With the understanding that in discussing partic ular studies, the terms employed by their authors are used, this report uses the NQF definition of hospice. hospice programs originally were designed primarily to As noted in Chapter 1, whereas serve people with cancer, hospices now also serv e large numbers of people with heart problems; other conditions, includi ng (especially before Alzheimer’s disease; kidney disease; and improvements in drug treatments) HIV/AIDS. As one clinician told the committee in open testimony, “Hospices are known and trusted in their communities” (Harrold, 2013), and hospice use has attained mainstream status. By 2012 there were 5,500 hospice programs in the United States, reflecting a steady increase since the first such program ope ned in 1974 (NHPCO, 2013). (Note that one commercial or nonprofit entity may operate multiple hospice programs, each at a different site.) , while the rest were ee-standing or independent Nearly three in five of these programs were fr or nursing home. In 2012, more than three-fourths part of a hospital system, home health agency, of the programs admitted fewer than 500 patients, and the (mean) average daily census of the programs was 149 patients. New hospice programs opening in 2008-2009 were more likely to be for-profit than those that began operation in earlier year s. There also is a trend toward larger n a commitment to providing veterans with hospices (Thompson et al., 2012). The VA has show 2007; Daratsos and Howe, 2007). palliative care (Edes et al., high-quality hospice and specialty Hospice and palliative care is part of the VA’s st andard medical benefits package, and palliative care consultation teams are available at al l VA hospitals in the United States. Hospice services are available to many children with serious chronic diseases, as described in Appendix F. That a ppendix points to an increasing share of deaths among seriously ill children occurring at home, but with substantial racial differences (such as a smaller proportion of African American children dying at home) nationally and in some states. Still, adults to hospice. Hosp ices responding to a 2007 children appear to have far less access than survey typically cared for only 1-20 children per year (Friebert, 2009). services and, in fact, are required under Volunteers are an important part of hospice 7 A 2006 study of volunteer hospice conditions of participati on for Medicare and Medicaid. r hours per patient per participation in 305 hospice programs found an average of 0.7 voluntee week (Block et al., 2010). The researchers then matched use of volunteers with an associated survey of 57,000 family members of decedents. Ho spice programs with the greatest use of volunteers had the highest overall ra tings for quality of care. Usi ng volunteers also can increase r example, prison volunteers have helped make access to hospice care in some circumstances. Fo ho are dying, including elderly prisoners serving hospice a viable service for fellow inmates w (Mitchell, 2013; Casavecchia, 2011). long sentences and prisoners with AIDS ndonment of treatment. earlier death and aba People frequently associate hospice use with The reality is very different. Some evidence suggests that on average, hospice patients live longer than similarly ill nonhospice patients. For example, hospice patients outlived nonhospice almost 4,500 Medicare beneficiaries in the late patients by an average of 29 days in a study of udy of 7,879 Medicare beneficiaries who died 1990s and early 2000s (Connor et al., 2007). In a st 1991 and 1999, 26 percent of hospice patients of advanced non-small-cell lung cancer between 7 42 CFR § 418.78 Conditions of Participation: Volunteers. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

72 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-15 ear from diagnosis, and 6.9 percent of hospice and 21 percent of nonhospice patients survived 1 y patients and 5.5 percent of nonhospice patients survived 2 years (Saito et al., 2011). As the discussion of the evidence for the effectiveness of palliative care later in this support needs of patients through chapter further shows, addressi ng the physical, emotional, and a palliative approach may actually extend life e improving the quality of xpectancy, in addition to life and increasing patient and family satisfactio n. Box 2-3, for example, describes a case in which hospice tailored services to meet the n eeds of a seriously ill elderly woman who was contemplating suicide. BOX 2-3 Hospice Responds to a Patient’s Unique Needs In an interview with a hospice and palliative medicine specialist, an introspective 86- year-old woman with progressive congestive heart failure and multiple comorbidities, including sician suggested she consider hospice to depression, was contemplating suicide. The phy feeling like a burden to her family, and help her maximize her quality of life, prevent her from and the family make medical and social decisions concordant with her goals (Kutner, 2010). At the beginning of her ensuing hospice stay, the woman was “upset about hospice in general, specific caregivers, and medical decisions” (Triveldi and Delbanco, 2011, p. 645). But discussions with family members and health prof essionals, including assurances that she could disenroll from hospice, proved reassuring (Kutner, 2010). Members of her health care team later reported: “In the end, she and the hospice caregivers developed a style that suited all ved her discomfort, and facilitated her death at concerned, enabled her to stay in her home, relie home. With hospice’s assistance, she was able to die as she wished—in her home with dignity, control, and comfort” (Triveldi and Delbanco, 2011, p. 645). Death came 22 months after the initial interview with the physician. Growing Support for Palliative Care First hospice and later a broader palliative car e approach arose duri ng the latter part of th the biopsychosocial model of care, prominent century. Palliative care is consistent with the 20 in the mental health field for the past three decades, which views patients in a broader context ps between physical and mental health (Curlin, than their disease state and attends to relationshi percentages of dying patients—and far more 2013; Engel, 1980). In the United States, higher patients with noncancer diagnoses—r re services compared with eceive hospice or palliative ca other countries, such as England, Canada , and Germany (Klinger et al., 2013). Much of the appeal of palliative care flows from its dual emphasis on (1) providing as possible at home or restrictive in the least support that enables patients to remain for as long and least intensive setting of care, and (2) ensuring that patients receive care consistent with their values, goals, and informed preferences, including avoiding the discomfort of unwanted tests and procedures that may not be necessary or beneficial. With palliative care, Patients are able to remain in their homes as a consequence of better family and hospice referrals; more hospital support, care coordination, and home care e service or hospice program instead of admissions go directly to the palliative car patients not benefiting from an ICU a high-cost intensive care unit (ICU) bed; non-beneficial or harmful more supportive settings; and setting are transferred to PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

73 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-16 on, and procedures are avoided (Meier, imaging, laboratory, specialty consultati 2011, p. 350). Over the past two decades, hospital-based pal liative care programs have grown from very small numbers to, by 2011, a presence in 67 percen t of U.S. hospitals with at least 50 beds , 54 percent of public (CAPC, 2013), 85 percent of U.S. hospitals w ith more than 300 beds hospitals, and 26 percent of fo r-profit hospitals (CAPC, 2011). Such programs are especially common in large hospitals and those affiliate d with medical schools (CAPC, 2013). In seven states and the District of Colu had these services in 2011, while mbia, 80 percent of all hospitals six states had such services in fewer than 40 percent of hospitals (CAPC, 2011). In addition, palliative care program almost 70 percent of children’s hospitals had a in 2012 (Feudtner et al., 2013). Access to inpatient pa lliative care varies by geography and type of hospital, with hospitals hospitals, and those that are sole community providers less in the south, for-profit and public likely to offer it (Goldsmith et al., 2008). Several factors have contributed to the rise of palliative care since the release of Approaching Death (IOM, 1997): needs of elderly Americans, increases in the numbers and • caregivers, needs of family recognition of the numbers and • • greater prevalence of chronic diseases, and public attention to controversies and legal ca • ses regarding the right to die and assisted suicide (Meier, 2010). support the use of palliative search and data has emerged to In addition, a growing body of re care, as discussed in the evidence review below. t of consumer groups, influenced by high Successful clinical experiences and the suppor rates of patient and family satisfaction, also have contributed to broader use of palliative care. For example, the cancer advocacy group C-Change strongly supports “increasing the use of palliative care throughout tr eatment” (Santiago, 2013, p. 5). My long-time best friend just died of a slowly progressive brain tumor. Over the five years since his diagnosis, he slowly lost ability to use his left side , his vision, and finally his speech. However, thanks to the diligence of family and hospice, friends, and a fe w respectful caregivers, he sp ent the last few weeks the presence of family, friends, and his most diligent of his life comfortably at home, almost constantly in wife. He spent these days listening to his favorite music, reading poetry, discussing new ideas and old ones, holding hands, and giving hu gs. His final weeks were the most peaceful imaginable! Such a profoundly meaningful exit is indeed rare. erica creates many obstacles to the of life which is pervasive in Am The “medicalization” of the end very old) palliative care movement in this country experience of my friend. The relatively “new” (but * uition soon enough! cannot come to fr _______________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

74 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-17 Other specialty societies and authorities are beginning to recommend integration of ific treatment and care. Beyond the field of cancer, palliative care palliative care into disease-spec is supported by groups advocating improved care in renal disease (Molony, 2013) and neurology (Shaw, 2010). Authorities also recommend integr ating evidence-based specialty medical care and palliative care for patients w ith heart failure (Goodlin, 2009). nts about palliative ndations to counsel patie In general, however, acceptance of recomme care appears to be slow. In a national survey of cardiologists, for example, fewer than half of uss palliative care in the case of two hypothetical elderly respondents said they would disc patients with late-stage heart fa ilure, as recommended by clinical guidelines (Matlock et al., 2010). This departure from cardiol ogy guidelines was especially pronounced in regions with the last 6 months of life. high use of health care services in Illustrative Palliative Care Processes and Palliative Care The MD Anderson Cancer Center’s Supportive Service illustrates atient settings. A palliative care consultant how palliative care can function in hospital and outp meets with patients and families, and together they develop treatment goals and identify lliative care helps ensure a greater problems. Early introduction of pa level of comfort for patients during the entire course of treat ment (Bruera and Hui, 2010). t, using one of several validated assessment The clinical process begins with an assessmen 8 instruments (Hui, 2008). gular palliative To meet palliative care needs throu ghout an illness, re care assessment is then incorporated into patie nt care. Box 2-4 summarizes recent efforts to improve and standardize the assessment process. lp direct relevant care consultants can he Using initial assessment results, palliative assistance, in conformance with patient and fa mily treatment goals. For example, one problem common among cancer patients but difficult to id entify is depression. As appropriate, the that may contribute to depression, rules out palliative care team helps minimize medications comorbidities that may contribute to depres sion, provides or arranges for counseling or eeded (Dev and Sivesind, 2008). psychotherapy, and prescribes anti depressant medications as n iritual and cultural as Other palliative care processes focus on sp pects of care. For example, chaplaincy services, the most visible mode of spiritual services, are described in Chapter 4. The importance of spiritual servic es is underscored by the spiritual distress experienced by many patients near th e end of life (Hui et al., 2011). 8 stem; the Memorial Delirium Assessment Scale; and Examples include the Edmonton Symptom Assessment Sy ligibility for certain cancer atus, which helps determine e instruments used to assess the patient’s performance st therapies and is believed to help predict surviv al, quality of life, and functioning (Hui, 2008). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

75 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-18 DYING IN AMERICA BOX 2-4 Palliative Care Screening in the Hospital Hospital palliative care is most commonly provided by a consultation service based in the hospital. A key question is which inpatients could benefit from a palliative care consultation, and when. The Center to Advance Palliative Care convened a consensus panel to develop checklists for identifying these patients. The panel determined that every hospital, including specialty hospitals, should identify patients at high risk for unmet palliative care needs using a screening process on admission that looks for • a potentially life-limiting or life-threatening condition; and five primary criteria of (a) whether the attending physician would not be surprised if the • patient died within 12 months or before adulthood; (b) frequent hospital admissions; ogical symptoms that are difficult to (c) admissions prompted by physical or psychol control; (d) complex care requirements; and (e) a decline in function, feeding intolerance, or unintended decline in weight; and when possible to identify, also looks for • e, admission from a nursing home or similar secondary criteria, including, for exampl facility, hip fracture, and lack of advance care planning. The panel also proposed a similar but separat e checklist for assessing patients daily during their hospital stay, as appropriate. This checklist looks for • a potentially life-limiting or life-threatening condition; and • five primary criteria of (a) whether the attending physician would not be surprised if the patient died within 12 months or before adulthood; (b) physical or psychological symptoms that are difficult to control; (c) intensive care unit (ICU) stay of 7 or more days; (d) lack of documentation of or clarity about goals of care; (e) disagreements or ff about medical decisions and treatment uncertainty among patient, family, and/or sta preferences; and when possible to identify, also looks for otional distress of the patient or family, secondary criteria, including, for example, em • medical team considering patient as a candidate for feeding tube placement, tracheostomy, ethics consults, or other similar procedures or services. The main components of palliative care assessment include pain and other symptoms, social and spiritual factors, patient’s understanding of the illness and prognosis and treatment options, development of patient-centered goals of care, and discharge planning. SOURCE: Weissman and Meier, 2011. Palliative Care for Children The World Health Organization (WHO) has de veloped a definition of palliative care liative care for children is the active total care specifically for children, which states in part: “Pal involves giving support to the family” (WHO, of the child’s body, mind and spirit, and also 9 lt palliative care based on the stage of child 2013). Palliative care for children differs from adu 9 characteristics of pediatric palliative care, which WHO The WHO definition includes the following additional just life-threatening illnesses: “It begins when illness is states should apply to other pediatric chronic disorders, not PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

76 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, 2-19 FAMILY-ORIENTED END-OF-LIFE CARE development, which affects communication and th e patient’s understanding of illness and death; differences between children’s diseases and cau ses of death and those of adults; greater egivers and decision make rs; and the emotional involvement of family members as direct car parents and siblings (Zhukovsky, 2008). impact of the child’s illness on One important development since the IOM report When Children Die (IOM, 2003) was issued the emergence of several sets of guidelines for pediatric palliative care. These include guidelines of the National Hospice and Pallia tive Care Organization (NHPCO, 2009) and the Children’s Oncology Group and Association of Pediatric Hematology and Oncology Nurses (Ethier et al., 2010), and the National Cancer Institute’s “PDQ” for h ealth professionals on pediatric supportive care, including care at the e nd of life (NCI, 2014). Assessment scales that are age- and developm entally appropriate are used in evaluating pediatric patients. For pain, for example, beha vioral observation scales often are used for children under 4 years of age, while faces, photographic or drawing scales, color-analog scales, body maps, and other tools may be appropriate for children ages 3-7 (Zhukovsky, 2008). Adult visual analog scales and verbal rating scales often are used for children over age 8. Likewise, including the cognitive-behavioral strategies of diverse interventions are used to manage pain, desensitization, art , relaxation, modeling, distraction, imagery, thought stopping, exercise therapy, music therapy, and play therapy. As noted in Appendix F, most pediatric deaths take place in hospitals , and the majority of re units, often with an escalating these deaths occur in critical ca array of procedures, such as ls, in particular, have developed pediatric mechanical ventilation. Since 2005, children’s hospita palliative care teams fo r children with long-term advanced seri ous illness and or a broad array of care approach combines the continuity of care and patient- symptoms. The pediatric palliative centeredness usually associated with primary care with highly specialized clinical services. It complements, rather than replaces, curative and related life-extending specialty services. Since 1997, for example, a palliative care program at Children’s Hospital Boston and care, helped families make difficult treatment Dana-Farber Cancer Institute has coordinated nd suffering, and provided extensive bereavement decisions, focused on easing the child’s pain a study of 515 patients receiving care from six services (Groopman, 2014). A longitudinal cohort hospital-based pediatric palliative care programs found that 70 percen t of the patients survived at least 1 year after receiving thei r first palliative care consul tation (Feudtner et al., 2011). States implementing pediatric palliative care programs through Medicaid include California, Colorado, Florida, New York, No rth Carolina, North Dakota, and Washington (NHPCO, 2012b). Massachusetts has independen tly funded and implemented a pediatric palliative care program (Bona et al., 2011). Excel lus BlueCross BlueShield, serving Upstate New York, developed CompassionNet, a pediatric palliative care progr am in 2001, serving more than a thousand families of children with life-threaten ing illnesses (Excellus BlueCross BlueShield, and support services, ce coverage with social 2011). The program enhances regular health insuran to improve quality of life for many of which are not traditionall y covered by health insurance, tailored to each family’s unique needs. both child and family. Services are carefully diagnosed, and continues regardless of whether or not a ed at the disease. Health child receives treatment direct providers must evaluate and alleviate al distress. Effective palliative care a child’s physical, psychological, and soci requires a broad multidisciplinary approach that includes the family and makes use of available community urces are limited. It can be provided in tertiary care resources; it can be successfully implemented even if reso facilities, in community health centres an d even in children’s homes” (WHO, 2013). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

77 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-20 DYING IN AMERICA Support for family members is an essential part of pediatric palliati ve care, beginning in 16 weeks prematurely often survive, but their the first days of life. Today, babies born even interventions and may result in serious, lifelong survival may require painful and uncomfortable disabilities, which places a signifi cant burden on parents who must make fateful decisions. As a decisions for adults be result, it has been suggested that the same atten tion given to end-of-life given to end-of-life decisions for children (Dworetz, 2013). Finally, although adult and pediatri c palliative care differ in important ways, lessons from such care for children can be applied by polic y makers and clinicians to improve the care provided to adults, as described in Box 2-5. BOX 2-5 Lessons from Pediatric Care emphasis on the importance of the family. Pediatrics has long been associated with an The benefits of this family focus remain applicable as patients grow older. Pediatric patient- and family-centered care reflects six core values: listening to and respecting each child and family; flexibility in policies, procedures, and practices; sharing information with patients and families; providing and ensuring formal and informal support; collaborating with patients and families at all levels of health care; and empowering children and families (Committee on Hospital Care and Institute for Patient- and Family-Centered Care, 2012). In addition, as described in the text, pediatrics assesses a child’s behavioral readiness to determine his or her role in making medical decisions, rather than relying on a vague, subjective opinion. End-of-life pediatric care also includes a strong component of bereavement services and consideration of family survivorship. Moreover, in light of today’s changing population demographics (see Chapter 1), pediatrics offers a perspective on how to deal with new family structures—single parents, smaller families and households, and blended families—and the care needs of people of diverse ethnic, cultural, and racial backgrounds. Palliative Care in Nonhospital Settings Although most palliative care programs are hospita l based, the palliative approach ideally is available as well wherever patients with seri ous advanced illness are, including in long-term ical settings, and at home. A l iterature review focused on four care facilities, in outpatient clin “sentinel articles” found that palliative care ou tside inpatient settings can enhance patient satisfaction; improve symptom control and quality of life; reduce health care utilization; and, in a hen survival (Rabow et al., 2013). population of lung cancer patients, lengt Some nursing homes provide residents with a ccess to palliative care through palliative aff to residents not enrolled in hospice, or care consultants, services provided by hospice st ng in some instances 2008; Meier, 2010). Traini enhanced training of nursing home staff (CAPC, has focused on pain management and quality improvement (Robert Wood Johnson Foundation, 2004). Community-based palliative care programs, other than t hose provided by hospices, also unsystematically, and so at hough these programs are developing are beginning to appear, alt respect to management processes, services, and methods of present lack standardization with me health agencies, too, are services (Kamal et al., 2013). Ho integration with other health abson et al., 2013). Advances in communication beginning to offer palliative care services (L technology, such as remote monitoring systems that can alert off-site health professionals to PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

78 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life FAMILY-ORIENTED END-OF-LIFE CARE THE DELIVERY OF PERSON-CENTERED, 2-21 changes in a patient’s vital si gns or medical status, may spur additional growth in such 10 programs. ® In New Mexico, a Hospital at Home project, conducted by Presbyterian Healthcare Services and inspired by developmental work at The Johns Hopkins University, assisted patients with congestive heart failure, chronic obstructiv e pulmonary disease (COPD), and other serious conditions that put them at risk s (Cryer et al., 2012). Services of repeated hospital admission rangements for medical supplies and equipment, transportation, included diagnostic services, ar daily physician house calls, and home visits from a nurse once or twice a day. The project succeeded in meeting Presbyteria n’s core quality metrics 100 percent of the time for 323 patients and achieved higher patient satisf action ratings than usual care. Other examples appear in Chapter 5. Palliative care does not always have to be provided by specialist clinicians. In fact, to meet the palliative care needs of all people with advanced serious illness who are likely approaching death, palliative care precepts must be integrated across the continuum of care and this population. For example, an article by generally embraced by clinicians who care for oncology palliative care speci tant role of basic, or “primary,” palliative alists describes the impor care as “delivered every day in the oncology office” (Cheng et al., 2013, p. 84). These authors stress the importance of se veral actions by the office-ba sed oncologist: a “repeating scale, a spiritual assessment, r, use of a symptom assessment conversation” on coping with cance and referral to a hospice information visit for pa tients with a prognosis of 3-6 months. Delivery specialist physicians w of basic palliative care by primary care and regular ould help meet a rising demand that exceeds the supply of palliative ca re specialists, simplify demands on patients and families, and reinforce existing rela tionships (Quill and Abernethy, 2013). Interdisciplinary Team Approach ishes palliative care The interdisciplinary team approach that typically distingu of comprehensive plans of care, helps ensure contributes to the development and implementation coordination of care, enhances the anticipation and remediation of problems that arise during ributes to good pain management transitions and crises, facilita tes quality improvement, and cont ues (2012, p. 3), “The high-performing team is (Meier, 2011). According to Mitchell and colleag now widely recognized as an essential tool for constructing a more patie nt-centered, coordinated, and effective health care delivery system,” with the patient and family at the team’s center. in 1997, hospice and palliative medicine has Approaching Death Since the publication of become a defined physician specialty, and palliativ e care also has become a specialty area in the professions of nursing, social wor k, and chaplaincy (as described in more detail in Chapter 4) ation, 2013; APC, 2013; NASW, 2013; National (ABMS, 2013; American Osteopathic Associ . In addition to palliative Board for Certification of Hosp ice and Palliative Nurses, 2013) nurses, social workers, and chaplains, team members may medicine specialists, palliative therapists, occupational nutritionists, physical include, for example, pharmacists, dietitians or thologists, and others such as art or music therapists, psychotherapists, speech-language pa 10 Monitoring technologies in development in 2013 included a sensor mat that is placed under the mattress to monitor videoconferencing “robot” to help physicians conduct real- a patient’s sleep patterns, heart rate, and breathing rate; a time virtual consultations; cloud-based applications to help patients track vital signs and access their plan of care; ughout the home to detect falls and missed medications. and remote monitoring sensors that can be placed thro Several of these products already have been approved by the Food and Drug Administration (InformationWeek, 2013). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

79 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-22 therapists and child life speci alists (Adams et al., 2011; Am erican Occupational Therapy Association, 2011; American Society of Health Sy stem Pharmacists, 2002; Cruz, 2013; Hebert et al., 2011; NASW, 2013, 2014; Pollens, 2004; Puchalsk i et al., 2009; Vitello, 2008). A team with such broad composition is most likely to have the competence and time to meet patients’ needs involving medication management, loss of a ppetite, functional limitations, depression, difficulties in swallowing and communicating, sp iritual guidance, and other problems arising, 11 ng an advanced stage of illness (NQF, 2006). perhaps for the patient’s first time, duri should begin with the initi al patient assessment. For The interdisciplinary approach t, which leads to the involvement of other example, a nurse may perform the initial assessmen professional team members as appropriate. Th e composition of the team depends, to a large extent, on resource availability. In a smaller hospital, in rural settings, and under conditions of a teams may be more rudimentary shortage of specialized personnel, than is the case in large, well- staffed academic medical centers. Identification of which interdisciplinary team members are situation is part of the assessment process. necessary in any particular Evidence for the Effectiveness of Palliative Care e effectiveness of pa As noted, a growing evidence base supports th lliative care for those nearing the end of life. A study of 524 dying patien ts at five VA medical centers and affiliated nursing homes and clinics in 2006-2007 showed that those who received inpa tient palliative care consultations had significantly better outcomes in five of six domains studied: information and communication, access to home care services, emo tional and spiritual support, well-being and A trend toward higher scores dignity, and care around the time of death (Casarett et al., 2008). for the sixth domain, bereavement services, wa s not statistically significant. The VA’s well- established, highly rated Home Based Primary Ca re Program for patients with complex chronic d Edes, 2009). This program has disabling diseases includes pa lliative care services (Beales an comprehensive longitudinal primary care and been in place for four decades, and provides y team in the homes of veterans with serious palliative care delivered by an interdisciplinar chronic disabling conditions. The program is associ ated with a 24 percent lower total cost of VA care per patient per year. d in 2010 found that it can lead to improved A landmark study of palliative care publishe quality of life and greater longe vity when provided concurren tly with disease-focused care (Temel et al., 2010). In this 3-year study, 151 pati ents with metastatic non-small-cell lung cancer diagnosis to either assigned at the time of at Massachusetts General Hospital were randomly palliative care or no palliative care, and all patients also rece ived standard oncology treatment. points higher for the palliative care group on the Quality-of-life scores were an average of 6.5 136-point FACT-L scale. Symptoms of depressi on were nearly 2.5 times more common in the ent versus 16 percent). Moreover, median survival was 30 non-palliative care group (38 perc e care group (11.6 months versus 8.9 months), even though fewer percent longer for the palliativ nd of life (defined in the study as receipt ssive care near the e patients in that group received aggre 11 To give one example of team composition, Kaiser Permanente’s TriCentral Palliative Care program, a model that serves patients at home instead of only in the hospital, has estimated the following full-time equivalent staff complement for a census of 30 palliative care patients: 0.4 physician, 2.2 registered nurses, 1.2 social workers, 1.2 ered nurse, 0.6 clinical nurse specialist supervisor, 0.2 certified home health aides, 0.3 intake and liaison regist chaplain, 0.3 program director, and 1.0 clerk, for a total staff-to-patient ratio of 1:4, plus volunteers. The program and Hillary, 2002, p. 26). In pediatric palliative care, as includes patient care conferences every 1-2 weeks (Brumley noted in Appendix F, staffing patterns are “remarkably diverse.” PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

80 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-23 of chemotherapy within 2 weeks of death, admission to hospice 3 days or less before death, or no admission to hospice care) (33 percent versus 54 pe rcent). The authors conc lude that palliative care, begun early in the course of treatment, led to significant improvements in quality of life and 12 Illustrating this study’s mood and was associated with l onger survival in this population. importance, the American Society of Clinical On cology cited it as a “strong evidence base” in in guidelines of the National al opinion (now also adopted formulating a provisional clinic advising oncologists to offer pal liative care concurrently with Comprehensive Cancer Network) standard specialty care, begi nning at the time of diagnosis (NCCN, 2013; Smith et al., 2012; Simone and Jones, 2013). Other studies tend to confirm that palliative care benefits patients. A systematic review of United Kingdom, Sweden, 23 studies conducted in the United States, the Norway, Italy, Spain, Canada, and Australia found that use of expert home palliative care teams more than doubled the odds of dying at home (Gomes et al., 2013). This review further found that home palliative care reduced the symptom burden for patients, while usual care increased it. nts hospitalized with lif e-limiting diseases in In a randomized controlled trial of 512 patie 2002-2003, palliative care patients, compared Denver, Portland (Oregon), and San Francisco in with “usual care” patients, had ith communication and the care experience greater satisfaction w and fewer critical care unit admissions. No diffe rences in survival or symptom control were found (Gade et al., 2008). with advanced cancer in New Hampshire A randomized controlled trial of 322 patients psychoeducational palliative care intervention and Vermont in 2003-2008 found that a specific led to higher scores on quality of life and mood (Bakitas et al., 2009). No differences were found in symptom intensity, hospital days, critical care unit admissions, or emergency department visits. The intervention (Educate, Nurture, Advise Before Life Ends, or ENABLE) consisted of four weekly education sessions , with monthly follow-up sessions conducted by an advanced practice nurse. A number of studies suggest that specia lty palliative care has the capacity to • improve information and communication, access to home care services, emotional gnity, and care around th and spiritual support, well-being and di e time of death (Casarett et al., 2008); • al (Temel et al., 2010); of life, and increase surviv reduce depression, enhance quality y (Elsayem et al., 2006); and • reduce critical care unit mortalit • italizations, and deaths away from home prevent emergency department visits, hosp (Brumley et al., 2007). 12 A follow-up analysis of this study explored whether th e increased survival rates of the palliative care patients sion alone. The analysts found that “...the data do not resulted from improvements (that is, reductions) in depres support the hypothesis that treatment of depression mediated the observed survival benefit from [early palliative care]” (Pirl et al., 2012, p. 1310). The ngevity is of considerable interest. effect of palliative care on patient lo on life span—and the factors that However, the effects of palliative care may account for those effects—remain unclear. According to Meier (2011, p. 349), “Conjectures accounting for the possibility that palliative care and hospice may prolong life include reduction in depression, which is an independent predictor of mortality in multiple disease types; avoidance of the hazards of hospitalization tions; reduction in symptom and high-risk medical interven main safely at home.” The association caregivers that permits patients to re burden; and improved support for family between palliative care and increased life span is a promising target for further research. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

81 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-24 DYING IN AMERICA The case for greater use of and support for spec ialty palliative care can be made based on clinical, economic, and ethical considerations: “Early provision of sp ecialty palliative care improves quality of life, lowers spending, and he lps clarify treatment pr eferences and goals of care” (Parikh et al., 2013, p. 2350). in hospice overall has been well established With respect to hospice, high quality of care in the literature for three decades. As early as 1984, hospice was associated with greater patient satisfaction when compared with conventional care for patients with serious illness nearing the end of life (Kane et al., 1984). As noted earlier, there is suggestive ev idence that hospice use et al., 2011). Hospice also was may be associated with longer su rvival (Connor et al., 2007; Saito found to improve care for people with the difficu lt diagnosis of dementia in a survey of 538 Massachusetts, Minnesota, and Texas (Teno et bereaved family members in Alabama, Florida, al., 2011). In that study, the family members of patients who received ho spice services “at the right time” reported fewer unmet needs, fewer con cerns about quality of care, higher quality of care, and better quality of dying. In a survey of 292 family members of deceased nursing home residents enrolled in hospice, 64 percent rated the quali ty of care rendered before hospice care began as good or excellent for both physical and emotional symptoms (Baer and Hanson, 2000). For quality of care after hospi ce care began, ratings increased to 93 percent for physical symptoms and 90 percent for emotional symptoms. And in a 10-item family satisfaction survey involving bereaved family members of nearly 1,600 people who died of chronic diseases in 2000, overall satisfaction was found to be better in home hospices than in hospitals, nursing eno et al., 2004) (see Table 2-1). homes, and home health agencies (T Family Satisfaction with Alternative Models TABLE 2-1 for End-of-Life Care by Last Site of Care, 2000 Home Hospital Hospice Nursing Home Health % ) Satisfaction ( % ) Home ( % ) Services ( y Indicator of Famil ( % ) Patient did not receive enough help with pain 19 32 43 18 19 38 26 24 Patient did not receive enough help with shortness of breath 70 35 52 Patient did not receive enough emotional 56 support Physician did not satisfy family desire for 52 31 23 14 contact 18 27 18 27 Family had enough contact with physician but had concerns about physician communication Patient was not always treated with respect 20 32 16 4 36 38 46 21 Family had concerns about own emotional support Family had concerns about having enough 50 32 29 44 information about what to expect while patient was dying Staff did not know enou 20 15 gh about patient’s 8 8 medical history Overall ualit 71 47 42 47 of care was excellent y q SOURCE: Teno et al., 2004. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

82 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-25 THE PURSUIT OF QUALITY IN CARE NEAR THE END OF LIFE Two aspects of the quality of palliative care are especially important for establishing accountability: first, which components of palliati ve care contribute most to better patient care outcomes, and second, which metrics are most usef ul for evaluating the quality of care delivered by individual providers. Current efforts to measure and report on these aspects of care are described below. Opportunities to overcome lim itations of these efforts are then reviewed, ar the end of life. followed by the committee’s proposed core compone nts of quality care ne Approaches to Improving Quality of Care Near the End of Life Care of patients with serious advanced illn ess near the end of lif e is complex. Various interventions have been implemented and evaluated to identify aspects of quality care near the end of life that lead to positive outcomes and patie nt and family satisfaction. A systematic review of 23 studies of interventions to improve contin uity of care, care coordination, or transitions between settings of care for peopl e with serious illness found the be st, yet moderate, evidence for improvement in patient or family satisfaction; evidence generally was weak for other outcomes, ation of health care egiver burden, and utiliz including patient or family quality of life, car ss in improving satisfaction was achieved through resources (Dy et al., 2013). The greatest succe coordinator of care, patient and/or family interventions that combined components of a involvement through health education or another nd/or additional patient form of assistance, a ed care plans and use of a palliative care assessment. Other interventions studied incorporat ponents on outcomes was not possible because of specialist. Quantifying the impact of these com the heterogeneity of the studies included in the review. The reviewer s also found that “many studies were limited by numerous methodological i ssues such as insufficient power for reported outcomes (primarily utilization), measuri ng outcomes not specifically targeted by the intervention, and using measuremen t tools (especially for quality of life outcomes) not specific for populations with advanced disease” (p. 443). essentially the same team, found similar A broader systematic review, conducted by methodological deficiencies in many of the 90 st udies included in the analysis (AHRQ, 2012). Still, the authors found moderate tisfaction with interventions evidence for improvements in sa targeting continuity, coordination, and transitions between care set tings. Those interventions that incorporated patient-centered quality improvement components, such as patient, family, or the strongest evidence of effectiveness. caregiver education and self-management, showed Evidence was moderate for improvements in health care utilization outcomes among interventions that targeted communication and decision making, but specific quality improvement methods were not assessed for these types of interventions. Methodological challenges re lating to individual interv entions (e.g., insufficient reviews of interventions (e.g., l ack of meta-analysis) make it statistical power) and larger-scale on quality of care and quality of life. Still, difficult to quantify the impact of specific components d reviews, which show that moderate evidence information can be gleaned from these studies an improvement interventions on outcomes including exists to support the impact of some quality tients nearing the end of life and their families. satisfaction with care among pa Use of end-of-life care pathways also has been the subject of a systematic review; in this gh-quality research design ng their criteria for hi case, researchers found no clinical trials meeti end-of-life care pathways for quali that evaluated the benefits of ty of care and quality of life PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

83 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-26 at this gap in the literature reflects a clear (Chan and Webster, 2013). The researchers suggest th ys and other guidelines for end-of-life care. need to investigate the effectiveness of pathwa Current Quality Measurement and Reporting Efforts In the mid-2000s, a group building on efforts of the Robert Wood Johnson Foundation’s a consensus process to develop 18 proposed Critical Care End-of-Life Peer Workgroup used care (Mularski et al., 2006). Of these, 14 address measures for assessing the quality of palliative processes of care at the patient level, while 4 addr ess structural aspects of critical care delivery. The proposed set of measures was designed to stimulate further work on measurement and enhancement of the quality of palliative care. NQF (2012) has endorsed 14 evidence-based qu ality measures for palliative and end-of- life care. (NQF calls these items “measures,” but because they are broad categories, they might better be termed “criteria” or “domains.”) The NQF measures are: • pain screening, for hospice and palliative care (NQF #1634); • pain assessment, for hospice a nd palliative care (NQF #1637); • patients treated with an opioid who are given a bowel regimen (NQF #1617); • patients with advanced cancer assessed for pain at out patient visits (NQF #1628); • dyspnea treatment, for hospice and palliative care (NQF #1638); • dyspnea screening, for hospice and palliative care (NQF #1639); • patients admitted to an intensive care un it who have care preferences documented (NQF #1626); • treatment preferences, for hospice and palliative care (NQF #1641); • mentation in the clinical record of a percentage of hospice patients with docu discussion of spiritual/religi ous concerns or documentation that the patient/caregiver did not want to discuss such concerns (NQF #1647); • comfortable dying (NQF #0209); hospitalized patients who die an expected death with an implantable cardioverter • been deactivated (NQF #1625); defibrillator (ICD) that has family evaluation of hospice care (NQF #0208); • • consumer assessments and reports of end of life (NQF #1632); and • bereaved family survey (NQF #1623). In 2013 the National Consensus Project for Qual ity Palliative Care (NCP) released a new set of Clinical Practice Guidelines, rooted, as the name suggests, more in consensus than in evidence for effectiveness (Dahlin, 2013). The NCP is a collaborative effort of the American Academy of Hospice and Palliative Medicine, Cent er to Advance Palliative Care, Hospice and Palliative Nurses Association, National Associat ion of Social Workers, National Hospice and Care Research Center. The Palliative Care Organization ( NHPCO), and National Palliative Clinical Practice Guidelines are divided into eight domains: structure and processes of care; • physical aspects of care; • ric aspects of care; psychological and psychiat • social aspects of care; • PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

84 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-27 spiritual, religious, and exis • tential aspects of care; • cultural aspects of care; the end of life; and care of the patient at • 13 ethical and legal aspects of care. • To illustrate the complexity of these domains, the domain “care of the patient at the end of life” emphasizes multiple preferred practices, including as sessment and management of symptoms; documentation and communication with pati ent, family, and all health care providers about signs and symptoms of the dying process; family guidance; and bereavement support both before and after death, all the while keeping soci al, spiritual, and cultura l concerns in mind. The criteria. The guidelines center on es, with a list of associated same domain includes four guidelin (1) identification, communication, symptoms; (2) care planning; and management of signs and (3) postdeath care; and (4) bere plinary team approach is avement support. An interdisci considered essential. A large set of quality indicators was deve loped through a RAND Co rporation effort (ACOVE) (Wenger et al., 2007). While these called Assessing Care of Vulnerable Elders indicators cover numerous conditi tire continuum of care, from ons and care processes and the en agnosis, treatment, and follow-up, end of life is considered a screening and prevention to di es can be used, researchers particular condition within ACOVE . Illustrating how these measur applied 16 ACOVE indicators for e ment to the care of almost nd-of-life care and pain manage 500 patients who died at the University of Calif ornia, Los Angeles, Medical Center between These indicators, which could be measured April 2005 and April 2006 (Walling et al., 2010). domains: eliciting goals of care, medical records, fit into three using information found in patient pain assessment and management, and dyspnea assessment and management. Of note, these sed measures. The researchers found that domains have content overlap with NQF-endor physician-patient/family communication was “the most striking area in need of quality improvement” (p. 1061). Deficits also were found in assessing breathing difficulties, documenting deactivation of ICDs, and establishi ng bowel regimens for patients taking opioids. dressed goals of care onl y about half the time. The study found further that critical care units ad High scores were obtained for pain assessments , pain treatment, and treatment for breathing difficulties (dyspnea). In conjunction with the effort of CMS to establish quality measures for evaluating hospices, the Carolinas Center for Medical Excelle nce (the Quality Improvement Organization in e PEACE (Prepare, Embrace, Attend, Communicate, North and South Carolina), in conducting th measures in the literature, from governmental agencies Empower) Project, in itially identified 174 nd Quality (AHRQ) and CMS and from previous including the Agency for Health Research a quality measurement efforts by NQF and the RAND Corporation. Of these 174 measures, 88 were submitted to a technical expert panel for re view (Schenck et al., 2010). The panel gave high ratings to 34 measures, falli ng within all eight domains of the NCP’s Clinical Practice Guidelines, but most heavily in the domain of phys ical aspects of care. In a related exercise, 39 13 The NCP domains are generally consistent with the quality domains suggested by the American Geriatrics Society report (IOM, 1997): physical and emotional symptoms; support of Approaching Death and emphasized in the function and autonomy; advance care planning; aggressive care near death—site of death, cardiopulmonary resuscitation (CPR), and hospitalization; patient and family satisfaction; global quality of life; family burden; survival time; provider continuity and skill; and bereavement. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

85 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-28 instruments measuring mainly physical, psychol ogical, or social aspects of palliative care, identified through a literature review, received high psychometri c ratings (Hanson et al., 2010). Specific new quality indicators have been advocated. One opinion, for example, is that quality standards should prohibit placing feeding t ubes in people with advanced dementia, in line with recommendations of leading professional gr oups (Unroe and Meier, 2013; Fischberg et al., 2013). Limitations of Current Quality Me asurement and Reporting Efforts There are important opportunities to improve existing quality measures for care near the bove reflect substantive limitations. Of these 14 end of life. The NQF-endorsed measures listed a items, 4 involve pain, 3 patient pr eferences, 3 bereaved family or close friend perceptions of the , 2012). While NQF’s quality of care, 2 dyspnea, 1 ICD, and 1 “comfortable dying” (NQF Consumer Assessments and Reports of End of Life (CARE) survey assesses decision making using a postdeath survey of the bereaved famil y, there is no NQF-endorsed measure of shared decision making that asks the seriously ill person about his/her perceptions of the quality of care and the quality of shared decision making. Current NQF-endorsed measures also do not adequately measure the experience of caregivi ng, advance care planning, concordance with the timeliness of referral to palliative care patient preferences, burdensome transitions, or a lack of evidence valida ting specific measures services. Presumably, these omissions result from in any of these areas. Patient and family satisfaction has been us ed as a relatively co mmon indicator of the quality of end-of-life care. But the measurement of family satisfaction is subject to methodological inconsistencies—for example, the us e of qualitative versus quantitative methods tions to ascertain satisfaction (Aspinal et al., 2003). Indirect or direct versus indirect ques methods may illuminate specific components of care that affect satisfaction and perceived quality of care. An examination of 117,000 su rveys from 819 hospices in 2005, for instance, excellent if they, as te hospice services as found that family members were more likely to ra the patient’s condition and treatment, if they family members, were regularly informed about care, and if they believed the could identify a single nurse as be ing in charge of the patient’s hospice was providing them with the right am ount of emotional support (Rhodes et al., 2008). Still, the measurement of satisfaction may be infl uenced by factors other than quality per se, such spinal et al., 2003). of expectations (A as sociodemographic factors or fulfilment Efforts to establish criteria for evaluating th e quality of care near the end of life are t of 18 quality measures or criteria was ongoing. As previously mentioned, a preliminary se developed through a consensus process in the mid-2000s (Mularski et al., 2006). However, a ndicators for palliative care led researchers to systematic review of 16 publications on quality i conclude that, while a number of quality indica tors have been identified, few development ve been described in detail, and additional specification of processes for these indicators ha methodological characteristics is needed (Pasma n et al., 2009). An update to that review ations containing 17 sets of qua lity indicators (including 9 new identified an additional 13 public sets and 8 sets also identified in the previ ous review) and again determined that further needed (De Roo et al., 2013). development of indicators is In nursing homes, place of death (in the nur sing home or in the hospital) and hospice easures for end-of-life care, ones that could be enrollment were identified as important quality m such as the Minimum Data Set, Medicare measured using existing administrative data, amel et al., 2012). Both of these measures were enrollment files, and Medicare claims data (Muk PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

86 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-29 ity than high-quality ou tliers. Illustrating how found to be more effective in identifying low-qual these two measures can be used, a study of decedents nationwide between 2003 and 2007 found that within nursing homes, residents with dementia were more likely than other residents to use (Li et al., 2013). Residents of hospice and to avoid transfer to a hospital as the place of death nursing homes with a high prevalence of dementia also were more likely than residents of other nursing homes to use hospice. Measurement of care components agreed upon as constituting quality care may identify e, smaller or independent hospices may be less systematic variation in care quality. For exampl likely than larger or chain-affiliated program s to achieve comprehensive implementation of 14 preferred practices identified by NQF (Carlson et al., 2011). A similar issue arises regarding will die in a critical care unit, in another place of death—namely, the probability that a person setting. On this measure, geography appears to be type of hospital unit, or in a more comfortable a significant factor, at leas t for people with cancer. Nationwide, from 2003 to 2007, about 29 a hospital, but rates ranged from 7 ents with advanced cancer died in percent of Medicare deced percent in Mason City, Iowa, to 47 per cent in Manhattan (Goodman et al., 2010). Coordination of care is a linchpin of high-qua lity end-of-life and palliative care and is particularly difficult to measure. An examinati on of 111 root-cause analysis reports submitted by outpatient departments to the VA’s National Cent er for Patient Safety in 2005-2012 showed that most delays in diagnosis and treatment i nvolved poor communication and coordination among and patients. “Failures in the process of follow-up and tracking health professionals, other staff, of patients were especially prominent, mentione d in more than half of the reports” (Giardina et al., 2013, p. 1371). ed to quality of care, or facilities meeting At times, quality scores turn out to be unrelat standards have widely varying performance on recognized quality measures. For example, the Health Resources and Services Administration and the Center for Medicare and Medicaid Innovation use an assessment developed by th e National Committee for Quality Assurance as patient-centered medical homes. One study (NCQA) to certify community health centers found that while all 30 of the surveyed centers met criteria for becoming an NCQA-recognized patient-centered medical home, no associati on was found between performance on the NCQA e quality of patient ca re (Clarke et al., 2012). assessment that determines this recognition and th end-of-life care, the authors note terest to advocates of improved In what may be of particular in that the NCQA assessment does not include meas ures reflecting the provision of social or “enabling” services, such as assistance in obt aining government benefits, transportation, and fficulty of devising sta community outreach. Experience suggests the great di ndards that take into linical performance, provision of ancillary and account factors as diverse as staff composition, c rts. Overall, any effort to recognize high- supporting services, and quality improvement effo of life faces formidable methodological challenges. quality care near the end Opportunities for Enhancing Measurement and Reporting According to the IOM (2013, p. 301), “Can cer care quality measures provide a ng the quality of cancer care delivered,” and standardized and objective means for assessi 14 initiative to measure office-based practices’ adherence to Similarly, an American Society of Clinical Oncology cancer care guidelines found that showing physicians how well their practice performed failed to lead to measurable improvements in performance. The authors speculate that this failure may relate to small practices’ lack of financial resources to institute formal quality improvement efforts (Blayney et al., 2012). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

87 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-30 DYING IN AMERICA objective measures can serve the same function for end-of -life care. That report’s recommendation on quality measurement (Recommendation 8) entails developing “a national quality reporting program for cancer care as part of a learning health care system” (p. 301). To this end, the report says, “the Department of Health and Human Services should work with professional societies to: Create and implement a formal long-term • strategy for publicly reporting quality measures for cancer care that leverages existing efforts. ent of meaningful quality measures for • Prioritize, fund, and direct the developm cancer care with a focus on outcome measures and with performance targets for use in publicly reporting the performance of institutions, practices, and individual clinicians. ng infrastructure that meets the needs of • Implement a coordinated, transparent reporti integrated into a learning health care all stakeholders, including patients, and is system” (IOM, 2013, p. 301-302). In any setting and at any stage ealth care is “safe, effective, patient- of life, high-quality h centered, timely, efficient, and equitable” (IOM, 2001, p. 40). The third of these characteristics, patient-centeredness, is especially important for patients near th e end of life. Care marked by preset protocols and impersonal treatment can deprive patients of th eir essential dignity, essential for end-of-life care to reflect autonomy, and comfort. The committee believes it is y and unique physical, emotional, intellectual, awareness of the individual’s personal histor cultural, spiritua l/religious, financial, and so cial situation, as well as th e roles of family members and other key individuals in the person’s life. Hi gh-quality patient-centered care at the end of life also should, to the extent possible, reflect patients’ values, goals, and informed preferences (see advancing disease; and support Chapter 3); maintain quality of life under the constraints of family and other caregivers. Health policy makers recently have been fo cusing on identifying high-quality providers as a means of improving the overall quality of h ealth care, and end-of- life care is no exception. Hospices face a financial penalty (a 2 percentage point reduction in the market basket percentage increase for a particular fiscal year) under the Affordable Care Ac t for failure to report on quality 15 (CMS, 2013b; see also Meier, 2011, p. 353). measures endorsed by a “consensus-based entity” Initial implementation of this Hospice Quality Reporting Program (HQRP) by CMS called for hospices to report on only two measures: the NQF #0209 pain measure (“the number of patients who report being uncomfortable because of pain at the initial assessment who report that pain rs”) and a structural measure addressing the was brought to a comfortable level within 48 hou ormance Improvement Plan. Beginning in 2014, organization’s Quality Assessment and Perf be discontinued, and hospices will be required however, these previously used measures will e Hospice Item Set, which collects data on under the HQRP to complete and submit to CMS th seven NQF-endorsed measures: • e given a bowel regimen (NQF #1617), patients treated with opioid who ar • pain screening (NQF #1634), 15 , Public Law 111-148, 111th Cong., 2d Sess. (January 5, Patient Protection and Affordable Care Act of 2010 2010), §3004(c). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

88 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life FAMILY-ORIENTED END-OF-LIFE CARE THE DELIVERY OF PERSON-CENTERED, 2-31 • pain assessment (NQF #1637), • dyspnea treatment (NQF #1638), • dyspnea screening (NQF #1639), • treatment preferences (NQF # 1641), and beliefs/values addressed (if desired by the patient) • (Modified from NQF #1647). Starting in 2015, in addition to the Hospice Item Set quality reporting requirements, CMS will require that hospices, complete the Hospice E xperience of Care Survey, which will gather information from caregivers of deceased hospice patients about patient and family experiences with hospice care (CMS, undated; HHS, 2013). rt on the quality of the care Palliative care programs, by cont rast, are not required to repo they provide, nor are accountable care organizations or large system s. The result is a lack of transparency and accountability. There is no cons ensus on quality measures to use for this purpose or a general approach for determining th e locus of accountability for the quality of end- of-life care—the palliative care program or the physician, the hospital where the program is or other integrated system? based, or the entire hospital A voluntary advanced certifica tion program for palliative ca re programs has been created by the Joint Commission, which accredits hospitals and other providers of care. Advanced ograms that demonstrate exceptional patient and certification is accorded to “hospital inpatient pr lt and pediatric) with fe for patients (both adu family-centered care and optimize the quality of li e whether the program serious illness” (Joint Commission, 2014a). Certif ication criteria includ employs an organized interdisciplinary approach, uses practice guidelines, directs the clinical management of patients and coordinates care, of fers around-the-clock availability of the full udes a measurement-based quality improvement range of palliative care services, and incl are required to collect data on at least component (Joint Commission, 2014b). While programs four performance measures, including two clin ical measures, the Joint Commission does not specify which measures must be implemente d; each program may choose the performance measures that are most important and relevant a nd thus necessitate review and analysis. As of n under this program (Joint Commission, May 2014, 66 programs had received certificatio 16 2014c). In addition, a task force of the American Academy of Hospice and Palliative Medicine and an advisory group of the Hospice and Palliative Nurses Association have begun collaborating to identify a core set of evidence-b ased performance measures that would apply to all hospice and palliative care programs across care settings. This effort, called “Measuring What Matters,” has the aim of developi ng a list of basic, advanced, and “aspirational” measures that measures, as well as other ins and guidelines and the NQF build on the work on the NCP doma cademy of Hospice and Palliative Medicine, previously developed measures (American A a clinical user panel, which panel referred 34 measures to undated-a). A technical advisory narrowed the list down to 12 existing measur es from the PEACE Project, NQF, ACOVE, NHPCO, and National Committee for Quality A ssurance/American Medical Association- Physician Consortium for Performance Improvement (NCQA/PCPI) that fall within six of the ce and Palliative Medici ne, undated-a, b). The eight NCP domains (American Academy of Hospi 16 The first five programs accord d at Regions Hospital, St. Paul, Minnesota; ed certification, in 2012, were those base Sinai Medical Center, New York, New York; St. Joseph Strong Memorial Hospital, Rochester, New York; Mount Hospice, Inc., Branford, Connecticut (HealthPartners, Mercy Oakland, Pontiac, Michigan; and The Connecticut 2012). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

89 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-32 DYING IN AMERICA list will be culled further. The broad applicability of the selected measures and the development of a common denominator, a task that is planned for the next phase of this effort, will allow for benchmarking and comparison across programs a nd settings (American Academy of Hospice and Palliative Medi cine, undated-c). Proposed Core Components of Quality End-of-life Care s, the public, health professionals, health Many stakeholders—patients, caregivers, familie care administrators, payers, and policy makers—would benefit from an authoritative, validated components would apply to care quality end-of-life care. Core list of the core components of near the end of life of every type, provided in every setting. They would include not only hospice and palliative care but also the usual care received by people with advanced serious illness who likely are approaching death, which may be pr ovided by primary care physicians, physician itals, nursing homes, assisted living facilities, specialists, nurses, and other personnel in hosp outpatient clinics, private homes, and other settings. Unfortunately, the evidence base falls short lishment of such a of supporting the estab validated list. Nonetheless, the committee propo ses a list of components, based on existing quality indicators, the existing literature, the committee members’ expert judgment, and their is list, shown in Table 2-2, is advanced to suggest an agenda varied and extensive experience. Th for research and policy development, since each item included should be tested to determine of patients and by the opinions of cal findings across a wide range whether it is supported by clini near the end of life. In addition, the most valid patients, families, and clinicians involved in care re will need to be way to measure each of the proposed components of quality end-of-life ca identified. Key to all 12 of these core components is flexibility and individua l tailoring over time, reflecting patient and family priorities and pref erences. Those involved in a patient’s care must be nimble in responding to individual needs and evolving circumstances. Regular meetings between the care team and the patient and family may facilitate achieving these components of quality end-of-life care as needs evolve over time. the patient’s and family’s Proposed Core Components of Quality End-of-Life Care TABLE 2-2 Rationale Component Frequent assessment of patient’s Interventions and assistance must be based on accurately identified physical, emotional, social, and needs. spiritual well-being All clinicians should be able to identify distress and direct its initial Management of emotional distress and basic management. This is pa rt of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance. People with palliative needs beyond those that can be provided by Offer referral to expert-level palliative ve access to appropriate expert- non-specialist-level clinicians deser care level care. Offer referral to hospice if the patient People who meet the hospice eligibility criteria deserve access to services designed to meet their end-of-life needs. has a prognosis of 6 months or less Management of care and direct Care of people with serious illness may require specialist-level contact with patient and family for nt, and effective physician palliative care physician manageme complex situations by a specialist- management requires direct examination, contact, and PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

90 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-33 THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE communication. level palliative care physician Round-the-clock access to Patients in advanced stages of serious illness often require assistance, such as with activities of daily living, medication coordinated care and services management, wound care, physical comfort, and psychosocial needs. Round-the-clock access to a consistent point of contact that can coordinate care obviates the need to dial 911 and engage emergency medical services. All clinicians should be able to identify and direct the initial and Management of pain and other basic management of pain and other symptoms. This is part of the symptoms definition of palliative care, a basic component of hospice, and clearly of fundamental importance. Even patients who are not emotionally distressed face problems in Counseling of patient and family such areas as loss of functioning, prognosis, coping with diverse symptoms, finances, and family dynamics, and family members experience these problems as well, both directly and indirectly. A focus on the family is part of the definition of palliative care; Family caregiver support family members and caregivers both participate in the patient’s care and require assistance themselves. Person-centered care requires awareness of patients’ perspectives Attention to the patient’s social on their social environment and of their needs for social support, context and social needs including at the time of death. Companionship at the bedside at time of death may be an important part of the psychological, social, and spiritual aspects of end-of-life care for some individuals. Attention to the patient’s spiritual and The final phase of life often has a spiritual and religious component, and research shows that spiritual assistance is religious needs associated with quality of care. Care must be person-centered and fit current circumstances, which Regular personalized revision of the may mean that not all the above components will be important or care plan and access to services based desirable in all cases. on the changing needs of the patient and family NOTE: The proposed core com ponents of quality end-of-life care listed in th is table were developed by the committee. Most of the components relate to one of the domains in th e Clinical Practice Guidelines for Quality Palliative Care set forth by the National Consensus Project for Quality Palliative Care (Dahlin, 2013). THE PROBLEM OF PROGNOSIS ishing the life expectancy of a patient with an advanced The problem of prognosis—establ tion who is likely approaching death—is important for several serious illness or medical condi reasons. A patient’s prognosis • ecting the patient’s state of mind and has important personal implications, aff decisions about how to spend the next several weeks or months and the family’s support for the patient; the patient’s and family’s decisions about has financial implications that may affect • earning and spending; PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

91 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-34 • has family caregiver implications, affecti ng family caregivers’ understanding of what will be expected of them and for how long; • has clinical implications, affecting decisi ons about treatment of the illness and of comorbid conditions, and referrals to hospice and social services; may have legal implications, affecting the entation of advance • preparation and implem 17 ; and directives • affects eligibility for hospice care under the Medicare Hospice Benefit (see Box 2-6). BOX 2-6 Prognosis and the Medicare Hospice Benefit Under the Medicare Hospice Benefit, the patient’s prognosis may have negative one of the eligibility requirements for the practical consequences. As discussed in Chapter 5, Medicare Hospice Benefit is an expected prognosis of 6 months or less if the disease runs the cal director of a home hospice, for example, expected course. According to the former medi when a patient’s pulmonologist determined that her chronic obstructive pulmonary disease (COPD) prognosis was more than 6 months, the pulmonologist effectively discharged her from hospice against her will. She thereby lost access to regular nursing care and other supportive services and died less than 2 months later. The writer offers the opinion that patients’ eligibility for hospice should be based on “their demonstrated need for supportive care services—in other words, based on the weight of their symptoms, their level of functional impairment, or the burden their illness imposes on caregivers” (Groninger, 2012, p. 455). Prognostic Uncertainties lid-tumor metastatic cancers, r certain diseases, such as so Predicting prognosis is easier fo than for many other common and serious conditi ons, such as stroke, heart failure, COPD, end- stage renal disease, frailty, dementia, and Parkin son’s disease. Among elde rly people especially, assessing the overall prognosis may be difficult b ecause these patients fre quently suffer from two urse and prognosis of or more such conditions. Predicting the time co disabling genetic or congenital disorders that affect ch ildren is similarly problematic. months of life, the Although most people have high levels of disabi lity by the last few difficult to predict, even when people with the trajectory of disability, like life expectancy, is same medical condition are compared. Variation in disability trajectorie s “poses challenges for the proper allocation of resources to care for older persons at the end of life” (Gill et al., 2010, ng level of disability, combined with frailty and accumulating p. 1180). Nevertheless, an increasi symptoms, may be the most useful signal of the need for palliative care assessment and subsequent provision of palliative services. Predictive Models Expected longevity is ty pically the major focus of prognosis. An appendix to (IOM, 1997, Appendix D) describes efforts to develop clinical forecasting Approaching Death models, especially for acute myocardial infarcti ive care, and critical on, coma, pediatric intens 17 For example, the New Jersey Supreme Court’s holding that prognosis, broadly defined, affects the legality of In ith patients’ determined preferences: decisions to withhold or withdraw lif e-sustaining treatment in accordance w Matter of , 108 N.J. 335, 529 A2d 434 (1987); and Matter of Jobes , 70 N.J. 10, 355 A2d 647 (1976); re Quinlan Peter by Johanning , 108 N.J. 365, 529 A2d 419 (1987). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

92 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life FAMILY-ORIENTED END-OF-LIFE CARE THE DELIVERY OF PERSON-CENTERED, 2-35 care. The discussion emphasizes several limitations of such models, some of which are technical: statistical limitations, inherent imperfections, an d inadequate accounting for disease specificity and the effects of interventions . However, other limitations may be inherent in the predictive process: death is not the only out come of interest; critical i llness is a dynamic process; the models’ complexity impedes their usefulness; and the perspective of the model differs from the perspective of the patient or family. Since the release of that report, new forecasting models have emerged. Table 2-3 lists reveals, there is littl components of these models, and as this table e overlap. (A forecasting model for pediatric mortality is mentioned in Appendix F.) st accurate of 13 models for predicting life A systematic review determined that the mo expectancy in patients with advanced, incurable ca ncer is the Palliative Prognostic (PaP) score, along with a PaP variant that includes dementia (D-PaP) (Krishnan et al., 2013). PaP scores estimate survival at 1 month, and the PaP model ha s been externally vali dated (Pirovano et al., 1999; Maltoni et al., 1999). The authors of the systematic review note the need for further research to establish reliable prognoses across a broader spectrum of time and to determine the effect of the use of prognostic tools on the quality of end-of-life care. With regard to non-disease-specific models, a systematic review of 16 indices predicting mortality risk in people over age 60 in communit y, hospital, or nursing home settings “identified s found that “there is insufficient several high-quality pro gnostic indices.” However, the author evidence at this time to recommend the widespread in clinical practice” use of prognostic indices (Yourman et al., 2012, p. 190). According to the au thors, limitations of the models include potential bias and failure to predict either very mortality—precisely the low or very high risk of information most likely to be useful to clin icians. The conclusion that these limitations may impede a clinician’s ability to apply prognostic models in a clini cal setting appears to bear out the skepticism expressed in Approaching Death (IOM, 1997, Appendix D). The following are examples of the many studies presenting prognostic models: • A British prospective cohort study based at multiple palliativ e care centers—the Prognosis in Palliative Care Study (P IPS)—produced a composite model for predicting survival of cancer patients at 2 weeks and 2 months (Gwilliam et al., 2011). This model has not been external ly validated (Krishnan et al., 2013). • likelihood of dying within iteria for determining the Another study identified cr 1 year. According to the study authors, thes e “CARING” criteria can be used at the time of hospital admission to determine whethe r the patient is ready for palliative care (Fischer et al., 2006). This model has b een validated (Youngwerth et al., 2013). tirement Study data for people over age Still another study used 1998 Health and Re • of mortality within 50 living in the community to identify 12 i ndependent predictors systematic review of non-disease-specific 4 years (Lee et al., 2006). According to the well calibrated and showed very good indices cited above, this model “was ally validated (Yourman et al., 2012, p. discrimination,” although it was not extern on that is near the vance to the populati 186). While this model shows promise, its rele ven that it is currently validated only for end of life has not yet been demonstrated gi mortality within 4 years. osis are two tools n (APACHE) and eProgn Acute physiology and chronic health evaluatio is a scoring system that uses is in clinical settings. APACHE that can be used to assess prognos PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

93 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-36 DYING IN AMERICA tly after a patient’s admission to the intensive predictor variables and measures collected shor disease and likelihood of in-hos pital mortality (Knaus et al., care unit to determine severity of 1985, 1991; Wong and Knaus, 1991). ePrognosis is a website and software application that provide clinicians with information about patients’ possible aggregates prognostic indices to r variables (such as mortality outcomes based on answers to questions about certain predicto those listed in Table 2-3) (ePrognosis, 2014). in Five Illustrative Prognostic Models TABLE 2-3 Factors Used to Predict Mortality PaP Chen Factors PIPS* CARING HRS g X X Cancer or metastatic disease (any site) X Malignant effusion X X Liver metastases Lung disease X X Heart failure Diabetes X Anorexia or loss of weigh t XX X Dyspnea X X Age (with more points for each older age category; applies to adults only) Sex X X General health status X Mental test score X X X Performance status X Critical care unit admission with multiorgan failure Hospital admissions (two or more) X X Nursing home residence X Applicability of two or more noncancer hospice guidelines Current tobacco use X Body mass index X X Pulse rate White blood coun t XX Platelet coun t X X Lymphocyte count or lymphopenia Hypercalcemia X C-reactive protein X Urea X Bathing X Walking several blocks X Pushing/pulling large objects X Managing money X Ph y sician’s survival p rediction ( in weeks ) X 2, Residence in a nursing home, Intensive care unit admi t with ≥ NOTES: CARING = Cancer, Admissions multiorgan failure, ≥ 2 Noncancer hospice Guidelines; HRS = Health and Retirement Study; PaP = Palliative Prognostic; PIPS = Prognosis in Palliative Care Study. *These factors were found in the PIPS study to predic t survival at both 2 weeks and 2 months. Factors found to predict survival at 2 weeks only were dy spnea, dysphagia, bone metastases, and alanine g breast cancer, male y rimar p were y redict survival at 2 months onl enital p transaminase. Factors found to PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

94 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life FAMILY-ORIENTED END-OF-LIFE CARE THE DELIVERY OF PERSON-CENTERED, 2-37 cancer, tiredness, loss of wei g ht, l y m p hoc y te count, neutro p hil count, alkaline p hos p hatase, and albumin. SOURCES: PIPS: Gwilliam et al., 2011; PaP: Pirovano et al., 1999; CARING: Fischer et al., 2006; HRS: : Chen et al., 2013. g g Lee et al., 2006; Chen There are also informal methods for devel oping prognoses, with less proven reliability. A group of palliative care specialists in oncology, for ex ample, concluded that “it is relatively easy to predict which patients have less than six months to live” (C heng et al., 2013, p. 85). According 3) “should all trigger discussion Cheng” factors shown in Table 2- to these authors, four factors (“ about hospice” (p. 85). Another informal tool that has been used to identify patients for whom palliative care e” question: “Would I be surprise may be appropriate is the “surpris d if this patient died in the next 12 months?” (Moss et al., 2008, 2010). While not perfect, the “surprise” question can be essionals as a way to identify patients with a applied simply and effectively by health care prof poor prognosis. re will always be some uncertainty in It should be cautioned, however, that “the prognosis” (Smith et al., 2013c, p. 2448). For example, if a physician knows a patient belongs to of dying within 6 months, the physician still does not know a group with a 25 percent risk whether this particular patient is in the 25 pe rcent subset or the 75 percent subset. Smith and honest with patients about the boundaries of colleagues (2013c) recommend that physicians be predictive knowledge, addr ess patients’ and families’ emotions about uncertainty, and help them live in the present despite an uncer tain prognosis (see also Chapter 3). FAMILY CAREGIVERS Family caregivers (with family defined broadly; see the guiding principles in Box 1-3 in Chapter 1) provide many types of assistance to people with a chronic disease or disabling condition. An estimated 66 million Americans, or 29 percent of th e adult population, are caregivers; nearly two-thirds are women (National Alliance for Caregiving, 2009). They provide an average of 20 hours of services per week and are heavily involve d in assisting with number and responsibilities of living. Information about the instrumental activities of daily for the population nearing the end of life. This family caregivers is not available specifically report uses the term “family caregivers” to descri be people in this role; other terms used include “informal caregivers,” “carers,” “primary caregiv ers,” and “volunteer care givers.” Whatever the provide incalculable value, and term, these individuals often e xhibit extraordinary commitment, face significant burdens in carrying out the caregiver role. While many family members readily assume this responsibility—and may not consider it a “burden” at all—it takes a larg ely unrecognized toll. The toll in creases when family caregivers must administer medications (including opioid pa in relievers); maintain complex equipment; and s), bathing, toileting, y preparing special diet perform the physical labor of feeding (and possibl member (National Alliance rning, and transporting a family changing and cleaning, dressing, tu al., 2012). Caregiving takes a psyc for Caregiving, 2009; Reinhard et hological toll when family members worry about performing all those tasks safely and well, when caregiving keeps them her family members, when their loved one is frightened or in from meeting responsibilities to ot pain, when they receive little training or gui dance, and when they do not receive help in When the patient is a child, onal Alliance for Caregiving, 2009). managing their own fears (Nati the family caregiver role is ma youth and inexperience of the de more difficult by the relative PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

95 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 2-38 parents, the frequent need to travel long distances to obtain subspecialty pediatric care, deep strains on the parents’ relationshi p with each other, and the vuln erability of siblings to profound emotional stress (Sourkes, 2013). I belong to a caregivers group which is supportive. People who are not caregivers don’t understand the continuous burden of the role and seem to think it c an be walked away from or put aside forever or for a ing my breath. That combined with dealing with while. Not so. The stress feels as if I’m constantly hold insurance communities is just t oo much...Transportation is also a financial concerns, the medical and barrier; just getting the sick person to appointments is physically demanding, and visiting in the hospital is wearying. Parking is a big expense. Pushing a wheelchair is physically demanding. * _______________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. ncial toll when families face high out-of-pocket costs for Caregiving also takes a fina decreases because family caregivers must reduce services and equipment or when family income jobs altogether (Evercare and National Alliance for Caregiving, their work hours or leave their 2007; Feinberg et al., 2011; National Allianc e for Caregiving, 2009). Employer support may therefore be crucial for employed family caregiv ers. Aware of caregiver absenteeism and lost ibility in working hours productivity, some employers offer greater flex and location or other special assistance (Coalition to Transform Advanced Care, 2013). It took all of our savings to keep my husband at home. And it took five of us to give him the round-the- clock care he needed. * _______________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. eir last weeks and days in Given an explicit choice, most people would prefer to spend th their own home, free of pain, control—not in emergency clean and comfortable, and in departments, hospitals, and critical care units away from family and familiar surroundings (see new models of home and community health care Chapter 3). As discussed earlier in this chapter, delivery and improved communi cation technologies are maki ng that choice increasingly possible; however, adequate support for fa mily caregivers remains an unmet need. In previous generations, caregiving was a widely expected role of women in families, and fly, as people died at younger ages or sooner caregiving responsibilities often lasted only brie after the onset of a serious illness. Today’s families are smaller, and many women work outside needed for lengthy periods, but it is also the home. Moreover, not only may caregiving be becoming more complex, requiring management of medical equipment and medication regimens, care, use of community resour ces, and so on—for the most wound care, nutrition, mental health nhard et al., 2012). Some key information about part with no formal training (Feinberg, 2013; Rei family caregivers appears in Table 2-4. worsening dementia. The fragmentation of care is We share the care of my mother-in-law with Home support is almost non-existent, and we challenging, even for professional healthcare providers. * eeds exceed what we can provide in our homes. tremble regarding the limited options when/if her n _______________ PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

96 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, 2-39 FAMILY-ORIENTED END-OF-LIFE CARE *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. TABLE 2-4 Some Key Facts about U.S. Family Caregivers Subject Figure Descriptor Supply of family 4:1 Projected ratio of potential caregivers (aged 45-64) to people potentially in need (over 80) in 2030 (Redfoot et al., 2013) caregivers 78% Of caregivers that perform medical/nursing tasks, the proportion Medication management regularly administering drugs (ave rage 5-9 medications per day) (Reinhard et al., 2012) No home visits 69% Proportion of caregivers not assisted with home visits by a health (Reinhard et al., 2012) professional Proportion of caregivers employed at some time while caregiving 73 % Caregivers who are employed (National Alliance for Caregiving, 2009) Proportion of employed workers serving as caregivers who care for a 72% Caregiving for parents parent or parent-in-law (Mendes, 2011) Proportion of employed workers serving as caregivers who care for 67% Caregiving for someone over age 75 (Mendes, 2011) elderly people 55% Duration of Proportion of employed workers serving as caregivers who have been (Mendes, 2011) doing so for 3 years or longer caregiving 6.6 days Worker Employed family caregivers’ average annual number of days of employed work lost as a result of caregiving (Witters, 2011) absenteeism Lost productivity $25.2 Annual cost of lost productivity due to absenteeism caused by family billion caregiving (Witters, 2011) Value of family caregiving services in 2009 (Feinberg et al., 2011) Economic impact $450 billion Meanwhile, the demand for family caregiving is growing with the rising prevalence of long-term care trends th chronic diseases (Feinberg, 2013), as well as the at encourage more care at home and fewer nursing home placements (see Chapter 5). And the ratio of potential caregivers (people aged 45 to 64) to people 80 and older is expected to fall from 7:1 in 2010 to 4:1 by 2030 (Redfoot et al., 2013). ideal position to foster patient-centered care, In theory, family caregivers should be in an ing to identify care goals, and e patient’s health status, help starting with an understanding of th of care (Gillick, 2013). Bu t such participation participating in the development of the plan nds to provide such lthough palliative care te requires support from the health care team. A perform the caregiving often feel unprepared to support, even families involved in palliative care 1; Payne et al., 1999). And patients and families role (Abernethy et al., 2008; Kilbourn et al., 201 any systematic caregiver support. not receiving palliative care may lack PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

97 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-40 DYING IN AMERICA Personal attributes that help in the caregive r role include adaptability and resilience, and caregivers benefit from the constructive involvem ent of other family members. But they are at risk of loss of control, loss of identity, and loss of relationshi ps, as well as exhaustion and eventual bereavement (Sourkes, 2013). In addition, Caregivers are at increased risk of disease because of the burden and difficulties t sleep or eat right. They neglect associated with caregiving. A lot don’ depression and anxiety, coronary types of themselves, so they’re at higher risk of problems and are more prone to getting sick (Vuong, 2013, quoting Dr. Linda Ercoli, Assistant Professor of Psychiatry, University of California Los Angeles). from six countries (the United States, Results of a systematic review of 19 studies Canada, the United Kingdom, Norway, Israel, an d Saudi Arabia) were inconclusive as to whether gender, age, and relationship to the patient affect caregiver stress. In 8 of the studies, however, stress was found to increase as the patient ’s condition worsened and death approached (Williams and McCorkle, 2011). Family caregivers receive services as well as provide them. Those services may include care of the patient) and be reavement services—counseling, respite care (temporary custodial ter a death—which are a r as long as a year af assistance with arrangements, and other supports fo re. Both respite and bereavement services are covered under component of quality palliative ca the Medicare Hospice Benefit (CMS, 2012). lped call attention other groups have he AARP, the National Alliance for Caregiving, and to the extent of and challenges entailed in family caregiving. However, research on family performance, interaction with caregivers’ roles, needs, beha vior, health risks, success in professional members of the health care team, and use of respite care and other support services caregiving remains sparse, perhaps reflecting its is not highly developed. Research on family lth care professionals. services offered by hea lack of visibility as compared with the Family caregivers have received some pr otections from the federal government. The up to 12 weeks of job-protected unpaid leave Family and Medical Leave Act of 1993 guarantees her family members (DOL, for attending to the care needs of a spouse, chil d, or parent, but not ot 2013). The National Family Caregiver Support Pr ogram, established by the Older Americans Act, as amended in 2000, has helped increase aw areness of the importance of family caregivers by establishing the caregiver as ily counseling, support groups, a client and providing fam training, and respite care (Fei nberg, 2013; AoA, 2012). The Affordable Care Act includes em by promoting models of care that prevent or multiple references to caregivers and may help th facilitate transitions between care settings (Feinberg, 2013). Medicaid’s Cash & Counseling ficiaries to pay family members modest sums program, available in about 15 states, permits bene onal Resource Center for Participant-Directed for home care services in some cases (Nati ously injured veterans (who served after Services, 2013). And family caregivers of seri hensive training, medical services, and other September 11, 2001) may receive a stipend, compre Assistance to Family Caregivers (VA, 2013). services under the VA Program of Comprehensive workforce needs for an aging America took An IOM committee investigating health care note of the importance of integrating family careg ivers into health care teams and providing them at committee reads: “Public, private, and with better training. One recommendation of th training opportunities nd ensure that adequate community organizations should provide funding a are available in the community for informal caregivers” (IOM, 2008, p. 255). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

98 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life FAMILY-ORIENTED END-OF-LIFE CARE 2-41 THE DELIVERY OF PERSON-CENTERED, RESEARCH NEEDS nd-of-life care (NINR, 2013) undertaken since A comprehensive review of studies on e Approaching Death (IOM, 1997) identif ies a shortage of research on the the publication of ics of populations experiencing se rious advanced illnesses or changing demographic characterist ecially kidney and liver conditions and HIV/AIDS. According multiple chronic conditions, esp the NINR report, “Issues related to economics, et hics, and access must be integrated into new research paradigms[,] and attention to culture, ethnicity, and minorities must be made to produce a measurable shift in the focus of research grants, the sources of funding dollars, and the dissemination of meaningful results to inform and educate the public” (NINR, 2013, pp. xi-xii). The report suggests that public-private partnershi ps could help fill these research gaps and improve the delivery of hospice and palliative care. This chapter has identified numerous important areas for further re search, including • the prevalence and nature of care that is ne ither beneficial nor wanted, and practical ways to avoid it; • the effect of palliative care on longevity; • the elements of palliative care likely to offe r the greatest improvements in quality of life; -life care, beyond those identified to date evidence-based measures of quality end-of • of the proposed core compone by NQF and including aspects nts listed in Table 2-2; family caregivers’ roles, needs, behavior , health risks, success in performance, • and use of respite care and interaction with other member s of the health care team, other support services; • reliable approaches to prognosis that st art earlier in the disease trajectory, and assessment of whether more accurate prognoses lead to improvements in quality of life and other outcomes of care; and • c types of clinical innovations in delivering end-of-life the effects and value of specifi care. Pediatric-related research needs may be especially pressing. A ppendix F suggests the need for research in the following areas for children near the end of life: • comparative effectiveness studies of differe nt approaches to symptom management and bereavement support; • analyses of care received in emergency de partments, outpatient settings, and hospices and through home health agencies; lliative care on outcomes and on the patient • cohort studies examining the effect of pa experience; and • finance hospital-based pediatric palliative studies of how best to staff, manage, and and community-based pediatric hospice services. lliative care is identified in a review of the A general lack of investment in research on pa er, 2011). That review suggests ced earlier in this chapter (Mei palliative care landscape referen make important contributions in ealth (NIH), in particular, can that the National Institutes of H PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

99 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-42 DYING IN AMERICA e projects than it did in this field. In 2006-2010, NIH funded 240 percent more palliative car 2001-2005, but palliative care still a ccounted for only a fraction of 1 percent of all NIH grants (Gelfman et al., 2010). Given that palliative care is inherently pa tient-centered, the Patient-Centered Outcomes Research Institute (PCORI) may be a potential funding source for research in this field going search “is intended to forward. PCORI was established under the Affordable Care Act, and its re ention, treatment, and care options available, and give patients a better understanding of the prev 18 the science that supports those options” (PCORI, 2014). In developing its research priorities, PCORI reviewed previous comparative effectiv eness prioritization e fforts and found 10 common ffectiveness research; palliative care was one of these areas priority areas for comparative e (PCORI, 2012). While its own natio nal priorities and research agenda do not specifically call for research on palliative care, many of the topics highlighted are relevant to this field, including prognostication, shared decision making, health care teams, and differences in patient preferences. of research on topics relate d to end-of-life care, there Besides concerns about the quantity of such research. One concern quality are concerns about the is that an emphasis on developing quantifiable results through such traditional met hods as randomized controlled trials tends to omit key questions, such as why a treatment was effective, how pa tients viewed their experience, and what mechanisms caused the outcomes obser ved (Fleurence et al., 2013; Steinhauser and 19 Barroso, 2009; see also IOM, 2009, p. 31). Efforts to broaden the types of investigations used in comparative effectiveness research and invol ve consumers in the design and execution of studies may help address this co ncern (Fleurence et al., 2013). One potentially rich area of research invol ves linking major academic medical centers to s experienced by large numbers of patients to community-based settings, using treatment result show which treatments work best for whom, and then disseminating that information back to clinicians and patients in useful ways (Westf all et al., 2007). This approach, typical of a “learning health care system,” would transform the nation’s clini cal trials enterprise (IOM, 2012, in the recent IOM report on cancer care (IOM, especially p. 15, Table 2-1) and is endorsed 2013). Practice-based research networks (PBRNs) are one practical way to conduct “practice- relevant” research in community -based settings. For example, PBRNs that are supported by vant to community-based health care (AHRQ, AHRQ, link primary care practices in research rele 2013). Each PBRN includes at leas t five primary care practices; most of the research conducted rserved, low-income, and minority populations by the current 131 networks has focused on unde of research networks (Peterson et al., 2012). PBRNs are even collaborati ng to create consortia (Calmbach et al., 2012; Peterson et al., 2012). Significant resources to facilitate the conduct of high-quality palliative care and end-of- (IOM, 1997) was published. The National Approaching Death life research have emerged since Palliative Care Research Center, acting in part nership with the Center to Advance Palliative 18 , Public Law 111-148, 111th Cong., 2d Sess. (January 5, Patient Protection and Affordable Care Act of 2010 2010), §6301. 19 Randomized controlled trials also may exclude patients with multiple chronic conditions or chronic conditions clusion can leave out many people nearing the end of life. combined with disabilities (Fleurence et al., 2013). This ex ted factors, including the role of family caregivers. In general, moreover, Trials also typically ignore family-rela effectiveness in lled conditions, not its an intervention under carefully contro clinical trials assess only the efficacy of the real world. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

100 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-43 THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE Care, provides a mechanism for establishing resear ch priorities, preparing a new generation of and supporting studies aimed at improving care (NPCRC, 2013). researchers, and coordinating , established in 2010, offers a mechanism for The Palliative Care Research Cooperative Group ttings and facilitating timely connecting researchers and clinic ians across varied clinical se completion of complex studies, including randomi zed controlled trials, by pooling resources and expertise across sites (Abernethy et al., 2010). , AND RECOMMENDATION FINDINGS, CONCLUSIONS Findings the delivery of person-centered, family- This study yielded the following findings on oriented end-of-life care. Burdensome Transitions People nearing the end of life often experience multiple transitions between health care settings, including high rates of apparently prev entable hospitalizations. These transitions can nd create burdens for patients a nd families (Coleman et al., 2006; fragment the delivery of care a et al., 2013; Teno et al., 2013). Jencks et al., 2009; Naylor Growth of Hospice The role of hospice in end-of ng in the last two decades. -life care has been increasi of all U.S. deaths in 1995 to 45 percent in 2011 Hospice grew from being the locus of 17 percent (IOM, 1997, p. 40; NHPCO, 2012a). Growth of Specialty Palliative Care (IOM, 1997) was published also have seen the Approaching Death The years since emergence and growth of specialty palliative ca re. By 2011, fully 85 percent of all hospitals with 300 or more beds reported having palliative care services (CAPC, 2011, 2013; see also Chapter 4 tified hospice and pall for information about the number of board-cer iative physicians and certified nurses). Provision of Palliative Care ssional associations encourage oncologists, The guidelines and expert advice of profe ists to counsel patients about palliative care. cardiologists, and other disease-oriented special of timely referral to palliative care appears to Nevertheless, widespread adoption of the practice knowledge of palliative proving the basic level of be slow, despite support for integrating and im serious advanced illn ess (Cheng et al., 2013; care among all clinicians who treat patients with 2010; Molony, 2013; Quill and Abernethy, 2013; Goodlin, 2009; IOM, 2013; Matlock et al., Shaw, 2010; Smith et al., 2012). Interdisciplinary Teams for Palliative Care Besides physician specialists in hospice and palliative medicine, members of palliative care interdisciplinary teams often include specia lty advanced practice nurses and registered PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

101 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-44 DYING IN AMERICA nurses, social workers, chaplains, pharmacists, rehabilitation therapists, direct care workers, and can Occupational Therapy Association, 2011; family members (Adams et al., 2011; Ameri sts, 2002; Brumley and Hillary, 2002; Cruz, 2013; American Society of Health System Pharmaci Hebert et al., 2011; Meier, 2011; NASW, 2013, 2014; NQF, 2006; Pollens , 2004; Puchalski et al., 2009; Vitello, 2008). Impact of Hospice and Palliative Care on Longevity lliative care patients (including hospice Some evidence suggests that on average, pa patients) may live longer than similarly ill pati ents receiving usual care (Connor et al., 2007; Saito et al., 2011; Temel et al., 2010). Impact of Palliative Care on Quality of Life Palliative care has been associated with a hi gher quality of life, as measured by indicators e, emotional and spiritual communication, access to home car that include information and ghter symptom burden (Casarett e at time of death, and a li support, well-being and dignity, car et al., 2013; Temel et al., 2010). et al., 2008; Gomes et al., 2013; Rabow Prognosis Since was published in 1997, new predictive models have emerged Approaching Death that enhance clinicians’ ability to make valid and reliable medical prognoses. Lack of adequate eceiving appropriate hospice care because of prognostication may prevent some patients from r the 6-month prognosis rule in the Medicare Hospice Benefit (described in Chapter 5) (Fischer et al., 2006; Gwilliam et al., 2011; Krishman et al ., 2013; Pirovano et al., 1999; Tax Equity and 20 Fiscal Responsibility Act of 1982 ; IOM, 1997, Appendix D. For commentary on the 6-month rule, see, e.g., Groninger, 2012). Family Caregiving regiving is increasing. At the same time, With an aging population, demand for family ca the types of tasks being performed by family caregivers are expanding from personal care and household tasks to include medical/nursing tasks, such as medication management and other services for those near the end of life. Three in 10 U.S. adults are family caregivers (National et al., 2013; Reinhard et al., 2012). Information about the Alliance for Caregiving, 2009; Redfoot number and responsibilities of car nearing the end of life is not egivers specifically for those available. Conclusions ople with serious advanced illness and their Care near the end of life can be complex. Pe families could benefit from all clinicians having a basic level of competence in addressing the tients and their families may further require the palliative care needs of this population. Such pa ned in palliative care. ssionals specifically trai involvement of interdisciplinary teams of profe re facilities, nursing homes, in hospitals, long term acute ca Such care teams—whether available ices and expertise to me et the broad needs of hospices, clinics, or patients’ homes—combine serv rrently is unavailable in many geographic areas patients and families. However, palliative care cu 20 1982 (TEFRA), P.L. 97-248, section 122. Tax Equity and Fiscal Responsibility Act of PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

102 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life FAMILY-ORIENTED END-OF-LIFE CARE 2-45 THE DELIVERY OF PERSON-CENTERED, and in many settings where people with advan ced serious illness receiv e care. Transformational change is required, building on evidence about high-quality, compassionate, and cost-effective and available wherever patients nearing the end care that is person-centered and family-oriented to continue to build and stre ngthen that evidence base while of life may be. A further need is responding to challenges posed by new communica tion and biomedical technologies, growing demands on caregivers, and demographic change. Approaching Death (IOM, 1997) was published 17 years ago. Then, hospice was well on its way to achieving mainstream status, and palliative care was in the early stages of development. Now, hospice is in the mainstream, and palliative care is well established in , nursing, social work, and chaplaincy. Yet many hospitals and in the professions of medicine clinicians and families still appear to not regard palliative care as an essential component of high-quality care. The needed shift among the public and health care providers toward recognizing all that hospice and palliativ e care can achieve remains incomplete. Recommendation Government health insurers and care delivery progr ams as well as private health insurers should cover the provision of comprehensive care for indi viduals with advanced serious illness who are nearing the end of life. Comprehensive care should entered, family-oriented, and consistently be seamless, high-quality, integrated, patient-c • accessible around the clock; • social, and spiritual needs of individuals consider the evolving physical, emotional, hose of their family and/or caregivers; approaching the end of life, as well as t ise and training; • be competently delivered by professionals w ith appropriate expert • include coordinated, efficient, and interoperable information tr ansfer across all providers and all settings; and • be consistent with individuals’ values, goals, and informed preferences. ons should take the following steps to provide comprehensive Health care delivery organizati care: d have access to skille d palliative care or, All people with advanced serious illness shoul • when appropriate, hospice care in all settings wh ere they receive care (including health care facilities, the home, and the community). • Palliative care should encompass access to an in terdisciplinary palliative care team, including iative medicine physicians, nurses, social workers, and board-certified hospice and pall riatricians). ed (including ge r health professionals as need chaplains, together with othe Depending on local resources, access to this team may be on site, via virtual consultation, or by transfer to a setting with thes e resources and this expertise. hould be characterized by transparency and The full range of care that is delivered s • ures for all aspects e quality and cost meas accountability through public reporting of aggregat of the health care system rela ted to end-of-life care. The committee believes that informed PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

103 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 2-46 DYING IN AMERICA individual choices should be honored, including the right to decline medical or social services. PREPUBLICATION PROOFS COPY: UNCORRECTED Copyright © National Academy of Sciences. All rights reserved.

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116 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life THE DELIVERY OF PERSON-CENTERED, FAMILY-ORIENTED END-OF-LIFE CARE 2-59 Wong, D. T., and W. A. Knaus. 1991. Predicting outcome in critical care: The current status of the 38(3):374-383. Canadian Journal of Anaesthesia APACHE prognostic scoring system. and S. Fischer. 2013. Caring about prognosis: A Youngwerth, J., S. J. Min, B. Statland, R. Allyn, validation study of the CARING criteria to identify hospitalized patients at high risk for death at 1 8(12):696-701. Journal of Hospital Medicine year. Widera, and A. K. Smith. Yourman, L. C., S. J. Lee, M. A. Schonberg, E. W. 2012. Prognostic indices for older adults: A Systematic review. 307(2):182-192. Journal of the American Medical Association The MD Anderson supportive and Zhukovsky, D. S. 2008. Palliative care in pediatrics. Chapter 16. In 4th ed., edited by E. Bruera and A. Elsayem. Houston, TX: The University palliative care handbook, of Texas MD Anderson Cancer Center. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

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118 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3 Clinician-Patient Communication and Advance Care Planning There are many barriers to clear communica tion on people’s preferen ces for end-of-life patients’ wishes are known and followed ntioned, past efforts to ensure that care. Albeit well inte gislation and regulation, as a result of multiple have fallen short, even when codified into le factors: the natural reluctance of patients, families, • and clinicians to explore death and dying; • a fragmented health care system that can make the discussion of end-of-life preferences “someone else’s problem”; the conversations that are held, often in hurried or poor-quality communication in • crisis situations; and • ce care planning, including clinician training, inadequate structural supports for advan payment, and record keeping. The “living will”—conceived as a document de signed to protect people’s legal right to have the amount and kinds of medical treatment they want even if they can no longer express that choice themselves—was perceived as the solution for Americans’ concerns about being “hooked up to machines” for long periods or, co nversely, being protec ted against premature proach has been disappo intingly ineffective in “pulling of the plug.” Nonetheless, this legal ap improving the care people nearing the end of life that this care accords receive and in ensuring with their informed preferences. This chapter describes some of the reasons fo r that failure and the evolution of new and dvance care planning. These potentially more effective approaches to a approaches share the following features: anning a one-time activity, but instead • They do not consider advance care pl emphasize discussion of goals, values, and care preferences among individuals, an. Ideally, these ders over the life sp family, health care agents, and care provi discussions would start early in adul thood, addressing global values and the on makers, and focusing on more specific identification of potential surrogate decisi treatment preferences for older persons and those facing serious illness. With changes y. “Putting it in writing” d take on increasing specificit in health status, they woul substitute for remains important but does not the discussion. PROOFS UNCORRECTED COPY: PREPUBLICATION 3-1 Copyright © National Academy of Sciences. All rights reserved.

119 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-2 DYING IN AMERICA 1 • ; encourage adequate preparation They emphasize appointment of a health care agent of that agent for future decision making; and support discussions of care choices among individuals, the agent, and the primary clinician. ltural, ethnic, and spiritual values of They respect and accommodate the different cu • the diverse U.S. population. A measure of control over the final phase of life appears achievable in most situations today if patients, families, and clinicians have these essential conversations. The best experiences occur when there are reliable systems for elic iting, recording, and using information about patients’ preferences; when clinicians are trained to carry out these tasks effectively and are properly compensated for doing so; and when, re gardless of care setting—home, nursing home, pice care—patients’ wishes are litation facility, or under hos hospital, intensive care, rehabi stead, however, there are strong professional, known and respected to the extent possible. In for continuing treatment beyond cultural, and financial incentives the point where it benefits patients. This chapter examines the current state of advance care planning—who participates and and caregiver outcomes, and the costs of care. It the ways in which it affects clinical care, patient ect attitudes about and then describes the way age, disability, and pers onal background may aff experiences with advance care planning. Next, f undamental to the advance care planning process ians and patients, which can lead to shared is clear empathetic communication between clinic the elements of good communication in this decision making. Accordingly, the chapter explores process. This is followed by discussion of severa l model advance care planning programs and the committee’s proposed life-cycle model for advance care planning. The chapter ends by outlining findings, conclusions, and recommendations on research needs and presenting the committee’s alignment of care with patient preferences. BACKGROUND Americans express strong views when asked ab out the kinds of care they want when they earlier chapters, in general they prefer to die are seriously ill and approaching death. As noted in at home, and they want to remain in charge of re (CHCF, 2012; Fischer decisions about their ca et al., 2013; Gruneir et al., 2007; Tang, 2003). However, evidence suggests these wishes are not likely to be fulfilled: • der died in an acute care hospital, 28 In 2009, one in four adults aged 65 and ol percent died in a nursing home, and one in three died at home (Teno et al., 2013). Among all decedents, 30 percent were in an intensive care unit (ICU) in the month preceding death. 1 agents. A health care agent is an individual designated These individuals are variously called surrogates, proxies, or designated substitute decision maker, including a guardian in an advance directive, while a health care proxy is any or conservator. A surrogate is a person who, by default, becomes the decision maker for an individual who has no appointed proxy (HHS, 2008). In this report, the term “health care agent” is generally used. The form that names the agent is often called a durable powe r of attorney for health care. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

120 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-3 inpatients are incapable of making their • An estimated 40 percent of all adult medical own treatment decisions because of un consciousness, cognitive impairment, or inability to express a choice (Raymont et al., 2004). • cent cannot make their own medical Among nursing home residents, 44-69 per decisions (Kim et al., 2002). • Fully 70 percent of decedents participati ng in the Health and Retirement Study who were aged 60 and older at death and who f aced treatment decisions in the final days of their lives were incapable of participa (Silveira et al., 2010). ting in these decisions • The vast majority of critically ill patie nts cannot participate directly in decision making (Nelson et al., 2006), nor are they li kely even to have met the intensivist physicians caring for them (Gay et al., 2009). The Institute of Medi cine (IOM) report Approaching Death (IOM, 1997) reviews many of the then-recognized shortcomings of the advance di rective approach: patients’ and families’ lack of awarene ss of or interest in completing forms; • clinicians’ unwillingness to adhere to patients’ wishes; • difficulties in having meaningful family conve • rsations about patients’ wishes and in making choices in the face of prognostic uncertainty; lack of institutional suppor ng advance directives; and t and processes for completi • ance within the medical culture as well as • cultural and legal factors, including resist differences in families’ cultural traditions. A study of public views conducted around the same time that report was published reinforced these concerns (American Health Decisions, 1997). Respondents noted that there are many that it is upsetting or g about death, including reasons why they or their loved ones avoid talkin addressed in the future. They also felt that the medical system’s depressing or is an issue to be emphasis on achieving cure and sustaining life “eve n when death is inevitable—can ironically result in treatments that prolong life ‘ unnaturally’ and cause unnecessary suffering.” Some of the problems identified 17 years ago have since diminished or been remedied, nt. The mischaracterization of advance care while others have become more acutely appare planning as “death panels” duri ng debates about the Affordable Care Act (see Chapter 6) suggests that misunderstandings about the proces s have persisted and, indeed, intensified. s the four-decade history of advance The remainder of this section review ng, however, a note about these two terms is in directives/advance care planning. Before proceedi advance directives (documents draws a useful distinction between order. Approaching Death written or completed by patients) cept of advance care planning. As Box 3-1 and the broader con describes, advance care planning is a process for setting goals and plans with respect to medical treatments and other clinical considerations. It brings together patients, families, and clinicians patients’ goals, values, and preferences” (Walling “to develop a coherent care plan that meets the rdless of his or her current any point in a person’s life, rega et al., 2008, p. 3896). It can begin at ecomes more specific as changing health status health state; is revisited periodically; and b warrants. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

121 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-4 DYING IN AMERICA BOX 3-1 Terms Related to Advance Care Planning Advance care planning entails a number of different kinds of instruments. In this report, the committee has tried to maintain the distinctions among them, but the medical literature reviewed does not always do so, and there is confusion even in the field. Terms appearing in this report with respect to advance care planning are defined as follows, with the understanding that in discussing particular stud ies, the committee uses the terms employed by their authors. Advance care planning refers to the whole process of discussion of end-of-life care, clarification of related values and goals, and embodiment of preferences through written documents and medical orders. This process can start at any time and be revisited periodically, but it becomes more focused as health status changes. Ideally, these conversations (1) occur with a person’s health care agent and primary clinician, along with other members of the clinical team; (2) are recorded and updated as needed; and (3) allow for flexible decision making in the context of the patient’s current medical situation. Advance directive refers to several types of patient-initiated documents, especially living wills and documents that name a health care agent. People can complete these forms at any time and in any state of health that allows them to do so. Living will —a written (or video) statement about the kinds of medical care a person • does or does not want under certain specific conditions (often “terminal illness”) if no longer able to express those wishes. —identifies the person (the health care Durable power of attorney for health care • agent) who should make medical decisions in case of the patient’s incapacity. Medical orders are created with and signed by a health professional, usually a physician (in some states, a nurse practitioner or physician assistant), for someone who is seriously ill. Because they are actual doctor’s orders, other health professionals, including emergency personnel, are required to follow them. a physician orders — Physician Orders for Life-Sustaining Treatment (POLST) • covering a range of topics likely to emerge in care of a patient near the end of life— an innovation that began in Oregon in the early 1990s, gradually spread to a few states, is increasingly being adopted nationwide. The orders cross care settings and are honored in the community in an emergency. As of December 2013, the b POLST Paradigm Task Force had endorsed the POLST programs of 16 states, and another 12 states were developing POLST implementation plans (National POLST, 2012f). c do-not-intubate, do-not-hospitalize orders — medical orders • Do-not-resuscitate, covering specific treatments that are written in a health care facility, but do not cross care settings and are not necessarily honored in the community. An out-of- hospital do-not-resuscitate is a do-not-resuscitate medical order that pertains when a patient is outside of a health care facility setting (for example, a hospital or nursing home), and is intended to ensure that a patient will not be resuscitated against his or her wishes by emergency medical personnel. __________________________________ a The names of similar forms in different states va ry. They include MOLST (Medical Orders for Life- PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

122 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-5 Sustaining Treatment), MOST (Medical Orders fo r Scope of Treatment), PO ST (Physician Orders for Scope of Treatment), COLST (Clinical Orders for Scope of Treatment), POST (Physician Orders for Life-Sustaining Treatment), SMOST or SPOST (Summary of Physician Orders for Scope of Treatment), and TPOPP (Transportable Physician Order for Patient Pr eference). The approach is referred to as the POLST paradigm, and the state organizations or coalit ions that oversee the implementation of these medical order programs are referred to as POLS T paradigm programs. Program names vary among the uses POLST to apply to all these variations unless states overseeing these forms as well. This chapter th a different name. See also www.polst.org. the text is referring to a specific program wi b California, Colorado, Georgia, Hawaii, Idaho, Loui siana, Montana, New York, North Carolina, Oregon, Pennsylvania, Tennessee, Utah, Wa shington, West Virginia, and Wisconsin (Wisconsin has been endorsed only regionally). c near death will be unsuccessful and will only cause Because of the high likelihood that resuscitation injury and distress, the term “do not attempt resuscitation” is also used. It has been suggested that “allow natural death” may be a less threatening term than “do-not-resuscitate” (Venneman et al., 2008). As anticipated in Approaching Death , the current emphasis ha s evolved considerably ing wills to acceptance of the more general from a debate about specific legal forms and liv ng (Sabatino, 2010). Because much of the large body of research concept of advance care planni an the broader and more ngible product) rather th in this area focuses on advance directives (a ta difficult to document topic of advance care planni likewise talks about directives. ng, this chapter It should be noted, however, that while the committee consistently found shortcomings in e potential benefits of advance directives, it is more optimistic about th advance care planning. The following historical review draws on a repo rt prepared by the Department of Health . That and Human Services (HHS, 2008) titled Advance Directives and Advance Care Planning report resulted from a request by Congress in 2006 that HHS conduct a study of advance directives and how to promote their use. For decades, people with advanced serious illnesses relied almost unquestioningly on that physicians would act in their physicians’ judgment regard ing treatment matters, trusting professional and personal ethics. As technology and their patients’ best interests as a matter of entions could keep peopl medicine advanced, increasingly intensive interv e alive with breathing tubes and feeding tubes and hi gh doses of powerful drugs. In many cases, people recovered and ies sustained were not resumed their former lives, but in other cases, the lives these technolog optimal. Around the time public awareness of the dark er potential of “heroic measures” was ericans sought to assert their growing, so was the consumer right s movement. In that context, Am right to control whether life-sustaining treatments were used in their care, especially when the outcome was doubtful. Among the earliest attempts to codify this new right was the California 2 directives of written advance (Towers, 1978), which made the Natural Death Act of 1976 ns. The California law was quickly followed by terminally ill patients binding on their physicia . In 1990, Congress passed state and federal courts similar actions in other states and upheld in 3 care facilities receiving which required all health the Patient Self-Determination Act, o ask patients whether they have advance reimbursement from Medicare or Medicaid “t , and to incorporate advance ation about advance directives directives, to provide inform 2 Natural Death Act , Ch. 1439, 1976 Cal. Stat. 6478 (enacting Cal. Health & Safety Code §7188 (repealed 2000)). 3 , Public Law 101-508 §§4206 and nibus Budget Reconciliation Act of 1990 The Patient Self-Determination Act, Om 4751, 104 Stat. 1388-155 and 1388-204 (1991). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

123 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-6 DYING IN AMERICA age for subsequent emphasis on directives into the medical re cord” (HHS, 2008), setting the st this type of form. Public concern about advance di rectives increased in the wa ke of several well-publicized legal cases that centered on the right to withdraw treatment fr om people lacking decision-making otocols—medical orders capacity. At the same time, new state laws outli ned do-not-resuscitate pr as well as within the hospita signed by a clinician—for use outside l. Building on this concept of having medical orders in place to guide treatm ent, a new model was pioneered in Oregon for recording a broader range of preferences. These Physician Orders for Life-Sustaining Treatment mber of states (see Box 3-1) and described (POLST), now being approved in an increasing nu emergency situations. later in this chapter, are actionable in and out of the hospital, even in Regional and national efforts to encour age advance care planning have evolved. 4 Community Conversations on Compassionate Care (CCCC), operating in Upstate New York, ual leaders in Rochester, New York, in 2002 to was launched with a press conference of spirit ng discussions. The early advance care planni encourage everyone aged 18 and older to start ely in the Midwest and throughout the United Center for Practical Bioethics works extensiv States to effectively engage religious, veterans, and other various population groups through organizations with which they are connected and makes advance directives and related resources ® 5 available through its Caring Conversations Nationally, the American Bar initiative. 6 Association Commission on Law and Aging has produced a comprehensive “Consumer’s Toolkit for Health Care Advance Planning” covering important issues such as selecting a health care agent and weighing odds of survival, as well as state-specific advance care planning 7 has been information (American Bar Association, 2005). National Healthcare Decisions Day held on or near April 16 sin ce 2008. This 50-state public awareness campaign is designed to prepare a living will, to advise them where to motivate people to select a health care agent and sources that can help in having difficult obtain these documents, and to link them to re 8 was launched by author Ellen Goodman conversations. More recentl y, The Conversation Project in 2010 as a grassroots public campaign designed to change a nd increase the conversation around end-of-life care long before a medical crisis o ccurs (see Chapter 6 for more detail on these and other initiatives). Medicare covers a one-time initial preventive physical examination (the Welcome to includes end-of-life planning as a required service for Medicare Medicare Preventive Visit) that , 2012a). Although this is a one-time service for which the beneficiaries who desire it (CMS illions of beneficiaries newly enrolled in 2011, physician is paid, it is seldom used. Of the m only approximately 240,000 (CMS, 2012b); the number Medicare paid for preventive visits for anning information is unknown, but was undoubtedly who chose to receive the advance care pl smaller. At present, all 50 U.S. states and the Distri ct of Columbia have laws supporting advance at is often called a durable a health care agent (through wh directives and the appointment of 1) (Gillick, 2010). An examination of policies power of attorney for health care; see Box 3- 4 https://www.compassionandsupport.org/index.php/for_patients_families/advance_care_planning/ community_conversations. 5 g-conversations. g/resources/carin https://www.practicalbioethics.or 6 http://www.americanbar.org/groups/law_aging.html. 7 http://www.nhdd.org/public-resources. 8 http://theconversationproject.org/. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

124 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-7 9 found that “the U.S. ives in a dozen large nations around the world regarding advance direct stands alone in terms of atten tion paid to advance directives , perhaps due to the emphasis on individual rights and [a] highl y litigant system” (Blank, 2011, p. 210). This chapter examines 40 years has accomplished. what the U.S. effort in this area over the last (For a discussion of the panels, see Chapter 6.) 2009 controversy over death THE CURRENT STATE OF ADVANCE CARE PLANNING AND WHAT IT ACHIEVES The ethical principle of aut onomy underlies much of the thinking about advance care planning in the United States. But the principl e of autonomy—particularly with a growing segment of the population that highly values ot her principles, such as family cohesion—is showing signs of stress. Trying to determine in advance how one might want to be treated in ). Moreover, according ematic (Loewenstein, 2005 some hypothetical future state is highly probl thics (2005, p. xix), the process gi ves “major ethical weight to to the President’s Council on Bioe y. But in so doing, it e in self-sufficienc personal autonomy and choice and personal prid human interdependence and of our unavoidable need for human deliberately ignores the truth of presence and care.” And human presence and care are exactly what is needed by the their own decisions near the end of life. overwhelming proportion of people unable to make Who Have Made Their Wishes Clear? It’s always too early, until it’s too late. —The Conversation Project, 2013 Most people have no documentation of their wi shes regarding end-of -life care, and few ian about the subject (C have talked with either their family or physic lements, 2009). (See also the subsequent discussion of specific population groups.) A 2013 national survey of nearly 2,100 Americans aged 18 and over found that, while 90 percent believe having family conversations , fewer than 30 percent have done so (The about wishes at the end of life is important Conversation Project, 2013). alth hospices and as an independent healthcare ethics I have served as a clinical chaplain in home he consultant and educator for comm unity-based organizations over the past ten years. I have learned over this time that it is extremely difficult for patient s and their families and caregivers to address end-of-life decisions. Changes in the patient’s physical, mental, a nd spiritual states, the news of the diagnosis, the unity at large, all contribute to the emotional impact on family, friends, caregivers, and even the comm stress of decision-making at th * is point in a person's life. ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. According to results of a 2012 survey (CHCF, 2012), the demographic groups most likely nd-of-life issues with a loved one to have had a discussion about e were those aged 65 and older, , and those with one or more chronic conditions whites, people with higher education and income 9 Germany, India, Israel, Japan, Kenya, Netherlands, Taiwan, The other countries in this review were Brazil, China, Turkey, and the United Kingdom. Usage of advance directives is low in other countries, even in those whose legal systems allow them (Blank, 2011). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

125 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-8 DYING IN AMERICA (see the next section for discussion of diffe rences among population groups). And while 42 percent of respondents reported having such a discussion, only 23 pe rcent had put their wishes in writing. More than th ree-quarters of res pondents said they w ould “definitely” or “probably” want to talk with th eir doctor about their wishes for medical treatment toward the end of life if they were seriously il l (47 and 32 percent, respectively ); however, more than 90 percent said a doctor had never asked them about thos e issues. Among respondents aged 65 or older— the prime age group for having chronic illn esses—84 percent had not been asked. The older people are, the more likely they ar e to have participated in some kind of shown in Table 3-1. Other fact ors that increase the likelihood advance care planning activity, as of having an advance directive include more education, having a close family member or ose family member who died with pain or confidant, recent hospital admission, and having a cl . Although marital status a nd number of children did not suffering (Carr and Khodyakof, 2007) affect the likelihood of having an advance dir ective in the study by Carr and Khodyakof (2007), tly less likely than t those with dependent children were significan hose without dependent children to have any advance care planning documents in place (Nilsson et al., 2009). TABLE 3-1 Participation in Advance Care Planning Activities, U.S. Adults Associated Press - California National Council on Aging (NCOA)- HealthCare National Opinion Upstate New d United Healthcare- Foundation York, Research Center a c b 2013 (CHCF), (AP-NORC), USA Today, 2013 2013 (working-age 2012 (all ages) (%) (people 60+) (%) (people 40+) (%) population) (%) 47 54 23 Have an advance directive 42 (higher among 62 41 Discussed care preferences with a those 65 and older) loved one Designated a health 49 — 58 care power of attorney (or equivalent) SOURCES: a (AP)-National Opinion Tompson et al., 2013: telephone survey conducted by the Associated Press s Research from February 21 through March 27, 2013, Research Center (NORC) Center for Public Affair among a nationally representative sample of 1,0 19 American adults aged 40 and older. b Penn Schoen Berland from April 4 through May 3, NCOA et al., 2013: telephone survey conducted by 2013, among a national sample of adults, including 1,007 respondents aged 60 or older, and an including those with three or more chronic health oversample of low-income adults aged 60 and older, conditions and those living in Birmingham (Alabama), Indianapolis (Indiana), Los Angeles (California), Orlando (Florida), and San Antonio (Texas). c CHCF, 2012: statewide survey conducted by Lake Research Partners from October 26 through 1,669 Californians aged 18 and older, including 393 November 3, 2011, among a representative sample of respondents who had lost a loved one in the previous 12 months. d sations on Compassionate Care, March 1, 2014. Personal communication, P. Bomba, Community Conver of a Community Conversations on Compassionate Care Upstate New York data were collected as part ducation efforts around advance care planning project that engaged in community-wide e _patients_families/advance_care_planning/commun (http://www.compassionandsupport.org/index.php/for ity_conversations). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

126 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING CLINICIAN-PATIENT COMMUNICATI 3-9 According to the HHS (2008) review, advance car e planning is least likely to take place in hospitals and intensive care settings, perhap s because of patients’ physical, mental, or cognitive state or because the overriding impulse is to provide what the authors call aggressive treatment. By contrast, nursing home residents ar e more likely than individuals in other care settings to complete advance directives. Why People Do Not Participate in Advance Care Planning Many factors contribute to whether people comple te some sort of advance directive form. For example, people who believe doctors, not patie nts, should make decisi ons about health care gnificantly less likely to complete a form (Carr and those who have a greater fear of death are si and Khodyakov, 2007). However, when people reluctant to complete advance directives hear the personal stories of others who have had to make end-of-life decisions for a loved one without their family from these painfu any guidance, the desire to save l experiences can become a prime motivator for putting their own wishes in writin g (Halpern, 2012a; Steinh auser et al., 2000a). The many and varied requirements embedded in state laws covering advance directives also discourage their completion. Problems include poor readability and lack of clarity in some on who can serve as health car e agents and limitations on their state-mandated forms; restrictions authority; procedural requirements, including the need for witness signatures or notarization; inadequate reciprocity across states; and inadequate reflection of different religious, cultural, and social characteristics of individual s and families (Castillo et al., 2011). s (2010, p. 2329), advance care planning According to Fried and colleague “may best be understood as a health behavior, for which indi viduals have highly vari ed motivation, barriers regarding their participation.” It and facilitators, and self-efficacy may be efficacious to tailor information to the readiness of individuals to participate in specific advance care planning activities, an approach similar to how the stages of change model has be en used to help people 10 smoking cessation (O rleans and Cassidy, 2011). adopt health-promoting behaviors, such as A planning would approach people differently stages of change strategy for advance care depending on whether they needed help in comple ting an advance directive, naming a health care agent, or communicating their pr eferences to their physician or family members (Fried et al., s to participate in each of these activities. 2010). Individuals vary greatly in their readines A 2012 California survey (CHCF, 2012) asked a dults (all ages) whether they had spoken with a loved one about their wishes for end-of -life medical treatment. Among those who had not, the most important reasons given were about right now (41 percent); too many other things to worry • • don’t want to think about death or dying ( 26 percent), cited by 38 percent of Latinos and 26 percent of Asians and Pacific Islanders, but only 15 percent of African Americans and of non-Latino whites; and family member did not want • to discuss it (13 percent). 10 as precontemplation (not thinking ew, the stages of change are specified In the Orleans and Cassidy (2011) revi ing about participating in the next 6 months), preparation about participating in the activity yet), contemplation (think (planning to complete the activity in the next 30 days), action (participated in the activity within the past 6 months), and maintenance (participated in the activity more than 6 months ago). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

127 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 3-10 Another reported reason patients (versus the public) do not partic ipate in advance care planning is that they “would rather con centrate on staying alive than talk about death” (Knauft et al., 2005, p. 2190; Ganti et al., 2007). Reluctance to engage in advance care pla nning sometimes originates in patients’ sense that the initiative to do so shoul d come from clinicians—hence “t he importance of clinicians bringing up advance care planning with their patie nts who may be fearful of discussing the topic with family or be waiting for some one else to hipps et al., 2003, p. 553). initiate discussion” (P Finally, people often do not realize they have a termin al disease, what that di sease is, or that they are dying (Gardiner et al., 2009). My mother died in January 2012. She was in a nursi ng home for the last seven weeks of her life and in a hospital for two weeks prior to that. At no time did a doctor or nurse say to me, “I’m sorry, but there is nothing we can do for your mother—let’s plan for her to have an easy death. * ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. The Choice of a Health Care Agent e agent, the following general points apply: With respect to the choice of a health car Married people overwhelmingly choose • their spouse (Carr and Khodyakov, 2007). Spousal proxies have been found to be more accurate than adult children in their assessment of an elder’s wishes (Parks et al., 2011; but see the quote below for a accurate than husbands (Zettel-Watson counterexample), with wives being more et al., 2008). • Unmarried and widowed parents choose a chil d and rarely some other relative, friend, or professional, although in families with only one or two children, a child is less likely to be selected (Carr and Khodyakov, 2007). People without a spouse or children choose another relative, such as a sister or • brother or perhaps a friend or colleague (Carr and Khodyakov, 2007). My mother was 99 when she fell, fractured her hip, had a mild heart attack, and became unconscious. ere said she needed a hip EMTs [emergency medical technicians] took her to th e hospital. The surgeon th operation to relieve the pain. I knew Mom would not want that. For several years, she had told me and my stepfather that she “was ready to go” and di dn’t care about living to 100. Her quality of life had clearly deteriorated. e was surrounded by beeping monitors and tubes, with nurses running in When I saw Mom in the ICU, sh she couldn’t recognize anyone. She kept repeating, “I and out. Her head thrashed from side to side, and me go, let me go.” It was heartbreaking. already died once, why am I still here?” and “Let Some years earlier, Mom told me she had assigned me her healthcare durable po wer of attorney. I never asked to see the documents, because I thought it would be “impolite.” The day of Mom’s crisis, I found ieving, had healthcare power of attorney for Mom, and out that my stepfather, who was devastated and gr e operation, which was scheduled to begin in three I was merely the backup. Shockingly, he agreed to th hours, and I had no legal power to stop it. I had a hard talk with my stepfather and reminded him of Mom’s wishes. An hour before the operation, he for hospice at their facility. Three tive, who said Mom was eligible agreed to talk to a hospice representa PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

128 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING CLINICIAN-PATIENT COMMUNICATI 3-11 hours later, Mom was in a quiet, machine-free hospi ce room, on increased pain medication, looking much n hours later, in that peaceful state. I know we more tranquil, with calm, relaxed breathing. She died te did what she wanted.” ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. The above pattern is not universal, however, and “individuals will innovate to meet their own needs and the presumed needs of their loved ones” (Carr and Khodyakov, 2007, p. 188)— would be too stressful. Being a health care for example, when they believe decision making agent is a difficult job and an extra burden on an already stressed spouse, partner, parent, or parate their feelings from the needs of the child. Close family members may be unable to se ognosis or talk through the patient’s wishes, or be unable to situation, be unwilling to face the pr or with clinical sta ff. Family members who handle conflicts that arise among family members questions are less likely to str can answer yes to the following uggle with the agent role: Do you have prior experience as someone’s health care agent, and have you had prior conversations with ences? (Majesko et al., 2012). Box 3-2 lists some of the key the patient about treatment prefer s choice of a health care agent. considerations in an individual’ ailability of the agent. In a survey of An obvious and important consideration is the av almost 300 physicians regarding their recent ex periences with patient decision making, most sions for patients, for various reasons. One in (73 percent) reported having to make major deci agents, and one in four reported five reported difficulty contacting never having talked to agents personally (Torke et al., 2009). BOX 3-2 What to Keep in Mind When Choosing a Health Care Agent The person you select as an agent must: • Meet legal criteria (for example, be a competent adult and at least age 18 years) • Be willing to speak on your behalf Be willing to act on your wishes • Be able to separate his/her own feelings from yours • Live close by or be willing to come • • Know you well • Understand what is important to you • Be willing to talk with you now about sensitive wishes Be willing to listen to your wishes • Be able to work with those providing your care to carry out your wishes • Be available in the future • Be able to handle potential conflicts between your family, close friends • SOURCE: Compassion and Support, 2010, p. 7. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

129 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-12 DYING IN AMERICA s. Thus even if a for authorizing surrogate Most states have established default systems proxy form is not signed or if the chosen health ca re agent is not reasonably available, a priority list of people who can make decisi ons if the patient cannot is genera lly in place. State laws vary, ith the immediate family. In some states, lists include domestic but such lists generally start w partners or close friends or senior officials in religious organizations, and in some, they include physicians, often in consultation with an ethics committee or other physic ian (in other states, physicians cannot take on this role). To the exte nt possible, default surrogates are charged with making decisions (substituted j possible the patient’s likely udgment) reflecting to the extent decisions, best interests, instru ctions if any, or personal values (American Bar Association, 2009; 11 eir wishes, however, If patients have no t thoroughly discussed th Kohn and Blumenthal, 2008). s, can accurately gauge what those preferences it is unlikely that surrogates, even family member would be despite believing to the Blumenthal, 2008). contrary (Kohn and they fall short, for example, in serving Although surrogacy laws meet most situations, families in which intergenera tional and group decision making are highly valued or cultural non-family member as health ca re agent (Kohn and Blumenthal, groups more likely to select a care proxy statutes is that people will have 2008). Further, the underlying presumption of health a spouse, child, sibling, or clos e friend whom they can name as their agent. Many people, While data on the number of such people are especially among the elderly, have no such person. of the nursing home population alone (Karp and lacking, they may represent 3 to 4 percent Wood, 2003). In many states, should they beco me unable to make or communicate their own to make those decisions unless a court deems health care decisions, no one has the authority Since such guardians may be strangers with them legally incompetent and appoints a guardian. little or no evidence of the patient’s prior wishes , there is no assurance their decisions will be what the patient would have chosen. In the abse nce of clear guidance from the patient and in t the patient’s various decision often is to trea light of the consequent uncertainty, the default conditions regardless of likely benefit. Do Clinicians Follow Patients’ Previously Expressed Wishes? Data on the impact of advance directives on the treatment received by patients suggest large study, for example, 92 percent of people had that directives are not always followed. In one recorded a preference for what the authors call co mfort-focused care in their living will, but this with treatment delivered” (Kel desire was “poorly correlated ley et al., 2011, p. 240). In a study fe-extending treatment in the last week of life of advanced cancer patients, 13 percent received li despite a stated preference for treatment focused scomfort (Mack et al., on relieving pain and di 2010b). While the predominant conversation about advance care planning focuses on people who recent controversy over cal interventions, the want to avoid intensive and nonbeneficial medi “death panels” (see Chapter 6) makes clear that many Americans worry about being denied care, and some clinicians believe patients may fear they will give up on care too soon (Gutierrez, ract, do want every treatment the health system 2012). Yet while some people, at least in the abst 2010), a study of people aged 60 and older at can offer (Pew Research Center, 2013; Veysman, rcent (10 subjects) of those with a living will the time of death revealed that fewer than 2 pe 11 Ostensibly, these laws provide the maximum feasible protection of the wishes of the incapacitated person and “the fundamental right to make health care decisions for oneself” (Kohn and Blumenthal, 2008, p. 9) (as expressed in the laws of Illinois, Louisiana, and Utah, for example). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

130 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING CLINICIAN-PATIENT COMMUNICATI 3-13 wanted “all care possible” (Silveira et al., 2010). In another study, involving people with advanced cancer who were aware they were term inally ill, just 17 percent wanted supposed life- extending treatment (Mack et al., 2010b). If patients with serious advan ced illness receive less intensive treatment than desired, the difference may reflect a lack of treatment opti ons. For example, one study found more frequent mismatches between desire for intensive treatment and services received for patients with cancer than for those with congestive heart failure or chronic obstr uctive pulmonary disease. The authors conclude that “it is proba ble that many [cancer] patients re ached a point in the course of ed regardless of the patient’s preferences” their illness where treatment options were limit (Cosgriff et al., 2007, p. 1570). Physician Concerns Several studies have explored the extent to which physicians comply with directives such eir actions in this regard. One such study found as living wills and what factors may influence th that most primary care physicians would honor a pa tient’s advance directiv e even if it were 5 years old (80 percent) or even if the patient’s s pouse requested continue d resuscitative care 12 (74 percent). n, including for a th ird and a half of Fear of legal liability was a concer tions, respectively (Burkle et al., 20 respondents in these situa 12), and for a large percentage of emergency physicians (58 percent) (Marco et al icians believe their ., 2009). In general, phys liability risk is greater if they, mistakenly, do not attempt resuscitation than if they provide it against patient wishes (Burkle et al., 2012). As in so e default is to treat. many other instances, th st 60 percent of the physicians in their Burkle and colleagues (2012) found that almo study were not likely to honor the wishes of pa tients whose advance dir ectives indicated they wanted to “pass away in peace” if such patients were in a sudden acute situation (ventricular fibrillation) and likely to be tr eated successfully (including 45 pe rcent who consid ered it unlikely 14 percent who were unsur that they would honor the advance directive and e). The fact that the ch a situation suggests that, despite several remainder would honor patients’ directives in su ians remain confused about the purpose and decades of experience, some 40 percent of physic interpretation of advance dire ctives. This is true even am ong emergency medical personnel and hospital residents likely to be called upon under urgent circumstan ces. Several small studies have instructions apply even shown that some clinicians assume a living will’s if the patient does not istent unconsciousness (M have the requisite terminal condition or pers irarchi et al., 2008, 2009, 2012). System/Logistical Challenges of those preferences Patients’ advance care preferences cannot be fo llowed if the record s change over time and with cannot be found and/or is not up to date. People’s preference al., 1999), which may partially Ditto et al., 2006; Chochinov et hospitalization (Fried et al., 2007; ffer from what is documented in their medical explain why the actual preferences of patients di eagues (2010) found that advance directives for record (Volandes et al., 2012a,b). Yung and coll said they gave them to their 53 percent of patients (aged 75 and older and in fragile health) who health care provider were not in there any indication of their their medical record, nor was 12 By contrast, a survey involving more than 10,000 physicians found that more than half (55 percent) would not consider halting life-sustaining therapy because the family demanded it; for 29 percent, that decision would depend on circumstances (Kane, 2010). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

131 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-14 DYING IN AMERICA existence. This percentage was much higher—83 percent—for a separate cohort of patients aged 65 and older and also in fragile health. For patients who said th ey had not provided an advance directive to their provider but had communicated information about their health care agent, that person’s name and contact information was in th e medical record zero percent of the time for patients under age 75 and 16 percent of the time for those aged 75 and older. ation and the patient’s wishes, recording Even if the clinician remembers the convers health-care system that relies on teams of providers in different those preferences is critical “in a settings” (Yung et al., 2010, p. 866) and in which fre quent care transitions occur near the end of nuity of advance care planning life (Lakin et al., 2013). Research ers attempting to track the conti documentation across care settings found that when patients transitioned fr om provider office to hospital or emergency department, the likeli hood that advance care planning documentation would be available and/or in concordance “w as no greater than ch ance” (Yung et al., 2010, p. s later in this chapter, data 865). As discussed in detail in the section on electr onic health record ility, availability, and standards for electronic health records that he lp promote document portab agreement do not require robust documen tation of advance care planning. diatric patients entails several particular The implementation of advance directives for pe nt personnel are uncomfortable honoring them, barriers. For example, emergency departme schools may not accept them, and parents seeking to honor their children’s wishes encounter hers (Lotz et al., 2013). negative reactions from ot Conflicting Views ctive instructions There are two schools of thought regarding how binding advance dire should be: one is that they should be followed stri ctly, and the other holds that “it is simply not possible for people to anticipate [t heir future] decisions about lif e-preserving treatment with any ., 2005, p. 297; Bomba et al., 2012). degree of accuracy” (Sahm et al Further, prior instructions may not fit the current situation or reflect adva nces in treatment options. These problems, it is ng of many advance planning said, are compounded by the lack of clarity in the wordi documents. The question is not just what they mean in some abstract sense but what they meant to the person who completed them, who now can no longer amplify or explain and whose mind may have changed with time and altered circumstances. A German study found that nonclinicians had a much more flexible approach than ng advance directives (Sahm et clinical personnel to interpreti al., 2005). The authors conclude that the uncertainties around d rong argument for employing sound clinical ecision making are a st judgment in the final phases of a pa tient’s life. They suggest that a preferable altern ative to rigid care planning, which can take into account a advance directives is comprehensive advance broader array of issues and soci al relationships and can include spiritual and cultural matters, as well as practical concerns. Taking this argument a step further are those who recommend that advance care planning’s main objective should not be to make advance treatment decisions, but “to prepare possible in-the-moment ians to make the best patients and surrogates to work with their clinic medical decisions” (Sudore and Fried, 2010, p. 259). It lth care agents need is suggested that hea this flexibility because they will have to live wi th the decisions they make (Vig et al., 2006). In gave their surrogates leeway to consider the one study, the majority of patients (55 percent) fy processes rather than outcomes in their benefits and burdens of treatment and “speci preferences for end-of-lif e care” (Shapiro, 2012, p. 226). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

132 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-15 CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING ectives occur in certain typical situations: Conflicts in the implementation of advance dir or intensity of care that, at the time of the event, is judged by when the directive requests a type clinicians or family not to be in the patient’s best interest, and when the health care agent quest. State laws differ regardin g the circumstances under which disagrees with the patient’s re families can override advance directives. In a ddition, many hospitals have non-beneficial care policies and/or refer such cases to the Ethics Committee for resolution. Does Advance Care Planning Affect Patient and Caregiver Outcomes? Advance care planning influences the quality of care and patient and family satisfaction in several ways: • anning generally but not always choose People who participate in advance care pl treatment focused on relievi ng pain and discomfort over life-extending treatments and enroll in hospice earlier, thereby avoiding many physical and psychological stresses (Mack et al., 2010b; Wright et al., 2008). Advance care planning gives patients and fa • milies the opportunity to start preparing mentally and emotionally for death (Stei nhauser et al., 2000a; Martin et al., 1999). • Advance care planning supports several of the primary concerns of people with life- communication, shared decision making limiting illnesses: st aying involved, clear ng control (Edwards et al., 2010; Martin (Steinhauser et al., 2000b), and maintaini et al., 1999). By stating the kind of care th • s may alleviate the burden of ey want in advance, patient decision making on family members (D etering et al., 2010; Billings, 2012). Among children and youth, participation in systematic advance care planning • programs may enhance positive emotions and facilitate communication, lead to ntilator support and addition treatment modifications (for example, withdrawal of ve death occur at home (Lotz et al., 2013). of opioid analgesia), and support having 13 Comparing the survival of patients w ith and without advance care planning before stem that those without such documents cell transplant therapy revealed were significantly more likely to die within a year of transpla nt than those who had them (Gan ti et al., 2007). This finding led to patients and that those “who discussions were not deleterious researchers to conclude that the did not engage in [advance care planning] were th e most likely to face a situation in which [it] might have helped” (p. 5647). Another study found th at discussions of do-not-resuscitate orders did not result in worse psychosocial functioni ng, including greater anxiet y or depression, among vers (Stein et al., 2013). either patients or caregi The impact of advance care planning for th udied, and the results e elderly has been st parallel those found in other popul such discussions, most often ation groups. Elders do engage in with family present, if given an opportunity to lues, and beliefs; to reflect on their goals, va articulate and document their tr eatment preferences; and to choose a health care agent. Those as likely to have their end-of-life wishes both who have these discussions are almost three times 13 one or more of the following: a living will, a power of Advance care planning is defined in this study as having ti et al., 2007). No distinction is drawn between completion attorney for health care, or life support instructions (Gan of such a document with and without comprehensive discussion with the physician. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

133 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-16 DYING IN AMERICA known and followed, and their family members su ffer significantly less stress, anxiety, and 14 depression after their loved one’s death (Detering et al., 2010). e planning among people with heart failure, Research related specifically to advance car chronic obstructive pulmonary disease, cancer, an d dementia, discussed in Annex 3-1 at the end of this chapter, provides many insights into the role of advance care planning in several of the most common causes of death in the United States. It reveals that for each of these conditions, high-quality palliative care, which includes the go al-setting activities of advance care planning, would be an important parallel focus of treatment, but in each case is not the current standard of care. What Are the Effects of Advance Care Planning on Health Care Agents and Families? ily members) are critically tes (including those who are fam Health care agents and surroga e residents with decisional impairment (Kim important for the 44 to 69 percent of nursing hom large numbers of geriatric patients who retain et al., 2002). Agents may also make decisions for to family members (Vig et al., 2007). decision-making capacity yet defer decisions health care agents—which too often they are Even when patients’ preferences are clear to not (Fried and O’Leary, 2008)—the decisions th ese agents must make do not come without difficulty (Schenker et al., 2012). Moreover, “sur rogates are not perfect ambassadors of patient 1688). Often, caregivers (usually family members) want life- preferences” (Vig et al., 2006, p. sustaining measures used even when patients do not (Phipps et al., 2003). At times, health care s with patients’ expressed wishes (to die at agents may be required to make a decision at odd home, for example) when clinical circumstan ces evolve differently than anticipated. inevitably are colored by their own wishes and care Health care agents’ decisions lming responsibility, religious beli preferences, feelings of overwhe efs, and the desire for family consensus (Fritch et al., 2013; Sche ith health care agents have nker et al., 2012). Interviews w ey make their decisions: conversations with revealed the broad range of bases on which th and preferences, input from others close to the family, shared patients, the agents’ own beliefs itten documents (Vig et al., 2006). values and life experiences, and wr When health care agents cannot meet patients’ requests, they feel regret or guilt that may 15 lead to complicated grief and bereavement (Topf et al., 2013; Fried and O’Leary, 2008). and sometimes long-term negative psychological Family decision making can have a significant impact, including stress, guilt, doubt, grief, and even increased thoughts of suicide, especially ; Wendler and Rid, 2011). Wendler among spouses (Abbott et al., 2013 and Rid (2011) reviewed of problems commonly and identified a number the literature on health care agent stressors at least partly remediable (Table 3-2). reported by agents, some of which appear to be 14 Of those receiving the advance care patients’ wishes were unknown; 3 planning intervention, 10 percent of percent of patients’ wishes were known but not followed. 15 both depression and posttraumatic stress disorder. For a Complicated grief is long-lasting and shares elements of full description, see http://www.health.harvard.edu/fhg/updates/Complicated-grief.shtml. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

134 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING 3-17 CLINICIAN-PATIENT COMMUNICATI Stresses on Health Care Agents and Examples of Potential Remedies TABLE 3-2 Stressor Potential Remedy Uncertainty about patient preferences More thorough advance care planning Uncertainty about prognosis Conve rsation about key decision points Discomfort with the hospital Familiarizing family members with the hospital; explaining why certain procedures are followed, who environment directs various aspects of care, and whom to ask for what Ensuring that information is conveyed in a thorough Discomfort with the logistics of making decisions and unhurried manner; use of a shared decision-making model Poor communication by clinicians Targeted communication training for clinical staff; limiting the number of clinicians with whom the health care agent must deal Providing support and positive reinforcement for health Uncertainty and guilt care agent decisions and adequate subsequent counseling SOURCES: Majesko et al., 2012; Vig et al., 2007; Wendler and Rid, 2011. Risk factors for complicated grief among be reaved caregivers include fewer years of education, younger age of the deceased, and lower satisfaction with social support (Allen et al., 2013). The care provided by hospices may lead to positive health outcomes, including survival, ople avoid long-term depression and other among the bereaved and may help some pe consequences of complicated grief (Christaki s and Iwashyna, 2003). A hospital-based family support specialist who maintains connections with health care agents can provide emotional, communication, decision, and anticipatory grief support (White et al., 2012). Negative mental health effects among family members of ICU patients in one study were markedly higher (reaching 82 percent) if family members believed the information received from the staff to be too rushed, unclear, or incomplete or if they shared in end-of-life decision making advance directive reduces bereaved family members’ concerns (Azoulay et al., 2005). Having an about physician communication or lack of information (Teno et al., 2007). Health care agents may also be helped by previous decision-ma king experiences; effective coping strategies; decisions will result in a “good” outcome; and supportive life circumstances; a belief that their having a clinician who is available and who pr ovides frank information, recommendations, and respect (Back et al., 201 0; Vig et al., 2007). An approach to working with families that supports both emotional reasoning and medical requirements has been suggested, allowing patients, families, and physicians to “expand ing and symptomatic treatments and attend to their medical focus to include disease-modify underlying psychological, spiritual, and existent ial issues” (Back et al., 2003, p. 439). Health other family members and the epared, who have the support of care agents who have been well pr out their role will be onable leeway in carrying clinical team, and who have been given some reas ting negative effects. Effective pr eparation has been shown to be able to do so with fewer long-las facilitator (or other is guided by a trained best achieved when the patient-agent discussion ity to discuss concerns, and when patient knowledgeable person), when there is on opportun treatment are corrected (Fried et al., 2002; misconceptions regarding the likely outcomes of PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

135 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-18 DYING IN AMERICA Jezewski et al., 2007; Kirchhoff et al., 2010). Grief and bereavement are a natural corollary to losing a loved one; unrelieved st ress-related problems are not. Does Advance Care Planning Affect Health Care Costs? The purpose of comprehensive advance care pla nning is to ensure that people receive the care they desire and minimize the burden on their families. In doing so, an additional benefit may be lower health care costs. This is useful to know given that proposals to expand and improve ly be met with the argument that they are advance care planning programs will almost certain “too expensive.” The evidence presented in th st the contrary. is section suggests ju ss the impact of advance care planning on Several large studies have attempted to asse health care costs. One found no association be tween advance care planning (either reported completion of an advance directive or discussi on of care preferences) a nd Medicare expenditures in the last 6 months of life (Kelley et al., 2011). Another stu dy compared costs for people who had “treatment-limiting advance directives” and t hose who did not (Nicholas et al., 2011). People with such directives had lower rates of life-sustaini ng treatment (34 percent versus 39 percent), versus 43 percent), and were more likely to use were less likely to die in the hospital (37 percent re statistically significant. hospice (40 percent versus 26 percen t). All these care differences we But again, median fee-for-service Medicare sp ending in the last 6 months of life was not significantly different for the two groups ($21,008 for the treatment-limiting group versus $21,614 for the group without a treatmen t-limiting advance directive). ding for decedents in low-spending regions Another analysis of this study compares spen of the country (who were significantly more likely to have a treatment-limiting advance higher-spending regions (Nicholas et al., 2011). directive) with spending for decedents in Although the two groups had similar cause-of-death and comorbidity patterns, the costs of care in the last 6 months were subs tantially different. The largest differential was between spending rective in low-spending regions ($14,153) and for people with a treatment-limiting advance di spending for those without a directive in hi gh-spending regions ($26,616) . These data further suggest that having an advance di rective made no statistically si gnificant difference in predicted spending in the low- and medium-spending region s; in the high-spending regions, however, a imarily as a result of lower treatment-limiting advance direct ive might save $5,585 per death, pr atistically and economically hospital utilization rates. Thus , this study demonstrates “a st significant relationship between ad vance directives and regional practice patterns” (Nicholas et al., 2011, p. 1452). A large portion of hospital costs at the end of life is associated with ICU care. One study found that among Americans who died, the cost of a terminal hospitalizati on with an ICU stay was an estimated $38,000, compared with $13,000 if ICU care was not included (both of these figures are in 2010 dollars) (Zilberberg and Shorr, 2012). Assessing patients’ end-of-life preferences and providing care c ongruent with their ed by different clinicia ns and institutions, values, along with coordinating the care provid In one such model program, the Sutter Health produces important improvements in clinical care. ation of approaches appeared to save about Advanced Illness Management program, this combin $2,000 per month per patient in dire ct care costs (Meyer, 2011). Lower rates of hospital deaths rollment occur when the care and higher rates of hospice en team pays attention to more than patients’ phys to their religious and ical condition—specifically, al., 2012). Such whole-person care “may assist patients in spiritual concerns (Flannelly et main consistent with their of-life] care options that re recognizing less aggressive [end- PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

136 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-19 CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING is study, the estimated care costs religious/spiritual belie fs” (Balboni et al., 2011, p. 5389). In th in the last week of life for cancer patients who reported high spiritual support were $2,441 less 16 ported less spiritual support. than costs for those who re Finally, in a cohort of 603 advanced cancer pa tients, 188 reported discussing their end-of- life care preferences with their physicians (Zhang et al., 2009). Costs of care in the last week of the care discussion, amounting to savings of life were 36 percent lower among patients who had $1,041 per patient in 2008 dollars. ADVANCE CARE PLANNING AND TR EATMENT PREFERENCES AMONG SPECIFIC POPULATION GROUPS This section describes what is known a bout advance care planning and treatment disability state, religious ecific groups described by age, preferences among people in sp at all of these groups include affiliation, ethnicity, and literacy le vel. An important caveat is th individuals with a full range of generalities that may be derived attitudes and preferences, and the c patient and family. Chapter 1 of this from population studies may not appl y at all to a specifi report notes the importance of pa tient-centered care for people near ing the end of life; the wide variation in preferences that ex ists in any group reinforces the need for end-of-life care that approaches each individual and family as unique. Children and the Elderly Children nning in adult populations— The typical barriers to c onducting advance care pla reluctance to discuss dying, cult ural norms that support family-l evel decisions, clinician time constraints, unpredictable diseas e trajectories, and insufficient clinician preparation to conduct 17 such discussions—also are presen t when the patient is a child. In addition, the process is made s cognitive and emotional development and both more difficult by concerns regarding the child’ ss to participate in such conv the child’s and parents’ readine ersations; the emotional burden on parents and caregivers; differe nces in understanding of prognosis between clinician and expectations among parents; and the need for a three-way conversation child/parent; unrealistic and communication among parents, children, an d clinicians (Durall et al., 2012). Nonetheless, advance care planning models su itable for children and adolescents have been developed. Even suitable adult advance di rectives have been us ed successfully with ounseling (such as Gunders en Health System’s younger people. When combined with in-depth c is chapter), they have greatly increased the Respecting Choices model, discussed later in th proportion of adolescent patients who give their fam ilies the leeway to “do what is best at the e patient and family and improved patient time,” increased information available to th decisions, and increased patient and family agreement about understanding about end-of-life decisions to limit treatmen t (Lyon et al., 2009, 2013). 16 nce directives and advance tial confounders such as adva These findings were adjusted to take into account poten care planning. 17 The term “child” here encompasses adolescents. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

137 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-20 DYING IN AMERICA I am a pediatrician, specializing in care of children living with HIV. Discussions regarding end-of-life care of children are always difficult. Many family members (and health professionals) shy away from the issue. Speaking directly with the child or adolescen t is both extremely important and extremely difficult. Spiritual care is often neglected, as it is kept separate from medical discussions. There is great need to treat the child as a child—a complex, multi-faceted individual—and not as an impersonal medical case. Children hav e much greater insight into thei r own conditions and realities than ould be heart-breaking. However, end-of-life care they are given credit. The death of a child is and sh should not be treated as a taboo subject, especially when speaking directly with the child/adolescent. ren come from strong, supportive relationships with health care Successes in end-of-life care for child providers, counselors, spiritual leaders, and family members. ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. 18 nontechnical language, includes an advance directive written in Five Wishes, identification of a health care agent, as well as choices about medical and nonmedical treatment and comfort. Wish 5—“what I want my loved one s to know”—lets patients describe how they want to be remembered and in a group of a dolescents and young adults, was deemed the most 8). Five Wishes is available in child and helpful part of the document (Wiener et al., 200 (Wiener et al., 2012). adolescent/young adult versions Available guidelines for making end-of-life tr eatment decisions for pediatric patients tend to fully establish their usefulne ss in clinical settings (Hinds to be broad, and research has yet stall the death of a te et al., 2010). Making decisions that will not fore rminally ill child and at will end his or her life “ar e startling concepts,” say Hinds involving the child in the decision th and colleagues (2010, p. 1049). From these authors’ vantage point of working in pediatric oncology, enabling a peaceful death is part of pr oviding care of the highest quality. The way to parents’ decisions “can color all of their these decisions are made and a respectful reaction preceding treatment-related interactions, and may influence how well parents emotionally survive the dying and death of thei r child” (Hinds et al., 2010, p. 1049). The capacity or incapacity of children to par ticipate in end-of-lif e decision making cannot nds et al., 2010). This at each decision point (Hi be assumed and must be individually determined cases by age 6, and depends in part on children’s capacity begins at least by age 10 and in some own appraisal of their health and well-being. Because of their experi ences, many children are perceptive judges of the balance between the burdens and benefits of treatment. Even children aged 5-6 can be capable of remark ably insightful abstract leaps and often express their views in drawings and stories, for example. Few studies of pediatric adva nce care planning have been conducted, and those generally have involved small numbers of patients and fa milies. A recent review found three reports of fically for children, all in the United States systematic advance care planning programs speci 19 am models had similar overall designs, they Although the three progr (Lotz et al., 2013). directive used. These icipants, and advance differed in care setting, target population, part and parents’ initiati programs increased completion of advance directives on of discussions about increasing use of the programs over time. treatment, and both patients and physicians made 18 http://www.agingwithdignity.org/five-wishes.php. 19 They are the FACE Intervention (Lyon et al., 2009), the Footprints Model (Toce and Collins, 2003), and mes et al., 2005). Respecting Choices (Ham PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

138 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-21 The importance of involving children in thes e discussions is illustrated by research among 24 pairs of adolescents with AIDS and th eir family decision makers, which found that family members did not recognize when their chil d wanted to have an end-of-life conversation (Garvie et al., 2012). The great majo rity of the adolescents (90 percent) wanted to talk about end- of-life issues before entering the dying phase , including 48 percent who thought the best timing for end-of-life decisions was befo re getting sick and another 24 percent who wanted to have s trajectory: before getting si ck, when first diagnosed, when conversations throughout the illnes luctant to have end-o f-life discussions when first sick, and when dying. While parents may be re their child’s health is relatively stable (Edwards et al., 2012), most clinicians (71 percent in the advance care planning discussions Durall et al. [2012] study) believe often happen too late in the course of disease. Anticipatory guidance and re flection on the goals of ca re during times of both stability and worsening illness are useful (Edwards et al., 2012). Families are more likely to take advantage of palliative care options when they a nd the care team recognize earlier in th e clinical g suffering (Wolfe et al., 2000). listic and focus instead on reducin course that a cure is unrea r that parents of children who will not survive From the sparse research available, it is clea need time for making decisions a death. Understanding parents’ nd preparing for their child’s r their children necessitates consideration of the reason, end-of-life decision making fo understanding, emotion they bring their roles as parents and as to their responsibilities and decision makers (Bluebond-Langner et al., 2007). Factors that help parents improve their decision-making capability are opport unities to make decisions that accord with the family’s traditions and values, clear and complete understanding of the child’s condition, and reinforce parents’ competence opportunities within each clinical encounter to build trust and (Hinds et al., 2010; Lannen et al., 2010). In sum, believing “they have acted as ‘good parents’ in tional recovery from the dying and such a situation is likely to be very important to their emo death of their child” (Hinds et al., 2010, p. 1058). The Elderly who are younger to have thought about their Older Americans are more likely than those Pew Research Center, end-of-life preferences or completed an advan ce directive (CHCF, 2012; any kind of consideration of end-of-life care 2013; Tompson et al., 2013). The higher rate of reflects age-related increases in the prevalence of chronic illnesses, dementia, other cognitive 20 the proportion of people with one or impairments, frailty, and di sability. In one large study, more disabilities increased from 28 percent 2 years before death to more than half (56 percent) in the last month of life (Smith et al., 2013a). In one study of more than 5,000 65-year-old individuals, most were able to articulate fe-extending treatment if their preferences for end-of-life care, and most sa id they would reject li itive impairment or severe physical pain (Carr they had a terminal illness involving either cogn and Moorman, 2009). That these survey respondents avoid life-sustaining were more likely to pain may indicate the in the case of physical treatments in the case of cognitive impairment than wever, found that while pain experiences. A separate study, ho relative importance of these important attribute among both patients and physicians, mental control was ranked as the most physicians than among patients (Steinhauser awareness was ranked lower in importance among 20 In this study of 8,232 people over age 50 who died while enrolled in the Health and Retirement Study between 1995 and 2010, disability was defined as needing help with at least one of the following activities of daily living: dressing, bathing, eating, getting in or out of bed, walking across the room, and using the toilet. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

139 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-22 DYING IN AMERICA et al., 2000a). “This discrepancy between what patients value and what physicians rate as e patient’s family to select) important could lead physicians to advocate for (or encourage th treatments that do not mesh with the patient’s preferences ” (Carr and Moorman, 2009, p. 769). Infrequently considered is that an older person’s net financial worth is positively associated with participating in any type of advance care planning, regardless of demographic, health, and psychological character istics. People with higher inco mes are more likely to engage 21 in estate and financial planning, cludes or otherwise may trigger an activity that frequently in some aspects of health-related planning, such as establishing a durable power of attorney for health care (Carr, 2012b). Differences across Disability Groups People with Cognitive Impairments dual patient has the cognitive Determining whether an indivi capacity to participate meaningfully in decisions about end-of-life treatments is a challenge to clinicians, and “physicians regularly fail to recognize in capacity” (Sessums et al., 2011, p. 420). Such a determination is especially challenging when it involves people who live in community group ), especially if they have no (rather than in state institutions homes and other community settings s further emerge because of a “lack of clear family, guardian, or health care agent. Challenge s protecting these individuals wh en institutionalized that do standards and regulatory guideline nt, ‘least-restrictive’ not transfer to the more independe atized group homes” environments of priv (Artnak, 2008, p. 240). Determining capacity generally requires tests of whether patients can understand, retain, and use information about proposed treatment in the decision-making process; appreciate the significance of the decision and use reason in ma king it; and communicate their choice (Sessums et al., 2011; Raymont et al., 2004). Capacity is task specific. People who lack the decision- sions—especially high-risk or exceedingly making capacity to make certain medical deci complex ones—may nevertheless retain the capac ity to make simpler decisions and even to capacity are not standardized, choose a health care agent they tr ust. However, determinations of ssessing capacity exist, and although many different instruments for a their precision and 22 suitability for different clinical settings vary considerably. In some situations, physicians may rely heav ily on the views of family members as well as their own knowledge of the fragile health of their patients with intellectual disabilities (Wagemans et al., 2013). Clear communication —verbal and nonverbal—and efforts to avoid linicians serving such possible misunderstandings by using language free of jargon are vital for c patients (Tuffrey-Wijne and McEnhill, 2008). ons for their institutionalized A study of factors influencing parents’ resuscitation decisi children with severe developmental disabilities f ound that a concerted effort to explain treatment options and end-of-life issues resulted in some families’ making a change from full-resuscitation 21 ur analyses that saving money, in its An intriguing recent report found in fo elf, is a buffer against anxiety about d protecting people from existential fears (Zaleskiewicz death by providing a sense of control over one’s fate an et al., 2013). 22 Sessums and colleagues (2011) recommend three capacity-assessing instruments suitable for use in a physician the Hopkins Competency Assessment Test (HCAT), and office visit: the Aid to Capacity Evaluation (ACE), nts have robust likelihood ratios (sensitivity/specificity) Understanding Treatment Disclosure (UTD). These instrume and moderate to strong levels of evidence. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

140 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI 3-23 ON AND ADVANCE CARE PLANNING to do-not-resuscitate status (Fri edman and Gilmore, 2007). Family members, religious leaders, and discussions with physicians had the greatest influence on those who chose full resuscitation. e or discomfort did not appear to affect the Families’ perceptions of the child’s quality of lif decision. Homeless or “Unbefriended” Patients “Unbefriended” patients who have neither decision-making capacity nor a surrogate decision maker are at particular risk of not having their wish es known or followed. Physicians patients, with the Veterans ce on how to handle the care of such and institutions need clear guidan iled and transparent process ...[being] a model for other Health Administration’s “deta institutions” (Berlinger et al., 2013, p. 51). That policy describes a collaborative approach that involves the hospital’s senior l eadership and guides professionals on how to collaborate with nted guardian is needed. legal counsel if a court-appoi Homeless people might be assumed to be a quintessential “unbefriended” population, with high rates of cognitive challenges due in part to underlying mental health problems, substance abuse, and isolation (Karp and W ood, 2003). A test of whether homeless people can and will complete a counseling session on advance care planning and an advance directive was al., 2010). More than a quarter of the subjects completed an conducted in Minneapolis (Song et letion (38 percent) bei ng seen among those who advance directive, with a higher rate of comp ird of the group had someone (often a family received guidance from a counselor. About a th member) whom they wanted to make decisions about their care in specific clinical situations. Having a single health professional make uni lateral decisions for an unbefriended patient ng patient autonomy and establishing transparency. is ethically unsatisfactory in terms of protecti Equally troublesome is “waiting until the patien t’s medical condition worsens into an emergency plied” (Berlinger et al., 2013, p. 51), so that consent to treat is im which compromises patient care and prevents any thorough and thoug htful consideration of patient pr eferences or best interests. People with Physical Disabilities r others’) capacity to adapt to a disability People are not well able to foresee their own (o of quality of life, a fundamentally subjective (Stein, 2003), which means that others’ assessments people with disabilities. The “paradox” of judgment, are not necessarily in accord with those of high perceived quality of life desp ite serious and persistent disa bilities has been acknowledged for some time (King et al., 2012; Albrecht and Devlieger, 1999). People with severe neuromuscular diseases, such as Duchenne’s muscular dystrophy or not necessarily well served by a amyotrophic lateral sclerosis, are dvance directive language that refers to “extreme disability” as a reason to withho ld or withdraw treatment because of the lack of context provided (Stein, 2003). The core defi nition of quality of life for many people with disabilities is “living well,” a nd the underlying factors contributi ng to living well are consistent lf (that is, able to continue across disabilities: health status , social connectedness, being onese financial security (Murphy et al., 2009). The doing things important to the person), and life often is ignored bilities nearing the end of possibility of quality of life for people with disa ith people with disabilities and their lives may (Gill, 2010). Even health care providers familiar w According to disabil ity rights advocate Diane hold negative views about their quality of life. “Unfortunately, the disability community...has Coleman in testimony provided to the committee, ealth care providers, devaluation luation by physicians and other h a lot of experience with deva -sustaining treatment” (Coleman, 2013). that leads to pressure to forego life PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

141 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-24 DYING IN AMERICA levance and suitability of advance care One approach suggested to improve the re planning to people with disabilitie s is to reconsider including disa bling conditions as a reason for limiting treatment in living wills and make greater efforts to help health care agents understand the complex choices involved when a medical c ondition or injury might lead to substantial disability (Stein, 2003). Differences among Religious Groups The majority of patients at the end of thei r lives find religion to be important; however, these needs are supported only minimally or not at all by the current health care system (Balboni et al., 2007). Research has documented a str ong role of religious affiliation, although not necessarily denominational affiliation, in both advance care planning and the nature of treatment white, non-Hispanic individuals aged preferences at the end of life. In a large survey of mostly 64-65, those from traditionally de (categorized as conservative, moderate, fined religious groups or liberal Protestant; Catholic; other; and no religion) had sim ilar treatment preferences given e majority of people in all relig ious subcategories “would reject two end-of-life scenarios, and th ess” (Sharp et al., 2012, p. 288). life-sustaining treatments if faced with an incurable terminal illn 23 However, people holding fundamentalist views, regardless of denomination, were significantly than their nonfundamentalist counterparts, even more likely to want life-sustaining treatments after controlling for sociodemogr aphic factors and health status . Two specific attitudes accounted for this difference: fundamentalists were less li kely to believe that qua lity of life is more important than just staying alive and more likely to say that their religious or spiritual beliefs would guide their medical decisions. Similarly, in another study, conservative Protestants and d a lower likelihood of engaging in those attributing great importance to religion/spirituality ha advance care planning (Garrido et control of life’s length and al., 2013). Beliefs about God's adherence to values supporting the use of all available treatments were the main factors religiosity and a dvance care planning. accounting for the relationships between both treatment choices and how those choices Additional spiritual beliefs that influence are made relate to the origin of illness and well-rooted confidence that miracle cures can occur or plan for end-of-life care” (Johnson et al., 2008, p. that “those who believe in God do not have to 1956; Balboni et al., 2013). For instance, in a pr ospective, multicenter co hort study, researchers found that positive religious coping (constructiv e reliance on faith, e.g., through seeking God’s intensive life-prolonging me dical care near the end love and care) was associated with receipt of s remained a strong predictor tive religious coping among patient of life (Phelps et al., 2009). Posi of intensive life-prolonging care despite statistically accounting for known demographic (age and , including patients’ acknowledgment of terminal illness and race) and psychosocial confounders completion of advance directives. Thus the choi ce of life-prolonging therapies near the end of r belief in God’s divine healing or hope for a life among “religious copers” may be driven by thei miraculous cure through intensive medical care. ligiosity/spirituality ong interaction between re The research literature also identifies a str 05; Winter et al., 2007; Buck and c group membership (Johnson et al., 20 and certain racial/ethni ch Religion and Public Life Project (reported Meghani, 2012). Recent data from the Pew Resear in more detail in Chapter 6) reveal that most white mainline Protestants (72 percent), white 23 the two statements: (1) the Bible is God’s word and Defined as “agreeing or agreeing strongly with both of d (2) the Bible is the answer to all important human everything happened or will happen exactly as it says an problems” (Sharp et al., 2012, p. 283). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

142 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-25 62 percent) would stop medical Catholics (65 percent), and wh ite evangelical Protestants ( treatment if they had an incura ble disease and were suffering a great deal of pain. Most black Protestants (61 percent) and Hi spanic Catholics (57 percent), by contrast, would tell their earch Center, 2013). physician to “do everything possible to save their lives” (Pew Res Despite this well-documented relationship between race/ethnicity and preference for intensive life-sustaining treatment at the end-of-l ife, mechanisms explaining this relationship are e, single-site study with a pr edominantly African American not fully understood. In a larg sample, those who were highly religious and/or sp iritual were more likely to have a designated es et al., 2012). In this study, religious decision maker for end-of-life decisions (Karch characteristics were not signi ficantly associated with the likelihood of having an advance directive or do-not-resuscitate or der. In another study, the effect of race on end-of-life decisions was only partially mediated by a measure of gui dance by God’s will (Winter et al., 2007). The ucts not pertaining to authors conclude that other dimensions of spir ituality or unique constr spirituality and religiosity may operate simultaneously in explaining end-of-life preferences among racial subgroups. Thus, pathways to the us e of intensive measures to extend life are multifactorial and may go beyond religious beliefs (see the following subsection). 24 Differences across Racial, Et hnic, and Cultural Groups Patients’ backgrounds, culture, et eir perceptions about life, hnicity, and race influence th illness, suffering, dying, and death and the meaning they ascribe to these events. These perceptions in turn affect pref erences for the kinds of care peopl e want, how much they want to hoices, whether and how they want to make treatment choices, know about their situation and c whom they want to make those choices if they cannot, and the role of the family in the entire process (Blank, 2011; Kagawa-Sin ger and Blackhall, 2001). In the coming years, rapid growth in the pr oportion of U.S. elderly that are members of icians to communicate more effectively with racial/ethnic minority groups will challenge clin people of many cultural traditions. Between 2010 and 2030, the U.S. white, non-Hispanic increase by 59 percent, whereas the minority population aged 65 and older is expected to 160 percent (Greenberg, 2011). It is vital, population of the same age group will increase by therefore, that clinicians be rception among racial, ethnic, and aware of common differences in pe cultural groups so that at the very least, th ey can ask the right probi ng questions and have a tanding of patients and their families. firmer basis for individualized unders As noted above, although there are many diff erences among individual perspectives and actions within groups, the general pattern in minority populations is one of a lack of advance nsive treatments; poorer communication with care planning and a preference for more inte nts and families may not follow clinicians’ advice clinicians is part of this pattern. Although patie lihood of poor end-of- on increases the like and recommendations, “avoiding such communicati life decision making” (Curtis and Engelberg, 2011, p. 283). In many cultures, collective family decision making—and even sometimes the paternalistic decisions of the family patriarch— is considered as important or more so than nce to the collective wisdom of the family patient autonomy (Blank, 2011). Having made refere in every other aspect of their lives to that point, dying individuals cannot realistically be expected to name a single health care agent. In a to make decisions completely on their own or 24 The terms used to describe population groups in this sectio n vary and are generally those used by the authors cited. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

143 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-26 DYING IN AMERICA presentation to the committee, Rebecca Dresser, a member of the President’s Council on at bioethics has had an unin tended and at times negative Bioethics (2002-2009), suggested th consequence by focusing on autonomy and ignor ing guidance and suppor t (Dresser, 2013). The fact that racial and ethnic minority i ndividuals are less likely to use advance udies in different population directives or choose hospice care has been noted in numerous st groups (Waite et al., 2013; Zaide et al., 2013; Mu ni et al., 2011; Ko and Berkman, 2010; Ko and ohnson et al., 2008). At the same time, many authors have found Lee, 2013; Phipps et al., 2003; J associations between minority race or ethnicity and the receipt of more intensive end-of-life care d Mitchell, 2009; Barnato et al., 2007). This (see, for example, Muni et al., 2011; Mitchell an pattern may result from a lack of informa tion about advance planning documents and hospice (Wicher and Meeker, 2012) or from lower levels of general or health lite racy (Volandes et al., 2008b). However, Volandes and colleagues (2008a) warn that “while attention to patients’ culture is important, it is also important to avoi d ascribing choices to culture that may actually on” (p. 700). Despite the often hi gh-pressure, complex situations reflect inadequate comprehensi in which end-of-life decisions must be made , clinicians cannot make assumptions about preferences or take communica izing the quality of care. tion shortcuts without jeopard The available body of evidence suggests that multiple factors are at work in forming ng those preferences into care (see Table 3-3). As patient and family preferences and in translati race/ethnicity can be thought of as a proxy for Ko and Lee (2013, p. 6) state, “Taken together, personal, cultural, and social c ontexts, so that an individual’ s values, beliefs, and personal e care planning].” circumstances are necessary for [understandi ng] his or her [advanc TABLE 3-3 Summary of Patient and Family Factors in End-of-Life Decision Making among Individuals of Different Races, Ethnicities, and Cultures Factor Selected Source(s) A combination of beliefs, preferences, and values Johnson et al., 2008 Spiritual beliefs Wicher and Meeker, 2012 Knowledge about advance directives Wicher and Meeker, 2012 Historical mistrust of the health care system Kagawa-Singer and Blackhall, 2001; Wicher and Meeker, 2012 Cultural beliefs about family involvement Blank, 2011; Kagawa-Singer and Blackhall, 2001; Ko and Berkman, 2010; Yennurajalingam et al., 2013a,b Desire to avoid emotional distress for self or family by West and Hollis, 2012 discussing death, fear, denial “Don’t want to think about dying” or family already aware of Carr, 2012a care preferences Muni et al., 2011; Phipps et al., Disagreement between patient and family preferences for treatment 2003 Patients and physicians each wa iting for the other to initiate Phipps et al., 2003 the discussion Extent to which family engages in estate planning Carr, 2011, 2012b PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

144 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-27 CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING Waite et al., 2013 Literacy level Socioeconomic status* Carr, 2012b were found after controlling for socioeconomic *Although racial/ethnic differences in ICU care status, once a patient is in the ICU, socioeconomic status may not make a difference (Muni et al., 2011). is seen among black, Hispanic, and Asian A relative lack of advance care planning e settings, including hospitals patients across socioeconomic groups. It is seen as well across car and nursing homes and even in inte nsive care, where patients are leas t likely to be able to make their own decisions and the need for such planning is greatest (Frahm et al., 2012; Muni et al., , which are generally accepted in western 2011; Reynolds et al., 2008). “Advance directives civilization, hold little and minority ethnic] population” (Cox or no relevance within the [black which family decision making predominates et al., 2006, p. 20), including Asian cultures, in (Blank, 2011), and American Indian cultures, whic h hold different views from those typical of tonomy and informed consent (Colclough and the white, non-Hispanic population regarding au Brown, 2013). Asians Whereas one U.S. study of patients with head and neck cancers found that more than 81 percent did not want anyone el se present at the time of di agnosis (Kim and Alvi, 1999), e Japanese are more likely to want a relative patients from family-centered cultures such as th i and Uchitomi, 2009). A revi ew of the literature present for such difficult conversations (Fujimor general may be less likely th indicates that Asian patients in an patients of other cultural backgrounds to want an estimate of life expectancy and more likely to have family present when 2009). In a separate study of more than 500 receiving bad news (Fujimori and Uchitomi, s (2007) found that married patients, those with Japanese cancer patients, Fujimori and colleague tion preferred to discuss life less helplessness/hopelessness, and those with more formal educa of these patients preferred to have their physician explain the expectancy. Still, the majority status of their illness, break bad news honestly and in a way that is easy to understand, and explain the treatment plan. African Americans As noted, African Americans are less likel y than white non-Hispanics to express any treatment wishes or to have written advance ca re planning documents. Compared with whites, they also are more likely to report inadequate or problematic communication with physicians erns about staying informed about the illness, (Trice and Prigerson, 2009), to have greater conc ceived a lower rating (Welch et al., 2005). In and to give the care their family member re response, some efforts have been made to care fully tailor the messages regarding advance care planning to African American (as well as othe r cultural) communities. One example is the called “What Y’all Gon’ Do With Me? The comprehensive approach of Gloria Anderson ide to End of Life Care” (Anderson, 2006). African-American Spiritual and Ethical Gu es found lower rates of hospice use and A study involving New York State nursing hom among blacks than whites: 40 percent of black patients and 24 higher rates of in-hospital deaths fferential accounted for largely by a higher use of percent of white patients died in hospitals, a di ze orders among African itate and do-not-hospitali feeding tubes and a lower use of do-not-resusc American patients (Zheng et al., 2011). Overall, according to the authors (p. 996), “Other PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

145 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-28 DYING IN AMERICA conditions being equal, residents from facilities with higher concentrations of blacks have higher risk of in-hospital death and lower probability of using hospice.” Further examination is needed and type of nursing home, and especially how of why differentials in use occur by diagnosis these differentials may affect quality of care and outcomes. Some evidence suggests that the gap between Af rican American and white patients in the use of hospice has been shrinking. Between 1992 and 2000, the hospice use rate for whites st four-fold (Han et al., 2006). Differences by doubled and for African Americans increased almo race and ethnicity still are seen, however (Tab le 3-4). Blacks are underrepresented in the proportion of deaths that occur in hospice, which least in part, to the has been attributed, at rollees give up curative efforts (Wicher and Medicare Hospice Benefit’s requirement that en Meeker, 2012). TABLE 3-4 Race and Ethnicity of U.S. Decedents and Hospice Patients, 2011 Asian, Hawaiian, White, non- African Multiracial Other Pacific American, non- Hispanic Hispanic Hispanic (%) (%) (%) (%) Islander (%) 10.9 Race and ethnicity of U.S. N/A 5.5 2.1 80.9 decedents aged 35 and a over (2011, preliminary) b 82.8 Race and ethnicity of U.S. 8.5 2.4 6.1 6.2 hospice patients (2011) a were aged 35 and older in 2011. Fully 99 percent of hospice patients b The National Hospice and Palliative Care Organizatio n (NHPCO) reports Hispanic ethnicity separately from race. SOURCE: Hoyert and Xu, 2012; NHPCO, 2013. rican Americans in medical research, dating The well-documented historical abuse of Af throughout the health care enterprise in many parts back more than 150 years, continues to ripple of the United States. The au thor of the award-winning book Medical Apartheid says people tried to discourage her from writing the book, claimi ng that “...any acknowledgment of abuse will drive African Americans from sorely needed medi cal care. However, a steady course of lies and this” (Washington, 2006, pp. 386-387). This history and profound exploitation has already done lack of trust may be one reas er intensive life-sustaining on why African Americans may pref treatment near the end of life and believe that advance care planning and hospice may deny them wanted services (West and Hollis, 2012; Johnson et al., 2011; Lepore et al., 2011; Johnson et al., 2008). n skills contribute to this lack of trust Some believe that poor physician communicatio er, the issue on which ent relationships, howev (Gordon et al., 2006). In a study of physician-pati in closest agreement was whether they had African American and white respondents were s rated all other measures of ian; African American respondent complete trust in their physic respondents (Smith et al., 2007). lower compared with white relationship quality significantly Hispanics/Latinos ons, less research has been done among Compared with other minority populati d decision making. The available studies suggest, Hispanics/Latinos on end-of-life preferences an however, that they follow the general patt ern seen among cultural and ethnic minority PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

146 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-29 CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING populations as previously described (Carr, 2012a ). Extent of knowledge about and attitudes toward advance directives are st rong predictors of whether such directives are completed among both Hispanics and whites, and disp arities in rates of completion may be due to differences in these factors (Ko and Lee, 2013). Greater accultu ration was found to increase the likelihood of having an advance directive among ol der Latinos (Kelley et al., 2010). Interviews with 147 Latinos aged 60 and ol der from Los Angeles-area senior centers found that most (84 percent) would prefer care fo nd discomfort if they cused on relieving pain a became seriously ill, yet nearly half (47 percen t) had never discussed these preferences with either their family or their physicians (Kelle y et al., 2010). Interviewe es expressed a strong preference for family involvement in decision maki ng about end-of-life care , whether or not they were incapacitated. In another st udy, 71 percent of hospitalized La tinos had not had a discussion about advance directives with cl inical personnel (Fischer et al., 2012). Latinos who had had such a discussion were just as lik members to have an advance ely as any other population group directive on file, suggesting that the primary ba rrier to overcome is the low rate of such discussions. System Factors in Decision Making Mack and colleagues (2010a, p. 1537) conclude that in the health care “wider issues with identified...White patients may have greater system...could explain the major disparity we continuity of providers and sites of care, with the confirmation of [do-not-resuscitate] orders and documentation of preferences, for example, at ever y encounter. Alternativ ely, racial bias on the part of health care providers about patie nt preferences could have a role.” Several potential system barri ers to advance care planni ng and completion of advance directives have been identified. For example, docto rs’ belief that African American patients “are more likely to prefer intensive, life-sustaining treatment” (Bar nato et al., 2011, p. 1663) may lead to an overestimation of an African American i ndividual’s preference for such treatment. This may be one reason black patients tend to receive life-extending measures even when they have stated a preference for symptom-directed care nd why the hospital care (Mack et al., 2010a) a they receive is more likely to involve in tensive services (Barnato et al., 2006, 2007). rectives, the advance Some patients may simply need more inform ation about advance di care planning process, and hospice and palliative care options (Zaide et al., 2013; Johnson et al., 2008; Wicher and Meeker, 2012). As a practical matter, health care providers need to be sure that the relevant discussions with all patients, regardless of race, ethnicity, language, and health literacy level, are unhurried, culturally appr opriate, free of confusing medical terms and concepts, and adequately underst ood by the patient and family. Physicians can be part of that most appropriate person to lead a lengthy discussion, but may not in all cases be the vigators or other trained laypersons may be conversation; bicultural and bilingual patient na helpful in talking to patients and their families about advance care planning. Materials in low-literacy populations may also improve languages other than English and designed for ce care planning (Fischer et al., 2012). knowledge, understanding, and rates of advan Differences across Literacy Levels “the degree to which literacy—defined as Levels of both general literacy and health basic health information and to obtain, process, and understand individuals have the capacity PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

147 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-30 DYING IN AMERICA services needed to make appropriate health decisions” (Ratzan and Parker, 2000, p. vi)—affect engagement in advance care planning a nd the preparation of advance directives. General Literacy Most advance directives (w hich often contain comple x legal constructions and ures) require at least a twelfth-grade reading descriptions of medical technologies and proced level (Castillo et al., 2011). The 2003 National Assessment of Adult Literacy found that 14 der have below-basic prose literacy, and adults percent of the total U.S. population aged 16 and ol 65 and older account for more than a quarter of these individuals (Baer et al., 2009). And while ty level accounted for adults with income below 125 percent of the pover 24 percent of the adult population in 2003, they represente d 56 percent of those with below-basic prose literacy. ion will decline as a Predictions are that th e general English liter acy of the U.S. populat graduation rates; continued low result of several factors, in cluding continued low high school reading and math performance among U.S. school children, particularly blacks and Hispanics; h et al., 2007; Parker and the increasing number of immigrants (Kirsc et al., 2008). In 2011, almost 61 million U.S. residents aged 5 and older spoke a language other than English at home, and 7 percent of those residents—4.3 million pe ople—spoke English “not at all.” For 38 million Americans, the language spoken at home is Spanish, and for 23 million more, it is something se, Korean, and German each being spoken by else—with Chinese, French, Tagalog, Vietname more than a million people (Ryan, 2013). Health Literacy According to a IOM (2004) report, approximately 90 million people have low health literacy. As a result, they would be likely to have significant di fficulty navigating the health care system and/or completing a range of tasks ke y to self-managing complex chronic conditions successfully. In general, people with low health literacy experience mo re hospitalizations, use more emergency care, and are less able to in terpret medication labels and health messages appropriately than those with hi erkman et al., 2011). Low-literacy seniors gher health literacy (B -literate counterparts. Such difficulties are likely have poorer health status than their more health to escalate near the end of life. Health literacy “is not simply the ability to read. It requ ires a complex group of reading, to apply these skills to health listening, analytical, and d ecision-making skills, and the ability ured and highly correlated health literacy situations” (NNLM, 2013). Frequently meas components are “the ability to interpret documents , read and write prose (print literacy), use quantitative information (numeracy), and speak a nd listen effectively (oral literacy)” (Berkman assessed. Numeracy skills are et al., 2011, p. ES-1), with oral literacy being less frequently especially important in understanding prognoses , risks of treatment, and the expression of clinical uncertainty. Adult Literacy assessed the health literacy of U.S. The 2003 National Assessment of adults using multiple measures. The test content encompassed clinical and prevention topics, as well as navigation of the health care system (Kut lts (all statistically ner et al., 2006). Key resu rror those for ge neral literacy: significant at the .05 level) mi percent of U.S. adults was basic or below and was The health literacy of 36 • “proficient” for only 12 percent. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

148 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-31 White (non-Hispanic) and Asian/Pacific Isla • nder adults had higher average health literacy than other groups. an younger adults, and • Those aged 65 and older had lower averag e health literacy th r had below-basic health literacy. 29 percent of adults aged 65 and olde Low health literacy affects certain population subgroups disproportionately: people of sabilities, those with lower socioeconomic status, racial and ethnic minor ities, people with di psychiatric and other cognitive disorders, and th e elderly. Nevertheless, “people of all ages, races, incomes, and education levels—not just pe ople with limited reading skills or people for whom English is a second language—are aff ected by limited health literacy” (ODPHP, 2010, p. 4). utilization, outcomes, Multiple studies have shown that health liter acy affects health care and costs (Berkman et al., 2011). Individuals wi th low health literacy whose difficulties are of an advanced disease may have difficulty compounded by the emotional stress and debilitation reading, comprehending, and/or signing insurance forms or co mplicated advance directive documents. In one study of almost 800 patients aged 55 to 74, almost half of those with adequate of those with marginal literacy, literacy, just over a quarter and only an eighth of those with low literacy reported having an adva nce directive (Waite et al., 2013). Uncertainties about care preferences among less hea itive decision- lth-literate groups suggest a need fo r culturally sens al., 2010). account (Sudore et making tools that take literacy into ELEMENTS OF GOOD COMMUNICATION IN ADVANCE CARE PLANNING Elements of good communication in advance care planning include open, clear, and d patient; good communication with families and respectful communication between clinician an sion making and patient-centered care. health care agents; and shared deci Clinician-Patient Communication Open, clear, and respectful communication betw een health care professional and patient is a precondition for effective advance care pla nning. It also is critical to developing a therapeutic relationship and ne tment plan. Moreover, it is gotiating and carrying out a trea professionally rewarding and personally satisfy ing for clinicians, a nd reduces anxiety and uncertainty for patients (Dias et al., 2003). monograph on improving patient-centered A National Cancer Institute (NCI) communication is organized around six major goals: • fostering healing relationships, exchanging information, • • responding to emotions, managing uncertainty, • making decisions, and • enabling patient self-management (Epstein and Street, 2007). • PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

149 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-32 DYING IN AMERICA Several of these goals are major topics in this repo rt and in this chapter in particular. Authors of the NCI monograph point out the interrelationshi ps among these goals and the variability in information about each of them. After-death interviews with 205 families of adult decedents included several questions related to advance care planni ng. Although total “quality of dyi ng and death scores” were not directive, “higher scores were associated with influenced by whether the patient had an advance communication about treatment preferences, complia nce with treatment pref erences, and family tion with the health care team” (Curtis et al., 2002, p. 17). satisfaction regarding communica Specific components of communication associ ated with a better- quality dying experience 25 included how well the health care team listened to the family and explained the patient’s condition “in language they can und erstand and in terms that are meaningful in their lives” (Curtis et al., 2002, p. 27). While in-the-moment decision making may pr ovide the most accurate reflection of patients’ wishes at the time a decision is neede d, this approach entails numerous barriers. For a decision—medical, psycho example, considering all the implications of logical, logistical, r patients and health ca re agents under such financial, caregiving—may be nearly impossible fo not want to think about these i circumstances; many of them may ssues and the current trajectory of a serious advanced illness, and clinicians ma y not have the time to discuss them. Nevertheless, clinicians—especially those who do not have a lengthy previous relationship with the patient— need this input. According to Sudore and Fried (2010, p. 257), what matters most to patients “is the about the outcomes they most hope for or fear potential outcomes of treatment.” Asking patients is a way to identify values and preferences in a way that may be more actionable than asking whether they want or do not want specific interventions. And because opinions change over time, discussions of this type need to be repeated. Good questions include “What information would you like to know?,” “Who else should be given the information and be involved in decision presented?” (Russell an d Ward, 2011). A review making?,” and “How should that information be 26 of the international literature suggests that cancer patients’ info rmation preferences are affected of communicating bad news, what and how much information is by four factors: setting, manner provided, and emotional support (Fujimori and Uchitomi, 2009). Despite the importance of good clinician-pa tient communication, many impediments to such communication exist. Some are inherent in the previously disc ussed issues concerning ns themselves, includi specific populations. Others relate to physicia ng a lack of training, insufficient time, competing needs, and personal discomfort in discussing terminal prognoses and death. Walling and colleagues (2008) identify the following reasons for a lack of the effective clinician-patient communication needed for advance care planning: with doctors’ physiological responses to reluctance to give patients bad news, • breaking bad news showing that it is stressful for them to do so; • physicians’ avoidance of discussions of negative prognoses because of some wanting to enge nder hopelessness; combination of uncertainty and not 25 to patients about advance directives, they spent two-thirds Previous research indicated that when physicians talked of the time talking; discussed attitudes toward uncertainty only 55 percent of the time; and asked about patients’ 34 percent of the time (Tulsky et al., 1998). values, goals, and reasons for treatment preferences 26 rs was conducted by investigators in Japan, but they note This systematic review of English-language research pape that most of the research they found report ed on experiences in Western countries. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

150 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING CLINICIAN-PATIENT COMMUNICATI 3-33 • lack of evidence about the best timing for di scussions of future treatment options and the above-noted changing concerns of patie nts over the course of illness that may warrant repeat discussions; • reluctance on the part of patients to discuss these matters; and • time constraints and distracti ons (pagers, for example). “There is too little time during our appointments to discuss everything we should” was the most planning mentioned by almost two-thirds of 56 physicians common barrier to advance care responding to one survey, with wanting to maintain patients’ hope being the next most frequently cited (by 23 percent) (K nauft et al., 2005). Lack of time to identify patients’ preferen misunderstandings if ces can contribute to doctors rely instead on their own instincts and ex perience. Two studies found that even specially trained palliative care physicians who had had le ngthy initial consultations with their patients most commonly assessed the patients’ medical d ecision-making preferences (how actively they sions) incorrectly (Bru era et al., 2001, 2002). wanted to participate in making treatment deci at exemplify the challenges of end-of-life The following sections look at four topics th communications: discussing prognosis, handling emo tional encounters, nurturing patients’ hope, and addressing spirituality and religion. Discussing Prognosis Shortcomings in existing prognostic tools and methods contribute to a lack of clarity ians and clouds communication (Smith et al., about disease prognosis that weighs on physic tes of the course of disease do not exclude 2013b; see also Chapter 2). Population-based estima the possibility that an individual pa tient will be an exception at th e short or long tail of longevity. Not only is estimating prognosis difficult, but so, too, as noted above, is the process of and Christakis, 2003). Nu merous studies have communicating it to patients and families (Lamont shown that to compensate, physicians tend to prov ide prognosis estimates infrequently or to give overly optimistic estimates of survival. Th e more long-standing th e physician-patient relationship, the more likely it is that the physician will make an inaccurate, overpessimistic rising, then, that interviews prediction of prognosis (Christakis and Lamont, 2000). It is not surp with terminally ill patients and their caregive rs reveal considerable uncertainty about life few weeks of death (F ried et al., 2006). expectancy among both groups, even within a A study involving palliative care specialists f ound that almost all of their consultations (93 percent) included some prognostic informati on and more pessimistic than optimistic cues, d on the situation of the gave greater emphasis to quality of life than to length of survival, focuse particular patient rather than population-based estimates as the patient neared death, and tended to provide more pessimistic views when talking to family members without the patient present (perhaps because the patient was too ill to participate) (Gramling et al., 2013). Often family members and health care ag ents do not understand, ha ve not been made serious prognosis (see also aware of, or cannot accept their loved one’s the discussion of good communication with families and he alth care agents below). Both patients and family members al., 2003) and tend to t prognosis (Fried et frequently “don’t hear” negative messages abou ally—not because physicia ns are unclear or interpret even negative information optimistic of psychological factors and l risk information, but because families do not understand numerica inking (Zier et al., 2012; Wachterm belief in the power of positive th an et al., 2013). On the other PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

151 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-34 DYING IN AMERICA hand, even a single pessimistic statement from an oncologist can reduce patients’ unchecked optimism (Robinson et al., 2008). Bringing physician and patient vi ews into greater alignment is necessary to give patients the best opportunity to make realistic and inform ed choices about their care. One strategy is to make clear that the plan of treatment may go we ll, but that it may not effect a cure of the ents in fewer than half of patient visits underlying disease. Oncologists make such statem (46 percent) (Robinson et al., 2008 ), and even so, patients ofte n do not understand them (Weeks et al., 2012). Handling Emotional Encounters Patients living with advanced serious illnesse s experience significant distress, and their need to make difficult decisions about treatment contributes to this suffering. These treatment decisions can be fraught with uncertainty and of ten are clouded by a fear of death. Such distress is known to be highly prevalent among cancer patients in particul ar, with up to 60 percent of difficulties (Carlson et al., 2010, 2012; Zabora selected populations acknowledging emotional distress, including managing et al., 2001; Gao et al., 2010). Many factors contribute to this physical symptoms, adjusting to changes in soci s, and navigating the al or occupational role nd progression (Anderson et al., 2008). In emotional ups and downs of cancer remission a addition, most patients face multiple decisions about treatment throughout the course of their illness. These decisions vary from discrete choice s about surgery to more general decisions about philosophies of treatment and balances between risk and reward. Much of the research on clinician manage ment of emotional encounters comes from inicians do not consistently handle patients’ and studies of cancer patients, and it has found that cl families’ expressions of emotions well (Loewens tein, 2005; Pollak et al., 2007). In fact, research to patients’ expressed emotions are relatively suggests that empathetic responses by physicians rare, despite physicians’ high confidence in being able to address patients’ concerns and the frequency with which such concerns are expre ssed. Analysis of audiotapes from almost 400 27 revealed that conversations between oncologists and 270 patients with advanced cancer opportunities for the oncologists to show empathy arose in patients’ remarks some 292 times in remarks were direct (e.g., “I 2007). Some 68 percent of these 398 conversations (Pollak et al., have been really depressed lately”), and a .g., “Oh, no. What do we do third were indirect (e now?”). broad categories of issues: Emotions can arise in patie nts in response to several symptoms, diagnosis, and treatment; social issu es; the health care system, and death and dying (Anderson et al., 2008). Common words used to e xpress such emotion ar e “concern,” “scared,” “worried,” “depressed,” and “nervous,” which woul d appear to be patently emotion laden. Yet patients’ expressions of emoti on, patients eventually cease to “when clinicians repeatedly miss express emotion,” and an important opportunity to ss is foregone (Anderson relieve patient distre et al., 2008, p. 808). with statements or clinicians can respond In these situations, questions that are “continuers” (those that name the patient’s em otion, express understanding, show respect or otion further) or with “terminators ” (statements that seek to cut support, or seek to explore the em ogists responded with (2007) found that oncol off the discussion). Pollak and colleagues 27 Most of these 270 patients had at least a 6-month relationship with their oncologist. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

152 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-35 terminators 73 percent of the time. Patients learn not to raise these issues when met with such responses (see also Butow et al., 2002). Gender is a predictor of the use of more empathetic language, with women using more such language. In addition, the extent to dentified as more which oncologists self-i socioemotional than technical-scientific in their or ientation also predicted the use of empathetic ion, a survey of oncologists (48), oncology language (Pollak et al., 2007). In this connect physician assistants (26), and oncology nurse s (22) found that most of the physicians (70 percent) described themselves as “technologi cal and scientific,” while substantial majorities of the nurses (82 percent) and physician assistants (68 percent) described themselves as “social e nurses and physician assistants also reported and emotional” (Morgan et al., 2010). Because th more comfort with psychosocial ta lk, the authors of this study s uggest that the differences across ould have important implications for the design professions in responding to patient emotion “c well as for health professions education. of future oncology care teams” (p. 16), as the more challenging tasks of the already Dealing with patients’ emotions is one of kely to die. Care and support for the clinicians who do this difficult job of caring for people li ontribution to improving nd make an important c work may reduce clinician stress and burnout a the care they provide (Mack and Smith, 2012). Nurturing Patients’ Hope As suggested above, a primary reason physicia ns are not more candid about discussing iscussing end-of-life care will take away the patient’s hope,” prognosis is that they believe “d al., 2007, p. 5647). However, research suggests which might affect treatment outcomes (Ganti et milies of hope or lead to depression, and that that honest conversations do not rob patients and fa being truthful does not hasten death (Shockney and Back, 2013) . By adopting a communication approach that simultaneously emphasizes “hopin g for the best and preparing for the worst,” doctors allow for important opportunities to lear n from patients and families what they need, what they fear, and what is possible (Back et al., 2003, p. 439). candor do exist. Certai Ways to encourage hope in a context of greater nly, clinicians can and symptoms, providing emphasize what can be done (managing pain emotional support and e realistic goals of care; and ding practical assistance); explor care, maintaining dignity, and provi discuss the priorities for day-to . The importance of the latter -day living (Clayton et al., 2005) topic is suggested by research s howing that patients a nd caregivers are some times reluctant to discuss the future because they are so focu sed on the here and now (Knauft et al., 2005). Addressing Spirituality and Religion Attention to patients’ spiritual needs can improve the quality of communication among clinicians, patients, and families and reduce the gap between the health care patients want and om numerous studies indicate dwards et al., 2010). Findings fr expect and what they receive (E that some patients feel that a lack of spirit nt communication gap (e.g., ual support is an importa iritual support believe that sp et al., 2004). Many clinicians, too, Peteet and Balboni, 2013; Curtis rrell, 2010). These findings parallel the goals of is an important aspect of care (Puchalski and Fe ntion to body, mind, and spirit, an d of patient-centeredness, which palliative care, with its atte veness to the needs, values, and expressed encompasses “compassion, empathy, and responsi physician and ethicist Daniel patient” (IOM, 2001, p. 48). As preferences of the individual Sulmasy (2009, p. 1635) puts it: PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

153 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-36 DYING IN AMERICA onals have sworn to treat patients to ...if physicians and other healthcare professi and the best care treats patients as whole the best of their ability and judgment, y that ignores the fundamental meaning persons, then to treat patients in a wa ng, life, and death is to treat patients that the patient sees in suffering, heali superficially and to fall short of the best ability and judgment. A final general consideration is that, alt hough spirituality and religion may be powerful duals, this does not mean physicians should forces for relief of suffering for certain indivi encourage patients toward religious practices “as something ‘medically indicated’ for health” (Sulmasy, 2009, p. 1636). The healing benefits of spiritual practice may not be achievable through external exhortation in any case, and ma y be possible only when they form part of a person’s intrinsic belief system. Good Communication with Fam ilies and Health Care Agents Family involvement is an essential feature of advance care planning, and the family’s se can help reinforce—or understanding of the illness and its treatment and likely cour undermine—the work of the care team. In unexp a sudden devastating ected situations, when illness or injury occurs, the same need for careful communication and family involvement occurs. These situations are made more difficult by the likelihood that no prior relationships exist on requires redirecting the patient’s conditi among patient, family, and clinicians and when t to palliative care (Limehouse et al., 2012a,b). When there is efforts from resuscitative treatmen conflict within the family, moreover, a health care agent is less likely to make decisions in agreement with the patient’s wishes (Parks et al., 2011). Much experience with communication in family meetings has been gained in the long- term care setting. There, individuals may expe rience significant mental as well as physical ngs are an important component of care. Family declines during their residence, and family meeti en they occur at times other than crises and meetings have been found to be most successful wh support decision making , establish goals, and are used to share information, manage emotions -established guidelines exist (Ceronsky and Weissman, 2011). Well for conducting such meetings effectively, and opportunities fo r improving family meetings th rough cross-learning across care er et al., 2013). In the intensive care setting, settings may be useful (Hudson et al., 2008; McCusk conferences in which family members are given share their concerns opportunities to speak and reduce conflict with the doctor ove r care decisions and family dissa tisfaction with the process of 28 making those decisions (McDonagh et al., 2004). Physicians have avoided such conversa tions for various reasons—perhaps an unwillingness to reveal the limits of medical knowle dge; a desire to avoid causing patients and , concern about causing a loss of hope. Avoiding families undue distress; or, as discussed above these conversations may be misguided, however, as it denies families and health care agents the and logistically for their l oved one’s death (Apatira et al., opportunity to prepare emotionally 2008; Evans et al., 2009, p. 52). 28 In this study, audiotapes of 51 family conferences, involving 214 family members and led by 36 different physicians, were made and analyzed. On average, c linicians spoke more than 70 percent of the time. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

154 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-37 CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING My father had progressive bladder cancer and also was an Alzheimer’s patient who lived at home with our mother. As our father's disease progressed, both hi s physical and mental health deteriorated. Our mother also passed away quite unexp ectedly, so his care was completely transferred to my sister and me. We became frustrated by the lack of communication be tween the doctor's office and us. It did not appear the treatments our father was receiving were working, and he had difficulty understanding why he had to go to the doctor’s for a treatment that caused immediate pain and then prolonged discomfort. Phone calls, faxes, and e mails were not answered. We found the only way we could obtain information or ‐ answers to questions was to physically enter the docto r’s office and request a face-to-face meeting. Since I lived five hours away, it was necessary to schedule the meetings during my half of the week at our father’s home. The doctor even scheduled a su rgery for our father near the end of his life. ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. Families’ and health care agents’ perceptions of prognosis may be affected by patients’ physical appearance, how they have handled previ ous illnesses, their strengths, and their will to ents’ own optimism, intuition, and faith. Thus, live, as well as by the family members’ and ag s with the information provided by the clinician. families attempt to meld and balance these factor For example, as Boyd and colleagues (2010, p. 1274) note, “discussing prognosis in terms of outcomes of populations of ‘similar’ patients may fa ll short if physicians do not also recognize and appreciate that surrogates also view uni patient as relevant.” que attributes of the Interviews with 179 health care agents for ICU patients at an academic medical center revealed that most (87 percent) wanted physic certain prognosis, and only ians to discuss an un a discussion in case the prognosis was incorrect (Evans et al., 12 percent preferred to avoid such is despite uncertainty 2009). Health care agents wanted to discuss prognos because they believed uncertainty is unavoidable. They also felt that discussing uncertainty leav es room for realistic looked for hope elsewhere) and that physicians rather than false hope (some noting that they tion. Sharing information were the best and only source for this informa during such discussions increases trust in the physician. In addition, having this information allows health care agents to her family members, gives them time prepare to make difficult better support the patient and ot good-bye and prepare for possible bereavement life support decisions, and allows time to say (Apatira et al., 2008; Evans et al ., 2009). Rather than avoiding di scussion of the likelihood of to practice “complete hone death, some health care agents want physicians sty,” although there is a range of receptivity to this in formation (Evans et al., 2009). Conversations involving withdr awal of life support are inevitably difficu lt for all parties. are divided as to whether they want the physician to make a Health care agents themselves of 169 agents, 56 percent preferred to receive recommendation in such situations. In one study to (2 percent had no preference) (White the physician’s recommendation, while 42 preferred not care agents’ demographic characteristics. s not related to health et al., 2009). This differential wa physicians should not routinely provide These findings suggested to the authors that g life support and instead be flex ible in their approach to recommendations about withdrawin ation whether such advice is ituations, taking into consider advising surrogates in such s “to ensure that decisions reflect the patient’s appropriate, desired by the surrogate, and necessary values and preferences” (White et al., 2009, p. 324). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

155 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 3-38 Shared Decision Making and Patient-Centered Care Increasingly, informing and invol ecisions about their care is ving patients regarding the d recognized as a standard for good care (Fowler et al., 2013). This evolution in thinking has respect to patient-clinician communication around care decisions occurred in recent decades with ontext of advance care pl anning. “Shared decision broadly and is particularly relevant in the c making emerged as a compromise in the longstand ing debate about the re lative role of patient ecision-making” (Stark and Fins, 2013, p. 13). autonomy and provider beneficence in medical d In May 2013, an editorial in the British Medical Journal called for an equal-footing partnership between patients and doctors. The edit orial also acknowledged that “achieving such a partnership is a challenge. Year s of paternalism have left doctors and patients unprepared for a 29 different type of interaction” (Godlee, 2013, p. 1). Shared decision making is neither clearly nor consistently defined in the research literature, and more robust res earch methods are needed to ga uge its effects more precisely (Lipkin, 2013). Nonetheless, it cl early shares characteristics and a development path with the notion of patient-centered care. Indeed, shared decision making is one aspect of patient- centeredness, an essential component of quality care. Shared decision making encompasses • e patient’s perspective; eliciting and understanding th • social and emotional context; understanding the patient’s psycho developing a shared understanding of the clinical problem and its appropriate • treatment, given the patient’s goa ls, preferences, and values; and • empowerment, which is achieved through ac tive involvement of patients in decision making (LeBlanc and Tulsky, in press). For patients with advanced serious illnesses, shared decision making is intended to create a context in which future decisions can be made th at remain true to patients’ preferences. This box-style advance dir ectives, and emphasizes approach eschews the idea of specific, check- participation by patients and, importantly, their fam ilies, as well as their health care agents (who ion is strongly endorsed by current practice. may be family members), whose thoughtful select and patients with adva nced illness, many of According to Gillick (2013, p. 575), “For frail elders whom have multiple chronic diseases, patient- centered care is impossi ble without caregiver le of caregivers deserves cons involvement...[and]...the critical ro iderably more attention from clinicians.” A narrative synthesis of some 37 articles on shared decision making in palliative care identifies several important themes (Bélange r et al., 2010). Although patients prefer shared decision making (preferred by 40-73 percent of patients surveyed in five studies) and it is important to them, they often are not afforded the chance to participate. In addition, the effects of nd depression, patient satisfaction, and life participation on patient outcomes (anxiety a acilitators of shared decision making have both barriers to and f expectancy) are not yet clear, and ilies’ unrealistic expectations of treatment; the been identified. Barriers include patients’ and fam way options are framed for patien predetermined patterns of care; ts; delaying decisions to follow en a decision is needed, all the information is and providing information too gradually so that wh 29 have been collected British Medical Journal A number of articles on the topic of shared decision making from the at http://www.bmj.com/bmj-serie s/shared-decision-making. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

156 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI 3-39 ON AND ADVANCE CARE PLANNING not in hand. Facilitators include clinicians providing sufficient, realistic information; presenting choices; and using tools to aid patients in decision making. How Patients Make Decisions ation that people, once presented with Advance care planning is founded on the expect evidence and facts, will make rational choices ba sed on well-established views and preferences (Swindell et al., 2011). The growing field of behavioral economics is challenging both the notion ce of “well-established views. ” Clinicians assisting patients of “rational choice” and the presen benefit from understanding of bi ases and “rules of thumb” by which patients make decisions (Swindell et al., 2010). Examples of these decisi on-making methods as they might emerge in end-of-life situ ations include • being unduly influenced by a memorable event (such as news reports of the extremely rare cases in which someone in a coma for many years “miraculously” returns to consciousness); • believing that some exceptional factor will prevent a patient’s disease from following its usual course; being influenced by unrelated past occu rrences (such as a relative’s successful • recovery from a serious disease or difficult, painful death); and • declining opioid drugs preferring inaction to avoid harm (such as early in the illness em”), even though this inaction may cause so that “they will work when I need th greater harm than action. Such biases and heuristics can unintentionally thwart what patients themselves see as windell et al., 2010). Clinicians who understand the ways in which their best interest and goals (S patients’ decision making is not al ways rational can help patients re flect on their biases and to see if doing so changes their expressed pref erences (Halpern, 2012a; Swindell et al., 2011). Insights into the psyc hology of human decision making can be used “to develop, test, and implement scalable interventions that improve the quality of the health decisions made by alpern, 2012b, p. 2789). “Choice architecture” takes patients, family members, and providers” (H in which decisions are made,” e presented and the environment into account the ways “choices ar adjusting them so that better deci sions result (Halpern, 2012b, p. 2789). Gaps between people’s intentions and their be havior are a prominent theme in the end-of- the gap between people believing in the importance of advance life field. A prime example is directives and discussions about end-of-life wi shes and their taking action in accordance with that belief (CHCF, 2012; The Conversation Projec t, 2013). Certainly patients have been shown to vary a great deal in the extent to which they want to be involved in decisions about their end- ssible to encourage and support good decision making without of-life care, and it may be po relying on unrealistic expectati ons about patient engagement. Choice architecture employs a number of key stra tegies designed to improve the decision environment, including use of defaults and precommitment (Nease et al., 2013). The precommitment approach takes into account that most people place a higher value on present or that will occur in the future . Advance care planning is an imminent events than on events diate costs (contemplation of one’s mortality and example of an action that has fairly steep imme and benefits that may appear only theoretical. the possibility of being unable to make decisions) eoretical those benefits may seem. Default or The younger and healthier the person is, the more th PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

157 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-40 DYING IN AMERICA want to make a different a provisional decision; if they “opt-out” choices assign patients 30 All default options in th e health care system (for decision, they can, but must actively do so. stated otherwise) carry biases. Choice architecture seeks to make example, aggressive care unless age changing the default to on that is generally these biases explicit and, in some cases, encour preferred by patients and clinicians. By doing so, biases that currently drive decisions may be undone and enhance patient choice. According to Halpern and colleagues (2013, p. 412), “A hallmark of defaults is that they lead gentl y, without restricting any options.” A randomized study of patients with incurable tients were presented with an lung cancer found that when the pa e care, they were significantly more likely to advance directive in which the default was palliativ elect that option than were patients given a stan dard advance directive or one that defaulted to life-extending treatment (Halpe rn, 2012b; Halpern et al., 201 3). In studies in which a ustaining interventions as the default, many hypothetical advance directive used forgoing life-s more study participants indicated that this was their preference th an was the case if they had to actively choose that option (Kressel a nd Chapman, 2007; Kressel et al., 2007). The important implication of the research by Kressel and colleagues is that “people might e at the end of life will best not have well-formulated, strongly held views on what forms of car promote their values” (Halpern et al., 2013, p. 409). Rather than reflecting deeply ingrained preferences, their responses to ces may be constructed at the advance directive document choi what has been observed time they are asked to provide them, similar to with respect to other al., 2007). This hypothesis was tested with 132 patients having health care choices (Halpern et incurable lung disease and no prio r directive (Halpern et al., 2013). Patients were randomly assigned to be presented with one of three advance directives that differed only in their embedded default options. While most of the pa tients chose what the authors called comfort- oriented care, the proportion making that choi ce was much higher in the group receiving the “comfort default” directive. When, subsequent ly, the study design was explained to patients along with the data showing how defaults had a ffected the choices of the patient groups, only 2.1 percent of partic ipants reconsidered their selections, and no patients revised their original ructured that make changes to the way a choices. This result suggests that dvance directives are st st patients prefer (alw it simple for patients to choose the kind of care mo ays with the option to choose otherwise) might “provide a novel way to improve end-of- life care for large populations of seriously ill patients” (Halpern et al., 2013, p. 414). Decision Aids veloped to guide discussion, support patients, and make Decision aids have been de 31 Recognizing that patients near ing the end of life are likely discussion of difficult issues easier. attempt to make their completion to be in a state of decline, th e designers of these aids generally as low-burden as possible. Many of these tools have been tested and used in the palliative care apply to a single decision, such as whether to setting or with cancer patients, and many of them ognitively impaired patient. place a feeding tube in a c 30 An early successful application of “opt-out” decision making was designed to encourage people to participate in an employer-subsidized 401(k) savings plan. Automatically enrolling employees unless they actively opted out high level of employee satisfaction” (Nease et al., 2013, “materially increase[d] participation while maintaining a p. 245). 31 n to identify patients for a sufficient screening questio For example, the question “Are you at peace?” may be rvices are needed (Ste whom fuller spiritual assessment or specialized se inhauser et al., 2006). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

158 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING 3-41 CLINICIAN-PATIENT COMMUNICATI Even an apparently simple open-ended questi your understanding of on such as “What is your illness?”—certainly fundamental to a discussion of choi ces—can have significant clinical utility. A study of patient responses to this que stion found substantial differences among patient groups: 77 percent of patients with cancer could name or describe their condition, sometimes using precise biomedical terms; 39 percent of patients with congestive heart failure and 41 percent with chronic obstr uctive pulmonary disease could do so; and some patients (particularly those with limited education) ha their illness (Morris et al., d little knowledge or understanding of efore, signal the opportuni ty for clinicians to 2012). Patients’ responses to this question may, ther provide more information about the illness, di scuss how it may affect the patients’ lives, and describe its likely course, as well as reveal whether patients have unmet emotional needs. those used in face-to-face encounters; those Decision aids are of three general types: designed for use outside c linical encounters (take-home materi als, for example); and those that use some intervening medium, such as telephone or video (Elwyn et al., 2010). Results of randomized trials of video decision aids, reporte d in Table 3-5, show that across the board, participants were comfortable with the decision aids and found them useful. According to the often underestimate the em otional resilience of authors of one of these studies, “Physicians (El-Jawahri et al., 2010, decision-making process” patients and their desire to be involved in this p. 309). TABLE 3-5 Care Decisions among Selected Audiences Effects of Video Materials on Health Result Audience Video Content Proportion choosing comfort General population over Patient with advanced dementia age 40 care* increased from 50% to (Deep et al., 2010) 89% 80% of viewers chose comfort Patients in skilled nursing Goals of care (life-prolonging, facilities care,* compared with 57% in basic, or comfort care*) control group (Volandes et al., 2012a) People with advanced 91% of viewers chose comfort Goals of care (El-Jawahri et al., cancer care,* compared with 22% in 2010) control group 20% of viewers wanted CPR, People with advanced Cardiopulmonary resuscitation compared with 48% in control cancer (CPR) (Volandes et al., 2013) group People with pancreatic or 40% of viewers had their CPR (Epstein et al., 2013) hepatobiliary cancer advance care plans documented 1 month after the intervention, compared with 15% in control group; viewers’ preferences for CPR changed significantly postintervention, with 24% no longer wanting CPR Goals of care (Volandes et al., Statistically significant People with advanced decreases in proportion who 2012b) cancer wanted CPR or ventilation PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

159 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-42 DYING IN AMERICA *The phrase “comfort care” was used by the au thors and described as care that maximizes comfort and alleviates pain or suffering. A research team at the forefront of devel oping and evaluating decisi on aids defines them as follows: Decision support interventions help people think about choices they face: they describe where and why choice exists; th ey provide information about options, tion. These interventions including, where reasonable, the option of taking no ac help people to deliberate, ation with others, about independently or in collabor options, by considering relevant attribut es; they support people to forecast how they might feel about short, intermed iate and long-term outcomes which have relevant consequences, in ways whic h help the process of constructing preferences and eventual decision making, a ppropriate to their i ndividual situation (Elwyn et al., 2010, p. 705). Video is not the only effective medium fo r decision aids. In another recent study involving 120 patients with metastatic cancer who were no longer receiving curative therapy (55 intervention patients, 65 control patients), the intervention gro up received a pamphlet (“Living a psychologist about preferences and values with Advanced Cancer”) and a discussion with ing the intervention had do-not-re suscitate orders placed earlier (Stein et al., 2013). Those receiv and were less likely to die in the hospital than patients in the control group. Previous research stress; with the addition of the mphlet alone caused patients di had indicated that providing the pa , no negative impact on patie nts or caregivers was found. discussion with a psychologist The timing of the use of decision aids also is important. By the time a patient is admitted cant decisions may have to a hospital palliative care unit, for example, many of the most signifi eoccupied to participate been made, or patients may be too sick or pr (Matlock et al., 2011). MODEL ADVANCE CARE PLANNING INITIATIVES The National Quality Forum’s National Framewor k and Preferred Practices for Palliative advance care planning d practices related to and Hospice Care Quality includes seven preferre ised in this chapter, and many build on positive (NQF, 2006). They reflect many of the issues ra d the effectiveness of atives that have improve experiences with model advance care planning initi the process or its reach in the populati on. The seven practices are as follows: maker in accordance with state law for • Document the designated surrogate/decision every patient in primary, acute, and long-term care and in palliative and hospice care. • Document the patient/surrogate preferences for goals of care, treatment options, and as conditions change. setting of care at first assessment and at frequent intervals Convert the patient treatment goals into • medical orders, and ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services [EMS], and hospital care, through a program such ustaining Treatment (POLST) program. as the Physician Orders for Life-S • across care settings, signations available Make advance directives and surrogacy de while protecting patient priv Insurance Portability and acy and adherence to Health PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

160 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-43 tions, for example, by using Internet- Accountability Act (HIPAA) of 1996 regula c personal heal th records. based registries or electroni Develop health care and community collabo • rations to promote advance care planning and the completion of advance directives for all individuals, for example, the Respecting Choices and Community C onversations on Compassionate Care programs. ees or ethics consultation across care • Establish or have access to ethics committ settings to address ethical c onflicts at the end of life. • For minors with decision-making capacit y, document the children’s views and preferences for medical care, including assent for treatment, and give them appropriate weight in deci sion making. Make appropriate professional staff members available to both the child and the ad ult decision maker for consultation and intervention when the child’s wishes differ from those of the adult decision maker (NQF, 2006, pp. 42-45). advance care planning that have occurred These standards reflect several innovations in Approaching Death since innovations overcome some of the (IOM, 1997) was published. These difficulties experienced with conven to timing, relevance, lack of tional advance directives related support, and unavailability when needed. Physician Orders for Life-Sustaining Treatment nce care planning desi The POLST paradigm is an approach to adva gned to ensure that tments they want or do not want and that their seriously ill or frail patients can choose the trea wishes are documented and will be honored in an emergency (National POLST, 2012a). POLST is a clinical process designed to facilitate communication between health care professionals and patients, their families, their health care agen ts, or their designated surrogates. The process encourages shared, informed medical decision making. The result is a set of portable medical orders, POLST forms, that respects the patient’ s goals for care with regard to the use of ministered nutrition; and other medical cardiopulmonary resuscitation; artificially ad interventions, such as int on (Bomba et al., 2012; National ubation and future hospitalizati nerally are described as “Comfort Measures POLST, 2012a). Medical intervention options ge tions,” and “Full Treatment” a Only,” “Limited Additional Interven e intensity of nd align with th y” indicates that the primary goal for care is the desired interventions. “Comfort measures onl maximizing comfort. If comfort needs cannot be met in the patient’s location, the patient is transported to a clinical care setting where t hose needs can be met. “Comfort measures” are ary goal of relieving pain and other symptoms medical care and treatment provided with the prim and reducing suffering, and may include offering f ood and fluids by mouth; turning the patient in suctioning, and other manual treatment of bed; providing wound care; and providing oxygen, airway obstruction for comfort. “Limited addi tional interventions” includes comfort measures , such as administration of an plus some medical interventions tibiotics and intravenous fluids. egories, as well as use of es provided in the other two cat “Full treatment” includes measur 32 additional medical interventions, such as intubation or mechanical ventilation. 32 form; therefore, the forms veloping that state’s POLST Each state POLST paradigm program is responsible for de ble at http://www.polst.org/educational- Forms from various states are availa vary from state to state. resources/resource-library/. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

161 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-44 DYING IN AMERICA These medical orders suppor t the person’s preferences w ith respect to treatment, preferred site for receiving care, and death, and can be reviewed and revised as needed (Bomba et al., 2012; National POLST, 2012a). They are intende d to stay with patients near the end of life as they are transferred from home to hospital or a ny other type of care facility and to be in force wherever patients may be. POLST are followed in all care settings and by all health care professionals, including emergency medical serv ices personnel, who in an emergency, cannot health care agent (Bomba et al., 2012; National interpret a living will or take orders from a POLST, 2012b,c). POLST are not intended for everyone; they are for people with serious illnesses or frailty whose health care professionals would not be surpri sed if they died within the next year, based on their current health status and prognosis. POLS T also are appropriate for patients who reside in a long-term care facility or receive long-term se rvices at home as a result of frailty, and for persons of advanced age who want to avoid or receive any or all lif e-sustaining treatment. Among vulnerable populations, including persons with disabilities, POLST are intended only for seriously ill or frail patients facing end of life, not the entire population (Bomba et al., 2012; National POLST, 2012a). The POLST process begins with the clinicia n’s preparing for the discussion by first re that POLST are appropriate ealth status and prognosis to ensu reviewing the patient’s current h entails retrieving a for that patient. The second step nd reviewing completed advance directives and prior do-not-resuscitate and/ ining the patient’s capacity to or POLST forms; the third, determ make POLST decisions; and the fourth, edu cating the decision maker about POLST. A conversation or series of conversations between th e patient and trained clinicians helps define the at will drive the choice of interventions. The patient’s values, beliefs, and goals for care th discussion can occur in all clinic al care settings, in cluding the physician’s office, the long-term patient’s home. If the patient lack care facility, the hospital, or the s the capacity to make medical decisions outlined on the POLST form, discussion occurs with the health care agent or the appropriate surrogate, identifie d under state law. The clinic ian reviews possible treatment options on the entire POLST form and ensures shared, informed medical decision making. The n, as it represents a ; in some states, set of medical orders POLST form is signed by the physicia rm. The conversation also should be documented nurse practitioners are authorized to sign the fo in the patient’s medical record (Bomba et al., 2012). ght, neon color so it is difficult to overlook The POLST form typically is printed in a bri on the patient’s home refrigerator or in an inches -thick medical chart. It is written in plain language, avoiding both medical a nd legal jargon, and intended to be based on conversations among the clinician, the patient, and the health ca re agent (Bomba et al., 2012; National POLST, 2012d). The physician (or nurse practitione r, if state scope-of-practi ce regulations allow) should review the POLST form periodically as require d by law, and also if e setting or care level to another, the patient is transferred from one car • there is a substantial change in the patient’s • health status (for better or worse), or • the patient or other decision maker changes his or her mind about treatment. ported by the American at their use is sup The advantages of POLST forms are such th ce and Palliative Care Organization, and other Hospital Association, AARP, the National Hospi ored by Excellus BlueCross and BlueShield in groups. At the community level, a project spons PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

162 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING CLINICIAN-PATIENT COMMUNICATI 3-45 Upstate New York has worked to educate the community about that state’s POLST program (called Medical Orders for Life-Sustaining Treatment [MOLST]) (Compassion and Support, 2014a). The project has engaged employers, insure d members, and clinicians in efforts to increase advance care planning and adherence to patients’ informed preferences (see also Chapter 6). The POLST form is neither an advance directive nor a replacement for advance directives advance directives and the POLST form are (Bomba et al., 2012; National POLST, 2012e). Both unicating patient wishes when appropriately helpful advance care planning documents for comm used. As discussed in this chapter, one of the principal problems with th e “living will” type of at it may have been completed wh advance directive is th en a person was in relatively good health. At that point, it is almo st impossible for people to predic t the kind of care they would Another problem is that clinicians often are want in some future, more compromised state. dvance directive and do not always unaware of the existence of the a follow it if they are, if only because they believe patients’ former wishes are not relevant in their cu rrent situation. Finally, advance directives often do not accompany patients as they transfer between care settings. The POLST form is designed to overcome these limitati the POLST form and ons. Salient features of the ways in which it differs from advance directives are summarized in Table 3-6. Like advance directives, POLST forms allow patients to choose a range of intensities of care, from comfort measures only to full treatment, and to indicate whether they want emergency medical services personnel to a ttempt resuscitation. In one study of more than 700 patients with POLST in place, 42 percent specified comfort measures only, 47 percent specified limited interventions, and 12 percent specified full treatment (Hickman et al., 2010). Differences between POLST and Advance Directives TABLE 3-6 Advance Directives Characteristics POLST People who are seriously ill Intended for All adults Future care Applies to Current care Health care professionals, based Patients Form completed by on in-depth discussion with their patients Medical orders Resulting form Advance directive Can engage in discussion if Health care agent or Cannot complete surrogate role patient lacks capacity Portability Patient/family responsibility Clinician responsibility Patient/family responsibility Clinician responsibility Periodic review SOURCE: Adapted from Bomba et al., 2012. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

163 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 3-46 Effects of POLST on Patient Care The developers of the POLST paradigm have conducted a number of studies to document its effects. These studies have yielded the following findings: The treatment preferences of nursing home residents without a POLST form were less • cal orders, and their preferen ces for treatment other than likely to be reflected in medi cardiopulmonary resuscitation were less likely to be recorded (Hickman et al., 2010). • easures only orders were less likely to Nursing home residents with POLST comfort m hose with POLST limited treatment or full receive life-prolonging treatments than t treatment orders and those with traditional do-not-resuscitate and traditional full-code orders (Hickman et al., 2010). Having a POLST form made no difference in the amount of symptom care patients • received (Hickman et al., 2010). • Treatments provided to nursi ng home residents were highl y consistent with POLST tions including hospitalization orders for resuscitation ( 98 percent), medical interven (91 percent), and antibiotic administration ss consistent with (93 percent), but le orders regarding use of feeding tubes (64 percent) (Hickman et al., 2011). • r levels of medical treatment received Patients whose POLST orders specified highe that treatment (Hickman et al., 2011; Hammes et al., 2012). POLST orders only rarely (Hammes et al., Care diverged from that specified in • 2012). • Half to three-quarters of patients with a POLST form specifying no resuscitation attempt nevertheless had orders for limited a dditional interventions or full treatment, ons or life-sustaining treatments (Fromme which can include other medical interventi et al., 2012; Hickman et al., 2009). MOLST in all care settings in 2008 after a New York authorized the statewide use of to ensure that emergency medical services successful 3-year community pilot was conducted w do-not-resuscitate and do-not-i personnel could read and follo ntubate orders on the MOLST aining and community ized professional tr form (Compassion and Support, 2008). Standard education materials, policies a nd procedures, and a quality assu rance program were developed. Community-wide quality and implementation data were collected from emergency medical es, enriched housing facilities, hospices, assisted living faciliti services, hospitals, nursing homes, and Program of All-inclusive Care for the Elde rly (PACE) programs in two upstate New York ; Compassion and S upport, undated-b). counties (Caprio and Gillespie, 2008 California authorized the use of POLST in 2009, and efforts have been made to encourage facilities in the state, including nursing homes, to adopt their use. Among 283 respondents to a survey of state nursing homes, 69 percent reported that they had admitted a ., 2012). Overall, 54 percent of nursing home resident who had a POLST form (Wenger et al residents had a POLST form. Fewer than 10 percen t of nursing homes reported any difficulties in following the POLST orders or having emergency personnel follow them; however, problems ith more frequency included that reportedly did arise w es (62 percent of s from other faciliti difficulty in retrieving original POLST form • respondents), PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

164 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-47 CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING • difficulty in getting physicians to complete (38 percent) and sign (34 percent) the forms, • family disagreement with the conten t of the forms (28 percent), and • difficulty in interpreting POLST orders to make treatment decisions (21 percent). Oregon researchers conducted a small survey services personnel to of emergency medical learn the impact of POLST on their work. They found that POLST orders affected both treatment and decisions regarding whether to transport patients to a hos pital (Schmidt et al., 2013). Another recent study of 58,000 decedents in Or egon found that nearly 31 percent had POLST forms entered in Oregon’s POLST registry. Amo ng those whose completed POLST forms stated a preference for comfort measures only (“Patient pr efers no transfer to hos pital for life-sustaining treatments. Transfer if comfort needs cannot be met in current location.” ), that preference was highly likely to be honored (Fromme et al., 2014, p. 2). Only 6.4 percent of these decedents died in a hospital, compared with 34.2 percent of de cedents without a POLST form in the registry. This suggests that such forms can be effective in limiting unwanted life-sustaining treatment. New POLST programs in many states have carried out substantial community efforts are intended to provide education about engagement efforts with diverse audiences. These the program, especially how the POLST form diffe rs from conventional advance directives; to to build momentum for statewide adoption obtain consumer and professional input; and described at www.Comp (examples include the efforts of New York, assionAndSupport.org, and nt of Public Health [2011]). those of the Massachusetts Departme Challenges to POLST Although many states have or are worki ng to implement POLST, opposition to the some cases as a result of confusion between paradigm has emerged in some communities, in POLST and advance directives. For example, disa bility rights advocates successfully lobbied against Connecticut’s effort to enact POLST le gislation in spring 2013 be cause they felt POLST limited rather than expanded patient options (H argrave, 2013). Some Catholic theologians and ve raised objections to POLST organizations, including the Cathol ic Medical Association, also ha ve endorsed them when used (Brugger et al., 2013; Nienstedt et al., 2013), while others ha properly (Catholic Bishops of New York State, 2011). In a letter to the committee, the Catholic e view that portable medical documents such as POLST forms Health Association, which takes th can be useful, emphasized the importance of “atte nding to some of the identified shortcomings i, 2013, p. 2). Their concer and risks of these documents” (Rodgers and Picch ns related to POLST include the following: • The definition of whom POLST is for—The core idea is that POLST are for people the end of life, but deviat ions from that notion have who are seriously ill and near 33 been seen. professionals—People who work with POLST, especially Relevant training of health • eed training in the care facilities, n emergency personnel and staff of long-term rding its use; and other skills, such as POLST process; effective communications rega 33 For example, Delaware’s Division of Public Health asked medical providers to discontinue using the state’s MOLST form until it could be revised because the agency determined it was being used for non-terminally ill patients, which is “beyond the cial Services, 2012). (Delaware Health and So legal parameters set forth in regulation 4304” PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

165 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 3-48 cability of a POLST form in an understanding of the appli a given situation so they do not deny treatment for remediable problems th at are not imminently life-threatening. Potential lack of meaningful conversa tion—Clinicians may simply check off the • necessary conversations with patients boxes on the POLST form without having the and health care agents. In New York State, an eight-step protocol has been developed actions so as to ensure thoughtful MOLST to guide clinician-patient/family inter discussions (Bomba et al., 2012). Significance of the clinician’ s signature—Physicians or othe r clinicians sign the form, • but attest only that the orders are to the best of their knowledge consistent with the patient’s current medical condition and preferen ces, not that they participated in the discussion of the orders. But the POLST fo rm cannot be viewed as “simply another form to be completed by the health care professional, separated from the context of the advance care planning that is essen tial to the POLST paradigm” (Rodgers and Picchi, 2013, p. 2), because physicians are a ccountable for the medical orders in the form when they sign it. Voluntary nature of POLST—Perhaps especia • lly in long-term care facilities and other institutional settings, the funda LST, in whole or in part, mental voluntary nature of PO must be safeguarded, and completion of a be a requirement. POLST form should not Respecting Choices One of the best-known advance directive initiatives is Respecting Choices, a community- wide effort begun in 1991 in LaCrosse, Wisconsin. Initially working with the city’s major health at encouraging people to complete advance systems, the program was aimed not merely directives, although that is a challenging task in itself, but to change the institutional and professional culture and routines to prom ote and respect advance care planning in a comprehensive way (Gundersen Health System, 2014a,b; AHRQ, 2010). The program produces educational materials for patients; trains facilitato rs to discuss end-of-life questions with patients and prepare them for the end of lif tives are available in patients’ e; and ensures that advance direc ect also has adopted the POLST paradigm medical records, now electronically. The proj (Hammes et al., 2012). Each health system promised to • initiate advance care planning for each pati ent long before a medical crisis occurs, skillfully assist each willing patient w • ith an individualized planning process, • ensure that any plans created are clear and complete, • have plans available to the health prof essionals who may participate in decision making when the patient is incapacitated, and lues and preferences of the patient as follow plans appropriately and respect the va • allowed by law and organizational policy (Hammes, 2003, p. 2). quires embedding advance care planning in Making such a program work effectively re professionals to comm the community’s larger health system to enable unicate and collaborate on itoring and feedback loops for quality making improvements, creating ongoing mon and staff training ongoing financial support improvement, and sustaining the effort with tation of the Respecting Choices program, a (Hammes, 2003). Two years after the implemen d a written advance directive, which in study found that among 540 decedents, 85 percent ha PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

166 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-49 almost all cases (95 percent) was found in th e patient’s medical record (Hammes and Rooney, 1998). In general, treatment pref erences captured in the directiv es were followed when end-of- life treatment decisions were ma de. Accomplishing all this require s “nothing less than a cultural shift in the health care sector” (in der Schmitten et al., 2011, p. 8). bes six ways in which this program differs An early review of Respecting Choices descri from conventional advance care planning initiati ves, which help account for its success in rd with patient wishes: achieving care in greater acco ng process, not as an event designed to • It treats advance care planning as an ongoi produce a product. • It shifts the focus of end-of-life deci sion making away from document completion and toward facilitating discussi on of values and preferences. itals and physicians to the community and • It shifts the locus of planning from hosp family. It does not assume the physician is crucial • to the process, but promotes extensive training of nonphysician community volunteers. It refocuses discussion of preferences away from autonomy and toward personal • relationships, for example, by asking the question, “How can you guide your loved ones to make the best decisions for you?”. It works with hospitals and area physician o ffices to ensure that completed advance • directives are available in patients’ charts (Prendergast, 2001, p. N37). The LaCrosse initiative has been used as a model for advance care planning programs for specific settings and populations, such as nursi ng homes (in der Schmitten et al., 2011), and for lnesses, such as heart failure, patients with advanced chronic il who may be experiencing disease complications or frequent hospitalizations (S chellinger et al., 2011; see also Annex 3-1). ral barriers to implementation Respecting Choices leader Bernar d Hammes (2003) describes seve that must be overcome if the program is to be su ccessfully replicated. First is the need to allow sufficient time to train health professionals a nd discussion facilitators. At the time Hammes was r facilitators and had found writing, the program recommende d a 14-hour training program fo efforts to shorten this time unsuccessful. Hammes (2003) also cites as barriers the need to make the necessary system changes that establish a dvance care planning as th e routine way to offer care and the need for funding for the costs of the program. Hammes acknowledges as well that culturally diverse regions of the United States would be a transferring this model to more challenge because a highly diverse population ma kes it more difficult to normalize the advance care planning conversation. In addition, many ol der people are accustomed to thinking of advance directives as “living wills”—a one-time recording of their wishes intended solely to ganic, discussion-based e new program’s more or preserve autonomy. They need to understand th linical situations a approach that evolves over time with c nd health status. Electronic Health Records Electronic storage of advance directives, stat ements of wishes, health care proxies, or ecord or an external t’s electronic health r other relevant materials—either in the patien problems with these documents. An example database—holds promise for solving some current is described in Box 3-3). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

167 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-50 DYING IN AMERICA BOX 3-3 New York State’s eMOLST New York State’s eMOLST program is an example of well-coordinated electronic documentation of advance care choices. eMOLST is a secure web-based application that clinicians can use with patients. The application’s standardized clinical process emphasizes shared, informed decision making in completing the eMOLST form. In addition, a Chart Documentation Form provides details about the eMOLST discussion, including information on patients’ values, beliefs, and goals for care; capacity determination; and the framework for making MOLST decisions, based on who makes the decision and where it is made, in accordance with New York State’s Public Health Law. eMOLST forms are created as pdf documents, which can be printed out for patients to keep and for insertion in paper-based medical records. The forms can also be stored or linked in electronic health records. Thus, the forms and supporting documentation are accessible regardless of whether an electronic health record is in use. In addition, the forms become part of the state’s eMOLST registry, an electronic database that allows for ready round-the-clock availability of eMOLST forms and the detailed Chart Documentation Form. With this system , health care providers, including emergency supporting documentation at any time or personnel, can have access to eMOLST forms and place. SOURCE: Compassion and Support, undated-a, 2013, 2014b. A 2013 telephone survey of New York nursing homes found that almost 58 percent had implemented eMOLST, while 61 percent indicated in terest in the program. A similar survey of d implemented eMOLST, while 44 percent were hospices in the state found that 38 percent ha 34 interested. A similar survey of hospitals is under way. In theory, electronic systems should facilita te finding advance pl anning documents when a standard template, it may be easier to locate the critical decisions must be made. If records use t care preferences are reflected in the medical relevant information to determine whether curren to Wilson and colleagues (2013, p. 1093), record (Yung et al., 2010). According oduction and effective delivery of “Standardization is a fundamental prerequisite for efficient pr onic systems can—although they do not services,” and electr always—achieve standardization. Another potential advantage of havi ng advance directives in electroni c health records is that they can remind clinicians to inquire whether patien ts’ care preferences have changed and whether alth care agent. For example, they wish to update the identity and contact information for their he tive and complete electronic health record Partners Health System has pioneered an innova end-of-life planning (Block, discussion and documentation of module that supports appropriate 2013). The module includes areas for documenting ences for receiving individuals’ prefer their understandin information about their illness, g of their illness, and their goals and fears. institutions are using which clinicians and Some of the other diverse and innovative ways in bed in Table 3-7. planning are descri electronic means to support advance care 34 Personal communication, P. A. Bomba, Community Conversations on Compassionate Care, 2013. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

168 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING CLINICIAN-PATIENT COMMUNICATI 3-51 TABLE 3-7 Selected Examples of the Use of Electr onic Health Records and Other Technologies to Support End-of-Life Planning Example Outcome Given a modest incentive payment and Discharge summary template in the electronic feedback, clinicians recorded this information health record to include care wishes expressed for more than 90% of patients discharged, and health care agent (Lakin et al., 2013) compared with 12% of clinicians not offered these inducements Some models (such as New York’s eMOLST) Various models providing an electronic registry also enable completion of standardized forms for 24-hour access to POLST forms and related that can be integrated into patients’ electronic documents (Zive and Schmidt, 2012) health records A Nevada pilot ended because of low usage Web-based systems for education about end-of- and budget cuts; more than 5,000 accounts life choices, forms and assistance in their were crated for a Texas repository in its first completion, and document storage (Klugman 3 years, and it was appreciated for its “ease of and Usatine, 2012) use” In preliminary stages; a pilot shows the Interactive computer program that helps users clarify values and goals and record care computer program had good reliability in representing patients’ general wishes and preferences (Schubart et al., 2012) preferences Advance directive module in patient portals, In preliminary stages; there is growing interest in and use of portals by patients alongside modules encouraging personal management of health (Bose-Brill and Pressler, 2012) Currently, however, there are some gaps in pr actice. Not all advance directive registries electronic health records have health records. In addition, while are linked to patients’ electronic increased the documentation of advance directiv es, they have resulted in “an increase in tation from labeling errors made in transfer of information inaccurate advance directive documen to the [electronic health record],” and systems ng and electronic health of advance care planni records have not yet been well coordinated (Bos e-Brill and Pressler, 2012, p. 286). For example, l electronic health record system s adopted by U.S. health care EpicCare is one of the principa care planning documents (including living wills, providers. A study of the availability of advance POLST forms, information about health care agents, and do-not-resuscitate orders) was icCare’s ambulatory care electr onic health record system conducted among active patients in Ep (Wilson et al., 2013). The study found that, while 51 pe rcent of those aged 65 and older had such included a scanned document—the only type that a document, only about a third of their records them legally valid. Minority patients were less includes signatures, which are required to make oblems included a lack of standardization in likely to have a scanned document. Additional pr tion is recorded, thwarting easy retrieval, and where in the record advance care planning informa planning documents and their appearance in the a time lag between completion of advance care electronic record. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

169 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-52 DYING IN AMERICA r Economic and Clinical Health (HITECH) Under the Health Information Technology fo 35 Act, Medicare and Medicaid have pr ovided significant financial incentives for hospitals and physicians to engage in “meaningful use” of certi fied electronic health record technology (CMS, hospitals must show they are “meaningfully 2014). To receive these payments, physicians and using” electronic records to achieve certain sp ecific objectives established by the Centers for lated to advance care planning hus far, the data standards re Medicare & Medicaid Services. T have been minimal, applying only to hospital patie nts aged 65 and older, but the evolution of for expansion in various core ar eas, such as patient education meaningful use offers possibilities and patient engagement. As noted earlier in this chapter, the ACA’s meaningful use provisions for electronic health records do not require, and the major commercial electronic health records nce care planning, includi do not provide for, robust documentation of adva ng advance directives, POLST, or information about designation of and contact information for a health care agent. an objective only to “record wh ether a patient 65 years old or Meaningful use stage 2 includes as older has an advance directive” (CMS, 2012c, p. 1) t considered a “core” ; further, this is no objective, and it is rele nd critical access hospitals, not for vant only for eligible hospitals a eligible professionals (CMS, 2012d,e). Final re commendations from the Health Information age 3 maintained this stage 2 objective; Technology Policy Committee for meaningful use st however, the policy committee is no w recommending that it be a core objective for eligible eligible professionals (HHS, 2014) . (See also research needs hospitals and a menu objective for related to electronic hea lth records in Chapter 5, as well as that chapter’s recommendation.) E PLANNING OF ADVANCE CAR A PROPOSED LIFE-CYCLE MODEL onal Framework and Preferred Practices for As reflected in the standards of the Nati ality (NQF, 2006), discussed earl Palliative and Hospice Care Qu ier, good advance care planning s throughout life, roughly appropriate decision point is not a one-time event, but should occur at as detailed below (Benson and Aldrich, 2012; Bo mba, 2005). The following life-cycle model of rds and practices, findings from the extant advance care planning is based on these standa chapter, and the committee’s ex pertise and expert judgment. literature reviewed in this Considering the aspects of advance care pl anning throughout the life-cycle continuum normalizes the process and aims to avoid th e emotional burden sometimes experienced by patients, families, and loved ones who have not adequately prepared for making end-of-life care decisions. This proposed model has implications for quality improvement programs, clinician training, public and patient education, and payment systems. Milestone-Specific Under the life-cycle model proposed by the committee, an initial conversation about ning a driver’s license, values and life goals is held at some key ma turation point—such as obtai the military, or marriage (milestones when risks turning 18, leaving home to go to school or into may change or the locus of responsibility shifts): 35 , Title XIII of Division A and ic and Clinical Health (HITECH) Act Health Information Technology for Econom , Public Law 111-5, 111th American Recovery and Reinvestment Act of 2009 (ARRA) Title IV of Division B of the Cong., 1st sess. (February 17, 2009). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

170 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-53 The presumption is that the person is gene • ally competent, but rally healthy and ment like everyone is at risk for acute illness or injury and sudden (and possibly temporary) loss of capacity to make medical decisions. The purpose of the conversation at this point • is to help normalize the advance care tify a health care agent, and to obtain planning process by starting it early, to iden guidance in the event of a rare catastrophic event. • The consultation might be performed by a tr ained counselor, advanced practice nurse, physician assistant, or social worker. Situation-Specific Additional discussion of values and life goals are held, for example, with people in high- risk occupations; those involved in high-risk activities, including military training or deployment; and those with major genetic or congenital issues: Again, the presumption is that • the person is in good health. The purpose is to ensure that a health care agent has been designated and to take into • consideration any family issues (e.g., spouse, children). The consultation might be performed by a tr ained counselor, adva nced practice nurse, • physician assistant, or social worker. As Part of Primary Care Regular and periodic conversations are held with patients who do not have a serious disease regarding their valu es, goals, and preferences: This conversation can be led by a nonphysician. • • The choice of health care agent should be reviewed. Initial Diagnosis of Chronic Illness (Disease Management) Further discussion takes place at the initial di agnosis of a chronic life-limiting illness (although the end-point still may be years out): • A physician should explain the diagnosis, the likely course of the illness, complications to watch for, and ways to slow the disease’s progression. A nonphysician can ensure that a health • care agent is named and encourage a agent and what patient-agent discussions conversation about what it means to be an should take place. As Health Worsens (Case Management) turning points in the disease (major treatment changes; Discussion also takes place at significant side effects or “turns for the worse”; onset of comorbidities): ussions, which also should participate in these disc Members of the care team can • As the disease worsens, family members include the designated health care agent. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

171 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-54 DYING IN AMERICA advice. Spiritual counseling can be may benefit from counseling and practical offered. • Patient and family should be asked how mu ch information they want about prognosis and what to expect. In the Final Year of Expected Life Discussion takes place again when if it occurred in the next death would not be a surprise year: ussions is offered to increase the • The opportunity for thoughtful POLST disc likelihood that preference s for care and treatment are accessible and honored. • A “palliative care time out”—a required fam ily meeting after a patient has been in days—is held so that everyone stops and intensive care for a certain number of being done and why. reconsiders what is Members of the interdisciplinary health care team work with the family and health • eir role and potentially forest all complicated bereavement. care agent to support th Members of the interdisciplinary health care team obtain help for the family with • practical matters. Special Considerations for Seriously Ill Children Children transitioning from childhood to adulthood should choose a health care agent. For minors with decision-making capacity near the end of life, according to the National Quality ces for medical care, including assent for Forum standard, the child’s views and preferen sion making (NQF, 2006; opriate weight in deci treatment, should be documented and given appr Dahlin, 2013). When the child's wishes differ from those of the adult decision maker, appropriate professional staff members shoul d be made available for consultation and intervention. RESEARCH NEEDS rectives—whether they have been created, A large body of research exists on advance di whether they have been followed, and what impa ct they have on important outcomes of care. reason that the usefulness of simp le checkbox-style documents has This literature is a principal come into question. Much less research has be en conducted on the effectiveness of more thorough advance care planning co nducted over time and tailored to immediate decisions as further investig ation into how l described above. Also needed is needed, as in the life-cycle mode king and behavioral economics can be applied advances in thinking about shared decision ma s on preparing people for in-the-moment decision specifically in end-of-life situations. A focu making, rather than specifying exact treatment pr eferences, holds promise as well. With respect r community-wide efforts to en to the POLST paradigm and othe courage advance care planning, es to ensure the integrity of developing and validating best practic the research challenge is one of vestigations should be her settings. Likewise, in these program models as they are diffused to ot alth records can support in which electronic he initiated to determine the most effective ways advance care planning. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

172 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-55 the various means used by individuals to arrive at Decision-making theory points to ages of change theory described in this chapter is one such model. A important decisions; the st better understanding of patient and family decisi on-making styles might help clinicians work with their patients more effectively and lead to decisions most relevant and appropriate to each patient. In addition, more information is needed on the way the care system respects, responds to, and sometimes shapes the decisions of patients and whether or in what ways this is affected by race, gender, income, literacy, insurance status, or other factors. Findings from such research should be useful in improving communication betw een clinicians and the full range of patients they serve. This type of resear ch might lead to the developmen t of appropriate decision supports as well. Specific research needs include investigation into the eff ectiveness of strategies for advance care planning (versus advance directiv es) and their effects on achieving concordance with patients’ informed prefer ences and quality of care. Spec ific needs relate also to and adolescent advan the development of guidelines for pediatric ce care planning; • • children’s involvement in end-of-life continued research toward understanding decision making and comparative effectiveness studies of different approaches to decision support and communication; c, and cultural differences • understanding of racial, ethni in advance care planning among nursing home residents; best practices and needs for different As • ian, South Asian, and Hispanic populations; • ways to improve shared decision making; lementing choice architecture in advance • the significance of and strategies for imp care planning programs; and the most effective and cost-effective designs for financial incentives and • e in advance care pl reimbursement for clinicians to participat anning, recognizing that doing so takes time and may require repeated consultations. FINDINGS, CONCLUSIONS , AND RECOMMENDATION Findings and Conclusions nd conclusions on alignment of the care This study yielded the following findings a patients receive with the care they want. Decision-Making Capacity cognitively able to Most people nearing the end of life are not physically, mentally, or ly 40 percent of adult medical inpatients, 44- make their own decisions about care. Approximate t of older adults facing treatment decisions 69 percent of nursing home residents, and 70 percen . Furthermore, the majority of these patients are incapable of making those decisions themselves will receive acute hospital care from physicians who do not know them. As a result, advance care their values, goals, and ceive care that reflects planning is essential to ensure that people re 2002; Silveira et al., 2010 preferences (Raymont et al., 2004; Kim et al., ; Nelson et al., 2006). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

173 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-56 DYING IN AMERICA Comfort-focused Care versus Acute Care People who capture their preferences for care ne ar the end of life most commonly, but not always, choose care that is focused on alleviat ing pain and suffering. Since the default mode of , a higher prevalence of advance care planning treatment is acute care in the hospital, however and medical orders will be more likely to ach s (Mack et al., 2010b; ieve patient preference Wright et al., 2008; Billings, 2012). Implementation of Patient Wishes Most people, even those who are older and have serious illnesses, do not complete advance directives, and even when these documents are completed, they rarely affect treatment decisions. They often are unavailable or difficult to interpret, and they may contradict the ople who have had conversations preferences of the family or clinicians. On the other hand, pe erences (although they may not have completed about end-of-life care values, goals, and pref y to receive unwanted tr eatment. Advance care formal advance directive documents) are less likel should be identified early in ong process. Health care agents planning should be considered a lifel this process, and for people with advanced serious illnesses, POLST forms should be used (Kelley et al., 2011; Fried et al., 2007; Ditto et al., 2006; NQF, 2006; Hickman et al., 2011; Hammes et al., 2012). However, most people—pa rticularly younger, poorer, minority, and less educated individuals—do not have conversations about end-of-life care. Clinicians need to recognize the multiple barriers to effective communication on these issues, initiate the conversation themselves, and take time and make the effort to ensure that patient and family 2009; Phipps et al., and understanding (Clements, decisions are made with adequate information Waite et al., 2003, Volandes et al., 2008a; Sudore et al., 2003; Curtis and Engelberg, 2011; 2010). Lack of Clinician Communication Skills The quality of communication between clinic ians and patients who have advanced eath falls far short of the ideal, particularly with respect to serious illnesses or are nearing d d spiritual concerns, and finding the right discussing prognosis, dealing with emotional an Advance care planning will not balance between hoping for the best and preparing for the worst. succeed without improved communication generally. Incentives, quality standards, and system support for the time required to conduct such co nversations are necessary to promote improved communication that meets the standards expect ed by patients and families (Dias et al., 2003; ack et al., 2003; NQF, Anderson et al., 2008; B Epstein and Street, 2007; Smith et al., 2013b; 2006). Recommendation ality standards should develop organizations that establish qu Professional societies and other communication and advance care planning that are measurable, standards for clinician-patient hould change as needed to reflect the evolving actionable, and evidence based. These standards s istent with emerging evidence, methods, and population and health system needs and be cons these standards and organizations should adopt technologies. Payers and health care delivery re plans, and the reporting of grate them into assessments, ca their supporting processes, and inte health care quality. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

174 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING 3-57 CLINICIAN-PATIENT COMMUNICATI cieties should adopt Payers should tie such standards to reimburse ment, and professional so ment, licensing, and credentialing to tying the standards to reimburse policies that facilitate encourage all individuals, including child • ren with the capacity to do so, to have the opportunity to participate actively in their he oughout their lives and as they alth care decision making thr approach death, and receive medical and related so cial services consistent with their values, goals, and informed preferences; quality conversations about adva clinicians to initiate high- nce care planning, integrate the • patients, and communicate with results of these conversations into the ongoing care plans of ested by the patient; and other clinicians as requ • planning discussions with their patients because clinicians to continue to revisit advance care umstances may change over time. individuals’ preferences and circ PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

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181 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-64 DYING IN AMERICA Evans, L. R., E. A. Boyd, G. Malvar, L. Apatira, J. M. Luce, B. Lo, and D. B. White. 2009. Surrogate decision-makers’ perspectives on discussing prognosis in the face of uncertainty. American Journal of Respiratory and Critical Care Medicine 179:48-53. Fischer, S., Min, S.J., Cervantes, L., and Kutner, J. 2013. Where do you want to spend your last days of life? Low concordance between preferred and act ual site of death among hospitalized adults. Journal of Hospital Medicine 8(4):178-183. Fischer, S. M., A. Sauaia, S-J. Min, and J. Ku tner. 2012. Advance directive discussions: Lost in 15(1):86-92. translation or lost opportunities? Journal of Palliative Medicine Flannelly, K. J., L. L. Emanuel, G. F. Handzo, K. Galek, N. R. Silton, and M. Carlson. 2012. A national BMC Palliative Care 11(10). study of chaplaincy services and end-of-life outcomes. Fowler, F. J., Jr., B. S. Gerstein, and M. J. Ba rry. 2013. How patient centered are medical decisions? Results of a national survey. JAMA Internal Medicine 173(13):1215-1221. acial disparities in end-of-life planning and services for Frahm, K. A., L. M. Brown, and K. Hyer. 2012. R deceased nursing home residents. Journal of the American Medical Directors Association 13(9):819.e7-e11. Fried, T. R., and J. R. O’Leary. 2008. Using the e xperiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning. Journal of General Internal Medicine 23(10):1602-1607. Fried, T.R., E.H. Bradley, V.R. Towle, and H. A llore. 2002. Understanding the treatment preferences of New England Journal of Medicine 346(14):1061-1066. seriously ill patients. y. 2003. Prognosis communication in serious illness: Fried, T. R., E. H. Bradley, and J. O’Lear Perceptions of older patients, caregivers, and clinicians. Journal of the American Geriatrics Society 51(10):1398-1403. 2006. Changes in prognostic Fried, T. R., E. H. Bradley, and J. O’Leary. awareness among seriously ill Journal of Palliative Medicine 9(1):61-69.Fried, T. R., J. O’Leary, older persons and their caregivers. P. Van Ness, and L. Fraenkel. 2007. Inconsistency ov er time in the preferences of older persons with 55(7):1007- advanced illness for life-sustaining treatment. Journal of the American Geriatrics Society 1014. Fried, T. R., C. Redding, M. Robbins, A. Palva, J. O’Leary, and L. Iannone. 2010. Stages of change for the component behaviors of advance care planning. Journal of the American Geriatrics Society 58(12):2329-2336. Friedman, S., and D. Gilmore. 2007. Factors that impact resuscitation preferences for young people with Intellectual and Developmental Disabilities 45(2):90-97. severe developmental disabilities. 2013. Making decisions for hospitalized older adults: Fritch, J., S. Petronia, P. R. Helft, and A. Torke. Ethical factors considered by family surrogates. 24(2):125-134. Journal of Clinical Ethics Fromme, E. K., D. Zive, T. A. Schmidt, E. Olszew ski, and S. W. Tolle. 2012. POLST registry do-not- resuscitate orders and other patient treatment preferences. Research letter. Journal of the American 307(1):34-35. Medical Association Fromme, E. K., Zive, D., Schmidt, T. A., Cook, J. N. B., and Tolle, S. W. 2014. Association between Physician Orders for Life-Sustaining Treatment fo r scope of treatment and in-hospital death in Oregon. Journal of the American Geriatrics Society [epub ahead of print].Fujimori, M., and Y. rding communication of bad news: A systematic Uchitomi. 2009. Preferences of cancer patients rega 39(4):201-216. literature review. Journal of Clinical Oncology Fujimori, M., T. Akechi, T. Morita, M. Inagaki, N. Akizuki, Y. Sakano, and Y. Uchitomi. 2007. Psycho-Oncology 16:573-581. Preferences of cancer patients regarding the disclosure of bad news. Ganti, A. K., S. J. Lee, J. M. Vose, M. P. Devetten, R. G. Bociek, J. O. Armitage, P. J. Bierman, L. J. Maness, E. C. Reed, and F. R. Loberiza, Jr . 2007. Outcomes after hematopoietic stem-cell patients with or without advance care planning. transplantation for hematologic malignancies in 25(35):5643-5648. Journal of Clinical Oncology Gao, W., M. I. Bennett, D. Stark, S. Murray, and I. J. Higginson. 2010. Psychological distress in cancer care: Prevalence, associated factors and clinical implications. from survivorship to end of life European Journal of Cancer 46(11):2036-2044. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

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191 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-74 DYING IN AMERICA Trice, E. D., and H. G. Prigerson. 2009. Communicat ion in end-stage cancer: Review of the literature and future research. Journal of Health Communication 14(Suppl. 1):95-108. Tuffrey-Wijne, I., and L. McEnhill. 2008. Communi cation difficulties and intellectual disability in end- of-life care. International Journal of Palliative Nursing 14(4):189-194. Tulsky, J. A., G. S. Fischer, M. R. Rose, and R. M. Arnold. 1998. Opening the black box: How do 129(6):441-449. Annals of Internal Medicine physicians communicate about advance directives? Venneman, S. S., P. Namor-Harris, M. Perish, and M. Hamilton. 2008. “Allow natural death” versus “do not resuscitate”: Three words that can change a life. Journal of Medical Ethics 34:2-6. Veysman, B. 2010. Shock me, tube me, line me. Health Affairs 29(2):324-326. opley, and K. Fryer-Edwards. 2006. Beyond substituted Vig, E. K., J. S. Taylor, H. Starks, E. K. H judgment: How surrogates navigate end-of-life decision-making. Journal of the American Geriatrics Society 54(11):1688-1693. Vig, E. K., H. Starks, J. S. Taylor, E. K. H opley, and K. Fryer-Edwards. 2007. Surviving surrogate decision-making: What helps and hampers the expe rience of making medical decisions for others. Journal of General Internal Medicine 22(9):1274-1279. Volandes, A. E., M. Ariza, E. D. Abbo, and M. Paasche-Orlow. 2008a. Overcoming educational barriers 11(5):700- Journal of Palliative Medicine for advance care planning in Latinos with video images. 706. Volandes, A. E., M. Paasche-Orlow, M. R. Gillick, E. F. Cook, S. Shaykevich, E. D. Abbo, and L. Lehmann. 2008b. Health literacy not race predicts end-of-life care preferences. Journal of Palliative Medicine 11(5):754-762. Volandes, A. E., G. H. Brandeis, A. D. Davis, M. K. Paasche-Orlow, M. R. Gillick, Y. Chang, E. S. Walker-Corkery, E. Mann, and S. L. Mitchell. 2012a . A randomized controlled trial of a goals-of-care video for elderly patients admitted to skilled nursing facilities. Journal of Palliative Medicine 15(7):805-811. Volandes, A. E., T. T. Levin, S. Slovin, R. D. Carvajal, E. M. O’Reilly, M. L. Keohan, M. Theodoulou, M. Dickler, J. F. Gerecitano, M. Morris, A. S. Ep stein, A. Naka-Blackstone, E. S. Walker-Corkery, Y. Chang, and A. Noy. 2012b. Augmenting advance care planning in poor prognosis cancer with a video decision aid: A pre-post study. Cancer 118(17):4331-4338. Volandes, A. E., M. K. Paasche-Orlow, S. L. Mitchell , A. El-Jawahri, A. D. Davis, M. J. Barry, K. L. lker-Corkery, Y. Chang, L. López, M. Kemeny, L. Hartshorn, V. A. Jackson, M. R. Gillick, E. S. Wa A. F. Eichler, A. S. Epstein, A. Noy, T. T. Bulone, E. Mann, S. Misra, M. Peachey, E. D. Abbo, Levin, and J. S. Temel. 2013. Randomized contro lled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. Journal of Clinical Oncology 31(3):380-386. A. Cohen, S. S. Waikar, R. S. Phillips, and E. P. Wachterman, M. W., E. R. Marcantonio, R. B. Davis, R. McCarthy 2013. Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists. JAMA Internal Medicine 173(13):1206-1214. Wagemans, A., H. van Schrojenstein Lantman-de Valk , I Proot, J. Metsemakers, I Tuffrey-Wijne, and L. Curfs. 2013. The factors affecting end-of-life decision-making by physicians of patients with Journal of Intellectual Disability intellectual disabilities in the Netherlands: A qualitative study. Research 57(4):380-389. Waite, K. R., A. D. Federman, D. M. McCarthy, R. Sudor e, L. M. Curtis, D. W. Baker, E. A. Wilson, R. Hasnain-Wynia, M. S. Wolf, and M. K. Paasche-Orlow. 2013. Literacy and race as risk factors for 61(3):403- Journal of the American Geriatrics Society low rates of advance directives in older adults. 406. H. Sanati, S. M. Asch, and N. S. Wenger. 2008. Walling, A., K. A. Lorenz, S. M. Dy, A. Naeim, ation and care planning in cancer care. Journal of Evidence-based recommendations for inform 26(23):3896-3902. Clinical Oncology Medical apartheid: The dark history of medical experimentation on black Washington, H. A. 2006. Americans from colonial times to the present . New York: Anchor Books. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

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193 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 3-76 Zabora J., K. BrintzenhofeSzoc, B. Curbow, C. Hooker, and S. Piantadosi. 2001. The prevalence of 10(1):19-28. Psychooncology psychological distress by cancer site. Mir, C. P. Sison, T. Liberman, M. L. Lesser, L. B. Zaide, G. B., R. Pekmezaris, C. N. Nouryan., T. P. Cooper, and G. P. Wolf-Klein. 2013. Ethnicity, race, and advance directives in an inpatient palliative care consultation service. Palliative and Supportive Care 11(1):5-11. Zaleskiewicz, T., A. Gasiorowska, and P. Kesebir. 2013. Saving can save from death anxiety: Mortality salience and financial decision-making. PLOS ONE 8(11):e79407. Zettel-Watson, L., P. H. Ditto, J. H. Danks, and W. D. Smucker. 2008. Actu al and perceived gender differences in the accuracy of surrogate decisions about life-sustaining medical treatment among 32(3):273-290. older spouses. Death Studies Zhang, B., A. A. Wright, H. A. Huskamp, M. E. Nilsson, M. L. Maciejewski, C. C. Earle, S. D. Block, P. K. Maciejewski, and H. G. Prigerson. 2009. Health care costs in the last week of life: Associations with end of life conversations. 169(5):480-488. Archives of Internal Medicine Zheng, N. T. D. B. Mukamel, T. Caprio, S. Cai, and H. Temkin-Greener. 2011. Racial disparities in in- Medical Care hospital death and hospice use among nursing home residents at the end-of-life. 49(11):992-998. eld, and D. B. White. 2012. Surrogate decision makers’ Zier, L. S., P. D. Sottile, S. Y. Hong, L. A. Weissf interpretation of prognostic inform Annals of Internal Medicine ation: A mixed-methods study. 156(5):360-366. at the end of life: Hospital and ICU perspectives. Zilberberg, M. D., and A. F. Shorr. 2012. Economics Seminars in Respiratory and Critical Care Medicine 33(4):362-369. Pathways to POLST registry development: Lessons learned. Zive, D. M., and T. A. Schmidt. 2012. OLST-Registry.pdf (accessed October 2, 2013). http://www.polst.org/wp-content/uploads/2012/12/P PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

194 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING CLINICIAN-PATIENT COMMUNICATI 3-77 Annex 3-1 Advance Care Planning in the Context of Common Serious Conditions described in this appendix, all of which For each of the four common serious conditions , the failure to provide are leading causes of death in the United States palliative care—important components of which are the setting of treat ment goals and effective communication among r shortcoming in the quality of care. patient, family, and clinicians—is a majo HEART FAILURE in the United States in cause of more than 56,000 deaths Heart failure was the primary y 9 deaths (274,000 deaths) (Go et al., 2013). 2009 and was a contributing cause in 1 of ever About half of people who have heart failure di agnosis (CDC, 2013a). The e within 5 years of di ssions through the emergency department condition accounts for some 800,000 hospital admi 36 each year (Collins et al., 2013). Patients and families need good counseling so they understand the specific end-of-life clude the disease’s unpredictability and the quandaries raised by heart failure. These in eath, which heightens the need to considerable risk of sudden d designate a health care agent and specify the circumstances under which permanen t pacemakers or defibrillators should be deactivated (Shah et al., 2013). of medical literature A comprehensive review of almost 25 years found little evidence of and heart failure patients regarding care discussions between health care professionals future care options (Barclay preferences, disease progression, or et al., 2011). The authors note mbers regarding whether and patients/family me the frequent lack of agreement between doctors on that was exchanged (see also, Kirkpatrick such discussions had occurred and the informati 37 ). Although some of these studies involved relatively small et al., 2007; DesHarnais et al., 2007 were that heart failure patients numbers of patients, consistent findings have mixed views about having these convers • nting a great deal ations, with some wa of information and some wanting no details about their condition; and 36 Heart failure hospitalizations are considered an ambul atory care-sensitive condition by the federal Agency for tent.aspx?id=38562. litymeasures.ahrq.gov/con Healthcare Research and Quality: http://www.qua 37 The study by DesHarnais and colleagues (2007) involved 30 patients with heart failure (42 percent of the study population), as well as 41 patients with terminal cancer diagnoses. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

195 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-78 DYING IN AMERICA • are most likely to want such conversations when they are unwell and in the hospital (a time when they may be least able to process information effectively). In addition, health care professionals • is for heart failure difficult, which find establishing a diagnosis and prognos complicates the task of explaining the c ondition to patients in a way that is not frightening and determining the appropriate timing for the discussion (Barclay et al., 2011); • control and place of death and the do not know patient preferences for pain financial/religious considerati ons that factor into those pr eferences (DesHarnais et al., 2007); and tend to focus on immediate concerns of dis • ease management, instead of viewing heart failure as a terminal illness (Barclay et al., 2011). The articles reviewed by Barclay and colle agues (2011) indicate that patients value clinicians’ communication skills, although many cardi ology professionals believe they lack such pressures and manner and patients’ re luctance to ask questions are among skills. Clinicians’ time the identified barrier s to conversation on these issues. ng model was tested in a Midwest health A heart failure-specific advance care planni system (Schellinger et al., 2011). The model us ed the Respecting Choices program, discussed cluded a facilitated, in-depth in earlier in this chapter, and in terview with patients and their family/health care agents. Discussion tools comp leted during the disease-specific advance care ts’ electronic h planning interviews were scanned into patien ealth records. The study found no hom the model was used and a control group significant difference between patients among w with respect to inpatient and emergency depa rtment admissions, although among patients who more than twice as likely to eir advance care planning were died, those who had completed th have been enrolled in hospice. The health sy stem’s management was sufficiently encouraged by tion of advance directives to uiting patients and achieving comple this study’s effectiveness in recr expand training in the model, improve the visibili ty of advance care planning information in the electronic health record, and continue implementation efforts. CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD) COPD is the cause of significant morbid ity and mortality worl dwide (WHO, 2014). In se of death (CDC, 2012), and accounted for 715,000 the United States, it is the third leading cau t of which were among adults aged 65 and hospitalizations in 2011, approximately 65 percen a frequent cause of eart failure, COPD is older (American Lung Association, 2013). Like h emergency hospitalizations, is progressive, has fr ightening and disabling symptoms (principally severe shortness of breath and anxiety), has an unpredictable trajectory, is associated with multiple comorbidities, and is a not infrequent cause of sudden death. end-of-life preference s with their physician Few patients with COPD have discussed their know they have a life-limiting illness or (Heffner, 2011; Patel et al., 2012), and many do not greater advance care planning diner et al., 2009). The barriers to even what that illness is (Gar discussions resemble those for other medical conditions, with the added difficulty of multiple PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

196 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life CLINICIAN-PATIENT COMMUNICATI ON AND ADVANCE CARE PLANNING 3-79 COPD phenotypes and multiple associated comorbid conditions that can affect the disease’s course (Heffner, 2011; Patel et al., 2012). Patients with COPD have given physicians low marks with respect to discussing the specific issues of prognosis, what dying might be like, and spirituality a nd religion, while at the same time acknowledging their general communicati on skills (willingness to listen and address unication about care planning patients’ questions and concer ns) (Curtis et al., 2004). Comm tensive care unit rather than in the primary care typically occurs in the crisis situation of an in physician’s office, with each discipline beli eving the conversation is someone else’s responsibility (Gott et al., 2009). COPD’s acute exacerbations followed by partia l recovery “lull physic ians into thinking [advance care planning] can wait until a future date and clouds the definition of what constitutes ‘end of life’ because points of transition are so poorly recognizable” (Heffner, 2011, p. 105). In this unpredictable disease, models for in-the-mom ent decision making may be more useful than discussions about future pref erences based on hypothetical ou tcomes (Patel et al., 2012). COPD (and many other chronic, progressive Mental health issues that characterize ning discussions. The link between cigarette conditions) further complicate advance care plan smoking and COPD stimulates feelings of remors e, shame, and guilt, which decrease patients’ ng and suggest a need for psychological support motivation for engaging in advance care planni and possible psychotherapeutic treatment (L indqvist and Hallberg, 2010; Heffner, 2011). Depression and anxiety are re seases, and are linked to latively common in chronic di increased health care utilization and higher disability rates. De pression also affects patients’ choices about care and “leads to social isolati on and loneliness, which are also experienced by patients’ family caregivers,” who may stop encourag ing them to engage in advance care planning (Heffner, 2011, p. 106). CANCER Most of the research on advance care planni ng for patients with specific diseases has been conducted among patients with cancer, which is responsible for more than half a million an emotionally laden, often disruptive, and U.S. deaths per year (CDC, 2013b). “Cancer is families and providers” (Walling et al., 2008, p. sometimes tumultuous experience for patients, pect of good oncology care is good communication 3896). For that reason alone, an essential as about the disease, its path, and choices for tr eatment (Trice and Priger son, 2009). (See also the section of this chapter on handling emotional encounters.) Advance care planning is recommended for pa tients with cancer at several specific points: at diagnosis, at any subs equent key times when goal-orient ed discussions are appropriate otherapy regimens are contemplated, when (e.g., when invasive procedures or new chem on to an intensive care unit), neurological symptoms or brain metastases appear, or upon admissi and before an expected death (Walling et al., 2008). Guidelines from the National onsensus Project for Quality Palliative Care Comprehensive Cancer Network and the National C re planning discussion w recommend that physicians have an advance ca ith any patients who an a year (Dahlin, 2013; NCCN, have “incurable” cancer and an expected life span of less th 2013; Bomba and Vermilyea, 2006). advanced cancer often are unexpressed and Treatment preferences of patients with ng styles of treatment in the care often reflects “the prevaili undiscussed (Mack et al., 2010b), and to receive cancer treatment” (Goodman et al., regions and health care systems where they happen PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

197 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 3-80 DYING IN AMERICA 2013, p. 1). If these discussions occur, evidence fr om large studies suggests they tend to occur late in the disease trajectory, when patients al ready are in decline, and during acute hospital admissions, whereas they might better be acco mplished during less stressful outpatient visits (Mack et al., 2012). However, patients who have end-of-life disc ussions of any kind are more likely than with their wishes, especially when those those who do not to receive care in accordance discussions take place relatively early in the course of the illness (Goodman et al., 2013). Compared with patients who do not have thes e discussions, those who do, as well as patients who understand they are terminally ill, are more lik ely to receive end-of-lif e care consistent with their preferences (Mack et al., 2010b). Those who have end-of-life discussions also have lower rates of ventilation, resuscitation, and admission to the intensive care unit and are more likely to enroll in hospice earlier; early hospice enroll ment is associated with improved patient and caregiver quality of life (Wright et al., 2008). Despite these benefits, while some people “s et limits on the amount of discomfort and possible treatments to prolong life, regardless of treatments they will accept,” others “want all possible that choosi discomfort” (Byock, 2013, p. 7). Ironically, it is ng intensive or life- extending treatment in the face of advanced di sease does not always increase longevity (e.g., Mack et al., 2010b). In a highly re introduction of trial of early garded randomized controlled 38 palliative care in metastatic lung cancer, onger in the patients who survival was actually l received palliative care and less chemotherapy (Temel et al., 2010). ss end-of-life matters varies among individuals The degree to which patients want to discu and families, over time, and in the face of changing circumstances, so that “the information preferences of a particular pa y predicted by demographic, cultural, or tient cannot be reliabl cancer-specific factors” (Russe ll and Ward, 2011, p. 191). Doctors are not accurate at guessing k, although evidence suggests that this does not what those preferences will be; they must as occur systematically. Mack and colleagues (201 2) found that medical oncologists documented out a quarter of their patients. end-of-life discussions with only ab DEMENTIAS Alzheimer’s disease is the sixth leading cause of death in the United States and was the direct cause of more than 83,000 deaths in 2010 (CDC, 2013b), although pneumonia or other manifestations of frailty often are listed as the cause of death for people with Alzheimer’s half of Americans aged 85 and older have disease and dementia. Estimates are that nearly Alzheimer’s disease (CDC, 2011). More than ha lf of patients with Alzheimer’s disease their care eventually end up ing capacity, and decisions about (54 percent) lack decision-mak or surrogates (Sessums et al., 2011). being made by their health care agents Dementia differs from many other cognitive impairments in that the people afflicted went ons and acquired the inability to through a lifetime of making decisi continue doing so only with ronic conditions. Thus, there presumably was a advancing age or the appearance of other ch period of many years during which people with deme ntia would have been capable of expressing preferences for treatment. 38 fically included the advance care planning activities of In the Temel et al. (2010) study, palliative care speci establishing goals of care and assisting with decision making regarding treatment. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

198 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life ON AND ADVANCE CARE PLANNING 3-81 CLINICIAN-PATIENT COMMUNICATI Dementias also are different from many othe r conditions in that they typically are is a progressive neurodegenerative disorder for progressive. Huntington’s disease, for example, which there is no disease-altering treatment and th in institutionalization. at eventually results and impulsive behavior early in th Because of the pattern of erratic e disease, those afflicted often have difficulty expressing themselves verbally. lose the support of friends or family, and patients dents with Huntington’s disease, a quarter In a study involving 53 specialized nursing home resi ted cardiopulmonary resusc of the patients (or their representatives) reques itation (Dellefield and udy of 323 nursing home residents found that when health care Ferrini, 2011). By contrast, a st typical in advanced agents understood the patient’s poor prognosis and th e clinical complications thorize burdensome interventions, such as dementia, they were much less likely to au hospitalization, emergency room visits, tube feed ing, or intravenous therapy (Mitchell et al., the health care agents had been counseled by a 2009). In this study, fewer than one in three of d received prognostic wer (18 percent) ha physician about these complications; even fe information from a physician. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

199 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life n A n 2 2 nex 3- T n Physi c aining t t ife Sus L t n c ian Ord e n Orego L rs for e n reatme T L ST) Fo r L (PO r m UNCO Y: P CO P RRECTE D PROOFS TION A A EPUBLIC R R D P 3-82 Copyright © National Academy of Sciences. All rights reserved.

200 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life U IA G G IAN -PATIE N N T COMM U 3-83 NICATION CLINIC AND ADV A A NCE CAR E E PLANNIN EPUBLIC P Y: UNCO A CO P RRECTE D A TION D PROOFS R P R Copyright © National Academy of Sciences. All rights reserved.

201 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life N DYI N 3-84 G IN AME R R ICA CO P P Y: UNCO RRECTE D P R D PROOFS R EPUBLIC A A TION Copyright © National Academy of Sciences. All rights reserved.

202 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4 Professional Education and Development Education of health professionals who provide care to people neari ng the end of life has improved substantially in several areas sin ce the Institute of Me dicine (IOM) reports (IOM, 2003) were published. Most When Children Die Approaching Death (IOM, 1997) and me established as a defined medical specialty, notably, hospice and palliative medicine has beco with 10 cosponsoring cer tification boards. Despite this pr ogress, however, major educational deficiencies remain with re spect to end-of-life care. This chapter begins by summ arizing progress made in pr ofessional education with respect to end-of-life care sin ce the above two IOM reports were issued, as well as deficiencies teaching all physicians an d nurses about palliative that remain. It then describes impediments to ovided by clinicians care. Removing these impediments would enhance ba sic palliative care as pr who are not hospice and palliative medicine specialists. Next, the chapter describes the roles and preparation of palliative care team members, in cluding specialists in palliative care in the professions of medicine, nursi chaplaincy; rehabilitation ng, social work, pharmacy, and therapists and direct care workers also are di scussed. The chapter ends with the committee’s ing change in professional education. findings, conclusions, and recommendation on creat PROGRESS AND CONTINUING NEEDS end-of-life care curricula and recommends creating and testing When Children Die educational experiences for all health care profe ssionals who work with children and families, as lliative care specialists (IOM, 2003). Approaching Death well as specialty clinicians and pa r-specialty status. The ne to specialty or nea includes a recommendation to raise palliative medici report’s recommendation 5 says, in part, “Palli ative care should become, if not a medical ea of expertise, education, and specialty, at least a defined ar research” (IOM, 1997, pp. 9, 12; see with the board certification recommendation has been realized also pp. 224-227). This important of thousands of hospice and pall other disciplines. alists drawn from iative medicine speci Palliative care specialties have been devel oped as well for advanced practice nurses and s emerged in social work, and another is under registered nurses. A palliative care specialty ha way in chaplaincy. Nearly 100 hospice and pallia tive medicine fellowship programs, with the ve gained accreditation. Similar gains have capacity to graduate some 200 fellows annually, ha d palliative care and periences in hospital-base occurred in nursing and social work. Clinical ex ailable. Other areas of progress include the outpatient hospice have become more widely av following: PROOFS UNCORRECTED COPY: PREPUBLICATION 4-1 Copyright © National Academy of Sciences. All rights reserved.

203 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-2 DYING IN AMERICA • Faculty preparation —Increasing numbers of faculty members have palliative care credentials. Since Approaching Death was published, important efforts to train faculty have included the F aculty Scholars Program for phys icians and nurses and the Social Work Leadership Development Award s, both initiatives of the Open Society Institute’s Project on Death in America (O pen Society Institute, 2004). Such efforts ative Education Resource Center (Medical also have included the End of Life/Palli College of Wisconsin, undated) and faculty recognition through the Department of Veterans Affairs (VA) Faculty Leader Proj ect for Improved Care at the End of Life (Stevens et al., 1999). Two major ongoi ng continuing education programs—the Education in Palliative a nd End-of-life Care progra m and End-of-Life Nursing Education Consortium—together have trai ned thousands of physicians and nurses through a train-the-tr ainer approach. • Medical education —Medical students today have great er exposure than before to end-of-life knowledge and sk ills in medical schools. Education in palliative care is offered in 99 percent of U.S. medical schools, usually as part of another course, and all medical schools offer some type of instruction on death and dying, although the ear curriculum (Dickinson, a mere 17 hours in the 4-y average total instruction is the Association of American Medical 2011). In a 2013 annual survey conducted by medical students deemed the instruction Colleges, nearly 80 percent of graduating they received in palliativ e care and pain management appropriate, and about 20 1 percent thought it inad equate (AAMC, 2013). • Professional infrastructure —As reflected in many of the s ources cited in this report, e care has been published in important research on palliativ first-tier journals, and several new peer-reviewed journals on pall iative care have been launched. Moreover, the number of active organizations dedicated to the advancement of palliative care, partly through the setting or promotion of standards, has grown and now includes the American Academy of Hospice and Pallia tive Medicine, the Center to Advance Palliative Care, the National Hospice and Pa lliative Care Organization (formerly the ce and Palliative Nurses Association, and National Hospice Organization), the Hospi the Social Work Hospice and Palliative Care Network. • —Major gains have been made in the knowledge base of palliative Knowledge base care. These gains are eviden ced in palliative ca re textbooks (e.g., in medicine, Hanks et al. [2009] and Bruera et al. [2009]; in nursing, Ferrell and Coyle [2010]; and in . [2011], and Carter et al. [2011]), as well pediatrics, Hinds et al. [2010], Wolfe et al as in increased palliative care content in nonspecialty texts. Despite these gains, however, two important de ficiencies persist. First, these knowledge gains have not necessarily been matched by the tr ansfer of knowledge to most clinicians caring was serious illnesses. As was true at the time Approaching Death for people with advanced strong presence in the medical published in 1997, the topic of d eath and dying does not have a very sick children, many family physicians, school curriculum. Similarly, in the care of nd social work have developed rts and colleagues in nursing a pediatricians, and their counterpa 1 By contrast, in an earlier telephone survey of 1,751 U.S. medical students and residents, two-fifths said they felt unprepared to address dying patients’ fears, to manage their own feelings about patients’ deaths or help bereaved s were not considered good teaching cases life care, and nearly half said dying patient families, and to teach end-of- (Sullivan et al., 2003). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

204 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-3 an expertise in palliative care, bu t the overall pattern of inatten tion to palliative and end-of-life care observed in When Children Die still appears to predominat e in the pediatric world. To illustrate, a 2003 survey of 49 pediatric residents at the Children’s Hospital of Pittsburgh found “minimal training, experience, knowledge, competen ce, and comfort in virtually all areas of ny of these areas from the first palliative care for children,” w ith no significant improvement in a r studies also have found that (Kolarik et al., 2006, p. 1952). Othe to the third year of training physicians and other health professionals con tinue to experience minimal or no training in palliative care for the pedi atric population (Liben et al., 2008; Rapoport et al., 2013; Serwint et al., 2006). The second major remaining deficiency involve s the limited number of palliative care specialists. As noted in a later section of this chapter, some 6,500 physicians are board certified in hospice and palliative medicine. In 2010, the na tional shortage in this specialty was estimated and American Academy of Hospice and to be between 6,000 and 18,000 physicians (Lupu Palliative Medicine Workforce Task Force, 2010). In one sense, this shortage estimate could be interpreted as too high because it was based on ive care specialists a supply of only 4,400 palliat 2 ffing levels at “exemplar” institutions. and on a model of demand reflecting sta In another sense, d as too low because it was not population based (or empirically the estimate could be interprete determined). Moreover, it rested on an apparent assumption that people do not need, and present no demand for, specialty palliative care se rvices outside of institutional settings. However, many people outside of institutional settings do need what in this report is termed (see Box 1-2 in Chapter 1). Basic palliative care is vital because basic palliative care hospice and palliative medicine sp ecialists will never be sufficien t in number to provide regular on with an advanced serious illness. Hospice and palliative face-to-face treatment of every pers the palliative care services of clinicians in medicine specialists supplement, and do not replace, primary care and disease-oriented specialties. I am a family physician who provides end-of-life ca re in a rural setting for patients, both at a nursing situations can be, as medical providers we can home and in their personal homes. As difficult as these provide a great deal of comfort walking patients an d families through these end-of-life events by detailing how the events normally transpire. More important, thoug h, is that we are able to provide mental and spiritual care for the patient and family. Once the patient and family realize they are in an end-of-life situation, they are almost always open to care optio ns to help make the dying process meaningful and * physically comfortable for the patient. ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. (IOM, 2003) specify the same four Approaching Death (IOM, 1997) and When Children Die cy in palliative care: scie domains of clinical competen ntific and clinical knowledge; ples, and organizational skills. interpersonal skills and knowledge , ethical and professional princi ts were produced. Box when those earlier repor These domains are as relevant today as they were 4-1 summarizes these domains. 2 In the cited study, the “exemplar” in uded three hospices and one academic stitutions used in modeling demand incl to Advance Palliative Care’s recommended staffing level medical center, and the estimate was based on the Center y 12 patients (Lupu and American Academy of Hospice of one hospice and palliative medicine physician for ever and Palliative Medicine Workforce Task Force, 2010; CAPC, 2014). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

205 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-4 DYING IN AMERICA BOX 4-1 Domains of Clinical Competence in End-of-Life Care Scientific and clinical knowledge and skills • Symptom control and medication management • Patient assessment and caregiver assessment • Physical and emotional symptoms • Advance care planning Interpersonal skills and knowledge • Communication • Respecting patient and family choices (overlap with ethics) Ethical and professional principles • Doing good • Avoiding harm • Respecting patient and family choices (overlap with interpersonal skills) Organizational skills • How the clinician interacts with the system G THE CULTURE OF CAR E THROUGH EDUCATION IMPEDIMENTS TO CHANGIN ith advanced serious Health professions education can help transfor m the care of people w icians, nurses, and other health professionals illnesses. Indeed, far-reaching changes in how phys are educated and trained may be necessa ry to effect that transformation. In the committee’s judgment, three impedimen ssions education and ts in health profe mpassion, and choice in end-of-life care. development have obstructed coordination, co Interacting with each other, these impediments reinforce a general inadequacy in preparing onals to provide basi physicians, nurses, and other health professi c palliative care, and overcoming them would greatly improve the pa lliative care landscape. The three impediments are as follows: l and nursing schools contain too The usual curricula of medica Curriculum deficits: • little content on palliative care. Many physicians and nur ses have entered practice with only a limited understanding of palliative care and generally are ill equipped to meet patients’ basic palliative care needs. Education for medical professionals takes a Lack of interprofessional collaboration: • care requires an interdisciplinary, team- generally siloed approach, whereas palliative parately, physicians, nurses, and other based approach. Having been educated se health professionals have not had the opportunity to develop teamwork skills and attitudes. Neglect of communication skills: Communication skills are neglected in both the • residencies, and te (internships, undergraduate (medical school) and gradua as in the preparation of nurses and other fellowships) education of physicians, as well health professionals. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

206 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-5 PROFESSIONAL EDUCATION AND DEVELOPMENT Curriculum Deficits Undergraduate and Graduate Medical Education In a major advance, the Liaison Comm ittee on Medical Education now requires 3 To the extent that this accredited U.S. and Canadian medical schools to teach end-of-life care. will be at least somewh at prepared to practice policy is carried out, nearly all future physicians basic palliative care. However, the Liaison Committee’s requirement is vague—it does not specifically mention palliative care, for exam ple—and it does not appear to be rigorously enforced through specific standards or clear expectations. Perhaps partly as a consequence, end- of-life care, including principl es and practices of palliative care and hospice and palliative d intensively in U.S. medical schools. medicine, still is not taught widely an d only as part of another course. In a 2008 As noted above, palliative care usually is offere survey on palliative care responded, and just 14 of these in 128 U.S. medical schools, only 47 had a required course (Van Aalst-Cohen et al ., 2008). A recent review found an “absence of on” in palliative care and concluded that most sufficient formal classroom and clinical instructi 4 medical students learn about the subject largel y informally, through “the ‘hidden’ curriculum.” In these authors’ view, this hidden content often presents nega tive messages, such as “death is a medical failure,” and there is no reason to assi gn students to dying patients because there is “nothing to learn” from them (Horowitz et al., 2014, p. 63). When palliative care is taught, results can be impressive. A review of nine studies published in 1996-2006 found “a wide range of format structures and curriculum content,” but ucational curricula and trate that end-of-life ed the author notes that all of the studies “...demons medical students” (Bickel-Swenson, 2007, pp. 233- clinical training improve the competency of e written comments of 593 third-year medical 234). A qualitative assessment of the reflectiv ic and experiential clerkship that included home students before and after taking a 32-hour didact hospice visits and inpatient hospice care f ound a 23 percent improvement in knowledge, a competence, and a 29 percent decrease in their 56 percent improvement in students’ feelings of concerns (von Gunten et al., 2012). Other examples of how hospice and palliative medicine content has been incorporated into medical school curricula include George Washington University’s standardized • patient case on palliative care in the second year, coupled with a course on medical interviewing and decision making; • the University of Rochester’s content on advance care planning, chronic pain provided in the first and second years, management, and discussion of treatment goals supplemented by a session on palliative care in a 2-week follow-up to a clinical rotation in the third year (Shaw, 2012); • lum and establishment of an Office of development of a 4-year integrated curricu Palliative Care by Northeast Ohio Medical University (Radwany et al., 2011); and 3 Liaison Committee on Medical Education standard ED-13 states, in full: “The curriculum of a medical education program must cover all organ systems, and include the important aspects of preventive, acute, chronic, continuing, iaison Committee on Medical Education, 2013, p. 10). This policy was rehabilitative, and end-of-life care” (L initiated in 2000. 4 l policies, evaluation activities, resource allocations, and The “hidden curriculum” is expressed through institutiona For further discussion and a personal view, see Liao institutional “slang,” among other means (Hafferty, 1998). (2014). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

207 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-6 DYING IN AMERICA • the Association of American Medical Colle ges’ collaboration with the Coalition to 5 Transform Advanced Care to identify relevant core competencies. The need for a systematic approach to medical schools’ commitment to hospice and palliative medicine has b een described as follows: lliative care curriculum s hould include didactic and An educationally rich pa clinical experiences where learners observe the role-modeling of competent and compassionate palliative care and have supervised experien tial opportunities. Improvements within individual schools/ residencies still largely rely on the dicine champion who combines commitment presence of an effective palliative me and vision, leadership skills, education sk ills, and clinical skills. To provide meaningful clinical experiences for learners and to mainstream palliative medicine[,] it is crucial to provide faculty development in primary palliative care skills to non-HPM faculty to ensure ca re for the growing population of complex chronically and seriously ill people (Sanchez-Reilly and Ross, 2012, p. 120). and cancer centers typi cally are rooted in The structures of academic medical centers of hospice and palliative medicine specialists more established specialties, impeding the ability to become educators. These structures also fail fessional training. What to facilitate interpro ified hospice and palliative appears to be needed is a core of board-cert medicine specialists serving in appropriate department ducators of medical st udents and residents s or divisions as e and as liaisons with colleagues in other prof essions, especially nur sing, social work, and chaplaincy. A few efforts have been made to tr ain medical school faculty members in palliative care. The annual 2-week Program in Palliative Ca re Education and Practi ce at Harvard Medical School was rated as “transformative” by 82 perc ent of respondents who participated in 2000- 2003 (Sullivan et al., 2005). The shortage of hospice and palliative medicine faculty may in part care research noted in Chapter 2, with faculty reflect the low levels of funding for palliative members’ ability to attract research dollars being a high priority fo r medical schools. One way to ensure attention to hospice and palliative medicine in the undergraduate curriculum, in graduate training, and in the minds of future physicians is to include more of this certification examinations. Currently, little content in medical licensure and specialty board hospice and palliative medicine c ontent appears in the main licensure test, Step 3 of the United States Medical Licensing Examination. As the fi nal phase of the physician licensure examination process, Step 3 centers on biomedical and cl inical science and is open to all medical and osteopathic school graduates who have passed Steps 1 and 2. Authoritative content outlines provide an overview, or “bluep rint,” of the content for 15 areas of the Step 3 examination . Although a few test questions related to (United States Medical Licensing Examination, 2013) specific disorders conceivably involve the terminal phases of illness, there is no blueprint for end-of-life care. Sufficient hospice and palliative medicine content also is lacking in many board certification examinations in specialties in which pecially relevant. In basic palliative care is es 5 tion, identified by the Association of American Medical Colleges with support Core competencies in geriatric educa from the John A. Hartford Foundation, include some aspects of hospice and palliative medicine: pain management; , social, and spiritual needs of patients with advanced the importance of interdisciplinary care; and psychological serious illness and their families (Leipzig et al., 20 09; see also Sanchez-Reilly and Ross, 2012, p. 118). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

208 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-7 PROFESSIONAL EDUCATION AND DEVELOPMENT oncology, end-of-life care and communication co mbined are only 2 percent of the entire examination (ABIM, 2013a). The closest thing to hospice and palliative medicine content in the cardiovascular recertif ication examination, taken by cu rrent cardiologists and other cardiovascular disease practitioners, is a topic called “ethics, malpractice, other” within a “miscellaneous” portion of the ex am content that is only 1.5 per cent of the entire examination (ABIM, 2013b). In the certification examination fo r general internal medicine, “palliative/end- t of the examination content (ABIM, 2013c). of-life care” is 3 percen Continuing Medical Education little exposure to hospice and palliative Because many or most physicians have had cation, efforts have been made to fill the gap medicine in their undergraduate and graduate edu through continuing medical education. Most notabl y, a program originally named Education for Physicians on End-of-life Care (EPEC) was developed in the late 1990s by the American Robert Wood Johnson Foundation. EPEC has Medical Association with support from the reached many physicians and other professionals ning sessions and has through small-group trai as its mission “to educate all healthcare professi onals in the essential clinical competencies of palliative care” (EPEC, 2013b). EPEC uses a train-the-trainer approach to disseminate knowledge and improve skills. highly from the beginning, and 92 percent of 200 physicians Participants rated the project that they used its content in their teaching participating in EPEC training in 1999-2000 reported ng renamed Education in Palliati ve and End-of-life Care, EPEC (Robinson et al., 2004). Since bei now disseminates them through various venues— has developed numerous learning modules and conferences, online learning, and specialized training, with di dactic sessions, videotape a). Nurse practitioners al exercises (CAPC, 2013 presentations, interactive discussions, and practic and other nonphysicians also take advantage of EPEC, making it an inte rdisciplinary training platform. trics has 23 core and two elective topics, Illustrating EPEC’s current scope, EPEC-Pedia taught through 20 distance lear ning modules and six 1-day, in -person conference sessions (EPEC, 2013a). Since 2012, physicians and nurse pr actitioners have participated in “Become an 6 EPEC-Pediatrics Trainer” workshops . Caregivers, emergency medicine, long-term care, ubjects of EPEC training. EPEC has become oncology, and veterans are among the many other s ners with diverse professional essentially self-sustaining through participation fees, and it part associations and other organizations, such as the National Cancer Institute (NCI, 2013). Legislation in the state of California requires that most physicians obtain 12 hours of 7 State legislatures or medical continuing education in pain ma nagement and end-of-life care. licensing boards sometimes do require that physic periodic relicensure, ians, as a condition of take continuing education courses on specified, so cially pressing topics, although it is not clear 8 changing practice patterns. that such continuing educa tion mandates are effective in However, the California requirem among 81 physicians taking a course complying with ent, two-thirds of changing their practi ce patterns, and most 51 immediate respondents reported an interest in 6 Personal communication, S. Friedrichsdorf, Children’s Hospital and Clinics of Minnesota, February 6, 2014. 7 California AB487 (2001), , sec. 2190.5. This is a one-time requirement. Pathologists and Cal. Bus. & Prof. Code radiologists are exempt. Exemptions may also be granted to physicians who are not engaged in direct patient care, do not provide patient consultations, or do not reside in California. 8 For a meta-analysis of the outcome literature on continui ng medical education, see Mansouri and Lockyer (2007). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

209 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-8 DYING IN AMERICA (90 percent) of 31 respondents re ported 4 months later that th eir practice patterns had indeed changed (Leong et al., 2010). Interdisciplinary formats are a common feature of continuing education in At Children’s Hospital Boston, physicians communication related to end-of-life care. participated with nurses, social aplains involved in pediatric workers, psychologists, and ch critical care in a day-long interprofessiona l communication program (the Program to Enhance lls, or PERCS). The program was created by the Institute for Relational and Communication Ski Professionalism and Ethical Practice. In a survey of 110 participants, 106 responded immediately, and 57 of these returned a follow- up questionnaire 5 months later. Respondents course improved their skills and confidence in were nearly unanimous in indicating that the communication (Meyer et al., 2009). rements may limit patient care. In 2012, for In some cases, continuing education requi ) adopted a risk evaluation and mitigation example, the Food and Drug Administration (FDA nded-release and long-acting opioid analgesic strategy for prescribing more than 30 exte tinuing medical education course medications that “strongly encour ages” prescribers to take a con on opioid prescribing (FDA, 2013). The FDA suppor ts making this education mandatory and linking it to prescriber regist ration with the Drug Enforcem ent Administration (American FDA, 2013). Although prescribers of these frequently abused Pharmacists Association, 2012; 9 drugs certainly should be aware of th e attendant risks (see IOM, 2011, pp. 142-148), such a prescribing opioids at all, thereby limiting the requirement might dissuade some clinicians from availability of an important pain relief modality for people with advanced serious illnesses. Nursing Education Accreditation standards for undergraduate ba ccalaureate nursing programs, adopted by ing in 2008, specify that all baccalaureate nursing the American Association of Colleges of Nurs d resolution of end-of- graduates should be prepared to “implement patie nt and family care aroun life and palliative care issues, such as symptom management, support of rituals, and respect for 31). This mandate is analogous to the Liaison patient and family preferences” (AACN, 2008, p. Committee on Medical Educati on standard noted above. l education appears to care seen in medica Historically, the lack of emphasis on palliative have been duplicated in nursing education. For ex ample, registered nurse anesthetists received little training in palliative or nd a literature search involving end-of-life care as students, a preparation of certified register no publications addressing the ed nurse anesthetists found “ importance of incorporating elements of palliative care into nursing and nurse anesthesia practice” (Callahan et al., 2011, p. S15). Oncology nurses were found to be so consis tently distressed when communicating with development of a communication curriculum patients and families about end-of-life care that lliative care (Goldsm ith et al., 2013). An was considered necessary for use in early pa examination of palliative care education for pediatric nurses showed that nurses entering practice “...often were grossly unprepared to care for chil dren and families in need of end-of-life care” of 279 pediatric nurses in Florida found “a good (Malloy et al., 2006, p. 555). However, a survey level of baseline knowledge of palliative care” (Knapp et al., 2009, p. 432), especially in cities 9 In a 2014 state of the state address devoted entirely to problems of addiction, Vermont Governor Peter Shumlin said that treatment for opiate addiction in his state increased by 770 percent, to 4,300 cases (or 1 in about every 150 residents), between 2000 and 2012 (Seelye, 2014). Nationwide opioid overdoses tripled in 20 years, causing 15,500 deaths in 2009 (CDC, 2013). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

210 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-9 PROFESSIONAL EDUCATION AND DEVELOPMENT 10 In a 2006 survey in which lliative care program (Knapp et al., 2011). with a pediatric pa 71 percent of baccalaureate nursing schools partic ipated, 99 percent reported some offering on death and dying, but on average, these totaled less than 15 hours of instruction (Dickinson, 2007). train nursing school faculty and potential Several organizations have joined forces to -Life Nursing Education Consortium (ELNEC) nursing mentors in palliative care. The End-of was initiated in 2000 with 4 years’ support from the Robert Wood Johnson Foundation. The ELNEC program is administered by the American Association of Colleges of Nursing and City began to train graduate nursing of Hope National Medical Center . The National Cancer Institute 11 faculty members using ELNEC in 2002. ELNEC of eight modules, content consists and participants receive a textbook, a 1,000-page syllabus, and other reso urce materials. More than 15,000 nurses and others, an estimated 11,500 of whom are nurse educators, had received ses exist for oncology, ELNEC training by 2013. Besides the core ELNEC tr aining, separate cour pediatrics, critical care, geriat nd advanced practice registered rics, veterans, public hospitals, a nursing (ELNEC, 2013). Examples exist in which pall iative care is integrated in to the undergraduate nursing ol of Nursing, topics roughly conforming to the curriculum. At the University of Rochester Scho a hospice and palliative of-life curriculum, and eight ELNEC modules are included in a core end- r Medical Center, 2013). At the University of care elective is offered (University of Rocheste California, San Francisco, School of Nursing, a cour se in palliative and end-of-life care recently became mandatory for many of the school’s prog rams (Schwartz, 2012). In a very different approach, one nursing school offers a course on pa lliative and end-of-lif e care structured around three apprenticeships—in cogni tive learning, clinical reas oning and know-how, and moral reasoning (Hold et al., 2014). A major textbook in palliative nursing is di vided into general principles, symptom care, special patient in the dying, spiritual assessment and management, the meaning of hope special issues for the nurse populations, end-of-life care across se ttings, pediatric palliative care, in end-of-life care, internati onal models of palliative care, and a conclusion on a good death (Ferrell and Coyle, 2010). Another textbook is divided into caring for the whole person, social and professional issues, psychosoc ial considerations, and physical aspects of dying (Matzo and Sherman, 2010). Schools of Public Health Medical and nursing schools are not the only health professions education venues that In 2011-2013, only 3 of the find little room in their curricula for end-of-lif e and palliative care. a course on end-of-life care policy. Another 49 accredited U.S. schools of public health offered nd-of-life concerns, but most of these offerings 6 public health schools offered some content on e and so did not consider the entire life span embedded this content in courses on aging policy s been developed under the auspices of the (Lupu et al., 2013). A curriculum on the topic ha Foundation for Advanced Education l Institutes of Health, but it in the Sciences at the Nationa apparently has not been widely adopted. 10 A “concept analysis” of pediatric palliative nursing care is provided in Stayer (2012). 11 The eight ELNEC modules are nursing care at the end of life; pain management; symptom management; e care; communication; loss, grief, and bereavement; and ethical/legal issues; cultural considerations in end-of-lif preparation for and care at the time of death. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

211 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-10 DYING IN AMERICA Public health courses on end-of-life care could help lead future health care administrators and policy makers and their educators to incorporate principles of palliative care into health care systems. To illustrate, local, state, and national population health strategi es could emphasize the quality of life of people with advanced serious illnesses, promote palliative care in health professions education, provide assi stance to family caregivers, and ensure greater av ailability of bereavement services. Cross-Cutting Considerations is exceptionally important, palliative care As a clinical field in which communication lends itself to education approaches other th an didactic lectures. Simulation techniques, experiential learning, role playi ng (with or without outside acto rs), team-building exercises, interdisciplinary seminars, use of social me dia, journal or res earch clubs, and other nontraditional or supplemental methods of learni ng all may be appropriate in building students’ knowledge and skills. Educational approaches could include clerks hips and other placements in hospices or other palliative or long-term care set tings, interviews and conversations with patients and families, case studies involving unwanted or futile treatment, an opportunity to accompany a hospital chaplain on rounds, preparation and di scussion of research pa pers, telehealth or attitudes toward health care in a minority telemedicine demonstrations, and exploration of community. tive medicine calls lties, hospice and pallia Perhaps more than most other clinical specia on clinicians to be flexible and embrace uncertainty, especially in prognosis. Health care must respond in timely and basic or specialty palliative professionals involved in either ed path. Hospice and ectories take an unexpect appropriate ways when advanced disease traj palliative medicine’s focus on maximizing patient comfort and quality of lif e requires a different and often, considerable creativity. mind-set on the part of the care team, Lack of Interprofessional Collaboration The development of high-functioning teams of health professionals is receiving increased attention. Forms of collaboration include interprofessional , or multiple professions working , or multiple professions working together together toward a common goal, and transdisciplinary (IOM, 2013a). In this report, the term under a shared model with a common language mpasses the concept of transdisciplinary education. In these “interprofessional” education enco and other collaborative arrangements, physicians and other participating health professionals subordinate their own interests to the interests of the team and evince core humanistic values, such as honesty and integrity, car ing and compassion, altruism and empathy, respect for others, and trustworthiness (Swi ck, 2000; IOM, 2013a). Professional education can encourage or obstr uct interprofessional collaboration. It can eam-supporting attributes, foster team-building skills, such as communi cation, and important t such as trust and a focus on results. George Thibault, president of the Josiah Macy Jr. Foundation, suggested at a recent IOM workshop that team-based competencies should be a core workshop was the importance of goal of health professions e ducation, and a theme of that leadership, to effect such a leadership, including educational (IOM, 2013b). cultural change In reality, however, most health professions According to a Macy education is siloed. inculcates physicians with a ‘captain of the Foundation report, for example, “medical education ship’ attitude[,] which can impair interprofessi osiah Macy Jr. Foundation, onal collaboration” (J PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

212 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-11 PROFESSIONAL EDUCATION AND DEVELOPMENT eponderance of theory 2011, p. 6). Nursing education, too, is “very silo ed,” relying on a pr classes unconnected to practical realities (IOM, 2010, p. 20). According to authors of a nursing- oriented review of interprofessional educati on, “Despite some succe sses in educating the ively, the degree of interdisciplinary education at present is different disciplines collaborat the nursing curriculum, the content for teamwork is present, but insufficient and sporadic. Within ther is sparse” (Newhouse and Spring, 2010, p. 2). the evidence for education of disciplines toge Interprofessional collaboration is a key feature of palliative care, which, as emphasized in Chapter 2, is largely a team enterprise. Siloed education fosters attitudes that can lead team members to struggle over jurisdictional turf , misunderstand each ot her’s processes and objectives, fail to listen to or anticipate the concerns of ot her disciplines, avoid collective responsibility, and allow individual interests to interfere with patient and family interests. rather than individuals,” Palliative care training, by cont rast, “is oriented to teams e Care Leadership Centers, estab lished in 2004 through the Center to especially in Palliativ initial support from the Robe Advance Palliative Care with rt Wood Johnson Foundation. These 12 to eight types of health care settings, centers provide education programs geared followed by a ograms include a core program, consultancy- year-long mentoring program. The education pr based programs oriented to a developing or recen tly established palliative care program, and a fellowships in palliative care pediatrics program (CAPC, undate d). Further, interprofessional have been established by the VA as part of th at agency’s commitment to palliative care. Neglect of Communication Skills Clinicians’ skill in communicati ng with patients and families is a key aspect of end-of- discussed at length in Chapter 3. As a pair of life and palliative care, as noted in Chapter 2 and icians and students in the health s recently commented, “Foremost, clin palliative care expert mpetencies, especially communication training in basic palliative care co professions need better 2014, p. 1700). Research on health professionals’ communication skills” (Block and Billings, skills has focused primarily on physicians, for wh om the need may be greatest. This section ian communication skills, but the committee likewise focuses on the development of physic also is important for nurses and other health believes that the development of these skills professionals. Effective physician communication in end-of- life situations has been described as follows: ...good communication in palliative me dicine adopts a modern, patient- ork, and focuses on eliciting patient centered, biopsychosocial-spiritual framew information, but doing agenda, providing complete concerns, identifying their so in a way that allows patients and families to digest what they hear. It is ent, seeks to elicit patients’ goals and respectful, empathic, inclusive, and effici preferences, and to match these to an i ndividualized plan of care (LeBlanc and Tulsky, in press). 12 ers are integrated health systems, community hospitals, The eight types of settings used by the leadership cent Veterans Affairs (VA) ’s hospitals, Department of hospices, academic medical centers, cancer centers, children facilities, and safety-net hospitals (CAPC, undated). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

213 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 4-12 These authors also observe that “communication behaviors are readily measurable, teachable, and learnable” (LeBlanc and Tulsky, in press). Hospice and palliative medicine specialists are not alone in needing knowledge and skill in communicating with patients and families facing the end of life. Primary care clinicians, of course, but also oncologists, ca rdiologists, nephrol ogists, intensivists, emergency physicians, hospitalists, surgeons, and other clinicians must effectively so und out, listen, ask, inform, come to agreement, comfort, and in other ways achieve communication success with patients and family members as part of basi c palliative care. Even radiologists, anesthesiologists, pain communicate effectively with specialists have occasion to specialists, and physical medicine patients with advanced serious illnesses and their families. Nonetheless, physician shortcomings in communication, especially an apparent unwillingness to discuss the full range of treatment options for people with advanced serious illnesses, are well documented. According to Wright and colleagues (2008, p. 1672), “Physicians...often avoid EOL [end-of-life] c onversations, communicate euphemistically, are overly optimistic, or delay discussions until patien ts are close to death...” Interviews with 196 physicians caring for 70 patients who died in a hosp ital revealed that 86 pe rcent of the physicians reported knowing death was imminent, but only 11 percent reported pers onally speaking with et al., 2007). Shah and colleagues (2013) report patients about the possibility of dying (Sullivan do not discuss options with patients with that many cardiologists and primary care physicians heart failure, partly out of a fear of destroying hope. mmunication skills can be taught effectively A long line of studies has established that co to physicians at numerous points in their educational careers: rnal medicine residents to significant A communication intervention course led inte • ws (Alexander et al., 2006). improvements in delivering bad ne • A communication training cour se led oncology fellows to improvements in comfort rsations (Back et al., 2003). level and skill with difficult conve • Similarly, a course in teaching communi cation skills led medical school faculty members to greater comfort level and sk ill in teaching communication skills (Back et al., 2009). on skills led senior ourses in communicati Seminal U.K. research showed that c • and behavior in co oncologists to improvements in confidence mmunication, initially and at 3 and 12 months (Fa llowfield et al., 1998, 2002, 2003). Three weekly sessions with an expert facili tator and a simulated patient or caregiver • ralian hospitals to improvements in led “junior doctors” working in Aust communication skills and gr eater confidence in communi cating about end-of-life problems (Clayton et al., 2013). a medical intensive care unit rotation • A three-pronged approach led house officers in to improvements in confidence in conduc ting family conferences; delivering bad ders, comfort care, news; and discussing do-not-resuscitate or withdrawal of life- rectives (Seoane et al., 2012). sustaining treatment, and advance di • t- and second-year medical students at Instruction sessions on communication for firs the Warren Alpert Medical School of Brown University were rated highly by students unication skills and helping students gain for their effectiveness in enhancing comm ons (Shield et al., health care situati perspective on and appreciate the complexities of 2011). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

214 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-13 Although these results s how that good communication can be taught, there appears to be a dearth of medical faculty memb ers actually teaching the subject. To fill this deficit, faculty training programs in communication have emer ged. One such program is Oncotalk Teach, offered to oncology faculty through faculty retreats and distance learning (Back et al., 2009). In ecialties at a comprehensive cancer center another example, 33 physicians in diverse sp ths reported feeling participated in a communications workshop; afterward, three-four comfortable with facilitating training workshops in communica tion skills (Bylund et al., 2008). Nevertheless, the medical lite rature offers a paucity of information about medical schools’ efforts to redress stude nts’ communication di fficulties (Wiskin et al., 2013), and many relatively modest. They include, for example, two communication of these efforts appear to be udents at the Yale School of interventions for third-year st Medicine: a 3.5-hour workshop in communicating difficult news; and an assignment, including preparation of a written report, on communication and other problems in a single patient ’s end-of-life care as part of a clinical clerkship (Ellman and Fortin, 2012). Graduate medical education also does not typically emphasize development of communication skills. In a survey of 89 pediatric residents, fo r example, all but one said acquiring effective communication skills during their residency was a priority, but only 19 percent felt confident in discussing end-of-lif e issues with patients and families, 23 percent serious illness, and 27 percent felt confident in felt confident in speaking with children about giving bad news (Rider et al., 2008). not widely taught. To the Communication in the advance ca re planning context also is earn about advance care planning, th e topic typically is covered in extent that future physicians l up of researchers, “formal curricula on advance medical ethics courses, and according to one gro directives are not commonly offered by reside ncy programs.” These researchers conducted a survey of 59 internal medicine and family medi cine residents in Texas. Nearly half of the respondents said they did not have “sufficient kn owledge of advance directives, given my years ., 2010, p. 280). Some new approaches are emerging. For example, a of training” (Colbert et al facilitated quality improvement workshop for inte rnal medicine residents increased confidence not English proficie nt (Tung et al., 2013). with advance care planning for patients who were uding those related to cation challenges, incl Chapter 3 provides additional detail on communi advance care planning. LLIATIVE CARE TEAM MEMBERS ROLES AND PREPARATION OF PA members include physician specialis ts in hospice and palliative Palliative care team social workers, pharmacists, lists, hospice and palliative care medicine, palliative nursing specia e rehabilitation therapists, direct care workers, and chaplains. Others with important roles includ and family members. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

215 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-14 DYING IN AMERICA Physician Specialists in Hosp ice and Palliative Medicine For patients who receive speci alty (versus basic) palliative care, the hospice and palliative medicine specialist is responsible for managing all di agnostic and treatment services related to comfort and relief of symptoms. This role, although it differs somewhat from setting to setting, is comparable to that of the hospice medical director, who, under the Medicare Hospice 13 s patient care program.” Benefit, “has responsibility for the medical component of the hospice’ Because of their relatively low numbers, hos pice and palliative medicine specialists direct care providers. Despite this predominantly typically function as consultants rather than as consultative role, it appears reas onable, in the committee’s view, for patients who are referred to specialty palliative care services to expect to be seen by a qualified pallia tive care physician at some point, similar to the expectation when a patient enrolls in hospice. A personal encounter managed and is truly patient-centered. Even the can help reassure patients that care is being well ring (Verghese et al., 2011). Li kewise, personal encounters physician’s touch can be reassu tient’s condition and personality and thereby enhance physicians’ understanding of the pa potentially improve clinical deci sions and coordination of care. in hospice and palliative medi Following considerable growth cine training over the past decade, there were 107 accredited fellowship programs in 39 states plus the District of Columbia factors lead a physician to enter this in the 2014-2015 academic year (ACGME, 2014). What field? In a survey of 62 fellows conducted in July 2009, 63 percent said they did not feel bout the care they delivered. s, and 41 percent felt regret a prepared to manage dying patient d palliative medicine in medical school, While 59 percent had no exposure to hospice an 61 percent were exposed to it during reside ncy training (Legrand and Heintz, 2012). The increase in postgraduate training has been accompanied by changes in the seeking to demonstrate compet certification process for physicians ence in this field. In the 10- year period ending in 2006, the American Board of Hospice and Palliative Medicine certified more than 2,100 physicians (NHPCO, 2006). Then in September 2006, the new field received formal recognition when the American Board of Medical Specialties (ABMS) approved the medicine as a subspecialty. At that point, physicians certified creation of hospice and palliative by the previous, less formal process received “gra ndfathered” certification status for a period of MS examination has been offered every 2 years 10 years after their initial certification. The AB was 82 percent, and 3,368 candidates passed since 2008. In 2012, the examination pass rate (ABEM, 2013). Beginning in 2014, completion of an accredited hospice and palliative medicine ite for certification. fellowship is a prerequis dicine certification examination with the ABMS sponsors the hospice and palliative me participation of 10 certification boards. As Tabl e 4-1 shows, two boards—the American Board of can Board of Family Medicine —account for 88 percent of all Internal Medicine and Ameri lliative medicine about 6,400 hospice and pa certifications among a total complement of specialists. 13 42 Code of Federal Regulations 418.102(d). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

216 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-15 TABLE 4-1 Physicians Board-Certified in Ho spice and Palliative Medicine through the American Board of Medical Specialties, by Specialty Board, 2008-2012 Sponsoring Board Number Certified Percentage Internal Medicine 3,974 62 Family Medicine 1,631 26 Pediatrics 210 3 111 2 Anesthesiology 104 2 Psychiatry and Neurology Emergency Medicine 94 1 Obstetrics and Gynecology 68 1 Radiology 62 1 Surgery 62 1 Physical Medicine and Rehabilitation 40 1 TOTAL 6,356 100 McGreal, marketing and communications SOURCES: Personal communication, S. specialist, ABMS, February 4, 2014; ABIM, 2013d; ABFM, 2013; ABP, 2013; ABPN, 2013; ABS, 2013; ABPMR, 2013; ABEM, 2013. To ensure continuing competence, the ABMS certification must be renewed every 10 ments of continuing education, training, and examinations are years. The recertification require certifications. The recertificat similar to those of other ABMS ion examination, administered by the American Board of Internal Medicine on behalf of all 10 cosponsoring boards, is administered simultaneously to all eligible physicians. For osteopathic physicians, the American Os teopathic Boards of Family Medicine, Internal Medicine, Neurology and Psychiatry, and Physi cal Medicine and Rehabilitation offer a Certificate of Added Qualifica tion (and periodic recer tification) in hospice and palliative medicine. From 2009 to 2013, all doctors of oste opathy (DOs) who obtained board certification in any specialty were permitted to participate in the hospice and palliative medicine osteopathic four boards will be eligible. of 2014, only candidates from these certification examination, but as nd palliative medicine. This As of 2012, 174 DOs held osteopath ic certification in hospice a ists, 3 emergency physicians, 2 neurologist- figure comprises 118 family physicians, 48 intern psychiatrists, 2 surgeons, and 1 physical medi cine-rehabilitation speci alist (Gross and Bell, r ABMS certification. 2013). DOs also may qualify fo certified in hospice and pallia The total number of physicians tive medicine is not readily apparent. One source estimates there were 5,000 boa rd-certified hospice and palliative medicine specialists in 2013 (Quill and Ab ernathy, 2013), but as Table 4-1 re veals, the actual number was in computing an accurate total include the lack at least 25 percent higher. Complications entailed ied in the pre-2006 process have not yet been of data on how many physicians who became certif ss but are still practicing. Taken together, however, data from certified through the ABMS proce total of more than 6,500 board- certification process suggest a Table 4-1 and the osteopathic certified hospice and palliative medicine speciali sts in the United States. This figure amounts to about 0.8 percent of all practic ing U.S. physicians (KFF, 2014). rtification Board administered the first In May 2014, the Hospice Medical Director Ce certification exam directed explicitly at the unique clinical and administrative skills and prerequisite fellowship for this focused knowledge required in a hospice setting. With no icians who may work closely with hospices but certification, the aim is to raise the bar for phys rtiary training (HMDCB, 2013). are not seeking extensive te PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

217 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-16 DYING IN AMERICA One important dimension of the adequacy of the supply of hospice and palliative medicine specialists is race/ethnicity. The co mmittee did not find data on the racial/ethnic composition of the nation’s supply of board-certifi ed hospice and palliative medicine physicians. In the survey of 62 fellows noted at the beginni ng of this section, however, none were African American (Legrand and Heintz, 2012). Greater success in recruiting minority physicians into hospice and palliative medicine would likely make palliative care more attractive and accessible to minority patients and families (see Chapter 3) and would enhance cultural competence within the specialty. Hospice and Palliative Nursing Specialists Nurses play especially vital roles in care at the end of life. One impor tant role is serving as a patient advocate, ensuring that patients and families receive culturally sensitive care and sufficient pain management and relief of other symptoms (Hebert et al., 2011). A review of 44 articles from 10 countries found that hospital nurses ai d in the decision-making process near the end of life by serving as information brokers, supporters, and advocates , and have sets of strategies for accomplishing each of these roles. Additional research would aid in understanding how these roles and strategies li outcomes (Adams et al., 2011). nk to patient and family member The goal of hospice and palliative care nursing “...is to promote and improve the patient’s illness, through the death of the of suffering along the course of quality of life through the relief patient, and into the bereavement period of the family” (ANA and HPNA, 2007, p. 1; ANA, ses assess patients fo r their palliative care 2010b, p. 5). Palliative nurses who are registered nur needs, including relief of pain and other symptoms and spiritual and social needs. They manage symptoms such as pain, anorexia/cachexia, constipation, dehydration, nausea and vomiting, diarrhea, delirium, dyspnea, lymphedema, ascites (accumulation of excess fluid in the peritoneal cavity), pruritus (itching), various oral conditions, fatigue, and other conditions. Further, they coordinate care, anticipate and attend to emergencies, and pr ovide psychosocial care (Bruera et al., undated). Coordination, communication with families, collaboration, and patient advocacy n palliative care, in general (ANA, 2010a). all characterize nursing—i end-of-life care, and in liative care as offered by the ecialty certifications in pal Nursing has seven different sp iative Nurses, geared to different levels of National Board for Certification of Hospice and Pall nd experience. Nurses with the most training are the advanced education and areas of training a ecialists who linical nurse sp certified hospice and palliative nurses—nurse practitioners or c livered by physician specialists in hospice and palliative medicine. deliver care similar to that de However, state scope-of-practic e laws and regulations may impos e some restrictions on practice for these nurses, such as a requirement that advanced practice nurses have formal physician on nurses’ prescribing authority. backup protocols or strict limits hospice and palliative nursing The group with the least amount of training is the certified sistance with activities of daily living, under the assistants who provide bedside care, such as as lp implement care plans, identify . Certified nursing assistants he supervision of a registered nurse and family responses, and demonstrate other impacts on quality of life, document patient competencies (HPNA, 2009). rsing certification programs, which were Table 4-2 summarizes all seven palliative nu ce, they require continuing competen established between 1994 and 2004. To ensure ® recertification within 4 years (NBCHPN , 2014). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

218 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-17 PROFESSIONAL EDUCATION AND DEVELOPMENT Nursing Certifications in Palliative Care TABLE 4-2 Number Type of certification Eligibility Certified* 943 Advanced certified Master’s degree in nursing from an advanced practice palliative care accredited education program, or certain hospice and palliative nurse equivalences Certified hospice and License to practice registered nursing; 2 years of experience 11,878 palliative nurse in hospice or palliative care recommended Certified hospice and License to practice registered nursing; 2 years of experience 160 palliative pediatric nurse caring for children with life-limiting illnesses recommended Practical/vocational nursing license; 2 years of experience as Certified hospice and 1022 palliative licensed nurse a licensed practical nurse in hospice or palliative care recommended 2,000 practice hours in hospice or palliative care under Certified hospice and 3,843 supervision of a registered nurse in the past 2 years palliative nursing assistant Certified hospice and 2 years of full-time experience within the past 3 years in an 273 palliative care administrative role in an area covered by the examination, or administrator equivalent Certified in perinatal Professional degree (such as registered nurse) and 2 years of 62 loss care full-time experience in the past 3 years in perinatal loss care and/or bereavement support *Numbers certified are current as of April 2014. ® SOURCES: NBCHPN , 2014; Personal communication, S. L. Schafer, director of certification, ® NBCHPN , February 5, 2014. horitative roster of blished field. An aut Palliative nursing is an increasingly well-esta nursing education programs in palliative care lists 15 programs at the master’s or doctoral level, with the eastern, southern, mi dwestern, and western regions of the country each being o programs (HPNA, 2013). represented by at least tw Reflecting growth in the specialty, the Hosp ice and Palliative Nurses Association now claims 11,000 members, primarily hospice and palli ative nurses, such as certified hospice and palliative nurses. The association, the certificatio n board, and the Hospice and Palliative Nurses ce and Palliative Nursing, which Foundation have joined in the Al liance for Excellence in Hospi advocates on behalf of the field. The alliance’s concerns include patient access, ensuring patient choice, patient-centered interdisciplinary care , acknowledgment of the role of nurses, and and palliative nurses to practi ce to the full extent of their enabling advanced certified hospice training instead of being restricted by state sc ope-of-practice laws (Alliance for Excellence in actice concern is the low staffing levels in Hospice and Palliative Nursing, 2013). Another pr units that provide end-of-life care, which do tients’ spiritual and not take into account pa e at the time of death, and a of having a nurse at the bedsid emotional needs, the importance r a patient dies (Douglas, 2012). nurse’s need for some respite afte PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

219 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-18 DYING IN AMERICA Hospice and Palliative Care Social Workers The role of social workers in end-of-l ife care often focuses on self-determination, including bioethics consultation and advance ca re planning. Additional competencies include harge planning), case manageme nt (for care coordination), and resource linkage (such as disc ned about the end-of-life needs of vulnerable advocacy. Social workers are particularly concer individuals (NASW, 2004). They often are part of palliative care teams in hospitals, nursing homes, and hospices, and even may work in emergency departments (Lawson, 2012). Others work in social service agencies cial supports for patients and to provide community-based so come support, and enrollment in health plans. families, such as assistance with transportation, in In recent years, the profession of social work has developed standard s, certifications, and advanced levels of training for those provi approaching death: ding support to people • Since 2008, the National Association of Social Workers (NASW) has offered ve care at the level of advanced certified specialty certification in hospice and palliati social worker for licensed social workers who hold a hospice and palliative care master’s degree in social work, have at least 2 years’ experience in hospice and palliative care, and have ac quired at least 20 hours of re lated continuing education. • level of certified hospice a Since 2009, certification at the nd palliative care social worker has been available to licensed social workers who hold a bachelor’s degree in social work, have at least 3 years’ experi ence in hospice and palliative care, and have acquired at least 20 hours of re lated continuing education. These two credentials are among 18 advanced pract ice specialty credentials offered by NASW as of 2014. All require biannual renewal (NASW, 2014). Another organization, the Board of Oncology Soci al Work Certification, offers advanced specialty credentials for master’s degree so cial workers involved in oncology. While oncology encompasses a separate specialty from hospice a nd palliative care, this certification requires Oncology Social Work -life care (Board of experience in oncology, palliative care, or end-of Certification, 2014). eges and universities h in America, many coll Partly with support from the Project on Deat have developed specific courses and postdegree certificate programs for social workers in ). That project also was e (Walsh-Burke and Csikai, 2005 palliative and end-of-life car instrumental in establishing the Social Work Hospice and Palliative Care Network, an ongoing enterprise “created to bridge the gaps in social work’s access to information, knowledge, education, training, and research in hospice a nd palliative care” (Social Work Hospice and partly a product of two Social Work Summits Palliative Care Network, 2014). The network was in 2005 and 2006 (Blacker et al., undated). on End-of-Life and Palliative Care, held Many hospice and palliative care social worker s practice in hospice. Under the Centers for Medicare & Medicaid Services’ hospice conditi ons of participation, hospice social workers cial work; hold a bachelor’s degr must hold a master’s degree in so ee in social work and have 1 year of experience in a health care setting; or hold a bachelor’s degree in a related social of experience in a health care setting, and work under the science discipline, have 1 year work (CMS, 2008, Section er’s degree in social supervision of a social worker holding a mast tive care social workers, most reported 418.114(b)(3)). In a survey of 1,169 hospice and pallia being engaged in communicating the psychosocial needs of patients and families to other PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

220 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-19 members of the care team and in assessing patients’ and family members’ grief and bereavement needs; few held NASW certificat ion (Weisenfluh and Csikai, 2013). NASW’s Standards for Palliative and End of Life Care cover ethics and values; knowledge; assessment; intervention/treatment planning; attitude and self-awareness; empowerment and advocacy; documentation; interd isciplinary teamwork; cultural competence; continuing education; and supervision, leader ship, and training ( NASW, 2004). A major textbook in social work palliative care includes sections on specifi c settings of care, components t, intervention), population-spec of practice (screening, assessmen ific practice, collaboration, cs, and professional issu es (Altilio and Otis- “Regional Voices from a Global Perspective,” ethi Green, 2011). Pharmacists The role of pharmacists in pal liative care and hospice includes • assessing the appropriateness of medication or ders and helping to ensure the timely administration of effective medicine, • counseling and educating other palliativ e care team members about medication therapy, educating patients and family caregiver • s about the administration and use of medications, • mpounding of unusual medications, ensuring the availability of co addressing patient and family financia l concerns relating to medications, • • ensuring safe and legal disposal of medications after death, and ities as appropriate (ASHP, 2002). • communicating with regulatory author Given that symptom management for people wh o have advanced serious illnesses or are of medications, pharmacists can play a key role nearing the end of life relies heavily on the use in the interdisciplinary palliative care team. In 2002, a statement of the American Society of Health-System Pharmacists (ASHP) on the role of the pharmacy profession in hospice and ilities and scope of practice. Pharmacists, said palliative care highlighted pharmacists’ responsib the statement, have a pivotal role to play in improving pain management, including “patient specific monitoring for drug therapy outcomes, recommending alternative drug products and dosage forms, minimizing duplicative and inte racting medications, compounding medications extemporaneously, improving drug storage and trans portation, and educating staff, patients, and handling and using medications” (ASHP, 2002, families about the most efficient ways of p. 1772). do not require separate courses in end- Although pharmacy school accreditation standards ated with pain management and palliative care of-life care for pharmacy students, concepts associ therapy (ACPE, 2011). A 2012 survey of education are part of curriculum standards in pharmaco in pharmacy schools found an average of 6.2 hours de voted to teaching students about death and ickinson, 2013; Herndon et al., 2003). The 2012 dying, an increase from 3.9 hours in 2001 (D cent of pharmacy schools offered coursework on end-of-life care for survey also found that 82 per pharmacists. r a year-long post-graduate (PGY1) residency Pharmacy school graduates are eligible fo in pharmacy practice, community pharmacy, or managed care pharmacy. Individuals who wish PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

221 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-20 DYING IN AMERICA to gain further specialization can enroll in a s econd year of residency (P GY2). ASHP serves as the recognizing body for pharmaceutical residency pr ograms, a role that includes monitoring the s of PGY2 specialty In 2014, 26 distinct type implementation of the Resident Matching Program. programs were available, including one in pain ma nagement and palliative care. Within this one specialty, 11 individual programs are available in the United States . Most of these programs offer only one position per program, so a total complement of only 13 pain management and palliative care positions was available during the 2014 match (National Matching Services, 2014). However, pharmacists need not complete a pain management and palliative care residency program to work in palliative care. A recent surv ey of pharmacists in that field found that only and just 5 percent had completed a PGY2 23 percent had completed a PGY1 residency, residency (Latuga et al., 2012). certification in eight specialties, as well The Board of Pharmacy Specialties (BPS) offers as two areas that provide an Added Qualif ication credential. As recently as 2011, BPS tive medicine as a specialty, but considered adding pain and pallia it has yet to do so (BPS, 2011). Chaplains Chaplaincy services tend to be the most visi ble means of meeting th e spiritual care needs of patients with advanced serious illnesses. Spir itual care is one of eight domains of quality sus Project for Quality Palliative Care (Dahlin, palliative care identified by the National Consen 2013), and accreditation sta ndards require hospitals and home h ealth agencies to accommodate all patients’ religious and spiritua l needs (The Joint Commission, 2008). 14 Although spiritual care can be provided by physicians, nurses, social workers, other medicine, and lay people, it is the special domain of chaplains. clergy, practitioners of integrative In health care institutions, chaplains typica lly strive to serve people of many different denominations. Chaplains perform spiritual assessments of patients and families, formulate spiritual treatment plans, consult with othe r palliative care team members or outside clergy to ensure that spiritual needs are adequately met, and provide direct services to patients and families. A care developed a set of recommendations that consensus conference on spiritual palliative iritual distress, and timely access to chaplaincy emphasizes spiritual assessment, responses to sp services (Puchalski et al., 2009). with palliative care About two-thirds of U.S. hospitals have chap lains, and in hospitals programs, their duties may include serving pall iative care patients. Hospital chaplains conduct tening along with life review and emotional spiritual assessments; provide empathetic lis assistance; and when asked, lead prayer and relig ious observances (Jankowski et al., 2011). As one example of the scope of services that may be provided, a chaplaincy program at the Methodist Hospital System in Houston trains staff in the system’s spiritual environment of caring services to patients, and conducts community and when to call in a chaplain, provides direct outreach (Millikan, 2013). ho died between 2001 and 2005, the presence In a nationwide study of hospital patients w of chaplaincy services was associated with a 4 percent lower rate of hospital mortality and a geographic variables, hospital enrollment, after controlling for 6 percent higher rate of hospice 14 In a 2005 survey of 363 family medicine residents, 96 percent agreed (and 60 percent of these strongly agreed) they would discuss spirituality with a patient on request (Saguil et al., 2011). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

222 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-21 status, and presence of a palliative care type and size, population density, socioeconomic program (Flannelly et al., 2012). A study of family members of 284 deceased resi dents of long-term care facilities in four sidents had received spiritual car e from one source or another. states found that 87 percent of re Family members of residents who did receive spir itual care rated the quality of care received in family members (Daaleman et al., 2008; see also the last month of life higher than did other may be that the privacy provisions of the Daaleman, 2010). One impediment to spiritual care Health Insurance Portability a nd Accountability Act of 1996 app ear to exclude spiritual and religious healing from the definition of health care. As a result, clergy who are not on a hospital (or nursing home) staff cannot readily determine wh ich of their congregants are patients there (Tovino, 2005). Chaplaincy services are a required element of hospice care under the Medicare Hospice Benefit. Hospice and palliative m the role of clergy for people care chaplains sometimes perfor gular religious affiliation (Vitello, 2008). near the end of life who do not have a re cy Certification Inc., an affiliate of the Chaplains are certified by the Board of Chaplain s. This workforce appears small compared 4,500-member Association of Professional Chaplain with the potential need. The gene ral certification examination cove rs 29 areas of competency and ied chaplain (BCC) and associat e certified chaplain (ACC). Both exists on two levels: board certif levels require an undergraduate degree, ordinatio n or commission to function as a chaplain, a letter of endorsement from a recognized fa ith group, and 2,000 hours of work experience. in a graduate theological program and four Additional BCC qualifications are 72 credit hours units of clinical pastoral e ducation. Additional ACC qualifica tions are 48 credit hours in a ducation (BCCI, 2013). clinical pastoral e graduate theological program and two units of Specialty certification in palliative care (BCC-PCC) was introduced in 2013 as the first in an expected series of specialty chaplaincy certifications. Part of the purpose of palliative care ecome fully recognized and functioning members of specialty certification is to help chaplains b palliative care teams (APC, 2013). Other Roles Rehabilitation Therapists itation therapists are active in the care of people with Several categories of rehabil advanced serious illnesses, including palliative care: • Occupational therapists help patients pe rform activities of daily living by dressing, st with instrumental activities of daily bathing, and ensuring safety. They further assi on and home management. They living through meal preparati facilitate rest and sleep, play, and social and family interaction (AOTA, 2011). • Physical therapists provide services involving home safety, pain management, caregiver education, patient positioning, training in the use of medical equipment, strengthening, balan ce reeducation, gait energy conservation, breathing techniques, scharge planning (Cruz, 2013). training, transfer training, and di Speech-language pathologists help relieve communication impairments and • swallowing difficulties (Pollens, 2004). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

223 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-22 DYING IN AMERICA Direct Care Workers According to an IOM report on workforce n eeds for an aging population, direct care workers “...are the primary providers of paid hands-on care, supervision, and emotional support 15 Direct care workers often provide for older adults in the Un ited States” (IOM, 2008, p. 199). assistance with activities of da ily living and serve the patient at the bedside morning, noon, and night in nursing homes, private homes, and othe r nonhospital settings. The category of direct health aides, and personal care aides. care workers consists of nursing assistants, home Direct care is not establis hed as a profession, and work ers often are foreign born essential health care personnel. (23 percent in 2010) and constitute an almost invisible corps of In 2008, there already were more than 3 million direct care workers, and a workforce of 4.3 million is forecast for 2018—a projected increase of more than 40 percent in 10 years (PHI, 2011). About 90 percent are women, and 45 percent are African American or Hispanic (IOM, 2008). Many direct care workers are employed by nursing homes, hospices, home health ities, and others are hired by families and paid agencies, or continuing care residential commun Because pay rates are low and many jobs are out of pocket for services provided in the home. care workers are eligible for public assistance. A recent Labor part-time, nearly half of direct Department regulation would bring direct care workers under minimum wage legislation (Lopez, training requirements for nursing 2013). The federal government sets assistants and home health aides who work in nursing homes and home h ealth agencies certified for Medicare and Medicaid. For other types of dir ect care workers, states may se t requirements (PHI, 2011). Under the Affordable Care Act, nursing homes are requi red to provide in-servi ce training to nursing assistants on dementia and resident abuse (CMS, 2011). Given low pay rates and other negative aspe cts of many direct care jobs, as well as projected increases in demand a ssociated with the aging populat ion, the IOM report cited above d fringe benefits. It recommends that state Medicaid programs increas e direct-care pay rates an ng standards, including also recommends state and federal action to increase minimum traini establishment of 120 hours of training (compare d with the current 75 hours) as a minimum requirement (IOM, 2008, Recomme ndations 5-1 and 5-2). Family Members Family members, even those who may not be fully engaged as family caregivers, play vital roles on the palliative car e team. They support the patient. They advocate for the patient to ensure that needs are being met and obvious errors are avoi ded. They assist with medication acquisition and administration, especially in hom e-based care. They inform professional care ences and personal traits. They c team members about patient prefer ontribute to, and help patients ing implemented. And they participate in understand, the treatment plan and how it is be transitions from one setting to another. As desc ribed in Chapter 2, family caregivers (with the palliative care t “family” defined broadly) have a dual presence on eam, both serving as the and requiring support services themselves. main provider of services from hour to hour 15 some other uses of the term. In other contexts, the term The term “direct care worker” in this context differs from may cover not just aides but also many nurses and other health professionals who provide services to patients directly, rather than through consultations, administration, or other indirect ways. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

224 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-23 PROFESSIONAL EDUCATION AND DEVELOPMENT FINDINGS, CONCLUSIONS , AND RECOMMENDATION Findings This study yielded the following findings on creating change in professional education to improve the quality of end-of-life care. Growth of Palliative Care Specialties (IOM, 1997) was published, hospice and Since the IOM report Approaching Death palliative medicine has become established as a defined medical specia lty, with 10 cosponsoring tification of added qualification in four osteopath ic specialties. certification boards, and as a cer ard certified in this As a result, more than 6,500 physicians are now bo specialty. Certification programs in palliative care also have been esta blished for seven levels of nursing, two levels of 16,17 social work, and chaplaincy (ABEM, 2013; ABFM, 2013; ABIM, 2013d; ABMS, 2012; ABP, 2013; ABPN, 2013; ABS, and Bell, 2013; NASW, 2014; 2013; APC, 2013; Gross ® , 2014). NBCHPN Palliative Care in the Curriculum to cover end-of-life care, but the average In medical schools, the curriculum is required total offering is only 17 hours over the 4 years, and there usually is no required course. ired to include end- Baccalaureate nursing programs are similarly requ of-life care, but the average total offering was most recently determined to be less than 15 hours (AACN, 2008; Dickinson, 2007, 2011; Liaison Committee on Medica l Education, 2013; Van Aalst-Cohen et al., 2008). Palliative Care Content in Medical Licen sure and Certification Examinations Palliative care content in me dical licensure and non-hospi ce and palliative medicine certification examinations appears limited. Pallia tive and end-of-life ca re is not among the 15 areas blueprinted for Step 3 of the United Stat es Medical Licensing Examination. End-of-life ent of the oncol care and communication acc ount for only 2 percent of the cont ogy certification examination. The entire subject of “ethics, ma lpractice, other”—whi ch conceivably could include some aspects of palliative care—accoun ts for only 0.5 percent of the content of the cardiovascular recertific ation examination (ABIM, 2013a,b; United States Medical Licensing Examination, 2013). Continuing Education in Palliative Care ve care includes two well-esta blished programs that use a Continuing education in palliati ve and End-of-life Care (EPEC), primarily for train-the-trainer approach: Education in Palliati the End-of-Life Nursi physicians and advanced practice nurses, and ng Education Consortium 2013a; EPEC, 2013b; ELNEC, 2013). (ELNEC) for nurses (CAPC, 16 Personal communication, S. McGreal, marketing and communications specialist, ABMS, February 4, 2014. ® 17 , February 5, 2014. Personal communication, S. L. Schafer, director of certification, NBCHPN PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

225 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 4-24 Supply of Hospice and Palliative Medicine Specialists A shortage of 6,000-18,000 hospice and palliati ve medicine speci alists has been estimated. This estimate is based on assumpti ons involving hospital-based services only (Lupu and American Academy of Hospice and Pallia tive Medicine Workfo rce Task Force, 2010). Professions and Other Groups Providing Palliative Care iative medicine (both hospice and pall Palliative care providers include physicians provide basic palliative care); nurses (including advanced certified specialists and clinicians who nonpalliative nurses); hospice and palliative nurses, ce rtified hospice and pall iative nurses, and social workers (including advanced certified hospice a nd palliative care social workers and certified hospice and palliative care social workers); pharmacists ; chaplains ; rehabilitation ists, and speech-language pathologists); direct therapists (physical therapists, occupational therap family des, and personal care aides); and (nursing assistants, home health ai care workers (ABMS, 2012; ANA and HPNA, 2007; AOTA, 2011; ASHP, 2002; Cruz, 2013; members 2012; Lawson, 2012; PHI, 2011; Pollens, 2004; HPNA, 2009; IOM, 2008; Latuga et al., Csikai, 2013; see also Chapter 2). Puchalski et al., 2009; Weisenfluh and Conclusions The major improvement in the education of health professionals who provide care to people nearing the end of life has been the es tablishment of the sp ecialty of hospice and palliative medicine, along with the establishment or growth of palliative care specialties in ining problems are insufficient at nursing and social work. Three rema tention to palliative care in medical and nursing school curricula, educati onal silos that impede the development of ssibly nurses and other interprofessional teams, and deficits in equi pping physicians (and po fficient communication skills. health professionals) with su To serve patients who are not currently hospita lized or do not require specialty palliative care (and their families), there is a need for “basic” or “primary” palliative care. As defined in ians who are not hospice and Chapter 1 (Box 1-2), basic palli ative care is provided by physic palliative medicine speciali ts, family physicians, general sts (such as general internis pediatricians, oncologists, car diologists, nephrologists, hospi talists, emergency physicians, ), along with colleagues in other health anesthesiologists, intensivists, physiatrists, and surgeons ribute to a general inadequacy in preparing professions. The three problems noted above cont de basic palliative care. health professionals to provi Recommendation ng boards, state regulatory agencies, and tialing bodies, accrediti Educational institutions, creden health care delivery organizations training, certification, and/or should establish the appropriate en the palliative care knowledge and skills of all clinicians who licensure requirements to strength ng the end of life. illness who are neari care for individuals with advanced serious Specifically, PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

226 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-25 • all clinicians across disciplines and specialti es who care for people with advanced serious illness should be competent in basic pallia tive care, including communication skills, interprofessional collaborati on, and symptom management; • educational institutions and pr ofessional societies should provid e training in palliative care domains throughout the professional’s career; accrediting organizations, such as the Accred itation Council on Graduate Medical Education, • care education and clini cal experience in progra ms for all specialties should require palliative lness (including prim responsible for managing advanced serious il ary care clinicians); • certifying bodies, such as the medical, nursing, and social work specialty boards, and health systems should require knowledge, skills, and competency in palliative care; state regulatory agencies should include educatio liative care in licensure n and training in pal • cial workers, and others who provide health requirements for physicians, nurses, chaplains, so the end of life; care to those nearing entities that certify specialty-level health care providers should create pathways to • onals who pursue specialty-level number of health care professi certification that increase the palliative care training; and nizations, academic medical centers, and teaching entities such as health care delivery orga • ng positions should commit institutional resources hospitals that sponsor specialty-level traini to increasing the number of available training positions for specialty-level palliative care. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

227 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 4-26 REFERENCES AACN (American Association of Colleges of Nursing). 2008. The essentials of baccalaureate education for professional nursing practice . Washington, DC: AACN. https://www.aacn.nche.edu/education- resources/BaccEssentials08.pdf (accessed February 10, 2014). AAMC (Association of American Medical Colleges). 2013. Medical school graduation questionnaire. 2013 all schools summary report . https://www.aamc.org/download/350998/data/20 13gqallschoolssummaryreport.pdf (accessed March 17, 2014). Number of accredited programs duate Medical Education). 2014. ACGME (Accreditation Council for Gra . Chicago, IL: ACGME. for the current academic year (2014-2015), United States https://www.acgme.org/ads/Public/Reports /Report/3 (accessed April 14, 2014). ACPE (Accreditation Council for Pharmacy Education). 2011. Accreditation standards and guidelines for the professional program in pharmacy leading to the doctor of pharmacy degree . Chicago, IL: ACPE. https://www.acpe-accredit.org/pdf/FinalS20 07Guidelines2.0.pdf (accessed January 27, 2014). ABEM (American Board of Emergency Medicine). 2013. Annual report, 2012-2013 . East Lansing, MI: lt-source/publication-documents/2012-13-annual- ABEM. https://www.abem.org/public/docs/defau report.pdf?sfvrsn=8 (accessed January 31, 2014). ABFM (American Board of Family Medicine). 2013. . Lexington, KY: ABFM. Diplomate statistics https://www.theabfm.org/about/stats. aspx (accessed December 4, 2013). Medical oncology: Certification examination ABIM (American Board of Internal Medicine). 2013a. . Philadelphia, PA: ABIM. http://www.abim .org/pdf/blueprint/medon_cert.pdf (accessed blueprint November 29, 2013). ABIM. 2013b. . Philadelphia, Cardiovascular disease: Maintenance of certification examination blueprint PA: ABIM. http://www.abim.org/pdf/blueprint/ card_moc.pdf (accessed November 29, 2013). . Philadelphia, PA: ABIM. ABIM. 2013c. Internal medicine: Certification examination blueprint http://www.abim.org/pdf/blueprint/im_cer t.pdf (accessed November 29, 2013). . Philadelphia, PA: ABIM. Number of certificates issued—all candidates ABIM. 2013d. all-candidates.pdf (accessed December 3, 2013). http://www.abim.org/pdf/data-candidates-certified/ . Chicago, IL: 2012 ABMS certificate statistics ABMS (American Board of Medical Specialties). 2012. ABMS. Number of diplomate certificates granted through December ABP (American Board of Pediatrics). 2013. 2012 . Chapel Hill, NC: ABP. l%3D%2FABPWebStatic e=0.1225979424765275#mur https://www.abp.org/ABPWebStatic/?anticach %2FaboutPed.html%26surl%3D%2Fa bpwebsite%2Fstats%2Fnumdips.h tm (accessed December 3, 2013). ABPMR (American Board of Physical Medicine and Rehabilitation). 2013. Examination statistics. Rochester, MN: ABPMR. https://www.abpmr.org/candidates/exam_statistics.html (accessed December 3, 2013). ABPN (American Board of Psychiatry and Neurology, Inc.). 2013. . Buffalo Initial certification statistics Grove, IL: ABPN. http://www.abpn.com/cert_statis tics.html (accessed December 4, 2013). . Philadelphia, PA: ABS. ABS (American Board of Surgery). 2013. Diplomate totals summary (accessed December 3, 2013). http://www.absurgery.org/default.jsp?stat Adams, J. A., D. E. Bailey, Jr., R. A. Anderson, and S. L. Docherty. 2011. Nursing roles and strategies in Nursing Research end-of-life decision making in acute care: A systematic review of the literature. and Practice 527834. Tulsky. 2006. A controlled trial of a short course to Alexander, S. C., S. A. Keitz, R. Sloane, and J. A. 81(11):1008- Academic Medicine improve residents’ communication with patients at the end of life. 1012. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

228 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-27 PROFESSIONAL EDUCATION AND DEVELOPMENT ce and Palliative Nursing. 2013. Comments submitted by the Hospice and Alliance for Excellence in Hospi Palliative Nurses Association to the Institute of Medicine (IOM) Committee on Transforming Care at the End of Life . Pittsburgh, PA: HPNA. The Oxford textbook of palliative social work. Cary, NC, and Altilio, T., and S. Otis-Green, eds. 2011. New York: Oxford University Press. American Pharmacists Association. 2012. FDA approves final ER/LA opioid analgesic REMS . Washington, DC: American Pharmacists Association. http://www.pharmacist.com/fda-approves-final- erla-opioid-analgesic-rems (accessed November 25, 2013). ANA (American Nurses Association). 2010a. Nursing’s social policy st atement: The essence of the . Silver Spring, MD: ANA. profession ANA. 2010b. providing expert care and counseling at the Registered nurses’ roles and responsibilities in end of life . Position statement. Silver Spring, MD: ANA. ANA and HPNA. 2007. Hospice and palliative care nursing: Scope and standards of practice . Silver Spring, MD: ANA. The role of occupational therapy in AOTA (American Occupational Therapy Association). 2011. . Bethesda, MD: AOTA. palliative care http://www.aota.org/~/media/Corporate/Files/About OT/Professionals/WhatIsOT/PA/Facts/FactSheet _PalliativeCare.ashx (accessed August 24, 2013). APC (Association of Professional Chaplains). 2013. The Association of Professional Chaplains introduces palliative care specialty certification . News release. May 1. Schaumburg, IL: APC. r_palliative_care_specialty_certification.pdf http://www.professionalchaplains.org/Files/news/p (accessed August 6, 2014). ASHP (American Society of Health-System Pharm acists). 2002. ASHP statement on the pharmacist’s role in hospice and palliative care. 59:1770-1773. American Journal of Health-System Pharmacy Back, A. L., R. M. Arnold, J. A. Tulsky, W. F. Baile, and K. A. Fryer-Edwards. 2003. Teaching communication skills to medical oncology fellows. Journal of Clinical Oncology 21(12):2433-2436. Back, A. L., R. M. Arnold, W. F. Baile, J. A. Tulsky, G. E. Barley, R. D. Pea, and K. A. Fryer-Edwards. 2009. Faculty development to change the paradigm of communication skills teaching in oncology. Journal of Clinical Oncology 27(7):1137-1141. BCCI (Board of Chaplaincy Certification Inc). 2013. BCCI certification . Schaumburg, IL: APC. http://bcci.professionalchaplains.org/content.asp?p l=25&contentid=25 (accessed December 3, 2013). S. medical schools: A systematic literature review. Bickel-Swenson, D. 2007. End-of-life training in U. Journal of Palliative Medicine 10(1):229-235. Charting the course for the future of social work in end- Blacker, S., G. H. Christ, and S. Lynch. undated. nd of-life and palliative care: A report on the 2 Social Work Summit on End-of-life and Palliative Care. The Social Work in Hospice and Palliative Care Network . http://www.swhpn.org/monograph.pdf (accessed January 31, 2014). Block, S. D., and J. A. Billings. 2014. A need for scalable outpatient palliative care interventions. Lancet [Epub ahead of print]. BPS (Board of Pharmacy Specialties). 2011. BPS approves ambulatory care designation; explores new specialties in pain and palliative care, critical care and pediatrics . Washington, DC: BPS. http://www.bpsweb.org/news/pr_041911.c fm (accessed January 24, 2014). Board of Oncology Social Work Certification. 2014. Oncology Social Work Certification (OSW-C) requirements . http://oswcert.org/?page_id=161 (accessed April 14, 2014). . 2009 . . Bruera, E., L. Higginson, C. Ripamonti, and C. von Gunten, eds Textbook of palliative medicine London, England: Hodder Arnold. MD Anderson’s guide to Schuren, and K. Swint, eds. undated. Bruera, E., M. T. San-M. Arregui, N. L. . Houston, TX: The University of Texas MD Anderson supportive and palliative care for nurses Cancer Center. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

229 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 4-28 Bylund, C. L., R. F. Brown, B. L. di Ciccone, T. T. Levin, J. A. Gueguen, C. Hill, and D. W. Kissane. 2008. Training faculty to facilitate communication sk ills training: Development and evaluation of a workshop. Patient Education and Counseling 70(3):430-436. Callahan, M. F., S. Breakwell, and R. Suhayda. 20 11. Knowledge of palliative and end-of-life care by student registered nurse anesthetists. American Association of Nurse Anesthetists Journal 79(4):S15- S20. CAPC (Center to Advance Palliative Care). 2013a. Education for Physicians on End-of-life Care (EPEC). New York: CAPC. http://www.capc.org/palliative-care-professional- development/Training/education-for-physicians-on- end-of-life-care-epec (accessed November 25, 2013). CAPC. 2013b. Program model options chart . New York: CAPC. http://www.capc.org/building-a- hospital-based-palliative-care-program/designing/ch aracteristics/program-model-chart (accessed September 5, 2013). Staffing a palliative care program CAPC. 2014. . New York: CAPC. http://www.capc.org/building-a- hospital-based-palliative-care-program/implement ation/staffing (accessed January 26, 2014). CAPC. undated. Palliative Care Leadership Centers: PCLC overview . New York: CAPC. http://www.capc.org/palliative-care-le adership-initiative/overview (acce ssed November 30, 2013). Palliative care for infants, children, and Carter, B. S., M. Levetown, and S. E. Friebert, eds. 2011. 2nd ed. Baltimore, MD: The Johns Hopkins University Press. adolescents: A practical handbook. Saving lives and protecting people: Preventing CDC (Centers for Disease Control and Prevention). 2013. prescription painkiller overdoses . http://www.cdc.gov/injury/about/f ocus-rx.html (accessed February 11, 2014). Clayton, J. M., P. N. Butow, A. Waters, R. C. Laidsaa r-Powell, A. O’Brien, F. Boyle, A. L. Back, R. M. Evaluation of a novel individualized communication Arnold, J. A. Tulsky, and M. H. Tattersall. 2013. skills training intervention to improve doctors’ c onfidence and skills in end-of-life communication. Palliative Medicine 27(3):236-243. Conditions of participation: Hospice care CMS (Centers for Medicare & Medicaid Services). 2008. (418.3-418.116) . http://www.cms.gov/Regulations-and- Guidance/Legislation/CFCsAndCoPs/Hospi ce.html (accessed January 16, 2014). CMS. 2011. Mandate of Section 6121 of the Affordable Care Act for nurse aide training in nursing . http://www.cms.gov/Medicare/Provider-Enrollment-and- homes nloads/SCLetter11_35.pdf (accessed December 4, Certification/SurveyCertificationGenInfo/dow 2013). C. Cable, J. D. Myers, A. R. Ownby, E. Boisaubin, Colbert, C. Y., C. Mirkes, P. E. Ogden, M. E. Herring, I. Murguia, M. A. Farnie, and M. Sadoski. 2010. Enhancing competency in professionalism: Targeting resident advance directive education. Journal of Graduate Medical Education 2(2):278- 282. Cruz, M. L. 2013. Patient-centered care: How physical therapy can help patients who need palliative care. Advance Health Care Network fo . http://physical- r Physical Therapy and Rehab Medicine ered-Care.aspx (accessed August 24, 2013). therapy.advanceweb.com/Features/ Articles/Patient-Cent . Daaleman, T. 2010. Families rank end-of-life care hi gher when spiritual care received asp (accessed December 3, 2013). http://www.nacc.org/vision/May_June_2010/ru. Daaleman, T. P., C. S. Williams, V. L. Hamilton, and S. Zimmerman. 2008. Spiritual care at the end of 46(1):85-91. Medical Care life in long-term care. . 3rd ed. Pittsburgh, PA: Clinical practice guidelines for quality palliative care Dahlin, C., ed. 2013. National Consensus Project for Quality Palliative Care. ctice_Guidelines_3rd_E dition.pdf (accessed http://www.hpna.org/multimedia/NCP_Clinical_Pra December 3, 2013). e issues in medical and nursing schools in the United Dickinson, G. E. 2007. End-of-life and palliative car States. 31(8):713-726. Death Studies PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

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231 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-30 DYING IN AMERICA Horowitz, R., R. Gramling, and T. Quill. 2014. Palliative care education in U.S. medical schools. Medical Education 48(1):59-66. HPNA (Hospice and Palliative Nurses Association). 2009. Hospice and palliative nursing assistant competencies . Pittsburgh, PA: HPNA. https://www.hpna.o rg/PicView.aspx?ID=287 (accessed January 31, 2014). HPNA. 2013. Graduate program listing . Pittsburgh, PA: HPNA. duate%20Program%20Listing (accessed January http://www.hpna.org/DisplayPage.aspx?Title=Gra 24, 2014). Approaching death: Improving care at the end of life. Washington, IOM (Institute of Medicine). 1997. DC: National Academy Press. IOM. 2003. When children die: Improving palliative and end- of-life care for children and their families. Washington, DC: The National Academies Press. IOM. 2008. Retooling for an aging America: Building the healthcare workforce. Washington, DC: The National Academies Press. IOM. 2010. A summary of the February 2010 Forum on the Future of Nursing Education: Workshop summary. Washington, DC: The National Academies Press. ansforming prevention, care, education, and Relieving pain in America: A blueprint for tr IOM. 2011. Washington, DC: The National Academies Press. research. for improving health outcomes: Workshop Establishing transdisciplinary professionalism IOM. 2013a. summary. Washington, DC: The National Academies Press. Learning how to improve health from Interprofessional education for collaboration: IOM. 2013b. of education to practice: Workshop summary. interprofessional models across the continuum Washington, DC: The National Academies Press. nnelly. 2011. Testing the efficacy of chaplaincy care. Jankowski, K. R. B., G. F. Handzo, and K. J. Fla Journal of Health Care Chaplaincy 17:100-125. Josiah Macy Jr. Foundation. 2011. Ensuring an effective physician workforce for the United States: Recommendations for reforming graduate medical e ducation to meet the needs of the public—the second of two conferences—the content and format of GME . New York: Josiah Macy Jr. Foundation. http://macyfoundation.org/docs/macy_pubs/Macy_GME_Report,_Aug_2011.pdf (accessed November 30, 2013). KFF (The Henry J. Kaiser Family Foundation). 2014. State health facts: Total professionally active ive-physicians/ (accessed March 11, 2014). . http://kff.org/other/state-indicator/total-act physicians Knapp, C. A., V. Madden, H. Wang, K. Kassing, C. Curtis, P. Sloyer, and E. A. Shenkman. 2009. Paediatric nurses’ knowledge of palliative care in Florida: A quantitative study. International Journal of Palliative Nursing 15(9):432-439. Knapp, C. A., V. Madden, H. Wang, K. Kassing, C. Curtis, P. Sloyer, and E. A. Shenkman. 2011. Journal of Pediatric nurses’ attitudes toward hospice and pediatric palliative care. Pediatric Nursing 37(3):121-126. Kolarik, R. C., G. Walker, and R. M. Arnold. 2006. Pediatric resident education in palliative care: A needs assessment. Pediatrics 117(6):1949-1954. Latuga, N. M., R. G. Wahler, and S. V. Monte. 2012. A national survey of hospice administrator and the impact on medication requirements and cost. pharmacist perspectives on pharmacist services and American Journal of Hospice and Palliative Care 29(7):546-554. Lawson, R. 2012. Palliative social wo Journal of Social Work in End of rk in the emergency department. 8(2):120-134. Life and Palliative Care Oxford LeBlanc, T. W., and J. A. Tulsky. In press. Communication with the patient and family. In Textbook of Palliative Medicine , 5th ed., edited by N. Cherney, M. Fallon, S. Kaasa, R. Portenoy, and Oxford University Press. D. Currow. Oxford, England: dicine fellowship: A study of resident choices. Legrand, S. B., and J. B. Heintz. 2012. Palliative me 43(3):558-568. Journal of Pain and Symptom Management PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

232 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-31 Leipzig, R. M., L. Granville, D. Simpson, M. B. Anderson, K. Sauvigne, and R. P. Soriano. 2009. Keeping granny safe on July 1: A consensus on minimum geriatrics competencies for graduating medical students. Academic Medicine 84(5):604-610. Leong, L., J. Ninnis, N. Slatkin, M. Rhiner, L. Schr oeder, B. Pritt, J. Kagan, T. Ball, and R. Morgan. M) education on physician practice patterns: A 2010. Evaluating the impact of pain management (P continuing medical education (CME) outcomes study. 25(2):224-228. Journal of Cancer Education Liaison Committee on Medical Education. 2013. Functions and structure of a medical school: Standards for accreditation of medical education programs leading to the M.D. degree . Chicago, IL: American Medical Association, and Washington, DC: Association of American Medical Colleges. https://www.lcme.org/publications/functions201 3june.pdf (accessed November 26, 2013). Liao, J. M. 2014. Speaking up about the dangers of the hidden curriculum. 33(1):168-171. Health Affairs iatric palliative care: Challenges and emerging ideas. Liben, S., D. Papadatou, and J. Wolfe. 2008. Paed Lancet 371(9615):852-864. Lopez, R. 2013. Minimum wage, overtime protections extended to direct care workers. Los Angeles Times , September 17. http://www.latimes.com/business/money/la-fi-mo-direct-care-workers-labor- accessed September 18, 2013). rules-20130917,0,4108023.story ( Lupu, D., and American Academy of Hospice and Palliative Medicine Workforce Task Force. 2010. Estimate of current hospice and palliative medicine physician workforce shortage. Journal of Pain and Symptom Management 40(6):899-911. Lupu, D., C. Deneszczuk, T. Leys tra, R. McKinnon, and V. Seng. 2013. Few U.S. public health schools Journal of Palliative Medicine offer courses on palliative and end-of-life care policy. 16(12):1582- 1587. G. Uman. 2006. Palliative care education for pediatric Malloy, P., B. Ferrell, R. Virani, K. Wilson, and Journal of nurses. 32(6):555-561. Pediatric Nursing Mansouri, M., and J. Lockyer. 200 7. A meta-analysis of continuing medical education effectiveness. Journal of Continuing Educa tion in the Health Professions 27(1):6-15. Matzo, M., and D. W. Sherman. 2010. Palliative care nursing: Quality care to the end of life. 3rd ed. New York: Springer Publishing. http://books.google.com/books?hl=en&lr=&id=rT exGiX5bqoC&oi=fnd&pg= PR7&dq=advanced+pr e+education+programs&ots=cH actice+nurse+hospice+palliativ xHd5Md19&sig=M_IPplucY4ROMO %20hospice%20palliative%20educa =advanced%20practice%20nurse Xs9z6Zg8b6_lU#v=onepage&q tion%20programs&f=false (accessed December 2, 2013). End of life/palliative education resource center: Advancing end- Medical College of Wisconsin. undated. of-life care through an online community of educational scholars . Milwaukee, WI: Medical College RC.htm (accessed January 25, 2014). of Wisconsin. http://www.eperc.mcw.edu/EPE Meyer, E. C., D. E. Sellers, D. M. Browning, K. McGuffie, M. Z. Solomon, and R. D. Truog. 2009. ills and relational abilities in health care. Difficult conversations: Improving communication sk Pediatric Critical Care Medicine 10(3):352-359. on Transforming End-of-life Care. Houston, TX, Millikan, C. R. 2013. Presentation to IOM Committee July 22. NASW (National Association of Social Workers). 2004. NASW standards for palliative and end of life . Washington, DC: NASW. care https://www.socialworkers.org/practice/bereavem ent/standards/standards0504New.pdf (accessed January 31, 2014). NASW. 2014. . and advanced practice specialty credentials NASW professional social work credentials org/credentials/list.asp (accessed January 8, Washington, DC: NASW. https://www.socialworkers. 2014). National Matching Services. 2014. ASHP resident matching program nning in 2014: for positions begi . Toronto, Ontario, and Summary of programs and positions offered and filled for the 2014 match Lewiston, NY: National Matching Services, Inc. mmpos.html (accessed April 29, 2014). https://natmatch.com/ashprmp/stats/2013su PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

233 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 4-32 ® NBCHPN (National Board for Certification of Hospice and Palliative Nurses). 2013. National Board for ® ®. Certification of Hospice and Palliative Nurses (NBCHPN . Pittsburgh, PA: NBCHPN ) http://www.nbchpn.org/ (accessed December 2, 2013). ® NBCHPN Certifications offered . . 2014. rtifications%20Offered (accessed August 18, http://www.nbchpn.org/DisplayPage.aspx?Title=Ce 2014). TM EPEC NCI (National Cancer Institute). 2013. -O: Palliative care educational materials. http://www.cancer.gov/cancertopics/cancerlibrary/epeco /selfstudy (accessed November 25, 2013). linary evidence-based practic e: Moving from silos to Newhouse, R. P., and B. Spring. 2010. Interdiscip synergy. 58(6):309-317. Nursing Outlook NHPCO (National Hospice and Palliative Care Organization). 2006. Physician board certification in hospice and palliative medicine (HPM). http://www.nhpco.org/palliative-care/physician-certification (accessed August 26, 2014). Open Society Institute. 2004. Transforming the culture of dying: The Project on Death in America . New York: Project on Death in America. http://www.opensocietyfoundations.org /sites/default/files/a_transforming.pdf (accessed January 25, 2014). PHI (Paraprofessional Healthcare Institute). 2011. Who are direct-care workers? New York: PHI. iles/clearinghouse/PHI%20FactSheet3_singles.pdf http://phinational.org/sites/phinational.org/f (accessed December 4, 2013). ge pathologist in palliative hospice care. Pollens, R. 2004. Role of the speech-langua Journal of Palliative Medicine 7(5):694-702. P. Baird, J. Bull, H. Chochinov, G. Handzo, H. Puchalski, C., B. Ferrell, R. Virani, S. Otis-Green, Sulmasy. 2009. Improving the quality of spiritual Nelson-Becker, M. Prince-Paul, K. Pugliese, and D. care as a dimension of palliative care: The report of the Consensus Conference. Journal of Palliative Medicine 12(10):885-904. Quill, T. E., and A. P. Abernethy. 2013. Genera list plus specialist palliative care—creating a more sustainable model. New England Journal of Medicine 368(13):1173-1175. Radwany, S. M., E. J. Stovsky, D. M. Frate, K. Dieter, S. Friebert, B. Palmisano, and M. Sanders. 2011. American Journal of A 4-year integrated curriculum in palliative care for medical undergraduates. Hospice and Palliative Medicine 28(8):528-535. Rapoport, A., C. Obwanga, G. Sirianni, S. Lawrence Li brach, and A. Husain. 2013. Not just little adults: Palliative care physician attitudes toward pediatric patients. Journal of Palliative Medicine 16(6):675- 679. Rider, E. A., K. Volkan, and J. P. Hafler. 2008. Pediatric residents’ perceptions of communication competencies: Implications for teaching. Medical Teacher 30(7):e208-e217. Robinson, K., S. Sutton, C. F. von Gunten, F. D. Ferris, N. Molodyko, J. Martinez, and L. L. Emanuel. 2004. Assessment of the Education for Physic ians on End-of-life Care (EPEC) project. Journal of Palliative Medicine 7(5):637-645. Saguil, A., A. L. Fitzpatrick, and G. Clark. 2011. Are residents willing to discuss spirituality with patients? Journal of Religion and Health 50(2):279-288. Sanchez-Reilly, S., and J. S. Ross. 2012. Hospi ce and palliative medicine: Curriculum evaluation and learner assessment in medical education. Journal of Palliative Medicine 15(1):116-122. Schwartz, A. 2012. Is this palliative care’s moment? Science of caring. http://scienceofcaring.ucsf.edu/acute-and-tran sitional-care/palliative-cares-moment (accessed November 30, 2013). New York Times, The ont governor shifts focus to drug abuse. Seelye, K. Q. 2014. In annual speech, Verm January 8. me, H. H. Luminais, and D. E. Taylor. 2012. Teaching Seoane, L., D. A. Bourgeois, C. M. Blais, R. B. Ro e unit: How to break the news. palliative care in the intensive car 12(4):312-317. Ochsner Journal PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

234 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life PROFESSIONAL EDUCATION AND DEVELOPMENT 4-33 2006. Personal and professional experiences of pediatric Serwint, J. R., L. E. Rutherford, and N. Hutton. Journal of Palliative Medicine 9(1):70-81. residents concerning death. Shah, A. B., R. P. Morrissey, A. Baraghoush, P. Bhar adwaj, A. Phan, M. Hamilton, J. Kobashigawa, and R. R. Schwarz. 2013. Failing the failing heart: A review of palliative care in heart failure. Reviews in Cardiovascular Medicine 14(1):41-48. Shaw, G. 2012. New opportunities for palliative care in medical education. AAMC Reporter , July. Washington, DC: Association of American Medical Colleges. https://www.aamc.org/newsroom/reporter/july201 2/297224/palliative-care.html (accessed November 20, 2013). Shield, R. R., I. Tong, M. Tomas, and R. W. B esdine. 2011. Teaching communication and compassionate care skills: An innovative curriculum for pre-clerkship medical students. Medical Teacher 33(8):e408-e416. Shipman, S. A., and C. A. Sinsky. 2013. Expa nding primary care capacity by reducing waste and improving the efficiency of care. Health Affairs 32(11):190-1997. Social Work Hospice and Palliative Care Network. 2014. Welcome to the network . http://www.swhpn.org/ (accessed January 31, 2014). Stayer, D. 2012. Pediatric palliative care: A concep tual analysis for pediatric nursing practice. Journal of Pediatric Nursing 27(4):350-356. J. Ryan. 1999. A strategy for improvement in care at the Stevens, D. P., D. H. Jones, J. A. Salerno, and B. 2(1):5-7. Journal of Palliative Medicine end of life: The VA Faculty Leaders Project. Sullivan, A. M., M. D. Lakoma, and S. D. Block. 2003. The status of medical education in end-of-life Journal of General Internal Medicine 18(9):685-695. care. Peters, S. D. Block, and PCEP Core Faculty. 2005. Sullivan, A. M., M. D. Lakoma, J. A. Billings, A. S. of a faculty development program in palliative Teaching and learning end-of-life care: Evaluation care. Academic Medicine 80(7):657-668. Sullivan, A. M., M. D. Lakoma, R. K. Matsuyama, L. Rosenblatt, R. M. Arnold, and S. D. Block. 2007. Diagnosing and discussing imminent death in th e hospital: A secondary analysis of physician interviews. Journal of Palliative Medicine 10(4):882-893. Swick, H. M. 2000. Toward a normative definition of medical professionalism. Academic Medicine 75(6):612-616. %20a%20normative%20defin ition%20of%20medical% http://medprof.bjmu.edu.cn/xsqy/57_towards 20professionalis.pdf (accessed November 30, 2013). The Joint Commission. 2008. . Oakbrook Standards FAQs (hospital manual and home care manual) Terrace, IL: The Joint Commission. ation/jcfaq.aspx (accessed July 26, 2013). http://www.jointcommission.org/standards_inform Tovino, S. A. 2005. Hospital chaplaincy under the HI PAA privacy rule: Health care or “just visiting the , paper 392. Las Vegas, NV: University of Nevada, Las Vegas, William S. sick”? Scholarly Works Boyd School of Law. http://scholars.law.unl v.edu/facpub/392/ (accessed January 25, 2014). Tung, E. E., M. L. Wieland, B. P. Verdoorn, K. F. Mauck, J. A. Post, M. R. Thomas, J. B. Bundrick, T. M. Jaeger, S. S. Cha, and K. G. Thomas. 2013. Im proved resident physician confidence with advance care planning after an ambulatory clinic intervention. American Journal of Hospital Palliative Care 31(3):275-280. United States Medical Licensing Examination. 2013. . Washington, DC: Step 3: Content outlines Federation of State Medical Boards, and Philadel phia, PA: National Board of Medical Examiners. es (accessed November 29, 2013). http://www.usmle.org/step-3/#outlin University of Rochester Medical Center. 2013. . Rochester, Palliative care program: Nursing programs NY: University of Rochester Medical Center. http://www.urmc.rochester.edu/medicine/palliative- care/education/nurse.cfm (accessed November 29, 2013). k. 2008. Palliative care in medical school curricula: A Van Aalst-Cohen, E. S., R. Riggs, and I. R. Byoc Journal of Palliative Medicine survey of United States medical schools. 11(9):1200-1202. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

235 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 4-34 DYING IN AMERICA rwitz. 2011. The bedside evaluation: Ritual and reason. Verghese, A., E. Brady, C. C. Kapur, and R. I. Ho Annals of Internal Medicine 155(8):550-554. Vitello, P. 2008. Hospice chaplains take up bedside counseling. New York Times , October 28. http://www.nytimes.com/2008/10/29/nyregion/29hos pice.html?pagewanted=all&_r=0 (accessed September 20, 2013). von Gunten, C. F., P. Mullan, R. A. Nelesen, M. Sosk lz, and D. E. Weissman. ins, M. Savoia, G. Buckho medicine curriculum for third-year medical 2012. Development and evaluation of a palliative 15(11):1198-1217. Journal of Palliative Medicine students. Walsh-Burke, K., and E. L. Csikai. 2005. Professiona l social work education in end-of-life care: s Social Work Leadership Development program. Contributions of the Project on Death in America’ Journal of Social Work in End-of-Life and Palliative Care 1(2):11-26. Weisenfluh, S. M., and E. L. Csikai. 2013. Professi onal and educational needs of hospice and palliative care social workers. 9(1):58-73. Journal of Social Work in End-of-Life and Palliative Care A. Laidlaw, and H. Salisbury. 2013. How do United Wiskin, C., E. M. Doherty, M. von Fragstein, t undergraduate medical students who “fail” Kingdom (UK) medical schools identify and suppor BMC Medical Education (July) 95. communication assessments? A national survey. Wolfe, J., P. Hinds, and B. M. Sourkes. 2011. Textbook of interdisciplinary pediatric palliative care. Philadelphia, PA: Elsevier Saunders. ce, T. Balboni, S. L. Mitchell, V. A. Jackson, S. D. Wright, A. A., B. Zhang, A. Ray, J. W. Mack, E. Tri 2008. Associations between end-of-life discussions, Block, P. K. Maciejewski, and H. G. Prigerson. Journal of the eath, and caregiver bereavement adjustment. patient mental health, medical care near d 300(14):1665-1673. American Medical Association PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

236 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5 Policies and Payment Systems to Support High-Quality End-of-Life Care Financial incentives built into the programs th at most often serve people with advanced serious illnesses—Medicare and render more services and Medicaid—encourage providers to more intensive services than are necessary or beneficial, and the l ack of coordination among programs leads to fragmented care, with all it s negative consequences. In short, the current health care system increases ri dable burdens on them and their sks to patients and creates avoi families. Meanwhile, the practical but essential day-to-day support services, such as caregiver training, nutrition services, and medication manageme nt, that would allow pe ople near the end of life to live in safety and comfort at home—where most prefer to be—are not easily arranged or paid for. The U.S. health care system is in a state of rapid change. The impact of these shifting programs and incentives—and both their benefi cial and unintended negative consequences—on Americans nearing the end of life should not be overlooked. Appropriate measurement and accountability structures are needed to ensure end of life will benefit that people nearing the under changing program policies. In assessing care system affects how the U.S. health cused on evidence that the current system is Americans near the end of life, the committee fo characterized by fragmentation and inefficiency, inadequate treatment of pain and other distressing symptoms, fre quent transitions among care settin gs, and enormous and growing care responsibilities for families. While the committee focused on improving the quality of care for people with serious it also was attentive to the need to control advanced illnesses who may be approaching death, spending throughout the U.S. health care system. Likewise, most new h ealth program proposals for the last several decades, up to and including the 2010 Patient Protection and Affordable Care Act (ACA), have tried to balance increasing access and improving the quality of care with managing costs. Indeed, decades of experience w ith the nation’s flagship health care programs— those who “spend down” their life savings to Medicaid for low-income Americans (including become eligible) and Medicare for those aged 65 and older and persons with disabilities— suggest that improving the quality of care can reduce costs. rough a range of new delivery e, better quality of care th For those nearing the end of lif models has repeatedly been shown to reduce the need for frequent 911 calls, emergency department visits, and unnecessa ence suggests that palliative ry urgent hospitalizations. Evid grate health care and supporting services may care, hospice, and various care models that inte e of expensive hospital- and e care that can reduce the us provide high-quality end-of-lif institution-based services, and ha lize and even reduce health care ve the potential to help stabi PROOFS UNCORRECTED COPY: PREPUBLICATION 5-1 Copyright © National Academy of Sciences. All rights reserved.

237 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-2 DYING IN AMERICA ting savings could be used to fund highly targeted costs for people near the end of life. The resul and carefully tailored supporting services for bot h children and adults (K omisar and Feder, 2011; Unroe and Meier, 2013), improving patient care while protecting and supporting families. This chapter describes t hose opportunities. x of individual profe ssionals, acute and long- The U.S. health care system is a complex mi ancillary services, payers, vend term care facilities, dozens of ors, and many other components. theoretically sound it Making a potentially cost-saving change in one area, regardless of how may be, may create a response elsewhere in the sy stem that prevents over all savings from being achieved. For that reason, piecemeal reforms will not work, and comprehensive approaches are needed. The committee notes that many positive aspects of the nation’s current evolving health ents to choose providers and treatments, the care system—the opportunities it affords for pati growing number of quality initia search and technology, and the tives, its investment in re institutions to care for the frailest and sickest commitment of large numbers of professionals and Americans—could be lost in draconian or ill-c onsidered cost-containment measures, such as at reason, the committee focused on the system stinting on needed and beneficial care. For th changes that would not only serve the needs of th e sickest patients and their families but also, as a result of better quality, lead to more efficient, affordable, and sustainable practices. To this end, ograms and care delivery models that could be much can be learned from existing successful pr applied more widely. In May 2013 testimony before the House Committee on Ways and Means Subcommittee 1 on Health, Alice Rivlin sting question and arrive d at an even more began with an intere interesting answer: Why reform Medicare? The main reason for reforming Medicare is not that the program is the principal driver of futu re federal spending increases, although it is. The main reason is s could be receiving much that Medicare beneficiarie not care, although they could. The most better coordinated and more effective big enough to move the whole American important reason is that Medicare is health delivery system away from fee- for-service reimbursement, which rewards volume of services, toward new delivery structures, which reward quality and health care delivery that will give all value. Medicare can lead a revolution in Americans better health care at sustainable cost (Rivlin, 2013). Rivlin’s remarks highlight the two issues faci ng Medicare and the U.S. health sector as a pervaded this study. ese two intertwined issues whole—costs and quality. Th lack of service coordination, The poorer quality of care and hi gher costs that result from fragmented and siloed delivery ross settings and programs, and risky and repeated transitions ac aring the end of life. icans, including those ne and payment systems affect large numbers of Amer ffects of the ACA, it is not too soon to start Although it is too early to predict the ultimate e 1 Alice Rivlin is Leonard D. Schaeffer chair in health econo mics at the Brookings Institution, a visiting professor at erg Center for Health Care director of Brookings’ Engelb the Public Policy Institute of Georgetown University, and Reform. She recently served as a member of the President’s Debt Commission, was founding director of the Congressional Budget Office, served as Office of Management and Budget director, and was Federal Reserve vice- chair. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

238 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-3 POLICIES AND PAYMENT SYSTEMS calling for accountability and transpar ency in care near the end of lif e to ensure that the goals of health care reform are realized for the mo est beneficiaries. st vulnerable and sick This chapter describes systemic shortcomings in U.S. health care th at hinder high-quality, compassionate, and cost-effective care for people of all ages near the end of life and their families. The chapter begins by summarizing the quality and cost challenges that must be faced ems to support high-qualit in efforts to redesign policies and payment syst y end-of-life care. It then provides background information on the most important programs responsible for financing incentives in those progra and organizing U.S. health care and the perverse ms that affect people near the end of life. Next, the chapter examines the gap between the services these programs pay for and what patients nearing the end of life and their families want and need. The chapter then turns to opportunities and initiatives to address th e shortfalls and gaps in the current system and ability in the delivery of care the concomitant need to establis h greater transparency and account lining research needs, the chapter ends with the committee’s near the end of life. After out findings, conclusions, and recomm endations on policies and payment systems to support high- quality end-of-life care. THE QUALITY CHALLENGES Americans of any age who have a serious and potentially life-limiting medical disorder, to young adults brain-injured in an condition—from infants with a devastating genetic automobile crash, to frail older people with multiple chronic diseases—can experience a system services, and crisis and interventions, high-tech that is structured and financed to provide costly emergency care. This system is experienced by many thousands of people. What requires close examination and reform is how those resources ar e spent and whether they are well matched to the values, goals, wishes, and needs of patients and families. Current evidence suggests they are not. The health care payment system in the Unite d States is different from that in other wealthy, industrialized nations and has resulte d from the nation’s unique politics and history. procedures and therapies provided, and typically The U.S. system rewards the volume of medical y, long-term services a nd supports—such as a neither recognizes nor pays for the day-to-da eating—that are needed by people with advanced companion to help with dressing, bathing, and Feder et al., 2000). As noted ilies (Rivlin, 2013; MedPAC, 2011; serious illnesses and their fam people would prefer to have these ongoing needs in Chapter 2, given an informed choice, most met in their homes and communities. Because they often cannot, they routinely and repeatedly resort to 911 calls, emergency department visits, and hospitalizations that are neither beneficial ity care, and it is extremely expensive. nor wanted (Meier, 2011). This is poor-qual nd multiple chronic conditions share certain People with advanced serious illnesses a needs independent of their diagnosis, stage of i llness, or age. They have a high prevalence of pain and other distressing symptoms that adversely affect function and quality of life. They are at ity, like more than 60 percent of the costliest high risk of functional dependency, and the major ies, require help from another 5 percent of Medicare beneficiar person in meeting basic needs on s, such as dementia or delirium, and from a daily basis. Many suffer from cognitive impairment other mental health problems, such as depressi at require specialized on and anxiety—problems th s places enormous burdens—physical, emotional, attention and intervention. Meeting such need ecially, as discussed in Chapter 2, on family practical, and financial—on their families and esp caregivers. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

239 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-4 DYING IN AMERICA r reorientation of Medicare and Medicaid is In this context, the committee believes a majo y designed to address the central needs of nearly needed to craft a system of care that is properl all Americans nearing the end of life. This reor cognizing the root causes ientation will require re of high utilization of the system (such as exha usted family caregivers); designing services to address those causes (such as around-the-clock access to advice by te lephone); reallocating care to support more funding away from preventable or unwanted acu te/specialist/emergency appropriate services; and reducing e reliance on the riskiest, least the financial incentives that driv suitable, and most costly care settings—the emergency department, the hospital, and the intensive care unit. Fundamentally, services must be tailored to the evolving needs of seriously ill individuals and families so as to provide a positive alternative to costly acute care and to help these patients remain safely at home, if that is their preference. Such tailoring of services would benefit far more people than attempting to reduc e services for those in predictably imminent danger of dying. THE COST CHALLENGES Forty years ago, U.S. national d $75 billion, or 7.2 percent health care expenditures totale of the nation’s gross domestic product (GDP); by 1990, they totaled 10 times that amount— $724 billion—or 12.5 percent of GDP; and just 22 years later, in 2012, they totaled $2.8 trillion, or about 17.2 percent of GDP, having risen some $100 billion between 2011 and 2012 (Martin 2 et al., 2014). With by far the largest budge t of any department in the federal government and a program scope that “touches th e lives of virtually every Am erican” (IOM, 2009, pp. 21-23), the U.S. Department of Health and Human Services (HHS) exerts enormous influence over health care in America. That influence is exerted ch iefly through Medicare and Medicaid, and the cost challenges in the Medicare and Medicaid programs are of urgent and long-standing concern to tical spectrum (Moffit and Seng er, 2013; Robillard, 2013; Altman policy analysts across the poli and Shactman, 2011, p. 345). cal Responsibility and Refo The National Commission on Fis rm called federal health spending the nation’s “single la e long run” (National Commission rgest fiscal challenge over th on Fiscal Responsibility and Reform, 2010, p. 36). Medicare and Medicaid have grown s and structure have exponentially since their establishment almost 50 years ago, and their rule done much to shape care for the seriously il l and those who are dying. Financial pressure on federal health spending has several causes: • The two programs cost a combined Medicare and Medicaid are expensive. 3 or about 36 percent of total U. S. national health expenditures, $994 billion in 2012, 2014 (Cuckler et al., 2013). By consuming and are projected to cost $1.125 trillion in nding, Medicare and Me dicaid may crowd a large and growing portion of public spe out needed investments in education, the e nvironment, housing, infrastructure such as 2 l health care ($2.36 trillion), government administration The $2.79 trillion figure includes expenditures for persona ($33 billion), net cost of health insurance ($164 billion), and government public health activities ($75 billion), as search, structures, and equipment. well as $160 billion in noncommercial re 3 ral ($237.9 billion); and Medicaid, state and local The sum of Medicare ($572.5 billion); Medicaid, fede tin et al., 2014). ($183.3 billion) (Mar PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

240 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-5 POLICIES AND PAYMENT SYSTEMS roads and bridges, alleviation of povert y, and other areas, whic h together arguably have a greater effect than me dical care on population health. • Expenditures for the two programs continue to rise and are projected to account for an increasing share of the economy. Although overall growth in U.S. health expenditures has slowed in recent years, spending on Medicare grew by almost a third between 2007 and 2012 (from $432.8 billion to $572.5 billion) and on Medicaid by about 30 percent (from $326.2 billion to $421.2 billion) (Martin et al., 2014). Medicare trustees project that the cost of the program will grow from 3.6 percent of 2035 (Boards of Trustees, Federal Hospital the nation’s GDP in 2012 to 5.6 percent in dical Insurance Trust Funds, 2013), while Insurance and Federal Supplementary Me Medicaid expenditures are expected to more than double between 2013 and 2022, from $265 billion to $536 billi on, especially with expansions in eligibility under the ACA (Elmendorf, 2013). • The population is changing. The aging of baby boomers (those born between 1946 and 1964) and the growing number of Am ericans who are livi ng longer but with substantial burdens of chronic disease put pressure on both Medica re (health services) e are the population group most likely to and Medicaid (long-term care). Older peopl tional dependency, and spending on patients have chronic conditions leading to func of all ages with chronic c cent of health care costs onditions accounts for 84 per 4 (Moses et al., 2013). • Older Americans’ reliance on family members— Family caregiving has its limits. 2009—to serve as caregivers may be whose care was valued at $450 billion in difficult to sustain (Feinber g et al., 2011). About half (45 percent) of American r children, if they have any, may be women aged 75 and older live alone, and thei unable to leave their own jobs to take on the caregiving role (AoA, 2013). A loss of family caregiving capacity would increase demand for services paid for by both Medicare and Medicaid. • The ratio of elderly The proportional tax base for the programs is shrinking. Americans to working-age Americans, who pay the taxes that fund Medicare and 21 Americans aged 65 and older for every Medicaid, is shifting. In 1990, there were 100 working-age Americans (Bureau of th e Census, 2013); the projection for 2030 is 38 Americans 65 and older for every 100 of working age. An ever-smaller proportion of working Americans will be asked to cont ribute to health care for people at all 5 incomes and substantial financial assets. income levels, including those with large • The pay-as-you-go system has its limits. Despite popular miscon ceptions, Medicare is aries have not fully funded by current contributions and revenues. In general, benefici r “take out” (Jacobson, “paid in” during their working years for th e benefits they late erage-wage couple took out more than 2013). In 2010, for example, a one-income, av id in (Steuerle and Quakenbush, 2012). $6.00 in Medicare benefits for every $1.00 pa importance of the various factors implicated Analysts differ in their views on the relative in the rise in federal expenditures on health care: 4 S. population and 40 percent of the population incurring The Medicare-eligible population is 14 percent of the U. high health care costs (see Appendix E). 5 Although higher-income beneficiaries pay somewhat more for their Part B (physician) coverage. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

241 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-6 DYING IN AMERICA • One recent analysis suggests that most in creases in health care costs since 2000 have not been the result of population factors, su ch as aging or demand for services, but of high prices (especially for hospital care), th e cost of drugs and medical devices, and administrative costs (Moses et al., 2013). Th ese authors conclude that higher prices increase between 2000 and 2011. Average accounted for some 91 percent of the surgeries are dramatically higher in the prices for everything from pharmaceuticals to r countries (Klein, 2013). United States than in othe • Other analyses attribute growth in health ca re costs to a larger mix of factors. The 6 Bipartisan Policy Center (2012), for exampl e, cites 13 major contributors to costs, emphasizing that none of them exist in isol ation and that policy interventions must address multiple cost drivers. wering health care costs and improving • Based on a series of workshops on lo outcomes, an Institute of Medicine (IO M) committee concluded that almost 31 percent of 2009’s total heal been avoided by eliminating th care costs could have unnecessary services, inefficiently delivered services, excess administrative costs, prices that were too high, missed prev ention opportunities, and fraud (IOM, 2010a, Box S-2). Because of these economic realities, recommendations simply to increase total Medicare for people with advanced serious illnesses or Medicaid expenditures—say, to add new benefits without reducing costs elsewhere—are unlikely to be accepted. Conversely, proposals that the quality of care may be demonstrably reduce costs as a result of improving far better received by policy makers of all political persuasions. U.S. health spending has grown more slowly than expected since the recent recession, a trend that has persisted. The slowdown has been at tributed to a number of factors, including less cy of providers (Ryu et al., sharing, and increased efficien new technology, greater patient cost 2013). If the trend continues, public-sector health care spending through 2021 will be substantially lower than proj ected, some analysts believe, and “bring much-needed relief . Others are less optimistic and believe throughout the economy” (Cutler and Sahni, 2013, p. 848) the fundamental structural, marketplace, pricing, and demographic causes of cost growth remain unchanged (Bipartisan Policy Center, 2012). Despite the above analyses, people in their last year of life are widely believed to be a re spending. As described in th main driver of excess health ca e background paper prepared for e last year of life account this study by Aldridge and Kelley (Appendix E), however, people in th 7 Although the top 5 percent of for just under 13 percent of total annual U.S. health care spending. 6 r-service reimbursement; fragmentation in care delivery; administrative burden; The 13 cost contributors are fee-fo population aging, rising rates of chronic disease, and co morbidities; advances in medical technology; tax treatment transparency about cost and quality to inform consumer of health insurance; insurance benefit design; lack of choice; cultural biases that influence care utilization; changi ng trends in market consolidation; high unit prices of medical services; the legal and regulatory environment; an d the structure and supply of the health professional workforce. 7 data on cost of care in the last year of life paid by This estimate is based on 2011 Health and Retirement Study Medicare, adjusted to account for costs paid by other sources (Medicaid, 10 percent; out of pocket, 18 percent; other, including private payers, 11 percent). The per person estimate that resulted was then applied to all 2011 deaths to arrive at a total. A limitation of this approach is that it excludes information on the non-Medicare population; however, the majority of costs in the la st year of life are covered by Medicare. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

242 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-7 health care spenders account for 60 percent of all health care costs, almost 90 percent of that costliest 5 percent are not in their last year of life. Since 1978, expenditures for Medicare beneficiaries in the last year of life—many of whom have multiple chronic conditions and dementia—have held steady at just over a quarter of all Medicare expenditures (see Appendix E). In light of this analysis, the oft-expressed co ncern about “excess spendi ng in the last year of ivers of U.S. health care expe nditures overall, such as those life” distracts from the real dr am in particular. Those drivers include the described above, or those of the Medicare progr system incentives described in this chapter, which not only push people toward use of the expensive acute care system as a substitute fo r inadequate community and supporting services bit expansion of those services. but also, by being so costly, inhi OF END-OF-LIFE CARE FINANCING AND ORGANIZATION The IOM reports Approaching Death (1997) and When Children Die (2003) acknowledge the importance of the U.S. health care system in securing the care needed by dying n confusing organizati onal, financial, and adults and children and the “complex and ofte essionals and institutions with each other and regulatory arrangements that link health care prof zations” (IOM, 2003, p. 181) with governments, insurers, and other organi . The present report ppendix B provides an overview of progress on revisits many of these entrenched problems. (A the two previous reports’ recommendations.) Over the last five decades, Congress has es tablished an array of programs intended to meet the health care needs of older and low-income Americans: • Medicare, the largest program, covers Am ericans aged 65 and older, people with ity Income, and those with ng Social Security Disabil permanent disabilities receivi one of several specific life-threatening c care is federally onditions. As noted, Medi funded by current revenue. Medicaid covers pregnant women, children, • adults with dependent children, people 8 with disabilities, the low-income elderly, and in some states the “medically needy” (KFF, 2013a). Although people commonly thi nk of Medicaid as a program for poor children and their parents, fully 30 pe rcent of the program’s 2011 expenditures (approximately $125 billion) was for long-term care. Medicaid is financed jointly by the federal government and the states. The federal government allows the states wide administrative latitude, which results in grea t variability in benefits and eligibility among states. • The nearly 10 million Americans who receive both Medicare and Medicaid benefits 10 years of data on the extent and causes are termed “dual-eligible.” A recent study of eligible for Medicaid found that r assets to become of people “spending down” thei population aged 50 and older became almost 10 percent of the non-Medicaid most two-thirds of Medicaid recipients Medicaid eligible by the end of the study. Al became eligible by spending down, and people who spent down had substantially n with—a finding “inc onsistent with the lower incomes and fewer assets to begi 8 w people whose income exceeds usual Medicaid eligibility States that have “medically needy” programs allo thresholds to enroll if their income minus medical expenses meets the eligibility standard lp-paying-costs/medicaid/medicaid.html). (http://www.medicare.gov/your-medicare-costs/he PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

243 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-8 DYING IN AMERICA common assumption that...people who spend down are predominantly middle class” (Wiener et al., 2013, p. ES-2). lenges because the separately created and The dual-eligible population faces special chal managed health and social programs under Medi care and Medicaid are not coordinated and contain perverse eligibility and coverage incen tives. These financial incentives create waste and result in patients moving back and forth betw een care settings (and payment options) not for care that is both poor medical reasons, but to maximize provider reimburse ments. The result is Coordination Office, quality and very costly. The ACA created a new Medicare-Medicaid described later in this chapter, in an attempt to address these challenges. Table 5-1 briefly summarizes the principal programs available to meet the needs of people with serious advanced illnesses and thei r families. The paper by Huskamp and Stevenson in Appendix D provides additiona l detail, as does the series of “Payment Basics” papers available on the website of the Medicare Payment Advisory Commission (MedPAC, an independent congressional agency, www.medpac. gov). The detailed regulations pertaining to ny of their key features these programs run to thousands of pages, and ma are changing as a result of the ACA. As an example, the number of enrollees in the Medicaid program will rise y eligible residents (most of states extend coverage to newl substantially under the act as many whom formerly lacked health insurance). TABLE 5-1 e to People with Serious Advanced Illnesses Major Health and Social Programs Availabl Program Number of Payments Americans Who (FY 2012 unless a Benefit Program noted) Principal Services Covered b (federal) Traditional Medicare Medicare Part A 49.4 million (2012) Primarily acute inpatient hospital care (90 $139 billion days per illness episode), skilled nursing facility stays, and other services Medicare Part B her health professional $102 billion 44 million (2010) Physician visits and ot services Part A and Part B benefits managed by local Medicare $123 billion 14.4 million and regional health plans, with other services Advantage (2013) Program (hospice, drug coverage) optional, often for an additional premium $54 billion Medicare Part D 36 million (2013) Outpatient drug expenses through prescription drug plans (deductibles and cost sharing apply, except for low-income Americans) $14 billion Medicare Hospice Hospice-provided services related to a 1.2 million (2011) Benefit (under Part terminal illness (2011) A) $21 billion Skilled care at home: nursing; physical, 3.4 million (2011) Medicare Home Health Care (under occupational, or speech therapy; medical Parts A and B) social work; home health aide services PREPUBLICATION PROOFS COPY: UNCORRECTED Copyright © National Academy of Sciences. All rights reserved.

244 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-9 Medicaid (federal and state) 14.8 million Medicaid Health Inpatient and outpatient hospital care, $272 billion physician and other professional services, and Insurance (2011) elderly people and laboratory and radiology; all states except people with Oklahoma cover hospice care disabilities (2013) Long-Term Care 4.4 million adults Nursing home and home health care $125 billion (2011) Assistance (2011) Assistance to Medicare premiums and cost sharing, as well $115 billion 9.4 million Medicare Medicare as uncovered services (especially long-term (2011) beneficiaries care) for “dual-eligible” people Beneficiaries c Department of Veterans Affairs (VA) Medical Care Medical care, including long-term care, home $46 billion 5.6 million veteran care, respite care, and hospice/palliative care patients (2012) Private Insurance Wide variation in coverage; almost 8 percent $917 billion 149 million Usually through Employment- nonelderly of hospice patients’ care is paid for by private Related Plans for insurance, compared with 84 percent paid for Employees and by the Medicare Hospice Benefit Retirees Mostly costs not covered by Medicare, such as 10.2 million Medicare Information not Supplemental available deductibles, co-insurance and co-payments Insurance Long-Term Care 10 percent of the Nursing home and other long-term care 4 percent of elderly Insurance services, depending on the policy. long-term care expenses NOTES: a Does not include some services, administration, public health, and investment. b Some people receive benefits under more than one program. c udes costs of medical services, medical administration, facility The VA’s medical care category incl maintenance, educational support, research support, and other overhead items, but does not include costs edical support (http://www.va.gov/vetdata/Expenditures.asp). of construction or other nonm SOURCES: MedPAC (payment basics): www.medpac.com; Huskamp and Stevenson (Appendix D); Medicare Part A and Medicaid enroll (KFF, 2014); State Health Facts ees: Kaiser Family Foundation, National Trends” (CMS, undated-a; KFF, 2013a); Medicare Part B: CMS “Medicare Enrollment: AARP (2013); Private insurance: Martin et al. Medicaid Long-Term Care Assistance: KFF (2013a), nce: NBER (undated). ; Long-Term Care Insura (2014); Medicare Supplemental Insurance: AHIP (2013) PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

245 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-10 DYING IN AMERICA Medicare is the chief payer of care for peopl e aged 65 and older w ith advanced serious illnesses and those who elect hospice. The comm ittee calculated that in 2009, approximately 80 percent of U.S. deaths occurred among peopl e covered by Medicare. This share has grown Approaching Death (IOM, 1997), when Medicare covered since the publication of approximately 70 percent of deaths (IOM, 1997, p. 155). Medicaid is the most significant payer for care of low-income children with life-limiting conditions, and it paid more than two-fifths of the nation’s total bill for nursing home and other long-term care services in 2010 (KFF, 2013a,b). Additional funding for long-term care services comes from Medicare (for post-acute care), the Social Services Block Grant, the VA, Older Housing and Urban Development, other state Americans Act programs, the Department of programs, private insurance, and out-of-pocke t spending. Families pay out of pocket for many expenses incurred in the last year s of life. In a study of 3,209 Medica re beneficiaries, total health care expenditures in the 5 years before deat h not covered by insurance plans amounted to $38,688 for individuals and $51,030 for couples, one of whom died. For a quarter of the families total household assets (Kelley et al., 2013b). studied, these expenditures amounted to more than Note that high out of pocket-costs and severe fi nancial impacts are not limited to families with ighted the economic hardship—including work elderly decedents. Recent research has highl among families of children who have advanced disruptions, income loss, and increased poverty— cancer and those who die (Dussel et al., 2011; Bona et al., 2014). Medicaid cover the great majority of people One way or another, however, Medicare and problems, and are clearly amenable to change in the last years of life, present identifiable through federal action. Consequently, this chapter focuses on these two programs. PERVERSE INCENTIVES AND PROGRAM MISALIGNMENT driving the volume of At the system level, the financial incentives services delivered and leading to fragmentation in th e nation’s health care system are among the most significant contributors to unnecessarily high costs (Kamal et al., 2013). According to Elhauge (2010, p. 8), disincentives for any provider to invest in “The current payment system perversely provides of patients for health care, because...such coordination or care that might lessen the need or hospital services.” Th ese perverse incentives investments result in fewer payments for medical have led to a series of disconnected, siloed service programs, each with different payment, eligibility and benefit rules and requirements. Rigid silos of covered services are difficult for program managers, he acilities, alth care f clinicians, and families to overcome when trying to meet the needs of a particular patient. In fact, one of the most burdensome problems patients and family caregivers face is the lack of coordination and communication among different components of the health care system. Not patient’s care is deeply frustrating and adds knowing whom to call or who is in charge of a ons (National Direct Service Workforce Resource unnecessary stress to already difficult situati e system and on 911 calls adds risk of harm, Center, 2011). Default reliance on the emergency car es of public programs affect izes how the financial incentiv burden, and cost. Table 5-2 summar people with serious advanced illnesses. ue integration across program eligibility, Absent incentives and mechanisms for tr achieve an effectively functioning continuum of benefits, and financing, it will be impossible to is situation is in sharp contrast to the IOM’s care for people with advanced serious illnesses. Th ich emphasize customization based on patient “new rules to redesign and improve care,” wh PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

246 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-11 the health system, as the source of control (IOM, 2001, p. 61-62). needs, with the patient, not Technical, political, and attitudinal barriers mu st be overcome to integrate funding streams and end cost shifting among programs. Whether recent he alth care reforms will be able to sufficiently realign current incentives remains to be seen. TABLE 5-2 How Financial Incentives in Public Programs Affect People with Serious Advanced Illnesses Effects on People with Serious General Payment Program Advanced Illnesses Approach Financial Incentives (1) May encourage overuse of (1) Higher payments for Fee-for-service, based Medicare Part A services, even when more intensive services are on patient’s diagnosis (hospitals) nonbeneficial; (2) frail, very sick an incentive to provide and hospital’s cost people experience multiple services and procedures; experience transfers from one care setting to (2) fixed, diagnosis-based another and increased payments for an inpatient rehospitalization rates stay encourage early discharge, often to a skilled nursing facility 30 percent of Medicare Medicare Part A Payment of a fixed per Patients cannot receive both beneficiaries receive (skilled nursing diem based on the skilled nursing and hospice “rehabilitative” care in a skilled facilities) seriousness of a care for the same condition; nursing facility in the last resident’s condition basing payment on patient 6 months of life, almost always acuity in theory encourages after a hospital discharge providers to capture the entirety of patients’ needs (although quality concerns remain) (1) Survival is difficult to predict, (1) The hospice benefit is Medicare Part A For 97 percent of days, and the limit creates “an artificial limited to people who have hospices receive an (Medicare distinction between potentially an expected prognosis of all-inclusive per diem Hospice Benefit) life-prolonging and palliative 6 months or less if the payment, not adjusted therapies” (Appendix D) as well disease runs the expected for case mix or setting as a psychological barrier to course and who agree to or for outlier cases accepting hospice care; (2) if care forgo curative treatment for is too complex for the home, the terminal condition; transfer to a hospital and (2) the program was discharge to skilled nursing may designed mainly for care in appear to be the best option the home (where room and unless patients also have board are not an issue) and Medicaid (which pays for nursing does not take into account homes) variable needs over time Medicare Part B Encourages clinicians to Excessive, high-intensity, and Fee-for-service burdensome care that may not be provide more services and (physicians) wanted is provided in the last treatments months and weeks of life PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

247 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 5-12 (1) Plans are rewarded for Capitation (1) Unnecessary and unwanted Medicare Part C (Medicare treatments, services, and efforts to manage chronic Advantage) diseases effectively; hospitalizations may be reduced; (2) plans may be encouraged to (2) when patients enroll in hospice, they revert to fee- promote hospice enrollment for-service Medicare among high-need, high-cost patients Less expensive products, often Prescription drug costs are Medicare Part D Administered prices controlled generic forms, are used when (drugs) available (1) Unknown Acuity score assigned (1) The acuity score method Medicaid Long- reduces incentives to avoid to each resident Term and (2) Individuals discharged from Nursing Home people with costly the hospital back to the nursing Care conditions; (2) Medicaid’s home under the skilled nursing lower reimbursement for benefit cannot receive hospice nursing home care is an care concurrently for the same incentive to hospitalize dual- condition; a 2011 analysis eligible residents and return suggested a quarter of the them to the facility under the hospitalizations for dual-eligible higher-paying Medicare beneficiaries in the year studied skilled nursing benefit (2005) were preventable, being due largely to the financial incentives for nursing homes to make these transfers (Segal, 2011) Medicaid Home For people eligible for Unknown Intended to prevent nursing facility Health excessively long periods of nursing home care services; benefits vary ACL’s goal is to increase access Examples include elder Administration $1.34 billion budget in rights services, the to community supports for older 2013 for programs for Community Living (ACL) addressing health and Americans and people with Alzheimer’s Disease independence, disabilities; it administers Supportive Services programs authorized under the caregiver support, and Program, long-term care information, a family Older Americans Act and Medicare Developmental Disabilities caregiver support program, improvements Assistance and Bill of Rights Act nutrition services, and some support services cility benefit: Aragon et al. (2012), Segal (2011); SOURCES: Appendix D; effects of skilled nursing fa /Organization/Index.aspx. ACL: http://www.acl.gov/About_ACL Payer Policies and Costs of Care tury ago, doctors and hospitals have been Since Medicare’s inception nearly half a cen s of fees for services performed. (Figure 5-1 reimbursed for the care they provide on the basi service for 2012.) Fee-for-service benefit payments by type of shows a breakdown of Medicare services delivered. They remain the dominant payments reward the volume, not the quality, of PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

248 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life S POLICI S TEM S E 5-13 SY T MEN Y E S AND PA Y U apitated he a a .S. health c a financin a re despite a g c ericans in rising prop lth a m c g model in U ortion of A m d plans, in f c e dicare Adv a e ed care (M g g icare mana d luding Me c a ntage), an d g d the growin g number o f K ). p K ane and E m salaried hysicians ( 3 p mons, 201 m 3 r e benefit pa Medica ments by ty y r p y 2012. e of service, 5-1 FIGURE p SOURC ndation. u Reprinted w i u r Family Fo E n th permissio i : KFF, 2012. e E H H from The n enry J. Kais e payments g e G ve physicia enerous fee G i -for-service i i e s to—even ns incentiv a i n the final life—provi ltiple subs u weeks o ost service nsity, high- c s u s c p f f p ecialties, or der , consult m de high-inte hospice red procedures and hospit a a lize patient s , patients to eca b d g tests and . An s d uces u , u se referrin g u ther provid e rs, the fee- f e ystem disc s -service r o f t ly referrals m e of some o s t o o m o o urages time the inco mly selecte a enefici b re a A study of o 6,000 rand 8 ar ies m hospice. r m d fee-for-se r vice Medic a o ore than 2 8 nd that alth d rolled in h o o n n spice at the u u in 2009 fo d ough 42 per time of thei r who die cent were e percent of l a n t were und e n ly 28 perce l a re for 3 da y death, fu s or less. y e r hospice c a M ore than 40 M te a eded by an c i ntensive ca ( Teno et al., r ( e unit stay r i c e were pre c nts in hospi c 2013). The enrollme i ers of Medi o b i f urther com p i o th patterns f p ared these 2 b 009 rates w 2 f care for s care imilar num authors d ries in 200 0 and 2005. O 0 enefici a l and inten s a vide hospit o a o ency to pr d b a O ver the de c ive s c ade, the ten the end of a l ife appeare d l r sing. a care nea to be incre d r B t system n r oth liberals n e ault with th f atives find e vice payme r f B v fee-for-se and conser v a e National e C ommission on Physicia R eform, est a n C a blished by t h (Caprett R Payment h n a e , 2013). Th i , conclude 2 r bursemen r -service rei m d m that fee-fo t Society d t ternal Med n o is n f General I o 2 cine in 201 i important c f The first o a use of hig h h a health care costs and e x penditures. x the f the most alone v m y y er time, pa m inate stan d - ers should ion’s 12 rec v ns says, “O o o ommendati largely eli commiss PROOFS P D Y: P CO TION A D A EPUBLIC R RRECTE R P UNCO Copyright © National Academy of Sciences. All rights reserved.

249 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-14 DYING IN AMERICA fee-for-service payment to medical practices be cause of its inherent inefficiencies and problematic financial incentives” (Schroeder and Frist, 2013, p. 2029). Nevertheless, fee-for-service is expected to remain a continuing and significant payment approach for many years to come (Wilensky, 2014). While Medicare and other payers will reimburse accountable care organizations (ACOs) established under the ACA through a will use fee-for-service methods to pay many graduated capitation approach, ACOs in turn udes provisions to improve the fee-for-service system, revising physicians. The act therefore incl the physician fee schedule and better reflecting the relative value of resources expended (Ginsburg, 2012). The Hospital Environment Hospital Care As noted in Approaching Death (IOM, 1997, p. 96), “curing di sease and prolonging life are the central missions of [hosp itals]. Hospital culture often rega rds death as a failure...” While ly saves the lives of a great many otherwise healthy people, hospital and intensive care undoubted , harmful—for people with advanced and it is not necessarily useful—and is, to the contrary irreversible chronic illnesses. Yet it is hospita l care, not community- or home-based care, that consumes the largest share of Medicare spending for patients in the final phase of life: fully 82 percent of all 2006 Medicare sp of life was for hospital care, ending during the last 3 months despite the known risks and costs of such care and despite widespr ead patient preferences, noted in earlier chapters of this report, for less intensive and more home-based services (Lakdawalla et al., 2011). The transitions between care sites—from hospital to home or nursing home and back chapter, by the current payment system, put again—encouraged, as discussed earlier in this patients at risk (Davis et al., fection, medical errors, delirium, 2012). Resulting higher rates of in and falls are collectively captured by the term “burdensome transitions” (see Chapter 2), and e. Earlier death may also result from these they are increasingly common near the end of lif transitions. The average (mean) number of transitions from one site of care to another in the last 90 days of life increased from 2.1 per decedent in 2000 to 3.1 in 2009, and more than 14 percent eno et al., 2013). This high rate of transitions of these took place in the last 3 days of life (T between care settings is costly and inconsistent with high-quality care. Emergency Services When emergency medical services (EMS) provi ders respond to a 911 call for a Medicare patient, they are required under current Center s for Medicare & Medicaid Services (CMS) well) to transport the patient to a hospital as a policies (generally followed by private insurers as condition for being paid for their response. As a re sult, patients who might better be served by a to a primary care clinician, if su palliative care home visit or a trip ch services were available, end 9 department (Alpert et al., 2013). up being treated in an emergency Pain and other unmanaged symptoms prompt many of these visits. ergency department in their last month of Fifty percent of older Americans visit the em st 6 months of life; in 77 percen t of cases, the visit results in life, and 75 percent do so in the la 9 ergency department admissions, which has been attributed entirely to em Recent growth in hospital admissions increased by 2.7 million between 2003 and 2009 (Kellermann et al., 2013). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

250 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-15 2012). Approximately 1.1 million EMS transports are covered by hospitalization (Smith et al., st of some $1.3 billion. Medicare annually, at a co represent poor-quality Unnecessary and burdensome EMS transports care for people with advanced serious illnesses. When they presen t at the emergency department, they may be admitted to inpatient care because of an unclear diagnosis; the severity of symptom distress; on of achievable goals for care. nt, a lack of prior clarificati caregiver concerns; and, most importa number of visits by elderly patients whose Emergency departments are experiencing a growing mix of serious medical conditions, cognitive impairments, functional dependencies, complex medication regimens, and caregiver exhaustion make high-quality emergency care extremely difficult (Hwang et al., 2013). Many terminally ill patients return to the em ergency department because they have not been informed and do not know that they are dying or that there are no effective treatments for their underlying disease (Mitchell et al., 2009). They may be unaware of care alternatives, such tive care, or hospice. If EMS providers had as physician house calls, community-based pallia t being paid—when they respond to overwhelmed more options available to them—other than no emergency transfers to caregivers who have panicked and called 911, hospitals might be to training and paying EMS personnel to avoided. Communities are testing new approaches assess and intervene with soluble problems at home, such as a fall without evidence of injury, porting all patients who call 911 to rather than routinely trans the emergency department. Improved “geriatric emergency services” and ot her models for providing more in-home care and ng tested (Hwang et al., 2013). forestalling 911 calls are bei The use of emergency services near the end of life is not limited to elderly individuals. with serious illnesses often face delays in Parents of uninsured or publicly insured children ng care in the emergency department, or they obtaining physician appointments and end up seeki ian (Rhodes et al., 2013). In some parts of the may be referred there by their primary care clinic a general emergency department, where country, critically ill children are stabilized at ondition may be lacking, before transfer to a experience in recognizing a rapidly worsening c specialized children’s hospital for furt her care (Chamberlain et al., 2013). Medicaid reimbursement polic ies, such as lesser payment for ambulatory versus emergency department care, give hospitals in centives that favor care in the emergency hamberlain et al., 2013). or pediatric clinic (C department instead of the hospital’s primary care Finally, once a child is in the care system, fee-for-service reimbursement and the greater pediatric care may create incentives to overtest malpractice litigation concerns associated with and overtreat (Greve, 2011). The Ambulatory Care Environment Physician Services ices, physicians are among the most important As the gatekeepers for almost all other serv y see a physician as many times as re. Under Medicare, beneficiaries ma players in end-of-life ca responsible for a 20 percent copayment for every they wish during a year. However, they may be visit after paying the deductible of $147 (as of 2014). Part B Medicare imposes no restrictions on beneficiary may visit (CMS, undated-c). the type or number of physicians a ten fails to meet the needs of patients and families because Physicians’ end-of-life care of some clinicians may PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

251 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 5-16 • provide care that is overly specialized and does not address the multiplicity of a patient’s diseases or the emotional, spir itual, family, practic al, and support service needs of patients a nd their caregivers; • continue disease treatments beyond the point when they are likely to be effective; discomfort that often accompanies serious fail to adequately address pain and other • the dying process; and chronic illnesses and communication with patients and family • fail to have compassionate and caring members about what to expect and how to respond as disease progresses (Wiener, 2004). These problems have numerous causes. Shor tcomings in physician education regarding end-of-life care are covered in Chapter 4. In ad medicine is focused dition, the overall culture of Reflecting and reinforcing this tendency, the financing on curing acute medical problems. structure of Medicare and othe e performance of a high volume r insurance programs rewards th of services and the administration of well-reim bursed treatments and procedures rather than encouraging the provision of palliative and comfort care. As noted earlier, the general financial incentive within fee-for-service is to see as many patients as possible and to perform multiple pr ocedures. In addition, Congress in 1989 created a physician fee structure of “relative value scales” that takes into account primarily physician time, Medicare, Medicaid, and intensity of service, malpractice insurance, and a geographic factor. many private insurers use this system, which al so financially rewards more complex specialty procedures without regard to patient benefit or cost (MedPA C, 2011). At the same time, the services necessary to help patients and system undervalues the evaluation and management families understand what to expect, to explain th e pros and cons of treatment options, and to establish goals for care as a dise ase evolves (Kumetz and Goodson, 2013). Annual increases in Medicare’s reimbursements to physicians are, in theory, tied to ess via the Balanced growth in the nation’s GDP. This adjustment method, established by Congr owth rate” (SGR), was intended to be cost- Budget Act of 1997 and called the “sustainable gr saving. Opposition to limiting physician fee increases has been so strong, however, that Congress 10 Medicare payment rates fo r physicians already are has not imposed these controls since 2002. rates (Hackbarth, 2009), a about one-fifth lower than private insurance nd any large additional reduction could lead many physicians to stop acce pting new Medicare beneficiaries into their practices (MedPAC, 2011). Because the SGR a pproach could jeopardize older Americans’ to incentivize higher-quality care alatable, and because it fails access to care, it is politically unp and outmoded (Hackbarth, 2013; or control health care spe nding, it is deemed unrealistic Guterman et al., 2013; MedPAC, 2011). Di scussion of its repeal continues. Other Services Although Medicare does not cap beneficiarie s’ hospital admissions or medical and llary services that might substantially benefit surgical procedures, it does cap payments for anci 10 et Office’s (CBO) estimates of future health care costs. CBO is required The SGR distorts the Congressional Budg to base its estimates on current law, and the SGR is current law, even though it is unenforced. In discussing future federal health spending, the Simpson-Bowles commission said, “These projections likely understate [the] true amount, because they count on large phantom savings—from a scheduled 23 percent cut in Medicare physician ccur” (National Commission on Fiscal Responsibility and payments [in 2012; larger thereafter] that will never o Reform, 2010, p. 36). The commission made reforming the SGR its first recommendation in the health arena. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

252 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-17 certain people nearing the end of life—often more so than acu te care and procedures. Such services may forestall hospitalizations, help peop le better manage daily activities, and improve both health status and quality of life (Fa rragher and Jassal, 2012; Eva and Wee, 2010). Limitations on rehabilitation services (includi ng those that aid in mobility, swallowing, and unintended adverse consequen ces for both quality of care communication) may therefore have and health care costs if patients’ re mediable problems are not addressed. Depression, anxiety, and other ment al health issues ar e a significant conc ern at the end of life and may combine with cognitive problems to cloud a person’s last months. Federal rules implementing mental health parity legislati on have erased most long-standing differences between coverage of mental health and other health services for pa tients with Medicaid and those covered by large group health insurance plans (SAMHSA, 2013); Medicare will reimburse outpatient mental health treatm ent (therapy and medication management) at parity with other 11 Part B services beginning in 2014. ices will actually become Whether mental health serv available remains to be seen, however, as many mental health care providers (including psychiatrists) do not accept insura nce at all (Bishop et al., 2014). The Managed Care Environment Managed care was developed and tested in the early 1970s as a way of improving the capitated, integrated provider networks; an quality and affordability of health care through zation review for high-cost serv emphasis on disease prevention; utili ices; and other means. In the organizations receive capitated payments—that approach’s simplest formulation, managed care 12 For is, an annual fixed dollar amount for each indivi dual enrolled in the plan (i.e., per capita). that fee, enrollees receive all their physician care, hospital care, emer gency services, and many other covered benefits, depending on what is included in a specific plan. The managed care s and contracts with (or even organization negotiates with provide rs to achieve reasonable charge ng enrollees healthy and hires) physicians. Capitation, in theory, switches incentives toward keepi overtreatment. avoiding costly care plans offered by private dvantage) plans are managed Medicare Part C (Medicare A insurance companies that cover all Part A and Part B services. In 2012, Medicare Advantage accounted for 23 percent of all Medicare expenditu res (Figure 5-1). Unlike Medicare fee-for- service, Medicare Advantage gives physicians a financial incentive to recommend hospice for an members enroll in hospice, fee-for-service patients nearing the end of life because when pl Medicare becomes the payer. This hospice “car ve-out” makes it attractive for a plan to shift patients likely to be high-cost from its rolls to the Medicare Hospice Bene fit, but also decreases y palliative care services (see Appendix D). the incentive for the plan to develop high-qualit uding managed care programs, may contain In general, health insurance, incl ckest and costliest. Such initiatives require disincentives to enroll people who are the very si careful risk stratification and monitoring to en sure adequate access and protection for these beneficiaries. 11 D must cover certain classes of drugs, including In addition, drug plans operating under Medicare Part health services—such as psychiatric rehabilitation and antidepressants and antipsychotics. Certain intensive mental azelon Center for Mental Health Law, 2012). psychiatric case management—are not covered (B 12 Payments might include some adjustments, such as for patient age and health status or local cost of living. The Balanced Budget Act of 1997 included risk adjustment, based on patients’ diagnoses, to encourage managed care organizations to enroll the sickest Medicare beneficiaries. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

253 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-18 DYING IN AMERICA care Advantage, has embraced Just as Medicare, through Medi managed care partly as a way to avoid the costs of unnecessary hospitalizations, Medicaid has embraced managed care partly to avoid unnecessary nursing home admi ssions. Ideally, these capitated environments best meet the needs of program beneficiaries, should provide models of care and financing that for both Medicare and Medicaid (CMS, 2013b). However, the especially those eligible suring the quality of managed care options for development of policies for implementing and en the dual-eligible population is hampered by sign ificant data limitations , including a lack of timely Medicaid data and comprehensive informati on about dual eligibles en rolled in Medicare Advantage plans (G old et al., 2012). An evaluation of nine state programs of integr ated care for dually eligible beneficiaries, performed for MedPAC, identified several additi onal barriers to the development of managed care programs: • Enrolling beneficiaries in managed care is pr oblematic because of a lack of awareness of such programs, which may contribute to opposition from providers, beneficiary advocates, and others. • Structural design problems include ad ministrative leadership (through Medicare Advantage rather than state Medicaid pr ograms), complications in providing patients with social supports and be havioral health services, and uncertainty regarding whether to create separate pr ograms for people under age 65. • dicaid eligibility, cove Conflicting Medicare and Me rage, and provider rules complicate state efforts to initiate such programs (Verdier et al., 2011). Despite these barriers, models of managed care for dually eligible individuals have shown promise, even if they have not been wi dely replicated. The Ever care model, implemented in five nursing homes (Atlanta, Baltimore, Bo ston, Colorado [Denver/Colorado Springs]) and Tampa) and involving more than 3,600 patients (hal f enrolled in Evercare, half receiving usual care), offered a capitated package of Medicare-c overed services and intensive primary care by nurse practitioners for long-stay, frail, chronica lly ill nursing home patients. Services included customized care planning, coordination, and delive ry. Evercare paid nursing homes an extra fee at might otherwise have for “intensive service days” to handle cases th required hospitalization; tion in the hospitalization rate for enrollees this measure contributed to a 50 percent reduc compared with the usual care group. For those who were hospitalized, stays were shorter for the Evercare group. Evercare enrollees also had half the rate of emerge ncy room visits of the usual ian visits and mental health services (Kane et al., 2002). care group and received more physic Similarly, an 18-month cohort study of 323 re sidents with advanced dementia in 22 Boston-area nursing homes found that managed care enrollees had hi gher rates of do-not- hospitalize orders, primary care visits, and nurse practitioner visits and lower rates of e illnesses compared with traditional fee-for- burdensome transitions and hospitalizations for acut Rates of survival, comfort, ll suggesting higher-quality care. service Medicare beneficiaries—a and other outcomes did not differ significantly between the two groups (Goldfeld et al., 2013). Finally, the Program of A ll-inclusive Care for the Elderly (PACE) offers a void nursing home placements. The program was comprehensive service package designed to a established as a type of provide rough the Balanced Budget Act of r for Medicare and Medicaid th duals with chronic illnesses who are aged 55 1997. PACE serves primarily dual-eligible indivi zed, nonprofit provider model rather and older. It uses a centrali than a looser network of PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

254 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-19 independent practitioners to provi de medical and other clinical se rvices along with the kinds of later in this chapter—such as meals, supportive and personal care services discussed transportation to day centers or other facilities, and in- home modifications. In 2014, 31 states offered the PACE program . Data from 95 of the nation’s 103 PACE e (National PACE Association, projects indicate they serve a total of just over 31,000 peopl nd its effectiveness in serving the specific 2014). Thus, the PACE program remains small, a those nearing the end of life has not been needs of the population requiring palliative care or established (Huskamp et al., 2010; see also Appe ndix D). Moreover, a rece nt analysis found that, grating acute care an d long-term community although PACE improves quality by effectively inte supports and reducing hospitalizations, it ha s not reduced Medicare expenditures for beneficiaries with substantial long-term care need s, perhaps because capitation rates have been set too high (Brown and Mann, 2012). attributed to regul The slow rate of PACE expansion has been atory and financial constraints, poor understanding of the program among referral sources, competition, and rigid the program model (Gross et al., 2004). PACE is a comprehensive structural characteristics of approach, and it requires a sophisticated infrastr be implemented more ucture. Enabling PACE to ys to expand it to the non-M edicaid population, as well as widely might require designing wa other measures (Hirth et al., 2009). The Palliative Care and Hospice Environment A full description of the services involved in and benefits of palliative care, including hospice, is provided in Chapter 2. This section ad dresses the costs of palliative care and hospice compared with usual care and the policies th at regulate the organiza tion and provision of palliative care and hospice services. Palliative Care Palliative care programs focus on relieving the medical, emo tional, social, practical, and spiritual problems that arise in the course of a serious illness. Many seriousl y ill people—not just palliative care, and it can be provided in many those nearing the end of life—can benefit from settings, including the home a nd the nursing home. In hospitals , palliative care teams work yer of support for patients and their families, alongside treating physicians to provide an added la focusing on expert symptom management, skille d communication about what to expect, and planning for care beyond the hospital. As discusse d in Chapter 2, hospital-based palliative care has grown significantly in the la st two decades (CAPC, 2011, 2013). Palliative care is sometimes viewed as an al ternative to what has been termed “futile care”—that is, interventions that are unlikely to he lp patients or be of marginal benefit and may ying which treatments are of margin harm them. Although identif al benefit may be subjective, a medical center found that critical care clinicians themselves study conducted in one academic believed almost 20 percent of thei r patients received care that wa s definitely (10.8 percent) or were based on four principal uynh et al., 2013). These opinions probably (8.6 percent) futile (H weighed the benefits, the treatment could never rationales: the burden on the patient greatly out ould never be able to survive h was imminent, and the patient w achieve the patient’s goals, deat e total annual cost of futile treatment for the 123 (10.8 percent outside the critical care unit. Th of) patients who received futile care was estimated at $2.6 million. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

255 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-20 DYING IN AMERICA At the age of 84, my mother arrived at the emerg ency room in significant pain. During the preceding ider several times about nausea and been assured it three weeks, she had contacted her health care prov at the hospital, she was diagnosed with severely was not significant. Within 36 hours of arriving ng her bones. Even though the source of the cancer metastasized cancer, especially the liver and includi had not yet been identified and no one had discussed th e reasonableness of pursing treatment, a port was ” In the next couple of days, as further testing was installed in her chest for chemotherapy, “just in case. done, she had an instance of unstable heartbeat and she was given medication was taken to ICU, where and her heart rate returned to normal. The hospital ca rdiologist assured us her heart was not a problem, but that he would see her every day while she remain ed in the hospital. Why? All medical staff with an attitude that chemotherapy WOULD be pursued, that they would get consistently pushed ahead o, and no one ever raised the issue of whether her well enough to go home and return for outpatient chem d to press the doctor intensely to get him to such an approach would be futile. My sister and I ha acknowledge that even with chemo, her life expectanc y was well less than a year. Her condition did not d not to pursue treatment (after several bouts of improve over her stay, and a week later she decide explosive diarrhea and an inability to get out of be d) and went home in hospice care. She died two weeks to the day after going to the ER. Even when leaving the hospital, they did not suggest the end was imminent. She had a great deal of testing, implantat ion of a PIC [peripherally inserted central catheter] line, and yet no reasonable analysis of the value of further care from anyone. * ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. The committee agrees with Parikh and colle ague’s (2013, p. 2348) opinion that while “cost savings are never the primary intent of pr oviding palliative care to patients with serious illnesses...it is necessary to consider the financia l consequences of serious illness.” Much of the spending on the sickest Medicare be neficiaries is attributable to hospital care. Hospitals with their expenditures through shorter es have been able to reduce specialty palliative care servic tensive care and lower expenditures on imaging, lengths of stay in the hospital and in in addition, patients re ceiving hospital-based laboratory tests, and costly pharmaceuticals. In palliative care have been shown to have longe r median hospice stays than patients receiving et al., 2008). usual care (Starks et al., 2013; Morris on et al., 2008; Gade Most studies comparing the costs of palliative and usual care have been conducted in the hospital setting, but the differing approaches, met hods, and rigor of these studies make their t methods to assess many of the findings difficult to compare. Ne vertheless, research using robus more mature U.S. palliative care programs shows a pattern of savings and demonstrates the l care (see Tables 5-3 a substantial excess costs associated with usua nd 5-4). A 2012 Canadian 13 similarly found that hospital-based pall iative care teams reduce hospital costs literature review by $7,000 to $8,000 per patient and reduce the cost 40 percent or more of end-of-life care by (Hodgson, 2012). 13 In 2012, the Canadian government allocated $3 million over 3 years to support the development and ed hospice and palliative care models. The Way Forward implementation of a framework for community integrat initiative is led by the Quality End-of-Life Care Coalition of Canada and managed by the Canadian Hospice Palliative Care Association. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

256 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-21 POLICIES AND PAYMENT SYSTEMS TABLE 5-3 Randomized Controlled Trials Comparing the Costs of Palliative and Usual Care Study (Period Number of Patients and Excess Cost of Studied) Setting Usual Care Other Findings Greater patient satisfaction with the care Gade Excess 6-month 517 patients in three hospitals post-hospital receiving interdisciplinary et al., experience and provider communication in palliative care services (275 2008 discharge costs the palliative care than in the usual care group; also median hospice stays of 24 versus patients) or usual care (237) (2002- of $4,855 for 2003) each usual care 12 days, respectively patient (p = .001) Excess costs of Brumley Palliative care recipients were 2.2 times more 145 late-stage patients who likely than usual care recipients to die at received in-home palliative et al., $7,552 for each ergency department care versus 152 who received 2007 home and had fewer em usual care group member (p = visits and hospitalizations; survival usual care in two group- (2002- .03) model health maintenance 2004) differences between the two groups organizations in two states disappeared after data were adjusted for diagnosis, demographics, and severity of illness (Enguidanos, personal communication, 2014) Greer Excess overall Patients receiving early palliative care had 151 patients with metastatic significantly higher quality of life, non-small-cell lung cancer et al., costs of $2,282 receiving usual outpatient 2012 per patient experienced fewer depressive symptoms, were less likely to receive chemotherapy oncologic care with or among those (2006- receiving usual without early palliative care within 2 weeks of death, had earlier hospice 2009) care only enrollment, and survived 2.7 months longer comanagement TABLE 5-4 Observational Studies Comparing the Costs of Palliative and Usual Care Number of Patients and Excess Cost of Usual Setting Study (Description) Care Other Findings Morrison et al., 2008 Intensive care unit (ICU), Excess total costs of 4,908 patients who imaging, laboratory, and $2,642 for each usual received palliative care (observational study pharmacy costs were care patient discharged consultations and 20,551 using propensity score who received usual care higher among the usual matching, 2002-2004) alive (p = .02) and $6,896 in eight geographically care patients for each who died in the hospital (p = .001) and structurally diverse hospitals Excess costs of $4,098 475 patients who Patients receiving Morrison et al., 2011 received palliative care palliative care for each usual care (observational study using propensity score consultations and 1,576 patient discharged alive consultation were more who received usual care matching, Medicaid-only likely than usual care (p <.05) and $7,563 for patients to be discharged in four diverse urban each who died in the patients, 2004-2007) New York State hospitals to hospice (30 percent vs. hospital (p <.05) 1 percent) and less likely to die in intensive care (34 percent versus PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

257 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-22 DYING IN AMERICA 58 percent) 1,815 patients who Starks et al., 2013 Excess costs of $2,141 Some differences between palliative care (observational study received palliative care for usual care patients and usual care groups consultation and 1,790 with lengths of stay of 1- using propensity score comparison patients from matching, 2005-2008) 7 days (p = .001) and remained two academic medical $2,870 for usual care patients with lengths of center hospitals stay of 8-30 days (p = .012) Instrumental variables 606 veterans who Excess costs of $464 per Penrod et al., 2010 (observational study, day for usual care method used to account received palliative care for unmeasured selection 2004-2006) and 2,715 who received patients (p = .001) usual care in five into treatment bias Department of Veterans (Stukel et al., 2007) Affairs (VA) hospitals so has been found to yield cost savings. Palliative care provided in nonhospital settings al palliative care—cohort st A systematic review examined studies of udies (34), randomized zed trials (2), and others (5)—published between 2002 and 2011 controlled trials (5), nonrandomi and conducted variously in hospital-based, home- based, and other program settings. Two-thirds of the studies were based in the United States, and the remainder were conducted internationally, in widely differing health systems. The aut hors found that, although the studies used a broad variety of utilization, cost, and outcome measures and employed di fferent specialist palliative care models, palliative care was “most frequently found to be less costly relative to comparator is statistically significant” (Smith et al., 2014, groups, and in most cases, the difference in cost 1). p. outcomes research on nonhospice outpatient A recent review of published, peer-reviewed palliative care, which included four randomized interventions and a number of nonrandomized studies, concluded that outpatient palliative care produced overall health care savings resulting suggest that such sa rventions. The authors vings are “especially from avoidance of expensive inte important in systems of shared cost/risk, inte grated health systems, and accountable care organizations” (Rabow et al., 2013, p. 1546). Community-based pediatric palliative car e also has been found to produce positive , or at least to be savings (Gans et al., 2012) patient and family outcomes, as well as cost relatively low cost (Bona et al., 2011). dicate potential savings and care settings in These data across varying types of studies from palliative care consultation and comanagement in hospitals and suggest savings in other before firm conclusions can be drawn on the settings as well. Additional research is needed on total health care spending. impact of palliative care delivery Hospice Care ic insurance program intended specifically The Medicare Hospice Benefit is the one publ benefit, the enrolled hs of life. Under this to serve beneficiaries within the last few mont ed except for small deductibles for drugs and beneficiary pays no charge for services receiv provided in the patient’s home by visiting nurses, with variable respite care. Most services are PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

258 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-23 personal care aides, and others. For fiscal additional support from physicians, social workers, reimbursement rates were as follows: for routine home care, year 2014, Medicare’s daily hospice general inpatient care, $694.19; and for $156.06; for continuous home care, $910.78; for 14 inpatient respite care, $161.42 (HHS and CMS, 2013). In addition, the total amount of Medicare payments a hospice prov ider is allowed to receive in a single year is capped according to a defined formula. As described in Chapter 2, hospice services produce many benefits for patients and families. Matched cohort studies demonstrate th at hospice care enhances the quality of care, helps patients avoid hosp italizations and emergency visits, pr olongs life in certain groups of patients, improves caregivers’ well-being and rec overy, and in some reports appears to reduce total Medicare spending for patie nts with a length of hospice se rvice of under 105 days (Kelley 15 et al., 2013a). Enrollment disincentives Built into the Medicare Hospice Benefit and its payment rules are several policies that are intende d to manage program costs but may work against the needs of r families. Two eligibility requirements meant to patients with advanced serious illnesses and thei limit the number of people who qualify for the hospice benefit are an expected prognosis of 6 months or less if • expected course, as the disease runs the 16 certified by two physicians ; and • an agreement, signed by the beneficiary, to give up Medicare coverage for further treatments aimed at achieving a cure. For many patients, these criteria have discour it until the final days aged use of the benef or hours of life and, according to , exclude “many [people] who might benefit Approaching Death from hospice services” (IOM, 1997, p. 169). The ban on “curative” treatments also may hom life-prolonging and palliative treatments— disadvantage patients with organ failure, for w In addition, physicians, re—often are the same. such as diuretics for people with heart failu illing to accept a prognosis of a few months— patients, and family members alike may be unw particularly given the uncertainty in predicting mortality for diseases other than cancer—or to contribute to the brevity of abandon cure-oriented treatment (Fis hman et al., 2009). These factors hospice stays: the median length of stay in hospi ce is 18 days, and fully 30 percent of hospice beneficiaries are enrolled for less than 1 week. Still, the number of Medicare beneficiaries more than doubled between 2000 and 2011, from enrolling in the Medicare Hospice Benefit 0.5 million to more than 1.2 million (MedPAC, 2013). 14 Two percentage points less for hospices that fail to submit the required quality data. 15 Methodological difficulties in analyses of hospice savings include the lack of controlling for selection bias (that is, people who choose hospice care may be different in some way from those who do not) and the impact on the data of both very-long-stay patients and those discharged alive after very long stays, who may have been more appropriate candidates for long-term care prog rams rather than hospice. 16 hs if at the end of the period, they hospice services for longer than 6 mont In reality, patients are able to receive receive a physician recertifica tion of the 6-month prognosis. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

259 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-24 DYING IN AMERICA I am a registered nurse case manager, certified in palliative nursing, working with hospice patients in their homes. I think the single most effective change that could be brought about would be to extend the hospice benefit to a one-year prognosis rather than the current six months. This may allow for a strengthening of the role of palliative care much earlier in the trajectory of life-limiting illnesses, ancers. I think the earlier certain, such as some c particularly those for which the expected course is more troduced, the less intimidating the "end-of-life" connotation of hospice the concept of palliative care is in will be. A patient's course would feel more of a cont inuum, rather than the abrupt shift from treatment to "hopelessness" that now exists. Just last week, I had a visit with a woman who had been referred to hat her death was imminent, even though it is not. hospice by her oncologist, and she was very frightened t Her family was equally upset with the * physician for frightening the patient so. ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. 6-month limit and the ban on cure-oriented Some hospice champions contend that the proving integration and it “a legal barrier to im treatments make the Medicare Hospice Benef ngs and Morrissey, 2011, p. 304). In a survey of collaboration across the health system” (Jenni nearly 600 hospices, 78 percent were found to re strict enrollment in some way, such as by declining to admit patients with ongoing disease treatment needs or without a family caregiver at ). Small hospices are especially likely to restrict enrollment home (Aldridge Carlson et al., 2012 (Wright and Katz, 2007). The flat daily rate allowed for by the Medicare Hospice Benefit—which Payment policies means the hospice receives the same amount rega rdless of how many, or how few, services it e mix of services us provides on a given day—is coming under scrutiny. Th ed to calculate the daily rate is inadequate to cover important se rvices that have emerged since the benefit was designed 30 years ago, such as telemonitoring to facilitate remaining at home, expensive but effective medications and treatments for symp tom distress (palliativ e radiation, long-acting support function, and speech therapy to improve opioids, other medicines), physical therapy to swallowing. Lengths of stay Hospice services have evolved toward serving the two tails of the longevity curve: a large number of beneficiaries enrolled only a few days before death and a large number of very-long-stay patients, with hospice, in effect, serving as an alternative (and one more ovision of long-term care in othe r settings. In some cases, long generously reimbursed) to the pr stays occur because patients improve under hos pice care and outlive their original 6-month prognosis. The high proportion of short stays in hospi ce is troubling on quality-of-care grounds, while growth in very long hospice stays is troubling on cost management grounds. The concern may be encouraging some providers “to pursue arises that incentives in the payment system business models that maximize profit by enrolling patients more likely to have long stays,” some eligibility criteria (MedPAC, 2013, p. 265). This pattern, which of whom may not meet hospice ldridge Carlson et al., 2012), also is hospice providers (A is more common among for-profit believed to explain some hospices’ high rates of “ live discharges” for long-stay patients as the nual cap on Medicare reimbursements. facility approaches its aggregate an A concern is the enrollment in hospice of cognitively impaired nursing home residents. hospice patients, which was 48 length of stay for Medicare mean As a result of this trend, the days in 1998, was 86 days in 2011 (CMS, 2013a; MedPAC, 2013). In 2009, the longest average PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

260 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-25 stays were for patients with Alzheimer’s diseas e (106 days) and Parkinson’s disease (105 days). By comparison, patients with lung cancer had av erage stays of 45 days and those with breast t of patients with stays longer than 6 cancer 59 days (CMS, 2013a). Among the 10 percen th of stay in 2011 was 241 days (MedPAC, 2013). months, the average leng The dominant and countervailing trend of not able concern, however—affecting at least at are too short. According to hospice industry 30 percent of all hospice beneficiaries—is stays th length of stay in hospi median 21.3 days in 2008 to 18.7 figures, the ce has steadily fallen, from days in 2012 (NHPCO, 2009, 2013), which means that half of hospice patients have stays shorter than 18.7 days. Benefit is being used for people with To the extent that the Medicare Hospice questionable eligibility as a de facto palliative care supplement to long-term care benefits under e Hospice Benefit are raised artificially, and state Medicaid programs, the costs of the Medicar the costs of this care are tr ment. MedPAC has recommended ansferred to the federal govern closer program monitoring to fo and greater scrutiny is occurring restall this potential misuse, considered especially appropriate for the (Department of Justice, 2013). Oversight is approximately 10 percent of hospices that ex ceed their benefit cap (MedPAC, 2013, p. 275). The background paper prepared for this study by Huskamp and Stevenson (Appendix D) reviews several potential or propos ed changes to the Medicare Hospice Benefit that would affect hospice-related financial incentives and realign ho spice services. Some of these changes were included in the ACA (see also Huskamp et al., 2010). The Long-Term Care Environment People with multiple chronic diseases and frailt y need a variety of l ong-term services and supports that can improve the quality of their live s, potentially forestall the need for emergency visits and hospitalizations, and reflect individual and family desires for care at home for as long as possible. Someone turning age 65 today has almost a 70 percent chance of needing some type of long-term care services and supports in their remaining years (HHS, 2014), yet few (only about rm care insurance. The 10 percent of the elderly) have private long-te low uptake of existing ons may be attributed in part to private long-term care insurance opti the availability of Medicaid, which provides means-tested “public insurance to many households...who could otherwise afford and would be interested in private insura nce coverage” (Senate Commission on Long-Term insurance requires many people to deplete their Care, 2013, p. 23), and the lack of long-term care 17 The need for new public and private long-term care assets to become Medicaid eligible. insurance options that would stab ilize the financial future of Americans—a neglected corollary eir financing (IOM, 2013e; Wiener et al., 2013)—is to addressing long-term care services and th beyond the scope of this report. Only a third of elderly Americans have suffici 1 year of nursing home ent assets to pay for rivate room and $90,520 for a private room care, which in 2012 averaged $81,030 for a semi-p 3). Home-based care is less expe (National Health Policy Forum, 201 nsive, but still costly. Four hours a day of homemaker and home health aide services, 7 days a week, costs from $28,000 to lable. It is no wonder, then, that long-term $31,000 a year, and such services are not always avai 17 a house serves as the “principal place of residence” of a These assets do not include a person’s home. As long as tives), it is not factored into the Medicaid eligibility Medicaid applicant (or spouse or certain other close rela determination, regardless of its value (HHS, 2005, p. 2). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

261 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-26 DYING IN AMERICA sk faced by the older population” (Spillman, 2012, care has been called “the largest uninsured ri p. 239; Norton, 2013). Many families are caught in the middle: they are too “well off” for Medicaid, but unable needs. This is another to pay out of pocket to meet their personal care reason for relying on the acute care system of 911 calls, emergency depa rtments, and hospitals when care needs become overwhelming. Unlike long-term services and su pports, these much more costly acute care services are covered by Medicare. Medicare’s benefit structure re flects patients’ health care needs as generally understood when the program was created nearly a half-century ago. Today, health and the use of health care services are understood as being influenced by a broad range of factor s beyond those addressed by health professionals or trad itionally covered by health insu rers. There are many ways to improve quality of life and comfort for people wi th advanced serious illnesses and lessen the burden on their family caregivers (Topf et al., 2013) while preventing predictable crises. The resulting savings in costly emergency visits, hospitalizations, and even long-term nursing home care could be redirected toward underfunded and badly needed long-term services and supports (Unroe and Meier, 2013). declined steadily for two years ‐ law died, but only for two weeks. She in We got hospice when my mother ‐ before her death, as we bounced back and forth be ‐ tween hospital, nursing home, and home (with private paid caregivers). It was a bad way to go, with much for her and our family. pain, suffering, and expense the care she needed. Medicare pays for all types of care that is There were too many barriers to getting unbeneficial (911 trips to the hospital, certain test s, treatments, medications, surgeries, and skilled nursing home stays for rehab, etc.). But it will not pay for the care people actually need during chronic, * progressive illness—custodial care, comfort ca re, nursing care. We need to fix this. ________________ *Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C. Institutional Long-Term Care Medicare provides little payment for long-te rm services and supports, including personal ileting, eating, transferring, and daily living (bathing, dressing, to assistance with activities of medication management). Medicare’s sole cont ribution to nursing home care is in paying for short-term skilled nursing services aimed at rehabilitation following hospitalization and for short-term home health care for the homebound with a “skilled need.” Post-acute care accounts for about 21 percent of all spending on long-te rm services and suppor ts (KFF, 2013b), and its goal is to return beneficiaries to the highest possible level of f unctioning. In one analysis, almost a third of Medicare beneficiaries used the skille d nursing benefit in their last 6 months of life, and 1 in 11 died while enrolled in that benefit. Many such patients ma y be too frail or ill to return included a stronger pallia tive care component and home and would be well served if the benefit allowed concurrent hospice care (Aragon et al., 2012). The rehabilitation mission of skilled nursing facilities may conflict with patients’ medical condition and goals, especially in the last months of life, when hospice or palliative care may be e decision to place a patient in better matched to their needs. Th a skilled nursing program may be r rehabilitative servi ces or patient preferences but on built-in based not on a clinical need fo financial incentives. Some families are unable to provide home care for a patient in rapidly difficult choice. They can choose tal discharge they must make a deteriorating health, but at hospi and “rehabilitative” care in a skilled nursing Medicare payment for 100 days of room and board PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

262 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-27 POLICIES AND PAYMENT SYSTEMS facility, but if they want hospice care and do not qualify for Medicaid, they will have to pay out of pocket for nursing home room and board (Aragon et al., 2012). People covered by the skilled nursing facility benefit cannot be enrolled simultaneously in hospice unless the two services are treati ng totally unrelated medi cal conditions. Nursing homes and skilled nursing facilities have an incentiv e to keep people in post -acute care as long as possible instead of enrolling them in hospice b ecause once patients are re ferred to hospice, they Medicare) skilled nursing must shift from the generously reimbursed (by benefit to the poorly ong-term care benefit. reimbursed (by Medicaid) l Nursing homes have an incentive to hospitalize residents repeatedly so as to make them ogram. Indeed, there is some eligible once again for the higher- paying skilled nursing facility pr evidence of disproportionately high rates of pot entially avoidable hospi talizations among dual- eligible residents in skilled nursing facilities and nursing homes (942 per 1,000 person years for s and 338 per 1,000 person years for skilled nursing facility resident nursing home residents). By contrast, people living in the rates of potentially avoidable community had markedly lower hospitalization (250 per 1,000 person years for those receiving Medicaid-paid home- and r those not receiving those only 88 per 1,000 person years fo community-based services, and services) (Segal, 2011). A growing literature is finding that ma ny hospitalizations for patients stem savings (Grabowski a potential source of sy with dementia, in particular, are avoidable and 18 and O’Malley, 2014). As noted earlier, moreover, frequent transitions between the nursing home and hospital and back again are burdensome to patients and have been associated with increased rates of feeding tube insertions, inte nsive care unit stays, pre ssure ulcers, and late onal impairments (Gozalo enrollment in hospice for residents with advan ced cognitive and functi et al., 2011). From the standpoint of financially strapped state Medicaid programs and providers, the e transfer of patients back a cost shift to Medicare and th nd forth between skilled nursing appeal. From the standpoint of th facilities and hospitals has obvious e quality of care for patients and families and the nation’s total health care spending, it reflects both poor quality and enormous costs. Home- and Community-Based Care universally draw Medicare’s line between Because state rules governing Medicaid do not source of paymen health services and supp t for the latter. ort services, Medicaid is the main Additional funding for these services comes th rough Medicaid’s Home and Community Based Services program. ng in Medicaid’s Home and Community By 2009, 3.3 million people were participati ce 2000 (National Health Based Services program, a 60 percent increase in participation sin Policy Forum, 2013). AARP policy analysts are among those who have encouraged states to their case primarily on the gro unds of cost-effectiveness (AARP invest in this program, making Public Policy Institute, 2008). As more people age into their 70s, 80s, and 90s and need daily including in-home home health services, will help, the demand for long-term care services, continue to rise (Employment Benefit Research Institute, 2012). In this context, state Medicaid programs are giving increasing attention to “rebal ancing” efforts aimed at reducing their long- 18 For example, the Evercare managed care demonstration program enhanced advance care planning, provided nurse cing fewer preventable hospitalizations and improved practitioner care, and altered financial incentives, produ survival with no diminution in the quality of care (Kane et al., 2004). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

263 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-28 DYING IN AMERICA standing institutional bias (Kassner, 2013)—that is, shifting long-term services and supports from expensive institutional settings, mainly nursi ng homes, to people’s homes. As illustrated in ts may make sense from the st andpoint of both patient desires Box 5-1, however, while such shif be undertaken with some caution. and program integrity, they need to BOX 5-1 Learning from Past Institution-to-Community Shifts Experience with the community mental health services movement of several decades ago suggests that the shift from institutional to community care should be closely monitored. In the 1960s and 1970s, the nation’s large, old-fashioned, and underperforming mental hospitals ibility for former residents’ continuing service were closed or greatly reduced in size, and respons needs was shifted to community service providers that were neither adequately prepared nor funded to assume this responsibility (Lyons, 1984) . Setting these former patients adrift without appropriate support was a largely avoidable tragedy that contributed significantly to poor-quality care, high incarceration and hospitalization rates, and the rise of substance abuse and homelessness (Baum and Burnes, 1993; Yoon et al., 2013). ly 1980s, the federal government sponsored a series of “During the late 1970s and ear eness of home and community- randomized, controlled...demonstrati ons to test the cost-effectiv sing home care” (ASPE, 2000, p. 10). The National based services as a substitute for nur 19 , th Care Financing Administration (HCFA) Channeling Demonstration, funded by the Heal Administration on Aging (AoA), and the Office of the Assistant Secretary for Planning and Evaluation (ASPE), tested two models for fina ncing and delivering home- and community-based services (Kemper, 1988). The HCFA and the Nati onal Center for Health Services Research 20 sponsored more than a dozen state- or region-specific demonstrations. Major (NCHSR) findings from these projects were as follows: Targeting program enrollment to those at highest risk of nursing home placement • saves money. • Home- and community-based services progr ams can achieve budget neutrality with low average benefit levels (taking into narrow targeting to the highest-risk groups, account the availability of informal s upports), and an emphasis on high-quality services. • Data limitations make designing and conducti ng research that truly measures cost- ing” from one program to another, from effectiveness—as distinct from “cost-shift informal care—nearly impossible. Cost- state to federal funds, and from formal to cally use only Medicaid expenditure data, effectiveness studies of these programs typi and do not consider the impacts of other programs such as Medicare and Social Security Insurance. A recent report summarizing analyses fr om 38 states, conducted between 2005 and 2012, home- and community-based care than for found consistently lower average costs for institutional long-term care. In 2008 in Californi a, for example, “per recipient spending on 19 HCFA is now the Centers for Medicare & Medicaid Services. 20 NCHSR was a predecessor to the Agency for Healthcare Research and Quality. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

264 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-29 nursing facilities was three times higher than for HCBS [home- and community-based services] r HCBS)” (Fox-Grage and Walls, 2013, pp. 6- ($32,406 for nursing facility care versus $9,129 fo 7). However, many states cap the number of pe ople who can enroll in the Home and Community Based Services program, and some states mainta in waiting lists for the program; testimony to the Senate Commission on Long-Term Care suggests th at nearly half a million people are on these p. 16). While the state studies varied in lists (Senate Commission on Long-Term Care, 2013, approach and should be replicated by independent researchers, th ey are important in contributing to state decisions about program policy. The cost impact of home- and community-based services is almost always measured only in terms of Medicaid ex penditures. However, analysts have repeatedly observed the need for a broader analytic framework along several dimensi ons. For example, capturing the true cost side of the equation requires considerat ion of the services’ impact on other public programs, such as Medicare, Supplemental Security Income, and th e Supplemental Nutrition Assistance Program (SNAP). These comprehensive analyses of expend itures and savings have not been carried out cult and expensive. In addition, cost estimates because acquiring the necessary data is too diffi 21 e of unpaid care provided by family caregivers. need to take into account the dollar valu Even if it were possible to assess costs its (effectiveness) and quality adequately, estimating the benef gains of these programs reliably presents an additional set of me thodological challenges. Movement toward alternatives to nursing homes also is supported by federal policy makers. In its 2013 report, the Senate Comm ission on Long-Term Care, established in 2012, toward home care (Senate Commission on Long- urged a shift away from nursing homes and Term Care, 2013). Likewise, the Administration for Community Living, an HHS agency that tellectual and Developmental includes the Administration on Aging and Administration on In Disabilities, emphasizes community options fo r the elderly (Administration for Community Living, 2013). Yet while a wide variety of community-based providers try to help people needing long- and supports create term services and supports, the financing and orga nization of these services k of providers to deliver this support is complex, multifaceted, barriers to access. “The networ ing to the average consumer,” specialized, isolated from other services providers, and confus re (2013, p. 14). Rarely do service providers reported the Senate Commission on Long-Term Ca assess a patient’s and family’s overall needs so th ey can arrange for the right set of services; instead, patients and families have access to what is funded by some mix of federal, state, and local sources, each with its own eligibility rules, limits, and procedures. Just finding out about available services and resources is a significant challenge. An especially serious problem is the structur al and financial isola tion of the system for long-term services and supports from the health services sector. As a result, the planning and on across settings, and there are organization of the two are separa te when patients are in transiti two sets of services, despite their obvious few incentives to integrate or streamline the interdependence and potential synergies. these two service sectors for some patients One possible way to bridge the gap between ve care programs. As Huskamp and Stevenson and families is through community-based palliati point during the course of a serious tive care can be introduced at any (Appendix D) note, “pallia s [sic] help to manage symptoms and maximize advanced illness when a patient and family need 21 iving for community-dwelling elders in the last year of life estimated the For example, a study of family careg ,500 and $42,400 (in 2002), which the authors note equaled the cost of a value of these services as between $22 home aide (Rhee et al., 2009). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

265 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-30 DYING IN AMERICA quality of life.” Insurance coverage fo r hospice—under Medicare, Medicaid, and many commercial insurance plans—is the dominant financing mechanism for community-based palliative care. Models aimed at bridging the gap, such as community-based palliative care, medical homes, house calls or home-based primary care programs, and PACE, have demonstrated effectiveness in improving value ( improved quality leading to lower acute care Komisar and Feder, 2011; Unroe and Meier, spending) (Grabowski, 2006; Kamal et al., 2013; 2013). Finally, if efforts to rebala nce nursing home and home- a nd community-based care are to succeed and more seriously ill people are to be cared for in their homes, home- and community- based care will need to encompass certain medi cal and quasi-medical services. These services include • case management; round-the-clock access to a clinician for advice; • • mental health services; respite care; • • comprehensive interdisciplinary primary care; medication management; and • ng—eating, bathing, dressing, toileting, and support for basic activities of daily livi • through personal care aides. bed, a chair, a wheelchair)— transferring (into and out of Matching Services to Needs for Dual-Eligible Individuals eligible for both Medicare and Medicaid The nearly 10 million Americans who are dually e system. These individuals tend to make up the present a particular challenge to the current car sickest, frailest, poorest, and highest-cost population served by the two programs (Brown and Mann, 2012). Because dual-eligible individua ls are either 65 and older or permanently disabled and on, they often have significant long-term care because they are poorer than the general populati needs (CBO, 2013). As Table 5-5 shows, they account for a significan t proportion (roughly one- percent of Medicaid spending for this group is third) of expenditures for each program. Some 65 of initiatives, including a new for long-term care (Young et al., 20 13). Over the years, a number ter, have been aimed at improving both quality effort under the ACA described later in this chap n by encouraging care in the community rather of care and efficiency for this high-risk populatio than in nursing homes. Dual-Eligible People in Medicare and Medicaid, 2010 TABLE 5-5 Medicaid Medicare Indicator 1 in 6 1 in 5 Share of beneficiaries who are eligible for both programs 36% 33% Program expenditures for people eligible for both SOURCE: Young et al., 2013. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

266 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-31 Health care spending by dual-elig ible individuals varies consid erably. Two in five people receiving both Medicare and Medicaid genera ted lower expenditures than other Medicare beneficiaries, while one in five accounted for th ree-fifths of all dual-eligible spending. Fewer than 1 percent of individuals cost both Medicare and Medicaid high amou nts; most individuals are high cost for only one of the programs (Coug hlin et al., 2012). These findings suggest that s living in nursing homes might be good candidates for palliative care and dual-eligible individual hospitalizations, while others, living in the care management intended to prevent avoidable community, would be good candidates for a medical home or other entity that coordinates and integrates social and medical supports. Program savings resulting from such interventions are most likely to occur among people who have functi y, and/or dementia in onal dependencies, frailt the context of one or more chronic diseases. Efforts to produce Medicare and Medicaid savi ngs in covering dually eligible people have centered on the twin strategi es of enrollment in managed care programs, such as PACE, and use of care management to coordinate care (as di scussed further below). However, many of these e at highest risk and as a resu lt, have not produced the desired efforts have failed to target thos rong evidence that care management might be effective at savings, although they “provide st of dual eligibles, such as reducing costs for some subgroups those with severe chronic illnesses ” [emphasis added] (Brown and Mann, 2012, p. 4). or at high risk for hospitalization Organization of Services ems and burdens accompany each transfer of As described in Chapter 2, significant probl a seriously ill patient from one car e setting to another, and the large number of such transfers as such transfer runs the patients near the end of life has been documented (Teno et al., 2013). Each risk of • poor communication between settings and in adequate transfer of records, including ample, inadequate information about self- advance directives (which results in, for ex redundant tests; duplicate, confusing, or care or perplexing changes in instructions; conflicting prescriptions and medication errors ; and increased risk of falls, infection, and delirium—any of which can harm patients and lead to additional hospitalizations) (Press et al., 2013); poor communication between providers ac ross settings, impeding primary physicians’ • ability to properly manage patients under their care; and • confusion among patients and family member s regarding what to do, which provider is responsible for what, and whom to consult when things go wrong. Better coordination of care is widely perc eived as essential to improving patient outcomes. Not only are people nearing the end of life often treated in several settings, but they (and their families) also interact with numerous physicians and other health professionals, are prescribed multiple medications and treatments that may interact in undesirable ways or be difficult to administer properly, and face logistic al problems in accessing care when they need today, the 2001 IOM report a conclusion still valid such basic services as transportation. In Crossing the Quality Chasm ce of the poorly organized U.S. notes that one serious consequen health system is the “layers of ts and families find bewildering processes and handoffs that patien p. 28). A renewed focus on discharge planning, and clinicians view as wasteful” (IOM, 2001, reconciliation, and avoidance of upport after discharge, medication continued access to care and s PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

267 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-32 DYING IN AMERICA ontinuity across settings in a patient-centered, family-oriented rehospitalizations could improve c way (Coleman et al., 2006). lts in avoidable medical complications and Conversely, inadequate care coordination resu selves cost Medicare some $15 billion per unnecessary hospital readmissions, which by them ously ill children, for example, the lack of year (Tilson and Hoffman, 2012). In the case of seri after-hours coverage in physician offices impels some working parents to seek whatever care is ments (Chamberlain et al., 2013). available, and that is found in costly hospital emergency depart dination takes place outsi de of hospice, it is To the extent any organized attempt at coor typically through “disease management” or more comprehensive “care management” programs. or other health professional Often these programs entail assignm ent of a specially trained nurse to help a patient with complex needs navigate the system across service providers. The success of these programs is highly vari able, depending on their ability to select the most appropriate patients, meet needs around the clock, align suppor tive and medical services , and flexibly adjust nging patient and family needs. Additional key program features the intensity of service to cha are assessment of and support for family car egiver needs; round-th e-clock access by phone; consistent relationships and co mmunication among the care coordi nation team staff, patients, families, and medical providers; integrated assessment and delivery of both medical and social ices and supports (Bass et al., zation of needed long-term serv services; and generation and mobili scussion of supporting services et al., 2012) (see also the di 2013; Brown et al., 2012; Peikes below). If care management initi atives that include such supp ort services can produce savings when serving people with severe chronic illn esses or a high probability of hospital admission, they may also be well suited to people in the fi nal phase of life before they become eligible for hospice. A 15-program randomized controlled trial of the Medicare Coordinated Care ures that appeared to be cen Demonstration identified six feat tral to the limited number of coordination efforts that saved money: • frequent face-to-face cont act between the patient and the care coordinator; • occasional face-to-face contac t between the patient’s physicians and the care coordinator; the care coordinator’s functioning as the • “communications hub” for the patient’s practitioners; • use of evidence-based patient education interventions; comprehensive medication management; and • • a timely, comprehensive response to transi tions between care settings, such as te care (Brown et al., 2012). discharge from a hospital to post-acu gement efforts within the ffectiveness of disease mana A review of studies on the e Medicaid program reveal additional themes: Disease management programs were most effective in improving quality of care and • achieving cost-effectiveness for the sickest patients, including those with targeting interventions to those most comorbidities, underscoring the importance of likely to benefit from them. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

268 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-33 POLICIES AND PAYMENT SYSTEMS • Although in-person care management was th e costliest in tervention, it also was the most effective with high-risk patients , while less intensive management was appropriate for lower-risk patients. • Projects that used data mining and predicti ve modeling to stratify patients by disease severity and risk were “particularly succe ssful in designing and delivering [disease management] programs across chronic disease groups” (Freeman et al., 2011, p. 35). The studies reviewed varied greatly in the medical conditions and program designs llected. Nor were they specifically looking at the addressed and in the kinds and quality of data co needs of patients near the end of life. However, the general profile of patients with functional dependency, with multiple chronic diseases and co morbidities, and at risk of hospitalization and emergency visits was relatively consistent across studies and mirrors the circumstances of people who may be nearing the end of life. Beneficial outcomes of successful care coordination found in these studies included improved medication adherence, reduced hospitalizations and re admissions, reduced emergency visits, and fewer unnecessary medications. And disease management programs that reduced hospitalizations by only 10 percent were able to cover their associated program costs (Freeman noted improvements in the quality of care but et al., 2011). Other meta-analyses have likewise have produced less persuasive evidence on reduced tion, except successes in health care utiliza lowering the risk of hospitaliza tion, and on health care savings (Mattke et al., 2007). However, improvements in quality of care ing costs can be considered that are achieved without increas successes when such high-risk, high-need recipients are being served. In summary, clinician engagement and targ eting and tailoring s upporting services and to be essential elements of integrating them with the medical care delivery system appear successful disease and care management models (Freeman et al., 2011; Meyer and Smith, 2008). Geographic Variations in Service Utilization and Costs Studies of the costs of care in the last months of life have revealed marked differences in the utilization and costs of treat ments from one geographic area to another and from one hospital ttributable in part to local varia tions in the supply and prices of to another. These differences are a medical resources (doctors, nursing home reha bilitation, home care agencies, hospitals, drugs, medical devices, and procedures) (Commonw ealth Fund Commission on a High Performance Health System, 2013) and to a lesse r extent to patient and family characteristics and preferences (Prigerson and Maciejewski, 2012). Medicare payments vary widely among a nd within localities. Per capita Medicare spending (that is, the average amount Medicare pays out per beneficiary) varies more than two- fold among different regions of the country, mainly as the result of differences in the volume of e regional supply of volume differences are th services provided. The greatest influences on physicians and available hospital beds (D artmouth Atlas of Health Care, 2013). An IOM committee recently determined that variation in Medicare spending across and by differences in spending for post-acute care, within geographic areas is explained mainly including subacute rehab re facilities for ilitation in skilled nursing facilities, long-term acute ca ventilator-dependent Medicare be neficiaries, and home health agencies. If these spending variation would drop by 73 percent (IOM, 2013a). variations were eliminated, overall spending re of people with serious advanced illnesses. This finding has important implications for the ca The management of transitions from one setting to another may be a more important cost driver PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

269 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-34 DYING IN AMERICA than has previously been recognized, and “a gr owing body of evidence le ads to the conclusion that clinical and financial integr ation best positions health care systems to manage the continuum of care for their complex populations efficiently” (IOM, 2013a, p. 18). Financial incentives for nursing hom es to hospitalize dually eligible residents (and then to obtain Medicare’s higher post-acu it) are similar nationwide; te care skilled nursing benef ions in preventable hosp italizations for nursing however, state-level data reveal dramatic variat home residents. The lowest rate of such hospi talizations (65 per 1,000 person years) is found in Alaska, and the highest (231 per 1,000 person years) in Louisiana, although this analysis does not control for differences in population health across states (Segal, 2011) . In one consensus of of 19 percent of hospitalizations experts, expressed as a percenta ge of hospitalizations, a median avoidable, with a range across dents are considered potentially of all long-stay nursing home resi (Commonwealth Fund, 2013). states of 7-31 percent related to differences in quality of care Variation in spending does not appear to be e review of the literature, the IOM committee provided or in care outcomes. After an extensiv studying geographic variation in Medicare spen ding found no relationship between quality-of- care indicators and what Medicare paid for servi ces. If people with chroni c illnesses who live in survival or quality of life, one could argue higher-spending areas had better outcomes in terms of that similar resources should be expended in other locales; however, this is not the case (Wennberg et al., 2008; Dartmouth Atlas of Health Care, 2013). To the extent that excessive services do not benefit (and may harm) patients, they therefore significant opportunities for both ry expenditures, and represent wasteful and unnecessa better-quality care and cost saving ronment, with abundant evidence s. Clearly, in the current envi of poor-quality care and national to rise, marked geographic and health expenditures continuing a good focus for analysis of both shortfalls in interinstitutional variations in expenditures may be quality and excess service provision. THE GAP BETWEEN SERVICES PAID FOR AN D WHAT PATIENTS AND FAMILIES WANT AND NEED As noted throughout this report, an approach th at enabled more people to remain in their ith the preferences of life would better align w homes or home-like settings in the final stages of many patients and families than the current syst em. And a significant barrier to improving the the mix of services cu ontrolling costs is that rrently delivered and quality of end-of-life care and c eeds that drive repeated reliance on the emergency paid for fails to provide for precisely those n e-clock access to meaningful he lp, house calls and home care, and acute care systems: around-th caregiver support, and lo ough some states have used the ng-term services and supports. Alth demonstration and waiver authorities under Medicare and Medicaid to create a more rly and people who have disabilities, the nation comprehensive continuum of services for the elde is far from achieving an easily accessible, reliable system of care for people who have advanced y, significant changes in the approach to the end of life. Clearl serious illnesses and are nearing y integrate traditional medical care and social service delivery would be needed to effectivel services. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

270 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-35 POLICIES AND PAYMENT SYSTEMS Impact of Social Supports on Health Outcomes Abundant evidence reveals the pow erful role of social and be havioral factors in health and health spending in contexts other than end-of-life care (U.S. Burden of Disease Collaborators, 2013; Farley, 2009; Marmor et al., 1994; McGinnis and Foege, 1993). Research conducted over several decades has established that health care in itself plays a much smaller role in the health of a popul ation than a range of other f actors related to behavior and socioeconomic status. Indeed, recent analyses at tribute the paradoxically hi gh rate of health care es in the United States relati ve to other developed countries spending and inferior health outcom to the lack of integration of health and social support programs (Bradl ey and Taylor, 2013; Shier 22 et al., 2013). Despite its position roughly in the middle in terms of total social and medical spending per capita, the United States ranks 27 out of 40 in life expectancy, according to OECD data. While the United States is roughly in th e middle relative to other OECD countries in total 23 health and social services sp ending as a percentage of GDP, the ratio of social services ly lower from that of other nations. These spending to health services spending is marked different spending patterns may re flect countries’ different histor ies, cultures, attitudes toward social spending, and political milieus. In a changing health care landscape, new t ools, approaches, and payment models are for providers and health systems to meet the making it easier and more advantageous than ever social needs of their patients (Bachrach et al., 201 4). Interventions that address patients’ social needs have been shown to positively impact patient outcomes and satisfaction with care. nsion of social support for pe The committee supports the expa ople with advanced chronic illnesses with functional debility and careful assessment of ongoing pilot programs focused on doing so (Shier et al., 2013). Much can be learne d from those efforts about the impact of these services on health, as well as the means chosen to determine clients’ service needs, establish all of which can guide future programming. eligibility, manage costs, and ensure quality, The Importance of Social Services rs to a rather modest but essential set of In this report, the term “social services” refe st of commonly needed services part of health care. A core li services not generally considered includes the following: caregiver training and support, • retrofitting of the home for safety and mobility, • • meals and nutrition services, family respite, and • transportation. • 22 The OECD social expenditure database includes nations’ expenditures for such programs as pensions and retirement, home health, and other benefits for the elderly; pensions, sick leave, residential care, and rehabilitation wances and maternity leave (OECD, 2014). for people with disabilities; and family allo 23 .4 percent. By comparison, the figure for Sweden is 33.2 percent and for The figure for the United States is 25 these two categories are Chile, Estonia, Turkey, Korea, and Ireland is 18.2 percent. At the bottom for spending in Mexico, each of which spends a of GDP or less in these two categories. total of 15 percent PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

271 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 5-36 Some of these services are provided through Medicare Advantag e plans and through Medicaid. Some could be provided through expansion of th e Older Americans Act, which currently is underfunded to meet its potential. And some coul d be provided through relatively low-cost, volunteer-staffed efforts if they were implemen ted effectively with training, oversight, and coordination with a person’s needs. For example, health insurance counse ling, legal and financial counseling, and bill payment services currently are offered by many co mmunity organizations programs, and representative payee programs. through volunteers, consumer credit counseling ng component of hospice. Volunteerism is a long-standi Social services may be especially importa nt for the sickest and most vulnerable individuals in a population, whose multiple chroni c conditions, pain and other serious symptoms, functional dependency, cognitive impairment and ot her mental illnesses, frailty, and high family 2010; Walke et al., 2006) converge caregiver burden (Smith et al., to drive the high use of health care services (Komisar and Feder, 2011). Ad equate and relatively inexpensive supporting services could lower demand for expensive health care services for some people nearing the end of life. For example, providing adequate caregive r training, eliminating safety risks in the home, lead to 911 calls, emergency uld prevent many situations that or providing nutrition services co department visits, and hospitalizations (Bachrach et al., 2014; Shier et al., 2013). In addition, sufficient support for caregivers t the burnout that le ads to those calls, at home might preven visits, and hospitalizations, as well as to long- (AoA, undated; Reinhard term institutionalization et al., 2012). Some social services could be provided th rough replication of successful private-sector models in populations served by managed care organizations and, eventually under the ACOs fferent approaches to encouraged under the ACA. In this way, as di providing, tailoring, and targeting social services demonstrated their e ffectiveness, successful models could be expanded to cover additional population groups and to includ e additional services. At present, one of the eligible population, for most promising groups in which to expand thes e models is the dual- unding mechanisms exist. whom both great need and f ial savings that would result ion be paid for? The potent How would such a service expans the cost of expanded services could exceed in the areas of hospital care and emergency supporting services. In addition, some social serv ices themselves might produce net savings. For much less costly than the medical crisis and example, providing an elderly person daily meals is nursing home placement that result from the cons equences of malnutrition (Thomas and Mor, 2013); likewise, providing an air conditioner for an elderly person with asthma is much less expensive than repeat hospitalizations. Whatever menu of social services is availa ble, at the top of the list should be an assessment of patient and family needs, resources, home environment, and receptivity to assistance (Feinberg, 2012), as riate benefits. The Senate well as aid in accessing approp recommended “development and implementation of a Commission on Long-Term Care single care plan across care settings for an standardized assessment tool that can produce a itations” (Senate Commission on Long-Term Care, individual with cognitive or functional lim 2013, p. 43). This approach is the es sence of patient-centeredness. scussed in the following subsections) may not Many of the services listed above (and di be needed every day, and they support the caregiv er as well as the patient. Keeping the family ect and how to handle it, and emotionally supported confident, rested, informed about what to exp ent in the home. Through the grants to states is essential to maintaining a seriously ill pati provided by the National Family Caregiver Supp ort Program under the Older Americans Act, PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

272 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-37 POLICIES AND PAYMENT SYSTEMS supporting services are received by only about 700,000 caregivers annually. States work in partnership with area agencies on aging and other lo cal community-service providers to offer information about and assistance in obtaini ng available services; individual counseling, organization of support groups, and evidence-based caregiver training; re spite care; and limited ng’s national caregiver surveys indicate that supplemental services. The Administration on Agi nxiety, and stress and caregiver depression, a these services improve caregiving and “can reduce enable them to provide care longer, thereby avoi ding or delaying the need for costly institutional care” (AoA, undated). Caregiver Training and Support As described in Chapter 2, family caregiver s are essential in managing the health and social service needs of patients still living at home and bear a strong burden in doing so. Training in the responsibilities of caregiving can he lp. In a large online survey of a nationally ring for family members with multiple health representative sample of almost 1,700 people ca d positive effects on the training they received ha problems, almost half of respondents said the care recipient, including avoiding nursing home placement (p <0.05). Yet such training is, at never received any training regarding medication best, scanty. Some 47 percent of caregivers had 24 management ; 42 percent reported they had to lear n wound care on their own; and 37 percent believed more training would be helpful. (These da ta apply to all caregive rs, not just those caring for a family member near the end of life.) for Safety and Mobility Retrofitting of the Home Publicly funded health programs generally do not cover home modifications for safety n be a dangerous place for patients who are and wheelchair access, for example. The home ca frail or at risk of injuries and for the growing number of patie nts with progressive cognitive disorders. (Fully 80 percent of the care of people with Alzheime r’s disease is provided “free” by family and friends [Horvath et rolled efficacy trial of an al., 2013].) A randomized cont tion and resources to rs easy-to-read informa intervention designed to give informal caregive 0.000) ≤ minimize home injuries found significantly less risky behavior and fewer injuries (p of the high costs of with controls. Because among members of the intervention group compared care for frail elders who experience falls, wanderi ng, injuries in fires, and so on, even “small 25 effect sizes translate into clinically re levant findings” (Horvath et al., 2013, p. 6. Meals and Nutrition Services essential daily activities that become Buying food, cooking, and preparing meals are more difficult when one is caring for someone with an advanced serious illness living at home. Forty-one percent of caregivers in the AARP survey cited above were invol ved in preparing food for special diets, suggesting a need for nutrition counseling. This task involves more than “help nd cooking, more complicated and expensive food with meals,” and may include meal planning a 24 Medication management included administering intravenous fluids and injections. Most care recipients took several medications: almost half took 5-9 different prescription medications, almost 20 percent took 10 or more prescription medications, and almost three-quarters took one or more over-the-counter drugs or supplements as well (Reinhard et al., 2012). 25 ofessional staff time, and not counting the occasional need The intervention was designed to require little, if any, pr bench, the cost per family of the Home Safety Toolkit for a piece of specialized equipment, such as a tub transfer booklet and sample items was $210. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

273 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-38 DYING IN AMERICA shopping, precise measurement, and laborious feed ing for patients who have trouble swallowing. More than half of family caregivers survey ed found mealtime tasks difficult to carry out (Reinhard et al., 2012). supporting services, results of a recent study As a striking example of the impact of e aged 60 and older, home-delivered meals suggest that among ostensibly “low-need” peopl could mean the difference between living at home and needing nursing home placement 26 (Thomas and Mor, 2013). For almost 60 percent of the st udy subjects, home-delivered meals y state increased provided at least half of their da ily food intake. The analysis reveal ed that if ever the number of seniors receiving home-delivered meal s by a mere 1 percent, the resultant decline in the number of nursing home residents would yi eld initial savings to state Medicaid programs overall of more than $109 million per year. Ten st ates would save more than $3 million, and half would save at least $1 million. The fragility of the nation’s food programs fo r the elderly was demonstrated by the 2013 cuts to the nutrition programs under the Older Americans Act resulting from the federal budget sequestration, which expected to lose $41 million in federal funding, equivalent to the cost of 19 million meals (MOWAA, undated). Family Respite The shift to encouraging care at home ca nnot be accomplished successfully without addressing the concomitant need to support family s the point at which caregivers. Burnout “i s and care recipients are at to continue in their caring role caregivers are often no longer able tion” (Lilly et al., 2012, p. 104). Much has been written about the greatest risk of institutionaliza problem of caregiver burden and burnout, but th e programmatic changes and investments that would prevent and ameliorate the problem fa ll short. The Senate Commission on Long-Term Care made detailed recommendations about ways to strengthen supports for family caregivers (Senate Commission on Long-Term Care, 2013, p. 51). Transportation The accretion of family needs not adequately addressed in the community can influence An analysis of factors affecting that decision, the decision to admit a person to long-term care. am for Elders (which serves approximately conducted within the Connecticut Home Care Progr 14,000 state residents aged 65 and ol der), identified a lack of tr ansportation for both medical and nonmedical purposes as one of these factors (Robison et al ., 2012). Existing programs for meeting this need often have limitations, such as across county or other not transporting people assistance in lifting or transferring the patient from home to jurisdictional lines, not providing vehicle along with the transportation, or pe rmitting patients to be accompanied by only certain categories of support personnel. ntal need was tested in the Cash and A proven approach to meeting this fundame cash to disabled beneficiaries with which to Counseling demonstration program, which directed 27 hire and direct their own workers. The program served Medicaid recipients with a range of 26 Among those included in this study, 70 percent were at least 75; 40 percent needed help with bathing, dressing, eating, using the toilet, and transferring into or out of a bed or chair; and 85 percent needed help with light housework, taking medications, managing money, and shopping for groceries. 27 The Cash and Counseling program allowed participants to purchase a range of services. Under the program, at they had the same or an provided by agencies, in th participants “appeared to receive care at least as good as that even lower incidence of care-r on et al., 2007, p. 481). elated health problems” (Carls PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

274 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-39 ally the end-of-life popul e spectrum, not specific ation. In a randomized disabilities across the ag trial, this program showed that moderate to la rge reductions in unmet tr ansportation needs could be accomplished and that participants were highl y satisfied with the transportation assistance ounseling program is now active in 15 states. received (Carlson et al., 2007). The Cash and C Comprehensive Approaches A review of seven innovative U.S. care mode ls suggests ways in which social issues 28 facing people with complex medical needs can be addressed (Shier et al., 2013). The individual projects used different designs and collected different data, yet all showed a number of positive outcomes, including “encouraging indications that greater attention to social supports may benefit patients and payers alike” (Shier et al., 2013, p. 547). All of the programs conducted baseline health and social assessments, develope d individualized care plan s, and made referrals to or arranged for social servic es. They used interdisciplinary care teams, closely involved s. Most also used standardized intervention primary care clinicians, and used electronic record protocols, provided specialized training for service providers, and conducted ongoing monitoring. As these models and others develop under the ACA, their impact on both the quality and costs of care may provide insights to inform the development of new programs. : FINANCING AND ORGANIZATION THE CHANGING HEALTH CARE SYSTEM The financing and organization of the U.S. health care system are undergoing significant -life care. These changes are resulting from the changes that have major implications for end-of ACA, as well as from private-sector payment initiatives and state policies. Changes under the Affordable Care Act Changes in financial incentives and organi zational arrangements resulting from the ACA could have wide-ranging effects on Americans nearing the end of lif e. Specific opportunities arise from the new arrangements that involve risk sharing by Medica re providers, including payments, as well as recently instituted ACOs, patient-centered medical homes, and bundled penalties for 30-day readmissions, hospital mortal ity, and poor patient experience scores. These ssed earlier, in meeting the and other innovations under the AC A have spurred interest, discu needs of the nation’s sickest and most vulnera ble patients in their own homes and communities 29 as an alternative to costly emergency department visits, hospital stays, and institutional care. In addition, the new CMS Innovation Center has the broad goal of working toward better care for patients, healthier communities, and lowe r costs through improvements in the system of ry models, evaluating yment and service delive care. The center’s priorities are testing new pa g with diverse stakehol results and promoting best practices, and workin ders to develop new models for testing. 28 nior Care Options (Boston), HealthCare Partners The models are the Vermont Blueprint for Health, Se Comprehensive Care Program (California), Mercy Hea lth System (Pennsylvania), Geriatric Resources for Assessment and Care of Elders (GRACE) (Indianapolis, Indiana), Care Management Plus (Utah), and the Enhanced Discharge Planning Program (Chicago, Illinois). 29 2-28). For ‒ a related area—cancer care—see IOM (2013d, pp. 2-24 For a detailed list of ACA provisions affecting c statutory provisions, see Meier (2011, pp. 367-369). detailed information that includes citations of specifi PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

275 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-40 DYING IN AMERICA Expansion of Home- and Community-Based Services To accelerate the long-term trend of expanding home- and community-based services, described earlier, the ACA originally include d a Community Living Assi stance Services and Supports (CLASS) Act, which would have in stituted a voluntary, national, federally administered long-term care insurance program. Implementation of this program was abandoned s costs and sustainability (Appleby and Carey, in 2011 because of persistent concerns about it 2011). Medicaid’s continuing in stitutional bias by Nevertheless, the ACA attempts to counter supporting home- and community-based services (Miller, 2012). For example, the Balancing states for increasing a Incentive Payments program provides grants to ccess to noninstitutional care. The “Money Follows the Person” Rebalanc ing Demonstration Grants program has been strengthened and expanded. By the end of 2012, it had helped only a small number of people— around 31,000—with chronic conditions and disab ilities transition from institutions to the community. It now has the participation of 44 states and the District of Columbia (CMS, undated-b). The Financial Alignment Initiative Among the most important provisions of the ACA with the potential to effect major illnesses and to generate cost savings is the changes in care for people with serious advanced establishment of the federal Medicare-Medicaid C oordination Office. This office is charged with facilitating the integration and a nd state Medicaid funding into a lignment of federal Medicare a single source of financial support (CMS, 2013c). Th e office’s State Demonstrations to Integrate aimed at breaking down Care for Dual Eligible Individuals program, st arting in 15 states, is payment silos by providing funds from both programs to an insurer or provi der group that agrees d that may then match these dollars to patients’ to accept risk or participate in shared savings, an social and medical needs (CMS, 2012; Gore a nd Klebonis, 2012). This merging of funding r state Medicaid programs to seek efficiencies streams creates an opportunity and an incentive fo in care delivery for dual-eligible oblematic cost and care shifting individuals, as opposed to the pr that currently occurs. CMS will test two models that can be used In a separate Financial Alignment Initiative, by states to better inte grate primary, acute, behavioral h ealth, and long-term services and supports for Medicare-Med icaid beneficiaries: and a health plan enter into a three-way Under the capitated model, a state, CMS, • ective blended Medicare and Medicaid contract, and the plan receives a prosp payment to provide comprehensive, coordinated care. Under the managed fee-for-service model, • a state and CMS enter into an agreement by which the state can benefit from savings resulting from initiatives designed to improve quality and reduce costs for bot h Medicare and Medicaid (CMS, 2014a). Not all states are expected to pa e that do may find it difficult to rticipate in this program, and thos highest-risk participants. At services and supports for the coordinate medical and long-term e excluded from these alignment projects. present, individuals who enroll in hospice ar PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

276 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-41 Bundled Payments Another policy trend is the development and pr omotion of alternatives to fee-for-service reimbursement so as to “maximize good clinic al outcomes, enhance patient and physician satisfaction and autonomy, and pr ovide cost-effective care,” as well as to promote evidence- based care (Schroeder and Frist, 2013, p. 2029; Rich et al., 2012). A prime example is the development of bundled payment approaches that cover episodes of care. Instead of reimbursing each provider separately, bundled payment system s pay a single price for a bundle of defined and related services from multiple providers associated with a single episode of care. In theory, bundled payments eliminate incentives to maximi ze reimbursement that we re artifacts of the siloed payment system. Depending on which comm unity-based services are included in the dicare and Medicaid. Th bundle, they may reduce cost shifting between Me ey also are expected to provide new incentives for greater care coordination and incr eased efficiency. At present, CMS’s Bundled Payments for Care Improvement Initiative specifically entually be included in , 2013d). These services may ev excludes hospice services (CMS -adjust for the hospice po pulation (Dobson et al., appropriate bundles if ways can be found to risk 2012). The committee notes that new payment a pproaches have almost always been accompanied by unintended consequences as those affected seek to maximize revenues under the ts could create perverse different rules and arrangements. Bundled paymen incentives affecting as incentives to increase the volume of bundled episodes and to health care expenditures, such make greater use of services not included in th e bundle. They could also lead to problems in quality and access, such as stinting on care or sel ecting against patients with higher likely costs (Wilensky, 2014; Weeks et al., 2013; Feder, 2013). Various strategies for forestalling these potential negative effects are bei ng discussed (see Appendix D). Accountable Care Organizations of ACOs, which CMS describes as The ACA encourages the development groups of doctors, hospitals, and other heal th care providers, who come together voluntarily to give coordina ted high quality care to their Medicare patients. The goal of coordinated care is to ensure that patients, especially the chronically ill, ry duplication of get the right care at the right time, while avoiding unnecessa cal errors (CMS, 2013e). services and preventing medi Under the Shared Savings Program, Medicare will continue to pay individual providers r the Medicare fee-for- and suppliers for specific items and services as it currently does unde develop a performance measurement benchmark service payment system. In addition, CMS will to receive shared savings (or, for “pioneer” for each ACO to determine whether it qualifies ACOs [see below] that have elected to accept re sponsibility for losses, whether the ACO will be held accountable for those losses). The benchmark is an estimate of what the total Medicare Parts A and B fee-for-service expenditures would have been absent the ACO and will take into ect health care service needs and other factors that may aff account beneficiary characteristics cial environment or functional status of the (The benchmark does not take into account the so feature is complicated dicaid) (CMS, 2013e). This patient, except that he or she is eligible for Me rs that are not part m seeking care from provide by the fact that ACOs cannot prevent enrollees fro of the ACO. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

277 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-42 DYING IN AMERICA ACOs update the original health maintena nce organization concept and could prove extremely helpful to people with advanced serious illnesses given the importance of effective care coordination to high-quality care, as discussed earlier (B erwick, 2011). Medicare offers several ACO programs: • As of December 2013, the Medicare Shared Savings Program included more than 360 ACOs serving more than 5.3 million Medica re beneficiaries. ACOs and Medicare e growth in health care costs and must share any savings they achieve by lowering th meet established standards for high-quality care. The Advance Payment ACO Model is a supplementary incentive program for • selected participants in the Shared Sa vings Program. It involves 35 smaller ACOs (rural and physician based) that lack access to capital for investing in infrastructure and care coordination. These ACOs receive an advance on the shared savings they are expected to earn that reflects both fixed and variable start-up costs. • Beginning in 2012, the Medicare program in itiated demonstrations that entailed to move more rapidly from contracting with a subset of pioneer ACOs, enabling them a shared savings to a population-base d payment model (see Appendix D). These pioneer ACOs must assume the risk for any losses they incur (that is, if their cost increases exceed those of regular fee-for-ser r locale); however, vice Medicare in thei if their cost increases fall below those of care by a statistically fee-for-service Medi significant amount, they share those savings with the Medicare Trust Fund in the form of bonus payments. In 2011, almost a third of patients in the full comp lement of ACOs were aged 80 or older, and the average (mean) age was 73.5. Sixteen to 17 percen t of enrollees were eligible for Medicaid. Diabetes was their most common chronic conditi on, affecting around 30 percent (Epstein et al., 2014). In their first year of operations, the 32 pi oneer ACO plans did achieve some measurable quality improvements and had mixed financial re sults. Overall, they saw a 0.3 percent cost growth for their nearly 670,000 beneficiaries, co mpared with a 0.8 percent cost growth in fee- evenly distributed across plans, local markets. Savings were not for-service Medicare in the same with 18 achieving below-budget spending and 14 e xperiencing above-budget spending (Patel and Lieberman, 2013). Seven of the plans abandoned participation in the pioneer program and Shared Savings Program, and two abandoned their ACO efforts switched to the regular Medicare entirely, in part because of th eir objections to the program’s qua lity metrics and administrative complexity. Because these programs and markets are in tran sition, it is too early to make more than a health care quality and costs. Nonetheless, preliminary judgment about the impact of ACOs on experience to date suggests that e to many providers, and that the ACO model remains attractiv me reductions in cost most are achieving both quality improvements and so growth. Overall first- rticipating in the pioneer ACO program were year savings for the nearly 670,000 beneficiaries pa h, 2013). These gains were made despite the estimated at $155.4 million (L&M Policy Researc program’s being “incredibly ambitious, even for the most advanced health systems” (Damore and Champion, 2013). policies to encourage more physicians Proposed ACO improvements include new CMS participate, perhaps by rais and Medicare beneficiaries to ing Medicare premiums for PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

278 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-43 POLICIES AND PAYMENT SYSTEMS and improving ACOs’ ability to manage care (Lieberman, 2013). nonparticipating beneficiaries, A specific problem for people with advanced serious illnesses is that beneficiaries placed in post- acute care or institutional settings follow ing hospitalization may no longer belong (or be “attributable”) to the ACO if t hose settings are not participants in the ACO. As a result, ACA- nd costly population. d omit a vulnerable a related efforts to coordinate care coul e Affordable Care Act Other Provisions of th Hospice and home care Changes to hospice under the ACA include a demonstration program ogram to study concurrent care for Medicare on value-based purchasing and a demonstration pr beneficiaries. CMS announced in March 2014 that it will allow up to 30 hospices to participate in a 3-year concurrent care program star ting in summer 2014 (CMS, 2014b). “Concurrent care” would allow Medicare hospice patients to continue receiving cure-oriented treatments. Under hospice and covered by ted, children enrolled in one provision of the act that has been implemen disease treatment (Rau, 2013). Medicaid now can obtain simultaneous care are being reduced. Hospice payments Medicare payments for both hospice and home will decline by 11.8 percent over the next decade—this despite the claims of advocates that hospice’s highly labor-intensive model does not lend itself to the productivity (and savings) 30 gains possible in other components of the health care system. For home care, reductions have , unusually costly “outlier” cases, and annual been instituted for standard episode payments providers may have implications for access to updates. Reduced payments to these community and quality of care for beneficiaries as smaller programs close and larger ones gain incentives to stint on costly treatments. Pay-for-performance In accordance with the principle of pay-for-performance, the ACA penalizes hospitals that experience higher-than-ex pected readmission rate s within 30 days of patient discharge. This policy places a premiu m on discharge planning and coordination of posthospitalization care, but it al public hospitals that treat sicker and so could hurt inner-city poorer patients with fewer family or community resources (Press et al., 2013). Physicians, too, are under greater pressure to provide value, as defined by conformance with both quality measures and cost controls. Gaps in the Affordable Care Act From the standpoint of care of patients w ith advanced serious illnesses, the ACA has several noteworthy gaps: It does not measure or reward greater acce ss to coordinated, compassionate care for • people with advanced serious illnesses. At present, moreover, it specifically excludes hospice beneficiaries from some of the ma jor innovations under the act, which means ir care experiences are being lost. opportunities to learn from—and improve—the care under Medicare Advantage plans, MedPAC has explored carving in hospice • pice costs (Harrison and Neuman, 2013). thereby making them responsible for hos 30 rality Adjustment Factor used to calculate the Medicare This cut is in addition to a phase-out of the Budget Neut reduction in hospice reimbursement of approximately hospice wage index, and will result in an additional 4.2 percent (NHPCO, undated). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

279 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-44 DYING IN AMERICA nt care, which at present remains a gap Doing so might pave the way for concurre under the ACA. a covered service. • The act is not required to include home-bas ed palliative care as The act does not improve prospects for a more ially stable long- effective or financ • term care system that better matches patient and family needs with supporting services. The act establishes no mechanism for reimbursing clinicians for the extensive and • in advance care planning with patients repeated conversations necessary to engage and families or for requiring that they honor patients’ preferences regarding end-of- 31 life care. health care reform, just as Medicare was The ACA is not the last word in this round of the elderly in 1966 (Skocpol, 2010). Even since the not the last word in health care financing for 32 new law’s enactment, health polic y experts have proposed changes, some of which could have a positive effect on care at the end of life if they • were flexible and comprehensive, tailoring th e mix and intensity of services to patient and family needs as they evolve over time; improved accessibility, reaching underserv ed populations and enabling early • dying by establishing required standards for palliative care for those not imminently accreditation and participation in Medicare or Medicaid; • provided for high-quality medical care in the community, through, for example, telemonitoring, round-the-clock access to a nurse, and medication management; uding those described earlier in this provided nonmedical support services, incl • chapter; and r those with advanced serious illnesses, • entailed measurement of quality of care fo sitions, and functional impairments to multiple chronic conditions, frequent tran ensure accountability and transparency. Private-Sector Payment Initiatives Many reform efforts focused on care of people with advanced serious illnesses are taking nd managed care plans are free to experiment place in the private sector. Private insurers a behavior of both enrollees and ing their costs by affecting the broadly with strategies for reduc lly focus only on the latter. A frequent providers, whereas government programs genera shortcoming is the lack of rigorous private initiatives in terms of independent evaluation of these access, quality, and costs. 31 Excellus BlueCross and BlueShield has established an enhanced reimbursement program for physicians trained to for seriously ill patients. This program recognizes the conduct more thorough advance care planning discussions amount of time needed for such discussions and the fact that more than a single discussion may be required. dex.php/for_professionals/molst_training_center/provider_training. http://www.compassionandsupport.org/in 32 “Medicare Essential.” This proposal would combine One proposal would create a new Medicare option called Medicare Parts A, B, and D and supplemental “Medigap” coverage to save costs, improve coordination of care, and promote shared decision making (Davis et al., 2013). Another proposal, developed by the Bipartisan Policy Center’s Medicare Networks as a more full-service alternative to Health Care Cost Containment Initiative, would establish ACOs (Daschle et al., 2013). A new Medicare Comprehensive Care program would be established under another major reform proposal, which also would seek to make Medicaid more “person-focused” (Antos et al., 2013). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

280 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-45 t of the private sector One of the most promising initiatives coming ou —one that meets at least the first three principles on the above list—is conc urrent care, a model that allows patients and disease treatments at the same to receive hospice-like services time. This model avoids the perceived “terrible choice” between conventional treatment and comfort measures. Examples of the concurrent care appro ach include the following: • has a program titled Advanced Illness Highmark, Inc. (Pittsburgh, Pennsylvania) which serves very ill Medicare Advantage Services: Enhancing Care at End of Life, beneficiaries who live at ho me, use outpatient department services, and wish to ognosis receive up to receive palliative care. Patients with an a pproximately 1-year pr 10 mainly consultative home or outpatie or palliative care nt visits by hospice professionals concurrently with disease treatment. d hospice eligibility to patients with a • Blue Cross Blue Shield of Michigan expande than the usual 6, and permits concurrent life expectancy of up to 12 months rather care (BCBSM, 2009). Kaiser-Permanente deploys an interdisciplinary in-home palliative care team to • provide concurrent care. The team include s physicians, nurses, and social workers, desired); bereavement coordinators; home supplemented as needed by chaplains (if al, occupational, and health aides; pharmacists; dietitians, physic speech therapists; model found that patients were satisfied and volunteers. A study of the impact of this with the care they received, and the likelihood of dying at home increased, while italizations declined. The result was emergency department visits and hosp significantly lower costs, afte r controlling for survival, age, severity of illness, and 33 primary disease (Brumley et al., 2007). • ia, has developed an Advanced Illness Sutter Health, based in northern Californ Management program to coordinate pall iative care across settings, including hospitals, physician offices, and patients’ homes. The program also seeks to boost evaluation results included improved hospice utilization and duration. Initial satisfaction on the part of patients, familie s, and physicians, as well as substantial and white patients were equally likely to savings. In this program, African American choose hospice (Meyer, 2011). The Sutter approach retains fee-for-service reimbursement (AHRQ, 2013). • been in place for about a decade, uses a Aetna’s concurrent care model, which has comprehensive case management approach. Nurse care managers with special training in palliative care work with Me dicare Advantage and commercially insured months. They coordinate care, provide beneficiaries having a prognosis of about 12 education and support, and help in symp tom management. Beneficiary and family satisfaction is high. Hospice utiliza tion was more than double for the case group of patients management group (70 percent) compared with a control the program were l costs for people in (30 percent) (Spettell et al., 2009). Medica 33 ter survival in the palliative care group (196 days versus In this study, researchers found a strong trend toward shor ms with randomization between the palliative care and usual 242 days), potentially attributable to undetected proble care groups, how patient preferences may have changed over time, or closer adherence to patient preferences in the r research indicating longer survival in palliative care palliative care group. This result is in conflict with othe programs (Temel et al., 2010; see Chapter 2), and further evaluation of the program model may be necessary to explain this finding. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

281 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 5-46 approximately $17,161—22 percent less than cost s for a matched historical control population ($22,030) (Krakauer et al., 2009). State Policies detail opportunities for states to improve systems of care The committee did not review in e. Clearly, however, state actions in a number of domains can for people nearing the end of lif affect the quality, availability, and costs of care for people with advanced serious illnesses and nearing death (Christopher, 2003). Many states have initiated coalitions to contribute to policy reform at the state level and have engaged in a improve clinical care, variety of activities to on; increase access to quality end-of-life care; program administration, and professional educati increase the proportion of people in the state who have engaged in advance care planning; and support a range of public policies to further these efforts. Twenty-f our state and local coalitions tion’s Community-State Partnerships to were funded under the Robert Wood Johnson Founda Improve End-of-Life Care program (RWJF, 2004). Other examples of state policies that can have a significant effect on end-of-life care include • rules affecting Medicaid eligibility and benefits; rules governing state Medicaid managed care programs; • difficult for recipients to obtain physician low Medicaid reimbursements that make it • care; ities (nursing homes, hospice, home health regulation and oversight of health facil • ng certificate-of-need programs; programs, and hospitals), includi • regulation of emergenc y medical services; • scope-of-practice laws that limit the roles and responsibilities of, for example, nurse practitioners; • programs and policies that support patie nts at home and their caregivers; Life-Sustaining Treatment (POLST; see laws enabling Physician Orders for • Chapter 3) or otherwise coveri ng advance care planning; and • approaches to malpractice enforcement conve ying the impression that providers must “do everything for a patient.” ce liability affect physician Although there is evidence that concerns about malpracti practices, including, for example, th eir adherence to patients’ advan ce directives (see Chapter 3), not be based in fact. A Congressional Budget some physicians’ anxiety about being sued may reforms would reduce national health care Office study estimated that broad malpractice spending by only 0.5 percent (CBO, 2009). To encour age physicians to honor informed patient and family preferences for care at home, stat e harbors” protecting es could establish “saf anted treatments are avoided in accordance with clinicians from liability in cases in which unw fear of malpractice li advance care plans. In general, tigation should not be a compelling practical Family lawsuits against physicians who honored reason to refuse to honor patients’ preferences. stent (Meisel, 2013), and to the essive care are virtually nonexi a patient’s preference for less aggr respected or heard by a or family does not feel contrary, are most likely to occur when a patient physician. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

282 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-47 POLICIES AND PAYMENT SYSTEMS THE NEED FOR GREATER TRANS PARENCY AND ACCOUNTABILITY The IOM report HHS in the 21st Century (IOM, 2009) includes the recommendation that the agency improve accountability, which the report describes as re quiring a systematic approach nes of responsibility; encompassing the establishment of critical, measur able goals and clear li ss; and corrective action regular reporting and assessment to gauge progre as needed. The report vant across HHS, within a framework that defines suggests that this management approach is rele who is accountable to whom and for what purpose. At no time is attention to these tasks more important than when a fundamental overhaul of po licy has been initiated, as has occurred with the passage and implementation of the ACA. As this chapter has shown, pa in Medicare, Medicaid, and st policy initiatives embedded other federal programs have had many unintende d negative consequences —mainly in the forms rdinated services—that have hampered high- of perverse and misaligned incentives and uncoo s illnesses and are nearing the end of life. A quality care for people who have advanced seriou r—to establish whether the system is providing time of change is a time to attempt to do bette value for current patients and to support con tinued improvements in care for patients in the future. The urgency of undertaking this effort rests on the confluence of three major trends impelling change: the rising comple xity and fragmentation of mode rn health care, unsustainable cost increases, and outcomes that do not reflect the system’s potential (IOM, 2013b). The concept of value reflects a relationshi p between quality and costs. A high-value health care intervention is one that is that mark edly improves quality at low cost (for example, immunizations). A low-value intervention is one that is of little to no bene fit (or even harmful) and is high cost. In the current c ontext, it is clear that recurren t hospitalizations for nursing home e. Improving value in hea lth care is of growing residents with advanced dementia are of low valu light of the demonstrably poor quality of care importance to federal and state policy makers in care expenditures. dicaid, and other health despite high Medicare, Me s having diagnostic and treatment tools and Value improvement for clinicians often mean strategies that increase confidence in the effectiveness of their services. To communities and employers, improving value may mean keeping work ers who are family caregivers and their care recipients healthier and more productive at lo wer cost, freeing up funds for infrastructure, education, and other important community activities. And for patients and families, improving value often involves helping them avoid bankrup tcy and meeting their personal goals for care en with a serious chronic condition (IOM, 2010b). and for living as independently as possible, ev or program also is important to these groups because spending a The value of a particular service or programs that might ources for other services great deal on one form of care may leave few res be more beneficial. e system define value differently, the Although different actors in the health car ed per dollar spent to the health outcome achiev fundamental calculus for value in health care is achieve it: If all [health] system participants have to compete on value, value will improve this seems to be, however, improving dramatically. As simple and obvious as value has not been the central goal of the participants in the system. The focus costs and battling over who pays what. instead has been on minimizing short-term The result is that many of the strategies, organizational structures, and practices of PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

283 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 5-48 the various actors in the system are ba dly misaligned with value for the patient. (Porter and Teisberg, 2006, p. 4). Many health policy experts are comfortable spea king in terms of benef it-cost ratios, cost- effectiveness, and comparative effectiveness, but clinicians usually are not trained to think in 34 these terms. Simply making clinicians more aware of the cost implications of their clinical recommendations for individual patients may be un likely to affect their decision making without addition support from clinical guidelines that in corporate a value perspect ive (Ubel et al., 2012). policy makers, professiona ls, and the public to In the context of value and the desire of close the gap between the health system’s potential performance and its current shortcomings, “accurate, reliable, and valid measurements are a prerequisite for achieving and assessing progress in areas such as improving the quality of health care delivered to patients, reporting on the status of the health care system, and developing payment po licies and financial incentives that reward improvement” (IOM, 2013c, p. 2). In general, “quality measures provide objective descriptors of the consequences of care and transform the nebulous concept of ‘good medicine’ . A number of important quality measures into a measurable discipline” (IOM, 2013d, p. 7-2) already exist, as discussed in Chapter 2. The National Quality relevant to end-of-life care related to end-of-life care. almost 200 measures coded as Measures Clearinghouse contains Despite the number and scope of the existing meas ures relating to palliativ e and end of life care, there remain important omissions and limitations to existing measures. Most of the listed setting-specific; good measures measures are either disease- or that apply to the highest-cost, onic conditions and/or functional decline who highest-risk individuals—those with multiple chr receive care across many settings —are lacking. Few of these qua lity measures, however, have ng programs, so they as yet have no role in been integrated into CMS’s value-based purchasi improving care. It would be valuab from value-based purchasing, of le to assess other ways, aside effecting improvements in care, as well as the extent to which CMS’s value-based purchasing programs improve care. Public reporting mechanisms for quality measures related to end-of-life care would be useful as well. ing the end of life, then, will require the Improving the quality of care for Americans near new measures that, for example, development and implementation of • population groups with multiple conditions are more patient-oriented and include receiving care across multiple settings; are typically underserved; • include demographic groups that measure quality for a broader spectrum of patients, including people enrolled in • Medicare Advantage, Medicaid managed care, and hospice and those residing in nursing homes; and family needs, particularly those • take into account a broader array of patient ng services discussed in this chapter; related to the supporti measure the adequacy of support for informed choice by patients and families; • ce with respect to ad enable assessment of system performan • vance care planning, defined variably iritual support, all now shared decision making, and provision of sp across programs and research efforts; 34 the benefits of an intervention must be (QALY) metric commonly used to assess The “quality-adjusted life-years” used with care in the end-of-life context (Yang and Mahon, 2011, p. 1197). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

284 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-49 • track whether care provided accords with patients’ values, goals, and informed preferences; and • capture the full array of costs of care n ear the end of life, including out-of-pocket expenditures and those associated with informal caregiving. Prioritization among existing and new quality meas ures and indicators is likely to be an important future endeavor (Meltzer and Chung, 2014). RESEARCH NEEDS te and use accurate, timely, and up-to-date Learning health care organizations genera e the care they need when they need it (IOM, evidence that helps ensure that patients receiv 2007). System learning can take place—and is need ed—at the level of the individual clinical practice, the health care institut ion, the payer, and various levels of government, from entities as ter to those as large as CMS. small as a neighborhood health cen The measures described above are essential for conducting research that can prov ide actionable feedback to clinicians, payers, and managers and create a lear ning health care organization. In advocating more effective and meaningf ul efficiency measures and incentives, Neuberg (2009, p. 132) says, “It is not sufficient to simply reward savings and hope that quality of quality of care for people nearing the end and outcomes are maintained.” With good measures such as the following can be answered: of life, important research questions • has been demonstrated be life care whose effectiveness How can models of end-of- diffused and adopted more widely? Do the savings in hospital costs achieved by palliative care hold true for total health • care costs? Do they do so if supporti ng services are added to the mix? How are changes in the organization and fina • ncing of the health care system affecting the nature, quality, and costs of care for patients near the end of life? Are there unintended negative consequences, and esp ecially, has the risk of undertreatment increased? What are the out-of-pocket expenses, costs, • and economic impact for caregivers for people near the end of life, and what s upporting services could help minimize and manage those costs? • How can geographic variation in intensity of services be reduced to promote access to the best care without und er- or overtreatment? • What are the experiences of patients with advanced serious illnesses enrolled in Medicare Advantage and Medicaid ma naged care programs, and how do they compare with those of patients having fee-for-service coverage? What meaningful-use criteria re lating to end-of-life care need to be developed so that • emerging electronic health records will collect adequate data on this care? r and target support services to specific What are the most effective ways to tailo • patients and families to meet both their evolving needs and the requirement for program sustainability? decisions about the best contribute to How can patients, families, and the public • design of end-of-life services, and are their views taken into account? PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

285 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life DYING IN AMERICA 5-50 l feared by some clinicians when it is so • Why is the risk for a malpractice action stil low? Moving forward in these areas will require efforts beyond what the ACA has accomplished. In some unintended ways, the ACA may even worsen care for people with serious yments for discrete ions involving bundled pa advanced illnesses if it launches demonstrat episodes of care without integrating long-term services and supports, or if it focuses on c rather than truly community based (Naylor transitional care programs that are hospital-centri et al., 2012). learn how to effect better Health services research is needed to help organizations ttings, especially nursing homes; and homes. For transitions between hospitals; post-acute care se relative contribution of financial incentives, example, it would be useful to determine the communication gaps, and resource shortages to the care provided to nursing home residents with dementia and to the causes of multiple hospitalizations for preventable conditions. Other areas worthy of serious investigation that would directly benefit health care organizations, as suggested by the discussion in th is chapter, would document the contribution of and reimbursement approaches that support palli ative care at supporting services to quality care, between them. Benefiting patients, families, and home and in the hospital with full continuity providers would be research on approaches for attracting more members of vulnerable minority populations to hospice and ways to impr ove services for dual-eligible people. Because of the profound realignment in the U. S. health care system currently under way, ely and actionable. Such research can identify meaningful research is needed that is both tim important modifications and refine l and organizational strategies ments to these evolving financia owing availability of difficult to change. The gr before they become firmly established and more data from electronic health records shoul d facilitate these research efforts. Finally, information about key end-of-life measur es and the results of research need to be made broadly available so that all interested parties can learn from them; can maintain accountability; and can maximize efforts to ensure is compassionate, high- that end-of-life care quality, and affordable for all. , AND RECOMMENDATION FINDINGS, CONCLUSIONS Findings This study yielded the following findings on policies and payment systems to support high-quality end-of-life care. Fundamental Redesign of Medicare and Medicaid in more use of services (hospital days, Incentives under fee-for-service Medicare result that are a burden on ons among care settings intensive care, emergency care), more transiti patients, and late enrollment in hospice, all of which jeopardize the quality of end-of-life care ntation of care, hinder s contribute to fragme and add to its costs. In addition, payment silo al., 2013; Aragon utilization (Teno et encourage inappropriate coordination across providers, and Segal, 2011; Gozalo et al., 2011; Grabowski and O’Malley, et al., 2012; Davis et al., 2012; 2014). PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

286 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life POLICIES AND PAYMENT SYSTEMS 5-51 Integration of Health Care and Social Services Evaluations of programs that integrate health care and long-term social services indicate y reduce hospitalizations and h ealth care costs while improving that the additional supports ma ams financially sustaina ble is an appropriate enrollees’ quality of life. What makes such progr eful targeting of serv reimbursement level, along with car ices to individuals at highest risk of health care utilization (including hospitalizati nts) and tailoring of on and nursing home placeme the services to individual/family needs as they evolve over time. Successful existing models need to be implemented more widely (Brown and Mann, 2012; Brown et al., 2012; Senate Commission on Long-Term Care, 2013; Unroe and Meier, 2013). Expansion of Palliative Care Palliative care interventions, including hos pice, are effective in improving important with most patients’ and families’ informed patient outcomes, providing care more consonant preferences, and potentially re ducing the costs for both public and private payers by avoiding unnecessary hospitalizations and use of intensive care. Changes throughout the health care r providing comprehensive palliative care (Gade system are needed to increase incentives fo od et al., 2010; Rabow et al., Morrison et al., 2008, 2011; Penr et al., 2008; Brumley et al., 2007; 2013; Meyer, 2011; Krakauer et al., 2009). Increased Transparency and Accountability Changes in the payment system under the ACA, as well as any future changes be carefully monitored for their specifically affecting Americans n earing the end of life, need to effects—intended and unintended—on this highly vulnerable population. To this end, relevant quality standards and actionable measures are needed (IOM, 2013b,c; Naylor et al., 2012). Conclusions At present, the U.S. health care system is ill designed to meet the needs of patients near is geared to providing acute care aimed at curing the end of life and their families. The system most people near the end of life prefer. The disease, but not at providing the comfort care with advanced serious most often serve people financial incentives built into the programs that illnesses—Medicare and Medicaid—are not well coordinated, and the result is fragmented care that increases risks to patients and creates avoi dable burdens on them and their families. From a system perspective, fragmented, uncoordinated care and unwanted and unnecessary acute care services—which in the current system constitute “default care”—are extremely costly. At the same time, many of the practical, day-to-day social services that would allow people near the end e most prefer to be, such as caregiver training of life to live in safety and comfort at home, wher rvices, and family respite, are not and support, meals and nutrition se easily arranged or paid for. at integrate health and social services, when The palliative care model and other care models th e, reduce the use of ex properly implemented, may improve quality of car pensive services, and in health care costs for people near the end of potentially help stabilize and even reduce increases life. Many aspects of the U.S. health care system are changing, and these and future changes consequences for Americans of all ages near may have both beneficial and unintended negative sure the transparency and accountability of the the end of life. For that reason, efforts to en programs that serve this population will need to be scrupulously monitored. Much can be learned PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

287 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-52 DYING IN AMERICA y models—such as palliative care—that merit from existing successful programs and care deliver rapid expansion. Recommendation surance and health care deliver y programs should integrate the Federal, state, and private in upport the provision of quality care consistent with financing of medical and social services to s the values, goals, and informed preferences of people with advanced serious illness nearing the end of life. To the extent that additional legislation is necessary to implement this recommendation, the administration should seek a nd Congress should enact such legislation. In addition, the federal government should require p ublic reporting on quality measures, outcomes, and costs regarding care near the end of life (e.g., in th e last year of life) for programs it funds or administers (e.g., Medicare, Medicaid, the Depa rtment of Veterans Affairs). The federal government should encourage all other payment and health care delivery systems to do the same. Specifically, actions should • provide financial incentives for − crease the need for emergency room and acute medical and social support services that de care services, bulatory settings as rs (from hospital to am coordination of care across settings and provide − well as home and community), and improved shared decision making and advance − care planning that reduces the utilization of unnecessary medical services and those not consistent with a patient’s goals for care; alth records that inco rporate advance care require the use of interoperable electronic he • tion of individuals’ wishes across time, settings, and planning to improve communica surrogate/decision maker, (2) patient values providers, documenting (1) the designation of a and beliefs and goals for care, (3) the presence of an advance directive, and (4) the presence of medical orders for life-sustaining tr eatment for appropria te populations; and ysician Orders for Life-Sustaining Treatment encourage states to develop and implement a Ph • nationally standardized core requirements. (POLST) paradigm program in accordance with rd with a person’s values, goals, informed Medical and social services provided should acco at individual service with the expectation th preferences, condition, circumstances, and needs, gh-quality, comprehensive, person-centered, and needs and intensity will change over time. Hi crises that lead to repeated use of 911 calls, family-oriented care will help reduce preventable ons, and if implemented appropriately, should emergency department visits, and hospital admissi dical and related social services aggregate societal expenditures for me contribute to stabilizing and potentially lowering them over time. PREPUBLICATION PROOFS UNCORRECTED COPY: Copyright © National Academy of Sciences. All rights reserved.

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295 Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 5-60 DYING IN AMERICA ca’s health-care prices are ludicrous. Wonkblog. The