2015 EIU Quality of Death Index Oct 29 FINAL

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1 The 2015 Quality of Death Index Ranking palliative care across the world A report by The Economist Intelligence Unit Commissioned by

2 The 2015 Quality of Death Index Ranking palliative care across the world Contents Acknowledgements 2 6 Executive summary About the 2015 Quality of Death Index 9 A note on definitions 10 Introduction 11 14 Part 1: The 2015 Quality of Death Index—Overall scores Case study: Mongolia—A personal mission 19 Case study: China—Growing awareness 20 Part 2: Palliative and healthcare environment 22 Case study: Spain—The impact of a national strategy 28 Case study: South Africa—Raising the palliative care profile 29 Part 3: Human resources 30 study: Case Panama—Palliative 34 care is primary care Part 4: Affordability of care 35 study: in the gaps 38 Case US—Filling study: UK—Dying out of hospital 39 Case 40 Part 5: Quality of care The World Health Assembly resolution 42 Children’s palliative care 44 Part 6: Community engagement 45 Palliative care and the right to die 48 Case study: Taiwan—Leading the way 49 Part 7: The 2015 Quality of Death Index—Demand vs supply 51 Conclusion 54 Appendix I: Quality of Death Index FAQ 56 60 Appendix II: Quality of Death Index Methodology Endnotes 66 © The Economist Intelligence Unit Limited 2015 1

3 The 2015 Quality of Death Index Ranking palliative care across the world Acknowledgements across from care experts palliative interviewed of Death The Quality Index was devised and are greatly time and insights Their the world. by an Economist Unit Intelligence constructed The EIU takes appreciated. sole responsibility for (EIU) research team led by Trisha Suresh. Ebun the construction of the Index and the findings of and Abarshi, Tania Pastrana, Marco Pellerey this report. in building to research Sar contributed Mayecor of this was the author the Index. Sarah Murray Interviewees, listed alphabetically by country: Marco Line was the editor. and David report Jacob, director, Argentinian National Cancer Graciela appendices. Pellerey wrote the country summary Institute, Argentina research, additional provided Ediger Laura Roberto Wenk, director, Programa Argentino de Medicina assisted Wyatt Joseph and writing. reporting Argentina FEMEBA, Paliativa-Fundación and Gaddi Tam was responsible with production for layout. executive policy, Bresnan, Amanda programs manager, and research, Australia, Australia Alzheimer’s this project, throughout For her time and advice Care officer, executive chief Liz Callaghan, Palliative thanks to we would like to extend our special Australia Australia, Asia Pacific Palliative chair, Goh, Cynthia Hospice Committee, Advisory Managing member, Tim Luckett, Care Network. Palliative Trials, Care through Improving Clinical Australia Sydney, University of Technology For their support and guidance in construction McMaster, advocate, Yvonne Australia Push for Palliative, we would of the Index also like to thank Margaret O’Connor, professor of nursing, Swinburne fellow at the Worldwide Stephen Connor, senior Australia University, Palliative Care Alliance, Liliana Hospice de Pelttari, Leena officer, executive chief Hospice Austria, of the International Lima, executive director Austria Care, Association for Hospice and Palliative head, Watzke, Herbert for Society Austrian president, of the Emmanuel Luyirika, executive director Palliative Care, Austria Palliative Care Association, and Sheila African Rumana Palliative & Bangladesh chairperson, Dowla, Payne, emeritus professor at the International Bangladesh Supportive Care Foundation, Observatory on End of Life Care at Lancaster Paul Vanden Berghe, director, Federation Palliative Care University. of Flanders, Belgium Federation Task Force, president, Research Johan Menten, for the construction In addition, during research Belgium Palliative Care of Flanders, this report, the EIU of the Index and in writing © The Economist Intelligence Unit Limited 2015 2

4 The 2015 Quality of Death Index Ranking palliative care across the world coordinator of Ministry for palliative care, Pozo, Ximena of Maria Goretti Maciel, president, National Academy Public Ecuador Health, Care, Brazil Palliative director Children of psychiatry, ElShami, Mohammad Irena Jivkova Hadjiiska, member, Bulgarian Association Hospital Cancer 57357, Egypt for Palliative Bulgaria Care, Yoseph Care and director, associate Azmera, Mamo Yordanov, Nikolay Care Department, head, Palliative Treatment University of HIV-Aids, of California San Diego- Interregional Cancer Hospital, Bulgaria Ethiopia, Ethiopia Hospice director, executive Canadian Sharon Baxter, Surakka, Tiina president of the board, The Finnish Canada Care Association, Palliative Association for Palliative Care, Finland associate Anna Care Division, Towers, professor, Palliative Eero Vuorinen, Finnish Association for president, McGill University, Canada Finland Palliative Care, Maria Alejandra Palma, Continued and Palliative chief, Observatory president, on Régis French Aubry, National Department Care, of Chile Intern Medicine, University France Care, End-of-Life Hospital, Clinical Chile of Chile, University Department Anne Care and de la Tour, head, of Palliative Clínica Margarita D, executive Reyes director, María Chronic Pain, Centre Hospitalier V Dupouy, France Chile Familia, Lukas director, Radbruch, Department of Palliative Cancer Sepulveda, Cecilia Chronic Control, adviser, senior Germany Medicine, University of Aachen, Prevention and Management, Diseases Health World Organization, Chile Edwina Addo, director, Clinical Services, Office of the Centre, Care Resource Palliative International President, of Palliative Care, Department director, Wenwu, Cheng Ghana China Shanghai, Hospital, Fudan University Cancer Family specialist, Mawuli and Public Medicine Gyakobo, Beijing, Hospice, Songtang China Li Wei, founder, Ghana Centre, Health Dodowa Health, Research Medical Union College oncologist, Peking Ning Xiaohong, Care and Support Medicine director, Eva Duarte, Palliative China Hospital, Sanatorio Señora Guatemala Nuestra del Pilar, Unit, Shi Baoxin, Care Research Centre, director, Hospice Lam Wai-man, Kong Hong chairman, of Palliative Society Medical University, Tianjin China Medicine, Hong Kong Wang Chinese Association for Life Care, Naning, nurse, Gábor Benyó, House, Tábitha director, medical Hungary China pain and Bhatnagar, head of anaesthesiology, Sushma Palliative Care president, Hernandez, Carlos Juan Institute of Medical Dr Sciences’ All India Care, palliative Association of Colombia, Colombia Hospital, Cancer Institute-Rotary B R Ambedkar India Care Group, León, Marta chief, Pain and Palliative Research Oncopathology director, Asadi-Lari, Mohsen de La Sabana, Universidad Colombia Iran of Medical Iran University Sciences, Centre, Caja Fernández, president, Brenes Auxiliadora María Al-Jadiry, Mazin Faisal doctor, Oncology Unit, Children Costarricense de Seguro Social, Costa Rica University, Baghdad Hospital, Teaching Welfare Iraq Care, Martin Lou č ka, director, Centre for Palliative Czech School Netta Steyer Bentur, associate professor, Stanley Republic for Health and Myers- Professionals, Tel-Aviv University Committee, Ond ř ej Sláma, co-chair, Local Organising Israel JDC-Brookdale Institute, Czech Society for Palliative Medicine, Czech Republic Floriani Caraceni, and Hospice Augusto Virgilio director, Department Mai-Britt Guldin, postdoctoral researcher, of Palliative Institute Cancer National of Milan, Care Unit, Health, Denmark Aarhus University, Italy for Rehabilitation Centre director, Timm, Helle Knowledge of Palliative Society Italian Carlo president, Peruselli, Denmark and Palliative Care, Care, Italy consultant, Tove Vejlgaard, Palliative Care Specialist Villa Speranza, Adriana Turriziani, director, Hospice Denmark Vejle, Team, Università’ Italy Cuore, del Sacro Cattolica Santo Gloria Castillo, doctor, Palliative Care Unit, Japan professor Keio University, emeritus, Naoki Ikegami, Dominican Republic Domingo, © The Economist Intelligence Unit Limited 2015 3

5 The 2015 Quality of Death Index Ranking palliative care across the world chief executive officer, Hospice and Palliative Liz Gwyther, Care Palliative Jordan chairman, Bushnaq, Mohammad of South Africa, Care Association South Africa Jordan Society, Joan Children’s International executive, chief Marston, Zipporah Ali, executive director, Kenya Hospices and South Africa Palliative Care Network, Kenya Palliative Care Association, Yoonjung care Branch, & Palliative Hospice chief, Chang, Malawi co-founder, Ndi Moyo Hospice, Lucy Finch, National Cancer Center, South Korea Council, Hospice Malaysian Lim, chairman, Richard Supportive Maria Palliative Nabal, Care Team, head, Malaysia Spain Arnau Universitario Hospital de Vilanova, coordinator, programme Castañeda, Care Celina Palliative Association Spanish Gil, former Rocafort Javier president, Mexico Institute, Security for the Mexican Social for Palliative Care, Spain Palliative Mongolian president, Davaasuren, Odontuya Jayasuriya-Dissanayake, Nishirani Lanka national Mongolia Care Society, officer, professional Noncommunicable Diseases, World Center Mati Nejmi, coordinator, of Pain and Palliative Organization, Health Sri Lanka Morocco Bin Zaid, Care, Hôpital Cheikh Khalifa Ajantha Sevana Shantha chairperson, Wickremasuriya, professor, Wim J.A. van den Heuvel, Medical University Sri Lanka Hospice, Netherlands of Groningen, Centre, University of Radiation Unit of Department Axelsson, Bertil Sciences, Bregje leader, programme Onwuteaka-Philipsen, Sweden University, Clinical Research Centre, Umeå and Care Research, for Health Quality of Care, Institute Peter of professor, Department consultant, Strang, Netherlands Oncology-Pathology, Sweden Karolinska Institutet, physician, Christchurch Kate Grundy, palliative medicine of Palliative Care, Bern Steffen Eychmüller, doctor, Center Hospital, New Zealand Hospital, University Switzerland Society of president, for the Study Olaitan Soyannwo, Ullrich, senior Control, Cancer officer, medical Andreas Pain, Nigeria Department Promotion, and Health Diseases of Chronic Rosa Buitrago, vice dean and professor, School of Switzerland Organization, World Health University Pharmacy, of Panama, Panama College, Medical professor, Chao, Chantal Co-Shi National Gaspar Da Costa, national coordinator, National Palliative Cheng Kung University, Taiwan Panama Care Programme of Panama, Taiwan National emeritus, professor Chen, Ching-Yu Medicine Mary Berenguel, chief, Department of Palliative Taiwan University Hospital, Peru and Pain Management, Oncosalud-AUNA, chairman, Chen, Rongchi Care Foundation, Hospice Lotus head, Maria Cancer Care Unit, Palliative Manalo, Fidelis Taiwan Philippines City, Center, The Medical Network founder, Taiwan Research Sharlene Cheng, of Palliative Wojceech Leppert, chair, Department of Hospice Medicine, Council, Taiwan Academy Palliative of Medical Poznan University Sciences, Poland Medicine, Taiwan director, Gonçalves, Ferraz José António medical chief, Hospice Palliative Care Center, Sheau-Feng Hwang, of Oncology, palliative Institute Portuguese care unit, Hospital, Taiwan General Taichung Veterans Portugal School Siew Tzuh Tang, professor, Chang Gung University and Palliative Jenny Rico Hospice Puerto president, Olivo, of Nursing, Taiwan University Hospital, Taiwan Care Association, Puerto Rico at Tzuchi Yingwei Wang, director, Heart Lotus Hospice chairman, Novikov, Georgiy Care Russian Palliative Taiwan General Hospital, Russia Academy, Muganyizi, Tanzanian Elias Johansen director, executive Pediatric founder, Tkachenko, Alexander St. Petersburg Tanzania Palliative Care Association, Care Hospital, Russia Palliative president, Pairojkul, Thai Palliative Srivieng Care Society, chief executive, Yung, Hospice Vanessa Singapore Thailand Council, Singapore Department of Palliative anaesthetist, Kahveci, Kadriye Department Kristina Krizanova, head of Palliative doctor, Turkey Hospital, Ulus State Care Center, Slovakia Institute, Oncology National Medicine, © The Economist Intelligence Unit Limited 2015 4

6 The 2015 Quality of Death Index Ranking palliative care across the world care, and palliative of hospice director Casarett, David Makerere University Elly Katabira, of medicine, professor US University of Pennsylvania Health System, Sciences, College of Health Uganda Barbara Coombs Lee, president, Compassion & Choices, & Public Intelligence Simon Chapman, director, Policy, US National UK Care, for Palliative Council Affairs, Mark Lazenby, assistant Yale School of nursing, professor Richard Cicely Programmes, African director, Harding, of Nursing, US Saunders International, UK Palliative to Advance Centre director, Meier, Diane Care, executive, UK, UK chief Hospice David Praill, former US in palliative lecturer clinical Sleeman, Katherine Tulsky, chair, Department of Psychosocial Oncology James UK medicine, King’s College London, Dana-Farber Institute, and Palliative Care, US Cancer PhD Programme, Steedman, Mark manager, End-of- Palliative Holly Yang, director, International assistant Life Care Forum, Institute of Global Health Innovation, Medicine of Palliative Institute Program, Fellowship UK Imperial College London, US Hospice, Medicine, San Diego UK, national director, Ros Taylor, Hospice Care at Hospice director, Patricia Cancer National Bonilla, programme UK Institute, Venezuela Venezuela, director, Program Health Tymoshevska, Viktoriia Public Thanh Care Department, Palliative Quach head, Khanh, International Initiative, Foundation, Renaissance City Oncology Vietnam Hospital, Ho Chi Minh Ukraine coordinator, national Lumbwe, Njekwa Care Palliative Eduardo García Yanneo, chairman, Latin American of Zambia, Alliance Zambia Uruguay for Palliative Association Care, Care and Palliative Hospice Eunice Garanganga, director, director and chief medical officer, Ira Byock, executive Association, Zimbabwe Providence Health & Services, Institute for Human Caring, US © The Economist Intelligence Unit Limited 2015 5

7 The 2015 Quality of Death Index Ranking palliative care across the world Executive summary communicable diseases such as heart disease death, Everyone hopes “a for a good or rather, 1 for palliative and cancer are on the rise. The need good life to the very end” , but until recently In set to rise significantly. care is also therefore effort and investment there dedicated was little we compare analysis supplementary expected and education the resources that to provide growth in the “demand” for palliative care to the Public that possible. would make engagement (as shown country in existing “supply” for each interventions the quality to improve and policy their is The demand rankings). Index analysis of death through the provision of high-quality of disease, of the burden on forecasts based old- in palliative care have gained momentum and rate of population age dependency ratio, recent years, and some countries have made ageing over the next 15 years. affordable to strides great access in improving The Economist Unit’s palliative care. Intelligence Despite reveals, the improvements this research of Death Index, commissioned by the Lien Quality Even top-ranked more much to be done. remains Foundation, highlights those advances as well as nations struggle to provide adequate currently the remaining and gaps in policy challenges and Cultural citizen. for every care services palliative infrastructure. shifts a mindset are needed that as well, from treatments prioritises to one which curative This is the second edition of the Index, updating care approaches that regard palliative values and expanding the first iteration, which upon dying to seeks and which process, as a normal was published in 2010. The new and expanded enhance patients and quality of life for dying 20 80 countries evaluates Index 2015 using families. their and qualitative across indicators quantitative five categories: the palliative and healthcare Key findings of our research include: the affordability resources, human environment, of care and the level of of care, the quality l The UK has the best quality of death, and the the Index To build engagement. community As in 2010 rich nations tend to rank highest. research official EIU used for data and existing of Death Quality first in the 2015 the UK ranks palliative and also interviewed country, each Index, thanks to comprehensive national care experts from around the world. the extensive of palliative policies, integration Health care into its National and a Service, In many countries, the proportion of older the movement. hospice strong It also earns and non- is growing in the population people © The Economist Intelligence Unit Limited 2015 6

8 The 2015 Quality of Death Index Ranking palliative care across the world care into palliative that integrate frameworks of care. in quality In general, income top score whether healthcare their systems, through are a strong levels indicator of the availability a national health like the insurance scheme with wealthy and quality of palliative care, control UK or Taiwan, or through cancer clustered countries at the top of the Index. and Japan. such as in Mongolia programmes and New Zealand Australia and second come results: tangible Effective policies can create third overall, and four other comparatively for national the launch of Spain’s strategy, rankings achieve rich Asia-Pacific countries example, led to a 50% increase in palliative in the top 20: Taiwan at position by six, joined regional care teams and unified approaches. Singapore Korea at 14, and South at 12, Japan European at 18. Otherwise, countries dominate l Training for all doctors and nurses is the top 20, with the addition of the US and essential for meeting growing demand. In at positions Canada 9 and 11, respectively. such as the UK and high-ranking countries is a required care expertise palliative Germany l Countries with a high quality of death share and specialised of both general component several characteristics. The leading countries while several top- medical qualifications, have the following elements in place: scoring countries have established national • A strong and effectively implemented systems. accreditation Countries without framework; national care policy palliative a experience resources training sufficient • High on spending of public levels while shortage severe general of specialists, services; healthcare medical staff may also lack the training to use resources • Extensive care training palliative analgesics appropriately. opioid for general and specialised medical workers; l Subsidies for palliative care services are necessary to make treatment affordable. subsidies • Generous to reduce the financial national Whether or insurance through of palliative care on patients; burden schemes charitable or through pension • W ide availability of opioid analgesics; (such as in the UK), without funding financial • S trong care. of palliative awareness public support many patients are unable to access of care. adequate The top scorers in terms l Less wealthy countries can still improve Belgium, affordability of care—Australia, standards of palliative care rapidly. Although and the UK—cover 80 to Denmark, Ireland, developing are still unable many countries 100% care. for palliative costs of patient due to pain management basic to provide in staff and basic infrastructure, limitations l Quality of care depends on access to opioid with lower countries some prove levels income analgesics and psychological support. the power to be exceptions, demonstrating in the index In only 33 of the 80 countries initiative. and individual For of innovation are opioid and available freely painkillers example, Panama is building palliative care countries to access accessible. In many Mongolia care services, into its primary has is still hampered opioids by red tape and legal in hospice growth and facilities seen rapid restrictions, lack of training and awareness, has made and Uganda programmes, teaching The best care also includes and social stigma. huge of opioids. in the availability advances inter-disciplinary teams that also provide support and spiritual psychological and National policies are vital for extending l in decision- physicians patients who involve Many access to palliative care. of the care choices. their and accommodate making policy have comprehensive top countries © The Economist Intelligence Unit Limited 2015 7

9 The 2015 Quality of Death Index Ranking palliative care across the world population, to an older shifts demographic l Community efforts are important for raising of incidence combined with the rising awareness and encouraging conversations non-communicable like diabetes, diseases about death. Coalition Matters The Dying and cancer, additional will create dementia for Council set up in the UK by the National struggle pressure for countries that already to a global Care, Palliative of informal movement meet demand. and the US-based Cafés, Death called meetings to Conversation Project encourage people a series of policy sparked Index 2010 The EIU’s and openly their discuss end-of-life wishes debates over the provision of palliative care Use dying. about the conversation normalise Since around the world. then, several countries by media and social newspapers of television, have made significant advances in terms of government and non-profit groups in many Colombia, national Denmark, Ecuador, policy. countries—for Brazil, and instance Greece, Finland, Italy, Japan, Panama, Portugal, Russia, also helped to make in headway Taiwan—has and Uruguay Sri Lanka, Spain, Singapore, Sweden care. of palliative awareness mainstreaming have all established new or significantly updated laws or national guidelines, programmes, and Palliative care needs investment but offers l such as Brazil, Costa Tanzania Rica, countries savings in healthcare costs. from Shifting of developing are in the process and Thailand health strictly curative interventions to more The momentum their own national frameworks. of pain and symptoms holistic management level being gained on palliative care at a policy can reduce the burden on healthcare systems by the international strengthened has also been treatments. but futile and limit use of costly at the 2014 resolution Assembly Health World a has demonstrated Recent research for the integration care into of palliative calling statistically significant link in use of palliative systems. national healthcare a fact several care and treatment cost savings, have recognised countries high-ranking in will need to craft its own unique country Each care services. their bids to expand palliative the most approach by identifying significant addressing regulatory and resource gaps, l Demand for palliative care will grow rapidly partnerships constraints, and forming between in some countries that are ill-equipped to academia, government, groups. and nonprofit and meet it. Countries like China, Greece and culture, but Approaches will vary by context Hungary and rapidly supply with limited objective a better of enabling share the overall increasing demand will need active investment quality death. facing of life for patients generally, More needs. public to meet © The Economist Intelligence Unit Limited 2015 8

10 The 2015 Quality of Death Index Ranking palliative care across the world About the 2015 Quality of Death Index that an Index the EIU developed In 2010, of care (30% 6 indicators) weighting, l Quality ranked and affordability the availability, 2 weighting, (10% engagement l Community The quality of end-of-life care in 40 countries. indicators) which Index, by the Lien was commissioned philanthropic Foundation, a Singaporean Each indicator in a weighting is allocated organisation, consisted of 24 indicators in a its category, and each category is given four categories. garnered much The study 1 to 6 of Index. in the overall weighting Parts of policy a series and sparked attention debates results in turn the overall consider this paper of palliative over the provision and end-of-life of the five categories. for each and scores care around the world. As a result, the Lien the EIU also prepared This year, a of the a new version commissioned Foundation assessment for supplementary of the need its scope to expand and take into account Index palliative care provision, to enable assessment global developments in palliative care in recent the of the “demand” for such care alongside years. in the main revealed quality Index. of “supply” version, the number In this, the 2015 of categories: on three This is based from 40 countries increased has been included l The burden of diseases for which palliative focuses which to 80. The Index, on the quality (60% care is necessary weighting) care to adults, of palliative and availability differently is also structured from the 2010 l The old-age dependency ratio (20%) (meaning of comparison the direct version Now, is not possible). years between scores the of the population l from The speed of ageing Index is composed of scores in 20 quantitative 2015-2030 (20%) five categories. across and qualitative indicators The results of this analysis are discussed in Part are: The categories 7. (20% environment and healthcare Palliative l detailed more of the A explanation 4 indicators) weighting, and the demand the Index behind methodology calculation, score asked and a list of frequently resources 5 Human (20% l weighting, questions about the construction, composition indicators) are included of the research, and limitations as 3 Affordability of care (20% weighting, l appendices to this paper. indicators) © The Economist Intelligence Unit Limited 2015 9

11 The 2015 Quality of Death Index Ranking palliative care across the world A note on definitions the The Quality of Death measures Index to hasten neither • intends or postpone death; quality in to adults of palliative care available • integrates and spiritual the psychological “palliative the terms Although 80 countries. care; aspects of patient care” of life care” are sometimes and “end used interchangeably, to taken is often the latter to help patients system a support • offers live only in the final stages mean care delivered until as actively as possible death; of a terminal illness. The Index is designed to by the World care as defined palliative measure system a support • offers to help the family Organization: Health illness during cope and in their the patients own bereavement; care is an approach “Palliative that improves a team • uses the needs to address approach of life of patients the quality and their families and their families, including of patients the problems associated with life- facing counselling, bereavement if indicated; threatening illness, through the prevention by means and relief of suffering of early of life, and may also enhance • will quality identification assessment and and impeccable of illness; the course influence positively treatment of pain and other problems, physical, psychosocial care: Palliative and spiritual. of illness, in the course early • is applicable with other that are therapies in conjunction • provides relief from pain and other life, such as chemotherapy intended to prolong distressing symptoms; or radiation therapy, and includes those understand and investigations needed to better dying as a normal • affirms life and regards 2 manage distressing clinical complications.” process; © The Economist Intelligence Unit Limited 2015 10

12 The 2015 Quality of Death Index Ranking palliative care across the world Introduction care is palliative better (Given palliative care. to work the world across As governments available in richer with older countries generally improve life for their citizens, they must also populations, this rises to 27% of the population how to help them It is a die well. consider 91% of the aged 65 or over. The Index covers not to be underestimated. challenge In many 5 aged over 65. population global of those make up an ever-growing countries, people older ) the proportion Meanwhile, of the population. the WHPCA estimates that globally Separately, diseases, of non-communicable prevalence such 10% of those palliative who require care under 6 dementia and cancer, diabetes, as heart disease, it. receive actually The biggest Taken this means rapidly. is increasing together, that problem Even countries that do well in the Quality those care is set to rise for palliative that the need is that our persists meet cannot Index of Death of all the needs sharply. those palliative care, with evidence of requiring healthcare systems “We’ve unprecedented changes in the seen to emerge in nations that— continuing shortfalls are designed to population way the world with more is moving, sophisticated highly in relative terms—have care acute provide over the age of 65 than under the age people services. we need when what fellow at of five,” says Stephen Connor, senior is chronic care. tops the overall Index. In Take the UK, which the Worldwide Hospice Palliative Care Alliance still the case That’s by the Parliamentary May 2015, an investigation (WHPCA). “That’s never happened in human almost everywhere into complaints Ombudsman Service and Health history to continue to get and it’s going before in the world. end-of-life care highlighted 12 cases about pronounced.” more problems it said illustrated it saw regularly in 7 countries ill-equipped woefully remain Yet many its casework. poor included Failings symptom Stephen Connor, senior fellow, appropriate services to these citizens. to provide poor and planning, control, communication Worldwide Hospice Palliative years Despite improvements and greater in recent not responding of the dying, to the needs Care Alliance attention just 34 countries have to the issue, in and delays inadequate out-of-hours services 3 above-average for treatment. diagnosis and referrals Quality of in the 2015 scores Death Together these account for just 15% Index. The fact that the UK, an acknowledged leader of the countries population adult of the total in palliative adequate care, is still not providing (which in the Index account themselves for underlines the services for every citizen 4 population) 85% of the global adult , meaning challenge facing all countries. Because while lack access the vast majority of adults to good © The Economist Intelligence Unit Limited 2015 11

13 The 2015 Quality of Death Index Ranking palliative care across the world “A key factor limiting research is that it’s really of people numbers are living longer, greater poorly says Katherine Sleeman, clinical funded,” they are not necessarily health. so in good doing medicine in palliative at King’s College lecturer Often illnesses, making the several they may have London. “This is something that arguably will more and demanding of dying process drawn-out person every and yet we invest single affect increasingly of treatment. complex forms almost nothing in trying to work out how to do it burden a heavy This places on healthcare better.” of which most to adapt— systems, are struggling worrying, More developing countries are many and one of the hardest shifts to make is cultural. to offer basic pain management, leaving unable “The biggest problem that persists is that our of people millions death. an agonising dying acute to provide are designed systems healthcare care,” is chronic what care when says Dr we need evidence of innovation is coming Nevertheless, still the case almost “That’s Connor. everywhere quarters. from unexpected and Panama Mongolia in the world.” (in positions in the Index), 28 and 31 respectively are showing that even less wealthy countries that country This is also true in the US, another This is something the availability and quality can increase of care, systems “Our health well in the Index. performs that arguably will quickly. relatively and on diagnosing diseases and treating focus every affect single the needs negligent are demonstrably in meeting person and yet it comes And when to the availability of these through going and families of patients we invest almost in advances has made Uganda morphine, striking executive says Ira Byock, experiences,” difficult in trying nothing to through partnership pain control a public-private director of the Institute officer medical and chief out how to do work Africa between the health ministry and Hospice for Human Caring at Providence Health & Services it better. founded institution a pioneering Uganda, by . of the book, and author The Best Care Possible for the 2014 Anne Merriman—a Nobel nominee “The government now supports Prize. Peace to cope struggle is that as countries The irony Katherine Sleeman, clinical to anyone who the availability of oral morphine with rising healthcare palliative care costs, lecturer in palliative medicine, explains needs Luyirika, Emmanuel it for free,” be a more could way of managing cost-effective King’s College London director of the African Palliative Care executive One recent of an ageing the needs population. Association. literature review found care was that palliative frequently than alternative found to be cheaper forward can move countries developing Some the cost cases, of care and that, forms in most of the absence because rapidly relatively of 8 difference was statistically significant. Another Steedman, says Mark entrenched systems, PhD recent study found that the earlier care palliative programme manager for the End-of-Life Care was administered with an advanced to patients Forum at Imperial College of Institute London’s the greater diagnosis, cancer the potential Global Innovation. “We think there are Health care treatment cost savings. If palliative was a lot of potential,” there’s where places he says. within two days of diagnosis introduced this led “When from zero you can leapfrog starting you’re to savings of 24% compared with no intervention; a lot of the problems.” 9 within six days saved 14%. its introduction Richard Harding, who developed the African evidence of its economic a benefits, Yet, despite programme for Cicely Saunders International of healthcare goes into tiny proportion research (an NGO focused on research on and education 0.2% of the care (about on palliative research about at King’s College London, care) palliative for cancer awarded funds in the UK in research “African in Africa. at work sees this principle and just 1% of the US National 2010, for example, succeeded have high in delivering countries 10 Cancer Institute’s total 2010 appropriation ). care in the face of low palliative effective quality © The Economist Intelligence Unit Limited 2015 12

14 The 2015 Quality of Death Index Ranking palliative care across the world The question that lies ahead is how quickly he says. “And resources and overwhelming need,” member and effectively can put in place states high- be wise would countries and middle-income the recommendations that can meet measures to learn lessons from them.” to of the WHA resolution and increase access broadly, Sheila Payne, When looking more developing And while opioids and palliative care. emeritus professor at the International countries pioneer up promising to scale need Observatory on End of Life Care at Lancaster that already countries programmes, have being sees progress “There’s made. University, care provision palliative to sophisticated need we’re moving from the a general trend in which demands the growing find ways to meet of a pioneer seeing to people countries in many stage population. ageing rapidly palliative care in healthcare how they can embed However, some without even that, argue large she says. systems,” “That’s really important investments, can be significant improvements about sustainability.” because that’s in palliative that make made “The things care. step forward, the World Health In a major death are so simple,” says Ros Taylor, a better the forum Assembly—WHA, through which the care at Hospice director national UK. for hospice Health World is governed—last Organization “It’s basic pain control good about knowledge a resolution year published on palliative care about the things with people and conversations calling on member states to integrate it into that matter—that more many transform could national healthcare systems (see the box in Part deaths.” sets the policy 5). “That context and legitimises For policymakers, to consider issues major engaged,” governments says Dr Payne. getting are availability of care, human resources and a big development.” context, that’s “In the policy of care training, affordability of care, quality plan for the In addition, in its global action engagement and community public through of non-communicable and control prevention campaigns awareness volunteers. and support has included for 2013–2020, diseases the WHO issues by the five categories are covered These areas palliative care among the policy proposed In each, in the 2015 of Death Quality the Index. The WHO is also shifting to member states. Index up against measure at how countries looks more on non- its focus to place attention their regional other nations, as well as against diseases. communicable levels. income peers and those with similar © The Economist Intelligence Unit Limited 2015 13

15 The 2015 Quality of Death Index Ranking palliative care across the world The 2015 Quality of Death Index— 1 overall scores for example—have countries, African, in some of the 2015 In assessing the results Quality for innovation catalysts and investment. been of Death to find that it is no surprise Index, dominate wealthy the top of the list, countries As was the case in 2010, the UK tops the Index, while their poorer counterparts are clustered followed (which and New Zealand by Australia income In fact, sections. in its lower together and third took second The UK’s leading in 2010). indicator are a strong levels of the availability position reflects the attention paid to palliative are of palliative there However, and quality care. care in both public and non-profit sectors. often where exceptions to this rule, in places With a strong hospice movement—much of it the cause or where an individual is championing supported by charitable funding—palliative certain spread of HIV-Aids circumstances—the Figure 1.1 20 15 Quality of Death Index—Overall scores 00 01 02 04 06 08 © The Economist Intelligence Unit Limited 2015 14

16 The 2015 Quality of Death Index Ranking palliative care across the world and end-of life care are both part of a national Figure 1.2 that is leading strategy to more services being Quality of Death Index—Overall scores 20 15 provided in National Health hospitals, Service Countr y Rank as the country works care to integrate hospice 93.9 1 UK 91.6 2 stralia Au 11 system. deeply more into the healthcare 87.6 3 d New Zealan 85.8 4 Irelan d up to the fact that we may woken have “People 84.5 5 Belgium 83.1 6 Taiw an overall be able to save money by for society 82.0 7 Ger many 80.9 8 Ne th erlands investing better,” says Dr Sleeman. in dying 80.8 9 US 79.4 10 France 77.8 Canada 11 are in the top While Australia and New Zealand 77.6 e 12 Singapor 77.4 13 ay rw No countries make three, four other Asia-Pacific 76.3 14 Japan 76.1 15 d Switzerlan it into the top 20, with Taiwan at position six, 75.4 Sweden 16 74.8 17 stria Au Singapore at position 12, Japan at position 73.7 18 h Kore Sout a 73.5 Denmar k 19 14 and South at position Korea 18. For these 73.3 20 Finland 71.1 21 Italy government engagement countries, has been 66.6 Hong Kong 22 63.4 Spain 23 crucial. Among other benefits Taiwan factors, 60.8 Por tugal 24 59.8 Isr ael 25 from the country’s Health National Insurance, 58.7 Poland 26 58.6 Chile 27 insurance and the coverage determines which 57.7 Mongolia 28 12 services. for specific of reimbursement level 57.3 Cos 29 ta Rica 54.0 30 Lit huania (which performed relatively poorly Japan 53.6 31 Pa nama 52.5 32 Argentina at position Index, in the 2010 23 of 40) is 51.8 public Re Czech 33 48.5 ca 34 Sout h Afri programme, control a new cancer instituting 47.8 35 Uganda 46.8 Cuba 36 is expected which focus an increased to prompt 46.7 Jordan 37 46.5 ia ys Mala 38 of the on palliative care from the early stages 46.1 ugua y 39 Ur 44.0 40 Ecuador disease of palliative with the incorporation along 42.7 41 Hungar y 13 42.5 azil 42 Br care centres into the national budget. 42.3 43 Me xico 40.2 Thailand 44 40.1 Ve nezuela 45 And in Singapore, is grappling which with a 40.0 Puer to Rico 46 38.2 47 rkey Tu for people rapidly caring population, ageing 37.2 48 a Russi 36.0 49 Pe ru towards the end of their lives has risen up the 34.8 zakhst 50 an Ka 34.3 51 Ghana agenda for healthcare policymakers. Singapore 33.8 Morocco 52 33.6 Indonesia 53 recently developed a national palliative care 33.4 54 Tanzania 33.2 akia Slov 55 of Health strategy and the Ministry is working 32.9 Egyp t =56 32.9 =56 Greec e to increase the number both of services 31.9 58 Vietnam 31.3 available and to empower to make individuals 59 Zimbabwe 30.8 60 Saudi Ar abia 14 their care. own decisions on end-of-life 30.3 61 Zambia 30.1 62 ia Bulgar 30.0 ny Ke 63 a 28.3 Ro mania 64 However, while the European, Asia-Pacific 27.1 i Lanka 65 Sr 27.0 66 Malawi in the top of and North countries American 26.8 67 India 26.7 68 Colombia the Index relatively from benefit high levels 25.5 69 aine Ukr 25.1 less wealthy support, of government several Ethiopia 70 23.3 71 China with less well developed countries healthcare 22.8 Botswa 72 na 21.2 73 Iran systems stand out. These include Chile, 20.9 74 Guatemal a 17.2 75 public Dominican Re Costa Mongolia, Rica and Lithuania, which 17.1 76 My anmar 16.9 77 Niger ia appear 27, 28, 29 and in the top 30, at positions 15.3 78 s Philippine 14.1 Bangladesh 79 30 respectively. 12.5 80 Iraq © The Economist Intelligence Unit Limited 2015 15

17 The 2015 Quality of Death Index Ranking palliative care across the world Figure 1.3 case. The driving Mongolia is an impressive care in in palliative the increase behind force Quality of Death Index—Ranking by region 20 15 a doctor Davaasuren, is Odontuya the country Countr y 80.8 US palliative who is helping a national to build care 77.8 Canada 58.6 Chile pushing programme, prescription to change 57.3 ta Rica Cos 53.6 to make regulations available, opioids generic nama Pa 52.5 Argentina training care specialists, and working palliative 46.8 Cuba 46.1 ugua Ur y icas care in the on palliative education to include 44.0 Ecuador 42.5 azil Br Amer for doctors, workers. and social nurses curricula 42.3 xico Me 40.1 nezuela Ve “She’s a brilliant leader and visionary,” teacher, 40.0 to Rico Puer 36.0 ru Pe is leadership “And Dr Connor. says the WHPCA’s 26.7 Colombia 20.9 a Guatemal to any change critical process in anywhere in the 17.2 Dominican Re public 91.6 stralia Au world.” 87.6 d New Zealan 83.1 Taiw an 77.6 Singapor e By contrast, that might countries some be 76.3 Japan 73.7 h Kore a Sout to perform given strongly, expected more 66.6 Hong Kong c 57.7 Mongolia cifi their rapid recent economic growth, rank at 46.5 Mala ia ys 40.2 Thailand low positions India and China in the Index. 33.6 Indonesia Asia-Pa 31.9 Vietnam 67 and 71 poorly overall, at positions perform 27.1 Sr i Lanka 26.8 India of the size of their In the light in the Index. 23.3 China 17.1 anmar My this is worrying. populations, 15.3 Philippine s 14.1 Bangladesh 93.9 UK demographic case, a rapidly ageing In China’s 85.8 Irelan d 84.5 Belgium additional presents challenges. The adoption 82.0 Ger many 80.9 th erlands Ne with care in China of palliative has been slow, 79.4 France 77.4 No rw ay a curative healthcare dominating approach 76.1 Switzerlan d 75.4 Sweden as to change, strategies. This may be about 74.8 stria Au 73.5 Denmar k recent shifts in policy, mainly at the municipal 73.3 Finland government greater indicate level, support 71.1 Italy 63.4 Spain in hospice and investment and palliative care 60.8 tugal Por Europe 58.7 Poland services. 54.0 Lit huania 51.8 Re public Czech 42.7 y Hungar 38.2 Tu rkey Regional variations are present in the Index, 37.2 a Russi 34.8 zakhst an Ka and there are surprises here, too. In the 33.2 Slov akia 32.9 top the list, as the US and Canada Americas, Greec e 30.1 ia Bulgar might be expected. But Chile is in third place, 28.3 Ro mania 25.5 Ukr aine America—with making in Latin it a leader the 59.8 ael Isr 48.5 ca Sout h Afri in the care services of palliative highest number 47.8 Uganda 46.7 Jordan 15 region. Chile’s position in the Index reflects 34.3 Ghana 33.8 Morocco ca care made the efforts palliative to incorporate 33.4 Tanzania 32.9 t Egyp services policies and to develop into healthcare 31.3 t & Afri Zimbabwe 30.8 Saudi Ar abia for access to opioids launched the country since 30.3 Zambia 16, 17 30.0 ny Ke a its palliative care programme in 1996. 27.0 Malawi Middle Eas 25.1 Ethiopia 22.8 na Botswa 21.2 Iran 16.9 ia Niger 12.5 Iraq © The Economist Intelligence Unit Limited 2015 16

18 The 2015 Quality of Death Index Ranking palliative care across the world Figure 1.4 -capita GD P Cor relation with per (20 13 , US$, ppp) ) Quality of Deat h over all score (1 00=best 2 R = 0.652 10 0 UK Taiw an stralia Au many Ger d New Zealan Belgium Irelan d US France 80 Japan erlands th Ne ay rw No e Singapor Canada Switzerland Sweden a h Kore Sout Sout h Afr ica Italy Finland Au stria Denmar k Hong Kong Mongolia Spain Cuba Por tugal ta Rica Cos 60 ael Isr Chile Poland Jordan Lit huania Pa nama Czech R epublic Uganda Argentina Indonesia y ugua Ur Mala ia ys Morocco Br azil Vietnam Ecuador Me xico Hungar y Zambia Thailand Ve nezuela to Rico Puer 40 Ghana Russi a ru Pe Tanzania Tu rkey zakhst Ka an Slo va kia Egyp t Zimbabwe Bulgar ia abia Saudi Ar Sr i Lank a mania Ro India e Greec Ke a ny Malawi Colombia Botsw ana Ethiopia aine Ukr Iran China Guatemala 20 ia Niger epublic Dominican R Philippines Iraq anmar My Bangladesh 0 000 30 000 20 0000 000 90 000 80 000 70 000 60 000 50 000 40 01 Income per capit a (US$, PPP , 20 13 ) some However, countries do not countries. strongly with Income correlate quite levels perform as well as one might expect, given their success in delivering palliative care relative for example, wealth. This is the case for Singapore, 1.4 demonstrates). The top services (as Figure it into the top 10, and Hong which does not make are all high-income 10 countries in the Index Kong, 22 in the Index. is only at position which although within the high income countries, economic experiencing countries some group, In the case of Singapore, is the government 56th place) (equal as Greece difficulties—such to catch when working years it up following (48th)—can be found among the and Russia invested relatively little in palliative care. nations (Figure performing poorer 1.5). has one of the fastest ageing “Singapore populations in the world but until about 25 years Within Israel applies. principle a similar regions ago, we had a young population,” says Cynthia and South Africa (a country) (a high income chair Goh, Palliative Hospice of the Asia Pacific country) middle-income earn the first and second good Care Network. “So we built up a pretty and Eastern the 18 Middle scores highest among it comes but when care system, acute to chronic African countries. Meanwhile, four of the last diseases is a lot of catching and end of life, there in the Index—Myanmar, Nigeria, five countries up to do.” low-income and Bangladesh—are the Philippines © The Economist Intelligence Unit Limited 2015 17

19 The 2015 Quality of Death Index Ranking palliative care across the world Figure 1.5 income between that emerge The discrepancies 15 Quality of Death Index—Ranking by income grou p 20 of and Index performance and the presence y Countr as Mongolia are in themselves outliers such 93.9 UK 91.6 stralia Au that enlightening. to demonstrate serve They 87.6 New Zealan d 85.8 d Irelan there for countries answers are no simple 84.5 Belgium 83.1 Taiw an it comes to providing when the care that is so 82.0 many Ger 80.9 Ne erlands th and dying essential for their ageing citizens. 80.8 US 79.4 France 77.8 Canada social, A complex range of factors—economic, 77.6 e Singapor 77.4 rw No ay cultural to be taken and political—need into 76.3 Japan 76.1 d Switzerlan before care can be delivered palliative account 75.4 Sweden 74.8 stria Au from By factoring effectively. in everything 73.7 Sout h Kore a 73.5 Denmar k care palliative for specialist certifications 73.3 Finland High income 71.1 Italy workers to the availability of opioid analgesics, 66.6 Hong Kong 63.4 Spain the following that together five categories 60.8 tugal Por 59.8 ael Isr into why insights provide the Index constitute 58.7 Poland 58.6 Chile countries others are succeeding while some are 54.0 huania Lit 51.8 failing. public Re Czech 46.1 Ur ugua y 40.0 Puer to Rico 37.2 a Russi 33.2 Slov akia 32.9 Greec e 30.8 Saudi Ar abia 57.3 Cos ta Rica 53.6 Pa nama 52.5 Argentina 48.5 Sout h Afri ca 46.8 Cuba 46.7 Jordan 46.5 ia ys Mala 44.0 Ecuador 42.7 Hungar y 42.5 Br azil 42.3 xico Me 40.2 Thailand 40.1 Ve nezuela 38.2 Tu rkey 36.0 Pe ru Middle income 34.8 Ka an zakhst 30.1 Bulgar ia 28.3 Ro mania 26.7 Colombia 23.3 China 22.8 Botswa na 21.2 Iran 17.2 Dominican Re public 12.5 Iraq 57.7 Mongolia 47.8 Uganda 34.3 Ghana 33.8 Morocco 33.6 Indonesia 33.4 Tanzania 32.9 t Egyp 31.9 Vietnam 31.3 Zimbabwe 30.3 Zambia 30.0 Ke a ny 27.1 i Lanka Sr 27.0 Malawi Low income 26.8 India 25.5 aine Ukr 25.1 Ethiopia 20.9 a Guatemal 17.1 My anmar 16.9 Niger ia 15.3 Philippine s 14.1 Bangladesh 125; middle income countr 13 ies are t of less th an US$4, at had 20 ies more th Note: Low income countr hose th an GNI per capita an US$1 th ies more 46; and high income countr 2,7 an US$1 2,7 125 but less th US$4, 46. © The Economist Intelligence Unit Limited 2015 18

20 The 2015 Quality of Death Index Ranking palliative care across the world Case study: Mongolia—A personal mission the public, among professionals and health awareness core/100 Rank/80S in palliative policymakers, to develop specialised training Quality of Death overall score (supply) 28 57.7 care, and to increase drugs. to painkilling access Palliative and healthcare environmen t2 51.3 4 Dr Davaasuren admits that the work However, has not always 21 61.1 Human resources particularly she started easy, the public been neither as when Affordability of care =36 65.0 of ministry officials were aware of the existence or health =32 60.0 Quality of care “No one talked care services. palliative it,” she says. about 42.5 =27 Community engagement “And policymakers are very conservative, so it was very difficult to change the laws and regulations.” Mongolia to be done remains work While much to accommodate Averag e everyone of care, as a result of Dr Davaasuren’s in need efforts t Highes Palliative an d today the situation the Ulaanbaatar, improved. is vastly healthcare environment capital, care services (with the largest now has ten palliative 0 10 Cancer Outside the National facility at the country’s Center). 80 in need city, provincial hospitals now accommodate patients 60 of palliative care. 40 Co mmu nity Huma n engagement resource s 20 care is also now included Palliative and health in Mongolia’s 0 and its national control cancer legislation welfare social program. Since 2005, all medical schools and social workers affordable receive palliative care training. And, since 2006, 19 In 2013, Dr Davaasuren says, has been morphine available. the country non-cancer palliative care provisions, started Affordability of care Quality of care outpatient consultation and nursing, home care, and spiritual When (MPCS) Palliative the Mongolian in 2000 Care Society services. and social was established, it marked the start of efforts to fill a gaping it in the Index, All this is reflected makes Mongolia in which care services. hole in palliative had the country then, Until (at position 28) as well ranking into the top 30 in the overall it used no hospices programmes, care teaching or palliative (palliative of the Index’s as in three and healthcare categories just 1kg of morphine policy on each year, and no government and community resources human environment, engagement). 18 care existed. palliative bracket— in the “low income” its peers first among It ranks care,” for palliative “We did not even have the terminology around ten points ahead of the second-ranked country in the driving force behind the explains Odontuya Davaasuren, this group, Index scores against per-capita Uganda. Plotting of palliative care services in Mongolia. creation by income (see Figure 1.4) reveals that Mongolia overachieves its resources. some margin given a conference attending after It was in 2000, in Stockholm that Dr Care, of the European Association for Palliative is to expand the says, Dr Davaasuren The next challenge, to take action. to Mongolia, On returning decided Davaasuren care services provision and paediatric palliative of non-cancer students with her postgraduate visits she made to patients care and services while also increasing the availability of home the conversations “I saw so much with families. and recorded for those living in the provinces. but also psychological just physical in families—not suffering For Dr Davaasuren, the ability for those in pain and with she says. and economic,” incurable diseases to receive palliative care is not just a case of Society and the Open from the Ford Foundation Funding a expanding services to meet need—it is about meeting rising Dr Davaasuren helped Foundations in her efforts to build right. human basic © The Economist Intelligence Unit Limited 2015 19

21 The 2015 Quality of Death Index Ranking palliative care across the world Case study: China—Growing awareness to palliative Shanghai care. to add 1,000 beds for planned core/100 Rank/80S some in hospitals and by the end of 2014, patients hospice Quality of Death overall score (supply) 71 23.3 22 and Tianjin care centres, health some in community-based Palliative and healthcare environmen 21.1 9 t6 hospice care to the official list of government- added recently 21.0 70 Human resources 23 services. funded social Affordability of care =65 37.5 Shi Baoxin, director of the Hospice Care Research Center Quality of care 69 16.3 improved says that despite Medical at Tianjin University, 25.0 Community engagement =45 awareness and expansion of palliative care in China over the days. it’s still early past 20 years, care to “It’s hard for hospice China develop because of the lack of education about death,” mainly e Averag that this also makes psychological adding effective Dr Shi says, t Highes of dying patients more treatment challenging. d Palliative an healthcare environment This lack of awareness extends to medical professionals. Ning 10 0 at Peking Union Medical College Xiaohong, an oncologist 80 Hospital, says that teaching of palliative care concepts in 60 which limited, is extremely training that most medical means 40 mmu Co nity Huma n to essential exposed been have never professionals practicing engagement s resource 20 Dr Ning is developing concepts or techniques. In response, an 0 care to be used on an annual on palliative online course basis. Care Wenwu, director of the Department of Palliative Cheng Cancer that the lack of agrees at Fudan University Hospital, Affordability of care and low public awareness mean that professional knowledge Quality of care and treatments, on curative focus and doctors both patients care approach in China has been of a palliative The adoption care palliative about think don’t with most on curative focused resources slow, healthcare However, awareness public options. officially of Health Ministry the national Although treatment. increasing, is gradually spread via The biggest care departments endorsed the establishment of palliative of and also word TV and newspapers 20 is to challenge of and access awareness public in 2008, in hospitals mouth. Dr Ning reports an increase 400 of China’s Outside care is still limited. to palliative and says she in the last few years, change people’s cancer specialised of hospitals, there are only a handful at her clinic now sees some patients minds, to let them and community centres that offer hospitals charity health coming in with questions about know that society care services palliative to patients. care options. palliative care can take good overall this reflects China’s rank of 71st out of 80 countries government Without subsidies, in parents of their of palliative care in limited availability and the poor quality financial costs are a major challenge, of the late stages at less than 1% with most general. accessibility stands Service not care is generally as palliative Beijing concentrated of Shanghai, hospices areas in the urban supported the national through illness and help or guidelines; strategy is no national there and Chengdu; Songtang system. health security die with them is limited; of opioids use and availability and patient-doctor in Beijing was one of the Hospice dignity. 21 In addition, if care is not covered by is poor. communication palliative care institutions, earliest donations the financial burden on patients can be charitable and currently in 1987, founded cares treatments As with most quite medical high. public in China, for around 320 patients. the While Li Wei, founder, Songtang the cost and patient do not fully cover contributions subsidies costs low, on of care are relatively Hospice, Beijing are required. average RMB1,000-2,000 (US$160- still patients 320) per month, shift in government policy, mainly at the municipal A recent struggle it, says Li Wei, the hospital’s founder. to afford level, signals a trend of greater support and investment in hospice and Cities like Shanghai, Shenzhen care services. also hinder In addition to financial barriers, cultural beliefs Tianjin access and policies to increase have set new targets the widespread According to Dr Li, most care. use of palliative © The Economist Intelligence Unit Limited 2015 20

22 The 2015 Quality of Death Index Ranking palliative care across the world children Chinese still follow the tradition of “raising to care for main culture traditional Chinese is to apply improvement you in old age,” and many families feel that to outsource care to psychological counseling, to we do research for example of relatives, even in their is unfilial. final days, understand how people of different classes and ages think psychologically.” to figure of death, out how to help them people’s is to change biggest challenge minds, to let “The care of their that society know them parents can take good Hospice Songtang Meanwhile, has worked with many die with dignity,” and help them of illness in the late stages and emotional psychological who provide volunteers leaving often policy, of the one-child The impact Dr Li says. to patients, community educating in the process support and four grandparents, for two parents caring individuals is also palliative about awareness members Public care. to for outside demand more will lead to even resources efforts, media social scattered through as growing such support. provide an online campaign and Dignity” founded by on ”Choice members, the children Communist of senior which Party care in palliative of providing aspects innovative The most 24 encourages visitors to sign living wills. to Dr Shi, According but cultural. are not technical, China the Western ideas for hospice treatment, but our “We follow © The Economist Intelligence Unit Limited 2015 21

23 The 2015 Quality of Death Index Ranking palliative care across the world Palliative and healthcare 2 environment evaluation to deliver and its capacity policy towards of demand Given heading the avalanche care services. palliative governments around an important the world, in delivering success of countries’ indicator National policies play a vital role in extending care is the extent palliative to which services are the to palliative care. As a result, access available—whether care in hospices, hospitals, and effectiveness presence of government this, homes To assess own homes. or people’s policies receives a 50% weighting in this including of indicators, the Index uses a range (and this category is given category because overall on healthcare, the a nation’s spending in the overall a 20% weighting this Index, and strength presence of government policies of indicator Quality 10% of the entire represents of research- care, on palliative the availability score). Death to and the capacity evaluation policy based 25 palliative care services. deliver While changes in methodology and scope mean direct Index comparisons with the 2010 In this category, the UK tops the in which made countries have are not possible, several list, six of the top 10 countries are European, policy advances that are reflected in a higher Taiwan, along with Australia, the US and New in the 2015 Index. was at Singapore ranking some emerge. surprises Regionally, Zealand. down the position 18 in 2010—roughly midway that it is notable countries, Asia-Pacific Among 12 out is now at position list—and 40-country Vietnam and Mongolia it into the top 10. make of 80 countries, having developed a national And in the Americas, while as expected the US care strategy palliative that was accepted in place. is in fourth and Canada top the list, Chile 2012 and is now being implemented. of the This, says Eduardo Yanneo, chairman Montevideo-based Latin American Association India, was at the bottom which of the list in the is “because Care, for Palliative it has one of the position in higher is at a slightly Index, 2010 in the region, with oldest programmes national indication a stronger 51—reflecting 2015—at government support since the beginning.” of government While the budget commitment. Program for allocation for India’s 2012 National Not all high-income countries perform well in of the elements Care was withdrawn, Palliative the Index. low in the is relatively Kong Hong in place strategy and, as a result, some remains of this category, at position overall 28— ranking teaching the across are emerging programmes 25), a middle- (at position Panama than lower Moreover, country. recent legislative changes (at position income country, and Mongolia it easier for doctors to prescribe have made scores 24), a low-income country. Hong Kong morphine in India. relatively poorly in terms of overall healthcare of research-based the availability spending, © The Economist Intelligence Unit Limited 2015 22

24 The 2015 Quality of Death Index Ranking palliative care across the world Figure 2.1 Japan—which it into Meanwhile, only just made at 14 in the Index—is the top half of the 2010 Palliative and healthcare environment categor y (20% we ighting) 80-country 2015 listing. Various initiatives have Rank Countr y 85.2 1 UK in Japan, strengthened care services palliative 84.8 2 Ne th erlands 84.1 3 Au stralia Plan to Promote Basic as the 2012 such Cancer 81.7 4 Irelan d 79.6 5 Taiw an Programs, includes provision of Control which 78.9 6 US 77.8 care to cover pain holistic patients’ and families’ 7 Au stria 76.7 8 d New Zealan diagnosis from and distress onward, and the 71.0 9 No rw ay 69.4 10 Belgium launch that year of a Care for Life-threatening 67.6 Ger 11 many 66.4 e Singapor 12 programme Illnesses of palliative care education 64.8 d 13 Switzerlan 62.2 14 Japan for paediatricians. 61.2 15 Spain 60.9 France 16 58.4 17 Finland 57.5 to cite some (not In addition, other examples Canada 18 56.7 19 Italy included all of which were in the 2010 Index), 55.5 a 20 h Kore Sout 53.5 21 Isr ael Italy, Ecuador, Denmark, Finland, Colombia, 52.1 ta Rica Cos 22 51.9 23 Chile Sri Lanka, Panama, Portugal, Russia, Spain, 51.3 24 Mongolia 51.2 25 Pa nama Sweden and Uruguay all established have 50.5 =26 Denmar k 50.5 Sweden =26 guidelines, laws new or significantly updated 50.4 28 Hong Kong 44.8 ugua 29 y Ur or national years, in recent programmes and 44.6 Puer to Rico 30 42.2 Poland 31 Costa Rica, as Brazil, such countries Tanzania 41.7 32 Sout h Afri ca 41.4 tugal Por 33 are in the process and Thailand of developing 39.7 34 Cuba 39.3 35 Jordan frameworks. their own national 38.0 Br azil =36 38.0 =36 Malawi 37.8 38 Zambia For the most part, the countries scoring highly 37.7 nezuela Ve 39 37.4 40 Russi a that have are also those Index in the overall 37.3 41 Ecuador 37.1 42 ia Mala ys the most palliative national effective care 37.0 Me xico =43 37.0 Uganda =43 care palliative Mongolia—where strategies. 34.9 45 Vietnam 34.7 rkey Tu 46 is included in the country’s health and social 33.6 a ny 47 Ke 33.4 cancer and its national legislation welfare 48 Ghana 33.2 49 ru Pe 26 control programme may —does far better than 33.1 Tanzania 50 32.1 51 India be expected due in part to its strength in this 32.0 Thailand 52 31.0 i Lanka 53 Sr indicator. 30.9 54 Indonesia 30.1 Lit huania 55 28.1 56 Zimbabwe 27.6 Hungar 57 y of national of the importance examples Other 26.7 e 58 Greec 25.8 59 Argentina in improving palliative care provision planning 24.5 60 public Re Czech In Colombia, are commonplace. a law signed 23.7 Ukr 61 aine 22.7 Colombia 62 gives into effect with terminal, patients in 2014 22.5 Iran =63 22.5 Slov akia =63 chronic, and irreversible degenerative 22.2 65 Morocco 21.8 ia 66 Niger the right care services conditions to palliative 21.5 Botswa na 67 21.2 Saudi Ar abia 68 “through an integrated treatment of pain and 21.1 China 69 19.9 70 an zakhst Ka physical, other emotional, social and spiritual 19.0 71 Bangladesh 16.8 72 Ethiopia Under the law, the health symptoms”. system 14.5 My 73 anmar 12.6 Bulgar ia 74 are obliged to offer and the government 10.3 Guatemal 75 a 9.6 Ro mania 76 palliative the country, care services throughout 8.5 s Philippine 77 6.1 health to educate and to ensure professionals 78 Dominican Re public 5.5 Egyp t 79 27 at any time. are available opioids “It’s early 4.1 Iraq 80 © The Economist Intelligence Unit Limited 2015 23

25 The 2015 Quality of Death Index Ranking palliative care across the world Figure 2.2: Presence and effectiveness of government-led national palliative care strategy 5 4 3 2 1 is no government- There is a government- There is a government- There There is a well-defined, is a comprehensive There for the led strategy led strategy for the for the led strategy strategy government-led for the strategy development and promotion development and promotion and promotion development and for the development and promotion development care. palliative of national palliative of national care. care. palliative of national of national promotion palliative care. of national However, a it is merely This has a broad and vision, palliative care. It has a clearly It has a clear vision, statement of broad intent. loosely milestones defined and specific vision clear an action defined targets, It does not contain a clear targets). There (no specific are There milestones. mechanisms plan and strong or specific milestones vision are limited in mechanisms in place mechanisms targets. in place to achieve There to achieve. are no place that aim to achieve and guidelines on In federal-structure clear in place mechanisms to milestones. In federal- It is mostly implementation. are countries, there achieve the strategy. states structure countries, well implemented, even in strong and clearly defined to follow are not mandated federal-structure countries. strategies that individual the national i.e. it strategy; states must These follow. in nature is only prescriptive mechanisms and milestones reviewed and are regularly updated. Portugal Singapore Austria Japan Brazil Australia Argentina Iran Bulgaria Guatemala Belgium Ireland Taiwan Puerto Mongolia Canada Rico Bangladesh Kazakhstan Dominican Iraq Netherlands UK Costa Rica Russia Botswana Lithuania Republic Philippines Chile Norway Panama New Zealand Africa China Morocco Egypt Romania Cuba South Finland Denmark Sri Lanka Colombia Myanmar Korea France South Ecuador Sweden Czech Nigeria Germany Spain Switzerland Hong Tanzania Republic Saudi Arabia Kong Ghana India Thailand Ethiopia Slovakia Israel US Turkey Greece Ukraine Italy Indonesia Uganda Hungary Jordan Uruguay Kenya Malawi Venezuela Vietnam Malaysia Mexico Zambia Peru Zimbabwe Poland comparable data are not care spending, for which “But there says Dr Payne. days,” are things always given a 20% weighting, so available—is promise.” happening there great that show 2.3.) Figure Index; 4% of the overall represents launch it was the 2007 of a national In Spain, For example, the US is at top of the list while strategy that led to an increase of 50% in the when to healthcare spending (equivalent it comes and unified number of palliative care teams 6 it is only at position of GDP in 2012), to 17.9% regional to palliative according care, approaches the UK in this category of the Index. And while to Javier Rocafort Gil, former president of the it falls to position tops the list in this category, 28 Spanish Care. for Palliative Association spending of alone 17 looking at healthcare (9.4% GDP). healthcare between The relationship spending complex. care is more and availability of palliative is an even Singapore more dramatic on spending government (In this category, since Fund—a Provident its Central outlier, for palliative healthcare—which is used as a proxy based on comprehensive social security system © The Economist Intelligence Unit Limited 2015 24

26 The 2015 Quality of Death Index Ranking palliative care across the world a savings plan that is compulsory of has a high level The US, for example, for all working a large the care through of national proportion residents—covers spending on palliative healthcare with individuals paying for costs, for hospice reimbursement government-funded healthcare However, fund. out of their in recent care through Medicare, the federal programme years, falling birth rates and smaller providing health insurance coverage to all family have meant that, when it comes to caring over the age of 65. individuals units for the elderly system the traditional and dying, In the UK, the hospice which movement, of care by relatives has broken down. As a care, delivers much of the country’s palliative Singapore result, its healthcare has had to raise donations. charitable through largely is funded The government has increased spending. In Singapore, too, the charitable sector was the while for the elderly coverage healthcare behind the hospice movement. “A group of national healthcare insurance programme a gap in the services, and identified volunteers improving has been dramatically enhanced, at the time wasn’t it was a gap the government affordability. prepared to work on,” explains Dr Goh. However, reflect differences The discrepancies in the way she says, while the voluntary sector continues palliative For care is delivered around the world. now funds the government to run the services, in some are responsible governments while places, providing them, 30-60% of their approximately from philanthropic of organisations, a variety requirements. financial the reach extend institutions, to religious groups countries. of those services in many Figure 2.3 relation with spending on healthcare Cor (% of GDP, 12 ) 20 h over 00=best all score (1 Quality of Deat ) 2 R = 0.463 10 0 UK Au stralia d New Zealan Belgium d Irelan an Taiw many Ger France US Ne erlands th 80 Canada Japan No rw ay Singapor e Switzerland stria Au a h Kore Sout Sweden Finland k Denmar Italy Hong Kong Spain Isr ael tugal Por Poland 60 Mongolia Chile Cos ta Rica Lit huania Czech R epublic Argentina nama Pa h Afr Sout ica Me xico Ecuador ia Mala ys Uganda Jordan Cuba y ugua Ur nezuela Ve Hungar y azil Br to Rico Puer Thailand 40 Morocco Tu rkey Russi a an Ka zakhst Pe ru Tanzania Ghana Indonesia va kia Slo Greec e Egyp t Saudi Ar abia Ke ny a ia Bulgar Zimbabwe mania Ro Malawi a Sr i Lank India aine Ukr China Ethiopia Iran ana Botsw Colombia 20 Vietnam Bangladesh Guatemala ia Niger My anmar Zambia Philippines Iraq Dominican R epublic 0 18 14 12 10 02468 20 16 ) 12 , 20 hcare spending (% of GDP Healt © The Economist Intelligence Unit Limited 2015 25

27 The 2015 Quality of Death Index Ranking palliative care across the world Figure 2.4 of hospices network of the large Similarly, Africa, most in South are non-governmental Capacity to deliver palliative care* (%) with churches organisations, also providing Rank Countr y 63.6 1 Au stria a highly services. South Africa has developed 52.0 2 US 46.6 3 UK care through integrated model of palliative 44.2 4 Au stralia 42.8 5 erlands th Ne movement, says Dr Harding. “Their its hospice 42.6 6 No rw ay 42.3 on end-of-life hospices care,” he just focus don’t 7 Cos ta Rica 40.8 8 Canada providing are out in the community “They says. 40.2 9 d Irelan 39.7 10 Ger many TB control, education, family diagnosis, 39.3 11 Belgium 39.0 12 an Taiw to infection control into clinics and going 32.5 13 d New Zealan 30.9 14 Sweden provide basic HIV care.” 25.5 15 Spain 24.3 16 huania Lit 24.0 17 Puer to Rico 23.0 that have in countries Yet even policies robust 18 d Switzerlan 22.9 19 Poland care, for palliative and funding gaps in provision 19.6 20 Singapor e 17.5 21 Denmar k with the rise in the that may increase exist—gaps 16.8 22 France 16.4 Mala ys 23 ia years. proportion in the coming citizens of older 15.4 Ur y 24 ugua 12.5 25 Italy 12.3 Hungar 26 y 11.0 Japan 27 in the overall second In Australia, which ranks 10.2 28 Finland 8.3 in the palliative and healthcare and third Index Isr 29 ael 7.0 30 Hong Kong for category, responsibility environment 6.2 Sout 31 h Afri ca 5.7 32 ia Bulgar can to the states, is devolved healthcare which 5.6 =33 Mongolia 5.6 a Sout =33 h Kore in care delivery. lead to inconsistency 4.5 35 Chile 4.4 mania Ro 36 4.3 Argentina 7 =3 4.3 =3 akia 7 Slov spread of funding isn’t an equitable “There 4.2 e 39 Greec 3.1 Re Czech 40 public chief the country,” says Liz Callaghan, across 2.9 tugal 41 Por (PCA). Care Australia of Palliative executive 2.8 Philippine 42 s 2.6 43 Jordan “You’d on what the be based it would hope 2.5 44 Ke ny a 2.0 =45 Uganda about population it, but talks Everyone needs. 2.0 Zimbabwe =45 1.8 =4 Botswa na 7 funding states In some very far away. that’s 1.8 Zambia =4 7 1.3 Russi a 49 care is extremely for palliative low so the 1.0 =50 Malawi 1.0 =50 Tanzania team multidisciplinary be just a doctor might 1.0 =50 Guatemal a 0.9 53 aine Ukr and a nurse.” 0.8 nama 54 Pa 0.7 zakhst Ka 55 an 0.6 Ecuador 56 government for funding But while increased 0.5 7 =5 Cuba 0.5 Tu =5 rkey 7 healthcare this seem to be the answer, might 0.5 Saudi Ar abia 7 =5 0.4 India =60 In the US, tighter be the case. may not always 0.4 Colombia =60 0.4 =60 Me xico scrutiny of healthcare spending by both indicator is a proxy *This the percentage to measure 0.4 =60 Thailand of people in one year that who died in a country 0.3 =6 4 China and private actually could insurers government 0.3 Ghana 4 =6 given care, palliative be able to receive have would 0.3 Pe ru 4 =6 increased use of palliative driving be a force resources. Some the country’s existing countries 0.3 Br azil 4 =6 of deaths that publish statistics on the number 0.3 =6 4 Iraq that palliative care care, as it becomes clear 0.2 69 Dominican Re public used palliative care, but data is not uniformly 0.1 Bangladesh =70 is a cost-effective to hospital alternative As in the Index. available for all 80 countries 0.1 =70 Iran admissions. 0.1 an approximation, of the we use an estimation Sr =70 i Lanka 0.1 =70 My anmar of palliative care services available (i.e. of capacity 0.1 =70 Indonesia care, of palliative providers specialised including 0.1 Ve nezuela =70 As part of this, and hospitals’ systems’ health 0.1 =70 Vietnam that admit and provide patients at those services 0.1 t Egyp =70 reimbursements are increasingly being tied to data, on WHPCA and in facilities) and home based 0.1 =70 Morocco by the number year. in a given of deaths divide 0 Niger =79 ia including measures, quality patients whether 0 =79 Ethiopia are readmitted In Pennsylvania, 30 days. within © The Economist Intelligence Unit Limited 2015 26

28 The 2015 Quality of Death Index Ranking palliative care across the world funded for example, federally Medicaid—the deaths older, are becoming “Everyone is getting healthcare programme for low-income the number per complicated, more of deaths year is increasing and hospices to healthcare not reimburse Americans—does only cater providers for all 30-day readmissions. 6% of all deaths,” says Dr Sleeman. “So about enough there’s no way we’ll ever have in- patient and they “If we take care of a Medicaid measuring patient beds.” the A proxy indicator You’d hope readmission the cost of the second back, come capacity based care, palliative to deliver on care [palliative is on us,” says David Casarett, director of the services to the number available compared be funding] would and palliative hospice care at the University of illustrates the scale 2.4), (Figure of deaths of the based on what Pennsylvania Health System. “So the attention countries, the challenge facing most with the population needs. to drive to 30-day readmissions is starting a lot just 64% and the still reaching (Austria) highest talks Everyone 29 of interest care.” in palliative majority but 28—under 10%. of countries—all it, but that’s about The preference of many people to die at home is very far away. and people’s that care homes argues Dr Sleeman another infrastructure needs to reason hospice homes should be the focus for the extension of of outpatient with the availability be balanced care services. palliative putting less “It means care. And as countries are faced with palliative on a unit catering to only 22 people emphasis Liz Callaghan, chief executive, and healthcare rapidly ageing populations skills and professionals into at a time but taking Palliative Care Australia more stretched, tightly become resources more “That’s she says. the community,” the future.” and more to take place care will need palliative settings. outside or hospital hospice formal © The Economist Intelligence Unit Limited 2015 27

29 The 2015 Quality of Death Index Ranking palliative care across the world Case study: Spain—The impact of a national strategy development in palliative Since 2007, another important Rank/80S core/100 has been the involvement care development of “la Caixa” Quality of Death overall score (supply) 23 63.4 the integration foundation, banking has supported which of Palliative and healthcare environmen t1 61.2 5 into the country’s care teams and spiritual 29 psychological 36 42.6 Human resources palliative care network. 75.0 =25 Affordability of care the launch strategy, Spain—which Even before of the national 78.8 Quality of care 24 Index and 15 in the palliative is at position 23 in the overall Community engagement =33 40.0 from the 1990s category—had environment and healthcare network a strong developed services. of homecare Spain “It’s cultural, because in Spain people want to die at home,” e Averag says Professor at the director Gil, who is now medical Rocafort Highes t Palliative an d Francisco Fundación at Madrid’s Laguna Universidad Vianorte healthcare environment care is very strong— “But it’s also because de Vitoria. primary 0 10 care in palliative in specialist development much of the initial 80 care teams.” was in primary Spain 60 has only two dedicated hospices, services And while Spain 40 mmu nity Co n Huma engagement very similar to those found at the are available at hospices resource s 20 country’s medium- stay hospitals. and long-term 0 despite However, in many its strength of palliative care, areas to having Spain still has work to do. “We are close the number of units we need,” in home care and hospital teams explains Affordability of care Quality of care Gil. “But we are still far from having Rocafort Professor enough for children.” units The developments care in Spain that followed the in palliative 30 than half of medical more Moreover, while at universities demonstrate 2007 launch palliative care strategy of a national care basic now undertake students palliative and intermediary can be achieved when standards are co-ordinated across what for specialist accreditation programmes, care teams palliative a nation. Rocafort Gil, will require This, says Professor is still lacking. in Catalonia, of excellence: The country has long had pockets and 2004 further regulation. And while laws passed in 2003 available since extensive palliative care services have been to receive give every Spanish citizen the right palliative care with more 1990 through than Care System, Health the Catalan regions—Andalusia, Aragon or in hospital, only three at home 31 by palliative care services by 2005. covered 95% of the region legislation the kind of detailed and Navarra—have covering of But in a country where healthcare falls under the authority should be implemented across care that he argues palliative 17 regional health systems, unifying approaches to palliative country. the whole care has done to services. access to increase much Spain’s strengths and weaknesses highlight the fact that, even “It was the determinant care of palliative for the development that have broad in countries access to high-quality services, of the Rocafort in Spain,” Gil, former president says Javier remains and training legislation of policy, the interplay critical “The strategy Spanish Association for Palliative Care. ensured if service for care. demand rising is to meet provision in that every regional ministry of health would work together the same manner.” © The Economist Intelligence Unit Limited 2015 28

30 The 2015 Quality of Death Index Ranking palliative care across the world Case study: South Africa—Raising the palliative care profile Hospice the among Care Association of South Palliative Africa core/100 Rank/80S religious also have hospitals institutions leaders. Meanwhile, Quality of Death overall score (supply) 34 48.5 that offer palliative care. 2 t3 Palliative and healthcare environmen 41.7 on hospices of functional number has the biggest “The country 59 27.5 Human resources says Dr Luyirika. “That the continent,” on a Africa puts South 57.5 =44 Affordability of care level.” different 63.8 31 Quality of care While in the Index performer is not the strongest Africa South 40.0 Community engagement =33 in the human resources category (it is at position 59), in many “It’s and skills it has forged in training ahead ways, provision. South Africa relatively “In fact, the first says Dr Luyirika. well developed,” Averag e degree master’s by the University care was offered in palliative Highes t Palliative an d in of Cape postgraduate Town.” The university’s diploma healthcare environment distance-learning medicine—a palliative programme—caters 0 10 such as doctors, healthcare to experienced professionals 80 32 and social nurses workers. 60 40 lies in its long strength, other The country’s adds, Dr Luyirika Co mmu nity n Huma engagement s resource 20 history for those care into training palliative of integrating 0 medicine in family departments. working The need has also prompted the with HIV-Aids to help those initiatives, supporting palliative development of non-profit The Thogomelo care. has established Project, for example, Affordability of care Quality of care 33 for caregivers. groups support African With better availability of medicines than many a prominent advocacy role has played Africa South Meanwhile, countries highest of hospices, number and the continent’s debates, with the health minister issuing a statement in global South Africa is at position 34 in the Index, the highest- Union in on palliative care at the 2013 African meeting ranking African country. In fact, patients from neighbouring Johannesburg. and Botswana countries such as Swaziland, Namibia receive “The department has been instrumental of health in causing Emmanuel Luyirika, executive care in South Africa, explains the World Health bodies other like the African Union, Care Association. Palliative of the African director to Organization Narcotics and the International Control Board Support from a derives Africa care in South for palliative Africa has palliative care,” says Dr Luyirika. “South recognise the to government In addition of sources. variety funding, care is given a been instrumental in ensuring that palliative movement— country has a strong non-governmental hospice profile higher at the global level.” services—with both outpatient offering the and in-patient © The Economist Intelligence Unit Limited 2015 29

31 The 2015 Quality of Death Index Ranking palliative care across the world Human resources 3 and palliative care, of palliative understanding The rising need care means for palliative care is compulsory in doctor and nurse training will need to spend more equipping countries schools and healthcare receive professionals to provide it. Part of this and nurses doctors throughout professional training careers. their providing appropriate training for means is no such scoring knowledge For those 1, there schools. in medical care workers end-of-life or training available. growing However, this training to meet demand, to be incorporated also needs into the teaching In this category, at the top of the list is care with palliative and nurses, for all doctors [health If every followed Australia, by the UK and Germany. expertise general of both component a required it into the top 10 in make and Taiwan Singapore professional] medical qualifications. and specialised but Asia’s this indicator, poorer, more populous has palliative nations do worse. India, for example, has a countries of the Index, In this category are care in their of specialised shortage care professionals and in of specialists assessed on the availability basic education, for palliative care is not yet the accreditation care and practitioners palliative with general then no one will is working the country However, norm. towards knowledge medical care; the of palliative out not come according to Sushma changing this, Bhatnagar, care; for palliative of certifications presence understanding pain head of anaesthesiology, pain and palliative for every and nurses and the number of doctors how management, of Medical care at the All India Institute 1,000 (to gauge deaths care-related palliative the to communicate Institute-Rotary Sciences’ Dr B R Ambedkar for palliative care). burden relative to the need with patients and Cancer Hospital. or that families Of these, the availability of specialised palliative teaching various highlights Dr Bhatnagar care workers weighting, the highest is given psychological, emerged that have India across programmes 8% of the overall (and at 40% of this category social and spiritual the government since introduced a national category is Index, as the human resources care are part of care policy palliative in 2012. This includes 20% of the overall 3.2). Index; weighted Figure palliative care, not by the launched initiative national a major Countries that score 5 in this indicator have extra. an optional “They Association are Care. Indian of Palliative specialist or nationally accredited professionally organising essential courses in palliative care in care teams. for their core palliative training “So all 30 centres,” almost says Dr Bhatnagar. By contrast, a score of 1 indicates an absence Sheila Payne, emeritus news it’s good for the country.” and a severe of certification or accreditation professor at the International shortage of palliative care professionals. Observatory on End of Life Care at Lancaster University well in Meanwhile, that perform in countries for improvement. see room some this category, knowledge medical General care of palliative While Australia is in first place, for example, is also important (accounting for 30% of this care doctor a retired palliative McMaster, Yvonne to countries with scores category), of 5 awarded where and doctors have a good all nurses © The Economist Intelligence Unit Limited 2015 30

32 The 2015 Quality of Death Index Ranking palliative care across the world Figure 3.1 identifies care, gaps and advocate for palliative infrastructure. resources in human eighting) Human resources categor y (20% w Rank Countr y is the case of New South Wales, She cites which 92.3 1 stralia Au 88.2 2 UK population. of Australia’s to one-third home “In 87.9 3 Ger many 86.1 4 Irelan d the Sydney outside the rural and regional areas 81.4 5 New Zealan d 78.0 6 Canada cluster, care is palliative most metropolitan 75.5 7 No rw ay 74.0 8 Singapor e by nurses,” done “There she says. are only four 72.2 9 an Taiw 71.6 0 =1 France outside specialist in New South doctors Wales 71.6 0 =1 Sweden 71.4 the Sydney though more area. And even are 12 stria Au 71.2 13 a h Kore Sout provided being isn’t being the funding trained 70.2 14 US 69.4 15 d Switzerlan for the positions.” 67.5 16 Japan 66.0 17 Belgium 62.6 18 Finland 62.4 k 19 Denmar Despite in this at 10th position France’s 62.1 Hong Kong 20 61.1 Mongolia 21 in training still exist. For category, gaps 59.6 erlands th 22 Ne 57.5 master’s degrees while example, in palliative Isr ael 23 54.0 24 Uganda they have once for doctors care are available 52.6 25 y ugua Ur 52.2 Czech 26 public Re attention is paid to it during little qualified, 51.5 Italy 27 51.3 Lit 28 huania are their initial training. there “For doctors, 50.7 Argentina 29 49.4 =30 Jordan to study only 10 hours in all of their training 49.4 =30 Poland 47.4 32 Chile de la Tour, palliative of head care,” says Anne 46.2 azil 33 Br 45.4 Me 34 xico of palliative care and chronic the department 43.2 35 Zambia 42.6 36 Spain Hospitalier V Dupouy. She pain at the Centre 42.3 tugal Por 37 42.1 Hungar 38 y in terms no recognition have that nurses adds 41.9 39 Cuba 41.7 40 ys ia Mala for having or status of salary in a specialisation 41.6 ta Rica =4 Cos 1 41.6 palliative care. Pa nama =4 1 39.8 Ukr =43 aine 39.8 =43 Ve nezuela 39.5 Thailand 45 performs Uruguay relatively well in this 37.1 Morocco 46 36.3 47 Ghana category, the top 25 countries coming within 36.1 t Egyp 48 35.4 49 Saudi Ar abia Yet Dr in the Americas. and in the top three 35.1 50 Malawi 34.4 51 Ecuador of the Latin Yanneo, American Association for 34.0 Slov akia 52 33.8 Palliative highlights Care, The weaknesses. 53 Colombia 31.3 mania Ro 54 main problem, he says, is that the government’s 31.0 a 55 Russi 30.0 Sr i Lanka 56 has not led to the focus resources human initial 28.8 57 Tu rkey 27.9 58 ia Niger care discipline. palliative development of a robust 27.5 59 ca h Afri Sout 27.0 zakhst Ka an 60 “Unfortunately, did not have efforts these 25.9 e Greec 61 25.8 Zimbabw 62 e support and adequate timely sufficient, from 25.1 63 Tanzania 24.4 public Dominican Re 64 authorities,” he says. and government university 23.0 65 Puert o Rico 22.5 Pe 66 ru 22.3 India 67 education to “improving In fact, he points 22.1 68 Guatemal a 21.3 69 Vietnam as one of in the discipline” and certification 21.0 70 China 19.7 Indonesia 71 Latin by most faced challenges the biggest 19.6 Botswa na 72 18.8 Ke 73 a ny countries. American 17.9 Ethiopia 74 12.8 75 Philippine s 11.6 ia 6 =7 Bulgar says Cecilia for Chile, This should be a priority 11.6 =7 6 My anmar 11.5 Iran 78 head of the National Cancer Sepulveda, former 4.0 Iraq 79 1.3 80 Bangladesh of ministry at Chile’s Programme Control © The Economist Intelligence Unit Limited 2015 31

33 The 2015 Quality of Death Index Ranking palliative care across the world Figure 3.2: Availability of specialised palliative care workers 5 3 1 2 4 is a severe shortage There is a shortage There of are specialised There number is an adequate There There are sufficient of specialised palliative specialised palliative care professionals palliative palliative of specialised specialised palliative and care professionals and care professionals, are shortages of but there care professionals, but in care professionals, is non- accreditation accreditation of specialist physicians, nurses and other functions some support including doctors, nurses, existent. is not care training palliative Specialist staff. support (psychologists, social psychologists, social workers the norm. is care training palliative etc), there workers are etc. Voluntary workers generally not accredited shortages. Specialist should have participated in by national professional palliative training is a course of instruction for boards. by national accredited hospice workers. voluntary professional boards, but this palliative The specialist can be inconsistent at times. care training for the core is accredited care team by national professional boards. UK Austria Netherlands Argentina Lithuania Botswana Australia Bangladesh Iraq Myanmar Germany Belgium New Zealand Brazil Mexico China Nigeria Bulgaria Philippines Canada Norway Chile Mongolia Colombia Panama Iran Costa Finland Singapore Rica Morocco Dominican Peru France South Poland Republic Puerto Rico Korea Cuba Sweden Czech Ethiopia Romania Hong Kong Portugal Spain Ghana Rusia Switzerland Ireland Republic Denmark Thailand Greece Saudi Arabia Italy Taiwan US Ecuador Guatemala Slovakia Japan Uganda India Africa Ukraine South Egypt Indonesia Sri Lanka Hungary Uruguay Jordan Tanzania Venezuela Israel Kazakhstan Turkey Vietnam Kenya Malawi Zambia Zimbabwe Malaysia single health professional. “It might of every health. “There’s no specialist palliative care says Dr the change,” take a long time to make and medical by universities recognised officially care in has palliative “But if everyone Payne. to have “We also need she says. societies,” their out no one will come then education, basic is specialised; of training—one levels different not understanding pain management, how to doctors, so they can the other is for the family communicate or that and families with patients provide palliative care as part of primary care. and spiritual social psychological, care are part That is not there yet, although there are some of palliative care, not an optional extra.” initiatives in that direction.” Dr to try to move deficiency Yanneo agrees. “Perhaps the greatest In the US—which falls outside the top 10 in is the lack of advanced in this country education schools 14—medical at position this category, in the discipline,” he says. should to assess doctors to train be required and pain and to communicate treat effectively more be to start should the priority For some, including education care in the basic palliative © The Economist Intelligence Unit Limited 2015 32

34 The 2015 Quality of Death Index Ranking palliative care across the world “But they’ve made only incremental about and families with patients treatment in medical and education improvements training He believes Dr Byock. argues decisions, over the past 10 years,” have “There he says. be testing should institutions academic doctors been some improvements but those are small their on these skills medical as part of gaining needed.” compared to what’s degrees. © The Economist Intelligence Unit Limited 2015 33

35 The 2015 Quality of Death Index Ranking palliative care across the world Case study: Panama—Palliative care is primary care and processes and supplies. medicines for obtaining Palliative core/100 Rank/80S are present in Panama’s care programme co-ordinators 14 Quality of Death overall score (supply) 31 53.6 regions, health in basic staff who are trained as well as health t2 5 51.2 Palliative and healthcare environmen with and care for patients care services and home hospice 34 =41 41.6 Human resources advanced disease. 87.5 =6 Affordability of care investments now to be paying appear off. Panama These =38 Quality of care 47.5 in the affordability of of care category place sixth shares 32.5 Community engagement =38 and a mix of richer Cuba (with the Index It is in countries). the top 30, at position 25, in the palliative and healthcare Panama environment 31 in the overall at position and ranks category e Averag and in second income grouping of Index in the middle place Highes t countries. Palliative an d healthcare environment Panama has also acquired a global profile in Meanwhile, 10 0 of palliative the world it played role a prominent since care, 80 on and adoption in 2014 of the resolution in the drafting 60 palliative care at the World Health Assembly in Geneva (see 40 nity Co mmu n Huma box on page 43). engagement s resource 20 “Panama was very involved,” says Dr Connor. “It did a brilliant 0 persistent and championing the effort.” Much of job of being this was as a result of individual leadership. “Jorge Corrales, of the permanent mission of Panama to Geneva, counsellor took this on as a person passion.” Affordability of care Quality of care with civil team was very collaborative “The Panamanian Since 2010, when the country introduced its national palliative They “And that’s the way it should work. he adds. society,” Panama has tripled the number of patients care programme, took on board all our suggestions.” really served from about 1,000 to about 3,000 in 2014. Driving being Increasing of care remains a challenge (Panama the quality on a the country’s this and other advances has been emphasis due 38 in this category of the Index), partly slips to position care. to developing primary care approach palliative regulation to the tight of access to opioids. “The problem is relevant to smaller, less wealthy countries, This is particularly that the law governing opioids since has not changed 1954,” 35 argues care co-ordinator palliative Da Costa, Gaspar at for the the need He also highlights Dr Da Costa. explains ministry Panama’s palliative and the country’s of health care of a medical specialty in palliative care, as well as creation “Palliative he says. care,” care is part of primary champion. in palliative training care of the primary care teams increased “If you treat it as a specialisation, it’s a problem for small 41 in the human category slips to position resources (Panama because We care. specialised afford countries they cannot of the index). care training.” need that have palliative teams The next task, says Dr Da Costa, is to push for legislative to increase to services Much of the work has therefore access in the law has for a change since However, change. support A national focused care palliative standard on training. been level of government, already at the executive expressed as well programme provides advice to professional caregivers Assembly will make he is optimistic that the National the such as information on issues systems guidance as technical change. © The Economist Intelligence Unit Limited 2015 34

36 The 2015 Quality of Death Index Ranking palliative care across the world Affordability of care 4 Figure 4.1). At the bottom of the list are the funding is essential in order Government Philippines, Zimbabwe, Ukraine and Zambia, cases, In some to care. to increase access Nigeria. As well as making it into the top 10 in subsidies governments for have established this category, Cuba also top the and Panama or offer state-run care services palliative above region, list of the Americas the US, which pension services. In some countries, national third shares with Chile. place care the costs cover schemes of palliative is the case for 32 of the countries (this services One of the seem high rank of the US might The relatively in the Index). The non-profit sector often recommendations is largely operated US healthcare odd, since such as the UK, plays a role, too. In countries Dying in America of pay a high by the private and Americans sector are strongly services care and hospice palliative down is to break premiums price and for it, both in insurance supported sector. by the charitable between barriers Yet for Americans costs. out-of-pocket things medical and social after dramatically change the age of 65, when though, cases, little funding In other is made Because funding. for the federally funded they become eligible available of this form in need of care, to patients often a lot of which provides health Medicare programme, in poor countries, neither where particularly need people what insurance to those that have worked and paid insurance nor private government funding towards the end into the system. is available. Moreover, even if state-run be met of life can’t they may or subsidies are available, programmes has Even so, this reimbursement system be difficult and poorly monitored. to access traditional through use of services created incentives for greater funding models. such and as hospital stays, intensive In this category, countries are assessed on three emergency in late hospice resulting care, indicators: availability of public funding for to enrolment—particularly have as patients burden palliative care, palliative the financial James Tulsky, chair, relinquish curative treatments to be eligible for of on patients, care places and the availability Department of Psychosocial 36 Oncology and Palliative Care, reimbursements care. for palliative schemes. pension national through coverage Dana-Farber Cancer Institute Of these, availability and the public funding of the nature the complex given Moreover, financial receive to patients burden the highest of patients in need of palliative conditions weightings, of 50% and 40% respectively. the US system has its flaws, says James care, chair of the Department of Psychosocial Tulsky, In this category, Australia, Belgium, Denmark, and Palliative Care at the Dana-Farber Oncology the and the UK top the list (and Ireland Institute Cancer in Boston. high-income country while Cuba group), and share Panama second with a number of place systems in the US have created “The financing in Europe richer Germany, (Finland, countries who problems,” significant says Dr Tulsky, and Italy, the Netherlands and Sweden) contributed to the Institute of Medicine’s and Taiwan, Asia (Singapore, South Korea © The Economist Intelligence Unit Limited 2015 35

37 The 2015 Quality of Death Index Ranking palliative care across the world 37 Figure 4.1 “So one of the . Dying in America report 2014 recommendations of the report is to break down ighting) y (20% we fordability of care categor Af funding,” medical between barriers and social Rank Countr y 100.0 =1 Au stralia people a lot of what often he says. “Because 100.0 =1 Belgium 100.0 =1 Denmar k need the end of life can’t towards be met 100.0 =1 Irelan d 100.0 =1 traditional models.” through funding UK 87.5 =6 Cuba 87.5 =6 Finland 87.5 =6 many Ger Australia And while in this first place shares 87.5 =6 Italy 87.5 =6 th Ne erlands in funding models as part category, changes 87.5 =6 New Zealan d 87.5 =6 Pa nama of broader healthcare reforms in the country 87.5 =6 e Singapor 87.5 =6 h Kore a Sout in for those are creating some uncertainty 87.5 =6 Sweden 87.5 =6 Taiw an This is the case with community need of care. 85.0 17 Japan been and home has traditionally care, which 82.5 8 =1 Chile 82.5 =1 8 Hong Kong funded Care and Community the Home through 82.5 8 =1 Switzerlan d 82.5 =1 8 US wound is being This programme programme. up 77.5 =22 Canada 77.5 =22 France Support into a Home and will be incorporated 77.5 =22 ay rw No 75.0 Ka =25 zakhst an programme, “A Ms Callaghan. explains PCA’s 75.0 huania Lit =25 75.0 tugal Por =25 in the way is happening of reform amount huge 75.0 =25 Spain 75.0 nezuela =25 Ve community care services are provided,” she 70.0 Cos ta Rica =30 70.0 =30 Ecuador says. “But we are unclear happens to as to what 70.0 Mala ys ia =30 70.0 =30 Me xico palliative changes.” care as a result of those 70.0 Saudi Ar abia =30 70.0 =30 y Ur ugua 65.0 stria Au =36 In many of care comes affordability countries, 65.0 Re =36 public Czech 65.0 =36 Jordan funding. thanks to charitable This is the case in 65.0 =36 Mongolia 62.5 =40 Poland the such as the UK, which rich countries, receives 62.5 =40 Thailand 60.0 Greec e =42 top score measuring the financial in the indicator 60.0 Russi =42 a 57.5 =4 4 Argentina burden to patients, indicating that 80% to 100% 57.5 ia 4 Bulgar =4 57.5 Sout ca 4 h Afri =4 of end-of-life care services are paid for by sources 55.0 Hungar 7 =4 y However, other than the patient. much of this 55.0 Vietnam =4 7 52.5 =49 na Botswa comes in the funding, from charitable which 52.5 =49 azil Br 52.5 Isr ael =49 proportion of hospice a large UK supports and 52.5 Morocco =49 52.5 i Lanka =49 Sr palliative care services. 50.0 Ghana =5 4 50.0 ru Pe =5 4 47.5 Iran 56 45.0 o Rico Puert 57 This is also true in some developing countries. 42.5 =58 Ethiopia 42.5 Romania, only 2 out of 5 scores for example, =58 My anmar 40.0 =60 Colombia of public to availability it comes when funding 40.0 Iraq =60 40.0 =60 a ny Ke for palliative 4.2). This is (Figure care services 40.0 =60 Malawi 40.0 Tanzania =60 are available because funds in theory, although 37.5 China =65 37.5 Indonesia =65 must patients of stringent a number meet 37.5 mania Ro =65 37.5 Slov akia =65 requirements to qualify go through and must 35.0 =69 public Dominican Re 35.0 Uganda =69 even (that process bureaucratic a torturous 32.5 71 Tu rkey 30.0 Bangladesh =7 2 may not be familiar and doctors with), hospitals 30.0 2 =7 Egyp t 27.5 a 4 =7 Guatemal 3 which usage. However, it scores discourages 27.5 India 4 =7 27.5 s =7 Philippine 4 in the indicator the financial burden to marking 22.5 Zambia 77 17.5 that 40% to 60% of end- patients, which means Zimbabw 78 e 12.5 79 aine Ukr care services are paid for by sources other of-life 0 ia Niger 80 the patient. than © The Economist Intelligence Unit Limited 2015 36

38 The 2015 Quality of Death Index Ranking palliative care across the world This is largely because of generous However, been have such institutions while charitable funding. For example, it was a UK praised justifiably for their role in initiating philanthropist, Graham Perolls, who set up Dr Payne care in many palliative countries, Romania’s hospice leading programme, Casa demand, with future that to cope argues free palliative Sperantei, to offer care services. the public to embrace need countries health Casa Sperantei from has received funding palliative care and extend of palliative model the UK’s organisations charitable (including care into a broad services. of healthcare range and donors, Hospices of Hope) and corporate “We have to move one or two fantastic from the recipient of grants from USAID, has been she says. we “Really charitably funded centres,” the EU and the Soros Institute Open Society New should be moving towards palliative care for all, 38 York. in any beds that people are in.” Figure 4.2: Availability of public funding for palliative care 5 2 1 4 3 are no government There number There is a limited There are adequate There are adequate are extensive There for individuals subsidies or subsidies of government or government subsidies government subsidies government subsidies or accessing palliative care for individuals programmes programmes for individuals for individuals accessing programmes for individuals services. palliative care accessing accessing palliative care The palliative care services. accessing palliative care Where available, services. services. The qualification qualification are criteria The qualification services. criteria the qualification criteria are clear, but funds and the process clear to and the are clear criteria and funds and are unclear, are difficult and programmes access such programmes is such process to access to are difficult programmes to access. The effectiveness The easy and smooth. largely funding is largely easy and access. is not of programmes of programmes effectiveness on smooth. Information monitored. monitored. is unevenly how to access such funding The is widely available. effectiveness of programmes is routinely and adequately monitored. Malawi Bangladesh Myanmar Australia Malaysia Austria New Zealand Canada Ireland Argentina Philippines Botswana Mexico Colombia Norway Chile Japan Nigeria Dominican Belgium Mongolia Brazil Poland Republic Puerto Rico Denmark UK Cuba Panama Costa Rica Finland Czech Peru Bulgaria Romania Egypt Tanzania Singapore France South Korea Republic Portugal China Slovakia Iraq Germany Sweden Ecuador Russia Ethiopia South Africa Ghana Sri Lanka Guatemala Arabia Hong Kong Switzerland Saudi Italy Taiwan Greece Spain India Thailand Indonesia Netherlands US Hungary Uganda Turkey Uruguay Iran Ukraine Jordan Venezuela Kazakhstan Israel Zambia Morocco Kenya Vietnam Zimbabwe Lithuania © The Economist Intelligence Unit Limited 2015 37

39 The 2015 Quality of Death Index Ranking palliative care across the world Case study: US—Filling in the gaps In return give up insurance care, the patient for hospice must Rank/80S core/100 “But if you have heart treatment. for disease coverage failure Quality of Death overall score (supply) 9 80.8 and I give you a diuretic that to take fluid off your lungs, Palliative and healthcare environmen t6 78.9 says of life,” your quality your life but also improves prolongs 14 70.2 Human resources line between a bright “So this idea that there’s Dr Meier. =18 82.5 Affordability of care and palliative treatment disease treatment is an illusion.” 90.0 Quality of care =8 fee-for-service the traditional Moreover, model of =9 Community engagement 75.0 in Medicare, reimbursement providing programme the federal health insurance coverage to individuals over 65, has created United States of America incentives stays, such as hospital use of services for greater Averag e This often results in late and intensive and emergency care. t Highes hospice enrolment, the quality diminishing of care for those Palliative an d 40 healthcare environment up costs. lives and pushing the end of their nearing 0 10 “The vast majority from palliative of people who might benefit 80 care might for hospice,” they are not eligible not get it because 60 says Dr Meier. 40 Co mmu nity Huma n engagement resource s 20 that have resulted from reimbursement The gaps in coverage 0 disincentives and financial palliative to provide restrictions by private care have been filled funding. philanthropic From this has resulted in the creation of the late 1980s, in medicine, and social work, sub-specialisations nursing teaching with most now reporting the presence of hospitals Affordability of care Quality of care of research, body and an increasing care teams palliative Dr Meier says. While the Affordable Care Act—the healthcare reform 39 swept changes —has signed into law in 2010 legislation Care Act has The Affordable through system, its healthcare to the delivery it comes when to the a contribution also made This idea that Index 9 in the overall of palliative care in the US, at position care, development of palliative line a bright there’s environment and healthcare in the palliative and sixth by shifting delivery healthcare between disease category, is not the only driver of change. reform health from volume to value. models treatment and Much as has come care services in palliative of the growth While slow to it has been treatment palliative a result gaps left by US reimbursements of the coverage the emphasis implement, is on systems, says Diane Meier, director of the Center to Advance from fee-for-service away moving is an illusion. Hospital’s School of Sinai Palliative Care at Mount Icahn reimbursement a focus towards Medicine. on population health, team-based approaches to care and shared healthcare spending, responsible for the highest The patients Diane Meier, director, Center of financial assumption risk. “And with conditions she explains, have been such as frailty, those to Advance Palliative Care that creates a strong business heart failure, diabetes, functional co-morbidity, impairment, case for palliative care,” says Dr stroke and chronic obstructive pulmonary disease; conditions Meier. responsible for the bulk of deaths in the US. than insurers—rather sector is that private this means What for reimbursements is, patients The trouble are only eligible because driving the government—are they provision service from hospital, discharged been care if, having for home they have recognised it is in their financial interests to prevent need”—that have a “skills or physical a nurse is, they require room and emergency stays hospital unnecessary visits. therapist learn to take insulin or to dress a wound. to help them Dr Meier sees good and bad news in this. First, the private to And to qualify for hospice home care requires two doctors is nimbler sector and more innovative than government. And it say the patient “And to die in the next six months. is likely in care services is easier than for palliative to offer for companies most cases, we have no idea until the very end,” says Dr Meier. © The Economist Intelligence Unit Limited 2015 38

40 The 2015 Quality of Death Index Ranking palliative care across the world she returns,” quarterly to provide to shareholders beholden the public accused to of planning was famously sector, which 41 care that is says. “So the worry is that important needed run “death panels”. expensive not be offered.” might Conversely, Dr Meier worries about the profit in the long term, “The obvious disadvantage is that private sector is motive. Case study: UK—Dying out of hospital die at home waiting list” of people or in a who would rather core/100 Rank/80S care facility. community 1 93.9 Quality of Death overall score (supply) Hospice UK believes the number of people dying in hospital t1 85.2 Palliative and healthcare environmen be cut by 20%. could It is embarking to identify on research Human resources 2 88.2 the country that are working towards in place models around Affordability of care =1 100.0 is having this goal, and to assess which the biggest impact. “A Quality of care 100.0 1 explored models got to be are being lot of different and that’s Community engagement =3 92.5 part of the effort to to get people or get back there,” stay at home United Kingdom “And says. Mr Praill the feedback The evidence Averag e we’re informally is that getting t Highes you can make a difference, even if that the suggests Palliative an d healthcare environment you just have that person for the of vast majority 0 10 death.” last 24 hours before in dying people 80 In some of the UK, patients parts want don’t hospital 60 are returned to their homes 40 Co mmu nity to be there. Huma n with intensive packages of care. engagement s resource 20 remote Technology enabling 0 monitoring can support this. is for people Another option to be David Praill, former chief executive, Hospice UK cared for in community or nursing homes or hospices. Affordability of care Quality of care Marie palliative care nursing Cancer Curie Care provides home Programme, launched Choice support. and other Its Delivering die in hospital each the world, large numbers of people Across of in 2004, place helps ensure patients are cared for in their rather yet many year, spend their final days at home or would that people who used the programme choice. One study found care the palliative In the UK, this is something in a hospice. were at least 30% less likely to die in hospital, or have an community is working to change—not only to increase the admission emergency visit department or emergency hospital of care people but also to help the country’s receive quality 43 in the last days of life, than those who did not use it. cut costs. Service Health National quality that as well as increasing UK argues Hospice of care, by Age UK, a charity, found that the average research Recent people out of hospital will save NHS funds keeping and dying kept in hospital number of patients unnecessarily while increase of of hospital the availability beds for those in need waiting for community or social care rose by 19% between acute care. £1,925 on average An NHS bed costs and 2014/15. 2013/14 Age UK estimates, compared to about (US$2,980) per week, it’s a scandal that so many people “Everyone are dying agrees 42 for home £558 for a week in residential care or £357 care. But it’s also blocking to be there. want who don’t in hospitals says Mr Praill. the public waiting list,” “So if we can get people case,” “It’s a very simple until recently Praill, says David out of hospital that don’t even if it’s only for to be there, need executive of Hospice chief UK (formerly Help the Hospices). the last few days of life, it frees up beds.” that the vast majority in dying “Evidence suggests of people don’t hospital calls this the “silent Mr Praill to be there.” want © The Economist Intelligence Unit Limited 2015 39

41 The 2015 Quality of Death Index Ranking palliative care across the world Quality of care 5 Egypt East in the Middle position is in fourth While countries need to work to increase country and African grouping. This is the first access to palliative care and ensure they are poorly does overall which time Egypt, in the affordable, they must also consider the quality equal makes with Greece), 56th (ranked Index available. A crucial part of this of the services 2 It scores regionally. it into a top five position that painkillers such as opioids is ensuring to psychosocial support, it comes out of 3 when are readily available and easy to administer. that this is generally available for indicating palliative of high quality components Other and 4 out of 5 on shared and patients, families care include the availability of psychological decision-making, indicating that doctors support of and willingness and the ability inform diagnosis generally patients of their and in their doctors to involve own care patients prognosis—in fact this is enshrined in law. and accommodate individual care choices. are also For families, services bereavement the in this category, Of the indicators important as individuals struggle to cope with fundamental palliative of opioids—a availability loss. heavily, accounting care tool—is weighted most for 30% (and hence 9% of the overall Index, six indicators are used In this category, the quality of care category since has a 30% to determine of care quality the relative drugs weighting overall). While such as the presence available in different countries: restrictions designed morphine are inexpensive, of monitoring for organisations standards have hampered access abuse drug to prevent are in place in 49 of the countries (which in the since Moreover, to them. have policymakers painkillers Index), the availability of opioid and on controlling focused rather abuse substance psychosocial support and families, for patients than increasing access to these painkillers, the presence (DNR) of “do not resuscitate” are and doctors of nurses numbers insufficient policies, support for shared decision-making trained drugs in many pain control to administer satisfaction surveys. and the use of patient in developing particularly countries. places, top this list (as The UK, Sweden and Australia more Encouragingly, 30 countries in the than they do in the high-income country group) it comes to the Index 5 out of 5 when score and Europe, within the UK, Sweden while, availability of opioid painkillers (Figure 5.2), France get the highest scores. As with the that they are freely indicating available and human resources indicator, Australia scores However, worryingly, the use of accessible. among highest countries, followed Asia-Pacific such analgesics is hampered in the rest of the as Singapore position in second by New Zealand either in the Index of red because countries third. and Taiwan share or legal restrictions. tape, prejudices © The Economist Intelligence Unit Limited 2015 40

42 The 2015 Quality of Death Index Ranking palliative care across the world Figure 5.1 if legal Even barriers are relaxed, restrictions Dr Connor. remain, “We’ve had says the WHPCA’s eighting) y (30% w Quality of care categor access initiatives to improve to opioids various Rank Countr y 100.0 1 UK difficult to make out to be quite but it turns 97.5 2 Sweden 96.3 3 stralia Au the drugs available in individual countries,” he 95.0 4 New Zealan d 93.8 Hurdles include says. the fact that ministries 5 France 92.5 6 Canada use of the drugs, to approve have of health 91.3 7 Belgium 90.0 =8 th erlands Ne and import to be in have licences importers 90.0 =8 e Singapor 90.0 =8 d Switzerlan have place, and physicians to be trained in their 90.0 =8 an Taiw 90.0 =8 US use. 87.5 =1 3 Au stria 87.5 3 =1 Italy 86.3 15 Finland 83.8 6 =1 Denmar k Even in countries gaps that do well in the Index 83.8 6 =1 many Ger Journal of Palliative In a recent are emerging. 83.8 6 =1 Japan 83.8 =1 6 No rw ay in the US, which Medicine survey conducted is in 81.3 =20 Hong Kong 81.3 =20 h Kore a Sout Index, respondents the top 10 in the overall in 80.0 =22 d Irelan 80.0 =22 tugal Por more likely to state that their 2011-2013 were 78.8 24 Spain 76.3 25 Isr ael received insufficient pain relief than loved ones 75.0 26 Argentina 73.8 44 27 Poland in 2000. respondents 70.0 28 Czech Re public 67.5 Lit 29 huania 65.0 30 Cos ta Rica Nevertheless, places, in many are advances 63.8 31 Sout h Afri ca 60.0 Chile =32 resolution being First, made. the WHA sent an 60.0 =32 Mongolia 57.5 34 rkey Tu that “it is important signal, acknowledging 56.3 Uganda 35 53.8 t Egyp 36 duty of health the ethical care professionals 50.0 Puert o Rico 37 47.5 Hungar y =38 whether pain and suffering, to alleviate 47.5 ys =38 ia Mala 47.5 Pa =38 nama physical, psychosocial or spiritual, irrespective 43.8 41 Ecuador 42.5 42 Indonesia the disease of whether or condition can be 41.3 Pe ru 43 45 40.0 =4 Bulgar 4 ia cured”. 40.0 =4 Jordan 4 40.0 e =4 4 Zimbabw 37.5 47 Cuba In India, in 2014 of the Narcotic the passing 36.3 Ro mania =48 36.3 =48 Thailand Drugs and Psychotropic Substances 35.0 Tanzania 50 33.8 azil Br =5 1 legal (Amendment) Act by parliament brings 33.8 akia Slov 1 =5 33.8 =5 1 y ugua Ur wanting for physicians to prescribe clarity 31.3 xico Me 54 46 30.0 ny a =55 Ke patients. to their opioids remains work While 30.0 Morocco =55 30.0 Russi =55 a the doctors and nurses, to train to be done 28.8 58 Ghana 26.3 passing of the bill represents a major step Ethiopia =59 26.3 India =59 for India, in a forward which was criticised 26.3 Ka an zakhst =59 26.3 Vietnam =59 Human Watch Rights 2009 to report for failing 23.8 63 e Greec 21.3 Guatemal 4 a =6 facilitate painkillers of opioid to its provision 21.3 4 Ve nezuela =6 20.0 66 Ukr aine (an issue also highlighted in the report citizens 18.8 7 =6 Colombia 18.8 7 Zambia =6 EIU Quality of Death accompanying the 2010 16.3 China 69 47 15.0 Niger ia 70 Index). “Until recently, it was very complicated 13.8 Botswa =7 1 na 13.8 1 public Dominican Re =7 says Dr and dispense to procure morphine,” 13.8 1 Iran =7 12.5 74 Saudi Ar abia Bhatnagar. easier.” it will be much “Now, 11.3 My 75 anmar 10.0 s Philippine 76 7.5 77 Bangladesh 6.3 =7 Malawi 8 6.3 8 =7 i Lanka Sr 3.8 80 Iraq © The Economist Intelligence Unit Limited 2015 41

43 The 2015 Quality of Death Index Ranking palliative care across the world their to take away and to help patients opioids Uganda—which is in the top 40 of the overall of focused on that chain Uganda fear of them. when Index—is another success story it and rolled it out district by district.” events comes to painkiller access. “In 1994, Uganda still We’re a statute introduced that allows properly graduating As well as enabling to deal with patients assistants medical nurses, trained and clinical wonderful, well- role for palliative an important physical pain, was officers oral morphine—that to prescribe meaning clinicians, care is to help people make appropriate Dr Luyirika. very early The on,” says the APCA’s not who have This illness. with terminal faced when decisions Ugandan government, which has ring-fenced been trained to in the quality is given a 15% weighting of care of morphine, supports funding for the purchase have difficult category. the free availability of oral morphine for anyone conversations Africa who needs it. Hospice has Uganda All too often, not enough emphasis is however, and to guide become a centre of production and distribution to the views given of the patients themselves or through patients country of morphine for the entire by taking those of their families. in countries And even powdered imported it and turning morphine in making decision such that score as the well on this indicator, 49 into liquid, or oral, morphine. situations in which scores 5—indicating US, which that doctors cure is unlikely. and patients argue in care—some are partners the legislative to making changes In addition that more patient to support to be done needs has worked Uganda needed for this to happen, choices. use of opioids. to promote levels at other “It’s Ira Byock, executive director and chief medical officer, a much than just policy programme bigger Institute for Human Caring at and nurses doctors training This also means to to work with says Dr Harding. change,” “You need Providence Health & Services have believes Dr Byock conversations. difficult local police, to educate clinicians to prescribe Figure 5.2: Availability of opioid painkillers 5 2 4 3 1 available Freely and accessible but access is Available, Not easily available and/or Illegal in limited Only available by restricted somewhat access through is restricted circumstances red tape bureaucratic laws and bureaucratic red tape or prejudices Argentina Malaysia Chile Turkey Brazil Indonesia Bangladesh Nigeria Australia Jordan Uruguay Bulgaria Iran Botswana Philippines Netherlands South New Zealand Russia Egypt Mexico China Africa Austria Belgium Arabia Saudi India Mongolia Colombia Norway Canada Poland Morocco Iraq Sri Lanka Cuba Rica Dominican Panama Kazakhstan Tanzania Costa Portugal Republic Puerto Rico Czech Peru Kenya Zambia Republic Denmark Singapore Ecuador Romania Malawi Zimbabwe Finland Slovakia Ethiopia Thailand Myanmar France Korea Ghana Uganda South Germany Spain Greece Ukraine Hong Kong Sweden Guatemala Venezuela Ireland Switzerland Hungary Vietnam Israel Taiwan Italy UK US Japan Lithuania © The Economist Intelligence Unit Limited 2015 42

44 The 2015 Quality of Death Index Ranking palliative care across the world this is having suggests Research a negative to be done in this respect. “We’re needs more In the impact Journal of care. on end-of-life still graduating well-meaning wonderful, about Palliative Medicine report, one in seven not been have trained “who he says, clinicians,” that their stated respondents member family to have conversations and to guide difficult had received that they would treatment medical making decision through patients in situations not have wanted. cure is unlikely.” in which The World Health Assembly resolution many After a major years of advocacy, 2014 marked step to take action and then report back on progress member states Health care when, for palliative forward at the 67th World palliative care programmes. in implementing their a resolution adopted in May, the body (WHA) Assembly is that it’s not a law or treaty of a resolution “The importance care as a component “Strengthening of palliative of titled: but it’s at least on,” he says. has agreed everybody something 48 comprehensive care throughout the life course.” up—they to follow need ministers “And of health have some sets the policy legitimises “The WHA resolution context, kind of moral back to the WHA.” to report obligation the stimulus and provides engaged governments for getting However, work. of the WHO’s is just the start the resolution Payne, emeritus professor says Sheila engagement,” at the to monitor established have been of access levels Task forces Observatory on End of Life Care at Lancaster International to essential of the development and to support medicines University. blueprints care service for palliative health system and tools calls for member states to integrate palliative The resolution delivery. care into national training systems, healthcare to improve “But the biggest are countries challenge is that there access and doctors for nurses and to increase to opioid there’s three where He identifies says Dr Ullrich. nothing,” among other initiatives. It was agreed on largely as analgesics, is no where countries no services and there exist categories: of the energetic campaigning of Panama, along with a result to be expanded; and use of opioids; those need services where several other and to Panama “We have to give credit countries. those where services exist but are not well organised. who put this on their agenda others, in Geneva,” says Andreas the need to work with health professionals He also stresses medical a senior Ullrich, in the WHO’s control for cancer officer whose on training and practice has traditionally focused Department and Health Promotion. of Chronic Diseases for the dying. than caring “Medical the sick rather healing Dr Ullrich for implications has significant says the resolution to cure,” doctors “So this is a says Dr Ullrich. are still trained of palliative the future it raises global First, awareness care. change.” culture it requests In addition, services. for palliative of the need © The Economist Intelligence Unit Limited 2015 43

45 The 2015 Quality of Death Index Ranking palliative care across the world Children’s palliative care ranks countries by their Quality The 2015 Index of Death to dispense appropriate painkillers, too. are hesitant Many for reasons of care to adults, of palliative provision principally “We know you can give morphine to a newborn but you have to data on the provision The lack of comparable data availability. out that dose very carefully,” she says. “So there’s a fear work are too often needs that their reflects of such care to children of using opioids.” in this area. ignored in the availability shortfalls This has led to severe of palliative group and there’s has been “This marginalised over the years care for children. of children’s “The UK has the best spread no reason for them says Joan Marston, chief to be left out,” only reaching but they’re care services and palliative hospice Children’s Africa-based of the South executive International says. who need of the children 25% it,” Mrs Marston Palliative Care Network. “But people are starting to realise some Encouragingly, however, developing countries are rights a human children—it’s that you can’t issue.” exclude children’s in developing rapidly moving ahead palliative of obstacles hamper the development of children’s A number care services. for example, children’s palliative In Malawi, palliative care. Their needs are diverse of the widely because has and the government care is now part of national policy different age groups, from babies to young and the people, committed to rolling out training in the regions. In the Indian complexity conditions demands of their sophisticated more state of Maharashtra, children’s palliative care is also included most take place of the deaths in low-income Also, services. and its government policy for money aside in state is setting and the developing identified with few being world, countries care provision. with a high HIV in countries as in need of care—particularly well as in some of these Eastern In many countries—as burden. such as Belarus, European and Poland— Latvia nations there countries, Even in developed are challenges, care is happening palliative children’s on developing progress it is relatively easy to talk communication being one. For while of one or several “If individuals. due to the efforts passionate or a young and pain levels, symptoms about to an adult person care, find that always you’ll palliative you look at children’s and impossible say, a three-year-old with, this is harder with a ‘We need who said, was someone there at the beginning, right baby, demanding sophisticated diagnostic skills. about to do something says Mrs Marston. the children,’” “A lot of clinicians are barriers. to other points Mrs Marston is also critical. She adds that listening to children themselves children, because children’s care needs afraid of looking after “Having the child their talk about person and the young the are so complex and because of the emotions that surround powerful.” needs—that’s really she says. family,” © The Economist Intelligence Unit Limited 2015 44

46 The 2015 Quality of Death Index Ranking palliative care across the world Community engagement 6 network a strong for example, In Belgium, of When it comes to the end of life, the role workers while volunteer exists. In New Zealand, And when is important. of the community remains to be done, work public awareness of and families workers communities, volunteer palliative care planning is care and advance take on more it can for care, responsibility which Hospice while increasing, New Zealand, associated the costs reduce stays with hospital hospice has movement, the country’s leads admissions. and emergency The question for goal in its engagement community a robust the incentives is how to create policymakers strategic plan. and support systems needed to encourage more involvement. community and philanthropic government Although underpins for palliative care clearly support the care extends beyond palliative Moreover, the and type of services number networks on offer, death medical treatment of patients. For while is of volunteers the reach of those can help extend human experience, a universal in today’s world Costa Rica has developed services. For example, people to talk find it hard to face and are reluctant an extensive and of day centres network about death and dying. It is therefore important 50 volunteer teams. for community of the awareness to raise groups open role of palliative care and to encourage cited as demonstrating the benefits Also often discussions about end-of-life choices. of of volunteer networks is the Indian state In this category of the Index, two indicators are Kerala, where MR Rajagopal, chairman of performance—public to assess countries’ used of the director Kumar, India, and Suresh Pallium awareness care and availability of palliative pioneered of Palliative Institute have Medicine, 51 of volunteer workers for palliative Public care. of palliative models community-based care. of 70% and volunteer has a weighting awareness with its long history However, Kerala, workers 30%. religious and strong politics of socialist top the list in this and New Zealand Belgium models. institutions, is uniquely suited to such category, while France and the UK share second for policymakers The question is how to build place (as in the high-income country group). volunteer where the socio- in regions networks top the US and Canada again In the Americas, may be very different. conditions economic Rica are in Brazil and Costa the list. But here, are features “There that are atypical,” of Kerala third place. Meanwhile, New Zealand is first in says Dr Payne. what admire “I very much group, with Japan and Taiwan in the Asia-Pacific happens is that it does but my concern in Kerala, and Israel Zimbabwe Uganda, 2, while position not spread.” are the top three among Middle East and African countries. © The Economist Intelligence Unit Limited 2015 45

47 The 2015 Quality of Death Index Ranking palliative care across the world Figure 6.1 as having Spain models and Colombia She cites relatively new be replicated: that could through Community eng ighting) 0% we agement (1 a model is implementing legislation Colombia Rank Countr y 100.0 =1 Belgium social care that integrates of palliative support 100.0 =1 d New Zealan 92.5 =3 France and healthcare. Spain, meanwhile, 4 on scores 92.5 =3 UK 82.5 in this category, the second meaning indicator =5 many Ger 82.5 =5 Irelan d it generally workers has sufficient volunteer to 82.5 =5 Japan 82.5 =5 Taiw an meet needs of these the country’s and that some 75.0 =9 stralia Au 75.0 =9 Canada and are involved training in fundraising. receive 75.0 =9 th Ne erlands 75.0 =9 No ay rw 75.0 =9 US 65.0 14 h Kore a Sout cases, to can act as a barrier In some legislation 57.5 =15 Au stria 57.5 volunteer for example, while In France, work. =15 k Denmar 57.5 =15 Finland institutes three offer training to volunteers, 57.5 =15 Italy 57.5 =15 Poland mean palliative care units must regulations 57.5 =15 d Switzerlan 57.5 Uganda =15 connection a formal establish with volunteer 50.0 =22 azil Br 50.0 ta Rica =22 Cos and volunteers associations in are limited 50.0 tugal Por =22 50.0 e Singapor =22 tasks they can perform. “It’s hard to be a what 50.0 =22 Zimbabw e 42.5 =27 Chile volunteer,” says Dr de la Tour. “The is training 42.5 =27 ael Isr 42.5 =27 Mongolia too long and there they can’t are many things 42.5 Slov =27 akia 42.5 =27 Sweden as organising such activities do.” She cites 42.5 =27 aine Ukr 40.0 Jordan =33 parties, making flower arrangements birthday 40.0 Sout h Afri ca =33 40.0 or doing “And the shopping. a hospice with =33 Spain 40.0 =33 Zambia the doing volunteers have can’t a garden 35.0 Hungar 37 y 32.5 =38 Argentina she adds. gardening,” 32.5 Greec e =38 32.5 =38 Hong Kong 32.5 =38 Indonesia 32.5 =38 nama Pa efforts are also important it when Community 32.5 Tanzania =38 32.5 Ve =38 nezuela to raising awareness of palliative care and comes 25.0 =45 China 25.0 to encourage more people to talk about death =45 public Re Czech 25.0 =45 Ecuador and dying. of This is the goal, for instance, 25.0 =45 t Egyp 25.0 a Guatemal =45 the Dying Matters Coalition, a 30,000-member 25.0 India =45 25.0 an Ka zakhst =45 body in 2009 established by the UK’s National 25.0 =45 a ny Ke 25.0 Lit =45 huania Council Care. for Palliative It aims “to help 25.0 =45 Malawi 25.0 ia ys Mala =45 people openly dying, death talk more about 25.0 Me =45 xico 25.0 =45 Morocco issues these and to make and bereavement”, 25.0 =45 ia Niger 25.0 =45 Pe ru life “accepted as the natural part of everybody’s 25.0 s Philippine =45 25.0 =45 Puert o Rico community activities It does so through cycle.” 25.0 =45 a Russi 25.0 i Lanka =45 Sr and the distribution of resources and events 25.0 Thailand =45 25.0 as well as its and leaflets, like DVDs, posters y ugua Ur =45 17.5 Bangladesh =66 52 website. 17.5 Bulgar ia =66 17.5 Colombia =66 17.5 =66 Cuba 17.5 =66 Ethiopia informally, of number in a growing More 17.5 =66 Ghana 17.5 Iraq =66 offers countries Death a movement called Cafés 17.5 =66 mania Ro 17.5 abia =66 Saudi Ar participants where over tea and cakes meetings 17.5 =66 rkey Tu 17.5 Vietnam =66 on death conversations can hold open and share 7.5 77 Iran ideas their with others. and concerns 0 Botswa na =78 0 Dominican Re public =78 0 anmar =78 My © The Economist Intelligence Unit Limited 2015 46

48 The 2015 Quality of Death Index Ranking palliative care across the world Figure 6.2: Public awareness of palliative care 5 4 3 2 1 Public has no understanding Public has a limited Public has a mediocre has a somewhat Public Public has a strong of palliative or awareness understanding and understanding and and understanding good understanding and There care services. is no of palliative awareness awareness of palliative awareness care of palliative of palliative awareness care information on palliative care services. to no Little Limited care services. services. information Some on services. Information from care available on palliative information on palliative information on palliative care is palliative care is readily government portals and care is available from care is available from available from government available from government mechanisms. community and portals government portals government and portals and community and community portals mechanisms. community community mechanisms. mechanisms. mechanisms. New Zealand Australia Netherlands Austria Poland Argentina Malawi Botswana Iran Belgium UK Norway Brazil Portugal Bangladesh Malaysia Dominican Myanmar France Canada Taiwan Chile Singapore Bulgaria Mexico Republic Germany Ireland US Rica Slovakia China Morocco Costa Denmark Japan Korea Colombia Nigeria South Finland Sweden Cuba Panama Hungary Switzerland Czech Peru Uganda Israel Republic Philippines Italy Ukraine Rico Ecuador Puerto Egypt Mongolia Romania Zimbabwe Ethiopia Russia Saudi Arabia Ghana Greece South Africa Guatemala Spain Hong Kong Sri Lanka Tanzania India Thailand Indonesia Iraq Turkey Jordan Uruguay Kazakhstan Venezuela Kenya Vietnam Lithuania Zambia frequent and meaningful conversations about The challenge is to scale such as up initiatives death and the end of life. “It’s a tiny part of the population Cafés. Death accessed, and mainly the cognoscenti,” says Based Project— in the US, the Conversation palliative care advocate Yvonne Australia’s founded by Ellen Goodman and Len Fishman Dr Sleeman we talk McMaster. agrees. “The more and working in collaboration with the Institute it will be,” about in society the better the issue people Improvement—helps for Healthcare she says. “But the people who go to Death Cafés talk about wishes for end-of-life care. It their to go to Death who choose are people Cafés, not kits that are downloadable free starter produces man on the street who would not the average and offer its website from guidance on how a conversation on death and dying—that’s have on death. to initiate a conversation “We want to engage.” you really the person need you to be the expert on your wishes and those tells users. the website ones,” of your loved scores 4 out of 5 on the public In the US, which the doctors or nurses. Not the end-of-life “Not a number 6.2), indicator awareness (Figure You.” experts. more to encourage are working of initiatives © The Economist Intelligence Unit Limited 2015 47

49 The 2015 Quality of Death Index Ranking palliative care across the world Palliative care and the right to die While the voices calling for more and better is not a substitute says Ms for palliative care,” so are those palliative louder, care are growing Callaghan. for the right camps advocating to die. Both dying Increasing debate about assisted argue that they are supporting would a better represents for the field, says Dr Byock. a failure in palliative quality of death. Yet those working “The reason laws are polling that assisted suicide care argue that legalising assisted and hospice has a well of days is that the public so well these should suicide to not be seen as an alternative and distrust fear, anger about the care they will palliative care. good families receive and how they and their will die,” that The reason granting In some countries, citizens the right the hard truth “And is that this is well he says. suicide assisted Around to die is on the agenda. the world, founded.” lawmakers or introducing are considering laws are polling and surgeon writer Being Mortal In his book , to allow terminally ill patients to take legislation so well these days that the high number suggests Atul Gawande their own lives. assisted suicide seeking in the of people is that the public for example, Canada’s In February 2015, Netherlands of success. is not a measure “Our has a well of fear, court ruled that adults suffering supreme after goal, ultimate but a death all, is not a good anger and distrust 62 pain would have the right unending extreme, life to the very end,” good he writes. 53 about the care they In the UK, the to doctor-assisted suicide. there Of course, be cases will always where Bill was defeated in parliament Assisted Dying will receive and end suffering. care cannot palliative Dr Gawande some despite in September 2015, showing polls how they and their goes on to say he would support laws permitting 54 And in of the public supported it. a majority prescriptions allowing people to end their lives families will die. some have been and territories states Australia, at the end of life is unavoidable suffering when And the hard truth considering a introducing legislation, while and unbearable. drafted. has been federal bill on assisted suicide is that this is well And, as Dr Gawande people giving argues, the “It’s a very active space,” says Ms Callaghan of founded. even if they option anxiety, their can alleviate Palliative Care Australia. never use the lethal medications. Barbara In some such legislation has existed for places, & Choices, of Compassion Lee, president Coombs years. many In the US, for example, the state Ira Byock, executive director that pushes organisation non-profit a US-based has allowed to take self- of Oregon its citizens and chief medical officer, at the end of life, choice patient for greater Institute for Human Caring at administered medications prescribed by a lethal enormous peace “It bestows agrees. of mind,” Providence Health & Services doctor since under the Death With Dignity 1997 “It’s knowing that is the it’s there she says. 55 of Washington a The state passed Act (DWDA). impact.” primary 56 57 in 2013. as did Vermont similar law in 2008, that in Oregon, for example, the It is telling In Europe, meanwhile, Switzerland’s law is prescriptions of DWDA of recipients number permitting has been assisted in force suicide of than the number higher always substantially 58 extended In 2014, its Belgium since 1942. 63 “There will still deaths from the drugs. resulting 59 while in the 2002 euthanasia law to children, control and that this is about for whom be people into effect that went legislation Netherlands of the says Dr Tulsky to change,” going is never both permitting a step further, went in 2002 Dana-Farber Cancer Institute. suicide and euthanasia certain under assisted 60, 61 people that most argues However, Dr Tulsky conditions. palliative care will not choose who receive good But while the right in some to die is a reality their death. “In general, if you can to hasten and the subject in many of debate countries and the symptoms manage and the social that others, advocates for palliative care argue psychological up at the end of issues that come for this reflects an inability to care adequately life, it should not be necessary.” “Euthanasia people at the end of their lives. © The Economist Intelligence Unit Limited 2015 48

50 The 2015 Quality of Death Index Ranking palliative care across the world Case study: Taiwan—Leading the way The quality care in Taiwan is high (it is tied for of palliative Rank/80S core/100 the eighth place in this category), with a focus on improving Quality of Death overall score (supply) 6 83.1 last days. of a patient’s quality made have been steps Major Palliative and healthcare environmen t5 79.6 a professor Dr Siew Tzuh Tang, Gung at Chang in recent years: 72.2 9 Human resources improvement substantial reports of Nursing, School University 87.5 =6 Affordability of care between her team’s in several end-of-life indicators national less while For example, and 2011/12. in 2003/4 surveys =8 90.0 Quality of care of their than half of terminally patients ill cancer were aware Community engagement =5 82.5 prognosis in the first survey, this number increased to 74% by medical Use of aggressive 2012. patients for cancer treatments Taiwan in the last month also of life, such as CPR and intubation, e Averag declined over this period. t Highes Palliative an d healthcare environment cultural down to break in particular engagement, Community 10 0 Such a focus. has also been discussing against taboos death, 80 care of palliative but proponents taboos are still widespread, 60 are attempting to change that by introducing discussions of 40 school from primary system into the education life and death Co mmu nity Huma n engagement resource s 20 university, through and by changing the mindset of patients. 0 “Family members feel that for the patient to die without CPR of the Lotus is not filial,” says Dr Rongchi Chen, chairman people to teach “But we are trying Care Foundation. Hospice find its expression that filial duty and love should in being Affordability of care Quality of care at the end of his or her life, and in member with the family encouraging acceptance of disease and peaceful passing.” near the top of the Quality of Death Index, ranks Taiwan professor at NTU emeritus Chen, to Ching-Yu According Its high position is first in Asia and sixth overall. coming Hospital, in the area of palliative innovations one of Taiwan’s of the result of a number of factors. Firstly, the availability the emphasis on spiritual care as even more care has been in recent years, palliative services has steadily grown with important like Organisations management. than symptom more than 50% to 77 programs increasing programs hospice the Lotus have provided training Care Foundation Hospice during 2004 to 2012, and hospital-based palliative care teams monks for Buddhist as support spiritual to provide and nuns 64 Taiwan ranks fifth overall in the multiplying from 8 to 69. that around estimates Dr Rongchi care. part of palliative Chen environment palliative category as a result. and healthcare identify 70% of Taiwan’s and reports as Buddhist, population to an terms resources In human it also does well: in addition by patients very positive and their families responses to the increase in palliative care teams, other medical specialists in of Buddhist chaplains. presence are receiving or neurology related fields such as nephrology training on palliative care and now incorporate it into their A glimpse of the future of palliative care treatment plans. Taiwan is also a pioneer in technological advances to improve while efficiency and palliative care rights patient enhancing Palliative care services Taiwan has the are also affordable: experience. To take one example, all Taiwanese citizens have score (together with a host in this category second-highest an insurance card with their medical information, and elderly countries). Taiwan’s National Health Insurance of richer end-of-life specific to make are encouraged patients decisions (NHI) plays system a central role in the provision of palliative their wishes in the event about that a “do not resuscitate” by determining insurance coverage and the level of care, to be made. is then (DNR) decision needs This information for specific reimbursement services. While previously only directly linked to their insurance at so that registering card, cancer patients in the last five years coverage were eligible, any health brings up this information. care facility types of illness, has been to include several other extended levels have increased for both home and reimbursement Tzuchi University Hospital an innovative has also piloted more for incentive providing care, and hospital-based visits program monitoring for remote using care, of palliative institutions to offer palliative care. for tracking patients’ as a platform and tablets smartphones © The Economist Intelligence Unit Limited 2015 49

51 The 2015 Quality of Death Index Ranking palliative care across the world conditions medical and for enabling communication between to keep pace will be essential and this kind of innovation through and medical specialists Skype. The caregivers with the health care needs of Taiwan’s ageing population. online care instructions and community platform also includes “The proportion of our population over 65 has doubled from to ensure languages in six different and is available resources, elderly with many said Dr Wang, 7% to 14% in just 20 years,” are also able to use the service. aides health that foreign patients to palliative access with limited areas in rural living Hospice Lotus of the Heart chief Wang, Dr Yingwei at Tzuchi with additional hospitals community to provide Efforts care. that the outcomes reports Hospital, General and caregiver training and access to palliative care experts are underway, and expects very promising, feedback that the have been call that links including a nationwide bi-weekly conference in coming program will be expanded years. palliative care practitioners to share their experiences and cases. discuss recent in tech-savvy Taiwan, The use of new platforms is welcomed © The Economist Intelligence Unit Limited 2015 50

52 The 2015 Quality of Death Index Ranking palliative care across the world The 2015 Quality of Death Index— 7 Demand vs supply to age. These likely are indicators age-related In debates how to improve care for dying about and importance. weight equal given non- with incurable living and those people communicable healthcare providers diseases, the results of the headline supply Index Taking and policymakers are focused on increasing and mapping them against the results of the the availability and quality However, of care. (Figure demand it is possible 7.1), analysis programmes out, may stand while individual of where the greatest to gain a picture gaps in meeting the needs of of countries the success exist care provision in palliative worldwide. also depends on a critical citizens their factor: of the Countries in the top right-hand corner and supply. demand the size of the gap between chart—such as Australia, New Zealand, the UK, high demand the Netherlands and Canada—have For this reason, component of the an important provision. good but also relatively the For them, of Death Index is a new demand Quality 2015 gap is narrowest. section, analyses countries’ relative which need is for palliative care. While the supply Index of the left-hand Those in the bottom corner indicators in five categories, based on twenty scatter but also low low provision have chart analysis on three the demand is based demand. countries are those on Most worrying indicators: that (indicating side of the chart the right-hand care • The burden of diseases palliative for which demand is highest) but that do less well when is necessary (60% weighting) Bulgaria, it comes include These to provision. • The old-age dependency ratio (20%) in the most Cuba, and Hungary—and, Greece from of ageing The speed • of the population China. case, striking 2015-2030 (20%) is one of the few lower China countries income are diseases with certain that patients Given with high demand partly for palliative care, 65 care palliative to require likely more , the first as of conditions incidence such due to rising of those diseases indicator measures the burden cardiovascular disease, with this accounting 66 the highest This is given country. for each for one-third of all deaths in China in 2012. in the weighting considering its importance with Moreover, China’s demographic profile, care: prevalence literature around palliative to more than 13% of the population expected as cancer and Alzheimer’s will of diseases such be aged 65 or over by 2020 according to EIU for palliative care services. drive demand The estimates, compared to 11% globally (and 6% that take into account factors and third second for palliative need greater implies in India), palliative needed care will be more urgently the care—and healthcare in general. “China’s it is rapidly is, and the more a population older challenge ageing population will be a serious © The Economist Intelligence Unit Limited 2015 51

53 The 2015 Quality of Death Index Ranking palliative care across the world Figure 7.1 y Palliative care demand vs suppl n UK Au stralia New Zealan d France Irelan d Belgium Taiw an Good provisio Ger many erlands th Ne US Canada Switzerland e Singapor Sweden Japan No ay rw Au stria Denmar k a h Kore Sout Finland Italy Hong Kong Spain Por tugal Mongolia ael Isr ta Rica Cos Poland huania Lit Chile Pa nama Argentina Czech R epublic Cuba Mala ys ia Uganda Ur ugua y (Supply) Ecuador Jordan h Afr Sout ica Hungar y xico Me Br azil Ve nezuela Thailand Tu rkey Puer to Rico a Russi Morocco Indonesia Ghana Quality of death overall score ru Pe Tanzania t Egyp e Greec Slo va kia Ka an zakhst Zimbabwe Bulgar ia Zambia Ro mania Ke a ny abia Saudi Ar Malawi i Lank a Sr aine Ukr Ethiopia Vietnam India Colombia China Guatemala Iran ana Botsw Dominican R epublic My anmar ia Niger Philippines n Bangladesh Iraq Poor provisio High demand for palliative car e Low demand for palliative care Demand hard demand, many will also need to work for the health system,” says Ning Xiaohong, to meet rising future need as the incidence an oncologist at Peking Union Medical College and of non-communicable disease increases Hospital. populations grow older. The demographic their care is not the only treatment “Palliative [needed ageing process is fastest developing among by] the ageing says Cheng population,” Wenwu, countries. that now have Of the 15 countries Care of the Department director of Palliative more people, seven are 10 million older than 67 at Fudan University Cancer Hospital. “But as countries. developing care [due to the for medical demand increasing ageing population] places on clinics and a burden of the demand In Nigeria—near the bottom hospitals, palliative care facilities will be needed is the country’s challenge analysis—the size, of that pressure.” some to help relieve says Dr Luyirika. “Nigeria has a very big and population too, and it’s a big country diverse on the left side of the at countries Looking than so to make an impact, they need to more relatively of their in spite chart, low current “There he says. triple are lots of their efforts,” © The Economist Intelligence Unit Limited 2015 52

54 The 2015 Quality of Death Index Ranking palliative care across the world high-quality services, the picture is complex. that are happening of initiatives but because “In the UK [which is in the top bracket of the to say they are the huge population, it’s difficult we are polishing analysis], the brass— demand The coverage progress. making is still very low.” says well,” doing care and we’re got good we’ve in countries with low demand, this In general, Dr Sleeman. “But then I spend a lot of time As overall rapidly. is changing of affairs state enough, not doing we’re saying the population healthcare provision and people live improves too much spending is ageing and we’re money longer and the incidence of non-communicable on things that don’t people’s outcomes improve for palliative demand rises, diseases care at all.” will only increase in years to come. In Sub- And while the situation about he is talking in Saharan Africa, for example, the World Health is also near the top in terms the US—which of expects the incidence of cancer to Organization be could comments demand—the of Dr Byock diseases and cardiovascular by 127% increase worldwide. applied “The time for incremental between by 105% to increase stroke) (including 68 “And hurry he says. we’d better change is over,” and 2030. 2012 because and the of the population with the ageing that even remembering it is worth Of course, in are continued growth of chronic illness, the trends met by is being countries where high demand swiftly.” not in our favour. We have to move © The Economist Intelligence Unit Limited 2015 53

55 The 2015 Quality of Death Index Ranking palliative care across the world Conclusion As seismic the demographic bring home shifts in palliative care and easier access to opioids. scale in governments facing of the challenges Assembly resolution And the World Health on populations, palliative care for ageing providing a powerful for incentive palliative care creates the EIU published since up the agenda has risen states care palliative all member to develop its first Quality Index. Of course, of Death policies. changes of the Index since in the methodology it should not be forgotten that Nevertheless, in the number as well as an increase of 2010, that occupy the those countries—even for most countries included, it is not possible mean to work of the Index—much ranks highest remains make comparisons. However, it is clear that direct in need that those of care to ensure to be done to efforts up their countries some are stepping are not neglected. of the developing And in much have care. all citizens ensure access to palliative access to palliative care is either a rarity world, For example, Japan, which performed relatively or non-existent. 14, poorly is now at position Index, in the 2010 nations For wealthy with sophisticated reflecting recent initiatives such as its increased is moving healthcare the challenge services, attention patients. care for cancer to palliative to managing illness of curing a culture from was of Kerala And while the Indian in 2010, state of viewing Instead conditions. long-term a lonely beacon of hope in a country otherwise the palliative as is often care as a cost centre, its citizens to provide failing with suitable of is needed recognition case in the US, greater initiatives painkillers and palliative care, care in terms the economic benefits of palliative of the country, parts in other are emerging hospital and avoided emergency stays of reduced changes will make it while recent legislative room visits. considerably easier for Indian physicians to morphine. prescribe populations, ageing countries, In developing and increasingly urbanisation unhealthy rapid made been have advances policy promising Other healthcare systems must cope lifestyles mean 2010, since such as Colombia’s 2014 palliative rates with rising of chronic disease such as is there In Panama, care law, for example. and diabetes while they still battle lung cancer changes optimism that legislative will pave against and infectious mortality and infant child specialty of a medical the way for the creation diseases. © The Economist Intelligence Unit Limited 2015 54

56 The 2015 Quality of Death Index Ranking palliative care across the world education and training clearly involve While they face may be the challenges But while investment, interventions not all these a number different, of crucial interventions require substantial necessarily expenditure. help all countries could of the quality improve found, as studies palliative care can have And, of care and make it available to greater numbers with the compared when cost effective be highly people. These include: alternatives. framework that provides a legislative • Creating live longer As far greater numbers of people for easier such as opioids to painkillers access but with one or more conditions—requiring healthcare and training to administer workers care can ease the treatments—palliative complex these drugs burden systems and reduce on healthcare pain care • Creating mechanisms that make palliative for the individual. is even and suffering There more affordable that need it for those evidence that palliative care not only to suggest cases, some quality enhances such as of life—in some • Integrating care of palliative level breathlessness, it can lung cancer and end-stage into the education training of all healthcare 69, 70 even extend life. professionals Whether quality it is to cut costs, increase of • Increasing and community- to home- access survival, life or improve developing patients’ care palliative based care services be a priority should palliative for and support • Providing for the families worldwide. system healthcare every Countries voluntary who can extend access to care workers the inevitable to act fast. Given will need increase in demand, if governments are not • Increasing public awareness of palliative care to become negligent in meeting the needs of tens of millions of individuals and families • Encouraging more open conversations about going through what are difficult and painful death and dying experiences, a business-as-usual approach will no longer suffice. © The Economist Intelligence Unit Limited 2015 55

57 The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ Appendix I: Quality of Death Index FAQ than care development individually). (rather What is the Quality of Death Index? Why the Other influential research studies include was it developed? 72 EAPC Atlas of Palliative Care in Europe (2013) , Unit The Economist In 2010 Intelligence for developed by the European Association that assessed developed an Index (EIU) Palliative Care, which outlines services, policies and quality of the availability, affordability and strategies in 53 European countries, and The study, care in 40 countries. end-of-life the Atlas of Palliative Care in Latin America was the commissioned by the Lien Foundation, 73 2015) (2012, which presents the palliative care first that objectively countries in the ranked situation in 19 Latin American countries. care. provision of palliative and end-of-life The a and sparked attention much garnered study Quality The 2015 of Death Index has several series As a of policy debates around the world. in these papers: distinctions from it is wider the Lien Foundation a new commissioned result, scope than the regional studies and more and take its scope version of the Index to expand in its methodology in-depth to the compared in palliative global into account developments Global of Palliative Care at the End of Life. Atlas care in recent years. Index The 2015 Quality also offers of Death an objective and rank to compare framework was developed as a The Quality of Death Index palliative care developments in 80 countries. and expand tool to complement policy-focused ranks list of such an extensive No other study literature palliative around on the existing the Index countries: covers 85% of the world’s that ranks It is the only study the quality care. population and 91% of the population aged of provision of palliative care at the country 65. above Since level. there in 2010 its first publication have several studies regional been and global What does the 2015 version of the Index The research with palliative assessing care. cover? Global of countries is the coverage the largest on end-of-life we focused version, In the 2010 71 Atlas of Palliative Care at the End of Life (2014) , revised we have In this version care for adults. Health Organization and developed by the World the scope to refer to palliative care for adults. Care Alliance. Worldwide Hospice Palliative The defines as the the WHO which Palliative care, outlines need for palliative care study global the lives of patients to improving approach and barriers to its development, and classifies facing life-threatening illness, has a wider scope 234 countries in four major groups of palliative © The Economist Intelligence Unit Limited 2015 56

58 The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ of a policy, but also the effectiveness presence care typically care. End-of-life than end-of-life of its implementation). The 2010 version life. to care in the last days of a patient’s refers based on 24 indicators in four countries ranked for the 2015 Index also includes Research the 2015 version ranks 80 countries categories; of demand which care, for palliative analysis on 20 indicators based in five categories. where to study an opportunity gaps offers and in scope are different As the two versions care between provision and need for palliative of a country’s comparisons direct framework, is most pressing. The results of this demand ranking 2010 and 2015 are not possible. between are presented analysis separately in Part 7 of the paper. Why do we have five categories in How different is the 2015 Index from the assessing palliative care? review In our literature with and consultation 2010 version? from our expert the and building panel, advisory of countries the number version In the 2015 found 2010 Index, the EIU research team that 40 to 80. The included has been increased from crucial in the provision were key themes several from the 2010 is also structured Index differently of the palliative (see table care environment version. below). In developing the revised framework the EIU conducted an in-depth literature review and for below to the full methodology Refer Based panel an expert consulted on of advisors. category, of indicators data in each descriptions their and palliative care developments feedback the data normalisation sources, and the process in the last five years, some removed we have scoring criteria for qualitative indicators. for which data was not uniformly indicators What is the demand analysis? or reliable (such as average available payment analysis assesses countries on their The demand by patient for end-of-life care); added new need for palliative on three care based indicators: ones (such of psychosocial as availability burden palliative require that often of diseases which for patient support and families, had in a country of elderly care, the proportion and in the literature); importance gained of elderly this proportion is and how quickly in others methodology refined the scoring (for For the first time in palliative changing. care the indicator the existence example, around analyses research, our Index the provision of policy of a government now not only assesses Category Justification assessing This category includes indicators environment the general palliative and Palliative and healthcare environment, as well the existence of a well-articulated, effective healthcare and widely government strategy. implemented resources Human specialists, medical professionals and support staff are key in ensuring Trained available services are delivered in a professional and high-quality fashion. Affordability of care care is available, it needs to be affordable. In this category we assess Where funding expenses for accessing palliative care. public as well as out-of-pocket of care Quality of care is the most important category Quality It assesses various in the Index. dimensions of quality, including the availability of strong opioid analgesics (morphine and equivalents), monitoring standards in organisations and the availability such as psychosocial support for patients and their of services families. Community engagement The role of the community is important in palliative care, especially as volunteer are vital in the provision of care. In this category, we assess workers of and training for volunteer workers, and public awareness the availability care. palliative © The Economist Intelligence Unit Limited 2015 57

59 The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ 0-100; for any one that is, the maximum value in palliative environment) care (or “supply” 100 and the minimum becomes indicator 0, and the context of “demand” for palliative care. in between into appropriate are turned values This offers a unique opportunity to identify These like percentages. on that scale, scores where countries care and palliative change policy values are multiplied by their weights assigned pressing. is most development and added together to get the category scores. II in Appendix See the full methodology by its Then each category is multiplied score and sources of data used, for descriptions and then added weight together to get the assessment criteria. score. overall How was the Index constructed? are the sole responsibility The results of the Index as a baseline, the 2010 version of the Index Using of the EIU. we first conducted an in-depth review of care in the past five developments in palliative What are the limitations of the Index? years. advisory We also consulted with our expert The Index assesses the quality and availability of included: which panel, palliative care services for adults only. Palliative is equally care for children important, but a Hospice Asia Pacific chair, Goh, • Cynthia paucity of data makes such analysis difficult. Palliative Care Network • Stephen Connor, senior fellow, Worldwide we faced of indicators, In terms data limitations Hospice Care Alliance Palliative and in our assessments around human resources Resources of services. availability In the Human • Liliana de Lima, executive director, ideally category, we would have considered for Hospice Association International and of doctors the availability working and nurses Palliative Care primarily care. Such data, in palliative however, • Emmanuel executive director, African Luyirika, is not widely available. Instead, data on we used Care Association Palliative collected total by and nurses number of doctors the World Health Organization. • Sheila emeritus Payne, professor at the International Observatory on End of Life Care at In the Palliative and Healthcare Environment University Lancaster palliative to deliver data for “Capacity category, of for a number was not available care services” we reviewed In collecting data for the Index, measures the As a proxy, countries. this indicator plans, policies and academic papers for each percentage of people who died from palliative interviews and conducted country, with in- deaths care-related in a country in one year that medical professionals and country professors, care, would have be able to receive palliative helped Our interviews triangulate experts. other resources. existing the country’s We use given research. from desk-based information derived of the capacity of palliative an estimation care on WHPCA data, and based available, services and quantitative consists The Index of qualitative in a given of deaths year. divide by the number our EIU indicators. For qualitative indicators, to score a framework developed team research we scored indicators, For qualitative countries countries, usually on a scale of 1-5 (where 1=worst plans based on policies, and developments We then consulted our expert and 5=best). up until December 2014. This meant that new for indicators on weights and panel advisory in 2015 where as in Canada, (such developments findings. categories, as well as to review Index recently were policies nationwide implemented) of on scale are normalised Data for indicators © The Economist Intelligence Unit Limited 2015 58

60 The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ indicators, are not considered. For quantitative How should the Index be used? not available. We referred data for 2014 was often of Death The Quality by the constructed Index, data was available year where recent to the most care experts, EIU with the help of palliative is for most countries. It is meant to be used as a framework in a tool. identifying palliative care issues at the national for the Index in this paper reported The scores to level, with the opportunity for countries on the weights and indicator for each are based compare provision with countries in the same by the EIU at the conclusion category assigned region groups. It can also be used or income due consideration after of its research, of the for palliative demand can to assess which care, evidence and expert opinions given throughout quality planning support of future and affordable these However, weightings the research process. palliative care. on relative a final judgement are not necessary importance. indicator results The headline in are presented of the Index and in an accompanying infographic, this paper we In our analysis of demand for palliative care, are available while detailed in profiles country estimated relative burden of disease by collecting . A version a separate of the workbook appendix data on numbers of deaths in 2012 (latest in MS Excel at online for download is available figures) identified by available for 12 diseases www.qualityofdeath.org . includes This workbook Global Atlas of Palliative Care at the End of Life can examine the users tools: of analytical a range (2014). Data for prevalence of diseases would and weaknesses strengths of a particular country, measure, was but such information be a better while any two countries may be compared by disease Mortality available. not uniformly directly and individual indicators can be isolated information from medical is derived on death new the EIU has created Where and examined. and coding certificates of causes the following qualitative scoring, datasets through internal, system. The reliability WHO-ICD of data collected users in for the scoring can see the justification death can vary as a result of errors when issuing of the workbook. section the commentary Users and coding with diagnosis problems certificates, to each may also change the weights assigned of cause of death. indicator and category. © The Economist Intelligence Unit Limited 2015 59

61 The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology Appendix II: Quality of Death Index Methodology Index of Death The Quality consists initial population and economic size criteria (eg of two a to ensure and Zimbabwe) Malawi Botswana, separate rankings: regional representation. fairer the overall ranking care: of palliative • Supply environment care provision—the of palliative in The final selection consists of 18 countries availability, and quality of palliative affordability 17 in the Americas, East, and the Middle Africa care Of the 80 and 27 in Europe. 18 in Asia-Pacific • Demand burden ranking care: for palliative of countries included, 21 are low income, 24 are of as a reflection and ageing diseases in countries middle income and 35 are high income, according palliative care need (in which by the World used to definitions Bank countries are those that had 2013 GNI low income Country selection 74 of less than US$4,125 per capita income , middle in the Index, we the 80 countries To select but less than than US$4,125 more countries started in the with groupings Global Atlas of and high income more than US$12,746 countries Palliative Care published by the Worldwide Our Index represents approximately US$12,746.) Hospice Palliative Care Alliance (WHPCA). 85% of the world’s and 91% of the population 3a We selected countries classified as Level population 65. aged above of palliative provision with isolated (countries with generalised care), Level 3b (countries Overall score (“Supply”) of palliative care), Level 4a (countries provision ranking The Quality of Death Index overall integration) system health with preliminary assesses the availability, affordability and quality and 4b (countries health system with advanced care for adults of palliative in these countries. integration). countries scores 20 indicators The Index across grouped in five categories: Next, we removed countries with small • The Palliative and Healthcare Environment populations economies 2m) and small (under for our overall sets the context category nominal (under GDP in 2013), and, to US$10bn care provision. of palliative assessment ensure balanced geographical coverage, placed Indicators show in this category the broader limits on the number of countries we upper and palliative healthcare environment care several We also made region. in each included of as well as the availability environment, our countries where exceptions did not meet care services. palliative © The Economist Intelligence Unit Limited 2015 60

62 The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology possible, publicly Wherever 2014. December • The Human Resources category is a data from official for are used sources available reflection of trained medical of availability care indicator The qualitative the latest available year. professionals, as well as quality of training. We by publicly informed were scores available but care, in palliative not just specialists assess as government (such information policies medical in palliative care for general also training expert and reviews), and country interviews. practitioners. indicators Qualitative scored by The Economist Affordability of Care • The category ranks on an Intelligence Unit are often presented to the affordability of according countries of 1-5 (where scale integer 5=best). 1=worst, care services, with an emphasis on the palliative for palliative funding of government availability Indicator and then are normalised scores care. an overall to enable categories across aggregated Normalisation uses the function: comparison. the • The Quality of Care category assesses of standards, presence and practices guidelines Normalised x = (x - Min(x)) / (Max(x) - Min(x)) care. of palliative that provide high standards category Community Engagement • The are, respectively, where Min(x) the and Max(x) an of volunteers, assesses the availability lowest values and highest in the 80 countries for care provision, integral part of palliative and is then The normalised value indicator. any given public awareness of palliative care. on a scale number into a positive transformed of done for quantitative This was similarly 0-100. The indicators used fall into two broad indicators indicates a high value more where categories: affordable available, and high-quality palliative care provision. normalisation terms, (In simpler Quantitative indicators: • four of the Index’s takes the maximum value for any one indicator indicators data—for on quantitative are based 0, and turns it 100 and the minimum and makes healthcare of as a percentage spending example, on gradations into appropriate in between values per 1,000 GDP and number palliative- of doctors that scale.) deaths; care-related Qualitative indicators: 16 of the indicators • are Categories and weights assessments qualitative palliative of a country’s The EIU research assigned and category team for example, care environment, “Presence indicator weights with consultations after of government-led and effectiveness national palliative and external analysts care internal which palliative on is assessed care strategy” experts. The first three categories—Palliative national of 1-5, where a scale 1=no strategy and Healthcare Resources Environment, Human and well-defined exists and 5=a comprehensive, a allocated and Affordability of Care—are each exists. strategy national implemented weighting of 20% of the full index. The Quality of Care category 30%—making is weighted Data sources important it the most Community category. The Economist Intelligence Unit’s research team Engagement at 10% of the full index. is weighted to from July 2014 data for the Index collected © The Economist Intelligence Unit Limited 2015 61

63 The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology provides a brief of indicators, data and weights: table The following description Source Description Year Weight Indicator Unit Palliative and healthcare environment 20% 2012 World Health Healthcare spending 20% Government healthcare expenditure as a percentage of GDP % of GDP (WHO) Organization of 50% goals of vision, in terms of strategy EIU rating 2014 EIU analysis Presence and effectiveness Comprehensiveness palliative national and objectives; effectiveness of strategies in terms of government-led care mechanisms and presence of specific strategy implementation of regular and provision milestones review. strategy on national palliative 5= There is a comprehensive It has a clear and promotion. vision, care development targets, action plan and strong clearly defined mechanisms to achieve targets. In federated-structure in place there are strong and clearly defined strategies countries, that individual must follow. These mechanisms and states are regularly reviewed 1= There milestones and updated. care development is no government-led palliative and promotion strategy policy EIU rating Availability 2014 EIU analysis of research-based Presence of government-led/supported research and 10% funding for palliative care study and improvement. evaluation is a government-led (or government-supported) 5: There unit that regularly comprehensive research data collects quality of the country’s care system. to monitor palliative is well-funded. involve surveys with The body Studies professionals, hospitals/hospices and patients. healthcare The findings influence palliative care strategy the country’s 1= There around collected and development. is no data palliative care system. There is no available the country’s funding for such research. There is no evidence-based change. Capacity to deliver care palliative % 2011 WHPCA, EIU analysis 20% Estimated capacity of palliative care services available (i.e. of specialised providers care, including those services of palliative and provide and in at home patients that admit services by the number divided in a given year. facilities) of deaths Human resources 20% of specialised palliative care with EIU rating 2014 EIU analysis 40% Availability of healthcare professionals Availability specialised training workers care. in palliative are sufficient palliative care 5= There specialised professionals, comprising of doctors, nurses, social workers etc. Voluntary workers psychologists, should have in a course of instruction for voluntary participated hospice The specialist palliative care training for workers. the core care team is accredited by national professional boards. 1= Doctors working outside palliative and nurses no knowledge of palliative There is no care have care. course schools on palliative care. compulsory in medical medical knowledge of palliative General EIU rating 2014 EIU analysis 30% Quality of basic and specialised medical training in palliative care for doctors and nurses. care 5= All doctors and nurses working within or outside palliative care have understanding of palliative care. a good care is a compulsory doctor during Palliative and course nurse in schools. Doctors and nurses also regularly training get professional training throughout their career. 1= no Doctors working outside palliative care have and nurses knowledge of palliative care. There is no compulsory course care. on palliative in medical schools © The Economist Intelligence Unit Limited 2015 62

64 The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology Year Source Weight Description Indicator Unit care workers EIU rating EIU analysis 10% Presence of professional body for certification of palliative Certification for palliative 2014 and nurses). care workers (doctors 1= There accrediting professional body is a national-level 0= There care workers. palliative is no national-level professional body accrediting palliative care workers. per 1,000 PC-related Number Per 1,000 in of doctors (doctors) 2012 WHO, EIU availability 10% Measure of human resource calculation PC-related hospitals/hospices as an indication of availability of deaths care service. deaths palliative per 1,000 PC-related Per 1,000 of nurses 2012 WHO, Number 10% Measure of human resource availability (nurses) in EIU calculation deaths of hospitals/hospices PC-related of availability as an indication deaths care service. palliative 20% Affordability of care funding for Availability of public EIU rating 2014 EIU analysis 50% Presence and effectiveness of government subsidies/ programmes care services. care palliative for palliative government subsidies or 5= There are extensive for individuals palliative care programmes accessing services. The qualification criteria are clear and the to access such funding is largely easy and smooth. process on how to access Information funding is widely such Effectiveness of programmes available. is routinely 1= There are no government monitored. and adequately for individuals accessing palliative care services. subsidies burden to patients for Financial use. of funding EIU rating 2014 EIU analysis 40% Reflection of effectiveness care services palliative 5= 80-100% of end of life care across hospitals, hospices, available home care etc. is funded by sources other than the patient. of end of life care is funded 1= 0-20% by sources other than the patient. National scheme coverage of pension pension/ EIU rating 2014 EIU analysis 10% Coverage of palliative care services in country’s care services insurance palliative scheme scheme pension/insurance adequately 3= The national care services. 1= The national pension/ covers palliative does not cover palliative care services. scheme insurance 30% Quality of care of accreditation 2014 and for standards EIU rating Presence EIU analysis 20% Presence and scope of monitoring for organisations palliative organisations delivering monitoring care; enforcement and standards mechanisms. review standards for palliative care exists. 0= National 1= National standards for palliative care does not exist. Availability of opioid painkillers EIU rating 2012, or equivalents. and morphine of morphine Availability International 30% Control Narcotics latest 5= Freely available and accessible, 1= Illegal EIU analysis available Board, year and support for of psychosocial for patients EIU rating 2014 Availability 15% Availability of psychosocial support EIU analysis and families families. patients support and used available 3= Psychosocial is widely care both for families and patients. 1= in palliative Psychosocial support is almost never available for families and patients. Presence (DNR) or not EIU rating 2014 EIU analysis 10% of Do Not Resuscitate DNR policy has a legal status Whether policy 2= Yes 1= No Shared decision-making EIU rating 2014 EIU analysis 15% Extent to which diagnostic and prognostic information is shared patient. with 5= Doctors and patients are partners in care. Patients are fully informed of their diagnosis and prognosis. 1= Doctors patients. with rarely share prognosis © The Economist Intelligence Unit Limited 2015 63

65 The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology Year Indicator Description Source Unit Weight surveys EIU rating 10% Use of patient outcome and satisfaction EIU analysis in the surveys Use of patient 2014 satisfaction improvement of service provision. satisfaction is widespread 5= There use of patient surveys based on government and their for patients families guidelines. and covers pain The survey is comprehensive coordination service management, of care and other nurses healthcare by doctors, provision and other These findings are regularly used to professional involved. of service quality 1= There is no use of improve and care. surveys. patient satisfaction Community engagement 10% awareness of palliative care EIU rating 2014 EIU analysis 70% Public awareness and information around of palliative care. Public has a strong understanding of 5= Public and awareness Readily available care services. palliative information on palliative care is available from government portals mechanisms. 1= Public no understanding and community of palliative and awareness is no care services. There portals on government information and community mechanisms on palliative care. of volunteer workers for EIU rating for the care of palliative Availability 2014 EIU analysis 30% Availability of volunteer workers care palliative care patients. are sufficient volunteer workers to meet the needs 5:There palliative volunteer workers of the country’s care system; in the care of patients and they receive regular are mostly in the care of patients. are very few training 1= There workers in palliative volunteer and they are care services, mostly not well-trained in the care of patients. Demand for palliative care Burden of disease calculation is also given country measuring its Intelligence Unit built on the a score Each The Economist is a composite need for palliative research conducted by the WHO in estimating This score care. the need country. care in each for palliative of three indicators: diseases that the following The WHO found Burden of disease: • the mortality rate of care at the end of life: palliative required diseases as most requiring identified by the WHO dementias, cancer, and other disease Alzheimer’s the care. We assume that the higher palliative diseases, cardiovascular cirrhosis of the liver, the greater the prevalence of mortality rate, diseases chronic obstructive pulmonary (COPD), for need a greater and therefore these diseases multiple failure, kidney HIV-Aids, diabetes, palliative care rheumatoid disease, Parkinson’s sclerosis, tuberculosis. and drug-resistant arthritis the proportion Old age dependency ratio: • of above aged 65 as a proportion of persons persons Intelligence Unit collected adult The Economist aged 15-64. A higher proportion indicates a (aged rates mortality of the above for each 15+) need greater there is a smaller group to because diseases for the latest available year (2012). carry the burden from an ageing population. Where mortality rates were not available, we made with similar on countries based estimations • rate of growth the annual Speed of ageing: and demographics. for rates income Mortality above (2015-30) of the population aged 65. A disease each of as a proportion collected were ageing a rapidly indicates proportion higher aged total for those deaths 15 in 2012. above population, and therefore greater need for palliative care. the pain prevalence rate to each We then applied © The Economist Intelligence Unit Limited 2015 64

66 The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology disease: 67% pulmonary obstructive Chronic and country. Pain prevalence disease rated are from the Global Atlas of Palliative Care at taken Diabetes: 64% the End of Life and are an authoritative means to HIV-Aids: 80% These measure estimate palliative care needs. 50% failure: Kidney disease degree of pain for each (but do not 43% Multiple sclerosis: consider length of suffering). Pain prevalence are as follows: rates 82% disease: Parkinson’s and other Alzheimer’s 47% dementias: disease 89% arthritis: Rheumatoid Cancer (malignant neoplasms): 84% Drug-resistant tuberculosis: 90% 67% Cardiovascular diseases: country’s Finally, to get each of disease burden of the liver: 34% Cirrhosis we added individual disease scores. score, the12 An illustration is as follows: Argentina Total of deaths (aged 15+) from all causes in 2012: 302,290 number Cancer Alzheimer’s Drug- Cirrhosis of the (malignant Cardiovascular Par k ins on’s Kidney Multiple Rheumatoid and other arthritis liver COPD Diabetes HI V/A ID S resistant TB failure sclerosis diseases disease neoplasms) dementias Disease 6,846.80 3,671.19 73,594.35 6,688.39 26,110.46 9,480.64 of deaths 66,373.80 111.04 1,183.40 295.42 206.99 Number 3,583.30 rate 47% 84% 67% 34% 67% 64% 80% 50% 43% 82% 89% 90% Pain prevalence of disease = (3,671/302,290)*47% + (66,373/302,290)*84% ... (206/302,290)*90% = 0.4644 for Argentina Burden Demand for palliative care indicators and weights Unit Year Source Weight Description Indicator Burden of disease Score 2012 WHO, EIU care diseases 60% Calculated as number of deaths by palliative calculation (list of 12 diseases by WHO), divided by total identified number in country, multiplied by pain prevalence of deaths rate. Old age dependency ratio % 2014 EIU, UN Population of 20% Percentage of persons aged over 65 as a proportion data working-aged individuals (15-64) above Speed of ageing % 2015- EIU analysis 20% Annual rate of growth of population of persons aged 2030 65, 2015-2030 © The Economist Intelligence Unit Limited 2015 65

67 The 2015 Quality of Death Index Ranking palliative care across the world Endnotes 1 In the words , Profile Books, 2014 of Atul Gawande; Being Mortal: Medicine and What Matters in the End 2 Definition Care, available at http://www.who.int/cancer/palliative/definition/en/ WHO of Palliative 3 average of the scores in the Index; it does not necessarily imply This relates with above- to the mathematical that countries scores satisfactory palliative care across provide considered in the Index average all factors 4 over 15, based on UN population estimates for 2015 Aged Taiwan, 2010 census data except 5 figures refer estimates Population to UN 2015 6 and World Worldwide Palliative Care Alliance , Health Organization, Global Atlas of Palliative Care at the End of Life Hospice January Available at http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf 2014. 7 Available and Health Ombudsman, Dying without dignity , Parliamentary Service at http://www.ombudsman.org. May 2015. uk/__data/assets/pdf_file/0019/32167/Dying_without_dignity_report.pdf 8 Smith et al, “Evidence on the cost and cost-effectiveness of palliative care: A literature review”, Palliative Medicine , vol. 28 no. 2, 130-150, February Abstract at http://pmj.sagepub.com/content/28/2/130 2014. 9 May et al, “Prospective Study of Hospital Palliative Care Teams for Inpatients With Advanced Cancer: Earlier Cohort 8th 2015. Is Associated Cost-Saving Effect”, Journal of Clinical Oncology , June Consultation Abstract available at With Larger http://jco.ascopubs.org/content/early/2015/06/08/JCO.2014.60.2334.abstract 10 Sleeman et al, “Research into end-of-life cancer care—investment is needed”, The Lancet , vol. 379 no. 9815, February 11th 2012. Available at http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60230-X/fulltext 11 Global Atlas of Palliative Care , op.cit. 12 See Taiwan case study 13 Asia-Pacific Hospice Palliative Care Network, “Japan—Palliative Care Becoming the Norm”, April 20th 2015. Available at http://aphn.org/japan-palliative-care-becoming-the-norm/ 14 Mary Kwang, “Developing Palliative Fronts”, Hospice Link , vol. 32 no. 4, Singapore Hospice Council, Care on Multiple at http://www.singaporehospice.org.sg/PDFs/2013/HL%204-2013-WEB.pdf December 2013. Available 15 Latin Association for Palliative Care, Atlas of palliative care in Latin America , cited in ehospice summary, January 7th American Available at http://www.ehospice.com/Default/tabid/10686/ArticleId/2470 2013. 16 et al, “Symptom and Palliative Care in Chile”, Journal of Pain and Palliative Care Pharmacotherapy , no. 17, Guerrero Control Available at http://cuidadospaliativos.org/archives/Symptom%20Control%20and%20Palliative.pdf 13-22, 2003. 17 of Palliative Santos Salas, “Understanding the Provision and Anna Care in the Context of Primary Health Cameron Brenda Qualitative research findings from a pilot study in a community setting Care: Journal of Palliative Care , vol. 25 no. 4, in Chile”, 275-283, Available at http://uofa.ualberta.ca/nursing/-/media/nursing/about/docs/cameronsantossalas.pdf 2009. 18 care in Mongolia”, & Palliative Care, “Development of palliative for Hospice IAHPC News , vol. 10 no. International Association 2009. Available 4, April at http://www.hospicecare.com/news/09/04/regional_reports.html 19 Davaasuren, by Love and Guided by Knowledge”, Ohio Health International Palliative Care Odontuya “My Life Inspired Leadership Development Initiative December 2013. Available at http://www.ipcrc.net/news/wp-content/uploads/2012/01/ , Odontuya-Davaasuren-Ulaanbaatar-Mongolia-December-2013_dp-f.pdf 20 Ministry Policies and Regulations, Notice on Medical Institution Department List, 2008. Available at http://www. of Health, The Ministry was dissolved in 2013 and its functions integrated moh.gov.cn/mohzcfgs/pgz/200804/18710.shtml. of Health Health Planning Commission. into the National and Family 21 Asia Pacific Journal of Health Management L. Peters, Zou, M., M. O’Connor, Care in Mainland China,” W. Jiejun, , “Palliative April 2013 22 Shanghai Municipal Commission of Health and Family Planning, “Notice on the implementation of the 2014 municipal project to add 1000 care beds,” 2014. Available at http://www.wsjsw.gov.cn/wsj/n429/n432/n1487/n1512/u1ai132927. palliative html 23 Xinhua,”Ten elderly support services subject to government procurement; hospice care included for the first time”, 2014. Available at http://www.tj.xinhuanet.com/tt/jcdd/2014-08/12/c_1112034687.htm 24 Zhao Han, “Children of party luminaries raise awareness for dying with dignity”, Caixin online , January 8th 2015. Available at http://english.caixin.com/2015-01-08/100772429.html © The Economist Intelligence Unit Limited 2015 66

68 The 2015 Quality of Death Index Ranking palliative care across the world 25 2.4 See note on Figure 26 See Mongolia case study 27 Association for Palliative Care website, “Colombia passes palliative care law”, November 26th EAPC Blog, European 2014. at https://eapcnet.wordpress.com/2014/11/26/colombia-passes-palliative-care-law/ Available 28 See Spain case study 29 See note on Figure 2.4 30 of Palliative Care, Atlas of Palliative Care in Europe 2013, Full Edition , Spain Country European Available at Association Report. http://www.eapcdevelopment-taskforce.eu/images/booksdocuments/AtlasEuropafulledition.pdf 31 et al, “Catalonia care demonstration project at 15 Years”, Journal of Pain and Symptom WHO palliative Gomez-Batiste Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17482052 vol. 33 no. 5, May 2007. Management , 32 2014. Town, Post-graduate Diploma in Palliative Medicine, Prospectus, Available at http://www. of Cape University publichealth.uct.ac.za/sites/default/files/image_tool/images/8/Information%20booklet%20PG%20Diploma%202014.pdf 33 “The Thogomelo USAID, Africa”, http://www.aidstar-one.com/task_orders/thogomelo_project Project, South 34 Da Costa”, care at the World Health Organization—Interview with Dr Gaspar palliative February ehospice, “Panama champions at http://www.ehospice.com/ArticleView/tabid/10686/ArticleId/8926/language/en-GB/View.aspx 10th 2014. Available 35 University 1954. Referenced in Pain & Policy Studies Group, 16th, of Wisconsin School of Medicine 23, February Law Number Health Carbone Cancer Center, Improving Global Opioid Availability for Pain & Palliative Care: A Guide to a Pilot and Public , Evaluation of National Policy Available at http://www.painpolicy.wisc.edu/sites/www.painpolicy.wisc.edu/ December 2013. files/Global%20evaluation%202013.pdf 36 See US case study 37 of Medicine, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life , September Institute Available at http://books.nap.edu/openbook.php?record_id=18748 2014. 38 , op.cit. Global Atlas of Palliative Care 39 Care Act: http://www.hhs.gov/healthcare/rights/law/ Affordable 40 Dying in America , op. cit. 41 Pam Belluck, for End-of-Life Talks Gaining Ground”, New York Times , August 30th 2014. Available at http://www. “Coverage nytimes.com/2014/08/31/health/end-of-life-talks-may-finally-overcome-politics.html 42 hours of care per day over the course of one week. “2.4m bed days lost in 5 years from social on three Age Based care delays,” 17th 2015, http://www.ageuk.org.uk/latest-news/bed-days-lost-social-care-delays/ UK, June 43 et al, “Impact of the Marie Curie Cancer Care Delivering Choice Programme in Somerset and North Somerset on place Purdy and hospital of death a retrospective cohort study,” BMJ Supportive & Palliative Care , March 2015. Abstract available at usage: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4345906/ 44 Improving in the United States?” Journal of Palliative Medicine , Teno et al, “Is Care for the Dying 2015. vol. 18 no. 8, April Abstract available at http://online.liebertpub.com/doi/abs/10.1089/jpm.2015.0039?journalCode=jpm 45 See box on P43 46 Narcotic and Psychotropic Substances (Amendment) Act, March 10th 2014. Available at http://www.indiacode.nic.in/ Drugs acts2014/16%20of%202014.pdf 47 Rights Watch, Unbearable Pain: India’s Obligation to Ensure Palliative Care , October 2009. Available at: http://www. Human hrw.org/sites/default/files/reports/health1009web.pdf 48 “Strengthening of palliative care as a component of comprehensive the life course”, Sixty-Seventh World care throughout Health Assembly, May 24th 2014. Available at http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf 49 “How hospice makes cheap liquid morphine”, Ugandan June 2nd 2014. Available at http://www.bbc.com/news/ BBC News, health-27664121 50 Atlas of Palliative Care in Latin America , “Regional Analysis”, International Association for Hospice and Palliative Care, 2012, p5. Available at http://cuidadospaliativos.org/uploads/2013/12/Atlas%20of%20Palliative%20Care%20in%20Latin%20 America.pdf 51 Available See for example the case study on Kerala in the 2010 EIU report. at http://graphics.eiu.com/upload/eb/ qualityofdeath.pdf © The Economist Intelligence Unit Limited 2015 67

69 The 2015 Quality of Death Index Ranking palliative care across the world 52 http://www.dyingmatters.org/overview/about-us 53 6th 2015. Strikes Patient Suicide”, New York Times , February Ban on Aiding Available at “Canada Ian Austen, Down Court http://www.nytimes.com/2015/02/07/world/americas/supreme-court-of-canada-overturns-bans-on-doctor-assisted- suicide.html 54 For poll results, see for example website, UK Parliament http://services.parliament.uk/bills/2014-15/assisteddying.html. http://www.populus.co.uk/wp-content/uploads/DIGNITY-IN-DYING-Populus-poll-March-2015-data-tables-with-full-party- crossbreaks.compressed.pdf 55 Oregon, Public Death With Dignity Act—2014”. Available at https://public.health.oregon.gov/ Health “Oregon’s ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf 56 Department of Health website, http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/ State Washington DeathwithDignityAct 57 Patients Rights Council, “Vermont”. http://www.patientsrightscouncil.org/site/vermont/ 58 of Lords, “Criminal Suicide House in Switzerland Hearing with the Select Committee on the Assisted Law and Assisted Dying Ill Bill,” February 3rd 2005. Available at http://www.rwi.uzh.ch/lehreforschung/alphabetisch/ for the Terminally schwarzenegger/publikationen/assisted-suicide-Switzerland.pdf 59 Council, http://www.patientsrightscouncil.org/site/belgium/ Patients “Belgium”. Rights 60 Council, Patients Euthanasia Law”. http://www.patientsrightscouncil.org/site/hollands-euthanasia-law/ Rights “Holland’s 61 of the Netherlands website: http://www.government.nl/issues/euthanasia/euthanasia-assisted-suicide-and- Government non-resuscitation-on-request 62 Being Mortal op.cit. , 63 Public Health Oregon, op.cit. 64 Taiwan Promotion Administration, 2013 Annual Report , p103-105. Available at http://www.hpa.gov.tw/BHPNet/Web/ Health Easy/FormCenterShow.aspx?No=201401140001 65 See appendix for full methodology 66 Health World Health Organization, Statistics database, “Disease and injury regional mortality estimates, 2000–2012”. Available at http://www.who.int/healthinfo/global_burden_disease/estimates/en/index1.html 67 2012. A Celebration and A Challenge”, United Nations Population Fund, Century: Available at “Ageing in the Twenty-First http://www.unfpa.org/sites/default/files/pub-pdf/Ageing%20report.pdf 68 Health Organization, Health statistics database, “Projections of mortality and causes World 2015 and 2030”. of death, Available at http://www.who.int/healthinfo/global_burden_disease/projections/en/ 69 , Care for Patients with Metastic Non-Small-Cell Lung Cancer”, “Early Palliative August 19th New England Journal of Medicine 2010. Available at http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678 70 “An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled The Lancet , vol. 2, no. 12, p979–987, December 2014. Available at http://www.thelancet.com/ trial”, journals/lanres/article/PIIS2213-2600(14)70226-7/abstract 71 Global Atlas of Palliative Care , op.cit. 72 European of Palliative Care, Atlas of Palliative Care in Europe 2013 . Available at http://www.eapcdevelopment- Association taskforce.eu/images/booksdocuments/AtlasEuropafulledition.pdf 73 International for Hospice and Palliative Care, Atlas of Palliative Care in Latin America Association Available at http:// . cuidadospaliativos.org/uploads/2013/12/Atlas%20of%20Palliative%20Care%20in%20Latin%20America.pdf 74 US$1,045 The World defines countries with GNI per capita between Bank and US$4,125 as lower-middle income countries. In in one low-income bracket. the Index, we have combined the World Bank’s low income and lower-middle income countries © The Economist Intelligence Unit Limited 2015 68

70 While every effort has been taken to verify the accuracy of this information, The Economist Intelligence Unit Ltd. cannot accept any responsibility or liability for reliance by any person on this report or any of the information, opinions or conclusions set out in this report. Cover image - Dan Page

71 LONDON 20 Cabot Square London E14 4QW United Kingdom Tel: (44.20) 7576 8000 Fax: (44.20) 7576 8500 E-mail: [email protected] NEW YORK 750 Third Avenue 5th Floor New York, NY 10017, US Tel: (1.212) 554 0600 Fax: (1.212) 586 0248 E-mail: [email protected] HONG KONG 1301 Cityplaza Four 12 Taikoo Wan Road Taikoo Shing Hong Kong Tel: (852) 2585 3888 Fax: (852) 2802 7638 E-mail: [email protected] GENEVA Rue de l’Athénée 32 1206 Geneva Switzerland Tel: (41) 22 566 2470 Fax: (41) 22 346 9347 E-mail: [email protected]

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