The reality of end of life care for LGBT people

Transcript

1 “Hiding who I am” The reality of end of life care for LGBT people In partnership with

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3 Contents Hiding who I am – the reality of end of life care for LGBT people Contents Foreword - Sandi Toksvig OBE 4 6 Introduction What is palliative care? 7 What is end of life care? 7 What is person-centred care? 7 Who do we mean by LGBT people? 8 What do we know about the experiences 11 of LGBT people at the end of life? Research on access to palliative care for LGBT people 11 UK policy context 12 Addressing the research gap 14 How many people are affected? 14 What are the issues? 17 1. Anticipating discrimination 18 2. Complexities of religion 23 and LGBT end of life care 3. Assumptions about identity and family structure 23 26 4. Varied support networks Unsupported grief and bereavement 29 5. 6. Increased pressure on LGBT carers 30 Attitudes towards end of life care 33 for LGBT people at Marie Curie Conclusions 35 What does good care for LGBT people look like? 35 Our commitment 37 Recommendations 37 Final words 38 39 References 3

4 Hiding who I am – the reality of end of life care for LGBT people Foreword Foreword Discrimination has no place in the The UK has made many great strides NHS or social care services, but it is towards equality for LGBT people. especially unwelcome when someone For many of us who grew up in a time is at the end of life. This is a time when when being LGBT held a heavy stigma people should be able to be who they and could lead to exclusion, violence, are, with the people that mean the and even arrest, ‘coming out’ to health most to them in their life. and social care professionals is not an Prejudice and discrimination at the easy thing. Trans people in particular end of life have a devastating impact can find the prospect of finding a on LGBT people. At its very worst, it health and social care professional means someone will spend their last who respects their gender identity days feeling isolated, alone, angry and particularly daunting. unwelcome. For those who lose a loved For this reason, many older – and one, not being able to say goodbye in some younger – LGBT people delay a respectful and peaceful environment accessing social care services, even can make grief and bereavement that when they have a terminal illness and much harder to bear. are at their very sickest. 4

5 Foreword Hiding who I am – the reality of end of life care for LGBT people I am so pleased to be able to Our NHS is committed to respecting endorse this report and Marie Curie’s people’s differences and so are commitment to improving the care providers of palliative care like Marie that the charity and others provide Curie and other hospice services. to LGBT people and their loved ones. But this report and others show I hope that in the coming years the that LGBT people still worry about hospice and palliative sector as a whole experiencing discrimination from will transform the care it delivers for health and social care staff and often LGBT people and set an example for do also experience it. other parts of the health service. Many health and social care Everybody, regardless of who they are professionals say that they treat or their personal circumstances, has a everyone the same. This is well- right to high-quality care. intentioned. However, as this report shows, sometimes for everyone to be equal, differences need to be acknowledged and given space to be celebrated. There is still a lot of work that needs to be done to make this a reality for all LGBT people at the end of life. Sandi Toksvig OBE 5

6 Hiding who I am – the reality of end of life care for LGBT people Introduction Introduction they choose to have around them. Everyone should have the right to Service providers and health and social high-quality palliative care when they care professionals can do significant have a terminal illness, regardless of and long-lasting damage to people by their condition, where they live, or their being insensitive or actively hostile to personal circumstances. The UK has people’s sexuality or gender identity been ranked as the best country in the at this time. world for the quality of palliative care on offer here. However, access to this Not all the stories in this report are of care is patchy. One in four people who bad care. There are some examples need palliative care miss out each year. where people get it right. But these tend to be in the minority. As is often LGBT people experience significant the case in palliative and end of life barriers to getting palliative care when care, the question is how to take they need it. This report explores why. pockets of good practice and make It shows that many older LGBT people them universal across the health and have significant fears about palliative social care system. This must happen and end of life care services. They are sooner rather than later – as our concerned that service providers and population ages and the overall need health and social care professionals will for palliative care grows, there will also be indifferent to their sexuality be rising expectations among LGBT and gender identity, or, at worst, people of person-centred care that actively hostile. They worry that acknowledges and supports them in palliative and end of life care services their last months, weeks and days. are simply ‘not for them’, or that they Marie Curie is dedicated to making sure will receive worse treatment than their that LGBT people who have a terminal straight peers. illness experience the best palliative These fears are not unwarranted. and end of life care possible, alongside This report highlights real barriers the family they choose to have that LGBT people have experienced in around them. trying to access high-quality palliative This means a commitment going and end of life care. These range from forward to deliver person-centred care outright discrimination, such as a of the highest quality for LGBT people. doctor who would not treat a lesbian We want everyone who receives our woman without a chaperone, to more care to feel safe and have the best commonplace, but no less damaging possible experience. Palliative care is issues, such as the experience of for everyone. having to come out to each new healthcare professional encountered. Some of the names of the case studies used in this report have been changed The end of someone’s life is a time of to protect the identities of those sharing significant vulnerability, both for the their personal stories. person who is dying and the family 6

7 Introduction Hiding who I am – the reality of end of life care for LGBT people What is end What is of life care? palliative care? End of life care is an important part Palliative care is for people living with of palliative care for people who are a terminal illness where a cure is no nearing the end of their life. It’s for longer possible. It’s also for people who people who are considered to be in the have a complex illness and need their last year of life, but this time frame can symptoms controlled. Although these be difficult to predict. people usually have an advanced, progressive condition, this isn’t always End of life care helps people live as well the case. as possible and to die with dignity, and can include additional support, such as Palliative care treats or manages pain help with legal matters. End of life care and other physical symptoms. It also 2 continues for as long as it is needed helps with any psychological, social or . spiritual needs. What is person- It can be delivered alongside particular treatments, such as chemotherapy centred care? or radiotherapy. Palliative care helps Person-centred care is a concept used people with advanced or terminal by NHS England and other health and illnesses have the best possible quality social care organisations around the of life. This also includes support for UK. In this report, we use the definition their families. adopted by NHS England, which was Specialist palliative care is typically developed by National Voices with delivered by a team with diverse patients and service users: expertise in caring for people with 1 “I can plan my care with people progressive and life-limiting illness . who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important 3 .” to me 7

8 Hiding who I am – the reality of end of life care for LGBT people Introduction Tr a n s : A simple definition is someone Who do we mean by whose gender differs from the one LGBT people? they were given when they were born. Trans people may identify as male or The abbreviation LGBT covers a female, or they may feel that neither diverse group, with very different label fits them. experiences and needs. Understanding the distinctions Trans people may transition, or between people who identify as change, from the gender they were LGBT is vital to understanding given at birth. They may change their their end of life experiences. names, the pronouns they prefer to be addressed or described by or their style For the purposes of the report we will of dress. use the following definitions: Some trans people also choose a LG B T: lesbian, gay, bisexual, trans. medical transition, with the help of A woman whose Lesbian: medical specialists who will prescribe sexual and emotional attraction 5 hormones and/or surgery . is towards women. Gender identity: The sense of A man whose sexual and Gay: being male, female, non-binary, emotional attraction is towards men. agender, genderfluid, genderqueer Bisexual: Bisexuality generally refers and others. For some people, gender to having attraction to more than identity is in accord with physical one gender. It is a broad umbrella anatomy; this is known as being term which may include the following cisgender. For trans people, however, groups and more: gender identity may differ from • People who see themselves as physical anatomy or expected social attracted to both men and women. roles. It is important to note that gender identity, biological sex, and • People who are mostly attracted to sexual orientation are separate and one gender but recognise that this is that one cannot assume how someone not exclusive. identifies in one category based on • People who experience their sexual 6 how they identify in another category . identities as fluid and changeable over time. Families of choice: In this report, • People who see their attraction we also refer to the families of as ‘regardless of gender’ (other choice of people who are LGBT and aspects of people are more the important role they can play important in determining who throughout care. For the purposes of they are attracted to). this report, we are defining these as • People who dispute the idea that chosen, rather than fixed, relationships 7 there are only two genders and that and ties of intimacy, care and support . people are attracted to one, the 4 other, or both . 8

9 Introduction Hiding who I am – the reality of end of life care for LGBT people Other abbreviations: As well as the Marie Curie recognises that, widely used abbreviation LGBT, there regardless of sexual orientation, are other abbreviations, acronyms gender, relationship or family status, and groups used by both academics everyone’s needs and preferences at and thought leaders, as well as LGBT the end of life will be unique. While people themselves. These include we are discussing LGBT people’s but are not limited to: LGBTQQIAA needs and experiences in this (Lesbian, Gay, Bi, Trans, Queer, report, it is important to recognise Questioning, Intersex, Asexual, Allies), that not all LGBT people will have LGBTQI (Lesbian, Gay, Bi, Trans, Queer, the same needs and experiences Questioning, Intersex ) and GSRD/M at the end of their lives. (Gender, Sexuality and Romantic/ Relationship Diversity/Minority – a non-hierarchical term that also includes relationship diversities such as non-monogamy and polyamory). 9

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11 Hiding who I am – the reality of end of life care for LGBT people What do we know about the experiences of LGBT people at the end of life? What do we know about the experiences of LGBT people at the end of life? neurone disease can be extremely Research on access different from someone affected to palliative care for by dementia. • the issues faced by bisexual and LGBT people trans people at the end of life Marie Curie is committed to ensuring Bisexual people and trans people that everyone with a terminal illness is face different kinds of prejudice able to access high-quality palliative and discrimination to gay men care, regardless of where they live, and lesbian women, and this may their diagnosis, or their personal sometimes come from within the circumstances. In 2014, the charity LGBT community itself. commissioned the London School of More recently, a 2016 systematic Economics and Political Science (LSE) 10 review , looking at evidence around to undertake research into who was the bereavement experience of missing out on palliative care in the UK partners of LGBT people, identified and why. 13 relevant studies. All of them The report by the LSE, Equity in provision highlighted additional barriers faced 8 of palliative care in the UK (April 2015) , by bereaved LGBT people, beyond the found a startling lack of evidence universal pain experienced after losing about LGBT people’s experiences of a partner. palliative and end of life care. The LSE identified just one systematic review, from 2012, which highlighted 9 12 relevant papers . Most of these papers focused on the experience of gay men and lesbian women with cancer, leaving some significant gaps around: the experiences of LGBT people • living with and dying from diseases other than cancer. Different diseases can result in a range of experiences for people at the end of their life; for example, the experiences of someone with motor 11

12 What do we know about the experiences of LGBT people at the end of life? Hiding who I am – the reality of end of life care for LGBT people Despite the wealth of policy UK policy context documents on access to palliative care While the research available on the for LGBT people, providers of care have experience of LGBT people at the end been slow to make changes that would of life is sparse, policymakers have make their services more accessible for begun to understand that LGBT people LGBT people and their families. do experience additional barriers to In May 2016, the Care Quality receiving high-quality palliative and Commission (CQC) published a end of life care. thematic review into Equalities at the End of Life . The review found that England commissioners and providers do not In England, there have been numerous always have a good understanding of policy reports noting the barriers that the end of life care needs of different LGBT people experience at the end of groups in their community. Many life, and urging action: commissioners said that sexual English End of Life Care • In 2008, the orientation had no bearing on access 11 Strategy Quality Impact Assessment to end of life care and there was noted that, in terms of access to limited evidence of services engaging quality palliative and end of life care, proactively with LGBT people or LGBT people were at the most risk of considering their specific needs. The experiencing discrimination. review found that, as a result of this, • In 2011, the National Council for appropriate services which meet Palliative Care produced Open to people’s individual needs and All? Meeting the Needs of Lesbian, Gay, address barriers to access are Bisexual and Transgender People Nearing not always available. 12 the End of Life , a report based on The CQC found evidence that some a survey of service providers and people’s previous experiences of users. It found that LGBT people were discrimination meant that they were concerned that palliative and concerned they would not be treated end of life care services were not with dignity and respect by health open to them and they might and care services, or that their experience discrimination. partners may not be involved in the • In 2012, the National End of Life Care way they wish. In response to an The Route to Programme published information request, only 24% of Success in End of Life Care – Achieving clinical commissioning groups said Quality for Lesbian, Gay, Bisexual they had undertaken an equality , a guide and Transgender People impact assessment for end of life care for providers and practitioners of services they had commissioned to 13 palliative and end of life care . consider the impact for groups with 14 a protected characteristic . 12

13 Hiding who I am – the reality of end of life care for LGBT people What do we know about the experiences of LGBT people at the end of life? However, like the rest of the UK, Scotland there is still a paucity of data around In Scotland, there have been strong the level of need for palliative care commitments from the Scottish amongst LGBT people in Scotland and Government. Most recently, the the amount of LGBT people missing Equality Impact Assessment for the out on palliative care altogether. Strategic Framework for Action on 15 Palliative and End of Life Care shows Wales an acknowledgement that more In Wales, the Together for Health – needs to be done for LGBT people 18 Deliver End of Life Care delivery at the end of life: plan has no reference to the needs • The Scottish Strategic Framework of LGBT people at the end of life. for Action on Palliative and End of This strategy is due to be refreshed 16 Life Care makes a specific reference in 2016. to the difficulties facing LGBT communities in accessing palliative Northern Ireland care and commits to ensuring that The Northern Ireland strategy Living everyone who needs palliative care 19 Matters, Dying Matters does not has access to it by 2021. address palliative care needs for • The Equality Impact Assessment LGBT people. 17 of the framework also sets out that there is a need for “further and specific research required” on the “population, and the palliative care needs, of patients who are lesbian, gay, bisexual, transgender or intersex” (LGBTI). • The impact assessment also calls for a “specific and focused education of health and care professionals to enhance their awareness of the concerns of people who are LGBTI about the possibility of discrimination, heterosexist assumptions and to recognise the importance of partners in decision making in respect of palliative and end of life care”. 13

14 Hiding who I am – the reality of end of life care for LGBT people What do we know about the experiences of LGBT people at the end of life? The interviews will be used to Addressing the inform resources for LGB and/or T research gap communities and organisations as well as for the training of Marie Curie runs the largest palliative healthcare professionals. care research programme in the UK. In 2010, we recognised that there was Colleagues at the University of a gap in research on the experiences Nottingham and King’s College of LGBT people at the end of life. London have agreed to share some of their findings and provided case In response, we funded research by studies for this report. the University of Nottingham, The 20 Last Outing , to look in detail at the particular needs of LGBT people at How many people the end of life. It also explored older are affected? LGBT people’s familial and friendship networks and how these personal The Integrated Household Survey networks may influence experiences 2013 estimates that about 1.6% towards and at the end of life. This of the population in the UK is project was the first of its kind across lesbian, gay or bisexual, though the 21 the UK . Treasury estimates that 6% of the UK population identifies as lesbian, In May 2014, Marie Curie also funded gay or bisexual. Understanding the a joint project led by King’s College proportion of the population who London, with the University of identify as trans is more difficult. Nottingham and the Gay Men’s Health The Gender Identity Research and Charity (GMFA), to improve demand Education Society (GIRES) estimates for and supply of palliative care for LGB the overall percentage of ‘gender and/or T people who are in the later variant’ people in the UK is 1%. stages of a life-limiting illness. 22 In 2014, 11.4 million people were The ACCESSCare project involves 23 estimated to be over the age of 65 . in-depth interviews with LGBT This means there are around 684,000 people who are in the later stages of LGB people and 114,000 trans people a life-limiting illness, their informal over the age of 65 (some trans people caregivers (partners, friends or might, however, also identify as either relatives), and bereaved caregivers of lesbian, gay, or bisexual). people who died a predictable death from a progressive illness or condition. 14

15 What do we know about the experiences of LGBT people at the end of life? Hiding who I am – the reality of end of life care for LGBT people Around 572,000 people die annually across the UK at present. This means that just over 34,000 LGB people and around 6,000 trans people die each year. However, we know that annual deaths are set to increase by 100,000 over 24 the next 25 years and demand for high-quality palliative care services from LGBT people will grow alongside that of the wider population. In fact, the research suggests that LGBT people have a higher incidence of life-limiting and life-threatening disease than people who are not LGBT. The risk of smoking and alcohol abuse is higher among LGBT people, and is attributed to stress from homophobia, discrimination and marginalisation. However, findings from Stonewall and referenced in The Last Outing suggest that older LGB people are not confident in public services’ abilities to 25 meet their needs . In a recent survey of 522 lesbian, gay or bisexual adults in the UK, 34% expressed concerns about 26 arranging end of life care . 15

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17 Hiding who I am – the reality of end of life care for LGBT people What are the issues? What are the issues? people can also feel concerned Looking at the existing policy and that their loved ones will not be research papers as well as case studies respected and recognised as next The Last Outing from and ACCESSCare, of kin. we identified a number of key issues experienced by LGBT people at the Unsupported grief and 5. end of life: bereavement: Partners feel isolated or unsupported during bereavement 1. Anticipating discrimination: because of their sexuality. People access palliative care services late or not at all, either because they Increased pressure on 6. anticipate stigma or discrimination LGBT carers: There is increased or they think the service is not for pressure on informal carers, 27 them . Stonewall reports that because people are accessing three in five older gay people are palliative and end of life care not confident that social care and services late or not at all. support services will be able to LGBT people may also experience 28 understand and meet their needs . barriers to palliative care because Complexities of religion and 2. they are: Anecdotal LGBT end of life care: • three times more likely to be single evidence suggests that palliative • less likely to have children and end of life care services may not • far more likely to be estranged from always ensure LGBT patients and their birth families (though many their families have the same spiritual LGBT people will have alternative needs addressed at end of life as any family structures in place) other patient. • significantly more likely to 3. Assumptions about identity experience damaging mental Health and family structure: 30 health problems and social care staff often make These factors are likely to lower the assumptions about people’s chances of stable, ongoing informal sexuality or gender identity that care for some LGBT people. Informal have an impact on their experience care, particularly from a partner, plays of palliative and end of life care. a vital role in ensuring someone gets Evidence suggests that some access to palliative care. clinicians do discriminate on the 29 basis of sexual orientation . However, further research is needed Varied support networks: LGBT 4. on how being single influences access people at the end of life may choose to health and social care services at to be surrounded by close friends the end of life, and on how adaptable and support groups which represent hospice and palliative care services are constructed support networks to alternative family structures. alongside biological ones. LGBT 17

18 Hiding who I am – the reality of end of life care for LGBT people What are the issues? to and relationships with a whole 1. Anticipating range of services, including health discrimination and social care. People approaching the end of life According to a recent study by the UK are among the most vulnerable in our Parliamentary Women and Equalities communities. This vulnerability can be Committee on Transgender Equality, made worse if people fear that services trans people face significant difficulties might not understand their needs when accessing general NHS services, related to their sexual orientation or citing a “lack of understanding and gender identity. These fears are based lack of cultural competency around 33 on real experiences. trans issues” in the NHS . Older LGBT people have lived through This group can face different times when identifying openly as barriers to those experienced by lesbian, gay, bisexual or trans could other LGBT groups, such as a lack of mean, for example, being arrested, understanding over the process and being defined as mentally ill and in implications of being trans and how need of treatment, or losing one’s job, this may affect their daily lives and family or children. the care they receive. Lesbian, gay, bisexual and trans people In some cases, this group can be do not all experience the same kinds revealed by their physicality, which of discrimination. The NHS England presents different issues for both guide on ensuring the route to success patients and staff in how to identify in end of life care for LGBT people specific needs and support, such as notes that people who identify as trans different levels of privacy and how to or bisexual may have vastly different refer to the person in both public and experiences and issues to those who private settings. 31 identify as gay or lesbian . Changes in legislation There is also a notable lack of and attitudes understanding and knowledge about The UK has made considerable bisexual people’s relationships. progress in ensuring equality for LGBT This could lead to an even greater people, with the Civil Partnership Act gap in addressing the needs of this 2004, Gender Recognition Act 2004, community and creating services and Marriage (Same-Sex Couples) Act which are able to support their 2013 in England and Wales. However, particular life experiences. the latter Act has not restored the Bisexual men and women can also marriages of trans people whose often encounter discrimination within marriages were forcibly annulled as lesbian and gay support networks and a precondition of seeking a gender 32 communities which will clearly recognition certificate. Scotland have an impact on their approach similarly legalised same-sex marriage in 2014. 18

19 What are the issues? Hiding who I am – the reality of end of life care for LGBT people • 57% of health and social care Attitudes have also changed. In practitioners said they didn’t consider 2015, 60% of British people said they someone’s sexual orientation to be supported same-sex marriage, up 34 relevant to a person’s health needs. from 47% in 2007 . In 1983, 50% of British people said that sexual relations 24% of patient-facing staff had • between two people of the same sex heard colleagues making negative 35 were always wrong . remarks about lesbian, gay and bisexual people, using terms like The reality of discrimination ‘poof ’ or ‘dyke’. Despite legislative shifts and changes • 20% had heard disparaging remarks in attitudes, LGBT people are still about trans people. highly likely to experience violence • 10% had witnessed a colleague or abuse because of their sexuality or advocating the belief that someone gender identity. can be cured of being lesbian, gay 39 or bisexual . Research by Stonewall found that found that 26% The Last Outing • between 2010 and 2013, one in six LGB of survey respondents had people experienced a homophobic 36 experienced discrimination relating hate crime and the charity Galop to sexual orientation and/or gender estimates that three quarters of trans identity from health and social people are the target of transphobic 40 37 care professionals . abuse each year . A recent thematic review by the Care Three quarters of the people Stonewall Quality Commission found that some surveyed did not report what had people’s experience of discrimination happened to them to the police, with in their day-to-day life mean they one in 14 saying they were concerned are concerned that they may not be about further homophobia from the treated with dignity and respect by people they would report the crime to. health and care services at the end of The British Crime Survey found that life, or that their partners may not be 57% of all hate crimes are not reported 41 38 involved in the way they wish . to the police . Research from the University of In health and social care services, Nottingham also identified that LGBT discrimination against LGBT people people who are comfortable with by staff is also very real, and LGBT their sexuality and gender identity, staff can face discrimination from and are not generally worried about colleagues and their patients. being discriminated against, may In 2015, Stonewall conducted nevertheless worry about being research with YouGov into health discriminated against when they and social care professionals’ attitudes are at the end of their life and towards LGBT people – both patients more vulnerable. and colleagues: 19

20 What are the issues? Hiding who I am – the reality of end of life care for LGBT people The research suggests that these What is the impact of factors are leading LGBT people to anticipated discrimination? 43 delay access to services . The benefits In 2010, research for the Equality and of early access to palliative care are Human Rights Commission suggested well-established, particularly for that some older LGB people were people with terminal cancer, where delaying access to social care services earlier involvement of palliative care for as long as possible out of fear of 42 services can: discrimination , but said this was an 44, 45 • improve quality and length of life area that needed further research. • result in fewer hospital admissions Interviews for the ACCESSCare project and reduce the likelihood of dying also revealed evidence of anxiety 46 in hospital about care delivered in the home; in • help family carers to have lower levels particular, individuals faced constant 47 of anxiety and depression fear associated with disclosure of their identity, and how that would be If LGBT people are delaying or refusing responded to. access to health and social care support at home at the end of life, it For LGBT people this situation – as well may also mean that they are relying as every contact with a new health and heavily on family and friends to provide social care professional – represents informal care. While care provided another coming out, which brings by family and friends is a vital part of with it anxiety about the reaction of palliative and end of life care, informal the health and social care professional care without adequate support from and whether this will impact on the health and social care professionals care they receive. This kind of anxiety can put immense strain on people. in itself has a negative impact on the Eighty-two per cent of carers say that experience of care at the end of life caring has a negative impact on their insofar as it diminishes the wellbeing health and 55% say their caring role of the dying person and their family 48 has contributed to depression . and friends. We know this kind of anxiety is What people say they need not limited to care at home. Some Sixty per cent of survey respondents to survey The Last Outing respondents to The Last Outing survey said they would also said that health and social care prefer health and social care services settings like hospices, care homes, and that were specifically for LGBT people, hospitals do not represent safe spaces while 63% said they would like to be to disclose important aspects of their able to access health and social care identity, or to demonstrate affection services run by LGBT people. towards their partner at a time when However, many were wary of they may feel more vulnerable. segregation. They said that including images of LGBT people or LGBT symbols such as the rainbow flag 20

21 What are the issues? Hiding who I am – the reality of end of life care for LGBT people in promotional materials would When there were incidents where make them more comfortable using that didn’t happen, well, I suppose we palliative care services. This echoes were a bit taken aback. There were report, the findings of the Open to all? two main incidents that I remember which had a key recommendation for and actually I didn’t challenge either providers on the inclusion of LGBT of them at the time. I’ve spent my life imagery in promotional materials. challenging homophobia! But when Under-representation or invisibility you are as weak as a kitten it is hard. of LGBT people in the language and images used in service leaflets or One of the staff was talking me posters can add to LGBT people through what I was to expect of feeling unacknowledged or invisible. the cancer treatment. She looked This fuels unhelpful perceptions – for very uncomfortable, when Fran example, that hospice care is for white, was with me and I introduced her middle-class families. as my partner, and she couldn’t If LGBT people are not confident about help referring to her as my friend. I services or staff, they may not seek said, no, she’s my partner. And she support and/or may not feel able to be just couldn’t kind of get that, but I open about themselves and the people wasn’t in the right frame of mind to who are important to them – factors that are crucial to dying well. challenge her there and then. Then another time, Fran had gone Sheila has a diagnosis of for a drink and the doctor with me cervical cancer and was was asking intimate questions; I receiving palliative care when know she needed to, but anyway we interviewed her. Overall she some of her questions weren’t felt her treatment had been relevant. I said I was lesbian and exemplary and she had nothing she’ d seen Fran leave, so I said that but praise for staff: woman with me, she’s my partner. “I’ d expect nothing less. And my Well, this doctor, a female doctor, partner Fran and I have spent our stood outside the door saying, ‘I lives fighting discrimination, working need a chaperone’. I’m lying there, in the voluntary sector. Fran is a really ill and thinking: what? Why very strong woman, she’ll take does she need a chaperone? And she no nonsense. So we felt confident must have called out about a dozen approaching services and being times, louder and louder, I need a out as a couple. chaperone! And it got louder and louder. And then eventually one of the nurses came up to her and said, 21

22 Hiding who I am – the reality of end of life care for LGBT people What are the issues? ‘What do you need a chaperone for?’ Because it might cause more anxiety, being part of the process... She answered, ‘Because she’s Does that make sense?...Yes, so it’s a lesbian!’ not a win-win; it’s a lose-lose. And I can’t tell you how furious I was, either way you become anxious.” but I was just simply too ill to – Louise, 51, trans woman living deal with it.” with COPD “I couldn’t imagine going back into “It was very worrying, trying to find that way of living and hiding who I the right place for my partner to be am. My worst nightmare would be in. I went to a couple of places. I went being in an old people’s home. I bet to a Methodist foundation. First of it’s everyone’s worst nightmare. all, I’m not religious at all. I just didn’t The thought of going back into the feel comfortable. I didn’t feel able to closet really, into a heterosexual say, ‘I’m looking for a place for my environment, would be awful at the – Trisha, aged 61, bereaved partner.’” end of your life. If your past has been partner of lesbian woman living quite difficult and you’ve struggled, with dementia it’s hard to think about the future (with those sorts of worries).” – Sandra, lesbian, 60 “It’s the humiliation of the personal care because there is a care thing that goes from social worker to care team. And I’ve been fearful that girls are going to walk in here who hadn’t been pre-warned about it...when I hadn’t had the genital surgery...And I feel hurt because I’m aware that in the background some sort of process is happening without my knowledge, without my acceptance. I haven’t been involved in a discussion...But then would it have done any good if I had been involved in the discussion? 22

23 What are the issues? Hiding who I am – the reality of end of life care for LGBT people “It was already in her memory book 2. Complexities of for her thanksgiving service. She religion and LGBT held her hand and just sang... The end of life care upshot was she saw the person Anecdotal evidence suggests that which included recognising our palliative and end of life care services relationship. Holistic care is about may not always ensure LBGT patients the whole person; it does not have and their families have the same to be a man or woman with a spiritual needs addressed at the collar on, it can be anyone who can end of their life as any other patient. understand that we are at our closest Gay men in particular may be to faith and/or our own spirituality concerned that they will be treated when facing death. It’s made so with hostility by church-affiliated 49 providers of hospice care . much harder by the failure of those who provide care to recognise our Like heterosexual people, LGBT people humanity, regardless of the gender can have deeply rooted faith (residual or active) and belief structures, as well of the person we have dedicated our as established religious affiliations. – Carol, 57, partner of Diane live s to.” This area is under-researched, but who had breast cancer service providers must consider the role of recognised and unrecognised religious affiliations in delivering a 3. Assumptions holistic approach to end of life care about identity and which considers the whole person and what is important to them at the end family structure of their lives. Health and social care professionals often assume that LGB people using “It was one of the hospice chaplains services are heterosexual. Trans that still brings back some warmth people similarly report that they are to the memory; she walked into the often referred to by the pronouns of room, introduced herself and just their birth gender, asked insensitive sat with Diane. She did not want questions about being trans, or even to know if she had any affiliations ‘outed’ as trans in front of other religiously, and then for some reason patients and staff. just said, ‘I can sing something if you A study conducted in 2006 found that would like’. Diane nodded. This lady practitioner and staff attitudes towards then sang Diane’s favourite piece of sexual identities influences the quality of care offered and received, and that religious music, John Rutter’s ‘The heterosexual assumption may exist Lord Bless You and Keep You’. 50 throughout care . 23

24 What are the issues? Hiding who I am – the reality of end of life care for LGBT people The survey was developed using a The reality of assumptions similar model to one used to interview about identity care home staff on their attitudes and Some health and social care performance in addressing the needs professionals may deliberately 52 of LGBT people at the end of life . avoid conversations about sexuality and gender identity, or assume Just over 70% of respondents said heterosexuality, because they feel a they agreed or strongly agreed that it patient’s sexuality has nothing to do was easy to assume that individuals with the care they deliver. Fifty seven accompanying patients are related by per cent of health and social care blood or marriage. Many respondents professionals surveyed by Stonewall volunteered that they felt patients for the Unhealthy Attitudes project should be treated the same, regardless said that a person’s sexuality had of sexuality or gender. 51 nothing to do with their healthcare . What is the impact of Health and social care professionals assumptions about identity? may hold this attitude because The assumption of heterosexuality or they misunderstand the importance the use of birth gender pronouns by of sexuality and gender identity health and social care professionals to patients. does not necessarily indicate In some cases this is because disapproval of LGBT people. health and social care professionals It does, however, lead to challenging understand sexuality purely as who situations where LGBT people must someone has sex with, and not an make a decision about whether to aspect of someone’s identity that plays disclose their true identity and risk a large role in determining who they misunderstanding or discrimination, or love, who is important to them, who is to continue under the assumption that a part of their family, and the way they has been made about them, excluding need to be cared for at the end of life. parts of their lives which they feel may We found this attitude common when expose them. we undertook a survey of our own One research paper defined three hospice staff and volunteers in order strategies that LGBT people adopt to understand attitudes around the in response to these kinds of importance of considering a patient’s situations: active disclosure (ie verbally sexuality alongside their end of life correcting the mistake), passive * care needs . disclosure (correcting the mistake through behaviour), and passive * Marie Curie currently has nine hospices located throughout the UK, with around 994 members of staff. Throughout the nine hospices, Marie Curie cares for around 8,500 people per year (Marie Curie, November 2015). The survey was circulated to all hospice staff and hospice volunteers. There were 153 responses to the survey which was conducted during April 2016. 24

25 What are the issues? Hiding who I am – the reality of end of life care for LGBT people As Stonewall notes, there is often a non-disclosure, where people neither well-meaning intention behind this revealed their sexuality nor claimed a response, with many health and social heterosexual identity. care professionals saying they treat While passive non-disclosure might everyone the same, regardless of their mean that people avoid stigma and 57 sexual orientation . discrimination, it also means that there may be a lack of recognition by However, there is conclusive evidence health and social care professionals of that sexual and gender identity do who is most important to the person have a major impact on people’s health 53 58 approaching the end of life . needs . Stonewall notes that LGBT people are more likely to experience This can result in professionals anxiety and depression, and research discrediting the role of same-sex from Cambridge University shows partners and partners of trans that LGB people are more likely to 54 people , or making assumptions 59 experience all kinds of mental illness . about who the closest person to the patient is. What people say they need These assumptions can sometimes One of the key ways this can be mean that partners or loved ones are improved is by promoting inclusive excluded from important decisions language which may help people about future treatment or care, feel they can disclose their sexuality despite research by the University or gender without any fear that they of Nottingham showing that LGBT are correcting assumptions or going people want significant others in their against ‘what is normal’. lives to be acknowledged and involved This can be as straightforward as 55 in their care . asking questions like “who are the Many of the respondents to The Last most important people in your life?” Outing had anecdotal stories of a friend and what someone’s preferred name to whom this had happened – such is to alleviate any pressure on gender as a trans person being buried under identity. Any forms patients need to fill their birth name, against their wishes in should also use inclusive language – and it fuelled their own wariness of and serve as an opportunity to start health and social care services at the conversations between patients and 56 end of life . health and social care professionals. For LGBT people, the possibility that By giving patients an option to a health and social care professional self-identify as LGBT, this can start may react badly to being corrected and a helpful conversation with those that this may have an impact on the involved in their care to discuss what care they receive is always possible. is important to them at the end of life, survey The Last Outing Respondents to and who they would like to be involved cited a large number of anecdotal in their care. cases where friends had their sexuality or gender identity ignored at the end of life. 25

26 Hiding who I am – the reality of end of life care for LGBT people What are the issues? “I’ve been in resus where I didn’t “Sometimes, when we were talking to people and Sharon said ‘my know if I was going to survive the event or not...where it has 10 partner’ people might say ‘what’s his name?’ and some thought I was her bays with 10 patients, just with sister but then were apologetic when curtains. And you can hear every – Norma, 54 conversation...Some doctors have I told them.” said to me, ‘How long have you been ’They don’t ask you about your transgendered for?’ and everybody sexuality, they ask about your – Louise, 51, trans woman has heard.” heterosexuality: ‘Do you have living with COPD children?’... which is not an offence. It’s a simple question. But it creates Varied support 4. that tiny little bit of distance...which is saying, I’m heterosexual and I networks wonder what your experience of LGBT people at the end of life may heterosexuality is...And it’s perfectly choose to be surrounded by close fair, it doesn’t offend me or anything friends and support groups which like that. But it says I’m different. represent constructed support networks alongside biological Basically it’s ...speaking in ways that ones. These families can often be assume that you already share that referred to as ‘families of choice’, sexuality, rather than coming at the 60 or ‘lavender families’ . topic with an open mind that you The involvement of these families – Andrew, 67, gay man might be gay.’” can sometimes present challenges living with lung cancer for health and social care staff as this support group and more “I think there needs to be more of traditional biological support groups a realisation that people are gay may not agree over the care of the because there is an assumption that LGBT patient. everyone is straight. You know, I’m One Marie Curie member of staff forever being called Mrs somebody noted the particular difficulties this or other. Just to think about it before can cause in establishing who is best they assume. And my partner would placed to provide care and support and not be amused by me saying this but how to manage conflicts between the she’s older than me, so we’ve got various support groups: nearly 19 years of an age gap; I think a lot of people do assume she’s my – Lynda, lesbian, 64 mother, actually.” 26

27 Hiding who I am – the reality of end of life care for LGBT people What are the issues? of kin formally, on their admission “Visiting rotas needed to be sorted to hospital. However, if patients are as blood relatives weren’t accepting unable to say, the hospital will try to – Marie Curie of their loved one.” work out who is the person closest staff member to them. The advice also highlights that in practice, hospitals have The complexities of these relationships generally used spouses and close can put extra strain on the patient at blood relatives to define next of kin an already vulnerable time and it is and that this has been more common important that LGBT people are able 62 with same-sex partners . to access the care and support they The Last Outing revealed that confusion need from those they wish to be over who can be named as next of kin closest to them. and a lack of legal clarity can result LGBT people can also feel concerned in partners or close friends of LGBT that their loved ones will not be patients being overlooked as the respected and recognised as next person most capable of acting on their of kin. Age Concern in Wales found loved ones’ behalf. that older LGBT people often worry A Nursing Times article in 2012 based that the person they might regard on the publication of The Route to as next of kin, or who is most able to Success in End of Life Care - Achieving express their needs and desires could Quality for Lesbian, Gay, Bisexual be disregarded by care professionals, found that and Transgender People particularly if a person from the family there were significant challenges of origin appears and attempts to presented to healthcare staff around 61 take over . assumptions of next of kin, particularly For trans people, there are further for LGBT patients at the end of life. The concerns about being recognised as article highlights that key to delivering their birth gender or a gender they high-quality person-centred end of don’t identify with when they can no life care, is understanding complexities longer advocate for themselves, and in around family dynamics, which may some cases, being treated after death need to consider the basis of the as a gender which their family feel is relationship the patient has with their appropriate but may not align with blood relatives and whether they are their wishes. 63 accepting of their status as LGBT . Next of kin definition What people say they need The Royal Free London NHS Advance care planning can become Foundation Trust states that despite increasingly important for LGBT widespread use of the phrase, who is people at the end of their life. next of kin to a hospital patient is not Advance care planning is about actually defined in law. It notes that thinking ahead and talking to the the policy in most NHS trusts is to people involved in a patient’s care, ask patients to nominate who is next 27

28 What are the issues? Hiding who I am – the reality of end of life care for LGBT people such as their family, friends, doctors “We’re not in a formal partnership at and nurses, and other services involved the moment. For a variety of in the delivery or provision of care. reasons that’s not happening in the In end of life care planning, it is a key near future. Of course being in a process that allows patients to express formal partnership and being able to preferences about the care they would like to receive, and who they would like wave your papers is the easiest and to advocate for them on their behalf quickest way of being recognised as should they become unable to make or next of kin, and we’ve got to work 64 communicate their own decisions . on that, but I suspect that straight Survey and interview respondents to couples don’t actually have to wave report that advance The Last Outing – Carol, 70, their marriage lines.” care planning is important for LGBT partner of lesbian woman living with people. Eighty-two per cent agreed bowel cancer and lung disease that it was particularly important for LGBT people to make and record plans “We went to some considerable for future care, however only 18.5% of lengths and some considerable the respondents had written down and cost to ensure that we had a level of recorded their preferences for future 65 legal protection to be recognised as care and treatment . each other’s next of kin, the one to In the survey of Marie Curie hospice make decisions if that need arose. staff, members of staff highlighted I mean, fortunately we never really that LGBT people may have specific had to test that but it was reassuring needs at the end of life around “future care planning to allow transfer of for us, having heard horror stories assets etc/will writing”. about people’s partners being denied access to their bedside. Some motivations for LGBT people to complete advance care plans include So it’s a little bit of protection for issues similar to those reported for each other really when having to the general public, such as not placing deal with each other’s biological burdens on others, but there were families who might potentially have also distinct issues highlighted in the a different opinion - probably research such as providing protection for partners and significant others who because of their own grief and upset might otherwise not be recognised. and what have you. Obviously, since we’ve had our civil partnership, that gives us a whole layer of protection over and above that anyway.” – Lydia, lesbian, age 46 28

29 Hiding who I am – the reality of end of life care for LGBT people What are the issues? never wanted it to be known that he Unsupported grief 5. was gay. And I respected that. [If ] and bereavement he wasn’t out, I wasn’t out either. LGBT relationships may not be I couldn’t talk to my family ... they openly acknowledged or accepted. thought David was just a friend. I If a relationship isn’t recognised was a right mess. I had nobody to as existing, grief may also not be tu r n to.” recognised in the usual way. In that situation, LGBT people may feel under What is the impact of more pressure to hide their grief, and unsupported bereavement? may not be identified as needing People in same-sex relationships support. This is sometimes referred to may struggle both to have their grief 66 as disenfranchised grief . recognised, and to recognise their own grief, particularly if their relationship found that having The Last Outing was not validated by others both their wishes respected after death 68 publicly and privately . was particularly important for LGB people at the end of life. It highlighted Disenfranchised grief can reduce the importance of their loved ones the level of support available to the being supported and involved in the bereaved partner or loved ones and process after death. Many of the can make it harder to access the usual respondents to the survey were able to sources of support during an already 69 give examples of stories of LGB people isolating time . who had died and their partners or The loss of a partner for anyone close friends had been excluded from who is LGBT can also sometimes funerals or any similar arrangements. lead to a loss of identity if they had For example, Jeremy and his partner defined themselves as LGBT purely David had not disclosed their through their existing relationship. relationship to anyone. Jeremy said The loss of the relationship can David had been very clear they could sometimes lead to people feeling not be open about their relationship. that their LGBT identity is once again When David died, his family made the hidden due to a lack of support for the funeral arrangements in which Jeremy relationship and support through the 67 70 had no say : grieving process . “I knew he wanted a burial and he wanted to be buried next to his mother. He ended up being cremated [which] was totally against his religion ... I couldn’t stop them but it was like strangers organising his funeral; I was his family... But he 29

30 What are the issues? Hiding who I am – the reality of end of life care for LGBT people What people say they need Increased pressure 6. It is crucial that healthcare on LGBT carers professionals and those working Although LGBT people are likely with patients and their loved ones to have a higher reliance on formal encourage discussions about who is care services due to a lack of distinct important to patients. Staff should 71 support networks , the pressure be supported to explore any existing on carers of LGBT people can be relationship dynamics which may greater due to a reluctance to access affect a patient’s last wishes and these services. preferences and help identify who needs support during bereavement by LGBT people can sometimes feel having honest and open discussions more comfortable staying in their with the patient. own homes or a desired place of care because of a fear of discrimination “I do think there is a difference, you from health and social care services can’t be as open. But then having or a worry that other services aren’t experienced the death of my father suited to their needs. However, this can mean that informal carers may have to years ago, it’s death that people provide higher levels of care for longer struggle with, and if you then add a and try and provide care which may layer about somebody’s sexuality, be more suited to being provided by a I think that makes it even more trained professional. complicated for people because Another concern expressed by LGBT they’re not sure how to respond.” people at the end of life is that they – Melanie, 54, bereaved partner may have to hide their true identity of a lesbian woman who died of if they choose to receive formal care ovarian cancer at home. In their guide for care and support staff working with lesbian, gay, “That’s why when Leo died bisexual and trans people, Stonewall it was such a huge blow, because we states that 95% of older gay people were one person really and [we] were say they would prefer to live in their totally involved together, and that own home for as long as possible was the sort of real whammy and they are nearly twice as likely of the bereavement, because once as older heterosexual people to rely on a range of external services for he’ d gone there was nobody else.” 72 support . However, some people fear – Ken, gay man, 70 these providers could still discriminate against them. 30

31 What are the issues? Hiding who I am – the reality of end of life care for LGBT people What people say they need How many people are affected? A positive step which could be made Carers UK highlights that there are to avoid this is to encourage the 6.5 million carers in the UK. In this context, a carer can be anyone who professionals involved in care to provides unpaid care and support to signpost support for carers earlier, to ease the pressure on those providing a family member or friend who is ill, 73 care to a loved one. disabled or in need of care . Currently, there is no formal research which It is also important for staff to take shows how many people in the UK are a person-centred approach to care, providing care or end of life care to understanding the relationship someone who is LGBT. between the care receiver and provider, and the best way to recognise What is the impact of pressure that relationship. on LGBT carers? This can be something as simple as Carers of LGBT people can feel asking questions which do not make under increased pressure to care presumptions about the relationship of for longer without support. This the carer to the person they are caring is because LGBT people are more for, and asking the carer whether they likely to access services later due feel they have enough support. to a fear of discrimination or lack of acceptance and understanding of their relationships and personal 74 circumstances . In their support for carers, the LGBT Foundation highlights that as an LGBT carer looking after a partner, there may be pressure to ‘come out’ about the nature of the relationship with the various professionals involved in their 75 care . For people who choose not to disclose their sexuality or gender identity in a place where they had previously felt comfortable to do so, this can have negative effects on their wellbeing, and would prevent the best possible experience at the end of a loved one’s life. 31

32 32 Queerstock

33 Attitudes towards end of life care for LGBT people at Marie Curie Hiding who I am – the reality of end of life care for LGBT people Attitudes towards end of life care for LGBT people at Marie Curie Despite a lack of comprehensive “I genuinely haven’t heard any research on the end of life experiences homophobic comments from of LGBT people, the case studies and in-depth interviews carried out by members of staff or in fact anything the ACCESSCare project and The Last judgemental or negative said, Outing show that further analysis is which is a lovely thing. But because needed on care for LGBT people at the I haven’t heard it, that doesn’t end of their life, and in particular the mean the issue still isn’t one which performance of care settings. is very real for some people. As a To understand more about our own straight woman my experience and services and how Marie Curie is sensitivities are different and I might performing in relation to end of life not have picked up on things.” care for LGBT people, we conducted a survey of our nine hospices to gain The survey also showed that there was a wider understanding of how LGBT some confusion around the process issues are perceived in this setting, of recording LGBT status and whether and how supported staff felt in this was good practice or unnecessary, addressing these. as well as a lack of clarity over The results of the survey showed procedures in place to deal with any that Marie Curie staff have positive negativity from other service users. attitudes to LGBT people across the board, and an acceptance and respect “I feel able to ask about this but am for their personal choices. However, unsure if it is an integral part of the staff may not recognise that LGBT current set up/admission process.” people at the end of life may have specific needs, particularly around existing fears of discrimination. The survey results showed examples of good care, with hospice staff ensuring they take a person-centred approach to care. 33

34 Hiding who I am – the reality of end of life care for LGBT people Attitudes towards end of life care for LGBT people at Marie Curie Of the 153 respondents to the survey, “I always talk in terms of ‘those 65% agreed there was a need for who are important to you’ as more training on this subject to support staff. opposed to ‘ family’ so I am open to that being whoever it is. The key “My preference would be to for me is asking the patient.” access training that is already available from external agencies - The survey also confirmed that issues in the morning, externally-led surrounding correct identification of next of kin and dealing with complex generic training about LGBT family relationships can be challenging issues, then in the afternoon for staff and this may be an area where have internally-led end of life more support can be offered in future. specific training.” “One person struggled to feel that “Wouldn’t it be wonderful if this his partnership was acknowledged was no longer an issue of acceptance and accepted. Another was not but of being able to fully address allowed by the deceased’s family to the specific needs of members of take up his role. Another kept up the the LGBT community? I recognise pretence of being a carer until after I need training to fully be aware his partner had died.” of the individual needs.” Questions were asked about staff training in the survey, to understand whether there was appropriate training in place on end of life care for LGBT people, for care providers and hospice staff, and what the existing demand is for improving this. 34

35 Conclusions Hiding who I am – the reality of end of life care for LGBT people Conclusions What does good “My priority is there should be a care for LGBT decent service for everybody and that is a service which respects people look like? diversity as part of the day job.” Research shows that LGBT people approaching the end of life have a “I want my sexual orientation to be clear idea of what good care looks like fully accepted, not just tolerated.” for them. Two of the most important indicators are whether or not they are “I’ d like carers who accept my receiving care centred around them as anatomical differences as a an individual and whether or not their trans person.” partner is accepted as such. Some other comments from the “That they welcome a same sex existing research on what good care partner but don’t need to comment looks like included: on it, that they are respectful and open and honest with me. That they’re friendly, I suppose, and interested in what I’m doing and have a sense of humour about everything.” 35

36 Conclusions Hiding who I am – the reality of end of life care for LGBT people We want everyone to “I am consulted on decisions about be able to identify with my care and what is best for me.” the below statements: “I know where to go to find out about my options for end of life care.” “I feel comfortable disclosing my sexuality/gender to those providing “I feel confident that those closest to my care and know that they will me will be supported after my death.” support me in this decision.” “I feel confident that services providing my end of life care will take a person-centred approach.” “I can recognise from materials and literature that end of life care providers equally represent me and my need s .” “I feel confident that those I wish to be around me at the end of my life will be there.” “I feel comfortable receiving care in a place of my choice without the fear of discrimination or judgement.” “I feel supported to complete an advance care plan and confident my wishes will be respected.” “The people closest to me are identified and supported in an appropriate way, both while I am alive and after my death.” 36

37 Hiding who I am – the reality of end of life care for LGBT people Conclusions • raising the issue of good end of Our commitment life care for LGBT people with To achieve this, Marie Curie is parliamentarians and other key policy committed to: stakeholders. • ensuring that literature and materials We will continue to conduct an annual in our services represents all diverse survey of Marie Curie hospice staff groups, including LGBT to understand how awareness is • reviewing the language used growing around LGBT people’s throughout hospice services specific end of life care needs and to ensure more inclusive terms measure our success in supporting such as ‘partner’ staff so they can deliver high-quality, • further developing internal person-centred care. monitoring systems to understand the demographic of people Recommendations accessing hospice services, We would also encourage other including LGBT people service providers to commit to the • supporting staff through further following actions: training to understand that LGBT • Undertake training for staff on the people may have specific concerns specific concerns or needs of LGBT or needs at the end of life people at the end of life, including in • highlighting the importance of the context of home care services. patient-centred care which looks • Work with other national and to establish which people and what local charities to help promote the factors are important to the patient importance of LGBT appropriate • helping staff to understand internal services at end of life. policies and practices relating to • Ensure that literature and materials negative or discriminatory attitudes about end of life care services from either hospice users or staff represents all diverse groups, • working with local and national including LGBT. LGBT groups to raise awareness • Share examples of local excellence of high-quality end of life care in end of life care for LGBT people. • working with other national and • Work with local LGBT groups to local charities to help promote the understand more about end of life importance of LGBT-appropriate care needs and facilitate a national services at end of life and of advance conversation about these. care planning Specifically explore issues relating • • supporting the rights of LGBT carers to LGBT communities and access • gathering examples of local to palliative care when considering excellence in end of life care for national implementation strategies. LGBT people 37

38 Hiding who I am – the reality of end of life care for LGBT people Conclusions Final words LGBT people, like everyone else, have the right to be treated with dignity and respect and spend their last months, weeks, and days with the people that they love. The hospice and palliative care sector has always been committed to caring for people and understanding their needs, but on the issue of care for LGBT people, there is a danger that the sector is lagging behind the rest of the health and social care system. We know that with attitudes to LGBT people changing and the number of people dying annually growing that there will be substantial demand for person-centred palliative care. Providers of palliative care must start making these changes now, so that LGBT people not only see hospice and palliative care services as ‘for them’, but places where they and their families of choice are actively welcomed. Marie Curie is committed to seeing this change happen in our own services and to work in partnership with other providers to see a greater focus across the UK on the care and support LGBT people need at the end of their lives. 38

39 Hiding who I am – the reality of end of life care for LGBT people References References Marie Curie (2016) The Hidden Challenges of Palliative Care 1 , https://www.mariecurie.org. uk/globalassets/media/documents/policy/policy-publications/february-2016/hidden- challenges-palliative-cancer-care-report.pdf Marie Curie (2014) https://www.mariecurie.org.uk/help/terminal-illness/diagnosed/ 2 palliative-care-end-of-life-care#endoflifecare 3 National Voices. A Narrative for Person-Centred Coordinated Care [powerpoint], https://www. england.nhs.uk/wp-content/uploads/2013/05/nv-narrative-cc.pdf 4 Barker M, Richards C, Jones R, Bowes-Catton H and Plowman T. (of BiUK) (2012) The Bisexuality Report: Bisexual inclusion in LGBT equality and diversity : 3 Gendered Intelligence (2016) http://genderedintelligence.co.uk/ 5 6 University of Michigan (2016) International Spectrum , https://internationalspectrum. umich.edu/life/definitions 7 , http://sk.sagepub.com/books/key- Edwards R., McCarthy J.R. (2011) Families of Choice concepts-in-family-studies/n13.xml Equity in the Provision of Palliative Care in the UK: Review 8 London School of Economics (2015) , http://www.pssru.ac.uk/archive/pdf/4962.pdf of Evidence 9 Harding R, Epiphaniou E, Chidgey-Clark J (2012). Needs, experiences and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. Journal of Palliative Medicine.15: 602-11. Bristowe K, Marshall S, Harding R (2016). The bereavement experiences of lesbian, gay, 10 bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and . Palliative Medicine. DOI: 10.1177/0269216316634601 modelling of the literature 11 Department of Health (2008) End of Life Care Strategy Promoting high-quality care for all adults at the end of life , https://www.gov.uk/government/uploads/system/uploads/ attachment_data/file/136431/End_of_life_strategy.pdf 12 National Council for Palliative Care (2011) Open to all? Meeting the needs of lesbian, gay, bisexual and trans people nearing the end of life The route to success in end of life care – achieving quality for lesbian, gay, bisexual 13 NHS (2012) and transgender people , http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts- lgbt.aspx Care Quality Commission (2016) A different ending: Addressing inequalities in end of life care , 14 https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_OVERVIEW_ FINAL_3.pdf 15 The Scottish Government (2016) Strategic Framework for Action on Palliative and End of Life Care: Equality Impact Assessment Results , http://www.gov.scot/ Resource/0050/00500033.pdf The Scottish Government (2016) Strategic Framework for Action on Palliative and End of Life 16 , http://www.gov.scot/Resource/0049/00491388.pdf Care 2016-2021 The Scottish Government (2016) Strategic Framework for Action on Palliative and 17 End of life Care 2016- 2021: Equality Impact Assessment , http://www.gov.scot/ Resource/0050/00500033.pdf NHS Wales (2013) Together for Health Delivering End of Life Care , http://www.wales.nhs.uk/ 18 sitesplus/documents/862/Together_for_Health-Delivering_End_of_Life-Care.pdf 19 Department of Health, Social Services and Public Safety (2010) Living Matters, Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland , http://www. ncpc.org.uk/sites/default/files/8555_palliative_final_0.pdf 39

40 References Hiding who I am – the reality of end of life care for LGBT people Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) 20 The Last Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final . Nottingham: University of Nottingham Report Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) The Last 21 Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final Report . Nottingham: University of Nottingham ACCESSCare , http://www.kcl.ac.uk/lsm/ 22 King’s College London (2014) research/divisions/cicelysaunders/research/living/access/index.aspx?utm_ ource=Weekly+subscriber+news&utm_campaign=d10410b24c-Weekly_ bulletin_17_27Feb&utm_medium=email&utm_term=0_495b101a8e- d10410b24c-309150933 Office for National Statistics (2014) http://www.ons.gov.uk/ 23 peoplepopulationandcommunity/populationandmigration/populationestimates/ bulletins/annualmidyearpopulationestimates/2015-06-25 Changing the Conversation: Care and support for people with a terminal 24 Marie Curie (2015) illness now and in the future , https://www.mariecurie.org.uk/globalassets/media/ documents/policy/campaigns/changing-the-conversation-report.pdf 25 Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) The Last Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final . Nottingham: University of Nottingham Report 26 Bristowe K, Marshall S, Harding R (2016). The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature. Palliative Medicine. DOI: 10.1177/0269216316634 6 01 27 Oliviere D., Monroe B., Payne S., (Eds), (2011) Death, Dying, and Social Differences : 194 28 Working with older lesbian, gay and bisexual people , https://www.stonewall.org. Stonewall, uk/sites/default/files/older_people_final_lo_res.pdf 29 Stonewall and YouGov (2015) Unhealthy Attitudes: The treatment of LGBT people within health and social care services , http://www.stonewall.org.uk/sites/default/files/unhealthy_ attitudes.pdf 30 Opening Doors London (2016) http://openingdoorslondon.org.uk/ 31 NHS (2012) The route to success in end of life care – achieving quality for lesbian, gay, bisexual and transgender people , http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts- lgbt.aspx 32 Jones, Rebecca L. (2010) Troubles with bisexuality in health and social care. In: Jones, Rebecca L. and Ward, Richard eds. LGBT Issues: Looking beyond Categories. Policy and Practice in Health and Social Care (10). Edinburgh: Dunedin Academic Press, pp. 42–55 UK Parliament Women and Equalities Committee (2016) http://www.publications. 33 parliament.uk/pa/cm201516/cmselect/cmwomeq/390/390.pdf 34 NatCen (2015) http://www.natcen.ac.uk/news-media/press-releases/2015/may/british- social-attitudes-support-for-same-sex-marriage-continues-to-rise/ 35 Park, A., Bryson, C., Clery, E., Curtice, J. and Phillips, M. (eds.) (2013), British Social Attitudes: the 30th Report , London: NatCen Social Research, available online at: www.bsa-30.natcen. ac.uk 36 Stonewall (2013) Homophobic Hate Crime: The Gay British Crime Survey 2013 , https://www. stonewall.org.uk/sites/default/files/Homophobic_Hate_Crime__2013_.pdf 37 http://www.galop.org.uk/wp-content/uploads/2013/08/The-Hate-Crime-Report-2013. pdf 40

41 References Hiding who I am – the reality of end of life care for LGBT people 38 Equality groups perceptions and experience of crime, Equality & Human Rights Commission, 2011 (Analysis of British Crime Survey data for 2007/08, 2008/09 and 20 09/10) Stonewall and YouGov (2015) Unhealthy Attitudes: The treatment of LGBT people within health 39 , http://www.stonewall.org.uk/sites/default/files/unhealthy_ and social care services attitudes.pdf The Last 40 Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final . Nottingham: University of Nottingham Report 41 Care Quality Commission (2016) A different ending: Addressing inequalities in end of life care , https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_OVERVIEW_ FINAL_3.pdf http://socialwelfare.bl.uk/subject-areas/services-client-groups/minoritygroups/ 42 ehrc/129840dont_look_back_improving_health_and_social_care.pdf 43 Lesbian, gay, bisexual and transgender health, Journal of the Gay and Dean L. et al (2000) 4 (3): 102 – 51 Lesbian Medical Association 44 ‘Early palliative care for people with metastatic non-small-cell lung 20 Temel J et al. (2010) cancer .’ The New England Journal of Medicine 363: 733-42 Zimmerman C et al. (2014) ‘ Early palliative care for patients with advanced cancer: a cluster- 45 .’ The Lancet 383 (9930) 1721–1730 randomised controlled trial 46 Wilmont SS (2014) ‘ Palliative care patients fare better with earlier referrals .’ American Journal of Nursing 114 (11) 17 47 Dionne-Odom JN et al. (2015) ‘ Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients with Advanced Cancer: Outcomes from the ENABLE III Randomized Controlled Trial .’ Journal of Clinical Oncology 33 (13) 1446-52 Carers UK (2015) 2015 https://www.carersuk.org/for-professionals/policy/ 48 State of Caring policy-library/state-of-caring-2015 49 Richard Harding, Eleni Epiphaniou, and Jayne Chidgey-Clark. Journal of Palliative Medicine. May 2012, 15(5): 602-611. doi:10.1089/jpm.2011.0279. Neville S., Henrickson M., (2006) 50 Perceptions of lesbian, gay and bisexual people of primary healthcare services , Journal of Advanced Nursing, 55 (4), 407-415 51 Stonewall and YouGov (2015) Unhealthy Attitudes: The treatment of LGBT people within health and social care services , http://www.stonewall.org.uk/sites/default/files/unhealthy_ attitudes.pdf 52 Almack, K and Simpson, P (2014) Care home survey: knowledge, attitudes and practices concerning LGBT residents , http://www.scie-socialcareonline.org.uk/care-home- survey-knowledge-attitudes-and-practices-concerning-lgbt-residents/r/ a11G0000003D0mrIAC 53 Harding R, Epiphaniou E, Chidgey-Clark J (2012). Needs, experiences and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. Journal of Palliative Medicine. 15 : 6 0 2-11. 54 Eyler A Evan,. Witten T.M., (Eds) (2012) Gay, Lesbian, Bisexual and Transgender Aging: Challenges in Research 55 Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) The Last Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final . Nottingham: University of Nottingham Report 41

42 Hiding who I am – the reality of end of life care for LGBT people References The Last 56 Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final . Nottingham: University of Nottingham Report 57 Unhealthy Attitudes: The treatment of LGBT people within Stonewall and YouGov (2015) , page 6, http://www.stonewall.org.uk/sites/default/files/ health and social care services unhealthy_attitudes.pdf Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) The Last 58 Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final . Nottingham: University of Nottingham Report Elliott, MN et al (2014) Sexual Minorities in England Have Poorer Health and Worse Health Care 59 Experiences: A National Survey . Journal of General and Internal Medicine; http://www.cam. ac.uk/research/news/lesbian-gay-and-bisexual-men-and-women-report-poorer- health-and-experiences-of-nhs The constitution of ‘ lavender families’: a LGB perspective 60 Henrickson M., Neville S. (2009) , http://www.ncbi.nlm.nih.gov/pubmed/18800992 A report of the Older LGBT Network into the specific needs of older 61 Age Concern Cymru (2009) lesbian, gay, bisexual and transgender people , http://www.openingdoorslondon.org.uk/ resources/Age_Concern_Cymru_Older_LGBT_Network_report_2009.pdf Royal Free London NHS Foundation Trust, https://www.royalfree.nhs.uk/patients- 62 visitors/advice-and-support/next-of-kin/ Henry C. (2012) Nursing Times, http://www.nursingtimes.net/nursing-practice/clinical- 63 zones/end-of-life-and-palliative-care/ensure-you-meet-the-end-of-life-needs-of- lgbt-people/5051066.article 64 Marie Curie (2014) https://www.mariecurie.org.uk/help/terminal-illness/planning- ahead/care-planning#whatisadvancecareplanning Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) The Last 65 Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final Report . Nottingham: University of Nottingham Disenfranchised Grief: Recognising Hidden Sorrow 66 , Lexington Books Doka K. (Ed) (1989) 67 Almack K., Seymour, J. and Bellamy, G., 2010. Exploring the impact of sexual orientation on experiences and concerns about end of life care and on bereavement for lesbian, gay and bisexual elders Sociology. 44(5), 908-924 Death, Dying, and Social Differences : 194 Oliviere D., Monroe B., Payne S., (Eds), (2011) 68 69 Oliviere D., Monroe B., Payne S., (Eds), (2011) Death, Dying, and Social Differences : 194 Oliviere D., Monroe B., Payne S., (Eds), (2011) Death, Dying, and Social Differences : 196 70 The Last Almack, K., Yip, A., Seymour, J., Sargeant, A., Patterson, A. and Makita, M. (2015) 71 Outing: exploring end of life experiences and care needs in the lives of older LGBT people: A Final Report . Nottingham: University of Nottingham 72 Stonewall, Working with older lesbian, gay and bisexual people, https://www.stonewall. org.uk/sites/default/files/older_people_final_lo_res.pdf Marie Curie (2015) The hidden costs of caring , https://www.mariecurie.org.uk/globalassets/ 73 media/documents/policy/policy-publications/december-2015/hidden-costs-of-caring. pdf 74 LGBT Foundation, http://lgbt.foundation/information-advice/Carers/ 75 LGBT Foundation, http://lgbt.foundation/information-advice/Carers/ 42

43 43

44 We’re here for people living with any terminal illness, and their families. We offer expert care, guidance and support to help them get the most from the time they have left. mariecurie.org.uk MarieCurieUK @mariecurieuk Charity reg no. 207994 (England & Wales), SC038731 (Scotland) B061

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