A new series that discusses how we can improve end of life experiences and care needs for people in minority communities.
Dr Kathryn Almack, Principal Research Fellow, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham, UK, draws upon some of the findings from her research study.
I have recently completed a major research study exploring the end of life care experiences and needs in the lives of older LGBT people (lesbian, gay, bisexual, and trans*people) in the UK, funded by Marie Curie Research Programme. In part, this study was prompted by consultation for the English End of Life Care Strategy Equality Impact Assessment (2008), which revealed that in terms of quality of end of life care, LGBT people were most at risk of discrimination.
In our survey, 74% of respondents reported feeling ‘not very confident’ or ‘not very confident at all’ that mainstream health and social care services provide sensitive and appropriate end of life care services for LGBT people. We found that forms of discrimination are not always overt but can include more subtle and sometimes unintentional forms of discrimination that are less easy to challenge. One example is ‘heteronormativity’; a cultural bias that views heterosexuality as ‘normal’ and taken for granted in a way that LGBT relationships and identities are not. Examples of heteronormativity include the under-representation of LGBT relationships and people in service promotion leaflets, or assumptions made that someone is heterosexual unless otherwise stated. Heteronormativity can make someone feel invisible, erase a big part of someone’s identity, and impact on their ability to involve those closest to them in their care. Some examples we were told by interview respondents include a bisexual woman sat in the waiting room with her female partner; when the nurse called her in she said: “Your sister can come with you.” In contrast, if it was a man and woman sat together of similar age, it is more likely that the nurse might check (or assume) first that they are husband and wife not brother and sister. A gay man told us about being wheeled onto a ward by one of the porters who said to him: “Lots of nice (female) nurses on this ward!” Harmless ‘banter’ perhaps but it made the patient feel awkward and silent. Questions about children and grandchildren may appear friendly attempts at conversation, but for many older LGBT people, having children wasn’t a possibility or they might be estranged.
When I’ve discussed these kinds of examples with nursing students, I hear responses such as: “We treat everyone the same,” or “If someone doesn’t tell you they’re gay what can you do?” LGBT people are not always in a position of being able to immediately let professionals they encounter know of their sexual orientation or gender identity; some might not wish to disclose their sexual or gender identity or talk about their relationships. What staff can do is to practise not making assumptions and using subtle ways of being open. The onus must be on staff, not patients, to ensure fair and equal quality care for all patients. That should include addressing specific issues to ensure that LGBT patients, their families and carers can feel they are in a non-discriminatory environment, and can feel comfortable and safe being themselves.
Links and resources
A summary, end of award report and updates on The Last Outing research project can be found under completed projects on the Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care’s webpage.
Almack K, Moss B and Smith T. (2015) Research and policy about end of life care for LGBT people: identifying implications for social work services, in J Fish and K Karban (eds.), Social Work and Lesbian, Gay, Bisexual and Trans Health Inequalities: International Perspectives. Bristol: Policy Press, pp. 173-186.
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.
Cartwright C, Hughes M and Lienert T. (2012). End of life care for gay, lesbian, bisexual and transgender people. Culture, Health and Sexuality, 14(5), 537-48.
Green L and Grant V. (2008) `Gagged Grief and Beleaguered Bereavements?’ An Analysis of Multidisciplinary Theory and Research Relating to Same Sex Partnership Bereavement. Sexualities, 11(3): 275-300.
Harding R, Epiphaniou E and 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 (5), 602-11.
Higgins A and Glacken M. (2009) Sculpting the distress: easing or exacerbating the grief experience of same-sex couples. International Journal of Palliative Nursing, 15(4): 170-176.
National End of Life Care Programme (2012) The route to success in end of life care – achieving quality for lesbian, gay, bisexual and transgender people.
Stein G and Almack K. (2012) Care Near the End of Life: The Concerns, Needs and Experiences of LGBT Elders. In R Ward, I Rivers and M Sutherland (editors) Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support. Jessica Kingsley Publishers: 114-134.
Ward R, Pugh S, Price E. (2010) Don’t look back? Improving health and social care service delivery for older LGB users. Equality and Human Rights Commission.
Whittle S, Turner L and Al-Alami M. (2007a) Engendered Penalties: Transgender and Transsexual People’s Experiences of Inequality and Discrimination. London: The Equalities Review.
Whittle S and Turner L. (2007b) Bereavement: A guide for transsexual, transgender people and their loved ones. Department of Health.
More on the EAPC Blog
Read an earlier post in this series by Dr Robert Killeen from the USA. Next week, Dr Richard Harding (Cicely Saunders Institute, King’s College London) joins the discussion.