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Research by academics at The University of Nottingham is driving new national guidelines aimed at ensuring that LGBT people – and their loved ones – are treated fairly and with respect when they are dying.
The study, The Last Outing: Exploring End of Life Experiences and Care Needs in the Lives of Older LGBT People, led by Dr Kathryn Almack in the University’s School of Health Sciences, found that two-thirds of older LGBT people who took part in the research did not feel confident that end of life care services will meet their needs.
The study, the first of its kind in the UK and funded by the terminal illness charity, Marie Curie, has already informed the Government review on Choices at the End of Life and a Care Quality Commission (CQC) review about variations in care and inequalities at the end of life.
Now the findings have been used in a new guide, Being Accepted, Being Me: Understanding the End of Life Care Needs of Older LGBT People, published recently by the National Council for Palliative Care (NCPC).
The publication aims to offer good practice guidance to health and social care staff and volunteers caring for LGBT people as they approach the end of their lives.
Equality and respect
Dr Almack said: “This resource sets out key concerns that older LGBT people discussed with us and outlines discussion points, ways forward and good resources to consider.
“It is our hope that health and social care professionals and volunteers will use this resource to learn more about listening, understanding and responding to the unique needs of LGBT people.”
The Chief Executive of NCPC, Claire Henry said: “The needs of LGBT people still often go unrecognised in end of life care and we hope that people will find this resource helpful in addressing that.
“In particular, we need to challenge the mindset that says ‘we treat everyone the same’. We are not all the same, we are individuals, and we need to make sure that LGBT people’s needs and preferences are understood at a personal level. People who have lived with discrimination in the past should not have to worry about being treated fairly and with respect when they are dying.”
The resource, publication of which was supported with a grant from the University’s ESRC Impact Acceleration Fund, can be seen as a complement to a Marie Curie resource, which also draws on the findings of The Last Outing Study and which was published earlier this year.
Hiding Who I Am: Exposing The Reality of End of Life Care for LGBT People, is aimed at policymakers and service providers to raise awareness and provide evidence of LGBT people’s specific needs and concerns at the end of life and how to address these.
The report looks at the barriers that prevent LGBT people from accessing end of life care and highlights their real experiences.
Tackling discrimination
It draws on the interviews with LGBT people living with terminal illness, and their partners, by the University of Nottingham study in addition to another study that Dr Kathryn Almack is involved in - King’s College London’s ACCESSCare study and includes examples of direct and indirect discrimination.
Scott Sinclair, Head of Policy and Public Affairs for England at Marie Curie, said: “No one should have to hide who they are at the end of their lives. If LGBT people are not confident about services or have experienced discrimination from healthcare providers in the past, they may not feel able to be open about themselves and the people who are important to them – factors that are all crucial to dying well.
“Learning about the prejudice LGBT people experience as they are dying, when they are at their most vulnerable, is deeply saddening.”
The Last Outing study adopted a mixed methods approach involving a survey of participants who self-identified as lesbian, gay, bisexual or trans, were aged 60 or over or had an LGBT partner aged 60 and over. This was followed by in-depth interviews with a group of the participants.
In addition to their concerns about end of life care services, the study also found that the past experiences of many participants would make them feel hesitant or even unsafe in approaching services for help and that many feared they would receive worse treatment than their straight peers from palliative care services.
Some respondents spoke about a lack of recognition of same sex partners or other close friends by health and social care professionals – this lack of recognition or false assumptions sometimes led to partners or significant others being excluded from important decisions about a person’s treatment or care.
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Notes to editors: The University of Nottingham has 43,000 students and is ‘the nearest Britain has to a truly global university, with a “distinct” approach to internationalisation, which rests on those full-scale campuses in China and Malaysia, as well as a large presence in its home city.’ (Times Good University Guide 2016). It is also one of the most popular universities in the UK among graduate employers and was named University of the Year for Graduate Employment in the 2017 The Times and The Sunday Times Good University Guide. It is ranked in the world’s top 75 by the QS World University Rankings 2015/16, and 8th in the UK for research power according to the Research Excellence Framework 2014. It has been voted the world’s greenest campus for four years running, according to Greenmetrics Ranking of World Universities.
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