Nearly three-quarters (74%) of lesbian, gay, bisexual and trans (LGBT) people are not confident that health and social care services provide sensitive end of life care for their needs. As a result, they often delay accessing the care they need and are more likely to experience unmanaged symptoms and pain at the end of their lives.
These are the findings of a new report from the terminal illness charity, Marie Curie. ‘Hiding who I am: Exposing the reality of end of life care for LGBT people ,’ looks at the barriers that prevent LGBT people from accessing end of life care and highlights their real-life experiences.
The report draws on interviews with LGBT people living with a terminal illness, and their partners, by the University of Nottingham (The Last Outing) and King’s College London (ACCESSCare). It includes examples of indirect and direct discrimination, including a dying lady whose doctor refused to see her without a chaperone because she was a lesbian.
Many people interviewed said they felt anxiety about having to hide who they are when accessing end of life care, with one in four experiencing discrimination from health and social care professionals in their lifetime. Others feared ‘outing’ themselves to care professionals, having grown up at a time when being gay was illegal.
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.”
Hannah Kibirige, Head of Policy, at Stonewall said:
“Lesbian, gay, bi and trans people in later life often experience specific forms of discrimination that go unnoticed by others around them. Often older LGBT people are extremely vulnerable, particular if in care or terminally ill, and so it’s vital that healthcare staff are aware of the experiences they face. It is a great step to see Marie Curie address this in their research and we hope that the findings go on to effect practical and positive change for lesbian, gay, bi and trans people.”
It is estimated that more than 40,000 LGBT people die each year in the UK. However, it is suggested that a significant number miss out on the care and support they need, despite experiencing higher rates of life-threatening diseases than the national average.
Notes to editor
Jonathan’s (60) partner was diagnosed with bowel cancer in 2005 and died in August 2015.
“It seemed I had to come out every day – multiple times a day sometimes – because most of the world is a heteronormative environment.”
“I got in touch with an advocacy helpline, and the receptionist at the end of the phone was nonplussed when I said that I was gay. She assumed I was calling about my wife.
“I was trying to find any possible way of getting help and support but her reaction – well, it put me off in a way. It did make me want to just not pursue that particular avenue.”
Margaret (78) cared for her partner who died with dementia and cancer.
“I was always aware of the way people might be reacting to the fact that we were lesbians and felt less comfortable in a public ward.
“Being lesbian made an already traumatic situation worse. I constantly felt in general like I always had my out myself to explain my role in her care.
“No one ever asked if we were legal partners. And as we had a civil partnership, I was legally her next of kin.
“Our life before this, you could be private about who you were, or you could choose who to tell; now the world and their mother knows you’re a lesbian.”
About The Last Outing
The Last Outing: exploring end of life experiences and care needs in the lives of older LGBT people was the first study of its kind in the UK; a two year study funded by Marie Curie Research Programme. Led by Dr Kathryn Almack at the University of Nottingham, this project follows on from Dr Almack’s previous work with the National End of Life Programme, raising awareness of end of life care needs of LGBT people. The study adopted a mixed methods approach involving a survey of participants (N = 237) who self-identified as lesbian, gay, bisexual or trans, were aged 60 or over or had an LGBT partner aged 60+, followed up with in-depth interviews (N = 60) with a representative sub-sample of survey. The research looked in detail at the particular needs of older LGBT people at the end of life. It also explored older LGBT people’s familial and friendship networks and how these personal networks may influence experiences towards and at the end of life.
The Last Outing:How confident are you that mainstream health and social care services provide sensitive and appropriate end of life care services for LGBT people?
235/237 answered and the responses were:
Very confident 1.7%
Fairly confident 17.87%
Not very confident 39.57%
Not confident at all 34.04%
Don't know 6.81%
About ACCESSCare
The ACCESSCare project is led by Dr Richard Harding at the Cicely Saunders Institute, King’s College London. Funded by Marie Curie, it responds to Dr Harding’s previous systematic literature review which highlighted a greater need for palliative care among lesbian, gay, bisexual and/or trans* (LGB and/or T) people, but a lack of evidence to inform an appropriate response. Therefore ACCESSCare aims to improve a) demand for, and b) supply of, palliative care for people who identify as LGB and/or T and are in the later stages of a life-limiting illness. It achieves this through collecting original data from LGB and/or T people with advanced disease (conducted by Dr Katherine Bristowe) to inform a) community resources co-designed with the LGBT Health Equality Rights Organisation (GMFA/HERO) and b) educational resources for palliative care staff (delivered nationally through enhanced curricula). We have also uncovered a great need for improved bereavement care, and recently published a systematic literature review on LGBT bereavement.