A new report published by the UK’s leading end of life charity Marie Curie in partnership with Superdrug is calling for changes to improve the care and support received by Lesbian, Gay and Bi-sexual (LGB) people and those close to them towards the end of life.
The report makes four key recommendations for healthcare professionals:
- Health and social care professionals should recognise that LGB people may have specific needs and desires about the people they want around them for support, and this may or may not include family members.
- Assumptions about a preference for support from family or friends should not be made, and instead professionals should have open conversations about who their LGB patients want around them for support at the end of life.
- The inclusion of “friends” in materials for patients and those close to them should be considered to recognise the important role that friends can play in supporting people towards the end of life.
- Cultural needs are particularly important for LGB people, highlighting a need for training for professionals to recognise and support cultural needs during caring activities and end of life planning.
These recommendations are based on research findings from 2,261 respondents that reveal the differences from heterosexual people and different groups within the LGB community regarding priorities and needs for the end of life. The low number of research participants reporting a transgender, queer,or other identity means that further research is needed to explore their specific perspectives and experiences. Key findings for LGB people include:
- Lesbian, gay and bisexual (LGB) people are more likely than heterosexual people to say being surrounded by friends would be a top-three priority at the end of their lives. Just under half of gay men say this would be a top-three priority in their final year of life (46%) compared to less than one in four heterosexual people (23%).
- LGB people are less likely than heterosexual people to prioritise being surrounded by family at the end of life. Just over half (56%) of LGB people say family would be a top-three priority, compared to four out of five (81%) heterosexual people. Similar results are found for priorities in the final year of life.
- LGB people are less likely than heterosexual people to prioritise being free of pain and other symptoms during the end of life. On average, about two out of five (38%) LGB people say this would be a top-three priority, compared to three out of five (60%) heterosexual people. Similar results are found for priorities in the final year of life.
- Gay men are more than three times more likely than heterosexual people to say having their cultural needs met would be in their top three priorities when rating needs for end of life care. Bisexual people are also twice as likely to prioritise cultural needs than heterosexual people.
Marie Curie supporter Jamie Windust comments “The research that Marie Curie has shared within this report highlights the importance, but also efficacy of bearing in mind the individual and nuanced differences that LGBT+ people face in all walks of life.
For me, the dignity and respect that the LGBT+ community desire when it comes to dying and end of life care is paramount, and the report highlights how often for us, our chosen family are the most important people in our lives.
Continuing this conversation around the cultural differences LGBT+ experiences when it comes to talking about dying and end of life care will hopefully ensure that more and more LGBT+ people will receive the love and respect they deserve during their final days.”
Caris Newson Superdrug’s Healthcare Director adds “We’ve partnered with Marie Curie for many years and we’re proud to support their continued work in understanding the needs of diverse communities at the end of people’s lives.
This report unfortunately highlights the continued challenges faced by LGB people and the changes now needed to their end of life care and support.”
Maria Novell Marie Curie’s Chief Fundraising, Marketing & Communications Officer adds “These findings make it clear that there is more to do to improve the caring experience of people from LGB communities and those they choose to have around them.
This is vital to tackle inequity in palliative care access and ensure that everyone gets the end of life care that is right for them.
Marie Curie will be incorporating these findings into our staff diversity training and hope that these recommendations help other health and social care providers understand more about what is important to people from LGB communities.”
Clare Beloved’s wife Sandra was cared for at the Marie Curie Hospice Liverpool prior to her death in August 2021. Clare shares:
“Sandra and I both felt immediately at ease, welcomed and loved by Marie Curie hospice staff. We were accepted, respected and celebrated as a married lesbian couple. At no point did I feel anything but heard and looked after. Sandra was really happy to see the rainbow pin on the nurses’ lapels, and the rainbow lanyard around their necks. It made her feel like she could talk openly about her life, our love and relationship. That’s immeasurably important at someone’s end of life – to feel they can be who they are.
“But sadly this isn’t the case for everyone at end of life. Sandra and I both had experiences where we had to correct people in healthcare settings who assumed things. People have assumed I’m straight and then made a huge thing about correcting it and over-apologising. Often forms in healthcare settings are totally out of date and exclude the non-binary community. Systemic change is needed.”
To access the complete “We don’t talk about dying” report, click www.mariecurie.org.uk/superdrug-lgbtq-report
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About Marie Curie’s and Superdrug partnership
Marie Curie’s long standing partnership with Superdrug aims to address the shortcomings UK society faces in equitable access to care and this important piece of research will help inform not only the work undertaken by Marie Curie, but in turn the many health and social care providers across the UK. Only by fully understanding the needs of diverse communities will the biggest difference be made to the final months, weeks, days, and hours of people’s lives.
About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides essential nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.
Please note we are ‘Marie Curie’ (not ‘Marie Curie Cancer Care’)
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