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LGBTJune 15 2016

LGBT people are concerned about the quality of end of life care they may receive with carers displaying prejudice or discrimination.

Significant fears include that “service providers and health and social care professionals will be indifferent to their sexuality and gender identity, or, at worst, actively hostile. They worry that palliative and end of life care services are simply ‘not for them’, or that they will receive worse treatment than their straight peers.”

The comments are made in a new report, ‘Hiding who I am - the reality of end of life care for LGBT people’. It has been prepared by Marie Curie in partnership with the Kings Fund and the University of Nottingham.

The report says that “these fears are not unwarranted,” and that LGBT people have experienced real barriers in trying to access high-quality palliative and end of care life.

Specific concerns identified in the report include: 

• LGBT people access palliative care services late or not at all, either because they anticipate stigma or discrimination or they think the service is not for them;
• anecdotal evidence suggests that palliative and end of life care services may not always ensure LGBT patients and their families have the same spiritual needs addressed at end of life as any other patient;
• health and social care staff often make assumptions about people’s sexuality or gender identity that have an impact on their experience of palliative and end of life care;
• LGBT people can feel concerned that their loved ones will not be respected and recognised as next of kin.

Other factors which may contribute to the barriers in accessing palliative care are that LGBT people are three times more likely to be single, are less likely to have children, may feel more estranged from their birth family, and are more likely to have experienced damaging mental health problems.

Examples of care problems mentioned in the report include a doctor who would not treat a lesbian woman without a chaperone. The report also notes that coming out to each new health professional is also damaging, and such conversations can be overheard.

Dr Catherine Millington-Sanders, RCGP and Marie Curie Clinical Lead for End of Life Care, said: “GPs are highly trained to treat the whole person, and LGBT patients should feel assured that they will receive high quality palliative care to suit their needs, when they need it. But as this report shows, a concerning number of LGBT patients are not accessing the appropriate healthcare services as they near the end of their life for fear of discrimination – this unintended consequence is important as it means they are at risk of unmanaged symptoms and reduced ability to get the holistic care all patients and families deserve.”

The profession needs to address the issue “as a matter of urgency and ensure that all our patients feel comfortable accessing healthcare, and getting the message out that when they do, their holistic needs will acknowledged and treated in a sensitive and non-judgemental way.” It is hoped that some of the additional funding being provided under the GP Forward View initiative “will be put towards improving the care provided to our patients nearing or at the end of their life.”

Tracey Bleakley, Chief Executive of national hospice care charity Hospice UK, added: “It is concerning that many LGBT people living with a terminal illness are either delaying seeking the care they need, or missing out completely. Everyone approaching the end of life in the UK, no matter who they are, should receive high quality care. This report is a wake-up call to care providers to tackle discrimination, whether ingrained in their practices, or inadvertently part of organisational culture.

“Some hospices are working to make their services more inclusive and better attuned to the needs of LGBT people but we know that much more needs to be done to break down barriers. Hospice UK is committed to supporting hospices to make sure that everyone gets access to the best available care and support at the end of their lives.”

LGBT Hiding

Links:

Marie Curie announcement

Marie Curie report ‘Hiding who I am - The reality of end of life care for LGBT people’

RCGP response

Hospice UK response

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