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“Hiding who I am”: The reality of end of life care for LGBT people

Everyone should have the right to high-quality palliative care when they have a terminal illness, regardless of their condition, where they live, or their personal circumstances. The UK has been ranked as the best country in the world for the quality of palliative care on offer here. However, access to this care is patchy. One in four people who need palliative care miss out each year.

LGBT people experience significant barriers to getting palliative care when they need it. This report explores why.

It shows that many older LGBT people have significant fears about palliative and end of life care services. They are concerned 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.

These fears are not unwarranted. This report highlights real barriers that LGBT people have experienced in trying to access high-quality palliative and end of life care. These range from outright discrimination, such as a doctor who would not treat a lesbian woman without a chaperone, to more commonplace, but no less damaging issues, such as the experience of having to come out to each new healthcare professional encountered.

The end of someone’s life is a time of significant vulnerability, both for the person who is dying and the family they choose to have around them. Service providers and health and social care professionals can do significant and long-lasting damage to people by being insensitive or actively hostile to people’s sexuality or gender identity at this time.

Not all the stories in this report are of bad care. There are some examples where people get it right. But these tend to be in the minority. As is often the case in palliative and end of life care, the question is how to take pockets of good practice and make them universal across the health and social care system. This must happen sooner rather than later – as our population ages and the overall need for palliative care grows, there will also be rising expectations among LGBT people of person-centred care that acknowledges and supports them in their last months, weeks and days.

Marie Curie is dedicated to making sure that LGBT people who have a terminal illness experience the best palliative and end of life care possible, alongside the family they choose to have around them.

This means a commitment going forward to deliver person-centred care of the highest quality for LGBT people. We want everyone who receives our care to feel safe and have the best possible experience. Palliative care is for everyone.