First resource of its kind informs LGBT people of their rights and choices for future care and treatment

A new publication designed to support LGBT people to plan ahead for their future treatment and care is launching today – the first of its kind in the UK. The booklet, produced by Compassion in Dying in collaboration with Opening Doors London and with thanks to Stonewall, is the first ever resource designed specifically for the LGBT community on this subject.

The publication, ‘Your treatment and care: Planning ahead for the LGBT community’, explains the benefits of planning ahead for a time when you may be unable to make or communicate decisions about your own care and treatment, whether through illness or accident. Research has found that people who plan ahead like this are more likely to have a good death than those who do not1.

Usha Grieve, Director of Partnerships and Information at Compassion in Dying, said:

“We know through our work with organisations who support older LGBT people and through reports from the Care Quality Commission and Marie Curie earlier this year, that the LGBT community can face specific and significant barriers stopping them from getting the end-of-life care they want. This can include healthcare professionals making assumptions about their preferences for care and a lack of understanding about what or who is important to them.

“That’s why we have produced this booklet. Planning ahead by making an Advance Decision, an Advance Statement or appointing a Lasting Power of Attorney (LPA) for Health and Welfare lets people responsible for your care know what and who is important to you and helps to ensure that your wishes are followed if you become unwell and are unable to express them yourself.”

Brian Baylis from London was the primary carer for his friend Tim, a gay man, for ten years following a diagnosis of dementia. Despite this, and having had a close friendship for forty years, Brian was shut out of conversations about Tim’s end-of-life care and decisions were left up to his estranged family.

Brian explained:

“While Tim was living in a nursing home, a representative from Tim’s family suddenly made contact with social services, and from then on, at the family’s direction, I was excluded from participation in all aspects of Tim’s financial and medical care. All that remained was for me to visit Tim, which I did on average four times weekly and, when things were very bad, every day. To the end I remained Tim’s only regular visitor.

“The final indignity came on the day of Tim’s death. By the time I got to the hospital his body had been removed from the mortuary by the family, who had also removed all his possessions from his room. When I contacted the family representative, she said that it would not be possible to visit Tim’s body or attend his funeral.”

Usha Grieve added:

“What happened in Tim and Brian’s case was tragic. Tim had unfortunately not appointed Brian as his lasting power of attorney or expressed his wishes in an Advance Decision or Advance Statement, so best interest decisions about his care and treatment were left to people he had not had contact with for years.

“While 82% of us have strong feelings about how we’d like to be treated at the end of life, just 4% have actually planned ahead and expressed our wishes in a legally binding way2. We hope this pioneering resource will inform and empower the LGBT community to do so, helping to ensure that everyone gets the end-of-life care that’s right for them.”

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For media enquiries, please contact Ellie Ball on ellie.ball@compassionindying.org.uk / 02074797723 / 07725433025

Notes to Editor

‘Your treatment and care: planning ahead for the LGBT community’ can be viewed online, downloaded or ordered in hard copy here.

1 Compassion in Dying YouGov poll, 2015

2 Compassion in Dying YouGov poll, 2014

Compassion in Dying
Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their legal rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.