End of life care for LGBT people

I’ve been at a seminar on End of Life Care for LGBT people today, mostly focusing on older people, although with briefer mention of younger people who are also coming to the end of their lives.

I’m no specialist in end of life issues, although I know a bit because of knowing about later life, which is when end of life issues come up for most people. I went along partly out of guilt because one of the organisers had asked me for help with recruiting older bi people to attend and I had tried but (as far as I know) failed.

(cc 19melissa68)

We started by going round the table, saying what our particular interests were in later life and why we were there. At the beginning of that process someone said ‘same sex partners’ as if that was a common experience to all of us and I prepared to start banging the bi and trans drum of ‘same sex partners does not cover us all, all of the time’. But then someone said how important it was to include trans issues in our discussions and gave some examples of how and why. And then someone else said that they particularly wanted to include bi issues because they are bi. And then someone else mentioned bi stuff again, and someone else trans and, really, by the time it came round to me, I felt almost redundant. Which was very nice indeed, and very encouraging. We also had some good discussion of particular issues for LGBT people of colour and people who have been living with HIV for decades.

Someone other than me was talking about the importance of separating out data from bi people from data from lesbians and gay men, which was very encouraging in terms of the likely reception of BiUK (and friends)’s forthcoming The Bisexuality Report (watch this space) which is going to argue just that.

I was delighted to hear that Age of Diversity, which is the successor organisation to Polari, are going to launch their website next month (it’s still in construction at the moment, but you can find it by googling).

There was quite a lot of discussion of the issue of people using a different name than their official name and the difficulties and distress this creates when someone is not fully compos mentis, or when their friends ring the hospital to ask after them but don’t know their legal name. I don’t know whether using a name other than your legal one is particularly common in the LGB community (I know it is in the trans community). I can imagine that it might be, but to me it feels an entirely standard issue in later life because, I now realise, 3 out of my 4 grandparents/pseudo-grandparents went by a middle name, so it’s an old chestnut to me (but none the less important).

People also talked about the importance of debunking the notion and scrapping the phrase ‘next-of-kin’. It has no legal meaning when someone is alive, only once they are dead, and it’s one of the main routes by which LGBT people do not get to have their nearest and dearest involved in their care. Lots of (sadly familiar to me) stories of estranged family turning up and making decisions for someone they had not seen for twenty years, while their partner or close friend is shut out.

I loved a passing comment made by a hospice chaplain when introducing himself and his organisation ‘we’re lovely. In fact, like most hospice people, you could say we’re terminally nice’.

One of the outcomes of the meeting was that the organisers are going to collect together useful resources on this topic. I’ll post the link for that once I know it. But for now, a few resources that I managed to jot down:

• REGARD (organisation for LGBT disabled people) and their campaign for ‘Sue’s Law’ (if you just search for ‘Regard and Sue’s Law you should find it)
• Kathy Allmack published a lit review on End of Life Care for LGBT people about three years ago
• NHS (don’t know which bit) has apparently just produced a guide on bereavement for (re?) trans people.
• Report on palliative care for LGBT people: National Council for Palliative Care (2011) Open to all?, NCPC and Consortium of LGBT voluntary and community organisations, London ISBN 978-1-898915-89-8
• Opening Doors Camden (part of Age UK) is launching a checklist for care homes and care providers on practical ways to be LGBT friendly. Out next week, should be available as a pdf on their website.