If you teach death and commemoration, it’s a very strange experience caring for someone through the end of life. My mother – 99, brain like a steel trap but everything physical is failing – has decided to move to palliative care. She’s at home with us (she has lived in a granny flat attached to our house for some years) and we are nursing her with the help of district nurses, occupational therapists, private carers and some wonderful, underpaid, overworked, wonderful young women from a care agency via Social Services. Here in Wales we have good support in nursing the elderly in their own homes (Jeremy Hunt, please note – we spend our money keeping our old people OUT of hospital!) but as she has gone down hill more of my own time and emotional energy has been involved with her.
A week or so ago we had a couple of those very difficult conversations where she explained that she felt she obviously wasn’t going to get any better, she was afraid of the point where she became bedridden and could no longer manage her own body, and she wondered what she could do. She is of course at the point where virtually everything has to be done for her, and she didn’t want me to do anything I could be prosecuted for. We talked through options like leaving the top off the emergency bottle of Oramorph and putting it where she could reach it, but she wasn’t sure she could manage to take it. She admitted she no longer wanted to eat, so I said ‘Well, don’t’. So she has gradually stopped eating, and after talking it through with the doctor she has stopped taking the medication that was propping her up. It has been a very difficult process for her, because she’s always been independent and knows exactly how she wants things done. All the family now want to come to visit and she has found it virtually impossible to let go instead of keeping strong so that she can entertain them properly.
I’ve been surprised by how common her experience is and how much help and support is available. When I told the doctor she had decided to stop eating he went immediately into end-of-life care mode and even had all the relevant paperwork. Several of her carers have also said they’ve looked after people through similar decisions. Ironically this has all happened during the parliamentary debates over assisted dying and the reviews of Atul Gawande’s book (http://www.theguardian.com/books/2014/oct/22/being-mortal-medicine-what-matters-atul-gawande-review for the Guardian review). I’ve come across the idea of giving up eating as a way of hastening the end of life but newspaper reports always present it as an extreme and terrible thing to do, starving oneself to death. In fact, for a lot of people, on heavy medication for things like arthritic pain, eating becomes a struggle and it’s almost easier to give up. There are medieval parallels as well – the endura of the Cathars, the belief in the western Catholic tradition that after receiving the last rites you had to turn your back on life. The much-maligned (and much misunderstood – both by the media and by some of the people tasked with implementing it) Liverpool Pathway is actually nothing new. What we need now is to be able to talk more openly about these issues and how they can be managed. We might then be able to move gradually to a position where more could be done in the way of sedation and pain relief even if it shortened life. We have already moved on a long way since my father’s death of cancer in 1970. He died in dreadful pain with the doctors unwilling to give him enough morphine in case it damaged his health. Really … with his bones rotting under him … things are better now and they could get better again without actually confronting the difficult prospect of assisted dying.
My mother had an amazing life. I have to remind people that when this intelligent and capable woman was born in 1915, women didn’t have the vote in parliamentary elections. She was in her teens before women had the vote on the same terms as men. Her generation weren’t the absolute pioneers – more importantly, they were the wome who made good what the pioneers had achieved and made it the norm. So they were the women who insisted on the right to a grammar school education, a University degree, a profession, the right to remain in that profession after marriage, the right to return to work after having children, all those things we value but perhaps too much take for granted.
Her reminiscences of her upbringing on a farm between Newport and Cardiff, her education and her life as a teacher in Chepstow in WWII are a remarkable document. They first appeared in the Gwent County History Association’s newsletter and used to be on the Association’s web site but they seem to have vanished (probably yet another consequence of the merger) so here they are again.