I’m revisiting this post (from December 2010) today because I’ve just signed an open letter from Macmillan calling for the government to keep free end-of-life care at home as a priority.
If you’d like to do the same, you can click here. I’m sure a lot of people will thank you for it.
I think about dying more than I used to. Although I’m not sure what I actually think, when I think about dying. It’s a patchwork: hope for painlessness, fear of not being ready to go, and a fervent wish for grace under pressure. There’s a perfect balance in my wish for a death that I know nothing about – one moment I’m stepping out of a restaurant, the next I’m under a concrete block that fell from the sky, a shocked red stiletto knocked clear at the edge of the pavement – and one in which I get to tell everyone in my life how much I have loved and valued them and just how well they are going to do without me.
I hope that by the time I get around to dying I’ll be prepared, in myself, to do it. (If you’re reading, Mr. Reaper, I could pencil you in for the back end of 2067 but that’s about the earliest date I could manage.) Despite what Dylan Thomas has to say on the subject, I’d prefer to go gently. I’ve made my will, I’ve asked Alan to switch me off if it gets to the point where I’m not me any more, and I’ve chosen a song for my funeral. (This one.) I think I’m prepared. Or I did, until this morning.
I knew, of course, that I might not get to die in the time and place of my choosing. But what I learned, listening to Radio 4 as I put on my seventeenth layer of clothing in readiness for the day – it’s minus seven degrees outside here at the moment – is that many people in the UK die in hospital when they would rather be at home. An interim report on an independent review by Tom Hughes Hallett, head of Marie Curie Cancer Care, points out that because palliative care services have developed in a fairly ad-hoc way, it’s something of a lucky dip as to whether you die in hospital or at home, with good care or with services lacking. That’s bad.
I know that the NHS is stretched and I’m sure that individuals working in palliative care are doing all that they can. But reading this report has made me think about how much I have thought about my own death, and how thoroughly I have thought about what, for me, would be a good death. And the answer, is that I haven’t considered this question enough.
As I sit here on my sofa, happy and healthy, I am acknowledging that arrangements and agreements for end-of-life care need to be thought about here, now, today, exactly when I don’t think I need them. Given the choice, do I want to die at home? To what level do I want to be medicated? Who do I want to have near me? Who do I want to do any of the intimate and unpleasant care that goes with a fading body? Would I rather slip away alone or do the whole Dickens number, with everyone I ever knew standing around me, weeping quietly in their best black lace and wondering who’ll get the yarn stash?
Yes, the NHS needs to be better at across the board palliative care. But we, too, as individuals, need to be clear about our views and feelings. Then it will be easier for us to be cared for. It will be easier for us to have the death we want, and for the people who love us to remember the loss of us without the taint of an unnecessarily unhappy ending.