We would not walk away from a man being attacked by a monster, and if we couldn’t get the ravening beast off him we might well conclude that some instant means of less painful death would be preferable before the monster ate him alive.
And certainly we wouldn’t tuck it up in bed with him and try to carry on the fight from there, which is a pretty good metaphor for what we do now, particularly with “old-timer’s disease.” (My speech-to-text program persists in transcribing “Alzheimer’s” as “old-timers.” In fact, I’ve heard many people absent-mindedly doing the same thing, and as a writer, I cannot help wondering if the perception of the disease might be a little kinder without that sharp, Germanic intonation.)
My father was a man well tuned to the public consciousness. The day before he was diagnosed with pancreatic cancer he told me: “If you ever see me in a hospital bed with tubes and pipes all over me, then tell them to turn me off.”
There was no chance of that a year later, when medicine’s defences had been used up and he was becoming a battleground between the cancer and the morphine.
I have no idea what might have been going through his head, but why did we have to go through with this? He had been told he had a year to live, the year was up, and he was a practical man; he knew why he had been taken to the hospice.
Why could we not have had the Victorian finale, perhaps just a week or so earlier, with time for words of love and good advice, and tears just before the end?
It would have made something human and understandable out of what instead became surreal. It was not the fault of the staff; they were, like us, prisoners of a system.
At least my father’s problem was pain, and pain can be controlled right until the end.
But I do not know how you control a sense of loss and the slow slipping of the mind away from the living body—the kind that old-timer’s disease causes.
I know my father was the sort of man who didn’t make a fuss, and perhaps I would not, either, if pain were the only issue for me. But it isn’t.
I am enjoying my life to the full, and hope to continue for quite some time. But I also intend, before the endgame looms, to die sitting in a chair in my own garden with a glass of brandy in my hand and Thomas Tallis on the iPod—the latter because Thomas’s music could lift even an atheist a little bit closer to heaven—and perhaps a second brandy if there is time.
Oh, and since this is England I had better add: “If wet, in the library.”
Who could say that is bad? Where is the evil here?
But, of course, important points are being made in this debate. Currently, people say they are worried about the possibility of old people being “urged” by greedy relatives into taking an early death.
If we cannot come up with a means of identifying this, I would be very surprised.
In any case, in my experience it is pretty impossible to get an elderly person to do something they do not wish to do. They tend to know their own mind like the back of their hand, and quite probably would object to this being questioned.
There needs to be, for the safety of all concerned, some kind of gentle tribunal, to make certain that requests for assisted death are bona fide and not perhaps due to gentle persuasion.
It is the sort of thing, in my opinion, coroners could handle well. All the ones I have met have been former lawyers with much experience of the world and of the ways of human nature, people with wisdom, in fact, and that means middle-aged at the very least, and old enough to have some grasp of the world’s realities.
I have no way of knowing whether any of them would wish to be involved; this is breaking new ground and we won’t know unless we try.
In my early journalistic years, I watched such men deal with the deaths of thalidomide babies and the results of terrible accidents with calm and compassion. If their successors are as caring in their deliberations, I feel this may go some way to meeting the objections that people have.
And I would suggest, too, that Social Services be kept well away from any such arrangement. I don’t think they would have much to offer.
In this country we have rather lost faith in the wisdom of ordinary people, among whom my father was a shining example. And it is ordinary people, ultimately, who must make such decisions.
There are those who will object that the care industry can cope. Even if we accept that they are coping now, which most of us will take on trust, in the coming decades they certainly will not be able to without a major reordering of our society.
The numbers tell us this. We already have a situation where elderly people are being cared for at home by people who themselves are of pensionable age. The health care system will become messy, and the NHS will struggle to cope.
There are care homes, of course, and they are subject to inspection, and we must take it on trust that the inspection system has teeth, but would you know how to choose one? Would you know what questions to ask?
Would you know, if you suffer from Alzheimer’s disease or are representing someone who is, whether the place you would be choosing resorts to “peg feeding”?
Peg feeding is the forcible feeding of patients who refuse food. I found out about this only recently, and I’m afraid it has entirely coloured my views. These are, after all, innocent people who are on the road to death, and yet someone thinks it is right to subject them to this degrading and painful business.
The Alzheimer’s Society says peg feeding is “not best practice,” a rather diplomatic statement. People there that I trust tell me the main problem with the treatment of acute Alzheimer’s cases is not a lack of care and goodwill as such, but insufficient numbers of people who are skilled in the special needs of the terminally ill Alzheimer’s patient.
I am certain no one sets out to be cruel, but our treatment of the elderly ill seems to have no philosophy to it.
As a society, we should establish whether we have a policy of “life at any cost.” Apparently there is already such a thing as an official “quality of life index”; I don’t know whether the fact that we have one frightens me more than the possibility that we don’t.
In the first book of my Discworld series, published more than twenty-six years ago, I introduced Death as a character; there was nothing particularly new about this—death has featured in art and literature since medieval times, and for centuries we have had a fascination with the Grim Reaper.
But the Death of the Discworld is a little more unusual. He has become popular—after all, as he patiently explains, it is not he who kills. Guns and knives and starvation kill; Death turns up afterwards, to reassure the puzzled arrivals as they begin their journey.