A Slip of the Keyboard (34 page)

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.

He is kind; after all, he is an angel. And he is fascinated with us, with the way in which we make our little lives so complicated, and our strivings. So am I.

Within a year or two, I started to get letters about Death. They came from people in hospices, and from their relatives and from bereaved individuals, and from young children in leukaemia wards, and the parents of boys who had crashed their motorbikes.

I recall one letter where the writer said the books were of great help to his mother when she was in a hospice. Frequently, the bereaved asked to be allowed to quote some part of the Discworld books in a memorial service.

They all tried to say, in some way, “thank you,” and until I got used to it, the arrival of one of these letters would move me sufficiently to give up writing for the day.

The bravest person I’ve ever met was a young boy going through massive amounts of treatment for a very rare, complex and unpleasant disease. I last saw him at a Discworld convention, where he chose to take part in a game as an assassin. He died not long afterwards, and I wish I had his fortitude and sense of style.

I would like to think my refusal to go into care towards the end of my life might free up the resources for people such as him.

Let me make this very clear: I do not believe there is any such thing as a “duty to die”; we should treasure great age as the tangible presence of the past, and honour it as such.

I know that last September Baroness Warnock was quoted, or possibly misquoted, as saying the very elderly sick had a “duty to die,” and I have seen people profess to fear that the existence of a formalized approach to assisted dying could lead to it somehow becoming part of national health policy.

I very much doubt this could be the case. We are a democracy and no democratic government is going to get anywhere with a policy of compulsory or even recommended euthanasia. If we were ever to end up with such a government, we would be in so much trouble that the problem would become the least of our worries.

But neither do I believe in a duty to suffer the worst ravages of terminal illness.

As an author, I’ve always tended to be known only to a circle of people—quite a large one, I must admit—who read books. I was not prepared for what happened after I “came out” about having Alzheimer’s in December 2007, and appeared on television.

People would stop me in the street to tell me their mother had it, or their father had it. Sometimes, it’s both parents, and I look into their eyes and I see a flash of fear.

In London the other day, a beefy man grabbed my arm, smiled at me, and said, “Thanks a lot for what you’re doing, my mum died from it,” and disappeared into the crowd.

And, of course, there have been the vast numbers of letters and e-mails, some of which, I’m ashamed to say, will perhaps never be answered.

People do fear, and not because fear is whipped up, but because they’ve recalled an unpleasant death in their family history.

Sometimes I find myself involved in strange conversations, because I am an amiable-looking person who people think they know and, importantly, I am not an authority figure—quite the reverse.

I have met Alzheimer’s sufferers who are hoping that another illness takes them away first. Little old ladies confide in me, saying: “I’ve been saving up my pills for the end, dear.”

What they are doing, in fact, is buying themselves a feeling of control. I have met retired nurses who have made their own provisions for the future with rather more knowledgeable deliberation.

From personal experience, I believe the recent poll reflects the views of the people in this country. They don’t dread death; it’s what happens beforehand that worries them.

Life is easy and cheap to make. But the things we add to it, such as pride, self-respect, and human dignity, are worthy of preservation, too, and these can be lost in a fetish for life at any cost.

I believe that if the burden gets too great, those who wish to should be allowed to be shown the door.

In my case, in the fullness of time, I hope it will be the one to the garden under an English sky. Or, if wet, the library.

Royal Society of Medicine, 1 February 2010 Broadcast on BBC1, with revisions to indicate that Tony Robinson would be reading the main text
.

Firstly I must express my gratitude and grateful thanks to the Dimbleby family for asking me to give this lecture today.

I cherish what I suspect is at least part of their reason for inviting me. I was a young newspaper journalist, still learning his trade, when Richard Dimbleby died of cancer in late December 1965. Two pieces of information shook the nation: one was that he had died and the other was that his family said that he had died of cancer. At that time it was the disease whose name was unspoken. People died of “a long illness” and as journalists we accepted and connived at this furtive terminology. However, we all knew what it meant, yet nobody used the forbidden word. But overnight, people were talking about this, and as a result it seemed to me the war on cancer began in earnest. Before you can kill the monster you have to say its name.

It was the distant echo of that example that prompted me to stand up two years ago and reveal that I had a form of Alzheimer’s disease. I remembered the shameful despairing way cancer had been hidden in darkness. That and the Dimbleby family’s decision to be open about Richard’s death were at the soul and centre of my own decision, which I made because of the sheer impossibility of not doing so. It was not a decision in fact. It was a determination and a reckoning.

My name is Terry Pratchett and I am the author of a very large number of inexplicably popular fantasy novels.

Contrary to popular belief, fantasy is not about making things up. The world is stuffed full of things. It is almost impossible to invent any more. No, the role of fantasy as defined by G. K. Chesterton is to take what is normal and everyday and usual and unregarded, and turn it around and show it to the audience from a different direction, so that they look at it once again with new eyes.

I intend tonight to talk about Alzheimer’s disease, which I am glad to say is no longer in the twilight, but also about another once taboo subject, the nature of our relationship with death.

I have regrettably to point out that the nature of my disease may not allow me to read all the way through this lecture. If this is the case, we have arranged for my friend Tony Robinson, who made a very moving programme about his own mother’s struggle with dementia, to step in and be your stunt Terry Pratchett for the evening.

I’m sure you know that, for my sins, which I wish I could remember because they must have been crimson, I am effectively “Mr. Alzheimer’s” and I have given more interviews on the subject than I can remember. But there are others, less well known, who have various forms of dementia and go out and about being ambassadors for the Alzheimer’s Society in their fight against the wretched disease. It’s not just me, by a long way. They are unsung heroes and I salute them.

When I was a young boy, playing on the floor of my grandmother’s front room, I glanced up at the television and saw death, talking to a knight, and I didn’t know very much about death at that point. It was the thing that happened to budgerigars and hamsters. But it was Death, with a scythe and an amiable manner. I didn’t know it at the time, of course, but I had just watched a clip from Bergman’s
Seventh Seal
, wherein the Knight engages in protracted dialogue, and of course the famous chess game, with the Grim Reaper who, it seemed to me, did not seem so terribly grim.