But most of all in the last couple of years I have been listening. As a journalist, I learned to listen. It is amazing how much people will tell you if you listen in the right way. Rob, my PA, says that I can listen like a vacuum cleaner. Always beware of somebody who is a really good listener.
I have heard it said that some people feel that they are being avoided once the news gets around that they have Alzheimer’s. For me it has been just the reverse. People want to talk to me, on city streets, in theatre queues, on aeroplanes over the Atlantic, even on country walks. They want to tell me about their mother, their husband, their grandmother. Sometimes it is clear to me that they are extremely frightened. And increasingly, they want to talk about what I prefer to call “assisted death,” but which is still called, wrongly in my opinion, “assisted suicide.”
I will digress slightly at this point to talk about the baggage that words carry. Let us start with suicide. As a pallid and nervous young journalist I got to know about suicide. Oh, didn’t I just. It was part of my regular tasks to sit in at the coroner’s court, where I learned all the manifold ways the disturbed human brain can devise to die. High bridges and trains were, I suspect, the most traumatic instruments for all concerned, especially those who had to deal with the aftermath. Newspapers were a little more kindly in those days, and we tended not to go into too much detail, but I had to listen to it. And I remember that coroners never used the word insanity. They preferred the more compassionate verdict that the subject had “taken his life while the balance of his mind was disturbed.” There was ambivalence to the phrase, a suggestion of the winds of fate and overwhelming circumstance. No need to go into the horrible details that the coroner’s officer, always a policeman, mentioned to me after the case. In fact, by now, I have reached the conclusion that a person may make a decision to die because the balance of their mind is level, realistic, pragmatic, stoic, and sharp. And that is why I dislike the term “assisted suicide” applied to the carefully thought out and weighed up process of having one’s life ended by gentle medical means.
The people who thus far have made the harrowing trip to Dignitas in Switzerland to die seemed to me to be very firm and methodical of purpose, with a clear prima facie case for wanting their death to be on their own terms. In short, their mind may well be in better balance than the world around them.
I’ll return again to my father’s request to me, that I was unable to fulfil. In the course of the past year or so I have talked amiably about the issues of assisted dying to people of all sorts, because they have broached the subject. A lot of them get nervy about the term “assisted death” and seriously nervous about “assisted suicide,” but when I mention my father’s mantra about (not wishing to go on living supported by) the pipes and tubes they brighten up and say, “Oh, yes, I don’t have any problem with that.” That was the problem reduced from a sterile title into the wishes of a real person in whom, perhaps, they could see themselves.
When I began to draft this speech, the so-called debate on assisted dying was like a snowball fight in the dark. Now, it seems to be occupying so much space in the media that I wonder whether it is something in the air, an idea whose time is really coming. Very recently an impassioned outburst by Martin Amis in an interview he gave to the Sunday Times called for euthanasia booths on every street corner. I firmly believe it was there to trap the hard of irony, and I note that it has done so—he was, after all, a novelist talking about a new book. Did it get publicity? It surely did. Apart from being tasteless, the idea is impractical, especially if there happens to be a photo booth next door. But his anger and grief at the way elderly relatives, friends, and colleagues have died is clearly genuine and shared by a great many. The postwar generation has seen what’s happened to their elders and are determined that it should not happen to them.
Even more recently, the British Social Attitudes Survey found that 71 percent of religious people and 92 percent of nonreligious people were in favour of medically assisted dying for patients with incurable illnesses if they should request it.
Insofar as there are sides in this debate, they tend to polarize around the Dignity in Dying organization, who favour assisted death in special circumstances, and the Care Not Killing Alliance whose position, in a nutshell, appears to be that care will cope.
And once again I remember my father. He did not want to die a curious kind of living death. He wasn’t that kind of person. He wanted to say good-bye to me, and, knowing him, he would probably have finished with a joke of some sort. And if the nurses had put the relevant syringe in the cannula, I would have pressed it, and felt it was my duty. There would have been tears, of course there would: tears would be appropriate and unsuppressable.
But of course, this did not happen because I, my father, and the nurses were locked in the aspic of the law. But he actually had a good death in the arms of morphia and I envy him.
I got involved in the debate surrounding “assisted death” by accident after taking a long and, yes, informed look at my future as someone with Alzheimer’s and subsequently writing an article about my conclusions. As a result of my “coming out” about the disease I now have contacts in medical research industries all over the world, and I have no reason to believe that a “cure” is imminent. I do think, on their good advice, that there may be some very interesting developments in the next couple of years and I’m not the only one to hope for some kind of “stepping-stone”—a treatment that will keep me going long enough for a better treatment to be developed.
I said earlier that PCA at the endgame is effectively the same as Alzheimer’s and that it is the most feared disease among the elderly. I was diagnosed when I was fifty-nine, but it has struck adults in their thirties. I enjoy my life, and wish to continue it for as long as I am still myself, knowing who I am and recognizing my nearest and dearest. But I know enough about the endgame to be fearful of it, despite the fact that as a wealthy man I could probably shield myself from the worst; even the wealthy, whatever they may do, have their appointment in Samarra. For younger members of the audience, I should say that the fable “Appointment in Samarra” is probably one of the oldest stories in the world and has been recast many times; its central point is that you can run and you can hide, but every man has his inevitable appointment with death. It’s worth a google.