A Slip of the Keyboard (36 page)

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.

Back in my early reporting days I was told something that surprised me at the time: nobody has to do what the doctor tells them. I learned this when the chief reporter, George Topley, slung my copy back at me and said, “Never say that a patient has been released from hospital unless you are talking about someone who is being detained on mental grounds. The proper word is ‘discharged,’ and even though the staff would like you to believe that you just can’t walk out until they say so, you damn well can. Although, generally speaking, it’s best not to be dragging a portable life support system down the steps with you.” George was a remarkable journalist who as a fiery young man would have fought fascism in the Spanish
Civil War were it not for the fact that he stowed away on the wrong boat and ended up in Hull.

And I remembered what George said and vowed that rather than let Alzheimer’s take me, I would take it. I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the “Brompton cocktail” (a potent mixture of painkillers and brandy) some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with Death.

I have made my position publicly clear; it seems to me quite a reasonable and sensible decision, for someone with a serious, incurable, and debilitating disease to elect for a medically assisted death by appointment.

These days nontraumatic deaths—not the best word, but you will know what I mean—which is to say, deaths that don’t, for example, involve several cars, a tanker, and a patch of ice on the M4—largely take place in hospitals and hospices. Not so long ago death took place in your own bed. The Victorians knew how to die. They saw a lot of death. And Victorian and Edwardian London was awash with what we would call recreational drugs, which were seen as a boon and a blessing to all. Departing on schedule with the help of a friendly doctor was quite usual and there is every reason to believe that the medical profession considered that part of its duty was to help the stricken patient on their way.

Does that still apply? It would seem so. Did the Victorians fear death? As Death says in one of my own books, most men don’t fear death, they fear those things—the knife, the shipwreck, the illness, the bomb—which precede, by microseconds if you’re lucky, and many years if you’re not, the moment of death.

And this brings us into the whole care or killing argument.

The Care Not Killing Alliance, as they phrase themselves, assure us that no one need consider a voluntary death of any sort since care
is always available. This is questionable. Medicine is keeping more and more people alive, all requiring more and more care. Alzheimer’s and other dementias place a huge care burden on the country, a burden which falls initially on the next of kin who may even be elderly and, indeed, be in need of some sort of care themselves. The number is climbing as the baby boomers get older, but in addition the percentage of cases of dementia among the population is also growing. We then have to consider the quality of whatever care there may be, not just for dementia but for all long-term conditions. I will not go into the horror stories, this is not the place and maybe I should leave the field open to Sir Michael Parkinson, who as the government’s dignity ambassador, describes incidents that are, and I quote, “absolutely barmy and cruel beyond belief” and care homes as little more than “waiting rooms for death.”

It appears that care is a lottery and there are those of us who don’t wish to be cared for and who do not want to spend their time in anyone’s waiting room, who want to have the right not to do what you are told by a nurse, not to obey the doctor. A right, in my case, to demand here and now the power of attorney over the fate of the Terry Pratchett that, at some future date, I will become. People exercise themselves in wondering what their nearest and dearest would really want. Well, my nearest and dearest know. So do you.

A major objection frequently flourished by opponents of “assisted dying” is that elderly people might be illegally persuaded into “asking” for assisted death. Could be, but the
Journal of Medical Ethics
reported in 2007 that there was no evidence of abuse of vulnerable patients in Oregon where assisted dying is currently legal. I don’t see why things should be any different here. I’m sure nobody considers death flippantly; the idea that people would persuade themselves to die just because some hypothetical Acme One-Stop Death shop has opened down the road is fantastical. But I can easily envisage that a person, elderly or otherwise, weighed down
with medical problems and understandably fearful of the future, and dreading what is hopefully called care, might consider the “Victorian-style” death, gently assisted by a medical professional, at home, a more dignified way to go.

Last year, the government finally published guidelines on dealing with assisted death. They did not appear to satisfy anybody. It seems that those wishing to assist a friend or relative to die would have to meet quite a large number of criteria in order to escape the chance of prosecution for murder. We should be thankful that some possibility that they might not be prosecuted is in theory possible, but as laid out, the best anyone can do is keep within the rules and hope for the best.

That’s why I and others have suggested some kind of strictly nonaggressive tribunal that would establish the facts of the case well before the assisted death takes place. This might make some people, including me, a little uneasy as it suggests the government has the power to tell you whether you can live or die. But that said, the government cannot sidestep the responsibility to ensure the protection of the vulnerable and we must respect that. It grieves me that those against assisted death seem to assume, as a matter of course, that those of us who support it have not thought long and hard about this very issue and know that it is of fundamental importance. It is, in fact, at the soul and centre of my argument.

The members of the tribunal would be acting for the good of society as well as that of the applicant, horrible word, and ensure they are of sound and informed mind, firm in their purpose, suffering from a life-threatening and incurable disease, and not under the influence of a third party. It would need wiser heads than mine, though heaven knows they should be easy enough to find, to determine how such tribunals are constituted. But I would suggest there should be a lawyer, one with expertise in dynastic family affairs who has become good at recognizing what somebody really means and, indeed, whether there is outside pressure. And a medical
practitioner experienced in dealing with the complexities of serious long-term illnesses.

Those opposing “assisted death” say that the vulnerable must be protected, as if that would not have occurred to anyone else. As a matter of fact there is no evidence—and evidence has been sought—of the sick or elderly being cajoled into assisted death by relatives anywhere in the world where assisted dying is practised, and I see no reason why that would be the case here. Doctors tell me that, to the contrary, family members more often beg them to keep Granny alive even when Granny is indeed, by all medical standards, at the end of her natural life. Importantly, the tribunal would also serve to prevent, as far as humanly possible, any abuses.

I would also suggest that all those on the tribunal are over forty-five years old, by which time they may have acquired the rare gift of wisdom, because wisdom and compassion should in this tribunal stand side by side with the law. The tribunal would also have to be a check on those seeking death for reasons that reasonable people may consider trivial or transient distress. I dare say that quite a few people have contemplated death for reasons that much later seemed to them to be quite minor. If we are to live in a world where a socially acceptable “early death” can be allowed, it must be allowed as a result of careful consideration.

Let us consider me as a test case. As I have said, I would like to die peacefully with Thomas Tallis on my iPod before the disease takes me over and I hope that will not be for quite some time to come, because if I knew that I could die at any time I wanted, then suddenly every day would be as precious as a million pounds. If I knew that I could die, I would live. My life, my death, my choice.

There has been no evidence in those areas where assisted dying is currently practised that it leads to any kind of “slippery slope.” It seems to be an item of faith among those opposed to assisted dying that it will open the door to abuses all the way up to the culling of the
elderly sick. This is a nightmare and only a nightmare. This cannot be envisaged in any democracy unless we find ourselves under a tyranny, that is to say a tyranny that is far more aggressive than the mild one currently operated by the Health and Safety Executive. Frankly, that objection is a bogeyman.

It has been suggested that people would not trust their doctor if they knew that he or she had the power to kill them. Why should this be? A doctor has an awful lot to lose by killing a patient. Indeed, it seems to me that asking a medical practitioner who is fully aware of your situation to bring your life to an end is placing the utmost trust in them.

The saying “Thou shall not kill; but needst not strive officiously to keep alive” has never been formal advice to the medical profession. Given that it was made up by Arthur Hugh Clough, who was in a similar profession to me, that is not surprising. But, ever since the birth of medicine, doctors have understood its meaning. They have striven, oh how they have striven. In the past two centuries we have improved the length of our lives and the quality of said lives to the point where we feel somewhat uneasy if anyone dies as early as the biblical age of seventy. But there comes a time when technology outpaces sense, when a blip on an oscilloscope is confused with life, and humanity unravels into a state of mere existence.