A Slip of the Keyboard

by Terry Pratchett

  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.

  Observation, conversation, and some careful deduction lead me to believe that the majority of doctors who support the right to die are those who are most closely involved day to day with patients, while support appears to tail off as you reach those heights where politics and medicine merge. It would be interesting to speculate how many doctors would “come out” were it not for the baleful glare of the BMA. Anyone who has any long-term friendships, acquaintances, or professional dealings within the medical profession, let alone knows anything about the social history of medicine, knows that down the ages doctors and nurses have seen it as part of their duty to allow those beyond hope and skill to depart in peace. I can recall the metaphors that have been used: “helping them over the step,” “showing them the way,” “helping them find the door,” “pointing them to heaven.” But never, ever “killing them,” because in their minds they were not killing and in their minds they were right.

  In fact, I have not found any reputable information from those places where assisted death is allowed that shows any deleterious effect on the community. I certainly do not expect or assume that every GP or hospital practitioner would be prepared to assist death by arrangement, even in the face of overwhelming medical evidence. That is their choice. Choice is very important in this matter. But there will be some, probably older, probably wiser, who will understand. It seems sensible to me that we should look to the medical profession, that over the centuries has helped us to live longer and healthier lives, to help us die peacefully among our loved ones in our own home without a long stay in God’s waiting room.

  And finally there is the God argument, which I think these days appears to have been subsumed into concern for the innocent that may suffer if assisted dying were allowed. The problem with the God argument is that it only works if you believe in God, more specifically, Jehovah, which I do not. Spinoza, Darwin, and Carl Sagan have found in my imagination places which God has never found. Therefore I am a humanist and would rather believe that we are a rising ape, not a falling angel. Nevertheless, I have a sneaking regard for the Church of England and those I disagree with. We should always debate ideas that appear to strike at the centre of our humanity. Ideas and proposals should be tested. I believe that consensual “assisted death” for those that ask for it is quite hard to oppose, especially by those that have some compassion. But we do need in this world people to remind us that we are all human, and that humanity is precious.

  It’s that much heralded thing the quality of life that is important. How you live your life, what you get out of it, what you put into it, and what you leave behind after it. We should aim for a good and rich life well lived, and at the end of it, in the comfort of our own home, in the company of those who love us, have a death worth dying for.

  AT LAST WE HAVE REAL COMPASSION IN ASSISTED-DYING GUIDELINES

  The DPP’s new guidelines are good. People, not the diseases, need to be in control

  The Times, 26 February 2010

  It’s a scene right out of Trading Places. We’re all waiting for the crop reports, although this turns out to be my fevered imagination, as I didn’t sleep much last night.

  We are watching the clock, waiting for Keir Starmer, director of Public Prosecutions, to formally present the new guidelines on assisted suicide. And then suddenly it’s eleven o’clock and we’re all in Millbank, where you can’t shake a stick without hitting two reporters, or three if you’re lucky.

  For Debbie Purdy and me, the race is on. We pass each other endlessly in lifts and in corridors. It’s like a high-tech slave auction. You stagger around from one TV interview to another and end up not remembering anything about it.

  We’re talking about assisted dying. I find out what I think by listening to what I say. And it seems to me that the guidelines presented are about as good as we can expect without a change in the law. I hated the provisional guidelines released in September last year. They seemed to be about ticking boxes. They seemed to be about bureaucracy.

  But the word compassion catches my eye. And as I read on, it seems to me that this streamlined policy is more about what goes through the hearts and minds of people than exactly which hoops to jump through. I might dare to believe that someone who, out of compassion and love, helps another human who is not physically able to do it themselves to leave behind an unbearable life, would have little to fear from the authorities.

  Nevertheless, I believe that a tribunal, proposed by me and others, should definitely come into existence through a change in the law. It would establish the facts of a case well before the assisted death takes place. But it is also vitally important that the limited freedoms suggested by these guidelines are not used to mask abuse. I believe it is essential that, for the safety of all concerned, the proposed actions and the reasons behind them are discussed in the nonaggressive atmosphere of the tribunal, which may advise, warn, or, should it be suspicious, refuse.

  The enlightened U.S. state of Oregon is one of three that at the
moment allow assisted suicide. In Oregon, after consultation with two doctors, the terminally ill patient is given a prescription that will end their life.

  But here is the interesting bit: 40 percent of those who have the prescription to hand die without using it. They’ve known that they can, and every day they have decided not to. They know that, if they choose, it is they who are in control, not the disease. That is power. That is triumph. That is how a human being should die.

  ASSISTED DYING: IT’S TIME THE GOVERNMENT GAVE US THE RIGHT TO END OUR LIVES

  New Humanist, July/August 2011

  A short time ago I had to insist to a not very youthful journalist that during my early lifetime anyone who attempted to commit suicide and failed would face a criminal charge and be locked up, presumably to show them life was wonderful and thoroughly worth living.

  It would be nice to think that in the not too distant future someone will be incredulous when told that a British citizen stricken with a debilitating and ultimately fatal disease, and yet nevertheless still quite compos mentis, would have to go all the way to another country to die. They would ask for an explanation, and I’d be damned if I could think of one. Three decent, sedate, and civilized European countries already allow physician-assisted suicide and yet, despite the fact that every indication is that British people understand and are in favour of assisted dying, if properly conducted, the government consistently turns its back on it. A year ago I was told by a cabinet minister that it would never happen in Britain and I suggested that this was a strange thing to say in a democracy and got a black look for my pains.

  Initially, I thought the opposition was largely due to a certain amount of curdled Christianity; despite the fact that there is no scriptural objection, the prohibition came about in the fourteenth century when, because of religious wars and the Black Death, people were committing suicide on the basis that, well, since this world was now so dreadfully unpleasant then maybe it would be a good idea to make an attempt on heaven. Authority thought otherwise and objected. Who would milk the cows? Who would fight the wars? People couldn’t be allowed to slope off like that. They had to stay and face their just punishment for being born.