Even now I detect some echoes of that frame of mind: that affliction is somehow a penance for an unknown transgression. To hell with that! Every time the question of assisted dying is broached in this country there is a choreographed outcry, at suggested overtones of Nazism and, of course, the murder of grandmothers for their money. And the perpetrators get away with it because the British have a certain tradition of bullying from the top down. “The common people are stupid and we who know better must make the decisions for them.”
Well, the common people are not stupid. They might watch godawfully stupid reality TV and make a lot of noise in football grounds and they don’t understand, perhaps, the politics of Trident, but they are very clever about the politics of blood and bone and pain and suffering. They understand about compassion and, like my father, they are nothing if not practical about these things. He was incurably ill and saw no reason, given the absence of the hope of any cure, that he shouldn’t forgo any more suffering and head straight for the door.
And people also understand that, especially if you don’t have much money, long-term care in the U.K. can be somewhat problematical at best. And yet the government sits there like an ancient Pope, hoping that it will all go away.
DEATH KNOCKED AND WE LET HIM IN
Sunday Times, 12 June 2011
[The title Terry gave this piece was “Visiting Switzerland”]
Just before Christmas I saw a man die; Peter Smedley and his wife, Christine, had travelled to the Dignitas clinic in Switzerland, because Peter felt that only there could he find what he wanted, which was a neat, tidy, and timely death. And I went with him to watch. The mind does indeed boggle. I once read that you should judge the length of the journey by the things you learn along the way. If that is true, then my road to Switzerland, and back home again, was a marathon.
Late last year the BBC, who had transmitted my Dimbleby Lecture on assisted dying much earlier in the year, asked me to learn something about assisted dying as practised elsewhere in Europe, and also to speak to Britons who had signed up with Dignitas, the Swiss organization which is your last resort if you live in Europe and your country does not allow you an assisted death. Of course, I said yes.
Three years ago I was diagnosed with Alzheimer’s disease. I will not go into the reasons here why I may wish to be able to choose to end my life before the disease takes hold—I have spoken about and investigated dementia at length. As a writer I am blessed and cursed with an overactive imagination.
But would I still think this was such a good idea if I went to witness it firsthand?
In the U.K. assisted dying is illegal and anyone who dares assist a stricken friend or relative at their request is liable to end up in court, possibly on a charge of murder. There is some fine detail around this and it appears that some leniency could be afforded in the case of those who help out of compassion or love, which is why, so far, the judges have been extremely understanding; in short, here in Britain, amateurs are allowed to help other amateurs to die. It is a nonsense but it is the only nonsense we have got.
In Belgium, Holland, and Switzerland citizens stricken with a debilitating and incurable disease can choose to die at the kindly hands of a physician who would have the skills and the legal framework on which to depend. These countries are amiable, decent democracies, not known for excitability or stupidity. Usually their churches treat this with some dismay, but generally the position seems to be that it is entirely up to the conscience of the individual concerned.
I followed two men to Dignitas, Peter Smedley and Andrew Colgan, two entirely different men from entirely different backgrounds with entirely different diseases and one steadfast intent which was not to spend any more time in the jaws of the beast and go straight to the last act.
I first met Peter Smedley and his wife, Christine, at their large and beautiful home. The Smedleys have a wonderful talent of getting on with everybody they meet in a very English way. Christine would have rather Peter stayed at home to be cared for and, indeed, could have afforded the very best of care, but in the little world of this marriage an accord had been reached and Christine was on her husband’s side and to hell with what the law might say.
I must admit that I entertained a brief vision of what might happen if Christine Smedley was sent to prison for the dreadful crime of helping her husband to travel to another country, and concluded she would certainly shake the place up to its general improvement and probably end up taking tea with the warden. As it was, she and Peter went off on a holiday before Christmas to see friends in Switzerland.
Later, in the vicious early winter weather, I met Andrew Colgan, forty-two with multiple sclerosis. Like Peter, he had no further interest in receiving care. I must report that both men had nothing bad at all to say about the care of the seriously ill in this country. In fact, they had very little to say about care at all except that they were resolute in not wanting to be cared for.
Andrew looked younger than his age, wiry, all sinews, and at first you would think, “Well, nothing much wrong with him,” until you see the strain in his face. He was a science fiction fan, and the director had several times to scold us for neglecting the purpose of the interview to indulge in such weighty debates as “Was Blake’s 7 really as pants as it seems in memory, or what?” But it was when we were back on track that I found the anger welling up. Andrew was going to die in Switzerland earlier than he might have needed to because, like Peter, he did not want to put any member of his family in jeopardy of the law for assisting him to travel. In truth, I wondered if his fears were essentially groundless, and given that the director of Public Prosecutions is surely not a vindictive or cruel man and also that the judiciary is noticeably sensible in cases like this I may well be right.
However, sometimes authority gets a rush of blood to its head and prefers to punish the lamb that strays more harshly than the wolf that ravages. Besides, who would choose to see their mother in a court of law, however benign? So he was going alone, and I was thinking, “Why couldn’t he have a physician-assisted death here in England?” And, who knows, if he’d known that he could die when he chose to, then perhaps he would have hung on for longer; there is some evidence that this might have been the case, to judge by experience elsewhere.
But, when I talked to him, he was adamant, picking up my hesitant countersuggestions and detecting them for what they were with the speed of Russian over-the-horizon radar. He had been through all that, did not want to be cared for and, like Sherlock Holmes, wanted to take his enemy with him.
We met Andrew in Switzerland for a drink. And I think it was at that point that my head gently started to spin. I have been to wakes, but never one where the principal performer was going to be raising a glass. The way you deal with a situation like this is with humour and so we laughed and joked and, for a blessed while, found ourselves in a happy place. I know this because I was fortunate enough to have with my father, in the months before his death, those conversations that you would wish to have with a parent in those circumstances and we found that somehow humour always got through.
I once heard an opponent of assisted dying in general and Dignitas in particular say, “People get killed in an industrial estate!” clearly hoping to conjure up images of Cybermen on the march. In fact it is an industrial estate where you will find the small blue house with a little garden about which one can best say that someone has tried very hard. It has to be in an industrial area, because it would not be acceptable in a residential area. There was a field of pumpkins on the other side of the narrow road, no traffic to speak of, and no sounds at all emanating from the other buildings, which seemed quite benign; perhaps the Cybermen were off on their holidays.
I knew that Christine Smedley was going to sit with her husband and, thinking that a knighthood must have some purpose, I had earlier asked her if she would like a fellow Brit there as well, and she was grateful for the offer. Peter wanted our director to film his death, and to include it in the documentary, becau
se he wanted his death to count for something. I have seen dead bodies before, one of them exceedingly, horribly dead, and I reckoned that the death of a stricken man who sincerely wished to die would not be too stressful. As it happened I was wrong, but for all the wrong reasons.
According to my watch his death took about twenty-five minutes. As the organs and chambers of his body yielded, I heard occasional sounds not too dissimilar to those made by my father as he gradually succumbed to pancreatic cancer and morphine. My mother believed he was trying to say something. I didn’t. Outside of actual trauma it takes quite some time for a body to die, treacherously hanging on despite the wishes of the brain.
Peter’s wife was holding his hand and frankly, as a bystander, I can’t be sure of the point where he departed this world for the next. A kind Swiss lady called Erika, not wearing any kind of official uniform, but gently in charge all the same, knelt beside him while outside the picture window of the little house in which we were gathered the snow fell gently. Everything was silent and on the veranda outside, Erika’s husband, Horst, who looked like your favourite grandfather, smoked his, yes, incredibly big and curly pipe, the smoke gently mixing with the falling snow. He was outside because, you see, although assisted dying is legal in Switzerland it would appear that smoking indoors is now the last taboo. No wonder the whole experience was for me so memorably surreal.
And Christine? She leaned over to ask me if I was all right. I am not a natural or promiscuous hugger but I hugged that day.
The police arrived shortly after, to check that what had happened was within the law. They were not unpleasant but neither were they friendly; they were just, well, the police, doing their job. As we waited, one of them came up to us and simply said “BBC?” and took our mumbled word for it, the BBC of course being internationally known as the body who would not be party to any hanky-panky. And in my mind, I waved a little Union Jack.
I am in no doubt that the BBC will be criticized for showing the death of the good man who was Peter Smedley, who died between his wife and an attentive nurse while the snow fell slowly outside. After the Dimbleby Lecture I gave last year where I first put forth my support for assisted dying in theory, a cross-party collection of MPs proposed a vote of censure against the BBC, clearly being unaware that, in a democracy, it is not against the law to argue peacefully for a change in the law. But the fact is that Peter and Andrew dragged themselves to Switzerland to die with the dignity they feared that they would not get in Britain. More have gone since then, often at great cost.
Politicians, fearful of full in-trays from the ultrareligious, mutter phrases like “the sanctity of life” without defining what they mean, or why. They murmur “It’s all very complicated,” when it is in essence very simple; my father understood it and so did my mother and really, I suspect, so do most people in this country.
States in the U.S.A. and sensible, stable countries here in Europe have found ways of creating a sensible way of allowing assisted dying for those that request it without any collateral damage to the society as a whole. The templates are there, even though I think we could do better.
A year ago a senior Tory shrugged me off on this subject with “That sort of thing should be left to doctors.” Perhaps by now he knows that it is left to doctors in Holland and Belgium and Switzerland and, indeed, parts of the U.S.A. France and Italy do not have any formal system of assisted dying, probably because of too much religion, while Germany does not, very emphatically does not, because of too much history. But why not here? And the answer had better be more sophisticated than “God won’t like it” or “It’s very difficult” or “How do you protect the vulnerable?” The answer to that is: quite easily, with a little thought and a little willingness and some cognizance of the term “the freedom of the individual,” a concept coming under some strain here in Britain. The same old arguments against will be rolled out by those that repeatedly pose the questions and then don’t listen to the answers and, I fear, men and women in some distress, and certainly at some cost, will continue to make their way to Switzerland to the embarrassment of the Swiss and the shame of the British.
Will I be one of them? I certainly hope not. I suspect that I am just like you, and like Peter and Andrew, in wanting to die peacefully at home, surrounded by my loved ones. I do not think that it is too much to demand.
A WEEK IN THE DEATH OF TERRY PRATCHETT
The bestselling author and Alzheimer’s sufferer reflects on the days following his controversial right-to-die documentary
The Independent, 18 June 2011
Monday
D-Day; that’s Documentary Day on the calendar here in our office. We spend the morning piling into the ever-present workload until it’s time to head off to watch the documentary with the director, Charlie Russell, and his family and friends.
There is just enough time for a drink and a nibble before we’re on air. Absolute silence in the room except for the occasional muffled sob as the story of Peter and Andrew unfolds and, at the end, the release and the discussion. I am glad there was a discussion, because there was a lot to be discussed.
A short break and then a BBC Newsnight special with Jeremy Paxman, David Aaronovitch, Liz Carr, Dinah Rose QC, Debbie Purdy, the Rt. Revd. Michael Langrish, the Bishop of Exeter (who was at least open to arguments, unlike some bishops), and also, I was glad to see, Erika Preisig, whom I met and admired in Switzerland.
I was surprised to hear from Erika that a Roman Catholic priest had come to Dignitas and had spoken to her, had agreed that it wasn’t his time, had told her she was doing a good thing, and came back later and did indeed go through with his assisted death. I have a lot of time for Dr. Preisig. She is a Christian, but understands those who beg for an assisted death; like me she has been appalled at some of the terrible outcomes of “traditional” suicides.
Tuesday
The documentary was not made to encourage, dismay, or condone, it was made to see. I was also hoping that it would lead to discussion and it certainly has done so.
And under Jeremy Paxman’s tactful arbitration, views were aired and discussed in a reasonably civilized way. With a sigh of relief, my assistant Rob and I hurtled into the city to grab what rest we could, getting, in my case, no more than two hours’ sleep before heading to the sofa in the BBC Breakfast studio. Rob, sitting next to me in the cab, was trying to keep up with the tweets and reported that they were coming in at a rate of more than one a second with an approval/disapproval rating of 99.9 percent. One of the objections being against Rob’s Russian naval officer’s hat, which he thinks is rather spiffy, but there is no accounting for taste. Other online discussions seemed positive, too, with objections being more about the running of Dignitas than whether assisted dying should be available here in the U.K.
As I feel I have to keep saying, I don’t want to be a publicist for Dignitas, but the unfortunate fact is that for a Briton who wants an assisted death, Dignitas represents the only choice and five more of our citizens have quietly made their way there since the documentary was filmed.
Then we stagger into another couple of interviews before again meeting the director to learn that there had been 1,219 complaints to the BBC and 301 calls in favour, making it one of the top ten programmes this year for appreciation. We were also told the complaints showed some evidence of lobbying; I just bet they did. The good people at the Care Not Killing Alliance certainly know how to use a telephone.
Then it’s back home to catch up on sleep and to find that Michael Nazir-Ali, the former Bishop of Rochester, wishes to tell me that real life is not like science fiction. Actually, sir, it is. I live in a science fiction world and so does he; the stents in my heart are science fiction and so are the little pills that go some way to make my Alzheimer’s bearable.
A very large number of things which we take for granted were science fiction once, and some others were never science fiction because not even science fiction writers had imagined them. The bishop ought to respect science f
iction; he’s living in it.
And once again he triumphantly delivers the ever-present question: how, if assisted dying is allowed in the U.K., do you safeguard the vulnerable? This is without fail trotted out by all those against the idea and is delivered as if it is the killer argument.
As the documentary says, there are four countries in Europe that practise some form of assisted dying and recently the Swiss voted in a referendum to maintain the practice. They even voted in favour of continuing to allow the so-called death tourism for those unfortunates, like the British, who make their way to Dignitas.
This does not sound like people who are living in a world where innocent citizens are being killed against their will, does it?
Wednesday
We start trawling through the interminable number of e-mails that had arrived while we were asleep and we find that many viewers had been touched and impressed by the testimony of Veerle Claus-De Wit, whose husband, Hugo, was granted his request for an assisted death by sympathetic and caring doctors. He had the same disease as I have and I certainly took that one to heart.
There are those that would never accept the concept of assisted dying, it seems, and yet it does appear, sitting here looking at the e-mails still coming in, that this country, if not our government, is thinking constructively. Sniping is, of course, going on from various newspapers that we are picking up. However, there are thoughtful columns as well, but I must say that Alex Hardy’s inconsiderate sneer in The Times at Christine Smedley, a woman endeavouring to put a brave face on the death of her husband, was execrable.
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