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My day job (for the moment anyway) is located in a facility for people who, for the most part, are in late-to-end-stage dementia. The lives these people live, the way they are spending their closing years or months, and the great ignorance with the way people conduct themselves around them, is all too painful to contemplate, and I experience something heart-breaking every time I am there. I myself frequently have death on my mind as a possible near-term option. I probably won’t resort to that anytime soon, because I always emerge from the depression eventually. But if it ever happens that I end up with the choice of dying by my own hand, or perhaps with some help, or dying of Alzheimer’s, I know I will make the same choice that Terry Pratchett evidently has. (Usually this topic ends up causing me to go off onto a tangent and start ranting about embryonic stem cell research and how dumb I think the "pro-life" ideology is, but I'll spare everyone that today.)

I could just link to the original article, but I want to keep record of this remarkable item in my own journal. So I reprint here, in full, Terry Pratchett’s essay, with acknowledgement to Pratchett and the Daily Mail. Thanks, Sir Terry, for saying this and thanks to the Mail for spreading the word. If you would rather read it at the newspaper’s site (there are several photos accompanying), then the link is http://www.dailymail.co.uk/news/article-1203622/Ill-die-endgame-says-Terry-Pratchett-law-allow-assisted-suicides-UK.html  , and it is preceded by an article summarizing Pratchett’s comments. I would skip down past that and get right to his own words.

Pratchett:

We are being stupid. We have been so successful in the past century at the art of living longer and staying alive that we have forgotten how to die. Too often we learn the hard way. As soon as the baby boomers pass pensionable age, their lesson will be harsher still. At least, that is what I thought until last week.

Now, however, I live in hope - hope that before the disease in my brain finally wipes it clean, I can jump before I am pushed and drag my evil Nemesis to its doom, like Sherlock Holmes and Moriarty locked in combat as they go over the waterfall.In any case, such thinking bestows a wonderful feeling of power; the enemy might win but it won't triumph.

Last week a poll revealed that more than three-quarters of people in Britain approve of assisted suicide for the terminally ill.

On Thursday, the Law Lords delivered the landmark judgment in a case brought by multiple sclerosis sufferer Debbie Purdy, who feared her husband would be prosecuted if he accompanied her to die abroad.

She wanted the law on assisted dying to be clarified and the Law Lords have now ordered the Director of Public Prosecutions to draw up policy spelling out when prosecutions would and would not be pursued.

It looks as though the baby boomers have spoken and some of them, at least, hope they die before they get old - well, too old. Some have seen what happened to their parents or grandparents, and they don't like it. Every day I remember my own father's death. The nurses were kind, but there was something very wrong about it.

The poll result arrived at about the same time as the Royal College of Nursing announced that it was ending its opposition to assisted dying. Other signs indicate that the medical profession as a whole is at least prepared to face the issue.

I hate the term 'assisted suicide'. I have witnessed the aftermath of two suicides, and as a journalist I attended far too many coroners' inquests, where I was amazed and appalled at the many ways that desperate people find to end their lives.

Suicide is fear, shame, despair and grief. It is madness.

Those brave souls lately seeking death abroad seem to me, on the other hand, to be gifted with a furious sanity. They have seen their future, and they don't want to be part of it.

But for me, the scandal has not been solely that innocent people have had the threat of murder hanging over their heads for committing a clear act of mercy. It is that people are having to go to another country to die; it should be possible to die with benign assistance here.

You do not have to read much social history, or move in medical circles, to reach the conclusion that the profession has long seen it as part of its remit to help the dying die more comfortably.

Victorians expected to die at home, undoubtedly assisted by the medical profession.

In those days there was no such thing as drug control - just as there was no gun control. Laudanum and opiates were widespread and everyone knew you could get your hands on them. Sherlock Holmes was one of them!

As a young journalist I once listened in awe as a 90-year-old former nurse told me how she helped a dying cancer patient into the great beyond with the help of a pillow.

In the absence of any better medication in that time and place, and with his wife in hysterics at the pain he was forced to endure, death was going to be a friend; it was life, life gone wild, that was killing him.

'We called it "pointing them to Heaven",' she told me.

Decades later, I mentioned this to another, younger nurse, who gave me a blank look, and then said: 'We used to call it "showing them the way".'

Then she walked off quickly, aware that she had left a hostage to fortune.

I have been told that doctors do not like patients to worry that, theoretically, their GP has the expertise to kill them. Really?

I suspect that even my dentist has the means to kill me. It does not worry me in the slightest, and I imagine that, like many other people, I would be very happy for the medical profession to help me over the step.

I have written a living will to that effect, and indeed this article in The Mail on Sunday will be evidence of my determination in this matter. I cannot make the laws but you have no idea how much I hope those in a position to do so will listen.

In the course of the past few years, I have met some delightful people who say they have a passion for caring and I have no reason whatsoever to doubt them. Can they accept, however, that there are some people who have a burning passion not to need to be cared for?

It appears to be an item of faith with many people I have spoken to that both doctors and nurses, at least in hospital, still have 'things they can do' when the patient is in extremis.

I certainly hope this is true, but I wish we could blow away the clouds obscuring the issue and embrace the idea of ending, at their request, the life of a terminally ill person at a time and, if possible, a place of their choosing.

I write this as someone who has, regrettably, become famous for having Alzheimer's. Although being famous is all the rage these days, it's fame I could do without.

I know enough to realise there will not be a cure within my lifetime and I know the later stages of the disease can be very unpleasant. Indeed, it's the most feared disease among the over-65s.

Naturally, I turn my attention to the future. There used to be a term known as 'mercy killing'. I cannot believe it ever had any force in law but it did, and still does, persist in the public consciousness, and in general the public consciousness gets it right.

We would not walk away from a man being attacked by a monster, and if we couldn't get the ravening beast off him we might well conclude that some instant means of less painful death would be preferable before the monster ate him alive.

 And certainly we wouldn't tuck it up in bed with him and try to carry on the fight from there, which is a pretty good metaphor for what we do now, particularly with 'old-timers' disease.

(My speech-to-text programme persists in transcribing Alzheimer's as 'old-timers'. In fact, I've heard many people absent-mindedly doing the same thing, and as a writer, I cannot help wondering if the perception of the disease might be a little kinder without that sharp, Germanic intonation.)

My father was a man well tuned to the public consciousness. The day before he was diagnosed with pancreatic cancer he told me: 'If you ever see me in a hospital bed with tubes and pipes all over me, then tell them to turn me off.'

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 healthcare 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 26 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, in 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 formalised 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 emails, 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.

 

 

Comments

( 5 comments — Leave a comment )
ravenbait
Aug. 14th, 2009 06:21 pm (UTC)
It's a beautiful piece, only marginally spoiled by appearing in that populist organ of hate and prejudice that is the Daily Wail. I'd have thought that Mr Pratchett could have found a more august publication for such a thought-provoking and moving article, but then I dare say he wanted to reach a wide audience, not necessarily a thinking one.
mbranesf
Aug. 14th, 2009 06:29 pm (UTC)
Yeah true about the publication, but it's probably readers of something like that which probably most need to hear what he had to say.
ravenbait
Aug. 14th, 2009 08:54 pm (UTC)
Thing is, though, the readers of that particular publication probably won't Get It. Risking generalisation, they tend towards bigoted, racist and homophobic. Not to mention xenophobic, at least if their comments are anything to go by. Daily Wail readers are the ones who confuse paediatricians with paedophiles and think anyone of a darker colour than milk is a potential terrorist or illegal immigrant.
mbranesf
Aug. 15th, 2009 01:25 am (UTC)
I have to admit that I am not highly familiar with the political orientation of various British media, though I did have the sense previously that the Wail is a right wing organ, though I don't have first-hand familiarity with what they usually espouse. I guess I want to make it clear that I in NO WAY advocate that particular paper in itself, but that I just thought it appropriate to acknowledge them properly as the publisher of Pratchett's article, and would agree that it would have been even better had it appeared elsewhere.
ravenbait
Aug. 16th, 2009 10:58 pm (UTC)
http://www.youtube.com/watch?v=7Cn7ZW8ts3Y

An anitdote to the newspaper. Makes you understand what he means, really. Listening to that I wouldn't mind if it were raining.
( 5 comments — Leave a comment )