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Do not go gently, but please do be brief.
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Published Monday, May 21, 2018 @ 8:07 AM EDT
May 21 2018

One of the first- and surprisingly most important- skills I had to learn 47 years ago as a 17 year old cub reporter at a small daily newspaper was to transcribe obits.

Obituaries, that is. Paid death notices, called in by local funeral directors, often just a few minutes before the deadline for the day's edition.

Very, very few local people ranked a news obit at our paper. You had to be special- an elected official, a former athlete, a beloved numbers writer- to warrant editorial recognition of your passing. Even then, there'd usually just be a brief headline, a picture pulled from the files, and something along the lines of "The community is mourning the passing yesterday of so and so, a respected teacher and coach... See the obituary listings on page six."

Obits were- and remain- an essential, indispensable source of revenue for newspapers. Along with legal notices and the ever-shrinking classified ad pages, paid death notices generate much more money per inch than display advertising. And depending upon the average age of a publication's subscribers, the obits could also have more readers than the other, "real news" sections of the paper, possibly excepting the comics page. I recall that on days with no deaths and no published obits, word got around the community quickly and our newsstand sales for the day would actually decline.

My first day as a reporter at the "rim" of the city desk- a big, semicircular hunk of metal and vinyl furniture, with the editor esconced in the center (the "slot") and reporters seated around the outside- did not begin as I had expected. There was no lecture on ethics, the handling of sources, a review of the AP Style Book, or other journalistic exercises. The very first thing the city editor impressed upon me was the vital importance of taking obits over the phone.

Why make reporters take the obits, and not the classified department? In the unlikely event the deceased was someone of import, we'd know about it first. But mainly, management asserted those of us in editorial were the fastest, most accurate typists, would make the least mistakes, and would be more likely to hustle an obit down to graphics in time to meet deadline and generate billing for that day. Money was an important consideration. As my city editor made quite clear to me, the one-day publication of the death notice of an individual with lots of kids and grandkids- requiring the purchase of several column inches of space- would pay my salary and mileage expenses for an entire week. A newspaper is a business, after all.

When the phone rang in editorial and it was a local funeral director on the line, you put the police chief or mayor or your mother on hold immediately, stuffed a new sheet of paper in your manual Royal, and typed like mad.

My first day I think I did three obits, thereby justifying my existence and engendering a feeling of self-achievement. That lasted until about 2 p.m., when the paper hit the streets and I got the call from a furious funeral director.

"Look at that obit," he fumed. I shuffled to the page and found the listing. "Read it," he demanded.

"John Doe, 75, of Homestead, died Novem-"

"Stop!" he yelled. "What's that word in there after Homestead?"

"Died," I replied.

"Died," he repeated, his voice dripping with sarcasm. "It's the effing obituary column, you idiot. What the hell else would he be doing? Shooting hoops? Let me talk to your boss. Now."

I forwarded him on and sat there, genuinely puzzled at the outburst. A few minutes later, the city editor called me into a bare, vacant office adjacent to the newsroom.

"Bet you're wondering what the big deal is with that obit, huh?" he asked, not unkindly. I sat there in silence and nodded in bewildered agreement.

"Okay, it's like this. The funeral home business around here is pretty cut-throat, what with all the old people and competing parlors. Some offer special package deals- coffin, embalming, viewing, publishing the obit, hearse rental, everything- for a fixed price. By adding the word 'died', which he swears he didn't say to you, the obit ran one line deeper, which cost him like another ten bucks or so which, he emphasized, came straight off his bottom line. I told him we wouldn't charge him for the extra line, and that while I wouldn't fire you since you're new, I'd be sure to put the fear of God in you, which I assume I've done."

I shook my head again. He smiled and chuckled. "Don't sweat it, kid. You did okay for your first day. But from now on, you read the copy back to him and get him to approve it before you send it downstairs. Keep it as short as possible, and go easy on the punctuation marks, too. He complained about too many commas in his listings last week."

On the few occasions since my newspaper days that I've had the sad and unfortunate responsibility to write an obituary, I recall that first day on the job and the lessons learned. True, I've loosened up a bit. For the sake of readability, I don't skip on modifiers and articles, and I use complete sentences. Frugality does not trump coherency, and what's another 20 bucks or so? You only die once, may as well splurge a bit.

Due to my recent experience, for the past several weeks I've been reading through the paid death notices in the local papers, fascinated by their evolution since my professional involvement four decades ago. The new euphemisms, phrasings, magniloquence, and verbosity of modern obituaries are impressive.

It is interesting to note the term "obituary" is itself a tortured euphemism of sorts. One of the interpretations of its Latin root word "obit" is, indeed, death. But its first meaning is the act of going toward something, to approach, encounter, or visit. Its second is the process of descending, setting, or sunset. Death ranks a lowly third. This form of linguistic contortionism is still common today. Consider pass, expire, terminate, depart, move on, croak, etc. All of these words can describe death or dying, but it's not the primary definition of any of them.

My favorite circumlocution on the subject, which one could describe as almost poetic (if not for its source) comes from the famous Monty Python Dead Parrot sketch: "...he's shuffled off his mortal coil, run down the curtain, and joined the choir invisible." It also contains the assertion that the bird in question, "a Norwegian Blue", had not expired, but was rather "pining for the fjords," a phrase ingrained deeply enough within our zeitgeist that it's the title of a scholarly paper bemoaning the use of indirect terms referencing death.

But I digress.

In addition to the "departure verb" or description, the modern obit often features a mind-numbing litany of the individual's life. Some of these descriptions can be considered perhaps too brief, but most offend wildly in the other direction.

I suspect family members and survivors who ramble on in their social media posts are stunned when they receive a due on receipt, four-figure invoice from the funeral director or newspaper. What else could be expected from breathlessly recounting, in excruciating detail, the last ten years of dearly departed Nana's social and recreational activities at the assisted living facility, as well as listing the names of every miniature poodle she'd ever owned? And what was the reason for mentioning her recent in-hospital treatment for chlamydia? We all know there are no koalas in Turtle Creek. Nudge, nudge, wink, wink, eh? (Another Python reference).

In any event, here are some memorable phrases I've transcribed from paid death notices recently. No offense intended. I'm certain they were sincere in context.

...accidentally, while having the time of his life. (What was it that he was doing? It sounds as if it was something that should be avoided.)

...after a long, grueling battle with alcoholism. (Whose alcoholism? Whose batttle? Who found it grueling? Was this really necessary, or one last passive-agressive outburst?)

...after an extended illness, surrounded by his family, left home with the angels. (One assumes the angels dropped the family off somewhere en route.)

...shortly after the celebration of her 100th birthday ("You do not need to take a shot for each year, Grandma.")

...after long illnesses, including heart disease, diabetes and frontal temporal lobe dementia (When I read ones like this, I don't know if the family is expressing sympathy for the departed or relief for themselves.)

...after saying, 'Take me home, Jesus.' (Unfortunately, the Jesus in question was his Uber driver.)

...at age 95 (looks good for her age) (Well, not any more.)

...ascended to heaven, breathed her last breath and went peacefully to God's eternal home and into the arms of her husband, daughter, and son. (These always strike me as presumptuous, for some reason. And I think they got the sequence wrong.)

...born on the Feast of the Guardian Angels and was taken home on their wings. (Feast... wings... eww...)

...bravely faced death in the arms of his devoted wife. (Let's hope she didn't have him in a chickenwing over-the-shoulder crossface hold.)

...died peacefully beside his one and only true and forever love, his wife. (Please tell us they were home in bed.)

...died peacefully in his favorite chair. (I wouldn't mind going that way.)

...donned his wings. (This makes me think of Michael Keaton in "Birdman.")

...escaped this mortal realm. (Sounds like a Bifrost-related subplot from a Marvel "Thor" movie.)

...finally, after succumbing to illness. ("Finally"? Man, that's harsh.)

...found peace and rest after 36 years of a courageous and uncomplaining battle with a cerebral venous malformation. (If he didn't complain, why bring it up now?)

...has gone home. (This euphemism has always bothered me as well. Home is where the good wi-fi and dogs are. Period.)

He had just finished serving his mom and aunt breakfast in bed and said he was going back to bed to sleep in a bit longer. He died in his sleep. (Thereby giving his mom and aunt a sense of guilt that will haunt them the rest of their days. Thanks for reminding them.)

Her loving family sent her home to be with her mother, father, brothers, and sister. (Did she die, or did you just kick her out of the apartment above the garage?)

...joined his friends for their eternal golf matches. (According to those who played behind them, their matches down here seemed eternal as well.)

...made her transition at her residence. ("made her transition at her residence" vs. "died at home"? Someone's getting a kickback from the newspaper.)

...passed away and joined her late ex-husband. (Are we talking about heaven here? From whose perspective?)

...passed away on Christmas night, following a seven year battle with frontotemporal dementia. (The "Touched By An Angel" school of obit writing.)

...passed from this earth to a more beautiful and peaceful place. Leaving far too soon, his life cut way too short, he touched many lives and left the world and us better for his having been here. (You know, we remember "The Big Chill" too.)

...peacefully, after a long descent. (Descent? Hot air balloon? Airbus 380? Everest?)

...peacefully moved on to his next adventure. (Let's hope the next one ends better.)

...received a command from her Lord. She now resides in heaven and has been chosen to sing in God the Father's choir (Thanks for voting in "Heaven's Got Talent"!)

The Universe has shifted. (I'd like to see the math on that, please.)

...unexpectedly, doing what she loved at camp. (Please, for the love of God, say no more...)

...was called (adverb) by (some supernatural entity) to (engage in some empyrean activity). (Some funeral directors apparently use Mad Libs.)

Full disclosure: The author maintains his own obituary, which now stands at 738 words. Hey, I'm getting up there, and I've owned a lot of dogs.


Categories: Death, Newspapers, Obituaries, Passages, The Daily KGB Report


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"My life, my death, my choice."
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Published Sunday, April 28, 2013 @ 8:51 AM EDT
Apr 28 2013

Sir Terry Pratchett (April 28, 1948-March 12, 2015):

A collection of Pratchett quotes is here. I suggest you come back and review them should you read and watch the material below.

Shaking Hands with Death
The Richard Dimbleby Lecture 2010

(YouTube video: "Shaking Hands with Death." )

Firstly I must express my gratitude and grateful thanks to the Dimbleby family for asking me to give this lecture today.

I cherish what I suspect is at least part of their reason for inviting me. I was a young newspaper journalist, still learning his trade, when Richard Dimbleby died of cancer in late December 1965. Two pieces of information shook the nation; one was that he had died and the other was that his family said that he had died of cancer. At that time it was the disease whose name was unspoken. People died of "a long illness" and as journalists we accepted and connived at this furtive terminology. However, we all knew what it meant, yet nobody used the forbidden word. But overnight, people were talking about this, and as a result it seemed to me the war on cancer began in earnest. Before you can kill the monster you have to say its name.

It was the distant echo of that example that prompted me to stand up two years ago and reveal that I had a form of Alzheimer's disease. I remembered the shameful despairing way cancer had been hidden in darkness. That and the Dimbleby family's decision to be open about Richard's death were at the soul and center of my own decision, which I made because of the sheer impossibility of not doing so. It was not a decision in fact. It was a determination and a reckoning.

My name is Terry Pratchett and I am the author of a very large number of inexplicably popular fantasy novels.

Contrary to popular belief, fantasy is not about making things up. The world is stuffed full of things. It is almost impossible to invent any more. No, the role of fantasy as defined by G.K. Chesterton is to take what is normal and everyday and usual and unregarded, and turn it around and show it to the audience from a different direction, so that they look at it once again with new eyes.

I intend tonight to talk about Alzheimer's disease, which I am glad to say is no longer in the twilight, but also about another once taboo subject, the nature of our relationship with death.

I have regrettably to point out that the nature my disease may or may not allow me to read all the way through this lecture. If this is the case, we have arranged for my friend, Tony Robinson, who made a very moving programme about his own mother's struggle with dementia, to step in and be your stunt Terry Pratchett for the evening.

I'm sure you know that, for my sins, which I wish I could remember because they must have been crimson, I am effectively "Mister Alzheimer's" and I have given more interviews on the subject than I can remember. But there are others, less well known, who have various forms of dementia and go out and about being ambassadors for the Alzheimer's Society in their fight against the wretched disease. It's not just me, by a long way. They are unsung heroes and I salute them.

When I was a young boy, playing on the floor of my grandmother's front room, I glanced up at the television and saw Death, talking to a knight and I didn't know very much about death at that point. It was the thing that happened to budgerigars and hamsters. But it was death, with a scythe and an amiable manner. I didn't know it at the time, of course, but I had just watched a clip from Bergman's Seventh Seal, wherein the Knight engages in protracted dialogue, and of course the famous chess game, with the Grim Reaper who, it seemed to me, did not seem so terribly grim.

The image has remained with me ever since and death as a character appeared in the very first of my Discworld novels. He has evolved in the series to be one of its most popular characters; implacable, because that is his job, he nevertheless appears to have some sneaking regard and compassion for a race of creatures which are to him as ephemeral as mayflies, but which nevertheless spend their brief lives making rules for the universe and counting the stars. He is, in short, a kindly death, cleaning up the mess that this life leaves, and opening the gate to the next one. Indeed, in some religions he is an angel.

People have written to me about him from convents, ecclesiastical palaces, funeral parlors and not least, hospices. The letters I've had from people all around the world have sometimes made me give up writing for the day and take a long walk. It is touching, and possibly worrying that people will write, with some difficulty, a six page letter to an author they had never met, and include in it sentiments that I very much doubt they would share with their doctor.

I have no clear recollection of the death of my grandparents, but my paternal grandfather died in the ambulance on the way to hospital after just having cooked and eaten his own dinner at the age of 96. (It turned out, when we found his birth certificate, that he was really 94, but he was proud of being 96, so I hope that no celestial being was kind enough to disillusion him.)

He had felt very odd, got a neighbor to ring for the doctor and stepped tidily into the ambulance and out of the world. He died on the way to the hospital- a good death if ever there was one. Except that according to my father, he did complain to the ambulance men that he hadn't had time to finish his pudding. I am not at all that sure about the truth of this, because my father had a finely tuned sense of humor which he was good enough to bequeath to me, presumably to make up for the weak bladder, the short stature and the male pattern baldness, which regrettably came with the package.

My father's own death was more protracted. He had a year's warning. It was pancreatic cancer. Technology kept him alive, at home and in a state of reasonable comfort and cheerfulness for that year, during which we had those conversations that you have with a dying parent. Perhaps it is when you truly get to know them, when you realise that it is now you marching towards the sound of the guns and you are ready to listen to the advice and reminiscences that life was too crowded for up to that point. He unloaded all the anecdotes that I had heard before, about his time in India during the war, and came up with a few more that I had never heard. As with so many men of his generation, his wartime service was never far from his recollection. Then, at one point, he suddenly looked up and said "I can feel the sun of India on my face," and his face did light up rather magically, brighter and happier than I had seen it at any time in the previous year and if there had been any justice or even narrative sensibility in the universe, he would have died there and then, shading his eyes from the sun of Karachi.

He did not.

On the day he was diagnosed my father told me, and I quote; "if you ever see me in a hospital bed, full of tubes and pipes and no good to anybody, tell them to switch me off."

In fact, it took something under a fortnight in the hospice for him to die as a kind of collateral damage in the war between his cancer and the morphine. And in that time he stopped being him and started becoming a corpse, all be it one that moved ever so slightly from time to time.

There wasn't much I could have done, and since the nurses in the Welsh hospice were fine big girls, perhaps that was just as well. I thank them now for the geriatric cat that was allowed to roam the wards and kept me and my mother company as we awaited the outcome. Feline though it was, and also slightly smelly, with a tendency to grumble, it was a touch of humanity in the long reaches of the night.

On the way back home after my father's death I scraped my Jag along a stone wall in Hay on Wye. To be fair, it's almost impossible not to scrape Jags along the walls in Hay on Wye even if your eyes aren't clouded with tears, but what I didn't know at the time, but what I strongly suspect now, was that also playing a part in that little accident was my own disease, subtly making its presence felt. Alzheimer's creeps up very gently over a long period of time, possibly decades, and Baby Boomers like myself, know that we are never going to die so always have an explanation ready for life's little hiccups. We say, "I've had a senior moment. Ha! Ha!" we say, "everybody loses their car keys," we say, "oh, I do that, too. I often go upstairs and forget what I have come up for!" we say, "I often forget someone's name mid-sentence" and thus we are complicit in one another's determination not to be mortal. We like to believe that if all of us are growing old, none of us are growing old.

I have touch typed since I was 13, but now that was going wrong. I got new spectacles. I bought a better keyboard, not such a bad idea since the old one was full of beard hairs and coffee, and finally at the end of self-delusion I went to see my GP. Slightly apologetically she gave me the standard Alzheimer's test, with such taxing questions as "what day of the week is it?" and then sent me off locally for a scan. The result? I didn't have Alzheimer's. My condition was simply wear and tear on the brain caused by the passage of time that "happens to everybody." Old age, in short. I thought, well, I've never been 59 before and so this must be how it is.

So off I went, reassured, about my business; I did a signing tour in Russia, a signing tour in the USA, which included breakfast at the White House, (there were lots of other people there, it wasn't as if I handed Mrs. Bush the corn flakes or anything) and then I did a signing tour in Italy, where the wife of our Ambassador very diplomatically pointed out that I had made a fist of buttoning up my shirt. Well, I had got up early for the flight, and had dressed in the dark, and so we all had a little chuckle, followed by lunch, and I hoped that everyone but me forgot about it.

Back home my typing was now so full of mistakes that it was simpler for me to dictate to my personal assistant. I went to see my GP again and she sent me to Addenbrooke's Hospital in Cambridge. I have never discussed the interview with her, but either by luck or prescience, I ended up in front of Dr. Peter Nestor, one of the few specialists in the country, or maybe the world, who would recognize Posterior Cortical Atrophy, the rare variant of my disease. He and his colleagues put me through a battery of tests, and he looked again at my scans, this time, importantly, in a different place. When he gave me the news that I had a rare form of Alzheimer's disease I quite genuinely saw him outlined in a rectangle of flaming red lines. We had a little bit of a discussion, and then, because the facility was closing for the day, I went home, passing another doctor putting on his bicycle clips- this was Cambridge, after all, and such was my state of mind that he too was outlined in red fire. The whole world had changed.

I was lucky in several ways. PCA is sufficiently different from 'classic' Alzheimer's that I have met fellow sufferers from it who dislike it being linked with that disease, even though the pathology and the endgame are ultimately the same. The journey, however, is different. PCA manifests itself through sight problems, and difficulty with topological tasks, such as buttoning up a shirt. I have the opposite of a superpower; sometimes, I cannot see what is there. I see the teacup with my eyes, but my brain refuses to send me the teacup message. It's very Zen. First there is no teacup and then, because I know there is a teacup, the teacup will appear the next time I look. I have little work-arounds to deal with this sort of thing- people with PCA live in a world of work-arounds. A glass revolving door is a potential Waterloo; I also have a workaround for that now, too. In short, if you did not know there was anything wrong with me, you would not know there is anything wrong with me. People who have spoken to me for half an hour or so ask me if I am sure I have the illness. Yes, it's certainly there, but cunning and subterfuge gets me through. So does money. The first draft of this speech was dictated using TalkingPoint on my computer which, while not perfect, produces a result that is marvellously better than anything I could tap out on the keyboard.

From the inside, the disease makes me believe that I am constantly being followed by an invisible moron who moves things, steals things, hides things that I had put down a second before and in general, sometimes causes me to yell with frustration. You see, the disease moves slowly, but you know it's there. Imagine that you're in a very, very slow motion car crash. Nothing much seems to be happening. There's an occasional little bang, a crunch, a screw pops out and spins across the dashboard as if we're in Apollo 13. But the radio is still playing, the heater is on and it doesn't seem all that bad, except for the certain knowledge that sooner or later you will be definitely going headfirst through the windscreen.

My first call when I got back from Cambridge was to my GP. I wanted to know what was going to happen next. In fact, it became clear that nothing at all was going to happen next unless we made it happen; there was no specialist anywhere local to me prepared to take on an early onset patient with PCA and therefore nobody who could legitimately write me a prescription for the only palliative Alzheimer's drug on the market. When I learned this I was filled with a rage, a rage that is with me still, but by now tempered and harnessed to practical purposes. I felt alone. A cancer sufferer, just diagnosed, can at least have some map showing the way the future might, hopefully, go. And I don't seek to minimize how dreadful that disease would be, but there would be appointments, there would be specialists, there would be tests. Hopefully, you would receive sympathy, and hopefully you would have hope.

But, at that time the Alzheimer's patient was more or less told to go home. Indeed, I have been contacted by patients who were in effect told just that, with not even the suggestion that they might talk to, for example, the Alzheimer's Society. I will say an another aside, I'm not the sort of person who goes to groups, but much later, I was persuaded to go to a PCA meeting in London, hosted by Professor Rosser of the National Hospital for Neurology and Neurosurgery. I remember the smiles when I started talking about the symptoms and it was hugely refreshing to be among people who understood without having to be told. But I had seen the bicycle clips of fire; I would have thrown a brick through a pharmacy window late at night for the medication I needed, and come to think of it, that might have made a damn good photo opportunity, but friends and contacts of mine who cared about my liberty helped me deal with the situation in the way that people deal with such situations in stupid hidebound bureaucracies. We bent things, just a tiny little bit. It wasn't as though I was stealing. I still had to pay for the damn drugs.

But then it was time to decide who I was going to tell, and for the reasons given earlier, I decided to tell everybody. After that, my life ceased to be my own. I have had so much mail that not all of it can be answered in my lifetime. And I cannot remember how many interviews I have given. They must run into three figures easily. We did the BAFTA Award winning documentary, in which I demonstrated to the world the impossibility of my tying a tie (funnily enough, I can tie my shoe laces, presumably because I have known how to do that for longer.) I have also been able to write two more books, which my PA insists I tell you were bestsellers, had a stone bridge built over the stream in my garden, have been kissed by Joanna Lumley and after being, astonishingly, knighted, subsequently made, with the help of knowledgeable friends, a sword- doing it the hard way, by first digging the iron ore out of the ground and smelting it in the garden. Of course, I shall never be able to take it out on the street, because such is the decay of our society that not even Knights can carry their swords in public. But who could ask for anything more? Except for, maybe, another kiss from Joanna Lumley.

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 theater queues, on airplanes 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 earned 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 e tended not to go into too much detail, but I had to listen to it. And I remember that Coroner's 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 o 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 fulfill. In the course of the past year or so I have talked amiably bout 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 quot;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 his 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 post-war 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 Attitude Survey found that 71% of religious people and 92% of non-religious people were in favor 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 favor assisted death in special circumstances, while others support 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 goodbye to me, and knowing him, he would probably have finished with 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 insuppressible.

But of course, this did not happen because myself, 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 end game is effectively the same as Alzheimer's and that it is the most feared disease among the elderly and although I was diagnosed when I was 59, 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, but 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 and it's 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 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 remember 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; this 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 non-traumatic death- 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 it took place in your own bed. The Victorians knew how to die. They saw a lot of death. And Victorian and Edwardian London were 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 proceed by micro seconds, 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 it, assures 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, 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 exorcise themselves when they wonder 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 the 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 dying 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 a person, elderly or otherwise, weighed down with medical problems and understandably fearful of the future, and dreading what is hopefully called care, may consider that the "Victorian style death", gently assisted by a medical professional, at home, might be 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 non-aggressive 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 side step 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 center 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, if 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- that anywhere in the world where assisted dying is practiced, of the sick or elderly being cajoled into assisted death by relatives and I see no reason to believe 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 much as humanly possible, any abuses.

I would also suggest that all those on the tribunal are over 45 years old, by which time they may have required 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 practiced 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 they 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 "Though 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 70. But there comes a time when technology outpaces sense, when we believe 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 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 it has seen it as part of its 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 was allowed. The problem is 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 center 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 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.

(YouTube video: "Choosing to Die." )

"In this documentary Terry Pratchett discusses his Alzheimer's and how it is slowly eroding away his life and his talent. He meets others with medical conditions which will inevitably lead to a prolonged, painful and above all undignified death and asks the question "is it better to end things early?" There are few answers here. Pratchett is on a genuine mission of inquiry, he's not preaching a position, nor does he end up with an opinion. Instead he takes a frank look at a subject most shy away from, and his only real conclusion is that we'd perhaps do well to think it through more than we do now.

"Be warned, towards the end of the documentary he accompanies a man to a Swiss clinic where he chooses to end his own life. This is not depicted in any kind of voyeuristic way, but both Pratchett and the camera do sit right there in the room with him and watches him die in cold, unflinching detail."


Categories: Alzheimer's Disease, Assisted death, Death, Euthanasia, Passages, PCA, Posterior Cortical Atrophy, Quotes of the day, Terry Pratchett


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