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.
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."
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