More than 100 Britons have travelled to assisted suicide clinics in Switzerland, and their loved ones face prosecution for accompanying them.
I'll die before the endgame, says Terry Pratchett in call for law to allow assisted suicides in UKI write this as someone who has, regrettably, become famous for having Alzheimer's. Although being famous is all the rage these days, it's fame I could do without.
I know enough to realise there will not be a cure within my lifetime and I know the later stages of the disease can be very unpleasant. Indeed, it's the most feared disease among the over-65s.
Naturally, I turn my attention to the future. There used to be a term known as 'mercy killing'. I cannot believe it ever had any force in law but it did, and still does, persist in the public consciousness, and in general the public consciousness gets it right.
We would not walk away from a man being attacked by a monster, and if we couldn't get the ravening beast off him we might well conclude that some instant means of less painful death would be preferable before the monster ate him alive...
I am enjoying my life to the full, and hope to continue for quite some time. But I also intend, before the endgame looms, to die sitting in a chair in my own garden with a glass of brandy in my hand and Thomas Tallis on the iPod - the latter because Thomas's music could lift even an atheist a little bit closer to Heaven - and perhaps a second brandy if there is time.
Oh, and since this is England I had better add: 'If wet, in the library.'
Who could say that is bad? Where is the evil here?
(via Forbidden Planet)
(Image: Terry Pratchett, Powell's, a Creative Commons Attribution licensed photo from Firepile's Flickr stream)
(Note: it takes something damned important to get me to link to the vile Daily Mail. This qualifies.)
- Terry Pratchett has rare, early-onset Alzheimer's - Boing Boing
- Match it For Pratchett! Raising £500000 for Alzheimer's research ...
- Pratchett donates $1 million to Alzheimer's research - Boing Boing
- Terry Pratchett fan-afghan -- the Pratchgan - Boing Boing
- Terry Pratchett gets a knighthood - Boing Boing
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oh god.
*is heartbroken*
"I am enjoying my life to the full, and hope to continue for quite some time." Go Terry!
I was extremely saddned to hear that Terry had been diagnosed with this terrible disease. I had a grandfather who succumbed as well, and I can tell you, the end stages are painful to deal with.
I remember having to pile in the car and go searching, because he had simply wandered away. We found him about a mile down the road, just walking along the highway. He didn't recognize any of us and struggled as we manuvered him into the car. We moved him into a care home shortly after.
Without getting into a political debate about these things, I would just like to say bravo to Terry for keeping his head up about the whole thing. He deserves to go out strong and with his charming sense of humor intact.
Best of luck, Terry.
That's going to be a sad day. But also I can't imagine how frustrated PTerry must be about people mourning him when he's Not Dead Yet. I'm kinda guilty of that myself, boo.
I'd ask for a Unicorn chaser but I just read Lords and Ladies, so a blood thirsty carnivorous unicorn might not be such a good idea for a chaser.
I'm in complete agreement with Terry. If I'm unlucky enough to get hit by the big forget, I'm going to check out. I'm not going to hang around.
I Aten't Dead
"degradpulsorying"?? WTF?
Oh, god, every time I even *think* of Terry's illness, and the fact that he may not be with us for much longer, I tear up.
Lately, I keep thinking of that "Speechless" print that was released after Mel Blac died-- you know, the one with all his characters standing around the spotlit microphone. Well, in my head now, I keep picturing a writing desk, with Sam and Sybil and Granny Weatherwax and all the rest standing around it, and a hat hanging on the empty chair. Augh, and I'm crying again.
Well, while there is not any cure for Alzheimers, there are some extremely effective drugs, and breakthroughs happening every day. I had a family member go from being completely incoherent to completely normal almost overnight after switching to a new drug, and so I wouldn't be so quick to choose the irreversible option of death.
I read this the other day. Incredibly smart and moving.
Weird to be so tremendously fond of someone I'm never likely to so much as meet.
Doesn't he know that Authentic Human Dignity(tm) is degraded every time somebody doesn't die screaming in their own filth?
Moral Values(tm) require nothing less.
There are already clinics in Switzerland where doctor-assisted suicide is allowed (the legality in the rest of Europe is still being hotly debated). The battle goes on.
http://drvitelli.typepad.com/providentia/2008/12/no-charge-for-parents-in-assisted-suicide-case.html
http://drvitelli.typepad.com/providentia/2009/07/son-confesses-i-killed-my-mum.html
Good for him, and good for everyone that there's another high-profile advocate for the right to die. I'm sure that when he's ready he'll leave us with grace. The grandmother of a friend had alzheimers, and put a bottle of pills on her mantle with a note that said "If you can't remember why these are here, take them all." And one day she did. Really heartbreaking and traumatic for the family, but also kind of triumphant. I know it's definitely one of the things I fear more than death (although I'm in my 20s, so what the fuck do I know).
I just realised today that you can basically learn everything you ever need to know about the human condition by just reading the works of Mr. Pratchett.
Slightly pedantic point: there's a lot of talk right now about 'legalising suicide' in the UK. Suicide is legal here (at least under English law, not sure about Scottish), and has been since the '60s. It's assisting suicide which is a criminal offence, and that is what the fuss is about.
It's been ages since I read Prachett as a young man. I think I need to go back and revisit his writing.
Here in Washington we recently legalized assisted suicide via the Death With Dignity Act. It's been on the books long enough now where conversations about it are being revisited. A recent local NPR show (The Conversation) interviewed an Oregon official regarding their similar law which has been in place for 10 years. In Oregon those who have chosen to exercise their right to die the majority have been caucasian and well educated. The stats have not born out the fear mongering presented by those oposed to the laws (the idea that it will be used to kill the poor or minorities). Hopefully others will begin to learn from this growing data.
I hope Prachett is himself for quite a bit longer and when the time finally comes I hope he enjoys a glass of the finest brandy.
Now if you'll excuse me I've got a box of books to go dig out.
As someone with relatives dying of altzheimers, I wish that society felt more able to talk about these issues.
It's a horrible disease to die from, mostly because people don't realise or admit that there's a problem. You can see the fear in their eyes though, when for a fraction of a second they realise they don't know who they're speaking to or where they are.
Then it normally turns to anger as they are understandably upset about strangers being in their home and claiming to be their relatives or claiming that they want to help when obviously nothing is wrong with them (the brain's ability to lie to itself is incredible)!
I (selfishly) hope that by the time I'm old enough to get it, someone has worked out a cure.
God has spoken!
Cory, if you hate something enough, it becomes stronger! (says Carl Jung)
May the Daily Mail grow :P
Is it too much to ask that this man be allowed to die like a dog?
And for those wondering about Mr Doctorow's precise importance threshold, here is a selection of his other posts linking to the Daily Mail:
RC helicopter used to smuggle contraband (?) into prison
Brit Olympic athletes forced to sign gag-agreements on China criticism
UK local governments use anti-terror spying powers to catch litterbugs and
people who put out trash early
Pedo-crazed parents call father a "pervert" for photographing his own children at a park
Klingon knife scares the crap out of dumb British scandal-sheet
"someone who has, regrettably, become famous for having Alzheimer's."
No, sir. You were (and are) a hero to very many, well before that.
Very sad stuff. Reminds me of the Sue Rodriguez case in Canada, one of the most significant legal cases of the past two decades, and one of the most fiercely debated.
http://archives.cbc.ca/politics/rights_freedoms/topics/1135/
Even though the courts said she could not legally have assisted suicide, she found someone to do it. Nobody was prosecuted for it.
#7 I thought the same thing!
Probably a cut-paste error, but degradpulsorying seems sort of plausible as a word meaning "degrading because you were forced".
Maybe Sir Terry can add coining that phrase to the list of things for which he's famous, other than having Alzheimer's disease.
Bravo, Mr. Pratchett. May the day be far off, but when it comes, I too believe that the right to one's own life, up to and including ending it, is the most fundamental human right of all. Without that, all other freedoms pale.
'If wet, in the library.'
what does this mean?
I realize this is an emotional/political issue, but maybe I could raise a voice of concern here:
Elderly patients are the most expensive for health insurance corporations. Legalizing assisted suicide creates a situation where there is now a profit motive to encourage people to kill themselves.
Corporations have certainly shown themselves to be amoral in the past. I don't see why they would act differently in this case.
And these patients may not be in the best state of mind (dementia, Alzheimer's, etc.) to resist such persuasion.
This may be a talking point of the opposition, but I think it's a concern that should be addressed.
#11, it's not that hotly debated, I think. According to the Ultimate Authority, Wikipedia, it's legal in Belgium, Luxembourg, The Netherlands and Switzerland.
I'm not sure about Belgium and Luxembourg, but I do remember the great fuss there was when The Netherlands announced its legalisation in 2002. Odd, since I think Dignitas has been operating longer than that, but... anyway.
It seems to me that one of the Catch-22s about this terrible disease is that by the time it progresses to the point where life is no longer worth living you might not be lucid enough to actually carry out the suicide.
Terry Pratchett is wrong when he says that he knows there will be no cure for his illness within his lifetime. I work in biotech and pharma and the field is changing much faster than anyone can track right now. The event horizon is about two years away. Alzheimer's is a slow disease. He may have ten or more natural years yet. That's five times the speed of revolution. The evil here is that Terry has already given up hope. We must not despair, even in the face of overwhelming odds.
I also agree that assisted suicide is a very scare thing. In many cases it would be very hard to prove whether an "assist" was really desired by the deceased. What we really need is better palliative care, and a culture that values it highly. Beliefs may differ on whether one goes straight to hell upon committing suicide, but you certainly have no right to take anyone with you.
Brainspore - that's why many patients get a friend, or a doctor, to agree to it while they still can make such a decision. They say "Once I can't leave my bed and forget those I love, let me die." The problem is that it's murder for the other person (by law).
And #22, you're absolutely right. It is definitely a concern, and that's what the judges worried about in the Rodriguez case I mentioned earlier. However, I think what needs to happen is to set up some sort of regulatory body where a person, in the early stages of illness, can sign a document agreeing to assisted suicide, but one that is completely their own decision. However, it would be awfully hard to implement.
As someone who watched his Grandfather die of Parkinson's coupled with dementia and his Grandmother die of Alzheimer's I will always be fully in support of any "right to die" legislation. Neither of my grandparents chose to go that route, but I know that my grandmother said that it comforted her knowing that the option was there.
As someone who is hereditarily predisposed to both diseases I'm damned glad that I live in Oregon. AFAIK the only state in the U.S.A. where assisted suicide is legal. If/when the time comes that my mind goes then I will not be here any more and would rather take my body with me than leave it tottering about for an extra couple of years.
I strongly disagree with Sir Pratchett's choice. I believe that giving up, even against impossible odds, is never admirable or right. That said; I fully support his right to make that decision for himself. I think that Sir Pratchett believes that this is the right decision for himself at least as strongly as I believe he is wrong. Whoever is right, I do know that it is a far greater crime to tell another person how to live, or die.
I love Terry and can only wish him and his family the best and that their wishes be respected.
Terry Pratchetts books single handedly gave me the balls to question my faith and the world around me and realize my own sneaking suspicion of the prevailing stupidity of it all was not a figment of my imagination.
I WANT to celebrate him while alive and continue doing so after he passes on which I hope is eons from now, but the idea of losing such a guy who impacted my life so much fucking kills me.
dear terry, i don't know if you are reading these comments or not, but i would like to turn you on to several studies, one in particular, that show that cannabinoids are very effective in stopping and destrouying the amyloid plaque that is the cause of this horrible disease. please read these findings, then catch the eurail to amsterdam! we want u around much much longer! http://the-reaction.blogspot.com/2009/01/cannabis-cure-for-alzheimers.html
Interestingly, "Do not resuscitate" orders have been accepted by healthcare providers in the UK for some time.
It's not really as dignified as true euthanasia (you have to go into cardiac or respiratory arrest before it kicks in), but it is a step in the direction of giving people the choice of when to die.
Why does everyone assume a life less glorious than the one we expect (and the one we fool ourselves into believing we have) has no value. My step father has the big A and has limited social interaction skills etc and is clearly "less" than he previously was (pissing in plant pots and no short term memory) . If he started life in the state he is in or achieved that state at the age of 10 years old would we consider it dignified and brave to cull him from the pack and do we consider it noble when angst ridden emotionally damged teenagers self harm/suicide - are they freeing us (society) from having to endure the burden of their future damaged selves? My step father (David) has value, is loved, and is needed and seems pretty happy - the big A is under medicated control and to deny his exsistence as a failure that needs to be euthanized away is is to belittle a man I care about, the big A may be terminal but so's life. Dont write-off a life that falters at the end as a failure. This is what we are.
@ #30. 'The evil here is that Terry has already given up hope.'
Great those is your beliefs, not his. Your freedom ends where his begin. What is tragic or in-humane about accepting what is happening to your body and accepting mortality on your own terms? Everyone dies, does everyone truly live? Doing things because others have told you what is right and wrong - is that living?
Does anyone see the similarities between modern medical science (breathing machines, electric paddles) and necromancy. Isn't more un-natural to keep people alive through artificial means than to allow them to die, live naturally? It is something that becomes more striking to me every passing year. In an overpopulated world, who needs resources more - the elderly or the children?
@#26: British invitations to events which take place outside often give an alternative venue in case of inclement (look it up) weather.
In this case: if fine in the garden, if wet in the library.
I can't believe I just explained that, I must be bored.
My step father (David) has value, is loved, and is needed and seems pretty happy
And yet, other Alzheimer's patients scream in terror all day and night, claw at themselves and everybody else, and need to be tied down 24 hours per day. They have to be force fed. They're incontinent. They have bedsores. You don't know about them because they're institutionalized. You're lucky that your stepfather isn't in that state, but other people are, and he may yet be.
@ #30. 'The evil here is that Terry has already given up hope.'
Evil is a religious word. pTerry's an athiest.
pTerry did a documentary ("Living with Alzheimers") on the progress of treatment, and saw that while we're getting closer, the experts were all saying phrases that boiled down to "give us money to help", and none were able to give him the impression that a cure is in sight.
That of course, didn't stop him from giving money to help, but he's smart enough to think that he won't be 'him' by the time it's found.
You know, just as a reference point ... According to Wiki, Sir Pratchett was born in 1948. That makes him merely 2 years older than the director John Hughes, who many people say that he "died too young" of a heart attack yesterday, at 59.
When the Reavers begin to carry me away, it's my prayer that someone will extinguish my candle without applying for permission. (I don't give a good gorram about the propriety.)
Nitpick, but it's bothering me: the correct form is "Sir Terry."
I am sure Sir Terry would be delighted if he's wrong about the timeframe, and they find a cure, or even a treatment that stops further decline, in time to benefit him.
Also: there's a low-key project to match his half-million-pound donation to Alzheimer's research, Match It for Pratchett.
to the foolish and insolent that suggest Terry has "given up hope" or "lacks courage" and other such nonsense: if you are very lucky and try as hard as he has, you may one day come to wisdom and understand what real courage actually is. But I doubt it.
http://www.youtube.com/watch?v=mvu0lrliPW0
He should have the right. We all should. Poor pratchett. I love his work and I know how terrible it could be to lose such a mind, if anything should have control over his brains it should be him, not his disease.
If you're coping with a loved one with Alzheimer's, maybe you should read this.
As my mother worsened, my sister couldn't cope any more, and he she finally agreed to let Mom come live here with Cat, Peter and I.
We had a wonderful time, and Mom's last 8 months were filled with laughter. Why? We quit correcting her, and we all learned to laugh at the silliness. She was always upbeat and good natured, and stayed that way until she died.
Oh, it got a little creepy sometimes because she kept thinking I was Dad (who was 5 years gone already), but we gave her nothing but love and we got thru it.
If you're coping with this awful disease, keep it light and just give them love. Don't bicker. Be agreable, do things they enjoy and stop correcting them- the friction makes them paranoid and uncomfortable. Be sweet and tolerant for the time that remains.
#38
You're making a shotgun argument. Every part about culling mentally handicapped people from the pack or removing burdens from society has nothing to do with the actual subject at hand. The part about suicidal teenagers is somewhat relevant, but only somewhat. The reason why it's tragic when teenagers kill themselves is because we know that in a couple of years the hormones and the challenges that were making them so miserable would have passed. In other words, things are almost guaranteed to get better for them. For an Alzheimer's sufferer the exact reverse is true.
However, I will respond to the bit about someone removing themselves as a burden. That's not what this is about. Sir Terry has more than enough money to put himself in the best nursing home from now until should he live to be 124. It's about dignity, about self-respect, and about freedom of choice. He chooses not to become a shattered, screaming, incoherent shell of the brilliant, witty, imaginative man he is today. He has the right to make that choice. Anyone has a right to disagree with him for making it. No one has a right to take that choice away from him.
Note: To those whose argument against assisted suicide is "Insurance companies will start executing everyone who reaches 50 because they're all money-grubbing bastards!" There's a difference between the sort of wrongful death suits that get filed against insurance companies today, and the murder prosecution the heads of those companies would face the second there was a forced suicide. Those guys aren't stupid, they'd rather shell out a few hundred thousand dollars to take care of an elderly person or find ways to cut their benefits than run the risk of either going to jail or the insane negative publicity that would follow them becoming Murder Corp.
I know a lot about dementia. I have studied it extensively, and my current study involves extensive neuropsychological testing of people with Alzheimer's. Granted, all these people are at the "mild" end (as if their problems could be called mild), but they have all been relatively happy, some deny any sort of memory problem.
What I am trying to get at is that dementia, all types including Alzheimer's, are progressive and degenerative. If the person does not die from another health problem, they will become more and more dependent, more and more child-like, and will be less and less like the person they were before the disease. But when is the right time to die? By the time a person is screaming all day and wearing diapers they are incompetent of giving consent to anything. While they are still competent I suspect only a small percentage would say they want to die (those likely with depression) - whether or not they stated they wanted to die while still well enough to make that decision.
It's tough. I don't see the answer.
Now on to Dad:
He was seeing a chiropractor for several years for lower back pain. Finally the chiropractor told him to see an MD. Cancer. From the bottom up- way past treatment.
He withered quickly, this big strong man whom I had never seen sick, ever. Never heard him mention any pain or discomfort. Then he seemed to go from 60 to 90 in a couple months. The cancer ate away at him, the pain got so unbearable that he went in his bathroom, wrapped a towel around the pistol in his shaking hand, and shot himself thru the chin.
He didn't die.
It blew out his jaw and the left side of his head.
That dear man had enough humor in him that he told my brother "I couldn't even get that one thing right!"
They drugged him into a coma and let him slowly starve to death.
@ #40: It's exactly your type of post that shows what we are being protected from when 'assisted suicide' is not sanctioned; the type of person who wants a neat ending, a tidy-up of those who are imperfect, a person confident that they can fix life's ledger. Can you hear yourself talk in terms of medicine being 'artificial means', on overpopulation, natural resources, and most importantly, the value of people being able to be measured according to their age? We are all in this together and we don't eat our dead.
#46 : Of course, you're right. Sorry. I should have known better.
@Trent
I'm sorry if I got a little "heavy" there... I hadn't really wept over the loss of either of my beloved parents until I started writing it, then "Niagara Falls!", to quote Buster Poindexter (Ghost of Christmas Past). So I guess I needed that.
have travelled to assisted suicide clinics in Switzerland, and their loved ones face prosecution for accompanying them
What is the matter with the Brits? Their penal codes so often seem to be more stupid than even those in the U.S.
Deciding when someone else 'should' die is impossible, for me, and misses the point entirely. Same with the 'age' criterion.
Since we have the knowledge on how to reduce suffering, it seems like a moral imperative to make sure that knowledge is available in a complete and balanced format.
So, if the future holds increasing suffering without yield, then it seems unethical to prevent someone from deciding to end that suffering and offering that knowledge.
You could argue that we don't know what the suffering is like until we are there and we can never predict that the suffering will increase continuously, but I think people with terminal illnesses seem to appreciate these issues but respect the choice, for the most part.
Dementia is more difficult, since the decline of the cognitive faculties may or may not lead to day-to-day suffering.
This is an important issue and I'm glad Sir Terry and boingboing are highlighting it.
While I am (again) posting late, I would recommend looking into diatomaceous earth to take a few heavy metals out of the body and lessen the impact of the symptoms that have already appeared. While this has been shown anecdotally effective, I don't know of any wider studies. Make sure to take with plenty of water.
Also, in any right-to-die debate, the wider argument of the terminally ill and then those in constant pain are brought up. While I am still on the side of allowing provisions for assisted suicide, I put forth the caveat that it must be determined that it is not a pain management issue. If assisted suicide is too 'easy' it might become too attractive for doctors, health plans and relatives to maneuver towards an assisted suicide instead of costlier long-term care. Slippery slope and all that. It should be made as accessible as necessary but no easier.
One problem with assisted suicide that no one has mentioned is that not all family members will feel the same way at any given point in the process of a loved one dying.
When one of my uncles, who had been an alcoholic for 60 years, was dying of liver failure, his daughter whom he had raped when she was young made the decision to remove life support. My mother, his sister, thought his daughter had been entirely too hasty in making that choice.
When her own time to die came it became clear that she was unable to accept the fact that her time had come to an end. Her unwillingness to see anyone else die was simply her inability to accept her own mortality.
Terry strikes me as willing to face the reality of death. I admire his choice of Thomas Tallis as the musical coda to his life.
Speaking of death: most sadly, the Reaper has taken Mink deVille....RIP:
http://www.youtube.com/watch?v=p8kQvmR8r2U
i must be dreaming....
"And I am not frightened of dying, anytime will do, I don't mind.. There's no reason to be frightened of it, you've got to go sometime." No surprise that it was spoken by an insane person.
Whether you are or are not frightened of dying is up to your own experience. I do not begrudge anyone their chosen pain relief, nor do I begrudge anyone their control over their own destiny. If choosing to exert control over the end of one's own life gives this good man, or any other good person, solace and relief from pain.. so be it.
http://rawstory.com/blog/2009/08/video-ohio-cop-bodyslams-knife-wielding-grandma/
I always find it really odd that there's some things that other people say we can't do to ourselves, especially when it has no effect whatsoever on the people who are telling us we can't do them.
I've met Terry twice at book signings. A gentlemen, entertainer, genius observer of the human condition, and funny. A noble spirit that deserves to be spared from the monster attacking him.
Assisted suicide is a civilisized right. If someone doesn't want to endure the last stages of a serious illness, it's inhuman not to give them that peace. It's more barbaric to stop this legally in the name of religion or god.
"Not to give up even against impossible odds." This is pure nonsense.
People should be able to end their own lives, only because they chose to, let alone extreme health situation.