"I live in hope I can jump before I am pushed."

August 3, 2009 11:44 AM

Terry Pratchett: I'll die before the endgame
posted by Artw (74 comments total)

Previously
posted by Artw at 11:49 AM on August 3, 2009 [1 favorite]

Well said Sir Terry (esp. "If wet, in the library").
Interesting post on Foreign Policy's blog a while back noting that as things stand there's class discrimination in who gets access to a dignified death as well.
posted by Abiezer at 11:51 AM on August 3, 2009 [3 favorites]

Man, the possibility of terminal illness creeps me out. I honestly haven't thought nearly hard enough about whether a logical suicide would be the best choice, but I know I don't want to be bed-ridden, pain-wracked, or even worse, forget everything that I love and live my final years in a constant haze of confusion.

I like Pratchett's quote, He said he had no doubt that there were people with a 'passion for caring', but asked them to accept there are people 'who have a burning passion not to need to be cared for'.

Yeah, I think that sounds about right.
posted by scrutiny at 11:54 AM on August 3, 2009 [5 favorites]

Degradpulsorying?
posted by ooga_booga at 12:04 PM on August 3, 2009 [8 favorites]

Plus, the Law Lords sound like evil Dr. Who villains.
posted by ooga_booga at 12:04 PM on August 3, 2009 [15 favorites]

I'm glad someone so humane and eloquent is there to make that case.

At my age, I'm likely to go suddenly, or after a prolonged horrible illness. I'd prefer to go after the prolonged bit and just before the horrible bit. And I don't want someone close to me to be faced with prosecution for helping me with that if I can't sort it myself. I especially don't want to sort it myself if a professional can think about that stuff and leave me to enjoy my last days in peace.

When Sir Terry goes, he isn't getting a dot from me but a round of applause.
posted by Wrinkled Stumpskin at 12:05 PM on August 3, 2009 [1 favorite]

Yesterday my nurse at work was telling me about a patient she used to take care of. He had a tattoo on his chest that said "FUCK YOU FOR DOING CPR". Apparently he wanted a DNR but his family refused to allow him to die. He said that his greatest hope was to "die alone" so nobody will try to bring him back.

After being involved in the healthcare industry, I've already made my choice. My personal "line" is when I'm too sick to go to the bathroom by myself. If theres a fighting chance I'll get better, thats one thing. But if I'm going to spend a few extra years having my butt wiped and peepee washed by angry ill-paid CNA's, I'd rather just not live anymore.

I wish Terry the best and hope that he dies with dignity, on his own terms.
posted by Avenger at 12:06 PM on August 3, 2009 [7 favorites]

Diapers, too. I'm not going to sit in my own shit until someone changes me just so I can keep breathing for a couple of extra years. That's ridiculous.
posted by Avenger at 12:12 PM on August 3, 2009 [1 favorite]

This is the first article I've ever read linked on MeFi that has actually made me cry, both because of the enormous amount of respect and admiration I have for Mr. Pratchett, and because I know that someday I'll have to live in a world without him.
posted by DulcineaX at 12:16 PM on August 3, 2009 [12 favorites]

Sir Terry, who was knighted in the 2009 New Year Honours, said in an article in the Mail on Sunday: 'I 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.

'Oh, and since this is England, I had better add, "If wet, in the library". Who could say that this is bad?'

An unnamed respondent was quoted as saying

NOT ME, BUT THEN, IF I HAVE MY WAY HE'LL BE WAITING A LONG, LONG TIME BEFORE HE DRINKS THAT GLASS.

His diminutive, similarly dressed companion then added,

SQUEAK
posted by quin at 12:20 PM on August 3, 2009 [123 favorites]

I want the option to kill myself before I have to change my father's diapers.
posted by No1UKnow at 12:23 PM on August 3, 2009 [4 favorites]

The Lords ruled on Thursday that the Director of Public Prosecutions must give Mrs Purdy, who has multiple sclerosis, guidance on whether her husband will face prosecution - and a possible 14-year prison sentence - if he helps her travel to the Dignitas clinic in Zurich to die.

I'm all for assisted suicide, but man, the name 'Dignitas' gives me the jibblies. Brrr! Very Big-Brother-euphemism sounding.

I don't know what the best name for the place would be, but even the Center for Suicide Assistance sounds way better.
posted by ignignokt at 12:23 PM on August 3, 2009

Salute.
posted by WPW at 12:26 PM on August 3, 2009

I adore Terry Pratchett, and have for years, but I've never wanted to give him a great big bear hug more than I do right now.

I know that when Granny Weatherwax meets Death for the final time, she'll be damn good and ready for him, and she'll greet him on her own turf. I hope Pterry has the same opportunity.

Damn, but I love that man.
posted by Faint of Butt at 12:34 PM on August 3, 2009 [2 favorites]

That was really moving and heartbreaking. I hope he is allowed to die as he pleases, a final and basic human right that should be given to all.
posted by mygothlaundry at 12:37 PM on August 3, 2009 [1 favorite]

well:


.
posted by krautland at 12:40 PM on August 3, 2009

I'm all for assisted suicide, but man, the name 'Dignitas' gives me the jibblies. Brrr! Very Big-Brother-euphemism sounding.

Agreed. Totally recalls Quietus from "Children of Men."
posted by jbickers at 12:42 PM on August 3, 2009

My friend's mother died at Dignitas in 2004. She suffered from a degenerative disease that basically shut everything down, at the end she was totally reliant on help from others. There was a court case to stop them travelling to Switzerland which made the press, but there was an injunction on reporting their names. Whilst the court hearings were going on and after she had died my friend and her father were tracked for a week or so by reporters from the fucking Daily Mail. Sitting outside their house, following them to the shops and calling repeatedly. I can only imagine what these people went through, not only seeing their mother slip away from them over the years, having to go through the pain of watching her die and being stalked by the Daily Fucking Mail, before, during and after the process.

On the day the injunction was lifted, around a year later, guess who called? Yup, the Mail with an opportunity to "tell their side of the story". They offered money, which was sorely needed after everything the family had been through, so the father accepted. The article itself isn't too bad and does stick to the facts fairly well. But just remember, this tear-jerking article on Sir Terry appears in a newspaper that shows no respect to families involved in this painful situation and when Terry Pratchett dies, you can be sure they'll be hanging round like the fucking vultures they are to pick on scraps of pain and emotion for their fucking newspaper.
posted by jontyjago at 12:49 PM on August 3, 2009 [49 favorites]

WHAT CAN THE HARVEST HOPE FOR, IF NOT FOR THE CARE OF THE REAPER MAN.
posted by prufrock at 12:51 PM on August 3, 2009 [19 favorites]

'I 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.

And what a life-affirming thing to say! Each of our lives is our own, and if we don't have the power to choose the means and time of exit should we be faced with terminal illness or other horrific circumstance, what freedom can we really be said to have?

How on earth is it possibly considered even remotely moral to tell someone, 'no, you MUST suffer, no matter how awful it gets, and no matter how absent the hope of recovery may be'??

I had a lot of admiration for Pratchett as a terrific writer, but now I have a great deal for him as a human being, both for the courage to want to end his life on his terms, and for speaking up so eloquently for himself and everyone else.
posted by LooseFilter at 12:53 PM on August 3, 2009 [8 favorites]

degradpulsorying adj. Degrading and compulsory. Thank you Mr Pratchett for helping relieve people of this degradpulsorying burden.
posted by East Manitoba Regional Junior Kabaddi Champion '94 at 12:55 PM on August 3, 2009 [8 favorites]

The time bomb in my family is that my father is firmly in favour of euthanasia and has written a so-called "living will" which makes this quite clear. Unfortunately, for sincer religious reasons, my sibling is completely opposed. I have no doubt that when the time comes there is going to be an ENORMOUS shitfight.
posted by i_am_joe's_spleen at 1:00 PM on August 3, 2009

I mean to fight death as long as I can. I worry that assisted suicide may start including people who are retarded or mentally ill, people who can't afford decent care, people whose organs are valuable.

But Alzheimers is so cruel, and I've seen what it does, that Terry Pratchett should be allowed to specify that when his condition reaches a certain point, life support should cease, and pain should not be allowed. It's desperately unfair that he should lose lucid days so that he can be sure not to end up a quarrelsome, moaning, incontinent wretch, whose family must see him decline. I watched this happen to someone I care about, and I swear there was a part of her hating it with every fiber of her being. Being glad when someone's body is released, by death, to join their spirit, is truly terrible. Good luck, Terry, I hope you get a chance to live every day you can, and then go on your way.
posted by theora55 at 1:00 PM on August 3, 2009 [4 favorites]

I appreciate the sentiment and even agree with it but I know that every single one of the uncrossable lines I have drawn in my life, for one reason or another, I have chosen to cross when I actually got to them.

What Terry says now may not be what Terry says when the time comes.

This is one of the huge quandaries with living wills. Ask an able bodied person if they would want to die if they were paralyzed and the answer is almost always yes. Ask paralyzed people and they almost always want to live.

So I fully support the pursuit of the right to choose but I suspect most people won't actually exercise it. Even those who are facing serious disability.
posted by srboisvert at 1:04 PM on August 3, 2009 [6 favorites]

Ask paralyzed people and they almost always want to live.

I understand, and of course no-one who can express their desire for life should have their wishes overridden. But for those people who are trapped and can no longer express themselves... I think most of them would maintain their previous opinion.
posted by East Manitoba Regional Junior Kabaddi Champion '94 at 1:09 PM on August 3, 2009 [2 favorites]

Sure, but disability is completely different from total incapacity, which is what Alzheimer's does to you. I watched a friend die from cancer. At the end she could not speak, her face was hollow, she was yellow with jaundice, her abdomen bloated. Her last recognizably (to us) lucid moments, a few days before the end, were wracked with pain. I am haunted by the idea that as she lingered, unable to communicate, she still felt that pain from time to time until her death. We never discussed assisted suicide, perhaps because it wasn't a legal option and she would not have exposed her family or friends to such legal jeopardy. I don't know if she wanted to die, or if she clung to every breath despite the pain. I just wish she had had the option to leave on her own terms.
posted by Mister_A at 1:10 PM on August 3, 2009 [1 favorite]

A good article, a worthy addition to the debate. I hope it will help push public opinion even further toward acceptence of assisted suicide, though it's clear that the case has already been persuasive, at least in regards to those with terminal illnesses. It's unknown how the law is going to settle in the next few months and year due to the recent legal ruling, but if high profile people can keep putting the issue into the public sphere then lawmakers won't be able to ignore it.

Terry in his Wiltshire garden with a brandy - the way he would like to be able to spend his final conscious moments.

I hope Terry Pratchett can get his wish. Sounds like a nice way to say goodbye to the world. Free gardens and brandy to all terminally ill people!
posted by Sova at 1:14 PM on August 3, 2009

What Terry says now may not be what Terry says when the time comes.

This is one of the huge quandaries with living wills. Ask an able bodied person if they would want to die if they were paralyzed and the answer is almost always yes. Ask paralyzed people and they almost always want to live.

True enough, but there's a huge difference between physical and mental disabilities, isn't there? No one feels the need for a living will to say that they should be offed if they are physically disabled because they know that they'll be able to make that decision (laws permitting) when the time comes. The point about Alzheimers is not that "what Terry says now my not be what Terry says when the time comes" but that "who Terry is now may not be who Terry is when the time comes."

Does a drooling wreck of your self have the right to overturn the decisions you made in your lucid past? We do not grant people who are sufficiently impaired by Alzheimers the right to determine their own fates or living conditions in other ways (they don't get to choose where to live, how to live, when to eat, what to eat etc. etc.); why should we grant them a veto on the terms of a living will?
posted by yoink at 1:19 PM on August 3, 2009 [13 favorites]

I worry that assisted suicide may start including people who are retarded or mentally ill, people who can't afford decent care, people whose organs are valuable.

But Alzheimers is so cruel, and I've seen what it does, that Terry Pratchett should be allowed to specify that when his condition reaches a certain point, life support should cease, and pain should not be allowed. It's desperately unfair that he should lose lucid days so that he can be sure not to end up a quarrelsome, moaning, incontinent wretch, whose family must see him decline.

This is such a difficult subject, and Alzheimer's such a difficult and painful condition. Isn't the worst of it, to many of us, though, the dementia aspect? The imposition of mental illness (in the most literal sense of the words) punctuated by moments of clarity, essentially, on a previously largely-healthy mind and intellect?

And then, as someone who has known well a number of people with diagnosed and in some cases debilitating mental illness punctuated with moments of clarity as well as a number of high-functioning mentally disabled people (organically or through trauma), I have to wonder if it's truly kind or just to exclude them from the pool of people legally permitted to take their own lives, or any more so than allowing them that freedom when allowing it to others. I hink it would be unconscionable and object strenuously to encouraging suicide, assisted or otherwise, to anyone, for any reason, but I don't know that any adult should be barred from making an informed choice about this for themselves.
posted by notashroom at 1:27 PM on August 3, 2009

My grandfather died of ALS when I was three. Apparently, when he was first diagnosed and was told how things would come to an end, he told his second wife that she was not allowed to put him on a respirator or any such thing that would keep him alive past a certain point. He expressly told both her and my mother, that should the time come, if she heard him choking and gasping for breath, she should take a walk. He didn't want her to have to sit there and listen to him pass away and knew if she had to, she wouldn't be able to help but call for help.

As he wished, one day she was cleaning and going about her daily routine and she heard him choking in the bedroom. She went into the room, and told him she was going for a walk. He blinked once for yes, which had been their sign for a while, and she left. She walked down to the corner payphone and called my grandmother, his first wife. The two women who married him, sat on a bench for an hour chatting about everything but the man they had married. Then they walked back to the house, and began the process of dealing with his death.

I can't imagine how hard it must have been for her to follow his wishes, or how hard it was for my grandmother to sit there with her and do the same. But I can only hope that when my time comes, someone loves me enough to go for a walk.
posted by teleri025 at 1:28 PM on August 3, 2009 [135 favorites]

*sob* The last thing I want to think about is Terry Pratchett dying! I can't face it.

That having been said, as someone who regularly takes away people's right to commit suicide by commiting them to psychiatric hospitals to treat their mental illness, I am torn.

On the one hand, I absolutely agree with Pterry here and am terrified both of ever being in that situation myself and also facing it with my mother, having been through it with my grandmother. On the other hand, lots of people with chronic conditions suffer severe depression and have periods of suicidal ideation and later change their minds. I mean, yes, I suppose it's different if someone has a terminal illness, but at what point do we let someone go? Pterry is talking as if he hopes to kill himself at some point when he still has full prescence of his faculties, but in that case wouldn't it not be necessary (yet)? I suppose, for me, it all comes down to who makes the decision. And what criteria will they use to make it? If someone is in extreme pain, is that reason enough? What if someone is in pain, but not terminal? People with chronic pain conditions (like myself) often become suicidal due to their pain. Should we allow them to end their pain?

It's a very complicated issue and one that will raise a ton of legal challenges no matter what.

I meant I have chronic pain, not that I'm suicidal, just to be clear.
posted by threeturtles at 1:33 PM on August 3, 2009 [1 favorite]

What if someone is in pain, but not terminal? People with chronic pain conditions (like myself) often become suicidal due to their pain. Should we allow them to end their pain?

I can't think of any argument that would persuade me that I have a right to sentence another human being to a life of endless pain if they themselves don't feel willing to endure it.
posted by yoink at 1:35 PM on August 3, 2009 [14 favorites]

Totally recalls Quietus from "Children of Men."

That might be what I was unconsciously recalling. Man, that was a creepy package.
posted by ignignokt at 1:49 PM on August 3, 2009

What if someone is in pain, but not terminal? People with chronic pain conditions (like myself) often become suicidal due to their pain. Should we allow them to end their pain?

Discussions like this are always difficult, because both sides can think of "what if"s. I know you're not taking a side, but rather expressing your ambivalence on the topic. But I find examples like this one less than compelling for a couple of reasons. firstly, it's a kind of slippery slope argument, in that it takes the stated premise (terminally ill people should have the option to end their suffering) and extends it beyond what anyone has called for (people who are not terminally ill should have the option to end their suffering.) as much as I'd like to compare the two cases thanks to the extremity of their suffering, the difference is very real. being able to predict an end to the suffering is very different (even if the pain is such that - in the moment - you can't see it ever ending) from reasonably predicting the remainder of your life being filled with such suffering. secondly, there's the matter of enforcement. if someone of able mind and body wishes to kill themselves, you can't stop them. they will eventually manage it, given time. if someone suffers from something that will eventually disable them, either mentally or physically, then you can absolutely prevent them from killing themselves. it's all well and good to say "if someone who suffers from intense, suicidally strong migraines doesn't get euthenasia, then neither should someone who suffers from alzheimers," but the migraine sufferer can still kill himself if he wants, where the alzheimers patient, at an advanced enough stage, can be prevented. it may be illegal for both of them, but only one of them has to live with the consequences of that law, and that makes the playing field decidedly less even than comparisons like the one you made at first seem.
posted by shmegegge at 2:05 PM on August 3, 2009 [4 favorites]

...as someone who regularly takes away people's right to commit suicide by commiting them to psychiatric hospitals to treat their mental illness, I am torn.

Since you are in the profession, you know that the problem is that mentally ill is that their wishes to die are transitory or fleeting. Perhaps with appropriate due process we could distinguish between the rational and the desperate.
posted by borges at 2:11 PM on August 3, 2009 [1 favorite]

Man, I was not really hoping to think about Terry Pratchett dying today.
posted by Pope Guilty at 2:26 PM on August 3, 2009 [2 favorites]

I'm all for assisted suicide, but man, the name 'Dignitas' gives me the jibblies. Brrr! Very Big-Brother-euphemism sounding.

You think that's bad, there's a national chain of funeral homes called Dignity™.

That's right, they assert a trademark on "dignity" for cryin' out loud. Are they going to sue for infringment every time a death with dignity law passes, or just sit back and enjoy the free advertising?
posted by George_Spiggott at 2:34 PM on August 3, 2009

Constant pain, without hope of relief or healing, can make life a hell. My mom died this year after two years of infections and heart problems that stole all enjoyment from her life; I think the final infection that took her did so partly because she wanted so badly to go.

I don't know if laws like these would have kept that from happening, but the knowledge that she could go if she really wanted to, peacefully and painlessly, might ironically have lifted some of the depression and fear that made her pain worse. It might at least have given me time to get to her bedside and say goodbye.

If I were diagnosed with Alzheimer's or ALS, I would stockpile pills immediately and without a moment's hesitation, and take my life at a point when I was ready and alone, so that my loved ones would not be culpable. But how much better would it be to be able to die with them there, peacefully? We are so cruel to the ones we say we love.
posted by emjaybee at 2:52 PM on August 3, 2009 [2 favorites]

What could be more sensible?
posted by toppermost at 3:05 PM on August 3, 2009

In the morning, when he was already so weak that he could no longer speak, he had written on a sheet of paper: "LSD-try it-intramuscular-100 mmg." Mrs. Huxley understood what was meant by this, and ignoring the misgivings of the attending physician, she gave him, with her own hand, the desired injection-she let him have the moksha medicine...

RIP Aldous Huxley.
posted by loquacious at 3:14 PM on August 3, 2009 [5 favorites]

Listening to Thomas Tallis while reading the article. I can imagine worse ways to go than sitting in a garden listening to Sanctus; When dying I imagine going over-the-top with the choir is just the thing.

But damn, imagining that there will be no more Discworld novels is depressing. Brain-vats can't be invented soon enough…
posted by monocultured at 4:02 PM on August 3, 2009 [1 favorite]

If I were diagnosed with Alzheimer's or ALS, I would stockpile pills immediately and without a moment's hesitation, and take my life at a point when I was ready and alone

But how would you know when you were "ready"? By the time you didn't have anything worth living for, you wouldn't be thinking rationally, and probably wouldn't remember where your pills where stored.
posted by delmoi at 4:07 PM on August 3, 2009

Unfortunately, for sincer religious reasons, my sibling is completely opposed. I have no doubt that when the time comes there is going to be an ENORMOUS shitfight.

Shitfight about what? There's no he said, she said situation here. Your father's wishes are abundantly clear and it'd take an absolute clusterfuck of justice to grant an injunction preventing your family from carrying them out.
posted by Talez at 4:13 PM on August 3, 2009

delmoi: But how would you know when you were "ready"? By the time you didn't have anything worth living for, you wouldn't be thinking rationally, and probably wouldn't remember where your pills where stored.

That might be true of Alzheimer's, but not ALS. ALS would just paralyze you to the point where you couldn't get at them.
posted by Mitrovarr at 4:18 PM on August 3, 2009

How on earth is it possibly considered even remotely moral to tell someone, 'no, you MUST suffer, no matter how awful it gets, and no matter how absent the hope of recovery may be'?

This is fundamentally (at least in my experience) a religious issue connected to the pro-life movement. Abortion is murdering the young for convenience, euthanasia is murdering the old for convenience. And suicide is suicide, so it's wrong.

I find it interesting that as medical technology advances, making it possible to dramatically extend the life of someone who would not survive for more than a few minutes sans intervention, the absolutist stance offers no way to decide, 'Should this be done?' The answer is always yes, and the more questionable the case (see Terry Schaivo), the more those who see things from that standpoint insist that, yes, it MUST be done! We MUST keep this person alive!

Their concept of human dignity and worth is tied to a sort of Hippocratic oath on steroids, and triage-esque decisions are nothing less than an assault on everyone's right to live.

It's really hard to have a discussion about these kinds of things when someone has that kind of approach, you know?
posted by verb at 4:20 PM on August 3, 2009 [2 favorites]

Right. The problem with killing yourself before the Alzheimer's/dementia really kicks in is, when is that going to happen? At what point can you still enjoy life before you have to choose to ah, beat the rush? Especially when you have to do it yourself because if you had help, that person could go to jail. It's a shame you can't just put it in your living will to have yourself quietly killed once your brain goes to mush. I bet Pterry has to ponder every single day, is this gonna be my last good day? Should I do it now? Can I finish another novel first?

I really hope they make assisted suicide legal before I come down with one of the family diseases. teleri: wow. Yeah, me too.

i am joe's spleen: who's in charge of your father? That's the person who will get to make the decision. If it's you and you follow your dad's wishes, great. If it's your sibling, uh...sucks to be your dad. I went through this with my dad, but I wasn't the one legally in charge, my mom was. It took her 2 years to agree to let him die. If your dad is still compos mentis, he'd better make sure whoever's in charge of him agrees with him.
posted by jenfullmoon at 4:23 PM on August 3, 2009

I was doing okay up until Quin's comment. Now I'm all tearing up and stuff.

I feel really sad and really happy for Pterry all at the same time.
posted by Spatch at 4:33 PM on August 3, 2009

I think "degradpulsorying" is a (strange) typo. There's a "pulsory" missing, two paragraphs later. Cut/paste mishap, maybe?
posted by Kalthare at 4:52 PM on August 3, 2009 [1 favorite]

Talez: first, getting to the point of needing to involve the legal system constitutes a severe family dispute, whether or not the law were clear about the status of living wills; second, as far as I know, so-called "advance directives" are not exactly settled law in NZ anyway; and third, the issue has already arisen with another family member whose palliative care was a matter of serious debate within the family.
posted by i_am_joe's_spleen at 4:54 PM on August 3, 2009

I've seen elderly people with Alzheimer's (or other forms of dementia), and those who, at an advanced age, still have control of their faculties. I wish I could say that ignorance really is bliss, and that the former really do seem happy and carefree despite their mental downward spiral, but that simply hasn't been the case in my own experience. There's bitterness and resentment for what's been lost.

I can fully understand Pratchett's desire, even need, to take control of his passing when the time comes.

*sigh*

If only, alongside the Assassins' Guild or perhaps down the street from Unseen University, there was a Guild for Humorous Fantasy Writers, where an awkward, gangly apprentice might someday be expected to step in for Sir Pterry, I could feel better about all this.
posted by misha at 5:00 PM on August 3, 2009 [1 favorite]

Talez: first, getting to the point of needing to involve the legal system constitutes a severe family dispute, whether or not the law were clear about the status of living wills; second, as far as I know, so-called "advance directives" are not exactly settled law in NZ anyway; and third, the issue has already arisen with another family member whose palliative care was a matter of serious debate within the family.

Has your father talked about a proviso in his will that cuts batshit crazy sibling out if they start any sort of legal action over his advanced directive?
posted by Talez at 5:09 PM on August 3, 2009 [1 favorite]

"Palliative-care doctors and nurses can be wonderful: I have seen them at their best, caring for my mother and for others close to death. But collectively they strongly oppose giving their patients the right to die – and their voice carries extra weight inside and outside the medical profession because they are the experts in death. They tend to claim that with the best care, anyone can live out their last days with enough comfort and dignity not to want a mercy killing. But following in the footsteps of Mother Theresa and Dame Cicely Saunders, this is a branch of medicine exceptionally heavily dominated by the deeply religious who believe only God disposes. Either they deceive themselves or else they deny the evidence of their own eyes and ears about many patients' experience. Their influence in this debate has been immense – and baleful".

- Polly Toynbee
posted by rongorongo at 5:37 PM on August 3, 2009 [5 favorites]

Degradpulsorying:

My computer does this all the time: As I'm typing, suddenly the type begins to land wherever the cursor is. Often, it's because my thumb brushed the track pad while I was typing.
posted by Mister Moofoo at 6:56 PM on August 3, 2009

It's a shame you can't just put it in your living will to have yourself quietly killed once your brain goes to mush.

Perhaps. In theory, I agree with this. In practice, however, I see many, many problems. When you write a law you can't just write them so as to as to apply only to the sensible, sensitive, and kind. The law will govern the action of the stupid, the venal, the cruel and the malicious as well. And so there is always a risk is opening up new powers, particularly new powers over the powerless, such as people suffering from dementia or in a coma.
posted by Diablevert at 6:57 PM on August 3, 2009 [2 favorites]

But for those people who are trapped and can no longer express themselves... I think most of them would maintain their previous opinion.

Not me. If I had my way, the EMTs would dig me up a week postmortem to give CPR another try. I'll cling to whatever straw I can grasp. Damn "dignity" to hell: there's no dignity or anything when you're room temperature.

I'm all for anyone who wants to go out how they choose, and I think suicide is everyone's right. But it's not for me.

Her last recognizably (to us) lucid moments, a few days before the end, were wracked with pain. I am haunted by the idea that as she lingered, unable to communicate, she still felt that pain from time to time until her death.

In my limited but all too personal experience, the ability to communicate goes before the ability to perceive. It's my special fear that I expect to in that very scary (and likely very painful) prison again in my final moments. But -- and this is just me -- going suddenly scares me more. I want to experience every last jot, and I want some time to compose myself, to know it's the end.

In fact that's the only thing that makes a planned death seem desirable -- to avoid the sudden cuto
posted by orthogonality at 7:46 PM on August 3, 2009 [2 favorites]

"Now, however, I live in hope - hope that before the disease in my brain finally wipes it clean, I can jump before I am pushed and drag my evil Nemesis to its doom, like Sherlock Holmes and Moriarty locked in combat as they go over the waterfall."

What an evocative way to describe his final wishes. Rage, rage against the dying of the light.
posted by Hardcore Poser at 7:58 PM on August 3, 2009

What an evocative way to describe his final wishes. Rage, rage against the dying of the light.

Better to light the flamethrower than curse the darkness.
posted by Nice Guy Mike at 9:06 PM on August 3, 2009 [6 favorites]

I worry that assisted suicide may start including people who are retarded or mentally ill, people who can't afford decent care, people whose organs are valuable.

I hate to break it to you, but the mentally ill generally manage suicide all on their own a lot of the time, sadly enough.

I would very much like someone to work out how to port a writer over into the world of their creation, so we can set Pterry up in a little townhouse in Genua, with Mrs Pleasant to do the cooking and a clacks tower to send reports back to us in this world.
posted by Jilder at 9:20 PM on August 3, 2009 [2 favorites]

Someone I know works as a CNA at a top-of-the-line, pricey, exclusive, the-list-goes-on Alzheimer's care facility. Rich people pay thousands per month, so that their elders can live in this so-called lap of luxury. There are residents there who have no families, but the sale of their assets/estate are keeping them there, per their living wills. It's the best that money can buy.

The food: occasionally, my CNA friend is without a packed lunch, and is hungry. Only then will she force herself to eat the mystery meat, and it ALWAYS gives her the runs. The food is along the lines of public school cafeteria food. The relatives either don't know or don't care. The relatives are barely around anyway. Those who do visit regularly, rarely stay for meals. I don't know, maybe they're not even allowed in the dining room. Dinnertime is when the mayhem that is sundowning happens, and most of the residents have dinner at the same time, in the same dining room.

The place is slightly understaffed. Some residents need 24/7 attention, but their families won't pay the extra costs for a personal CNA. Recently, a resident has gone permanently violent, and constantly, constantly punches, kicks, and slaps anyone in her reach. And messes up everything, throws things around - kind of like an unimaginably out-of-control child. Yes, they try their best to restrain her - but there's only so many CNAs for so many residents. Is she a liability? Of course, and everybody knows it. But, says administration, her family hasn't paid for the personal caregiver.

Bring a snack for your relative with Alzheimers? Maybe some item for them to keep in their room? Rooms aren't locked - I don't know why, probably security reasons. Alzheimer's turns adults into infants, and infants don't have boundaries. The food will be gone, the photos gone or ripped or scribbled over, anything shiny will be gone.

So if I ever get Alzheimer's, you can fucking bet that I don't want to end up in a place like that. It was hard for me when Terry Pratchett announced that he has Alzheimer's, it must be far worse for him. I dearly hope that Pratchett gets his garden and English sky (or library). But, Terry, for God's sake please find a way to keep publishing beyond the grave, because a world without you is just ... I'd rather not think about it.
posted by Xere at 11:06 PM on August 3, 2009 [5 favorites]

Well said Sir Terry (esp. "If wet, in the library").

What, librarians don't have enough to worry about with the homeless squatting, and perverts pulling the pork -- now they've got to worry about famous writers wandering in to top themselves in conducive surroundings?

Put your head in the gas oven like the rest of us, Pratchett!
posted by PeterMcDermott at 11:47 PM on August 3, 2009 [3 favorites]

Presumed he meant the oak-panelled one in his stately mansion, honest.
posted by Abiezer at 11:58 PM on August 3, 2009

pTerry can't die. He can't. There's no way to show that a solitary period is in SMALLCAPS.

I feel so deeply for pTerry. My grandmother has OldTimers but she was lucky enough not to realised what was happening. She went from claiming everyone has a bad memory when they get old to the confusion of the terminally stoned without really passing through the aware stage in the middle.

The selfish part of me deeply resents it when a May or November comes round and there's no new Discworld. The other 99% 50% bit of me will raise a glass of mostly apples high should his day in the garden come.

My wife spent some time talking to him online while he was in disguise in a gaming forum... one of the few people who go past all your expectations when you actually get to speak to them.
posted by twine42 at 1:30 AM on August 4, 2009 [1 favorite]

It was hard for me when Terry Pratchett announced that he has Alzheimer's, it must be far worse for him.

I saw an interview with him on Al-Jazeera where he commented that the thing he suffered most from at the moment (this being last year) was not the disease, but the diagnosis. Prior to the diagnosis, he'd simply been cheerfully assuming his fortgetfulness and occasional inability to reach the word he wanted or what have you were due to the fact that he was now in his sixties, and, well, of course he's forgetful, isn't everyone?
posted by rodgerd at 1:55 AM on August 4, 2009 [1 favorite]

I must say the brandy-in-the-garden option would probably be what I'd go for: but as suicide becomes more acceptable, I can see scope for a Terminal Club for death-ready members. I foresee two grades of membership - the 'angels' who offer themselves for medical experiments, match themselves with a group of transplant patients, or undertake hazardous rescue missions, and the 'demons' who indulge in stupid base jumping stunts, narcotic excesses and gladiatorial combat.

Actually I can imagine a Pratchett story somewhat along those lines.
posted by Phanx at 3:10 AM on August 4, 2009 [2 favorites]

pTerry not being here is a terrible thing to contemplate, I agree.

I know that all we have is a finite life. I know that there are only a certain amount of stories to be expected from just one person. I just hate the fact that there is an endgame in sight for Terry and that he has to even think about it and plan for a time that he is not himself, when he won't be able to trust himself or know what things are about, when his story has run its course and all that's left is everything else which has to be looked after by those who he loved and who loved him.

I'm just really sad that Alzheimer's exists, that's all. It really fucking sucks.

I hate the fragility of the human body, but I love the fact that we exist anyway. He should be able to go when he says its time, and no-one has the right to interfere. His life, his body. Mother Nature may very well have her plans, but if he wants to step in beforehand well tough shit. That's what you get for giving us free will.

I just hope he's got a bulging archive of stuff and at least four more books in the pipeline.
posted by h00py at 6:02 AM on August 4, 2009

Per a few comments above, if you get the diagnosis of ALS or Alzheimer's before your faculties go, then you have time to plan a suicide. You don't lose all your mental or physical functions overnight. Certainly you can misjudge, or be caught, there's lots of ways you can fail at this, which only makes the point stronger that we need some provision for ending our lives willingly in the law.
posted by emjaybee at 6:45 AM on August 4, 2009

Xere, I dunno, but I've been doing clinicals in a long-term care facility for the past couple months-- nothing fancy, Medicare-- and my experience is not as bad as you make it sound. I mean, the food is bland because it's low-fat and low-sodium hospital food, but it's not mystery meat. And stuff doesn't get stolen. And mealtimes aren't chaotic, and family members frequently stay for meals. Maybe your friend works in a lousy facility, in spite the fact it costs a lot.

Not that I'd want to live in even a nice long-term care facility. Pretty much every resident is on an antidepressant.
posted by molybdenumblue at 6:57 AM on August 4, 2009

I remember, when I was younger and looking for a profession, people would tell me that I should 'go into nursing, or, oh I know! Palliative care!' because I was so calm and patient. The average work 'lifetime' (as it were) was aproximately the same as the time to be educated in the particulars. A good slice of that was due to the suicide of the attendants.

I guess even chemical happiness isn't enough to ward off the doldroms of the dying.

Regardless! To your health Mr. P! Drink in the light, run as you can, rest when yer weary, and know that the Disc will be loved by our children's children, long after we who are here have departed.
posted by LD Feral at 7:50 AM on August 4, 2009

My mother is a nurse (who has seen many a dying patient) and while she doesn't suffer from any chronic disease (well, none that are fatal anyhow), she's made it ABSOLUTELY CLEAR that no one is to "pull the plug." Her feelings, and this is a direct quote: "I might like being a vegetable."

To each her own.

I'm with Sir Terry - I'd rather have a DIY death than a long drawn out slow march to an inevitably messy and embarrassing end.
posted by grapefruitmoon at 7:52 AM on August 4, 2009

It's just such a personal and emotional topic, and something that I'm not sure anyone can predict their own reaction to. I've looked into someone's eyes while they begged me to let them kill theirselves. They've made all the arguments listed here. And I've said, "No" and forced them into treatment. That's my job. And often, as mentioned above, they do change their minds. Sometimes they never do. And sometimes they eventually suceed in killing themselves either quickly as they intend or slowly, with drugs, multiple overdoses, or self-neglect.

When I was fifteen, my grandmother looked at me and told me she wished she had a gun so she could shoot herself. She was mentally ill and in the early stages of dementia. Several years later, however, after being in several different assisted living facilities, nursing homes, psychiatric hospitals, Alzheimer's wards, etc, she was diagnosed with lung cancer. The doctors recommended against radiation treatments due to her age and her overall health and mental state. But my grandmother wouldn't hear of it. She wanted everything medical science could give her to keep her alive. This woman who couldn't recognize her granddaughter or tell you the year and who had wanted to die many times before would have fought anyone for her right to keep existing.

And who would have told her that it wasn't really her choice? That she herself had chosen differently before and so she needed to die with dignity, without suffering the treatments she was then demanding? She may not have been herself at that point, but she was aware, almost until the end. She endured six months of extreme pain because of her choice and finally died under hospice care in my mother's home. I suspect a lot of Alzheimer's patients or patients with other forms of dementia would be like my grandmother, desperate to keep breathing by any means necessary when the time actually came. And who are we going to ask to end their lives?

I'm coming off as being against assisted suicide, and I'm actually not. I actually probably feel the same as the majority of Mefites. But my experience has taught me it's a hugely complicated issue that could almost never be as simple as we imagine.
posted by threeturtles at 8:57 AM on August 4, 2009 [2 favorites]

shmeggage: it takes the stated premise (terminally ill people should have the option to end their suffering) and extends it beyond what anyone has called for (people who are not terminally ill should have the option to end their suffering.) as much as I'd like to compare the two cases thanks to the extremity of their suffering, the difference is very real.

Why shouldn't someone who is in horrible pain, all day, every day, have the right to end their agonizing existence? It's their life (and death), not yours.

emjaybee: If I were diagnosed with Alzheimer's or ALS, I would stockpile pills immediately and without a moment's hesitation, and take my life at a point when I was ready and alone, so that my loved ones would not be culpable.

Others have pointed out that stockpiling pills may not help you because you might not have the wherewithal to remember them, or reach for them. Another one people forget: you may not have the muscle control to swallow them.

My take: every person should have the right to choose how they go out. The argument that some choose might go "before their time" is specious; "their time" should be when they've chosen it's no longer worth the struggle. Yes, family and friends will be inconsolable, but we're talking about people who are absolutely going to die anyway. It absolutely should be their choice to make and no one else's. At least this way, family and friends will know what is happening, and when, and can say their goodbyes while they're certain their loved one can comprehend them, hug them back, and tell them that they love them.

The religious can rail all they like about suicide being a mortal sin, but they absolutely should not have the legal right to prevent someone facing absolutely nothing more than increasingly torturous pain from ending that pain. And the argument that people might use "assisted suicide" to kill relatives should be irrelevant if the law is written properly. It has to be the legally documented choice of the terminally ill when and where and how and why, and nobody else's.
posted by tzikeh at 9:15 AM on August 4, 2009

Why shouldn't someone who is in horrible pain, all day, every day, have the right to end their agonizing existence? It's their life (and death), not yours.

I'm pretty sure that's what I'm getting at. If you're worrying about me drawing a distinction between the terminally ill and those merely in horrific pain, then let me clarify: since someone who is still of able body and mind who is in terrible pain can kill themselves if they want, there isn't a whole lot of need to make sure they have the legal right to. I'm merely trying to say that there is a difference because in the case of someone who is debilitatingly ill, there is the possibility that - thanks to their condition - they can be prevented from killing themselves, which I see as unjust. I hope this clears things up.
posted by shmegegge at 3:17 PM on August 4, 2009

One reason I'm abivilant about saying those in chronic pain ought to be able to freely (legally) end their lives is that I fear it will remove the motive for improved treatment. It's a whole lot cheaper to come up with ways to help people die than it is to solve the issues of chronic pain. And, our society can continue to avoid dealing with the ways in which the war on drugs impacts those with chronic pain. On the other hand, I've heard of horrific (and very very rare) diseases that cause central nervous system pain. The message is coming from the brain itself, and because of that there is little that asuages the pain.
The whole issue is far more messy than assuming that those who have qualmes do so for religious reasons.
posted by Librarygeek at 10:43 AM on August 5, 2009

One reason I'm abivilant about saying those in chronic pain ought to be able to freely (legally) end their lives is that I fear it will remove the motive for improved treatment.

Surely that would only be the case if the vast majority of those with chronic pain were also determined to end their lives. As that is demonstrably not the case, I can't see the merit of the argument. In fact, the vast majority of those with chronic pain do, in fact, have the capacity to end their lives and don't, in fact, choose to exercise it. Therefore the demand for "improved treatment" will stay all but unchanged.
posted by yoink at 11:14 AM on August 5, 2009