Terry Pratchett initiates assisted suicide process

Beloved science fiction and fantasy writer Terry Pratchett has terminal early-onset Alzheimer's. He's determined to have the option of choosing the time and place of his death, rather than enduring the potentially horrific drawn-out death that Alzheimer's sometimes brings. But Britain bans assisted suicide, and Pratchett is campaigning to have the law changed. As part of this, he has visited Switzerland's Dignitas clinic, an assisted suicide facility, with a BBC camera crew, as part of a documentary will include Britain's first televised suicide. Pratchett took home Dignitas's assisted suicide consent forms.
He said: "The only thing stopping me [signing them] is that I have made this film and I have a bloody book to finish."

But he stressed that he was as yet still undecided whether he would eventually take his own life.

He said he changed his mind "every two minutes" but added that if he did choose to die would prefer to do so in England and in the sunshine.

Sir Terry, creator of the Discworld novels, was 60 when he was diagnosed with terminal condition and has since campaigned passionately for a change in the law to allow assisted suicide in Britain.

Sir Terry Pratchett begins process that could lead to assisted suicide (Thanks, Fipi Lele!)

(Image: Terry Pratchett, Powell's, a Creative Commons Attribution (2.0) image from firepile's photostream)


    1. My grandfather went through the same thing. Body stayed strong, but the mind slowly went. In the end, I don’t know if he didn’t recognize me, or did and couldn’t express it. He “died” so slowly, that, at the end, it wasn’t as much of a shock to us, but to see what people go through.

      That being said, I’ve been putting off reading Sir Terry’s newest books for fear that they may be the last Pratchett books I get to read…

  1. Terry — I, and many others, love you, without ever having met you. Best wishes to you always.

  2. I want to see the bright side of this in that perhaps it’ll help people in Britain and maybe even the US see that dying can be a choice too. Really though, I just hate the thought of no more Terry Pratchett and for that there is no consolation.

  3. It will be incredibly sad to see such a talented man pass away, but I applaud him for trying to do it in a way that brings attention to the issue. He could have just as easily gone overseas, had it done, and avoided controversy. Instead, he’s embracing it, which is admirable.

  4. I don’t think there ever is a good way to die. But we should be able to choose, if that’s what we want.

    1. You do have the option to choose. There are no laws against that. The issue is having someone else help you. If Pratchett wants to kill himself there are tons of ways to do it. But what he wants is to go to someone else and basically say ‘If I wake up one day and I don’t remember who I am, I want you go dose my morning oatmeal with a crap load of sleeping pills, tuck me into bed and walk away.’ and that’s what the State has an issue with, because it puts someone else in the position of being asked to commit murder. If it was legalized then it could open up all kinds of situations that the State wants to avoid

  5. It would be wonderful if we were close to a cure, but I haven’t seen evidence of that. I read Thomas DeBaggio’s two books on the subject, and learned that he passed away a few months ago. One of the worst diseases, and one that took away any shred of belief in god I might have once had. Maybe someday gene therapy will put an end to this disease, until then, I hope we have the option to end things if we wish, rather than letting this disease take its horrible course.

    1. Damn you, you beat me!

      More power to him. Unfortunately, like the topic of gay marriage, the religo-nuts are too sensitive to let this happen any time soon. It offends them that people could possibly want to choose to end the glorious work of their dear non-existant creator.

      They probably missed the memo about the Melbourne girl Angelique Flowers who pleaded for our ex-PM to legalise euthanasia, so she could die in dignity. She had severe Crohn’s disease which resulted in an eventual bowel blockage. Her last hours were spent with her brother who “held a bowl under his sister’s chin as she vomited faecal matter”. She had managed to obtain Nembutal (a drug used in assited suicide) but chose not to take it (presumably to avoid legal problems for her family)

      In case you miss the point religo-nuts: Your god is a fucking asshole if that is part of his/her grand plan.


      Angelique’s Youtube plea to the ex-PM:

      Religion dictating what is morally sound… that’s fresh.

  6. We have are losings a great man, Britain’s choice is whether or it will be quick and dignified or slow and painful. I would rather not loss such a great man but that is not a choice we have. Thank you for all you have done and will do for us Sir.

  7. A while back, I came upon a documentary on PBS about a man who had chosen assisted suicide through Dignitas. They interviewed him, his wife, his kids, the people at Dignitas, and followed him through the whole process. It was sad, but fascinating.

    I just looked it up. It’s called “Right to Die,” and evidently it was shown on British TV, including the scene of the actual suicide. http://www.telegraph.co.uk/news/uknews/3700580/Assisted-suicide-documentary-Oscar-winning-director-defends-Dignitas-clinic-film.html

    As I said, it’s sad to watch. But I recommend it.

    One scene that really stuck with me was the interview with the guy who does a lot of the actual assisting. He told this story: one guy he was assisting wanted to listen to the Beatles while he died, but he hadn’t brought a CD. So the assistant sang to him as he passed away — “Long and Winding Road.”

  8. It baffles me that choosing to end your own life or helping someone else under circumstances like these would be illegal. I do not begin to understand the thinking.

    1. Well, outside of religion it isn’t easy to see why someone would say it’s wrong. But imagine a health care system where assisted suicide is one of the legal options, and insurance companies choose what options you can afford. That should give you some idea of why people might be wary of the concept.

    2. It’s the slippery slope argument.

      While it seems clear cut that someone like Mr. Pratchett wants to die on his own free will, accepting this *could* put serious pressure on people who would rather live, but get negative feedback from their kin/social services/etc. It’s not that long that coutries – mine in particular, but others, too – were only to eager to euthanize such people.

      As long as people look at a group of severely handicapped people – mentally of physically – and think of them as living a life not worth living ( and yes, even when they think so in sympathy), this danger is quite real, in my option.

      Killing yourself, by the way, is usually not forbidden at all.

      1. Killing yourself, by the way, is usually not forbidden at all.

        It’s hard to stop, but if you care about what you leave behind for your loved ones, there can be serious penalties.

      2. The problem with the Slippery Slope Argument, is that it is itself a slippery slope.

        If we are to stop people from choosing their own manner of death because that right might be misused, then what is to say that we shouldn’t stop people from doing anything else which might have hidden problems?

        To pick just one obvious example: alcohol causes untold numbers of deaths, illness, and various other problems to society. Clearly, some people can handle it, but it’s a slippery slope. Using the logic of the Slippery Slope argument, then, alcohol should be banned. … wait, we know how that one ends.

        1. Who’s worried about people misusing it? The worry is that companies who set de facto policy will misuse it.

    3. My understanding of the arguments against assisted suicide is that the standards for making a serious medical decision often conflict with the reasons someone would choose assisted suicide. For instance, you shouldn’t be making the decision because of extreme pain, as there’s usually medication for that, or you shouldn’t be choosing assisted suicide because of severe depression, because there’s therapy and medication that can alleviate that as well.

      From what I recall, the advocated standards include psychiatric evaluation, evaluation from a pain specialist, and evaluation of medical history.

      What Terry Pratchett is doing here is the ideal situation from that viewpoint – he has the diagnosis, he knows what’s coming, but he’s not yet (to my knowledge) experiencing the worst of the symptoms. He can make this decision in a clear, considered way. It’s anticipatory, not reactionary.

      Note: I’m not saying I agree with this treatment of assisted suicide, just that this is how I understand it to work.

      1. There is not always adequate treatment for pain, especially disorders that are progressive. Don’t make that assumption. My body is slowly calcifying — my muscles are turning into useless junk tissue that is capable of nothing but sending extreme pain up my nervous system. This gets worse daily, and even heavy opiates can not treat it. Eventually I will be completely paralyzed and blind and in incredibly large and untreatable amounts of pain. Because my disorder probably will not significantly affect my organs, or at least will affect them last, odds are that this condition will not directly kill me any time soon. I certainly hope that assisted suicide becomes an option in my jurisdiction, and I have been filing paperwork stating my wishes with my doctors for years now to lay the foundation. I would rather not have to do it myself with a shotgun for a wide array of reasons.

        But I might if I am given no other option. I believe I have that right. I love my life and still get joy out of it, but I know the time will come that I will make the rational decision to say goodbye. Please let it be in a way that doesn’t traumatize those I leave behind needlessly.

      2. Pain is an excellent reason for assisted suicide. Yes there are medications for pain but would you want to live in the following situation;
        wake up due to the pain
        take medications to dull the pain
        wait in pain till the medication takes effect
        pass out due to the medications

        Pain medications are not a cure and can be as debilitating as the pain.

  9. To paraphrase Granny Weatherwax, HE ATE’NT DEAD. Your headline scared the bejeebus out of me. Carry on, Sir Terry. May you keep Alzheimer’s at bay and be with us for a long time to come. We love you!

  10. I remember watching this talk given by him, exactly on this very same issue. It’s an amazing speech. And my mind changed completely on this issue, primarily because I’d never thought it through.

    Why shouldn’t you, indeed, finish it off while holding a wineglass, sitting in a garden with the sun hitting your face, if you so choose?

  11. So very heart-wrenching. My thoughts go out to Sir Terry, his family, and all the other folks who have to make similarly painful choices.

    Along with a great many other interesting topics, the book ‘The Devil’s Picnic’ has a very good chapter on how Dignitas works.

  12. Suicide is actually against the law in most US States..obviously only if they fail at it..

    There is NO unicorn chaser for this post :( I hope he holds on for as long as possible. To have a brain like that and lose it slowly..his decision and indecision are certainly understandable.

    1. Actually, it’s also illegal if they succeed. The punishment, however, is that your will is not honored, seeing as how you couldn’t possibly have been of sound mind when it was written. The standard copy for a will starts with: I, soandso, being of sound mind and body, do hereby…

      It’s a weird catch-22 sort of thing. The clause is in there to protect people from being manipulated, but at the same time, creates a situation in which they are indirectly manipulated.

  13. Having met Terry when he came through Philadelphia some years ago for a read/talk I feel he is doing what is right for him. Can you imagine such a man of words to be trapped inside a mind that will fail him? Very sad – but it is his choice.

  14. For those who are opposed to assisted suicide, this brings up a familiar question: “Should one separate the art from the artist?”. Putting aside the morality question for a second, it makes me wonder if his next book will contain subtexts from this extremely personal decision authors personal life?

    To provide some linkage, here is Cory’s post on Roald Dahl from last week: “Roald Dahl: kind of a jerk”. http://www.boingboing.net/2011/06/07/roald-dahl-kind-of-a.html

    And, checking.. Gadzooks! Here is the wikipedia on this next novel. http://en.wikipedia.org/wiki/Snuff_%28Pratchett_novel%29
    Snuff? Pratchett also emphasized that the word snuff has “at least two meanings”. Well, now seen in context …

  15. Tragic and very sad. Watching my mother go through Alzheimer’s gives me fresh understanding as to why he wouldn’t want to suffer with it until the bitter end. It’s heartwrenching.

    I really, truly hope that this story not only encourages people to look at the issue of assisted suicide, but also at how desperately more research needs to be done to find a cure for Alzheimer’s disease. Because it’s mostly an elderly disease I think that people see it as a throwaway issue without truly seeing how it ravages a person & prematurely takes away their ability to live a full life with dignity & clarity of mind.

  16. Firstly, Terry Pratchett is one of those people I have an amazing amount of time for. Both a great author and as far as I have seen a great man. Discworld are the books I turn to when I’m lonely or miserable or just plain board. Nothing I say after this should be seen as anything against Terry Pratchett.

    Now the but.

    Actually it is not really a but, just a thought . I’m not entirely made up on my position on assisted suicide, but I can see a compelling case that a person who is sound of mind should be able to make a a rational decision to end their life.

    The trouble is in Terry Pratchett’s case he is suffering from a degenerative condition. By the point he would want to actually end his life he will by definition not be in a sound state of mind to make that decision.

    And here it gets really messy, does he leave instructions now to end his life when he gets to a certain stage. Does he still get a say then, and how does that work if his mental state is to confused to fix on an answer. Presumably now he feels that that level of confusion is the point it should end, but how do we know he still feels that way then? Does it matter?

    Assisted suicide for Altzheimer’s patients is probably the area I would be least comfortable with becoming legal because I can’t really see how the (victim?) could be really consenting at the moment that the act takes place.

    1. What you say about consent is true, but there are actually already lots of situations where some third party has to make life-ending decisions for a mentally incapacitated person. I think the issue is less about consent and more about agency. Someone with advanced Altzheimer’s may be incapable of actually initiating suicide, assisted or not. At which point, you’re out of the realm of assisted suicide and into that of euthanasia.

    2. What if the individual chooses to terminate their life long before they reach a state of being incapable of consenting or not? Say, for example, Sir Terry ops to have his death occur on December 21st of this year. It’s very likely that he would still be in relatively good mental health at the time…

      I’ve talked about this same thing with several of my friends and family. One of the few things that truly terrifies me is losing my mind. Not in the going insane sort of way, but in the dementia and loss of mental function way. I’ve often said that if I get Altzheimer’s and can’t think straight or remember things, they’re fully authorized to put a bullet in my head (provided I haven’t done it myself by then).

      And lest anyone be overly concerned (I know BoingBoingers are generally thoughtful and caring people), no, I’m not suicidal. Quite happy, actually. I just don’t like the thought of being in a state of ‘lights on, but nobody home’.

      Still, I’ve read many of his books and have always taken a great deal of joy from them. I wish him and his family the best.

      1. If you want to do it in Switzerland, you should make at least the abstract decision while you are capable of making it. Make it clear that you want to die if you’re no longer of clear mind and able to enjoy life.

        And you ultimately _should_ be able to do the actual act yourself (preparations can be handled by others). This in order to keep other people from getting a prison sentence for killing you (even though such sentence may be fairly short if your intent to die was known prior and it will be judged as an act of compassion by the one(s) which are doing it for you).

        This is just the balance between protection against getting murdered by family and insurances and others that may have an interest in your demise, and the actual right to die we Swiss chose to have. It was repeatedly confirmed in directly democratic votes – so this is acceptable and desirable morals to at least some millions of people.

  17. We don’t choose to be born, we are only allowed to choose when to die (if lucky enough). My take is that we all give too much importance to life – I mean to life itself, as a “value”. Our foot crushes ants every day, death is not so special or sacred after all. Death is not the opposite of life, it’s just a changing of shape. Nothing really dies, and nothing is really born.
    If Sir Terry whishes to go in a certain way, he should be granted absolute freedom to do so. Life is not a “gift”. It’s just something that happens, and we have no control over it. I assume Sir Pratchett has lived a fulfilling life, and has never given up on his curiosity and wonder. This is life truly perceived as a blessing, and it has nothing to do with how it “ends”, from a human point of view.
    Whenever someone commits suicide, be it a long-thought strategy against a stressful future or a simple emotional reaction to something heart-breaking, I think he deserves the right to end this particular shape he’s in, and move on to another.
    And what about the pain he leaves behind? That can be useful too. Pain is a part of human experience, and it makes you grow up. Either way, suicide is something painful and meaningful – I should say truthful, as truth is always made of pain and meaning.
    If you ever decide to go on your own will, Sir Terry, you have my blessings. I loved your writings, and as long as I live your influence will be enormous.

  18. Alzheimer’s is very difficult to diagnose accurately. In a recent study, only half of men diagnosed with Alzheimer’s were found to actually have Alzheimer’s on post-mortem examination. The problem with committing suicide when you get this diagnosis is that you’re giving up on a glass half full.

    1. I take your point that deciding to kill yourself after being diagnosed, but surely the other half of the people tested had some other, similar condition? It may not have been Alzheimer’s but was probably nearly as bad, as bad, or worse. And crucially, bad enough for most people to want to end it.

      I can certainly imagine, though, people who get worse and worse after being mis-diagnosed initially in a psychosomatic way – and so misdiagnosing a mental condition as serious as Alzheimer’s is probably rather dangerous to the well-being of the patient. But, that’s a different discussion.

  19. The headline is kinda misleading – there’s a world of difference between “initiating suicide process” and “begins process that could lead to…”

  20. Such a very sad story. Terry Pratchett is one of my favorite authors. Many of our family “in” jokes are based on Pratchett routines.

    To learn more about the process of death with dignity, everyone should try to see the film “How to Die in Oregon” by Peter Richardson. It won the documentary prize at Sundance (deservedly).


  21. This one really strikes home for me. My father had severe dementia for years before he passed away in a nursing home (it became impossible for us to care for him at home). He completely lost everything that meant anything to him. I can definitely understand the arguments for the option of assisted suicide and the slippery slope concerns.

    I wish the best for Terry and his family in whatever decision he makes. He has brought so much joy to others.


  22. Well if that didn’t just cause me to catch my breath and burst into tears. I will be at a loss when he leaves – he changed my whole world.

  23. My Uncle has early onset Dementia. His is Frontal Temporal and so this may not carry over as much to Alzheimer’s progressions but he is completely content, the people that it’s hardest on are his surrounding loved ones; and this has been the general consensus when I talk to other people dealing with this disease in their lives. People should have the right to die when and how they wish too, but I also think our society could do much more to accommodate people with neurodegenerative diseases if they could be arsed to do so. Instead we keep trying to fund miracle cures (which is a good thing but, having worked with some of the researchers and gone to conferences I can say its a long ways off) and otherwise try to keep them out of sight and out of mind.

  24. Do not go gently into that good night, but rage, rage against the dying of the light

    I hope he need not come to this choice, but to choose it over the slow decay of your mind while you are trapped, helpless within is something I can understand.

    In the end we all die, let him meet Death with all the dignity he cares to muster.

  25. Don’t worry, I wasn’t making that assumption. That’s why I qualified it and why I pointed out pain specialists as being important to the process. You need someone involved in the process who knows the disease or condition and its effects on the body.

    I didn’t mean to suggest that all people who are in pain just need some meds to feel better. Pain can be manageable given the right conditions, and I would hate to see someone commit suicide to avoid pain that could have been alleviated.

    1. Absolutely, I agree — definitely this underscores why LEGAL self-euthanasia options are required, because it allows doctors to become involved in the process. Right now, it’s very difficult for doctors to appropriately council someone in this territory. If their patient is at a risk of self-harm, then they are obligated to have them committed… And really, there’s nothing scarier than being so sick you want to die, and then being put in a psychiatric prison to stop you from finding that relief. So you can’t speak with complete honesty to your doctors, which increases the potential that a cure or at least a treatment for your pain and other side-effects could be missed.

  26. Terry-all the best to you. Your decision is yours to make. Having watched numerous family members suffer with Alzheimer’s,cancers,M.S.,etc. I am a firm proponent of right to die legislation. That said; my family will miss you & your writing immensely. You have been a much loved & looked forward to author in our lives. Myself, my son,daughter & nephew have all read your books for many years. Thank you for creating Discworld.

  27. Terry has an option to help slow if not stop his dementia and apparently he’s not choosing to use it. The infrared helmet that he talked about in his 2-part series on dementia has been shown to be effective in slowing and in some cases reversing the effects of demntia. At the Quietmind Foundation we are conducting the first human clinical trials on this technology and are seeing encouraging responses in folks we’re treating in our clinic. I don’t know if his has or why Terry has not persisted with this treatment but the evidence is there that it works. For detail son the clinical trial go to http://www.quietmindfdn.org/clinicaltrial.

    There are other options.
    Marvin H. Berman PhD
    Executive Director, Quietmind Foundation

  28. Such sad news – a cruel disease and Terry you are such an amazing and interesting writer. Very sorry to hear this

  29. I don’t think this is an area where health insurance companies will rip you off. There are no real tiers of care involved here, only “acceptable” and “unacceptable”. In addition, I doubt people would be denied coverage for assisted suicide, since it is bound to be significantly cheaper than treating the patient.

    The biggest concern I have about health insurance and assisted suicide would be that companies would provide incentives to family members to “off” their loved ones. For example, they begin to cover less of the expenses for conditions where assisted suicide would be a likely option (terminal Alzheimer’s, for instance). I think this would be the likely scenario.

  30. I watched my father wither and pass away with Alzheimer’s, fearful, paranoid, reliving horrendous experiences from WWII. I have often thought of how and WHEN he would have preferred to die, rather than from pneumonia in a nursing home in the disease’s (diagnosed) fifth year. Certainly given his choice, I think he would never have chosen to live beyond leaving his beloved home for the last time, but he was already far gone by then, late in the fourth year.

    Terry Pratchett has given us so much life and laughter and happy wisdom — i.e.: “He’s had a near-death experience!” “We all have. It’s called living.” And “…So this was the secret at the heart of it all: to look death right in the face and charge…It made everything so utterly simple.”

    I hope that Mr. Pratchett is able to live life as long as he loves the beast, and is able to recognize that moment when the cognizant balance is lost. I would thank him for all the laughter and childlike delight he has brought to us all, and for his fight to bring dignity to the final choice we can make. I hope that the desert is kind, and that fantastic adventures lie on the other side. And share what I think of whenever I even consider being afraid of death: Timothy Leary’s last words — “Yes. Yes. Why not?”

  31. Although I do agree with the general trend in the comments about TP being a great man, and everybody entitled to his/her own death in its own time, I must warn for dramatization here.

    Sure, there are better and worse ways of dying. But a lot of this, especially in the case of Alzheimer or dementia is in the perception of the onlooker.

    I have seen my father go in this way too, and also the reliving of WOII experiences (or in his case, post-WOII experiences, because the victors were not always very nice either) strikes a note with me. But all in all I think that we suffered more than he himself did.


  32. The things that seems clear to me is that it is a choice that belongs with individuals, not with the State.

  33. I have all of Pratchett’s books but the last one, and consider him a great benefactor of humankind through the gift of his inventive imagination and depth of perception. Everyone who has read his books will be devastated at this loss. I hope he decides to stick it out so we can show him our appreciation till the end – I can’t think he will ever want for loving care.
    Terry, I know it’s scary, but we are all here for you.

  34. Alzheimer’s affects people in different ways – it’s not a one-size-fits-all disease.Terry may have at perhaps a decade still in front of him before his mind is sufficiently impaired that his story-telling spirit will finally be stilled.Far too early to write him off. I expect at least 3 more books from him – other people do the typing.

    As a person responsible for a friend with Alzheimer’s, I have noticed that first-hand close contact with a sufferer very speedily updates mindsets. The sufferer certainly welcomes the prospect of early death (my friend jokes about it every day and has the funeral planned in detail) but still lives for the moment.
    We are lucky in this decade to have drugs that slow down the process – that is why so more research is needed. People need to change their attitudes accordingly. When a person loses his/her short term memory or motor capacity, their character and feelings remain intact for far longer than you might think before the final breakdown.

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