Terry Pratchett on assisted suicide [Matthew's Journal]

I watched this just now on iplayer (it's available until Monday evening). He talks to a couple of people who have decided that they wish to be helped to kill themselves (and someone who has decided to die in a hospice); he (and his assistant) travel to Switzerland to meet one man the evening before he kills himself, and they attend the assisted suicide of the other. As you might expect, it's a powerful hour of film, and rather distressing at times. Sir Terry's assistant is visibly upset quite a bit.

To be fair to the program, it's not trying to be a balance documentary on assisted suicide; Sir Terry is clear that he thinks it should be legal in the UK, and most of the people he speaks to agree with him. The hospice worker is clearly less convinced, but we don't see much of her conversation. Nonetheless, I think even without having a full debate on assisted suicide, there were some important ethical issues which were mentioned in passing that warranted further exploration. Twenty-one percent[0] of people killing themselves at Dignitas (the clinic in Switzerland) were not terminally, but wanted to die because they were unhappy with their lives. It's not abundantly clear to me that someone who is physically healthy but suicidal needs a lethal dose of barbiturates, rather than their mental and spiritual health problems being addressed.

Another theme was the desire to end one's life before one became dependent on others, or "lost one's dignity" - several people talked about dignity. This line of thought obviously riled the hospice nurse, who clearly was of the view that her institution enabled those with terminal illnesses to die with dignity. I worry that there's some unexamined ableism here; the idea that if one is dependent on someone else for one's physical needs, one's life isn't worth living seems disturbing. What would Sir Terry say to someone whose disability means they struggle to communicate? I would have liked to see some consideration of whether people could be helped more to live, rather than being helped to die.

The aspect of this program that seems to have caused most controversy in the press was the decision to show the suicide of Peter Smedley. It struck me as relevant to the documentary, and sensitively filmed.

[0] this is the figure I remember being quoted in the film; ICBW

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I don't know if I want to watch this at all, but my views are as follows.

1) It's only very recently that we, as a society, have become removed from death on a regular basis. Our grandparents, even parents if they are older, will have experienced the death of siblings, parents, friends during their youth or childhood from disease, war, accidents etc. People died at home, often with the family gathered round them. It's really a very recent thing for people to die in hospital. So showing someone dying on television shouldn't be shocking just because we've forgotten that it used to a household event.

2) The hospice movement and organisations like the McMillan nurses provide all kinds of support for terminally ill patients to spend their end of life in as dignified a way as possible. My uncle died of cancer at home with his family and grandchildren around him. It may ultimately have been very tiring and possibly painful, but he got to say his goodbyes as he wanted to. I don't see that as not being dignified for him. Clearly that is a different matter from dying in excruciating pain on dirty sheets or even being knifed in the streets - which I'm pretty sure is less than a dignified death.

3) Being depressed and wanting to die is a whole other issue.

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"it used to be a household event."

That's a really good point. Quite disturbing - it happens to everyone but we've become so removed from it.

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"I worry that there's some unexamined ableism here; the idea that if one is dependent on someone else for one's physical needs, one's life isn't worth living seems disturbing."

Very very disturbing.

I would like to choose my own death, but absolutely not at the risk of giving such a final solution to a culture who largely see disability as a burden. You might find this article interesting: http://www.independent.co.uk/opinion/commentators/dominic-lawson/dominic-lawson-why-the-disabled-fear-assisted-suicide-2297116.html

The thing that struck me about that article was that it only focused on the physical. No comment about someone knowing their brain is failing.

That headline contains one of my pet gripes: "The Disabled". I always want to say: "Please clarify. Do you mean: All people with disabilities, most people with disabilities, or some people with disabilities?"

I haven't seen the programme (I know I would find it too distressing and triggering), but I've been getting a similar gist, and thank you for saying what you have.

I worry that there's some unexamined ableism here; the idea that if one is dependent on someone else for one's physical needs, one's life isn't worth living seems disturbing. What would Sir Terry say to someone whose disability means they struggle to communicate? I would have liked to see some consideration of whether people could be helped more to live, rather than being helped to die.

Very definitely some ableism, I would say.

When I was 20, my then best friend (some people on your FL knew her too) told me, very kindly and seriously, that I needed to make the doctors cure my ME pronto, because I was "better off dead" than with my level of health at the time. I'm actually more ill now than I was then. I (inevitably) bottled it and repressed it at the time, and only realised a couple of years ago how hurt and betrayed I felt, and still feel from that. It's a searing memory, and a horrible wake-up call to what can result from the obsession with independence.

I'm not independent. I probably never will be. I couldn't live alone, and at the moment I need help to leave the house. This is sometimes depressing, but my life is most definitely worth living all the same. I love it passionately.

I wish more people read this blog (http://thedealwithdisability.blogspot.com/), by an awesome woman in the States, whose disabilities are a lot more serious than mine. She posts accounts of the ludicrous way people behave around her with both sarkiness and an impressive level of tolerance. I wish she posted more often! But, yes. Voices like hers aren't encountered enough.

Something else that makes me very uncomfortable with discussions of assisted suicide is that while as a society we're entertaining the ableist view of disabled (and elderly) people as a "burden" (a view which is noticeably increasing in the UK at the moment - as are violent attacks on disabled people) there's a real risk of people being put under pressure, open or subtle, to commit suicide for the good of their families and carers. I'm worried that we'd only have the illusion of consent, not the real thing. :-/

I'm really not against the idea of assisted suicide in principle, but in practise at the moment? Yeah. I'm uneasy.

for the good of their families and carers

And even, possibly, "the taxpayer". :-S

http://www.independent.co.uk/news/obituaries/roma-gill-729384.html

This woman was my mum's classmate and bridesmaid. Although she may have only been 65 when she died, I don't think she would have entertained the thought that her life wasn't worth living.

She sounds wonderful. And wow, yes, what a life.

Also, I love your icon.

Of all the people my mum knew at school, the one I most regret never meeting was Roma.

And yes, I love it too.

My view is influenced both by someone close to me having to refuse food and water in hospital in order to die, because the pain of terminal cancer was too severe, and by the fear of having to face something equivalent myself. Truly and honestly, I don't think I would want my worst enemy to go through that. It is something I don't think I will never forget, even as CFS/ME turns my episodic memory into mist.

I guess we all hope that when our time comes, death will be quick and painless, but few people get to die like my mother's grandmother. She is reported to have said that she was very tired and needed to go to bed early, then she walked up stairs and died suddenly of a heart attack.

I admit that I can't see a way to ensure that nobody ever could possibly be influenced to commit suicide because, for example, their relatives couldn't cope any more, or even wanted to inherit their money. Neither would I trust any government forever not to try to influence people as well. The human race doesn't have to means to do anything flawlessly. Some occasional evil could not be avoided if people were allowed access to a medicalised and painless means of suicide. There are safeguards in the system in Switzerland, and they try to eliminate that possibility. They may have succeeded so far, I don't now, but over a long enough time, there are inevitably going to be people who are being influenced, but nobody manages to spot this.

IF there is ever to be assisted suicide in the UK, we have to accept that the screening system is not infallible, while insisting that it is made as good as humanly possible. If the non-zero possibility of error cannot be accepted, then this is something that will not happen in the UK. However, medical treatments, intended to do reduce suffering, can cause harm in cases where human error contributes to what goes wrong. We do not believe medical error is in any sense acceptable, but I believe that the consensus is that medicine is worth the risk.

I am aware that some people have to endure things I can't face even trying to imagine in the final stages of their diseases, and I feel strongly that this is evil as well, and that it is inhumane to force people to go on to the bitter end if they are suffering severely. I would like to reduce this, even at the expense of an irreducible level of risk of very ill people being influenced to commit suicide when, on balance, they might not have made that choice.

Personally, I would also feel less afraid if I knew that there was a painless way out if I had a disease I couldn't deal with. The disease might not get that painful or otherwise impossible to cope with, but knowing that if it did there would be a way to escape would, I think, make it more endurable. As things are, you'd need to be still physically and mentally able to organise and carry out travel to Switzerland, and rich enough to do so. People lacking those resources don't get the choice of a less painful way out.

Edited Date: 2011-06-14 10:30 pm (UTC)

When I was 20, my then best friend (some people on your FL knew her too) told me, very kindly and seriously, that I needed to make the doctors cure my ME pronto, because I was "better off dead" than with my level of health at the time.

Wow.

I've had people tell me that I shouldn't have children because it's "better if people like me weren't born at all", but they weren't my best friend.

And it's people like this that make me fear for society ever being able to evolve to a point where euthanasia could be a choice.

And now I sound like a daily fail reader.

It's not abundantly clear to me that someone who is physically healthy but suicidal needs a lethal dose of barbiturates, rather than their mental and spiritual health problems being addressed.

I think that inherent in your statement is the right of people to decide for other people how much they can bear their unhappiness. Nobody can decide for someone else their potential for happiness. Really.

I'm wary of a large tin object marked "worms" here, and of accidentally saying something flamboyantly offensive.

Some people who want to kill themselves are mentally ill. I think we fail in our duty of care to them if we allow them to kill themselves while mentally ill. Indeed, if their mental illness can be cured, then the desire to die will go away.

Would you agree with the above paragraph? If so, I'm not sure how we disentangle that from the problem you raise with my statement.

I think you need to disengage the wish of somebody to kill themselves from the state of mental illness. I think this was the argument at the core of Pratchett's thesis.

It's easier to understand it if someone has a physically measurable disabling and incurable disease; there's a visible reason for their unhappiness that other people i.e. the person not the person who wishes to end their life can engage with and say "OK, we'll let you kill yourself," i.e. it's easier for the outsider to realise that this may be a rational decision.

There seems not to be a right answer. For a start, while there are some people who pretty much everyone could agree were mentally ill, mental illness shades into mental health, and there is no way to decide anywhere near the margins. Obviously (to me) it makes sense not to allow people who are mentally ill to make a decision for assisted suicide. The question is what should be done for people who are not, on the face of it, mentally ill?

Mental illness of some sorts can be invisible. Yet, if you put in place a criterion of having to prove sanity before making the decision - well - tests have shown that to be a difficult proposition.

Is all mental illness curable? I would guess not, minimally because mental illness can be caused by physical illness or even brain injury, and that may not necessarily be curable. What then? Is there ever a point at which you could justifiably end the suffering of someone in that sort of situation, no matter how sure they were, within their own limitations, that they wanted assisted suicide. I haven't got a suggestion for the right answer.

Obviously (to me) it makes sense not to allow people who are mentally ill to make a decision for assisted suicide

I would disagree with you here - as juggzy says, "disengage the wish of somebody to kill themselves from the state of mental illness".. For instance, someone with occasional episodes (could be anything from anxiety to schizophrenia) who might have huge physical problems as well, whose therapist could demonstrate that they had the same unstinting wish throughout their remissions as well as their bad episodes...

It just reminds me of how sometimes people who seek gender reassignment are sometimes still asked to provide a psychiatrist's "certificate of sanity" before things can progress. This outmoded approach horribly stuffs those with more than one thing wrong with them :-(

Is all mental illness curable? Sadly not, but I think the more useful distinction is informed rational consent wrt the outlook of their condition, which will be hard to satisfy in many such desperate cases.

The understanding of some physical illnesses is good, but over the whole field of physical illness understanding is patchy, and clearly there is still a lot to learn. It seems to me that mental illness is at a much earlier stage of understanding, and that seems to me to be part of the problem.

I would argue that if someone wants to kill him or herself because the voices in the head command it, then that is probalby not a good enough justification for an organisation tasked with assisting suicide for some people to make the decision to do so in that case. At least, not unless the voices cannot be silenced by any medication, are not a temporary affliction, and are, in effect, an incurable illness that causes much suffering.

Obviously (to me) it makes sense not to allow people who are mentally ill to make a decision for assisted suicide. The question is what should be done for people who are not, on the face of it, mentally ill?

Mental illness of some sorts can be invisible. Yet, if you put in place a criterion of having to prove sanity before making the decision - well - tests have shown that to be a difficult proposition.

Er, can I just ask, are you equating mental illness with insanity and irrationality here?

No, though there is an overlap. If all the details about mental illnesses had been discovered, which I don't believe to be even nearly the case, it just might be possible to determine accurately what types of mental illness would or would not be likely to impair someone's ability to make a rational decision.

At the present level of knowledge, it is probably possible to make estimates in many cases as to whether someone is completely off with the fairies and has little perception of what most people perceive as reality, or whether the person is able to properly consider a serious decision. If the prospect of imminent and painful death causes you to be depressed, I would not expect that that would, of itself, prevent someone from making a rational and informed decision. As rational as life ever gets, anyway.

I wouldn't agree.

I think I should have the right to decide that the emotional pain I am in is unendurable and I want to end it all, just as I think I should have the right to decide that the physical pain I am in is unendurable and I want to end it all (but I understand that actually giving me this right in law may cause other people to suffer unreasonably).

I don't think anyone should have the right to tell me that it would be endurable if only I would undergo a medical intervention I don't want (for whatever reason I don't want it), so I must do that now, any more than I think people have the right to tell me I can't have the medical intervention I do want and should just bugger off and die already. And of course it shouldn't be forgotten that some people try all the existing medical interventions and find that none of them work.

I believe strongly that mental health care is important and valuable. That it should be available to everyone who wants it. But I also think that (as with any medical intervention) it should be up to the patient to decide whether they want to have it or not.

I mostly agree with this, save that I don't think 'Really' can stand as a sentence on its own. Aside from not being English, I can only understand it as meaning, "I affirm that what I previously wrote is true," which is redundant, because you wouldn't have written it otherwise.

Not necessarily. If one distinguishes between different levels of belief, then "Really." serves the useful purpose of bumping things up a level or two. No redundancy at all.

Is there a law that says that for something to make sense it must consist of sentences that are complete according to grammatical rules?

Really?

Quite right! Excessive pedantry is something up with which I will not put.

However, when I was young and at school, we were taught that a sentence not only started with a capital letter and ended with a full stop, but also contained meaning which could, at least to a limited degree, stand on its own.

I'd prefer it if people did not split sentences at the word "which", like:

He ate lunch at twelve. Which was the right time for lunch.

Yes, indeed, which was the right time for lunch? Why was there not a question mark at the end of a sentence beginning with the word "Which"?

Come to that, why do signs in some shop's have apostrophe's in plural's?

But we digress...

I think my views come down too:

1. It seems wrong for me - who has the privilege to be able to kill myself if I wanted that - to tell someone who doesn't have that choice that they have to live. Or that their loved one would spend the rest of his or her life in prison for helping them. I share the concerns about the attitudes that some people's lives aren't worth living. Though ultimately if an adult nonetheless comes to the decision to die, I don't feel that concern trumps their decision. I'd rather address that attitude more directly, than trying to deal with it by sending people to prison. I'm not saying that someone's life isn't worth living; rather that that judgement is up to them, not me.

2. I think it should be legal so that I would have the right, if ever something happened to me. Sure, maybe once it would have happened, I'd have no desire to die, but if so, it wouldn't be relevant anyway. But I want to have the choice.

(I agree that in practice we would need to deal with risks such as people being encouraged to die, but this doesn't change my fundamental view on what the law should be.)

I agree with this. Yes, we should give people all the support we can to live, but they should have the right to die, whether they can hold a cup of hemlock to their lips, or not.

My views are quite complicated and get muddled up with mental health, obviously, so I won't try to go into it now. You might want to see if the newsnight debate that followed is available on iplayer though, they had a number of camps represented and disabled people on both sides of the argument which was at leasst food for thought.

It is. I shall go and watch it now; thanks for the suggestion.

That was heartbreaking and by the end of it I was in tears - but I'm glad I watched it.

To me the cruelest part was the fact that people were forced to go "early" to ensure they could go at all. And that seemed so very wrong.

To me it seems simple - if we are willing to allow people to commit suicide - then it seems reasonable that we ensure that people can do so in a dignified and as painless as possible way.

I accept that I don't understand those 20% - but who am I to decide that for them?

I watched the documentary. I am a big supporter of assisted dying, but I found the program absolutely gut wrenching to watch. The two people followed seemed to be going so early. To me it seems a very different thing to do if a person avoids the last awful bit full of intensive care and intervention and if one flies to Zurich several years before that. I found the program more unsettling than I had expected.

I think the issue of whether to legalise assisted suicide is a difficult one, largely because (as you say) there is the unexamined ableism going on that is likely to push people towards a death they don't really want to stop themselves "being a burden". I think it's quite hard to weight up the right of person A to not have to face making that choice with all the pressure from family and friends verses the right of person B to not have to go on living through extreme, untreatable pain. I certainly wouldn't want to be the person drafting such a law and in the prevailing social climate I think it might be impossible to make such a law work as we would wish it.

I would have liked to see some consideration of whether people could be helped more to live, rather than being helped to die

Helped by whom?

The bitter truth is that effective support for life is not a mystery needing exploration: the issue, that no-one is willing to face up to is that providing support for life is way more expensive than not.

Also it is difficult, and can be very stressful and debilitating for people providing the support. That might make it difficult to recruit employees, and particularly difficult to recruit good ones, for care homes.

Good point! And although providing support is expensive, many of the people working to support others are paid little, if anything, above the minimum wage.

I admit freely that I look on this from the point of view of having a best friend with MS and a sister with incurable and continually worsening immunological issues that will kill her, and probably fairly soon. I would never ever want either of them to continue living beyond the point where they couldn't bear it, and best friend has made me promise ever since she was diagnosed that I would help her (legally!) if she ever decided to end her life (it's legal where she lives).

People's right to suicide is a given, we may not approve of their choice, but we would never take someone's right away to do that, unless that person was deemed incapable of rational decision.

So why do we get so up-in-arms about people who wish to commit suicide but physically cannot do the deed? I know there's hundreds of issues around the subject, not least people being potentially forced into the option, but I do believe that when it comes down to it, people should have to right to decide when to end their life. We have that option, so should people who need help pushing the button.

But how on *earth* you legalise for that ... I have *no* idea.

you legalise? pfff - legislate! I'm awake, honestly ...

Voice controlled switch? Controls such as used by Professor Hawking? Then nobody else has to take the final action.

That would be wonderful, if there was something universal - or some suite of universally accepted mechanisms - that all people could use

I've recorded it and am waiting to be in the right mood to watch.

While I can definitely see where you're coming from, I think perhaps the option of euthanasia after suitable counselling might actually lead to *fewer* suicides from the deeply depressed. The inevitable delay between the moment of decision and actually being able to act on it could be enough to allow people to change their minds. The process of arranging it may give more chances for help to be offered, and perhaps accepted. And for those who *do* still go through it after those checks and balances it might still be kinder on those left behind than hanging yourself or taking pills and leaving someone to find you, or just walking under a truck. You can only protect people from themselves a certain amount, even if they're ill.

And I speak as someone who has been horribly affected by the suicides of others and who would counsel everyone to do all they can to avoid it. It's something I've promised myself I won't do.

I found this article from

techiebabe very moving on the subject of having others to care for you:

http://flashsays.com/2011/06/13/carers-week-strange-love-stories/

Edited Date: 2011-06-15 02:31 pm (UTC)

...might actually lead to *fewer* suicides

That is a very good point. I was trying to think something like that myself but could not put it into words, so thanks for putting it so clearly.

I agree with

emarkienna and

naath and

lnr.