Over the past day or so there has been a lot of coverage online about Sir Terry Pratchett’s Dimbleby Lecture (text here). Sir Terry is, of course, a good friend of many people I know. He’s also very clearly a very brave man. It is no wonder that the SF community loves him. Support for his position is overwhelming, but it is not 100%.
Out in New Zealand lives a friend of mine called Nic Steenhout (who I only know via Twitter). Nic happens to need a wheelchair to get about, and he doesn’t support Sir Terry’s position.
In case you didn’t click through, that’s not because he wants to deny Sir Terry the right to die. He’s perfectly OK with suicide. It is “physician assisted” suicide that worries him, because like any other form of government bureaucracy it is open to abuse.
In Sir Terry’s case I don’t think many people would disagree that his illness, if not treated, will eventually make his life not worth living. By the end he probably won’t be Sir Terry any more, because everything that made him who he is will have been eaten away by the disease. His right to avoid that fate is pretty much unarguable. But the debate about assisted suicide is about much more than Alzheimer’s. It is about whether or not people are deemed worth keeping alive, about whether people have right to life.
That might seem odd to you, but it doesn’t to Nic because, as he said on Twitter this morning, he has had people say to his face, “if I had to be in a wheelchair I’d kill myself.” The implication being that people in wheelchairs are somehow useless, a burden on society, people who don’t deserve to live. There’s nothing in what Sir Terry proposes that would give any doctor the right to terminate someone’s life just because they are confined to a wheelchair, but that isn’t going to stop people putting pressure on those who are. Just look at the ferocity of the heathcare debate in the US. Many of those opposed to government-funded heathcare are very clear about their views: those who get sick and can’t afford treatment should be left to die, society should not help them.
It goes further than that as well. Any debate over suicide ought to look at those social groups where suicide is most common and see what changes in the law might mean for them. And one group where suicide is depressingly common is trans people. In many cases, of course, trans people kill themselves because they can no longer stand the violence and abuse directed at them by the public, and because they feel that they can never have a “normal” life. Yet these are not people who have any physical disability. Often they are very intelligent and capable. They are people who are socially disabled, people who have been defined as useless, or even a threat, because other people don’t like them. People whom the Pope claims are a greater threat to the planet than climate change. It is no wonder that many trans people end up thinking that their lives are not worth living.
You really don’t have a handle on the idea of “assisted suicide” until you have had a family member tell you that it is your duty to “do the right thing” and kill yourself so that you don’t bring any further shame on him or her.
None of this has any bearing on Sir Terry’s individual right to control his own life. In his position I’d want the right to die with dignity too. I might even be grateful for some assistance. But the idea of government-sanctioned panels run by doctors worries me. And given how people in wheelchairs tend to get treated I can see why Nic is worried too.
This is a hugely difficult subject and it needs much, much care. There is also the issue that with some terminal conditions, a personality can change that the new one may well have different views than they held previously. Who can say which ‘version’ takes precedence? I would not like to, certainly. For me, at least, every single case must be considered by itself in the light of its specific circumstances.
As someone who has had experience of mental health issues, these present yet another area requiring great caution and care. I tend to support the idea of a right to die (the Diane Pretty case was heart-breaking) but never the right to influence others to die.
Thanks for this post, and for the links to Sir Terry’s and Nic Steenhout’s statements. All three caused me to think, and to realize there are no easy answers to this question. I would point out, though, that Nic seems to mischaracterize Sir Terry’s position. Nic states that Sir Terry “wants to die” and that’s not at all what he said. I believe that he said that he wants the reassurance that he could make the choice to die, but that every day (so far) he would make the choice to live.
Whatever the rights and wrongs of assisted suicide, I want my doctor to have exactly one job – keeping me alive. I don’t want him to have an alternative treatment in mind that involves me not being alive.
If there are to be people whose job it is to end lives, painlessly and ethically, then let them have that as a job. It’s quite a distinct job from keeping people alive.
I disagree with Terry, but understand his viewpoint. He has a right to die: but he doesn’t have a right to involve others in it, from where I stand. That’s just not supportable, from many perspectives.
The point I adhere to, is that all people who are dying (which is all of us, actually) should be given everything they need to die with dignity and care and respect.
Hastening the death, doesn’t come under that, for me. Dying is hard. There are no easy deaths. There are just quicker ones. Making it quicker by another’s hand, isn’t actually going to help anyone. Death is hard. Dying is hard. So is life.
Many people who’ve gone to assisted suicide have had very little wrong with them. Many would have fulfilled lives with support, care and respect. Many people with far worse illnesses than those who have already killed themselves, live happy and fulfilled lives.
Dying is a process that should be seen through. No matter how hard it is.
The challenge to us as humans, is enabling everyone who is dying, to do so well. Quickening the death is the opt out choice – the default on “oh it’s all too overwhelming and lets just cut to the end.” The harder choice is turning the overwhelming into a dignified and respectful journey – in its own time.
The issue with Terry, of course, is that he doesn’t have an illness that will kill him. He doesn’t want to quicken a death – he wants to avoid the process of an illness. Which is perfectly understandable. But have an illness versus death isn’t a very useful equation.
It is the illness he wants to circumvent, not that he wants to die. The only way for him NOT to have to carry on Alzheimer’s at the moment, is for him to die before it affects him too much. Define, ‘too much’? That’s what the panel would end up deciding – if his case tips into ‘too much’ to carry, or not? How can that every be done, without it being “If you ask, you get?” One person’s too much is another’s very comfortable life.
It’s his choice to kill himself: it’s not his right to have others help him. It’s simply not supportable, across the spectra of all human situations. These panels would not be helping Terry decide what to do about Terry: they’d be life and death for hundreds of thousands of other people: vulnerable, confused, depressed and terrified of life.
Let’s support people in living. No matter how ill they are.
Many people who’ve gone to assisted suicide have had very little wrong with them. Many would have fulfilled lives with support, care and respect.
Yes, this is what worries me. And in the case of trans people they may not even need support or care, all they need is respect.
Not that I wouldn’t want the same way out as Sir Pratchett, but choosing to die because there is no treatment for your disease is like giving up your children for adoption because you have no way to support them, not because you don’t want them.
I wonder whether most folks’ ethical calculations include the broken society that forces some of our most painful decisions.
If my loved ones disapproved of me continuing to live, it would work as well as their disapproval of my potentially choosing not to be alive does, which is a scary thought.
It is one thing to consider one’s own life, but a very different thing to consider other peoples’, and I think something the USians forget (speaking as one) all too often is that no person can be an island, even if they become a hermit and live in the woods with a stockpile of artillery.
Our society is built around our dependency on one each other. When you lose one family, you have to build another.
I could quote W.H. Auden here from his poem “September 1939”, but I think I’ve said it by now.
“In Sir Terry’s case I don’t think many people would disagree that his illness, if not treated, will eventually make his life not worth living. By the end he probably won’t be Sir Terry any more, because everything that made him who he is will have been eaten away by the disease. His right to avoid that fate is pretty much unarguable.”
First, I am one of the “not 100%.” I think you would be surprised by just how large that number would actually be. As an RN who has worked in long term care with many people with various forms of dementia, I can tell you that characterizing someone’s life as “not worth living” is inaccurate. Many people with dementia live fulfilling, though different lives than they did before the progression of their illness. My mother, while she cannot retain a conversation in her head for 5 seconds, still enjoys her life. She spends time with the cats, watches the birds at the bird feeder, goes out to eat with the family, reads recipes, watches television, etc. She is irritating as hell because I have to answer the same question over and over and over. We’ve had the same discussion about why she can’t go back to her apartment and live by herself a couple of times a day since she moved in with us in September, but still for the most part she enjoys her life. And the bits of unpleasantness that occur when she gets angry because she cannot have her way- I go to the bathroom, hide for a couple of minutes, and when I come out, she’s forgotten the conversation ever happened. If there’s a shortcoming it’s not on her part, it’s on mine. People with dementias continue to teach others throughout their lives as long as the others are willing to learn. We learn patience, compassion, creative problem solving, and how to love those who have little to give back in return. I hope Sir Terry NEVER gets to the point where he decides that he’s no longer enjoying life enough to be alive. Besides- if he does get to that point, he’s probably no longer competent to make the decision, and a person who is standing in as Guardian or POA will not be able to adequately assess his mental state to make such a decision either because his answers won’t be trustworthy.
Thank you, that was very enlightening.
I’m not enough of a specialist to know exactly what will happen to Sir Terry or to other people with similar illnesses. However, as someone who lives largely by her brain, what scares me most about dementia is not the stage where I am essentially childlike, but the prospect of going through a phase when I still know what I used to be able to do, but am no longer able to do it. I have no idea whether this actually happens. Can you throw any light on this?
I should add also that people like you are in very short supply, and many people suffering from dementia are unlikely to be able to get the excellent care you are providing for your mother. That’s also very scary.
Yes, that does indeed happen, but from what I’ve seen it’s not as bad as you might think. It is most often offset by a few things- first, that awareness of “what I used to be able to do but can no longer do” is often fleeting, largely as a result of impaired short term memory. You think about it, get distracted, and forget what you were thinking about. There are people who perseverate, but that is usually about something relatively unimportant, and often about things that don’t upset them. For instance, my mother-in-law (who also lived with dementia for about 10 years) would perseverate on the topic of the car that my father in law had left to my husband. She talked about how it was “her car” even though she had never driven in her life. She’d look out the window and admire it. She’d say “Maybe I should go get a driver’s license.” I’d shudder in horror, and change the subject. She’d forget that line of thought almost immediately, but she’d still talk about the car 10-20 times a day! Have you by chance seen the movie “The Notebook”? That was pretty well done, and it showed both positive (in terms of what works) and negative (what doesn’t) responses to people who have dementia when they have those momentary breakthroughs. It’s seldom worth arguing, because in general you can’t win, and even if you do, they forget that you did, and you end up stuck in a circular conversation. From a caregiver perspective, often the best weapon I have against Mom trapping herself in that cycle of thought is simple, quick, redirection of the conversation. “I’m sorry you feel that—oh, hey look- is that a cardinal at the birdfeeder? Yes, it is! Do you think it’s a male or a female?”
Thanks, that’s very reassuring.
I haven’t read Sir Terry’s speech yet, but I can partially answer one of the concerns you raise. One of the provisions of the assisted-suicide law here in Oregon is that certain demographic data is reported once a year about the people who use it. This was in part because of worries that it would be used to pressure more vulnerable members of society into ending their lives prematurely.
What they’ve found instead is that the people making use of the law are overwhelmingly white and well-educated, with a slight bias toward men. In other words, it’s actually the most privileged members of society who are choosing this path to end their lives.
But I see from that data that 152 people have chosen to kill themselves because they felt that they were a burden on their friends and family, and 11 because they could not afford treatment for their condition.
Indeed, those are mentioned as reasons, but by looking at the percentages, you can see that people give multiple reasons, and the overwhelming ones are personal quality-of-life issues. Also that the percentage of people citing financial reasons is steady and the “burden” percentage is trending down.
Moreover, anyone who gives money and relatives as their only reasons, without citing anything about their quality of life, is going to find themselves getting rerouted into counseling (which the law explicitly requires if there is any suspicion of depression or otherwise impaired judgement).
I believe the next objection is that the medical system is crawling with unscrupulous or incompetent doctors who never bother evaluating a patient’s state of mind, but Sir Terry has already answered that one.
I believe the next objection is that the medical system is crawling with unscrupulous or incompetent doctors who never bother evaluating a patient’s state of mind
Yep, the medical system boasts many unscrupulous doctors who would happily encourage trans people to kill themselves, and indeed devote their lives to inventing mental “illnesses” as an excuse to deny treatment and torture people. Sir Terry, I’m sure, would be well cared for. Other people may not be so lucky.
I meant his reference to the JME review.
IMH>O, if they feel that they are a burden on their friends and family, that’s either a shortcoming in the character of their friends and family for causing them to feel that way (Nic’s concern), or a shortcoming of their own for not being willing to see that many of us will happily do something to allow a friend to continue to be a friend, rather than someone “of blessed memory.” Pride, in this case, is literally a deadly sin. In the course of my own illness, I’ve learned that we need to be willing to accept the gift of care when we are in need as well as provide it when we are able. To spit in the face of people who are willing and eager to give is to not only be ungrateful and rude, but to rob them of the joy of giving. If, on the other hand, they cannot afford treatment then it’s a societal shortcoming that should be remedied. While I’m not 100% behind the NHS model, I’m also not for the “if they can’t afford it, tough luck” model. Perhaps if the NHS dropped all elective procedures (other than reconstructive after accident/illness) they might be able to afford actual life-saving, disease controlling, or pain-controlling treatments for those who need them. Cheryl, could you drop me a note off line? I have a couple of NHS related questions that I’d like to ask you that probably would not be appropriate here.
The healthy and strong individual is the one who asks for help when he needs it. Whether he’s got an abscess on his knee or in his soul.
~Rona Barrett
Cheryl, thank you for the wonderful blog post. Much appreciated.
You wrote:
“[Nic is] perfectly OK with suicide. It is “physician assisted” suicide that worries him”
A small correction, which does make a big difference. It is the *legalisation* of physician assisted suicide that worries me.
And thanks to all the great comments. This discussion is important. And it must be taken to the legislators! 🙂
I strongly suspect that Sir Terry was using the Dimbleby Lecture to maintain the momentum of his campaign to heighten the profile of research into Alzheimer’s disease and the disgraceful difficulty that the average Alzheimer’s disease victim has of obtaining effective, and expensive, prescribed medication within the UK NH Service … there’s a very sharp and politically astute mind behind that benign and avuncular public persona. Terry’s timing looks to me to be near perfect .. Worthy of Havelock Vetinari.
Of course suicide is an appallingly emotive issue and ‘Officially ‘ sanctioned and medically assisted assisted suicide a good deal more so, especially when it is linked to what used to be called ‘ senile dementia ‘ not so very long ago, but it certainly got peoples attention didn’t it? And it certainly got people thinking about alternatives to the ultimate Alzheimer’s “Cure for Cancer ” As for these ‘Brave New World’ ish Councils of Scientists or Tribunals Of The Good and the Worthy – I don’t like the sound of them at all!
I share the general unease about these benign tribunals that would sanction medically assisted suicide. The practical difficulties in setting up and operating such tribunals would probably be insurmountable in the UK which is just as well given the potential for misuse. Even discounting medical abuse by those of Dr Harold Shipman’s persuasion maintaining medical standards is hard enough already without raising the States Entitlement to Kill When Convenient as a practical possibility.
There was a segment of Terrys talk that covered what could be called the ‘tradition ‘ of doctors unofficially terminating the lives of their long suffering patients. All very well if you can rely on the integrity of those doctors of yore, but …how many of them were Shipmans? Remember how hard it was to catch Shipman? A quick google gives this …
” On 31 January 2000, a jury found Shipman guilty of 15 murders. He was sentenced to life imprisonment and the judge recommended that he never be released. The whole life tariff was confirmed by the Home Secretary a little over two years later.
After his trial, the Shipman Inquiry, chaired by Dame Janet Smith, decided there was enough evidence to suggest Shipman had probably killed about 250 people, of whom 218 could be positively identified. About 80% of his victims were women. His youngest victim was Peter Lewis , a 41-year-old man.[2] Much of Britain’s legal structure concerning health care and medicine was reviewed and modified as a direct and indirect result of Shipman’s crimes, especially after the findings of the Shipman Inquiry, which began on 1 September 2000 and lasted almost two years. Shipman is the only British doctor found guilty of murdering his patients.[3] ”
‘ About 80% of his victims were women. ‘
I wonder how many old and senile women were eased out of this world by their – mostly male – doctors in the Good Old Days of Queen Victoria?
It seems to me that if you have an acceptance of state sanctioned, medically administered, termination on grounds of intractable medical condition we could drift back to the good old days and I’d like the Medical professions to err on the side of keeping me alive and not signing me off for the greater good of the state and the local medical clinics budgetary control.
Hey Arnold, thanks for that. Shipman surpasses even Kevorkian. Majority of Kevorkian’s victims were women. Majority were no more disabled than I. He was tried for murder thrice. It only worked once. nearly 150 people, he killed. He went to jail, was released early for “good behaviour”, and is back on the circuit advocating for legalising physician assisted suicide…
On Shipman and his like Nic.
My memory is not what it was! I’ve been trying desperately hard to remember the title of the Sherlock Holmes story in which DR Sir Arthur Conan Doyle had Holmes speak of of just how dangerous medical doctors are when they turn to crime …
“When a doctor does go wrong, he is the first of criminals.He has nerve and he has knowledge.”
Two bouts of Clinical Depression and treatment for the same have not been kind to my ability to recall fine detail on demand. Of course one of the principle symptoms of Melancholia is compulsive thoughts of suicide .. and suicide, like cancer, was one of the Great Social Taboos not so very long ago. At one time coroners in the UK would move heaven, earth, and the law in order not to have to find a verdict of suicide . This is touched upon in Sir Terry’s ‘ Lecture ‘. Which lecture is much less stiff and academic than that term would seem to imply and I see that it is available on the BBCs I player ..
http://www.bbc.co.uk/iplayer/episode/b00qmfgn/Richard_Dimbleby_Lecture_Shaking_Hands_with_Death/
For my own part – and aside from the merits of the Lecture which really is very provocative in the best meaning of the term – I’m glad to have seen the library in which the lecture took place. Such a Library ! …. I WANT IT!
Returning hastily to grim reality I’ll just mention that I recently came upon an interesting article which does make the Holmes quotation which is why it came to mind so easily ..
When Doctors Become Terrorists
Simon Wessely, M.D.
http://kcl.ac.uk/kcmhr/information/publications/articles/terrorism/nejmdoctorsterrorists.pdf
Wessely says ..” And some of the qualities that
can make one a good surgeon or public health physician can become perverted. Medical metaphors
were used to justify every stage of the Nazi genocidal campaign against the sick, the mentally
ill, and the racially impure. Nazi discourse repeatedly described the Jew as a bacillus, an infection that needed to be eradicated from society, or as an abscess on the German body politic that only surgery could cure. “