Monday 18 June 2012

Most people with locked-in syndrome do not wish to die

Tony Nicklinson is 58 and paralysed from the neck down after suffering a stroke in 2005. He is seeking legal permission for a doctor actively to end his life.

A Channel 4 Dispatches programme tonight,'Let our dad die', put Tony’s case with powerful emotion but it did not tell us that most people with locked-in syndrome do not actually think like this man.

No one can help but be sympathetic to Tony Nicklinson but cases like his are extremely rare and hard cases make bad law.

The overwhelming majority of people with severe disability - even with ‘locked-in syndrome’ - do not wish to die but rather want support to live and the longer people have locked-in syndrome then generally the better they learn to cope with it and find meaning, purpose and contentment within the confines of the condition.

‘Locked in, but still lost in music: UK's bravest DJ’ tells the story of Bram Harrison, 34, who suffered brain damage two weeks before his 21st birthday after falling head-first off his bicycle. He was left with locked-in syndrome and can move only his eyes and eye lids.

So he communicates with his eyes: looking up means yes, down means no, cross-eyed means don't know. He chooses letters and words by blinking at them on a screen, which his computer translates into the written and spoken word.

This allows him to easily respond to questions from his small army of committed carers about what he wants and how he feels and also to work as a DJ.

Not surprisingly the playlist for his Eye Life radio show takes weeks to put together but he still does it!

Martin Pistorius is a South African man who ended up paralysed and comatose following a throat infection at the age of 12. His awareness began to improve four years later and by the age of 19 had fully returned.

However it was a further five years before a therapist noticed that he was trying to communicate. The penny eventually dropped that he had been aware of everything going on around him for almost ten years whilst everybody had assumed he was unconscious.

Now, ten years later aged 36, he is married and runs a computer business despite being still in a wheel chair with limited limb movement and using computerised speech.

His autobiography,‘Ghost Boy’ tells the story.

Nikki Kenward was left disabled after a partial recovery from paralysis caused by Gullain Barre syndrome. Her own inspiring personal story is well worth a read. Now she campaigns telling people about the dangers that changing the law to allow assisted suicide or euthanasia would pose to those with serious disability.

Then there is Graham Miles, the pensioner who told how he beat ‘locked in syndrome’ after suffering a massive stroke.

But perhaps the most famous of all is Jean-Dominique Bauby, the French editor of Elle magazine, who suffered a severe stroke, from which he never recovered, and yet wrote, the autobiographical ‘Diving Bell and the Butterfly’ which was ‘dictated’ letter by letter and has been made into a major feature film.

Most people with locked-in syndrome are happy, according to the biggest survey of people with the condition.

The desire to die is not primarily about physical symptoms but about the particular person and their ability to adapt to living with a profound disability.

Much as we sympathise with Tony Nicklinson, we should not, as RCGP President Iona Heath argued recently, be seeking technical solutions like euthanasia to what is in reality an existential problem.

That would be a very dangerous precedent indeed.


  1. Why is it that those who claim to have the most empathy often have the least? This is always most notable when you compare someone who follows a belief system with someone who doesn't.

    It is not for anyone to say whether another person should live or die - the choice should be with the person and no one else - assuming they are of sound mind when they make the decision.

    No two individuals are ever alike and so it is near impossible to make sensible comparisons between them, even if they suffer from the same condition. That didn't stop the author, but then it never does.

  2. No man is an island. We all in live in community and our words and actions affect others.

    This is not about letting a person die. It is about changing the law to give doctors the power to kill people.

    That would be reckless and dangerous because doctors cannot be trusted with that kind of power. It is also wrong to be providing a 'medical' or 'technical' solution to what is in essence an existential problem.

    There are limits to choice even in a free society because allowing some people some choices undermines the freedom of vulnerable others.

  3. Your argument in the comments is that we shouldn't allow doctors to decide and I agree, doctors cannot be trusted with that kind of power, but the courts can and should be.

    Your article doesn't say that though, your article is saying it shouldn't be allowed at all, that is an indefensible position. If someone is in so much pain they should be allowed to end their life and if that means they need help to do so then it would be abusive not to do so. Please note I am using a wide meaning for the term pain, in some cases that could mean that the person is suffering mentally because of a physical disability - most disabled people manage to overcome such problems, not everyone could or does.

  4. Interesting article as the media portray locked-in syndrome as a condition where no - one ones to live. They should fit in with their articles your above title that not everyone with locked in syndrome wants to die.

  5. Why are some people asking for the "right to die", meaning the right to have someone else kill them? Suicides happen all the time, and it is now possible to do it efficiently since there is plenty of information out there in books etc. Those who wish to commit suicide will do it and may have the help of a loved one. Wives and husbands etc who have helped loved ones to do this are usually taken to court and dismissed in a wave of sympathy. In fact there is a protocol now in British courts that, where extreme suffering is proven in such cases there will not be any sentencing. So what is all publicity about? Some peoeple who want to die are encouraged by pro-death groups to seek publicity for the sake of a change in the law. Those who want to argue for a "right to die" can argue for that. What they cannot do, anywhere in the world, is argue for the right to force someone else to kill them - that could be a serious violation of another's conscience. Some will say that a "conscience clause" will be introduced. This would be a joke because such a clause was included in the provisions of the Abortion Act. It is a dead letter because in training hospitals and on wards it was not practically allowed (except in some isolated cases). This problem arose within ten to twenty years of the Act. In one parish in which I served two trainee nurses sent me a note that they wanted to see me because they were being pressurized into accepting work which involved abortions. I set up an interview. They did not attend. Taking the information from their note, it is easy to see why. Two other nurses have spoken to me about things that they have seen on wards (and this is years ago) relating to what I would certainly call infanticide. There are already known cases of very serious neglect of terminally-ill elderly people (something which we have never really got to the bottom of in terms of certain attitudes to terminally-ill people). With all of this in the background, and taking account of the fact that laws should not be enacted to answer individual needs but are for the "common good", any law allowing assisted suicide would be, in my view, not only be a catastrophic mistake but may even be unconstitutional. None of this means that I, or anyone else, is cold-hearted. There are other ways of dealing with suffering in this world rather than encouraging people to die or killing them.

    1. I am not going to read that wall of text, try paragraphs, they are your friend.

    2. Basically, he's saying that the problem with assisted dying is that it isn't the 'right to die' but 'the right to have somebody else kill you' (It's not against the law to kill yourself, and those who assist in 'mercy killings' normally get let off in court). This will lead to violations of conscience as we've seen with nurses and abortion - 'assist in killing what your conscience tells you is a human baby or lose your job'.

  6. Thank you Peter for providing this much needed perspective. Newsengland, with respect, I think you're missing the point. The point is not that some people are more empathetic than others, but that we're all capable of empathy and that empathy can be manipulated if we're not given all the information. It happened with abortion. We were all manipulated by the horror stories of women dying in backstreet abortions and the guilt that we would be responsible. Nobody wants to be heartless, but what our concern for these women has led to is a very high figure of abortion, many mothers (and fathers) put under pressure to do the 'responsible' thing, and Orwellian slogans like 'every child a wanted child'.

    We've become so dissensitised we can't see how chilling the implications of slogans like this are. It wouldn't surprise me if in my lifetime we were to see slogans like 'every life a wanted life' promoted by 'societies for the care of the elderly'. It seems that more and more the 'humane' thing to do in a difficult situation is to end life.

    This is CRAZY when you consider the resources that we have around us and the access to medical care that our ancestors couldn't have dreamed of. See my comment on 'How many women really died from abortions ...' - think about the risks our great-grandparents and great-great-great-great grandparents took to preserve the life of a child that quite possibly wouldn't live past a year old. Look at how they respected and cared for the elderly. If they hadn't done that, we wouldn't be here! When life was less certain, life was more precious.

    1. PS are the paragraphs short enough for you, newsengland ;)

    2. They are very nice, thank you for your concern ;o)

      wrt abortion - even if there were no deaths or injuries from badly performed back street abortions I would still be pro-choice. For me that issue comes down to one thing only, whose body is it - the rest of the arguments are just window dressing.

      I have the same stance with regard to euthanasia / assisted dying / mercy killings. If it isn't your body, you shouldn't have a say - however, the god squad insist that we must do things their way. This is what annoys me most about religion, the religious aren't happy with their own lives so they have to interfere with others and start telling them how to live their lives.

    3. With respect to abortion who does the body of the baby belong to and who therefore has a right to kill it?

      With regard to euthanasia one of the main groups opposing change in the law is the disability rights lobby of whom only a small proportion are religious.

      This is primarily a discussion not about religion but about public safety.

      The parliamentarians who on three occasions in the last sex years in Britain have rejected bills aimed at legalising assisted suicide have not done so on religious grounds.

    4. Hilarious typo Peter - we no longer have plain old years in Britain, but 'sex years' - absolutely everything is about sex!

      Newsengland, I appreciate your concerns about religion, but you're not engaging with the arguments. I agree that 'religion' in the sense of picking random verses out of a holy book and turning them into laws imposed on other people is a bad thing. That's not what I'm doing, and that's not what I see Peter doing in these posts.

      I also agree with you that spending all your time finding things to criticise in other people because you're not at peace within yourself is a bad thing. That's called 'being judgemental' and is not a healthy attitude to others. I can't guess Peter's motivations for writing this blog, but he doesn't come across as being full of bitterness with life to me. Some of your posts, however, can sometimes be a bit judgemental of people who disagree with you. (The Bible, incidentally, is very against both 'religion' and judgementalism).

      It seems like you're saying 'you people are religious, therefore your views aren't based on logic, therefore I don't have to engage with them'. Is that what you think?

      You're not engaging with the point that's being made, which is that any death other than suicide involves at least two people. Therefore, this NOT about one individual and their own body, but and issue about the responsibilities of the medical profession, the family, caring professions such as old people's homes and disability charities, and society in general. In what ways do you envisage them being involved in another's death?

    5. Oh dear. Embarrassing typo but I will let it stand.

  7. @ Peter
    With respect to abortion who does the body of the baby belong to and who therefore has a right to kill it?

    There is no baby, there is only an embryo or foetus, it is part of the mother, her rights trump that of anything growing within her.

    This is primarily a discussion not about religion but about public safety.

    As I already said, it should be down to the courts to decide on a case by case basis, but they should not overrule a persons wishes if said person is of sound mind. Additionally they should not be influenced by religion.

    The parliamentarians who on three occasions in the last six years in Britain have rejected bills aimed at legalising assisted suicide have not done so on religious grounds.

    It doesn't matter if they have rejected it every day for the last hundred years, it should still be the right of any person to die if they so wish, who are you or I to say that a persons life has quality or not.


    It seems like you're saying 'you people are religious, therefore your views aren't based on logic, therefore I don't have to engage with them'. Is that what you think?

    Religious views aren't based on any sort of logic, you are correct. I am as dismissive of religious views as the author of this blog is of my views, it is a two way street - for example: the author posted tracts from the bible in a recent post, I posted tracts from the same bible and got accused of cherry picking verses. Its true I did cherry pick them, but so had the author when he posted his. The author was upset that I had pulled the exact same stunt as him, but the verses I chose made him or his religion look silly. It isn't my fault that the bible is so contradictory and easy to use against religious folks, I didn't write it (but then neither did some god)

    Back on topic.
    I believe I am engaging, I have already explained that it should be the right for anyone to die if they so choose, unfortunately you may not have seen all the posts I have made responding to this topic as Peter has decided to post about it several times within just the last week.

    As I have said before, I am sure that if a law was passed which legalised assisted suicide (with the condition that each case was decided upon by a judge) then there would be plenty of doctors and nurses who would be willing to work in centres that specialised in helping people to die. No, it wouldn't be everyone's cup of tea and I wouldn't expect it to be, but if it helped relieve suffering I am sure there would be plenty of doctors who would be willing to to work there.

    With regard to euthanasia one of the main groups opposing change in the law is the disability rights lobby of whom only a small proportion are religious.

    Why do you think that is? I would suggest it is because of a lack of trust between those disabled people and the rest of society, many of them have spent their lives being discriminated against - so we shouldn't be surprised that they feel threatened by any such law, especially when we have people like you suggesting that any euthanasia law would be like the Nazis in the 1930's and would result in the disabled being killed (which if you remember you said last week when you posted about euthanasia)

    1. Sorry, I cant edit...

      I said you posted about that (about the 1930's) last week, it was actually last year. I realised just after I posted, I was thinking it was last week as I replied to it recently, its this post.

    2. Newsengland, I'm finding it more and more difficult to follow what you're saying. As far as I can see, Peter is not dismissive of your views. He responds to many of your comments, and always using logic. If you take Bible verses out of context, he explains the context. If you come up with an argument for euthenasia, he explains where he sees the problems. If he were dismissive of your opinions, he wouldn't even post them!

      With regard to euthenasia, you seem to be stating the same thing over and over again - that it's the individual's choice, that the courts should make a decision on a case-by-case basis, and that those doctors and nurses willing to assist in suicide should be allowed to do so. You keep asserting, as a matter of faith, without any evidence or basis, that there would not, and could not, be any abuse of the system if assisted dying were made lawful. This is despite many people (whether of faith or not) posting on this blog evidence of where there has been abuse in countries where euthenasia is lawful, and parallel examples of abuses of conscience in cases of abortion.

      How can you claim that it's religious views aren't based on logic of any sort when it is you that continually makes assertions based on your own convictions without any evidence? If I'm being really honest, your view of 'religious people' (and I'm not even sure what you mean by that) is based entirely in prejudice, which is ironic considering that what you keep accusing Peter of is prejudice.

    3. It should be plainly obvious why I say religious views aren't based on logic, I am not going to draw you a map.

      I am not making assertions based on a lack of evidence, I am making assertions based on the way the law in the UK works.

      To clarify: religious people = theists (I thought this was obvious)

      It may well be that my view of theists is prejudice, I struggle not to view them as simpletons, I don't always succeed.

    4. At the risk of sounding patronising, let me offer you some advice of phrasing your arguments.

      'Peter, I appreciate your concern that a euthenasia law could be abused, however, I believe it would be possible to construct a law with adequate safe guards so that this possibility would be kept to a minimum. I believe the suffering of patients who wish to die and are denied the right is of greater concern when weighed against the slim possibility that the system.'

      Doesn't that sound better than 'Peter, you're an underdeveloped human being, incapable of empathy. You're a prejudiced religious simpleton who wants people to suffer just to appease your vicious, petulant God (otherwise known as your invisible friend).'

      This is the difference between rational discussion and ad hominem.

    5. oops, that should have been 'advice on how you could rephrase your argument' and 'the slim possibility that the system could be manipulated for immoral ends.'

      Typing too fast!

    6. At the risk of sounding patronising...
      It has never stopped theists before and it hasn't stopped you now.

      Accusing someone of an ad hominem attacks on another who holds unprovable views and sticks to them like glue is foolish. It is not possible to attack the idea without an element of ad hominem when the person sticks to their ludicrous and unprovable view so closely. Therefore I reject your claim that I have made unreasonable personal attacks (feel free to quote anything I have said, in context, to prove your point)

      This is especially true in the case of theists who will continue to claim there is some man in the sky who laid out a set of rules that everyone must obey.

      I honestly don't mind if I come across as belligerent as I am not here to make friends - I am here to get the point across that religion is just a bunch of made up nonsense and anyone who believes in it is blinkered and backward thinking.

      I realise it is hard for people to escape the clutches of religion as in most cases it is something they have been brought up to believe, but it is even harder for people like me to put up with goofballs who keep trying to push our whole of our society back into the dark ages.

    7. There you go again! This isn't argument, this is just your own assumptions about people who believe in God.

      I really DON'T want to be patronising, newsengland, but if you continue in this manner why should any of us have a discussion with you?

    8. Any assumptions I have made are based purely on fact.

      For example, I said I find it hard not to view theists as simpletons. Hopefully this chart will help explain it to you a little better.

      If you don't want to respond to me that is your right, but please realise that I will see it as a sign of your inability to contradict what I have said using facts and logic.

  8. 'As I already said, it should be down to the courts to decide on a case by case basis, but they should not overrule a persons wishes if said person is of sound mind. Additionally they should not be influenced by religion.'

    1) I'm not sure how realistic or desirable it would be to have a long drawn out court case for everyone who wished to die.

    2) What do you mean by 'influenced by religion'? As far as I understand it, a court should only be influenced by the law, but what influences the law? Some people might say 'all human life is precious because it is made in the image of God' and some might say 'the value of life is contingent on circumstances because there is no God and we're only a clump of cells (though a more sophisticated clump of cells than a fetus).' I'm not sure that one position is any more neutral than the other, and I'm not sure I would trust an atheist law maker more than a theist one.

    1. 1) I'm not sure how realistic or desirable it would be to have a long drawn out court case for everyone who wished to die.

      Why should it be long or drawn out - do you foresee batches of lawyers fighting for and against each case ? I don't.

      What do you mean by 'influenced by religion'? ... I'm not sure that one position is any more neutral than the other, and I'm not sure I would trust an atheist law maker more than a theist one...

      I think you know what I mean by 'influenced by religion' I think you are just trying to be difficult, I shall however explain it:
      Religious texts, ie thou shalt, thou shalt not, should have no influence over the laws of the land.
      We already manage to ignore such nonsense from the bible as "selling our daughters into slavery" (Exodus 21:7) and we don't "kill people who choose to work on the Sabbath" (Exodus 35:2) and we don't "stone to death those who choose to plant two different crops in one field" or "those who wear clothes made of two different fabrics" (Lev.19:19)

      As for whether you would trust a theist or atheist lawmaker the choice should be obvious, one of them has one less imaginary friend than the other.

    2. I really wasn't trying to be difficult.

      1) picking random verses out of a holy book without trying to make any sense of them is a pretty narrow sense of religious. If that's what you mean by religious, then I certainly am NOT 'religious' and neither is this blog.

      2) a theist may not believe that it is possible for a human being to have a personal relationship with the creator, so why do you assume that one view of the universe is more reliable than the other?

      3) I believe quite a lot of our laws, morals, constitution are derived from scriptural principles.

    3. 1. If you want your bible taken seriously then you must take it seriously. You don't because it is a load of nonsense - as shown in the verses I listed. I did not randomly pick those verses, I chose them in a deliberate effort to show just how ridiculous the bible is.

      2. Hang on, you are using the word 'creator' as if it is a given fact of who 'the creator' is or even that there is a 'creator'. It isn't a given and unless you can prove it is then you should withdraw your unprovable argument.

      You suggest that I make assumptions about the universe which lead me to a certain belief, that is not the case. I do not need to make assumptions, I rely upon the evidence that science provides and can prove. This is something that theists struggle to understand, my viewpoint is one of the natural, not the supernatural.

      3. You are mistaken, our laws are mostly derived from the ancient Greek laws. They may coincide with things the bible says, but that just proves that like minded people thought that there were general principles that should be commonplace.

    4. 1) I'm not the best person to go into all the reasons why we don't follow all the laws of Leviticus any longer, but I think we've had this discussion on this blog before.

      2) I perhaps didn't word that very well. The reason you gave for not trusting a judge who happened to have come to the conclusion that God exists was that he had an 'invisible friend'. I was simply pointing out that not all theists believe that you can have a personal relationship with God in the same way that Christians do, so they don't have an 'invisible friend' telling them what to do. They've simply looked at the evidence and come to a different conclusion from you.

      3) Again, law not really my area, but I think it depends on the area of law.

    5. 1. You're backtracking. Either argue your point or admit defeat, don't suddenly say you aren't up to the task you when you were the one who decided to try and pull me on the point. This blog quotes the bible numerous times, when anyone else does so they are told they are taking it out of context, its the same BS excuse that theists always come back to.

      2. You are redefining. It does not matter if you believe in a personal god or not. Theism is a belief in the supernatural, people who believe in the supernatural cannot be trusted to make well balanced decisions. Additionally I said 'imaginary friend' not 'invisible friend' - there is a subtle, and I feel important, difference.

      3. Backtracking again.

      You can keep changing, redefining and backtracking all you like, it wont change the fact that in almost every case: theism is belief in the supernatural based on ancient texts which were written 100's of years after the supposed incidents took place. At very best they are second or third hand accounts.

    6. Lots of theists don't base their views on scriptural texts.

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    paralysed people can communicate


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