Monday 12 March 2012

Case of locked-in syndrome seeks to establish dangerous precedent

Legal action brought by a locked-in syndrome sufferer, who wants a doctor to be able to end his ‘intolerable’ life lawfully, can go ahead following a judge's ruling today.

The Ministry of Justice had previously argued that the case should be struck out on the grounds that it is a matter for parliament, rather than the courts, to decide.

But the judge's ruling today means that Mr Nicklinson's case will go to a full hearing, where medical evidence can be heard.

Tony Nicklinson is 57 and paralysed from the neck down after suffering a stroke. I have blogged on this case in some detail previously so will not review the background again here except to say that Nicklinson himself believes that assisted suicide should be available to anybody over 18 who wants it and not just the terminally ill.

Nicklinson's legal team will be arguing:

1.'Necessity' can, in these circumstances, be a defence to murder (see my previous blog post for details about what this means)
2. The existing law of murder, insofar as it denies Nicklinson the chance to be actively killed at his request, is incompatible with Article 8 of the ECHR (European Convention of Human Rights) - dealing with 'right to respect for private and family life'.

The key point to grasp about this case is that Nicklinson, because he is not capable of killing himself even with assistance, is not seeking assisted suicide but euthanasia. So this is an assault on the Murder Act 1965 and not the Suicide Act 1961.

Nicklinson is pushing for an even greater change in the law than either the controversial Falconer Commission on ‘Assisted Dying’ or the lobby group Dignity in Dying (formerly the Voluntary Euthanasia Society). They claim to be campaigning for assisted suicide for people who are terminally ill – but euthanasia is one step further than assisted suicide and Nicklinson is not terminally ill.

Such a change would have far reaching implications by potentially removing legal protection from large numbers of sick and disabled people.

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

Nicklinson has the right to refuse treatment under existing law, and could do so, but what he is seeking to do instead is to give doctors the power to kill in specific circumstances on grounds of ‘necessity’. That would be a very dangerous precedent indeed.

The current law is clear and right and does not need fixing or further weakening. On the one hand the penalties it holds in reserve act as a powerful deterrent to exploitation and abuse by those who might have an interest, financial or otherwise, in the deaths of vulnerable people. On the other hand the law gives judges some discretion to temper justice with mercy when sentencing in hard cases. We should not be meddling with it.

Any further removal of legal protection by creating exceptions for bringing prosecutions would encourage unscrupulous people to take liberties and would place more vulnerable people – those who are elderly, disabled, sick or depressed – under pressure to end their lives so as not impose a burden on family, carers or society.

Even in a free democratic society there are limits to choice. Every law limits choice and stops some people doing what they might desperately wish to do but this is necessary in order to maintain protection for others. No man is an island and this case is about much more than Tony Nicklinson.


  1. Your last link (5 paragraphs up) is slightly broken (a missing colon) and its the one I wanted to discuss.

    Telegraph article link.

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

    However I believe the most important part of the whole Telegraph article, only spotted by those of us who read things right to the end, was this...

    Experts behind the research, published in the journal BMJ Open, said their findings could be subject to bias, with those people with the lowest quality of life not responding.

    I think it is irresponsible for all concerned - from the original researchers, via the Telegraph and now you - to suggest that this small exclusive sample size offers any objective evidence or statistics.

    What really irritates me is the automatic reaction which makes you (and lots of people who have the same opinion) suspect that others would be killing off their relatives willy nilly. Let us not forget that murder is quite a rare thing in the UK (2010 rate: 1.23 murders per 100,000 population) and the last person who was caught killing off lots of others was a Doctor.

    I am in the lucky position where I know my wife would assist me in ending it if I were in a similar position to Mr Nicklinson, and I would do the same for her.

    I think what so many of you misunderstand is that those of us who would help our partners to do such a thing would not do so out of malice but out of love and respect for the person.

    I could not, and would not want to, live in Mr Nicklinson's position and I really hope he wins his case and gets the peace he is seeking.

    1. I don't know Peter Saunders but I respect what he believes and what he's trying to communicate here.
      God is the giver of ALL life. He has numbered our days. No one has the right to take anyone's life, irrelevant of your beliefs. All life is precious and suffering, unfortunately is part of it. No one ever promised that our life, whether we live for five minutes or 100 years, is guaranteed to be full of optimum health and Peter Saunders is correct in saying that a very dangerous precedent would be set in allowing others the power to end someone's life. Peter Saunders is not suggesting at all that anyone would start killing their relatives "willy nilly". How irresponsible to even think that.
      There's nothing to misunderstand about your beliefs, but neither Peter or I'm sure his colleagues are trying to hit you over the head with their beliefs on this very controversial & personal issue. God loves you so much, believe it or not, and wouldn't want you to even consider for a moment taking someone's life, whether they asked you to or not.

  2. I agree with newsengland. I hope for his own sake that he wins. It is after all about respecting his wishes, not those of the doctors treating him. I am not surprised that religious doctors would rather he had to suffer than get his wishes. After all, in 2010 a report was published in the Journal of Medical Ethics that stated doctors with strong religious convictions are less likely even to discuss with the patient about their willingness to make decisions that could hasten death. Says it all really. That's why one should ask about the religious beliefs of their doctors in such situations!

    1. Mr. GayAtheist, I'm amused how your minority rank highest on the pole, to continue the threat to our minority. As long as you selfish, now considered "normal" folks can get what you want, when you want it, our minority is disposable.

    2. Normal is a subjective term, always has been and always will be.

      If you are going to use the term 'our minority' it would be helpful if you could tell us who 'your minority' is.

      if 'your minority' is:
      disabled people - I will fight for your right to be treated as equal to every other living person, this includes your right to assistance should you choose to end your life and not be capable of doing so without help.

      religious people - I will bedevil you at every turn for your foolishness and for believing in talking snakes (see genesis)

  3. In backing this case you are taking an even more radical position than Dignity in Dying (aka the Voluntary Euthanasia Society) and the Falconer Commission, whose arguments have been repeatedly rejected by parliament.

    Although I am a Christian the position I am taking on this case is shared by the Ministry of Justice, the British Medical Association, all the Royal Medical Colleges and all five leading disability rights groups in Britain.

    This is not solely a religious debate. And killing out of 'love' or 'respect' is very dangerous indeed. The law is as it is for good reason.

    There are limits to autonomy for reasons of public safety and hard cases like this one make bad law.

  4. I've just seen an interview with Tony Nicklinson and his wife on the ITV news. His wife made a very good point in talking about the severity of his stroke, "Twenty years ago, he would have died. Nature would have taken care of this situation." (not an exact quote but conveys the gist).

    There hasn't been much of a public debate about the ethical implications of the advances in modern medicine which can preserve life but cannot restore health. Medicine will, no doubt, continue to advance and produce more cases like those of Mr Nicklinson. Do you think there's ever a point at which an individual can justifiably say "the life that's now available to me is not worth living?" Fern Winter

  5. I have not seen sufficient details of the early course of Mr Nicklinson's illness to know whether or not he would have survived the early stages of his stroke 20 years ago but there have been people with his current degree of disability - with normal higher cerebral function but requiring full nursing care - for many many years. This is not new.

    It was not medicine which produced his disability but his stroke. Advances in medicine simply mean that some people who would have died following strokes many years ago now survive with serious disability, some who would have survived with serious disability then now survive with less serious disability and some with less serious disability then now survive with no disability. But there have always been disabled people requiring care.

    A person's assessment of their life, as pointed out above, depends much more on the person's perspective than the degree of disability.

  6. I don't think it is entirely accurate to say as you do "It was not medicine which produced his disability but his stroke". One can never be absolutely sure of course but I suspect that the balance of probabliities is that it was medical intervention that saved his life and resulted in him surviving in his present condition. A very similar thing has happened with battlefield medicine; the lives of very severely wounded soldiers are now preserved. These people, of course, are then required to live with much more serious disabilities that has previously been the case. I don't think the ethics of all of this have ever been subject to much public debate.

    I would imagine that the comments made by Mr Nicklinson's wife (Jane?) were not off the top of her head but as the result of conversations and reflections on those conversations with consultants and other medical experts over a quite long period of time.

    You write " a person's assessment of their life....depends much more on the person's perspective than the degree of diability." You seem to be willing to accept that perspective when the disabled person is upbeat about their condition but not when they find their situation intolerable. I'm genuinely interested in whether you think there exists any situation into which someone might be placed through illness or injury which is intolerable for them. Fern Winter

  7. >> Let us not forget that murder is quite a rare thing in the UK

    Not counting the millions killed by "termination" of pregnancy, of course?

    You are an idiot, newsengland. I thank the good Lord that you are not a doctor. I would hate to fall into your clutches - or have either my wife or kids do so. Just because you say you are so altruistic that you would never hurt your wife except out of "love and respect" does not mean everyone else out there is similarly wonderful. Most people kill for money. Some may kill to rid themselves of the burden of caring for a person whom they do not love. You cannot be so deluded as to think that all carers love the people they are looking after - for goodness sake, a grown man being so naive. I cannot believe you're a neuroscientist. More likely you clean out rat cages in some neuroscientist's laboratory, eh?

    1. You call me and idiot and then naive - this coming from someone who believes in a sky buddy and a book that starts with a talking snake and who, until recently, didn't realise that there were two well recognised spellings of the word foetus.

      Termination of pregnancy is not murder. It may be so in your puerile little mind, but in reality it is no different to the removal of a cancer.

      As for my job? Keep guessing, but you can be sure it'll be way above your pay grade ;)

    2. Whereas a brainwashed sheep like yourself, James, would kill on the orders of a priest or a sufficiently convincing hallucination. You disgust me.

  8. No-one would deny that Mr. Nicklinson's condition is extremely hard to endure. It must be intolerable, indeed. But changing the law is something else again. The law is there to protect the weak and the vulnerable, not the strong. The weak do not have a voice, and no-one will even be aware when they are pressured into dying by unscrupulous or greedy relatives. People who have not come up against this kind of greed may be unaware that it exists widely in society. Unfortunately in my own line of work I see a lot of greedy and unscrupulous people who would sell their own mothers if it profited them to do so. And I have no doubt at all that a change in the law will help these sorts of individuals achieve their aims much quicker. There will be exceptions to this - but the law is there not for the exceptions, but for all the others.

    1. So his condition is, to use your own phrasing, 'intolerable' and yet people like you want to force him to tolerate that which is as you say 'intolerable'. You say the law is there to protect the weak, do you not think that an 'intolerable' condition would wear someone down and make them very weak?

      How about you look at the real problem here: there is a conflict between the bits of a very old book that you have been taught to live by and this real life case which is of lesser importance than that piece of fiction.

      Please remove your head from your backside and realise that we are talking about a living hell for some people - they don't care if there is a heaven or hell to go to, they just know that even nothingness is better than the crappy life they have.

      Sick people, like yourself and Peter (who writes this blog) would rather see people tortured by their disabilities or terminal conditions rather than actually help them.

      I don't care how many greedy and unscrupulous people you see on a day by day basis - the fact that you have allowed it to remove your humanity does not mean we should remove any hope of dignity for people like Mr Nicklinson, on the contrary, if we cannot help him or people like him to have happy and fulfilled lives then we should allow them to choose how and when to call an end to their life.

      To suggest that people should be tortured every day of their remaining lives is a viscous and nasty thing to force upon anyone and something which any right minded Christian would rally against.

      I wholeheartedly believe that people like yourselves are evil for preventing Mr Nicklinson and others like him from having the peace they so richly deserve. It is their lives and should be their choice, not yours or anyone elses.

      To continually hide behind things which haven't happened (murders) in defence of your position is infantile, you should be ashamed of yourselves. I doubt you are though as your 'good book' manages to act as a set of blinkers in any rational discussion.

    2. Just a quick curiosity - wondering why "Gay" Athiest felt the need to label himself/herself as such. Are we supposed to think more/less of him/her now that we "know"??
      Anyway, back to the topic that matters, I believe some people unfortunately make decisions based more on their emotional state and physical condition when it comes to this very controversial issue, whether they decide quickly or even take a lot of time. I don't think they consider the scope of their decision, how many more people might be seriously affected, even harmed because of it. This is so much bigger than Mr. Nicklinson & I am sorry he's suffering.
      Again, this is most definitely not a religious issue, but a moral one. God is the MOST UNRELIGIOUS person there is. Why is it that the Bible and God are always the ones the secular world chooses to rip to shreds and blame when these hotbed issues come to light and some people choose to make decisions, even though not necessarily, solely based on their faith. God created the world and us out of love and gave us simple rules to live by for the health of our communities. Christians are not inhuman or evil and don't like to see anyone suffer either but we realize who created us. As an aside, we are not immune to unbearable suffering either. We do know that the suffering, no matter how hard to endure, is nothing compared to the joys of living for eternity with Him.

  9. For newsengland - how ignorant and egotistical are you. Who do you think you are - and who cares how much money you have. Do you think you're so much smarter than the rest of us. GET OVER YOURSELF. You obviously have the compassion of the snake you talk about in God's word - not that you have any understanding of it. Abortion is MURDER in God's eyes - it matter not an iota what you believe. GROW UP

    1. Oh, boy. Another cowardly cretinous creationist Christian who hasn't even glanced at his or her own holy book.

      Watch as I disprove your point with your own bible:

      Abortion is not murder. A fetus is not considered a human life.

      If men strive, and hurt a woman with child, so that her fruit depart from her, and yet no mischief follow: he shall be surely punished, according as the woman's husband will lay upon him; and he shall pay as the judges determine. And if any mischief follow, then thou shalt give life for life. -- Exodus 21:22-23

      The Bible places no value on fetuses or infants less than one month old.

      And if it be from a month old even unto five years old, then thy estimation shall be of the male five shekels of silver, and for the female thy estimation shall be three shekels of silver. -- Leviticus 27:6

      Fetuses and infants less than one month old are not considered persons.

      Number the children of Levi after the house of their fathers, by their families: every male from a month old and upward shalt thou number them. And Moses numbered them according to the word of the LORD. -- Numbers 3:15-16

  10. There hasn't been much of a public debate about the ethical implications of the advances in modern medicine which can preserve life but cannot restore health. Medicine will, no doubt, continue to advance and produce more cases like those of Mr Nicklinson. Do you think there's ever a point at which an individual can justifiably say "the life that's now available to me is not worth living..!!


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