DYING TO LIVE – OR LIVING TO DIE?

Following on from yesterday’s sad story about Tony Nicklinson, my mind went back to the story of Michael Wenham, who has motor neurone disease. but whose attitude is the opposite of Nicklinson’s despair.

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Michael  queried in an article recently the understanding of ‘dignity’ in the media. He says “‘Dignity’ itself is another word which is in danger of being hijacked. Why is taking a lethal dose more dignified than bravely, perhaps painfully, putting up with a disability or a terminal disease until the end? Is there less intrinsic dignity in being dependent than being in control? If so, it has dire implications for how we regard many of our fellow humans – as dignity has at its root the concept of worth.”

His experience has taught him some unexpected lessons, he says.

  • Life is a gift, not a ‘right’.
  • There’s a freedom over not having control. He’s letting go of ‘choice’ (another unexamined buzz word, in my opinion) and starting to welcome ‘chance’.
  • He is discovering, he says, that an increasingly limited life can paradoxically be an increasingly rich one. And he concludes:

“I suspect that our society’s insistence on rights and on personal autonomy, of which the campaign for assisted suicide is a symptom, is progressively impoverishing all our lives, as well as endangering some. I believe we need to beware and to speak up.”

Well, he should know.

His book about his experience of MND is called ‘My Donkeybody – Living with a body that no longer obeys you’. (Monarch Books, with an introduction by Canon Andrew White, the ‘Vicar of Baghdad’, who has MS)

Michael also has a website http://mydonkeybody.blogspot.co.uk/ He writes about his meeting with Tony last year.  He pointed out to Tony that he had a legal right to refuse treatment, simply to have palliative care, and that would have enabled his death.  Tony refused this option.

Do those of us who do not have to live with major disabilities have the right to decide the fate, or otherwise, of those people who do?  And looking at the wider context, what do the Paralympics have to say to this discussion?

40 thoughts on “DYING TO LIVE – OR LIVING TO DIE?

  1. everyday throughout our lives we have to make choice. Our society is built on the principle of free choice with personal responsibility. Tony Nicklinson chose to die. This gentleman David chooses to live. He may say he is leaving his life to chance, and removing choice, but that is also a choice he has made – to see where life takes him and to try and make the best of it.
    They are both entitled to make these choices while they are of sound mind, and yet so many people condemn Tony’s choice, while praising Davids.
    Anonymous is right regarding abortion. Women choose to end the life of a foetus, and although many may not agree with the choice she makes, it is allowed under the law. We choose to end the life of an unborn child, or a suffering animal, yet are not legally permitted to make the choice of when we ourselves die. The law is inconsistent.
    Holland and Belgium allow doctors to assist a patient to die, Switzerland permits assisted suicide. I have lived in Switzerland, there was never a case in the media of people being helped to die who did not want to die. I think in the Benelux with all their controls, there have been no cases in the press there either.
    I do believe in God, but I also know that God gave us free will. Therefore we should be allowed to practice that free will following our own conscious on this issue.

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  2. Interesting comments, thanks. Where is it that you live?

    Re. your last para: this seems to me to be describing palliative care.

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  3. I think when you are loved you should bare the burdon for there sakes. There is a proffessor who also suffers the same disease as the chap who as just died and he teaches in colledges and speaks with electronic computorised thing(locked in syndrom)he doesnt seem to want to die he as a busy life. xx

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    1. I think you mean Stephen Hawking – he certainly is an inspiration even if one doesn’t always agree with his views.

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  4. All of us should be aware of the fact that mind controls matter ie the body we are Blessed with which may due to some disorder be reduced to a state like that Professor Hawkins. He has ably withstood the onslaughts of the disease he is suffering from It has not let his spirits down. I have a friend of mine who is more or less in a similar condition from the neck downwards. The illness took hold of him gradually from the age of 14. He is now 60. He has to be tended on hand and foot but his mind is very sharp and incisive. He has to fed, clothed etc etc and is just about able to move the tips of his fingers. All the same he has become a computer wizard and he is able to earn his daily bread simply by getting to work on his computer. He is always cheerful with a smile on his face. ONE HAS TO ADMIRE HIS COURAGE AND FORTITUDE IN THE MIDST OF HIS ACUTE AND INCURABLE PHYSICAL DISABILITY.

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    1. Indeed, Frank. Such people are inspirational, as are the disabled athletes preparing for the Paralympics.

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  5. Appreciates the gift of life – a real brave man too.

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    1. Hugely courageous, and inspirational.

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  6. Thanks for this post gilly, what an amazing man, I will definitely look at his website and might even get his book, Fascinating and an amazing attitude. It was very sad about Tony Nicklinson though. xx

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    1. It is heartbreaking about Tony. So glad you like the links to Michael Wenham. He is inspirational. Hope you find it useful.

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  7. Tony had in mind a cause to follow; my guess is, it kept him living a good deal longer than he would have chosen to otherwise. He hoped for a particular outcome in his case, but as he said, he had not accounted for the human [judgemental] emotional element in viewing his request. It is notable in this respect that his wife described Tony as having had the fight taken out of him with the rejection of his personal request.

    It is all very well for someone, whatever their physical state (very different from Tony’s) to say he could have had the alternative of palliative care. For Tony, for reasons clear to his family and himself, it was not an option. I can understand why. No-one, no organisation, could have bettered his wife’s understanding of Tony’s mind, his extraordinarily limited communication, nor his care. In that environment he was as ‘comfortable’ and he was ever going to be. All I can say is, I had a lot of sympathy for what he wanted to do.

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    1. That’s a strong and sympathetic response. Would you then take the next step, of wishing to see assisted suicide legalised?

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  8. I can see a point where I would not wish to live any longer…If you can’t speak it must be very hard.

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    1. I can’t imagine how awful it would be.

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      1. I think we can adapt to many disabilities but also we’d need people to help us…and some don’t have…If all you can do is lie frozen…but my father lived about two years longer than expected because,I believe,he was happy just to see his children…he died on the Sunday night at the end of the summer holiday….when we would not be home and my mum would be at work.And no TV etc..
        Unless we experience it,we cannot know…and we don’t tend to read books about it,I imagine.
        But for people not as bad as that life is much better nowadays with new technology.

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      2. Yes to your last point, that’s a very good comment. The down side, of course, is that modern technology keeps some people artificially alive for much longer than – well, than what? At what point is it OK to do this, and at what point should it be stopped? Sometimes the answer is much more obvious. Sometimes it’s not obvious at all, and we can so easily make the wrong decision because we don’t have sufficient information. The ethical questions begin because of much modern scientific and medical development. The old answers are too leaky and inadequate now.

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      3. Yes,I see that… and have read letters in the Guardian on this issue..and in the USA it seems worse…surely an answer can be found as it’s frightening to contemplate.

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      4. I don’t consider that it’s possible to make a hard-line law. I suspect that ethically, it’s only possible to offer guidelines. There has to be some room for individual cases, but unless this is strongly guided it is open to major misinterpretation.

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  9. It is so easy to be ‘wise’ on matters such as this.

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    1. Yes indeed, who are we, the able-bodied, to be ‘wise’ on such matters? And yet there is a major principle involved, concerning the way society should consider these matters, so I need to think it all through, trying to see as many points of view as possible, before making up my mind.

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      1. I appreciate the problem there are answers I am sure but the solutions may be transcient there will be a correct solution somewhere hiding in all the points of view.We each have to deal with these problems in our own way.

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      2. We do, but then how do we come to a common mind as a society?

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      3. We do not need a common mind I doubt whether there is a common mind unless we mean compromise which is rarely correct.

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      4. Surely, if life is protected by law, we need some sort of a common mind so that the population in general is content with that law.

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      5. Populations are complicit rarely content.

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      6. Well yes, but a law that does not seem right to the majority is a law that is likely to be disobeyed.

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  10. What a wonderful man. His courage is astonishing. xxxxx

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    1. He’s a real inspiration!

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  11. Much as we should respect people like ‘Michael’…and others like him…..we should respect people like Tony Nicklinson…and many others like him….:)

    I like the second lesson quoted above:
    “There’s a freedom over not having control. He’s letting go of ‘choice’…… and starting to welcome ‘chance’.”…as long as ALL of us apply it to ourselves…including doctors and politicians…;)

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    1. I agree – I wanted to put both points of view. We so often hear only the negative side.

      And of course we will never reach that point where we all apply that lesson of chance rather than choice … bound to have loads of arguments over what constitutes chance and what, choice :lalala:

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  12. Its very sad that the poor man took his life but for him it was no life and yet others have different views I agree with David’s view of Professor Hawkins who has got on with his life however limited to do what he loves and knows best but on principle I agree with the government’s view on this subject …

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    1. We have various friends who patiently love and care for a severely disabled spouse. Who am I that I should up and tell them that it’s not worth it? We should ask them :yes:

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  13. Professor Steven Hawking is worth thinking about in relation to any discussion of abortion or disability ! David

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    1. He is a rare case.. but I agree

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