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End of life choices
I am writing this as a separate blog because the post I wanted to make in response to tnolan's blog - Are our views about euthansia in a muddle - was too big to be allowed as a response post.
As some of you will know this has been an issue of hot debate here in Scotland over the last 12 months. A bill has been introduced to the Scottish Parliament and has recently been going through the committee stages. It's called the End of Life Choices (Scotland) Bill and it seeks to offer some legal protection around those who seek to end their lives actively if faced with a terminal condition. It was introduced by Margo MacDonald, MSP, who suffers from Parkinson's disease.
 Sadly at times the debate has become very polarised with some quite extraordinary claims being made, even from within the medical profession (such as the right to autonomy should somehow not matter so much when it comes to this issue). I think there has been an unduly heavy influence at times from those who wish to push their own religious or moral agendas. Sometimes there has also been the use of ill-judged and intemperate language such as "murder".
 Suffice to say I take a somewhat different (and, hopefully, more pragmatic) view.
 When I was with my mother when she died from metastatic carcinoma of unknown origin I began to wonder about this issue. When I lost my wife to cholangiocarcinoma my views started to solidify. It was clear to me that despite them both having the best possible palliative care, palliative care did not have all the answers.
 I have always been uneasy with what I perceived as a degree of hypocrisy in our cultural and political attitudes here in Scotland to this "thorny" issue.
 There are those who advocate not just physician-assisted suicide but out and out euthanasia. For me this is far more than just a subtle semantic difference and I cannot support the latter. PAS tries to protect autonomy; euthanasia removes it.
 Both my mother and my wife went through a traumatic terminal phase. If either had asked me to help end their distress I would have wanted to be in a position where I or a colleague could have acted with care, kindness, compassion and humanity without the threat of losing our livelihoods and going to prison. Fortunately I was never asked to make that choice.
 There are those that say the desire of some to end their own life reflects inadequate palliative care but to me this is just a smoke screen. Both my wife and mother had outstanding palliative care. But with my wife palliative care couldn't stop the hair loss and the intractable vomiting caused by her chemotherapy; it couldn't stop the bloatedness, facial swelling and debilitating muscle weakness caused by her steroids; it couldn't stop the personality changes caused by her brain radiotherapy; it couldn't stop her overwhelming loss of dignity which distressed her so much; and it couldn't stop her young children witnessing all of this. And all these things caused her great distress at the end of her life.
 Now I come to what I see as the hypocrisy of the whole debate. At present, of course, we actually DO allow people the right to die. But, as has been pointed out by tnolan, this is a passive choice in the form of refusing to have treatment. That right to refuse, even in the face of overwhelming evidence that refusal will result in death, is protected in law and also regarded as unchallengeable by doctors, politicians and society as a whole (taking into account all the safe guards around mental health issues). We demand far fewer hurdles or safeguards for that decision than were being proposed for the Scottish End of Life Bill.
 So if you can have autonomy and chose to end your life by refusing treatment knowing that that will kill you why can't you chose to end your life in an active way? If someone has reached the end of the road of toleration when suffering a terminal disease why are we so averse to giving them the means to end their own life peacefully, painlessly and in a planned time and place of their choosing with their family, friends and loved ones around them? Why at their greatest time of need do we deny them that most fundamental of human rights - autonomy?
 I only hope that if I am ever in that position we will live in a society which has become sufficiently grown-up, humane and kind to allow me the right to choose because, although it's a cliche, that is what it all boils down to in the end. 
 
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Bryony Tyrell wrote:
I am so sorry for your loss. I am fortunate enough not to have experienced this first hand but I have witnessed others in a similar position and I empathise with you emensely. I too believe that autonomy in death is a fundamental human right and the hypocrasy and ignorance that surrounds this issue is ridiculous. I recently challenged the British Medical Association concerning this issue and while I agree that safeguards should be put in place to protect the vulnerable none of their policies seem to protect those people for which palliative care is not sufficient. They responded by saying that it was a legal issue but as I see it they must have a huge influence over any legal decisions that are made regarding the issue. I too hope and believe that in time the laws will be changed.
16/11/2010 4:02 PM GMT on bmj.com
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luisad wrote:
I will be honest and say that physician assisted suicide makes me uncomfortable. But when I talked to Dr Ann McPherson who has written about this in the BMJ, and I read skysteve's moving blog I can see it is a human right and if offered only to people who are terminally ill and of sound mind then this would safeguard other's human rights. The best palliative care in the world (and I have seen some excellent egs) can't as Skysteve says, stop you losing your dignity.
17/11/2010 2:01 PM GMT on bmj.com
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sken wrote:
What precipitated my joining Dignity in Dying (it was then VES) was my growing awareness that there are quite a few doctors - and many more lay folk - who not only object to any form of assisted dying but also to the withdrawal / withholding of potentially life prolonging treatment. In general this does not involve hospice doctors - in part because their patients have a preponderance of cancer with a clearer endpoint. Whilst the assisted dying (AD) debate is in the limelight , this viewpoint is in the background , but shows itself in many of the arguments produced in opposition to AD. After all it is only logical to see that if someone is seen to be under external pressure to request AD , then the same argument applies to refusal of life prolonging therapy and they should be denied the right of refusal. It goes further than that : some may remember that when MIS B was refusing ventilation that the hospital staff refused to comply with her refusal , but in addition some of those professing to speak for the vulnerable felt she should be forced to continue with being ventilated because she was disabled and this would give Society a chance to show how much we value the disabled. Of course there are some good arguments - not all of them religious - against AD and the failure of the 2 sides to engage in constructive debate has always disappointed me . All too often we have hardcore autonomy on one side and intractable religious belief on the other . The weight of evidence currently seems to favour a change in the law , but perhaps a general drift in common law could achieve a similar outcome.
21/11/2010 5:19 PM GMT on bmj.com
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skyesteve wrote:
Update - 30/11/10 - the Bill was put to a vote in the Scottish Parliament and it was defeated
3/12/2010 12:09 PM GMT on bmj.com