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Editorials Christmas 2011: Editorial

Death can be our friend

BMJ 2011; 343 doi: https://doi.org/10.1136/bmj.d8008 (Published 21 December 2011) Cite this as: BMJ 2011;343:d8008

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Re: Death can be our friend

Thank you for this superb editorial in the recent BMJ with which I agree whole-heartedly. However, to my mind it's not enough just to reconsider the way we think of and deal with death. I think we also need to change the way we allow people to deal with their own death and with this in mind I think the issues you raise go hand in hand with my desire to see the acceptance of physician-asssited suicide in the UK (or at least here in Scotland where I live and work).
When I was with my mother when she died in 1998 from metastatic carcinoma of unknown origin aged 61 I began to wonder about this issue. When I lost my wife to cholangiocarcinoma in 2005 aged 41 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 perceive as a degree of hypocrisy in our cultural and political attitudes 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.
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 could act with care, kindness, compassion and humanity without the threat of losing my livelihood and going to prison. Fortunately I was never asked to make that choice. But I feel I would have done anything for my wife...
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, the faecal incontinence 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 my 3 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 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 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 was being proposed for the recent Scottish End of Life Bill.
So if you can have autonomy and chose to end your life by refusing treatment 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 their most fundamental human right - autonomy? Why do we allow them fewer rights than a pet dog?
I am not some kind of evangelist or fundamentalist who thinks "I am right and everyone else is wrong". I love living in a democracy where speech is free and we are mature enough to have different views over sensitive subjects without blowing each other up because of those differences.
I think everyone involved in this debate needs to move away from and, ideally, avoid using anecdotes. We can all quote distressing individual cases that help support our view but I am not convinced that helps lead to constructive debate. Rather, I fear, it entrenches things.
All too often the discussions around physician-assisted suicide are often lumped in with issues such as the rights of the disabled and capital punishment but this is not helpful either.
I disagree that the concept of a competent individual wishing to chose the timing and circumstances of their death in a terminal situation is linked to saying that a disabled life is not worth living. I find the former position completely understandable whilst the latter view is abhorrent to me.
As for capital punishment, the real issue there is that it is anti-justice and all about retribution. The mark of any good legal system is that any punishment can be reveresed or pardoned if the conviction is subsequently found to be unsafe. Capital punishment by definition precludes such reversal and is therefore wrong.
I have to emphasise again that I am in favour of some kind of change in the law as I do not find the current situation acceptable or desirable - for me the staus quo is not an option. Although the numbers may be small the current legislation does, in my view, cause some people unnecessary distress and suffering and I find that inhumane.
When it comes to the professional organisations - the BMA and the RCGP - I am a member of the Scottish Council of both these organisations but I do not agree with their current stances opposing a change in legislation and I have made my case at Council meetings (but I accept their current democratic decision).
In my ideal world physician assisted suicide would be a rare event. Indeed, some of the evidence suggests that when such an option is legally available people are less likely to avail themselves of it. In other words, because they have the safety net of that option they tend to persevere longer with other options. I know this is controversial but I can see the logic in it.
I was at a talk about 18 months ago where the speaker, who was opposed to any change in the law, basically said there was no place for autonomy in this discussion. I disagree with that quite profoundly. I do not think autonomy is the be all and end all of course. Sometimes we over-rule individual autonomy for the sake of a greater public health good - we have compulsory seat belts or we have bans on smoking in public places for example.
But not all autonomy is the same. When it comes to end of life decisions where a person of sound mind has made a decision to end their life and that decision is supported by the other people directly affected by the decision - family and friends - then, in those circumstances, I do believe autonomy trumps all.
I am sorry to sound like a stuck record but I am clear in my own mind that if I have a terminal condition and I am suffering intolerably either physically or emotionally I should be free to end my life at a time and place of my choosing with the people I love around me should they wish to be so. And I think that a civilised society should be prepared to supply me with the means and mechanisms to do so.
So I want physician-assisted suicide to be allowed in very strict circumstances. As I said before, for example, if the person themselves is incapable of carrying out the final act then that would automatically disqualify them form PAS. In the end of the day no doctor would be forced to participate which would immediately put quite marked limitations on the availability of PAS.
But if truth be told I think we are unlikely to see the kind of changes I hope for. Ultimately there are justified views on both sides of the debate and I am prepared to accept the democratic decision. If the law stays the same I will continue to argue for a change. If the law changes I will accept that there may be a possibility that such changes could be reversed at any stage in the future.

Competing interests: No competing interests

10 January 2012
stephen mccabe