Friday, 4 February 2011

Assisted Dying.

Last night, Debbie Purdy spoke at the Legal, Medical, Clerical dinner in Harrogate. Debbie suffers from MS and campaigns for freedom from prosecution for relatives who help a loved one, at their request, to an assisted suicide. 92 people in Britain have helped a relative travel abroad to die and some have been charged on their return though as yet none have been prosecuted. Debbie views this as a matter of life and is, herself, full of life, asserting that she can only live her life fully if she knows that, should her pain become unbearble, she can ask for help to end her life and know that her husband will not be prosecuted or end up serving a prison sentence. She feels that, without this assurance, she would have to end her life before she wants to in order to be able to take it without physical assistance from her husband who may then be prosecuted. Most of us cannot even begin to imagine being in this position. Everyone who heard her speak was, I think, both struck by her wonderful liveliness and zest for living and moved by the poignancy of her plight. In 2009 Debbie took her case to the law lords and it was refered for appeal. The result? That the Director of Public Prosecutions was required to publish the facts and the circumstances that would be taken into account in the decision whether or not to prosecute someone for assisting a person in an act of suicide. As the law stands, anyone who is found guilty of 'aiding, abetting, counselling or procuring' the suicide of another can be sentenced to up to 14 years in prison.

Debbie's argument is that, because the suicide rate is relatively high among those with progressive debilitating diseases, more lives would be saved by removing prosecution for, particularly, counselling in connection with suicide. She claims that at present doctors, health care professionals and clergy are too constrained by the law and many will not even talk to patients about suicide. She believes therefore that people end their own lives who could in fact be reached and helped by counselling and an honest discussion about suicide. She pianted a vivid picture of the silence that meets those in great pain and fear about their desire to do something to relieve the intolerable situation they find themselves in.

There was an interesting discussion after her talk. This is an ethical dilemma which is truly beyond human wisdom to fathom. It is seemingly impossible to find a law that both protects from intolerable pain and protects from exploitation and abuse of the vulnerable. It is also very difficult to know when an individual has reached an irrevocable decision - there are huge risks of minds being changed and mistakes being made about someone's intentions. Even when there is something like a living will, it is often far from clear when a person has reached the point at which it should be enacted.

Like Debbie, like all of us, I am influenced by my own experience. I nursed for 9 years and I remember patients who clearly wanted to end their lives and who told relatives and staff that they could no longer bear the pain they were in on a daily basis for weeks and months. I know that in a few cases medicine does not have the capacity to control pain. I have suffered from a very painful condition (endometriosis) myself which can temporarily reduce you to feeling that you would do absolutely anything to escape the pain. But I also remember people who begged not to be rescusitated or who said they wanted to die and clearly meant it, only to move to another point in their disease where they fervently thanked God (or the medical staff) that they had not died. I have seen that people with chronic progressive disease, people with accute (very severe but not permanent) disease and frail and very ill elderly people have different vulnerabilities and need different kinds of help, care and protection. And who is to make judgements in all these cases? It seems to me that wherever the law comes down on the spectrum of preserving life at all costs or allowing or assisting death, mistakes will be made. We will not get it right in every case. Medics already have a variety of approaches to the impossibly difficult delineations  between not preserving life and allowing or assisting death. 
What I found very insightful in Debbie's talk was her insistance that doctors, nurses, counsellors, lawyers and clergy must be able to have honest conversations with patients about intolerable pain and other symptoms, about what suicide would involve and about how their disease will progress. There must be freedom to explore whatever the person wants to explore without fear of being reported and prosecuted. Some doctors seem to do this anyway. Others avoid the difficult area of what suicide would mean and the dreaded area of 'too much pain' because of where it might lead. Yet Debbie pointed out that being able to talk about these things was sometimes precisely what enabled people to want to live rather than die. I also agreed with Debbie that clarity in law about what is and what isn't going to lead to prosecution for relatives is important.

However, I think that the law has to maintain the utmost vigilance and there has to be the possibility of prosecution for any kind of coercion towards suicide. I also do not want to see the law changed in any way that requires medical staff to assist death directly; the notion that a doctor or nurse might under certain (even very controlled) circumstances deliberately end life changes the entire patient/medic relationship. It puts health care professionals in the position of making impossible judgements and puts patients in the position of not being able to trust the motives of those who should unconditionally be caring for them. Palliative care and more research into how to avoid prolonging life when this is not wanted seem to me to offer a way forward. However, even as I write this, I can think of patients I have nursed whose conditions and whose suffering make me question what I write. 

I come down in my own judgement in a place where the law errs on the side of stringent protection of life but is exercised in a way that allows for the greatest possible compassion and leniency for those who have been caught up in these terribly difficult places. There must also be extensive training and support for professionals who find themselves having to accompany patients on these kinds of journeys.Twenty five years after leaving nursing, I still have the names and fates of patients etched on my memory because they didn't have a good or easy ending no matter what we tried. Patients, relatives and staff have to be able to talk honestly to someone and even say, 'Perhaps we made a mistake, perhaps we didn't get it right, perhaps you didn't get it right for me,' and to know that there is humane understanding and forgiveness for the extreme places they find themselves in from time to time. 

A very sobering topic and not easy to know how to write about (or even whether to write). But Debbie communicated a love of life and her whole demeanour was that of someone living the gift of her life to the absolute fullest extent possible. And her message was, I think,  'please talk about it.' 

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