dignity in dying

I attended the AGM of Dignity in Dying today – an extremely well attended meeting (I estimated that there were about 200 present).
The focus of the meeting was the forthcoming second reading in the House of Lords of Lord Falconer’s bill on assisted dying. The bill is clear and concise, and if passed will enable any adult who is mentally competent, and has a terminal illness with a prognosis of less than six months, to request assistance in bringing about their own death. Two independent doctors will be required to confirm that the criteria are satisfied, and the dying person must be able to initiate the final act.
The current evidence suggests that 80% of the UK population are in favour of the bill, but the majority of the medical royal colleges, and the British Medical Association all oppose it. When asked about the reasons for this Dr Liza McDonald (a retired oncologist and board member of DiD) thought that the opposition stemmed from medical paternalism and the fact that doctors see death as a failure, combined with increased fear of litigation. She also felt that many doctors, whether or not they had a personal religious faith, shared with many members of faith groups a moral opposition to assisted dying. Speaking from my own experience as a doctor I think that she is probably correct. Certainly the gentle easing into peaceful sleep that I witnessed (and assisted with myself) 30 years ago no longer occurs because of fear that a pro life nurse will report such action. This is ironic, because the current law allows administration of increasing doses of painkillers given with the intention of relieving suffering, accepting that such action may shorten life. It is also ironic that this ‘doctrine of double effect’ action is far less regulated than assisted dying would be, yet opponents of the bill regularly cite risk to vulnerable people as one of the reasons for opposition.
One of the questions from the floor concerned accuracy of prognosis – could we be certain that six months was not, in fact, twelve months? I think this is a red herring. We are notoriously bad at precise prognosis, but surely we should assume that a person requesting provision for assisted dying has either come to the end of active treatment, or has made a decision to refuse further treatment. Moreover, the figures from Dignitas suggest that only 14% of people given the ‘green light’ to end their lives at a time of their choosing actually go ahead and do so. It seems that knowing that they have regained control of their lives enables them to go on living, and subsequently to die naturally.
A very charismatic Canon of the Church of England (Rosie) spoke eloquently about her belief (a belief I wholeheartedly share) that a loving God would not want people to have prolonged and anguished deaths when we have the means to end life peacefully and with dignity. Personally I believe that however we conceive God, any deity, ultimate truth, ultimate goodness, could only want humankind to exhibit its potential beauty and goodness, and that pain, needless suffering, ugliness and lack of compassion show the worst aspects of our humanity.
As with many other controversial issues (e.g. abortion, gay marriage) I am always amazed by the desire of fundamentalists to impose their moral or religious beliefs on those of different persuasion. If I want to choose assisted dying before I become totally dependent with my motor neurone disease; if I wish to have an abortion because I am a medical student who has fought hard for my university place and am in no position to bring up a child; if I wish to marry my lesbian lover, surely that is my choice? I am not imposing that choice on another who does not share my beliefs or moral code. I am not in any way reducing the choices of others. However, those who oppose all these things (and very often all three go together) wish to remove my choice.
This brings me back to the position of doctors. One of the arguments often advanced is that we occupy a unique position of trust with our patients, and that this will be destroyed if we are seen to be deliverers of death. I find this view paternalistic and arrogant. I want my doctors to treat me as an equal in making decisions about me, and I hope that is how I always behaved with my patients. A current slogan in mental health is ‘no decision about me without me’. Patients in the 21st century read about their illnesses on the internet (and unfortunately sometimes the Daily Mail). They ask questions and are hopefully not rebuffed. Unfortunately many doctors are less than comfortable talking about death, and either consciously or unconsciously discourage and meaningful conversation with their patients. I know from personal experience that many senior doctors will deal with the issue by ‘arranging for someone to chat to you.’ The chat may or may not happen, is likely to be limited to immediate medical matters, and the patient may never see the ‘chatter’ again.
Palliative care doctors are seemingly almost unanimously opposed to assisted dying. I can only think that they take a request for assisted dying as a personal insult. Of course the appointment of many more palliative care doctors would help to alleviate the physical symptoms of many more patients, but firstly that expansion of numbers isn’t going to happen, and secondly simple symptom relief is not the only thing that stops people wanting to die. The majority of those who would like the option of assisted dying available fear loss of autonomy more than anything else, and I can completely understand this. I have experienced loss of control over my life, thankfully for relatively short periods of time. Losing autonomy is dehumanising – after all, it is personal autonomy and free will that makes us human.
Sadly the second reading of the Bill in the House of Lords is scheduled for a Friday in July, when many of the Lords will be absent from the House.
I can only hope that the campaign by Dignity in Dying is successful, as figures suggest that the majority of the Lords are in favour of the Bill – they just need to turn up and vote.

3 June 2014

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