Tuesday, 4 May 2010

The End of Life Assistance (Scotland) Bill: Views from the trenches.Part 1.

We are very fortunate to be able to publish an article that Dr Stephen Hutchison MD FRCP(Glasg, Consultant Physician in Palliative Medicine at the Highland Hospice has written on the End of Life Assistance (Scotland) Bill. The article will be posted in 4 parts to facilitate reading.

Some people because of actual or anticipated physical or existential suffering will wish to end their lives, and sometimes people with serious and incapacitating illnesses do not receive an adequate standard of care. However, it is justified to conclude from this that we need the facility of legalised assisted dying?

Most of us have strong opinions about this. We tend to adopt deeply entrenched positions, shouting from one side about suffering, choice, autonomy and rights, and replying from the other with a sort of “Thus saith the Lord: Thou shalt not kill, and nothing more need be said” approach. Maybe it is difficult to find a middle ground here, and I suppose I am in my trench too, but it is important to appreciate the view from the other trench, so that this complex issue gets more than the knee-jerk response we usually hear. We need to avoid knee jerk responses ourselves – it isn’t just others who are guilty of that.

Most of us hope to avoid severe suffering, and in that event, the option for life to be ended humanely has appeal. Many doctors, including me, facing terminal care situations where treatment is not providing sufficient relief will have been attracted by the idea of being able to gently end life and bringing release. Sometimes the distress of life’s circumstances is beyond anything that a doctor can address. One of the fundamental things about being human is that we have choice. Choice, autonomy and dignity are buzz words nowadays. When presented on the one hand with unbearable pain, loss of control of bodily functions or dependence on others for basic care, and on the other hand to have the option for our lives ended with dignity, the choice seems obvious. How could anyone think that option was wrong? And can we not devise safe legislation to enable the inclusion of this ultimate act of compassion into medical care? These are difficult questions. Glib answers don’t convey much love and compassion, and the sort of right wing intolerant so-called Christian responses I sometimes hear on radio phone-ins are particularly irritating. For goodness sake let us recognise the real challenges around this issue, and Christians in particular should be avoiding un-Christ-like hard hearted responses.
We need to approach this issue compassionately, but also intelligently. One of the problems with public opinion is that people have not been well informed about what exactly such legislation would mean for patient care, and for society generally. The report of the House of Lords Select Committee, set up to comment on Lord Joffe’s recent attempts to introduce assisted dying, contains an extensive section about public opinion. It concludes that the issue of assisted dying is extremely complex, and that the real views of the public are obscured by inadequate information and appreciation of the implications of such law, for themselves and for society. Current public opinion, whilst generally in favour of assisted dying, is largely superficial and does not have sufficient rigour or quality to guide legislative change.

The policy Memorandum accompanying Margo MacDonald’s Bill mentions several distressing instances of suffering. They certainly should distress us. However, it is a matter of fact that people usually think they would like assisted dying to be available just in case they get severe pain, or other symptoms, in a terminal illness, rather than the actual experience of these. In other words it is fear of pain rather than actual pain which underlies the request. People experiencing terminal illness have a similar spread of opinion as the wider public. Of those who do express the wish for their lives to be ended, many have depression. Anecdotally, others change their minds once they have received good palliative care. So when I read about pain, distress and suffering in the Policy Memorandum, I wish I had more information about the level of care these patients received, and if it wasn’t good enough, I want to know why – because in the UK we have a magnificent standard of palliative care and that should have been available. We also need to be a bit careful about the assertions in the documentation that assisted dying goes on under cover anyway and it would be better to legalise and regulate it, and also that is compatible with palliative care. There is good evidence that doctors in the UK rarely engage in such practices, and if we look at the definitions of palliative care as well as the experience of palliative care practice in societies where assisted dying is legal, the claim that the two are compatible becomes less than convincing. The debate on assisted dying will inevitably be passionate, on both sides, but we need to be careful how we interpret evocative anecdotes about suffering, and not take everything at face value. We need to subject the information we are fed to careful scrutiny if we want to develop an intelligent opinion about this.

Margo MacDonald’s Bill declares its purpose as the “provision or administration of appropriate means to enable a person to die with dignity and a minimum of distress”. The wording sounds wholesome, and implies that the Bill makes provision for this. But provision for that is already made in health care, and palliative care in particular is directed to precisely these objectives. Opponents often say that we should call a spade a spade – this is killing and we should use that word. That may be true but it sort of implies a callous or murderous attitude, and whilst one of the undoubted dangers of such legislation is the potential for malicious motivation, compassion for the requesting person is likely to be the predominant influence. Maybe it would be more honest, to describe the purpose of the Bill as the legalisation of intentional ending of life.

.... Continued on next posting.


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