Comfort in Sadness?

Onora O’Neill’s views on assisted dying are well known to me and her conclusions do not surprise me. Her main contention in the article is that a change in legislation on assisted dying would affect very few people. The quality of end of life care in the UK is very variable, in some places poor, and she suggests that it is inappropriate that so much attention is given to assisted dying when there are far more important matters that need remedy.

It is true that assisted dying gets a great deal of attention in the House of Lords, but that is because legislation on the subject has been tabled. As far as I know there is no such legislation pending relating to improving the quality of end of life care. In contrast, in terms of media coverage, I doubt if assisted dying gets a fraction of the interest that poor end of life care generates. Both the Liverpool Care Pathway and the Mid-Staffs scandal have been subject to much political and public debate.

The fact that a change in legislation on assisted dying would only affect about 1-2% of dying people in the UK (about 1,200 people a year) seems to me a poor argument in favour of dismissing it as of little importance. When I was Dean of the Institute of Child Health, London, research into the treatment of acute lymphoblastic leukaemia (ALL), a rare condition, was a major focus and is now much more treatable. No one said it was a waste of time to investigate it because deaths from malnutrition and infection in the developing world were hundreds of thousands of times more frequent. The fact that a condition or a problem is of low prevalence is a very poor reason for ignoring it if it is serious and potentially remediable.

I concur wholeheartedly with O’Neill when she writes that the variability of end of life care expressed in the Department of Health survey Voices is extremely disquieting. Indeed, given these views, one has to consider with some scepticism the government’s view, quoted by O’Neill that 'Britain is a world leader in palliative care'.

The view is largely based on the Economist Intelligence Unit international survey, which placed the UK top in terms of quality of end of life care. Judgements were made on factors such as level of expenditure, numbers of professionals involved and from interviews with a range of ‘experts’; but a careful reading reveals that not a single view of a dying patient or a carer of a dying patient was taken into account in making this evaluation.  My impression is that end of life care is at least as good in many other places, including Holland, not because of their assisted dying and euthanasia policy - though that is not irrelevant - but because there is much more open communication between health professionals, patients and carers on death and dying.

O’Neill says she is opposed to legislation on assisted dying because of the risk of coercion by greedy relatives. I believe that the proposed Falconer legislation includes built-in safeguards to prevent this happening. It will be the responsibility not only of independent doctors but also of multi-disciplinary teams caring for dying patients to ensure this does not occur. In Oregon, where such legislation has been in place now for 14 years or so, no cases of coercion have been reported. Instead, some relatives have to be persuaded that if this is what the dying person really wishes, it is not helpful for them to be obstructive.

In her excellent 2002 Reith Lectures on Trust, O’Neill advocates more transparency in public life. That is just what we do not have now when doctors act covertly to end lives because they think this is in the best interests of their patients. The proposed legislation would make end of life care much more transparent, not unfortunately in all cases, but in those where the assisted dying process is invoked.

The proposed legislation to allow terminally ill, mentally competent people to have health professional assistance in the last six months of their lives raises complicated moral and practical issues. I strongly support the Falconer bill but let me acknowledge the matter is far from simple. For example, Baroness O’Neill did not raise the commonly expressed concern that dying patients might want to end their lives so as not to be a burden to their loved ones.

The Bill requires doctors to be satisfied that, before formally applying for an assisted death, a patient has a clear and settled intention to end their life, which has been reached on an informed basis, without coercion or duress, and having been informed of the palliative care available as well as other alternatives. Guidance accompanying the proposed legislation will be developed to ensure doctors fully explore patients’ motivations for seeking assisted dying Patients who want to end their lives merely because they wish to avoid being a burden need reassurance, not an assisted death.

The care of patients at the end of their lives poses unique challenges to the patients’ relatives and to health professionals, but, in the end, unless there are really good reasons to the contrary, the wishes of patients should surely, as at all other times, continue to take precedence.