The Moral State We’re In. Julia Neuberger
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more to offer, seems very hard. Suicide may not always be wrong. But murder–even with the best of motives, and by request–is. The role of a doctor is to heal and to care, not to kill. Crossing that line is very difficult to justify. It asks doctors and other health professionals to go against everything they have trained for. However critical we may be of the tendency within our healthcare systems to preserve life in all circumstances, asking health professionals actively to seek the death of another human being is asking them to lose their respect for human life in a quite fundamental way.
Yet it appears that public opinion has gradually been moving towards favouring mercy killing. From the beginning of the 1990s, attitudes began to change in the Western world. According to polls carried out for the Boston Globe (November 1991 and onwards), 64 per cent favoured physician assisted suicide for those terminally ill patients who requested it. Of those under 35, 79 per cent were in favour. Question 119, the Washington initiative to legalize physician assisted death, was not in fact carried. But it raised questions about the role of doctors in keeping patients alive unnecessarily, and in an undignified way, as well as issues about whether it was a major conflict for physicians trained to preserve life to assist willingly and knowingly in procuring death. Yet the physician who assisted in the suicide of two women (painfully but not terminally ill), Dr Jack Kevorkian, who was arraigned on charges of murder but without specific charges being brought against him, had a preliminary ruling in his favour in Michigan in February 1992 and continued to ‘assist’ patients commit suicide thereafter. In the UK, we are beginning to see newspaper reports about people going to Switzerland to receive physician assisted suicide, because they cannot get it here. So the pressure is there. Many people want to be able to request euthanasia ‘when the time comes’.
Although there are considerable moral dangers in such a system, I believe that we will see limited euthanasia in Britain in the next decade unless a real moral debate takes place and those who are opposed to it argue hard against it. Even if this happens I believe that we will still see physicians being allowed to give terminally ill patients the wherewithal to commit suicide if they are convinced that this is what they want. The climate of opinion is changing. What we need to think about is to what extent this is because of people’s fear of growing old and helpless, their fear of the disintegration of self in old age, and society’s increasing unwillingness to accept that it has to pay for the care of the extremely frail and dependent.
Advance Directives
The arguments against the projected changes include, firstly, the view that asking doctors and nurses actively to kill patients is wrong and creates the wrong value system for a healthcare service of any kind. It may be the case that healthcare professionals do not need to strive to keep patients alive, but that is very different from actively killing their patients. Secondly, that suicide itself is not wrong and that an elderly or very frail person committing suicide is not necessarily to be disapproved of if it is done by their own hand rather than by another’s. Acceptance of this view should lead to a change of perception which might allow people to realize they can do it for themselves, and even be helped by being given the means in particular circumstances, without having to ask someone else actually to kill them. Thirdly, a rider to all this is the need for us as a society to develop a system of advance directives, whereby people can make choices for themselves about whether they want to be treated if extremely ill or when they can no longer make decisions for ourselves.
Such a system is in place in the USA. The PSDA (Patient Self Determination Act), a piece of federal legislation, came into force in December 1991. This requires all healthcare institutions, HMOs and services in receipt of federal funds to ask patients the question upon admission or enrolment about whether they have any kind of proxy or advance directive for what is to happen to them in the way of healthcare decisions if they become incompetent. At the same time, there is legislation in most US states that covers either healthcare proxies or advance directives, recognizing them in law and therefore in a sense approving their use.
There has been, rightly, increasing pressure to have a universal system of advance directives in the UK. The UK government has finally signalled, after a ten-year campaign, that there will be legislation to enforce so-called living wills via the draft Mental Capacity Bill, published in June 2004. This would apply both to those nearing their deaths, such as those who are frail and elderly, and to those who are or might become incapable for other reasons, such as those with enduring mental health problems, so that they can consent in advance to the treatments they might choose to have, or decide not to have, if they were well enough to make a decision. Some of the American evidence suggests that two separate factors are at work here. The first is a genuine desire to see self-determination for the very old. People must take responsibility for themselves, and must be encouraged do so before incapacity sets in. The other factor, which is certainly echoed in the UK debates, is the vast cost of paying for healthcare of the very old. The general view is that everything that can be done for a patient must be done, and there is a corresponding fear of being sued if any stone is left unturned, or any intervention left untried. If people could be persuaded to use advance directives, or appoint agents, there might be less use of expensive resources by the very old and very sick.
The fear of litigation in the USA is real and is growing in the UK. Though actual litigation is less common than the fear of it might suggest, it does have a powerful effect on behaviour. In the USA it is that pressure that has led to an increasingly strong argument for individual patients to have their own advance directives. State statutes on treatment directives give physicians a guarantee of civil and criminal immunity if they withhold or withdraw life-sustaining treatment relying in good faith on a patient’s advance directive. So, the argument runs, encouraging the use of advance directives will lessen the chance of litigation, allow for real patient autonomy, and arguably save costs.
But, if we are to move to a system of advance directives, then, as a society, we have to think quite differently about our health and social care systems. For the first time, with the exception of palliative care and hospice services, we will have to give far greater thought to the question of suffering, for despite the success of the hospice movement, suffering is barely part of medical training in Britain. Public debate on these issues needs to be encouraged, and public standards established. The idea that patients could set out for themselves, perhaps on a standardised form, what they want to happen if they are too frail, or mentally incompetent, to make a decision, is an attractive one. It would take away from healthcare professionals the need always to make decisions ‘in the best interests’ of the person involved, since it is often hard to tell what those interests might be. And many people simply do not want, at the end of their days, someone striving officiously to keep them alive.
Yet the system is not yet established that would allow us, as standard practice, to make our views known to our GP or to the person acting on our behalf in the healthcare setting. It is remarkably good practice at present if GPs and healthcare professionals ask us our views and make a note of them for future use. A system of advance directives seems sensible, practical, and easy to organize once a decision has been reached about what questions should be asked. The courts already recognize living wills, but the new mental capacity legislation will enshrine the right to draw one up in law and make it possible to appoint a healthcare proxy, in exactly the same way appointing someone to look after one’s financial affairs. As well as enshrining the right to make a living will in law, the Bill creates a new criminal offence of neglect or ill treatment of a person who lacks mental capacity, but it met criticism early on from the Making Decisions Alliance, a grouping of charities including Age Concern and the Alzheimer’s Society, who argued that the provisions lacked teeth and did not give advocates a central role in representing those affected by mental incapacity. In June 2004, the numbers affected were some 700,000 with dementia, some 145,000 with severe and profound learning disabilities, and some 120,000 suffering from the long-term effects of severe brain injury, quite apart from those with episodic severe mental illness.
At this point, it might be worth returning to the story of the donkey, the dog, the cat and the cock–all of whom had outlived their usefulness to their owners. Evidence is mounting of the rationing of healthcare by age in the United Kingdom. Is this because the elderly are seen as being too old to be productive? Or simply that they are felt to have had their turn and are taking