The Moral State We’re In

In Britain, on the other hand, the bulk of nursing home care for older people is provided by the private sector and children may well see their parents’ nest egg, which they often regard as theirs by right, swallowed up in nursing home fees. Parents certainly have a strong desire to pass on their wealth and savings–and often the house they live in–to their children. The result is considerable anxiety about the lack of free provision and about the need to draw down on savings. Anyone who has capital of their own above £20,000 will be assessed as being able to pay the standard rate. In the case of a care home providing nursing care, this would be the fees less the contributions the NHS might make towards the cost of nursing care. Those whose capital is between £12, 250 and £20,000 will be expected to make some contribution from their capital on a sliding scale, until the capital goes down to £12,250. Pensions and provision for older people have become major political topics in Britain, as discussed below.*

Those in favour of euthanasia argue that it might be easier if older people, instead of costing the country so much, could simply ask to have themselves put quietly and painlessly to death before the money runs out. The argument is rarely spelled out that way. But remember the story of the dog, the cat, the donkey, and the cock at the beginning of this chapter. Their owners thought them useless and felt that it would be fine to finish them off. We are not the owners of our older people, but as a society we see them as a problem. Hence the political issue that has blown up over long-term care for older people, which the Labour government promised to sort out on coming to power in 1997. It soon realized that this was a truly difficult task because of the conflicting and complex moral and financial arguments. Are older people entitled to free care by virtue of being old? Or should they pay for their care on the grounds that it is an unreasonable burden to place on the younger people who will end up paying the bill? Should they, in fact, regard it as a normal part of the costs of life?

In this climate of concern about ageing and its costs, the Patient (Assisted Dying) Bill was introduced in Parliament in February 2003 by the cross-bencher peer Lord Joffe. As it did not have government support it had virtually no chance of becoming law. Nevertheless, it was seen as an opportunity to air, once again, the complex and varied views held by all kinds of people and organizations on the subject. It had its second reading, unopposed, in accordance with tradition, in June 2003. After that, significant changes were made to it, to deal with some of the objections. These reduced its scope in a variety of ways, including limiting application of the Bill to terminally ill patients and stating that in assisting someone to die the attending physician might only provide the means to end the person’s life, unless the latter was physically unable to do so, in which case the physician could become actively involved. The idea that the physician would only provide the wherewithal, rather than actually kill the person, had considerable attractions for some objectors to the original Bill, since it largely removed the great problem of doctors killing their patients, rather than attempting to heal them or temporarily alleviate their suffering. The changes also included additional safeguards, requiring a specialist to attend the patient to discuss the option of palliative care. After all this, and with these changes, the Bill was reintroduced as the Assisted Dying for the Terminally Ill Bill, in January 2004.

In March 2004, there was a second-reading debate in the Lords and the Bill was sent to a select committee, and it began to look as if it might become law. At that point, Lord Joffe suggested that the select committee might wish to consider the current experience of assisted dying in the Netherlands and Oregon, in particular whether vulnerable members of society had been put at risk and whether doctor/patient relationships had been adversely affected. He also suggested it would be worth examining whether palliative care could, in all cases, enable terminally ill patients to die with dignity and free from unnecessary suffering. He further asked for the committee to look at whether recent polls showing that 80 per cent of the public supported assisted dying reflected public opinion accurately. Finally, the committee was to examine whether the safeguards contained in the Bill to protect vulnerable members of society were adequate and, if not, what further measures might be necessary. The Joint Committee on Human Rights, in its report on 23 March 2003, was of the view that they were, but the Bill’s opponents were not persuaded.

The aim of the Bill was to enable a competent adult, suffering unbearably as a result of a terminal illness, to receive medical assistance to die at his or her own considered and persistent request; and to make provision for a person suffering from a terminal illness to receive pain relief medication. The main argument made in favour of the Bill was that attitudes had changed in the ten years since the possibility of helping terminally ill people to die was last considered by the House of Lords Select Committee on Medical Ethics. Ten years on, Baronesses Jay, Warnock, and Flather, formerly opposed to assisted suicide, were now supporters of a change in the law.

Secondly, it was argued that there has been a change in public opinion, particularly after the Diane Pretty case (Ms Pretty died in May 2002, three days after the European Court of Human Rights ruled that her husband could not legally help her to die). Thirdly, changes to the law in Belgium, Holland, and Oregon have apparently worked out well, with no real indication of the predicted dangers associated with assisted suicide actually materializing. For instance, the Dutch government’s Remmelink Report found no evidence of vulnerable people being put at risk or of increases in voluntary euthanasia in the previous five years. (It does have to be said, however, that supporters and opponents of the Bill infer different conclusions from international experience.)

Fourthly, people are able to travel to other countries, such as Switzerland, for assisted suicide, which those who support a change in the UK legislation regard as unreasonable. Fifthly, it gives choice to the patient rather than to doctors or society, a point made strongly by Baroness Flather. Indeed, the newly published Good Euthanasia Guide by Derek Humphry, a former Sunday Times journalist now based in Eugene, Oregon, suggests that personal choice is a powerful factor.

The main arguments made against the Bill were that there is still continued opposition from the British Medical Association (BMA) and the Royal Colleges, which is a real problem since a change in the law could only be effected with the support of doctors. Secondly, it was seen as ‘disastrous’ for ‘the terminally ill, the elderly, for disabled people, for the medical profession and for wider society’ by many peers, including Lord Alton of Liverpool, whose exact words are given here. Thirdly, it is seen as brutalizing society, with some drawing parallels with the death penalty and others arguing that the Bill would put pressure on all seriously ill people to consider assisted suicide, even if they had never previously considered such an idea.

Some argued that patients might feel obliged to choose assisted suicide for the ‘wrong reasons’, such as to avoid being a burden to others, or because of concerns about the financial implications for their families of a long terminal illness. Some also argued that it would create a ‘negative climate’ towards terminal illness, and that sick, disabled, and frail people might be made to feel even more acutely that they are a burden on society and on their relatives. Other objections centred on problems of definition: what is a terminal illness, particularly when some diagnoses prove to be incorrect and patients live much longer than predicted? Then it is often the case that seriously ill people are depressed, which might impede their ability to make rational decisions. Amongst the weightiest objections was the classic one from many healthcare professionals: that the legislation might affect patients’ trust in their physicians and thus alter the fundamental ethos of the medical profession–a view held by the BMA. Indeed, doctors generally remained opposed to the Bill.

Meanwhile, some argued that the proposed legislation placed too great a responsibility on doctors and that the benefits to the individual would be outweighed by the potential harm to society at large. Many also argued that the Bill was unnecessary because physicians can already relieve the pain of their patients, even if pain relief has the foreseen but unintended effect of shortening life. It was also suggested that the Bill would be impossible to police and would lead to more involuntary killings–the slippery slope argument. Then it was argued that such legislation would be seen as unacceptable to some faith communities and religious leaders: ‘Euthanasia is an act of violence, an attempt to take possession of the future…even if euthanasia were legalised in some form and pragmatic anxieties overcome, it could not be a course of action endorsed by Christians.’* It was also argued that that the insurance industry would be unlikely to accept the provision that no life insurance that has been in force for twelve months would be invalidated by a doctor having assisted a patient to die. Lastly, it was argued that the Monitoring Commission proposed in the Bill would be costly and that it would be difficult, if not impossible, to detect subtle coercion, pressure, or clinical errors after the event.

These were the arguments put forward over the debate, the longest re-examination of attitudes to assisted suicide in the UK in recent years. Meanwhile, many key organizations put in their views at the same time. For instance, Help the Aged strongly opposed any change in the current law related to assisted suicide. It argued:

The prohibition on assisted suicide is designed to protect some of the most vulnerable members of society, including many older people. Any change in the law would run the risk of abuse and would fundamentally change the doctor/patient relationship. Planning and taking decisions around the end of a life are deeply personal issues and, like any other adult, older people have a right to retain control, autonomy and choice. This choice includes the right to choose to refuse medical treatment. All too often, older people who wish to exercise such control are denied the right to be involved in decisions about the end of their lives. This debate highlights the lack of clarity and safeguards around decision making for very vulnerable people who may be unable to make or communicate their own decisions at any stage of their treatment or care. Help the Aged calls on the Government to introduce legislation to strengthen and support older people’s ability to make decisions about their own care, to ensure that their wishes are respected, and to allow them to retain choice and control over their lives at every stage.*

At the same time, the National Council for Hospice and Specialist Palliative Care argued that:

The principles of palliative care affirm life whilst regarding death as a natural process to be viewed neither with fear nor a sense of failure. Death may be impossible to postpone but should not be hastened. Respect for the dignity of the individual is important, and regarded by many as paramount. Such respect is not manifest in the act of killing the patient which would merely serve to confirm the individual’s falsely devalued sense of self-worth. We recommend that there should be no change in the law to permit euthanasia.†

The Voluntary Euthanasia Society, unsurprisingly, supported Lord Joffe’s Bill, whilst the Disability Rights Commission opposed it, not on moral grounds, but because it believed that until disabled people are treated equally, with their lives accorded the same value as those of non-disabled people, their access to necessary services guaranteed, and their social and economic opportunities equal to those of non-disabled people, the ‘right to die’ legislation might jeopardize people’s right to live:

The bill would open the floodgates for people who are not just terminally ill but for those with long term physical illnesses to be helped to die. The safeguards included in the bill are simply not good enough to guard against many disabled people being included.

There is simply no system of safeguards that can detect the hidden pressures and strains from relatives and carers that may drive a disabled person to seek an assisted suicide.

The absence of support services on the ground and high quality palliative care means that there cannot be a real choice. In this context, rather than ensuring the right to die, the bill would quickly translate into a duty to die for disabled people.*

The Royal College of Nursing also came out opposing euthanasia and assisted suicide: ‘The RCN is opposed to the introduction of any legalisation which would place the responsibility on nurses and other medical staff to respond to a demand for termination of life from any patient suffering from intractable, incurable or terminal illness.’† But that was not a totally universal view from the RCN. In a personal capacity, Karen Sanders, who chairs the RCN’s ethics forum stated: I feel strongly about euthanasia because I believe that competent adults who have incurable or insufferable diseases should have the right to make their own choices about their own lives.’

Despite those supporting or opposing Lord Joffe’s Bill who claim public opinion is on their side, it is actually extremely difficult to establish precisely what public opinion is on this issue. There is little independent information on how the public view assisted suicide, although it is clear that most major organizations concerned with the welfare of older and disabled people oppose changes to the current legislation. The Voluntary Euthanasia Society claims that 85 per cent of the population supports them, although it does not specify what, precisely, the support relates to or how it can be so sure. Many other polls ask questions that are so vague as to be almost worthless. For example, the Sun newspaper’s 1997 telephone poll asked whether terminally ill people should have the right to die with dignity; unsurprisingly, 97 per cent said yes. But the mood is shifting and Deborah Annetts, Chief Executive of the Voluntary Euthanasia Society, is right to argue that, as an increasingly secular society in which more people are living longer, our demography will itself be a catalyst for change.*

Whilst all the debate around Lord Joffe’s Bill was taking place, the Christian Medical Fellowship recommended a letter-writing campaign for people to express opposition to the Bill, but it is not clear what the response to this was. An Independent on Sunday poll in 2001 asked, ‘Should people have the right to die when they choose?’ and found-unsurprisingly, given the vagueness of the question-that 85 per cent of respondents answered yes and 15 per cent answered no. Meanwhile, a survey by the Disability Rights Commission reported that 63 per cent of people felt there should be new laws to make euthanasia or assisted suicide legal. However, more than eight out of ten respondents said measures were needed to protect disabled people from the use of ‘do not resuscitate’ notices and the withholding or withdrawal of treatment.

Much of the debate in the media has related to people dying of ‘terminal illness’ such as cancer or motor neurone disease. It is not clear whether some of the common diseases of old age, such as heart failure, dementia, or strokes, or even the natural processes of ageing itself, are typically viewed as terminal illnesses. Consequently, with the exception of some age-related organizations such as Help the Aged, the possible implications for older people of proposed changes in the law are not addressed as frequently as those for younger people. Yet it is the fear of living after a massively disabling stroke, of being completely dependent and unable to exercise one’s autonomy, that has driven the Bill’s supporters to try to get legislation through. Despite the public discussion being focused to a considerable extent on younger people, support for this legislation is at least in part about the fear of being very old and dependent, in both existential and economic terms.

There is certainly an argument for personal self-determination, to allow older people, and others who are terminally ill, to decide when they have had enough. According to that view, it is morally acceptable, for old people-or anyone else, for that matter-to be able to decide they have had enough and to exercise their autonomy. Test cases suggest that the public is increasingly sympathetic to this argument. The classic example is the 1992 case of Dr Nigel Cox, who acceded to a patient’s request-he had known her well for years-to put her out of her misery. Though charged with homicide, he was not in fact convicted and it was clear that he had the support of the patient’s family. He was not ‘struck off the medical register but was required instead to go on palliative care training, the argument being that, with more specialized knowledge, he might have been able to improve his patient’s pain control.* There has also been major debate on these issues in the House of Lords (Select Committee on Medical Ethics.) But the arguments need spelling out.

First, it is one thing to kill oneself because one cannot bear to continue living. Suppose one were suffering unbearable pain, or extreme depression. Although it is terrible for those who are left behind, whose guilt is never assuaged because they feel they could have done more, there is a strong case for saying such suicides are not sinful. I say this despite the teachings of almost all the religious groupings. Historically, religions have argued that suicide is a sin. Those who committed suicide were often not buried in the same cemetery as those who died naturally; they might even be buried with a stake driven though their hearts, as consummate sinners. The argument was that God had given life and it was not for human beings to decide when life should be ended. Yet judicial killing was somehow permitted alongside this view, and the ‘just war’ was also permissible. So the logic barely stands up.

Japanese culture, and some others, have taken a different view in particular circumstances. Certainly there is also a strong argument for discouraging suicide. It is, after all, too easy to do, and the waste of opportunity, talent, and expectation is palpable. Nevertheless, with all the reservations about acute depression being a mental illness and the desire for suicide it sometimes engenders therefore being the result of an abnormal psychological state, it does have to be said that for some people life is intolerable. If that is the case, there may not be a strong argument to prevent them from committing suicide, or even for criticizing them posthumously if they succeed. In other words, there is a moral dimension to the argument that suicide, in these circumstances, is not necessarily wrong and that attitudes towards it should change.

It is therefore not necessarily wrong for someone to whom life has become intolerable, for instance through continual pain, to commit suicide. What is wrong is to expect them to do it in order to relieve the obligation of their care from their family or from society at large, or to ask someone else to help them to do it. And therein lies the rub, for it is not easy to commit suicide if one is already very frail. This might encourage people who had not yet reached this condition to contemplate suicide before they became too incapacitated to carry it out.

That is a problem answered to a considerable extent by the idea of having legalized euthanasia. Obviously real safeguards would have to be put in place. Doctors could not act without another doctor, or health professional, or some other person, witnessing the request and formalizing it in some way. People of sound mind would then be able to take control of their own lives and deaths. What argument can there really be against such a system, properly designed with protection in place for individuals and protection, legal and ethical, for health professionals?

The answer has to be that it is simply wrong to ask someone else to kill you. If an individual wants to commit suicide, sad though it is, that is understandable. One could even argue that it is their right to do so, especially if they are terminally ill already and however traumatic for everyone left behind. But to ask other people to do it for you, because you lack the determination or because you want to wait to the last possible moment when life seems truly to have nothing 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.