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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.’* (#ulink_a2e36ca9-d382-5a44-857e-0806f007299d) 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.* (#ulink_f7386aca-9782-5af6-8253-d2fa4b16533a)
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.
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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.* (#ulink_38462b2c-57c4-53af-bdf4-793152c12937)
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.’
(#ulink_41ade759-8249-5cf1-8684-9a59c9f37eb5) 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.* (#ulink_9422ec3b-140b-50d8-8ca1-099b617c92cf)
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.* (#ulink_740aaebd-3c49-51c1-9c25-cf41fe5037a5) 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.
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 up resources that should be used for younger people? A King’s Fund study in 2001 found that three out of four senior managers believed that age discrimination existed in some form or other in services in their local area. Discrimination included policies restricting access to particular units or treatments, although age-related policies were thought to be on the decline.* (#ulink_a6d0a798-b6cd-55d8-a404-e7816c94e626)
Discrimination and Rationing
The cost of caring for older people can only be contained if the general view is that it is morally right to do so, and that requires a public debate and a willingness to change on the part of the medical profession. Older people must not feel they are being denied care. But care in the future might be different from what they get at present. It could mean more palliative care for the relief of pain and suffering, more holistic and less scientifically driven care. Indeed, it might mean that care–rather than often futile attempts to cure–goes higher up the agenda.
This is the nub of one of the key issues facing the frail elderly and those of us concerned about their welfare. For what quality of life do patients enjoy after all the hi-tech healthcare? At present, nearly 29 per cent of all healthcare costs are concentrated on people in their last year of life (and, obviously, death rates rise with age). More dramatically, when looked at by age group, of all healthcare spending devoted to those aged 65–74, 43 per cent is devoted to those in their last year of life; for those aged 75–84 the figure is 56 per cent and for 85+ it is 65 per cent.* (#ulink_d47cb38a-8fd9-54a4-b7c1-a9ca57381d12)
It is hardly surprising that costs should be heavy in the last year of life, but if our true aim were to be the preservation of life at any cost, then we could certainly do more to keep old people alive than we do at present. For instance, are we keen to prescribe unpleasant chemotherapies for as yet incurable cancers, on the basis that our success rate is improving and one day they will work, as with the childhood leukaemias? Are we willing to say we will spend more on the life of a premature baby, a child or young person than on older people? Should we ration healthcare by age? Evidence exists for the rationing of care of people with coronary heart disease and cancer. Until recently, screening for breast cancer stopped at the age of 64. Now, women aged between 50 and 64 are routinely invited for breast screening every three years, and work has been carried out to extend the programme to women up to and including the age of 70 from the end of 2004.
One might argue that age criteria in breast screening have been in place because of lack of occurrence (in fact, incidence goes up with age) or because the life of a woman of, say, 70 who has advanced breast cancer has not been thought worth making an effort to save. Many experts argue that the cancer grows so slowly in older women that they will probably die of something else. But perhaps that is no longer the case with increased life expectancy. A woman of 70 is likely to be no longer economically active, yet it is also likely that she will be caring for an elderly husband or sibling–thus saving the state the cost of care. Is this not an economic activity? It may not increase GDP, but it certainly saves the state increased expenditure on social care.
The resource allocation arguments about rationing on the basis of age are well argued. The two positions are beautifully spelled out in the work of Professor Alan Williams of the Centre for Health Economics at the University of York, who is in favour of the use of age as a determinant for rationing decisions, and Professor Sir Grimley Evans, Professor of Clinical Gerontology at Oxford, who is strongly opposed. Williams argues* (#ulink_adcd5794-4d2a-5a95-ae30-f0fbcee370d9) that there is a vain pursuit of immortality (true) and that people over 65 are a far larger proportion of the population than they ever were. That is a point well taken. He argues that as we get older we accumulate a ‘distressing collection of chronic incurable conditions’. Some are a nuisance, but some are serious, involving disability and pain. Though most are incurable, that does not imply that they are untreatable. We also get more problems with acute conditions such as pneumonia and flu, and find it difficult to recover from what younger people take in their stride, like a fall. Hence healthcare expenditure on older people is comparatively so large.
Yet we know that much can be done for older people that is not hugely expensive, in terms of alleviation of symptoms and improving the quality of life in an unglamorous way. But, Williams argues, these unglamorous down-to-earth activities tend to lose out to hi-tech interventions which ‘gain their emotional hold by claiming that life threatening conditions should always take priority’. (This is, of course, a separate argument.) Taken to its logical conclusion, this would suggest that no one should be allowed to die until everything possible has been tried. That in turn suggests that we will all die in an intensive care unit (as many people in the USA do).
But this is not sensible. For all of us, there should come a time when we realize that a reasonable limit has to be set upon the demands we make of the system–and on our fellow citizens. What principles should determine that limit? Williams argues that the objective of the NHS should be to improve the health of the nation as a whole–the utilitarian argument. If that is so, then the people who should get priority are those who will benefit most from the resources available. So, if the concern is for the health of the nation, the older person is likely to lose out against the younger. If those are the values of the system, then the interests of a particular interest group are less important than the interests of the whole. So age will matter in two ways. It will affect the individual’s capacity to benefit from healthcare, making the relative cost of a procedure more expensive for older people, and it will incorporate the idea of a ‘fair innings’ by which older people are somehow thought to have had their share of living.
Grimley Evans* (#ulink_189b010f-487c-54d8-8f1f-8bc9f6098093) argues the opposite. He says that each of us should be treated as an individual. He argues it would be unacceptable to disadvantage people on the grounds of race, gender or national, or social origin. How, then, can it be justified on the grounds of age?
He then suggests it is easy to do so because older people in Britain, unlike in the United States, have not traditionally been organized politically. They rarely complain, refuse to pay their taxes, or cause riots. Militancy is virtually unknown amongst older people in Britain. Yet things may be changing, despite a slow start. Ageism remains legal thus far in the UK, and there is a growing body of evidence on age discrimination in a whole variety of services, particularly in health and social services as they affect the very old. Older people are beginning to complain. But Grimley Evans reserves his real scorn for prejudice. The old are seen to have less worth than younger people. Public attitudes in some surveys suggest this to be true. Survey interviews are rarely confidential. It is unlikely that people would say that one should discriminate on the basis of colour–even though there is racism in British society. But racism is publicly unacceptable. Ageism, on the other hand, is acceptable, and palpably so, and it is this that has led to a society in which there are so many frightened old people.
Grimley Evans then attacks the health economists. He suggests economists should restrict themselves to finding the most cost-effective way of distributing resources and that the ideology of efficiency, markets, and cost containment is no more valid than the ideology it replaced–of common purpose, collaboration, and social purpose. In the current NHS system one’s viewpoint depends on whether one is a user or a provider. The professional providers, one way and another, look for the best return on their investment of time and money. Users of the service, on the other hand, see the NHS as a sort of AA or RAC, there for use when they want/ need it. Citizens as taxpayers might agree with Williams, but British citizens as patients would ally themselves with service users, whose desire is to have their needs/wants met. Grimley Evans suggests that the users’ perspective provides a rationale more consistent with national values and with the explicit intentions of the NHS at its foundation. That is, in my view, having examined the earliest documents about the foundation of the NHS, debatable to say the least.
Do we then believe that all service users should be treated equally, however old? The measurement of outputs in units based on life years indirectly (or directly) puts different values on people according to their life expectancy. Older people are disadvantaged and, more generally, people are no longer reckoned equal. Secondly, the economists’ view assumes that the value of a life can be measured by its length. But if we assert the unique individuality of the person, then the only person who can put a value on a life is the person living it. Grimley Evans’ conclusion is that lives of people are not formally comparable; it is ‘mathematically as well as ethically improper to pile weighted valuations of them together as an aggregable commodity like tonnes of coal’. He continues by taking a swipe at nations who value their citizens only for their use to the state. Yet the NHS was at least in part set up to create that healthy workforce for the state, and people were not expected to live on into frail old age and lengthy retirement. He also suggests that the UK has a different set of values about individual human life from the economists’ outlook. He may be right, but it is as yet untested. He argues that we should not create, on the basis of age or any other characteristic over which the individual has no control, classes of untermenschen whose lives and well-being are deemed not worth spending money on.
But however the argument is played out, it has influenced older people. My father, who had his first heart attack at the age of 51 in 1965, survived to be 82. He was plagued with coronary heart disease for the rest of his life, but managed, despite a second coronary, to continue working until he was seventy years of age and to survive, with considerable determination, two coronary heart bypasses, one endarterectomy to prevent him having a stroke when the carotid artery became narrowed, and several other minor bits of surgery. Towards the end of his life, when he was over eighty, he would often say to me, as some other intervention or new drug was proposed, that perhaps he should not be having all this attention lavished on him. Yet he had a considerable quality of life. He carried on writing and thinking until just before he died. Determination made life, for him, very much worth living. And it did so for us, who did not want to lose him.
It is against that background that I think every day about the question of rationing on the basis of age. Can it be right? Is age the only determinant? Is it, indeed, a determinant of the kind of care one should receive? Pensioners make up a quarter of the bottom fifth of the income distribution. Householders aged 75+ are more likely to have housing that is unfit or substandard. Over 250,000 are on council waiting lists for sheltered accommodation. Isn’t the test of a civilized society not only how it treats minorities, but also how it cares for its older people who are dependent on it? Do we send them to the knackers’ yard, drown them in the well, cook them up for a stew like the cock? At least we’d get some last bit of use out of them. Or do we value them for who they are? Is there an inter-generational obligation?
Can we calculate what people should be entitled to? Should families have to look after their older relatives? What does that mean as families change? Should an ex-daughter-in-law look after her ex-parents-in-law? If so, this tells us a lot about older people and families generally. Can we judge other people’s families and what they do? Or is it a state duty to provide? Our four animals ended up living happily ever after in a house that had been taken by robbers, which they then took by force from them. We have no equivalent, unless we argue that being denied care when the NHS promised to look after them ‘from cradle to grave’ is a kind of robbery. But, whatever we feel about that analogy, the point has to be made that caring for older people properly is expensive. Someone has to pay, and it may be older people themselves. Even so, is it acceptable to treat them so poorly? Or is there truly a lesson to be learned from the Bremen town musicians: that older people will only succeed in getting decent care if they extract it by force? And what would that suggest then for the nature of our society, if groups had to become violent to get noticed?
Nursing Homes and Care Provision
The nearest we have seen to this kind of public anger was over the Royal Commission on Long-term Care, chaired by Sir Stuart (now Lord) Sutherland, which was set up when the Labour government came to office in 1997. Its members were chosen from a variety of areas, with a heavy weighting given to nurses. Its conclusions were, essentially, that the government, with restrictions according to nursing assessments, would have to pick up the cost of the long-term care of older people.
The Commission’s basic argument was that, in an NHS that was free at the point of use, there was no distinction to be drawn between the kind of long-term care a person needed when very old and frail and the kind of help and care they needed when acutely ill in hospital. This was the majority view, though the debate over the distinction between nursing care and social care demonstrated the impossibility of the position we had got ourselves into, historically speaking. There were two dissenters, the aforementioned Joel Joffe, now Lord Joffe, who was worried by the rising and unsustainable costs of long-term care for the elderly, and David (now Lord) Lipsey, who realized that the Commission was moving towards a conclusion that would be entirely untenable as far as the government was concerned. He did everything in his power to make the other members change their view. His final minority report made it clear that he believed that older people themselves would have to pay the costs of long-term care.* (#ulink_70f8730b-68d2-5e83-9fd0-f01955ce838d)
Both the government and the Royal Commission missed a trick here and caused deep resentment amongst older people and their families that has not gone away, at least in part because people feel a grave injustice has been done. Indeed, it is in this area that real political action by older people might still become a reality, in a society where grey power has been a long time in coming. The curious thing is that this was, and is, an entirely unnecessary outcome. The Royal Commission ended with a recommendation, essentially, that long-term care should be paid for by the statutory sector. The implication was that the tax rates would have to rise to pay for this. They never quite got to the bottom of what was nursing care and what was social care, a problem that has bedevilled the care of older people for all my working life and which has caused much unfairness.
The classic question is that of the bath. Is giving someone a bath because they smell a nursing or a social task? If they smell, it is argued, it is a social bath. If they have sores or the possibility of them, then it is a nursing bath. On those grounds, the same bath, given to the same person, could either be given for free, for medical reasons, or be paid for, for social reasons.
After the government decided to reject the Royal Commission’s recommendation of requiring statutory payment, it came up with the worst of all settlements. According to assessments made by nurses, older people would get a weekly payment according to need, but this was not enough to pay the cost of a care or nursing home.
This has led to some bizarre results and is a good example of the politics of unintended consequences. Relatively wealthy older people, already in nursing homes and deeply dependent on nursing and social care, are getting help with the fees for their homes, usually allowing the nursing homes to raise their fees. Poorly off older people, not quite so dependent but without the children and relatives who might provide a some care, do not get enough help to allow them to be in a nursing home or care home, unless their dependency becomes so severe that the reluctant local authority decides to pay. Meanwhile, for many nursing home owners the fees provided by local authorities are so low that they have decided the whole area is uneconomic. They can make more money by selling the properties, especially in the booming southeast, and pocketing the profits. Staff costs have been rising and the availability of staff generally declining. The government settlement of help with nursing care has done nothing except raise costs and give a bit of help, often to the better off who are already paying their way in nursing homes.
In Scotland, where the decision was made to go the other way and to pay the full cost of care, the nursing homes are now deluged with older people and the system is cracking under the strain. Despite the strong feeling within the Scottish Parliament that this was the right direction, the total subsidy of nursing home care makes it virtually impossible to choke off demand. And in parts of Scotland where there is low employment or where property prices have not risen very rapidly, there has been an epidemic of nursing and care homes opening, simply because the income–though not huge–is assured.
All of this has been horribly unfair and has disappointed older people, who greatly fear the need for nursing home care and the giving up of independence. And it was unnecessary. Few older people and their families feel that it is essential that the whole cost of long-term care should be borne by the state. Approximately one in four older people will need long-term care of some kind–a proportion so high that it might seem like the kind of risk we should expect people to take on for themselves. Supposing the settlement went rather differently. Supposing older people themselves were required to take on part of the risk–perhaps paying for up to two years of care, which is the average time older people spend in long-term care. Beyond that period the costs would be fully covered by the state. One major advantage of such a scheme is that it would deal with the issue of unfairness. Though there is still a one in four chance that long-term care will be needed, it is reasonable to ask people to plan ahead for such an eventuality. But the cost would not be open-ended and, if prepared for by saving or by taking out an insurance policy, would not require people to realize major assets, such as selling their house, which is currently a cause of huge resentment. Though many people might not like such a system, they could not say it was unfair. Nursing contributions could then be restricted to those who elect to stay in their own homes-a further discouragement, if one were needed, to going into a nursing home.
The reason for the anger on the part of older people was so predictable and so unnecessary. The government was trying to choke off the cost of long-term care to the statutory sector, which is what governments do. But to older people, as well as their carers and children, it seemed as if the government thought people were going into nursing homes for fun, as if it was some kind of luxury item, like going on exotic foreign holidays. But for most older people, going into a nursing home is the last stage on a journey to death, much resented, much feared, the last thing most of them want to do. It was completely unnecessary for older people to become distrustful of a new government that had come in promising to do something about a situation that was generally agreed to be appallingly unfair. All the accusations were thrown into the ring: older people had paid their taxes, older people had given service to King and country during the war, older people were being abandoned, older people were being neglected, older people were being badly treated by the NHS and were now not even being helped when they needed long-term care. But underneath all this there was genuine resentment. Older people had paid their taxes on the basis of care ‘from cradle to grave’ and this undertaking had been broken without any debate, without consent from those for whom it had, apparently, been made. Older people had trusted the new promises of the welfare state from 1948. And that trust was being betrayed.
People do not choose to go into long-term care, even though their relatives sometimes think it is the best option. People want to stay in their own homes and remain independent for as long as possible. Sometimes this is not possible. Did the government not understand what an awful decision it is to have to give up one’s home, to embark on a one-way journey into a care home, to surrender one’s privacy, to have no control over one’s own life? Did they not understand that care homes and nursing homes are a necessity, not a luxury? Could there not have been some sympathy, some generosity, here? Instead, there are cases, time after time, of the Ombudsman finding that guidance on NHS funded care has been misinterpreted to save the NHS money, with a particularly heavy judgment in April 2000 that lead to considerable payouts by the NHS. The scandals about payment are legion, with an excellent campaign being run sporadically by the Daily Mail, ‘Dignity for the Elderly’, about the perversity and unfairness of the system. Since the government has paid out over £180 million in compensation to people who should never have had to pay their fees at all, it has been argued that ‘this is just the tip of the iceberg…The system is failing the most vulnerable members of our society, many of whom fought for our freedom and paid taxes throughout a long and productive life…More than 70,000 are selling their homes every year to pay nursing home fees often amounting to hundreds of thousands of pounds.’* (#ulink_4c5a0831-8155-5ca6-98b4-6158b1d97bef) The Daily Mail has not been alone in taking up the cudgels on behalf of older people. No one wants to be in a care home, and this is where government has made such a huge mistake.
Grey Power
From the resentment caused by the government’s reaction to the Royal Commission on Long Term Care, after years of surprising political inactivity amongst older people, there has grown the beginnings of a grey-power movement. It does not yet have real political teeth, but they will come. Though the organisation of the grey vote is not in the league of similar movements in the USA, the voting figures, which show that older people vote more than younger people, make governments nervous. If older people voted more on self interest, then governments would be in trouble.
And there are signs that older people, who have not hitherto voted on sectional interests, are beginning to change. They see themselves as having to bear the risk of the costs of long-term care, and they cannot see how they can trust a government that has, in their view, reneged on a promise to remove the inequities of the present system. Worse than that, they are beginning to ask whether they can trust any government to treat them fairly. The 75p increase in the old age pension in 2000 met with a furious response. As Gary Younge pointed out, in a hard hitting article in The Guardian shortly after that famous increase, the government’s determination to keep the pension increase index linked ‘was more than a mathematical calculation. There was political arithmetic there too.’* (#ulink_a1ae0bcf-e79a-51c3-a399-d7c27cae9550) The assumption, as Younge makes clear, was that old people would complain but that they would not fight back.
But the government got it wrong. Older people did fight back. The National Pensioners’ Convention is growing. On the question of council tax, some older people have simply refused to pay. In March 2002, one old lady, 102-year-old Rose Cottle, furious at the prospective closure of her care home where she had lived happily for many years, took a petition to Downing Street and caused some embarrassment-but not enough. By the next week things had moved on, and she was forgotten. Some have gone on hunger strike, and others have been moved-against their will-and have died shortly afterwards. But grey power is coming. As The Economist made clear recently, the overall fall in voter turnout is largely a change in the voting patterns of the young.
(#ulink_45668836-f8e5-584b-95ee-26b3c790b4cc) The old vote as they always have done. So pensioners, who represent 24 per cent of the voting-age population, accounted for 35 per cent of votes at the last election. At the next one, the figure is more likely to be 40 per cent. So grey power will soon begin to bite.* (#ulink_ad3db308-91f9-5989-9c0d-37038ab6235f)
Long-term care has been one source of anger amongst older people. Another issue that has caused resentment is abuse.
Abuse
A survey conducted by Age Concern as far back as 1991 estimated that between 5 and 9 per cent of people aged over 65 had been abused-more than half a million people. The incidence of abuse is clearly likely to increase as the population ages: the greater the level of dependency, the greater the risk of abuse. In 2004 Jennie Potter, a district nurse who is a national officer of the Community and District Nursing Association, compiled a report on abuse of older people
(#ulink_7396ed24-4785-58e0-ab90-7d16cfce692d) that suggested the problem was widespread. The CDNA surveyed just over seven hundred nurses, and found that a staggering 88 per cent of them had encountered elder abuse at work, 12 per cent of them daily, weekly, or monthly. The most common form of abuse was verbal (67 per cent), followed by emotional (51 per cent), physical (49 per cent), financial (34 per cent), and sexual (8 per cent). The most likely perpetrators were partners (45 per cent), followed by sons (32 per cent), daughters or other family members (29 per cent), paid carers (26 per cent), nurses (5 per cent), or other persons (4 per cent).
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This suggests a huge incidence of abuse, one that until recently we did not take seriously. Though dramatic cases often make the local press, very few are reported in the national papers. The appalling case of 78-year-old Margaret Panting, for instance, who died after receiving huge physical abuse that included cigarette burns and cuts from razor blades is little known. Whilst there is a major inquiry over the death of Victoria Climbié, and over every other child who dies in appalling circumstances, abuse of older people, which may also lead to death, simply does not carry the same weight, or tug at the heart strings as much. Yet there is equally a serious problem here, and some older people, as well as their carers and nurses, are now speaking up about it in a brave and forthright way. For it is not a simple issue, which, to some extent, is why older people have been loathe to raise it. Though there is some violence against older people on the wards of hospitals, most abuse is not the stuff of headlines. Much of it is score settling-often by a wife who feels she has had a rough time at the hands of her husband-when one partner becomes physically dependent on another. This may be no more than rough handling, verbal abuse, and a general lack of care and kindness. But it can still make the last years, months, or weeks of a person’s life intolerable. Then there are some paid carers who take advantage of their position to steal from their employers. I well remember my own mother’s fear of us confronting one of her early carers (the majority were completely wonderful, with this one exception) who was stealing from her and forging stolen cheques. That fear, that loss of the normal ability to confront an issue, makes the abuse of older people truly dreadful.
Even more complicated is the amount of abuse received from partners and children, normally due to the considerable levels of stress experienced from trying to care for someone as well as carrying on with the normal things of life. Action on Elder Abuse, a charity set up in 1993, has been campaigning for urgent official action after demonstrating in a variety of ways, including an undercover TV programme in late 2003,* (#ulink_364cb3a4-c6e0-511d-baac-76308788813f) the seriousness of the situation. An analysis of the calls the charity received over a two-year period from 1997 to 1999 demonstrated that two-thirds of the calls came from older people themselves or their relatives. Most of the calls concerned abuse in people’s own homes, though a quarter were about abuse in nursing homes, residential care homes, and hospitals.* (#ulink_3162da44-9c78-52e2-b20c-a03e15f69caf) There were cases of near starvation in care homes, of helpless older people left to die because their buzzers had been placed out of reach, nurses sleeping through night shifts and dressing patients in incontinence pads so they would not be disturbed, and the attempted suicide of several people in nursing homes that were due to close. Some of the statistics are particularly concerning. For instance, abuse appears to increase with age, and therefore with vulnerability. Given that vulnerability makes it harder to complain, this is particularly terrifying. Three times as many calls to Action on Elder Abuse concern abuse of women: women live longer and are therefore likely to be amongst the very old.
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There is the additional likelihood that cases of abuse will rise as the population grows older and the number of people with Alzheimer’s disease increases. Though we may not be ill for any longer than previous generations, the nature of our illnesses is changing. The increase of Alzheimer’s disease has huge implications for the kind of care we will need, and the amount of patience that will be required to deal with often very difficult, irrational, older people. Ironically, it will be even harder to detect abuse, for often the complainers will not be believed, even if they are telling the truth, simply because of the nature of the disease. Caring for those with dementia requires such a degree of patience and skill, and can lead to such frustration, that the chances of abuse increase and the levels of care needed will be much greater-for instance, more and more lengthy home visits will be required. Present provision is patchy at best, and often simply unsatisfactory, as Tony Robinson reported in his story in the Daily Mail about the care his parents received:* (#ulink_b8f8eacc-cab7-5abd-8608-a6343b39474c) ‘The NHS still fails to recognize the special needs of people with dementia, and won’t pay for their long term care…If we want a dignified old age for ourselves and our parents, it’s up to us to do something about it.’ Meanwhile, research suggests that some 22,000 old people are being given drugs to sedate them, to make it easier for care staff to manage them, according to Paul Burstow, the Liberal Democrat spokesman.
(#ulink_f666bec6-f5ce-56c5-9387-26947fcd98fa) If anything, this figure seems on the low side.
Yet on this whole question of abuse of older people there are detectable signs of change-most notably in the fact that considerable numbers of older people have raised the issue themselves. They have told district nurses, social workers and others, including friends, that they are being abused-despite the difficulties involved for those who may not have access to a telephone and the fact that those committing abuse may be close family members, as well as professional carers. Action on Elder Abuse suggests that there is a category of carers who hop from one agency to another as soon as suspicions about their abusive behaviour become known, with the result that they are able to move to another care home, to another group of vulnerable older people, and perpetrate their abuse all over again. To compound the problem it will be a long time before the National Care Standards Commission will be able to register all care workers. Action on Elder Abuse:
(#ulink_64c5abf1-0ef4-5e87-b1fa-cb47d2070dfc) argues that it may take anything between ten and eighteen years before care assistants and home helps are registered by the General Social Care Council; yet, as Gary FitzGerald, Chief Executive of Action on Elder Abuse, argues: ‘Less than three per cent of the identified abusers are social workers, whilst 36 per cent are home helps. There is clear evidence that we need to look at the other end of the scale.’ Despite this, the General Social Care Council is starting with the registration of social workers. Even when it reaches all care workers, registration will not give us all the answers because there will always be staff shortages and employers may well believe-understandably-that it is better to have some staff, even if a bit dubious, than none. Whilst the government wants half of all care home staff to have achieved NVQ level 2 by 2005, it must be questionable whether care home owners will pursue that goal as hard as they might, given how hard it is to get staff at all. It must be equally in doubt whether individuals who might have thought about becoming care staff will bother to go all out to be recognized as capable and reliable in these circumstances, given the numbers of hoops they will now have to go through.
Only the worst cases of abuse make the news, such as the attack in 2000 on Lillian Mackenzie, who was kicked and beaten by two teenage girls who were befriended by her. Jean Lyons and her sister Kelly had run errands for Mrs Mackenzie, who lived in the same block on an estate in Manor House, north London. Wearing balaclavas, they kicked her, beat her with an iron bar, and robbed her of about £800, as well as stealing her handbag and some documents. They then visited friends and bragged about what they had done. Yet Kelly was able to tell the jury that Mrs Mackenzie had been ‘like a nan’ to her and had taken her for meals at a local cafe. This was, as one reporter put it, ‘as mean and despicable offence as can be imagined’.* (#ulink_bd8fc337-a6ff-5075-a78a-acb3f7811b2b)
Yet if one scans the local papers, there are hundreds upon hundreds of cases. In June 2003, the Yorkshire papers took serious issue with a nurse who took away an older person’s buzzer because he was using it too much. He had to be fed by tube, as his stroke had left him unable to speak and partially paralysed. Yet he was perceived as being too much of a nuisance. As a result, he was overfed by five times the correct amount, could not let staff know things had gone wrong, and died unnecessarily.* (#ulink_076e878c-ec03-5776-8930-8f13e8907985) Another nurse in Yorkshire strapped up her patients in incontinence pads so she could sleep the night shift through, resulting in blisters, sores, and burns.
(#ulink_5cffbe10-cff4-51bf-8479-ef3aff665155) In Leicester a care worker was given a caution for slapping a frail older person. Again in Yorkshire, a nurse was accused of running a military style ‘boot camp’ in a care home for mentally ill older people: she had sworn at a 90-year-old wheelchair-bound man, as well as instructing care assistants not to lift up a 78-year-old man with dementia after he had fallen on the floor with his trousers round his ankles.
(#ulink_2e10999e-a966-504a-87c9-6c0fed3323f5) A woman of 69, a psychiatric patient, had her bed moved away from an alarm button because she was constantly pressing it. Mrs Wootton had a long history of mental health problems, and had set herself on fire whilst in hospital. But her death was the result falling from her bed whilst trying to reach the buzzer. She sustained a broken hip and, later, bronchial pneumonia.
(#ulink_8f9d0e8f-431e-5069-919c-2415d446b4dd) And these examples are quite apart from the murder investigations and the major cases of neglect.
The truth is that we know about this in our hearts. We see it ourselves with our own eyes. Look at the fear, the terror, in the eyes of some older people in hospital wards, in care homes, in nursing homes. Listen to what they say in code. Listen to how their carers speak about them. It is not universal, by any means, but it is common. And one of the terrifying things is that we have known about it, subliminally perhaps, for many years.
The redoubtable campaigner Erin Pizzey, famous for her action on domestic violence, has now taken up the cudgels. She argues that abuse of the elderly has a terrible habit of being kept quiet: ‘It is a bit like domestic violence amongst the middle classes–no one ever talked about it, although people knew it was going on…If baby-boomers don’t start kicking ass now about elder abuse, this will be their future–and they are a generation who are used to their freedoms. Tackling elder abuse requires a revolution–a grey revolution.’* (#ulink_85433279-4bb6-5baf-b642-5dae4dc698d9)
We know human beings are often very abusive to people who are in their care. We understand that there is a risk, but our way of dealing with it is to add layer upon layer of regulation and inspection rather than to encourage the opening up of institutions such as care homes and nursing homes so that ordinary people can come and go frequently, as part of daily life. Whether those in care are children, older people, people with enduring mental illness or learning disabilities, or even prisoners, cruelty can often well up from the depths of the human personality. We know it well enough from all the inquiries into abuse in large institutions. Abuse occurs wherever vulnerability exists. If we have strong legislation to protect the vulnerability of animals, why not for older people also? But legislation needs to go hand in hand with opening up institutions, for openness is far more likely to breed an atmosphere of trust than any system of regulation and inspection.
Fear of abuse has been further exacerbated by the chaos surrounding care and nursing homes, particularly, though not exclusively, in the south and west of England. With the rise in property prices nursing home and care home owners find it difficult to maintain standards and get staff. One by one, homes have been closing. The result is that older people who moved–often unwillingly–into nursing and residential care find themselves with nowhere to go when they are at their frailest and most desperate. Though this is not abuse as such, it is a form of mistreatment that beggars belief. Many professionals suspect that many old people attempt suicide because their future in such circumstances is so bleak.
Abuse exists in the NHS sector as well, as the CHI (Commission for Health Improvement) report into conditions in Rowan Ward of the Manchester Mental Health and Social Care Trust made clear. There was abuse, an inward-looking culture, low staffing levels, high use of agency staff, poor supervision and appalling management.* (#ulink_85b59d6f-2120-5139-ad1a-332dc13d213e) The report, which came after complaints of abuse of older patients by staff, found amongst other things: a ward left physically isolated when other services were moved to more modern premises elsewhere; poor reporting and clinical governance procedures that failed to pick up early warnings of abuse; regimented care; ‘Patients’ clothing was changed and their hygiene needs addressed according to a schedule rather than when the need arose.’ They also found sickness rates of 9.8 per cent during 2002 among nursing staff; widespread use of mixed sex wards in the Trust’s older-age mental health services; ‘rudimentary’ performance management of staff; an aimless service; and a lack of management attention to quality of care caused by transition to care trust status.
So can the NHS do better? Its record in this area is not all that reassuring. An inquiry by the Health Advisory Service in 2000
(#ulink_7867b3ac-9834-598c-8785-866e4203d4c9) demonstrated that older people were less satisfied with the care they received than younger people-which is surprising given that older people complain less than younger people. They experienced unacceptably long delays in admission, problems with feeding and with the physical environment, staff shortages, privacy and dignity, communication with staff, and, most profoundly, with staff attitudes towards older people. The recommendations were lengthy, but the most significant was that everyone-patients, relatives, and staff-has to take on responsibility for challenging negative attitudes about old age, about prospects for recovery, and about worth. So if the NHS has problems of this sort, will voluntary organizations take on the provision of care homes? Many already do, particularly those that are religiously or ethnically based. The mess in care home provision has come about as a result of inadequate planning and a cross-party agreement to shift the burden of care to the private sector. But the position is untenable. The risks of abuse would not be not hugely improved, and feelings of insecurity would remain.
An inquiry into the care market in London currently being carried out by the King’s Fund shows that there are still concerns about a number of familiar issues. For example, there is a very limited choice of care and support for older people. While there is no evidence of insufficient care home places for older Londoners, these may not always be where people want them; and there certainly is a shortage of services for older people with mental health problems such as dementia. The King’s Fund has also found that throughout London there are difficulties in recruiting and retaining nurses, social workers, therapists, and care workers. Older people’s views of services have been shown to be varied; some are very appreciative of a wide range of services, but there are widespread concerns about the quality of home care and residential care services. All of this is compounded by financial pressures, for in spite of increased government spending councils have to juggle the needs of older people with other priorities.
Though inspection of care homes has led to the uncovering of some abuse, inspection in itself is not enough: in fact the burden of inspection and regulation on an already precarious nursing and care home sector may make even more owners give up. Part of the answer lies in allowing ordinary people to visit older people in nursing or care homes, as part of a daily or weekly routine. However, the Better Regulation Task Force, a government body, warned that vital care services were being withdrawn precisely because of inflexible ‘no touch’ rules stopping volunteers taking older and disabled people to the bathroom or feeding them.* (#ulink_7f6d01c0-2a8e-5102-895c-808f715e744e) Indeed, volunteers, often in their sixties or seventies themselves, the so-called Third Agers, are now often subjected to the same training requirements for a few hours of help as professional care workers. The report was the work of a committee chaired by Sukhvinder Stubbs, who argued that small local agencies who work with volunteers are being affected by ‘silly regulation, bonkers regulation’. But the issue is really about the level of risk service users want to accept-for instance, the extent to which they want to be able to choose the temperature of their own bath water.
In the present climate we are automatically suspicious of people wanting to visit nursing homes and care homes on a casual, uninvited basis. Who are they? Are they would-be abusers? Are they after the older people’s money? Yet this attitude of mistrust, and the now ubiquitous fear of risk, may well be leading to a greater degree of isolation for residents. The more we close off institutions, the less we know what is going on within them, the easier it is for abuse to take place and for the residents to feel isolated, hopeless, and forgotten. Some system whereby lonely older people get visited on a regular basis needs to be taken up by a whole variety of organizations, from schools and colleges to churches and mosques, from Townswomen’s Guilds to Working Men’s Clubs. This sense of isolation, and the fear that taking an interest in older people will be seen as perverse, must stop.
A few schemes exist, such as the excellent British Red Cross’s Home from Hospital scheme, which has some 55 initiatives operating nationwide, but many more are needed. The Red Cross model gets round the issue of strangers coming in to people’s homes because the volunteers are trained and supported and the service is paid for by local social service departments. This model of supported, trained volunteers who do it because they love it, supported by professional volunteer co-ordinators and a serious, respected organization like the Red Cross, gives older people the confidence to use the service, gives volunteers the feeling that they will not be rejected by the people they visit, since the Red Cross badge will be seen as a mark of quality and safety, and makes the system run as a truly voluntary service with rigorous quality and safety checks.* (#ulink_006242bc-d316-5bd9-9885-a86e46685a6c) It is this kind of service that we need to see nationwide, with an expectation that most of us, if not in need of such support ourselves, should be taking part in providing it under the auspices of a respected, sensible organization. Such a model of practical help combined with care and companionship would make all the difference to the isolation and fear felt by many older people.
Care Workers
Another enormous issue is one that will run throughout this book: the low status, low pay, and generally poor conditions and training of those who provide care for the elderly and other vulnerable groups. Over the last thirty years or more we have seen the professionalization of nursing. Nurses are now university graduates whose training has made them technically very proficient. At the same time, they are often unskilled in basic hands-on procedures, which are increasingly undertaken by care assistants whose training is often minimal and whose security of tenure, and relationship with other members of staff, tends to be poor.
This is a complex issue. Originally, health professionals–particularly nurses–had their hierarchy modelled on the military. After the Second World War nurses came to see themselves as being on an equal footing with doctors. The result has been that nurses’ status has risen. The former slave labour demanded of student nurses has, by and large, disappeared, and student nurses are now spending a great deal more time actually studying. There has, however, been a downside to this. Nurses no longer provide the discipline and structure of a ward or a hospital in the way that they used to do; in addition, routine tasks such as emptying bed pans, giving patients their meals, or turning them and making them comfortable in bed has been handed ‘down’ to care assistants. Nurses are now too expensive a resource to be allowed to feed patients, make beds, or plump up pillows and are too busy giving drugs and injections to empty bedpans. Nor have they been trained to talk to patients and find out what is really worrying or concerning them.
All this is a cause for deep concern, because so many patients will be older people whose recovery rate will be slower than that of younger people and who will inevitably be worried about what will happen to them when they leave hospital. Many will not be fit to go home. Many will be classed as ‘bed blockers’, as if it were their fault that they have nowhere to go and not that of the system that has failed them by not supplying enough nursing home and care home beds. Nurses could be the ones who listen to the fears of elderly patients, who reassure and comfort, who try to speed up social services, who use their position to get things done–and often they are. But because they have so much less hands-on experience than in former times, because they have not been routinely talking to their older patients as they help them eat, or change, or wash, or make their beds, they often do not have the closeness, the intimacy–in its true sense–with their patients that could be used to allay some of these fears.
The people who are currently performing the most intimate tasks for the patients, most of whom are old, are the care assistants. However, they do not have the status to allow them to tell relatives and social workers what is worrying a patient. It used to be said that the people who knew most about what patients were really feeling were not the nurses at all but the cleaning staff, who would chat to patients while they mopped round their beds. The gradual contracting-out of cleaning services has removed even this degree of contact. The people who are left to hear the patients’ stories are very often the care assistants. Yet many of them are largely untrained. National Vocational Qualifications are increasingly common, and many hospitals, care homes, and nursing homes encourage their care assistants to take those exams. But not all hospitals pay for the training or allow staff time off, and many do not offer more pay when a qualification has been gained. If care assistants were actively encouraged to study for NVQs and then, where appropriate, to move on to more advanced qualifications, the whole atmosphere might change. Care assistants would then be seen as embryonic nurses rather than skivvies. Though this happens to some extent with the skills ladder the NHS has in place, there seems to be a remarkable amount of resistance to letting people through the various ‘glass ceilings’ and allowing them to move from care assistant to nurse, and from nurse to manager.
Transferring such a scenario into the main care sector for older people, nursing homes and care homes, where there will probably be only one qualified nurse on duty, would similarly have a transformative effect on care assistants. They would no longer be seen as short-term employees doing dirty work for little money and no emotional and ‘respect’ reward, but people who may go into nursing eventually or who may choose to remain as care assistants, at the top of that particular tree, with all its attendant qualifications and respect. The government has set itself the target of half of all care home staff having reached NVQ level 2 by the year 2005. It is pretty unlikely that the target will be reached, but the government’s intentions are good, and grants given to care home owners to help them pay for courses and study leave would speed up the process. It is, after all, well attested that training care home staff can reduce the amount of abuse, both intentional and unintentional, quite considerably.
