The Moral State We’re In

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.*

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.*

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* 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* 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.*

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.