The Moral State We’re In. Julia Neuberger
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journalist, wrote a piece in Community Care back in 1998† about her mother, arguing that ‘the worst luck in this country is to be alive when old’. She said it even more strongly after the death of the only other Asian resident in the housing association block in Ealing, where she lives. Mrs Pal fell before she died and had to go into residential care. All the residents were Asian, and they sat ‘silently, eyes unseeing, as if they had already passed away’. Mrs Pal died after two weeks of this, and Yasmin Alibhai-Brown’s mother will not forgive her son for putting her there, nor ‘this society for the way it treats old people so that they feel they have to oblige us by dying’.
Regulation of Care Homes and Nursing Homes
The issue of care assistants, and how we value and reward them is one illustration of where we have got it wrong with regard to who most deserves respect in our society. Another area that has impacted heavily on older people has been in the attempts by government to make a difference to older people’s welfare, encouraged to some considerable extent by the two main organizations representing the interests of older people, Help the Aged and Age Concern. This has resulted in regulations requiring certain standards of provision within care and nursing homes, particularly the size of rooms.
Of course, this was all very well intentioned. There were many homes in which people were crammed two, three, and four together into one not very large room. The idea that older people should share rooms in nursing and care homes is itself surprising, given that few of us share rooms with anyone other than spouses and partners at any other stage of our lives, except in childhood. There had, of course, been scandals surrounding care home owners trying to make additional money out of cramming people in, so it is hardly surprising that Help the Aged, itself formerly a provider of nursing and care home accommodation, and Age Concern should have raised this as a matter of concern. The desire to keep prices down-understandable though it may be-should not allow local authorities to get away with paying substandard fees for substandard accommodation. But the problem is that size of rooms, and facilities such as private bathrooms, important though they might be, are not all that is needed, and many smaller care and nursing homes have closed because the costs of alterations required, and the complexities of providing accommodation for residents whilst work was being carried out, were just too much. It is of course desirable that everyone should have their own room. Most of us would contemplate nothing less. It is equally desirable for everyone to have their own bathroom. But there are two major factors that those who drafted the regulations, and those who campaigned for them, did not fully consider. The first is that for many confused older people, being confined to their own rooms all day does not provide the stimulation they might need, nor will it delay the deterioration process. They need company and activity–the social buzz that being on their own watching a television in their room cannot provide. Secondly, though many of the older care homes were not up to modern standards, some of them provided a personal quality of care that was of infinitely greater importance than a room of one’s own, particularly for those who were confused and frightened. In all this, there has been a confusion between physical standards–space and the need for basic privacy–and the quality of care. Though better accommodation is undoubtedly desirable, tender care, with well supervised and well supported care assistants, has an enormous amount to recommend it. Yet again, our desire to regulate takes precedence over what really matters: the quality of care. Old-fashioned premises where the staff are well supervised and truly committed to what they do might well be preferable to a spanking new facility, gleaming bright, but with no soul. You cannot legislate for soul. But you can make palliative care more available to many older people.
Palliative Care
Older people who are not dying of cancer, motor neurone disease, or AIDS/HIV often fail to benefit from Britain’s superb palliative care services. Yet death comes in many ways: we may die of heart disease, be it congestive heart failure or simply a fatal coronary infarct. We may die after being disabled in a severe way by a stroke, or by end-stage renal disease. We may have chronic obstructive pulmonary disease. We may have dementia. We may die of a single cause, or a combination of many, or we may simply die of old age. Yet the palliative care services are often not there for us, and whether we get access to them depends on the area in which we live.
With little trouble, and at relatively little cost, it should be possible to provide palliative care to people who are dying of whatever condition, in whatever setting. People dying in a nursing home should still get the specialist care that they would have received had they still been in their own homes. People dying in a care home should be just as entitled to a visit from the palliative care team as those who are living with a son or a daughter. If we could ensure that, as well as providing proper palliative care for those who have the misfortune to be dying in an acute hospital, some part of the fear of dying might be assuaged. Some principles could be established covering, for instance, privacy, good physical care and proper pain relief, a guarantee of not dying alone, choice of place of death, treatment choices (advance directives again), and who should be present when death finally comes. These principles would provide a kind of guarantee of respect for the person’s dignity and autonomy, as well as guaranteeing diminution of suffering, and respect for their autonomy, so that, insofar as is possible, people get the services they want when they are dying.
In the working paper of the health and social services group for Age Concern’s Millennium Debate of the Age,* which I chaired in the late 1990s, we identified twelve principles of a good death:
To know when death is coming and to understand what can be expected
To be able to retain control of what happens
To be afforded dignity and privacy
To have control over pain relief and other symptom control
To have choice and control over where death occurs (at home or elsewhere)
To have access to information and expertise of whatever kind is necessary
To have access to any spiritual or emotional support required
To have access to hospice care in any location, not only in hospital
To have control over who is present and who shares the end
To be able to issue advance directives which ensure wishes are respected
To have time to say goodbye, and control over other aspects of timing
To be able to leave when it is time to go, and not have life prolonged pointlessly
All these principles would make a real difference if they were generally implemented. In practice, it would not always be possible to carry out all of them for every person. But the hope and expectation that they would be put into practice would help dissipate the fear of dying.
Conclusions
It is no surprise that many older people fear the future. For many of them, the future is simply frightening, and current policies have done little to alleviate that fear, whatever we may say, or whatever Help the Aged and Age Concern try to argue. The situation is not good enough. Euthanasia is not the answer. Striving less hard to keep people alive, along with advance directives, may help a few. But they will not help the majority. So various things remain to be done.
First, there is clearly a need for an older people’s movement above and beyond what Help the Aged and Age Concern now do, a movement of older people that fights hard and dirty, and that makes government wake up to what older people are feeling. There is a real need for a grey-power movement to point out to government that the present settlement is neither fair nor acceptable and remind it of older people’s voting power. To some extent, this exists in the shape of the National Pensioners’ Convention and the redoubtable Rodney Bickerstaffe. But this movement needs to get much bigger and much angrier, and to show government that it really means business by being prepared to play dirty. Older people must complain.
Second,