The Moral State We’re In

Providing that hands-on, day-to-day care is hard work and can lead to stress and frustration. It is no surprise that nurses, who cost the system a lot to train, do not want to wipe bottoms and change beds, or feed patients or help them wash. Until care assistants have real status, recognizing them as the people who actually provide this vital and difficult hands-on care, they will not–as a group–necessarily give of their best. Until they are trained properly and achieve professional recognition there will always be the risk of deficient care, even abuse, from care assistants who have no vocation or professional dedication and who have only taken on the job because they can get no other work.

Example after example of poor care, often not abusive as such but insensitive and uncaring, emerges from CHI reports, from local newspapers, and from anecdotes from friends and relatives. And these must be just the tip of the iceberg. Typical is the case of a nursing home in East London which had a complaint against it upheld by the National Care Standards Commission because of the ‘unprofessional’ attitude shown towards a lady just minutes after her relative’s death. Care workers did not sympathize or help her come to terms with the news of her relative’s unexpected death (she had already complained about unexplained bruising on his arm). Instead, she was told that ‘there was not much point’ in an undertaker taking his body away that night because of the extra cost (of after-hours collection, presumably) and was told that his body would have to remain in the room he was sharing with another man–a piece of insensitivity about the effect on the other man which beggars belief.* (#ulink_226d9aae-e62d-5442-b887-236afc252aaf)

Insensitivity and uncaring attitudes. Yet something can be done about them, and care staff can be trained and encouraged to think differently, if employers make it worth their while. Care assistants should know that the ladder into nursing is available to them. Nurses, and their organizations, should celebrate the contribution care assistants make and welcome those who climb the ladder into nursing to join them. There has to be another way into nursing that does not require a university degree, and there has to be recognition that caring is of equal status with providing hi-tech interventions. Equally, care assistants will have to accept that they will be regulated and checked by the police for any record of abuse and that they will be expected to work in a care home or nursing home for a considerable period, rather than hopping from one agency to another.

These would be major changes. Care assistants have been appallingly badly treated. We have allowed our most vulnerable older people to be cared for by people to whom we do not show respect. The challenge is to pay care assistants properly, train them properly, and support them properly without the cost of care becoming so prohibitive that no one can afford it. Yet without this the existing situation will get worse. As Janet Street-Porter argued fiercely in her article entitled ‘I’ll do anything except go into a care home’: ‘The whole culture of care for the elderly gives me cause for concern. If we don’t value teachers, we insult carers. The pay is appalling, the job unattractive, the prospects pathetic.’* (#ulink_1e9baab6-a2c5-5416-a4eb-94f1a1294edf) Quite so. And it is our fault.

The fact that we think it acceptable to put our old people into care homes at all is another issue that needs consideration. Yasmin Alibhai-Brown, redoubtable campaigner on race issues and doughty journalist, wrote a piece in Community Care back in 1998

(#ulink_d9edb059-6f68-514f-898a-6350f02dc62d) 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,* (#ulink_db1aae11-cb12-5586-ad7f-30a2b34b1dcf) 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, old age itself needs redefining. This not only concerns retirement age–though it is clear that we will all have to work longer, and possibly differently, in order to afford our pensions and our end of life care. It also involves the recognition that most of us are at the peak of our powers in our forties and fifties and that it is perfectly sensible–indeed, the Americans already do it–for us to switch to different, less demanding, jobs when we reach our late sixties and seventies. Retirement and activity in older age needs rethinking, and government cannot rely on older people’s goodwill for much longer.

Very old people need to be assured that they will have proper care, properly funded, when they need it–even if they have to bear some of the cost themselves. They need to be reassured about what their liabilities might be. This means accepting that we will need to pool the risk for some of their care, and old people need to know that society accepts their care as an obligation, and also that they will not be abused in care homes, or indeed in their own homes.

Care workers need to be treated with greater respect, receive more and better training, and to be paid more. It should be deemed just as honourable to be a care worker looking after older people as it is to be a doctor or nurse looking after children–and there may need to be new financial and status rewards to ensure this.

Older people need to know that they can control their own death when the time comes, and to be able to die at home, with all the information and support they require, if that is what they want. They need to know that they can make advance directives so that, if they are not able to make decisions themselves at the time, their wishes will still be carried out.

Older people need to know that there will be no discrimination against them in the provision of healthcare, that they will get what others get, subject to whether it seems sensible to them and their clinicians, and that they will be consulted every step of the way.

Finally, older people have a right to expect kindness and care from the rest of us–there are so many older people, and soon we will be amongst them. It should be part of what is expected of every citizen that, whilst he or she is able, they visit and generally look out for older people who are their neighbours.

* (#ulink_a9446c5d-5a49-50e3-8004-865125ef157a) ‘The Bremen Town Musicians’ (with thanks to the Brothers Grimm).

* (#ulink_fe5c9770-6a26-5e1f-ac03-3017bbdac4b2)Population Trends (summer 2004), no. 116.

† (#ulink_fe5c9770-6a26-5e1f-ac03-3017bbdac4b2) Department of Health, Departmental Report, 2004.

* (#ulink_60f03e53-2548-5016-99ae-f6431e26e0f8) N Salari, ‘Are health and care services ready for a surge in Alzheimer’s

† (#ulink_01d658b7-ca11-5a33-bd4a-d8fb8ce4c3d8) N. Pettinger, ‘Age-old myths’, HSJ (27 August 1998).

* (#ulink_fbc0601c-07b5-52ed-b319-3c1a8b5e4677)Simplicity, Security and Choice: Working and saving for retirement, Department of Work and Pensions (December 2002).

* (#ulink_4c5ca753-9856-5989-b3cb-2919b33cf873) Ben Richardson, BBC News Online (16 June 2004).

† (#ulink_4c5ca753-9856-5989-b3cb-2919b33cf873) N. Gillies and N. MacErlean, ‘Tell me the old, old story’, The Guardian (23 July 2000).

‡ (#ulink_4c5ca753-9856-5989-b3cb-2919b33cf873) H. Mulholland. ‘Fifty reasons to be cheerful’, The Guardian (3 April 2000).

* (#ulink_9bd8d58d-ac5c-5394-9264-4018a2737dd7) Keizer, B. (1997).

* (#ulink_141f56b8-789c-5e01-a9dc-4d21d9b9af9d) Age Concern Fact Sheet 10, Local Authority Charging Procedures for Care Homes, issued April 2004, updated June 2004.

* (#ulink_192df2d7-89c8-5d40-8d34-2cda77e0eec0) Archbishop Rowan Williams, as quoted by the Independent Catholic News (2 June 2003).

* (#ulink_7c99d9d8-1732-5600-a6f0-21192efe1a79) Kathryn Wilmington, Policy Officer, Community, Health and Social Care (6 June 2003).

† (#ulink_1a38b2ca-3182-57ba-b172-deb8fc37fbc9) From the website of the National Council for Hospice and Specialist Palliative Care (10 May 2004).

* (#ulink_3956a95f-0996-5b47-aa1c-cc7423f48d9f) Liz Sayce, Director of Policy and Communications, DRC (6 June 2003).