The Moral State We’re In
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.
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.*
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.’* 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† 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, 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.
* ‘The Bremen Town Musicians’ (with thanks to the Brothers Grimm).
* Population Trends (summer 2004), no. 116.
† Department of Health, Departmental Report, 2004.
* N Salari, ‘Are health and care services ready for a surge in Alzheimer’s
† N. Pettinger, ‘Age-old myths’, HSJ (27 August 1998).
* Simplicity, Security and Choice: Working and saving for retirement, Department of Work and Pensions (December 2002).
* Ben Richardson, BBC News Online (16 June 2004).
† N. Gillies and N. MacErlean, ‘Tell me the old, old story’, The Guardian (23 July 2000).
‡ H. Mulholland. ‘Fifty reasons to be cheerful’, The Guardian (3 April 2000).
* Keizer, B. (1997).
* Age Concern Fact Sheet 10, Local Authority Charging Procedures for Care Homes, issued April 2004, updated June 2004.
* Archbishop Rowan Williams, as quoted by the Independent Catholic News (2 June 2003).
* Kathryn Wilmington, Policy Officer, Community, Health and Social Care (6 June 2003).
† From the website of the National Council for Hospice and Specialist Palliative Care (10 May 2004).
* Liz Sayce, Director of Policy and Communications, DRC (6 June 2003).
† Beverley Malone, RCN General Secretary.
* Jamie Doward, ‘I don’t want to plan my death…’, The Observer (19 September 2004).
* GMC News (December 1992).
* E. Roberts, J. Robinson, and L. Seymour, Old Habits Die Hard–Tackling Age Discrimination in Health and Social Care (King’s Fund, 2002).
* Seshamani, M. and Gray, A. (2004).
* Williams, A. (1997).
* Grimley Evans, J. (1997).
* Chris Price, ‘Who Pays for Grandma?’ The Stakeholder (1999); the Royal Commission on Long-Term Care (1999).
* Liz Phillips, ‘Does nobody care?’, Daily Mail (7 July 2004).
* Gary Younge, ‘Grey power bites back’, The Guardian (5 June 2000).
† ‘The battle for the older voter’, The Economist (18 September 2004), 37.
* Peter Riddell, ‘Getting the Grey Vote’, Parliamentary Monitor (November 2004).
† Responding to Elder Abuse (Community and District Nursing Association, 2004).
‡ Liz Gill, ‘Abuse is a wicked secret’, The Times (1 January 2004).
* ‘Who Cares for Granny?’, Channel Five, a MacIntyre UK Undercover documentary (October 2003).
* Jenkins, G., Asif, Z., Bennett, G. (2000).
† Action on Elder Abuse press cuttings, April 2002–March 2003.
* Tony Robinson, ‘This shameful neglect’, Daily Mail (13 January 2004).
† Daily Express (5 November 2003).
‡ K. Leason, Community Care (6-12 November 2003).
* Sue Clough, Daily Telegraph (15 August and 9 September 2000).
* Yorkshire Post (5 June 2003).
† Evening Press, York (11 June 2003).
‡Yorkshire Post (11 June 2003).
§ ‘This is Lancashire’, BBC News (30 April 2004).
* Maureen Paton, ‘A veteran fights a new battle’, The Times (27 April 2004).
* CHI News (October 2003).
† ‘Not because they are old’: An Independent Inquiry into the Care of Older People on Acute Wards in General Hospitals (Health Advisory Service, 2000).
* Better Regulation Task Force, Bridging the Gap (2004).
* Melanie Henwood and Eileen Waddington, Home and Away: Home from Hospital and the British Red Cross, Progress and Prospects (2003).
* Wanstead and Woodford Guardian (20 November 2003).
* Janet Street-Porter, ‘I’ll do anything except go into a care home’, The Independent (6 February 2004).
† Yasmin Alibhai-Brown, ‘Age of Respect’, Community Care (10–16 December 1998).
* The Future of Health and Care of Older People: The Best is Yet to Come (Age Concern, 1999).
TWO THE MENTALLY ILL
In my years of chairing a large community and mental health trust in central London, Camden and Islington Community Health Services NHS Trust, I became sadder and sadder at what was happening to people with mental illness who accessed our services, and, still worse, to those who for some reason or other were not accessing the services they wanted or needed. I remember being taken to see the best of our then three main adult inpatient units. One of the (male) consultants said to me that in the first few weeks of being a trainee psychiatrist you cried and cried; if you did not do so, then you would be no use as a psychiatrist.
In some ways, the issue of mental health is at the heart of this book. For we are not–in the way we structure and think about the services we provide–kind. Kindness is not what we value most, nor does it drive the system. If it did, the services would look quite different and be far more responsive to what users say they want. We would be providing decent housing and trying to provide employment, or at least some kind of daytime activity that makes sense and has meaning; we would be helping with money, with food, with the normal things of life, with talking and engaging with the issues that those with mental illness say bother them. Instead, over centuries now, we have provided a service that is largely based on fear and containment, on a view that those with enduring mental illness are worthless and do not deserve the level of public expenditure that running a series of responsive high quality services would entail.