The Moral State We’re In
Julia Neuberger
A study of the moral state of the nation – the acid test of this being how we treat the weakest among us. Rabbi Julia Neuberger will assess the situation in the UK from her own unique viewpoint, and promises to draw some challenging and thought-provoking conclusions.Just as Will Hutton looked at the political landscape at a turning point in Britain, Rabbi Julia will take the moral temperature of the nation by looking at the ways in which we treat the weakest amongst us. The National Health Service, government pensions and asylum seekers all make daily headlines, and here is a writer with the moral authority and mastery of the necessary information to undertake this timely project.The way we treat the weak and vulnerable members of society has long been an established way to judge how civilised a society is. In this book, Julia will look at the extent to which the elderly are thought a burden, the way we care for the mentally ill, attitudes to asylum seekers, support for ex-offenders as well as the care of children and the future of society in the UK.Her straight-forward approach to what has elsewhere proven highly esoteric, is here written with ease and fluidity and with a style that is highly approachable for those interested in the state of their nation with purely social, rather than academic, motivations.With her uncomplicated but extremely intelligent and candid take on the issues that make daily headlines, and with Julia’s high media profile, this book is guaranteed to tap into the state of our nation.
THE MORAL STATE WE’RE IN
A MANIFESTO FOR A 21ST CENTURY SOCIETY
Julia Neuberger
CONTENTS
Introduction (#ub291a974-a8fc-5ca8-af88-07d637cc2452)
1 The Elderly (#u47a5260d-ae5d-5323-a591-2766cfbd9c47)
2 The Mentally Ill (#udadbde77-3147-5157-9e1a-ddef837df2fa)
3 The Young and Vulnerable (#litres_trial_promo)
4 The Prison System (#litres_trial_promo)
5 The Outsider (#litres_trial_promo)
Bibliography (#litres_trial_promo)
Index (#litres_trial_promo)
Acknowledgements (#litres_trial_promo)
Copyright
About the Publisher (#litres_trial_promo)
INTRODUCTION (#u65628d9d-9694-53db-a746-b63e5f381da6)
In March 2004, a wonderful story appeared in The Guardian headed: ‘Q. How many care workers does it take to change a light bulb? A. Ask a risk assessor.’* (#ulink_25392752-858f-522f-9441-d9391d67b00b)
The Department of Health had devised an advertising campaign to attract people into becoming care workers that showed a care worker reaching up to put a new bulb in for an old man–without any obvious assistance. The advertisement read: ‘If you could do the small things that make a big difference, you could earn a living in social care.’ But many care workers say they are not allowed to change light bulbs–not on their own, at least. One local authority said it might take four people to do it: one to hold the ladder, one to turn off the electricity at the mains, one to stay with the old person, and one to change the light bulb. This is to comply with both Health and Safety rules and electrical safety legislation, but it obviously leads to some considerable difficulties. It is this kind of risk aversion–extreme though this case is–that this book is about: rules and regulations, well founded, well meant, even theoretically sensible, that yet lead to an extraordinary situation in which a care worker cannot change a light bulb for fear of the consequences, and which makes the lives of vulnerable people more difficult than they need be.
This is an extreme example, but it is not unusual. For six years I was Chief Executive of the King’s Fund, a charity devoted to the health and healthcare of Londoners, with a watching brief for the National Health Service as well. During that time–and indeed before–I have watched bemused as we have apparently become less and less caring for, or even aware of the suffering of, the most vulnerable in our society. This is not to say that there are not hundreds of thousands of people who, every day, carry out acts of kindness for a variety of people in trouble. Nor is it to say that we are bad people, or uncaring–though we may be–or insensitive to the needs of others, or incompetent, or somehow unaware in other ways. Nor is it to argue, as religious leaders have often done, that we have become selfish–though that, too, may be partially true. I believe that something else is going on: a complex pattern of interacting ideas, events, the Zeitgeist, and personal human attitudes that has somehow allowed us to reach this position. In this book I hope to tease out some of the contributing factors by examining what has happened to some of the most vulnerable groups in our society–the elderly, the mentally ill, children in care, offenders, and asylum seekers.
As I began the thinking for this book, I realized that I was not alone in my concerns. I was astounded by the number of people of all political persuasions, all backgrounds, classes, and creeds, who told me I needed to write it, that it was somehow important. They were not necessarily going to agree with me, but they believed we needed to ask ourselves some questions, and that the stories in our daily newspapers, the material with which we argued over politics–insofar as anyone did any more–or social issues or economics suggested some deep-seated problems in thinking about how we might sort our society out.
Concerns varied. There was a passionate concern about how we treat the elderly in our society, about the welfare of people with mental illness, and about what happens to children in care.
There was also a widely expressed view that our penal policy is a mess: we are putting more and more people into prison, but we have less and less idea about whether we are trying to punish, rehabilitate, contain, or simply forget about them.
Then there was a growing body of opinion that felt our policies towards asylum seekers were plain cruel, that if we could not sort out our immigration and appeals system then it was hardly fair to blame those who were trying to come to the UK, even if some were–to use the jargon–economic migrants rather than true refugees.
These are some of the issues that concern many of us–and may also touch us directly. The proper care of our elderly relatives is an issue that we all have to face at some time. Many of us know someone with mental health problems, and we may ourselves have had some period of depression or some other relatively minor mental illness and so will have seen first-hand something of what the system offers (or fails to offer) by way of help and support. Most of us will have read horrendous stories about children in care and what happens to them when they leave–we may even have experienced this ourselves. We may also have read about, or have first-hand experience of, ex-offenders, some of whom will have been in care and many of whom have mental health problems. And whilst most of us will not have direct experience of today’s asylum seekers, many of us may know someone whose family came to this country as refugees.
What kind of society is it that locks up those with mental illness in prisons, rather than placing them where they can get help and care, that fills them up with drugs but shows them little kindness?
What kind of society is it that allows our young care leavers to gain access to the criminal fraternity so easily and denies them the support of mentors and befrienders in their late teenage years and early adulthood?
What kind of society is it that makes so little effort regarding ex-offenders that many of them feel so unsupported that they fall back into offending for want of anything else to do?
What kind of society is it that locks up children from asylum-seeking families, that fails in its duty of kindness towards the stranger, and that fails to recognize the rights of children, who are in no way to blame for their lot?
And what kind of society is it that fails so lamentably to protect older people from abuse whilst also failing to offer proper long-term care for those who need it?
We have made it more difficult to help such people. Part of this book will examine why it is so hard for ordinary people to help those less fortunate than themselves–the kid in care, the old lady next door whose life is getting tough. For, as a result of scandals surrounding some of our institutions–for example in children’s homes, schools, and foster homes–we do not allow ordinary people to help. For instance, an obsession–not wholly misplaced–with sexual predators has made it necessary for anyone who works with children to undergo a police check. Until recently it also meant that a child in the care of foster parents could not spend a night with a friend unless the friend’s parents agreed to undergo police checks too. The need for school teachers and helpers to be checked for their past record also means that those who might be willing to help on an occasional basis must also be checked by police.
Such vigilance in itself may be no bad thing. But the fact that we have become so stringent in our requirements for checks on those who work or have any relationship with children means two things: first, that children themselves are encouraged to be suspicious of adults in a way that may be quite unhealthy, both for themselves and for society as a whole; second, that those who are inclined to look after a child or young person who is distressed–who is, for instance, lost, or is being attacked by older children–will be very nervous of getting involved. Suspicion of motives has forced some people, particularly men, to restrain ordinary common decency and kindness. Yet many of our most troubled young people–though by no means all–have no regular, stable male role model in their households. Add to that an ever-growing worry over paedophilia and you have a picture of a society that wants to protect children from potential attack but which may end up by destroying valuable relationships between young people and their elders, purely because fear of sexual attack takes precedence over a belief in ordinary common humanity. When photographs of children at nursery school cannot be taken without parental consent, for fear of pornographic use, we have a problem. When we are so suspicious of adults’ motives in wanting to help a child that one cannot help in a school–even one’s own children’s school–without a thorough and lengthy police check, we may have a legitimate point of concern, but we will deter all but the most determined helpers.
Our fears are not wholly unfounded. We have, in recent years, lived through the Soham murders and through a series of scandals surrounding children’s homes and special schools. In the USA, one smart California nursery was thought to be the centre of a wave of bizarre sexual and other attacks on small children. The Roman Catholic Church is still reeling from revelations about the number of attacks on young children by priests and from stories of violence and abuse by priests and nuns in Catholic-run children’s homes, about which senior church members knew and did nothing–or, worse, simply moved the offending priests or nuns on and did nothing to protect the children or heal their wounds. Yet, for all that, such a level of protection of children will lead to them being unable to trust anyone. Anyone accused of an attack on children is likely to go underground. The situation may well arise in which those who want to help children whose own families may be the worst abusers, or children whom circumstances have let down in a big way through parental death or family breakdown, are deterred by the bureaucracy through which they have to go. It is as if we are trying to create a risk-free society, which we know in our heads and our hearts is impossible. The result is that we restrict and regulate, hoping to make terrible things impossible whilst knowing we cannot, and, in the process, deterring the willing and the kind.
Then there is the unwillingness of many nurses to do what they once did best–holding the hand of an elderly person and dispensing simple TLC–through fear of being accused of assault; or being unwilling to offer a dying person a drink in case they choke, thereby risking legal action against themselves or, more likely, the hospital. The bureaucracy involved in serious untoward incidents, as they are called, is now so enormous that many senior nurses spend huge amounts of their time in filling out forms, making a nonsense of their nursing and caring roles in an increasingly risk averse culture. Professionals have become polarized into those who do case management–including when things go wrong–and those, more junior, who do the actual caring. Because of the requirements of the Health and Safety Executive, nurses cannot even lift an elderly person who has fallen out of bed: they often have to be left until suitable hoists can be found.
None of these things is necessarily wrong in itself. But the cumulative effect of a risk-averse culture results in an erosion of simple human kindness. A nurse will put a line into an elderly person for drugs to be given intravenously, but she will not hold a hand or stroke an aching back. An ordinary decent man, in his thirties say, with energy and skills that could be put to good use working with young people, will give a charitable donation to Childline or to the National Society for the Prevention of Cruelty to Children, but is unlikely to sign up to a mentoring scheme that would give him regular contact with an individual disturbed and deprived 14-year-old boy: it is simply too much trouble to go through the checks. If the man is himself gay, then official doubt and suspicion will be all the greater. If he is heterosexual and wants to mentor a girl, yet again suspicions are aroused–and his computer will be checked for pornographic images.
Aversion to risk pushes out common sense, and the smallest of risks now takes precedence over what we used to call kindness and care. The result is that the kindness one sees in hospitals often comes from porters and care assistants rather than from senior staff. Similarly, kindness to people with severe mental health problems often comes more from the owners of the cafes in which they sit for much of the day, or from the staff in public libraries, than from the nurses and outreach workers who are in a position to really extend a hand. This is not because of ill will or lack of feeling but because the system is increasingly unwilling to allow nurses and carers to take on any risk. An arm around the shoulders might be thought to be common assault. An invitation to have a meal might be seen as some of kind of sexual lure. And so we reach a situation in which social care assistants are told that it will take four people to change a light bulb for one vulnerable old person, whilst one of the teachers’ unions has called for an end to school trips for fear of accidents after three children have died in recent years.* (#ulink_b438af1a-8885-5054-91fd-1be45e3a5ef0)
Risk aversion has made for part of the difficulty and has increased a natural human reluctance to get involved. That reluctance has been exacerbated by urban living. Many city dwellers lead isolated lives, in contrast to the sense of community still possible in rural or suburban areas, and have an unspoken, unofficial code of not interfering in each other’s lives. This means that those in trouble can become totally alienated. Around Christmas and New Year, when many of the regular support services close for ten days at a time, the needy can find themselves totally unsupported. No friends, no family-and the reluctance of strangers to get involved. Kindness is in very short supply.
That reluctance will grow unless we look carefully at why we have deliberately allowed this culture of risk aversion to grow, why we are so suspicious of sexual motives, and why we no longer trust the stranger. And this requires examining our own personal experiences. If we fall in the street, it is the stranger who picks us up and dusts us down. If we have a car crash, it is the stranger who calls the police and stays with us to give comfort. If we are mugged, it is the stranger who all too often gives us the wherewithal to get home. If we suddenly become distressed, or ill, or overcome with fatigue, it is often the stranger who carries our bags, asks if we are all right, and offers to take us to the Accident and Emergency Department of the local hospital. Of course there is always risk: the person who carries our bags home may proceed to burgle the house; the person who takes us to the emergency room after we have been raped may turn out to be the rapist. But these are exceptions. There are still people out there who give up their seats on the underground or the bus to older people. There are still people who pick you up and dust you down. And yet we are making it more difficult for such people to do good deeds. Why, as evidence grows that crime is down, are we ever more fearful, ever more timid?
To answer this, I think we have to look in detail at some of the major inquiries that have been carried out into abuses of the vulnerable. In each section of this book, I shall try to examine some of the reports, the newspaper stories, and the official responses to such inquiries looking for clues as to why we are increasingly reluctant to get involved and why that reluctance may have its root, at least in part, not only directly within ourselves, but also in the culture we have created for ourselves with the best of intentions: to protect the weak and to deter the aggressor.
Today, it seems we have a desire to do everything possible. We want to stretch the limits: cure the incurable, reach the unreachable, do the undoable, explore the inaccessible, travel to the most exotic and impossible places. Yet at the same time we have never been so internally reflective, so obsessed with ourselves and our feelings, so dedicated to understanding ourselves. Our gaze runs both to the furthest horizons and into the deepest recesses of ourselves. Yet by our desire to go to the extremes in medical treatments we often cause damage and bring suffering, as well as sometimes achieving miraculous cures. By our desire to go to the furthest reaches of the world we may cause environmental damage or destroy the lives of those we encounter. And, as we look deeper and deeper into ourselves, we lose the will to think beyond ourselves to others, lose the inclination to help others, to serve others, to work for others, to look into the middle or near distance. We fail to deal with what we find at our feet or in our communities.
This is, of course, a huge generalization. Yet our obsession with self–which may not necessarily be selfish but is perhaps self-indulgent–does lead to some strange behaviour. As the death of Princess Diana recedes into the middle distance, it is hard to remember the reaction many people had to it. Yet a walk through London’s parks in those days immediately after her death was a curious experience. All over, there were groups of people–largely women–sitting in small groups, often round a lighted candle, contemplating, reminiscing, remembering, memorializing. But they were not, after the first few minutes, thinking of Princess Diana. Their grief, though real and genuine at the time, was not truly about the death of the fairy princess. This was something quite different. They were remembering themselves, grieving for those they had not grieved for before, remembering mothers, fathers, siblings, even children, remembering the grandparents whose funerals they had not been allowed to go to. This was a sentimental wash of grief, hitherto unexpressed and even unrecognized. But the mood was not one of enormous sadness over Princess Diana’s death. The sadness was for them, and it played out as something truly self-indulgent. It also meant that those participating were looking inward, at themselves and their experiences, one of the curses of our age, rather than thinking about what outward action they might be taking to improve things for others worse off than themselves.
This, perhaps, has been the most dramatic recent example of group behaviour that caused a combined rush of sentimentality and genuine grief. Self-indulgence was combined with necessary grieving processes, sometimes much delayed. Yet the light was not shone externally. We were not looking to see who else might be suffering, or why. Instead, the light was directed inwardly, on ourselves. What we felt became what mattered. When the Queen did not come straight back to London from Scotland, we complained–irrespective of what her feelings might have been, or her desire to protect her two grandchildren. The Queen needed to be back at Buckingham Palace because we wanted her there. It was an astonishing example of the triumph of the group desire for personal gratification over common sense and understanding. Yet part of this desire to look inside ourselves is precisely what leads to that lack of a longer, more measured view. Though psychotherapy has brought great gains, it has encouraged an emphasis on personal priorities over those of the group; and whilst counselling has made a huge difference to many people with a variety of mental health problems, as a tool for everyday self-examination it can, at worst, lead to an inability to act.
What has happened might be argued to be an unfortunate confluence of events–or of intellectual and emotional pressures. At the same time that individualism became paramount, the then Prime Minister, Mrs (now Lady) Thatcher was alleged to have declared that there was no such thing as society and consumerism hit its heights, making the consumer king, rather than the citizen. Concurrently, the obsession with introspection grew in intensity, combined with a political and philosophical view that the individual should control what happened to him or her. The combination of all these factors led to a distaste for looking at the welfare of society as a whole. As a philosophy, utilitarianism–the doctrine that the correct course of action consists in the greatest good for the greatest number–was held in severe disrepute. Individual endeavour was what was needed. Utilitarianism might deter the huge efforts, for huge gains, of the talented entrepreneur. Society looked less at the welfare of the whole and more at the welfare of the individual, whilst the intervention of the state was seen to be less than desirable, and often less than benevolent to boot. In addition, it was perhaps inevitable that a utilitarian state found it difficult to deal with minorities of whatever kind since it was predicated on the idea of a one-size-fits-all approach to the world. There was little appreciation that minorities might choose not to fit, something that needs to be remembered when ideas about multiculturalism are becoming unfashionable and the opposing idea that we should all comply with something uniquely British is growing again.
This contrasts curiously with a strongly held belief in the values of the National Health Service, the only truly universal service in the UK, used by everyone. The NHS was predicated originally on the idea that the best possible care would be provided for the greatest number of people. It encapsulated utilitarianism at its height, in an immediately post-war world in which having a population fit enough to work well to rebuild Britain was a priority. The original view was that universal health care would lead to a country in which everyone would be healthy and less state care would be necessary. It did not work out like that; indeed, pressures on costs have continued throughout the history of the service. The NHS expressed a philosophy–these days a series of values which do not wholly fit together–about the obligation of society to look after the sick and the needy. We pool the risk, and we share the care and the responsibility. Despite worries about quality and standards, and worries as to whether the service will be there for us when we need it most, the NHS is still highly trusted and much loved, even though there are concerns about its ability to provide a service fit for the new millennium. The welfare state may have its difficulties, but the UK population still believes in it. The way it works may change: there needs to be greater choice, greater acknowledgement of diversity. But by providing health services relatively cheaply and efficiently to the whole population, the NHS is part of the glue that holds British society together.
For we are individuals now. We demand things. We go for the personal. We understand our own needs. The idea that we might not be able to have what we believe we want and need is anathema to us. We have become demanders, not citizens; we look to ourselves rather than to society as a whole. This tendency is not new, but it has acquired far greater weight. The words so often uttered, particularly by elderly people, until just a few years ago, that ‘I have had my turn, it’s someone else’s go now’ are becoming rare. We see no need to moderate our demands. We see no reason to say that we have had our share. It is no longer about our fair share, but instead about when we feel-as autonomous individuals-that we have had enough.
The idea of an obligation to society, beyond the demands we ourselves wish to make, has become unfashionable. Utilitarianism is out of the window, as is mutualism. We are into understanding ourselves, into self-improvement, into improving our homes, our looks, our minds. Our view of faith is also increasingly individualistic. We choose the elements of faith that suit us. Individual salvation is part of the appeal of the evangelical movement. Personal salvation is the carrot held out. But the requirements which our faiths put upon us to consider others may get less than their fair expression. Despite all the surveys demonstrating widespread belief in God, despite the huge readership of religious books and the increasing attendance at evangelical churches, the idea of social solidarity-about evening up the inequalities, about making a difference to groups or individuals who suffer-has taken a battering.
This book seeks to examine some of these issues. It does not attempt to be a philosophical work, nor a work of political theory. Rather, it is an attempt to show the ordinary reader where we have got to with our system of care for the less fortunate, and why, and to examine whether there are things we can do to improve it. Though the welfare state will be seen by some as being critiqued in the book, I am a profound believer in its values. But I also believe that, in the light of social change and huge increases in wealth and expectations, we will need to reassess what we can reasonably expect to provide for everyone. Throughout my adult life, we have tinkered with the welfare state at the edges, be it in changing the provision for the very elderly–the greatest consumers of the welfare state’s provision–or in how we provide health care. The question that arises is whether such tinkering has gone on long enough and whether we might now need to rethink some aspects of the welfare state and its basic value system as we assess what we can and should do for the most unfortunate.
This is both a political and an ethical issue. In a society where voting figures are reducing and where trust in politicians is at an all-time low, reassessing what we provide for the most disadvantaged is difficult to do. What we have is a failure of trust combined with an aversion to risk: those who work in our health and welfare services do not trust the politicians not to blame them when things go wrong. And we have a society that thinks politicians lie when they promise various services for all of us, including the most disadvantaged. Improvement in education? Show me. More higher education? Where is it, and why have I got to pay for it? Yet trust is essential if we are to value our services, and risk aversion will make for bad services, where no one will do what seems natural and kind in case they get accused of behaving improperly or riskily. We look at ourselves and make our demands. But we fail to look out at others. Our sphere of endeavour is both vast–we see the world and beyond as never before–and tiny, as we sit glued to our television screens and fail to go out of our front doors.
I believe we have reached a stage where trust is under threat, where politicians–often unfairly–are regarded as being only out for their own ends. Yet we cannot just turn our backs. If we want a society where people feel that fairness is part of the ethos, we need to be seen to be involved with our politicians and thinking about our society. We cannot just let our concepts of fairness and mutuality go, and then complain. If we are too individualistic, then we will suffer, for our happiness, as Richard Layard argues so cogently,* (#ulink_85edb5d9-a835-5f5d-a14d-442501482afb) will suffer, but so will our sense of belonging.
Ultimately, this is a book about who belongs to our society and how we regard them. It is about insiders and outsiders, the trusted and the distrusted. If we recognize mutual obligations, how far does that mutuality extend? Who is ‘us’, and to whom can we legitimately say we have no obligation? If we only look to ourselves, we narrow our field of vision and in the end become automata: selfish, self-obsessed, habitually shirking our responsibilities. If we only take the longest view, we somehow forgive ourselves for not noticing what is under our feet or in the next street. But both the longest and the nearest gaze negate the need for trust. It is in the middle distance–amongst our neighbours, our police, our fellow citizens, our politicians–that trust can be found and where debate about making the world a better place can effectively take place. Escaping inside will simply negate our experience of friends and colleagues. Escaping to the ends of the earth will bring excitement but no permanent gain. The issues we need to grapple with are in the here and now, in our cities, towns, and families. Unless we rethink our social obligations and reassess the issue of trust, we will become even more cynical, even more atomistic, even more individualistic–and there will then really be no such thing as society.
If I am not for myself, who will be for me? And if I am only for myself, what am I? And if not now, when?
(Mishnah, Ethics of the Fathers, 1: 14)
* (#ulink_dfb5b06e-6989-5385-a6f3-d21f803a68ab) Article by David Brindle, The Guardian (27 March 2004).
* (#ulink_bbc506f3-7ba7-5989-83fd-f5331485cd3a)Evening Standard (19 March 2004).
* (#ulink_1330de3d-7fc3-5c1f-b29c-4a2d5deb28f1) Richard Layard, Happiness: Lessons from a New Science (2005).
ONE THE ELDERLY (#u65628d9d-9694-53db-a746-b63e5f381da6)
Once upon a time there was an old donkey who had worked for the same owner for many years from being a very young and energetic donkey. One day he saw his master talking to the local butcher and that he was eyeing him up and down. He thought he knew what that meant–that they were going to make him into cat’s meat. He wasn’t having any of that. So that very night he kicked the stable door down and escaped.
Whilst recovering from his exertion in a field full of thistles, which he munched his way through, he thought what to do. He would become a musician in the famous city of Bremen, not too far away. That decided, next morning, with a belly full of the best thistles that ever grew in a cruel farmer’s field, he set out down the Bremen road.
He had not gone very far when he met an old dog lying panting in the road. He asked him what was wrong, for the dog was distressed, with obviously sore paws. The dog replied that he was an elderly dog who had served his master well for eleven years, but, as he got older and more rheumatic, he could not chase and round up the deer as once he had. And so his master was going to have him put down. They both agreed that this was appalling, and then the donkey offered the dog the chance to join him and become a town musician in Bremen along with him.
So they went on together. Soon they tripped over an elderly cat lying in the road with sore paws, her claws split. She was panting. They asked her to tell them her story. She explained she had been a fine fit young cat, a great mouser, and very popular and much loved by her mistress. But now that she was old and tired, and liked to sit and dream by the fire, her mistress thought she was useless and not worth feeding. So she threatened to drown her. The cat heard this and ran away from the house where she had once been so happy. Then she had stopped, thinking that there was no easy way for her to survive. The donkey and the dog were very sympathetic. They said the same thing had happened to them. So they asked her if she would like to join them on the way to Bremen, since with her fine singing voice she could easily become a town musician.
And so they carried on together. As it was nearing nightfall, they saw a cock hopping towards them, making the most terrible noise. They asked the cock what was the matter. He replied that he was getting old and he had heard his master say that he was not much use any more for waking up the farmyard and that a younger cock was needed for the task, as well as for impregnating the hens to ensure they laid enough to make a living for the farmer’s wife. But the worst thing had been hearing his master threaten to cook him up for the soup for Easter Sunday!
The donkey, the dog, and the cat were all very sympathetic. They invited the cock to join them in their journey to Bremen, and then to become a town musician with them. And so he cheered up, and went with them. And they journeyed on till nightfall, when they stopped in a forest and went to sleep, though it was cold and they were very hungry.
But then they saw a light a long way off. The cat cheered up. It must be a house and she could sit warm and snug by the hearth and think her old cat’s thoughts. They decided to go towards the light. When they got there they found a pretty cottage, but it was full of robbers eating a huge meal around the table. They looked at each other. Then the dog jumped on the donkey’s back, the cat on the dog and the cock on the cat, and they looked into the window and made the most terrible noise. The robbers were terrified and ran away into the forest. The animals sat down round the table, had a great meal, and then went to sleep in a cosy cottage that seemed just right for them.
But the robbers began to think they had been silly to run away. They thought it could only have been a group of animals who had found them. So they moved nearer. The chief robber told the younger ones to go into the cottage. All the animals were asleep, and he thought it was safe to attack the sleepers, kill them and take back the cottage–to which, of course, he felt entitled.
But the cat could hear in her sleep, old though she was, and she woke up, and as the robber passed she scratched him viciously with her claws. As he ran from what he thought was a knife, the dog bit into his leg and would not let him go. He wrenched himself away and, as he ran, the donkey lashed out at him with a hoof, and then, for good measure, as he began to get up some speed, the cock swooped down and pecked at his face and ears. He was terrified; the people in the cottage were all armed. The robbers would have to give up and go far far away.
And the animals lived there happily in retirement ever after.* (#ulink_1175aa65-c276-5511-9173-0556fbfd96fc)
In the week before Christmas 2003, a case hit the headlines in all the papers entitled variously: ‘Betrayed’, or’ Frozen to death’, or, in The Guardian, ‘Cold and Old’. An elderly husband and wife, who had lived in the same house in London for 63 years, had died at the ages of 89 (of emphysema and hypothermia) and 86 (of a heart attack) respectively. No real surprises here, except their gas supply had been cut off for non-payment of bills. Yet they were not poor. There was £1,400 in cash in their home and a further £19,000 in a building society account.
They were finding it harder and harder to cope, a nightmare that overtakes many older people and is feared by even more. They may not have Alzheimer’s disease, but at the end of their lives they often find it hard to organize things and get their paperwork sorted, to catch up with the bills and the personal administration, and to keep their affairs in order. Two of the commonest causes of winter deaths are, as we know all too well, heart and chest diseases. Yet the excuse used by British Gas for cutting off their gas supply but not alerting the local social services was the Data Protection Act–i.e. on privacy grounds. The Data Protection Act’s Information Commissioner responded immediately by saying that this was a nonsensical excuse, and there is no doubt that some considerable incompetence was involved. Yet the seriousness of the case lies in the fact that two perfectly innocent, old and frail people–hitherto just about coping with the vagaries of life in their own home–died because no one noticed that they were a bit confused.
This chapter discusses how we view older people, whether we treasure them or simply want them to die. It looks at whether older people can control their own deaths, or whether they are liable to be abused and neglected in their last months and days, and at the question of euthanasia and how we ration healthcare.
It also examines the poverty of many older people, and the general neglect they often experience within the health and social care system and asks: is this how we want our parents to be treated? Is this how we want to be treated ourselves? Has our aversion to risk made us mechanistic and unkind? Has government made a mistake in refusing to allow more funding for the care of older people in care homes and nursing homes?
Finally, it looks at the question of how older people have been slow to use their political muscle and whether that might change.
Poverty
As well as the difficulty of coping with personal administration, nightmarish though that may be, many old and frail people also have to cope with extreme poverty. Whilst the focus of much public policy in recent years has been on child poverty, poverty is still a major issue for many older people. This is especially true of what is described by the Faculty of Public Health as ‘fuel poverty’, which is where any household has to spend more than 10 per cent of its income on keeping warm. For older people, this is not uncommon: they need their houses to be warmer than younger people do, and often live in poorer quality housing than younger people. Though there are government programmes to address this, the ‘warm front’ programme, aimed at preventing some of the worst excesses of winter deaths by providing better insulation and heating, is only worth £400 million. But the £1.9 billion spent on winter fuel allowances may be a less than efficient way of tackling the problem. For many older people are still seriously poor. Inequality amongst retired people is even greater than amongst the working population. The top 20 per cent of pensioner couples have a retirement income averaging around £45,000 per annum, whilst a quarter of all pensioners–over two million people–live below the poverty line (£5,800 for a single person.) The Guardian, on the day of the particular story cited above, called for the Government to add to its target for the abolition of child poverty by 2020 a similar target for the abolition of older people’s poverty as well.
The Very Old and Frail
Terrible though the problem of poverty is for many older people, and disastrous though some parts of our pensions system have turned out to be, particularly for those whose company pensions have simply disappeared, the main focus of this chapter is not older people in general. For the majority of the relatively young ‘older people’-the Third Agers, up to 75 or 80-life tends to be quite pleasant, reasonably financially stable, and, until ill health sets in, fun. There is much to be written about this age group and its changing expectations, and our own, as working longer seems likely to be the norm in order to fund future pensions.
But for a particular group amongst the elderly, life is very different: the very old, the very frail, people who need continual care of one kind or another. Much of the media’s attention has focused either on older people who make up the bulk of patients in any NHS ward-especially those amongst them who do not need to be there and who are termed, unflatteringly and unfairly, bed blockers-or on those who have Alzheimer’s disease and other forms of dementia. But the majority of very frail older people are neither bed blockers nor people with dementia, yet they need our support and respect.
So who are they? There were some 737,000 people between the ages of 85 and 89 in the UK in mid 2002,* (#ulink_00347567-3858-5b19-b44a-dfe48e5bbe3c) and a further 387,000 aged 90 and over. That’s over a million people over 85, and growing. The total population of England and Wales is only expected to grow by 8 per cent between 1991 and 2031, whilst of those aged 85+ it will have grown by 138 per cent. So the so-called dependency ratio will escalate. By 2031 there will be 79 dependants for every 100 of working age. This is expensive, and new. It is costly for both pension provision and healthcare, for the over-85s already cost the health and community services five times as much as those aged 5-64. Some 10 per cent of all hospital and community health resources are spent on people of age 85 and over.
(#ulink_bfe6996c-e5fb-5c48-9938-e4c3cf9aa5a3) The impact on families will be huge. The State is unlikely to be able to provide the full costs of care. The implications for families, and for the individuals themselves, are colossal.
It is a vast change, and we have not kept pace with the changes it demands of us, either ethically or politically. The ‘time bomb’ argument was very fashionable in the late 1980s and the 1990s, and still rears its ugly head, despite the fact that people are now more worried by growing suspicion that our increasing longevity has only resulted in pushing the period of frailty to a later age. Indeed, it may be that by increasing our calendar age we are imposing upon ourselves a longer period of frailty and dependence than hitherto. We are certainly seeing an increase in the numbers of people with Alzheimer’s disease, and the Alzheimer’s Society suggests that there will be around 840,000 people with Alzheimer’s in the UK by 2010, rising to more than 1.5 million by 2050. This echoes US figures, where the Rush Institute for Healthy Aging claims that more than 13 million Americans will have Alzheimer’s by the middle of the 21st century.* (#ulink_913dbc0c-cee3-58ed-b8cb-2424f27f9c65)
cases?’ Community Care (2003).
Whilst demographic predictions have been wrong before, the increase is certainly taking place and the theory that longevity may not always give one a healthier old age is beginning to look worth examining. However, others argue that the high-dependency period, particularly in terms of NHS hospital use, has simply shifted to an older age and is still roughly parallel with previous experience, being the last three years of life at whatever age.
(#ulink_5904de96-4bd8-5faf-8c9f-70b437c0ba0f) But it also has to be said that since 1969 admissions of people over 64 to NHS beds has quadrupled, whilst for the rest of the population they have barely doubled. It is not clear how much of this is to do with more recent technology-cataract surgery and hip replacements, for instance-and how much to do with the longer term disabling conditions for which there is no ‘quick fix’.
There are also many who argue that concern about the ageing of our society carries heavy ideological baggage-precisely the people who believe we cannot afford welfare support for the frail and needy. If we have more elderly people, frailer and more dependent, then somehow we will have to provide welfare support for them if they cannot provide it for themselves; and that, for those who wish to draw back the provisions of the State, is a highly unsatisfactory situation.
This is perhaps best expressed by the author Phil Mullan in his excellent book The Imaginary Timebomb. Mullan argues that the preoccupation with ageing has little or nothing to do with demography in itself but is much more to do with ideology–in this case, the curbing of the welfare state. He also argues–as does Frank Furedi in his excellent introduction–that the ‘problematization’ of older people coincides with ‘the tendency to marginalize the elderly from the labour market and from society at large’. The real problem, according to this argument, is not that there are not enough younger people working to support a growing population of older people, but that older people still find it hard to find employment. In the late 1970s and early 1980s, the employment rate of older male workers declined sharply. These rates have improved slightly in recent years, but they are still below the employment rates seen in the 1960s.* (#ulink_e0254c0d-a75e-5f9f-9abc-832e69a84ad0)
The argument here is that it is the shortening of the period of working life that is likely to be the cause of difficulties, in financial terms, rather than demography per se. There is plenty of evidence to support this theory. The Chartered Institute of Personnel and Development (CIPD) surveyed its members, arguing that Europe’s population would age faster than almost anywhere in the world, and found that two out of every five workers felt they had been discriminated against on the basis of age. Older people are seen as doddery and out of touch, whilst the young are seen as immature and unreliable. In looking at the data, Patrick Grattan, Chief Executive of the Third Age Employment Network, identified the media, fast-moving information technology, financial services, and manufacturing as industries that have yet to embrace an equal age policy.* (#ulink_fb4a5174-9257-5d28-8ee2-7c36ed510776) Mike Saunders, the 66-year-old owner of an employment agency entitled Wrinklies Direct, argues that older people also sometimes lack the right attitude at interview, arguing that ‘They have to sell their experience; they have to stand up against the young and be counted.’ There is cynicism amongst employers, too. Older workers in traditional sectors like banking tend to have built up expensive employment rights, such as increments and pension entitlements. By making people redundant early, firms save themselves a lot of money.
(#ulink_90085437-8094-5c9c-adf9-99fcc1e6f73d) Nor are government schemes particularly effective: ‘New Deal 50+’, launched in 2000, is open only to those already on benefits, rather than to all those over 50 who are finding it hard to get new jobs.
(#ulink_387a07c4-6c36-5efc-b9ed-e29af5d931e1) Even more significantly, Mullan argues convincingly that the fear of the demographic time bomb, rather than its actuality, is what promotes insecurity and a lack of inter-generational trust. If older people cannot trust the next generation down to look after them when they are frail and dependent, an increasingly individuated way of caring for oneself will develop. Meanwhile, if the next generation down fears that the older generation will consume all the assets of the family or the state, then respect and care are likely also to be in short supply. This truly is a vicious circle, and Mullan is on to something when he points to the fear of the demographic time bomb as an example of the generalized lack of trust between individuals in our society, particularly between the generations.
So the responses to this apparent demographic threat are many and numerous. Some say that this supposed time bomb is not all it seems because the UK will be importing a huge amount of labour from overseas to carry out the caring jobs and to feed our economic growth. According to this argument, the panic is unreasonable, we should stop worrying and simply get on with providing better care for very frail older people. At the other extreme is the enormous change in attitude, both in younger and older people, towards the euthanasia argument.
Euthanasia/Assisted Dying
There is a view expressed by some that there is no need to have ‘useless’ old people around who can no longer make a contribution to society. Though no one is suggesting that they should be forced to die, there are some who think that it should be possible for them not to have to continue living if they do not wish to. These are people who might be said to be arguing for euthanasia on the grounds of age and uselessness.
At its most extreme, the ‘uselessness’ view is one that could be compared to that held by the Nazis about people with severe mental and physical disabilities. There was already a respectable view of ‘mercy killing’, as propounded by Ernst Haeckel (1834–1919), the scientist and philosopher. So when the Nazis came to power in Germany, they set up the General Foundation for Welfare and Institutional Care, or T-4 as it came to be known, made up of doctors and psychiatrists, and carried out 70,000 killings of men, women, and children in institutions before the programme was stopped as a result of protest, largely from clergymen.
Obviously, those who are in favour of euthanasia for older people have no desire to go that far. But in arguing that very frail older people are of no use to society they are going down that road, though they would naturally be appalled at the comparison. Their aim is to make it respectable for older people-particularly those who really are near the end of their lives, who are suffering, and whose continuing care is costing the health and social services considerable amounts of money and resources–to ask for euthanasia. In order for that to happen, it has to become morally acceptable to eliminate (with their consent) older people who cost the state too much to maintain.
Other countries have euthanasia, after all. In Holland some argue strongly in its favour, whilst others are far less happy about it. Bert Keizer, a physician in the Dutch state-run nursing home system who has written extensively about death and dying, argues that there is virtually no abuse of the system and that people themselves do genuinely ask to be put out of their misery.* (#ulink_0a4e15fb-5331-51ba-9643-77668b7c8273)
The Dutch Catholic Church tends to take a different view, claiming that children put pressure on their parents in order to inherit. It has to be emphasized, however, that, unlike in much of the UK (Scotland being the exception), nursing home care is free in Holland and there is little in the way of private-sector provision. So how strong is the pressure from children likely to be once elderly parents are ensconced in a free nursing home, when they have reached a stage where relatives can no longer manage to provide care at home?
In Britain, on the other hand, the bulk of nursing home care for older people is provided by the private sector and children may well see their parents’ nest egg, which they often regard as theirs by right, swallowed up in nursing home fees. Parents certainly have a strong desire to pass on their wealth and savings–and often the house they live in–to their children. The result is considerable anxiety about the lack of free provision and about the need to draw down on savings. Anyone who has capital of their own above £20,000 will be assessed as being able to pay the standard rate. In the case of a care home providing nursing care, this would be the fees less the contributions the NHS might make towards the cost of nursing care. Those whose capital is between £12, 250 and £20,000 will be expected to make some contribution from their capital on a sliding scale, until the capital goes down to £12,250. Pensions and provision for older people have become major political topics in Britain, as discussed below.* (#ulink_7d34661d-afee-5bc2-b5ad-aa437092a808)
Those in favour of euthanasia argue that it might be easier if older people, instead of costing the country so much, could simply ask to have themselves put quietly and painlessly to death before the money runs out. The argument is rarely spelled out that way. But remember the story of the dog, the cat, the donkey, and the cock at the beginning of this chapter. Their owners thought them useless and felt that it would be fine to finish them off. We are not the owners of our older people, but as a society we see them as a problem. Hence the political issue that has blown up over long-term care for older people, which the Labour government promised to sort out on coming to power in 1997. It soon realized that this was a truly difficult task because of the conflicting and complex moral and financial arguments. Are older people entitled to free care by virtue of being old? Or should they pay for their care on the grounds that it is an unreasonable burden to place on the younger people who will end up paying the bill? Should they, in fact, regard it as a normal part of the costs of life?
In this climate of concern about ageing and its costs, the Patient (Assisted Dying) Bill was introduced in Parliament in February 2003 by the cross-bencher peer Lord Joffe. As it did not have government support it had virtually no chance of becoming law. Nevertheless, it was seen as an opportunity to air, once again, the complex and varied views held by all kinds of people and organizations on the subject. It had its second reading, unopposed, in accordance with tradition, in June 2003. After that, significant changes were made to it, to deal with some of the objections. These reduced its scope in a variety of ways, including limiting application of the Bill to terminally ill patients and stating that in assisting someone to die the attending physician might only provide the means to end the person’s life, unless the latter was physically unable to do so, in which case the physician could become actively involved. The idea that the physician would only provide the wherewithal, rather than actually kill the person, had considerable attractions for some objectors to the original Bill, since it largely removed the great problem of doctors killing their patients, rather than attempting to heal them or temporarily alleviate their suffering. The changes also included additional safeguards, requiring a specialist to attend the patient to discuss the option of palliative care. After all this, and with these changes, the Bill was reintroduced as the Assisted Dying for the Terminally Ill Bill, in January 2004.
In March 2004, there was a second-reading debate in the Lords and the Bill was sent to a select committee, and it began to look as if it might become law. At that point, Lord Joffe suggested that the select committee might wish to consider the current experience of assisted dying in the Netherlands and Oregon, in particular whether vulnerable members of society had been put at risk and whether doctor/patient relationships had been adversely affected. He also suggested it would be worth examining whether palliative care could, in all cases, enable terminally ill patients to die with dignity and free from unnecessary suffering. He further asked for the committee to look at whether recent polls showing that 80 per cent of the public supported assisted dying reflected public opinion accurately. Finally, the committee was to examine whether the safeguards contained in the Bill to protect vulnerable members of society were adequate and, if not, what further measures might be necessary. The Joint Committee on Human Rights, in its report on 23 March 2003, was of the view that they were, but the Bill’s opponents were not persuaded.
The aim of the Bill was to enable a competent adult, suffering unbearably as a result of a terminal illness, to receive medical assistance to die at his or her own considered and persistent request; and to make provision for a person suffering from a terminal illness to receive pain relief medication. The main argument made in favour of the Bill was that attitudes had changed in the ten years since the possibility of helping terminally ill people to die was last considered by the House of Lords Select Committee on Medical Ethics. Ten years on, Baronesses Jay, Warnock, and Flather, formerly opposed to assisted suicide, were now supporters of a change in the law.
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.
(#ulink_53a7bd1d-bd2e-5c76-b5dd-cfc8b605f440)
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.
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).
† (#ulink_e27d18b8-ef76-541a-9bcb-376bf4906e9d) Beverley Malone, RCN General Secretary.
* (#ulink_15429323-8694-5970-b2d3-7df3f09af757) Jamie Doward, ‘I don’t want to plan my death…’, The Observer (19 September 2004).
* (#ulink_af0130a8-5c87-53a7-9956-266bba5bfd85)GMC News (December 1992).
* (#ulink_7d282e59-1ab1-5046-838d-5d97767b5e68) E. Roberts, J. Robinson, and L. Seymour, Old Habits Die Hard–Tackling Age Discrimination in Health and Social Care (King’s Fund, 2002).
* (#ulink_fc649db0-56e9-5c5e-a92d-6dba7dfd8bf3) Seshamani, M. and Gray, A. (2004).
* (#ulink_3147c9d2-5b31-5a84-8835-efdf7167da04) Williams, A. (1997).
* (#ulink_f3bf0582-3948-5ee6-9d26-813b2f5bbd1b) Grimley Evans, J. (1997).
* (#ulink_6a6db0a6-3b22-59e6-b446-5e0fcbaf2c47) Chris Price, ‘Who Pays for Grandma?’ The Stakeholder (1999); the Royal Commission on Long-Term Care (1999).
* (#ulink_f598f4dc-66fb-5b74-861c-30022dd2a5db) Liz Phillips, ‘Does nobody care?’, Daily Mail (7 July 2004).
* (#ulink_d8675f99-27df-5293-a6db-0dd78496f9a8) Gary Younge, ‘Grey power bites back’, The Guardian (5 June 2000).
† (#ulink_d0cd8a87-98f6-574c-bcaf-0f0ef1ae1841) ‘The battle for the older voter’, The Economist (18 September 2004), 37.
* (#ulink_d0cd8a87-98f6-574c-bcaf-0f0ef1ae1841) Peter Riddell, ‘Getting the Grey Vote’, Parliamentary Monitor (November 2004).
† (#ulink_d710ece9-9213-51dc-b84c-bfbfdde09236)Responding to Elder Abuse (Community and District Nursing Association, 2004).
‡ (#ulink_d710ece9-9213-51dc-b84c-bfbfdde09236) Liz Gill, ‘Abuse is a wicked secret’, The Times (1 January 2004).
* (#ulink_670046a2-bf6f-5875-b59f-5550a0786d45) ‘Who Cares for Granny?’, Channel Five, a MacIntyre UK Undercover documentary (October 2003).
* (#ulink_670046a2-bf6f-5875-b59f-5550a0786d45) Jenkins, G., Asif, Z., Bennett, G. (2000).
† (#ulink_670046a2-bf6f-5875-b59f-5550a0786d45) Action on Elder Abuse press cuttings, April 2002–March 2003.
* (#ulink_f59f37e8-939b-5b6f-ab73-30fabdb8ae03) Tony Robinson, ‘This shameful neglect’, Daily Mail (13 January 2004).
† (#ulink_f59f37e8-939b-5b6f-ab73-30fabdb8ae03)Daily Express (5 November 2003).
‡ (#ulink_ea8accaf-0bca-54ed-b39a-c6e7751aab27) K. Leason, Community Care (6-12 November 2003).
* (#ulink_548f3f6d-1511-5ff1-923b-6210c6eb8054) Sue Clough, Daily Telegraph (15 August and 9 September 2000).
* (#ulink_c6011b98-41a3-5331-a931-5d4a61e37794)Yorkshire Post (5 June 2003).
† (#ulink_c6011b98-41a3-5331-a931-5d4a61e37794)Evening Press, York (11 June 2003).
‡ (#ulink_c6011b98-41a3-5331-a931-5d4a61e37794)Yorkshire Post (11 June 2003).
§ (#ulink_c6011b98-41a3-5331-a931-5d4a61e37794) ‘This is Lancashire’, BBC News (30 April 2004).
* (#ulink_453238d1-c532-53a9-a41c-3a130dbcb598) Maureen Paton, ‘A veteran fights a new battle’, The Times (27 April 2004).
* (#ulink_c8841a51-5bb4-5c0d-8f26-7bea171fd1e9)CHI News (October 2003).
† (#ulink_bc8147c4-cb04-5c06-9ed9-e8d420c58cf0)‘Not because they are old’: An Independent Inquiry into the Care of Older People on Acute Wards in General Hospitals (Health Advisory Service, 2000).
* (#ulink_37063bec-5107-5987-a3f9-3e5ddafadb4c) Better Regulation Task Force, Bridging the Gap (2004).
* (#ulink_a9873bb8-31e0-55aa-85d0-572d08767594) Melanie Henwood and Eileen Waddington, Home and Away: Home from Hospital and the British Red Cross, Progress and Prospects (2003).
* (#ulink_7025614a-aeb0-5398-94f9-f71ebe977569)Wanstead and Woodford Guardian (20 November 2003).
* (#ulink_9c57aa7c-6aef-5d8a-8461-331a206c5fc2) Janet Street-Porter, ‘I’ll do anything except go into a care home’, TheIndependent (6 February 2004).
† (#ulink_e7436187-3f9d-553a-8988-ebd9ed02c1b7) Yasmin Alibhai-Brown, ‘Age of Respect’, Community Care (10–16 December 1998).
* (#ulink_82eb6014-65d4-5102-8d2b-ea18d1fcc9a5)The Future of Health and Care of Older People: The Best is Yet to Come (Age Concern, 1999).
TWO THE MENTALLY ILL (#u65628d9d-9694-53db-a746-b63e5f381da6)
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.
This chapter is about those who have mental health problems, how we treat them, and how we regard them.
It looks at the stigma attached to mental health and at our lack of kindess towards people who are mentally ill.
It examines how our thinking has grown out of past experience, and tells the history of attitudes towards people with mental illness. It asks whether we are any more enlightened than our ancestors were, and whether our new drugs and other interventions make the lives of those with enduring mental illness any easier.
It looks at whether we use the mental health system as a form of social control and ask whether the experience of innumerable cases where things have gone very wrong tell us that those who work in mental health do not care for their patients.
It will also examine the increasingly risk-averse public policy climate and ask if the mental health world can ever be risk free. And it will also ask whether, if the views of service users were taken more seriously, there might not be better outcomes, with people being able to work and live comfortably, secure in the knowledge that if a crisis arises there will be proper care available from a team already known to the individual.
Finally, it will ask the essential question: if we were seriously concerned to care for, and even cure, those with enduring mental illness, would we ever have invented anything remotely like the present system?
Psychiatry as Social Control
We are not alone in our attitudes towards mental health. Many countries, many systems, are the same. How we treat people with enduring mental illness is a blot on the consciences of most of the developed nations, and on quite a few of the developing nations as well. In addition, there has always been the risk of political manipulation: in many countries those who have opposed the ruling system have found themselves confined to the asylum. This was most prevalent in the former Soviet Union, when dissidents were pumped full of drugs and left in the mental wards to rot. Nazi psychiatrists, too, took part in the most appalling destruction of people with mental illness and learning disabilities in the 1930s, long before the extermination of Jews and gypsies. The so-called T-4 programme was devised by psychiatrists alongside Nazi ideologues. The programme was finally ended in 1941, but not before an estimated 80–100,000 people had been killed, including the so called mercy killings of the ‘insane’ and of roughly five thousand ‘deformed’ children.* (#litres_trial_promo)
This history of the use of psychiatry as a means of social control led to a critique of psychiatry in the late 1960s and early 1970s led by Thomas Szasz, Professor of Psychiatry at Syracuse University, New York. He argued that mental illness was a man-made myth and suggested that psychiatry as a discipline was a pseudo-science, comparable to alchemy and astrology. Michel Foucault, the profoundly influential French historian of culture and ideas, rather agreed. For him, and for Szasz, psychiatrists became, as Roy Porter puts it, villains, and their discipline akin to a form of magic. Martin Roth and Jerome Kroll argued precisely the opposite–that there had been real progress in the study, diagnosis, and treatment of madness and psychopathologies and that there was a real organic basis to mental illness.
The truth is that there has been a terrifying and disgraceful history of using psychiatry and its antecedents as a means of social control, whilst at the same time some of the treatments, both pharmacological and psychotherapeutic ‘talking’ remedies, have proved beneficial and effective for some, but not all, sufferers.
To understand how we view mental illness now, at the beginning of the twenty-first century, we must look back at the history of mental illness and its treatment.
Possession by demons and other evil spirits may not be part of our intellectual armoury now, yet when we bury our dead (in Jewish ritual anyway, and in many other practices) we still stop up bodily orifices to prevent them being invaded by evil spirits, and pause on our walk to the grave to shake off any lurking demons. Belief in evil spirits is just below the surface in many of us, as we touch wood, avoid walking under ladders, and look askance at black cats. Yet all this is intimately tied up with how we view those who have mental illness. Do we think they are possessed? (Sufferers themselves often take that view.) Or do we regard them in the same way as we would do if they had a physical illness? If so, why don’t we allocate them the same resources, and treat them with the same consideration, as those suffering from physical illness? Do we believe they need to be controlled, as their containment in the old asylums would suggest? If so, is that for their protection or ours? All these questions may have half-answers in our minds; but society is split, and individuals within it are confused, about mental illness and how to care for those who suffer from it.
Historical Reflections
Before the witch craze of the fifteenth to seventeenth centuries, treatment of mental illness was often kinder. Much mental derangement was viewed as being inflicted by Satan and was therefore susceptible to the saying of masses, pilgrimages, or indeed exorcism. Protestants had a different view. The Anglican divine Richard Napier doubled as a doctor and specialized in healing those ‘unquiet of mind’. He thought that many of those who consulted him were suffering from religious despair (something still cited by many of those with mental illness in the twenty-first century, and less than comprehensible to many of the rationalist, post-religious, mental health professionals). They feared damnation, the seductions of Satan, and the likelihood of being bewitched. Napier’s treatment was prayer, Bible readings, and counsel–the talking therapies so many people with mental illness ask for now.
The excessively religious were also thought of as mad. Many of Wesley’s followers in the early days of Methodism were thought fit only for Bedlam (the Bethlem Hospital, now part of the Bethlem and Maudsley hospitals configuration), even though Wesley himself still believed in witches and demonic possession. His followers, at what might be described as revivalist meetings, would cry out and swoon uncontrollably. Many thought this must be madness. The same was said of Anabaptists, Ranters, and Antinomians. They were thought to be sick (puffed up with wind) and doctors and others who believed in social control pointed out that the religious fringe and outright lunatics shared much in common: they all spoke in tongues (glossolalia, now prevalent in much of the evangelical side of modern Christianity), and suffered convulsions and spontaneous weeping and wailing. Towards the end of the eighteenth century, with the rise of rationalism, doctors and scientists berated the Methodists for preaching hellfire and damnation, which they said led people to abuse themselves and commit suicide. Religious visions became a matter of psychopathology, and those who experienced religious yearnings and visions were thought mad.
As belief in witchcraft diminished new scapegoats appeared–beggars, vagrants, and criminals. But the idea of the rational had come to stay. Religion itself had to be rational–why else would John Locke write The Reasonableness of Christianity (1695), and why else would Freud and his allies later describe God as wish fulfilment? Belief was all too real. Its object, however, was not real at all; it was a projection of neurotic need, explained, as Roy Porter describes it, in terms either ‘of the sublimation of suppressed sexuality or the death wish’.* (#litres_trial_promo) Porter also points out that, in time, the medical profession replaced the clergy in dealing with the insane.
The religious view had been accompanied since ancient times with a different, scientific, view. Galen, the ancestor of modern medicine, had described melancholy and other mental illness and Aretaeus of Cappadocia (c. 150-200), a contemporary of Galen’s, had already identified bipolar affective disorder with his descriptions of the depths of depression and the delusions that could accompany it and the patches of mania, the rapid extreme mood swings, that define classic manic depression. Not until Richard Burton’s Anatomy of Melancholy (1621) was a better, fuller description given of depression, as he reviews the old explanations of blood, bile, spleen and brain, whilst adding lack of activity, loneliness, and many causes. His recommendations for treatment (or possibly containment-living with melancholy rather than curing it) consist of a variety of classic later advice: exercise (still recommended), diet, distraction, and travel, as well as hundreds of herbal remedies and music therapy, also often recommended in modern practice.
But it was the French philosopher Descartes (1596-1650) who brought about the biggest shift in the rational approach to mental illness. If, as Roy Porter puts it,?
(#litres_trial_promo) ‘consciousness was inherently and definitionally rational’, then ‘insanity, precisely like regular physical illnesses, must derive from the body or be a consequence of some very precarious connections in the brain. Safely somatized in this way, it could no longer be regarded as diabolical in origin or as threatening the integrity or salvation of the immortal soul, and became unambiguously a legitimate object of philosophical and medical inquiry.’
This was a deeply influential approach and in the late seventeenth century some began to take the optimistic view that people who are mad could be retrained to think correctly and rationally. But folk beliefs in witches and possession persisted, and the treatment of the mad was by no means totally predicated on this new, optimistic view of humanity, even though there were an increasing number of private asylums where treatment was more humane and some form of talking therapy-aimed at retraining the mind-was available.
The practice of locking up people suffering from all kinds of mental illness and disability had started to grow from the fourteenth century. The religious house of St Mary of Bethlehem in Bishopsgate (Bedlam, now the Bethlem and Maudsley Hospitals in London) was founded in 1247 and started catering for lunatics in the late fourteenth century. Some time between 1255 and 1290 an Act of Parliament, De Praerogativa Regis, was passed that gave the king custody of the lands of natural fools and lordship of the property of the insane. The officers in charge of this were called escheators, and they also held inquisitions to decide if a landholder was a lunatic or an idiot. Already by 1405 a Royal Commission had inquired into the deplorable state of affairs at Bethlem Hospital, suggesting that concern has been prevalent for centuries about how people with mental illness were treated.
By the eighteenth century asylums for the insane were widespread, though from 1774 certification was instituted so that confinement in a madhouse had to be done on the authority of a medical practitioner (with the exception of paupers, who could be locked up on the say so of a magistrate.) In Catholic countries, asylums were under the rule of the Church, with care provided by religious orders. In Protestant countries, care varied, but the state gradually played a greater part. Michel Foucault regarded shutting people up in asylums, not as a therapeutic practice, but as a police measure-a divide still found in mental health treatment and policy to this very day. He describes how houses of confinement such as the Bicêtre in Paris gradually came to be seen as a source of infection and concern was expressed that this would spread to the poor ordinary decent criminals who were thrown in with the insane.* (#litres_trial_promo) Asylums became spectacles and objects of fear at the same time: at the new Bethlem Hospital, a beautiful building in Moorfields, one could pay to view lunatics until 1770.
But, for the inmates of these asylums, the regimes were cruel. There was annual bloodletting at the Bethlem and general use of strait jackets and purges. There were, however exceptions. One of the most distinguished was William Battie (1704-76), physician to the new St Luke’s Asylum in London, who also owned a private asylum. A small proportion of the insane did, in his view, suffer from incurable conditions; but the majority, he argued, had what he described as ‘consequential insanity’-derived from events that had befallen them-and for whom the prognosis was good. So instead of bloodletting, purges, surgical techniques (such as removing ‘stones’ from the brain, a particularly vile treatment), and restraint, what was needed was what he described as ‘management’-person to person contact designed to treat the specific delusions and delinquencies of the individual. Battie considered that ‘madness is…as manageable as many other distempers’.
(#litres_trial_promo)
And so a humane period-relatively speaking-in the treatment of mental illness began. Amongst others, Francis Willis (1718-1807), who was called in to treat George III, pioneered a ‘moral management’ school of treatment, where the experienced therapist would outwit the patient. At Willis’s Lincolnshire madhouse everyone was properly dressed and performed useful tasks in the gardens and on the farm, with exercise being a key feature. Similarly, the York Retreat developed moral therapy in a domestic environment. The Quaker tea merchant William Tuke (1732-1822) started a counter-initiative to the local York Asylum, which had been bedevilled by scandal. Patients and staff at the York Retreat lived, worked, and dined together. Medical therapies had been tried but dispensed with in favour of kindness, mildness, reason, and humanity, all within a family atmosphere.
But this enlightened approach was not to last. Although from 1890 onwards two medical certificates were required to detain any patient, the result was to close off mental institutions to the outside world. They were hard to get into-and even harder to leave. Little treatment, let alone comfort, was provided and the reputation of the new asylums began to sink as it became clear that they were silting up with long-stay, zombie-like patients. Criticism of such institutions began in the late nineteenth century but it took a hundred years before the last of the old long-stay mental hospitals closed.
Scientific thinking about madness had begun to degenerate too. John Stuart Mill criticized the operation of writs de lunatico inquirendo: ‘the man, and still more the woman…[who indulges] in the luxury of doing as they like…[is] in peril of a commission de lunatico and of having their property taken from them and given to their relations.’* (#litres_trial_promo) Science was beginning to believe that madness was caused by heredity, like the first Mrs Rochester in Charlotte Bronte’s Jane Eyre (1847), and most real progressive thinking was being carried out in specialist institutions such as the Maudsley, leaving the asylums, gradually starved of resources, to become the chronic patients’ permanent home. Only there could we be sure that the bad, the mad, and the other were kept away from us all. And since the newer asylums were built on the outskirts of towns and cities, or in the country, most patients were kept confined long term at some considerable distance from their homes, families, and friends, who all too quickly lost touch with them. When patients died, after being confined for life because their condition was thought to be incurable, their brains were examined in post mortems for signs of the cerebral lesions that many thought were the basis of all insanity. Psychiatry had become a tool of social restraint. In Britain this continued well into the twentieth century and remained the case until the creation in 1948 of the National Health Service, which largely took over responsibility for the asylums.
Twentieth-Century Policy and Practice
The twentieth century started with an obsession about degeneracy of the ‘stock’. It was feared that a ‘submerged tenth’ of the population would outbreed everyone else. The Royal Commission on the Care and Control of the Feeble Minded (1904–8) suggested that mental defectives, so described, were often prolific breeders and that, if allowed, would resort to delinquency, excessive sex, and alcohol. Winston Churchill, then Home Secretary, supported proposals for the forcible sterilization of 100,000 moral degenerates. His views were thought too extreme, however, and his plans were thought so sensitive that they were kept secret until 1992. But he was not alone.
Some forcible sterilizations did in fact take place, and in 1934 the Brock Committee recommended voluntary sterilization as a cheaper means than physical segregation of separating moral defectives from the nation’s gene pool. Homosexuals continued to be ‘treated’ in mental health units into the mid 1970s, the treatments including oestrogen therapy, electric shock therapy, psychoanalysis and behaviour aversion therapy.* (#litres_trial_promo)
All this has to be set against a gradual change in thought. Freudian theory, as well as the work of Jung and Adler, with their insights into the importance of the unconscious mind on emotions and behaviour, was just beginning to influence the way people thought about mental health. Containment, however, was still the order of the day, and concerns that the mentally defective would affect the genetic character of the nation only disappeared gradually. Even in the 1990s there were discussions about the forcible sterilization of young women with learning disabilities, ostensibly to protect them from unwanted pregnancies but presumably also because of fears about the children they might produce. Broadly speaking, however, theories about degeneracy and contamination of the gene pool had become unfashionable because of their Nazi associations. Therefore the assumption had to be made, for want of any other theory, that mental ‘defectiveness’, as well as insanity, was a health issue. With the establishment of the NHS, local authority hospitals were transferred to the Ministry of Health, but there was little change in conditions.
However, the drugs did change. Largactil, along with other anti-psychotic phenothiazines, appeared around 1955. It controlled symptoms without the sedative effects of the old drugs. Despite being a form of control, such drugs were widely used and community care became easier and less risky. In 1953, almost half the beds within NHS hospitals had been for mental illness or mental ‘defectiveness’. However, after 1954, the number of patients in mental hospitals began to decline and moves were made to change mental hospitals into institutions like those for physical diseases.
In 1959, the Mental Health Act excluded promiscuity or other immoral conduct as grounds for detention under the Act. The idea of moral degeneracy was beginning to fade, as well as the beginning of a realisation that institutionalizing people was bad for them.
No new large-scale asylums were built after the Second World War, but hospitals for mental ‘defectives’ continued to be built until 1971. And the old institutions remained. By 1966 there were still 107 mental illness and 66 mental handicap hospitals with two hundred or more beds. The following year Sans Everything was published, a collection of articles by Barbara Robb about how elderly people were treated in institutions, particularly in psychiatric and geriatric care. It caused a storm, and the official investigation, in 1968, substantiated most of what she said.
The Era of Inquiries
And so we come into the great era of inquiries, from the early 1970s onwards, and the gradual shaming of the institutions for the mentally ill and of those who worked in them. Virginia Beard-shaw’s later work for Social Audit in the late 1970s and early 1980s pulled together a great deal of the evidence from those inquiries about who blew the whistle on what was going on in some institutions for the mentally ill.
For example, there is the case of Ken Callanan and Art Ramirez, two student nurses who were forced to stop training at Brookwood Hospital in Surrey after staff and management united to discredit them. In August 1978, Callanan, a former merchant seaman aged 29, began training as a psychiatric nurse at Brookwood Hospital School of Nursing. His introduction to nursing included a lecture on nursing ethics during which his Director of Nurse Education told the class that: ‘If I find that any of you have ill treated a patient or failed to report ill-treatment by other staff, your feet will not touch the ground. I will personally show you the door.’* (#litres_trial_promo)
After twelve weeks of training he was sent for his second practical posting on Tuke 4, a ward named after that great reformer of mental health services two centuries earlier. Tuke 4 was a ward for the chronically mentally ill–in other words, a long-stay ward. Here, in early 1979, Callanan witnessed repeated abuse of patients by the ward’s charge nurse, who had been at Brookwood for years and was well liked.
Callanan’s next posting convinced him that what he had seen on Tuke 4 reflected systematic abuse and malpractice. A fellow student, Art Ramirez, told him that he had seen the same charge nurse kick a patient. So, in a confidential letter, Callanan told his unit Nursing Officer about the ill treatment he had seen. The investigation was delegated to the Senior Nursing Officer, who knew the charge nurse well. The investigation continued for about a month, but even before its results were known feelings against Callanan and Ramirez were running very high and staff threatened a walk-out unless the pair were suspended. Management ‘compromised’, as Beardshaw puts it. The two were sent to the training school, with nothing to do.
After the SNO’s investigation, the charge nurse was completely exonerated. Callanan’s ‘inexperience’ had led him to ‘misinterpret’ what he had seen. Despite the official exoneration of the charge nurse, the other staff continued to threaten to walk out if Callanan and Ramirez were allowed back and the local branch of COHSE (Confederation of Health Service Employees, as it then was) voted to recommend Callanan’s expulsion from the union.
Callanan and Ramirez were offered a deal: they could return to work if they were prepared to accept, sight unseen, the internal investigation’s findings and a new procedure for making complaints. The students agreed to the complaints procedure in principle, but could not agree to accept the internal investigation’s results without having seen it.
On the Royal College of Nursing’s advice, the pair took their concerns to the Beaumont Committee, which Surrey Area Health Authority had set up to look more widely at conditions in mental institutions. A string of staff witnesses defended the charge nurse, both to the Beaumont Committee and to the General Nursing Council Disciplinary Committee, to which Callanan had referred the case. But the strength of the students’ evidence did convince a lot of outsiders. In February 1980, a year after the abuse was first witnessed by Ken Callanan, the charge nurse was finally struck off the General Nursing Council’s register, after five charges of ill treatment and drug abuse were found proven. He was dismissed from Brookwood. In April, the Beaumont Committee upheld the students’ allegations, saying that the pressure they had been put under by fellow and senior staff and the union was deplorable. Art Ramirez left Brookwood and trained elsewhere. Ken Callanan became an ambulance man, a great loss to mental nursing.
We see the same pattern in inquiry after inquiry. A few brave staff members–people of great conscience, who are prepared to take risks with their own livelihoods and reputations for the sake of others–tell the authorities what they have seen and heard, but it rarely does them any good. Few of them ever reach any kind of senior position, even after allegations are proven.
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