THE LIMITS OF WHAT’S HUMAN

Throughout the year of our Millennium Festival I was privileged to chair the ‘Question Time’ sessions that followed the six pairs of lectures delivered by our Visiting Millennial Fellows. Subsequently I was invited to edit this book, intended as a legacy of these events. The 12 lectures that follow stand as a testimony to the quality of our speakers’ thoughts. What this book does not capture, however, is the quality of the ideas raised in the ‘Question Time’ sessions, when on each occasion the speakers were joined by three distinguished panelists. In response to comments and questions from our audiences, they and the speakers were able to examine the fine grain of the ethical dilemmas that were raised.

These discussions have proved impossible to summarise, and the verbatim transcripts simply fail to convey the style, pace and intensity of the debates. I have tried to capture something of the scope of them in this opening essay, which, however, remains an entirely personal reflection. I begin this reflection with the basic tools of our deliberations; with words. 

In his poem ‘Burnt Norton’, T S Eliot warns us:

Throughout our year-long exploration of the dilemmas that face the individual and society, consequent on what medicine will in future offer, and doctors be able to do, the ambiguity of words was to echo in almost everything said. Terms like ‘individual’, ‘society’, ‘health’ and ‘medicine’ – the common currency of our debates – simply would not stay in place, would not stay still.

The choice of words in our headline, ‘Medicine and Humanity’, and in our strap line, ‘Millennial Festival of Medicine’, was made to challenge us to soar above the immediate problems posed by a struggling NHS. We were, as the word ‘millennium’ suggests, concerned with grander vistas of time and change. In the event, the hint at a millennial timescape was perhaps a tad ambitious. The historic changes with which for the most part we were concerned might span as much as a century, but it was the decade that proved the commonest currency of our deliberations. And this made sense on a human scale.

Freeman Dyson, in his book Imagined Worlds, suggests that the decade is the basic unit of historical time – what he calls the ‘normal horizon’ of human activities – the average life span of a government policy, or of a research programme in science, or of a child growing up. We parcel our personal and social time with such resonant decimal terms as ‘The Sixties’ or ‘The Thatcher Years’. Although our speakers permitted themselves to range far over history, for the most part their purview was limited to little more than a couple of decades on either side of the millennial cusp on which we find ourselves.

Nonetheless, what we were all marking was the Millennium. Indeed, the setting for our lectures and debates was Southwark Cathedral – although our participants included members of many faiths, and of none. This setting served well to remind us that the roots of meaning in such words as ‘medicine’ and ‘humanity’ were to be found deep in the soil of the Judeo-Christian tradition.

‘Medicine and Humanity’ signaled the scope and depth of the questions about contemporary medicine that we wished to explore. Inevitably, and out of the direct line of sight of the small group of us who devised this programme, there lurked a host of assumptions, values, propositions and anxieties. Our expressed intention was to create a debate. I do not doubt that we wished also to shape it.

‘Humanity’, with its attendant semantic burdens of ‘humane’, ‘humanitarian’, ‘the humanities’, and indeed ‘humanism’, opened out a rich field of enquiry and speculation. In its narrowest sense, humanity suggested only our concern with human illness and health, but we clearly intended more than this. The adjective ‘human’, as the Oxford English Dictionary observes, historically referred not only to matters pertaining to mankind, but carried a distinction from matters divine. Hence perhaps ‘humanism’ – with its historic enlightenments and dark shadows.

The words ‘human’ and ‘humane’ did not express separate meanings until the eighteenth century. The OED lists the character or qualities of being humane as: ‘behaviour or disposition towards others such as befits a human being – civility, courtesy, politeness, good behaviour; kindness as shown in courteous or friendly acts, obligingness’. The medical profession clearly aspires to be humane: these and similar terms have been imported wholesale into the rhetoric of the General Medical Council’s prescription for virtue – Tomorrow’s Doctors.

If ‘humane’ is an adjective much associated with medical practice, ‘humanitarian’ is a word increasingly attached to medical aid – especially in the Third World. It gained for itself much approbation at the close of the twentieth century, but there are also question marks about the motivations of the First World in its beneficence towards the Third. Indeed, the term ‘humanitarian’ was not always so favoured. Again, the OED: ‘One … who devotes himself to the welfare of mankind at large; a philanthropist. Nearly always contemptuous, connoting one who goes to excess in his humane principles.’ This contempt was to echo in some of our discussions about the proper bourns of public health.

Clearly our choice of ‘humanity’ carried within it contradictions and paradox. ‘Medicine’ was scarcely a less ambiguous term, needing always to be distinguished from ‘health’ – a very different concept only tangentially or accidentally connected with what doctors do. As for ‘festival’, we were to prove less concerned to celebrate the remarkable advances in public health and medical treatment than to fret about what is to come, to warn, to urge caution.

None of this is to complain about our sublime and incomparable English language. Rather, it is to claim that its imprecision is its crowning glory. If in what was to follow we were sometimes to discern a new truth, or see an old truth illuminated anew, the light shone not so much from the words we chose, as from the dazzling spaces between them.

We chose six topics: justice in health and care; the technical limits of human identity; the boundary between the health needs of the individual and the interests of society; the quality of life and the quality of its end; the social and biological meanings of mental health; the challenges to health of urban life. As the year progressed, these different topics echoed with recurring leitmotifs; a note sounded in one would resonate with the chords struck in another, as we strained to catch the moral drift of modern medicine playing in the music of our times.

In our January meeting, fairness was at the heart of the presentations and debate. We asked:

Our speakers were sharply divided, with Karl Marx and Adam Smith both prayed in aid of their contrasted approaches. Julian Tudor Hart reflected on a lifetime as a general practitioner serving the needs of a Rhonda Valley once-mining community. He commented: ‘Measuring the coping power of poor people against what I thought I might have managed myself, with the same history in the same circumstances, they rarely failed to amaze me.’ 

Kenneth Minogue presented us with a quite different view: ‘Our own society operates on the counter-factual assumption that all its members are capable of managing their own lives. For a great variety of reasons, this is not true.’ He concludes: ‘We might thus set up, very much against the grain of current thinking, a distinction between the competent and the incompetent members of society.’ 

Two paths to fairness are thus opened up to us. Hart’s proposition, which Minogue was to classify as ‘perfectionist’, is breathtaking in its ambition. It is no less than the creation, within the NHS, of ‘a potentially independent economy and culture, operating within its own entirely new paradigm, with its staff and the populations it serves as its most dependable political army.’ 

Minogue’s proposition is more pragmatic. It is to achieve fairness by devoting public funds to the health needs of those whom he denotes as not competent to fend for themselves. In this view, equality is certainly not a precondition of fairness. On the contrary, fairness can only stem from acknowledging the innate nature of all sorts of human inequalities. To do other is to permit doctors to ‘follow the Platonic path of telling us how we ought to live’.

For the most part, it was the challenge of achieving justice between the rich and the poor that dominated the debate. Other failures of fair distribution of resources were largely subordinated to this overriding concern. In response to a question about the rights of different groups or individuals, one panelist observed: ‘This is a zero sum game – when one wins another loses.’ That being agreed, how are we to judge what is just not only between the rich and the poor, but between the old and the young, the mentally and the physically ill, those compliant with medical advice and those who resist it?

Fairness in health care is most often defined in terms of response to health need. Hence Hart’s famous postulation of ‘The Inverse Care Law’ – those in most need receive proportionately the least health resources. One panelist invited us to choose ‘between the use of public funds for gender reassignments and hip replacements’. But on what scale are we to measure good or justice here? In the end are not all health needs merely wants in disguise? If that is so, then ‘wants’ can be described as the wishes of the suffering individual and ‘needs’ as the wishes of the politically and professionally enfranchised – scarcely a secure basis for fairness.

Fairness has also been discussed in terms of the deserts of the individual. The following question was posed: ‘When ill health is self-inflicted – for example in the case of illnesses related to excessive alcohol consumption or cigarette smoking – should people still have a right to free health care?’ But can an illness caused by an individual’s excessive use of alcohol and tobacco be simply deemed ‘self-inflicted’? What alternative forms of gratification might be available to a middle-aged out-of-work quarry worker suffering from obstructive airways disease who is sliding into heart failure? His diseases are closely related to his smoking 40 cigarettes a day, and his many years cutting limestone? What motivation and resources were available to him to help change his behaviour? The notion of culpability in the causes of illness is just too simplistic to provide a safe basis for judgement.

At the close of the nineteenth century Bismarck introduced State-funded health care in Prussia, not out of social idealism (or ‘perfectionism’) but in order to enhance the productivity of his workers and the fighting efficiency of his soldiery. The notion of health deserts sits comfortably with what has been called the ‘commodification’ of health care – indeed, with the commodification of health itself. This is no less true because the notion of deserts is for the most part only silently invoked.

Although holding positions at opposite ends of the political spectrum, it seems to me that both Hart and Minogue argue that health care can be justly distributed only when the contract between the individual and the community is just – in all its many social clauses. They would, of course, differ sharply on the definition of such justice. I was left pondering on the monumental expectations that so many of us have of our National Health Service – not only that it be a paradigm of social justice, but that it should become the major means of bringing this about.

In March we questioned the technical limits of the human. We proposed the following:

Bio-engineering may presently offer genetic engineering; xenotransplants; cloning; in vitro pregnancy; gender by design; psychopharmacological control of personality, intelligence, mood, memory and pleasure; motorised prostheses; cosmetic remodeling; nano-engineering; micro-chip/brain interfaces and so on. How will these possibilities extend, enhance, alter or corrupt the human experience? How can we retain our ‘humanity’?

The exploration of the human genome sets the agenda for science today, much as Galileo’s cosmology did 400 years ago at the dawn of the Age of Enlightenment. Both speakers and panelists chose genetic manipulation as the exemplar of future change, and this was to tease us about the points at which human life may be said to begin and end.

What seemed to underpin all the contributions to the debate was a shared need to recognise an authenticity in our human identity, and to invoke some ultimate authority for this. Our opening speakers, one a Christian, the other a Jew, and one of our panelists, a Muslim, were able to anchor their thoughts in the authority of God. Early in his address the Bishop of Oxford touched on the role of faith (and its absence) in contemplating the human, and sought to establish a broad common ground. ‘God does indeed deal with (matters of life and death), but he deals with them through us human beings’; and "Three billion years of careful adaptation, its built-in wisdom, suggests that it is sometimes right to go with the grain of nature". For those of us whose view is not grounded in formal religious beliefs, something like recourse to the notion of ‘the grain of nature’ provides perhaps a parallel and comforting authenticity and authority.

Are there limits to the technological manipulation of the human, beyond which its subjects will no longer be human? If so, should we attempt to define these limits? Will we be able to ensure that they are observed? Once again we were concerned with the rich diversity of linked meanings embedded in the human. I suggest that our hopes for, and fears of, biotechnology are concerned with four fundamental human quests. The first is for certainty; the second, for limits; the third, for perfectibility; the fourth, for adaptability.

First, the quest for certainty. There is a widely held, but erroneous, belief that advancing medical knowledge will reduce uncertainties about what is in store for us; for example, that genetic testing will be able to tell us the names of our future diseases and the dates of our deaths.

The Bishop appears to concede this possibility, but reassures us that we will not succumb to its gloomy consequences: ‘I wish to challenge the view that this vast increase in knowledge, leading to certainty in so many spheres, where in the past there had been only uncertainty, will lead to fatalism. The human spirit is not made like that.’ This fatalism would also be misplaced on scientific grounds. Our genetic codes predict a host of likelihoods and vulnerabilities. But the expression of our genetic material as our human selves (what our genetic material becomes) depends on uncountable interactions between the different components of that genetic code and a host of environmental accidents – physical, psychological and social. Genetic science will not shift us from the present age of probabilistic medicine to a future state of fully predictive medicine.

I think the news here is good. It looks as though genetic medicine will give us the best of both worlds. We will have greater potential for intervening effectively at very early stages in many presently destructive diseases, but we will not be burdened with certainty. The views from science and religion seem here to be in step. Lord Winston rejected the possibility of scientific certainty, not only on the ground of his insights as a scientist, but on what seemed the ground of faith: ‘If we are determined by our genes then free will no longer exists – I don’t think this is the case.’ 

One member of the audience posed the following question: ‘When it becomes possible to determine one’s medical future, will the panelists take the opportunity of benefiting from this? Should we follow suit?’ Somehow no panelist managed to respond directly, which I found the most telling of answers.

Second, we were concerned with the quest for our natural boundaries – for limits. We tend to think of boundaries as external to us – for example, the ‘edges’ of our bodies, our families, our communities, our personal, social and political environments. The emergence of genomic medicine turns our attention to the boundary on the inside – to the make-up of our genotype.

Throughout the discussion of all our six topics, we returned to the nature of the individual human life – to the internal boundary of the self and the external boundary with others. In a poem called ‘On Not Saying Everything’, the poet Cecil Day-Lewis writes of the essential need for boundaries – in the growth of a tree, of a poem, of a love affair:

The Bishop of Oxford echoed these sentiments when he said: ‘A sculptor works with a particular piece of stone, a painter with a specific canvas. It is in wrestling with the particular, with quite specific constraints and definite boundaries, that art is produced. The same is true of life … Constraints, boundaries, limits can all act to liberate the potential we have within us to be truly human.’ 

Our genotypes have not hitherto been purposively self-constructed, even though we may allow the selective breeding of cattle, horses and dogs to have been the forerunners of contemporary genetic manipulation. Until now, the human has seen the internal boundary of the self as determined by God, nature, or chance. But how will we feel about our identities, our very selves, when these have been determined by parents, bioscientists, philosophers and governments? One member of the audience conjured up a vision of future family law, under which a child might sue his parents for failure to eliminate an undesired genetic characteristic.

Third, we came to look at the quest for perfectibility. Lord Winston noted a number of hazards in this drive to improve the stock: ‘We already live in an unequal society. With enhancement we would have a superhuman group and further inequality. Putting something into our children, something we think subjectively to be good, might prove not to be objectively good.’ 

The biological, as distinct from the moral, impediment to genetic perfectionism is the false notion of the ‘bad’ gene. Why have so-called bad genes (for example those associated with schizophrenia or breast cancer) survived? Was it incompetent of Natural Selection to have permitted the perpetuation of these saboteurs of our genetic success?

There are two biological explanations. First, it seems that many of the genes that make us vulnerable now to diseases in old age, convey benefit earlier in life. We have simply not been programmed for the current human life span in the developed world. Second, so-called bad genes may well have conveyed positive benefit early in our evolution. A gene that contributes to a propensity to obesity today (associated with diabetes and heart disease) may have served our primitive forebears well through hard winters or in times of famine. To eliminate them now from the human repertoire might prove to be a costly mistake.

What of the moral objection to the quest for human perfectionism? There was something chilling in the idea of genetic medicine enhancing our humanity; an echo of that ancient Hellenic ideal which is widely held to have provided the inspiration and model for Nazi idealism. This may have begun for many of its adherents as a seemingly innocent longing for health, beauty and purity of body, heart and spirit, but it ended in the death camps of Treblinka and the rest.

Lord Winston took a more robust view of the dangers: ‘We have always practiced eugenics. Orthodox Jews, Muslims, Christians will marry one of their own and have children. It is foolish to think this will lead to a Nazi society, and nonsense to think we are trying to create a perfect baby – we can only prevent a baby having a particular disease. It is the degree to which you practice all these things that matters.’ 

Describing transgenic technology as the single most valuable biomedical advance in recent years, Winston raised the future possibility of using the appropriate transgene to immunise an entire population against a fearfully destructive disease – he gave the example of beta-thalassaemia among Cypriot children. He was making the point that by altering the germ line, the future children of those treated would in fact be transgenic.

This technical fix, the ‘repair’ of a continuously ravaged population, seems morally safe, but raises another qualm about the spiritual consequences of perfectibility. Take the example of Down’s Syndrome. Would the elimination of this condition by whatever biomechanical means be desirable? And by whom? And by what utilitarian criteria? Such questions, I suggest, force us to consider whether a fully ‘healthy’ society, in biological terms, can ever be fully human.

Fourth, it seemed to me that the human quest to adapt was least touched upon in our deliberations. The last time that the genome of homo sapiens was subjected to the cold chisel of Darwinian natural selection, we were hunter-gatherers on the savannah. Will we now be able to use bioscience for politically purposive adaptations?

The Bishop referred to an old rabbinical distinction between repairing and enhancing the universe. This distinction may help us to unravel the intentions and consequences of twenty-first century medicine as it is employed to enhance our human characteristics in a variety of ways that are only tangentially related to the avoidance, amelioration, or cure of illness.

In the foreseeable future, our mood, memory and intelligence may all be promoted by a psychopharmacology based on a deeper analysis of brain function. Mechanical prostheses have already been activated by neural impulses, and medical physicists have speculated about direct microchip–brain interfaces. Surgery and pharmacology can now offer a reassignment of gender. Homo sapiens may thus come to be replaced by ‘Designer Man’. And the very term ‘Man’ will no longer call forth feminist ire. ‘Man’ will be inappropriate once we are freed from the limited choice between only two genders. None of these bio-technical wizardries seemed yet to engage our speakers, panelists and participants.

We were left with some shadows of foreboding about the future integrity of our humanity. The potential of twenty-first century medicine to intervene ever more powerfully in our lives, and to extend its burgeoning technologies into new territory, brings anxiety in equal measure with hope. One of our audience, a Minister of Health in the last government, commented and asked: The Bishop of Oxford believes that ‘not everything that could be done should be done’. In a global economy, how can regulation be agreed and enforced? The uncertain answers left us very worried indeed.

In April our concerns about health and care turned to the boundary between the State and the individual. We asked:

As I write this, important news on progress in the Human Genome Project has just been published. It appears, to the surprise of the scientists, that the human genome is made up of some 30,000 genes – a mere third of the widely predicted number. Two insights follow. First, our genetic make-up is disturbingly far more like that of the mouse than we had thought possible. Second, and more pertinently, the role of our environments in shaping the expression of our genes, in determining the way in which the individual human develops, is infinitely greater than we had believed. The effect of environments and human behaviour on the incidence of diseases, has traditionally been the concern of public health. So has the control of both in the pursuit of health.

The public health movement in Europe grew out of seventeenth and eighteenth century mercantilism. In this tradition, concern was for the health of the nation state. The individual was simply the basic unit of the State, that part of the State which cannot be divided further. The meanings that we now attach to the term ‘individual’, which refer to autonomy, privacy, liberty, entitlements and so on, are relatively recent. In earlier centuries, health, far from being a right, was rather a duty. It was the duty of the subject to preserve his health in the interest of the State, and it was the policy of the State to help him do so.

Bruce Charlton, our first speaker, was concerned with the intrusion of the State on personal freedom, and took the regulation of psychotropic medicines as his exemplar. It was the complicity of the State in promoting an unwholesome aversion to risk that was his prime target: ‘from the public health perspective, psychiatry has the puritanical tendency to sacrifice individual happiness, fulfillment, creativity, whenever this sacrifice contributes to the goals of preventing harm.’ In this mental health context he set a wider argument about the tendency of government to intervene in other areas of our life and behaviour. To what extent does this go beyond what is necessary to ensure sufficient public safety? And on what scale are we to measure this sufficiency?

Peter Budetti, Director of the Institute of Public Health, Northwestern University, put the case for more involvement of government in matters concerning health than was current in his own country, the USA. It was almost startling to be reminded by him that in America today, such are the libertarian sensitivities that proposals to institute a national system of universal health care have been opposed on the ground that such a system would constitute an infringement of personal freedom.

Charlton is concerned, wherever possible, to roll back the tide of government interference in the private life of its citizens. Budetti deconstructs this private life to argue that since no individual functions other than as a part of society, there must be a collective will and authority to impose on each individual such infringements of liberty as are necessary to sustain that society. At the heart of the debate, I believe we were considering the notion of risk – but from a number of conflictual perspectives. Charlton takes the case of antidepressant drugs, and argues that there is no good reason to deny citizens free access to them, unburdened by any endorsement from a doctor. He notes that the use of alcohol can be destructive of health, but that it also conveys great benefit to the majority of us. However, as a matter of history and convention in the UK, we do not classify alcohol as a psychotropic drug, and so do not seek to minimise the risks of drinking by medical control.

In defence of personal freedom, Charlton intriguingly asserts that "subjective experience is more important than objective statistics". I would argue that his position does not need such defence, in fact it weakens his argument. The sense we try to make of numerate data is no less subjective than the sense we try to make of our experience. Both must always be subject to individual history, attitudes and personality, that is to say ‘contingent’ and ‘subjective’. In this sense, all calculations of risk are obscured, rather than illuminated, by the presentation of health statistics as ‘objective’. In this context, the use of ‘subjective’ as a pejorative diminishes the whole human experience.

Public health is essentially a political, before it is a scientific, endeavour. Hence, it must always take a collective, in this sense an abstract, view of health risk. This risk can only be expressed as averages and will always be at variance with the view taken by any of the unique individuals in the population. It is the population whose general or common health the public health project is aiming to protect and enhance.

Most of our data on health risk, whether we are considering the prognosis in a particular sort of cancer, or the damage from cigarette smoking, or harm from the ‘unwanted effects’ of effective medicines, are statements about groups, populations of people. The data describe an average experience of people in that population. They reveal nothing about the actual chances of any individual. Public Health, therefore, in addressing the problem of risk avoidance in groups, inevitably infringes the liberty of individuals who may not themselves actually be at risk, or who are not personally risk averse. Our appetite for paying for this public health in the currency of personal freedom is, therefore, analogous to our appetite for paying taxes. It will all depend on how much we are invited to pay, and for precisely what purposes.

Just as there is moral hazard in confusing absolute with relative risk, so there is hazard in confusing associative and causative factors in disease. For example, in the case of coronary heart disease, we know that such factors as obesity, high salt intake, a cholesterol-rich diet, and a sedentary life, interact with each other, with environmental situations, and with the patients genetic make-up, in a very complex way. This stops short of constituting a description of cause. On this ground, much of the preventive medicine campaigns have been mocked in the name of robust scientific scepticism.

The scepticism is valuable. But I am unconvinced that it rocks the boat of ‘preventive medicine’ quite as dramatically as the sceptics suggest. Public health medicine is engaged in the attempt to change the behaviour of populations in order to confer benefit on unknowable individuals in that population. The proposition is that I purchase the better health of unknowable others at the cost of elements of my own freedom. Since I hold that man is a social being, I think the price fair, and do not even need to be reassured that one of the beneficiaries may well be myself.

But there is another political critique, and a telling one. McCormick points out that while we disdain the risks to health of those who smoke three packs a day and dine on hamburgers and chips, we ‘admire those who take approved risks – racing drivers, trapeze artists, mountain climbers’. He writes of ‘a new and growing health fascism’. Charlton quotes, with approval, Gerald Klerman’s reference to ‘pharmacological Calvinism’. Petr Skrabnek coined the term ‘coercive health’. The language of these commentators suggests passion, fear and anger. I am left with questions unanswered. Yes, I hold freedom more dear than health. But what sort of freedom is available to those whose health has been forfeit?

Budetti breathtakingly shifts the debate about health preservation and personal freedom, to concerns about planetary survival. He notes that ‘global development is largely seen as degrading the environment in ways that will diminish health’ and concludes that ‘measures to protect the public’s health necessarily involve constraints on economic development.’ 

In the NHS we are constantly arguing for greater resources to fund our burgeoning appetite for high-quality health care. This seems to be contingent on a steady growth in our private and public wealth. Yet Budetti warns us of the cost of such growth – a cost that may first be paid by the Third World, and eventually by us all in an unsustainable global environment. Such warnings are hard to hear against the general clamour in our First World for ‘progress’.

This global perspective provokes us to ask uncomfortable questions about the boundary of our concern. Instinctually we begin with family, and extend our circle of commitment to our friends and neighbours, perhaps to our local communities. But how far does this extend? It was perhaps with such a question in mind that Margaret Thatcher, the prime minister who gave her name to the libertarian tendency in British politics in the 1980s, famously asserted that there is no such thing as ‘Society’. The perspective of public health suggests that there is no such thing as the unconnected individual. However counter-instinctual, in the shrinking world of the new millennium the lines of our connectedness stretch far beyond the home, parish or nation. The insights of medical science demonstrate that to be fully human, to be healthy, we must connect and co-operate – that we can only function as part of a society, and that the health of one cannot be pursued separately from the pursuit of health for all.

In June we asked:

It could be argued that it was only in the final years of the twentieth century that psychiatry came to be grounded in medicine’s science. Insights from recent techniques of brain imagery and the genome project have begun to suggest the anatomical and biochemical locations of our feelings and behaviours. To date, psychiatric diagnosis has been largely an empirical and phenomenological exercise. The doctor observes behaviours and elicits thoughts and feelings from which he deduces a diagnosis.

There have been brave attempts to standardise these procedures – for example, indices of ‘depression’ or ‘anxiety’ or ‘dangerousness’ based on the responses to questionnaires. The intention here is to minimise the role of the doctors’ perceptions, choices, prejudices. Psychiatry still awaits the twenty-first century equivalents of those biochemical tests, electronic tracings and three-dimensional images that currently grace our diagnoses of heart disease and the like. I would argue that much more than in heart disease, psychiatric diagnosis depends on something as hard to pin down as ‘feel’, ‘experience’, ‘clinical judgement’. In fact, there is good evidence that the ascription of psychiatric diagnoses by both general practitioners and psychiatrists is a pretty hit-and-miss affair. This is not to say that the quality of the treatment of these patients necessarily suffers from this diagnostic anarchy – only that there is diagnostic anarchy.

It was these uncertainties – the mixed clinical and political nature of psychiatric diagnosis – that lay behind many of the questions posed for this event. Jonathan Glover, a philosopher with a particular interest in the nature of human identity and the ethics of mental health, focused on the social and legal control of people deemed to be dangerous. Such people are variously described as ‘psychopathic’ or suffering from a ‘severe anti-social personality disorder’. He spoke against a background of current concern about the Government’s proposal to detain such people compulsorily, not on the hitherto firm ground that they had committed an offence, but on the uncertain ground of their estimated propensity for harmful behaviour. A key problem is that the instruments developed to assess the dangerousness of individuals are imperfect.

Glover quotes the following figures and poses some hard questions. Of 300 people detained under the proposed arrangements, 200 would have gone on seriously to harm others. One hundred would not. Glover asks: ‘Is this margin of error acceptable when people’s liberties are at stake?’ 

Earlier I had invited Jonathan Glover to hold an ethics seminar for a group of academics and professionals who were researching these problems. Playing one of the mind games that philosophers love to employ, he invited us to say which of the following two interviews we would least wish to have to conduct. The first was with a man detained in a mental institution for more than half a lifetime, on the ground of potential ‘dangerousness’; in fact, he would have harmed no one had he lived free. The second was with the mother of a child who has been savagely beaten and raped by a man whose test results had suggested this danger. But, in the name of the sanctity of civil liberty, he had not been detained. The choice before government is a policy that takes public safety as an overriding priority, or one that puts civil liberty first. Either policy (for safety or liberty) must comprehend one of these two ruined lives.

I found another of Glover’s use of statistics arresting. The Government’s proposals for a preventive detention policy will avoid 200 of the 57,000 violent crimes committed each year. A reduction of the urban speed limit from 30 mph to 20 mph would reduce the deaths of children hit by cars from some 50 per cent to 5 per cent. He argues that a speed limit of 20 mph ‘would avoid far more death and injury than the Government’s psychiatric proposals’.

Once again, as so often in deliberations about the ethical dilemmas posed by medicine, the data may suggest answers in terms of populations, but are silent when it comes to the specifics of individual chances and choices. Even the proposed mind games elucidate only our individual fears and prejudices.

Glover reminds us that all research into the natural histories of violent and dangerous people reveal that they themselves were victims of aggression earlier in their lives – and almost always of their own dysfunctional families.

It was an imaginative stroke to give us, at first under some disguise, the family history of Adolph Hitler. Imaginative because it seemed to explain a great deal about his make-up, and in a chilling way I found that it certainly made him recognisably human. Evil, of course, is a concept from religion, not science. Yet it is hard to contemplate the behaviour of those described as suffering from a severe anti-social personality disorder, without challenging the science that offers us the language of the damaged personality, in preference to the religious concept of evil.

Nonetheless, I passionately hold that the language of mental illness in respect of those with severely disordered personality is superior to the language of crime and punishment – despite psychiatry’s relative clinical impotence in the field. A medical diagnosis offers the hope of change, while, for the greater part, prison offers only punishment and containment. Society and victims have just cause to wish to punish those who have harmed them, and society needs to be substantially protected from their threat. But without the hope of treatment, even when treatment seems a distant hope, the otherwise purposeless containment of the inhumane threatens our own humanity.

Michel Foucault traces the modern European hospital to its roots in the medieval Lazar houses. As leprosy receded southward, these lazar houses became vacant. By the eighteenth century they were being transformed into the lunatic asylums. The non-conformism of the mad, who had previously had a recognised place in communities, became increasingly irksome to those creating the orderly machineries of State. Foucault describes this as the ‘great containment’. This link between politics and the perception of mental illness surfaced when one of the panelists offered the following:

Schizophrenia among UK resident Afro Caribbeans is in fact six times higher than among rest of population. But this is not true when Afro-Caribbeans live in the Caribbean. The high UK schizophrenia levels are therefore linked to the experience of being black and living in the UK – a society still generally perceived as racist by Afro-Caribbeans living here.

In fact, the propensity of an indigenous psychiatric culture in the UK to label Afro-Caribbean’s as ‘schizophrenic’ is reversed when it comes to the diagnosis of severe anti-social personality disorder. Surveys of special hospitals and prisons suggest that where a person with severe anti-social personality disorder ends up in the system cannot be predicted on the grounds of the severity of the crime or the dysfunction of the offender. Unconscious racial stereotyping may be at work.

Another contributor offered us this:

Glover’s questioning of motive in psychiatric diagnosis, and the hidden influence of our culture and the drive to conform with it, was taken up and developed in a different direction by our second speaker. Kay Redfield Jamieson is a Professor of Psychiatry at Johns Hopkins University. She began: "I am a scientist and a clinician, but I am also someone who suffers from a severe mental illness, manic depression. My remarks will reflect these very different perspectives."

She dealt with two themes. First, suicide and our failure to prevent an epidemic of self-destruction among so many (especially young) people. Second, the relationship between mental illness and creativity.

Her use of statistics shocks. Suicide in the US is ‘the third major cause of death in 15–19 year olds, and it is the second leading cause of death in college students … across the world, in those between the ages of 15 and 44, suicide is the second leading killer of women and the fourth of men’. It seems that the failure to prevent suicide reflects the stigma that attaches to mental illness in our society. I would also add, in Anglo-Saxon culture, to the expression of emotion. Jamieson refers to the array of effective psychotropic medicines and psychotherapies available to treat the underlying mental causes of suicide, and contrasts this with the failure of public health interventions. Again, we are brought face to face with the paradox of the clinical and the political tasks of medicine.

In passages that crackle with their own poetic creativity, Jamieson calls in support of her association of madness and creativity, great poets, painters and thinkers. As with Glover’s contribution, one senses an underlying sympathy with the mood music of the 1960s, and with R D Laing’s romantic notion of schizophrenia as alternative artistic, even spiritual, enlightenment – though both would, I think, sharply distance themselves from the inferences about the nature and causes of mental illness that Laing drew.

The message from both Glover and Jamieson reprises the warnings given in earlier sessions when we had contemplated the future elimination of ‘bad’ genes: when the genetic locations of schizophrenia and manic depression have definitively been found, we should be wary of attempting to exclude these components of our humanity. The harm they inflict on a minority may be immeasurably outweighed by the potential benefits to the majority in the generation of creativity, adaptive risk-taking and social cohesion.

In October we looked at the links between the quantity of a life’s span and its quality. We asked:

We chose as our first speaker Dr Bert Keizer, who has written much about the medical task at the end of life, and whose name is associated with the growth of euthanasia in Holland. It was, therefore, scarcely surprising that much of the evening was taken up with talk about the morality of a voluntary purposive ending of life, and the quality of life’s ending.

In a lucid set of propositions from Dr Rowan Williams, Archbishop of Wales, we were offered reflections on the quality of a life and a death, and also, what seems to matter so much to the suffering patient, something about our perception of life’s meaning. In this the Archbishop made clear the part played by religious belief.

There can be no doubt about the deep controversy that Bert Keizer’s views can engender. On the evidence of that October evening, there could also be no doubt about the genuineness of his humane concern for his patients, or of his anger at the arrogance and stupidities of much modern medicine. His case, that we be allowed help to die as far as possible as responsible adults in some command of our lives, and deserving of respect and dignity in our dying, was made with persuasive force.

The Archbishop held that, in the Christian view of life, euthanasia was unacceptable. For Keizer, to deny the suffering patient the option of euthanasia could be inhumane. What characterised the ensuing discussion between them, the panelists and the audience, was the shared recognition that these issues are too painful and important for brassy rhetoric, and too imminent for us all to admit of evasion and fudge.

Having in the first half of his address listed modern medicine’s inability to intervene curatively in so many contemporary plagues, in the second half Keizer allowed two stories to persuade us of the dangers of a biomechanical medicine, divorced from the biography of the patient. The first story was the record of Byron’s death at the hands of his doctors in 1824. It was an all-too-familiar account of the best that medical expertise then had on offer: bleeding by cutting open the veins, applying leeches to the scalp, bowel purges, blistering of the skin and the like. This was a euthanasia as unintentional on the doctors’ side as it was involuntary on the patient’s.

Keizer then rolled the calendar forward 170 years to 1994, and described the shocking, though again unintended, torture of his own father at the hands of doctors whose belief in their high technical nostrums was no less genuine and convinced than that of Byron’s doctors in theirs. And no less misplaced.

It became clear that in Keizer’s view, euthanasia was more than the option of a gentle and timely exit from a life already drawing to a suffering close. It was as importantly the means of rescuing us from the torturing consequences of modern medicine’s technical extravagances at the ebbing of our lives.

The powerful seductions of medicine’s technology can come dressed in strange guise. This was an illustrative story discussed subsequently by the panelists. Some months earlier, a 15-year-old girl dying from heart disease had refused to accept a heart transplant because she could not contemplate living with ‘a dead person’s heart’ inside her. The notion was repugnant and she preferred to die of her disease. In the event she was deemed too immature to make this judgement, and persuaded to accept the treatment – which, by the way, will entail her having to take a complex regime of immunosuppresant medication for the indefinite future, with its attendant distressing side effects. In one study the commonest cause of renal transplant rejection was found to be a failure of the patient to adhere to such a difficult and unpleasant regime of medicines.

Williams quotes with approval Ernest Becker’s broadside: ‘psychiatry which give[s] us so many of the tools we need to understand our terror of death and the mechanisms of avoidance, has itself become a mechanism of avoidance.’ I detect some ambivalence here. Psychiatry, and in the USA particularly the psychiatry of the Freudians and their many analogues, has often seemed to take upon itself the role of a new secular religion, with offers of insight as salvation. Yet the thesis that Williams develops seems to echo the language of the Freudians. This is scarcely surprising when one recalls that Freud’s term ‘psyche’ has persistently been mistranslated from its German context as ‘mind’. Freud used the term ‘psyche’ to mean ‘soul’. Williams says that: ‘the bare fact of suffering is first and foremost a moral challenge: can this be taken into the picture I have of myself, can I make my story out of this?’ The task of life becomes increasingly clear to us precisely because we are to face our death: ‘as I discover that I shall die, I return to question what I hope for my life.’ 

These ideas stirred strong memories in me. The tasks of the general practitioner are simultaneously biographical and biomechanical. For the patient who comes to have intimations of her death, the end of life may pose a question framed in both meanings of that word: the end as finality, and the end as purpose. Her suffering does indeed present a moral challenge, but it also cries out for technical help.

I was intrigued to learn how Archbishop Williams would argue against euthanasia without reference to divine authority – which would have left this non-believer with nothing but the void of his unbelief. In fact the argument, when it came, was powerful and cogent, and if it did not totally persuade me, it certainly gave great cause for more thought.

He based his case on the view of the human as innately social: ‘for all the major religious traditions, the good is achieved only by corporate action.’ This social perspective sees each of us as deeply implicated in all the others – and I could not help wondering, ‘does the Archbishop really mean all the others?’. I suspect that he really does, and it leads him to assert: ‘The substantial goods of the moral world cannot be attained by summing up or adding together sets of individual achievements.’ He concludes that his ground for finding euthanasia wrong is ‘not even the belief that life is "sacred", but the belief that lives are deeply implicated with each other to the extent that violence against oneself (even in extreme circumstances) has to be violence against others as well’.

The humanity of Keizer, the doctor, and Williams, the priest, shone through the debate that followed. I was left uneasy by the thought that bringing a wretched terminal illness to a purposive and accepted and peaceful end could be seen as violence to the self, and therefore to others. I doubt that it felt like that to Bert Keizer and his patients. But I was also left uneasy by the thought that my assumption that the doctor’s first response must be to relieve the suffering by whatever medicines he can employ, may reflect a mechanistic view of that suffering which rather misses the point.

In November, to conclude our series of debates, we came home. The teaching hospitals of Guy’s and St Thomas’, and Southwark Cathedral, sit on the South Bank of the Thames in south-east London. The sparkling new university buildings and towering cliffs of Guy’s Hospital, architectural sculptures in glass and steel, are stunningly arresting. The majesty of the Cathedral, refurbished for the Millennium, its ancient stones scrubbed bright and golden, speaks of strong faith in a good future. The neighbourhoods show, almost cheek by jowl, the wastelands of poor public housing, and designer chic apartments in the loft conversions on the waterfront. The inner city population immediately served by our teaching hospitals and the Cathedral is multi-ethnic in origin, and poverty and wealth, good citizenship and social exclusion, live side by side in many of its streets. We looked at the impact of city life on health, and asked:

Our speakers developed complementary themes. Julian Le Grand, Richard Titmuss Professor of Social Policy at the London School of Economics, examined in some depth the evidence that cities were unhealthy places. In fact, as both speakers had found, the data could be interpreted in a number of ways. The health of city people was not always demonstrably worse than that of country people, though the trend in most studies suggested that it was. There was, however, another finding with profound implications for future public policy. Le Grand found that ‘those in urban areas – that is, in cities – feel in worse health than those in rural and suburban areas, but are actually in better health.’ This paradox sets a puzzle: ‘Why are the inhabitants of cities getting better but feeling worse than their country brethren?’ 

Our second speaker, Victor Rodwin, Professor of Health Policy and Management at the Wagner School of Public Service at New York University, asked: ‘Are cities socially infected breeding grounds for disease?’ and concluded that they were. In New York, London, Paris and Tokyo there is failure to deal adequately with fresh epidemics of infectious diseases, including AIDS. There are problems with water and air pollution, homelessness, poverty, the exclusion of ethnic minority groups, and terrorism. Chillingly, he reminds us of the World Trade Center bombing in New York, and the release of sarin gas in Tokyo’s subway system. All this in the context of growing socio-economic inequality. Implied is the question: ‘Is this context or cause?’ Implied also, and intriguingly, is the link that Rodwin makes between TB and AIDS, which can be described in terms of a biomechanical model, and urban terrorism that cannot.

The nineteenth century German pathologist Rudolph Virchow famously averred that medicine was a social science. He had been invited to investigate the causes and containment of a typhus epidemic among immigrant Polish workers in Silesia. Doubtless to the consternation of the Prussian government that had commissioned him, his recommendations were concerned not with biological control, but with ameliorating the hardships and injustices experienced by the workers. In his report he advised improving their education, increasing their income, involving them in local politics, and accepting Polish as an official language. What model of disease could possibly have linked denying the use of a mother tongue with the severity of the typhus’ contagion in that group? What linked the insights of Virchow, the political radical, with those of Virchow, the medical scientist?

These yoked insights (TB and terrorism; typhus and political exclusion) echoed again in Le Grand’s preferred explanation for his paradoxical findings about the health perceptions of city dwellers – that they are getting better and feeling worse. He believed that the concept of ‘social capital’, and its absence from the lives of most in our urban ghettos, could be the key to solving what he describes as his ‘puzzle’. He quoted the description given by Robert Puttnam, the originator of the idea: ‘the features of social life – networks, norms and trust – that enable participants to act together more effectively to pursue shared objectives’.

In a key passage in his address, Le Grand links a sense of well-being to social support and civic engagement, and quotes many studies whose findings support this contention. In recent years, and in similar vein, John Howie and colleagues in Edinburgh, seeking to measure the quality of consultations between doctors and patients in a deprived inner city environment, evolved the concept of ‘enablement’. R G Wilkinson, writing in 1992 about the link between income distribution and life expectancy, commented: ‘The social consequences of people’s differing circumstances in terms of stress, self-esteem and social relations may now be one of the most important influences on health.’ It is not the material consequences of exclusion that seems to do the damage as much as the self-awareness of it.

Our speakers were leading us toward their preferred (and largely shared) remedies. The notion of social engineering, rather like the notion of genetic engineering, may start with high ideals and end in something unrecognisably awful. But there are precedents that may allow us some optimism. Rodwin refers to a paper given in 1875 by Benjamin Ward Richardson, a disciple of Edwin Chadwick. He says that in Hygeia: A City of Health, Richardson’s vision of a city designed for health inspired Ebenezer Howard and the garden city movement of the 1890s, and perhaps, in the late 1980s, the World Health Organisation’s ‘Healthy Cities’ movement.

Le Grand concludes that the improvement of health in the city lies in linking health with empowerment. Better health empowers people, and empowering people gives them better health. Yet again, as in all our previous debates, we returned to seek ways of curtailing the control of state and the professions in order to make room for the health, the self-actualisation, of the individual. And yet again, we were made aware, at every step, of the need to curtail the self-actualisation of the individual, in order to make room for the flowering of a healthy and co-operative society.

This has been a very personal reflection on a series of debates to which I could never do justice here. Our intention was to open up for public examination those aspects of medical advance and social change that will profoundly affect the lives of us all. In particular we were concerned to reach out to our own local communities, to invite its citizens to share in the debates, and to encourage them to take these further in their many social and civic encounters.

This was not an exercise that permits me to sum up. That would be not only premature but impudent. The debates will only have been successful if they remain (perhaps permanently) unfinished, and if no one appropriates to herself or himself the power definitively to decide. What will remain of importance in what we undertook, and may be of some enduring value, is not the answers that we gave, but the care with which we framed and will in future re-frame the questions.

The German Protestant theologian Paul Tillich said that he had lived his life on many boundaries – between socialism and capitalism, between the Old World and the New, between art and science, between the spiritual and the materialistic – and he concluded that the boundary was the best, the most exciting, place to be. It is on boundaries (and perhaps only there) that discovery happens. In our millennial programme we stretched, as far as were able, towards the imminent boundary with our future. Sometimes, I think, we may have glimpsed the limits of what’s human.

I am deeply grateful to our distinguished speakers and discussion panel members, and to the six audiences, on whose ideas I have drawn freely, and in the most biased of fashions. To Professor Sir Cyril Chantler, Dean of the Medical School throughout the period of the Festival, and the Very Reverend Colin Slee, Dean of Southwark Cathedral, I owe large debts of gratitude for their support and good friendship, and for their critiques of an early draft. They bear no responsibility for the many shortcomings of what I have written here, but they have saved the reader from far worse.