A few years ago an American physician, Leon Kass, drew attention to a remarkable paradox: that at a time when medical knowledge is greater and technology more powerful than ever before, medicine is assailed by doubts about its role and purpose. Some reasons for the doubts are clear enough: uncertainty about the respective responsibilities of public and private agencies for the finance and administration of health services; rapidly rising costs of medical care and the lack of an acceptable basis for limiting them; gross inequalities in health between continents, between countries, and between different sections of the population of the same country; ethical issues which arise particularly from the ability to prolong or terminate life; and formidable problems of litigation attributable to the difficulty of distinguishing clearly between errors of clinical judgment and negligence. But perhaps the most telling source of uncertainty about medical activities is the possibility that we have overestimated what has been achieved, indeed what can be achieved, by treatment of the sick. We begin to suspect that some disease problems may prove to be, as J.B.S. Haldane said of the universe, ‘not only queerer than we suppose but queerer than we can suppose’.
These issues have attracted the attention of many critics of medicine – a term applied indiscriminately to all who question the conventional reading of medical goals and achievements – and most of the points discussed by Ian Kennedy in the 1981 Reith Lectures have been raised before. Nevertheless, his legal approach is novel, and the lectures themselves were well-organised and delivered with remarkable force and clarity. Whatever their reservations about the conclusions, many doctors will have been glad to hear these important matters examined before a large general audience. The book now published comprises the lectures, slightly extended, a bibliography, and an additional chapter which enlarges the discussion of three topical issues: the role of technology in medicine, the care of the dying and the determination of death.
It is pointless to object that Kennedy writes as a lawyer rather than as a physician or administrator: that he does not, for example, present the grounds for thinking that the main determinants of health are outside the medical care system or discuss ways in which the right balance could be achieved between preventive and therapeutic measures. His stance is that of a prosecutor who accuses the medical profession on two main counts: that they have taken the wrong approach to the preservation of health and that they have usurped the rights of the public by accepting responsibility for many moral and ethical decisions which are quite outside their field of competence. He is somewhat disarmed from the outset by the fact that many doctors readily concede some of the points on which he bases his case: that concepts of illness and health are imprecise and involve social and economic as well as medical judgments; that much greater emphasis is needed on the prevention of disease and the promotion of health; that many problems with which medicine is faced – contraception, abortion, screening for disease, prolongation of the lives of the handicapped, the control of technology, and so on – are matters for public debate and decision. There are, nevertheless, several issues on which sharp differences of opinion are likely to arise.
Perhaps the most basic, certainly the most sensitive question is the regard in which medicine is held. Does it justify the respect it has usually been accorded? Illich took the view that, on balance, medicine does more harm than good and that little would be lost if most of its services were abandoned. Kennedy has the good sense to put some distance between himself and this position, although he comes perilously close to it when he writes that ‘the nature of modern medicine makes it positively deleterious to the health and well-being of the population.’ I do not believe that this view is consistent either with an objective appraisal of medical achievement or with experience of the care of the sick at home or in hospital. Without the understanding provided by medical science our hold on the developments – nutritional, environmental, behavioural and medical – which have transformed health since the 18th century would be as precarious as the advances in Roman hygiene proved to be, and there must be few people who complete their lives without having reason to be grateful to the medical and nursing services for their own or their relatives’ personal care. ‘It is hard to avoid the conclusion,’ Kennedy says, ‘that the National Health Service has failed us’: a statement that could hardly have been made by anyone old enough to have had personal experience of the situation before the 1948 Act. For all its faults, the NHS has made medical care available to everyone and has removed the burden of direct payment from the large number of people who could ill afford it – an achievement which has not yet been matched in some of the wealthiest countries.
It is also unfair to condemn medicine on the grounds that it has failed to recognise, not merely that it is better to prevent than to cure, but that with many diseases it is essential to prevent because we cannot cure. In their assumptions about the determinants of health, doctors have been under the same misapprehensions as everyone else. It is only recently that we have become aware that the doubling of life expectancy since the 18th century was due essentially to the reduction of deaths from infectious diseases, and that the infections declined mainly because of control of the conditions which led to them: insufficient food, poor hygiene and unrestricted population growth. And we are only now beginning to realise that the infections are still the predominant health problems of developing countries and must be tackled in the traditional ways, and that the non-communicable diseases which have partially replaced them in the developed world are also in principle preventable by modification of the influences which lead to them – the profound changes in behaviour and conditions of life associated with industrialisation. As these matters are still under investigation and debate, it is hardly surprising that medical education, research and services are based on quite different premises.
Kennedy is critical of medicine’s failure to transfer attention from treatment of the sick to preventive measures, and implies that if the latter were fully exploited there would be little need for medical care. I once heard Lionel Penrose say that anyone who thinks that the provision of community services will make it unnecessary to have hospitals for the mentally handicapped is living in a fool’s paradise, and the same might be said of anyone who believes that disease prevention will remove the need for personal care. Even if preventive measures were as comprehensive as we should like them to be, and so successful that we rarely encountered disease or disability attributable to the twin threats of poverty and affluence, there would remain the formidable problems of illness determined before birth or associated with the end of life. The care of the sick is, and will remain, the central medical task, requiring large resources and the attention of most doctors.
Whether resources should be transferred from treatment of disease to the more effective preventive measures is a difficult question. Acute medical services are not all of a kind. Some, such as accident and emergency services, are among the most valuable measures that medicine can provide and any reduction of support would be deplorable. Other services have never been evaluated, and we simply do not know whether they are effective. Still others are known to be ineffective and undoubtedly waste resources. What is needed is a more accurate mapping of the effectiveness and efficiency of clinical services, an approach which can be used with new developments but which presents formidable technical, ethical and administrative difficulties when they are applied to existing procedures.
Kennedy is nevertheless quite right in thinking that it is to preventive measures that we must mainly look for further advances in health and that medicine has not yet come to terms with this requirement. Indeed, confronted by the conclusion that the main determinants of health are outside the personal care system, some doctors would like to define their role in such a way as to exclude them, limiting medical responsibility to the diagnosis and treatment of disease in individual patients. They consider that having this role they cannot be held responsible for health maintenance in well people, or for non-personal services in the community at large. It is not a denial of the importance of these services to assert that they are incompatible with the day-to-day work of the clinician. But medicine as an institution should not be equated with clinical practice. The doctor who treats sick people cannot be expected to advise on national food policies, changes in the environment and modification of behaviour, although an understanding of these predominant influences on health seems as relevant to his work as a knowledge of the chemistry of the drugs he uses. (An experienced clinical teacher once told me that he had to relearn his chemistry before each lecture in which he taught it.) There are, however, compelling objections to limiting the institutional role of medicine in the same way, for there would then be no profession concerned comprehensively with health matters, and there would be a particularly regrettable division between professions dealing with the prevention and treatment of disease. Education and training of health workers of different types would become even more widely separated than they are at the present time, and medical research would be increasingly polarised towards investigation of disease mechanisms, with serious risk of neglect of disease origins. Indeed, it is an more unfortunate feature of the contemporary professional scene that its colleges, faculties, associations and societies all represent sectional interests and provide no forum for consideration of the important issues which should be the concern of medicine as an institution.
For so trenchant a critic, Kennedy is surprisingly uncritical of some of the approaches currently advocated for the promotion of health. For example, he appears to believe that the control of advertising would reduce significantly the use of tobacco and alcohol. There is a far more effective measure which should be the main objective of health educators: the elimination of photographs of people smoking and drinking from newspapers, films and television. The image of popular figures such as Glenda Jackson and Dave Allen with cigarettes constantly in their hands or mouths contributes powerfully to the notion that smoking is an agreeable and acceptable feature of normal social life; and Dallas, in which bourbon is liberally poured at short intervals to assist the principal characters ‘the better to enjoy life or the better to endure it’, has done more for the sale of whisky than all the paid advertising of recent years. With gratuitous support of this kind it would not be surprising if the tobacco and alcohol manufacturers regarded their vigorous defence of advertisements as no more than a minor skirmish, designed to divert attention from the main event.
Kennedy also accepts, apparently without reservation, the case for immunisation against whooping cough, believing that the numbers of children damaged by the vaccine ‘were very few as compared with the millions who benefited without ill-effect’. It can hardly be claimed that millions have benefited in a disease from which mortality had fallen to a low level before immunisation was introduced, and recent estimates suggest that the risks from the procedure are far from negligible. Nevertheless, the committee which examined the evidence in Britain has recommended that vaccination should continue, although a different decision was reached in some other developed countries with comparable standards of living and experience of the disease.
Kennedy’s second main charge is that most decisions taken by doctors are moral and ethical rather than technical. The examples he cites hardly bear this out, and it would be more accurate to say that many medical decisions are moral and ethical as well as technical. Whether to prolong the life of a handicapped child by surgical intervention is certainly an ethical question, but the answer may be influenced by the skill of the surgeon and an estimate of the extent of the residual disability. However, most medical people would probably agree with the conclusion that ‘the principles by reference to which doctors act must be the product of general discussion and debate.’ The question remains whether doctors have wilfully usurped authority and whether general principles can be established which would largely remove the need for medical decisions or advice when ethical and moral issues are involved.
Doctors are neither better nor worse than other men, and in a situation in which power over others can be taken, undoubtedly some gladly take it. But I do not believe it is correct to say that most doctors have sought responsibility for the complex decisions with which they are faced, and I have no doubt that many would be relieved if some of the responsibilities could be removed. Kennedy refers to ‘the monopoly power to confirm or deny the presence of illness’ in a worker. Ironically, at the present time general practitioners are causing some embarrassment to the Department of Health and Social Security by insisting that they should no longer be required to certify short-term sickness absence. It is the employer, soon to be made responsible for sick pay for the first eight weeks of illness, who may be unhappy if they refuse to do so.
The difficulty of establishing general principles which would eliminate or greatly reduce the need for medical decisions is well illustrated by the treatment of the congenitally malformed, which Kennedy discusses at some length. About three in every hundred children are born with recognisable physical deformities, which vary from a trivial blemish of the skin to a serious condition of the heart or brain. Most of these abnormalities raise no large medical or ethical issues, either because they present no threat to the quality or duration of life, or because they are so lethal that effective medical intervention is almost inconceivable. The proportion of malformed children whose lives can be substantially prolonged by treatment is certainly not more than one in six and is probably less than one in ten. Against this background there are three possible approaches to the problems of the malformed: prevention by contraception; elimination by abortion; and treatment from birth. At present prevention of conception of the malformed is rarely possible. A few can be recognised in early pregnancy when abortion is feasible. But the problem of the malformed is essentially the problem as it presents itself at birth.
There is no dispute concerning the treatment of most malformed children. No one is likely to question the desirability of closing a cleft palate, or of surgery in congenital heart disease when an operation may offer the prospect of a normal life to a patient who would die if untreated. The problem arises where the outcome of treatment is the survival of children with serious physical or mental handicaps, and this occurs most frequently with the malformation of the central nervous system known as spina bifida. It has come to have something of the status of a test case. I believe that most doctors accept that children with spina bifida must be cared for, although many would endorse the view once expressed by Cardinal Griffin, that this does not mean that the lives of those cruelly disabled must in all circumstances be prolonged by active surgical intervention. Whether such measures should be applied, they would regard as a decision chiefly for those affected, or, if they cannot represent themselves, as in the case of spina bifida, for the parents. In practice, the weighing of the complex medical, ethical and other issues is often impossible for the distraught parents and they turn to the doctor for advice. But it is a gross distortion to say that doctors regard this as rightfully their decision, ‘so that others intrude at their peril’. Many doctors would be delighted if this burden could be removed from them, or if the profound issues could be resolved by public debate. There have indeed been several meetings, some organised by the Department of Health and representative of the public as well as of the related professions, which have attempted to find principles which could be applied consistently and humanely to the care of the malformed. But what can be written in general terms that will apply in all cases and remove the need for individual decisions? That all children who will have residual handicaps must be treated? Or that none should be? Or is there a definable position between these extremes which would not turn on medical judgments? The range of public opinion is as wide as the range of medical opinion, and the anguished parents, assisted by their doctor, will still be left to make the critical decisions at the bedside.
Moreover, some account must surely be taken of the doctor’s religious and ethical convictions. A Catholic obstetrician cannot be forced by public decree to perform an abortion which is against his principles, and a surgeon who has himself suffered from a physical handicap can hardly be instructed to refrain from treating a malformed child whose prospects he believes he can improve. What can be asked is that he has an accurate appreciation of the consequences of his intervention before he gives his advice: that in spina bifida, for example, he does not retire behind the euphemism ‘acceptably dry’ when assessing the results of treatment of an incontinent child whose mother has to live with the reality of persistent bed-wetting.
Kennedy regards the withholding of information as another example of medical intransigence, ‘a device created by doctors to do what is in the best interest of doctors’. Certainly one should tell the truth: but to insist always on telling the whole truth shows more concern for one’s own peace of mind than for that of others. Kennedy agrees that there must be exceptions in practice, but thinks they should be uncommon and established by public debate rather than by doctors’ decisions. Lack of information is one of the most common criticisms of the National Health Service, and it is undoubtedly wrong to withhold information from a patient who would like to have it. But it is equally inexcusable to force it on one who would much prefer not to know. Kennedy is no doubt correct in thinking that knowledge is sometimes mistakenly kept from patients, particularly the inarticulate, who do not ask for it. But there are mistakes on the other side. I was told recently about a patient in hospital to whom a consultant, after some hesitation, revealed the serious nature of his illness; he was greatly relieved by his impression that subsequent discussion with the patient and his wife had become much easier. However, the general practitioner is now caring at home for a depressed patient who turns his face to the wall when his illness is mentioned.
It would surely not be in the best interests of most patients to reveal the countless pieces of information which may accumulate in the course of investigation and treatment, or to refer to grim possibilities which may cross the doctor’s mind, and of which the vast majority will prove to be groundless. As any sensitive medical student soon learns, it is one of the prices of his education that he has to live with anxieties about risks of which he would much rather be unaware. One can imagine the lines that Proust’s account of his illness might have taken if he had had a medical training.
The slight nausea and abdominal discomfort which formerly I would have ignored may be the first indication of a condition so sinister I dare not name it; at one time I would have dismissed the pain in my shoulder as a trivial affliction, but the last patient I heard describe this symptom as rheumatism was dying with secondary deposits in bone; the prodromal symptoms of coronary artery disease are not at all well understood and my occasional feeling of faintness may be a warning of a first attack; or of an impending cerebrovascular accident. It is no consolation to know that I cannot have all these disabilities, and there is little comfort for a hypochrondriac in being told that he is quite likely to die from a disease he never feared, a remark which can only extend the range of his suspicions.
The public’s right to debate, and as far as possible make decisions about the uses of medical information, is indisputable. But unless it is decided that everything must be revealed or that nothing must be revealed we shall be left with an intermediate position. I suspect that it will be close to the one now taken by many doctors: that patients should be given information if they ask for it, if the management of their affairs makes it desirable, or if they are likely to be happier or less unhappy by knowing than by not knowing. The last admittedly turns on a subjective assessment of a patient’s probable reaction, a treacherous judgment in which mistakes may easily be made. But who is to make this decision if not the doctor?