COMMUNITY HEALTH STUDIES VOLUME rr, NUMBER 2, 1978

THE CONSUMER AND THE HEALTH CARE SYSTEM

Erica Bates+

All over the developed world a new movement has begun. After some fifty years of leaving everything to the professionals, of training specialists and super-specialists to deal with technical matters, there is recognition that the professional can perform only limited services for the layperson and that decisions have, in the end, to be made by the people whose lives will be most affected by those decisions. The early famous consumer successes were won by Ralph Nader against General Motors in the United States: he showed that professionals were not always working in the best interests of the public, that there were sometimes serious conflicts of interest between professionals and consumers, and that the intelligent consumer could no longer merely put himself in the hands of the licensed professional and expect that all would be well. In Australia the consumer movement is now generally well established. We have ombudsmen at Federal and State level to protect the public from civil servants, and we have consumer groups like The Australian Consumers’ Association who test consumer goods and report on them for members.

In the special case of health care, public expectations of medical treatment today are, perhaps, too high. Health care is now seen as a basic right, and frequent statements to this effect are made, for example,

our basic premise (is) that everybody should have the right to quality health care on the basis of need rather than ability to pay. We assume that the right to physical and social well-being is so widely accepted as to require no argument.[l]

This is really an extraordinary statement. Never before in any human society would it have been said that everyone has a right to health and happiness-this was a gift of the gods for which those who were lucky enough to have attained it, were profoundly and humbly thankful. And in our society, although a surprisingly large number of people do achieve at least a reasonable degree of health and well-being, expectations rise as each new stage is reached.

These attitudes are interrelated with the whole pattern of social attitudes in industnaked societies. Several factors are associated with these attitudes. The first is that we have almost eliminated early deaths. Hence people regard

BATES 73

more seriously their minor illnesses and discomforts, and demand that these should also be cured rapidly. Secondly, advances in medical technology have increased the public’s confidence in medicine, so that the public believes that almost any problems can be cured. Thirdly, the old British and Australian ethic of a stiff upper lip, and silent suffering is no longer part of our value-system. As one writer says “The public has been convinced that human suffering is a disease that medicine can cure.”[2] The major cause for this change in the health care system is probably the public’s perception of its own health. The general dissemination of popular radio and television programmes and magazines implies that the body is a frail and delicate instrument that needs constant careful fixing up by means of instant drugs and early visits to doctors. “There is a public preoccupation with disease that is assuming the dimension of a national obsession.”[3] This attitude has profound implications or the health and welfare systems in our society. It means that we can never satisfy every “health need” that is discovered, since as soon as one need is met, another surfaces. This attitude also has serious consequences for the consumer movement in health care delivery. Consumer movements in most other areas of modern society have a finite series of expectations and demands. They want, say, clean air, a certain number of national parks, fine food, value for money when buying a car, and so on. But in health care, the potential consumer demands are really unlimited. Hence any consumer movement in health care is in danger of being so unrealistic as to be easily ridiculed and, consequently, may lose any effectiveness it might have had. A number of warning lights have been flashed at the health consumer movement. Perhaps the most powerful is that of Ivan Illich in Medical Nemesis, (later retitled On the Limits of Medicine),[4] who sets out to destroy the myths that the more health care we get, the healthier we will be, that the more money we spend on health, the healthier we will be, that we need more doctors to keep our population healthy; and that the high-powered health technology for our society such as respirators, n u c l e a r m e d i c i n e u n i t s , m u l t i p h a s i c investigations and so forth, are helping to keep us alive longer, or even to live more comfortably.

COMMUNITY HEALTH STUDIES

The Notion of Counterproductivity

Illich's thesis is based on the economic notion of counterproductivity. This means that when the volume of production of any technical activity rises beyond a certain critical level, changes occur in the physical and social environment which make the whole system produce the opposite of what the original aims of the system were. Thus an excessive volume of education produces stupefaction and idiocy, an excessive volume of transport produces slow motion, an excessive volume of health care produces illness. In a society where there are only local healers who know the healing drugs a little better than the rest of the people, and who can do simple procedures to reheve suffering, people themselves learn to deal with their own problems and illnesses and the community's health-

hysical and mental-is high. The people are in Earmony with their environment, and stress illnesses do not develop as they do in a highly technocratic society. In a society where there is a reasonably low level of emphasis on the technology of health care, the health of the people improves, provided there is emphasis on such public health measures as clean water, good sanitation, good nutrition. At a slightly higher level, it is not harmful to introduce control of simple infections by drugs, and simple surgery to relieve pain or to cure relatively simple complaints.

But in our society the health system has become healthdenying, and is actually making society sicker. This happens in three ways. First, the health system produces clinical damage which outweighs its potential benefits; secondly it helps to conceal the political conditions-the effects of noise, stress, bad housing, bad diet and bad working conditions-which make society unhealthy; and third, the health system has removed from us as individuals the power to use our own immune system to heal ourselves and accept the inevitable problems of living.

The whole health system-or, as Illich would prefer to call it, the unhealth system- reinforces some of the most unhealthy trends in society. In particular, the system forces people to consume health care and thus to become "health consumers". By this very action, we accept the system at its own valuation, and delegate to "providers" the right to say when we are really ill, or well, regardless of how we feel ourselves. The care given by members of a family to each other-so-called "grundmu medicine"-becomes an embarrassment, to be laughed about. We cease to value the knowledge and skill we have ourselves and we fear the long words and jargon of ex rts, so we do not penetrate beyond the m y s t a t i o n to find the essential simplicity of achieving and retaining good health-by leading a life that is health-promoting rather than health- denying. We learn to feel that because we have

COMMUNITY HEALTH STUDIES 74

no health skills, we also have no responsibilities; we damage ourselves by stress, smoking and drinking and then hand ourselves over to the experts to be fixed up.

So, finally, to the strategies for change. How can we have a health system that is health- promoting and not healthdenying? Illich's basic contention is that we cannot keep up our high volume of medical services and at the same time discover health. The health system has become a radical monopoly; and "radical monopolies disable peo Ie from doing or making things on their own". 51 Hence, the first step toward the

bureaucratisation and de-professionalisation of medicine.

Someone putting Illich's theories into practice would place barriers in the way of easy access to health care, and would train few-d any-h ighpowered t e c h n i c a l d o c t o r s , concentrating instead on training large numbers of nurses and other less highly specialised professionals. He would abolish licensing and registration of health professionals and individuals would be free to choose their own healers and reward them as arranged between themselves. The state would no longer be responsible for the health care of ths individual, who would be responsible for his own health maintenance. The nghts of access to care and to competent care would no longer exist. No large hospitals would exist in central locations- rather, small health centres would be spread around the country to dispense simple care- such as setting of limbs, immunisation and emotional support. Because of the limitations of modem medicine, cancers and heart diseases, for example, would not be treated at all: r p l e would die a less painful death, says Illich, these diseases were left to nature's course-and this would give us more time to deal with preventable conditions and make simple interventions for everyone. Rather than allow a few wealthy people to have complex care (which in any case is of doubtful value), families would care for their sick members themselves. Illich would spread simple care among all the population. The self-help movements in all western societies are based on ideas similar to those expressed by Illich. In Australia the Autistic Children's Association, the Association for Relatives and Friends of the Mentally Ill (ARAFMI) and the Association for the Welfare of Children in Hospital (AWCH) are examples of the same movement.

Illich is firmly against any consumer movement in health care, saying that by organising such a movement, people are acce ting the system as a "given", and while they are [ghting to improve it, they overlook totally the need to dismantle the whole system. Consumers are, in fact, accepting the value systems apd premises of the providers, and the

making o P a healthy system is the de-

BATES

only way to avoid this is to refuse to become a consumer of health services and opt out of the whole s stem into an attitude of self-help and self-suffiyciency . Criticisms of Illich’s Theories of Social and Structural Iatrogenesis

There are, however, serious criticisms to be made about the conclusions to which Illich comes. m e Political Economy Critique

This is a basic critique of the adequacy of the theory of iatrogenesis as a way of explaining the exponential growth of health systems. The major exponent of this critique is Vincente Navarro, who blames the capitalist economy for the rise in health costs, rather than blaming the growth of industrialisation, as Illich does. 61

capitalist way of organising society. Continuous needs are artificially created by the companies’ need to make a profit-and it is the companies who manipulate the doctors, not the doctors who manipulate the patients. Thus, for example, drug companies must sell more of their products, so they manipulate doctors into over-prescribing. Suppliers of hospital equipment are continually developing newer and more elaborate machinery for earlier diagnosis and more intensive treatment-thus creating in hospitals a situation of rivalry which forces the hospital to provide the latest piece of technological equipment. Navarro concludes that the needs of the consumer are, in a capitalist form of economic organisation, subordinated to the needs of the system to make more profits by increasing consumption and creating insatiable wants. He suggests that the health system should be nationalised, that drugs be manufactured by the State and that the State should own hospitals and equipment and employ only salaried staff. Further, the health system in each society mirrors the power structure of that society as a whole. Thus, for example, in our society the health workers with highest power are doctors who are mostly male, middleclass and Anglo-Saxon, while the least powerful workers are nurse aides. who are generally female, working-class migrants. And the powerful groups, which include the corporations which manufacture drugs and equipment, the Australian Medical Association, and the health insurance industry, have a great stake-and spend an enormous amount of money on lobbyists-in order to maintain the system as it is. For example, in 1973 the AMA set up a Yighting fund” to pay for its campaign against Medibank, with a target of 52 million-which was not fully achieved, though the AMA has never revealed how much was actually raised. The AMA also has a very competent lobbyist in Canberra, who regularly puts the AMA view

Navarro says that dependence is a result o I the

when health matters are under discussion. The corporations work in a similar way. Hence the unorganised consumer will always be at the mercy of the more powerful organisations and all that would happen if Illich’s ideas were implemented is that, once more, the wealthier sections of the community would receive good health care while the poorer sections would be deprived of even the basic care that is now available to all the population.

7he need /or care not cure Illich’s theory does not take into account the

full consequences of the changing pattern of disease in industrialised societies. Since a high proportion of disease is now chronic disease, many individuals need some long-term care, and cannot help themselves, as Illich recommends: nor do they die quickly and get out of the way. Examples of such conditions are rheumatoid arthritis, multiple sclerosis, chronic bronchitis and many slowly developing cancers, and congenital conditions such as mongolism and spina bifida. Since Illich does not suggest actually hastening people’s deaths, some provision has to be made for the maintenance of these people. It is nonsense to talk today of families being responsible for their own members-the extended family has well and truly disappeared in our society. Houses are too small to accommodate ailing relatives; husband and wife are working; and there is no one at home to care for such people; often the family is scattered anyway. Hence, unless we are willing to see our maimed and ill lying in the gutters and dying in the streets, we have to make provision for their care. It is now generally accepted outside the health ressure groups that we should reduce

people believe that we should dismantle the system as radically as Illich wants to do. And if we aim for more care rather than more cure, we could reduce technology but retain a system that does take responsibility, societally, for our weak and ill members. However, at the same time, this new pattern of disease means that impaired people must take part of the responsibility for their self-care and maintenance. They cannot rely on professionals, or on their families for basic services for years on end-so they need help in learning to cope with impairments and handicaps to allow them to become as independent as possible. Suffering is not acceptable

Throughout his book, Illich emphasises that suffering and pain are positive rather than negative events and that if one deprives a person of the opportunity to suffer, one prevents him from developing fully as a human being. However, it is not really acceptable in terms of our culture, to deliberately wthhold pain relief so that people may suffer and develop their

some o P our high level health technology, but few

BATES 75 COMMUNITY HEALTH STUDIES

characters. It is true that our tolerance of any pain has become very low indeed, probably too low: we are urged “Don’t share your day with a headache” and there is a huge increase in the taking of both prescribed and unprescribed sedatives, painkillers and tranquillisers.[7] On the other hand, in all societies there is an enormous amount of severe pain and intense suffering, and the practising doctor in any society is asked to help the individual patient with his pain. Modern technology has enabled us to keep alive for much longer people with terminal and chronic conditions. Often this involves long periods of intense pain. Since the doctor has after all, been trained to help in such situations, it is his task to relieve the individual patient’s symptoms as best he can, because that is what our society wants him to do, and is what any person with compassion wants to do. In general, then, in our society people expect pain relief, whatever may be the cause of their symptoms. Societal dysfunctions

Illich’s thesis that the individual should be autonomous and self-reliant is all very well up to a certain point. But this does not reflect the reality of the power relationships in our society where the individual is mostly powerless to change his own circumstances. When workers are exposed to industrial poisons or residents of an area exposed to excessive noise or air pollution, then there will be no motivation for employers or governments to improve the environment if these individuals look after their own health and do not complain. Much disease and suffering in our society comes from widespread societal causes, and needs societal remedies. Apart from the widespread neglect of industrial safety, there are in our society such problems as the isolation of women (with its consequent epidemic of Valium- taking and child bashing) and large scale unemployment of young people (who begin taking drugs, drinking to excess, and engaging in violent acts to ease their boredom). Attempts to deal with these problems at a societal level must clash with a belief in the individual’s responsibility for his own welfare. Dangers in abolishing licensure of professionals

Illich’s suggestion that people should be left to find their own healers, none of whom would be licensed, ignores a number of very real problems in such a scheme. Most important, he ignores the fact that consumers are ignorant of the technical aspects of health care, and are very gullible in such matters. Serious injuries can result from taking the advice of well-meaning, untrained people. The high rate of complications from abortions carried out before abortion clinics were run by trained health workers is one example of such dangers. Further, a free market approach to health professionals would inevitably mean that the rich, the well educated, the energetic and the powerful would find and

pay the most competent healers, while the poor, the old, and the ignorant would put up with the most convenient, cheapest alternatives.

The Rise of Consumerism in Health Care

Since Ralph Nader won his single handed fight against General Motors in the United States in the 1960s, consumerism has become respectable in western societies. Ombudsmen have been appointed, and no government could now survive if it failed to pass a few consumer protection laws. The days of “caveat emptor”, or “buyer beware”, are well and truly gone-indeed, in many cases in the United States now the positions are reversed and it is the seller who has to step gingerly and protect himself.

This is not yet the case in health service legislation in Australia although there are some signs of a change, for which a brief description of the position in the US and Britain provides a perspective. The Nader organisation has sponsored several health consumer action lobbies in the United States, which have now joined to form the Consumer Coalition for Health, while the research aspects of health consumerism are catered for by the Public Citizen Health Research Group. Both these organisations are located in Washington DC and issue a joint Newsletter called CHAN-the Consumer Health Action Network. These groups commission reports on particular issues, give evidence to Senate Committees, and publicise abuses in the health system.

There has also been an enormous upsurge in litigation between patients, doctors and hospitals and not connected directly with Naderism. In earlier cases patients have sued for negligence and malpractice, and have sent insurance premiums for doctors skyrocketing. There are many reasons for this increase in litigation, which have been well summarised by Somers.[I] Studies have shown that few patients actually want to sue, and that doctors are not sued for making mistakes but because they refused to acknowledge their mistake and to discuss it with the patient, sending the bill instead with no reference to the incident and no indication of concern for the patient. Somers says that “an underlying cause of the vast increase in ma1 ractice claims and suits is the tension and coniict resulting from the effort to maintain an anachronistic nineteenth-century form of human relations in the mid-twentieth century”. The recognition of these problems has begun to affect leading members of the medical profession in the United States: medical journals carry articles on these topics and graduating doctors are alerted to the need to maintain a good relationship with their patients.

Associated with this movement is the development of the American Hospitals’ Association (AHA) Bill of Rights. This was

COMMUNITY HEALTH STUDIES 76 BATES

approved as a national olicy statement after a

The AHA said that, though hospitals would not lose accreditation if they failed to adopt the statement, they were strongly urged to endorse it and give copies to all patients.[9] A number of these “rights” deal with courtesy between staff and patient but most deal essentially with the matter of informed consent. The document is not meant as a legal document to be incorporated into statute law, but it has been suggested that even if it is not adopted as official hospital policy, it could be used in court as evidence against a hospital, on the grounds that it would gwe the jury an indication of acceptable hospital practice.[ 101

The United States Senate and Congress are now determined that consumers shall have .a voice in health planning. To enforce this, in December 1976 Congress passed the National Health Planmng and Resources Development Act (PL 93-641) which is a most important pjece of legislation from the consumer point of view. The Act set up throughout the United States a series of Health Systems Agencies (HSAs) to determine the pattern of health care delivery in each local area, to describe this pattern and to develop a 5 year plan. Since the HSAs are disbursing Federal funds they d o have considerable power to implement their plans. Consumers must form at least 51%, up to a maximum of WO, of members of the HSA’s governing body: hence, in theory at least, consumers now have considerable power in participation in health planning in the United States. Gradually consumer groups are whittling away and obtaining more power and information. An example is the recent instruction by the US Department of Health, Education and Welfare to all Professional Standards Review Organisations (PSROs.), the doctors’ committees which are monitoring professional medical standards of care. Until now, their data has not been available to consumer groups, but a recent amendment to the PSRO law (PL 95-142) states “PSROs are required to provide aggregate statistical data (without identifying any individual) on a geographic, institutional, or other basis reflecting the volume and frequency of services furnished”. Hence consumers will now be able to see the mortality and morbidity rates, the volumes of surgery done, etcetera, of different hospitals and will be able to judge hospitals accordingly.

In Britain there is a consumer parallel to the total health cover of the National Health Service. Communit Health Councils (CHCs) were set up as part o r the reorganisation of the National Health Service in 1973. 229 of these bodies have been set UP in England and Wales, each with about thirty members representing the community in which they live. The total cost of CHCs in 1976-77 was f3.67 million, or about AS6 million, which shows that consumer

three-year study, and reeased P in January 1973. participation is, indeed, taken seriously in Britain. Each CHC has an office and an Executive Secretary, and they have the function of representing the views of the community to those who run the health service. They also act as a channel of information from the health service to the consumers, creating some understanding for the problems of the service. CHC members have a right of access to information about the health service, they can go into all hospitals and health premises and talk to staff, and they must be shown, and comment on, any plans that the Regional Health Authorities submit to the Department of Health and Social Security. The thirty or so members generally divide into teams with special interests such as geriatric care, maternal and .child care, family planning, emergency services, etcetera. They investigate health services in accordance with these interests, and report on them to the various levels of management.

CHCs are an entirely new way of giving consumers a voice in the health service system. They are a structured, bureaucratically serviced organisation, which must be consulted by health service managers. No community can be fully represented by any one body, but the CHCs come closer to such an ideal than any other community body at present in existence. They provide a mini-bureaucratic structure as a counterfoil to the maxi-bureaucracy of the NHS. They have a preventive effect by their mere existence and because they must be consulted on planning issues. Hence managers tend to modify their proposals before they are even shown to the CHC for comment. The observation that the policeman on the beat is a preventor of crime is becoming evident in the analagous effects of the CHCs-and the fact that this effect is not measurable does not reduce its importance. Some evaluation of CHCs is developing as they

row; a National Association of CHCs was f ormed in November 1976; and a regular publication, “CHC News”, disseminates information to all CHCs.[lI] A Health Service Commissioner, or Health Ombudsman, is also a part of the British consumer scheme. He was appointed in 1974 and is responsible to Parliament. He investigates individual, non- clinical complaints and receives many from staff in institutions who fear victimisation. His usefulness is real but limited, since he does not deal with clinical cases or with claims that may be subject to court action.(l2]

Health Consumerism in Australia.

Medical Consumers Associations were founded in Victoria in 1974 and in New South Wales in 1976, though the Victorian Association has become saturated with health professionals and changed its name to Health Action in 1976. The NSW organisation functions somewhat

BATES 77 COMMUNITY HEALTH STUDIES

along the lines of a small CHC, with groups studying various aspects of health services. It has made submissions to such bodies as the NSW Government’s Review into Public Administra- tion and to the Privacy Commission and has acted as a helper to patients with complaints. One of the submissions has borne fruit and the Premier of NSW, acting through the Wilenski Review of Government Admnistration, has made available $26,000 from April 1978 and June 1979 to develop a Communit Health Council in the outer western area 01 Sydney, known as WHIP (Western Health Involvement Programme).[ 131

Since its formation, the Medical Consumers Association of NSW (MCA) has been overwhelmed with complaints from people who have had unhappy experiences with hospitals and with general practitioners. Many complaints referred to the impersonal treatment received in hospitals and the lack of information received from doctors.

Recently a small survey was completed among health consumers in a lower middle class area of Sydney.[ 141 Fifty people were interviewed about their experiences with health services over a number of years, as far back as they could remember. The commonest complaint involved lack of information and explanation about their condition. All res ondents complained that they had had dikculty in obtaining information and some had never felt that they were really told the truth. They felt that health providers generally lack respect for patients’ capacity to know and understand. It is clear from the complaints received by MCA that this communication gap applies at all levels in the system and to all aspects of health care. Peopk are not told what drugs they are taking, what the drugs are for, or what side effects they may expect-nor even told whether it is more dangerous to miss a dose or to take a double dose, if they are not sure whether they have taken the prescribed dose. This problem applies particularly to sufferers from chronic diseases like hypertension or diabetes, where medication becomes an automatic habit and it is hard to be always sure whether one has taken one’s tablets or not. Another survey was conducted by Dr. Roderic McEwin among 300 patients discharged from a Repatriation General Hospital. His findings were similar: 49% of patients complained that they were not given enough information about their illness. An additional 10% said that nurses did not explain beforehand what they were going to do, the same complaint being also made about doctors bv 9% of the < .- pati&ts.[15]

Manv beode comblain to MCA about the lack of &p&t ihown health service providers.

the hospital who refused One example is that to let a young mother take her premature baby home when his weight reached five pounds. This woman said “They didn’t take into account that I

had been a nurse’s aide in [a large public hospital in Adelaide] for two years, during which time 1 looked after premature babies and taught mothers how to care for them. The hospital said this experience was irrelevant.” When respect is shown, patients are inordinately grateful, becaus.e this occurs so rarely. “He is very good,” said one patient of her doctor, “He doesn’t treat you like an idiot. He sits down and talks to you and explains what is happening.”

There is, of course, another side to the story. Many doctors do explain matters to patients again and again, only to have the patients say that they have forgotten or not understood. There is considerable literature which describes the frustration experienced by practitioners who find their advice ignored. “What doctor has not been plagued over and over again for advice, only to have the same patient calmly ignore every suggestion made?” asks one writer, who goes on to ask whether patients really understand what the doctor is saying.[l6] One useful study of doctor-patient communications showed that, generally, the patient does not remember or understand the information the doctor does give, because most doctors do not know how to explain in a clear but simple fashion.[ 17l They give too many facts at once; they give a mini-lecture without giving the patient a chance to ask questions; they do not obtain from the patient any feedback on what he understands of the information given to him; they present information in the wrong order for the most effective memorising. So far, health personnel have not thought such matters to be as important as sheer technical competence but it is not much use giving highly competent technical advice which people then ignore. Women Patients and the Health Care System

Many of MCA‘s complainants were women, who spoke of the particular problems they experienced at the hands of the health services. Women use health services far more frequently than men do; indeed it is a rare woman who, by the age of about 30, has not had a large number of contacts with health service personnel. Menstruation, contraception, pregnancy and childbirth, make ”patients” out of most healthy young women. Perhaps we should stop at this point and ask why healthy women should be regarded as “patients” merely because they seek some health services? The actual name used does matter: constant repetition of the label “patient“ breeds expectations, in both parties, of patient and passive behaviour. If, instead, healthy women seeking services such as contraception were known as customers, clients or consumers a different atmosphere might begin to develop and, unless it does, it seems likely that more and more women will become alienated from the health services and seek alternative forms of care, as the groups have done who have formed the various Women’s Health Centres.

COMMUNITY HEALTH STUDIES 78 BATES

The movement away from traditional services may, of course, be very useful. It means, first, that the eople running traditional services receive clear Pcedback when their programmes are rejected. Second, it means that a number of women gain the educational experience of setting up and running health centres, and a very much larger number of women learn quite a lot about their own bodies. This process of education for the ordinary woman has wide repercussions in the community: the children, parents and spouses of these women also become educated. And, third, perhaps the traditional health services may change some of their programmes which have become unsuitable for the problems people bring to them-a most useful effect of consumer pressure.

Many complaints have been about hospitals’ and obstetricians’ attitudes to childbirth. The practice of induction, the refusal to allow the father to be present-or if he is allowed, his feeling that he is very unwelcome-and the removal of the baby to a nursery, have all come under fire, and associations such as Parent Centres and the Nursing Mothers’ Association have begun to fight against these practices.

After childbirth, most women continue to have contact with health services when, as mothers, they take their children to clinics, to immunisation, and for various other services. In most of these situations both mother and child are well, seeking only preventive care, and usually in these circumstances mothers are treated as if they were rational beings. The situation tends to be different when the child is ill. Then, all too often, the worried mother is regarded as a nuisance, neurotic and a hindrance to the health providers. These attitudes are gradually changing, but there is still a long way to go. It is not always possible for a parent to stay in hospital with a sick child and mothers are still kept in the dark about their child‘s condition by hospital staff.

When they are older, women begin another phase of their health contacts: that of coping with the menopause. At that sta e the woman is frequently labelled as neurotic, for she has little help in dealing with the menopause and continues to seek help from health professionals who feel they can do no more to help her except dish out tranquillisers. Beset on all sides-by menopause, by her children’s most objectionable years, by her husband’s alienation, possibly by divorce or widowhood-the non-working woman often finds herself with another problem: her own aged parents become frail and ill and she has to seek health services for them, often becoming an unpaid nurse. What women at this stage need is not mainly a doctor: no doctor can cure life’s ills. These women need social supports available on call: home helps for the aged parents; counselling t o cope with the relationships with the children; menopausal

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counselling, and help to enable them to redirect their own life towards new aims and satisfactions. Doctors can help women best, at this stage, by refusing to allow the women to believe that doctors can help them other than by short-run medication, and by referring on to other health and welfare services. This means that doctors will have to learn what and where these services are, explain them to the client and persuade her to change her attitudes sufficiently to try a source other than the medical system. Consumer associations such as MCA, also need to play their part in this process, to engage in a dialogue with their members and explain the need for self-education on health matters, the need for takin most of the responsibility for

sources of help outside the simple system of visiting the doctor for a renewal of a prescnption.

Finally, we come to old age, when the surviving women again seek health care far more frequently than do the men, who are mostly not alive to suffer the debilitating physical conditions and Psychological depressions of old age and loneliness. By this time women have become resigned to their fate and, as a result of a lifetime of passive acceptance of what the world gives, obediently do what they can remember of what doctor told them.

It is little wonder that doctors, who are still mostly men, tend to see women as somewhat neurotic, because so many women do use the health services, while the men are rather thin on the ground: From the consumer viewpoint, it is p robab ly necessary t o remind hea l th professionals at frequent intervals, that most women using health services are healthy and are using the much-advocated preventive services, and they should be treated as if they had some capacity for rational thought. And even when women are old and ill, it is insulting, and unnecessary, to regard them as having forfeited the right to know about their illness. Too many people-men and women-in our society expect doctors to perform miraculous cures: more explanation during the healthy times of a woman’s visits to doctors might reduce some of the excessive hopes that cause problems for consumers and doctors, when a real illness occurs. Hopefully, consumer organisations such as MCA, and provider organisations such as Doctors’ Reform Society, can work together for a change in this situation.*

one’s own h a l t E , and look forward to alternative

Further information about patients rights and nsponsi- bilities, which formed an appendix to an earlier draft of this paper, is available from Medical Consumers’ Association, Mansion House, 180 Elizabeth Stnet, Sydney.-Ed.

COMMUNITY HEALTH STUDIES

References

Senior Lecturer, School of Health Adminis- tration, University of New South Wales.

1. Australian Government Commission of Inquiry into Poverty (Third Main Report): Social/ Medical Aspects of Poverty in Australia (AGPS Canberra 1975), p. 6.

2. R. Carlson: The End of Medicine (Wiley NY 1979, p. 37. (Emphasis added).

3. L. Thomas: “On the Science of Technology of Medicine” in Daedalus 106:2 (1977). Although this quotation refers to the United States, a casual search throughout popular newspapers and maeazines in Australia for articles on disease will indicate the existence of a similar obsession in this country.

4. I. Illich: Medical Nemesis (Calder and Boyars London 1975), and his On the Limits of Medicine (Penguin Harmondsworth 1977).

5 . Illich: Limits of Medicine. 6. V. Navarro: “The Industrialisation of

Fetishism or the Fetishism of Industrialisa- tion” in SOC. Sci. and Med. 9 (1975) pp. 357- 363.

7. See, for example, M. Diesendorf (ed.): The Magic Bidlet, (Society for Social Responsibility in Science Canberra 1976); Office of Health Economics: Medicine and Society (London 1972); and R. Chesher

COMMUNITY HEALTH STUDIES 80

and R. Winkler: “Pharmacological Progress and Problems in Health Care” in Search 6:lO (1974) pp. 460-468.

8. H. M. Somers: “The Malpractice Con- troversy” in M.M.F.Q. 55:2 (Spring 1977).

9. B. J. Annas: The Rights of Hospital Patients (Discuss Books New York 1975).

10. jbid, p. 29. 1 1 . J. Hallas: CHCs in Action (Nuffield Pro-

vincial HosDitals Trust London 1976): and R. Klein and J. Lewis: The Politics of Consumer Representation (Centre for Studies in Social Policy London 1976).

12. See First Report of Health Service Commis- sioner, 1976-77 (HMSO London 1977).

13. Review of New South Wales Government Administration: Directions for Change, Interim Report (Government Printer Sydney November 1977) pp. 309-310.

14. E. Bates: “Consumer Participation in the Health Services” in Inr. J. Health Services XIX: 1 (1976).

15. ReDorted bv Shaun McIlwraith in Svdnev - , Mdrning Hirald. 31 August 1973.

16. G. E. Collins: “Do We Really Advise the Patient” in Journal Florida Medical Associa- tion (August 1955).

17. P. Ley and M. S. Spelman: Communicating with the Patient (Staples Press London 1967).

BATES