MEDICAL AND SOCIAL PROBLEMS OF POPULATION HEALTH AND METHODOLOGY OF ITS STUDY

MEDICAL AND SOCIAL PROBLEMS OF POPULATION HEALTH AND METHODOLOGY OF ITS STUDY. STRATEGIES OF HEALTH PROTECTION

What is Health?

Health is something of an enigma. Like the proverbial elephant, it is difficult to define but easy to spot when we see it. ‘You look well’ stands as a common greeting to a friend or a relative who appears relaxed, happy and buoyant – ‘feeling good’. Any reflection on the term, however, immediately reveals its complexity. The idea of health is capable of wide and narrow application, and can be negatively as well as positively defined. We can be in good health and poor health. Moreover, health is not just a feature of our daily life, it also appears frequently on the political landscape. Health scares such as BSE/CJD, SARS and even the prospect of bio-terrorism have all exercised politicians and their medical advisers in recent times, and have all provided a steady stream of media stories. Health risks seem to proliferate, even if, for most of us most of the time, these are less than urgent concerns.

In all such instances, and in our more mundane experience, health is also related to other complex ideas such as illness and disease. This constellation of terms: health, disease and illness, and the experiences and forms of knowledge to which they relate, are the subjects of this opening chapter. In order to structure the discussion, the chapter is organized round four themes:

• The medical model of health and illness

• Lay concepts of health

• Health as attribute and health as relation

• Health and illness – physical and mental

These themes comprise substantive topics in their own right, but the discussion of them will also act as a lead into the subsequent chapters of the book. Many of the wider dimensions of health and illness – including their cultural and political features – will figure throughout the book. Examples of the most recent controversies in health are dealt with particularly in the latter stages. In this opening chapter, however, we need to begin with the basics and establish a conceptual map of the field.

The Medical Model of Health and Illness

On the surface it may seem somewhat perverse to begin a book on the sociology of health and illness by considering the medical model. However, given the importance, not to say dominance of medical science and medical practice in modern times, understanding the medical approach to health is a necessary starting point. Much of what contemporary populations think about health and illness, and much of the focus of research – including sociological research – is strongly influenced by the prevailing medical model. In public debate, the medical approach remains central. It is therefore with this topic that we begin.

In order to illustrate what is meant here, let us take an example: the case of tuberculosis, an infectious disease responsible for a quarter of all deaths in the second half of the nineteenth century and the most important threat to health at that time (Webster 1994). In the medical model of disease, tuberculosis is defined as a disease of bodily organs (usually the lungs, but sometimes other sites such as the spine) following exposure to the tubercle bacillus. This exposure leads to pathological changes in the body’s systems, and can be observed at x-ray as damage to the surface of the lungs, in the case of respiratory tuberculosis. The bacillus can be identified through culturing blood or sputum. The development of the illness involves symptoms such as coughing, haemoptysis (coughing up blood), weight loss and fever. In this model the underlying cause of the illness is the bacillus, and its elimination from the body (through anti-tubercular drugs) is aimed to restore the body to health. In 1944, streptomycin was found to be active against the tubercle bacillus.

The main point of this model of disease is that it attempts to uncover underlying pathological processes and their particular effects. The problem with earlier, symptom-oriented approaches to health was that no such sequences of events could be established, and treatment could only be symptomatic. In the case of tuberculosis, the symptoms described above are also found in other diseases, and this problem of linking symptoms to specific underlying mechanisms frustrated medical development. Fever, for example, is common to many infectious disorders. Once the specific aetiology approach was accepted, such symptomatic approaches were relegated to the margins of medicine. Although observation and the treatment of symptoms were established practices in early modern medicine, and have remained important to physicians ever since, it was often difficult to distinguish such approaches from a wide variety of unorthodox practices. Today, these are often referred to as forms of ‘complementary medicine’ – herbalism and homeopathy, for example – that treat symptoms ‘holistically’ – but do not rest on the idea of underlying, specific pathological disease mechanisms.

The medical historian Christopher Lawrence has argued that by 1920 in Britain, and in other developed countries such as the USA, the medical model, as outlined briefly above, had come to dominate medical thought and practice and, increasingly, society’s attitude to health as a whole (Lawrence 1995). The medical model was essentially individualistic in orientation and, unlike earlier approaches, paid less attention to the patient’s social situation or the wider environment. This narrowing of focus (towards the internal workings of the body, and then to cellular and sub-cellular levels), led to many gains in understanding and treatment, especially after 1941, when penicillin was introduced, and the era of antibiotics began. But it was also accompanied by the development of what Lawrence calls a ‘bounded’ medical profession, that could pronounce widely on health matters and could act with increasing power and autonomy. Doctors now claimed exclusive jurisdiction over health and illness, with the warrant of the medical model of disease as their support.

The medical model, today, therefore, is as likely to emphasize the complex or unknown aetiology of a disease as it is to discover its specific ‘cause’. Many diseases can properly be recognized only by referring to a set of criteria (often arrived at by international groups of doctors) rather than identifying one underlying factor; diagnosis is often probabilistic rather than definitive. Treatment, in turn, may often be ‘palliative’, that is, trying to reduce the impact of symptoms, or contain the disease, rather than hoping to cure it completely. In addition, many doctors today work within multidisciplinary teams, rather than as isolated practitioners. They recognize (as the more thoughtful doctor has always done) the wider influences on health and the impact of disease on patients’ lives. Indeed, the rhetoric currently surrounding ‘patient partnership’ and ‘shared decision making’, to be found in many developed health care systems, need not be treated entirely cynically. Many health care professionals are attempting to reshape health care to meet the new needs and demands of their patients. These changes need to be borne in mind as we look at the issues of medical power and the continuing influence of medical science later in this book.

Second, the individualistic approach to disease is not the only approach to health to be found in a more broadly defined medical model, though it may be the dominant one. Most developed societies have also had a long tradition of public health, focusing not on the individual but on the health of populations. Here, the diagnosis and treatment of individuals is less important than measures of health for whole groups and societies, however much these rely on medical scientific explanations of disease and illness. The most important of such measures are rates of mortality, morbidity and disability, data on which are collected and studied by the scientific arm of public health, epidemiology. Their regularity among and between groups of people is the focus of enquiry. As one leading UK epidemiologist has put it, epidemiology may be contrasted with the clinical observation of patients or the controlled experiment in the laboratory [as] the study of the health and disease of populations and groups in relation to their environment and ways of living . . . and is being applied to a variety of health services as well as health. (Morris 1975: 3)

Public health research, especially during the period dominated by the infections, was preoccupied with mortality data, especially the how, when and why of early death. For example, one of the most important measures of population health is the infant mortality rate (IMR), which calculates the number of deaths in the first year of life per thousand live births. Today the IMR for the UK is 5.5 and for the USA, is 6.8. However, the IMR for India is 63, and for Mali in West Africa, 121. Such statistics have been, and still are, an indication of the different life circumstances and health of the populations in these countries, in that high infant deaths are associated with poor maternal health and poor social circumstances. However, in Western countries, mortality statistics have become less sensitive indicators of population health as social conditions have improved (for mothers and other groups) and as the rates at all ages have continued to fall. None the less, as we shall see in chapter 2, much epidemiological research, and medical sociology work related to it, still rely on mortality data.

Lay Concepts of Health

If the above account of the growing dominance of the medical model is reasonably accurate, it might be expected that lay concepts of health in modern societies would be strongly influenced by it in modern times. Explanations for events such as illness are rarely couched, for example, in religious terms, at least not by the majority of lay people in countries such as the UK and the USA, though such ideas may be prevalent in particular communities. Medical information is disseminated and available iumerous ways today, especially through television, the Internet and other media. If the development of an individualistic medical model has shaped lay understanding and experience of health, then modern cultures have been equally conducive to its widespread acceptance. It would be surprising, under these circumstances, to find an entirely separate system of ‘folk beliefs’ about illness, shaped by a non-medical culture.

At the same time, enough has already been said to indicate that health, illness and medicine refer to a wide range of events and experiences, and ideas about these are bound to contain tensions and contradictions, as well as ambivalence about the role of medical treatments in dealing with them (Williams and Calnan 1996: 17). Sociological research on lay concepts of health has provided important insights into the complexity and sophistication of views about such matters. Whilst this work has shown the widespread absorption of medical messages about health, it has also shown how this is translated and reconciled with other areas of life, and assessed against alternative sources of information. Modern ideas about health and illness can also draw on earlier notions, such as the need for ‘balance’ in sustaining well-being.

In the first place it needs to be recognized that health may be an overriding concern to health care professionals and researchers, including medical sociologists, but not for lay people in everyday life. Health, for many, and for most of the time, is part of the ‘natural attitude’ to life, in which taken-for-granted meanings are an essential background and are unconsidered for much of the time. In his study of risk behaviour and HIV, Bloor (1995: 26), for example, drawing on the writings of Alfred Schutz, distinguished between ‘the world of routine activities’ and ‘a world of considered alternatives and calculative action’ in interpreting how health risks were perceived by his respondents. Bloor’s study reinforces the view that daily life presupposes health, unless it is threatened by events or information that draw the layperson into considering alternatives. Health risks vie with the routine nature of daily life, with its own pressures and pleasures, constraints and potentialities. As we shall see below, only a minority of people are forced, or choose, to abandon an assumption of health as a given. Those concerned with health promotion (as opposed to the treatment of illness) who wish to encourage lay people to become more health-conscious have to face this issue in doing so. Health is not necessarily a pressing and overriding value, consciously considered on a daily basis. Information on health risks is actively interpreted within specific social contexts (Alaszweski and Horlick-Jones 2003).

In addition to this, lay thinking about the causes or origins of good and ill health has been found to be characterized by complex considerations. Even if health is often taken for granted, and only missed when it is felt to be compromised, this does not mean that lay people lack clear ideas about the relationship between health and illness. In one of the earliest and most influential studies of lay concepts of health, Herzlich (1973) showed how, among a sample of 80 middle-class French respondents (mostly from Paris) health was linked to the connections between individuals and ‘the way of life’. Health beliefs, or the ‘representations of health’ as Herzlich called them, located the source of illness in the character of urban living, with its tendency to create stress, fatigue and nervous tension. This, it was felt, could ‘facilitate’ or ‘release’ forces that could aid the development of illness. But such forces could also ‘generate’ illness – that is, be more pathological in their own right – and not just exacerbate existing problems, for example, by making an infection worse.

Positive health, on the other hand, was seen to be inherent in the individual. The balance or ‘equilibrium’ between the healthy individual and illness could be upset by a number of features of the environment. Cancer was linked to allergies, and to the nervous strain of city life and the polluted atmosphere found there. Mental illness was linked to the ‘restlessness’ of modern living, and heart disease to the ‘many worries which make people live in a certain state of anxiety’ (Herzlich 1973: 22). Whilst the respondents in this study recognized that individual attributes might contribute to poor health, these attributes were never seen as both necessary and sufficient. The individual’s ‘nature’, heredity, temperament or predisposition might make the individual vulnerable, but the ‘way of life’ remained crucial to the development of poor health.

One of the main strengths of Blaxter’s study is that it shows the importance of gender and age to such definitions of health. Blaxter argues that health in much lay thinking can be seen to constitute a form of ‘reserve stock’, to be invested in by adopting healthy behaviours, or diminished by self-neglect or unhealthy behaviours (Blaxter 1990: 16). The ‘health capital’ we are born with can be seen as a function of heredity and as being shaped by development in the early years of life. But people in later life may feel that their ‘stock’ is diminishing or running down. Problems with mobility, eyesight and hearing are obvious examples. In Blaxter’s study older people did, indeed, report more negative views of their health, with men under the age of 40 more likely to emphasize a positive notion of ‘fitness’. Health as functioning – being able to carry out self-care and other routine tasks – is likely to increase in importance with age, and likewise is largely taken for granted among the young. For young women, however, Blaxter’s study underlined the importance of social relationships, as well as being patient with children and ‘coping with the family’ (Blaxter 1990: 27).

In Blaxter’s study, then, the nuanced and multidimensional character of lay health beliefs is underlined. This is of particular note, especially in a period when health risks appear to be multiplying. For example, fears have been expressed that the ‘new genetics’ will overwhelm modern populations with burdensome information about potential health risks and the need to make choices about an ever wider range of medical and health-promoting interventions (including screening programmes). The incorporation of an increasing number of human and social problems into the medical and genetic orbit has led sociologists to analyse the various forces, concerns and dilemmas involved (Conrad 2000). Even, here, though, empirical research has found that lay people are able to absorb or deal with even the most technical and complex information in creative and practical ways. A brief example to conclude this section of the chapter can serve to illustrate the point.

As part of an ongoing programme of research at Cardiff University, Parsons and Atkinson (1992) reported on the knowledge and beliefs of 22 mothers and 32 daughters who had a known risk of carrying the gene responsible for Duchenne muscular dystrophy, a disease that leads, slowly, to a progressive degeneration of muscular tissue. It is inherited through a recessive, sex-linked gene, so that only boys are affected, and only women can pass it on. There is no effective treatment for the disease, and the outlook for many affected individuals, in the medium term, is poor. It might be expected that under these circumstances reproductive decisions on the part of the women in the study would be likely to be highly problematic. Each woman in the study had gone through several assessments and tests, resulting, finally, in two sets of risk figures, one for her carrier status and one for her risk of passing on the gene to any offspring. In fact, Parsons and Atkinson found considerable confusion on the part of some women as to the nature of the statistics they had been given. However, the point of the study was not to demonstrate the women’s ability to account for their carrier status, or otherwise, but to explore how the knowledge they did have was incorporated into daily life. Parsons and Atkinson found that the women had invariably translated statistical risk into ‘descriptive categories that had become routine recipes for their reproductive behaviour’, so that specific figures could be seen, for example, as putting them at high or low risk of transmission (Parsons and Atkinson 1992: 441). Far from being disempowered by expert knowledge, the women were able to use these descriptive statements to inform action, in ways that the medical information could not. Probabilistic knowledge derived from genetics was turned into more certain guidelines that could deal with both decision making and social relationships. For much of the time the women were able to relegate their carrier status to a ‘low zone of relevance’. In this study health beliefs were showot only as sophisticated but also as practical, being fashioned and refashioned as contexts and experiences changed. As we saw earlier, health beliefs are integrated, where possible, into the routine actions that constitute everyday life.

This is not to say that all lay health beliefs are true or unproblematic. While medical sociology has made an important contribution to understanding the rationality, relevance and socially contextualized nature of lay health beliefs, it is important not to overstate the argument. Whilst individuals have unique insights into their own situations, these cannot be substituted for expert knowledge in all and every circumstance (Prior 2003). The economist Amartya Sen (2002) has shown, for example, that when a comparative perspective of lay views is adopted, anomalies quickly appear. Quoting data from India and the USA, he shows that the higher the level of education in a population, the higher the level of reported illness. This stands in contrast to more ‘objective’ measures, such as mortality rates and life expectancy, which, as indicated earlier in this chapter, are much more favourable in the USA than in a country such as India. We should not conclude from their stated beliefs or behaviours that people in the USA are less healthy than people in India. Rather, we should see lay beliefs and behaviour, as well as the medical model, as components of a dialectic, interacting in complex ways, and mediated by different cultural settings.

Health as Attribute and Health as Relation

The previous two sections have explored, in outline, the medical model and lay beliefs about health. One of the ways we can think sociologically about the tension between the two is to consider health in terms of attribute and relation. The relationship between these two approaches also provides us with a framework with which to approach some of the most puzzling features of contemporary health phenomena.

At this point, it may be thought that an attributional view of health is largely the province of medicine and the medical model of health, and a relational view that of lay people or, indeed, of the sociologist. In many situations this may well be the case, but again the idea of dialectic is important. Take the case of a disease such as osteoarthritis, a common disorder of later life, involving progressive deterioration in the joints of the body, especially the hips. As the disease is associated with age, many people tend to discount the aches and pains which accompany it as features of growing older, and treat them as more or less normal. Or, at least, it has been found that people attempt to do so (Sanders et al. 2002). Thus, reporting of such symptoms to the doctor is likely to be highly variable. At the same time, the fit between symptoms and degree of disease progression is often difficult for doctors to judge. Patients with low levels of pain may have badly affected joints, and those in considerable pain may not show signs of major physical changes (for example, at x-ray). How the severity of the disease is judged, and whether or when to intervene (for example, by surgical replacement of a hip), is, in part at least, a matter for negotiation. It may be contingent on a host of factors, not least the presence of a waiting list for surgery.

In this respect the medical view of disease cannot easily operate within an entirely attributional perspective. Returning to our earlier point, and as Healy (1999: 12) has pointed out, the ‘specific disease model’ of the late nineteenth century overcame earlier confusions created by a form of medicine which relied on a combination of theory and observation. Healy cites the case of diphtheria in this period, which was often confused with other throat problems, and only resolved when a specific diphtheria organism was isolated. To repeat, the new medical model emphasized that specific causes gave rise to specific diseases. Whilst this may still hold true for some diseases today, the rise in importance of degenerative conditions requires that medical knowledge and medical practice often adopt a ‘multi-factorial’ model of illness, wherein physical, psychological and social processes are recognized as playing an important part. Even where genetic knowledge is giving renewed impetus to the specific cause approach, it is recognized that genes may express themselves in different ways in different individuals and within different environments.

By the same token, a relational view of health is not always characteristic of lay views. An attributional view of disease has, in recent years, become highly attractive among some lay people, especially in connection with problematic and contentious disorders. The ‘way of life’ may not always be the main emphasis in lay thinking about disease causation. Conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), and Gulf War Syndrome are among the best publicized in this regard. ME/CFS is held by many sufferers to be the result of a viral illness, and not, as many doctors think, the outcome of psychological problems including depression. The paradox lies in the fact that it is patients, and not doctors, who are claiming that the illness results from an underlying biological attribute, and it is doctors who are warning against the ‘medicalization’ of ‘non-diseases’, fuelled by genetics on the one hand and an expansionist pharmaceutical industry on the other (Moynihan and Smith 2002). Claims made about the ‘objective’ or ‘real’ nature or causes of a disorder do not themselves, of course, mean that they are true.

Up to this point the discussion has been largely concerned with physical health and physical illness or disability. Indeed, much of this short book will necessarily be confined to physical health and illness. None the less, this introductory discussion cannot properly conclude without considering, if only briefly, the difficult issues presented by mental health.

One of the difficulties in explaining mental disorder is that much of it is hidden. At any one time the number of people being treated is only WHAT IS HEALTH? 17 a fraction of those living with undiagnosed illness in the community. If the study of mental illness concentrates on those already in contact with the services, little can be said about its origins, unless a clear account can be given of the selection process that has led some to receive treatment and some not. Moreover, social conditions may change between the onset of a disorder and making contact with services, acting as a further confounding factor. Although the US studies, mentioned above, tried to estimate this effect, large-scale epidemiological studies in the community are difficult and expensive to mount (and run the risk of creating large estimates of illness which fuel the ‘medicalization’ of whole communities, and provide new markets for the pharmaceutical companies). In Britain, one of the best-known studies of mental disorder in the community (in this case, depression) attempted to control for the possible confounding factors involved by making rigorous assessments of the circumstances surrounding the onset of illness among community-based samples (Brown and Harris 1978). This study challenged prevailing definitions of depression by showing that severe life events involving loss and threat had a major impact on the onset and development of depression, in the presence of vulnerability factors such as early loss of a mother, low socio-economic status and the lack of a confiding relationship. Subsequent work in this tradition has shown that neglect and abuse in childhood also have a significant influence on the occurrence of adult depression, indicating that genetic influences are unlikely to be a major determining factor in this disorder (Bifulco and Moran 1998).

As far as the ‘social production’ or shaping of mental health is concerned, a number of important studies, especially in the USA during the 1960s and 1970s, employed a deviancy perspective to try to explain the medicalization of disturbing and distressing behaviours in terms of illness. Perhaps the best-known study of this period is Scheff’s Being Mentally Ill (1999 [1967]). Scheff’s argument, essentially, revolved round two key concepts. The first of these is ‘residual deviance’, which, he argued, helps explain the wide variety of disorders and conditions which are held to make up mental illness. ‘Residual deviance’ is essentially behaviour which is found to be unacceptable, but which is not categorized in other ways, such as being regarded as criminal. This approach to mental illness draws heavily on labelling theory, in that the behaviour designated as mental illness is that which attracts the label. Behaviour so labelled in one time or place might not be so labelled in another time or place. Goffman (1963a) famously pointed to the example of praying. Being on one’s knees in a praying posture is acceptable in a designated religious building, but not on the street outside. The contexts and contingencies surrounding particular problems help explain their labelling, or otherwise. Homosexuality, once regarded as a mental disorder by psychiatry, is not regarded as such now, having been voted out of psychiatric classifications by American and British psychiatrists in the 1970s. In such ways mental illness can be produced, or not, depending on social contingencies.

Second, Scheff argued that ‘societal reaction’ to residual deviance helps explain the career of mental health patients. Once labelled, the individual is likely to take on the characteristics of the label, thus confirming the original social response. Like Goffman (1963b), Scheff saw that identity could be powerfully influenced, and indeed spoiled, by one characteristic of the individual being generalized to their whole self. The stigma of mental illness, as a diagnosis, could have real effects, independently of any underlying disorder. Institutional ‘warehousing’ of psychiatric patients in large mental hospitals, which had come to dominate the pattern of care during the twentieth century, seems to have served only to reinforce this process. Though critics such as Gove (1974) argued that negative societal reaction was the last, rather than the first, resort of families and communities to disturbing behaviour, Scheff’s work, along with other ‘anti-psychiatry’ arguments at the time, provided a powerful challenge to social and professional attitudes towards mental illness.

In recent years, the writings of Foucault (1967, 1973) have been used to supplement and reinforce a critical view of psychiatry, medicine and social control, in ‘producing’ mental illness. For Foucault, the control of mental illness was expressed by the ‘great confinement’ in eighteenthand nineteenth-century France, leading to the repression of ‘unreason’ and the policing of troublesome and threatening behaviour. Here the state and the medical profession were seen as treating mentally ill people as excluded from the world of reason, and consigning large numbers of them to the degrading conditions of mental hospitals. However, as Porter (2002b) has argued, such a picture is simplistic and over-generalized, especially when applied to other countries such as the USA and UK, where hospitalization of the mentally ill was on a relatively small scale until the end of the nineteenth century. Porter also shows that a number of vested interests (and safeguards) were at work in shaping responses to mental illness, though he also sees that by the Second World War many large hospitals had ‘degenerated into sites dominated by formal drills, financial stringency, and drug routines’ (p. 120), with some 150,000 inmates being in such institutions in Britain in 1950. Their numbers had dropped to some 30,000 by the 1980s (p. 211).

It is somewhat paradoxical, perhaps, that attempts to ‘de-institutionalize’ the mentally ill in the last 20 years have gone hand in hand with a renewed emphasis on the biology and genetics of mental health, as much as on its ‘relational’ character. One way in which this paradox is explicable is, of course, to be found in the widespread use of anti-psychotic, anti-depressive and anxiolytic drugs. Though based on chemical and neurological theories of mental illness, they have effectively ‘dampened down’ symptoms and made patients relatively more manageable in the community. The pharmacological revolution in psychiatry has been married with policies to develop widespread forms of ‘community care’. Whether this counts as a more effective way of treating the mentally ill and helps to reduce its ‘production’ or has led to a more tolerant view of mental health problems is a matter of judgement rather than hard evidence. The ability of people in different social contexts to tolerate and respond positively to a range of illness states is clearly contingent on many factors, including the degree of disruption of social interaction they involve and the level of tolerance of families, workmates and wider communities. Nevertheless, mental health continues to present particular difficulties, especially when people ‘translate disgust into the disgusting and fears into the fearful’ (Porter 2002b: 62). The distinctions between social responses to mental illness and physical illness raised here remain powerful ones and need to be borne in mind in discussions about health.

Concluding Remark

Health can be seen as a multifaceted dimension of human life, and as a ‘reserve stock’ (Blaxter 2003, 2004) of vitality, fitness and strength (whether psychological or physical or both) which individuals can draw upon to pursue their goals and actions. From a sociological viewpoint health can be seen as both ‘attribute’ and ‘relation’, simultaneously involving biological and social factors. This suggests a dynamic view of health and illness, changing across biographical and historical time. The experience of health, both good and poor, is likely to be influenced by the circumstances into which people are born and the contexts and actions which prevail at different stages of life. Health and illness thus take us to a crucial intersection of biography and history. The social patterning of health which results from this intersection is the focus of the next chapter.