Health and Disease: II. Sociological Perspectives

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II. SOCIOLOGICAL PERSPECTIVES

The sociology of health and disease has two distinct traditions, each with somewhat different implications for the field of bioethics. The first tradition is socioepidemiologic in nature, which is to say it focuses on understanding how the distribution of death and illness is influenced by such factors as age, gender, race, and social class. The second tradition is oriented to the doctor-patient relationship and is concerned with the meanings of illness for patients and practitioners, and with how these meanings reflect the nature of power and authority in society.

The Social Epidemiology of Illness

ORIGINS. Sociological perspectives on health and disease can be traced to the French sociologist Emile Durkheim's classic treatise, Suicide (1951). In this work, Durkheim examined the impact on the suicide rate of such variables as residence (urban or rural), marital status, and religious affiliation. Durkheim's basic assumption was that if suicide were purely an individual phenomenon, these variables would have no impact on group rates. Using public health statistics, Durkheim determined that the suicide rate was higher among urban dwellers than among those who lived in rural areas, that the rate of the unmarried exceeded that of the married, and that of Protestants exceeded that of Catholics. He theorized that social ties linking individuals to society inhibit suicidal impulses, while the absence of such ties does not. Much subsequent socioepidemiology of illness echoes Durkheim's findings that those with a greater stake in society fare better than those with a lesser stake.

Since Durkheim published this work, sociologists have dedicated themselves to showing that who becomes ill is not just a matter of individual constitutions, but is heavily influenced by the standard variables of sociological explanation; namely gender, race, and class. While the proposition that one's social position predicts one's health status is generally accepted, attention is also now being paid to the pathways that explain this phenomenon. Bruce Link and Jo Phelan, for example, argue that individually based risk factors need to be contextualized in order to consider what puts people at risk, and that social factors, such as socioeconomic status, are fundamental causes of disease because their association with disease remains constant even when intervening factors change.

GENDER. Despite their greater life expectancies, women report more morbidity and utilize health services more frequently than do men (Verbrugge). Explanations advanced for the higher rates of illness among women include less satisfying social and economic roles; greater stress; more cultural permission for reporting discomfort; and biological differences.

CLASS. The relationship between class and mortality and morbidity is well documented. At all age levels in the United States, there is an inverse relationship between morbidity and social class (Syme and Berkman). This means that as class standing increases, the prevalence of illness decreases, and vice versa. Similar relationships have been demonstrated for other countries in the industrialized West. There is also evidence that the association between socioeconomic status (SES) and health exists at all levels of the SES hierarchy (Adler, et al.). It has been argued that socioeconomic status is a key factor in the creation of disparities in health, and that the reduction of health disparities will rely on addressing the components of SES, particularly income, education, and occupation (Adler and Newman).

Although the link between social class and the prevalence of illness is not disputed, the reasons for it are. A number of explanations have been advanced to account for this relationship, including lack of access to healthcare resources; lifestyle (there is an inverse relationship between obesity, as well as tobacco and alcohol consumption, and social class); and increased exposure to economic and social stress. Work has been indicted as a causal factor in the relationship between social class and heart disease (Siegrist, et al.; Marmot and Theorell). Lower-class jobs provide less autonomy, more constraint, and less opportunity for expression than middle-class occupations. In addition, the causal direction of the link between class and illness has been questioned, with some analysts suggesting that since the less well are unable to compete in the economic system, they have their class standing lowered as a result. This is known as the downward drift hypothesis. There is some evidence to suggest that inequality itself, independent of income, is detrimental to health, and not only to those who have fewer resources but also to those with higher SES (Kawachi and Kennedy).

RACE. Race is another variable that affects mortality and morbidity. Vincente Navarro argues that once class is taken into account, differentials between whites and blacks disappear. This may be so, but at a pragmatic level there is a very real association of health status with urban poverty and race. This association accounts for morbidity and mortality associated with violence, infant mortality, and HIV infection associated with intravenous drug use and prostitution. The problems of the urban poor in gaining access to healthcare services have also been well documented. Compliance with treatment regimens is also an issue for inner-city populations, with the most common explanation being the cultural distance between providers and patients.

STRESS AND DISADVANTAGE. Stress has been used as a variable to explain relationships among gender, social class, race, and illness. While the "fundamental cause" concept (Link and Phelan) attempts to expand the causal pathways studied between SES and health, the "stress theory" specifies one particular aspect of the relationship between social position and health. Persons of lower SES experience more stressful environments, such as economic strain and insecure employment (Brunner), and these stressors influence susceptibility to disease by impacting (among other things) the nervous and immune systems. Stress seems to better account for variations in rates of mental, rather than physical, illness (Lin and Ensel). Despite the widespread agreement on how to measure it, there is confusion about what stress is. There is also widespread agreement that social supports and networks buffer stress, but there is some confusion about how (Kessler, et al.). Moreover, stress does not have an equal impact on men and women. Marriage, for example, buffers stress better for men than for women.

ELIMINATING HEALTH DISPARITIES. Having demonstrated that health disparities often follow the contours of social disadvantage, a great deal of work has been focused on how to specify the causal pathways of this disadvantage, with the goal of eliminating disparities in health. This has led to disagreement about what the causal pathways to health differentials are, and about the ways in which efforts to reduce disparities can reach the intended beneficiaries without widening the very gap they are intended to close. Medical innovations and public-policy interventions to reduce disparities are often introduced and carried out in a context of inequality (Mechanic), and it has been argued that targeting facets of socioeconomic status, such as a living wage, may go furthest in reducing health disparities (Link and Phelan; Adler and Newman).

Social Epidemiology and Bioethics

The social epidemiology of illness demonstrates that sickness does not fall equally upon rich and poor, men and women, or upon black and white. Distributional inequities are more than simple political and economic problems—they have an ethical dimension as well.

Bioethicists need to pay greater attention to issues of justice and equity at a political level; that is, to the ethical dimensions of political decisions. As the allocation of scarce resources becomes a public issue of greater salience, the underserved will need advocates. The championing of individual patient rights that marked bedside bioethics in its formative years needs to be extended to the class of uninsured and underinsured patients as healthcare grows in importance on the national political agenda.

As its scope of inquiry expands, bioethics may have the opportunity to play a greater role in policy making. However, there is a danger here as well. So long as bioethics is focused on the bedside, both the subject matter and the texts appropriate to it are limited. Once the links between class, race, gender, and illness are illuminated, the boundaries of bioethics become murky. The doctor-patient relationship may be fraught with moral complexity, but it is a rather neatly defined, bounded whole. This is not so for the entire distributive system of society.

The Social Construction of Illness

The second tradition in the sociology of illness is less concerned with the distribution of illness by race, class, and gender, and more concerned with the social meanings attached to illness. It is more concerned with the roles of provider and patient, and with what these roles say about the distribution of power and authority in society. The social epidemiological tradition is involved in the analysis of large data sets (such as national samples) to determine statistical correlations between health status and social traits such as gender, class, and race. The social-constructionist approach is more likely to involve firsthand observation of behavior in a limited number of settings. These observations of behavior provide a basis for drawing conclusions about the nature of healthcare more generally. Favored themes in the social-constructionist approach include the management of uncertainty, the difficulties of lay-professional communication, and the use and misuse of professional authority.

THE SICK ROLE. Sociological speculation about the nature of the doctor-patient relationship begins with Talcott Parsons's discussion of the "sick role" (1951). Although Parsons's unique insight is so commonplace today that we do not appreciate its originality, he was among the first to focus on the doctor-patient dyad as a role relationship with a set of reciprocal rights, duties, and obligations.

Parsons begins with a discussion of the basic social situation in which patients and physicians find themselves. Patients are: (1) not to blame for their condition, (2) powerless, and (3) technically incompetent. Physicians' existential position is one beset with uncertainty about what ails the patient and how best to treat it. In addition, they are unable to cure many of the ills of patients, and there are difficulties with access to both patients' bodies and the intimate details of their lives.

Each role consists of four interlocking imperatives that grow out of the social assumptions made about each actor. The sick patient is granted a temporary exemption from normal social responsibilities. In exchange for this exemption, the patient must seek technically competent help, must be motivated to get well, and must comply with treatment regimens. The passivity of the patient stems from what has been called the "power asymmetry," which Parsons says characterizes the relation of doctor and patient. The only positive action Parsons ascribes to the patient is to seek help. By making this a role obligation, Parsons ignores the complexities of help-seeking behaviors. Such complexities include the recognition of a condition as illness, of the cultural and economic barriers to access, and of the nature of lay networks. In addition, with his stricture on technically competent help, Parsons invalidates any and all alternatives to allopathic medicine.

Physicians, according to Parsons, occupy roles whose demands are dictated by their existential situation. First, physicians achieve their roles by mastering basic areas of knowledge. Some physicians are smarter than others, and some know more, but all have completed the same core medical curriculum. Parsons calls this "universal achievement." Second, physicians limit their ministrations to areas of competence. They are expert in areas of health and illness, and their advice is limited to these areas. Parsons identifies this as "functional specificity." The limits of functional specificity have widened as the links between lifestyle, stress, and illness have been documented. Nonetheless, there are limits. Physicians maintain an attitude of affective neutrality. Renee Fox and Harold Lief identify this as "detached concern." Physicians are involved with the problems of their patients, but not so involved as to interfere with rational decision-making. Finally, physicians act from a stance that Parsons identifies as "collective neutrality." The physician is not guided by self-interest or the profit motive. Rather, physicians' actions are guided by altruism, by what will restore health, whatever the sacrifice or cost to the physician, patient, or collectivity.

Parsons's analysis describes normative patterns rather than empirical occurrences. His physicians live in a world in which they share values with patients and always act in the best interests of the patient. They also act as agents of social control. The physician provides legitimate excuses from work, directs treatment, and controls access to healing resources. Tension may arise because the interests of the social system and of the patient may not coincide.

THE SOCIAL CONSTRUCTION OF ILLNESS. Parsons's "sick role" is the first sociological theory to recognize that the experience of illness is determined by social factors. Many sociologists accept Parsons's basic insights but differ with him on how the experience of illness is shaped by values and beliefs that are implicit, tacit, unexamined, and variable across cultural groupings. Conflict theorists, for example, emphasize that society is made up of competing groups with different values, rather than, as Parsons argued, cooperating groups with shared values (Freidson). For these sociologists, the physician's role as a fiduciary whose actions express the interests of patients is disputed; the physician is seen instead as a moral entrepreneur who cloaks self-interest or the interests of his or her social class in a neutral scientific language.

Conflict, or labeling, theorists share with Parsons the understanding that physicians act as agents of social control but they differ about who benefits from these gatekeeping activities and what the consequences of these activities are. For Parsons, the physician's actions certifying illness serve the entire society by promoting an environment in which the individual designated as sick can later return to productive social and economic roles. There are no long-term consequences to the labeling of individuals.

Labeling theorists contend that labeling is used by the dominant classes to protect their interests, suppress the less fortunate, and reinforce established hierarchies (Becker; Freidson). Casting an individual in the sick role stigmatizes him or her and spoils life chances (Goffman; Scheff). Susan Sontag has argued that the vocabulary of illness leads those who are sick to blame themselves. Those who are vulnerable to labeling engage in a variety of social strategies to avoid it. Peter Conrad and Joseph Schneider have described how those with epilepsy, for example, attempt to stay "in the closet" with their condition rather than suffer the discrimination that attends candor.

Much of the work of labeling theorists depends on the contention that the locus of social control in the modern state has shifted. Conrad and Schneider observe that explanations of deviance now rely on "madness" instead of "badness." The dominant agents of social control are no longer clergy, but physicians. Social problems become medicalized, and the targets of therapeutic activity are more likely than not to be the socially disadvantaged. Jane Mercer, for example, found that the label mentally retarded was significantly more likely to be applied to members of minority populations.

In labeling theory a key variable of interest is social power. Labels are used to depress the social chances of the disadvantaged are also manipulated to aid the powerful. New categories of pathology emerge that create opportunities for healthcare professionals who use newly discovered syndromes to expand their power, while the social and structural conditions that generate problems remain, or become, invisible. For example, Stephen Pfohl views the discovery of the "battered-child syndrome" as a boon to pediatric radiologists and other pediatric professionals. The beating of children is not new, however, but its treatment as a medical problem is novel. Entire diagnostic classification systems may be viewed this way. Joel Kovel has criticized the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-III; now replaced by the DSM-IV), the official diagnostic system of mental health professionals, for hiding social and political meanings in apparently neutral language. The purpose of the DSM, in this view, is to enable the psychiatric profession to control the institutions of mental health.

Individuals may actively seek some labels and avoid others. Tsunetsugu Munkata points out that in Japan the label neurasthenia is widely adopted to avoid the stigmatizing term schizophrenia, while Peter Conrad has shown how both parents and school professionals embrace the label of hyperkinesis to describe unruly children. Parents accepted the label because it absolved them of blame for their children's conditions; school officials accepted the term because it offered an individual-level explanation for restive behavior, allowing them to overlook deficiencies in school organization. Many illness designations signify entities whose precise, objective markers of disease are unclear. Sufferers, however, seek the legitimation of the disease label. Suffering is a powerful determinant of self-labeling, as the proper label serves to excuse and explain behavior that would otherwise be unacceptable. The early labeling theorists concentrated on labeling as a top-down phenomenon, stressing the repressive features of labels while ignoring the benefits some labels conferred.

The fact that the powerful resist—as well as discover, create, or construct—disease classification should also not be overlooked. Phil Brown and Edward Mikkelsen describe how the inherently conservative bias of epidemiological methods that depend on population-based measures retarded the identification of an environmentally generated cancer cluster in Woburn, Massachusetts. In another case, scientific medicine and organized mining interests retarded the recognition of "black lung" as an occupational disease (Smith). Both cases illustrate how the alliance of organized science with corporate interests can burden and delay successful efforts to discover or construct disease or the cause of disease.

Social Construction and Bioethics

Two key points of contention distinguish Parsons's theory of the sick role from labeling theory. The first is whether physicians have patients' interests reliably at heart. Parsons, in claiming that physicians have a "collectivity orientation," signals his confidence that they do. For labeling theorists, however, claims of altruism are utilized to cloak self-interest. This difference in attitude is very apparent in the writing from each orientation on the role uncertainty plays in medicine. From a Parsonsian orientation, uncertainty is a problem to be overcome and a psychological burden to physicians (Fox, 1959). From a labeling orientation, uncertainty is a ploy that physicians magnify in order to control patients (Davis).

The second key difference between Parsons and the labeling theorists concerns patient autonomy. For Parsons, the only autonomous decision made by the patient is the one to seek care. After that, patients simply, and appropriately, follow the doctor's orders. Since the physician has the patient's best interest in mind, there is no reason for the patient to balk or to question. For labeling theorists, there is no reason for the patient to follow medical regimes without question, since there is no guarantee that the physician has the patient's best interest in mind.

Informed consent is based on the principles of autonomy and self-determination. Sociological description of the doctor-patient relationship, whether from Parsons or from the labeling theorists, illuminates the absence of autonomy and self-determination. Sociologists differ on the necessity and value of such principles.

The earliest sociological studies of death and dying (those of Barney Glaser and Anselm Strauss, published in 1965) described the extent to which autonomy and self-determination were missing in the doctor-patient relationship. Physicians operated in what Glaser and Strauss called a "closed awareness context." Physicians knew of fatal conditions but routinely did not pass this information on to patients, and they often colluded with family members to keep this information from patients. These practices were rationalized as kinder than being candid.

Because of informed consent, a veritable revolution occurred in the doctor-patient relationship. Candor replaced evasion. With informed consent, patients are more than ever the masters of their own treatment. The paternalism that marked Parsons's description of the doctor-patient relationship has given way to a more egalitarian, more formally contractual, relationship. While there is much to celebrate in these changes, something may have been lost. There are costs involved with a fuller patient autonomy. Under the banner of autonomy, physicians may hide behind their role as technical experts and leave weighty matters to patients. There are also new possibilities for the psychological abandonment of patients.

charles l. bosk (1995)

revised by charles l. bosk

jacqueline hart

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Encyclopedia of Bioethics