Contradictions and Crisis

In the past two decades, however, this configuration of views has appeared to many social critics as neither necessary nor unambiguously benevolent. Medicine has been confronted with a multisided crisis in public expectation. Even those Americans least critical in their attitude toward the benefits of continued medical progress are concerned about the monetary cost. Others who are more skeptical, but still willing to concede the real equities of contemporary medical practice, deplore the ethical and human costs of bureaucratic, episodic, high-technology care. Again and again these concerns focus on the definition of disease.

The first widely expressed concern arose in regard to mental illness; it constituted what I have called elsewhere a "crisis in psychiatric legitimacy."^[18] It might with equal justice have been termed a crisis in the cognitive and administrative management of deviance. Beginning in the early 1960s sociologists and social critics began to emphasize the arbitrariness of psychiatric categories and to contend that they were in essence labels, culturally appropriate ways of stigmatizing deviance. Psychiatric thought was in good measure a mechanism for framing, and thus controlling, deviant behavior. The force of this radical critique was underlined by a nagging truth.

Medicine had already come to play a prominent role in relation to just those areas—such as sexual deviance, addiction, and even criminality—where supposedly pathological behaviors fit least comfortably into the pathological model that has explained and legitimated conventional categories of somatic illness. Psychiatry still lacks a mechanism-specific understanding of the great majority of the syndromes it treats.

A dramatic tension thus remains between psychiatry's cognitive legitimacy and clinical responsibilities. Nor is it an accident that the specialty fits uneasily into medicine's status hierarchy. The recent expansion of interest in somatic approaches to psychiatric ills demonstrates these inconsistencies as much as it does the accumulation of new knowledge and new techniques.

A second area of disease-related conflict has turned around the dominance of acute, interventionist models in medical-career priorities and institutions. The prestige of medicine and the personal health expectations of Americans have increasingly come to turn on the efficacy of scientific, interventionist medicine—a system of values and expectations that has been built into the economic as well as intellectual basis of American health care in the past half century. Yet it is a system that is widely perceived as having failed to provide adequate care for the old and chronically ill, or even humane death for the moribund.

Third-party, employer-based insurance has also been structured around the hospital and explicit disease entities. So have federal health insurance schemes. Disease has served as a moral and logical rationale for these bureaucratic reimbursement systems even though payments correspond to days of hospitalization, physician visits, or particular procedures. Specific disease entities have come to mediate between the conceptual world of medicine and the expectations of laypersons. Interactions between doctor and patient ordinarily take place in units defined and bureaucratically justified by the existence of real or presumed sickness. Health insurance has provided a measure of care and emotional security for millions of Americans and a steady flow of income to hospitals and hospital suppliers. But the levers controlling that cash flow can only be pressed by physicians. The language of diagnostic categories at once helps to expedite and to legitimate this special relationship among physicians, patients, and health insurers. Physicians in the mid-1980s complain of the growing influence of cost accounting and bureaucracy and their decreasing role in making care decisions. Diagnosis-related groups seem an obvious justification for such fears. Yet these diagnostic categories are product and symbol of, and condign punishment for, the rigid and unresponsive aspects of our cost-plus, disease-legitimated system of third-party payment. It is a system, moreover, in which physicians and the values of scientific medicine have played a pivotal role.

Rising costs have helped remind us that sickness as experienced comes in units of people and families—and not of discrete, codable diagnostic entities. It is significant that socially minded physicians throughout the

first half of this century repeatedly cautioned that patients had families, that managing an acute episode of sickness or trauma did not exhaust the possible universe of medical care options.^[19] As early as the 1920s a minority of clinicians warned that chronic and geriatric problems would become increasingly significant as the incidence of acute infectious ills declined; they warned as well that episodic, hospital-based treatment was inadequate for the optimum care of such ailments. Few contemporaries bothered to disagree, yet such concerns became, in fact, increasingly marginal to the actual work routine of many physicians—especially the specialized and often research-oriented academic elite.

A third kind of conflict grew out of the success of medicine itself in helping banish the randomness of acute infectious illness from the perceived life chances of most Americans. The great majority of our children live to adulthood. We enjoy a greater confidence in predicting our future, but at the cost of granting enormous social power to medical practitioners and institutions. It was in some ways a mutually advantageous contract—like that between the psychiatrist and the depressed or deviant patient. But even the most dramatic and undeniable achievements of medicine have their social costs.

One such cost lies in the growing problem of chronic and degenerative ills. Another lies in our cultural habit of dealing with a diversity of elusive social problems by reducing them to technical terms—holding out the promise of neat solutions. Even the most dramatic technical achievements may simply redefine problems, not solve them; or they may create new difficulties in the process of solving old ones. The neonatal intensive care unit is a case in point; so are renal dialysis and cardiac transplants. The elusive phrase, "quality of life," has become increasingly familiar in the past decade. It is hardly an accident.

As the economic and emotional stakes increase, so does the likelihood of conflict. The social meanings of disease have become increasingly the subject of debate and negotiation. Matters of cost are in some ways simple enough. Questions of value can be even more evasive. Is the prevention of sickle-cell anemia through genetic counseling a blow for equal rights or an opportunity for masked genocide? Does a collective social interest require that individuals be forced to use seatbelts? Does calling premenstrual syndrome a disease liberate or enslave women? Does the imposition of mandatory maternity leave constitute justice or handicap women in the economic marketplace? Things were much simpler for the majority of reformers in progressive America. The control of women's hours and conditions of labor seemed to them an un-

ambiguous social good, and woman's role seemed ultimately and unambiguously domestic.

In still another area, dominance of the disease entity has left the profession ill-prepared to address other medical problems that are not as easily construed in such terms. This is certainly one reason for the comparative lack of interest in geriatrics, chronic care, and maternal and child health. The old and chronically ill cannot—except episodically—be seen as sufferers from discrete and meliorable ills. Neither conceptually nor actuarially do they fit comfortably into contemporary practice patterns. The monitoring of particular organs, or intervention in acute episodes have already become the responsibility of one specialty or another; the patient constitutes a residual category. Similarly, victory over the most important and accessible causes of infant and early childhood mortality has left the profession little concerned with the "lingering" aspects of the problem, which are politically sensitive and not easily amenable to exclusively technical solutions. It is clear, for example, that the neonatal intensive care unit is not an all-sufficient answer to the problem of low weight and prematurity, but it is a more congenial and prestigious approach, and seemingly less elusive than the economic and political measures that are its natural counterparts. Similarly, the laboratory response to AIDS has been better funded and more focused than logically parallel efforts in the sphere of education and prevention.

The status of the medical profession, like the meaning of disease, has in the past decade become more rather than less ambiguous. As the technological capabilities of medicine become ever more dramatic, as we transplant hearts and fertilize ova in vitro, we have seen the parallel growth of skepticism and even hostility among laypersons. Such ambivalence is in fact an important component of attitudes toward medicine, technology, and the bureaucracies that embody and administer medical care. At the same time, we have by no means banished disease, even if we have altered the forms in which it is most likely to become a part of our lives. We still have to construct frameworks of understanding and reassurance within which we make sense of its inevitable exactions. Scientific medicine provides a fundamental, and to many individuals well-nigh exclusive, element in shaping that understanding—even in those ailments for which no effective treatment is available.

For many Americans, the meaning of disease is the mechanism that defines it; even in cancer the meaning is often that we do not yet know the mechanism. To some, however, the meaning of cancer may tran-

scend the mechanism and the ultimate ability of medicine to understand it. For such individuals the meaning of cancer may lie in the evils of capitalism, of unhindered technical progress, or perhaps in failures of individual will. We live in a complex and fragmented world and create a variety of frameworks for our manifold ailments. But two elements remain fundamental: one is a faith in medicine's existing or potential insights, another is personal accountability.

The desire to explain sickness and death in terms of volition—of acts done or left undone—is ancient and powerful. The threat of disease provides a compelling occasion to find prospective reassurance in aspects of behavior subject to individual control. Mental illness was, for example, commonly explained in the past as a possible consequence of habit patterns gradually hardened into uncontrollable pathologies. Those who avoided even occasional lapses would have little to fear. In the nineteenth-century epidemics of cholera, as we have seen, there was much talk of predisposition. The victims' behavior or place of residence explained why they, in particular, succumbed to a general epidemic influence. With decreasing fear of acute infectious disease in the mid-twentieth century, Americans have turned increasingly to a positive concern with regimen—to diet and exercise—as they seek to reduce their real or sensed risk, to redefine the mortal odds that face them. The other side of the coin is a tendency to explain the vulnerability of others in terms of their acts—overeating, alcoholism, sexual promiscuity.