The Converged Experience of Risk and Disease

As a second-year medical student twenty-five years ago, I watched an attending physician approach one senior house officer after another asking for the names of hospitalized patients on whom students could practice taking medical histories and performing physical examinations. A suitable patient would have been admitted to the hospital with an as yet undiagnosed collection of symptoms and signs (in addition to being conscious and able to speak English). Each house officer was in charge of thirty to fifty patients but could find only one or two who were suitable. My medical teachers had evoked in their lectures and at the bedside the sick patient who experienced illness uncorrupted by medical knowledge and prior medical intervention. That few such patients existed in the hospital did little damage to this ideal type, whose existence was sustained by older assumptions about clinical practice and medical education. In the intervening years, the gap between our idealized view of the sick patient and the actual one who attends our hospitals and clinics has only grown. Hospital and outpatient care is less often about new, undiagnosed, symptomatic problems than it is about existing chronic disease, especially the expectant management of problems predicted or found by other interventions and earlier medical surveillance, for example, the placement of pacemakers in patients previously found to have slow or irregular heartbeats or colonoscopies done after an abnormal fecal occult blood test. Central to patients' actual presenting complaints has been a new “risky” way of experiencing health and disease. While many observers have noted medicine's increasing focus on disease prevention and risk among the erstwhile healthy, few have recognized the profound parallel developments among the already sick or diagnosed. Some observers have highlighted the important role of the pharmaceutical industry and medical research in jointly producing both new preventive medicines and the new risk factors that these medicines target (Greene 2007). Others have stressed a new style of medical surveillance in which normal populations have been surveyed and subjected to a growing number of demands to comply with medical directives (Armstrong 1995). Although these accounts focus on the radical expansion of preventive medicine into the otherwise healthy population, much less attention has been paid to parallel developments among the chronically ill. There has been a profound, if largely unnoticed, shift in who is understood to be suffering from chronic disease and the disease experience itself. In many instances, chronic disease has become a kind of risk state in which diagnosis, treatment, and “disease management” are directed at reducing the chances of anticipated, feared developments. This shift has resulted in a converged experience of risk and chronic disease. On one side of this convergence, the number of otherwise healthy individuals who are considered to be “at risk for,” or have risk factors for, a particular disease has grown immensely; their bodies have been subjected to increased surveillance; and the risk state itself has become more embodied and, in other ways, more disease-like. In large measure, these changes have resulted from the expanding medicalization processes noted by sociologists and others over the past few decades. From the other side, the experience of chronic disease increasingly resembles the experience of people at risk for disease. Because this latter change has received much less attention than have the different ways in which previously healthy people have been recruited into and reshaped by new risk categories, I will focus on it here. Distinguishing the disease experience from the risk experience is difficult because so many developments are obliterating this difference. In everyday usage, disease is understood to be a pathological process producing ill health, including symptoms. The risk of disease is some statistical probability that ill health might happen. As an imminent state, there can be no illness experience that emanates from risk in any direct, physiological sense (of course, emotional distress and other psychological consequences often follow from knowledge of and beliefs about risk; see Barsky 1988). If readers are imagining exceptions to these definitions, they are probably thinking about the processes I am describing. Screening and early detection of HIV, for example, can, in a very short time, transform someone from feeling healthy to being “positive for HIV,” leading to preventive drug treatments that cause symptoms. In this article, I first describe the convergence of the experience of risk and chronic disease in modern American medicine and society. Then I analyze some of the reasons why the chronic disease experience has become so risky, followed by a discussion of the consequences for individuals and populations, along with some clinical and policy implications. Most of my observations are from a small but very prevalent set of risks and diseases: breast cancer, asthma, diabetes, and hypertension. My focus is on medical developments and their effects on the patient's experience of disease. These developments have not occurred in a vacuum, but in order to highlight those influences that are subject to some clinical and policy response, I will not discuss the larger social, economic, and political changes that constitute sociologists' and others' observations that Western societies are increasingly becoming risk societies. Such societies are engaging in the politics of risk distribution as much as resource allocation, are facing dangers of borderless and often invisible global threats (bird flu, terrorism, extensively resistant tuberculosis, global warming), and thus are turning inward—reflexively—to make sense of these dangers and responses (Beck 1992; Giddens 1990). Some, but by no means all (see, e.g., Conrad 2007), sociologists feel that the medicalization concept—so closely tied to the transformed risk experience—has lost its utility.1 They note that medicalization has strayed far from its original meaning and context: the labeling of deviance as disease in order to expand medical authority (Davis 2006). In contrast, the term medicalization has come to denote actions by many nonphysician actors (patients, disease advocates, bureaucrats, drug companies, etc.) that, through myriad processes, result in the expansion of medical entities and the numbers of individuals recruited into them. While I understand the importance of recovering some conceptual clarity and political bite, social science scholarship and health policy would be poorly served if we tried to set back the clock and narrow the term's scope. It is not simply that the sociologists' concept has expanded in the intervening years. Rather, there has been a transformation in how ill health has been produced, labeled, managed, and ultimately experienced.