Medical Authority and the Culture of Rights

Health-related social movements and their "generalization of rights" are an important feature of Paul Starr's account, in The Social Transformation of American Medicine (1982), of the partial eclipse of medical authority during the second half of the twentieth century. By "generalization of rights," Starr refers to the extension of perspectives developed in civil rights struggles to a widening range of social groups. He notes that during the 1970s, activists were championing the interests of numerous constituencies vis-à-vis medicine: women, the handicapped, mental patients, and the subjects of medical research. Advocates pressed for rights both for and within health care. The latter included the right to be fully appraised of treatment options, see one's own medical records, make crucial decisions about the course of treatment, refuse recommended services, and provide informed consent before participating in medical research. Health care advocacy challenged medical dominance and sought to equalize the power between patients and caregivers. Starr argues that health activism contributed to medicine's decline by undermining the profession's authority to retain control over the form and financing of health care services and by facilitating moves for governmental reform.

This article draws on a range of published sources to evaluate Starr's analysis of the impact on medicine of health care activism in light of recent developments in the generalization of rights. Trends in health care activism during the past twenty years include the continued institutionalization of rights within health care through legal and legislative action, the emergence of new advocacy groups including those focusing on HIV/AIDS and environmental health, and a growing emphasis on consumer rights in relation to managed care. Four developments during the 1980s and 1990s are particularly interesting for what they suggest about the future of medical authority. The first is the appearance of bioethics consultants and other personnel who identify themselves as patient advocates and who, in a variety of institutional roles, mediate between caregivers and clients. The second is the rise of types of activism that challenge medicine's claim to ownership over medical knowledge and seeks to affect the design of clinical research or the character of medical treatment. The third is the growth of movements for consumer rights and accompanying coalitions between advocacy groups and organized medicine itself. These coalitions open the possibility for medicine to recoup legitimacy with patients as it positions itself as a defender of consumers' rights vis-à-vis the managed care industry. The fourth development is direct-to-consumer marketing, in which pharmaceutical companies invoke patient empowerment in the interest of boosting sales of prescription drugs. Their marketing strategies are a reminder that health movements can be co-opted as diverse constituencies adopt the banner of patient rights for their own ends.

Some of these developments are not only unanticipated in Social Transformation, but they also rest uneasily within its analytic framework. Starr sees rights movements having an impact by securing protections in the law and by facilitating change in political, economic, and institutional arenas by fostering action by countervailing powers: government, private insurers, and institutional buyers. His framework does not readily accommodate the advent of institutional processes leading to shared jurisdictions between physicians and other professionals in which physicians alone once prevailed. Nor does he examine the direct implications for medicine of challenges to its cognitive authority or of shifts in the balance of power between doctors and patients. Despite the emphasis early in Social Transformation on cultural authority—the power to define clients' reality—patients and their encounters with caregivers are largely invisible in Starr's volume. Health care movements have generated quite different dynamics within institutional, cultural, and political arenas. Evaluating their net consequences for medicine is made difficult by ambiguity in Starr, and disagreement among sociologists more broadly, as to what are the essential underpinnings of professional standing.

Health Care Movements in the 1980s and 1990s

Despite what some observers view as significant structural obstacles to effective organization among patients, heath care activism has burgeoned since the 1970s. Magali Larson (1977) notes that, unlike the clientele of professions that provide services to institutions or...