Navigating Medical Uncertainty: The Rise of Chronic Illness and the Transformation of U.S. Health Care

• In Event: 480 - Section on Medical Sociology Refereed Roundtable Session and Business Meeting
  In Refereed Roundtable 60min: Table 07. Health Policy

Abstract

Since the 1950s, increasing rates of chronic illness overtook rates of acute illness and became the largest challenge to US healthcare. The social organization of healthcare has been slow to adapt both institutionally and in the biomedical model of illness and the body. This paper focuses on the case of chronic illness as a central group of individuals who must navigate and who constitute these changes in healthcare. Due to the multiplex nature of chronic illness, these patients interact with a vast array of different parts of the shifting and often conflicting fields of the healthcare system—including “alternative” systems of medicine. In nineteen interviews with chronically ill individuals, I trace the trajectories of the chronically ill in obtaining their healthcare. By studying meso-level interactions in how chronically ill patients navigate their care, I connect the “insider” experiences of patients with the macro-structural context of modern healthcare delivery. I find that the literatures on the decline of medical authority and the rise of “patient expertise” capture many of the attitudes and initial actions of participants; however, the complex reality of navigating healthcare leads nearly all participants back to rely on the expertise of biomedicine or integrative medicine, a cultural broker between biomedicine and alternatives. Understanding these patients’ real process navigating healthcare reveals not only the strategies and trajectories of the chronically ill, but also illuminates the difficulties facing all patients trying to obtain care in this contemporary healthcare system.

Author

• Lindsay Berkowitz, UC Berkeley