Medical technology and the crisis of experience: The costs of clinical legitimation

This paper considers the relationship between the crisis of experience in chronic illness and the crisis of legitimation in medicine. Clinical approaches to chronic illness characteristically apply medical technologies to highly uncertain diseases. The many social problems that result from this technologically-dominated approach are evident in the dynamics of illness experience. Therapeutic ‘solutions’, however, attempt to set technical boundaries to the definition of health problems and largely redefine the social component of the medical problem. Success is defined as the effectiveness of treatment and failure as largely due to individual deficiencies of unsuccessful patients in an attempt to establish the legitimacy of quasi-experimental medical technologies.

The example presented here is the problem of kidney failure (end-stage renal disease), a chronic disease which requires treatment by dialysis (three times per week, six hours per treatment) or kidney transplantation. In the United States this is the only chronic illness for which a federal program (since 1972) pays virtually all treatment costs for over 40,000 patients. Over 1 billion dollars a year are expended on these medical technologies. This disease is representative of the technical approach which dominates chronic illness care. In this paper problem definitions in end-stage renal disease that are derived from clinical practice and technical break-throughs will be analyzed in terms of their appropriateness for the social dynamics of the illness experience. The divergence between the technological approach and the dynamics of experience will be illustrated by an analysis of the activities of a renal treatment program. Excerpts from staff and patient interviews, observation in the clinic and medical record abstracts will contrast the extreme tension and uncertainty engendered in the treatment of this disease with the narrow problem definition of the technological model.

The two central questions raised are the following: (1) To what extent does the credibility of clinical practitioners in highly ambiguous settings depend on denying legitimacy to the patient's illness experience? and (2) How do these dynamics intensify the crisis in medical credibility and exacerbate the tragedy of catastrophic illness?