Controlling death--compromising life: chronic disease, prognostication, and the new biotechnologies

Within the modern culture of control, patients and physicians seek to actively shape the uncertainty of prognostications concerning the course of disease and the anticipated effects of therapeutic and surgical interventions. This article discusses the results of a three-year ethnographic study of persons with cystic fibrosis (CF) who undergo double-lung transplant. It draws on interviews with a difficult-to-access patient group, adult CF sufferers, and investigates their dilemmas with regard to having or not having a double-lung transplant. It situates their decisions within a complex framework: the denial of death and disability in technological modernity, the consequent emphasis on cure and saving life at any cost, rather than the management of chronic illness, the extent to which health and illness constitute identity, and the problems of CF patients conceiving their life narrative when life will be short. This framework produces two key questions: Do patient beliefs in the progress narratives of medicine overshadow other considerations, and are biotechnologies such as organ transplant a calculated gamble on a better life or an uncertain reliance on biomedical expertise? I argue that risk interpretation is heavily influenced by the constant introduction of new therapeutics that intersect with social technologies of normalization to strongly influence patient decisions concerning the pursuit of high-risk surgeries such as organ transplant, surgeries that sometimes hasten a patient's decline and death.