End-stage renal disease (ESRD) signals the end of kidney function, leaving patients with two life-saving options: dialysis or transplant. In this project, I explore some of the moral difficulties posed by technological interventions. I conducted ethnographic research with patients, and their professional and lay caregivers, including 47 narrative interviews. Their accounts of ESRD utilized the concepts of evidence-based medicine, patient-centred care and quality of life to “emplot” stories about managing uncertainty. But it became clear that these concepts do not provide uncomplicated answers to the problems of choice, autonomy, knowledge and power in medical decision-making. For instance, quality of life, while attempting to reconcile technological possibilities with our eschatological imagination, was discussed as both a source of consolation and as a possible misdirect. I suggest that the medical future may involve greater exchange between evidence-based medicine, patient-centred care, and quality of life, but that achieving this end will require an appraisal of the premises and practices distinctive to each paradigm. My research provides an analysis of the overlaps and discontinuities of these approaches in ESRD in the hope of contributing to a more humane science.
This research was funded by a Social Sciences and Humanities Research Council Scholarship and an Institute of Health Economics Graduate Student Research Grant.