Defining "Normal": Representations of Patients' and Families' Experiences After Liver Transplantation

Dissertation, University of Pittsburgh (1997)
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Abstract

Although liver transplantation is no longer considered to be an experimental procedure, it is characterized by significant unpredictability and uncertainty before and after transplantation. It, nevertheless, offers a possible cure for a variety of debilitating and usually fatal illnesses. Based on intensive ethnographic research in the University of Pittsburgh Medical Center liver transplantation program, the oldest and largest transplant center in the world, this dissertation examines patients', families' and health care professionals' responses to this technology and its formidable entailments. This work provides a detailed description of the unique history and ethos of the UPMC program, major features of liver disease and patients' and families' experience of chronic liver disease, and the process of transplantation. Through the analysis of patients' and practitioners' narratives, this dissertation addresses dominant representations of life after transplantation, and the consequences when these representations do not concur with patients' and families' experiences, as is frequently the case. This research explores the multifaceted ways that transplantation transforms body, identity, and social relationships. In so doing, this dissertation confronts major ethical issues in transplantation, particularly considerations of informed consent and quality of life from a unique perspective, in terms of how they are enacted in the everyday lives of transplant recipients and their families. This analysis suggests potential contributions of theoretical and methodological approaches from medical anthropology for questions of concern to medical ethicists

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