Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Doctor of Philosophy

Program

Health Information Science

Supervisor

Knabe, Susan

Abstract

My dissertation is narrative-based interdisciplinary investigation of waitlist death that focuses on my sister’s wait for a liver transplant and her death 18 years ago. While the period of waiting for a transplant is accompanied by great life-and-death uncertainty, the possibility of dying is often ignored and overshadowed by an emphasis on redemptive narratives and a “second chance at life.” From the beginning, organ transplantation was a field dominated by hope and the fantasy that biomedicine can overcome illness and mortality; as such it is narrowly understood through a lens of progress where loss, failure and death are given little regard and attention. Successful feel-good narratives in liver transplantation also tend not to take into account the way that evidence-based allocation policy (based on an algorithm that predicts 3-month mortality risk) shapes patients’ stories. All liver transplant patients are ranked according to a “score” that measures disease severity according to mortality risk even if a patient’s symptoms and functional health status suggests they are much closer to death than the score’s prediction. Decision-making based on objective data is meant to be rigorous and fair, but it is also highly impersonal and turns a blind eye to how it can map poorly onto lived experience and the circumstances of individual patients. My dissertation uses a health humanities approach and integrates elements of autobiography and creative nonfiction with scholarly research and writing. Using the concrete details of my sister’s experience, I argue that the exigencies of evidence-based medicine, the plot of successful stories and conventional tidy narratives are a poor fit for the uncertainty, indeterminacy and contingency of waiting for a liver transplant and waitlist death. My examination of the unique characteristics of waitlist death, and the contextual factors that influence them, will add to the body of knowledge on liver transplantation from the patient’s perspective.

Summary for Lay Audience

My dissertation is an investigation of waitlist death that focuses on my sister’s wait for a liver transplant and her death 18 years ago. While the period of waiting for a transplant is accompanied by great life-and-death uncertainty, the possibility of dying is often ignored and overshadowed by an emphasis on redemptive narratives and a “second chance at life.” From the beginning, organ transplantation was a field dominated by hope and the fantasy that biomedicine can overcome illness and mortality. Loss and failure are given less attention than feel-good narratives. My dissertation integrates elements of autobiography and creative nonfiction with scholarly research and writing. Using the concrete details of my sister’s experience, I argue that the plot of successful stories and the conventions of tidy narratives are a poor fit for the uncertainty and indeterminacy of waiting for a liver transplant and waitlist death. My examination of the unique characteristics of waitlist death, and the contextual factors that influence them, will add to the body of knowledge on liver transplantation from the patient’s perspective.

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