The chosen and the unchosen: How eligibility for liver transplant influences the lived experiences of patients with advanced liver disease

Abstract

Advanced liver disease is often uncurable and fatal. Liver transplant is the only curative option for patients with advanced, irreversible liver disease, but the need for new livers far exceeds the supply. Patients with the greatest need as well as the greatest likelihood of benefit, based on a complex array of biomedical and psychosocial considerations, are prioritized for transplant. The opportunity to receive a life-saving surgery no doubt has enormous consequences for patients and their healthcare providers, as does the absence of that opportunity. But these consequences are poorly characterized, especially for patients deemed poor candidates for liver transplant. Through in-depth interviews with patients living with advanced liver disease and the providers who care for them, we explore how eligibility status affects illness experiences, including patients’ interactions with clinicians, knowledge about their disease, expectations for the future, and efforts to come to terms with a life-limiting illness. We describe how the clinical and social requirements needed to secure eligibility for liver transplant lend themselves to a clinical and cultural logic that delineates “worthy” and “unworthy” patients. We describe how providers and candidates discuss the possibility of moral redemption for such patients through transplant surgeries, a discourse notably absent among patients not eligible for transplant.