Advance Care Planning in Patients with Decompensated Cirrhosis at Liver Transplant Centers

Individuals with decompensated cirrhosis (DC) in the United States (U.S.) receive costly, burdensome care at the end of life that may not be concordant with their goals and preferences. With a growing prevalence of individuals affected by liver disease over the past decade and limited capacity for performing liver transplantation (LT), solutions are critically needed. Advance care planning (ACP), a process that supports adults in understanding and sharing their personal values, life goals, and preferences regarding future medical care, is beneficial in helping patients with serious, life-limiting illnesses and their caregivers cope with the realities of their disease. Use of ACP has been associated with improved end of life outcomes, such as lower healthcare utilization and care consistent with goals. However, little is known about how often ACP occurs in patients with DC.This dissertation explores the experience of ACP in patients with DC at LT centers. Semi-structured interviews were conducted with 42 patients with DC and 46 LT providers at three major LT centers in Los Angeles. Analyses focused on understanding the extent to whichLT providers currently engage in ACP with patients with DC (Study 1), the experience of ACP from the perspectives of patients (Study 2), and barriers to ACP experienced by LT providers (Study 3). Results show that although most LT providers find early engagement in ACP acceptable, few providers engage in ACP in patients with DC at LT centers, and if goals of care discussions occur, they happen at the very end of life. Patients with DC similarly report limited conversations with providers at LT centers, but are mostly ready to have these conversations. The most common barriers faced by providers in performing ACP include an organizational culture that prioritizes transplants over other care (“transplant culture”), competing demands for provider time, role ambiguity, language barriers, and limited cultural competence. In light of these findings, we advocate for future research efforts to focus on identifying provider knowledge gaps and creating models of care that incorporate palliative care, as well as changes in policy. We believe this dissertation provides an important framework for understanding the current state of ACP in patients with DC and can direct the development of interventions that ultimately promote provision of goal-concordant care in this population