Advance Care Planning in Patients with Decompensated Cirrhosis at Liver Transplant Centers: A Qualitative Study (SCI944)

Abstract

1.Describe the experience of advance care planning at liver transplant centers from the perspectives of patients.2.Describe the experience of advance care planning at liver transplant centers from the perspectives of providers. In the United States, patients with decompensated cirrhosis (DC) receive burdensome, costly care at the end of life that may not be consistent with their wishes. Advance care planning (ACP) is a process that supports adults in understanding and sharing their values, goals, and preferences regarding future medical care, but little is known about how ACP occurs in patients with DC. Our aim was to explore the experience of ACP in patients with DC at liver transplant (LT) centers. We conducted semi-structured interviews with 42 patients with DC and 46 LT providers across three LT centers in Los Angeles between July 2017 and May 2018. Audio-files were professionally transcribed. Two qualitative researchers developed a codebook corresponding to three major domains of ACP (prognosis; discussing values, goals and preferences; and surrogate decision makers [SDM]) and assigned codes to all transcripts. Data were imported to NVivo 12. “Pile-sorting” was used to generate themes. Providers frequently expressed prognosis to patients in terms of their chances of receiving a transplant but delayed conversations about death until the end of life (EOL). Patients often contemplated death, but seldom discussed these concerns with providers. Many patients engaged in discussions with family members about their values, goals, and preferences for EOL care. However, discussions were not initiated by LT providers, who found discussing limits to aggressive care was inconsistent with LT. Most patients reported having designated an SDM though only 5 (12%) had an available advance directive in their medical record. Providers engaged in discussions about SDMs when patients were hospitalized, whereas social workers discussed this routinely in all venues (Figure 1). Please contact first author for figure. Patients with DC performed components of ACP independently of providers. Providers rarely initiated conversations until patients were dying.