Palliative Care and Advanced Directive Practices at Liver Transplant Centers in the United States

Patients with cirrhosis have a decreased quality of life due to decompensations of their underlying disease. While liver transplantation (LT) has improved outcomes and quality of life for patients with cirrhosis, many patients die or are delisted before transplant. Despite high morbidity and mortality, palliative care (PC) services are underutilized for patients with cirrhosis. To evaluate current PC and advance care practices at LT centers, a survey was designed and sent to 115 U.S. LT centers. Forty-two surveys were completed (37% response rate) with representation from all United Network for Organ Sharing regions. Nineteen institutions (46.3%) reported 100 or fewer waitlisted patients, while 22 (53.6%) reported more than 100. Twenty-five institutions (59.5%) reported 100 or fewer transplants performed in the last year and 17 (40.5%) reported more than 100. Nineteen transplant centers (45.2%) require patients to discuss advance directives as part of the LT evaluation, while 23 (54.8%) do not. Only 5 centers (12.2%) reported having a dedicated PC provider as part of their transplant team and only 2 reported requiring patients to meet with a PC provider as part of the LT evaluation process. This study shows many LT centers do not engage their patients in advance directive discussions and highlights the underutilization of PC services in the LT evaluation process. Our results also show minimal advancement in the collaboration between PC and transplant hepatology over the last decade. Encouraging or requiring LT centers to hold advance directive discussions and incorporate PC providers into the transplant team is a recommended area for improvement.