"I Don't Qualify for a Liver Transplant—Now What?" What is the Role of Palliative Care in End-Stage Liver Disease? (FR451)

Abstract

•Describe the current evidence for palliative care interventions in the end-stage liver disease population.•Describe challenges in caring for a patient with end-stage liver disease from patients, caregivers, and healthcare providers’ perspectives.•Describe study designs and intervention components necessary to advance research in improving the quality of care in end-stage liver disease. Of the 400,000 patients with end-stage liver disease (ESLD) in the United States, only about 2% are transplanted; the remainder will die from the disease. However, despite high symptom burden and advanced care planning needs, only 10% of ESLD patients deactivated from the transplant list are referred to palliative care. There is a paucity of high quality data and standardization in use of palliative care in ESLD compared to other forms of end-stage organ dysfunction (e.g., heart failure, chronic obstructive pulmonary disease). In preparation for developing an ESLD clinical and research program, we conducted an extensive rapid review of ESLD literature from six databases (PubMed, EMBASE, CINAHL, PsychInfo, clinicaltrials.gov, Cochrane) for adults with end-stage liver disease who received palliative care interventions. In the first part of the session, we will present the results of this literature review and highlight important studies. Based on these results, we have designed a pilot qualitative study to understand perspectives from patients, caregivers, and healthcare providers with regards to challenges and opportunities in identifying and managing patients with end-stage liver disease. In the second part of the session, we will review the results of this pilot study and review the specific challenges and opportunities identified. Lastly, we will explore key elements of research design and intervention development for this population necessary to further research in this area of critical need.