Patient and Caregiver Perspectives on Palliative Care in End-Stage Liver Disease

Background:Specialty palliative care (PC) is underutilized for patients with end-stage liver disease (ESLD); however, studies exploring patient and caregiver perceptions of PC are lacking. Objectives:To explore patient and caregiver knowledge, perceptions, and preferences about PC in ESLD management. Setting/Subjects:Individuals with ESLD and their informal caregivers were recruited from a large academic medical center in the United States. Design:We conducted semistructured interviews with 15 patients with ESLD and 14 informal caregivers. Purposive sampling was used to balance both transplant-listed and transplant-ineligible patients. We used a brief description of PC to explore participants' knowledge, perceptions, and preferences about PC. Two raters coded interviews independently (kappa = 0.95) using template analysis. Results:Participants' knowledge about PC came primarily from their loved ones' experiences with PC, with many conflating PC with end-of-life care. Transplant-listed patients expressed concern that a PC referral would negatively impact their likelihood of receiving a liver transplant. After hearing a brief description of PC, nearly all participants believed that patients with ESLD should learn about PC soon after diagnosis to help support their illness understanding and coping. Conclusions:Study participants reported limited knowledge of PC and often perceived it as hospice care. After receiving education on PC, nearly all participants, regardless of transplant eligibility, advocated for early introduction of PC in ESLD care. Interventions are needed to educate patients with ESLD and their caregivers on the potential role of PC to overcome misperceptions of PC and allow earlier integration of PC into ESLD management.