Qualitative Study of Longitudinal Specialty-Aligned Palliative Care for Inpatients with Advanced Liver Disease

Outcomes 1. Describe the benefits of a longitudinal model of specialty-aligned inpatient palliative care for patients with advanced liver disease.2. Understand key areas of need to improve end-of-life care delivery for patients with advanced liver disease. Key Message We explored perspectives on a longitudinal specialty-aligned palliative care intervention for hospitalized patients with advanced liver disease (AdvLD) through qualitative interviews with patients, caregivers, and inpatient clinicians. Respondents highlighted that longitudinal palliative care delivery promoted trust and facilitated serious illness conversations and symptom management for hospitalized patients with AdvLD. Areas of ongoing need included improving transitional and end-of-life care. Introduction/Context Hospitalized patients with advanced liver disease (AdvLD) experience substantial symptom burden, frequent readmissions, and high mortality, yet palliative care is underutilized for this population. Objectives We explored the benefits and areas of ongoing need of a longitudinal specialty-aligned palliative care intervention for hospitalized patients with AdvLD through qualitative interviews with patients, caregivers, and inpatient clinicians. Methods Between 6/2022-9/2022, we conducted individual interviews with recently hospitalized adult (age ≥18) patients with AdvLD, their caregivers and their inpatient clinicians (internal medicine, hepatology, critical care, transplant surgery, palliative care) enrolled in an inpatient palliative care clinical trial. We asked participants their perspectives regarding delivery of longitudinal specialty-aligned inpatient palliative care to enrolled patients. We conducted a team-based qualitative thematic analysis using a multistage iterative approach, including both prefigured and emergent dimensions. Results Nineteen individuals (3 patients, 3 caregivers, 13 clinicians) participated in interviews. Benefits of the intervention were identified across all participant groups. Respondents highlighted the value of the palliative care team providing longitudinal care across multiple readmissions, which provided a broader picture understanding of the patients and their disease trajectory to inpatient teams and their caregivers. The longitudinal model of care resulted in trust from all participants, which facilitated serious illness conversations and inpatient symptom management of pain, depression, and anxiety by the palliative care team. Areas of ongoing need varied across participant groups. Clinicians highlighted a need for improved care coordination to allow for ongoing palliative care delivery in the outpatient setting. All participant groups highlighted the need to improve management of refractory ascites and hepatic encephalopathy at end-of-life. Conclusion A longitudinal model of specialty-aligned palliative care promoted trust and facilitated serious illness conversations and symptom management for hospitalized patients with AdvLD. Next steps include developing processes and education to improve transitional and end-of-life care of patients with AdvLD. Keywords Models of Palliative Care Delivery / Scientific Research