Early Termination of a Palliative Care Trial: Perspectives of Multiple Stakeholders on Barriers to Palliative Care and Research.

Abstract

Background: Although payment for home-based palliative care (HBPC) is slowly spreading, there remains significant challenges in engaging patients and physicians in palliative care programs and research. This challenge was illustrated in our previous HBPC trial that failed to identify and enroll eligible patients in both the study and in HBPC services. Objectives: The objective of this study was to determine challenges to participation in HBPC and in research among patients, caregivers, primary care physicians, HBPC providers, and accountable care organizations (ACOs). Design: We conducted a qualitative study employing individual interviews and focus groups. Setting/Subjects: We recruited patients (n = 17), caregivers (n = 8), primary care providers (n = 31), home-based care providers (n = 25), and ACO administrators and leaders (n = 12) from California, United States. Measurements: We used semistructured interview protocols to elicit perceived barriers to HBPC services and research. Results: We identified four overarching themes related to barriers to HBPC and palliative care research. These themes included: (1) limitations of patient recruitment strategies; (2) timing of stakeholder engagement; (3) lack of palliative care health literacy; and (4) novelty of the HBPC market. Conclusion: These findings point to factors that contributed to the failure, and subsequent closure, of the original randomized controlled trial. Our findings may inform the further development of HBPC and, more generally, palliative care practice and policy. ClinicalTrials.gov Identifier: NCT03128060.