Home-Based Palliative Care Team Perspectives on Challenges in Patient Referral and Enrollment

Abstract

Context: As funding for home-based palliative care continues to expand, there is an increasing need to understand barriers to patient referral to and acceptance of home-based palliative care.

Objectives: The aim of this study was to elicit perspectives of home-based palliative care administrators and providers on barriers encountered in identification, referral, and enrollment of patients eligible for home-based palliative care.

Methods: We conducted a qualitative study employing focus groups of nine home-based palliative care agencies across California. Focus groups were audio-recorded and transcribed. Using thematic analysis, researchers independently coded the transcripts and identified themes from the codes.

Results: A total of 25 HBPC staff participated in the nine focus groups. Participants included both clinicians (n = 17) and administrators (n = 8). Our analysis revealed 13 themes that fit under four major thematic categories: 1) lack of formal payment structures (few HBPC payors and variation in payment and services among payors), 2) agency structure barriers (limitations of electronic medical records and multiple lines of business), 3) patient- and family-level barriers (misconceptions and/or lack of palliative care knowledge, uninformed of the referral and/or no warm hand-off, reluctance to have strangers in the home, overwhelmed with health issues and related services, HBPC service refusal/unresponsive to outreach), and 4) physician-level barriers (misconceptions and/or lack of palliative care knowledge, variability in HBPC payment and services, lack of time, patient ownership).

Conclusion: HBPC providers identified a myriad of barriers that preclude patient access to HBPC. With growing provision of HBPC services, greater efforts to overcome these barriers are needed.

Keywords: Palliative care; barriers to care; home based care; patient enrollment challenges; qualitative research.