Pediatric Hospice Referral: Exploring the Unrecognized Barriers and Facilitators

•Discuss three key barriers and facilitators of the pediatric hospice referral process and ways to address each of them to promote appropriate use of pediatric hospice services.•Differentiate between parent and provider perspectives on the pediatric hospice referral process. Only a small proportion of children with life-limiting illness receive hospice services at the end of life. Significant and known barriers to hospice use in pediatrics exist, including the lack of pediatric providers and the six-month life expectancy eligibility requirement. Yet even in areas with a dedicated pediatric hospice provider and specialty pediatric expertise, hospice is underutilized, suggesting that there are unrecognized barriers that have yet to be addressed. The objective of this analysis was to identify barriers and facilitators to hospice referral for pediatric patients from the perspectives of parents and providers. As the qualitative research component of a larger human-centered design process to explore pediatric hospice referral, we recruited a convenience sample (n=20) of parents, hospice staff, and primary, subspecialty, and palliative providers. Participants engaged in a single semi-structured interview to discuss their experiences with the hospice referral process. Interviews were audio-recorded, and interview transcripts/field notes were used to generate themes across the participant types. Goal alignment, tolerance of uncertainty, and existing relationships emerged as important components of the hospice referral process. Provider participants discussed needing to understand the family's often-evolving goals of care and figuring out how to provide services to match. Parents and providers identified strong existing relationships that sometimes facilitated and other times delayed or prevented hospice enrollment. Within the context of uncertainty inherent in care for children with life-limiting illness, alignment of goals of care with service provision is a critical first step in the hospice referral process. Existing relationships can provide a pathway for this alignment to occur, but may also hinder full utilization of hospice services.