Bridging Gaps in Care: A Framework for Building a Community-Based Pediatric Palliative Care Program

Key Message: This session will present a framework for the design, implementation, and evaluation of a home-based pediatric palliative care (PPC) program, created as a partnership between well-established hospital-based palliative care and home-care programs. This session will also summarize lessons learned to improve patient access to interdisciplinary PPC in the home setting.

Abstract:

Background: Approximately 698,000 children in the U.S. live with serious illness, and home is often the preferred site of care for these families (1). While over 86% of U.S. children’s hospitals have a PPC program, only one-third of programs offer home services (2). Community-based palliative care programs serving the adult population have shown increased patient satisfaction, improved quality of life, reduced hospital utilization, and increased hospice enrollment (3). While similar outcomes for children who receive home-based PPC are currently not well known, there is a documented need for home-based PPC support that is not met by hospice or the limited existing community resources (4).

Approach: The current PPC program within a free-standing quaternary children's hospital includes inpatient and outpatient consultation with referrals to community hospice agencies when patients approach end-of-life. To build the community-based PPC program, the team prepared a proposal for hospital leadership that aligned with the hospital’s strategic goal of increasing community-based care and developed a partnership with the existing home-care department leadership to support interprofessional team training and regulatory compliance.  The team developed a logic model to ensure that the program’s structure of nursing and social work home visits was supported and aligned with existing hospital workflows. These workflows include after hours on-call access to the PPC team, home-care department supervision, and subspecialty collaboration to support care coordination needs. The logic model determined relevant outcome metrics to evaluate program impact including ER visits, hospitalizations, hospice referrals, location of death, child symptom burden, and family-reported care experiences. 

Implications: Utilizing a stepwise framework, a community-based PPC program was designed and implemented. Preliminary data on referral volume, utilization of PPC resources, and parent-reported outcomes suggests the program is bridging the gap in care for children with serious illness at home. Continued evaluation will determine program strengths, limitations, and future directions.

References: 1. Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: A cross-sectional analysis. J Pain Symptom Manage. Feb 2017;53(2):171-177. doi:10.1016/j.jpainsymman.2016.08.020  

2. Rogers MM, Friebert S, Williams CSP, Humphrey L, Thienprayoon R, et al. Pediatric palliative care programs in US hospitals. Pediatr. Jul 2021;148(1):e2020021634. doi:10.1542/peds.2020-021634  

3. Yosick L, Crook RE, Gatto M, Maxwell TL, Duncan I, et al. Effects of a Population Health Community-Based Palliative Care Program on Cost and Utilization. J Palliat Med. 2019 Sep;22(9):1075-1081. doi: 10.1089/jpm.2018.0489. Epub 2019 Apr 5. Erratum in: J Palliat Med. 2021 Feb;24(2):313. doi: 10.1089/jpm.2018.0489.correx. PMID: 30950679; PMCID: PMC6735317.

4. Jarrell JA, Grossoehme DH, Friebert S, Ajayi TA, Thienprayoon R, Humphrey L. Challenges in Pediatric Home-Based Hospice and Palliative Care: A Case Series. J Pain Symptom Manage. 2024 Oct;68(4):e319-e324. doi: 10.1016/j.jpainsymman.2024.06.027. Epub 2024 Jul 6. PMID: 38972553.