Custom Caring for Your Community: Models of Community-Based Pediatric Palliative and Hospice Care

Key Message: Pediatric Community and home-based palliative care and hospice is a growing field, though with great variability in its expression. This can lead to challenges in its application and provides an opportunity for customization for one’s unique community.

Abstract: As the need for pediatric palliative and hospice care continues to grow, communities across the country are responding with innovative models that extend specialized support to children and families throughout the continuum of care. Growth has required programs to tailor their approaches to the unique needs of their communities and staff, driving continuous innovation. This multidisciplinary presentation highlights three unique community-based programs that are advancing community and home-based care in diverse settings, by creating distinctive team structures, collaborating with larger medical institutions and community hospice programs, and pursuing a commitment to meeting community needs while promoting health equity. Presenters will describe challenges faced, as well as methods to discover innovation in the face of uncertainty. Real-world lessons learned in program development will be emphasized, including strategies to overcome systemic and logistical barriers, build sustainable partnerships, and meet the needs of medically complex children and their families. Attendees will gain practical insights and inspiration from three innovative models, offering valuable perspectives for those developing or enhancing pediatric palliative and hospice services in their own community.

References: 1. Weaver MS, Chana T, Fisher D, et al. State of the Service: Pediatric Palliative and Hospice Community-Based Service Coverage in the United States. J Palliat Med. 2023;26(11):1521-1528. doi:10.1089/jpm.2023.0204
2. 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.
3. Lindley LC, Svynarenko R, Mooney-Doyle K, Mendola A, Naumann WC, Keim-Malpass J. Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study. Am J Hosp Palliat Care. 2022;39(3):282-288. doi:10.1177/104990912110186611.
4. Chirico J, Donnelly JP, Gupton A, et al. Costs of Care and Location of Death in Community-Based Pediatric Palliative Care. J Palliat Med. 2019;22(5):517-521. doi:10.1089/jpm.2018.0276