Publication
Not Just Small Adults: The Birth and Early Years of a Pediatric Hospice Program
Macdonell-Yilmaz R, Ritzau J · Journal of Pain and Symptom Management · 2024
Outcomes: 1. Participants will be able to describe the need for dedicated pediatric hospice support as well as the differences in care needs of children versus adults. 2. Participants will be able to identify at least three tangible actions to promote delivery of developmentally-appropriate care for pediatric hospice patients from within an adult hospice organization. Key Message: Nearly 50,000 children die each year in the United States, yet many don't benefit from hospice support due to limited access to pediatric hospice care. Yet the needs of terminally ill children differ fro those of adults. We describe the steps taken to successfully build a dedicated pediatric team within an established adult hospice organization. Introduction: Approximately 50,000 children die annually in the United States, yet less than 10% receive hospice care despite its demonstrated benefits. Unfortunately, many terminally ill children lack access to hospice; approximately one-third of hospices nationwide report having pediatric programs. Objective(s): To describe the process of developing a dedicated pediatric hospice team from within a large, adult-centered hospice organization. Method(s): HopeHealth, a well-established adult hospice program in RI and MA with an average daily census of >700 patients and a 30-bed inpatient facility, historically cared for up to 10-12 pediatric patients annually with an average daily census of two. Recognizing that pediatric patients' needs differ from adults', a specialized pediatric team was developed. Here we detail strategies utilized to build a program providing excellent, age-appropriate care for terminally ill children and their families. Result(s): Pediatric Supportive Services formally launched in fall 2021. Steps of development included: creating a separate pediatric Interdisciplinary Group (IDG); designing formalized training, including a yearlong lecture series, open to all staff; establishing standardized operating procedures for pediatric referrals and admissions; defining practices to ensure continuity of care, including having RN case managers (CMs) perform admissions and assigning "back-up" CMs for pediatric patients; equipping the inpatient hospice unit with developmentally-appropriate equipment and supplies; embedding a pediatric hospice and palliative care physician at a partner children's hospital; and instituting staff debriefing sessions following pediatric deaths. Conclusion(s): Over two years, the Pediatric Supportive Services team has grown to an average daily census of eight with nearly 30 new admissions in fiscal year 2023. Partnering with regional hospitals and healthcare organizations, it continues to successfully provide end-of-life care to children from birth to age 25. Keywords: Interdisciplinary Teamwork / Professionalism / Managing Suffering and DistressCopyright © 2024
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.