Pulse Check: Status Update on Pediatric Palliative and Hospice Community-Based Coverage

Area of Science:

• Palliative Care
• Hospice Care
• Pediatric Healthcare Access

Background:

• Pediatric literature highlights community-based palliative and hospice organizations' role in extending care for children.
• An updated understanding of these services post-pandemic is crucial.

Purpose of the Study:

• To offer a current snapshot of pediatric palliative and hospice services and staffing in US community-based organizations.
• To identify trends and challenges in pediatric end-of-life care provision.

Main Methods:

• An online survey was distributed to organizational members of the National Alliance for Care at Home in the US.
• Data were collected from 295 palliative and hospice organizations across all 50 states and Washington, DC.

Main Results:

• Nearly half of organizations increased pediatric patient acceptance; 6% newly accepted pediatric patients post-2020.
• Trauma is an increasing reason for pediatric enrollment, while nonmetro areas offer fewer services.
• Medicaid is the primary reimbursement (47%), with staffing shortages, low referrals, and funding as key barriers.

Conclusions:

• Children are underrepresented in community-based hospice care, with disparities widening in nonmetro regions.
• Further research on training, staffing, and funding models is recommended to improve pediatric palliative and hospice care access.