Pediatric Palliative Care at CAPC

Pediatric palliative care has grown significantly over the past decade. Yet our sickest pediatric patients (i.e., neonates, perinates, infants, children, adolescents, and young adults) still routinely lack access to high-quality palliative care. CAPC's work in pediatric palliative care aims to build field infrastructure, drive program growth, and achieve equitable access.

In February 2019, CAPC convened a steering committee of pediatric palliative care leaders representing diverse disciplines and organizations. Together, they identified strategic solutions to major access barriers and ranked the field's highest-priority actions through a national survey of interdisciplinary professionals.

That momentum led to the April 2020 launch of the National Coalition for Hospice and Palliative Care's Pediatric Palliative Care Division—a national hub for coordination, communication, and strategic fundraising across the field. CAPC is represented in the Division by Toluwalaṣé (Laṣé) A. Ajayi, MD FAAP, UC San Diego; and Alice Bass, MSN, APRN, CPNP-PC, FPCN, Nationwide Children’s Hospital. The Pediatric Palliative Care Division is focused on six key priorities to improve serious illness care for children, families, and caregivers. Visit the NCHPC Pediatric Division website to learn more, or download the 2026 Pediatric Public Policy Agenda for the current priorities in detail.

CAPC is actively engaged across four strategic areas, each designed to expand access and improve quality for pediatric patients and families/guardians living with serious illness.

Pediatric Palliative Care Delivery

Inpatient Pediatric Palliative Care Programs

This toolkit offers program design frameworks, staffing models (including an Inpatient Pediatric Staffing Worksheet), clinical tools, and referral criteria to help hospitals build and sustain a pediatric palliative care service for children and young adults with serious illness.

Community-Based Pediatric Palliative Care Programs

From 2023 to 2025, CAPC interviewed pediatric palliative care programs and key informants across the country to document how community-based care is being delivered, structured, and sustained. The insights from this national effort are now driving the development of new tools and resources to help community-based pediatric palliative care programs grow, strengthen, and better serve seriously ill pediatric patients and their families/guardians.

Pediatric Palliative Care: Billing and Business Planning

• Billing and Coding Toolkit

Clinical Training Learning Pathways for Pediatrics

• Introduction to Palliative Care
• Foundational Skills for Pediatric Clinicians
• Communication Skills for Conversations About Serious Illness
• Palliative Care Training for Child Life Specialists
• Leadership Training for Palliative Care

State and Federal Advocacy

• Federal Policy in Palliative Care
• State Policy in Palliative Care
• State Palliative Care Forum

Pediatric Palliative Care Virtual Office Hour

Join us for this bi-monthly, small-group consulting call about pediatric palliative care. Bring your questions related to strategic planning, program development, communication techniques, and managing operations for the pediatric palliative care program.

The field has never been better positioned to close the gap between need and access. CAPC's pediatric palliative care work is grounded in strong, active partnerships with the American Academy of Pediatrics, Courageous Parents Network, the Pediatric Palliative Care Coalition, Stanford Children's, and clinical leaders across the country—collaborations that bring together expertise, reach, and shared commitment to improving care for seriously ill pediatric patients and their families/guardians.

Together, we are advancing community-based care models, strengthening inpatient programs, expanding training opportunities for the broader pediatric workforce, and tackling the financial sustainability barriers that limit what programs can do. Every pediatric patient living with serious illness deserves access to this care. Through these partnerships, we're building the infrastructure to make that possible.