This toolkit provides practical guidance for leaders, clinical champions, and administrators developing or expanding pediatric palliative care services. Resources focus on program planning, staffing, operations, partnerships, and sustainability to help organizations build high-quality programs that meet the needs of pediatric patients (i.e., neonates, perinates, infants, children, adolescents, and young adults) with serious illness and their families.
Introduces program leaders to the pediatric palliative care landscape, national standards, and quality frameworks. Use these resources to build foundational program knowledge and make the case to leadership.
Developed in 2022 by the National Hospice and Palliative Care Organization (NHPCO), this resource is a 36-page national standards document for safe, high-quality pediatric home-based care. Use it as a blueprint when evaluating or strengthening your home-based service line; pull the eligibility and staffing sections first.
The National Consensus Project (NCP) Clinical Practice Guidelines are the national standard for high quality palliative care. National Consensus Project for Quality Palliative Care, 2018.
Pediatric-specific examples mapped to each of the 8 NCP domains. Use alongside the NCP Guidelines to translate each domain into concrete pediatric practice.
Articulates the clinical and operational value of a pediatric palliative care program. Use when building internal support with department heads or hospital administrators.
Talking points and testimonials from children's hospital leaders who have invested in palliative care. Use when preparing for a specific budget or expansion conversation with hospital leadership.
Defines and distinguishes the role of palliative care, hospice, and home care for pediatric patients with serious illness.
A nationally recognized accreditation for palliative care programs. Use when your program is ready to pursue formal certification, or to benchmark against certification-level standards now.
Commission on Cancer standards requiring palliative care integration in oncology programs. Use if your pediatric program serves oncology patients, to align with accreditation requirements your hospital may already be pursuing.
Evidence-based psychosocial care standards covering distress screening, family/sibling support, and interprofessional practice. Use when designing your program's psychosocial and family-support services.
Palliative Care Leadership Centers (PCLC) provide palliative care teams the skills and organizational abilities needed to develop and deliver the highest-quality, sustainable programs.
The tools in this section guides program leaders through foundational program design decisions, from framework to care model to staffing.
A needs assessment framework for designing a pediatric palliative care program. Use to evaluate your organization's current state and identify gaps before you commit to a model.
Findings from CAPC's interviews with pediatric programs nationwide (2023–2025). Use to see how comparable programs are structured before finalizing your own design.
In this on-demand webinar, three pediatric palliative care programs share their innovative ideas for comprehensive, interprofessional, and sustainable community-based care.
Key factors affecting inpatient program design, patient volume, and staffing. Use alongside the needs assessment to ground design decisions in realistic operational parameters.
A worksheet for estimating patient volume and staffing needs. Use early in planning to build a data-informed case for the resources and team size you're requesting.
In this Virtual Office Hour, ask questions related to strategic planning, program development, communication techniques, and managing operations for the pediatric palliative care program.
Builds the financial case for a pediatric palliative care program, from business planning basics and demonstrating value to funding and billing.
Outlines the essential components of a pediatric palliative care business plan. Use to quickly orient your team and frame how service design decisions drive your financial model.
Covers volume estimation, funding assumptions, and financial modeling. Use to build a data-informed financial case before pitching hospital administration or foundations.
Maps program expenses against funding sources across start-up and years 1–3. Use to size a realistic budget request before your pitch to leadership.
Tools for business planning, developing a program budget, and billing for pediatric palliative care services.
Exploring the Need for Palliative Care in a Pediatric Value-Based Care Model
Learn to operationalize your pediatric palliative care program, including messaging for referrals and positioning, measurement, staffing, and more.
Tools to help health professionals improve health equity for all people living with serious illness.
Tools for refining your palliative care program’s marketing strategy, and your messaging.
Use this toolkit to select program measures that demonstrate value and support quality care delivery. Overcome common measurement obstacles and synthesize program data.
Hire and onboard your staff, manage program operations, and ensure a healthy high-functioning team using this toolkit.
Supports ongoing growth, sustainability, and leadership development for individuals working in health care settings.
Develop essential leadership skills with core principles, practical frameworks, and guidance in self-assessment, communication, and team-building for health care leaders.
Learn how U.S. health care payment works, from Medicare and Medicaid to alternative payment models and private equity, so you can lead palliative care and geriatrics programs that deliver quality care while remaining financially sustainable.
Develop practical skills in systems thinking, financial management, and change navigation to build resilient, high-impact palliative care and geriatrics programs.
Pediatric palliative care depends on complex federal and state policies related to reimbursement, workforce training, concurrent care, and care delivery, making advocacy a critical component of expanding access and improving outcomes.
Explore recent federal palliative care initiatives, learn about opportunities for federal action, and access guidance on policy implementation.
Use this toolkit to learn the issues and opportunities, explore recent state initiatives, and access guidance on implementation.
Free, centralized online forum for people who are interested in advancing palliative care at the state-and local levels.
The Pediatric Palliative Care Coalition (PPCC) partner coalitions are working together as one united voice to achieve greater impact for children and families.
Free, state-specific infographics and Medicaid contacts to help you advocate for pediatric palliative care designed to assist you in having a conversation with your policymakers. Produced by the Pediatric End-of-Life Care Research program at the University of Tennessee, Knoxville.
Director and Founder
Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital
Fac…
Executive Vice President, Policy and Programs
National Patient Advocate Foundation
Partner
Spragens & Gualtieri-Reed
Senior Nursing Adviser
Center to Advance Palliative Care
Nurse Practitioner and Director of Clinical Operations for the Pediatric Advanced Care Team (PACT) …
Project Manager, Education
