Access to palliative care is a critical quality indicator for organizations that care for children with serious illness. While the fundamentals of palliative care program design apply to both pediatric and adult programs, the resources in this toolkit address the unique needs of pediatric patients and their families and the implications for pediatric program leaders.
What’s in the Toolkit
Foundational Tools and Making the Case
Demonstrate the value of your pediatric palliative care service.
Pediatric Palliative Care Field Guide
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Catalog of resources, tools and training to promote pediatric palliative care innovation and growth.
Putting Pediatric Palliative Care in Prime Time: Benefits, Value Proposition, Messaging, and Resources
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Describe the value of pediatric palliative care for patients, families, and health care organizations. Identify action steps to support pediatric palliative care integration across the care continuum.
Center to Advance Palliative Care, 2017.
Can You 'Make the Case' for Pediatric Palliative Care?
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In this blog post, CAPC's pediatric program manager shares insights and advice from hospital leaders across the nation regarding the need for pediatric palliative care, and how to make the case. The consensus: pediatric palliative care is a 'must-have'.
Palliative Care Leadership Centers (PCLC) provide palliative care teams the skills and organizational abilities needed to develop and deliver the highest-quality, sustainable programs.
Tools for business planning, writing a program budget, and billing for palliative care services.
The Basics of Business Planning for Pediatric Palliative Care
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This slide deck defines the essential components of business planning for pediatric palliative care. It will help you articulate the value your program will offer and how your program’s service features influence your business plan.
The Financial Case: Demonstrating Value in a Pediatric Palliative Care Program
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This document covers the importance of a pediatric palliative care business case for sustainability. Considerations include estimating patient volume, funding assumptions, and financial modeling. A worksheet is included to explore how to match your institution’s financial goals with different value propositions.
Standards and Guidelines for Pediatric Palliative Care
National standards for pediatric palliative care serve as a roadmap for program design and an indicator of quality care.
National Consensus Project for Quality Palliative Care, 4th edition
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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 Palliative Care Practice Examples from the NCP Clinical Practice Guidelines, 4th Edition
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This chart highlights pediatric-specific practice examples drawn directly from each of the eight domains of the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care, 4th Edition. The examples reflect how interdisciplinary teams across diverse care settings can apply the guidelines to improve outcomes for seriously ill children and their families.
Optimal Resources for Cancer Care (2020 Standards)
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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.
Pediatric Psychosocial Oncology Care Standards (2015)
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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.
Design a high-quality, sustainable service that is responsive to patient and family needs and adheres to quality standards.
Innovative Initiatives in Pediatric Community-Based Palliative Care
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In this on-demand webinar, three pediatric palliative care programs share their innovative ideas for comprehensive, interprofessional, and sustainable community-based care.
In this Virtual Office Hour, ask questions related to strategic planning, program development, communication techniques, and managing operations for the pediatric palliative care program.
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.
Concepts of Community-Based Palliative Care Program Design 101, Section 7 Worksheet: Develop Community Partnerships
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Record the types of health and social service organizations your program might partner with to ensure the range of expertise and resources necessary to care for your program’s patients, and their caregivers.
Resources for care delivery for the pediatric palliative care team.
American Academy of Pediatrics (AAP) Section on Hospice and Palliative Medicine
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Member-only peer conversations on best practices in pediatric palliative care. Use to stay connected to the broader PPC clinical community and emerging standards.
General palliative care referral criteria for children with serious illness, and for specific diseases including cancer and pulmonary, genetic, neurologic, metabolic, and other diagnoses.
A booklet helping children express how they want to be cared for, in their own words. Share once a child is developmentally able to participate in their own care conversations.
Identify potential community care partners, analyze partnership opportunities, and design pathways for families transitioning to adult care in the community.
Center to Advance Palliative Care, 2010.
Online and in-person clinical training resources for the pediatric palliative care team.
EPEC - Pediatrics
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A full curriculum adaptation of EPEC for children and families. Use for in-depth, self-paced professional development across clinical, communication, and ethical domains.
These videos are designed for medical students on their core pediatrics rotation and include topics from the newborn nursery, inpatient, and outpatient domains.
American Academy of Pediatrics (AAP) Online Curriculum: Resilience in the Face of Grief and Loss
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Supports clinicians in processing grief and managing emotions after difficult patient experiences. Use yourself or your team after a hard case, or proactively as part of onboarding.
Use this toolkit to select program measures that demonstrate value and support quality care delivery. Overcome common measurement obstacles and synthesize program data.
Online communities and information for families of people living with serious illness, and support for bereaved parents.
Palliative Care for Children: Support for the Whole Family When Your Child Is Living with a Serious Illness (English)
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A brochure introducing pediatric palliative care to patients and families. Share at or shortly after diagnosis, to orient families to available support.
An online peer community for parents of children with serious illness. Share with a family newly navigating a PPC diagnosis who's looking for peer connection.
Resources for families navigating a life-limiting prenatal diagnosis. Share with caregivers facing perinatal loss to connect them with specialized support.
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