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

Demonstrate the value of your pediatric palliative care service to program stakeholders.

Pediatric Palliative Care Field Guide

Catalog of resources, tools and training to promote pediatric palliative care innovation and growth.

Value Proposition: Making the Case for Pediatric Palliative Care

Make the case for a pediatric palliative care program.

Putting Pediatric Palliative Care in Prime Time: Benefits, Value Proposition, Messaging, and Resources

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.

Making the Case for the C-Suite

Testimonials from children's hospital leaders about why they have invested in palliative care. Originally delivered at the 2018 Annual Assembly.

Can You 'Make the Case' for Pediatric Palliative Care?

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™

Palliative Care Leadership Centers (PCLC) offer hospitals two days of in-person, customized operational training and one year of mentoring.

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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The principles of business planning and program design.

The Financial Case: Demonstrating Value in a Pediatric Palliative Care Program
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How to make a sustainable business case.

Aligning Funding Sources and Program Expenses
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Assess funding sources and program expenses.

Financing a Palliative Care Program

Toolkit for building a business plan and budget, forming financial partnerships, and operating the program efficiently.

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

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.

AAP Commitments, Guidelines, and Recommendations for Pediatric Palliative Care and Hospice

Guidelines from the American Academy of Pediatrics, 2013.

The Joint Commission (TJC) Advanced Certification for Palliative Care

Recognizes palliative care programs in TJC-accredited hospitals that demonstrate exceptional quality.

American College of Surgeons Commission on Cancer (CoC) Cancer Program Standards: Ensuring Patient-Centered Care (2016 Edition)

CoC accreditation requirement for pediatric cancer programs to provide palliative care services either onsite or by referral.

Pediatric Psychosocial Oncology Care Standards (2015)

15 evidence- and consensus-based standards for pediatric psychosocial oncology care. Published in 2015.

Design a high-quality, sustainable service that is responsive to patient and family needs and adheres to quality standards.

Pediatric Palliative 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.

Pediatric Palliative Program Design Overview
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Framework for pediatric palliative care program design. Center to Advance Palliative Care, 2016.

Service Features Checklist
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Common service features to consider when designing a pediatric program.

Hospital Program Design Variables
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Factors affecting design, patient volume, and staffing for a pediatric palliative care program.

Patient Volume Estimator Worksheet
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Estimate patient volume and staffing needs. Center to Advance Palliative Care, updated October 2016.

Community Partnerships Overview
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Identify gaps in program capacity and potential community partnerships that will benefit patients and families.

Palliative Care Medical Home: Lessons from a Pediatric Palliative Care Practice Serving as a Medical Home for Children with Complex Chronic Conditions

Resources for care delivery for the pediatric palliative care team.

American Academy of Pediatrics (AAP) Section on Hospice and Palliative Medicine

Online conversations on best practices in pediatric palliative care.

Pediatric Palliative Care Referral Criteria
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General referral criteria for children with serious illness, and for specific diseases including cancer and pulmonary, genetic, neurologic, metabolic, and other diagnoses. Center to Advance Palliative Care, updated 2016.

The Decision-Making Tool (Information for Families)
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Used with patients and families as a discussion guide for care planning. Shared by Seattle Children’s Hospital, 2002.

Pediatric My Wishes

Booklet written in everyday language that helps children express how they want to be cared for if they have a serious illness.

Pediatric Pain Assessment and Management
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Sample patient care policy and procedure. Children's Health System, 2001.

Community Partnerships: Transition to Adult Care
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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.

NIH Palliative Care: Conversations Matter®

Evidence-based materials for starting and continuing conversations about pediatric palliative care with patients and their families.

Make decisions about staffing mix based on site of care, patient populations, type of organization, and clinical model.

Core Competencies for Pediatric Palliative Care Teams
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Competencies for pediatric palliative care MD/PAs, APRNs, RNs, and social workers.

Models and Staffing Overview
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Service delivery and staffing models for pediatric palliative care programs.

Models and Staffing Overview: Small Hospitals and Community Settings
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Solutions for providing access to palliative care within small organizations.

Program Design Staffing Worksheet
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Estimate FTEs needed for your program over time.

Online and in-person clinical training resources for the pediatric palliative care team.

EPEC - Pediatrics

A comprehensive adaptation of the EPEC curriculum designed to address the needs of children and their families.

Pediatric Pain Treatment and Opioid Prescribing

Course on treating both acute and chronic pain in children.

Promoting Excellence in End-of-Life Care: Tools

Decision-making tools, pain assessment forms, surveys for pediatric providers and families, and more.

Online Curriculum: Resilience in the Face of Grief and Loss

Understand and communicate about grief and loss for children and their families, and self-care for clinicians. From the American Academy of Pediatrics (AAP) Section on Hospice and Palliative Medicine.

NIH Palliative Care: Conversations Matter®

Evidence-based materials for starting and continuing conversations about pediatric palliative care with patients and their families.

Sample job descriptions for pediatric palliative care teams that can be modified to meet your hiring needs.

Program Director (Pediatrics)
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Shared by University of California San Francisco.

Physician (Pediatrics)
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Advance Practice Nurse (Pediatrics)
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Shared by University of California San Francisco.

RN (Pediatrics)
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Social Worker (Pediatrics)
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Shared by University of California San Francisco.

Registered Case Manager (Pediatrics)
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Child Life Specialist (Pediatrics)
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Shared by University of California San Francisco.

Chaplain (Pediatrics)
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Case Manager (Pediatrics)
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Consulting Physician (Pediatrics)
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Shared by University of California San Francisco.

Bereavement Coordinator (Pediatrics)
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Information and sample brochures for marketing services to patients, families, and referrers.

Pediatric Palliative Care Highlight: Interview with Dr. Justin Baker of St. Jude Children’s Research Hospital
Sample Pediatric Palliative Care Program Brochure
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Program information for families. Akron Children's Hospital Haslinger Family Pediatric Palliative Care Center.

Sample Pediatric Advanced Complex Care Team Handout
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Program information for families. University of Minnesota Masonic Children's Hospital and Fairview Home Care and Hospice.

Sample Program Services Description Handout
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Information for families and referrers. Shared by Akron Children's Hospital Haslinger Family Pediatric Palliative Care Center.

NHPCO Brochures for Families

Available in English and Spanish.

Pediatric Palliative Care At-a-Glance Fact Sheet

Printable overview of pediatric palliative care with FAQs for families and referrers.

Measure program performance and demonstrate impact to stakeholders.

Metrics and Measurement Overview
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Commonly used metrics and measurement strategies for pediatric teams.

Measurement Best Practices

Use this toolkit to select program measures that demonstrate value to stakeholders and support quality care delivery. Overcome common measurement obstacles and synthesize program data.

Pediatric Satisfaction Survey for a Current Patient
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Sample survey from the Pain and Palliative Care Program, Children’s Hospitals and Clinics of Minnesota.

Pediatric Satisfaction Survey for a Bereaved Parent
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Sample survey from the Pain and Palliative Care Program Children’s, Hospitals and Clinics of Minnesota.

Pediatric Satisfaction Survey for a Discharged Patient
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Sample survey from the Pain and Palliative Care Program, Children’s Hospitals and Clinics of Minnesota.

Referring Clinician Satisfaction Survey for the Pediatric Palliative Care Program
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Sample survey from Akron Children's Hospital.

Evidence as a Tactic to Advance Pediatric Palliative Care

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)

Pediatric palliative care brochure for patients and families.

Palliative Care for Children: Support for the Whole Family When Your Child Is Living with a Serious Illness (Spanish)

Spanish-language translation of an informational brochure for patients and families.

Pediatric Palliative Care At-a-Glance Fact Sheet

Printable overview of pediatric palliative care with FAQs for families and referrers.

Get Palliative Care: Pediatric Palliative Care

Provides information on palliative care for people facing serious illness, including resources, FAQa, and a program directory.

Finding Family Support Resource Card

4"x9" double-sided card from the National Institute of Nursing Research explaining different types of family support.

Courageous Parents Network

Empowering parents and families of children living with serious illness.

Partnership for Parents

A safety net for parents of children with serious illnesses.

Perinatal Hospice & Palliative Care

Resources for caregivers.

Share: Pregnancy and Infant Loss Support, Inc

Online community for anyone who experiences the death of a baby.

The Compassionate Friends

Support for families after the loss of a child.

The Conversation Project: Pediatric Starter Kit

Resources to help families have difficult conversations about serious illness with children.

Pediatric Palliative Care At-a-Glance Fact Sheet

Printable overview of pediatric palliative care with FAQs for families and referrers.