Pediatric Palliative Care Delivery

Last Reviewed: March 4, 2019

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.

Are you delivering pediatric palliative care? Submit your program data to the National Palliative Care Registry™ to receive longitudinal and comparative reports on program structure and operations. Participation in the Registry is free—CAPC membership is not required.

What’s in the Toolkit

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

Pediatric Palliative Care Field Guide

Last Updated: February 3, 2019

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

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Value Proposition: Making the Case for Pediatric Palliative Care

Last Updated: February 24, 2019

Make the case for a pediatric palliative care program.

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

Last Updated: February 3, 2019

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.

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Making the Case for the C-Suite

Last Updated: January 29, 2019

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

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

Last Updated: April 30, 2019

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'.

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Palliative Care Leadership Centers™

Last Updated: June 4, 2019

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

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Tools for business planning, writing a program budget, and billing for palliative care services.

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The Basics of Business Planning for Pediatric Palliative Care

Last Updated: February 3, 2019

The principles of business planning and program design.

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The Financial Case: Demonstrating Value in a Pediatric Palliative Care Program

Last Updated: February 3, 2019

How to make a sustainable business case.

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Aligning Funding Sources and Program Expenses

Last Updated: February 3, 2019

Assess funding sources and program expenses.

Funding a Palliative Care Program

Last Updated: March 4, 2019

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

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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

Last Updated: January 29, 2019

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.

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

Last Updated: February 3, 2019

Guidelines from the American Academy of Pediatrics, 2013.

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NHPCO's Pediatric Standards: A Key Step in Advancing Care for America's Children

Last Updated: February 3, 2019

NHPCO Newsline article on Pediatric Palliative Care Standards.

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The Joint Commission (TJC) Advanced Certification for Palliative Care

Last Updated: February 3, 2019

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

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

Last Updated: February 3, 2019

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

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Pediatric Psychosocial Oncology Care Standards (2015)

Last Updated: February 3, 2019

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

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

Pediatric Palliative Care

Ask questions related to strategic planning, program development, communication techniques, and managing operations for the pediatric palliative care program.

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Pediatric Palliative Program Design Overview

Last Updated: February 3, 2019

Framework for pediatric palliative care program design. Center to Advance Palliative Care, 2016.

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Service Features Checklist

Last Updated: February 3, 2019

Common service features to consider when designing a pediatric program.

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Hospital Program Design Variables

Last Updated: February 3, 2019

Factors affecting design, patient volume, and staffing for a pediatric palliative care program.

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Patient Volume Estimator Worksheet

Last Updated: February 3, 2019

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

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Community Partnerships Overview

Last Updated: February 3, 2019

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

Last Updated: February 11, 2019

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Resources for care delivery for the pediatric palliative care team.

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

Last Updated: February 3, 2019

Online conversations on best practices in pediatric palliative care.

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Pediatric Palliative Care Referral Criteria

Last Updated: February 3, 2019

Sample criteria from leading pediatric palliative care centers. Prepared for CAPC by Sarah Friebert, MD and Kaci Osenga, MD, Akron Children's Hospital, 2012.

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The Decision-Making Tool (Information for Families)

Last Updated: February 3, 2019

Used with patients and families as a discussion guide for care planning. Shared by Seattle Children’s Hospital, 2002.

Pediatric My Wishes

Last Updated: May 15, 2019

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

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Pediatric Pain Assessment and Management

Last Updated: February 3, 2019

Sample patient care policy and procedure. Children's Health System, 2001.

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Community Partnerships: Transition to Adult Care

Last Updated: February 3, 2019

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®

Last Updated: February 3, 2019

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

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

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Core Competencies for Pediatric Palliative Care Teams

Last Updated: February 3, 2019

Competencies for pediatric palliative care MD/PAs, APRNs, RNs, and social workers.

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Models and Staffing Overview

Last Updated: February 3, 2019

Service delivery and staffing models for pediatric palliative care programs.

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Models and Staffing Overview: Small Hospitals and Community Settings

Last Updated: February 3, 2019

Solutions for providing access to palliative care within small organizations.

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Program Design Staffing Worksheet

Last Updated: February 3, 2019

Estimate FTEs needed for your program over time.

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

Pediatric Fast Facts and Concepts

Last Updated: February 3, 2019

Concise, practical, peer-reviewed, and evidence-based summaries on key palliative care topics. An offering from the Palliative Care Network of Wisconsin.

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EPEC - Pediatrics

Last Updated: February 3, 2019

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

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Pediatric Pain Treatment and Opioid Prescribing

Last Updated: February 24, 2019

Course on treating both acute and chronic pain in children.

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Online Course: Pediatric Pain Management (Massachusetts General Hospital for Children)

Last Updated: February 3, 2019

Assess pain in patients in various stages of development, and select appropriate management strategies when treating headache and chronic abdominal pain.

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Online Course: Pediatric End of Life Issues (Massachusetts General Hospital for Children)

Last Updated: February 3, 2019

Defines the role of pediatric palliative care and discuss end-of-life issues with patients and their families.

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Promoting Excellence in End-of-Life Care: Tools

Last Updated: February 3, 2019

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

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Online Curriculum: Resilience in the Face of Grief and Loss

Last Updated: February 3, 2019

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.

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NIH Palliative Care: Conversations Matter®

Last Updated: February 3, 2019

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

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

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Program Director (Pediatrics)

Last Updated: March 4, 2019

Shared by University of California San Francisco.

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Physician (Pediatrics)

Last Updated: March 4, 2019

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RN (Pediatrics)

Last Updated: March 4, 2019

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Social Worker (Pediatrics)

Last Updated: March 4, 2019

Shared by University of California San Francisco.

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Registered Case Manager (Pediatrics)

Last Updated: March 4, 2019

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Child Life Specialist (Pediatrics)

Last Updated: March 4, 2019

Shared by University of California San Francisco.

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Chaplain (Pediatrics)

Last Updated: March 4, 2019

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Advanced Practice Nurse (Pediatrics)

Last Updated: March 4, 2019

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Case Manager (Pediatrics)

Last Updated: March 4, 2019

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Consulting Physician (Pediatrics)

Last Updated: March 4, 2019

Shared by University of California San Francisco.

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Bereavement Coordinator (Pediatrics)

Last Updated: March 4, 2019

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

Last Updated: March 4, 2019

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Sample Pediatric Palliative Care Program Brochure

Last Updated: February 3, 2019

Program information for families. Akron Children's Hospital Haslinger Family Pediatric Palliative Care Center.

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Sample Pediatric Advanced Complex Care Team Handout

Last Updated: February 3, 2019

Program information for families. University of Minnesota Masonic Children's Hospital and Fairview Home Care and Hospice.

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Sample Program Services Description Handout

Last Updated: February 3, 2019

Information for families and referrers. Shared by Akron Children's Hospital Haslinger Family Pediatric Palliative Care Center.

NHPCO Brochures for Families

Last Updated: February 3, 2019

Available in English and Spanish.

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Pediatric Palliative Care At-a-Glance Fact Sheet

Last Updated: May 15, 2019

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

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Measure program performance and demonstrate impact to stakeholders.

National Palliative Care Registry™

Last Updated: February 27, 2019

A publicly available national database of palliative care programs and operational metrics, free of charge to all palliative care programs. Submit program data to receive reporting and to track program growth and capacity over time. Compare your program to peers to help make the case for adequate staffing and program quality.

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Metrics and Measurement Overview

Last Updated: February 3, 2019

Commonly used metrics and measurement strategies for pediatric teams.

Measurement Best Practices

Last Updated: March 4, 2019

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.

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Pediatric Satisfaction Survey for a Current Patient

Last Updated: February 3, 2019

Sample survey from the Pain and Palliative Care Program, Children’s Hospitals and Clinics of Minnesota.

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Pediatric Satisfaction Survey for a Bereaved Parent

Last Updated: February 3, 2019

Sample survey from the Pain and Palliative Care Program Children’s, Hospitals and Clinics of Minnesota.

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Pediatric Satisfaction Survey for a Discharged Patient

Last Updated: February 3, 2019

Sample survey from the Pain and Palliative Care Program, Children’s Hospitals and Clinics of Minnesota.

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Referring Clinician Satisfaction Survey for the Pediatric Palliative Care Program

Last Updated: February 3, 2019

Sample survey from Akron Children's Hospital.

Evidence as a Tactic to Advance Pediatric Palliative Care

Last Updated: February 11, 2019

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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)

Last Updated: February 3, 2019

Pediatric palliative care brochure for patients and families.

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

Last Updated: February 3, 2019

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

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Pediatric Palliative Care At-a-Glance Fact Sheet

Last Updated: May 15, 2019

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

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Get Palliative Care: Pediatric Palliative Care

Last Updated: February 3, 2019

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

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Finding Family Support Resource Card

Last Updated: May 15, 2019

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

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Courageous Parents Network

Last Updated: February 3, 2019

Empowering parents and families of children living with serious illness.

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Partnership for Parents

Last Updated: February 3, 2019

A safety net for parents of children with serious illnesses.

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Perinatal Hospice & Palliative Care

Last Updated: February 3, 2019

Resources for caregivers.

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Share: Pregnancy and Infant Loss Support, Inc

Last Updated: February 3, 2019

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

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The Compassionate Friends

Last Updated: February 3, 2019

Support for families after the loss of a child.

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The Conversation Project: Pediatric Starter Kit

Last Updated: February 3, 2019

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

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Pediatric Palliative Care At-a-Glance Fact Sheet

Last Updated: May 15, 2019

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

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