Pediatric Palliative Care Delivery
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 to program stakeholders.
Catalog of resources, tools and training to promote pediatric palliative care innovation and growth.
Make the case for a pediatric palliative care program.
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.
Testimonials from children's hospital leaders about why they have invested in palliative care. Originally delivered at the 2018 Annual Assembly.
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) offer hospitals two days of in-person, customized operational training and one year of mentoring.
Program Financing
Tools for business planning, writing a program budget, and billing for palliative care services.
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.
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.
Assess funding sources and program expenses.
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.
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.
Guidelines from the American Academy of Pediatrics, 2013.
Recognizes palliative care programs in TJC-accredited hospitals that demonstrate exceptional quality.
National accreditation standards for cancer care, requiring provision of palliative care services, navigation programs, and psychosocial distress screening.
15 evidence- and consensus-based standards for pediatric psychosocial oncology care. Published in 2015.
Program Design
Design a high-quality, sustainable service that is responsive to patient and family needs and adheres to quality standards.
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.
Framework for pediatric palliative care program design. Center to Advance Palliative Care, 2016.
Common service features to consider when designing a pediatric program.
Factors affecting design, patient volume, and staffing for a pediatric palliative care program.
Estimate patient volume and staffing needs. Center to Advance Palliative Care, updated October 2016.
Identify gaps in program capacity and potential community partnerships that will benefit patients and families.
Watch this Webinar, Palliative Care Medical Home: Lessons from a Pediatric Palliative Care Practice Serving as a Medical Home for Children with Complex Chronic Conditions.
Clinical Tools
Resources for care delivery for the pediatric palliative care team.
Online conversations on best practices in pediatric palliative care.
General palliative care referral criteria for children with serious illness, and for specific diseases including cancer and pulmonary, genetic, neurologic, metabolic, and other diagnoses.
Used with patients and families as a discussion guide for care planning. Shared by Seattle Children’s Hospital, 2002.
Booklet written in everyday language that helps children express how they want to be cared for if they have a serious illness.
Sample patient care policy and procedure from the Children's Health System.
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.
Program Staffing
Make decisions about staffing mix based on site of care, patient populations, type of organization, and clinical model.
Competencies for pediatric palliative care MD/PAs, APRNs, RNs, and social workers.
Service delivery and staffing models for pediatric palliative care programs.
Solutions for providing access to palliative care within small organizations.
Estimate FTEs needed for your program over time.
Staff Education
Online and in-person clinical training resources for the pediatric palliative care team.
Co-developed by CAPC and the Courageous Parents Network, this American Academy of Pediatrics course provides 5.0 MOC Part 2 points and 25.0 MOC Part 4 points. The course teaches pediatricians from any specialty how to engage in discussions that facilitate open, honest, and compassionate care for seriously ill children and their families.
A comprehensive adaptation of the EPEC curriculum designed to address the needs of children and their families.
These videos are designed for medical students on their core pediatrics rotation and include topics from the newborn nursery, inpatient, and outpatient domains.
A curriculum to help pediatric clinicians reflect on grief and loss, communicate with children and their families, and manage emotions after challenging patient care experiences.
Job Descriptions
Sample job descriptions for pediatric palliative care teams that can be modified to meet your hiring needs.
Shared by University of California San Francisco.
Shared by University of California San Francisco.
Shared by University of California San Francisco.
Shared by University of California San Francisco.
Shared by University of California San Francisco.
Program Marketing
Information and sample brochures for marketing services to patients, families, and referrers.
Program information for families. Akron Children's Hospital Haslinger Family Pediatric Palliative Care Center.
Program information for families. University of Minnesota Masonic Children's Hospital and Fairview Home Care and Hospice.
Information for families and referrers. Shared by Akron Children's Hospital Haslinger Family Pediatric Palliative Care Center.
Available in English and Spanish.
Printable overview of pediatric palliative care with FAQs for families and referrers.
Program Measurement
Measure program performance and demonstrate impact to stakeholders.
Commonly used metrics and measurement strategies for pediatric teams.
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.
Sample survey from the Pain and Palliative Care Program, Children’s Hospitals and Clinics of Minnesota.
Sample survey from the Pain and Palliative Care Program Children’s, Hospitals and Clinics of Minnesota.
Sample survey from the Pain and Palliative Care Program, Children’s Hospitals and Clinics of Minnesota.
Sample survey from Akron Children's Hospital.
Watch this CAPC on-demand webinar, Evidence as a Tactic to Advance Pediatric Palliative Care. Find more palliative care webinars at capc.org
Resources for Patients and Families
Online communities and information for families of people living with serious illness, and support for bereaved parents.
Pediatric palliative care brochure for patients and families.
Spanish-language translation of an informational brochure for patients and families.
Printable overview of pediatric palliative care with FAQs for families and referrers.
Provides information on palliative care for people facing serious illness, including resources, FAQa, and a program directory.
4"x9" double-sided card from the National Institute of Nursing Research explaining different types of family support.
Empowering parents and families of children living with serious illness.
A safety net for parents of children with serious illnesses.
Resources for caregivers.
Online community for anyone who experiences the death of a baby.
Support for families after the loss of a child.
Resources to help families have difficult conversations about serious illness with children.
Printable overview of pediatric palliative care with FAQs for families and referrers.
Faculty
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Diane E. Meier, MD, FACP, FAAHPM
Founder, Director Emerita and Strategic Medical Advisor, Center to Advance Palliative Care
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Sarah Friebert, MD, FAAP, FAAHPM
Director and Founder
Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital
Fac… -
Rebecca Kirch, JD
Executive Vice President, Healthcare Quality and Value
National Patient Advocate Foundation
