Pediatric Palliative Care Action Initiative

Pediatric palliative care has grown rapidly over the past decade. Today, more children and infants living with serious illness have access to palliative care than ever before, and pediatric palliative care is increasingly making its mark as a key component of quality care delivery.

However, we know that our sickest kids still routinely lack appropriate access to high-quality palliative care.

Leveraging the growth and maturation of the field, in February 2019 a steering committee of pediatric palliative care leaders representing a variety of disciplines, organizations, and areas of focus convened to identify strategic solutions to major access barriers nationally and discuss the impact and feasibility of potential interventions to grow and strengthen the field.

To engage and get feedback from a broad group of interdisciplinary pediatric palliative care professionals, the steering committee conducted a national survey to help rank potential action items. The priority actions identified by CAPC's steering committee would require collaboration among the various stakeholders in the field, and among the organizations that already represent them.

Building upon this momentum, in April 2020 the National Coalition for Hospice and Palliative Care convened a new Pediatric Palliative Care Task Force, a national hub for coordination of these priority actions, communication in the field, and strategic fundraising. By leveraging the work and platforms of the existing Coalition member organizations, the Task Force aims to improve national alignment and impact to ensure access to high-quality palliative care for the children and families who need it.

In response to one of the priority actions—the development of palliative care education for nonpalliative care pediatricians—CAPC collaborated with the the American Academy of Pediatrics (AAP) and Courageous Parents Network (CPN) to create an online course, Talking About Serious Illness. This course, available through EQIPP on the AAP website, will help facilitate open and honest conversations with parents or other family members of children living with a serious illness.

CAPC Steering Committee Co-Chairs:

Sarah Friebert, MD
Director, Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital
Faculty, Palliative Care Leadership Centers™

Diane E. Meier, MD, FACP, FAAHPM
Director, Center to Advance Palliative Care

Executive Advisors:

Joanne Wolfe, MD, MPH
Director, Pediatric Palliative Care, Boston Children's Hospital
Division Chief, Pediatric Palliative Care Service, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute

Chris Feudtner, MD, PhD, MPH
Director of Research, Pediatric Advanced Care Team, Children's Hospital of Philadelphia

Click here for a full listing of Steering Committee Members.

CAPC's steering committee and field survey were made possible thanks to the generous support of funders, Trudy Elbaum Gottesman and Bob Gottesman and The Cameron and Hayden Lord Foundation, with additional support from the Louis H. Gross Foundation and the U.S. Cancer Pain Relief Committee.