Pediatric Palliative Care

Great strides have been made in improving care for adults with serious illness. Unfortunately, there is growing empirical evidence that the health care system has failed to meet the specialized needs of children.

Too many children undergo painful procedures and suffer from the symptoms of advancing disease without adequate relief. Families can feel abandoned and overwhelmed, and social supports to children and their families are woefully inadequate. Health care professionals themselves are often left without emotional support for the difficult work they do.

Pediatric palliative care (PPC) has experienced notable growth over the past decade, and providers no longer need to ‘go it alone’.  Download CAPC’s  Pediatric Palliative Care Field Guide for a catalog of field resources, tools and training to promote PPC innovation and growth.

Download the presentation:  Pediatric Palliative Care: Making The Case, which can be used to describe the value of pediatric palliative care for patients, families, and health care organizations, and to identify action steps that health professionals can take to support pediatric palliative care integration with disease-directed treatment across the care continuum. 

CAPC’s Palliative Care Leadership Centers™ provide customized training and technical assistance to teams who treat children and want to provide expert, high-quality care.  Learn more about CAPC’s pediatric Palliative Care Leadership Center™ here. Members, access CAPC’s toolkit for pediatric palliative care programs here.

Calling all pediatric palliative care programs! Responding to input from the PPC field, the National Palliative Care Registry™ is expanding to include a pediatric-focused module within the hospital survey. Starting on January 1, 2019, pediatric programs will be able to answer questions specific to their field and generate reports comparing themselves to other hospital pediatric palliative care programs. To ensure the accuracy and generalizability of Registry reporting on pediatric palliative care, we need all programs to participate. 

Registry participation presents an important opportunity for the field to inventory progress of PPC programs in children’s hospitals. This report explores data from the hospital-based pediatric programs participating in the Registry in 2014-2015.  

The Registry is free and open to all. Programs can learn more and enter data here.

Download this one-pager to share information with your colleagues about CAPC's pediatric palliative care resources.

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