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Report on Pediatric Palliative Hospice Care

For Immediate Release:
July 30, 2015

New Pediatric Resource Helps Focus Attention on Children’s Unmet Needs

Report from NHPCO on Palliative and Hospice Care for Young People

(Alexandria, Va) – A new report released by the National Hospice and Palliative Care Organization provides insight into the care needs of young people who might benefit from pediatric palliative/hospice care.  These are children with chronic, complex and/or life-limiting conditions.

The 11-page report, “NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America,” can help hospice and palliative care providers—as well as policymakers, funders and the media—to better understand both the current challenges and the unmet needs of children and their families across the country.

Pediatric palliative/hospice care provides children and their families with high quality, compassionate, and consistent care delivered through the collaborative efforts of an interdisciplinary team. PP/HC may be provided along with concurrent disease-modifying therapy and can transition to be the main focus of care when disease-modifying therapy is no longer effective and comfort becomes a priority.

Due to the complexity of care involved, children with life-threatening conditions and complex chronic conditions are likely to benefit from PP/HC services. The U.S. Department of Health and Human Services reports that the number of children with special health care needs in increasing. Overall, 15.1 percent of U.S. children ages 0 – 17 (11.2 million children) are in this category.

Traditionally, three-quarters of pediatric deaths have been thought of as PP/HC appropriate. (Children aged 0 – 19 years accounted for 1.6 percent of all deaths in the U.S. in 2013.) However, as PP/HC services have grown, they are better able to provide short term services, including grief and bereavement support, to the cohort of patients and families affected by trauma or sudden serious illness or death.

Payment and reimbursement for PP/HC care remains a complex issue. Passage of the Patient Protection and Affordable Care Act in 2010 carries great potential for positive change allowing for concurrent care for children.

A recent survey of children’s hospitals in the U.S. found that 69 percent have a palliative care team. Nearly 30 percent of the programs offer home visit services. An early survey conducted by NHPCO found that 78 percent of responding member hospices reported that they serve pediatric patients and 36.6 percent have a formal pediatric program in place.

The report was written by Sarah Friebert, MD, director of the Haslinger Family Pediatric Palliative Care Center at Akron Children’s Hospital, and Conrad Williams, MD, medical director, palliative care, Department of Pediatrics at Medical University of South Carolina.

NHPCO is committed to improving access to hospice and palliative care for children and their families - both nationally and internationally. ChiPPS (Children’s Project on Palliative/Hospice Services) serves as NHPCO’s pediatric advisory council.

Download the report and access additional resources on pediatric hospice and palliative care at www.nhpco.org/pediatrics.


Anita Brikman
NHPCO Senior Vice President, Strategic Communications
Ph: 703-837-3154

NHPCO is the oldest and largest nonprofit leadership organization representing hospice and palliative care programs and professionals in the United States. NHPCO’s mission is to lead and mobilize social change for improved care at the end of life.