The report, “Facts and Figures: Pediatric Palliative and Hospice Care in America,” 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.
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.