The Rising Tide of Pediatric Hospice, Palliative Care

Though seniors receive most of the hospice care in the United States, a rising number of hospice and palliative care providers are focusing more of their attention on a very different patient population: children with serious or terminal illness.

More than 47% of hospice patients in 2017 were older than 85, according to the National Hospice & Palliative Care Organization (NHPCO), and only 5.1% were younger than 65. Current data on pediatric hospice utilization are scarce; nevertheless providers are recognizing that many seriously ill children as well as adults have a need to receive palliative or hospice care in their homes.

Kentucky-based hospice and palliative care provider Bluegrass Care Navigators recently acknowledged the one-year anniversary of the founding of its dedicated pediatric palliative care program, Bright Path, which has served 30 families since June 2019. The program offers specialized medical care for infants, children, adolescents, and young adults who are living with a serious illness.

“Bright Path is comprehensive palliative care for the whole family, in their own home,” said Todd Cote, M.D., Bluegrass Care Navigators’ chief medical officer. “By bringing symptom-based care into the home, our hope is to decrease a family’s stress about their medical needs and improve the quality of their daily activities together.”

Earlier this year Connecticut-based Regional Hospice began constructing its North Star inpatient wing, which is dedicated to serving pediatric patients.

The NHPCO recently highlighted the work of Hospice and Palliative Care Buffalo in New York state for its work in pediatric palliative care, in particular the care received by 21-month-old Nathan Pitillo through the hospice’s Essential Care for Children program. Pitillo was diagnosed with microcephaly and lissencephaly, a rare neurological condition.

“Hospice and Palliative Care Buffalo provides pediatric care that is tailored to the unique needs of its pediatric patients,” NHPCO President and CEO Edo Banach said. “Pediatric patients are unique and may require a specialized type of care different from the care provided to the adult patient population. Hospice and Palliative Care Buffalo’s supportive care extends to the parents and siblings of the patient, who are often struggling emotionally and coping with a child who is seriously ill.”

In April, the National Coalition for Hospice and Palliative Care assembled a new Pediatric Palliative Care Task Force with a mission to improve access to pediatric services nationwide and help ensure coordinated field strategies among the group’s members.

The task force is designed to build upon the work of the Pediatric Palliative Care Action Initiative, a Center to Advance Palliative Care program that was launched last year.

It stands to reason that more families with seriously ill children would gravitate towards receiving community-based palliative care or hospice, when appropriate, as the overall health care system gradually moves towards providing more care in the home rather than the institutional setting. 

“The decline in deaths occurring in hospitals, combined with the rise in deaths occurring at home, has resulted in a significant increase in the proportion of all pediatric [complex chronic condition]-related deaths occurring at home,” research published in 2015 concluded. “This increase may be due to a desire to have home be the place of death or to inadvertent deaths occurring to children who are medically fragile as a result of illness or dependence upon medical technology. Either way, this shift in location of death underscores the importance of having sufficient community-based capacity to provide care in the home for pediatric patients.”