Pulse Check: Status Update on Pediatric Palliative and Hospice Community-Based Coverage

Abstract

Background: The pediatric literature describes reliance on community-based palliative and hospice organizations in extending the reach of care for children. Objective: To provide an updated post-pandemic snapshot of pediatric palliative and hospice services and staffing offered by community-based organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Alliance for Care at Home in the United States. Results: A total of 295 palliative and hospice organizations from 50 states and Washington, DC, responded. Half (49%) of organizations reported increasing the number of pediatric patients accepted into their care over the past five years. A total of 6% of responding programs newly started to accept pediatric patients between 2020 and the current survey completion. Programs are less likely to include perinatal (61%) patients compared to infants through young adults (94%). Trauma increased as a reason for pediatric enrollment. Nonmetro geographies are less likely to provide services for children. The pediatric palliative average annual census was 271, and the pediatric hospice average annual census was 74. The pediatric patient's average length of stay for palliative care was 154 days and for hospice was 96 days. Medicaid (47%) is the most common form of reimbursement. Lack of trained personnel, low referrals, and funding were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations, with the gap widening in nonmetro settings. Further research into training, staffing, and funding models may improve care reach.

Keywords: hospice care; palliative care; pediatric.