Challenges Facing Pediatric Hospice and Palliative Care Providers
Low reimbursement rates and limited referral volumes are impacting pediatric hospice and palliative care providers, as revealed in the recent Pediatric Facts and Figures report by the National Alliance for Care at Home and the Research Institute for Home Care. These factors hinder their ability to adequately support patients and families.
The report exposes a lack of comprehensive data on home-based pediatric palliative and hospice care, according to Jennifer Sheets, CEO of the Alliance. It offers a thorough analysis of provider characteristics, patient demographics, geographical distribution of resources, access to services, reimbursement structures, and common challenges in the sector.
Jennifer Sheets emphasized the report's significance, stating, “The 2025 Pediatric Facts and Figures report gives our community a clearer picture of who is being served, where gaps remain, and what providers need to deliver truly patient- and family-centered care during some of life’s most difficult moments.” Limited data on pediatric care at home remains a concern.
The report, which draws on insights from nearly 300 providers surveyed between May and August 2024, emphasizes concurrent care delivery. Unlike adult hospice care, pediatric hospice can be provided alongside curative or life-sustaining treatments, a model supported by 64% of surveyed providers who offer concurrent care.
High costs have historically hindered the broader adoption of pediatric care, especially for children with complex medical needs. While Medicaid and the Children’s Health Insurance Program (CHIP) provide federal and state reimbursement, private insurers are not required to cover concurrent care, adding to financial obstacles.
The report highlights that approximately 50% of surveyed organizations were either unaware of or lacked a definition for concurrent care. Common barriers include regulatory complexity, high costs, low referral numbers, and inadequate state policies. Challenges also stem from provider coordination difficulties, staffing issues, and prognostic uncertainties, with nearly a third citing costs as a primary hurdle.
Children with severe illnesses contribute significantly to U.S. healthcare expenditures, with average costs reaching $82,000 annually per child, according to the report. Key findings indicate the top barriers as a lack of trained pediatric professionals, low referral rates, and reimbursement challenges. Enhancements in services focus on increased referrals and improved Medicaid reimbursement. The report underscores the need for increased investments in staffing, education, funding, and systemic support to reduce current obstacles.