The State of Pediatric Concurrent Hospice Care in the United States

Abstract

The Patient Protection and Affordable Care Act (ACA) required all state Medicaid programs to pay for both curative and hospice services for children and adolescents. The purpose of this Special Article report is to quantify and describe the use of concurrent care for children, including a depiction of the barriers and benefits according to community-based hospice organizations in the United States. A total of 295 hospice organizations from 50 states and Washington, DC responded to the National Alliance for Care at Home call for engagement. Almost three-quarters of responding organizations admit children under concurrent care. An average of 38% (median 10%) of admitted pediatric patients are cared for under concurrent care. There was a notable lack of uptake of diverse reimbursement models relevant to concurrent care. Definitions of concurrent care focused on location of care and access to ongoing treatments without defining services. Responses tended toward an emphasis on regulatory/compliance language rather than goals of care or partnership focus. Challenges and barriers to concurrent care were quantitatively and qualitatively described as confusion, complexities, lack of consistency, cumbersomeness, and poor cross-partner communication. Policy and reimbursement model clarification is warranted to improve the potential benefits of this coverage for children and their families. As the ACA is currently at risk of discontinuation and Medicaid is at risk of decreased funding, the pediatric community should leverage advocacy for improved concurrent care coverage approaches that are clear, consistent, and compassionately attuned to the needs of children and their families.