Strengthening Bioethics in the Medicaid Benefit for Children at End of Life

The Affordable Care Act allowed children to access curative and hospice services concurrently. Medicaid benefits exist to expand services and cover costs during pediatric end-of-life care. However, these benefits are complicated to interpret, cumbersome to access, and inconsistent between states. This results in Medicaid benefits for children with life-shortening diagnoses being under-utilized with impact to families. This project will aim to generate the following deliverables: 1) modify an existing pediatric hospice toolkit for clinicians, hospice organizations, and policymakers with bioethics content and policy clarity; 2) develop a workshop on bioethics and pediatric hospice concurrent care; and 3) develop virtual trainings on implementing bioethics content into pediatric hospice policy.