The Landscape of Hospice Care for Children in a Midwestern State

Background: Although limitations in access to pediatric hospice care have been previously documented, factors have not been directly assessed at the level of individual agencies. This study seeks to better define the current state of pediatric hospice care in a midwestern state, Indiana, and describe the challenges that limit the quality and availability of care. Methods: We used hospice referrals originating from the two pediatric hospitals in the state, surveys of hospice agencies operating within the state, and case descriptions to demonstrate gaps in service, barriers, and requested support. Results: The most common barriers to care include a lack of pediatric-trained personnel or education, discomfort, low demand, and limited access to materials/equipment. Newborns (0–4 weeks) were underrepresented in referrals and in agencies that would accept infants. Rural regions are uniquely challenged with fewer hospice agencies providing services while receiving less-frequent pediatric hospice referrals, resulting in less experienced care. Conclusion: An opportunity for improvement identified was on-demand pediatric hospice education materials to address hospice provider workflow and infrequency of pediatric patients.