Charlie’s Way Toolkit: Perspectives from Bereaved Parents and Staff on Postmortem Care

Key Message : (1) To understand family perspectives on Charlie’s Way (pediatric morgue exception) versus conventional post-mortem care, (2) engage staff to identify barriers and facilitators to implementation, and (3) develop a toolkit to support adoption at other hospitals across the United States.

Abstract: Families whose children die in the hospital often experience distress when their child’s body is transported and stored in the morgue (1). To honor families’ grief, Charlie’s Way was established in 2012 to offer an alternative that allows families to accompany their child’s body directly to the funeral home vehicle. Early feedback from families suggests that Charlie’s Way provides solace and a sense of closure. However, the family experience and staff perspectives about its use have not been systematically explored. Our goal is to (1) understand family perspectives on Charlie’s Way versus conventional post-mortem care, (2) engage staff to identify barriers and facilitators to implementation, and (3) develop a toolkit to support adoption at other hospitals across the United States.

Using a qualitative, multi-stakeholder engaged design, we are conducting semi-structured interviews with a subset of bereaved families who have used Charlie’s Way (n=10/93), families that used conventional post-mortem care (n=10), and with staff (n=10) from nursing, providers and social work. Preliminary feedback from families that have chosen Charlie’s way show that they found it meaningful to leave the hospital with their child. Additionally, a family noted that “…from the time he was born he never got… to go outside. This gave him a chance to… have the sun shine on his face." Interview transcripts will be analyzed thematically to identify experiential, operational, and emotional themes. Insights will inform the development of a comprehensive Charlie’s Way Implementation Toolkit including policy templates, workflow guides, and educational resources to assist hospitals adopting the program.

Preliminary findings suggest that families value the dignity, privacy, and compassion embedded in Charlie’s Way, describing it as a meaningful final act of care. We believe this project demonstrates how human-centered innovations can transform end of life experiences for families and inform scalable models of compassionate care nationwide.

References: 1: Butler, A. E., Copnell, B., & Hall, H. (2019). When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents. Pediatr Crit Care Med, 20(9), e447-e451. https://doi.org/10.1097/PCC.0000000000002040