The Pediatric Hospice Working Group Meeting held on February 25, 2025, focused on critical issues surrounding pediatric hospice care in Connecticut, highlighted by a poignant account from a mother who lost her son in 2021. The mother shared her experience of navigating the healthcare system, emphasizing the barriers she faced in accessing hospice services for her son, who had severe disabilities due to a birth injury.

During the meeting, the mother recounted her son’s tragic journey, detailing how he was only able to receive hospice care for three days before his death. She expressed her frustration that no healthcare providers had informed her about the availability of pediatric hospice services, nor had they initiated conversations about end-of-life care options. Despite her son’s complex medical needs, she felt that clinicians were reluctant to discuss hospice care until it was too late.

The mother also mentioned that she was misinformed by another hospice provider, which led her to believe that pediatric care was not available. It was only through the intervention of a nun who recognized the services offered by regional hospice that she was able to secure care for her son shortly before his passing.

This testimony underscored the urgent need for better communication and education regarding pediatric hospice options among healthcare providers. The meeting participants acknowledged the importance of raising awareness about available services and ensuring that families are informed about their options well in advance of critical situations.

The discussion highlighted the broader implications for pediatric hospice care in Connecticut, with a call to action for improved training for clinicians and better outreach to families. The working group aims to address these gaps to prevent similar experiences for other families in the future.