The Pediatric Hospice Working Group convened on February 25, 2025, under the auspices of the Connecticut General Assembly's Public Health Committee. The meeting focused on developing a comprehensive framework for pediatric hospice care in the state, with discussions centering on the potential for a pilot program to gather data and best practices.

The meeting began with participants acknowledging the importance of collaboration among various healthcare providers, including those from Yale and Connecticut Children's Hospital. A key proposal was to initiate a pilot program aimed at collecting data to inform future decisions regarding pediatric hospice care. Participants emphasized the need to understand the successes and challenges of previous initiatives, such as the MOLST pilot, to guide the new framework.

Several members expressed concerns about the feasibility and timing of a pilot program, suggesting that it might delay necessary actions rather than expedite them. They argued that the group already had a clear understanding of the challenges and opportunities within pediatric hospice care and that a pilot might not yield new insights. Instead, they advocated for a more immediate approach that would involve listing challenges and opportunities to create a concrete plan.

Funding emerged as a critical topic, with participants agreeing that without adequate financial support, any proposed initiatives would struggle to gain traction. The group discussed the importance of compiling data on the number of children in Connecticut who could benefit from palliative and hospice care, as well as the average length of stay for patients. This data would be essential in making a compelling case for funding and support.

As the meeting progressed, participants agreed to collaborate on gathering data and refining their proposal. They planned to share their findings and insights to strengthen their case for a state-funded program. The meeting concluded with a commitment to continue working on the proposal and to follow up on data collection efforts, ensuring that all relevant information would be included in future discussions.

Overall, the meeting highlighted the urgency of addressing pediatric hospice care needs in Connecticut, the importance of collaboration among healthcare providers, and the necessity of securing funding to support proposed initiatives. The group plans to reconvene to further develop their proposal and share data insights.