During the recent Pediatric Hospice Working Group Meeting held on February 25, 2025, in Connecticut, significant concerns were raised regarding the lack of pediatric hospice services available to families in need. Participants highlighted a troubling gap in awareness and accessibility of these critical services, particularly for children facing life-limiting conditions.

One poignant testimony shared during the meeting illustrated the challenges families encounter. A parent recounted her struggle to find appropriate end-of-life care for her son, who was suffering from a severe infection. She expressed frustration over the lack of communication from clinicians, stating that it wasn't until her son became unresponsive that she realized the urgency of seeking hospice care. This experience underscored the pressing need for better outreach and education about pediatric hospice options.

The discussion also revealed that many families are unaware of bereavement services available to them. A participant noted that a grieving parent expressed regret for not knowing about these services sooner, emphasizing the need for improved communication between healthcare providers and families. This gap in knowledge can lead to missed opportunities for support during critical times.

To address these issues, the group explored potential solutions, including the establishment of a comprehensive program that would unify pediatric palliative and hospice care under a single umbrella. This initiative aims to enhance funding, marketing, and educational efforts to raise awareness about available services. Additionally, there was a call for integrating palliative care education into nursing curricula to ensure future healthcare professionals are well-equipped to support families facing these difficult circumstances.

The meeting concluded with a commitment to further develop these proposals and explore successful models from other states, such as Massachusetts, to improve pediatric hospice care in Connecticut. The discussions highlighted a collective determination to ensure that families receive the support they need during some of the most challenging times in their lives.