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Pediatric hospice work group outlines program redesign; proposed state bill would adopt its recommendations
Summary
Work group co-chair Toni Anne said members have identified barriers to pediatric palliative and hospice care and are drafting program levels and funding options; a proposed state bill would adopt the group's recommendations but final language is not yet available.
Toni Anne, co-chair of the pediatric hospice work group, said the panel has finished a wide-ranging review of barriers to pediatric palliative and hospice care in Connecticut and is developing a redesigned program with defined levels of care and funding options.
The group is discussing how to preserve families' existing shift nursing and home-care supports while also offering hospice services, and whether routine levels of hospice care can be provided in hospitals. “Why does it have to be a 6-month criteria? Why did they lose their shift nursing? Why can't we do routine level of care in a hospital?” Toni Anne said. She described the work as rebuilding how the program should look to increase access for children.
The Palliative Care Advisory Council chair, Karen, and other members said the work group has compared models in Massachusetts, California and Washington to inform Connecticut's approach. Wendy, representing a Yale Law School palliative care initiative, said her team is drafting a Connecticut-focused white paper and offered to share a working draft; she also offered to connect the work group with Stacy Sinclair, director of policy at the Center to Advance Palliative Care, for a possible presentation on Connecticut's palliative care scorecard.
Wendy said the Yale Law School team aims to circulate a working draft of its white paper by the end of the month to inform the council's timeline and potential testimony during the legislative session. Toni Anne said the group is trying to make palliative and hospice services easier to access while maintaining families' current supports and transitions to end-of-life hospice when appropriate.
Separately, meeting organizers said there is proposed legislation that would adopt the pediatric hospice work group's recommendations. Karen said the bill is still in the proposed phase and that the council has not seen final bill language.
Members discussed specific barriers the work group identified: loss of home nursing when families enroll in hospice, reluctance by clinicians and families to use hospice language even when concurrent care is available, and limits on providing routine hospice-level services inside hospitals. Toni Anne said those operational issues are central to the group's redesign work.
The council did not take formal action on the proposed legislation during this meeting. Instead, members agreed to continue coordination with academic partners and to accept materials from Yale Law School and CAPC to inform the work group's next steps.
