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Task force urges pediatric hospice program, pilot funding after families report lack of in‑home options
Summary
A state working group recommended developing a pediatric hospice and palliative care program after testimony from families and clinicians about gaps in in‑home end‑of‑life services for children. The panel recommended a center of excellence for nurse training and a statewide coordinated pilot to expand home hospice availability.
HARTFORD — Parents, pediatric specialists and hospice leaders told the Public Health Committee that Connecticut lacks a coordinated pediatric hospice program to support children with life‑threatening illnesses and their families at home.
“I can guarantee you that over the next year, someone in this room will personally experience or have a loved one experience the indignity, discomfort, and safety risks associated with hallway care and hospital boarding,” Dr. Craig Moore, an emergency physician and working group member, told the committee — urging the assembly to act on recommendations to expand hospice and palliative options for children.
Nut graf: The committee heard testimony from hospital clinicians and parents that children eligible for hospice care routinely die in hospitals because home hospice services tailored to pediatric needs are uneven or unavailable. The task force recommended piloting a statewide pediatric hospice infrastructure, a center of excellence to train nurses in pediatric hospice, and improved family outreach and referrals.
Parents told legislators about the difficulty of securing hospice services during their child’s terminal illness. “When the time came several months later, I was told they could no longer help us,” said parent Toni Ann Turello, recounting her family’s experience finding in‑home hospice care for her son Michael. “We were devastated and lost.”
Task force co‑chairs and providers recommended phased approaches that begin with pilot regions, a board to coordinate services, workforce training investments, and sustained funding to support hospice nurses trained in pediatric care. Regional Hospice CEO Tony Marchon asked for a training center and enhanced information for physicians so that concurrent care and hospice options are routinely discussed early in a child’s illness.
Care providers said adult hospice agencies often lack pediatric expertise and that families need a central coordinator to arrange skilled nursing, supplies and bereavement supports. Testimony urged the committee to prioritize in‑home capabilities so families can keep children at home when that is their wish.
What’s next: The working group will continue work and recommended additional research on service models from other states; the committee said it would consider pilot funding and scope language this session.
Ending: Lawmakers said pediatric hospice is an urgent gap in the state’s safety net and pledged to keep the issue on the legislative agenda, starting with pilot funding and training for pediatric hospice nurses.
