Hospices and families seek to codify pediatric palliative care eligibility to age 22

Hospices, pediatric palliative care program managers and families asked the Joint Committee on Public Health to enshrine an eligibility age of 22 in statute for the state pediatric palliative care program, saying recent budget language extended services but the change should be permanent.

"Extending this eligibility to 22 would allow the program to better assist young adults and their families," said a representative of the Hospice and Palliative Care Federation of Massachusetts, summarizing Senate Bill 15-07. Speakers said the last four budgets included line-item language expanding services to age 22 but that codifying the change would prevent year-to-year uncertainty.

Program managers and families described the servicesmusic therapy, child life specialists, skilled nursing, and social workas vital for quality of life and continuity during prolonged medical courses. Margie Luna, Baystate Pediatric Palliative Care Program Manager, and others recounted cases in which patients lost access to services at age 18 and experienced care gaps. Jillian Allaire, a young adult with complex chronic conditions who had received pediatric palliative services, told the committee that having palliative care through age 22 would have helped her recovery after a transplant and during emotional transitions.

What happened next: committee members heard proponents and asked for the bill to be reported favorably; there was no committee vote taken at the hearing.

Ending: Sponsors and service providers urged codification of the expanded eligibility so programs and families have predictable continuity of care.