Connecticut working group, Yale Law researchers draft framework to rebuild pediatric palliative care ahead of March bill deadline

A Yale Law School researcher outlined a state-level framework to expand and reconfigure pediatric palliative and hospice care in Connecticut, and Sen. Anwar asked the working group to provide language that can be incorporated into a bill with a March 1 filing deadline.

"My name is Wendy Jiang," said Wendy Jiang, a member of the Yale Law School team working on a white paper. Jiang described a roughly 20‑page draft that identifies workforce shortages, confusion about terminology, stigma, payment barriers, licensing issues and gaps in neonatal and other pediatric services.

The recommendation from Sen. Anwar that the panel "give us the framework of what we're doing so that they can fill in the language into the bill" set the next step: the subgroup will present proposed language to the full coalition and to Anwar's office before March 1, while continuing work after the filing deadline to refine program details.

Why it matters: group members said Connecticut already ranks near the top nationally on general palliative-care measures but lacks consistent pediatric-specific programs and data. Without clearer definitions, participants warned, providers and regulators cannot reliably measure need, reimburse services or build a sustainable workforce.

Jiang summarized research-backed options the white paper is weighing: establishing clear statewide definitions for pediatric palliative versus specialty palliative care; building training pipelines and "train the trainer" programs to expand a generalist palliative workforce; broadening referral criteria so acutely ill children—not only those with long-term complex conditions—can access services; and exploring whether large hospice or palliative hospitals should have minimum pediatric capacity or incentives to provide pediatric services.

"One of the fundamental challenges in planning for pediatric care is inconsistent definition," Jiang said. She urged defining primary versus subspecialty palliative care so generalists can provide baseline services and subspecialists can focus on the most complex cases.

Participants discussed payment and clinical limitations that shape where children receive care. Several speakers noted Connecticut's current restrictions on home administration of some intravenous medications and the effect this has on families' ability to receive hospice care at home.

"One of the biggest limitations to providing hospice care at home currently in the state of Connecticut is the limitation of IV medications and the inability to provide pain management and symptom management other than oral currently for pediatric patients here," a participant said, describing a barrier that the group recommended include in the policy analysis.

Providers also reported operational progress: a survey effort and geographic map of licensed home‑care agencies is under way (the staff lead reported 14 preliminary responses so far out of 88 licensed home‑care agencies), and some hospice and health-system partners are testing home infusion and patient‑controlled analgesia (PCA) pump programs.

Tracy Wodach, president and CEO of the Connecticut Association for Health Care at Home, urged the group to disaggregate survey responses by licensed hospice providers versus general home‑health agencies so policymakers can see provider capacity geographically.

There was debate over rebranding palliative and hospice services for children. Some attendees warned a name change could require a lengthy cultural shift among clinicians and families; others said an umbrella "levels of care" model that combines palliative and hospice services under one program could reduce stigma and simplify concurrent care and reimbursement.

Eileen O'Shea and other nursing representatives noted national shifts in nursing education: a 2017 call to action and the American Association of Colleges of Nursing's 2021 Essentials now require palliative-care content in accredited undergraduate nursing programs, which speakers said will expand the pool of palliative‑care‑ready clinicians over time.

Jiang said she expects to publish the white paper by the end of the month and offered to share a draft with the working group. "If you send me a list of things that you would want some support on, please feel free to do that," she said, and attendees agreed to use the draft to help craft the legislative language requested by Sen. Anwar.

Next steps and directions from the meeting: Jiang will share a draft white paper with the subgroup; staff will present the group's framework and recommended bill language to the full coalition; the full group will meet Feb. 25 at 2 p.m. to consider the draft and finalize items to give to legislative staff ahead of the March 1 deadline. The meeting closed with a motion to adjourn recorded without a roll call.

Ending note: attendees emphasized that addressing the issues raised—payment reform, licensing adjustments, data collection, workforce development and home‑infusion capacity—will require further policy work and potential funding commitments beyond the March filing date.