Working group flags low MOLST awareness, inconsistent referrals and respite gaps in pediatric palliative care

Members of the Champion Care Action Team spent the meeting reviewing barriers to pediatric palliative care and hospice and mapping next steps to meet an upcoming February 6 report deadline. Participants stressed that lack of clinician and family awareness of MOLST (Medical Orders for Life‑Sustaining Treatment), inconsistent referral processes, workforce capacity and licensing constraints around respite care are the largest practical obstacles to delivering timely, family‑centered care.

The group said greater education and clearer tools are essential. One participant summarized the problem with paperwork portability: "There really can't be enough copies in enough places," reflecting concerns that MOLST forms written in a hospital often do not travel with children who are mobile or who travel for family events. The advisory council reported plans to develop a consumer FAQ and a training deck to raise awareness among clinicians and families in 2026.

Participants described how gaps appear at multiple points: inpatient admission packets for young adults treated in pediatric settings do not routinely mention MOLST or explain decision tools; some residents and nonpalliative specialists do not recognize when to request a palliative consultation; and referral triggers sometimes go unused because specialty teams lack the bandwidth to respond.

The meeting also examined the special needs of adolescents and young adults receiving pediatric care. Speakers noted that units such as PICU or PCICU may hesitate to continue pediatric protocols or accept young adult patients despite specialty centers that support them, creating inconsistency in access. Members urged explicit guidance on transitions and portable documentation so families and receiving clinicians know where to find and present a MOLST form when a child travels.

On standards and certification, participants discussed the concept of minimum baseline training or credential goals that would define "best in class" pediatric palliative care. The Connecticut Palliative Care Advisory Council was identified as a natural partner to help develop or endorse minimum standards; members suggested coordinating draft language and recognizing existing state efforts rather than duplicating work.

Respite care prompted extended discussion. Speakers noted two recurring limits: (1) respite programs that do not require hospice enrollment tend to be philanthropic and therefore unstable, and (2) many in‑facility or programmatic respite offerings are constrained by licensing that limits service unless a child is on hospice. The group also noted payer mechanisms that can provide hours (a participant referenced an example of a 420‑hour bank used by some private insurers), but said navigation and licensing limit families’ ability to use those hours for the kind of out‑of‑home respite many parents ask for.

Members suggested a phased, multi‑year implementation approach: immediate priorities include consolidating an "end‑to‑end" visual pathway (recognition → stabilization → MOLST/referral → handoff → community supports), vetting interstate policy models (examples mentioned included Michigan and recent DC Medicaid guidance), and preparing educational materials for clinicians, families and nonclinical staff. Technology solutions — for example, a curated, searchable online resource or an AI‑assisted aggregator of vetted materials — were proposed as one possible way to increase access to consistent information for both families and clinicians.

Near‑term operational steps agreed during the meeting included trying to schedule an in‑person working meeting in January at a children’s hospital to finalize content and workflows, inviting a representative about the Katie Beckett waiver to a future meeting, and compiling state and interstate policy examples for the group to review. The group aims to finalize materials for a February 6 report.

What the meeting did not do: there were no formal votes or motions, and no changes to regulation or licensing were adopted. Participants focused on developing recommendations, education materials and referral pathways and on identifying partner organizations for next‑step work.

Next steps listed by the group included circulating the slides and draft materials, scheduling the in‑person working meeting in January, coordinating with the Connecticut Palliative Care Advisory Council on minimum standards, inviting the Katie Beckett waiver representative and collecting policy examples (including the recent DC Medicaid statement on concurrent care and hospice).