Connecticut’s pediatric palliative care work group described plans to expand and modernize MOLST (Medical Orders for Life‑Sustaining Treatment) for children and to widen training and digital access, saying the tool is already in use and the advisory council expects an operational modernization next spring.

The work group’s senior adviser to the Department of Public Health, Barbara Cass, summarized MOLST’s legal and program history in Connecticut, including a pilot in 2014 and subsequent statewide authorization in Public Act 17‑70. "MOLST is a medical order for life sustaining treatment," Cass said, and she told the group the form’s purpose is to "represent an individual's decisions about their treatment preferences at the end of their life." The council includes EMS, hospital and long‑term care representatives, advocates and provider organizations, Cass said.

Why it matters: The group framed MOLST as a portable medical order that can be carried across care settings (home, EMS, nursing homes and hospitals) and as a concrete way for families and clinicians to communicate end‑of‑life treatment preferences in urgent situations. Work group members said expanding pediatric access and clarifying operational steps could reduce hospital stays for medically complex children when families and clinicians prefer home‑based palliative or hospice care.

Key details

- Scope and eligibility: Cass said the advisory council defines eligibility as patients who are "at the end stage of a serious life limiting illness or a patient in a condition of advanced chronic progressive frailty," and emphasized there is no age cutoff. The determination is intended to be person‑centered and made in a conversation between the patient (or legally authorized representative) and an eligible provider, the presentation said.

- Eligible providers and training: The work group requires that an eligible provider be a physician, an advanced practice registered nurse (APRN) or a physician assistant who completes CT‑Train MOLST training. Cass described the training as taking roughly "30 to 45 minutes," with a certificate of completion provided.

- Form and legal changes: The group described operational changes under way: the green paper MOLST form has been revised; a recent legislative change removed the witness signature requirement and an updated form will reflect that change. Cass said the modernization aims for a "digital first" approach with a PDF‑fillable form that eligible providers can print and place in the patient’s record.

- Registry and electronic options: Cass said the council is exploring EMOLST/registry options used in other states (Massachusetts and Oregon were cited) and discussed an approach where a MOLST entry could be uploaded to an individual’s electronic clinical record. She cautioned registry work carries costs and implementation questions.

- Pediatric emphasis and training content: The advisory council added a pediatric slide to the training and plans to include pediatric experts in future training sessions to ensure the conversation covers the full age continuum, Cass said.

What participants asked and said

Clinicians and family members raised practical and emotional questions about where to keep MOLST forms and how flexibility at the point of crisis is handled. Representative McCarthy asked about the practical mechanics of a digital‑first approach: "In a digital first environment, is the expectation then that there would be a printed document that would then be placed somewhere?" Cass said the work group is discussing options including automatic upload to clinical records, but noted cost and upkeep are concerns.

Home‑care clinicians emphasized that families may elect more interventions during acute changes and that MOLST must be presented as flexible and revocable. As one clinician said, "I do think that anyone who wants to talk about how they want their care to go is potentially eligible," underscoring a person‑centered, case‑by‑case approach.

A parent who participated in the meeting described the emotional effect of visible documentation and urged staff to counsel families about storage and privacy. "I don't think it should be hanging on the back of a door," the parent said, recommending instead a binder or a school backpack folder to avoid daily visual reminders.

Related policy context

Work group members also discussed broader pediatric palliative and hospice policy work: staff reported roughly 250 children are currently enrolled in the Katie Beckett waiver (receiving Husky/Medicaid despite not meeting financial criteria) while about 300 children remain on a Husky wait list; the group said better access to concurrent care and nursing shifts could reduce costly hospitalizations.

What’s next

Cass said the advisory council is finalizing revised policies and procedures, expanding training (including pediatric content) and planning to release updated materials. The group is developing separate FAQs for eligible providers, health professionals and consumers and anticipates completing modernization steps and wider operational rollout in the coming months.

Limitations and open questions

The meeting recorded no final policy vote. Several operational questions remain open, including how an electronic registry would be funded, how cross‑state portability would be handled, and how EMS teams will be trained consistently to honor flexible or revoked orders. The advisory council plans further outreach, a public FAQ and additional training sessions to address those gaps.

Ending note

Work group leaders said they will continue to refine MOLST guidance and training; they expect the next substantive deliverables — updated form and training materials — to be available as part of the council’s modernization effort in the months ahead.