Patient Choices, Vermont Ethics Network tell House panel Act 39 use has risen; gaps remain in palliative care and hospice support

Patient Choices Vermont and the Vermont Ethics Network told the House Human Services Committee on Oct. 12 that more Vermonters and some out-of-state residents are asking about medical aid in dying since Act 39 was expanded, but gaps remain in community palliative care, hospice capacity and post-implementation data.

Patient Choices Vermont co-founder Betsy Walkerman and Executive Director Amy Bruce said inquiries and web traffic have risen in the past year. "Our website traffic after the passage of that law went up to 20,000 20-some thousand views per year," Walkerman said. Bruce said medical aid in dying "is a very important part of comprehensive end of life care," and that increasing awareness explains much of the higher demand.

The group reported roughly "a thousand a year" of people seeking information and said out‑of‑state use is likely in the low dozens, with many would-be out-of-state patients deterred by the practical difficulty of completing the process in Vermont. Walkerman and Bruce described a "Wayfinder" volunteer network that provides logistics and emotional support to people who travel here to complete the process and to the clinicians who serve them.

Cindy Brazizzi, director and ethicist at the Vermont Ethics Network, told the committee the network is seeing increased requests on related topics and is managing a larger workload for advance directives. "We're upwards of 55,000 Vermonters now who have documents in the registry," Brazizzi said, and her office has handled "over 1,200 calls from the community" in the past six months on issues ranging from advanced directives to medical-aid-in-dying questions.

Brazizzi and Patient Choices staff described several implementation challenges: limited community-based palliative care outside hospital settings, workforce and billing barriers for home-based palliative models, and moral distress among hospice staff when out-of-state patients arrive with very short hospice stays (often 24–48 hours). Brazizzi said she has received ethics consultations from hospice agencies about that issue and said the short stays "have been morally distressing for many of these hospice nurses."

Committee members asked about eligibility rules under Act 39, including the six‑month prognosis requirement and the self‑administration rule. Walkerman and Bruce explained the six‑month prognosis mirrors hospice eligibility and is designed to limit aid-in-dying access to patients who are terminally ill; Bruce noted prognosis can change and that decisions about treatments remain patient-driven under Vermont patient‑rights law. Regarding self‑administration, Walkerman said the requirement exists to ensure the final act is performed by the individual seeking it; she also noted that the law provides civil and criminal liability protections for providers who follow the statutory process.

Panel members and witnesses discussed other recurring questions: dementia and capacity (witnesses said people with dementia generally do not qualify once they lack decisional capacity), whether physicians are increasingly willing to discuss or prescribe (witnesses said more clinicians will have the conversations and that coaching for first‑time prescribers helps), and the possibility of future statutory changes to keep the law aligned with clinical practice.

Brazizzi described ongoing Ethics Network work on the Vermont Advanced Directive Registry and access for people without internet skills: the network now scans and uploads documents for Vermonters who cannot upload them themselves and has hired staff to maintain that service. She also raised an emerging policy concern about ‘‘treatment over objection’’ for medically impaired patients (for example, some people with dementia or altered mental status), noting that Vermont lacks a clear non‑psychiatric legal pathway to hold medically unsafe patients when the reason for incapacity is not psychiatric.

No formal legislative proposals were adopted at the hearing. Witnesses said Patient Choices and the Ethics Network plan to continue gathering data and provider feedback and to return with recommended statutory or administrative changes if needed. Committee members asked the groups to coordinate with the Department of Health on updated usage and outcome data.

The committee did not take votes or direct staff to drafted legislation during the session; witnesses emphasized they are collecting implementation feedback and may propose changes in the coming legislative cycle.