This article reports on interviews with a subset of 37 providers in the Vermont SAID sample who had clinical experience with Act 39. Physicians were roughly split between hospital and community-based practices, with most (53%) specializing in internal or family medicine (see Table 1). Their mean age was 51.3. At the time of interview, of the 19 physicians, 12 had participated in Act 39 as prescribing physicians; the remainder had initiated but not completed the Act 39 protocol (n = 3), participated as a second physician to confirm the patient’s diagnosis, prognosis, and decisional capacity (n = 3), or counseled patients (n = 1). The mean age of nurses and social workers was 52.5, with most working for hospice and home health agencies (61%). While all professionals in this group engaged in clinical care for patients pursuing Act 39, specialty clinic nurse practitioners were more likely to assist with navigating access to AID. Participating health care professionals worked in ten of Vermont’s 14 counties.
We identified five domains in which participants engaged with AID after legalization: clinical communication and counseling, the Act 39 protocol, prescribing medication, planning for death, and professional education. We elaborate on these domains below and provide examples and illustrative quotations from the interviews in Table 2.
Participants emphasized that reassuring patients that they would be there for them and exploring their reasons for requesting AID were important first steps. Providers were particularly attuned to probing for concerns about finances or being a burden on others due to terminal illness, and often framed Act 39 as a last-resort option. Before seriously pursuing Act 39, providers sought to address untreated symptoms, such as pain and depression, and discussed alternative options for end-of-life care, including hospice, palliative care, and voluntary stopping of eating and drinking. One nurse noted that after a patient brings up Act 39, “I feel a little bit more free [sic] to discuss with people the ways that they can maybe hasten or allow the dying process to occur without involving medical assistance” (0123). Only then would they educate patients about the law, including who qualifies and how it works. Many providers noted that discussing AID could open up conversations about other end-of-life concerns. As one physician puts it, “There are more people who can say, I think, ‘Can I have that death pill?’ than who can say, ‘What can you do for me while I’m dying that I’m not gonna suffer?’” (0111). Several physicians noted that these issues were difficult to address within a 15–30-min office visit.
Act 39 Protocol
All providers emphasized that understanding the law is time-consuming and that it is difficult to grasp the details before beginning the process (see Box 1). Providers noted that Act 39 gives physicians discretion to determine who counts as a state resident, which sometimes put physicians in an uncomfortable position because determining residency lay outside the scope of their professional judgment. Some physicians felt uneasy with the law’s competency requirement because there was no mechanism to ensure that the patient retained capacity if she did not utilize the prescription immediately. Others noted that prognostic uncertainty made it difficult to confirm the eligibility criteria, which include expected death within 6 months. Nurses and social workers contributed to other aspects of the Act 39 protocol, such as completing paperwork, finding witnesses, and helping patients to find a second physician. Physicians working in academic specialty clinics found this support helpful, but such support was less available to primary care physicians, particularly those working in community practices. Physicians working in hospital-based practices sometimes felt compelled to consult their hospital’s legal or ethics services before agreeing to prescribe. Many prescribing physicians made house calls at some point to relieve patients of having to make additional office visits for completing the Act 39 protocol, which includes two oral, in-person requests spaced 15 days apart.
Far from the one-time event of writing a script, prescribing was a multi-dimensional practice that involved figuring out what medication and dose to prescribe, determining cost and insurance coverage, and investigating alternative protocols if cost proved to be a barrier (see Box 2). Because few physicians had local colleagues with the relevant clinical experience, prescribing frequently involved consultation with out-of-state physicians. One physician noted that, although there had been other AID cases in her hospital, her patient was the first diagnosed with an obstructive gastrointestinal cancer and she had logistical questions about the patient’s ability to swallow the medication that she discussed with an out-of-state physician. While the burdens of prescribing fell primarily to physicians, nurses and social workers, when available, occasionally helped to identify pharmacies and determine insurance coverage.
Planning for Death
Providers reported guiding patients about how the medication should be prepared (e.g., mixing with applesauce) and how fast it must be consumed. In many cases, providers spent substantial time planning for the day of the death, addressing questions about whether the patient could ingest the medication quickly enough for it to be effective and who would be on call to deal with unanticipated complications. Hospice nurses, in particular, reported some strains around dealing with adverse events: “We’re now making sure we record who the prescriber is to make sure they’re available at that moment because we don’t want them to think hospice is gonna be the one, you know, at 2:00 in the morning … they need to help us” (Nurse, 0132). Providers also considered whether they were personally willing to attend an assisted death if a patient requested that they do so, and if not, which other caregivers would be present to support the patient. Only six providers (two nurses and four physicians) (16.2%) in the sample reported having attended a patient’s death.
Providers lamented the lack of formal education, training, and institutional support around Act 39, and reported seeking out information through informal professional networks and advocacy organizations, such as Compassion and Choices’ “Doc2Doc” program. Several physicians expressed a commitment to educating colleagues about the process, both formally and informally, illustrating that the provider’s role in AID does not necessarily end with a patient’s death. One physician organized a presentation at her hospital to share her experience in navigating the protocol (see Box 1). Another physician scheduled a community dialog at his hospital for colleagues to share views about AID.
How providers experienced the five domains of AID clinical practice depended on their practice setting and the supportive resources available. The extent to which providers felt burdened by these clinical duties was a function of the extent to which Act 39 had been institutionalized in their practice settings. Local experience, the existence of institutional policies to guide the practice, and the availability of social and emotional support from colleagues varied widely. Physicians bore the primary burden of prescribing and educating colleagues. Consequently, a small number of physicians expressed safety concerns regarding possible backlash from opponents of AID, particularly given that many providers were based in small rural communities where “everybody knows where I live” (Physician, 0108). Concerns about how participating in AID might affect one’s relationships with colleagues who opposed the practice were relayed more commonly. Nevertheless, three physicians also expressed tremendous pride in their work. As one physician shared, “At the beginning of this, the oncologist and I would talk about being known as the death doctors around here. And we said it jokingly, but as time goes on, I’m actually kind of proud of that, that I’m one of the people who will do this” (0133).