Rediscovering the art of medicine,rewards,and risks: Physicians’ experience of providing medical assistance in dying in Canada

Introduction

(A Physician’s Story) I just want to emphasize, as cliché as it sounds, this work, being a provider, a prescriber for medical assistance in dying, has been truly extraordinary work. I have met extraordinary people—especially in the early days and continuing today. The courage it took those people to step forward, to ask for this care, these were independent, strong-willed, long-lived, hard-core, independent people. These were extraordinary people who led extraordinary lives. Their whole lives had been like that. They had stories about what they’d done in their lives that were mesmerising. To be able to do this with them and give them this gift, and the reward I got personally and professionally by doing that, was shockingly amazing. And it continues to be, to this day. I find it the most extraordinary work. I keep finding myself in the position of meeting people and finding myself in situations I never would have dreamed of—like holding someone’s hand you just met a week ago, who now trusts you intimately and infinitely to do this most intimate act with them and they’re thanking you as they’re dying. Like crazy things that five years ago I never would have thought possible and they keep coming up, these crazy situations keep coming up. It’s amazing. It blows my mind still. I don’t think I take it for granted yet. I don’t think I ever will. (Physician provider of medical assistance in dying—Participant 5)

Canadian physicians have been directly affected by 2016 legislation ¹ that set the stage for allowing assisted dying under specific legal and regulatory circumstances. Because of the sensitive nature and relative newness of assisted dying in Canada, understanding the experiences of physicians participating in medical assistance in dying (MAiD) is vital to ensuring a smooth transition of assisted dying into health care. This legislation is unique in that it includes voluntary euthanasia (in which a medical practitioner administers a lethal dose of medication to cause the death of a patient) and assisted suicide (in which the medication is administered by the patient). (Note: In the province of Quebec, only voluntary euthanasia is legal.) MAiD heralds an unprecedented change for physicians who have been educated and trained to support life. Physicians with expertise in providing end-of-life care are also entering uncharted territory, personally and professionally. All are being called to rethink their practice by reorienting toward directly assisting eligible patients who make this choice.

The College of Physicians and Surgeons of BC Standards ² states that a physician must “provide patients with enough information and assistance to allow them to make informed choices for themselves” about medically assisted death. The scope of practice extends from performing patient assessments and/or to performing MAiD. Although physicians may conscientiously object to assessing a patient for or performing MAiD and may choose to not be involved, they are required “to provide an effective transfer of care for their patients by advising patients that other physicians may be available to see them” (p. 6). As with other health care professionals, physicians have a duty of care that must be continuous and nondiscriminatory. Although national data are slowly being compiled, ³ and a body of literature is rapidly evolving, to date limited research is available on how physicians are engaging in assisted dying in the Canadian context.

Literature review

The number of jurisdictions across the world where some type of legislation related to assisted dying/suicide and voluntary euthanasia are in place continues to grow since it was first introduced in Switzerland in 1942. Currently, euthanasia is legal in the Netherlands, Belgium, Columbia, Luxembourg, and Canada. Assisted suicide is legal in Switzerland, Germany, the Netherlands, the state of Victoria in Australia, and in the US states of Washington, Oregon, Colorado, Hawaii, Vermont, Montana, Maine, New Jersey, California, and the District of Columbia.

Amendments made to the Canadian Criminal Code on 17 June 2016 mean that Canadians can now legally access MAiD. The spirit of the law is that this new service be provided compassionately and ethically, that all involved are supported, and that harm is not caused to patients or staff. The path to physician involvement in MAiD has been fraught with tension.^4,5 Initially, some physicians struggled to reconcile themselves to this major practice change, but general sentiment is slowly changing. From 2013 to 2015, the number of Canadian physicians supporting MAiD rose from 34% to 45%, with 83% of those surveyed in 2017 supporting the idea of advance requests. ⁶ A recent survey of medical students showed that among Canada’s new generation of doctors, 71% would offer MAiD. ⁷ Although provisions are in place to ensure physicians can decline to help on moral or religious grounds, researchers in Quebec found that the majority of physicians who refused to participate did not oppose MAiD. Rather, their expressed concern was “the emotional burden related to this act and the fear of psychological repercussions.” ⁸

Notwithstanding that what is known about physicians’ experiences in the Canadian context remains scant, a growing body of research from other countries is available. In a recent scoping review, Fujioka et al. ⁹ examined the roles of physicians and other health care professionals in decision-making related to MAiD and the professional challenges that arise when they are confronted with patient requests. Key challenges reported by physicians included tensions caused by colleagues conscientiously objecting to MAiD. In a qualitative study from the Netherlands, some palliative care physicians felt pressured to comply with patients’ requests for euthanasia, despite their own discomfort. ¹⁰ Other challenges included the emotional tensions experienced by palliative care physicians in the Netherlands and United States, including feelings of strain, loneliness, and being conflicted. ¹¹

Similarly, Brooks ¹² conducted a scoping review of qualitative literature and called for further investigation into the experiences of diverse MAiD providers in the Canadian setting. Reported findings specific to Dutch physician providers include studies that underline stressful, negative experiences of providing assisted dying.^10,13 According to another study, physicians in Oregon faced ethical complexities and a negative emotional impact, ¹⁴ and yet they did not express major regrets over their decision to participate. The findings showed how requests for assisted dying prompted discussion of important issues and increased physicians’ confidence and assertiveness in discussing end-of-life issues with other patients. Mixed findings regarding physicians’ experience have been thrown up by, among others, a quantitative study whose authors reported that euthanasia was seen as burdensome and emotional for 42% of all cases of hastening death that they investigated, and 52% of the physicians reported feelings of satisfaction and relief. ¹⁵ Although the body of research is growing regarding physicians’ roles, attitudes, and opinions on assisted dying in Europe and, to some extent, the United States, we aimed to understand better the direct physician-provider experience in the Canadian context.

Study purpose and design

The purpose of this study was to enhance the general understanding of Canadian physicians’ experience of directly providing MAiD (referred to as “providers”).

Methodology

We used a qualitative design drawing on thematic inquiry ¹⁶ to identify themes, as well as interpretive description ¹⁷ to work interpretively with participants’ narratives.

Ethics and rigor

We received approval from the Human Research Ethics Board as per Tri-Council Policy Statement. ¹⁸ This included approval from Island Health and the University of Victoria.

Findings

Physicians’ experiences of providing MAiD were conceptualized into three overarching themes of rediscovering the art of medicine, gaining unexpected rewards, and negotiating risks and challenges. Each theme was accompanied by descriptive sub-themes (Table 1).

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Table 1.

Overarching themes, sub themes.

Themes	Description	Sub-themes
Rediscovering the art of medicine	Providing assisted dying is a process that calls physicians into embodied awareness and relationships of intimacy and grace.	• Remembering whole-person care • Practicing differently • Intimate, emotional engagement • Embodied awareness
Gaining unexpected rewards	Personal and professional well-being is gained from satisfaction and appreciation of living core values.	• Compassion satisfaction • Aligning values and beliefs • Conviction of doing the right thing • Outpouring of gratitude
Negotiating risks and challenges	Legal, collegial, and institutional barriers must be navigated. Individuals have concerns over sustainability of workloads.	• Being vulnerable • Collegial discord • Risk of reprisals • Workload and financial impact

Negotiating risks and challenges

Participants were also frank about fears and challenges associated with being a provider, especially in the early days after the legislation was passed. These included concerns about what their families might think and worries for their personal safety. They acknowledged feeling vulnerable by stepping up to offer this service when others would not and opting to make their names public as MAiD providers. As one physician stated, “So emotionally, I was fearful but not so much of the work as I was of the backlash of the work” (#5):

I was worried that it would be like abortion, meaning providers would be at risk of shootings and stabbings and having their offices blown up and that has not happened with MAiD . . . it has not elicited the same level of anger. (#7)

Fear of reprisal from oversight bodies such as the coroner’s office was particularly present in the early days. A heightened sense of risk related to what seemed for some to be disproportionate surveillance: “We’re being scrutinized a lot more” and “I’ve never once been called by the coroner, but for a MAiD death I’ve been called two or three times.” Concerns over repercussions led to time-consuming and meticulous consultation notes for their personal records. Some worried whether their notes would be sufficiently thorough and defensible. The range of patient diagnoses necessitated significant background work if providers were not familiar with particular diseases. This added layers of apprehension when conducting an assessment:

Your heart sort of sinks when you get this letter from the coroner because I guess they have great powers to request anything so you kind of think, oh God, what’s going to happen? It is pretty intense making sure you get all the pieces in order because you can’t be wrong from a procedural aspect. There is this kind of fear in the background that there could be legal repercussions, so I suppose that’s part of the emotions. (#1)

In contrast, participants described strong prescriber support received via a web-based physician list-serve. Some spoke cautiously about their national organization that provided legal advice. The thornier ethical and legal issues were the most worrisome, and as one physician explained, support from legal advisors was often limited: “As lawyers [they] are very conservative and so with any sort of grey area—they’re going to say don’t do it.” This was perceived as frustrating:

I can understand why they’re super conservative about their advice but at the same time because they do that, it makes me less likely to actually seek their advice because I already know what they’re going to say. Whereas if they’re more, I guess, understanding of the situation and able or willing to put—I think it’s important for our peace of mind that they put it in writing because when they give us an opinion in writing that’s something I keep always in my documents—if they were willing to say in writing that they were able to sanction or recommend, or say that it seems reasonable, I’d be much more likely to seek their advice in the future. And I think I’m actually less and less inclined to seek their advice because of that, which is not good. I should be wanting to get an opinion from them. But then others argue that we should be consulting with other physicians, not with lawyers because the decision lies with us, not with lawyers. (#6)

Collegial challenges also included tensions with physicians related to poor communication when patients requested MAiD without informing their attending physician or palliative care team. Participants described trying to protect professional courtesy:

It is sort of a passive relationship with the personal physician. I’m never too sure where I stand on that. I try and give them a bit of [a] heads up if they haven’t already been aware that this is happening if the patient hasn’t communicated. (#1)

Feeling unsupported, especially in smaller communities, was another issue identified by some providers. Early in 2016, participants spoke of resistance from individuals or faith-based institutions disagreeing with the legislation:

One thing I should add so you understand what’s difficult—what has been the biggest thing in our town—because the hospital was Catholic, we had limited supports, so we could not get patients to get an IV. We had to do a lot of undercover, underground work. We had to visit patients afterhours, pretend to just be visiting them, close the door and do an assessment whispering behind the closed door, or ask other colleagues to just quickly come to a patient’s room to quickly sign a request form and then all scatter so no one knows a request form was signed. These things were hard because we had to manage all of this on top of managing the family’s grief, the patient’s process, the legal process, and having to find a place to do this in a community that was otherwise not very supportive. The hardest thing was witnessing patients suffer because the hospital would not allow certain things to happen. (#2)

Another challenge considered part of the process was turning down a patient who was not eligible. A further challenge arose on hearing the patient say they would “end it themselves” if they were not deemed eligible. Other difficulties were having to cancel a planned MAiD because of a patient’s loss of capacity and facing a devastated family. Although most families reportedly accepted these often unforeseeable situations, participants shared infrequent stories of facing loud or threatening families or when a patient wanted MAiD and his or her partner did not support the decision.

Finally, concerns about insufficient remuneration and a growing workload were widely shared. Most GPs had no administrative assistant who could complete the required paperwork; the volume and process of reporting were perceived as burdensome. As one participant shared, “There’s no other aspect of medicine that I practice where I’m shuffling that much paperwork and I’m personally responsible for getting it done” (#6).

Fears of burnout and the unsustainability of workload were pervasive. One provider shared, “There were times when I was getting five or six referrals in a week and it was completely overwhelming.” With the exception of a few, most physicians conducted MAiD on top of their regular workload, with many doing so in the evenings or on weekends. One participant shared, “The future of providing access and quality end-of-life care for those who cho[o]se MAiD is not sustainable with the lack of physicians or nurse practitioners” and the current system. Others shared hard-won lessons of putting boundaries on this work by designating particular days and times for providing MAiD. Some described limiting their role as consultant on MAiD to help with the workload, recognizing: “I’m not the expert in those other alternatives, especially complex palliative medicine or whatever else; I’ll get those folks involved.”

Discussion

The themes of rediscovering the art of medicine, gaining unexpected rewards, and negotiating risks and challenges might be expected with a medical change of this magnitude. Personal passion and conviction, followed by intense satisfaction, provided a foundation for participants’ willingness and commitment to provide assisted dying. We are seeing similar perspectives in editorials and personal narratives across Canada. To name a few, eminent palliative care physician and MAiD provider Sandy Buchman^19,20 and three physicians featured by Evans ²¹ share similar commitments. Family physician Tony Reid ²² described his experience of providing MAiD as “an extension of palliative care”; “profound” and “astonishingly rewarding,” “it combines so many of the skills and art that make family medicine so fulfilling” (p. 640). Many participants also saw MAiD work as an extension of palliative care and, while facing resistance from some palliative care providers, they appreciated deeper connections and the recent goal of coexistence ²³ with palliative care teams in their communities.

Limitations

Interviews occurred in the first 2 years of assisted dying legislation being enacted (March–June 2018) and provided an early account of physicians’ experiences as MAiD providers. The study was limited in its diversity of perspectives; we sought to recruit physicians who held objections to or moral conflicts with assisted dying but were unsuccessful in our efforts. Participants came from a single health authority where GPs provide assisted dying as sole practitioners. Consequently, we excluded nurse practitioners who were not serving in a provider role at that time in the health authority. Finally, sampling was purposive, and participants self-selected, which should be considered when interpreting these findings.

Closing thoughts

In this study, we addressed existing gaps in knowledge of how providers are making sense of and being affected by MAiD. Such evidence is vital for ensuring responsive, sustainable, and effective implementation of assisted dying. Overwhelmingly, the physician participants shared stories that conveyed how the rewards of the practice outweighed the risks and burdens. Participants related to the experience as rediscovering the art of medicine in a way that was unexpectedly satisfying and meaningful, both professionally and personally.