As Canadians from all walks of life continue to contemplate how medical assistance in dying (MAiD) may influence their end-of-life decision-making, a recent study out of the University of Lethbridge suggests that those living in a rural setting are influenced by distinct factors that present both challenges and opportunities with respect to MAiD.
Dr. Julia Brassolotto, a researcher in the Faculty of Health Sciences’ Public Health program, and her team interviewed physicians and nurse practitioners, nurses, family members, clinical ethicists and patients from rural communities throughout southern Alberta about their attitudes and experiences with MAiD and its delivery. In all, 29 participants were involved in the study, including eight family members and three patients. The stories they tell and the perceptions they convey give a glimpse of the attitudes and experiences unique to a rural setting and may influence health-care policy and standards going forward.
“Given the distinct aspects of rurality that may impact health service access and utilization, and the current dearth of literature related to MAiD in rural settings, our study was initiated to better understand rural residents’ experience with MAiD,” says Brassolotto, a former Alberta Innovates Health Solution (AIHS) Research Chair in Rural Health and Well-Being. “Although this study focuses on southern Alberta, we believe our findings may have implications for other jurisdictions in which MAiD is legal or under consideration, and that MAiD policy and service provision ought to be context-sensitive and attentive to the particularities of rural settings.”
Through the interview process, researchers found that, in general, there is limited awareness and understanding about MAiD in southern Alberta, health-care staff have minimal MAiD-related training and continuing education opportunities, many patients do not know that MAiD is available in their rural communities, some members of the public do not know that the practice is legal, and there are some misperceptions and disinformation about the practice in circulation.
They noted that, in some ways, the expectations and stereotypes about the region were confirmed. In a region with a populace that presents an above average representation of socially conservative, religious people, conscientious objection to MAiD is prevalent. Several study participants shared how they’d experienced hearing unprofessional comments about MAiD by health-care practitioners who were not only unsupportive of the practice but actively worked against the program.
“On the other hand, some participants’ experiences challenged the stereotypes about the region,” says Brassolotto. “For instance, we were told that the backlash that some participants had anticipated never came to fruition and that community members often “agreed to disagree” rather than adopt a polarized stance on the issue.”
Some participants suggested that their rural roots and personal histories with local ranching informed their decisions to become involved with the MAiD program. They indicated the program reflected similar values about humanely alleviating suffering for living beings at the end of their lives. Several other patients indicated they wanted to die on their land.
“I don’t want to be on machines. I don’t want to be in a respite home. I don’t want to be in a nursing home,” said one patient. “When I pass away there’s going to be no gravesite, we’re going to take my horse and he is going to haul my fat ass and the ashes from one of my favourite dogs and we’re going to go west of town and they’re going to spread them in the wind.”
Brassolotto also explored how personal and professional lives often intersect in rural settings. Communities are small and health-care providers and patients inevitably have personal relationships as well, which can significantly influence an intimate process such as MAiD provision.
“Several physicians described MAiD provision as part of the “cradle to the grave care” that they offer rural residents,” says Brassolotto.
On the other hand, privacy concerns are substantial with more visibility and less anonymity in rural settings. Some physicians worried about potential harassment they or their families might receive if they were to become known as a MAiD provider, while some nurses claimed that being casually involved with the MAiD program felt like being a member of a “secret society.”
“I think in southern Alberta you have to be very aware that MAiD isn't something that a lot of the physicians down here are on board with. I told very few people,” one nurse said. “It was almost like it's a secret society, and I didn't ever want them to know that I was providing that service or a part of that program. I feel like it would have changed how they looked at me or felt about me, and maybe potentially how we were able to interact at work.”
The study aptly identified the many issues associated with MAiD and the specific considerations when applied in a rural setting — issues that strike at the heart of access to information about MAiD as well as service delivery.
“Overall, our findings suggest that the particulars of the rural setting are significant for experiences with MAiD and that relational dynamics in the rural locale complicate decisions about involvement with the MAiD program,” says Brassolotto. “Rurality has distinct implications for MAiD that are worthy of greater attention in policy and public discourse.”
The full study can be found on Science Direct.