Accessing the right to die looks very different in a rural setting.
As the federal government grapples with a legislative framework for physician-assisted suicide and a June deadline to put it in place, policy makers must account for the realities of its more remote settings.
"One of the issues is that the rural perspective and the rural resources can be very different than what people in the big cities take for granted," said Catharine Schiller, a lawyer, nurse and assistant professor in UNBC's School of Nursing.
Schiller recalled watching a recent interview that discussed an ideal setting where a family doctor who understood the intricacies of a person's medical past and overall health would help the person make an informed decision (and only if they fit the parameters laid out in Carter v. Canada Supreme Court decision that a person must be "suffering intolerably as a result of a grievous and irremediable medical condition.")
"All I could think of was, that sounds so much like a big city perspective because when you talk to somebody who's in northern B.C. where we have a shortage of family physicians, you're unlikely to have had a family physician for years and years and years," she said.
In many cases, it isn't doctors who are the primary medical providers in these areas, she said, and the Carter decision didn't address caregivers like nurse practitioners.
"And many rural communities - more and more in fact - are implementing health delivery frameworks that are led by a nurse practitioner not by a physician or they may be led by a registered nurse so how do those practitioners fit into this framework?" Schiller asked.
For her, the rural perspective comes down to two key issues: who is involved in providing assisted death as an option and how can health authorities ensure access to those people?
"Both of those can be very problematic in a rural setting," she said, but the most recent February report from the Special Joint Committee on Physician-Assisted Dying has started to recognize those discrepancies.
"(The) limited access that people living in rural and remote regions of Canada may have to a physician, to ensure access to (medical assistance in dying) across Canada" must be taken into account said the preamble to the recommendation for a wider interpretation of medical professionals.
"Pharmacists and other health care practitioners who provide services relating to medical assistance in dying, should also be exempted," said the report, as should nurse practitioners and registered nurses working under the direction of a physician, from being found in violation of the Criminal Code.
"There are a number of issues that became evident out of the Supreme of Canada decision that seem to be more problematic from a rural perspective but are certainly not insurmountable if we're creative about how we address them," Schiller said.
End of life care
The discussion around rural access to assisted death is tied in with a similarly limited access to palliative care resources.
"Among jurisdictions that have appropriate policies and procedures in place to ensure access to services, there is still a cited lack of resources, lack of training and geography (rural areas) that limits their ability to provide adequate palliative home care services," said a Canadian Hospice Palliative Care Association fact sheet.
The association said 73 per cent of Canadians "feel that the provincial governments place too little priority on this end-of-life care."
A further 35 per cent rated it as "far too little."
Health minister Terry Lake has said the province won't move on its own policies until the federal government has crafted its legislation.
"Palliative care is not accessible to all Canadians at this time and there's a large number of barriers to access of care, availability of care, appropriate timing for care," said Shannon Freeman, also a UNBC nursing instructor, who recently published an article in BioMed Central of her study that looked at Ontario palliative home care patients who said they wanted to die.
End-of-life care is a broad term that now must include both physician-assisted death and palliative care.
"Physician-assisted dying cannot replace a good palliative care strategy that is also set up to succeed in rural settings and a good palliative care strategy cannot exclude the physician-assisted death," said Schiller.
"Both of them have to be part of the end-of-life care strategy that we develop and that end-of-life care strategy can't be something that is only implementable in a big city."
In her work, Freeman found of the 4,840 clients studied, almost seven per cent said they had a "wish to die now."
"There's quite a diversity in what that wish to die, what those clients are looking like," she said.
"Of people who expressed a wish to die, not all of them were experiencing intolerable suffering and pain. There's a lot of variation."
Nearly one quarter - 23.8 per cent - also exhibited depressive symptoms, the study found.
"These people were also more likely to be struggling with the meaning of life, exhibiting recent declines in cognition, exhibiting more weigh less and having more distress," said Freeman.
She also identified another group who said they wanted to die but didn't show signs of depression.
"These people were more likely to report having a positive outlook on life, still having things they feel that they can contribute, feeling completion in legal and financial matters."
Her work has filled a need for nurses to better understand the patient population that might express the wish to die and "give some evidence to reduce some of the fear associated with having conversations about preferences at end of life."
The focus should be on looking at the whole person and not just their physical symptoms or the disease that they have, Freeman said.
"Looking at how it affects all aspects of their life, so including their psycho-social needs, their family needs and their financial needs and we keep all of those parts of the person," she said.
"That we have a more total person view on how we provide care at end of life and it just doesn't get sidetracked to be a very narrow focused thing. Because there's such individual experiences that are happening as persons near end of life and it's important that that individual experience be heard."
That must also include indigenous perspectives, Schiller said, which the recent committee report also recognized.
"We need to make sure whatever we're putting into place that applies to indigenous populations takes into account indigenous healing practices and making sure that we're taking care of vulnerable populations and populations who may have different belief systems and different ways of approaching the health and healing," Schiller said.
The legal language, too, is not necessarily obvious.
Citing "intolerable suffering," Schiller noted: "what exactly that pans out to mean, it's legal language and through that gets interpreted into clinical language and into individual clinical profiles of a person - how that gets applied - is going to be challenging to say the least."
While Schiller doesn't think the June deadline is too soon to put policy in place - Quebec's Bill 52 has done a lot of the leg work, she said - developing fair access to both palliative and physician assisted death will be an ongoing conversation.
"It's going to take time to develop that full end of life care strategy so while we're developing those services we need to make sure that we're doing the best we can to give people whatever options we can give them and to make sure the choices that they're making are free and informed," Schiller said.
