As Health Canada prepares to introduce new reporting requirements on Nov. 1 for clinicians involved with medical assistance in dying, practitioners and observers are lauding the changes, but also raising concerns about what they could mean for providers and patients.
Assisted death was legalized in Canada in June 2016, but since then, data collection about patients and providers has been inconsistent across the country.
The new regulations will require all physicians and nurse practitioners who receive a request for assisted death to file a report including — among many other details — the type of illness, a description of the patient's suffering, why they believe the request was voluntary, why a patient was deemed ineligible and why a patient withdrew a request.
Health Canada will publicly report the data each year.
From the time the legislation was enacted until the end of 2017, 3,714 Canadians have received assisted death, according to the department's most recent report.
The CEO of Dying with Dignity Canada said compiling consistent and comprehensive data across all territories and provinces will be valuable.
"I think for the peace of mind of the country, especially when you start with a new type of health care like this, having meaningful data helps us assess how assisted dying is working and where the gaps might be," said Shanaaz Gokool.
But Gokool is worried that the amount of time it takes to complete the reports will deter clinicians from providing the service — and that could affect patient access.
"They [Health Canada] estimate a full reporting per patient will take a matter of a number of minutes. And we actually think that that may not be the case," she said.
"It's really, really important to balance our need for information and data … with the rights of the vulnerable people who are already struggling trying to find the help that they need from the limited number of clinicians who assess and provide medical assistance in dying," she said.
Shortage of providers
Dr. Tim Holland, the head of Doctors Nova Scotia, shares that concern.
"The supply of providers does not meet up with demand," said Holland, who has worked with about a dozen assisted death patients. "There are definitely patients across the province who request the service, but just due to a lack of providers are unable to access it."
Providers in Nova Scotia and other provinces have been filing reports about assisted death cases to their provincial bodies. But as of Nov. 1, clinicians in some provinces, including Nova Scotia, will be required to report to Health Canada instead.
Holland worries it will take a long time for Health Canada to transfer data back to provincial bodies so they can use it to make decisions and respond to demands on the ground.
"I'm maybe being a bit cynical … but based on the way the federal health systems oftentimes respond to provinces' requests for information, I wouldn't be surprised if we're not getting the data back in six months or a year later past when we needed it," he said.
In an email, Health Canada said it will share MAID data with provinces and territories within days or weeks.
Lack of information
Dr. Stefanie Green of the Canadian Association of MAID Assessors and Providers, said clinicians in some provinces, like Quebec, may even be required to report to both their provincial body and Health Canada.
"We're two weeks away now. There's not a lot of information that's been disseminated to the people who will have to be reporting about how to do that and where to do that and what's involved," said Green. "So I'm a little concerned that the rollout may not be as smooth as everybody intends."
Green said the lack of information given to assisted death providers is especially worrisome because they can face jail time if they knowingly fail to complete the reports properly.
"If I'm going to be criminally liable for not doing it properly, I'd like to be informed how to do it properly," she said. "So I feel a little bit let down by that."
"What happens to people who request an assisted death but don't get one? We don't know about those people. We don't know whether they've died waiting. Maybe they haven't got access. Maybe there's an issue of access that we don't know about. Maybe they've lost capacity. Maybe the legislation needs to be tweaked to allow for these people to continue, or maybe not.
"So, issues of access, issues of process, issues of vulnerability and just transparency are really, really important."