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Globe and Mail writer Andre Picard.

Globe and Mail writer Andre Picard.

André Picard

We can’t debate the assisted dying law without data Add to ...

It’s been almost three months since Canada’s new assisted-death legislation was adopted and we know surprisingly little about how well it’s working.

How many legal assisted deaths have there been? No one is really saying – at least not officially. The closest we have to data is a CBC News survey of the provinces and territories that found at least 118 cases since Bill C-14 took effect on June 17. That’s just more than one a day. (To put that number in context, about 750 Canadians die on average each day.)

The CBC found there were 49 assisted deaths in Ontario, 46 in British Columbia, 15 in Alberta, eight in Manitoba and “fewer than five” in Saskatchewan. Newfoundland and Labrador, Prince Edward Island, Northwest Territories and Nunavut recorded no cases. Quebec, New Brunswick and Nova Scotia refused to say how many assisted deaths were recorded.

We know, however, from earlier reports in La Presse that since Quebec’s right-to-die law took effect last December, there have been 30 assisted deaths in that province, but the rate seems to have slowed since the federal law was adopted. (Quebec’s law does have public reporting provisions, and a detailed report is expected to be published at the end of September.)

This lack of public disclosure Canada-wide is troubling. It’s also a reminder that as much as the federal government would like to put the divisive assisted-death debate behind it, there is still much work to do, beginning with the drafting of regulations that flesh out the legislation.

One of the key elements of the regulatory regime needs to be data collection and analysis. This is especially important because 1) the legislation features a requirement for a parliamentary review within five years; 2) the legal challenges to the law revolve around appropriate access, so we need to know who is accessing assisted death now and 3) Canada’s decentralized health system means that, for consistency’s sake, there needs to be agreement on the kinds of information to be provided, the body that would analyze the information and how often reports would be published.

To quote the federal Justice Department’s backgrounder on Bill C-14: “Monitoring would be critical for transparency and public accountability of medical assistance in dying, as well as to evaluate whether the law is achieving its goals of respecting autonomy for eligible persons to choose medical assistance in dying, while protecting vulnerable persons and the conscience rights of health-care practitioners.” Translated, what this legalese means is that if you want to know if the law is working, you have to study how it’s being applied, so data collection is crucial.

What we know, anecdotally, is that, as many feared, the law’s controversial wording, that death must be “reasonably foreseeable” for a patient to be eligible for assisted death is proving problematic. Practically, because the term “reasonably foreseeable” has no legal definition and no medical meaning, physicians tend to be interpreting in a highly restrictive manner and, as a result, many are being denied an assisted death.

By some estimates, only one in 10 requests for assisted death is being granted. But, again, that’s anecdotal, and what we need is hard data to understand who is being refused and if that’s appropriate or not.

One of the most troubling cases though is that of Hélène L., a 70-year-old Quebec woman with multiple sclerosis who starved herself to death after being denied an assisted death. Palliative-care physician Pierre Viens – who has provided assisted death to four other patients – wrote a scathing denunciation of the “legal morass” that has left patients such as Hélène L. suffering and denied the right to die on their own terms. Quebec’s Health Minister Gaétan Barrette agreed, repeating his criticism that federal legislation is “cruel and inhumane” and does not respect the spirit of the Supreme Court ruling.

Ottawa, of course, continues to insist that Bill C-14 strikes an “appropriate balance” between granting assisted death and protecting the vulnerable. The best way to demonstrate if the law is working or not, however, is to be transparent: Provide a thorough public accounting of cases, including who was granted assisted death (while respecting the privacy of individuals, of course), who was denied, their underlying conditions and the ultimate outcome.

In other words, let the data speak – for the dead, the living and those who wish to die with dignity.

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