On Thursday, Canada revealed new legislation aimed at making assisted dying legal. Doctors, pharmacists and nurses will be able to help very sick people to medically end their lives, without worrying that they’ll go to jail for it.
Right-to-die advocates say it’s a huge step forward, and that it helps shine light on a practice that has been done behind closed doors, often in less-than-ideal conditions. (Earlier this year, activist John Hofsess wrote about how he’d helped eight people die, including Canadian poet Al Purdy, before travelling to Switzerland for his own assisted death. He published a posthumous account in Toronto Life.)
There are lots of questions around how assisted dying will actually work—and one of the most important is how, exactly, we’ll track the people who choose it. What's not up for debate is that collecting every bit of data will be crucially important.
Say that lots of patients suffering from one specific condition, like ALS or multiple sclerosis, request an assisted death. It’s important to know that, because it could mean we need to allocate more resources to the disease, for example. Say there are clusters of assisted deaths in certain parts of the country, but not others, or among certain populations. Knowing that will be vital to understanding how Canadians are choosing to die—and to preventing any abuse in the system.
The government has proposed to set up mandatory monitoring, but the details have yet to be sorted out. Anyone who participates in an assisted death and fails to report it will face some kind of sanction, according to the scanty details.
Canadians are still debating whether to even include “physician-assisted death” on official death certificates, which are used to gather mortality data.
A lot of people still don’t like the idea of including a doctor-insisted death on a certificate, partly because there’s still a stigma attached to it. Maybe the patient doesn’t want her family to know. There was also the chance it would affect insurance payouts: some companies won’t pay out if the person died by suicide.
In December, Jocelyn Downie and Kacie Oliver of Dalhousie University, in Halifax, published a paper in the Canadian Medical Association Journal arguing that doctor-assisted deaths should be stated on all death certificates, alongside the illness that caused the patient to seek it out.
“Death certificates will give access to some information, if it’s done in the way I advocate,” Downie told Motherboard. “But they’re infamously badly completed,” and aren’t always the most reliable documents as a result. For that reason, we need a national tracking system, too.
Other places that allow for medically assisted death, like Belgium, the Netherlands, and Oregon, mandate reporting. Oregon, for one, issues an annual report on assisted dying in the state, and according to Downie, the Netherlands commissions a big review on patient outcomes every five years.
Ottawa says it’s going to study whether to extend the right to die to those with a mental illness but no physical disability, “mature minors,” and people with an advance directive, although none of these groups are included in legislation for now.
As for the doctors, although earlier surveys have found that a majority aren’t keen to help patients die, Dr. Jeff Blackmer of the Canadian Medical Association doesn’t think this will be an issue. “About 30 percent of our members have said that, in theory, they would be interested in participating,” he told Motherboard. “That’s tens of thousands of physicians.”
In Oregon, he continued, less than 1 percent of physicians perform assisted deaths.
Still, all of this does raise questions about whether people in rural and northern Canada will be able to access an assisted death if they need it—access in remote areas is always a healthcare challenge here—but, according to Blackmer, the fact that nurse practitioners were included in the new legislation should help with access in remote places where no doctors are nearby.
Canada is entering brand-new territory. Unless we do a thorough job of tracking patients before and after each assisted death, we won’t know where we’re headed.