2-year FOI battle with Sudbury hospital yields rare look at medically assisted death

CBC Sudbury has obtained the only internal documents that might ever be released about medically assisted dying in Ontario.

Freedom of Information requests were filed in March 2017 with the Sudbury hospital Health Sciences North for documents relating to the new controversial medical service, which became legal in Canada in June 2016.

The Ontario government then amended the Freedom of Information Act in May 2017, banning the release of any information relating to medical assistance in dying. 

But because the CBC request was in a few months before, it fell into a rare gap in the law. 

Health Sciences North's initially responded to CBC's request saying it couldn't "confirm or deny" whether these documents existed, arguing that it could infringe on patient privacy and employee safety, even though the requests specifically stated that all personal information should be excluded. 

CBC appealed to the Information and Privacy Commissioner of Ontario, which ruled against Health Sciences North in June 2018.

The hospital then said that it had no records that could be released without violating patient privacy, but then later decided to release about a dozen heavily redacted emails and other documents. 

"It got very complicated. It was very gray," says Health Sciences North's manager of privacy and information security, Nancy Andrews.

"We want to be open, we want to be transparent, but we're always going to put the patient first."

​The emails released by Health Sciences North show hospital staff scrambling to figure out how to handle requests from patients who want to end their lives and which hospital brass need to be notified.

At one point, there is also some confusion about whether or not a patient has made a request for an assisted death.

Clinical bioethicist Mary Huska writes one day about a "very serious request" that made the staff "naturally upset."

In an interview with CBC, she says those were likely from the early days of medical assistance in dying, when requests started coming in shortly after the law passed but before a process could be nailed down. 

Huska says it was something the general public would not have noticed. 

"We always said it looked like a tornado behind and they were in the eye where it was nice and calm," she says. 

"We had a process, we just had to write it down at the same time we were learning it."

"Now of course it's pretty streamlined, it's a set process, things go smoothly, we don't see any issues like that any more," says Huska.

The documents don't provide much insight into how many requests are received and how they are handled, other than a largely blacked out chart that indicates that at least one request was denied.

Huska says about 75 per cent of the requests received at Health Sciences North don't end with a medically assisted death.

She says many patients lose the capacity to follow through with their initial request, some change their mind and some "after they get approval, a lot of patients die."

Huska also says sometimes it isn't clear whether a patient is requesting a medically assisted death, or perhaps some other kind of pain relief. 

Andrews says even though the medically assisted dying law passed almost three years ago, "this is still early days" when it comes to informing the public about how it is working.

She points out that hospitals weren't covered by Freedom of Information laws in any way until 2012 and the internal culture is still adjusting to that.

Huska says the coroner's office is publishing figures on how many medically assisted deaths there have been in different regions of the province and as of Nov. 1, physicians are required to report more detailed information to Health Canada.

But critics still say that without access to information showing how the system is working day-to-day, the public will not be able to have a proper debate on this controversial issue.