How necessary is secrecy in assisted death?
Physicians join privacy commissioner’s pleas for transparency about hospitals
There are more people in on the secret than you’d imagine.
The scene is set in a hospital, somewhere in Ontario. A pharmacy technician carefully measures out the medication. An orderly whisks it down the hall. A translator may be sought, and a physician arrives at the patient’s room.
Legally, any one of them can refuse to participate in the physicianassisted death that’s about to take place, recognized for a year now as a person’s legal right in Canada.
But outside the medical facility, no one has to know what’s happening — and that’s sounding off alarms for Ontario’s most senior privacy watchdog.
In his annual report last week, privacy commissioner Brian Beamish took aim at the Medical Assistance in Dying Statute Law Amendment Act, or Bill 84, which became law in Ontario last month.
The act, in part, is a green light for secrecy. Any information that could identify hospitals, long-term care homes or hospices that offer medically-assisted death is exempt from freedom of information laws.
“The government views protecting facilities as a logical and justifiable extension of protecting clinicians,” health ministry spokesperson David Jensen wrote in an email to the Toronto Star. There’s nothing in Bill 84 to explicitly prevent a facility from “proactively releasing their policies,” he added.
“The ministry is not considering any changes at this point.”
To Beamish, that decision veers alarmingly off-path from transparency and accountability. Before the bill became law, he recommended amendments that kept the names of physicians anonymous, but the names of facilities public.
“Information should be public unless there’s a really good reason why it shouldn’t be,” Beamish said.
In this case there was no evidence presented by legislators to suggest any reason why hospitals and care facilities should be exempt from disclosing their practices.
The same concern was presented by Hamilton Health Sciences ethicist Andrea Frolic at a committee meeting about the bill in March. Frolic praised the protection of doctors, but questioned why publicly-funded facilities could draw a dark curtain over their practices.
“Information-sharing with the public is essential to patients’ informed decision-making,” she told the room, recommending that facilities disclose whether they grant assisted-death requests.
But when the bill passed, so, too, did the institutional protections.
Dr. Gerald Ashe, a family physician in Brockville, is onside with Beamish’s plea. Over the past year, he’s openly helped terminal patients end their lives by achieving what he calls “a good death.”
“I’ll be honest with you, I don’t agree that publicly-funded institutions should have the right not to offer it. But this is so much beyond that,” he said.
Though he understands that individual physicians may find comfort in anonymity, he says he’s faced zero criticism for his involvement.
“I don’t think there’s any danger to physicians,” he said. “Individuals who are participating and not putting their name out there are just kind of finding their way.”
To him, an institution doesn’t need the same level of protection.
In Toronto, the University Health Network is trying to set a standard for transparency — whether or not the provincial government requires it — by publicly declaring its willingness to perform assisted deaths.
Dr. Madeline Li, a physician with the network, had already begun writing the framework for the hospitals within the network — Toronto General, Toronto Western, Princess Margaret, Toronto Rehab and the Michener Institute — before federal legislation passed to allow assisted deaths.
“The time for debate is over. This is a patient’s right. And as an institution, we’ve decided to provide it,” Li told the Star.
Even if a facility elects not to provide assisted death, she said, it’s important to make that clear for patients.
“Other institutions aren’t so much not being transparent,” she said. “I think it’s more that people are just unprepared.”
Unlike Ashe, health-care workers within the University Health Network have seen backlash. Dr. James Downar, in particular, faced criticism after speaking out about assisted death.
“He was worried about emails within our firewall that might be tapped,” Li said.
A palliative care nurse was approached and asked, “How could you do this?”
Li herself has faced questions about how she could participate in the process. But, she said, forming an open and comprehensive policy makes answering such questions much easier.
“I have no difficulty defending our position,” she said. “And that’s part of what plays into being transparent. There’s no secrets. There’s no shame.”
Information about which hospitals and facilities offer assisted death should be public, unless there’s a really good reason why it shouldn’t be, says privacy commissioner Brian Beamish.