What is ‘advance directive,’ the principle at heart of Ottawa’s new MAID law?

The federal government is set to update the law on medical assistance in dying (MAID) in Canada, permitting Canadians to decide whether they want to end their lives ahead of time.

On Wednesday, Justice Minister Sean Fraser and Health Minister Marjorie Mitchel are scheduled to reveal more details about Canada’s new MAID law, which will include changes to include changes to the Criminal Code to ensure that a doctor who provides medical assistance in dying to someone who is eligible on an advance directive “will not be treated as a criminal in Canada going forward.”

Speaking in Ottawa earlier this month, Sean Fraser said the government will “grant access to medical assistance in dying to people who have provided consent at a time when they still have capacity but know that they have been diagnosed with an illness that will take that capacity from them subsequently.”

This is sometimes referred to as an “advance directive” or “advance request” in medical parlance.

It often involves a mentally competent person making a written request for MAID, with the intention that it would be honoured later, if and when they lose the capacity to make the decision for themselves: for example, in people suffering from worsening Alzheimer’s or dementia.

“That means, specifically, I give my consent in advance in this capable state to receive medical assistance in dying (at a later time),” said University of Toronto bioethicist Kerry Bowman.

In 2024, Quebec became the first, and so far only, province in Canada to allow residents to authorize an early request for MAID.

In Quebec, only a person who has been diagnosed with “a serious and incurable illness leading to incapacity to give consent to care” may give advance request for MAID. They must also identify a physician or specialized nurse practitioner who agrees to assist in the process.

Bowman said the principle of advance directives is “profoundly ethically complex,” adding that it can be hard to predict how a person’s disease will progress.

“The concern is you’ve almost got a stranger making a decision for a stranger. Do we really know ourselves in that state?” he said.

The Quebec law allows a patient to withdraw or modify their MAID request. However, the question of withdrawing consent becomes complicated when some patients have “no capacity to withdraw” in the advanced stages of illness, Bowman said.

“I’m not necessarily against it. But I do think most of us are enormously underestimating how ethically complex this is,” he said.

Advocacy group Dying With Dignity Canada, which has long advocated for advance directives, says the federal government’s approach is “fundamentally flawed” because it downloads implementation to the provinces and territories.

“At best, this legislation will create a patchwork of systems across the country, thus further increasing inequity in MAID access, instead of a federal framework that would ensure that all people across Canada could have access to advance requests for MAID if they are eligible,” Helen Long, the group’s CEO, said in a statement.

“At worst, some people in Canada may never have access to advance requests in their province or territory,” she added.

Equitable access to advance requests is fundamental to death with dignity, Long said.

“Without the option of an advance request, Canadians are forced to make an impossible choice: die earlier than they want to in order to ensure they have capacity to consent… or risk losing capacity and be forced to live in a situation they would find intolerable,” she said.