Alberta doctor, widow discuss medical assistance in dying laws as roles reviewed

Federal Health Minister Patty Hajdu was in Calgary Friday for consultations about Canada's Medical Assistance in Dying (MAID) laws, and though sessions were closed to the media, recent conversations surrounding MAID are prompting Albertans to speak openly about loss and the legal system.

Last September, the Superior Court of Quebec ruled that it was unconstitutional to limit access to MAID for people nearing the end of their lives.

Though the ruling only applied to the province, it provided a catalyst for the federal government to review its assisted dying laws, and findings could prove consequential across the country.

To evaluate whether the current laws are too restrictive, the government has initiated online consultations that are open to the public and in-person discussions between federal cabinet ministers and medical experts across the country. 

At a press conference with Mayor Naheed Nenshi on Friday, Hajdu said more than 100,000 Canadians had responded to the survey, and roundtable consultations with practitioners have been tremendously helpful.

She also told reporters that after the consultations are completed, a report of the findings will be released.

"[MAID] is a very serious piece of work," Hajdu said. "It's law, but it's also, in some ways, deeply philosophical, and I'm just really grateful to the people who are coming to the table and sharing their experiences."

Government should be 'thinking about the people who want to die'

One person speaking about their experience is Calgary widow Cynthia Clark, who saw her husband through the process of medically assisted death last summer.

She said she is grateful MAID's laws are getting a public evaluation — but admits she worries the questionnaire is focused too much on safeguards against accidental death, and isn't focused enough on the needs of patients.

"I'm really glad the government's reaching out to see what people's opinions about this are," Clark told the Calgary Eyeopener on Jan. 16.

"[But] I was a little bit frustrated as someone who's accessed the system ... I would like to see them thinking about the people who want to die."

Clark says her amendments would include making sure patients have timely access to a service that she emphasizes has been made legal.

"There are a lot of people who would like to access MAID who missed their window, or don't get their chance, or are fighting for the right to be able to access it, because they don't fall into the criteria of imminent death," Clark said.

'We went into a panic'

In Alberta, reasons that people are deemed ineligible for MAID include diagnoses related to mental health, loss of competency, and judgments that death is not reasonably foreseeable.

The government also stipulates that certain criteria must also be met — for instance, those seeking assisted death must be over 18.

Other stipulations include criteria that a "grievous and irremediable medical condition" must be suffered and a 10-day reflection period must be waited out before the service is administered.

For Clark, some rules regarding MAID were so restrictive, it compounded stress during an unimaginable time.

As her husband, Horacio Bouzas, came to grips with a terminal brain cancer diagnosis, she said MAID was always a part of the conversation.

"All along, he talked about [how] that's the way he wanted to go when he died," Clark told the Calgary Eyeopener.

"So to then add 10 days of waiting to make sure you're sure, and then two appointments when the doctors can come — it's a weird place to live in, like living on the fence. You're neither here nor there."

Shortly after the appointment was made for Bouzas' medically assisted death, Clark said her husband began to deteriorate. 

And because of MAID's 10-day reflection period and consent requirements, the decline sparked immediate alarm.

"We went into a panic that we still had four more days to meet this deadline," Clark said. 

"I spent the entire day on the phone to the MAID office and to our palliative care nurse basically begging anybody to try to find someone else or ... looking at my husband, and these pitiful, puppy dog eyes just begging me, watching this opportunity potentially slipping away."

Current stipulations 'kind of cruel,' physician says

According to Tom Rich, an emergency room physician and MAID assessor and provider, situations like Clark's are not infrequent.

"The number one fear that [people] have ... is, 'In those 10 days, am I going to deteriorate to the point where I can't give informed consent just before the procedure?' And frankly, I think that's kind of cruel," Rich said.

"You've got someone that qualifies, they want the procedure, they're informed about it, and then you're asking them to wait — with the risk that if they deteriorate and can't provide informed consent just prior. And then, they don't qualify anymore."

Rich said a possible amendment to MAID is the allowance of advance directives from those requesting a medically assisted death.

But Rich also acknowledges this could present unique and complex challenges — for instance, how far in advance a directive could be given.

"One of the key requirements is really personal: that you feel that your life is not a livable state," Rich said.

"If you deteriorate to the point where you can't make that decision, how does someone know on your behalf? Or have you written it down clearly enough that you still qualify?"

MAID decision 'generous,' Clark says

For her part, Clark believes that the possibility of an advance directive, or the designation of consent to others, are options that should be explored.

Insights like these, she says, are one of the reasons she wishes the government's inquiry looked to people like her — or people like her husband — for more guidance. 

"The average Canadian hasn't necessarily used the system yet, or needed it, and I think that it would be prudent for them to look at people who have either successfully or unsuccessfully accessed MAID ... and look at changing their legislation from those people's perspectives," Clark said.

"Otherwise, I think that you're getting a lot of philosophical or ideological support or opposition to a concept, as opposed to an experience."

Clark said that for her husband, access to MAID gave her family a gift.

"My husband lived a really full life, and when he found out he was sick he made some goals for himself, and we completed them," Clark said. 

"And I think the most generous thing that he ever did for all of us was to quit while it was still fun."

Denials 'incredibly difficult' to issue, doctor says

According to Alberta Health Services, the most cited reasons for patients to request MAID are cancer, multiple sclerosis, amyotrophic lateral sclerosis and advanced lung disease. 

Since its 2016 legalization, 958 Albertans have been granted a medically assisted death, while 190 have been denied. 

The rates suggest that denials make up 16 per cent of requests, though Rich said these statistics seem too high — he believes the numbers are inflated by inquiries.

Even so, he maintains that denying MAID to a patient is difficult.

"It's incredibly challenging," Rich said. "They're coming to you because they feel their life is not in a livable state, and whatever treatment is being offered for them is not acceptable for them.

"[But] we have very strict eligibility criteria, and you know, you sympathize with them ... [but] that's how the legislation is written right now. So we can't do that."

Rich said he hopes Canadians pay attention to the conversation surrounding MAID and take the time to engage with the survey.

And they should care, he said, because it's legislation that very well could impact them.

"It may not apply to you, you may not be thinking about it," Rich said. "But when it does apply to you, you probably don't want other people telling you what you can or cannot do."