A question of life & death

Balfour Mount was a young cancer surgeon in the 1970s when a research project with a colleague altered the course of his career — and his view of the current debate about the right to die.

In preparing for a presentation, the two physicians decided to investigate how people were dying in Montreal’s Royal Victoria Hospital, where they worked.

“Our patients died badly, essentially in hallways — I’m thinking particularly of patients with malignant diseases,” Mount remembers.

Investigating further, he visited some hospices in Europe, and, in 1975, with the approval of René Lévesque’s PQ government, he opened Quebec’s first palliative care ward — in fact, that is when the term “palliative care” was first used.

“For 40 years, I have been sitting at the bedside of dying patients. And for 40 years I have been talking to grieving families. So it has had a profound influence,” explains Mount.

The disease to which he dedicated his career did not spare him. He survived testicular cancer in his early twenties. In 2000, struck by cancer again, he had his esophagus removed. And he survived another bout with cancer seven years later.

Now 74, breathing with the aid of a tracheotomy, he says he is lucky to be alive. Still in his home in the Montreal neighbourhood of Notre-Dame-de-Grace, he is writing a book chronicling three generations of his family. And he does not hide his strong opposition to euthanasia and assisted suicide.

“It’s a very big mistake,” he says. And I’m not saying that for religious reasons. I’m saying it because I’m a human being. And I know that the answers are there.”

He believes we can find those answers in the palliative care system he pioneered; in medicine’s ability to manage pain “to a remarkable degree;” and in the duty of physicians to treat their patients — not help them put an end to their days, which he finds contrary to the Hippocratic Oath physicians take before they can practice medicine.

“Once you’ve done that, you’ve changed the [doctor-patient] relationship. You’ve changed everything. And you can never put it back. It’s like the genie. You can never put it back in the bottle.”

Freedom of choice

Twenty years after the Supreme Court of Canada ruling in Rodriguez v. British Columbia (Attorney General), the debate over euthanasia and physician-assisted suicide has returned. And clearly, not everyone shares Mount’s opinion.

The decriminalization of physician-assisted suicide has the support of the majority of Canadians — and even more Quebecers — according to the surveys that are released on a more or less regular basis.

In the wake of an extensive public commission, the Quebec government tabled a bill that would allow physician-assisted suicide. Bill-52 was coming up to a vote just before the provincial election was called, but Premier Philippe Couillard had, as of this writing, promised to quickly re-introduce the bill.

In Ottawa, the Supreme Court of Canada will soon be hearing the case of Carter et al. v. Canada, an appeal of B.C. Court of Appeal decision that overturned a ruling which took a stand against Rodriguez. British Columbia Supreme Court Justice Lynn Smith had ruled that the Criminal Code prohibition against assisted suicide is unconstitutional. Chief Justice Beverley McLachlin, the only member of the 1993 high court bench who is still sitting, had sided with of the four-judge minority in Rodriguez.

To many people, like Dr. Donald Low, it’s a matter of choice.

The Toronto microbiologist came to prominence during Ontario’s SARS crisis, when he showed up regularly on television to inform and reassure the public.

In September, he caused a commotion with a video posted on YouTube. Low was barely recognizable, with one eye closed and the other one taped open, his breathing laboured. And he was arguing for the right to die with dignity.

“I am going to die,” he said. “And what worries me is how I am going to die. Am I going to end up being paralyzed? Have to be carried from the bathroom to the bed? Am I going to have trouble swallowing? Will I be able to take in food?”

The video was taped on a Tuesday. On Thursday Low was confined to bed and put under palliative sedation. He died at home six days later, with his wife at his side.

“Palliative sedation means that Don did not feel pain and, we hope, did not feel any discomfort,” says his widow, Maureen Taylor. “But he was like that for six days. And in that time, all of his bodily functions continued to happen.” The things that Low had feared would happen came to pass, Taylor said, while the things he’d wanted — such as being able to communicate with his family until his death — did not.

Had he been able to choose the timing of his death, it would have no doubt been the night after making the video, Taylor believes. “So we’re talking probably seven days before his death. That’s when he would have chosen to go.”

Taylor is categorical: she believes in palliative care, and she never saw her husband’s illness as a burden, neither for herself nor her family. “I just think it should be a choice. That’s all,” she says.

A slippery slope

But to many opponents of physician-assisted suicide, that choice simply does not measure up against the risk it raises for society as a whole.

That is also the federal government’s position: “It is a very slippery slope when one starts to contemplate the various scenarios and the range of circumstances in which people can find themselves,” federal Justice Minister Peter MacKay said last September.

Mount is also very conscious of this argument. He gives the example of a patient who was admitted to the Royal Victoria Hospital several years ago, who had asked him to put an end to it all. After hashing and re-hashing the problem in his mind for several days, “I sat down beside him,” Mount says. “I looked him in the eye and said, ‘There’s some things that just don’t hang together for me…’ ”

He asked his patient how a respected accountant, who had contributed to society and supported his family all his life, could want to give up just when he himself needed help. “You don’t look like a man who wants to die. You look like a man who wants to live,” he told him.

“And this late 50s, early 60s chartered accountant started to cry. And he said: ‘you’re right. But you know, I don’t want to be a burden on anyone’,” Mount remembers.

Mount is convinced that this feeling would spread if assisted suicide or euthanasia were legalized. “The people who may feel like a burden are the elderly in every nursing home, the people with failing memories and early Alzheimer’s… It’s anybody in society who feels they don’t measure up to the productivity that gives us value in our materialistic society.”

The problem is especially acute given the aging population, he continues: “It’s cheaper to kill people. And the pressure to do that is getting bigger and bigger.”

What role should the CBA play?

In February, the Canadian Bar Association presented a panel discussion on end-of-life decisions. One of the panellists, Prof. Jocelyn Downie, argued that the slippery slope fears are greatly exaggerated and that they don’t bear out when you look at the systems other countries have adopted.

“The data from over 20 years in the Netherlands, for 14 years in Oregon, and so on, shows that, in fact, it’s not the vulnerable that are accessing assisted suicide and euthanasia. It’s a picture of power and privilege when you look at who actually accesses it,” says Downie, who teaches at Halifax’s Schulich School of Law.

In 2011, Downie participated in a study on end-of-life decision making conducted by a group of experts from The Royal Society of Canada. After analyzing data from other countries, the researchers concluded that “(d)espite the fears of opponents, it is … clear that the much feared slippery slope has not emerged following decriminalization, at least not in those jurisdictions for which evidence is available.”

The CBA panel discussion was held in part to provide guidance for the association on the necessity of taking a position in a debate polarizing Canadian public opinion. Opinions here are also divided.

Downie, for one, believes that the CBA has an important role to play.

Lack of clarity in the law “hurts patients. It hurts health care providers. It doesn’t benefit anybody,” she said. “The CBA is in a great position to help clear some things up and to move the law forward with respect to the entire spectrum of end-of-life care.”

Panellist Hugh Scher, who acts for the Euthanasia Prevention Coalition in the Carter case, said the CBA could have a role to play if Parliament were to decide to study the question — ensuring that the principles of natural and procedural justice are followed, for example. But he added, “I would suggest at this point, there isn’t such a role for the CBA in terms of the issue of basic policy.”

While Scher believes that Parliament, and not the court room, is the place to decide this  “complex public policy issue,” he also believes that MPs have clearly and unequivocally refused to go down the road of legislative change.

No government has attempted to address the question in the last 20 years, but a dozen private member’s bills have been tabled in the Senate or the House of Commons by people like Sharon Carstairs, Thérèse Lavoie-Roux and Svend Robinson. In April 2010, a bill introduced by then-Bloc Québécois MP Francine Lalonde, was defeated by a vote of 288 to 59. In March Manitoba MP Steven Fletcher, a quadriplegic following a 1996 car crash, introduced two private members’ bills — one to decriminalize doctor-assisted death under restricted circumstances and one to establish a commission to monitor the practice.

Downie disagrees with Scher about what the earlier defeats mean.

“I don’t agree with describing the failure of the various bills as a repudiation of the legalization of assisted suicide and euthanasia. Because they’ve been bad bills,” she argues.

Dr. Angela Genge heads up the Clinical Research Unit at the Montreal Neurological Institute. She specializes in neuromuscular diseases, including ALS, or Lou Gehrig’s Disease. In her practice, Genge is often faced with requests from patients who want to end their lives.

The third member of the CBA panel, she described the existing rules as being too vague, and ill-adapted to today’s reality.

“Because of (the) capacity of medicine to keep people alive at all costs, many of these other issues about the right to die, right to live, level of suffering, become real issues in a clinical discussion, and real issues at a hospital level,” she said.

“It is impossible to leave physicians and patients in the current dilemma.”

In Genge’s view, court involvement is now inevitable; and 20 years after the Rodriguez case, it seems that it will be up to the Supreme Court of Canada to decide the debate, for both Canada and Quebec.

“The law will be challenged in the courts. So at the end of the day, whether you like it or not, you are involved,” Genge told the audience of lawyers and other jurists gathered in Ottawa.

“We need your guidance.”