When Canadians saw the video from Donald Low pleading for physician-assisted death, it sparked a nationwide conversation on the issue. The public had grown used to seeing Mount Sinai Hospital’s microbiologist-in-chief at press conferences, poised and explaining how Toronto was battling the SARS outbreak.
But in this video, he is terminally ill with a brain tumour. Almost deaf and with one eye closed, he talks calmly about his own, imminent death. “What the end is going to look like, that’s what’s bothering me the most,” he says.
He asks for Canada to introduce assisted death options for terminally ill people, citing examples of other places worldwide that have done the same. “A lot of clinicians have opposition to dying with dignity. I wish they could live in my body for 24 hours, and I think they would change that opinion,” he says.
Low died eight days later. In his obituary, his widow, Maureen Taylor, wrote: “In tribute to Don, please advocate for the legalization of assisted dying in Canada.”
Less than a year later, that vision is closer to being realized. Quebec has passed a bill that will allow doctors to help some terminally ill patients die. And a case in front of the Supreme Court of Canada this fall could make physician-assisted death and euthanasia legal across Canada. But the debate surrounding the issue is far from over.
Changing the laws in Canada
Quebec passed Bill 52, which allows for euthanasia, in early June of this year, by a 94-22 vote. It doesn’t come into effect until 2015, to give the government and doctors time to get the required policies and infrastructure in place. The bill allows Quebecers to have medical help dying, as long as they have “an incurable serious illness” and an advanced, irreversible decline in their abilities, and are at the end of their life. They must also be in constant, unbearable physical or psychological pain that cannot be helped. And they must be adults who are capable of consent.
Physicians will be responsible for making sure the patient meets these requirements, as well as getting a second opinion that confirms it from an independent doctor. They also have to make sure the request is made freely, inform patients of other treatments or therapies, and verify the patient’s wish at what the bill calls “reasonably spaced intervals.”
Doctors who don’t believe in euthanasia won’t be forced to perform it, but they will have to refer patients to a physician who is willing to. The system will be monitored and reported on by a provincial, arm’s length commission made up of doctors, health-care professionals, a jurist, an ethicist and a member of the public. It will advise the minister, report on end of life care every five years, and review every physician-assisted death to ensure doctors have complied with the rules. Institutions will also report on end of life care to their boards, including the number of requests for euthanasia and the number of times it was administered and refused.
The bill calls this end of life care. That positions it as part of health care, a provincial jurisdiction. But if it was challenged, the courts could see it as conflicting with the federal Criminal Code.
At the same time, those very laws may soon be struck down. This fall, the Supreme Court will reopen the Carter v Canada case. Kay Carter, who had spinal stenosis, and Gloria Taylor, who had ALS, filed a case with the B.C. Civil Liberties Association and a family physician in 2011. It contends that medically assisted death should be available to incurably ill, mentally competent adults who are not clinically depressed. It’s an issue the Supreme Court has been considering since Sue Rodriguez brought her case to the court in the early 1990s.
The BCCLA argues the current laws are “unconstitutional because they deny individuals the right to have control over choices that are fundamental to their physical, emotional and psychological dignity and restrict the liberty of physicians to deliver end of life care to incurably ill patients.”
The federal government counters that the laws protect people. “It is our government’s position that the Criminal Code provisions prohibiting physician-assisted death and euthanasia are in place to protect all persons, including those who are most vulnerable in our society,” federal Justice Minister Peter MacKay said in a statement.
Parliament could act quickly if the Supreme Court rules in favour of assisted death, thanks to MP Steven Fletcher’s two private members bills. One would change the Criminal Code so physicians can help patients die, and the other would establish a Canadian Commission on Physician-Assisted Death.
Worldwide, an increasing number of jurisdictions are legalizing physician-assisted death, where doctors prescribe a lethal dose of medication that patients take themselves, and euthanasia, where doctors end a patient’s life. The terms are controversial, with some preferring physician-assisted suicide and Quebec’s legislation using the broader “end-of-life care”; we’ve used euthanasia and physician-assisted death, following the Canadian Medical Association’s lead.
Quebec’s law allows only for euthanasia, but in Europe both physician-assisted death and euthanasia are legal in The Netherlands, Belgium and Luxembourg. Each country has its own regulations for who qualifies, but all require patients to have a disease that won’t improve, be suffering unbearably and offer voluntary consent. Switzerland allows assisted death for people who aren’t residents, making it attractive to some Canadians who have flown there to die.
Closer to home, some U.S. states have also legalized physician-assisted death. Oregon, Washington and Vermont require people are adult residents who are competent and expected to die within six months. Patients must make two requests, 15 days apart, and their physicians can request a psychiatrist consult if they feel it’s necessary. A judge also recently ruled that people in New Mexico have a right to “aid in dying.”
The public-physician divide
Public support for some form of assisted death is high: a 2012 Angus Reid Poll found 80% of Canadian respondents backed it under certain conditions. Another in 2013 found 86% of Quebec respondents wanted it, following a 2010 survey that found the highest levels of support in Quebec at 78% and the lowest in Alberta, at 48%.
But those numbers are lower among doctors. This may be because they’re hesitant to approve of something without knowing the details. “Doctors don’t know what the rules of the game would be,” says Udo Schüklenk, chair of The Royal Society of Canada’s Expert Panel in End-of-Life Decision Making. “It’s understandable that they would be reluctant.”
Physicians may also be worried that they may have to take part – though in all jurisdictions where assisted death is legal, there is the right to conscientious objection. And there are logistical issues that would follow. “Our group has started to have these kinds of discussions already in anticipation that the legislation might change,” says Sandy Buchman, a home-based palliative care physician who works with the Temmy Latner Centre for Palliative Care at Mount Sinai in Toronto.
The Quebec Medical Association approved of Bill 52. But a 2014 position statement from the Canadian Medical Association on euthanasia and physician-assisted death came out against both options. Before either are considered, the association asks for an expansion of palliative care services, maintaining and strengthening suicide-prevention programs, and a study of medical decision making near end of life.
The ethical issues
Proponents of euthanasia and physician-assisted death often focus on autonomy. “When you consider who is the best person, place or thing to make an informed decision about how to end your life, I don’t think it’s the state’s decision, I don’t think it’s a religious body’s decision. I think it’s an individual decision,” says Wanda Morris, CEO of Dying with Dignity.
That’s connected to withholding and withdrawing treatment. Some argue that “we allow people to refuse treatment when the known consequence is death, and there isn’t a defensible basis for drawing a distinction between withholding and withdrawal on the one hand, and assisted suicide and euthanasia on the other,” says Jocelyn Downie, law professor at Dalhousie University. She sees assisted dying as a spectrum, with withholding and withdrawal on one end, and euthanasia at the other.
“I think [physician-assisted death and euthanasia] is an important option that should be available to all Canadians,” says James Downar, critical care and palliative care staff physician at the Toronto General Hospital. “I think it’s important to recognize that there are types of suffering that we do not have the ability to treat. There are dying patients who have a very low quality of life from their perspective, and sometimes only death would end their suffering.”
On the other side, a common concern – and one that the CMA makes – is the slippery slope argument. It’s the concern that vulnerable people may feel pressured into deciding to end their lives. But evidence from other jurisdictions provides a counterpoint. “In none of those jurisdictions [that have decriminalized physician-assisted death] would you find any threat to people who are vulnerable,” says Schüklenk, pointing out that in European countries, the average person who uses these programs is male, with middle to upper class income and education. “By any stretch of the imagination, this is not what we would understand commonly as vulnerable people,” he says. In Switzerland, people who choose assisted death are more likely to have more education, live in urban areas, and have a higher socioeconomic status. A study of those who participated in the Death with Dignity program at the Seattle Cancer Care Alliance found the average participant was white, male and well educated.
Others think physician-assisted death demeans the disabled. The most commonly requested reason for it is not pain, but disability, which is “really concerning,” says Margaret Cottle, vice-president of the Euthanasia Prevention Coalition. “That is saying disability equals indignity, and what does that say to the rest of our citizens who are living with disability?”
The most common reasons people in the Seattle Death with Dignity program gave for wanting to die was “loss of autonomy (97%), inability to engage in enjoyable activities (89%), and loss of dignity (75%).” Similarly, of the 72 people who received a prescription for lethal medication in Washington State in 2010, 90% were worried about losing their autonomy and 64% about losing their dignity.
Jessica Simon, head of the division of palliative care medicine at the University of Calgary, is also concerned about those reasons. “I worry that people fear dependency,” she says. “The act of dying by definition is a time when we become dependent on others, and I think it’s much more important that we develop ways to support people through that dependency … than seeking to quickly dispose of that time.”
The impact on palliative care
Palliative care doctors, including Bernard Lapointe, Manuel Borod and Balfour Mount, have come out against Quebec’s legislation, saying most palliative care doctors are against it and that it blurs the lines between palliative care and euthanasia.
“I think people don’t really have a good grasp on what the difference is between palliative care, palliative sedation, physician assisted death and euthanasia,” says Dori Seccareccia, a palliative care doctor at Sunnybrook. “I think people are voting for, help me when I’m suffering, I want to make sure there are as many options as possible when I’m suffering. And if palliative care isn’t an option, we worry that people are going to vote for euthanasia or physician-assisted death, because they think that’s all there is to help them.”
There’s also the fear that euthanasia and physician-assisted death will distract from the need for more palliative care in Canada. To counter this, many jurisdictions have addressed end of life care as a whole when legalizing physician-assisted death. In Quebec, the new legislation includes the right to palliative care. That would be difficult to execute if legalization across Canada comes from the Supreme Court, since palliative care is a provincial jurisdiction.
Many palliative care doctors believe continuous palliative sedation therapy, where a patient is sedated for the last few days or weeks of life, is an option that removes the fear and pain of dying for most people. Buchman remembers a patient who had ALS and requested he hasten death after she was “locked in” – unable to communicate or move in any way, while remaining aware. They decided to use continuous palliative sedation therapy when she was at the end of her life, and when she requested it by blinking twice. Buchman feels that she had a comfortable, peaceful death. But “if she would have had the option to hasten death, she probably would have taken it,” he says.
And some worry physician-assisted death would erode trust in palliative care doctors. “Introducing the idea that a physician can care for you when you’re dying but could also actually hasten your death, you’re changing the fundamental relationship between physicians and patients,” says the University of Calgary’s Simon.
Dr. Low’s wife, Maureen Taylor, says he had excellent palliative care, but it wasn’t enough. He ended his life sedated at home. “I slept next to my husband for eight days where he was basically in a coma…. He couldn’t feel pain, he couldn’t feel hunger, but he also couldn’t talk to his family. He had to be diapered, which was something he never wanted. It was like a living corpse in your house,” she says, adding that watching him gasp for breath under sedation was awful for the family. “I’d turn it around and ask, who benefited from Don having to live the last two weeks of his life like that?”
Buchman thinks Canadians need to have a more thorough discussion about palliative care and death before changing the laws around physician-assisted death.
“I don’t think we’ve had those kind of discussions yet,” he says. “And I think the time is right.”