Features  Locked In

Nicholas Cameron on why the Canadian right-to-die debate matters

Warning: This article contains potentially triggering descriptions of suicide and medical experiences.

By the end of it, Tony Nicklinson could only blink. Having experienced a severe stroke seven years ago, Nicklinson suffered from locked-in syndrome, a condition in which the patient is cognitively aware but suffers from paralysis of the body except for the eyes. Relying on a sophisticated computer that tracked his eye movements so that he could tell a British high court why he deserved the right to die, Nicklinson said his life had become “dull, miserable, demeaning, undignified, and intolerable.” And when Lord Justice Toulson rejected his appeal, Nicklinson’s anguish was so visible that, despite being paralyzed from the neck down, his entire body shook from crying. Emotionally devastated, Nicklinson “went downhill quickly,” according to his family. He would refuse food for six days, contract pneumonia, and then – finally –  pass away at 10 a.m. on Wednesday, August 22, 2012. He was 58 years old.

For as long as we’ve been willing to discuss it, the debate surrounding euthanasia and medically-assisted suicide has driven right to the ethical heart of our society. On the one hand are the supporters, who argue that prolonging someone’s suffering and refusing to grant them authority over their own bodies is inhumane. On the other hand are the opponents, who insist that institutionalized assisted suicide will lead to elder abuse and that, instead, palliative care units should be improved. Now, twenty years after Canadians were first confronted with the issue, the two sides have been given an opportunity to pitch their arguments to the public and resolve the right-to-die debate in Canada.

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We should first hash out the terms “assisted suicide” and “euthanasia.” “Assisted suicide” – or less grimly, “medical-aid-in-dying” – occurs when a patient intentionally ends their life with the assistance of another individual. For example, a patient is unable to inject a toxin into their system or lift their arms to put a pill into their mouths and they require another person’s aid. Or, assisted dying could also take place when a perfectly mobile patient simply wants a physician to oversee the process. Euthanasia occurs in the event that someone other than the patient ends the patient’s life. Here, an example would be if a patient wishes to never live in a vegetative state, and requests a doctor to euthanize them should they become incognizant.

By way of historical background, we see that the right-to-die debate in Canada has ebbed and flowed. In 1972, attempted suicide became no longer punishable under the Criminal Code of Canada. Over the next decade, a handful of court cases determined that a mentally competent patient had the right to refuse treatment. Citing section 15 of the Canadian Charter of Rights and Freedoms, which states that individuals cannot be discriminated against based on physical disability, ALS patient Sue Rodriguez claimed that her rights were being violated by being refused access to assisted dying.  If she were an able-bodied person, she reasoned, she wouldn’t face persecution for wanting to end her life. While the Supreme Court ultimately agreed with Rodriguez, twice, that her rights were being infringed, they insisted it was necessary to do so to protect against widespread abuse. After years of exhaustive legal battles, Rodriguez committed suicide illegally in 1994 with the assistance of an anonymous medical practitioner.

After the Rodriguez case, aside from a handful of “compassionate homicides” where the victim was often terminally ill and euthanized by a family member, Canadians had to look south in order to see the right-to-die debate played out in any meaningful way. Between 1990 and 1998, Dr. Jack Kevorkian would help an estimated 130 ill Americans end their lives and, subsequently, draw substantial public interest with his vitriolic critiques of the medical community. “My ultimate aim is to make euthanasia a positive experience,” Kevorkian would tell the media after his first patient, Janet Adkins, took her own life. “I’m trying to knock the medical profession into accepting its responsibilities, and those responsibilities include assisting their patients with death.” For his actions, Kevorkian would have his medical license revoked in 1991, be labeled “Dr. Death” by a divided American public, and found guilty of second-degree homicide in 1999 for assisting in ALS sufferer Thomas Youk’s death. Usually, the patient would use Kevorkian’s own machine to inject chemicals into their bloodstream under his supervision. However, in footage provided to 60 Minutes, Kevorkian administered the lethal injection to Youk. That injection, despite being fully consensual, was enough to sentence Kevorkian to 10 to 25 years in prison. He was released in 2007.

While Kevorkian was in prison, the world was given its first international euthanasia and assisted-suicide celebrity. On March 18, 2005, 15 years after having entered a vegetative state following a full cardiac arrest, a legal tug-of-war between Terri Schiavo’s estranged husband and her family ended with a court injunction that her feeding tube be removed. With no written statement about what she would have wanted to happen – which was, really, the true essence of the case – both sides of the right-to-die debate would lay claims to her voice. However, instead of delving into either side of the discussion, most news sources relied on tabloid spectacle to keep the story alive. Talking heads babbled over her (possible) eating disorder, protesters covered their mouths with red tape inscribed with the word LIFE, and a ten-year old boy was arrested for trying to bring her water. All the while, we allowed ourselves to forget that Schiavo was crawling toward, as the court insisted, a “natural” death. It would take 14 days without food and water until, finally, she died of severe dehydration. And when a television banner announced a few weeks later that Schiavo’s condition was irreversible and that large portions of her brain had been liquefied by the seven minutes it had been deprived of oxygen during her cardiac arrest, it was hardly talked about.

Now, after a relative lull in explicit discussion on the issue, there are two cases going through the judicial circuit that could produce the right to die in Canada. The first case involves Gloria Taylor who, in June, won a constitutional exemption so that she could be the first person in Canada to legally access assisted suicide. While Taylor’s victory was twice challenged by the federal government – indicating an interest on the part of the Conservatives to keep things the way they are – the British Columbia resident died on October 5 from a sudden infection, thereby unable to exercise her exemption. Though Taylor is gone, a larger case dubbed the “Carter Challenge” has been launched on the heels of her victory in order to revise the current legislation.

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For expediency’s sake, it’s probably best to measure the inadequacy of the anti-right-to-die movement by simply examining its claims. The hardest part in acknowledging the opponents of assisted dying is realizing that they are not evangelical half-wits, bunkered away in bomb shelters and donning tin-foil hats. Instead, Canadians have heard from people like Margaret Somerville – founder of the McGill Centre for Medicine, Ethics and Law – who, for the past thirty years, has been one of the most visible and outspoken opponents in the country of the right to die. In opposing euthanasia and assisted suicide, she often cites the need to improve the Canadian health care system to be better equipped with treating long-term patients.

“We know that if you give people access to good palliative care, the vast majority no longer wants euthanasia or assisted suicide,” claims Somerville. “And yet in Canada, at the moment, where we’re thinking of instituting this intentional killing of Canadians, we’ve got access to palliative care [for] around 14 per cent of the population … So, [this means we’re going to have] 86 per cent of the population who are going to be offered euthanasia and not palliative care.“

If nothing else, Somerville’s math reflects the main concern of right-to-die opponents who believe that minor legislative reform will lead to widespread euthanasia of non-consensual participants. As she explains in one correspondence, “I often ask people to ask themselves the question, ‘If we legalize euthanasia and assisted suicide now, how do you think your great-great-grandchildren will die?’” For Somerville, the right to die represents a ‘slippery slope.’ She points to Belgium, where euthanasia has been broadened to include those who were not admitted when the legislation allowing for medical-aid-in-dying was first enacted. She mentions the Netherlands, where parents have recently been given the ability to euthanize disabled children within a month of the birth. Examples like the latter do add a certain complexity to a citizen trying to grasp the ramifications of legislating the right to die.

However, as Wanda Morris (the spokesperson for the right-to-die group Dying With Dignity) points out, the slippery slope theory is inherently flawed. “A parallel example,” explains Morris, “is to say, ‘oh, my son has been caught shoplifting, so he’s going to [have] a life of crime, and he’s going to go to prison and he’s going to be killed there, and he’ll be dead before he’s 25.” Furthermore, when we recognize that there would have to be deliberate legislative revision for any definitions to change, we can see that the argument that just about anyone will be allowed to kill themselves does not hold water. The slippery slope argument is more revelatory of an opponent reacting to the expansion of euthanasia than any immediate danger posed by allowing the right-to-die. Because, as Morris argues, the legalization of assisted dying “clearly isn’t about [anyone] being assisted to die on demand, [it’s about] somebody who is facing the prospect of death being less harmful to them than life.”

Probably the strongest argument against the right to die is that it will lead to elder and patient abuse. To this effect, critics like Somerville claim that coercion on the part of family members will lead to unwanted euthanasia and patient death. She insists that there are “at least 500, or upwards to 2,000” unwanted cases of euthanasia in Canada each year, though I have had trouble locating this statistic elsewhere. Against this argument, the Carter Challenge sets up specific and rigid parameters for when and how assisted dying could occur. Only when the patient has signed a form, demonstrated consent to two physicians, and is accompanied by a witness, can the death be carried out. Elsewhere, such as in Oregon, at least one of the patient’s witnesses cannot be related by blood, marriage, or adoption, nor be entitled to any financial benefit from the passing. Even in the Netherlands, 50 per cent of all assisted dying requests are rejected out of extreme measures to safeguard against possible abuses or lack of conscientiousness on the part of the patient. Moreover, if we follow the argument against euthanasia’s potential abuses to its logical conclusion, we see that it is inherently hypocritical. If the current system of refusing a conscious patient the right to die and thereby forcing them to die a far more arduous and painful death isn’t understood as patient abuse, then what is?

Opponents like Somerville are right to point out the need to improve palliative care facilities, just as they are right to point out the need to improve psychological health for patients enduring the distresses of treatment. However, a failure of their stance is their insistence that assisted dying must be banned for all patients, rather than merely restricted.  As Morris explains, “the essence of the Carter Challenge is that you can never make anything foolproof, but you have to find a balance between [protecting] the weak and the vulnerable, and the rights of those who are egregiously ill and suffer terribly at the end of life. And the balance is way too far now at one end and we need to move it toward the middle.”

It is, at best, naïve to believe that because euthanasia and assisted suicide is illegal in Canada, terminally ill people will not kill themselves if they want to. Ideally, organizations like Dying With Dignity exist to provide information on ensuring a peaceful death. However, there are cases like the one Morris told me of a terminally ill woman who recently threw herself in front of a subway. What is being decided in the Carter Challenge is not whether assisted suicide or euthanasia will ever occur in Canada. Instead, it will decide to what extent we want to acknowledge that assisted suicide occurs, and whether Canada will set up specific parameters to make it more peaceful, legal, and medically sound.

Yet, there is another crucial issue that hardly gets mentioned in the right-to-die debate. For while the patient is often the central focus in the argument in favour of legalizing assisted dying, the importance of the death for their surviving family and friends cannot be understated. And, in order to hammer home that part more fully, I should probably tell you about how my father died.

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On the evening of March 12, 2005, my father passed away after a nine-month battle with esophageal cancer. Three weeks earlier, his cancer spread toward his liver and, as if unraveling, my father was slowly drawn closer and closer toward his end. Understanding this, my mother fought against hospital administration in order to allow him to return home to die.  And when each member of my family was given some time to talk with him, spend with him and then finally comfort him as he took his last breath, looked up and then retreated into himself, it was easier to accept because my father had been given, all things considered, the most comfortable death possible.

My dad was not euthanized, nor did he commit suicide with the assistance of anyone. Someone who opposes the right to die might tell me that my story is actually a celebration of what medicine is doing right, and how it can deliver a dignified death. But my father also didn’t suffer for months or years in constant, extended pain like he did during the last few weeks of his life. Three days after he died, Terri Schiavo’s feeding tube was removed. By coincidence, I ended up spending lots of time watching the Schiavo drama unfold and saw, for the first time, the difference between a comfortable death and an arduous one. One of the biggest insecurities for extremely ill patients is that their family and friends might be left solely with memories of them in treatment; that the illness might suffocate any understanding of the person who existed before the diagnosis. And if we are terminally ill, and can see our death coming around the bend, do we not deserve the right to establish some parameters around the very thing – sickness – that could potentially change our conception of ourselves? Because, if Christopher Hitchens described having a life-threatening illness as being “shackled to your own corpse,” then being egregiously ill and deprived of the right to die cannot be unlike being buried alive.