Late one Saturday night just after Christmas 2013, Dave Lambert, 75, was alone in bed, and in pain. The incurable cancer that was found in his prostate had made its way to the base of his skull and ruined the vision in his right eye. Now, a “severe drilling” sensation behind his left eye seemed to foreshadow the unavoidable darkness to come. “I was afraid that I was going to turn blind,” says Lambert, a retired orthopaedic surgeon who lives with his wife and their three-year-old son in Sherbrooke, Que. “And I said to myself, ‘If I have to end my own life, I have to end it now. Now!’ ”
It was one o’clock in the morning. “I thought everyone was asleep,” recalls Lambert; his wife was in another bedroom so they each could rest more comfortably. Lambert got up and gathered the morphine and muscle relaxants he’d saved in glass jars for a moment such as this. He hung a “no resuscitation” order around his neck. And then, Lambert injected himself four times with “massive doses, enough to kill a horse,” and passed out.
Despite knowing of Lambert’s wish to commit suicide rather than “become a helpless victim,” his wife was shocked when she checked on him later and couldn’t rouse him. She called 911 and paramedics rushed Lambert to the hospital, where he awoke two days later, stunned to be alive. “I was amazed that I was conscious and thinking,” Lambert says. And then, he thought, “Oh, hell.”
Lambert was surrounded by more than a dozen family and friends; some were empathetic, others were angry. He was also greeted by a palliative care team “full of love and kindness.” The doctors explained their expertise at providing symptom relief and comfort measures to make the most of whatever time Lambert had left. “They said, ‘Dave, you will not suffer. If there is a lot of pain, we will control it for you.’” The reassurance was so profound that Lambert has since decided against trying to end his life again. “I’m not making any other futile attempts,” he says.
What happened to Dave Lambert is at the heart of end-of-life issues: If a terminally ill doctor, trained to foster life and versed in health care and drugs, could feel such desperation as to try to end his own life but failed, is it any wonder that most Canadians are also confused and concerned about what options they have when dealing with incurable sickness?
Euthanasia, physician-assisted suicide, palliative care, advance directives—each one of these topics is complex, commonly misunderstood and controversial. But they are increasingly important. The proportion of people dying of chronic diseases such as cancer, cardiovascular disorders or neurological illnesses such as Alzheimer’s or Parkinson’s, is “constantly increasing,” according to the Public Health Agency of Canada, with rates rising 14 per cent annually. These chronic conditions, unlike the historic big killers such as infectious disease and obstetrical mishaps, often lead to a slow death—or, put another way, years of suffering.
It’s a fact most apparent to aging Baby Boomers, who are caring for their dying parents or falling sick themselves. Meanwhile, more jurisdictions are allowing patients such as Dave Lambert the chance to end their lives with the help of doctors (known generally as medically assisted death): Besides the Netherlands, Belgium, Switzerland and Luxembourg, five American states have made the practice legal, including New Mexico in January. And now, the Quebec legislature is set to pass Bill 52 to legalize euthanasia—a first for Canada, and perhaps a model for other provinces. Although euthanasia (when a doctor ends a patient’s life) would only be available to Quebec residents, dying Canadians from across the country have said they’ll relocate there, says Wanda Morris, executive director of Dying with Dignity, a national patient advocacy organization that provides information on all aspects of end-of-life care.
For now, as Lambert’s recent experience demonstrates, one point is clear: The threats of terminal illness—protracted suffering, loss of hope and control, burdening loved ones—can provoke anguish and drastic measures. “Most people’s greatest fears are dying alone, dying in pain and losing a certain sense of dignity,” says Louis Hugo Francescutti, president of the Canadian Medical Association, which represents thousands of doctors. But none of these worries should silence Canadians, he adds: “Let’s get comfortable while we’re alive and well to discuss what our expectations are.” And what options Canadians want when death is looming.
Over the last 20 years, numerous surveys and events have consistently revealed a great divide between the general population and doctors, politicians and the courts toward the most loaded of end-of-life issues: euthanasia (when a doctor fulfills a patient’s request to die, usually by administering lethal drugs) and physician-assisted suicide (when a doctor prescribes a means to die, such as lethal drugs, but a patient himself or another person administers them). Together, they are often called “medically assisted death.”
Both practices are prohibited in Canada under the Criminal Code, but opinion polls going back to 1992 show that 64 per cent of Canadians favoured the legalization of assisted suicide; and, only a few months ago, 71 per cent reported approval. In contrast, just 34 per cent of doctors asked by the CMA last year said that assisted suicide “should probably or definitely” be made legal—results that are “basically unchanged” since the survey was first conducted in 1993, according to a summary. In its policy statement on euthanasia and assisted suicide, last updated in 2007, the CMA did not support either practice, although Francescutti says position papers represent “snapshots of the time. Now, obviously, it’s time to re-engage in that discussion.”
Meanwhile, nearly a dozen bills introduced in federal Parliament since 1991 to permit euthanasia or physician-assisted suicide by amending the Criminal Code have expired, been dropped or defeated; and several court cases have so far failed. This persistent disconnection is explained by many factors. One concern is that, if medically assisted death were legal, sick and disabled people might be urged by, for example, greedy or overburdened relatives to end their lives. There is also worry about a “slippery slope” effect: Even if only competent and terminally ill individuals were allowed medically assisted death, as is the case in most jurisdictions where the practice is legal, could criteria loosen or be overlooked to include children, or patients who couldn’t think or speak for themselves, or who suffered from mental illness, or were not imminently dying? Donald Boudreau, a Montreal respirologist, believes so: “A slippery slope exists. [Legalization] is injurious to our commonly held values. It sends a terrible message to the vulnerable in our community.”
Boudreau, like many doctors, also feels a need to “protect” his profession from the legalization of medically assisted death. “My big concern is that we are tampering with a 2,400-year-old tradition of physicians not taking people’s lives,” he says, referring to the Hippocratic Oath. Boudreau, who is the director of curriculum development at the McGill University medical school, suggests that a separate body—perhaps a new profession of “euthanologists”—should be established and held responsible for assisted death, although he would still frown upon the practice. Boudreau fears teaching students “how to be killers,” and says, “I won’t do it personally.”
Some say there may be another explanation for why politicians have been so reluctant to change the law. “Politicians run scared of this because of constituencies that are small but have great gravity, including various fundamentalist religions,” says Greg Robinson, a retired public health epidemiologist in Toronto who is dying of complications related to AIDS.
Robinson was one the first doctors to join the advisory council of physicians of Dying with Dignity, and personally wants access to medically assisted death, whether or not others agree. “I don’t take it away from anybody who wants to be stoic at the end of life—by all means, be stoic. But don’t enforce your values upon me,” says Robinson, who has also worked in family medicine and palliative care. “If I choose because of my suffering that this is the end, and I want to be with my family and friends in a loving way and say goodbye rather than flailing around in pain and agony, then offer me that opportunity.”
The notion of a patient’s “right to die” is central to arguments favouring medically assisted death. But it was a concept that James Downar only truly understood a few years into his work as a critical and palliative care physician at the University Health Network in Toronto. He learned in medical school that helping to end a patient’s life was “illegal, it was immoral, and it was unnecessary,” Downar recalls, and he began practising “very much believing and repeating the gospel.”
Downar’s shift in thinking happened after seeing many dying individuals for whom no amount of symptom relief and comfort measures seemed to ease their suffering, especially the psychological or “existential” sort. “I would deliver the lines, and I would try to reassure them, but it was clear to me after a while that I was missing the point with these patients.” Downar, who emphasizes that he has never participated in or witnessed medically assisted death, says his perspective is especially unpopular among palliative care doctors, who fear legalizing it would “distract and detract” from their subspecialty, whose goal is “good symptom management, to support patients, and help with decision-making.”
It’s a goal worth clarifying. “Palliative care is not euthanasia or physician-assisted suicide,” says Francescutti. “Palliative care is about increasing the quality” of time patients have left. It’s a point that Downar stresses, too: “It’s two completely different things for two completely different situations,” he says, adding that, even if medically assisted death were legal, he probably wouldn’t be comfortable providing it himself.
Some of the confusion may stem from the use of “potentially life-shortening symptom relief ” and “terminal sedation” in the palliative setting. “It is possible by providing, or attempting to provide [symptom relief using medication], that you may shorten life. That is acceptable, so long as it was not the intention,” says Downar, citing the “doctrine of double effect,” which acknowledges that, in providing symptom relief, a patient’s death may be hastened. Terminal sedation occurs when a patient is in a “deep and continuous sedation,” according to a 2011 report by the Royal Society of Canada expert panel on end-of-life care, and might be used on patients “suffering intractable pain.” The patient may also choose to forgo hydration and nutrition while receiving this care, which would, in effect, accelerate dying. Some might consider this similar to medically assisted death, but others again argue that the intention is different.
There is, however, at least one way in which medically assisted death and palliative care may be related: When terminally ill patients do experience symptom relief and meaningful support, it can negate a previous wish to die. “Even if someone is convinced that they want [a medically assisted death], we have found that getting people into palliative care often changes their mind,” says Morris. In fact, of the 600 calls that came into Dying with Dignity last year from people requesting support and information on ending their own lives, Morris notes that “very few use it. A lot of the peace of mind that people need comes from knowing they have an option.”
That shortage of options is what most bothered Donald Low, the prominent Toronto microbiologist famous for managing the 2003 SARS crisis. Last September, eight days before dying with brain cancer, Low made a YouTube video, wishing for a medically assisted death: “I’m just frustrated, not being able to have control of my own life, not being able to make the decision for myself when enough is enough.” Having trained under Low as a medical student, Downar says the video was “very tough to watch,” and compelled him to speak out; he, too, is now an adviser for Dying with Dignity.
Downar sees it as his duty to promote better end-of-life care—in all its iterations. “Dying people die. My job is to advocate for people who can’t advocate for themselves. I do that for palliative care,” he says. And now, Downar is compelled to do it for medically assisted death, too. “Don Low’s video made it very clear: Who advocates for people like him?”
Christie Bentham and her husband, Will, never discussed medically assisted death as a public health or political issue. For them, the plan to end their lives on their own terms, if they deemed it necessary, was entirely personal. When Will, a retired anaesthesiologist in Toronto, was diagnosed with Parkinson’s disease in his 70s, they knew it would be a long, hard road ahead; later, two of Christie’s cousins were ravaged by the same sickness.
In the eight years after his diagnosis, Will wrote letters stating his intention to eventually commit suicide “unaided,” and had Christie save them in case there were ever any questions about what had happened. His two doctors also provided notes confirming his terminal condition and wishes for no life-sustaining interventions. Christie can’t remember how Will first brought up the idea of ending his own life, “but it became something that he kept coming back to over and over again. It was obviously stirring in his mind all the time.”
By the summer of 2012, it seemed to Will that the end was near. “He could walk unsteadily. He could eat very messily. He had lost a lot of the fine motor skills,” recalls Christie. “Mentally, he was fine—other than the fact that he was so fatigued all the time that there wasn’t a great deal of joy in things.”
So, that August, Will and Christie spent time at their beloved cottage on an island in Stony Lake, Ont., and received visits from his six grown children, their partners and his grandchildren, his brother and sister-in-law, and close friends. His relatives knew what lay ahead. “I felt they should know what he planned, and understand it and agree with it,” says Christie. “And they did.”
And then, when they’d all come and gone, it was just Will and Christie at the cottage again, like so many times over their marriage of 56 years. That’s when Will ended his life. “I was present,” says Christie, who prefers not to say what happened other than, “It [was] what he had planned.”
One of the last things Will said to Christie that day was, “You’re going to have to be very brave,” she recalls. “And at the time, I didn’t feel the need to be brave because I think I was actually in shock.” But since then, Christie has found the need to be brave very important. “There are times when I think: Oh my God, why did I say to him, ‘Yes, this is the right thing to do?’ ”
When those feelings overwhelm her, Christie thinks about her cousins, and she is reassured that Will would not have been better off suffering like them. Christie hopes that medically assisted death will be an option for her if she ever wants it—even though she understands why many doctors oppose it. “When you ask them to help somebody commit suicide, it goes against the grain something awful. I don’t blame them.” Will made his appreciation to others for accepting his decision known in his last letter. It is brief and almost illegible, but Christie tries to make the words out: “I think it says, ‘Many thanks to my . . . something, something . . . relatives. Love and . . . something . . . to my dear wife for support.’ It’s really hard to read,” she says. But his message is understood.
Since Dave Lambert’s suicide attempt, he has a new will to live, at least until September, when his wife will begin new work, and his young boy will start school. Lambert, who is also an adviser for Dying with Dignity, still wishes medically assisted death were legal, and doesn’t see any paradox between that desire and his new-found appreciation for palliative care. “We seem to have gotten ourselves into a position of conflict between supporting palliative care and supporting physician-assisted suicide. This is a stupid dichotomy. We need both. We need all the love and sympathy we can get, but we also need somebody to give a final shot,” says Lambert. “There is no need for my history to be repeated by anyone else.”
Wednesday, February 19, 2014