In the macabre spirit of Halloween just days away, UTHIP’s Global Health Engage hosted their first event of the year: an interactive discussion about death featuring Dr. Alex Jadad, a professor in the Faculty of Medicine and the Dalla Lana School of Public Health.
As attendees entered the room, they were greeted by the sight of a motionless body covered by a crisp white sheet, with only a pair of naked feet poking out from underneath. There was a toe tag attached to the right foot. After several minutes of feigned confusion about the whereabouts of the guest speaker, the body on the table sat up suddenly and removed the sheet, revealing a smiling man – Dr. Jadad. Quite the entrance.
Death, explained Dr. Jadad, was the single most important event in our life, yet for practical purposes we act as though we are immortal. How then, he asked, will we react when we are confronted with the realization of our mortality? Inevitably, there will be a point at which we realize that we have lived longer than we have left to live. The room was silent.
“So, what is death?” He posed the question to the room. The first response characterized death as the absence of life, but Jadad questioned whether this was sufficient to conceptualize death. The answer seemed to then beg the question: what is life? What, then, is love? Happiness? Hate? Beauty? We need to ask the hard questions, he implored. We need to be uncomfortable, because for most people, there is no more uncomfortable topic than death.
The current definition of death, he continued, is very medically-oriented, having to do with the cessation of vital processes in cells and tissue. Furthermore, it is only doctors who have the legal authority to declare death – a point made to highlight the deep cultural instantiation we hold of death being a scientifically-reducible event. But is this sufficient? Can this definition truly account for all that is lost when a person dies?
Jadad then presented a map of the world and stated matter-of-factly, “The prevalence of human mortality remains stable.” Quizzical looks filled the room. “One hundred percent, everywhere.” Then laughter filled the room. If there is one true fact, he explained, it is that we are all going to die. “We cannot tolerate the thought of our own death,” Jadad continued. “We may be the only species to be aware of our mortality and actively deny it.”
As if the questions he had just raised had not been thought-provoking enough, Jadad then went on to ask the room what they considered to be a good death, that is, the ideal conditions one would wish to die with. Having no regrets, dying without pain, not wanting to be alone – but not wanting to inconvenience others, and dying with dignity, were all suggested. Jadad pointed out, curiously, that very few of these required medicine, and yet, most of us would likely end up dying in an institution. The fact is, most of us will die in either a hospital or in residential care, even though we’d rather die in the comfort of our own home, surrounded by our loved ones.
Planning end-of-life care is becoming increasingly necessary with the world’s aging population. And despite the majority of the elderly indicating that they’d like end-of-life care centred on providing comfort rather than institutionalized medical procedures, most will end up living their last few days precisely were they didn’t want to be. In fact, a recent study looking at deaths in cancer patients over the age of sixty-five in several developed countries found that Canada has proportionately the highest number of deaths in hospitals. This suggests that Canadian end-of-life care is significantly more hospital-centric than its American and European counterparts, and therefore further emphasizes the disconnect between what patients want and what they’re given.
For these reasons, normalizing conversations about death and what an individual’s idea of what a good death would be is imperative, Jadad explained. Moreover, a paradigmatic shift is needed among physicians and healthcare providers to view medicine more broadly, to accept death in certain circumstances rather than unnecessarily prolonging it. Because as it stands, Jadad argued, medicine is concerned with saving lives and ignoring death.
It is precisely this preoccupation with avoiding death at all costs that has led many individuals faced with unimaginable decisions regarding end-of-life care in terminal illness, to opt to take matters into their own hands and die with dignity. Individuals like Brittany Maynard and Nan Maitland, and countless others, who decided to preserve and exercise their autonomy in deciding the conditions of their death. Maynard was a young woman of twenty-nine who was diagnosed with terminal brain cancer given six months to live. She moved to Oregon with her husband, where the Death with Dignity Act would allow her to receive physician-assisted death and died surrounded by her loved ones. Maitland was an eighty-four-year-old woman suffering from arthritis, who simply did not want to “linger on” and sought to avoid the unbearable suffering she knew lay in the years ahead. She traveled to Dignitas in Switzerland to die peacefully, although the decision stirred controversy as her condition was not terminal.
Jadad pondered, “If I wanted to die right now, who would have the legitimacy to tell me not to?” It was a question nobody quite knew how to answer. And though it was no surprise to learn that while life expectancy is increasing, quality of life is decreasing, Jadad shared his own amazement in asking a room full of end-of-life care doctors at a conference if they would like to die like their patients did. The answer was a resounding no. This answer was clearly indicative of the dissatisfaction felt by those seeking end-of-life care, and a clear impetus for physicians to do better. To listen to the needs of their patient, and for those patients to have discussions about death and end-of-life care with their loved ones, no matter how uncomfortable it may be, so that they could die with dignity.