Having recently assessed a patient for medical assistance in dying, and reflecting on the sort of conversations I have with my patients, I felt it was important to dust off this essay and get it out there. I wrote it last fall, in response to an especially meaningful encounter with a patient, at the same time the Senate was debating Bill C-7. I hope it serves as a conversation-starter for readers and their loved ones.
How do you decide to die? To opt for medical assistance in dying (MAID) is unique among life’s important decisions. Your life is the product of the choices you make, rarely going just as you planned. Yet, no matter how difficult a decision, you know, deep down, you could live with the outcome. It may be challenging to feel the weight of your self-imposed lot, but you know you can adapt, make the best. Not so for death. When you choose to die, and everything goes according to plan, that’s it. There is no going back.
I am a physician who assesses people for MAID eligibility. I have had some of the most intimate and insightful conversations one can experience with another human being. In discussing their desire to die I have learned what others value about living. Their decisions are not merely about autonomy, although this was the principle on which the prohibition against MAID was struck down by the Supreme Court of Canada.
In 2015, Carter v. Canada challenged the criminality of assisted death. It was ruled that the prohibition against MAID was unconstitutional as it violated section 7 of the Canadian Charter of Rights and Freedoms; the section that protects every Canadian’s right to life, liberty, and security of the person. The unanimous judgement explained that existing legislation criminalizing a person’s attempt to have death inflicted upon them, whether by their own hand or with the aid of another, was intended to protect the vulnerable. However, a consenting adult, sound of mind, would have their rights unduly infringed under this set of rules. In brief, having no access to MAID may force someone to prematurely take their own life (for fear of being incapable of doing so at a later time), disallow them from exercising autonomy over their life, or adversely affect their security by condemning them to a life of suffering and dependence. By June 2016, legislation allowing MAID was on the books, and the applications rolled in (by 2019 MAID deaths accounted for 2% of all deaths in Canada).
To be eligible for MAID in Canada, a person must be assessed by two independent clinicians, either physicians or nurse practitioners. Having a “grievous and irremediable medical condition” (i.e. serious and incurable illness), gets your foot in the door. Experiencing “unbearable physical or mental suffering,” gets you over the threshold. And this is where things get interesting, for, as it turns out, suffering takes on many forms; highly subjective forms that a third party, no matter how cranked their empathy-meter, may have trouble understanding.
Enter the “reasonably foreseeable” criterion; we will return to suffering in a moment. In its original form, the legal criteria for MAID stipulated that the applicant’s natural death must be “reasonably foreseeable.” Nowhere in the legislation was this term defined, leaving assessors like me to derive our own interpretations, no doubt intertwined with personal moral fabrics. This criterion created a stir in the MAID world and, as of 2019, was ruled unconstitutional by the Superior Court of Québec. The decision from Truchon v. Attorney General of Canada deemed that the “reasonably foreseeable” criterion would no longer apply in the province of Québec as of December 18, 2020 (a delay of over nine months-worth of extensions requested by the Attorney General of Canada). The ruling set the federal government in motion, in turn tabling Bill C-7 to amend the Criminal Code yet again. The changes, now passed by the Parliament of Canada, create two tracks for MAID, one for those already dying, another for those who would otherwise have lingered on for years, despite their longing for death. Based on the principles of justice on which MAID was legalized in Canada, this evolution makes good ethical sense. Practically, though, it changes the fundamental nature of the conversation around deciding to die.
This brings us back to suffering. People are most adept at picking up on someone else’s suffering when it includes pain, visceral symptoms (e.g. shortness of breath, unrelenting nausea), or emotions like fear and anxiety. This flavour of suffering conjures the image of a person dying from advanced cancer. Unsurprisingly, cancer was the main condition reported for just over two-thirds of MAID deaths in 2019. Truthfully, these are the easiest cases to assess. We know they are already dying; their end of life is “reasonably foreseeable.” The decision is about giving up weeks, maybe months, of physical and emotional torment. They are dying anyway. An olive branch offering an early exit, on their terms, seems like a most compassionate outcome.
But what if you don’t have cancer? What if you have a slowly advancing illness that could take years to unfold, or you had a stroke that paralyzed one side? And what if you don’t have pain or nausea or shortness of breath? These are the situations we will explore now that natural death being reasonably foreseeable is no longer at play, demanding a richer understanding of the full spectrum of suffering, and how others assign meaning to their lives.
Let me share a story about Dwayne (name changed for privacy). He was 70 when he had a devastating stroke, leaving his left arm and leg paralyzed. He couldn’t swallow without risking aspirating food or liquid into his lungs, so he was fed with a tube. The stroke had also affected his emotional regulation so that his face would contort, and he would begin sobbing at odd intervals. Despite his extensive brain damage, his cognition was unaffected, albeit now trapped inside a disabled body.
Dwayne was not the sort of person you picture when you hear he had a stroke. He was a farmer, robust yet trim, with a tanned leathery neck from years spent working outdoors. He had the thick hands of a man who did things himself and didn’t complain. Those of us in health care know that when a farmer finally gets around to coming to hospital, it’s bad; Dwayne was no exception.
After two weeks parked in a wheelchair before his tinted hospital room window, Dwayne’s mind was made up. He wanted to die. As I entered the room his back was to me, sat up in his chair, a tray attached to both support his formerly strong left arm and prevent his pitching forward onto the floor. It was a sunny autumn day. From his seventh-floor window we could see the trees blazing in colour prior to their sacrifice to the pending cold season. I had come to assess Dwayne for MAID. One interesting perk of my role is the merciful lack of small talk. People go most of their lives avoiding the topic of their own death, but once a request is made, you can get right to the heart of the matter.
Going into this encounter I knew I would have to challenge Dwayne on his motivation to die, for with proper medical care and rehabilitation, he could live for years, likely more than a decade. I needed to know that he understood what he was giving up. Now, you may then think that his circumstance did not meet the prevailing legal criteria for reasonable foreseeability (the assessment predated Bill C-7’s assent), but Dwayne held a trump card. He so happened to also have an infection in his foot. Had he opted not to treat this with antibiotics, he would have undoubtedly succumbed to a wider spread infection in the ensuing weeks. Hence my earlier supposition about these cases never being quite so straight forward. Dwayne’s case, then, came down to suffering. Dwayne was not experiencing pain or visceral symptoms. He was not depressed as many could easily have been in his circumstance. Dwayne’s suffering, a more common type than one might think, was purely existential; a category legitimized by researchers in the Netherlands, a country far more experienced with MAID than Canada.
In a 2011 scientific paper, Marianne Dees, a Dutch General Practitioner, and her colleagues, described a model of four categories of end-of-life suffering: medical, psycho-emotional, socio-environmental, and existential. Most notably, every patient they interviewed experienced the existential bit, characterized by hopelessness, inability to do important or pleasurable activities, and simply being tired of life. To underscore the prevalence of existential suffering, Health Canada’s First Annual Report on Medical Assistance in Dying in Canada 2019 ranked “loss of ability to engage in meaningful life activities” as the most common form of suffering, experienced by 82% of Canadian’s requesting MAID. Existential suffering threatens your very identity, who you think you are, made manifest by what you do.
Dwayne’s self-identity was defined by being a farmer and a provider. Other people came to him with problems, and he solved them. When he wasn’t putting in long hours on the farm he was volunteering at church or helping look after his grandchildren. He had vitality and inexhaustible drive. Now that was gone, stripped away by a tiny clump of platelets log-jamming his cerebral blood supply, creating an oxygen-starved wasteland downstream. Dwayne, as he knew himself, was already dead. Yet the Dwayne I met, the mannerly stroke patient still able to muster the courage to joke, was very much alive. And I, acting as the psychopomp at the gates from this world, was confronted with my own trepidation about the meaning of it all.
When people suffer traumatic events, including catastrophic illness, they mourn. They grieve for who they once were, knowing they will never be the same. Often this leads to reassembling or reinventing themselves anew. At least this is what we assume should happen, given enough time, care, support. Yet, as with many things we take for granted, the truth is more complicated. Dwayne knew this and he had to teach it to me.
I challenged Dwayne. I did my best to let him know what he was giving up. He would miss birthdays, graduations, weddings, and beautiful moments sitting with his wife. These things needed to be said, for as I mentioned before, though he wouldn’t regret it after death, his final wish, when carried out, could not be undone. We shared tears and sat quietly for some time, allowing space for the thoughts to unfold.
In the end, Dwayne was steadfast. I felt this to be in keeping with his authentic self, a man of decisive action. He knew what no one else could have known, what is true for all of us; his experience was his alone, accessible to no one but himself. Though we live amongst others, forging relationships built of love, it is our aloneness that defines us. Dwayne embodied this, making his strength of conviction all the more palpable. His request was granted. He died, surrounded by family, in the farmhouse in which he was born.
Dwayne’s story teaches us that MAID is about far more than autonomy. People apply their now legally protected autonomy when opting for MAID, but their reasons for exercising their right to die, and the suffering they experience, are nuanced and deeply personal. Death is inevitable for all of us. We each hope to enjoy our lives, living with quality and dignity until the end. But this can’t be the way for all of us.
Everyone suffers throughout their lives, mainly in the usual physical or emotional ways, but also existentially. We each need to explore this, asking ourselves, “Who am I?” and, “Why am I here?” These deceivingly simple questions unlock the door to our self-identity, who we think we are. We need to know what’s in there, and what other rooms are available when life slams one door shut. Dwayne had courage and conviction, but his way isn’t for all of us. Others in his situation would shift, adapting their conception of themselves, starting a new life. Neither is right nor wrong. Both are worthy of self-exploration. The legal option of MAID pushes us to become more self-aware, a path that ultimately leads to experiencing the richness of what life has to offer.
Be well.