Jonathan Garfinkel\u2019s latest book is In a Land Without Dogs the Cats Learn to Bark.<\/p>\n
When is it enough?<\/p>\n
This question has often run through my head. Maybe it\u2019s the question everyone living with chronic illness asks themselves at certain times. Which is to say, \u201cWhat is a good life? What is a life worth living?\u201d<\/p>\n
For 40 years I\u2019ve lived with Type 1 diabetes. There have been good years and bad years. Complications, some challenging, most manageable, built up over time. Then, four years ago I developed long COVID. Diabetes was plenty to manage. Long COVID\u2019s neurological effects took living with disability to a whole other level. It was, at times, too much.<\/p>\n
Ironically, I was trying to finish my PhD and a memoir about living with Type 1 diabetes. Instead, I was languishing in bed with fatigue and forgetfulness. Every day I asked myself: Was this going to be the rest of my life?<\/p>\n
When is it enough?<\/p>\n
When I learned this past winter that Kiano Vafaeian, a 26-year-old man was granted<\/a> medical assistance in dying (MAID) due to Type 1 diabetes and complications including neuropathy and progressive blindness, augmented by a lifelong struggle with depression, it shook me. He had had enough.<\/p>\n Opinion: Why are the rules different for MAID depending on what you have?<\/a><\/p>\n In Canada, MAID comes from the admirable philosophy of dying with dignity, rooted in the concept of individual autonomy, balanced by protecting the vulnerable. The practice was legalized 10 years ago, in June, 2016, for patients with terminal illness whose natural deaths were \u201creasonably foreseeable.\u201d The parameters for what are known as Track 1 MAID were clear: a patient must have a serious and incurable condition, be in irreversible decline, and be suffering intolerably in ways that cannot be relieved on terms they find acceptable.<\/p>\n In 2021, after a challenge by two Quebec residents living with chronic disabilities, legislation was passed to allow MAID for people \u201cwhose deaths are not reasonably foreseeable\u201d \u2013 known as Track 2 MAID. This was more controversial as it is harder to define. The current debates in parliament about whether people living with mental illness should also have access to MAID has only intensified the arguments. (Currently, mental illness alone does not qualify; in Mr. Vafaeian\u2019s case, his depression was considered alongside his physical deterioration.)<\/p>\n It has been a decade, but questions remain: When does a person living with disability whose death is not imminent have the right to say \u201cenough\u201d? How do medical professionals determine if an individual\u2019s autonomous choice of assisted death is humane, or a result of a system that has failed a patient who feels they don\u2019t have any other options?<\/p>\n I did not know Mr. Vafaeian, but it is clear he suffered. As I watched him in an interview<\/a>, I kept thinking: what if he\u2019d had better alternatives? Could he have received better advice and therapies, more suited to his specific needs? What if there were other people with diabetes or blindness who were there for him to speak to, help shoulder his burden, share stories, advice and inspiration? Mr. Vafaeian \u2013 as he said \u2013 felt alone in his illness.<\/p>\n To me, this is one of the most common adversities of the chronic illness experience: the loneliness of it. Living with disability in an able-bodied world is incredibly challenging. Many people with disability are without any support network \u2013 no one to help with grocery shopping, take out the garbage, cook meals, bring them to medical appointments. For others, people may be around to help, but there can remain a sense of alienation resulting from living in an uncaring system.<\/p>\n I imagine Mr. Vafaeian felt alone facing vision loss. There are so many small objects to navigate with diabetes: tiny needles, fragile insulin cartridges, the coin-sized continuous glucose monitor\u2019s retractable needle punched into an arm every 10 days. Then there are the blood glucose levels to monitor and respond to by adjusting insulin dosage and carbohydrate calculation, a precarious balancing act requiring dozens of calculations and measurements daily. How would he do the things he needed to live?<\/p>\n Open this photo in gallery:<\/a><\/p>\n Kiano Vafaeian.Mching\/Courtesy of family<\/p>\n While I might look healthy, there are days in a week I simply cannot get out of bed. Plans are cancelled, jobs passed up. Anxiety blossoms. This is often accompanied by shame and humiliation \u2013 I wonder if Mr. Vafaeian felt it too. The shame of inconsistency. The humiliation of not being able \u201cto do\u201d and feel your life is worth living. We all have a desire for a life with dignity, autonomy, belonging and meaning. To feel we matter \u2013 to others and ourselves. These are hard enough to achieve when you\u2019re healthy. But when living with disability, it can feel impossible.<\/p>\n In part it\u2019s a question of accommodation, both physical and psychological \u2013 our health care systems do not have the support in place required to accommodate the specific, multi-faceted needs that often accompany people living with chronic illness. Earning money becomes an anxiety that predicates an uncertain future. How can I afford next month\u2019s rent and groceries? How will I work with a body that constantly challenges the notion of consistency needed to be a productive person? How can I live independently and freely, while recognizing that I depend on others to live? Which is to ask: is it morally acceptable for a society to assist in the death for groups of people it is doing so little to help live?<\/p>\n Ethicist George C. Webster, whom I spoke to by phone, addressed MAID\u2019s legislative focus on autonomy by reframing the question. \u201cThe health community is driven by an understanding of autonomy, which I think is a simplistic expression of who a person is. Choice doesn\u2019t exist in a vacuum.\u201d To Dr. Webster, even well-intentioned clinical assessments can work against patients when they fail to think critically about what autonomy actually requires \u2013 adequate options, genuine support, freedom from coercive circumstances. These are conditions often absent for people living under the wide umbrella of chronic illness.<\/p>\n And those people, it turns out, are far more numerous than we tend to acknowledge \u2013 and growing at alarming rates. Meghan O\u2019Rourke\u2019s 2022 book, The Invisible Kingdom, documents the increase in autoimmune illnesses that have created what she calls \u201ca silent epidemic.\u201d In Canada, 300,000 people live with Type 1 diabetes; this number is growing 4.4 per cent per year<\/a> (between 2000 and 2022 it increased 34 per cent). <\/p>\n Robyn Urback: A decade after MAID became legal, life has become cheap in Canada<\/a><\/p>\n Around two million Canadians<\/a> live with autoimmune illnesses, including multiple sclerosis, inflammatory bowel disease and rheumatoid arthritis. A landmark U.K. study in the Lancet<\/a> in 2023 states that in the last two decades there have been increases in autoimmune illness upwards of 22 per cent, largely driven by individuals who had pre-existing autoimmune diseases developing a secondary one.<\/p>\n Post-viral acute illnesses, like long COVID, fibromyalgia, Lyme disease and myalgic encephalomyelitis\/chronic fatigue syndrome are also on the rise. In Canada, over two million people live with enduring symptoms of long COVID<\/a>, while over 600,000 live with diagnosed ME\/CFS<\/a> and 800,000 live with fibromyalgia<\/a>, numbers experts warn are surging due to post-viral complications.<\/a> <\/p>\n These categories are distinct but overlapping. Autoimmune illnesses vary widely \u2013 some are well understood and treatable, others remain elusive. Post-viral acute conditions like long COVID and ME\/CFS occupy a greyer zone: poorly understood, difficult to diagnose, and largely invisible to a medical system designed around acute care and biological markers. What unites all of them is that patients often navigate a fragmented system ill-equipped for the complexity of chronic, multi-system illness.<\/p>\n As someone writing about and living with Type 1 diabetes and long COVID, my focus is less on the biological research of these diseases and more on how patients are treated by the health care system and society. The \u201cinvisible kingdom\u201d that Ms. O\u2019Rourke describes is, in my long COVID experience<\/a>, a world of medical gaslighting, lengthy delays in diagnosis and a lack of co-ordinated care. My 15-minute diabetes appointments, once every six months, barely scratch the surface of trying to address the daily demands and complexities that comprise a life with chronic illness, and the anxiety and burnout that so often overwhelms me.<\/p>\n I have often fantasized about my various specialists gathering together to co-ordinate a complex and multi-faceted approach to long COVID and diabetes, not as separate diseases but as one continuous illness experience. While this sounds like a pipe dream in a world of specialization and eroding health care systems, there are places of innovation where this is happening. Centres for post-viral acute illnesses, like the Cohen Centre for Recovery from Complex Chronic Illness<\/a> in New York, and the UHN Post-Covid<\/a> condition rehabilitation program in Toronto, offer a diverse group of co-ordinated health care professionals. These institutions are rare beacons of light in a dark and outdated approach to health care.<\/p>\n There is a significant amount of time and energy a person living with disability has to invest just to stay alive; living with diabetes is a part-time job. But it also goes to our very being. It\u2019s essential to have income support and a place to live. It\u2019s also important to have a sense of belonging, to feel our lives count and are meaningful. A person living with disability has to titrate time spent on health and health care, while trying to live as full a life as possible. It\u2019s exhausting.<\/p>\n To say \u201cenough,\u201d as Mr. Vafaeian did, is the cry of someone who felt defeated by an uncaring system \u2013 exhausted by it.<\/p>\n I recently spoke to Dr. Ed Weiss, a physician in Toronto and one of Canada\u2019s first MAID practitioners in 2016. Although he\u2019s worked on several Track 2 cases \u2013 meaning when natural death is not foreseeable \u2013 he\u2019s concerned the wording in the legislation is too broad. \u201cWhat is \u2018irreversible decline in capability\u2019? What are considered \u2018unacceptable conditions\u2019 for physical and psychological suffering? I think the criteria put in place to evaluate eligibility for Track 2, and the oversight needed to make sure that\u2019s being done ethically, is where we\u2019re falling short,\u201d he told me.<\/p>\n In the case of Mr. Vafaeian, this ambiguous terminology likely contributed to the approval of his second MAID request in December, 2025. (The first time he sought MAID, in 2022, his mother initiated a petition to stop an Ontario doctor from granting Mr. Vafaeian\u2018s request. He eventually found a doctor in B.C. to grant him MAID<\/a>.) For Dr. Weiss, though, it is more than a problem of legislation. He cites a philosophical divide within the medical profession itself.<\/p>\n \u201cOn the one hand, you have the \u2018maximalists\u2019 who believe in \u2018autonomy \u00fcber alles.\u2019 Some doctors see that as the priority and their focus in medicine.\u201d Dr. Weiss describes other doctors who think autonomy shouldn\u2019t be the primary concern in health care \u2013 the difference between \u201cproviding care\u201d and \u201ccaring for patients.\u201d Someone who provides care helps to facilitate autonomy at all costs. Someone who cares for patients tries to look at the bigger picture of a patient\u2019s suffering and see illness in its entirety. While Dr. Weiss acknowledges the latter might be judged by some as paternalistic, he believes it is a doctor\u2019s duty to look out for the patient and navigate their illness in all its complexities and manifestations, including aspects the patient doesn\u2019t always see.<\/p>\n Dr. Weiss fears Canada\u2019s autonomy-first approach leans too much on patient demand, as well as MAID provider autonomy, leaving it up to each individual health care provider to determine if they have sufficient expertise for Track 2 cases; this allowed Mr. Vafaeian to \u201cshop around\u201d until he found a doctor to assent to his request. By contrast, the Netherlands<\/a> focuses more heavily on medical consensus. As a result, approximately 90 per cent<\/a> of Dutch assisted dying requests for solely mental illness are turned down after rigorous physician assessment.<\/p>\n \u201cOne thing missing in medical schools is the way doctors are taught to listen to people\u2019s stories,\u201d said Dr. Weiss. He explained that doctors need to learn to listen better and more closely, which also means not taking everything a patient says at face value. \u201cIntegrate it with the person\u2019s context. Think about what\u2019s not being said. What are the broader patterns in a person\u2019s life? If a person has a lifelong pattern of self-neglect, of not being able to assert themselves, that speaks to something more than the suffering of the current moment.\u201d<\/p>\n Parliamentary committee to deliver conclusions on expanding MAID to people with mental illness on June 17<\/a><\/p>\n Dr. Weiss\u2019 desire to see more health care professionals engaged in critical listening echoes the work of Dr. Rita Charon, author and founder of the School of Narrative Medicine at Columbia University<\/a>. Dr. Charon advocates close-listening to patients\u2019 \u201cstories of suffering\u201d and treat a person\u2019s illness narrative the way a literature scholar might investigate a Chekhov short story: look for inconsistencies, find connections, note the unsaid. Of course, in a 15-minute medical appointment \u2013 if one is fortunate to even get such an appointment \u2013 there is only so much time for listening. But a world where doctors are taught and encouraged to be better communicators and more curious listeners in their patient engagement is possible. The chronically ill \u2013 often experts in their illness from lived experience \u2013 might even teach health care professionals things they did not know. <\/p>\n