How are you, Tony?” the general practitioner enthusiastically asked. His eyes were large and he spoke slowly in a tone higher than his conversational voice. “Would you like your mom and dad in the room today?”
Anthony (Tony) Miller sat still. At 20 years old, Tony found his physician’s juvenile drawl both humiliating and annoying. “Why would I need my parents in the room to help me fill out a WSIB form?” he thought. Miller injured his thumb while working in the dairy department of an Oshawa No Frills and he needed to fill out some paperwork.
Yet he anticipated this reaction from his doctor. The same physician has cared for him since he was six years old. At the age of seven, Miller was diagnosed with Asperger’s syndrome, and he’s been spoken to the same way since.
Asperger’s syndrome is an autistic spectrum disorder (ASD), as identified by The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM 5). Those diagnosed with Asperger’s or any of the other three disorders under ASD “tend to have communication deficits, such as responding inappropriately in conversations, misreading non-verbal interactions, or having difficulty building friendships appropriate to their age,” the DSM 5 notes.
Despite the fact that Miller is in university, employed and preparing to begin his master’s degree in the fall, his doctor continues to treat him like a child.
To Miller, this is a common reaction from the medical community towards both mental disorders and mental illnesses: they aren’t fully understood, even by those responsible for providing care to patients affected by them. Without fully understanding the spectrum and individuality of mental illness cases, how can the rights and needs of these patients be appropriately handled?
This is what led the now 21-year-old psychology major from Ryerson University to question the Supreme Court of Canada’s recent ruling in favour of physician-assisted suicide.
In February 2015, the Supreme Court of Canada unanimously ruled in favour of physician-assisted suicide for patients suffering from intolerable and/or irremediable medical conditions, whether physical or psychological. According to an adapted report published by Dying With Dignity Canada Inc., the formal debate about the legalization of doctor-assisted suicide in Canada began in the early 1980s. More than 30 years later, the ruling is considered a progressive and fundamental movement in Canadian human rights.
But the right to access physician-assisted suicide hinges on one specific term: mental competence. This is the term that could impact young people the most, Miller says. As a patient diagnosed with ASD, he wonders whether the current level of understanding of his diagnosis will impact his right to doctor-assisted suicide. Miller worries that medical professionals, several decades from now, will look at a form, see a checkmark in a spot indicating his medical history, and will say “oh, you can’t make this decision.”
Miller’s concern extends to those impacted by mental illness or other mental health conditions that may affect their eligibility to receive physician-assisted suicide as the legislation develops. According to the Centre for Addiction and Mental Health (CAMH), “(y)oung people aged 15 to 24 are more likely to experience mental illness … than any other age group.” At the moment, when most people consider the impacts of physician-assisted suicide, they usually focus on the elderly. But introducing the test of mental competence means many more people might be affected. That’s because, according to CAMH, 70 per cent of mental health problems have their onset during childhood or adolescence.
“(Here) is part of the issue with the diagnosis,” Miller says. “(Y)ou have this wide spectrum where there are people that have (low levels of) competency and you have people who, in every sense of the word, are rational.” He wonders: will the legislation deny the right to patients who are not considered mentally competent? If so, will he — and many other young people who suffer from mental disorders or mental illness at many different degrees — fall under this category?
Prof. Alex Wellington, too, probes these questions. Particularly, she discusses the ethical, moral and legal issues behind the Supreme Court’s ruling in her philosophy of law course on Wednesdays, during which Miller, a criminology minor, takes a spot near the front. She stands before her class in an aqua-blue pantsuit, her PowerPoint all set for presentation. Wellington, a member of Ryerson’s philosophy department, says the legal framing of the legislation is an assertion of a right to assisted suicide, presented as a moral argument.
It’s supported by ideas of autonomy, dignity, and quality of life principles. She recites previous Supreme Court cases that have been fought to the death – literally, in some cases – for this right.
Wellington brings up the importance of equality as one of the major arguments in favour of physician-assisted suicide.
“Under Section 15 (of the Canadian Charter of Rights and Freedoms), everyone is equal before and under the law … and then there’s a whole list of prohibited grounds against which you cannot be discriminated,” she says. Mental and physical disability fall under these prohibited grounds, but Wellington notes that the Supreme Court dismissed equality as an argument in the case due to the plethora of perspectives about the ethics and rights of people with disabilities.
In Wellington’s office, she later says that equality is important in her analysis of the ruling. One of her concerns is the limitation of physician-assisted suicide to people who are only going to meet certain conditions. “(A)s soon as you say that there’s a health-care service, a health-care treatment, and you say only some people can get it and others can’t, you have parity issues,” which Wellington adds, also looks a lot like potential injustice issues. “(O)nce you open things up and say that some people can have access, but others can’t, you’re always going to get this question of why them and not us?”
Beyond accessibility issues, Wellington says another cause for concern about eligibility requirements is the value statements that come with them. If the eligibility is a physical disability, then there is a presumption about how physical disabilities impact the value and quality of life. Wellington says that this is also a way of saying that autonomy won’t be granted to those who have mental disabilities or mental health conditions. “(W)ell, you’re actually then treating them in a way that you’re not treating others. They don’t get their autonomy respected because they have these mental health conditions and then, in a sense, it’s discriminating against them because they have mental health conditions.”
There’s a great running joke in Miller’s family, and everyone is in on it. You know you’re going to die in one of three ways: either you drink yourself to death, you knock yourself off, or you get cancer. “Well, chances are, I’m probably going to get cancer,” he says.
When asked whether cancer runs in his family, Miller chuckles. “It gallops. … Running sounds like most people get it, galloping is like, our family history is (entirely) that. … It gallops alongside with mental health (conditions).”
Miller’s father was diagnosed with lymphoma two years ago; his uncle is currently dying of stomach cancer; and his grandfather died of prostate cancer. Miller’s grandmother, half-brother and one of his aunts had skin cancer removed, and his great-grandfather died of what Miller thinks was probably leukemia. “(A)nd that’s just off the top of my head,” he says. The question of the right to die isn’t just a random thought that crosses his mind out of curiosity – for Miller, it could be an important choice he may have to make someday.
“Dying of cancer is probably one of the worst ways to go,” he says. “(Y)ou just wither away. You’re in pain.”
Christopher DiCarlo enters his office very modestly. His head is down, and he avoids long periods of eye contact. Like Miller, DiCarlo knows much about the life of cancer patients – he recently lost his mother to cancer. He also understands the experiences of a person with high-functioning autism, as he was diagnosed with Asperger’s syndrome only a few years ago. Like Miller, the condition seems to have little to no significance in DiCarlo’s daily routine. The past visiting Harvard scholar and professor teaches a course at Ryerson on bioethics, also known as ethics in medical care. Euthanasia has been a part of his lectures, and has been for the past 15 years.
One of the most interesting parts of the legislation, to DiCarlo, is the account for psychological health and suffering. “(But) that’s the tricky part,” he says. DiCarlo illustrates that the real issue with acknowledging patients suffering from mental illness is distinguishing whether their consent to doctor-assisted suicide is influenced by the neurological unknown. The philosopher says there are certain key questions that need to be asked when examining a patient’s case for doctor-assisted suicide. “At what level in the pathology of the disease is this patient? How close, physiologically, are they from facing death? What is their psychological state? Is this simply a product of their depression? Do they really want to do this?” All make the list.
Miller sees himself as “a typical guy with lots of prospects.” He wakes up early to catch the GO train like most commuter students.
He juggles classes, makes time for his girlfriend and his family, and manages participants in his own study. He volunteers and works in labs. He does all of this while juggling an honours thesis and preparing for his upcoming master’s in ethics of the mind at Ryerson, starting in the fall. “Just because I have Asperger’s syndrome doesn’t mean I can’t make the same pros and cons list (as other people,)” Miller says. “There’s probably months on end where I don’t even think about it.”
People with Asperger’s are “quirky as hell,” as DiCarlo puts it. But he says most people diagnosed with Asperger’s have full control of their cognitive faculties. DiCarlo calls the DSM 5 the “bible of psychological determination and analysis.” But the fifth edition of the DSM eliminated Asperger’s as its own category, which is why it is now medically known as ASD, which groups everyone into different parts of a scale. Having Asperger’s as its own category has helped people to identify functionality immediately, DiCarlo says. “We’re not all the same.” DiCarlo compares the difference in mental disorders on the spectrum to the different ways in which people suffer from cancer. Treatment, strength, and suffering will vary based on each patient’s experience with the illness. Similarly, the more we learn about mental health, the better our care will be. To Miller, this is precisely the issue with understanding mental competency in relation to physician-assisted suicide. If the diagnoses are still even slightly unclear, how can we be sure that patients with mental health will be properly accounted for in the new legislation?
Legally, Miller thinks it’s OK to ask for mental competency from patients. To him, the real issue is one of policy and procedure in the medical field that create the criteria for competency. “Competency tests, from how I understand them, are a little backwards. We don’t quite know what we’re doing yet,” Miller says, adding that there shouldn’t be a heavy reliance on the opinions of the medical community as they may be rooted in narrow perspectives. But, like DiCarlo, Miller agrees that some of the most important questions to be asked are: “Do they understand what death entails, and do they understand what the consequence of not choosing that option is?”
Despite the many uncertainties it brings, Miller believes the Supreme Court ruling is progressive. “(At) least we’re taking the right step forward, … at least we’re giving the majority of people the decision. The next step is to get the medical community on board with competency tests to get past the diagnoses people have.” DiCarlo points out the ruling’s success simply based on its popularity. He notes that 87 per cent of Canadians are in favour of doctor-assisted suicide.
If Miller had the right to receive physician-assisted suicide, he says he would be content. He doesn’t actually know if he would use the option, but he likes the idea of having it there. Wellington mentioned a similar idea in her philosophy of law lecture – the importance of the legislation is that it legalizes a right, giving people the freedom of choice. Whether they use that choice or not isn’t the matter of debate. Rather, it’s simply important that all people, regardless of disability, illness, or disorder have the right to choose.