Children Should Not be Euthanized Just Because They’re Disabled

When I was growing up, every week, my Indian immigrant parents would drive my two siblings and me to a long-term care facility close to where we lived, so we could spend time with the residents. I remember one elderly woman, in particular: she’d had a debilitating stroke and no family to visit her. My […]

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When I was growing up, every week, my Indian immigrant parents would drive my two siblings and me to a long-term care facility close to where we lived, so we could spend time with the residents. I remember one elderly woman, in particular: she’d had a debilitating stroke and no family to visit her. My dad would sneak in Big Macs, After Eight chocolates; anything to bring her a bit of joy. My parents also regularly visited those without support in prison until they needed to move in with my family due to my father’s growing health needs.

As a mother of five, a caregiver to my father, and a family physician who has practised since 2007, I try my best to continue my parents’ commitment to leave no one behind. My practice, which is based in London, Ontario, predominantly serves low-income and marginalised adults and children: refugees, people who are facing charges or have been incarcerated, people with chronic pain and others with disabilities and mental health issues, including substance use disorders. Many of them wait excessively long periods or are declined specialist care, housing, medications, or counselling. Some wait in line at food banks, while others are forced to choose between affording transit to keep medical appointments or buying nutritious food. They face discrimination, isolation, and inaccessibility, all of which negatively affect their health.

Witnessing these barriers firsthand, it was clear to me that our society does not prioritise supporting those who need it most. I was doubly alarmed to hear that some of my patients were contemplating or being offered medical assistance in dying, or MAiD, due to this lack of resources. In 2020, I began reaching out to Canadian politicians to raise my concerns that MAiD could become the path of least resistance for those with insufficient resources to live. Since then, I’ve been invited to voice my opinions in numerous disability, Indigenous, academic and parliamentary settings about MAiD, including appearing as an expert before our federal Special Joint Parliamentary Committee on MAiD in 2022.

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Back in 2016, assisted suicide and euthanasia were legalised in Canada and the term medical assistance in dying (MAiD) was coined for both methods of administering death. MAiD was sold to Canadians as a humane way to end the lives of consenting adults who were experiencing intolerable suffering. Patients had to meet certain criteria, including having a “grievous and irremediable” medical condition, such as heart failure or cancer, and a “reasonably foreseeable natural death”. In recent years, the number of people who qualify for MAiD has grown: in 2021, Bill C-7 created a new track for adults with chronic illnesses and disabilities who aren’t dying. Bill C-7 also had a sunset clause that would allow future eligibility to those whose only medical condition is mental illness, which might be delayed again, but thus far is set to become legal in March.

Numerous alarming stories about MAiD abuses are emerging from Canada that should give us pause. For example, Rosina Kamis explains in her recordings and her writings that she was driven to MAiD by loneliness and poverty. I was interviewed for the Al Jazeera documentary, Do You Want to Die Today, which documents her story in detail. Like Rosina, many disabled Canadians are suffering from social distress, including poverty, and dying by MAID. Their disability qualifies them to die but it is their psycho-social suffering that can drive their MAiD request. I am distressed that some Canadian bioethicists even argue that providing MAiD for requests driven by “unjust social circumstances” can be understood as a form of “harm reduction.” Encouraging people to die through MAiD for “living in unjust social circumstances” is more injustice, not harm reduction.

From legalisation to the end of 2022, there had been almost 45,000 MAiD deaths – more than 13,000 of these took place in 2022. In 2023, the Special Joint Committee on Medical Assistance in Dying – the one I spoke at – made some alarming recommendations, including expanding MAiD to “mature minors” whose death is “reasonably foreseeable”. They specified that parents could be involved in this process but ultimately, the decision should rest with the child, provided they are deemed capable.

At the moment, the mature minors provision is merely a recommendation. However, it will likely be legislated, given it is a priority of powerful lobbyists who have already created momentum for the rapid expansion of Canadian MAiD.

Here’s how it could roll out: Under Canadian law, specifically the mature minor doctrine, a child’s capacity for decision-making around healthcare procedures is not based on their age. A capacity assessor determines whether the minor in question can fully understand and appreciate the consequences of a procedure. If they are deemed capable of consenting, they are considered a “mature minor”.

There are a few problems with the proposed application of this doctrine to such a high-stakes decision. One is that there is inadequate precision in these assessments. Even for adults, the existing data shows that different assessors can come to different conclusions regarding decision-making capacity in the same case. This is even less studied in children.

Another point of concern is that the Canadian Association of MAiD Assessors and Providers (CAMAP), a group that has received 3.3 million Canadian dollars ($2.5m) in funding from Health Canada to educate MAiD assessors and providers, has created a guidance document that suggests clinicians can be flexible in determining whether someone has a reasonably foreseeable natural death (RFND) since the law does not require that the person must be terminally ill or expected to die within six or 12 months to fit into this category. In this context, expansion of MAID to mature minors would mean that a child as young as 12 with cancer – even one with years to live – could be approved for a lethal injection without parental agreement.

This proposed expansion would also allow minors who aren’t terminally ill at all to choose MAiD. The document also states that a person may meet the “reasonably foreseeable death” criterion if they’ve demonstrated a clear and serious intent to take steps to “make their natural death happen soon, or to cause their death to be predictable”. This could come about as a refusal to take antibiotics for an infection, stopping oxygen therapy or a refusal to eat and drink. If legalised, a disabled minor who states their intention to refuse care or who makes themselves sick enough could qualify as having a reasonably foreseeable natural death under this provision, as is currently happening with adults who are not dying and yet having their lives ended within days of their first MAiD assessment.

As a mother, I can’t fathom living in a country where the government has the power to assist in the suicides of my children without my consent. It is concerning that parents’ knowledge of their children’s maturity and emotional drivers could be ignored by MAiD assessors in Canadian legal context. Parents will be devastated if their child’s request for MAiD is granted against their wishes.

As a physician, there are several reasons why I’m against the expansion of MAiD to mature minors. First, brain development takes a long time; it continues well into our 20s. As a result, pre-teens and teenagers can act impulsively, sometimes engaging in risky behaviours that get them into trouble. With a limited ability to see the future, these youth may be more likely to choose MAiD for misguided reasons – for example, to avoid bullying at school or to be reunited with a deceased loved one. Rates of depression in teens continue to rise, and this can be coupled with the known phenomenon of teenage suicide clustering – where suicides spike after news coverage of one, or after hearing of a close friend or loved one who has self-harmed. I can only imagine the potential for contagion if many Canadian teens begin choosing MAiD.

Evidence from countries where MAiD for mental illness is legal demonstrates that death is often chosen by those who have experienced early childhood trauma, including abuse, which can contribute to feelings of suicidality. In this context, experiences like bullying, discrimination or growing up in the child welfare system might influence a minor’s views on the value of life. One of my dearest friends spent time in the foster care system, and she would tell you that, as a child, she was often perceived as exceedingly mature. For her, this was a survival skill, not an indication of genuine development. In cases like these, some of Canada’s most vulnerable children – who appear capable of making life-altering decisions – could be put at risk by MAiD assessors who judge them at face value. Other minors who remain in abusive homes could choose MAiD as an escape route.

Socio-cultural failings could also contribute to mature minors choosing MAiD. Indigenous people have experienced the effects of trauma, brought on by colonialism, which has led to higher rates of suicide among Indigenous youth (PDF). I have met numerous Indigenous leaders across Canada who are concerned about MAiD, including Graydon Nicholas, who is an Indigenous elder and leader, working to stem suicide contagion among Indigenous youth.

Similarly, Toujours Vivant-Not Dead Yet, a disability-rights organisation, expressed alarm at the suggested mature minors expansion to MAiD. They explained that disabled children sometimes grow up in families where their parents, because of society’s negative perception of disability and lack of provided support, see their children as a burden which in turn causes childhood trauma. Yet this despair often resolves in adulthood and is replaced by an understanding that it is our society that needs to change. Many lives can needlessly be lost if such children are presented with the option to end their lives through MAID before completing their psycho-emotional development.

Lastly, emergency rooms are overcrowded, surgeries are at a standstill and so many Canadians don’t have regular access to family doctors, all of which limits care. Right now, there are no statistics on access to palliative care for Canadian children. Paediatric palliative care centres do exist in several major cities, but most other places have little to no resources. In remote areas, the best care many children can hope for is advice given over the phone to local practitioners – the first subspecialty programme in paediatric palliative medicine was launched in Ottawa in 2021. In a country where paediatric care is this insufficient, an expedient death programme should not be a priority recommendation. We should devote our time and energy to building up palliative-care centres and robust access to disability and mental health supports. We also need better community and educational systems that support children and families, programmes that help build relationships and a sense of meaning and belonging for children – things that make life better.

I lose sleep over Canada’s unchecked MAiD regime. The recent news that Canada might pause the MAiD expansion for mental illness offers little relief in the full scheme of things given the problems and abuses we are already experiencing. In any case, MAiD has expanded rapidly and lobbyists are still gunning for children as young as 12 to be eligible. This runaway train must be brought to a halt now.

Ending the lives of children prematurely is particularly tragic since treatments might be developed that could have extended and improved their quality of life in a future they’ll never have. The idea that we must relieve suffering immediately through MAID distracts from addressing the root causes and potential solutions for suffering. These are not the values of care for the disenfranchised that my parents taught me, that I try to practise in my life and profession, or that I believe most Canadians embrace. Rather than trying to expand its problematic regime of medically assisted death, the Canadian government should focus on improving care and support for all, and fostering community life, purpose and belonging – things we know make life worth living.

LifeNews Note: Dr Romana Coelho is a family physician in London Ontario. The article was published by Aljazeera on February 16, 2024.

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