By Trudo Lemmens and Leah Krakowitz-Broker
To meet the twice-renewed deadline imposed by the Quebec Superior Court in the Truchon case, the federal government is pushing its new Medical Assistance in Dying (MAiD) bill through Parliament before year’s end.
They should go back to the drawing board and start again.
Truchon ruled sections of the federal law on MAiD that required death be “reasonably foreseeable” infringed Charter rights. The main goal of the new bill is to allow people with chronic illness or disabilities to request MAiD even when their death is not imminent. The bill also abolishes a 10-day reflection period, an important current safeguard for people who are close to their death, even though nothing in Truchon requires this.
The bill would transform MAID from a procedure to facilitate dying into a terminal therapy for life’s suffering – but only for some. Promoting the medical system’s involvement in ending the life of persons with disabilities and chronic illness amounts to a deadly form of discrimination. Indeed, the new MAiD legislation deprives people with disabilities and chronic illness who may otherwise have years or decades to live of the protection against premature death others continue to receive with the law’s restriction to end-of-life.
The bill introduces for those who are not close to the end-of-life an assessment period of 90 days combined with an evaluation of eligibility by a practitioner with expertise in the patient’s condition. This should ensure that people are informed of other available options outside of medically assisted dying. But unlike any other country in the world, the new bill fails to explicitly require that all reasonable medical options be made available and tried first, before allowing physicians to end a patient’s life.
In other words, the bill makes dying easier than living.
While reflecting empathy for often-severe suffering, the bill thereby expresses an ableist presumption that lives with disability or chronic illness are intolerable or less-worthy. It also ignores the context in which people with disabilities have to make health care decisions.
Some critics consider the three-month period too long for people who want an end to their suffering, but in fact, 90 days are grossly inadequate.
When people are faced with a life-changing illness or disability, it takes much more than three-months to have a renewed perspective on life – and just as long, or longer, to access necessary medical and financial supports.
Recovery from spinal cord injuries may not even begin within the first three months, yet a person who experiences such a life altering injury, often accompanied by depression, could obtain MAiD before crucial life-adjustments and supports start to provide hope.
Many people with chronic illness or disability may need specialized long-term care, but people waited 126 days on average in Ontario in 2018-2019 to have access to it. Adequate home care or supported living, preferred by most people with disabilities, and safer in the pandemic context, are not even available in several provinces.
Absence of access to good homecare is why Sean Tagert opted for MAiD.
Financial concerns may also influence MAID requests. A review of a Canada Pension Plan Disability Benefit application takes approximately 120 days, with many people forced to file an appeal before obtaining benefits.
The median wait time for access to specialized pain clinics was around 5.5 month in 2017-18, with some waiting up to four years, making it faster to obtain MAiD than to receive treatment for often debilitating pain.
The pandemic, which disproportionally affects people with disabilities and chronic illness, augments all of these concerns.
Many experts and the World Health Organization have warned about the devastating mental health impact of loneliness, social isolation and reduced care on fragile elderly and other vulnerable people during COVID-19. Ontario’s former Lieutenant General David Onley and colleagues report in a recent commentary how financial distress, loneliness, and isolation among people with disabilities is already pushing some over the edge and to ask for MAiD.
Introducing a social experiment with expanded MAiD when people are more vulnerable than ever is not progressive policy making — it is reckless.
We urge members of parliament to take seriously the discriminatory risks associated with expanding MAiD. The pandemic context confirms how we need to strengthen safeguards for persons with disabilities and chronic conditions, rather than diminish them, precisely to provide people with disabilities equal protection against premature death.
Parliament should send the government back to the drawing table.
Trudo Lemmens is Scholl Chair in Health Law and Policy at the Faculty of Law and the School of Public Health of the University of Toronto. He was an expert witness for the federal Attorney General in the Truchon case.
Leah Krakowitz-Broker a JD student at the Faculty of Law of the University of Toronto.
Photo by National Cancer Institute, Unsplash