Some people with disabilities and their families fear that if the COVID-19 pandemic worsens and decisions have to be made about who lives and who dies, they will be seen as less deserving of lifesaving care than neurotypical and able-bodied people — guidelines one expert says the province hasn't made clear enough.
These fears are already being realized in some areas outside Canada. As ProPublica reported, Alabama’s coronavirus plan says that “persons with severe or profound mental retardation...are unlikely candidates for ventilator support.”
A government document outlining the province's "last resort" plans for dealing with a major surge in hospital demand — similar to Italy's grim situation — does not contain similar language. But it also doesn't say explicitly that people with disabilities are entitled to equal care. That worries Trudo Lemmens, a University of Toronto bioethics professor and member of the school's Joint Centre for Bioethics.
The province should "err on the side of accommodation and inclusion," Lemmens said, since historically, "when it comes down to making decisions about resource allocation, about triaging...there is a tendency to have misconceptions about quality of life and life expectancy enter into the consideration of those decisions by the health-care system."
"At least there is no explicit exclusion of people because of, say, cognitive disability," he said. He added that it's good that the plan focuses care on who has the best chance of short-term survival — not who is more likely to die in five or 10 years, or who would have the better quality of life. However, he said it does not appear to focus exclusively on the chance of surviving of COVID-19, or the critical incident for which ventilation is required, leaving room for other considerations to influence the decision-making.
But, Lemmens said, there is no "explicit commitment to make sure that people with disabilities are not negatively affected by the triage policy for the mere fact of having a disability and potential lower life expectancy because of a disability."
The triage document outlines three planning stages, depending on how long a hospital is operating at over 130 per cent capacity. At each stage, patients with lower chances of survival would be removed from or denied intensive care in favour of those more likely to survive.
Level 1 would remove patients with a predicted survival rate of 20 per cent or lower from intensive care. Level 2 would raise that threshold to 50 per cent. And at level 3, only those with a 70-per-cent chance of survival or higher would remain in intensive care.
While the provincial government did not grant QP Briefing's request for comment, Kayla Iafelice, a spokeswoman for the premier, told the Globe and Mail the document is a "draft" that has not been authorized, and has to go through a number of approval processes, including the highest level of government.
However, Lemmens said the document has already been distributed to some intensive care physicians in the province.
At all stages, those with certain "clinical frailty scores" and who also suffer from a progressive illness or condition would be excluded from intensive care. Those scores include, for example, how dependent patients are on other people to complete tasks.
Hard decisions will have to be made in a crisis scenario, Lemmens said, but the current plan "means that people who still have quite a good quality of life, but who are dependent on others — who participate in some activities but need help with bathing, or minimal assistance with dressing, and so on — will enter some of these triage scenarios being de facto excluded from access to respirators," Lemmens said. That includes patients with diseases like Parkinson's or multiple sclerosis who can otherwise live full lives.
Instead of excluding people based on broad categories, Lemmens called for more individual assessments of patients, since some may be less frail than their initial score suggests.
He pointed to New York's 2015 ventilator allocation guidelines as a good example of a triage system with an explicit commitment to protect the rights of people with disabilities.
"The guidelines must reflect our common duty to protect the rights of the disabled, even while potentially encompassing them in an allocation system," the New York document reads.
Adelle Purdham, a Georgetown mother of a young girl with Down syndrome, said the ProPublica article got her thinking about whether her daughter's care could be "deprioritized" at home if she became critically ill.
"As soon as I realized that that could be going on in the United States, I thought, 'Well, we need to speak against this in Canada,'" she said. "We need to take a proactive approach."
So she wrote an op-ed in the Toronto Star cautioning governments against instituting a "hierarchy of worth" for patients in need of critical care.
"Let's take a minute right now, before things get any worse, if that's where things are heading, to just pause and think about if it was our family member in that situation," Purdham said, asking parents to "stop and say, 'Imagine that was my 7-year-old daughter. How would I feel?'"
University Health Network President Dr. Kevin Smith, who sits on the province's COVID-19 command table, has told media that if a similar situation plays out here, those decisions won't be made based on age.
But Smith didn't respond to questions from QP Briefing about how the province plans to triage people with disabilities. Neither did Dr. Jennifer Gibson, the director of the University of Toronto Joint Centre for Bioethics, which leads the province's COVID-19 bioethics table — or the Ministry of Health.
The document says the triage system will not play favourites based on "socioeconomic privilege, or political rank." But advocates like AODA Alliance Chair David Lepofsky said people with disabilities need the same assurances — that they will be treated at the same priority as able-bodied and neurotypical people.
Two weeks ago, the AODA Alliance released a list of demands for the Ontario government, including that "people with disabilities not get the short end of that stick, based on harmful stereotypes about the quality of life when one is living with a disability. Such stereotypes too often have been present in our health-care system. We cannot afford for them to surface now, and be used to justify denying needed medical services because a patient has a disability."
Since then, Lepofsky said he's heard nothing from the government about that and other disability-related issues during the pandemic.
Lemmens, who teaches under U of T's law school, said there are also legal concerns with the triage plan, which calls for patients with lower survival chances to be taken out of critical care for healthier people. Logically, that makes sense, he said, but it is "in my view not necessarily legally sustainable," since the Supreme Court case law suggests that those decisions can't be made without the input of the patient or surrogate decision makers. But he noted that there is no existing case law in the context of a pandemic on this scale.
Purdham said she remains hopeful that the values of Canada's universal health-care system mean her daughter will receive good care, should she need it. She thought back to the birth of her daughter, who was born with duodenal atresia and needed surgery right away.
"And there was never any question as to whether my daughter's life was valuable or not — as to whether she would receive that treatment," she said.
But until they're assured that they and their loved ones will not be discriminated against, Purdham has a message for people with disabilities and their loved ones.
“Keep raising your voices. Voice your concerns. Seek support from each other. And know that we all stand together in solidarity."
CORRECTION: A previous version of this article stated Lemmens said it was good that the draft plan focuses care on who has the best chance of surviving COVID-19, when he in fact he referred to the best chance of "short-term survival." The article has also been clarified to say that people with certain clinical frailty scores would be excluded from intensive care, but only if they also suffer from a progressive illness or condition.
Photo provided by Adelle Purdham.