Quebec revises rules for who gets intensive care treatment if resources are limited

The Quebec government has revised its COVID-19 triage protocol following an outcry last spring from disability advocates and families who felt it was discriminatory.

The protocol helps doctors prioritize which patients would get access to life-saving intervention such as a ventilator if the health-care system was overwhelmed.

The prioritization protocol would be used only as a last resort.

"We don't want to exclude anyone, we want to maximize resources," said Dr. Joseph Dahine, an intensive care specialist at Cité-de-la-Santé in Laval, and one of the people who helped update the new protocol. "So as long as there's resources, no one will be excluded."

Exclusion criteria removed

When the triage protocol was first drafted last spring, there was a list of exclusion criteria to help doctors rule out patients.

People who had suffered a heart attack or a severe stroke were on the list.

But it also included people who had a severe cognitive disability due to a progressive illness that left them unable to perform daily activities without help.

If there was a shortage of resources, people with an advanced and irreversible neuromuscular disease, such as Parkinson's, would also not be entitled to intensive care.

Many groups, such as the Quebec Intellectual Disability Society (SQDI), felt several of the exclusion criteria were discriminatory and could result in people with disabilities being denied care. An online petition was started in May, asking the province to revise the protocol.

Emphasis on chance of survival

Prioritization is now given to patients who are most likely to survive an intensive care hospitalization.

Each patient is assessed based on the medical issues that would likely prevent them from being successfully weaned off a ventilator.

There are safeguards in place.

Under the protocol, if the patient's chances of survival are considered slim and it's decided they won't be intubated, that decision is assessed by five people.

In the updated version of the protocol, references to specific diseases are now gone.

"Just having Parkinson's disease doesn't tell you how severe it is, so we removed that," said Marie-Eve Bouthillier, a professor of clinical ethics in the faculty of medicine at the Université de Montréal.

It now refers to patients with "severe and irreversible neurodegenerative disease."

The language was also clarified around patients with a severe cognitive disability. The SQDI feared it could be misinterpreted to mean an intellectual disability. But Bouthillier says the clinicians and experts meant dementia.

"People with severe dementia, physicians avoid sending them to the ICU, because very rarely is it beneficial for them," said Bouthillier, who led the revision and consulted with several experts, clinicians, disability groups and patient advocates during the update.

Bittersweet victory

Christopher Craig said he was relieved to see the province had removed most of the elements he considered discriminatory in the new protocol.

His son, Cameron, 11, has spastic quadriplegic cerebral palsy and a global developmental delay.

When he saw the first version of the protocol last spring, he was scared his son would not receive care if he got sick and needed to be hospitalized.

It also made him angry because he felt the protocol didn't place the same value on his son's life.

"That was a little bit hard to swallow when they were painting everybody with the same brush as though they were near the end of life, simply because they were differently abled," said Craig. "I was encouraged to see that some of that language has been removed."

The Quebec Intellectual Disability Society (SQDI) is happy the province listened, but says the victory is bittersweet.

Samuel Ragot, a policy analyst and advisor for the group, says it's unfortunate it had to mount a huge public awareness campaign to have it changed.

"It's something that should not have happened in the first place," said Ragot.

More than 5,000 people signed the petition which received support from Liberal MNA Jennifer Maccarone, herself the mother of two autistic children.

Last month, the Health Ministry posted the protocol on its website, along with a short explainer, but so far, no elected official has come out and explained the protocol publicly, which Ragot finds concerning.

"It's also a question of having the general population aware that it exists and also agreeing with the choices that have been made," he said.

Although Quebec is far from the rationing of care and equipment that Italy found itself in during the first wave of the pandemic, the province is monitoring the situation closely.

The number of new coronavirus infections and hospitalizations continues to grow. This week, hospitals were asked to cut back on non-urgent surgeries and procedures to free up beds and staff.

"The government still has to come out and explain it to the population and come up with an easy way to explain it to people if we are to use it at some point in the future," said Ragot. "Hopefully we won't, but it could still happen."