The potential for mistakes and discrimination against people with disabilities is likely if Quebec doesn’t revise its COVID-19 triage protocol, a set of worst-case scenario guidelines designed to help doctors decide which patients get access to critical care beds and ventilators if the health-care system is overwhelmed by cases, advocates warn.
Several of the exclusion criteria — the factors that help a medical team decide which patients are ineligible for life-saving intervention — are discriminatory, in the view of the Quebec Intellectual Disability Society, an umbrella group representing organizations across the province.
“It is worrisome that you could be excluding people with disabilities based on a clinical evaluation of the survival of the person, which is not necessarily a good indicator of their real survival chances,” said Samuel Ragot, a policy analyst and adviser for the SQDI.
In addition to excluding patients who have suffered a heart attack or a severe and irreversible neurological event like a stroke, the criteria excludes anyone who has a severe cognitive disability due to a progressive illness that leaves them unable to perform daily activities without help.
People with an advanced and irreversible neuromuscular disease, such as Parkinson’s disease, would also not be entitled to intensive care in the event that there was a shortage of resources, said Ragot.
With a second wave of the virus likely, Ragot said, it’s urgent the province act now and remove any discriminatory criteria.
The SQDI has launched a website, triage.quebec, along with a petition.
So far, nearly 4,800 people have emailed their MNA and the premier to raise their concerns about the protocol.
‘It hit home pretty hard’
Christopher Craig is one of them.
When he read the protocol, he was horrified to see that someone with his son’s level of disability was lumped in with people at the end of their lives or those suffering from a critical illness.
“For us, it hit home pretty hard,” said Craig. “I couldn’t wrap my head around the fact that they were categorizing people with disabilities as lower on the list, in terms of medical treatment.”
Craig’s son, Cameron, 11, has spastic quadriplegic cerebral palsy and a global developmental delay. He cannot walk or speak and needs around-the-clock care.
About a week before the pandemic was declared, Craig said, his son seemed to be having trouble breathing. He didn’t think twice about taking him to the hospital, where they flushed out his nose and helped him to breathe.
He hates to think about what might have happened if the health-care system had been overrun by COVID-19, and the province had triggered its protocol.
“He wouldn’t have been given help,” Craig said. “He would not have made it.”
He’s worried other parents might be hesitant to seek medical help if they need it.
Craig doesn’t think society places the same value on the lives of people with disabilities as it does on the able-bodied. As a family, he said, they have to deal with that inequity every day, be it weird looks from people at the mall who are uncomfortable seeing Cameron in his wheelchair or difficulties accessing services and activities.
“To have it articulated that he’s on a list that points out he may be excluded from care because he’s less important? That’s emotional. It’s difficult. It’s hard to even talk about.”
He is angry the protocol was developed without public consultation.
“That’s a great way of sliding a new rule, protocol or bill in. You do it quickly, you do it without much fanfare and you hope it slides by without much uproar or conversation,” said Craig. “I think it’s underhanded.”
After repeatedly asking the Ministry of Health for details about the protocol, the SQDI only got a look when the document was leaked by a third party.
CBC News viewed a webinar given by the authors of the Quebec protocol, where they explained it in detail, including the exclusion criteria.
“If you have to decide who is going to live and who is going to die or not have the full care, you should have a public debate about what criteria you’re going to use,” said Ragot.
A week to make a plan
When the triage protocol was drafted, health-care officials in Quebec wanted to avoid the heartbreaking, life-or-death decisions many doctors in Italy, and later, New York, were being forced to make when they had to ration care and equipment.
“It was an emergency,” said Marie-Eve Bouthillier, a professor of clinical ethics in the faculty of medicine at the Universite de Montreal. “You have to remember that at the end of March, the situation was critical, and it was expected we’d have a peak around the beginning of April.”
The province tasked Bouthillier with coming up with a plan and gave her one week to do it.
Quickly, she gathered together a working group of more than 40 experts, including intensive-care specialists, emergency physicians, nurses, lawyers, ethicists and patients.
With their input and after a review of scientific data and protocols in different countries, that protocol was drawn up by March 25. By the beginning of April, it was sent to institutions and shared with 10,000 physicians across Quebec.
“A triage protocol is to prepare for a catastrophe. You only use it in an emergency, as a last resort. You don’t use that if the resources are still available,” Bouthillier said.
Safeguards in place, says ICU doctor
Dr. Joseph Dahine, an intensive-care specialist at Laval’s Cite de la Sante who was part of Bouthillier’s working group, said in considering that protocol, it’s important to look at the consequences of COVID-19 on the physiology of patients and the impact of prolonged mechanical ventilation.
A mild cognitive impairment would not be an exclusion criteria, Dahine said, but if that impairment is so severe that a patient doesn’t understand what’s going on around them or can’t follow instructions from medical staff to help their body recover when the tube is removed, it could make it difficult for the patient to be weaned off a ventilator, he said.
“It’s a medical decision. It’s not at all a decision based on the value of the life of someone living with cognitive impairment or any other physical disability,” said Dahine.
Dahine understands why groups like the SQDI are upset and worried, but he said it would be wrong for physicians to offer treatment that could result in two or three weeks of suffering and, in the end, still result in a patient’s death.
He said the goal of the protocol is to ensure consistent, predictable guidelines, and there are safeguards in place to avoid mistakes. Under the protocol, at least five people must have assessed a decision not to intubate a patient.
“If there are resources for everyone, perfect. But if there’s a lack of resources, then it’s in the order of who has the worst prognosis, who has the best chance,” he said.
Bouthillier said she has asked the Quebec Health Ministry to post the protocol on its website this week.
Based on some of the simulations that were done during the pandemic, revisions to the protocol will be made during the summer.
Her committee also plans to work with the L’Office des personnes handicapees du Quebec to put information online that explains the triage protocol more clearly.