Disability advocates want changes to protocol for withholding critical care in event of 2nd COVID wave

No one likes to think about the worst-case scenario.

Prof. Marie-Eve Bouthillier was asked to do just that: come up with a triage protocol to help doctors prioritize which patients would get access to intensive-care beds and ventilators if Quebec’s hospitals found themselves overwhelmed by COVID-19 patients.

“It was an emergency,” said Bouthillier, a professor of clinical ethics in the faculty of medicine at the Université de Montréal. “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.”

Health-care officials in Quebec wanted to avoid the heart-breaking, 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.

Université de Montréal clinical ethicist Marie-Eve Bouthillier was in charge of the committee that drafted the province’s triage protocol. (Yanick Farmer)

They contacted Bouthillier and gave her one week to come up with a triage protocol in the event of that worst-case scenario.

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.

Lack of public debate decried

Some advocates for people with disabilities say the whole process lacked transparency.

“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 Samuel Ragot, a policy analyst and advocacy adviser for the Quebec Intellectual Disability Society (SQDI).

The SQDI only learned what was in the protocol when it was leaked by a third party, he said.

He believes several of the exclusion criteria — the factors that help a medical team decide which patients are ineligible for access to critical care — are discriminatory.

Samuel Ragot, a policy analyst and advocacy adviser for the Quebec Intellectual Disability Society, said it has started a petition asking the province to revise the triage protocol and remove any criteria that discriminates against people with disabilities. (Dave St-Amant/CBC) (Dave St-Amant/CBC)

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.

“It’s 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 Ragot, who is worried mistakes may be made.

With a second wave of the virus likely, Ragot says, it’s urgent that the province revise the protocol 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. 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.”.

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.”

Safeguards in place, says ICU doctor

Dr. Joseph Dahine, an intensive-care specialist at Laval’s Cité de la Santé 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.

Dr. Joseph Dahine, an intensive-care specialist at Laval’s Cité de la Santé, said under the triage protocol, five people must assess any decision not to intubate a patient whose chances of survival are deemed slim. (Submitted by Joseph Dahine)

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 handicapées du Québec to put information online that explains the triage protocol more clearly.

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