When Tracy Odell experienced bleeding in her stomach last summer during the first wave of the COVID-19 pandemic, she went to hospital but vowed she would not return.
“I don’t feel safe in hospitals and a lot of people with disabilities similar to mine, where you need this much assistance, don’t feel safe in a hospital,” she said.
Odell was born with spinal muscular atrophy and requires assistance to complete many daily tasks.
Now, amid the third wave and with critical care units filling up, Odell said she fears if she ever needed the care, she would not be able to get it.
“I, personally, wouldn’t go to a hospital. I would feel it would be a waste of time and I’d feel very unsafe to go there … It’s a real indictment, I think, of our system, that people who have disabilities, have severe needs, don’t feel safe in a place where everyone’s supposed to be safe,” she said.
Odell is most concerned about a “critical care triage protocol” that could be activated in Ontario.
It would essentially allow health-care providers to decide who gets potentially life-saving care and who doesn’t.
Under the guidelines, as set out in a draft protocol circulating among hospitals, patients would be ranked on their likelihood to survive one year after the onset of critical illness.
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“Patients who have a high likelihood of dying within twelve months from the onset of their episode of critical illness (based on an evaluation of their clinical presentation at the point of triage) would have a lower priority for critical care resources,” states the document.
Odell says it’s tough to predict who will survive an illness.
“They have to guess who’s going to last a year ... As a child with my disability, my projected life expectancy was like a kid … they didn’t think I’d live to be a teenager and here I am retired, so it’s a very hard thing to judge,” said Odell.
Disability advocates have been raising alarm bells over the triage protocol for months.
David Lepofsky, of the Accessibility for Ontarians with Disabilities Act Alliance, sent multiple letters to Minister of Health Christine Elliott demanding transparency, arguing “the Ontario government’s pervasive secrecy over its critical care triage plans has made many people with disabilities terrified, angry and distrustful.”
“People with disabilities have disproportionately had to suffer for the past year from the most severe aspects of COVID … People with disabilities are disproportionately prone to end up in intensive care units and die from the disease,” said Lepofsky.
“Now we face the double cruelty that we are disproportionately prone to get told, ‘No, you can’t have that life-saving care.'”
Lepofsky said the document that is circulating, while not finalized, is problematic, unethical and discriminatory.
“The rules that have been given to intensive care units for deciding who gets critical care and who doesn’t, if they have to ration, may look fine because they’re full of medical jargon, but they actually explicitly discriminate because of disability,” he said.
“We agree there should be a protocol, but it can’t be one that discriminates because of disability. That’s illegal.”
John Mossa, who is living with muscular dystrophy, has been homebound for more than a year, afraid he would contract COVID-19 if he went outside and not survive it.
“COVID is a very serious disease for me … if I do get COVID, I would probably become very ill and pass away because of my poor respiratory condition. I have about 30 per cent lung capacity due to my muscular dystrophy so COVID is very serious. It’s been a very scary time,” he said.
Never more frightening than right now, Mossa said, amid a surging third wave with a record number of patients in Ontario’s critical care units and the potential for triaging life-saving care.
“The people that would be affected the most are the least considered to get care … I’m afraid, I’m totally afraid to go to hospital right now,” he said.
A few weeks ago, Mossa said, he had a hip accident but he has avoided the hospital, even though he is suffering and should seek medical help.
“I should be considering going to hospital, but I’m not going to go to hospital because I know that I won’t get the care I need and if it gets any worse. I know that I wouldn’t be given an ICU bed,” he said.
On Wednesday, when asked about the triage protocol, Elliott said it has not yet been activated.
That was echoed by Dr. James Downar, a palliative and critical care physician in Ottawa who co-wrote Ontario’s ICU protocol.
“I don’t think that there’s any plan to initiate a triage process in the next couple of days. I think a lot is going to depend on which way our ICU numbers go. They have been climbing at a fairly alarming rate,” he said.
On concerns by advocates that the protocol discriminates against people with disabilities, Downar said, “The only criterion in the triage plan is mortality risk.”
“We absolutely don’t want to make any judgments about whose life is more valuable, certainly nothing based on ability, disability or need for accommodations … If you value all lives equally, that, I think, is the strongest argument for using an approach that would save as many lives as you can,” he said.