Since the beginning of the pandemic, there have been around 26,230 deaths in Canada caused by COVID-19, according to the official figures.
A tragic toll — but maybe only a glimpse of the true number, new research suggests.
The number of Canadians who have died because of the COVID-19 pandemic is likely double that shown in the official numbers, according to a disturbing new report published by the Royal Society of Canada.
“It was pretty devastating actually, and pretty shocking,” Tara Moriarty, an infectious disease researcher with the University of Toronto and one of the authors of the report, told CTV News.
The report, which looked at excess deaths, suggests that largely racialized communities and essential workers were the ones caught in the crossfires, often perishing at home and going unreported as COVID-19 deaths.
This contradicts our current understanding of COVID-19 fatalities in Canada as being overwhelmingly concentrated in long-term care, a focus which may have distracted us from other communities in need.
The study reviewed death reports in 2020 and compared them to the expected number of deaths in a normal year, finding some 6,000 extra deaths among those aged 45 and older between February and November 2020.
Assuming this pattern of missing deaths continued after November, it’s possible that as many as 50 per cent of deaths missed being counted as COVID-19 deaths and included in that official number, the report suggests.
This could mean that instead of 26,000 deaths, up to 52,000 Canadian deaths may be linked to the pandemic.
“They weren’t recognized as COVID-19 deaths, for whatever reason, and there are quite a number of possibilities and they vary by province,” Moriarty said.
“What it really looks like right now is that the COVID death toll is very likely to be double what we think in all regions outside of Quebec, [which] is probably accurate.”
The report detailing this enormous oversight is a complicated indictment of Canada’s response to COVID-19, exposing a failure to test, report deaths consistently and to pay attention to marginalized communities.
DIGGING INTO THE NUMBERS
Moriarty said she started to realize something was off while she was tracking long-term care deaths in Canada.
“I was looking at things like the case for case fatality rates in Canada, and the numbers didn’t seem quite right,” she said.
“Over time I started realizing that, in fact, there were quite a few more deaths than we had expected and so it took months to sort of be sure that what I was seeing was likely COVID-19 deaths.”
She explained that researchers adjusted for an aging population as well as the amount of deaths due to toxic drugs, and still found a disparity in the excess deaths.
Right now, the official data for COVID-19 deaths in Canada suggests that about 80 per cent of COVID-19 deaths occurred in long-term care homes.
But the report says that’s wrong — like most other countries, two thirds of our deaths likely happened outside of long-term care, when the elderly living at home and lower-income racialized front-line workers became ill.
“That suggests that people have been dying in their homes, unrecognized, with COVID-19,” Moriarty said. “And for them and their families for everyone, we need to understand exactly how that could have happened, because that’s actually quite horrifying.”
She said that we should’ve known from data from other countries that something was off about our numbers.
“We shouldn’t have thought that we would be different than other countries, that we wouldn’t have the same vulnerabilities in terms of occupation, age group and other risk factors, but somehow we focused on long term-care,” she said.
“It was horrifying what happened in long-term care, […] but it was pretty distressing to see how many other deaths were likely missed.”
The report also cited a study that had looked at cremation records in Ontario in 2020 and found that there was a rise in at-home deaths, with 63 per cent of excess deaths occurring there as opposed to only 30 per cent in long-term care.
Because they were looking at death counts, they did not have much specific demographic information for the deaths themselves. But researchers were able to estimate who was affected by these uncounted deaths by looking at the age groups and where they occurred.
“We know that twice as many [COVID-19 deaths], for example, have occurred in racialized communities, communities [that] have lots of essential workers, high-density apartment buildings, larger households,” she said, adding that those receiving home care were a population overlooked as well.
“My guess is that we probably missed a lot of homecare linked deaths and homecare is also more commonly used in lower-income neighborhoods, where you have challenges where people really do need the help because family members are working.”
For those hard-hit communities, the contents of this report are emotional.
Dr. Onye Nnorom, president of the Black Physicians’ Association of Ontario and an assistant professor at the University of Toronto, told CTV News that this report hits hard because the communities affected had tried to raise alarm bells earlier in the pandemic and they were ignored.
“That’s why I cried when I read the documents, because people had been shouting from the margins, saying, ‘Please look at what’s happening, can you save us, can we do something, can we mobilize resources, can we have sick days, paid sick days for people working in these communities,’ and those cries were not heard,” she said.
She said we need to ask why these deaths were ignored, explaining that while the report refers to these deaths as “unnoticed,” she believes this term is insulting because communities have been speaking up about what they’ve witnessed in how their community has been affected by COVID-19.
“It was willful ignorance to ignore what was happening on the ground,” she said.
She added that many essential workers doing jobs in home care and on the front lines, “in formal and informal caregiving,” tend to be women, and that we may discover that a number of these preventable deaths were women.
“The numbers aren’t just numbers, those are people, those are families, those are lives. And this potentially was preventable, and predictable,” she said.
“The most powerful line in the report is where they say it is unimaginable, how this many deaths could have, or would have, been missed if they had occurred among white privileged people who were in white privileged neighborhoods.”
A SCATTERED SYSTEM
One of the problems that led to these deaths failing to be counted, according to the report, is that Canada tested 75 per cent less than the average for our peer countries early on in the pandemic, missing cases until doctors spoke up, recognizing atypical symptoms.
Dr. Samir Sinha, who works in geriatric medicine at Mount Sinai Hospital, published a case report early on in the pandemic detailing a woman who presented atypically, and then was diagnosed with COVID-19 two days later.
“We probably lost a lot of deaths being reported from COVID-19 because there just wasn’t any thought to actually investigate those deaths, even in a post-mortem way, just to actually do a test and say, ‘Was COVID a factor?’” he told CTV News.
“When physicians are filling out death certificates, for example, they’ll often actually say, ‘Well, the main cause of death was, say, a heart attack,’ and then they might actually put another condition like dementia or other things with it. But again, if COVID-19 wasn’t suspected, then it’s very likely that wasn’t even factored in as a potential cause of death.”
Across the country, testing has varied depending on the size of outbreaks and things such as laboratory testing capacity, but in general, Canada is far behind other peer countries on testing. According to the report, Canada had performed 25 tests per positive case as of May 17, 2021, while its peers, on average, had performed 98 tests per positive case.
And despite experts consistently calling for testing to be used more actively to screen high-risk populations and workplaces, this strategy has not been widely implemented.
“The truth of the matter is we don’t really know how many people died of COVID-19, because, especially in the early days, we weren’t necessarily testing as readily, so people may have been dying but if they weren’t actually confirmed to have died of COVID-19 or died with COVID-19, we wouldn’t really have had a good handle,” Sinha said.
Dr. Amanpreet Brar, a general surgery resident at the University of Toronto, added that by failing to test more, we missed where the transmission was occurring, saying we only realized the extent of workplace transmission later on.
“Especially in manufacturing areas, and we saw that a lot of workers were going to work with symptoms because they had no access to paid sick leave, they didn’t have job security, and I think we didn’t see that initially until the data is coming out now,” she said.
Another contributing issue in having accurate death records is that Canada’s requirements for filing death reports are lax.
“Every one of our peer countries legally requires deaths to be recorded nationally within a week of them occurring,” Moriarty said. “Canada is months to years behind — we don’t have any requirement for that.”
If we had been able to spot deaths piling up early on in 2020, with faster reporting, “it might have provided a real warning that would have been really important,” she said.
There is still incomplete data even now, she pointed out.
“We don’t have complete cause of death reporting in many provinces past February 2020, June 2020,” she said.
The standard on how to report COVID-19 deaths also varies from province to province, another roadblock to accurate data. Researchers said that of all the provinces and regions they looked at, only Quebec appeared to have accurately captured all of its COVID-19 deaths.
The report pointed out that if a person died mysteriously and had symptoms clinically similar to COVID-19 cases, if they did not have a known close contact who had COVID-19, their death would not be considered to be connected to COVID-19 unless a post-mortem was done to confirm the cause of death.
During the peak of outbreaks, when contact tracing was overwhelmed, this could mean many were left out.
WHAT THIS MEANS FOR THE FUTURE
It’s imperative that we learn from these uncounted deaths, Moriarty said, adding that we could still be undercounting deaths right now.
“This could be very important as the Delta variant spreads,” she said.
If we don’t learn from our mistakes, it could cause more unnecessary deaths in the future.
“This is a real risk factor for how we’re going to manage future pandemics, or just how we’re actually managing the public health needs of Canadians in general,” Sinha said.
“If we don’t know about this until a year later, that’s a huge amount of lives lost that where we could have maybe taken more preventative measures.”
But it’s not just about fixing systems that might be broken, or creating national standards for reporting deaths.
“We as a society need to look at ourselves and our leaders,” Nnorom said. “And if at the end of this we look and see that people were left to die when it was preventable and predictable, that we need to hold our leaders accountable.”
“Moving forward, we need to have ethnicity, income based data and occupation based health data […] because collecting data is really the first step in recognizing the problems we have,” Brar said.
The cracks in the system that led to these deaths being left out of the official count need to be fixed, according to the report’s authors.
They say we need faster surveillance testing and faster reporting on the causes of death, so Canada is never again in a situation of simply not noticing half of the people who died in an epidemic.