There’s no wide-scale post-mortem COVID-19 testing in Ontario. Why experts say this is a ‘national embarrassment’

Arthur Harek was rushed to hospital four times in the days leading up to his death.

The 95-year-old had trouble breathing. He had existing heart issues but no history of respiratory illness. So struggling for breath was unusual for Harek, a retired farmer who drove a tractor until he moved into a Hagersville retirement home five years ago.

"He was a very strong man," his daughter, Barbara Lalonde, said.

Doctors attributed Harek's condition to his heart and released him three times to his retirement home, Anson Place Care Centre, Lalonde said. When Harek died the day after he was finally admitted to West Haldimand Hospital on March 16, the official recorded cause: failure to thrive.

A few days later, when Lalonde and 11 other family members began developing COVID-19 symptoms like fevers, headaches, coughs and chills - they all eventually tested positive for the virus - they wondered if Harek had it, too.

But they'll never know. He was not tested post-mortem. Not many dead in Ontario are.

The absence of a co-ordinated post-mortem testing strategy prevents a more complete scientific and demographic understanding of how the virus works, who it kills, why it kills and what underlying medical conditions put people at greater risk, said Colin Furness, an infection control epidemiologist at the University of Toronto.

"It's a national embarrassment that we're not doing post-mortem testing," Furness said, noting that COVID-19 is an "asymptomatic pandemic.

"How are we going to say we understand this disease if we don't do this kind of measurement?"

Furness said post-mortem sampling would also detect missed virus-related deaths.

"Every government is undercounting the dead," Furness said. "Everyone is doing it."

Lalonde said if a post-mortem sample had shown her father was infected, she believes two things would have happened: his funeral would have been restricted to family members and the test information would have raised an earlier red flag for Anson Place, where 27 senior residents have since died.

The privately owned centre, which has 61 long-term-care beds and 40 retirement units, is home to one of the largest COVID-19 outbreaks in seniors homes across Ontario. Data compiled by the Star shows 102 cases in staff and residents so far.

"We would never hurt anyone," said Lalonde, adding all funeral guests were later tested but only family were infected. "Dad wouldn't have, either."

Ontario has ramped up its testing capacity for the coronavirus - the goal is 14,000 tests by the end of the month - but that plan does not include a wide-scale sampling of the dead. Experts say in this pandemic, it should.

Last week, a California discovery that is reshaping COVID-19 discussions was announced.

Autopsy results for two Santa Clara residents who passed away in their respective homes Feb. 6 and Feb. 17 confirm the man and woman died from COVID-19. These forensic findings indicate the virus was moving through the U.S. earlier than previously thought. California Gov. Gavin Newsom has directed all counties to review death data, such as coroner's autopsies, going back to December 2019 to search for overlooked outbreak clues, according to U.S. media reports.

Here, Ontario's Ministry of Health says post-mortem swabbing "is being conducted when the case circumstances indicate testing," according to a statement form spokesperson Denelle Balfour.

"The lead responsibility in infectious diseases is Public Health (Ontario)," Balfour said.

"The Office of the Chief Coroner provides any investigative information that may help inform their understanding of this outbreak. These testing strategies are determined by Public Health and the coroner's office works together with the local (public health units) regarding the coroner's investigative role in determining cause of death."

She also said all deaths in long-term-care homes are reported to the coroner but only those who meet certain criteria under the Coroner's Act are investigated.

"The coroner's office has been working closely with the (Health Ministry) and other related sectors with regard to COVID-19 deaths," Balfour said.

Last week, the province announced its increased testing will include taking samples of all residents and staffs in seniors homes, like long-term-care facilities.

Lalonde, who said she could feel rattling when she put her hand on her father's back as he drew shallow breaths in the hospital, now believes her father had shown classic COVID-19 symptoms for days.

"I don't understand why he wasn't tested," Lalonde said.

Vital signs absent on Charles Street East

Nikki Renaud cared deeply about her friend Al Honen. They'd met in North Bay years ago, lost touch for a while, then found each other again in Toronto. It made her happy to have him back in her life; the 51-year-old was kind, funny, generous and smart.

"Al had a good heart," said Renaud, 39. "He was selfless."

For homeless or street-involved people in Toronto, supportive friends are a comfort. Renaud and Honen live in tents around Sanctuary Toronto, a Christian outreach organization on Charles Street East, just off Yonge Street. The March 6 death of a popular, well-loved man, Chris Vanhartskamp, sent shock waves through the Sanctuary community, already reeling from a steady stream of passings.

"We've lost a lot of friends in the past year," said Renaud, who attended Vanhartskamp's funeral.

So, when Honen walked out of his tent and complained of seizures just before Easter weekend, Renaud and her friend Rob were worried.

"He came and sat with us on the bench and he looked like he was scared," Renaud recalled. "He was crying."

Renaud ran to summon a Sanctuary nurse, who took Honen's temperature. He had a fever but could not be talked into going to hospital, not even by Renaud; she sensed he was afraid.

On the Saturday before Easter Sunday, Renaud and her friend Rob dropped by Honen's tent to check on him. Honen was having a seizure, clearly in physical distress, Renaud said. He again refused her plea to go to hospital. Renaud phoned Sanctuary outreach worker Lorraine Lam - Honen attended her 2018 wedding - who began racing to the church. Renaud and others waved down City of Toronto outreach staffers who happened to be in the area. 911 was called. During that short time, Honen became unresponsive.

"We couldn't wake him up. Someone dragged him out of the tent. He didn't have a pulse and his eyes were open, oh my God," Renaud said, weeping softly. "It was scary to see."

Amid the chaos, Kevin Durance, who volunteers and works part-time at Sanctuary, arrived. The 48-year-old hustled over to the tent where a city worker had initiated CPR. He volunteered to take over the chest compressions, realizing as he did so that the stricken man was his friend, Honen.

"He was in imminent danger, a life-and-death situation," Durance said of assisting Honen. "I was aware of the (infection) risk but he needed help."

It was a frantic scene. Paramedics raced in. They got a pulse back. Barely. Honen did not improve in hospital over Easter Sunday. His daughter Caitlin rushed to his bedside from Barrie. He died Monday, April 13.

Honen was tested for the coronavirus while hovering between life and death on a ventilator. It was negative. He died of pneumonia, friends say.

In a vulnerable population living outside of the shelter system, it was a small bit of reassurance that Honen was not carrying the virus. Renaud said she had a fleeting thought about exposure to COVID-19 when she tried to rouse Honen but didn't hang back.

"His life was on my mind, too," Renaud said. "He didn't make it, but we did all that we would do for anyone we cared about."

His situation meant he got a test in a scenario where many like him - dead or alive - likely won't. The recent push to mass-test the homeless population is focused on those using shelters, not those who sleep rough. Renaud said she has not been tested, but would like to be. It's unknown if the homeless dead are routinely swabbed in Toronto or elsewhere in the province.

Outreach workers have told the Star that overdose deaths are mounting among Toronto's homeless community, particularly during the pandemic when overdose prevention sites have been closed or had operational hours restricted. When asked if these type of deaths would merit post-mortem coronavirus testing, Balfour, the Health Ministry spokesperson, said "we approach every death with an open mind and approach testing as indicated by case circumstances."

"We would proceed with COVID-19 testing if we have a concern that COVID-19 was a direct contributor to the death," Balfour said.

"Our approach to what methods of investigation are applied is not defined by social circumstances."

Colin Furness, the U of T epidemiologist, said routinely swabbing dead people in Ontario would not be an onerous task.

There are two types of COVID-19 swabs applied in death investigations, according to the Ministry of Health: nasopharyngeal and throat. According to Statistics Canada, 109,173 Ontarians died in 2018-19.

"I'm mostly concerned with 'What is the activity of this virus?' " Furness said, adding "we want to know demographically who the virus attacks."

"If the cause of death is not clear during a lethal pandemic, then you swab them. I don't accept that there are too many bodies to do it."

Dr. Stephen Hwang, a professor in the department of medicine at the University of Toronto, has medical and research expertise in working with the city's homeless community. In his opinion, post-mortem testing for COVID-19 would need to be done on a sample of deaths in the general population - not just among people experiencing homelessness - to produce a fuller picture of disease prevalence.

"We would have to receive a directive from the province to initiate this type of testing on a wide scale," Hwang said of post-mortem sampling.

"It should examine deaths across broader society, not target individual groups."

Funeral in the spotlight

Three weeks after Arthur Harek's death, his family's grief turned to anger. Barbara Lalonde, of Waterford, said the Haldimand-Norfolk Health Unit suggested the deadly outbreak at Anson Place Care Centre could be traced back to her father's funeral.

Lalonde said she first read about it in the local newspaper, the Simcoe Reformer, in early April and that no one from public health contacted her.

"My family was just calling me and texting our siblings and saying, 'What the heck is going on here?'" she said.

"How can they blame us for this?"

Lalonde said no one who attended the March 20 funeral ever returned to Anson Place Care Centre, so it could not have come from that group. She also claims staff at the 101-room facility told her the virus was circulating in long-term care before her father became ill.

The Ontario Superior Court has ordered four long-term-care homes, including Anson Place, to stop "breaching" the Ontario chief medical officer's protective directives for staff at facilities where COVID-19 outbreaks are present. The order came after the Ontario Nurses' Association requested the injunction. The others homes are Eatonville Care Centre and Hawthorne Place in Toronto, and London's Henley Place.

Matt Terry, spokesperson for the Haldimand-Norfolk Health Unit, said in an emailed statement that "as a general construct, the focus of an epidemiological assessment of an outbreak is to gain additional understanding" and that "assessment of this nature cannot be used to attribute blame to any individual."

"Like all health units, the Haldimand-Norfolk Health Unit takes the privacy of residents extremely seriously," Terry said, adding it does not comment on health-related matters pertaining to individuals.

"The Haldimand-Norfolk Health Unit's responsibility is to advise long-term-care facilities, such as Anson Place, on approaches to address infectious disease outbreaks. This includes COVID-19."

Terry did not address a question from the Star about the date of the first confirmed coronavirus test for a resident or staff member at Anson Place. Lisa Roth, executive director of the home, did not respond to emailed questions from the Star.

Arthur Harek's COVID-19 status will remain a mystery and as his family looks for answers, experts say each and every death matters in building a full epidemiological model of the virus.

The University of Ottawa's Ann Jolly is an infectious disease epidemiologist who specializes in prevention and control research. She said post-mortem testing, regardless of where the person died, would strengthen the pandemic battle.

"We have to start doing it just because we need to know where the virus is going," said Jolly, currently a visiting research professor in the medical humanities at Penn State University.

"It used to be the law in many places if you die at home, the coroner has to step in because it's classified as an unexpected death. I would expect the coroner to realize that now people are dying (from COVID-19) at home; we have to log this somehow."

Colin Furness, the U of T epidemiologist, said he called Ontario's lack of post-mortem testing a "national embarrassment" because without it, "we will do nothing more than chase our tails if we are not learning about this virus as we are fighting it."

"You have to know your challenges in any kind of contest and the stakes are really high here because we've got a really vicious, very efficient (virus)," Furness said.

"If all we're doing is fighting fires and keeping our eyes blindfolded in terms of what we're dealing with, this is a disaster. One day this pandemic will subside and will we be able to say: Do we know how the virus behaved? Do we know who's vulnerable when we have a second wave or subsequent wave? Do we know what to expect?" he continued.

"And if we're not figuring out who the virus kills, then we don't know anything at all."

Mary Ormsby is a reporter and feature writer based in Toronto. Reach her via email: mormsby@thestar.ca