ST. JOHN'S, N.L. — Angela Day says residents of Newfoundland and Labrador deserve more information about the spread of COVID-19 in long-term care homes, and she worries being kept in the dark will have devastating impacts for families — including hers.
Day says if she had known there were cases of COVID-19 at the long-term care facility in St. John's where her grandmother lives, then she could have better prepared herself and her grandmother for a lockdown there.
Instead, she and her family struggled to get timely information. They found out through another resident at the home — her grandmother's sister — that the facility had 17 cases and was at risk of going into lockdown. Day says she worries her 96-year-old grandmother is now confused, lonely and deteriorating, cut off again from the rest of the world and unable to leave her room.
"I'm assuming all she does is look at the ceiling and hope to die," she said in a recent interview.
Day said her grandfather died in care in September — the pandemic restrictions hit him hard and he grew increasingly depressed, finally refusing to eat. She worries the same thing will happen to her grandmother.
"I don't know if I'll see her before she passes," she said, breaking down.
Unlike Ontario or Quebec, Newfoundland and Labrador doesn't publish data on COVID-19 cases, outbreaks or deaths in the province's long-term care or personal care homes. Health Minister John Haggie told reporters Thursday his government doesn't make that data public because of small case numbers and privacy concerns.
"We have such low numbers that identifying a particular facility with a case count or a death will lead to people being identified," he said. "As much as I want to be open and transparent as far as one can possibly do that, I will not do it at the risk of jeopardizing people's personal health information."
Ontario Tech University assistant professor Vivian Stamatopoulos says that argument doesn't hold up.
Ontario lists facilities with active outbreaks, including the number of cases and deaths for each. If there are fewer than five in either category, the listing says so, and a number is not provided.
Newfoundland and Labrador "could and should" do what Ontario does by listing cases by facility and indicating if there are too few to report without breaching residents' privacy, Stamatopoulos said.
"I think in general, there's a lot of non-transparency when it comes to long-term care," Stamatopoulos said in an interview. She said there should have been a national, government-led effort launched at the onset of the pandemic to collect and publish in-depth data to keep people informed.
"I don't think there has been more dialogue attributed to any sector during this pandemic than long-term care. It was the most badly rocked sector; we know it had the vast majority of deaths. The fact that we weren't reporting this almost makes you wonder why."
Individual care centres have an obligation to provide information, but that currently rests on the whims and abilities of individual administrators who are dealing with staffing shortages and outbreaks, Stamatopoulos said. "I don't imagine it would be that difficult to have somebody at every home tasked with uploading accurate information at the end of every week to a central federal website that could have been created two years ago."
Stamatopoulos said ultimately, it's the lockdowns and isolation that are causing the most harm to people in these homes. She said there's "no question" the lack of reporting requirements and transparency allowed the sector to shirk other obligations — like installing HEPA air filters or providing more rapid testing — that could ease the reliance on lockdowns.
As for Day in St. John's, she said families have a right to know what's happening to their loved ones in care, adding the lack of information is only compounding a situation that is already fraught with fear and unknowns.
"It kind of makes you lose faith in the system," she said.
This report by The Canadian Press was first published Jan. 21, 2022.
Sarah Smellie, The Canadian Press
