In the middle of the spring long-term care lockdown, 87-year-old Devora Greenspon likened loneliness to a pain in her heart.
Now, with among 216 residents in 86 Ontario nursing homes, Greenspon is girding for the isolation of a second wave.
“Being alone in one room every day almost made me crazy,” she said in a written statement to the government-created Long-Term Care COVID-19 Commission.
Greenspon speaks for many residents who survived the nursing home lockdown or, after months alone, lost the ability to walk, eat or even coherently speak.
The wellbeing of those residents is supposed to be captured by care-plan assessments documented by staff and sent to the Canadian Institute for Health Information (CIHI), an independent not-for-profit funded by federal and provincial governments along with universities and research institutes.
Using these assessments, CIHI publishes quarterly “health indicator” data that show, among other things, a rise or fall in the incidence of worsened mood or depression, the ability to manage daily activities like dressing, bladder control, weight loss and pain.
It’s unlikely that the depth of Greenspon’s emotional devastation is included in the CIHI indicators.
That’s because early last spring, as the virus hit residents and staff, the province passed an emergency measures act that let homes opt out of those assessments, “unless they involve changes of a significant nature.”
Greenspon’s home, Extendicare Bayview, “paused” assessments so staff could better focus on “providing resident care, combatting the outbreaks and removing the virus from the homes,” Extendicare Canada said. As of July 17, all Ontario homes have resumed reporting.
— will ever be known.
University of Waterloo professor John Hirdes, a gerontology expert, told the long-term care commission tasked with examining Ontario’s COVID response that allowing homes to cease assessments means “they turned the lights off…and that was probably a mistake.”
Collection of the data helps individual homes track resident needs, pinpointing problems that need quick action.
The health indicator database for Ontario’s 626 homes also helps researchers understand the different ways the lockdown affected residents — and how some homes did better than others — to protect against isolation in future outbreaks.
At homes with severe outbreaks, where administrators were more likely to stop the health assessments, the information gap means staff did not have this key tracker of resident decline during the most recent CIHI reporting period of April, May and June — the height of the first wave.
In homes that continued the assessments, the data can offer lessons and, if the government calls for another lockdown that bans families or friends, a call for a different approach.
At the City of Toronto’s Seven Oaks home, which had a serious outbreak, health indicators show residents suffered in bladder control and the “activities of daily life” as COVID surged.
While the outbreak at the Region of Peel’s Sheridan Villa was not as severe as some, its data showed a small increase in depression.
Peel manager Mary Connell watched residents’ emotional slide, an observation later validated by her home’s assessment data. “I dread the thought they will try a lockdown again.”
New government-imposed restrictions have begun.
Homes in Toronto and Peel are now allowed to limit residents’ outside excursions with family or friends.
There’s a growing fear that another ban on visitors would force families to spend winter visits standing in the cold, watching through windows as loved ones spiral once again.
Hirdes, the gerontology expert, worries about the impact of the second surge on residents already enfeebled by the first one.
“The typical frailty trajectory we see toward death is one where people start off at one level and something bad happens to them and their function goes way down and when they come back up, they come to a level where their function is not quite as great as before and then they go along and they take another hit, and then they go down and come back and they’re not quite as good as they were before and eventually, they don’t have the capacity to deal with something.”
CIHI hasn’t determined how many homes stopped assessing the health of residents in April, May and June, though Hirdes said he believes most homes completed the assessments.
The Star obtained a worth of quarterly health indicator data for Ontario homes. When collected properly, the health indicators are assessed by a nurse who meets with each resident and speaks with personal support workers and families, although as Hirdes points out relatives were not in homes last spring.
The Star is using the data as an anecdotal snapshot of the first lockdown, when people like Greenspon sat in rooms and withered.
Peel Region’s Connell said Sheridan Villa used the worsening depression data to focus on individual residents who needed help.
One woman, a fashionista, lost her spark and spent her days staring out the window, unspeaking. Staff put a clothing mannequin next to the window and the woman began helping Connell choose new outfits for the mannequin, creating a new ensemble every week. Workers sat with her and read Vogue magazine.
“We know she likes the company of men and we don’t have a lot of men in the home so we bring men in from other departments and they have tea with her,” Connell said, adding that her mood has since improved.
Without indicators from some of the worst hit homes, Hirdes said the extent to which the pandemic may have worsened some residents’ frailty is unknown.
“Without those data, we don’t know how much worse off or how much more frail (residents) have become as a result of COVID. That increased frailty makes them more vulnerable to wave two.”
The Star sent CIHI examples of homes hit with serious outbreaks but whose generated by internal assessments showed a minor impact, or in some cases, slight improvements.
Those numbers seemed counterintuitive, given the loss of staff to care for residents or the fact that during these months the military or hospitals were called in to handle what they would later call dire conditions.
CIHI explained that while the year’s worth of data includes assessments over four quarters, homes that did not complete assessments during the pandemic surge show indicators based on only the prior three quarters.
At Hawthorne Place in North York, 51 residents died and the workforce was decimated due to infections, departures over family health concerns or the government directive that required staff to work in one home only.
Hawthorne Place was one of five homes given help from the Canadian Armed Forces’ Joint Task Force and later, was among 11 temporarily managed by hospitals.
On May 20, a Brigadier General detailed the conditions inside those five homes.
His report said residents at Hawthorne Place cried for up to two hours before staff came to help; some choked while being force-fed; others were moved in and out of bed forcefully.
When the health indicators for Hawthorne Place were released, they showed improvements in almost every indicator, including mood/depression, weight loss and pain.
Those were incomplete. Responsive Group, which manages Hawthorne Place for Rykka Care Centres, told the Star it followed the government’s emergency regulations and did not complete these assessments of residents during the outbreak.
“…Notwithstanding a global pandemic, we expect our indicators to improve every year,” the spokesperson said.
Responsive Group said the military’s report on Hawthorne Place triggered a 21-day inspection by the Ministry of Long-Term Care, adding that inspectors “could not corroborate several of the (military’s) findings.”
“These are just some of the examples where allegations by the CAF were not borne out and they painted Hawthorne Place as a home with pervasive issues as opposed to a home in crisis during a global pandemic that required staffing assistance for its residents. The report issued by the CAF is not a reflection of the quality of care Hawthorne Place aspires to or is known for,” the spokesperson said.
Responsive Group said it “took each of the allegations very seriously.”
“Anything less than an engaging and caring home for our residents is unacceptable and does not meet the high standards we set for ourselves each day.”
A CIHI spokesperson confirmed that it “received less assessments in 2020 Q1 as compared to previous quarters.”
The drop in assessments could be due to a staff focus on the pandemic instead of quarterly assessments or a “reduction in the number of residents,” CIHI said.
More than 1,800 long-term care residents died from COVID in the pandemic’s first wave, and many homes did not admit new residents during the outbreak.
Like Hirdes, Dr. Samir Sinha, Sinai Health System’s director of geriatrics, said CIHI’s long-term data is considered high quality.
Sinha said the indicators “tell you how this resident is doing and how can we better plan their care. But if you don’t actually do that assessment, you are almost flying blind.”
At city-run homes, Paul Raftis, general manager of Seniors Services and Long-Term care, said he and his team reviewed the health indicators to help protect residents from a second wave.
During the outbreak, residents’ daily activities declined as rehabilitation, physiotherapy and occupational therapy programs were suspended. They ate meals alone in their rooms and “behavioural symptoms” in both homes worsened, said Raftis.
To prepare for the second wave, Raftis said staff spoke to residents to find ways to handle the depression and loneliness.
This time, he said, homes will continue visits from two essential caregivers, using strict infection-control procedures, “even if the home experiences an outbreak.”
Some socializing will take place with cohorted groups, he said. Staff are being taught to connect with residents, he said — make eye contact, chat, comfort, or play music that connects to each person.
Residents in isolation will eat meals while sitting in the doorway of their room — eating together yet still physically distanced, he said.
Others will eat in the dining room, at tables set apart, so they can still have a conversation.
“We recognize that COVID-19 has had a significant impact on the quality of life for residents, their families, and staff members,” Raftis said.
Data analysis by Andrew Bailey
Moira Welsh is a Toronto-based investigative reporter for the Star. Reach her at . Follow her on Twitter: @moirawelsh