Shirley Egerdeen had a fondness for fish and chips from Joey’s Seafood, detective dramas and diet root beer. She worked at, and retired from, the old Schneider’s plant, had a feisty sense of humour, loved animals, scratch cards and find-a-word puzzles and, though she had no children of her own, her close friend, Tracy Rowley, was like a daughter to her. “See ya, Toots,” she’d affectionately call out after their visits or outings to the mall.
Shirley’s family said her body was the third one taken out of Forest Heights on April 22.
Egerdeen, sister to Nancy and Robert, predeceased by parents Gertrude and Charles, was 74 when she perished from COVID-19 some three months after arriving at Forest Heights, a private, for-profit long-term care home in Kitchener, Ont. She had lived in her own apartment until last Christmas, when pneumonia sent her to hospital, and when she could no longer get in and out of her wheelchair unassisted she was moved to Forest Heights and into a third-floor room shared with three perfect strangers. “I always promised her that when she felt better she would go home,” Tracy said.
Tracy visited every day, bringing Shirley her favourite foods and watching TV together, until visits were suspended in March. In April, Shirley was infected with COVID-19. When asked how Shirley would be quarantined, Tracy was told that a curtain would be pulled around her bed.
Tracy had paid for a phone for Shirley, and she kept trying to call up to her room, but Shirley wouldn’t answer. A social worker said Shirley wasn’t eating so well, but that she had no temperature. The night before Shirley died, something tugged at Tracy. She called the home and asked staff to place the phone on Shirley’s chest. “I just need her to hear me,” she told them. Shirley’s breathing sounded heavy, laboured; Tracy said she could hear a rattle in her throat. She stayed on the phone for an hour. She told Shirley how amazing she was, and how she wished she had done things differently, how “I would have figured something out — I wouldn’t have left her there if I thought for a second I was going to lose her. And she never replied.” When staff went in to change Shirley’s dressing the next morning, she was no longer breathing.
In September, the province of Ontario lifted the mandatory management order that was placed on Forest Heights in June. After 90 days, and the death of 51 residents, management reverted back to Revera Inc., one of Canada’s largest private, for-profit providers of long-term care.
In all, the virus infected 874 residents of Revera long-term care homes in COVID’s first wave, killing 266 of them, a fatality rate of 30 per cent. Eighty-seven of its homes went into outbreak during the first wave.
A report released in early December by an expert advisory panel struck by Revera
to review the pandemic’s “lamentable” impact on the lives of its residents and staff described confusion and chaos. The virus was unknowingly carried into homes by (often unprotected) staff that had no idea they were infectious and, once inside, it flourished. Ontario didn’t start regularly testing residents and staff for the SARS-CoV-2 pathogen that causes COVID-19 until months after the virus’ debut, and only after most of those who would die had already succumbed. Masks, gloves and gowns were scarce. Staffing collapsed as workers became sick themselves, went into quarantine or were too frightened to show up for work. Homes received “clashing instructions” from local health authorities, the panel wrote, about how to separate the healthy from the sick in homes with virtually no spare rooms. In the early days, few recognized COVID looks different in seniors. Instead of fever and cough, delirium, fatigue and anorexia often are the first symptoms. People don’t seem themselves. They sleep more than usual. They stop eating.
Alarmingly, many doctors under contract with homes to provide medical care were in absentia. They chose not to visit, despite repeated requests that they do so. Some doctors, older ones, were uncomfortable going into homes, and declined to visit in person. Some worried they didn’t have proper training in infection control, or knew the proper order in which to don gown, gloves, goggles and masks. While family doctors were urged by their governing bodies to provide as much virtual care as possible, to reduce the risk of the virus spreading, that doesn’t work terribly well with a 92-year-old with dementia. The homes’ doctors were often “unfamiliar with the online platforms needed to run appointments remotely,” Revera’s 10-member expert panel wrote, while elderly residents “found it difficult to participate in virtual consultations,” especially as they were sick and dying.
“Managing an insidious virus that spread, often asymptomatically, both in the communities where personal care staff lived, and in the four-bedded rooms where some residents slept, was an impossible task,” former hospital CEO and cancer surgeon Dr. Bob Bell, the panel’s chair, wrote.
Others saw the report as a communication strategy to deflect blame from Revera to the wider system, and said too many doctors simply abdicated their responsibilities.
Now, deep into Canada’s second wave, homes are being pummelled once again. As of Dec. 11, 3,107 new cases of COVID had been reported in Canada’s long-term care sector over the previous seven days. In Ontario, more than 700 residents have died since the second wave hit long-term care on Aug. 30. British Columbia reported 26 deaths alone on Dec. 8. Fifty-two residents have died at Revera Maples Long Term Care Home in Winnipeg; 20 dead at Westside long-term care home outside Toronto
The “flattening?” It’s gone, geriatrician Dr. Nathan Stall recently tweeted. Despite what he describes as vaccine euphoria, despite promises to prioritize long-term care residents, care is still being compromised. There often aren’t enough eyes to identify who is sick and who is not, and “there is still a lot of winter ahead,” he said.
When COVID-19 hit in late February, the initial face of the pandemic was hospital meltdown. Officials feared zero slack in the system would leave Canadians vulnerable to the scenes playing out in Italy and New York. Masks and other personal protective gear were diverted to hospitals. Non-urgent surgeries were cancelled, ventilators hauled out of storage, wards emptied and as many people as possible “decanted” into nursing homes. All eyes, every effort, focused on readying hospitals for a COVID-19 crush, while a highly contagious virus quietly began circulating in nursing homes. The result: outbreaks in nearly 1,300 sites across 10 provinces in the spring alone. Twenty-nine lives lost at Pinecrest Nursing Home in Bobcaygeon. Forty-three deaths at Maison Herron in Montreal’s West Island. Sixty-eight at Camilla Care in Mississauga.
All told, deaths would dwarf mortality in the rest of the Canadian population: 9,771 deaths as of Dec. 17, the vast majority in Ontario and Quebec, accounting for 73 per cent of the country’s COVID-related casualties. Some were abandoned. Some died of dehydration. Still more are dying.
The grim toll has forced “a national reckoning,” Bell’s team wrote. But the cracks split wide by COVID were known long before the pandemic hit. An unsympathetic virus simply exploited them. Out-dated homes with four-bed wards and communal bathrooms, a short-staffed, underpaid, largely unregulated workforce with high burnout and no voice, overcrowding, poor infection control — had been exhaustively and wearily documented, over and over again, for decades, a Royal Society of Canada working group on the long-term care catastrophe reported in June. Despite commissions, inquiries and promises, nothing changed. “Not really, not fundamentally,” the working group wrote. Those who died deserved a good death, they said. “We failed them.” In the first wave, 16 long-term care workers also lost their lives.
The ruination has many Canadians uneasy with the prospect of ending up in care, the Royal Society of Canada wrote. The sector is currently home to nearly half a million people, but Canada is about to become super-aged: More than 20 per cent of the population will be 65 or older within the next five years.
Will we ever learn?
What went wrong? The better question might be what didn’t? By February, the Diamond Princess cruise ship should have been a clue congregate settings were going to be hit hard. Was there enough time to avert tragedy, given the failings of the system? Not all outbreaks could have been prevented, but a substantial fraction of them, “yeah. No question,” infectious disease physician Dr. Allison McGeer told Ontario’s long-term care COVID-19 commission.
At the tragedy’s core is the indelible stamp of ageism, and attitudes that COVID is largely a disease of the old, the frail and weak, and that somehow the rest of society is being held back unfairly because of pandemic restrictions. It creates an asterisk beside the death statistics, said those who care for the elderly, the implication being, “They had a good run, they were towards the end, anyway.”
It’s a sentiment reflected in emails the
has received since a Toronto man stepped off a plane from Wuhan in late January carrying the novel coronavirus inside his body. “In 2019, people in their 80s and 90s died without comment. Now when someone that old dies of COVID the media treats his death as an existential tragedy. Well, that’s stupid,” one wrote. Emphasizing long-term care deaths only pushes the fear narrative, many have said. The message is blunt: this should be about
Most of the population is not at high risk of having a bad outcome from COVID. “For every 1,000 people infected with the coronavirus who are under the age of 50, almost none will die,”
Nature reported in August.
For people in their 50s and 60s, five out of 1,000 will die. For people in their mid-70s or older, some 116 will succumb.
People in long-term care are older and frailer than seniors living at home. Sixty per cent of long-term care home residents have dementia; 70 per cent have heart and circulatory system issues. In Ontario, a typical resident is 84-years old, with a remaining median life expectancy of 18 months.
But Stall has little doubt lives were left on the table, and that people who potentially could have been saved with supportive care weren’t, because of decisions not to transfer to hospitals to free up hospital space. Revera says its homes were discouraged from doing so. Some families were told hospital treatment would be utterly futile, because there were no proven therapies then. Only a minority of Ontario nursing home residents who died of COVID-19 were hospitalized prior to death,
Stall and his colleagues reported in November.
Most disturbing for Stall, the transfers were lowest during the peak of the pandemic’s first wave. “You would expect, based on the level of chaos that was going on, and the number of deaths, that you would have higher-than-normal level of transfers at that time,” Stall said.
He worries others died dreadful deaths, alone and afraid, their families shut out, and without medications or oxygen to treat end-of-life symptoms like breathlessness, pain, delirium and psychological distress.
Hospital outreach teams went in. They were able to provide some of that acute palliative care. And, as hospitals and ICUs realized they weren’t going to be crushed, and that there was all this empty space, as the level of catastrophe in nursing homes came to light, the rate of hospital transfers went up.
“We’re in a much more precarious situation now,” Stall said. Critical care beds in COVID hotspots like Manitoba are near or over maximum capacity. Ontario hospitals have been told to activate their emergency plans. Hospitals, Stall said, are facing the fear that was never realized in the spring. Meanwhile, COVID is escalating in the 80 and older. Several Winnipeg doctors said they are seeing fewer elderly people in hospital than they would expect to see. Some worry their conditions are not monitored enough to even know when to offer to send them to hospital. During the Maples outbreak, paramedics responded to multiple 911 calls one weekend to treat 12 residents. Two died by the time paramedics arrived. One was rigid and cold, Stall said. Dead for several hours. “What was their hesitation to calling 911? Why was that not done?”
Even before the pandemic, many nursing home residents have advance directives that state “do not transport to hospital,” do not intubate or do not resuscitate. But some families were refused transfer, “and that’s absolutely wrong,” said palliative care specialist Dr. Amit Arya. “It is everyone’s absolute right to seek emergency services with a disease like COVID-19.”
Still, Arya was deployed to homes with little doctor presence and a whole unit of people — 32, 64, even 100 — sick with COVID-19. Most families, when given the option, didn’t want their loved ones taken to hospital, because lying on a gurney in an emergency room hallway is perhaps equally as miserable, and maybe worse. Emergency rooms aren’t designed to provide the care long-term care residents need, Arya said. Do they know how to feed someone with dementia, and do they have an hour to do it?
The greatest failure, Arya said, was that many homes were barely managing before the pandemic hit.
It’s not that all for-profits did badly, but in Ontario homes that had outbreaks, the for-profits had twice as many residents infected, and 78 per cent more deaths than non-profit homes, research by Stall and colleagues shows. For-profits have a higher proportion of older, out-dated homes, as well as chain ownership — and chain ownership usually means lower levels of staffing, and more double and quadruple rooms. “It’s probably a bad idea to have a lot of people sharing a room and a bathroom, especially when you’re in the middle of a pandemic with a highly transmissible infection,” Stall told the Ontario COVID-19 commissioners, a situation playing out again. “Leaving homes crowded like this in the face of surging transmission is just leaving them lame ducks,” he said.
Ontario’s response was lopsided, Stall said. It prioritized the lives we most identify with and left nursing homes to their own devices, even though, by the end of March, Spanish soldiers were entering nursing homes and finding people dead in their beds. Older lives were viewed as expendable, Stall said in an interview. “It wasn’t until there was a huge, catastrophic number of deaths before people did something.”
The deaths define the pandemic. Stall also worries about the mental wellbeing of those who lived through the crisis. Prescriptions for anti-depressants and anti-psychotics increased in Ontario’s nursing homes from March through to September,
a study led by Stall shows
, increases “out of proportion to secular trends.” Where there aren’t enough people to provide care, when people are in lockdown with no family, no social interactions, no physical activity, no fresh air, people with dementia can become agitated. They might grab onto others, push or hurt themselves. When a home is in crisis, Stall said, drugs become a chemical restraint.
Amid tragedy, there were bright spots. Long-term care homes in B.C. fared better — better coordination between homes, public health units and hospitals, according to a CMAJ report. In Ontario, Arya knows of doctors in care homes who stepped up during the pandemic, holding weekly town-hall style meetings, readying medication stocks. Personal support workers and other staff worked physically and mentally brutal 16-hour shifts, some living in hotels, separated from family. Hundreds responded to calls to go into hard hit facilities.
The average home in Ontario did reasonably well, many quite well, according to testimony given to Ontario’s COVID commission. Two-thirds of Revera homes did not have an outbreak. Of those that did, more than half involved a single case. Some homes across the sector were lucky. They had little community spread of the virus, so less chance of an infected person walking through their doors.
In other places, it was utter abandonment. No doctor presence for six weeks, “and nobody knew about it,” Arya said.
Revera, wholly owned by one of the largest pension funds in the country, the Public Sector Investment Board, has heightened screening protocols. Plexiglas dividers are being installed in rooms. The corporation has rolled out a “pandemic playbook.” It has plans to redevelop its stock of outdated sites. Construction applications were submitted years ago.
In the first wave, Ontario had up to 40 deaths a day in long-term care, Bell said. “In Wave 2, that number has generally been below 20. So, definitely Ontario is better protected than it was.”
And while we’re living longer, while medicine has “transformed the trajectory of our lives,” the bottom eventually falls out, Atul Gawande wrote in Being Mortal. “We reduce the blood pressure here, beat back the osteoporosis there, control this disease, track that one,” until eventually, weak and frail, “managing without help is no longer feasible.” Already, 430,000 Canadians aren’t getting the home care they need. When the options run out, nursing homes become the final landing place.
Long-term care grew out the context of the poor house, Bell said. Caring for the poor and aged. “That has changed dramatically in terms of what we expect for our parents and grandparents, but has our thinking caught up — the thinking that allows for four people to be in the same room?”
What bothers Bell most is the “blame thing,” the finger pointing. “It’s nobody’s
this happened. It was a perfect storm of features that came together to put residents at risk.”
Shirley Egerdeen wasn’t a small woman. COVID is listed as the cause of death on her death certificate, and obesity an underlying condition.
When Tracy saw Shirley in her casket, she remembered the photo taken of Shirley the day she moved into Forest Heights, three months earlier. “You wouldn’t think it was the same woman,” said Tracy, a representative plaintiff in a class-action lawsuit against Revera. “She must have lost 100 pounds.”
Days before Shirley died, Tracy was told Shirley seemed lethargic. It was getting harder to wake her. “But I think it was still not in their minds that she was going to pass.”
The action against Revera is one of multiple pandemic lawsuits against long-term care homes expected to tie up courts, for years.
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Source: National Post Quebec Nordiques