André Picard is a health columnist for The Globe and Mail. His new book Neglected No More: The Urgent Need to Improve the Lives of Canada’s Elders in the Wake of a Pandemic will be published in March.
“A bit, but clearly not enough.”
That is Miranda Ferrier’s pithy, but all-too-accurate answer to the question: Have we learned anything from the devastation that happened in long-term care during the first wave of COVID-19?
“When this virus came along we literally had no plan to protect residents and workers during a pandemic and I’m not sure we have one now,” says the president of the Canadian Support Workers Association. “In some ways, we’re right back where we started.”
The pandemic claimed the lives of at least 7,000 elders living in nursing and retirement homes between March and August. More than 600 homes recorded COVID-19 deaths, almost all of them in Quebec and Ontario. One in every seven elders who was infected died. Those living in these group settings were 77 times more likely to die than their counterparts still living in homes and apartments.
Since September, there have been at least 2,000 more deaths in congregate settings such as nursing and retirement homes, and long-term wards in hospitals. Hundreds of facilities have been affected – some of them for a second time. The pandemic has also spread its tentacles more broadly; Manitoba, which was largely unscathed by the first wave, is now struggling with outbreaks in dozens of the province’s nursing homes, and the most deadly ones in the country, during the second wave. Alberta is not faring much better.
This second wave of death in facilities that house elders was not inevitable, but it was largely predictable. The underlying factors that helped fuel the deadly spread of coronavirus in congregate settings earlier this year – overcrowding, chronic staffing shortages, outdated infrastructure, lack of testing, lax oversight and more – have not fundamentally changed.
Months of lockdown have also taken a huge toll on residents. Being isolated has left them depressed, inactive and deconditioned - losing muscle mass and cognitive functions from lack of stimulation - and more vulnerable to illness and death. Their caregivers, tormented being left outside looking in, are angst-ridden and struggling, too.
Worse yet, the pace of infection is accelerating as coronavirus cases soar in the community. Given the way the virus kills slowly, deaths will likely keep climbing even when (or if) the epidemic curve flattens. If the pace of infections continues at its current rate, there could be another 2,000 deaths in long-term care by the new year.
It didn’t have to be this way. But little has been done to change the underlying conditions of workers and residents in these homes, and alternatives such as home care and subsidized housing still aren’t available to those who don’t want to be institutionalized, so a second round of pandemic ravages was cruelly predictable.
Frail elders, those living with dementia, heart failure, chronic obstructive pulmonary disease and other chronic conditions, are easy prey for pathogens at the best of times. When infectious disease experts starting uttering the dread p-word - pandemic - way back in January, alarm bells should have gone off for those responsible for the care of the vulnerable, from operators of the homes to government regulators and public health officials.
Yet, in Canada, the ramparts went up around hospitals, while facilities that house nearly 400,000 elders were largely left to their own devices. Even more perversely, hospitals discharged non-urgent patients to make room for a feared onslaught of pandemic patients, and some ended up in care homes.
More than 7,500 people live in hospitals in this country, most of them frail elders with dementia who are awaiting a spot in a suitable long-term care home. They are known as “alternate level of care” patients, an Orwellian term meaning they pretty well don’t get any care. When COVID-19 arrived, many ALC patients were dispatched to long-term care homes. The timing couldn’t have been worse.
There was no evil intent, but there were blinkered policy choices forged by history.
In 2004, Canada was one of the hardest-hit countries in the world by SARS (Severe Acute Respiratory Syndrome), with 251 probable cases, 187 suspected cases and 44 deaths. In retrospect, those numbers seem almost laughable - but the pandemic was a big deal at the time. It turned out that SARS, also caused by a coronavirus, was a nosocomial infection, meaning it spread almost exclusively in hospitals. Deadly infections were transmitted to and from patients and health care workers because of inadequate gloving, masking and cleaning.
When pious vows were made that this kind of disaster would never happen again, and pandemic plans were written, hospitals were front-and-centre. So, when another coronavirus, SARS-CoV-2, came along in late 2019, hospitals became a focal point. They had to be protected at all costs, and they have fared tremendously well.
The price for battening the hospital hatches was paid by elders and workers in other institutions. When the first nursing home outbreaks occurred in the spring, staff in many nursing homes had little or no PPE. There were shortages, so protective equipment was reserved for hospitals.
The lack of masks, gloves and gowns made it easy for the virus to spread; combined with staff that worked in multiple homes, homes that had three- and four-bed ward rooms, and an inability to isolate residents who were suspected of being infected, it spread like wildfire.
There were homes where nearly 100 per cent of residents and staff were infected, and where the death rate exceeded 40 per cent. But there were little pockets of death everywhere, in almost 1,000 facilities from coast to coast.
The novel coronavirus was nasty but the underlying issue was a longstanding one, poor infection control in nursing homes. Outbreaks of illness such as influenza, norovirus, Norwalk, C. difficile, MRSA, are commonplace in eldercare facilities, but deaths in the single and double digits were just accepted as business as usual.
It was only when elders began dying by the hundreds and the thousands that we really started paying attention.
Thankfully, some of these problems have been resolved. Testing has been stepped up. PPE is now available and no longer taken for granted. Virtually every province has introduced “one facility” rules, meaning staff cannot work in more than one long-term care home; that is significant because 30 per cent to 40 per cent of workers were juggling part-time gigs in various facilities. (Employers resist hiring full-time as a way to reduces the cost of benefits.) When residents of care homes die, they are now a little less likely to die alone.
There’s still room for improvement. The province hardest hit by COVID-19, Quebec, has not banned work in multiple homes. (The province feels any restriction would exacerbate already grave staff shortages.) Even the provinces which have “banned” staff mobility make exceptions, especially for casual workers, as they struggle to get staff.
Nursing homes have stopped admitting new patients to three- and four-bed rooms but, typical of the half-measures introduced between the first and second waves, they have not eliminated these rooms altogether. (To be fair, getting rid of those ward-style rooms would eliminate as many as 5,000 beds, and how can you justify that when there are more than 40,000 Canadians waiting for a spot in long-term care.)
Ontario has vowed to add 3,000 long-term care beds, as well as increasing staffing. But bolstering institutional living alone, without continuing to offer better options for care at home and independent living is almost the worst thing can happen. We need better care and more options for elders, not more access to care they don’t really want.
In Canada, institutionalization is the default setting, but lots of elders and their families would prefer care to be delivered at home. But with strict limits on the hours of publicly-funded care available and most families unable to care alone for loved ones with high needs, such as those with advanced dementia, that approach is not a viable option.
During the pandemic that Sophie’s choice – a move that is dreaded vs. no care at all - has not changed. If anything, home care has become less of an option because the sector was pummelled during the pandemic. Most home services were shut down and many of the workers jumped to the long-term care sector when wages were increased and full-time jobs created.
One of the big questions going forward is: Will demand hold up, given the gruesome outcomes during the pandemic? Poll after poll has shown that Canadians do not want to end up in institutional care, and it’s hard to imagine that their trust has not eroded further. So how much longer can politicians and policy makers resist demands for change?
The shockingly low pay of personal support workers – as little as $13/hour in some provinces – was often cited as one of the cause of staff shortages. The lack of benefits such as paid sick days meant that workers didn’t stay home if they felt ill; they couldn’t afford to do so. Some provinces provided pandemic pay raises of up to $4 hourly and makeshift sick days. But those programs were temporary.
With unprecedented attention on the state of nursing homes, provinces began making grandiose promises, from building more beds to bolstering staffing.
Quebec, again, was the most noteworthy. At the height of the crisis in CHSLDs (centres d’hébergement de soins de longue durée), the name Quebec gives to long-term care homes, Premier François Legault vowed to hire 10,000 new orderlies on top of the 40,000 already employed in the sprawling system.
Shockingly, the province actually followed through on the pledge, but it proved more difficult than imagined. After Quebec promised full-time jobs paying $49,000 annually, plus benefits, more than 80,000 people applied.
A total of 9,788 applicants were selected and trained over the summer, but only 5,328 graduates are now employed. The work is backbreaking and not for the faint of heart, so there is a lot of attrition. In a normal year, almost one-third of the work force leaves, and that rate of turnover seems headed higher given the pandemic stresses. The province knows this and has put out a call for 3,000 more applicants, but only 700 have answered the call.
There have been numerous media reports that many of the hastily trained orderlies are overwhelmed, unhappy and eager to get out. But, under the terms of their contracts, those who don’t work at least one year must repay the $9,000 in training costs.
Other provinces have also acted on staffing woes. B.C. allocated $680-million in additional funding to its 680 long-term care and assisted living facilities that, among other things will allow each facility to hire three more full-time workers.
What is not known is if, overall, there are actually more staff in facilities. Thousands of orderlies and nurses left their jobs during the first wave of the pandemic and it’s not clear how many have returned.
One unfortunate response to shortages has been watering down training. Quebec’s new work force is getting 375 hours of education, as opposed to the previous minimum of 870 hours.
There are no national standards so training varies wildly around the country. In Ontario, for example, personal support workers take an intense 32-week college program. There are also many fly-by-night courses as well, with no one to check credentials. Manitoba has hastily introduced a five-day training program for uncertified care aides, and is even asking for volunteers.
Is that really who you want caring for your grandmother who needs help bathing, toileting and eating?
In July, in the midst of the pandemic, Ontario released a report on long-term care staffing, that was ordered in the wake of the inquiry into the murders of eight long-term care residents committed by former nurse Elizabeth Wettlaufer. Dr. Merrilee Fullerton, the provincial Minister of Long-Term Care, responded with vague promises to bolster staffing. But, in practice, what the province seems to be doing is hiring less-qualified workers such as residential facility attendants as a stop-gap measure instead of investing in a the contingent of PSWs and nurses.
The province has also vowed to create regulations guaranteeing that residents of long-term care facilities get at least four hours of hands-on care daily. (Now it’s roughly three hours.)
The Registered Nurses Association of Ontario, which has long been pushing for a “basic care guarantee” that includes that minimum four-hour threshold, praised the move initially but the RNAO was outraged when no money was allocated in the subsequent provincial budget. Bringing the standard up to safe levels in long-term care would cost about $1.8-billion a year in Ontario alone, according to an analysis by the Canadian Centre for Policy Alternatives.
This approach is par for the course. Governments have a tendency to make great announcements during periods of crisis, but then they tend to find excuses to not follow through.
The people living in long-term care facilities – mostly frail elders with conditions such as dementia, but also a significant minority of younger people with severe disabilities – are among the most vulnerable in society.
When a pandemic came along, some death was inevitable. The problem in Canada was the sheer magnitude of mortality. To date, Canada has recorded almost 12,000 COVID-19 deaths. During the first wave, more than 80 per cent occurred in congregate settings. During the second wave, that number slightly lowered, to almost 70 per cent, but only because more people are dying in the community.
Of the many failings that the pandemic has exposed in Canada’s health and social welfare systems, one of the most egregious is the lack of public data.
One of the only reasons we know the grim numbers about infections and deaths in care facilities is because of the tireless work of activists, a mish-mash of family caregivers, researchers, clinicians and more.
One of the most dedicated is Nora Loreto, a Quebec City journalist and podcaster. Back in spring, she was doing research for her program and could not find basic information such as the number of outbreaks and deaths in nursing homes, so she began compiling a list. That back-of-the-envelope exercise has morphed into the most detailed database in the country, listing outbreaks at 881 facilities (and counting) and almost 9,000 deaths. “It kind of grew into a monster,” Ms. Loreto says.
But her careful tracking of data has also revealed some notable trends. Not only is there a resurgence of outbreaks, but they are no longer concentrated primarily in major cities such as Montréal and Toronto. In the second wave, there are also more outbreaks in retirement homes, which are far less regulated than nursing homes.
What is much harder to track than the ravages of COVID-19 is the collateral damage, such as the devastating impact of isolation and inactivity.
Family members have largely been locked out of homes – or, at the very least, their interactions severely limited – since March. This has outraged family caregivers, who normally do a lot of hands-on caring for their loved ones and are often the only source of social interaction.
“My mom never had COVID, but her health deteriorated dramatically during the pandemic,” says Brenda Brophy of Victoria.
She walked out of Dot Finnerty’s room in mid-May and barely saw her again until the end of September when she took her 100-year-old mom home with her.
“Has it been hard, overwhelming and challenging to care for her? You bet it has. But I couldn’t bear to see her [locked] away like that anymore,” Ms. Brophy says.
Other family caregivers, most of whom can’t realistically bring their loved ones home, have been lobbying furiously to get back into homes, arguing that there is no evidence that family members would infect others if they have access to PPE and regular testing, just like staff.
They worry that if Draconian restrictions continue there will be a third wave of deaths owing to the mental and physical effects of loneliness.
Responding to families’ pleas for safe access would be good place to start reform of the system that desperately needs to start focusing on the quality of life of residents.
But will the horrors that befell the residential care system finally prompt long-overdue shift to patient- and family-centred care?
Ms. Brophy, like many caregivers, isn’t sure.
“Let’s just say that I don’t have confidence, but I do have hope.”