An alternative to finger-pointing on COVID-19 and long term care

On COVID-19 and the severe impact it’s had on long term care homes especially in Ontario, it’s time to try a different approach. After pointing fingers to such an extent that we no longer have digits to point anywhere, we should give listening, empathy and compassion a try. 

The private firm Revera, which owns and operates more than 500 properties across North America and the UK, does not at first blush feel like it needs our empathy. There are many people who now realize “profit” and “long term care” do not belong in the same sentence. Or even paragraph. And it’s a very compelling argument, although maybe it’s shareholders that don’t belong in this business. Perhaps a discussion for another day. 

A recent report Revera commissioned from volunteer experts sheds some light on the difficulties the company encountered dealing with the COVID-19 pandemic in its long term care and retirement homes — difficulties that were not all of its making. The report deserves a fair airing. 

There is a lot of blame to go around for what happened to seniors in congregate settings this year. The long term care sector has long been neglected by just about everyone. Too many buildings are old, too many residents live in cramped conditions, sharing bathrooms, and having to make do with less hands-on care than what they’re entitled to because the sector suffers from a long-standing shortage of staff. 

Personal support workers, or PSWs, are in short supply and have been for a long time. And not without reason. It’s not a very glamorous job — washing people, dressing them, making their beds, keeping them company, listening to their issues, cajoling them into taking their medicine and reminding more than a few of them — again, that it’s not appropriate to yell. 

The pay is pretty awful, too. 

But now there’s a pandemic and a quarter of PSWs aren’t at work. Some have been told to isolate because they may have been at risk of catching COVID-19. Others got it and took time off to recover. Others... we just don’t know. They’re not at work. Maybe they’re scared of catching the bug at work and bringing it into their home and making their own family members sick. Who could blame them. 

It’s been several long months  of rushing this way and that, fighting a war against an invisible enemy and losing badly. Those PSWs who have been at work since the spring are tired. Family members of the residents, even though they’re essential caregivers, have been locked out for a long period. Doctors aren’t showing up either. Too many residents are sick. Every second or third day one of them dies alone, scared, fighting to breathe and failing. 

We don’t know the names of those PSWs, but we can be pretty sure most of them are women. Often from marginalized groups — recent immigrants, women of colour. People who don’t earn a lot of money doing a job that most people wouldn’t want to do at twice the salary. They’re at work despite the risk, the pain, the worry and the crushing weight of expectations placed on their shoulders. 

An overwhelming majority of the residents they look after have some form of cognitive impairment. Some of them don’t understand what’s happening. Others wander around despite being asked to stay in their room. They forget their mask, have trouble washing their hands without assistance. They require a lot of hands-on care, which contributes to spreading the virus. 

The pandemic has wreaked havoc in long term care homes in Ontario and elsewhere in the country. Of all the COVID-related deaths in Canada, roughly 80 percent occurred in LTCs. That’s a lot more than in other countries. People are angry, and understandably worried about their loved ones living isolated from their family in crowded homes with a crying need for more staff that’ll never come. They see their roommates dying. They wonder if they’ll be next. 

PSWs are used to people dying. In that business, death is a common occurrence. It doesn’t scare them, but it never leaves them indifferent either. And now... now they hold a phone to the ear of dying residents so families can say goodbye. It breaks their heart. 

One PSW wrote a letter to her employer, Revera, that was reproduced in the report mentioned above. Sometimes, she says, she will remove her face mask at the very end of a resident’s life “so that they could see my smile when I saw the fear in their eyes to give them a sense of peace, knowing the risk, but feeling it the right thing to do for them in the moment.” She knows it’s dangerous. She knows it goes against infection prevention and control protocols. She does it anyway. Because she’s a human being with emotions even though she ends her letter with “we are broken and we are sad. I do not feel.” 

I cried reading that.  

“With most health system resources focused on protecting hospital capacity,” the report says, “Revera, along with most long term care homes, was not prioritized for testing early in the pandemic, and received inconsistent guidance and support from the health ministries, public health units and local health authorities.” 

Operators received different and often conflicting guidelines about when staff ought to isolate, about infection prevention and control protocols, about cohorting of residents. They were not abandoned, quite. It’s just that they were nobody’s priority, despite the fact that elderly frail residents with serious and often complex medical issues are the most at risk of dying from this virus. 

Without wishing to point fingers, I want to focus on the crucial lessons we learned early on in the pandemic that, if acted upon earlier, would have saved hundreds of lives. 

1. People are contagious before showing symptoms and even without experiencing any symptoms at all; 
2. Many part-time PSWs work at different homes in order to patch together a full-time living; and 
3. PSWs often live in communities where infection rates are higher than average. 

Together, these elements meant that PSWs, without meaning to, brought COVID-19 to LTC residents. And once it was in those homes, especially those that are more crowded and where residents share bedrooms and bathrooms, it spread uncontrollably. 

The Revera report notes that as of March 23 it stopped its part-time PSWs from working in different homes, a step the Ontario government did not take until the middle of April, as was also noted by the province’s auditor-general in a special November report on pandemic management. 

Revera’s data indicate that “97 percent of residents’ infectons — or 844 of its 873 cases in long term care (...) could be traced back to outbreaks that occurred during the week of April 13 or earlier.”  

If the province hadn’t waited weeks to restrict PSWs to one home, how many lives might have been saved? 

We’ve all heard the same argument, over and over again. There is a severe staff shortage in LTCs, a problem that predates the pandemic but that was made worse by it, as many employees could not — or in some cases would not — go to work. And let me be the first one to refuse to blame anyone who, afraid for a family member with chronic health problems or just afraid for their own safety, did not want to be exposed to the virus. 

I mean, most doctors refused to visit long term care homes. They moved to virtual consults, because they could. PSWs can’t work remotely. 

The sudden disappearance of nearly one-quarter of the workforce made life hell for the PSWs who tried to hold everything together and for the residents in their care. 

Many homes called on staffing agencies to send help. However those temporary workers had to be trained — not just in the regular procedures but also in infection prevention and control such as how to put on and remove PPE and disinfect surfaces. This training had to be done by regular staff who were already badly stretched. 

Staff also had to relocate residents who needed to be isolated or quarantined and holding iPads for them to connect remotely with family members or their doctor. All while trying to keep families informed. 

Plus all the unpredictable nonsense that often accompanies crises, such as this gem: “One Revera home received 21 handwritten pages of results faxed without names attached; the report listed only case identification numbers, followed by a positive or negative sign. Staff had no choice but to spend precious hours sorting through the reports to figure out which results belonged to which resident.”

In the first wave, as everyone’s energy was devoted to maintaining hospital capacity, LTCs were discouraged from sending sick residents to the hospital, “especially if they were frail, suffered from dementia or were deemed unlikely to survive. This left many residents to battle the disease in locked-down homes that were never designed to provide acute care, which meant going without the medications, oxygen and ventilators that might have eased their suffering or saved their lives.” 

If they were deemed unlikely to survive.

There has been a lot of criticism of LTCs in Ontario and elsewhere. The pandemic has exposed a crisis that was many long years in the making — the slow neglect of our seniors. There’s been enough finger-pointing already, I don’t really want to add to that, except to say that we all need to do better. 

As it turns out, our early focus on prioritizing hospital capacity at all costs may have been — not a mistake, really, but maybe it blinded us to critical vulnerabilities in LTCs and what we could do to mitigate the risk of seeing so many seniors die a horrible death that might have been prevented if we’d continued to allow essential family caregivers to come in (with proper infection control training) and acted earlier on part-time PSWs working in multiple homes. 

Hindsight is 20/20. And there’s no telling how much worse off we’d be if we’d allowed hospitals to collapse under the pressure, as happened elsewhere in the world. My only hope is that we are learning the lessons of COVID-19, because they were acquired at a heart-wrenchingly heavy price.