Long-term Care

Introduction

When eldercare makes headlines in Canada, it’s usually news of the worst kind.

On June 26, 2017, former nurse Elizabeth Wettlaufer was sentenced to life in prison for murdering eight vulnerable elders in care homes where she worked in southwestern Ontario. The inquiry that followed concluded that, had she not confessed, Wettlaufer would never have been caught.

Just after midnight on January 23, 2014, a blaze broke out in the kitchen of the Résidence du Havre nursing home in L’Isle-Verte, Quebec. Thanks to a lack of sprinklers, the absence of staff to help frail residents escape and the inept emergency response that followed, thirty-two residents suffered horrific deaths. No one was ever charged.

On January 20, 2019, 93-year-old Hélène Rowley Hotte, the mother of former Bloc Québécois leader Gilles Duceppe, left her seniors’ residence in response to a (false) fire alarm, without anyone on staff noticing. The emergency exit door locked behind her. That night the temperature in Montreal dipped to minus-21 degrees Celsius, and Hélène Rowley Hotte froze to death. A coroner’s inquest ruled the death was preventable but accidental. No one was charged.

Then came Covid-19.

As the novel coronavirus slithered into unprepared long-term-care homes, elders were no longer dying one at a time, or even by the dozens, but by the hundreds and thousands. Those deaths too were largely preventable. You can bet your lunch that no individual or organization will be held to account for the mass death of vulnerable seniors.

Eldercare in this country is so disorganized and so poorly regulated, the staffing so inadequate, the infrastructure so outdated, the accountability so non-existent and ageism so rampant, there seems to be no limit to what care homes can get away with.

Of course, there will be the obligatory inquiry. When a gross societal failure occurs, you can always count on Canadian politicians to embrace obfuscation and foot-dragging in lieu of action. In her 1,491-page report, Madam Justice Eileen Gillese, the Ontario Court of Appeal judge who presided over the Public Inquiry into the Safety and Security of Residents in the Long-Term Care Homes System (the Wettlaufer inquiry), said the reason a killer can run amok, undetected, is “systemic vulnerabilities.” She concluded that “assigning blame to individuals or organizations is counterproductive.”

That’s pretty much the conclusion of every coroner’s report, judicial inquiry and investigation that has ever been conducted into failings such as those cited above. And, remember, those cases are just the tip of the iceberg, the spectacular failures that generate media attention and political hand-wringing, not the everyday neglect that is deadly too. Yet the “systemic vulnerabilities” that are exposed time and time again never seem to get corrected. In Canadian health care, it seems, no screw-up, no matter how big or small, how sickening or deadly, is ever anyone’s fault. It’s always the fault of “the system.” 

So let’s fix the damn system.

Neglected No More isn’t a book about Covid-19, except peripherally. It’s a plea to stop dehumanizing elders, and to reimagine long-term care (LTC). It tells of families frustrated by their inability to access the care their loved ones want, the angst of dedicated workers who don’t have the time or resources to deliver the care elders want and need, and how a combination of history, changing demographics, political inertia and a health system with other priorities created a proverbial perfect storm that allowed a pathogen to ravage a vulnerable population.

It’s not a call for heads to roll that will never roll. It’s a stark exposé of what’s wrong and a rough blueprint for what we need to do to fix eldercare.

When I first wrote about AIDS in 1981, the acronym had yet to be coined; the strange new illness, which seemed to affect only gay men, was dubbed GRID—gay-related immune deficiency. In the four decades since, AIDS has become, arguably, the most deadly pandemic in human history. At least 36 million people have died of AIDS, and another 40 million are still living with HIV, the human immunodeficiency virus that causes AIDS. (Of course, nothing compares to the Black Death. The bubonic plague killed somewhere between 75 and 200 million people between 1346 and 1353. But that was long before the advent of medicine or public health measures such as sanitation and clean water.)

AIDS has not only described the arc of my career in journalism, it has spawned in me a long-standing interest in pathogens more broadly: the viruses, bacteria, fungi, parasites, worms and prions that have been the scourge of humanity since the dawn of time. I have written about all manner of infectious micro-organisms, from the obscurely rare to those that casually kill millions a year, everything from sleeping sickness to tuberculosis, chicken pox to Ebola, polio to influenza.

Outbreaks rarely generate much media attention. The exception was Severe Acute Respiratory Syndrome (SARS). In 2003, SARS-CoV killed forty-four Canadians, devastated the economy and exposed gaping holes in our public health infrastructure. It was a dress rehearsal for a real pandemic.

The formal name for the pandemic virus that causes Covid-19 is SARS-CoV-2. When it arrived in our midst, someone (I wish I could remember who) said, “You’ve been training for this moment your whole life.” That’s true. For me, infectious diseases are fascinating not because of their biology, but because they almost always have wide-ranging social, economic and political implications.

We are only beginning to get a sense of the earth-shattering fallout from Covid-19. In Canada, the pandemic has, among other things, exposed the fault lines in our institutions—political, public health, judicial and more. But no sector has been more brutally unmasked than eldercare, the hodgepodge of long-term-care homes, home care and affordable housing for seniors that lurks on the margins of health and welfare systems. We have long deluded ourselves into thinking our elders were well cared for. Now the norm has been shown to be horribly inadequate. We have been forced to confront the fact that the old way of doing things—dispatching our elders to live in holding-on-by-a-shoestring nursing homes—is not working.

AIDS forced journalists to write about all manner of issues that were largely taboo until then: homophobia, intravenous drug use, sex work, institutionalized misogyny and more. It made us confront uncomfortable socio-economic realities such as how poverty, marginalization and disempowerment are pathogens’ best friends. Covid-19 is reminding us that we need to relearn many of those lessons.

It is hard to imagine a population that has been more profoundly neglected for an extended period than elders. The responses to the sickening incidents cited at the outset of this introduction exposed multiple “systemic vulnerabilities”—the treatment of elders as disposable, understaffing, poor regulation and a total absence of accountability—that were never corrected. If anything, they grew worse. That set the stage for what happened in care facilities during Covid-19: thousands upon thousands of deaths, most of which were preventable.

What is perhaps most shocking is how little was done to raise the ramparts around nursing homes. Anyone with even a passing knowledge of infectious diseases would know that frail seniors living in congregate settings are sitting ducks for pathogens, especially respiratory viruses. As soon as the word “pandemic” was uttered, alarm bells should have gone off and protective measures put in place.

That elders were at high risk was no secret. By February 2020, there was extensive coverage describing how coronavirus was hitting seniors particularly hard in China and in Europe, and warning that this phenomenon could soon hit North America. Among people over the age of 80 who had contracted coronavirus, the death rate was 22 percent; in those aged 70 to 80, it was 8 percent.

The headline on a column I wrote in the March 8 edition of the Globe and Mail—before a single nursing home death had occurred—read: SENIOR CARE FACILITIES ARE ESPECIALLY VULNERABLE TO COVID-19 OUTBREAKS. Not long after that, I wrote another column saying “if you can get your relatives out of seniors’ homes, try to do it as fast as you can.” That commentary triggered many angry responses, but, in retrospect, my only regret is not having said it sooner.

It would take almost two months before politicians officially acknowledged the severity of the long-term-care crisis, by calling in the troops, literally. Canadian Forces health specialists were deployed to the hardest-hit homes in late April 2020. By then, thousands had already died. Quebec, the hardest-hit province by far, created “SWAT teams” to dispatch to care homes in October 2020, but did so only after a second round of deaths in institutional care was well under way.

The way elders died—almost always alone, their family caregivers locked out, without palliative care, and often with little care at all—was the greatest horror of all. Nihilism reared its head in our public policy response, an underlying ageist “they’re going to die anyhow” attitude. The proponents of “herd immunity”—let the coronavirus run rampant and if vulnerable elders die en masse, too bad, that’s the price of getting the economy running at full steam—openly reflected this crude philosophy.

There are those who will be looking for villains—politicians, care home operators, workers who walked off the job. But the real villain in this tragedy is society’s profound and long-standing neglect of elders. A reckoning is in order.