Eldercare

I’m not sure when my aversion to the telephone started. Perhaps it was with Auntie Gwenyth’s calls. Sometimes she would start the conversation with “Have you spoken to your father recently?” Those words became a signal that she had something worrisome to tell me—something that would niggle at the back of my mind. That’s what happened on a night in late October 2007, just as I was getting ready to walk the dogs. As I slipped into my jacket and rooted around in the hall closet for my gloves, the phone rang. I sighed. I could let it go to voice mail, but it might be about choir practice. Reluctantly, I picked it up. “Hello, dear,” said a perky, low-pitched voice. At eighty-two, my dad’s younger sister had a sharp wit and strong opinions on topics that ranged from fashion to politics. “Have you talked to your dad and Joan lately? I hear you’re going up to visit them.” “Yes. We’re going to spend Christmas with Bill’s family this year, so I’m planning a pre-Christmas visit.” “Oh, that’s nice. But have you talked to them about the details?” “Uh-huh. Several times, in fact.” “Well, that’s odd. Your father didn’t seem to know anything about it. You’d better call him and go over it again.” It certainly was odd. In the past few years I had made an annual late autumn trip from my home in New Brunswick to the Ottawa River Valley to visit my father and Joan, my stepmother. We had talked about my plans for a visit in November. Both Dad and Joan sounded excited that I was coming and were sorry Bill couldn’t take the time off work. It was a little over a year after Bill and I became a couple. They were delighted that, in my fifties, I had finally met a man who had son-in-law potential. The evening after my conversation with Auntie Gwenyth, I got a call from Auntie Marjorie, the youngest in Dad’s family, who lives near Montréal. “Hello, dear. I hear you’re coming for a visit. Would you like to come over after your dad picks you up at the airport? What time does your flight get in?” I explained that I’d be taking the overnight bus to Lachute and would pick up a rental car there. “That’s funny. Your dad and Joan both told me you’d be flying and they’d have to pick you up at the airport.” She sounded puzzled. Then Dad called. “When is it you’re coming?” he said. “Are you flying?” “No, Dad. I thought we talked about this.” “So, we don’t need to go to the airport to pick you up?” I struggled to quell my impatience as I went over the details again. “Dad, why don’t you write this down?” “I did, but I don’t know what I did with the note. It’s on a slip of yellow paper somewhere.” I could hear him rustling papers and breathing unevenly into the phone. A mental image of their kitchen table, perpetually cluttered with junk mail, phone and electricity bills, and grocery lists, took form.

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.

Prologue

I write this in the middle of a pandemic.

There is much that we don’t know. Scientists are racing to create a vaccine. Immunity from a second round of COVID-19 is unclear. The virus’s timeline in our lives remains a mystery, although public health officials say it could last a few years.

Here is what we do know.

When COVID-19 landed in North America, we had already witnessed its death march through seniors’ homes in Italy, Spain and France, killing thousands — retired teachers, accountants, electricians and bakers. The parents and grandparents of Europe.

We knew that elders, winners in the lottery of long life, were vulnerable.

When the virus arrived, in cities large and small, nursing-home deaths surged and soon, New York, Chicago and Los Angeles became COVID-19 hotbeds. In Ontario and Quebec, infections decimated long-term care, but not before a young geriatrician tweeted a warning: seniors’ homes will blow up like a tinderbox.

Dr. Samir Sinha was right. So were countless others, from AARP, the influential advocacy organization for older adults, to the Registered Nurses’ Association of Ontario, all telling governments to focus on COVID-19 in nursing and retirement homes. Give all staff masks, test everyone, not just those with symptoms because, as we soon learned, the telltale signs in older people were as innocuous as an upset stomach or nothing at all. The virus used stealth.

Those were the infection control actions, but the bigger crisis, the spark to the tinder that Dr. Sinha cited on Twitter, was the system that controls seniors’ homes. For decades, long-term care has operated on a tight budget, draining the life pleasure of the people who reside within while devaluing the work of staff, forcing many to work in two or three locations just to make a living wage. This is how a virus spreads from one home to the next.

As I write this in June 2020, we still don’t know how many elders will die.

We do know that the coronavirus-related deaths of older people are forcing the industry and politicians to confront reality, even though it was there to see all along. Going into the pandemic, governments mostly viewed nursing homes as a second-tier system for residents whose frailties were similar to those in acute care hospitals.

It remains to be seen if these flaws laid bare will lead to improvements, but the suffering will not soon be forgotten. Families were banned from visiting, a policy meant to keep residents safe, even though workers unintentionally brought COVID-19 inside, infecting the people in their care. Without proper protections, the virus spread. As weeks passed, and staff grew sick or terrified, families realized that parents and grandparents were dying, alone.

There will be a generation of adult children who live with the trauma of knowing their mother or father spent the final moments of life with no one to hold a hand or speak quiet words of love. As a journalist with the Toronto Star newspaper, I have spent the pandemic writing about seniors’ homes, speaking to families that were emotionally destroyed. People who had the means