On maps of old, cartographers would mark unknown regions with the Latin phrase hic sunt dracones, here be dragons. Those regions were feared, and myths were created both to warn of unknown dangers and to represent those fears with belief systems of the day—sea monsters, dragons and the like. So it is today in Canada with long-term care homes: a realm just beyond what we know in our daily lives, feared as a final destination, with avoidance, myth and comforting denial domin-
ating our thoughts and narratives about the places our loved ones go in the final phase
of their lives.
In spring of 2020 I chaired a working group that prepared the Royal Society of Canada’s “Restoring Trust: COVID-19 and the Future of Long-Term Care,” published in June 2020. The report documented two crises in long-term care.
The first was a crisis of high mortality. At the time, of all countries in the world, Canada had the highest percentage of its COVID deaths coming from long-term care: 80 per cent. We continued to have a shameful record, with rates dropping in the second and third waves only to about 70 per cent. This, in one of the richest countries in the world, considered by many people to have an exceptionally desirable standard of living. How could this happen? In truth, that high standard is reserved for the young, the well off, the highly educated, those still working, and maybe that small proportion of the elderly with wealth or exceptional social circumstances. The latter, however, are not typical of the older adults living in most of our long-term care homes, or nursing homes as they are often called. There, residents are very old, frail, cognitively impaired, beset by multiple chronic conditions, many with untreated depression and other illnesses, on many drugs, with sensory impairments such as diminishing hearing and sight. Residents who were in the formal workforce collect CPP; some have a work pension, some only OAS. Most are female and poor.
Of all countries in the world, Canada had the highest percentage of its COVID deaths in long-term care.
The second crisis was the lack of humane care. This concerned how older adults lived their last days and how they died. During the pandemic, all residents in long-term care suffered. Those with COVID-19 suffered the most. Death from COVID-19 is a hard, hard death, even in a fully resourced ICU in the best hospital in the world. You cannot get your breath as your lungs fill; you are frightened; you are feverish; and as the virus breaks the body down, all systems rapidly fail—often your blood won’t even clot. I saw those kinds of deaths many years ago in the ICU from other virulent but isolated causes. When I read the first reports out of China of the way COVID patients were dying in ICUs, it took my breath away; old memories flashed back and tears stung my eyes. Then it happened in Canada. In our most-stricken long-term care homes, staff walked away, patients died of starvation and dehydration, in their own excrement, alone—in Canada! But no aide or nurse or manager leaves their post unless the conditions are beyond anything you or I can imagine. One doesn’t call in the army, as Ontario and Quebec did, unless the situation is dire. Across Canada, homes quickly became overwhelmed—bad and intolerable conditions descended on unprepared and ill-equipped settings.
Whether or not they had COVID, older adults were isolated from family and friends and confined to their rooms, immobile, eating alone, receiving infrequent and limited care because there weren’t enough staff. Even when they received care, they were tended to by seeming strangers in full personal protective equipment (PPE). Old people have sensory losses; they don’t always hear or see as well as they used to. In Canadian long-term care homes at least 70 per cent of residents have a dementia, and at least 90 per cent some degree of cognitive impairment. This means they need familiarity and routine, special attention to hearing and vision losses—not people who look like aliens garbed in PPE, making muffled sounds behind masks, their facial expressions unknown. For people with advancing dementia, it’s worse. You get confused (“Why are you punishing me?” “Why won’t my family visit?” “Where am I?”). You get anxious, and the thing you need most is recognizable human connection. It’s what keeps you alive. When one isolates an older adult who is frail and has dementia, predictable things happen: rapid loss of muscle mass and mobility, apathy, fear, agitation, loss of appetite… decline. In the fall of 2020 the Washington Post published an article based on Centers for Disease Control and Prevention data estimating that in a six-month period in the US 13,200 deaths among long-term-care residents with dementia had occurred due to COVID-19 conditions, prime among them social isolation. The death certificates said dementia, but these people died of loneliness.
The social isolation and confinement lasted past the first and second waves. Only well into 2021 did we see the widespread lifting of restrictions. We could have done that much sooner with proper resources.
All of these things happened in Alberta and across Canada. Some provinces were hit harder and some had more difficulties in certain areas, but none escaped. Importantly, the root causes were the same in every jurisdiction—all that varied was degree. Some differences are worth noting. COVID-19 was much more devastating for residents in Ontario’s and Quebec’s private, for-profit sector, for example, than in Alberta’s. Alberta manages the private for-profit sector rigorously, with careful regulation, comparable funding and thorough oversight. Some differences between for-profit and not-for-profit were apparent in Alberta (e.g., staff in private facilities are paid less, hence the provincial government gave them a temporary $2/hr wage top-up), but the overall quality of care here did not differ significantly across ownership models.
Two colleagues and I outlined steps to deal with the immediate crisis in a Globe and Mail op-ed in June 2020. These included all long-term care homes having a plan for responding to outbreaks. We recommended regular, unscheduled, in-person inspections by a public health authority (not by an accreditation body). Long-term care homes must be equipped for infection control with adequate PPE and staff education in infection prevention. During an outbreak, long-term care homes must have means to connect residents with family and friends. Familiar voices, support and comfort are essential and these people also ensure accountability. All long-term cares homes must be able to properly isolate individuals with communicable illnesses. Long-term care workers must be given full-time work. Minimum wage is unacceptable given the importance of this work, the expertise required and the personal risks for workers. And jurisdictions must have a “one-site work policy.” Employment in two or more settings contributed to COVID-19 outbreaks.
These recommendations weren’t all implemented; second and third waves occurred and high mortality and care failures continued. But long-term care was prioritized immediately upon availability of vaccines. Alberta had fully vaccinated nearly all long-term care residents and most facility staff by late April 2021. This was a singularly urgent action. PPE was also made available to all Alberta health workers as of February 2021, although this came one year after the pandemic began. Education about infection control and PPE is ongoing. And, as of midsummer 2021, no more than two residents may occupy a room in an Alberta long-term care home.
The crises of high mortality and lack of humane care may have seemed sudden, even unexpected. But this novel coronavirus—to which no one had immunity, and which older adults were especially at risk of acquiring because of their aging immune systems—entered a long-term care system whose foundations were already severely weakened. How do we fix those long-standing deficiencies that enabled COVID-19 to hit long-term care so hard?
The 80 or so reports produced in Canada over the last 50 years about serious concerns in long-term care provide a tragic profile of neglect. This neglect is driven by some of the most difficult “isms” there are to change—ageism and sexism—all wrapped up with the profound devaluing of caregiving, stigma about dementia, an aversion to and fear of thinking of ourselves as old. We fear being cognitively impaired, dependent or unable to take care of ourselves, the loss of liberties. And, of course, we have a deep-seated cultural unwillingness to talk about death.
We have also been able to ignore the horrific conditions that often prompted those reports because they are treated as independent, unrelated problems. The nearly three dozen old people who burned to death for want of sprinklers… one of Canada’s most prolific mass-murderers doing her work in long-term care… a single, elderly woman dying from scalding in a bathtub in a long-term care home… horrific sexual assaults in long-term care facilities… all real events in four different Canadian provinces. We think of them as terrible one-time tragedies.
They are not; they all happened because the system in which we care for older people is flawed. We have never really shed the vestiges of its origins. Nursing homes are a product of 17th century Elizabethan almshouses and poorhouses—wretched places staffed by wretched people. Elizabethan poor laws created classes of the deserving and the undeserving poor. Those same classes were echoed in nursing homes of the 20th century—classes of the deserving and the undeserving old (often poor, destitute, female, ill, alone or mentally ill).
Today, long-term care homes sit uncomfortably between the Canada Health Act and 13 different provincial/territorial jurisdictions, legislations, regulations and arrangements, a sort of “no woman’s land.” This is a realm rife with jurisdictional squabbling that only serves to deflect our attention from solutions. These homes don’t exist in a vacuum of ignorance—of insufficient knowledge about how to improve care. No, they sit in a vacuum of inaction and neglect.
What long-standing conditions in long-term care have we ignored?
First, we are failing to keep up with the changing profile of residents enter-
ing long-term care. Residents are now older, more dependent, most of them with dementia, and much further along in the course of their various conditions because of the success of “aging in place” policies. These are a good thing, but only if we adapt our long-term care sector to higher care demands and improve staffing.
This change in the profile of long-term care residents has been accompanied by our delusions that their care—some of the most complex and demanding in healthcare or social services—can be adequately provided by a workforce of whom roughly 90 per cent are unregulated, usually with a high school education and a certificate that requires less than a year of training. We also kid ourselves into thinking this work can be done without enough registered nurses and educators to provide support to this unregulated workforce and without raising minimum hours of care accordingly over time.
Care is poorly integrated across the entire spectrum, from hospitals to primary and community care. We have a sometimes incoherent regulatory system that in some instances overregulates around risk and sometimes underregulates, and where accreditation and inspection are inconsistently applied across the country. Alberta’s regulatory system, while imperfect, is more coherent than many.
Our society utterly fails to put the older adult’s voice front and centre, to hear it, to heed it—whether that voice is from people with dementia or not. Similarly, families are often poorly integrated into long-term care.
We also take a “head in the sand” approach to long-standing population trends. The aging of the population should surprise no policymaker or citizen. It has been baked into our demographics for a century, accelerating as living conditions have improved, fertility rates have dropped and medical science enables us to live longer. We also ignore other population trends. New Brunswick’s population, for example, was the youngest in the country in the 1960s, and 50 years later it is the oldest—a stark illustration of how a sagging economy and out-migration can accelerate a province’s aging. Alberta may be young now, but we too are unprepared for an aging population, and inaction will make us even less prepared for the years ahead.
Our long-term care systems require serious and rapid attention to long-standing inadequacies. The Alberta government’s Facility Based Continuing Care (FBCC) review, released in May 2021, noted that many issues existed in long-term care prior to the arrival of COVID-19 and “were amplified by the pandemic itself.” Its 42 recommendations include an increased focus on quality of life and person-centred care, particularly culturally appropriate services and specialized services for people living with dementia; improving the coordination of long-term care with other health and social services; increased hours of care from nurses, healthcare aides and therapy staff; better wages and benefits, more full-time employment, and mental health and wellness supports for staff; improved monitoring and inspections; replacement of aged facilities; elimination of shared rooms; and funding for the development of new types of long-term care spaces.
We must make workforce improvements immediately. This is the single most important factor to creating a sturdier system, better able to withstand pandemics and other events. It depends on multiple factors, as estimating staffing needs requires us to understand the residents, the workforce caring for them and the local care environment. Alberta is better positioned than most provinces to bolster its workforce. We have good data on residents’ characteristics and their care quality by virtue of having implemented routine data collection every three months in long-term care homes. Not every province has this.
However we have almost no data on the long-term care workforce throughout Canada. It’s nearly impossible to even count the unregulated workforce—the care aides and personal support workers. Few registries are in place, and where they are, they are ineffective. In late 2020 Alberta moved to be the first province to regulate care aides. This is a significant step. The province’s FBCC review did recommend increasing minimum hours of care, but it stopped short of stating the proportion of care that must be provided by registered nurses and allied professions. The evidence is unequivocal that not just minimum hours of care but also the skill mix determines adequate staffing.
We lack data on the characteristics of the workforce, particularly the care aides, e.g., ethnicity, languages spoken, caregiving burden outside of paid work, and workplace stress (burnout, physical and mental health, engagement, empowerment, job satisfaction, intention to leave etc.). Such information would be essential in normal times; it is urgently needed in the aftermath of COVID-19’s toll on the long-term care workforce. In Alberta a partnership of government, regions, long-term care facilities and researchers is monitoring a representative sample (about 20 per cent) of urban long-term care homes, but this effort is not comprehensive.
Attitudes about age, women and race enable us to think it’s acceptable to provide poor care to residents and insufficient education and support to care workers.
My colleague at York University Dr. Pat Armstrong frequently says, “The conditions of work are the conditions of care.” She’s correct. The care environment must include strong leadership at all levels, including the front lines; cohesive teamwork; a supportive culture; adequate resources; feedback on care unit performance; opportunity for ongoing learning; good communication; inclusivity; meaningful integration of ancillary workers on a unit (dietary, housekeeping, custodial); a focus on relationships and relational care; and, importantly, the prioritization of resident quality of life and autonomy. When these conditions aren’t monitored, it is impossible to know whether they’re improving, staying the same or declining. We need to assess them and act on those assessments. Monitoring must be widespread and embedded in routine systems, just as payroll is embedded. If available, relevant and acted upon, data are a powerful tool for change.
Funding goes hand in hand with political will and the will of the people. Our governments respond to what citizens demand, sometimes slowly, but the ballot box speaks loudly. If politicians haven’t responded, this is in part because we haven’t demanded enough. If we haven’t demanded enough, this is surely because we haven’t understood what long-term care conditions are truly like or what care our grandparents, parents, spouses, siblings, long-time companions—and, soon enough, ourselves—need. And maybe we’ve let the rhetoric about the “grey tsunami” sway us: the old people “bankrupting the economy”; the “boomers who took it all and left nothing.” This is utter nonsense, but these ideas are persuasive. They’re persuasive because we’re a profoundly ageist society. We do not value older adults; we value them less when they’re not “unit-producing individuals,” and still less when they’re cognitively impaired or no longer vote and have no voice because advanced dementia has taken it.
Neither does our society value the work of caregiving, work often done by women—and in the case of long-term care, almost entirely by women, over half of whom are women of colour. Our attitudes about age, women, race and caregiving enable us to think it’s acceptable to provide poor care to residents and insufficient education and support to workers to do this complex and demanding work, this honourable work. We think older adults aren’t entitled to live the last stage of their lives with dignity, free of fear, loneliness and pain. What happened in long-term care during COVID speaks louder than any protestations we may raise to say it isn’t so.
It will take more than just informed voters, better resources, more staff or good data to improve long-term care. We need committed policymakers, educators, health professionals, lawyers, civil servants and everyday people who care. We must commit to support our fellow citizens who require long-term care so that they can live and die with dignity, with purpose and without fear or suffering—and even with moments of joy.
If all of the recommendations in the Facility Based Continuing Care review are prioritized and action is taken, if Albertans of all ages step up and demand change, we could come out of this pandemic the better for it. But this is not a given. Without fundamental changes and tenacious effort, long-term care will continue to be inadequate at the best of times—and woefully unprepared for the inevitable next pandemic.
Carole Estabrooks is a professor of nursing at the U of A and scientific director of the Translating Research in Elder Care program of applied research.