From Cruddiness to Catastrophe: COVID-19 and Long-term Care in Ontario

ABSTRACT

Over 80% of Canadian COVID-19 first wave deaths occurred in long-term care homes. Focussing on Ontario, I trace the antecedents of the COVID-19 crisis in long-term care and document experiences of frontline staff and family members of residents during the pandemic. Following Povinelli, I argue that the marginalization of both residents and workers in Ontario’s long-term care system over two decades has eroded possibilities for recognition of their personhood. I also question broader societal attitudes toward aging, disability and death that make possible the abandonment of the frail elderly.

KEYWORDS:

• COVID-19
• long-term care
• neoliberalism
• Canada

Over 80% of COVID-19 deaths in Canada during the first wave of the pandemic in 2020 occurred in long-term care homes (Estabrooks et al. 2020: 5). Among the 16 OECD countries, Canada bore the dubious distinction of having the highest proportion of COVID-19 deaths in long-term care facilities (Stall et al. 2021: Figure 2). The provinces of Ontario and Québec experienced particularly high rates of infections and mortality in long-term care. As residents and staff contracted COVID-19, conditions in many residences deteriorated. Severe understaffing led to the deployment of the Canadian Forces to provide care for residents in 47 facilities in Québec, and seven in Ontario. In addition, in mid-March 2020, both provinces issued directives locking down all long-term care homes to visitors for the duration of the pandemic, leaving residents isolated, lonely, and without access to family caregivers who had been providing high levels of assistance in daily living for a significant number of residents (Lowrie 2020; Ontario 2020a; Picard 2021; Stevenson and Shingler 2020; Tasker 2020).

Focusing on Ontario, I provide ethnographic insight into the crisis in long-term care during the first wave of COVID-19. To go beyond the dire statistics, and understand the impact of COVID-19 on long-term care from the perspective of individuals engaged with the system at the grassroots level, I conducted interviews by Zoom and telephone in summer 2020 with 94 participants from all over Ontario. Although I was unable to interview long-term care residents themselves, owing to public health regulations, I interviewed their family members as well as nurses, personal support workers, recreation therapists and long-term care administrators.

The ethnographic materials presented here relate to larger arguments about the exclusion and depersonalization of the elderly, not only in Ontario, but in other Canadian provinces, the United States and Europe. Writing of the “sudden and mass fatality of the institutionalized elderly” that characterized the first wave of COVID-19 in much of Europe and North America, Lawrence Cohen argues that institutional unpreparedness for the pandemic led to a logic, performance and imagination of triage that called into question the “legitimacy of the old body as the object of proper medical care” (Cohen 2020: 542). As an instance of such triage, he points to Québec, “where under the sign of crisis, coronavirus-infected patients who were designated as ‘frail elderly’ were moved out of hospitals into nursing homes, to make respirators and beds available in hospitals for the ‘appropriately’ sick, creating conditions for amplified viral spread” and mass abandonment (Cohen 2020: 544). Elsewhere, in California and the United Kingdom, some politicians advocated “culling” the dependent elderly as a “natural” outcome of allowing the pandemic to run its course, which would have economic benefits by reducing pressure on public services (Cohen 2020: 548–9). As in the cases summarized by Cohen, the conditions described by my respondents and detailed in the media and military reports from Ontario could be likened to those in states of exception created by Mbembe’s (2003) necropolitical regimes, where inhabitants are reduced to what Agamben (1998) calls “bare life”, a biological entity whose existence has been dehumanized and which sovereign authority can eliminate.

Comparisons could also fruitfully be drawn between long-term care in Ontario and what Povinelli calls the “cruddy” conditions of abandonment generated by late liberalism’s economic policies. For Povinelli, under late liberalism or neoliberalism, market logic prevails and becomes entwined with the state, so that social welfare programs are evaluated in terms of their market value rather than their capacity to promote life (Povinelli 2011: 22). This description aptly characterizes the partnership between government and corporate sector in Ontario’s long-term care system where, as detailed below, de-regulation, privatization and the use of tax dollars to purchase public service provision from the corporate sector have been guiding principles of policy since the 1990s (Armstrong and Armstrong 2019: 18–19).

Povinelli (2011: 4) describes cruddiness as a “state of neither great crisis nor final redemption” where “there is nothing spectacular to report” but “life-as-suffering will drift across a series of quasi-events into a form of death than can be certified as due to the vagary of ‘natural causes.’” As I show in the sections that follow, such “ordinary, chronic and cruddy” (Povinelli 2011: 3) forms of suffering existed in Ontario’s long-term care system prior to COVID-19, due to inadequate resources and insufficient staffing. During the pandemic, these cruddy conditions catapulted into the kind of catastrophic crises “that seem to necessitate ethical reflection and political and civic engagement” (Povinelli 2011:13–14).

Alluding to Mbembe and Agamben, Cohen acknowledges that the condition of the institutionalized elderly during the pandemic could be understood as one of bare life “within a prior and ongoing condition of exception and erasure” because the elderly have chronically lacked social and political recognition. Yet he also suggests a more nuanced perspective, arguing that there is “a long line of work in medical anthropology that troubles easy binaries of intergenerational abandonment versus care” and that “relations and structures of care, abandonment, and harm are not easily distilled from one another” (Cohen 2020: 546–547). Similarly, Annette Leibing, also writing about COVID-19 in Québec, calls for a critical perspective that would recognize long-term care homes as “spaces of ‘bare life’ … comparable to a ‘state of exception,’” while avoiding simplistic polarizations of “good and bad, in which victim and oppressor … are unquestioned categories” (Leibing 2020: 222). She advocates an ethnographic approach that would simultaneously reveal the devastation wrought by COVID-19 on the elderly and deficiencies in the overall system of care in which they and their caregivers are marginalized. Such an “ideal ethnography” of the crisis would also investigate “how, historically, such a neglectful system could come into existence and survive” (Leibing 2020: 226). In this article, I take up the challenge of presenting a nuanced, historically grounded ethnographic perspective, which integrates the voices of multiple actors to provide a three-dimensional picture of long-term care in Ontario before and during the first wave of COVID-19.

I start by documenting the first wave COVID-19 long-term care crisis in Ontario and its extension into the second wave in late 2020 and 2021. A section outlining the structure and funding of long-term care in Ontario follows, with discussion of the ways in which neoliberal policies and for-profit ownership of over half of the long-term care facilities in the province shaped the trajectory of COVID-19 in this sector. Against this backdrop, I then present five deeply contextualized narratives of experience during the crisis. In invoking the concept of “crisis”, I am mindful of the ways in which uncritical use of this term can lead to a view of calamities as the outcome of errors or accidents rather than focusing on the normative conditions that give rise to catastrophic adversity (Barrios 2017, see also Berlant 2007). In the following analysis, I show that although the rhetoric of crisis was used to describe COVID-19’s impact on residents of long-term care in Ontario, this was not an aberrant rupture, but the product of a long-standing, routinized pattern of quotidian policies and practices.

The crisis

In March 2020, citizens of Ontario were appalled by military reports from several long-term care homes in the province which were experiencing severe shortages of Personal Support Workers (PSWs) and Registered Nurses (RNs). The reports documented that patients were “not bathed for several weeks” and “significant gross fecal contamination was noted in numerous patient rooms” (Mialkowski 2020: B-1/3). In addition, “Morale and well-being of staff” were poor: “Many are overworked, seem burned out and have no time off” (Mialkowski A-2/3). PSWs were “often rushed and leave food on table but patients often cannot reach or cannot feed themselves (therefore they miss meals or do not receive meal for hours)” (Mialkowski B3/3). Palliative care medication was often not administered (Mialkowski A-1/3), and patients were “observed crying for help with staff not responding for 30 minutes to over 2 hours” (Mialkowski B-1/3). Medical doctors were not present in the homes and “had to be accessed by phone;” they were “not always within reach” (Mialkowski A-2/3). The military personnel also reported a “near 100% contamination rate for equipment, patients and overall facility” (Mialkowski B1/3), as well as a “general culture of fear to use supplies because they cost money (fluid bags, dressings, gowns, gloves, etc.)” (Mialkowski A-1/3). Finally, as the military reports detailed, “people are often sedated with narcotics when they are likely just sad or depressed in a context where there isn’t the staffing to support the level of care and companionship they need” (Mialkowski A-2/3). The Canadian Forces were only called in to five long-term care homes in Ontario, and as of May 20, 2020, only 63 (10%) of the province’s long-term care homes had experienced outbreaks (Stall et al. 2021: 14). Many dedicated nurses, personal support workers, dietary, recreational and maintenance staff and long-term care administrators struggled to provide the best care possible for their residents under demanding circumstances (Picard 2021: 57). Nonetheless, the long-term care sector as a whole was challenged by staff shortages, inadequate supplies of personal protective equipment (PPE), difficulties with infection prevention and control, and lack of access to COVID-19 testing (Stall et al. 2021: 8).

In June 2020, the high death rate from COVID-19 among long-term care residents was described as a “Canadian tragedy that must not be allowed to happen again” (Holroyd-Leduc and Laupacis 2020). However, in January 2021, part-way through the second wave of COVID-19, history seemed to be repeating itself. In Ontario, 7,090 long-term care residents contracted COVID-19 between September 1, 2020 and January 14, 2021, and 1,237 of these individuals died (Stall et al. 2021: 5). Again, as during the first wave, horrific conditions were reported at some residences, with descriptions of feverish “residents laying in soiled and or soaked briefs, wearing little or no clothing or bedding on bare mattresses that were saturated with urine,” and others “hanging out of beds, moaning, vomiting, crying” (Iqbal 2021). Problems with staffing and resident care were widespread. Surveys conducted in late 2020 by the Ontario Health Coalition indicated that 65% of front-line staff in long-term care homes with outbreaks of more than 10 people reported insufficient staffing to provide adequate daily care to residents, with bathing, grooming, feeding and hydrating particularly affected. In addition, medications were sometimes delayed or forgotten, inadequate housekeeping compromised infection control, and bed linens could not be changed (Ontario Health Coalition 2020a). As a group of Ontario doctors wrote on January 29, 2021, “Ontario’s long-term care sector is in a grave humanitarian crisis (Doctors for Justice in LTC 2021).

Antecedents: the structure of long-term care in Ontario

Canadians frequently allude to their publicly funded healthcare system as a key marker of the differences between Canada and the United States, where private health insurance is necessary for most sectors of the population. As Leibing (2020: 221) observes, “the image of Canada as a progressive caring country … . (is) often evoked when describing Canada’s approach to health care as superior to the ultra-neoliberal US American system.” In fact, as the following discussion shows, government policies favoring business interests and curbing public spending have also been influential in Canada, particularly with respect to long-term care.

The federal legislation governing health insurance in Canada, the Canada Health Act (CHA), aims “to protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers” (Government of Canada 2020). Every province or territory operates its own health insurance plan and receives federal funding for healthcare, assuming the criteria and conditions of the CHA are fulfilled. Provinces and territories are required to provide medically necessary in-patient and out-patient hospital services and medically required physician services without charge (Government of Canada 2011). However, under the CHA, insurance coverage is not provided for long-term residential health care and social services for cognitively or physically impaired persons unable to care for themselves (Norris 2020). Each province has jurisdiction over long-term care and permits a mix of private and public ownership and funding of long-term care facilities. There are no national standards for the provision of long-term care, although since the beginning of the COVID-19 pandemic, there have been calls for such standards, or for the inclusion of long-term care in the CHA (Norris 2020; Picard 2021: 33–40).

Even though long-term care is not part of Canada’s publicly funded health care system, there is a widespread perception among Canadians that residential care for the frail elderly should be publicly provided, since it is integral to what the CHA terms their “physical and mental well-being.” For this reason, the high percentage of Canadians who have died from COVID-19 in long-term care, and the deplorable conditions in some facilities during the pandemic have generated shock and outrage among Canadians. “This is Canada!” was a phrase that echoed in my interviews, implying that “these types of things should not be happening here,” and highlighting a breach of trust by the state due to its absence of oversight into long-term care.

In 2021, Ontario had 626 long-term care homes totaling 77,257 beds. Long-term care facilities in the province include three operating types: privately owned (58%), nonprofit or charitable (24%), and municipally owned (16%). All are licensed, regulated, and partly funded by the Ontario Ministry of Health and Long-Term Care (MOHLTC) and governed by provincial legislation, the Long-Term Care Homes Act (Stall et al. 2021: 1). In some cases, private corporations manage nonprofit or charitable long-term care residences under contract from the nonprofit organizations that own the facilities.

The MOHLTC provides funding to long-term care operators to cover costs of staff, nursing and personal care supplies, social and recreational programs, support services, and raw food used in meal preparation. Residents pay an accommodation fee to the home operator that is used to fund non-care staff, and expenses such as utilities, mortgages, building maintenance and insurance. Operators can also use this accommodation fee to make a return on their investment. The MOHLTC sets the rates for the accommodation fee, varying between 62 CanD and 89 CanD per day depending upon room type, and subsidizes low-income residents (OLTCA 2021a; 2021b). Municipally owned facilities receive additional public funding from the jurisdiction that operates them, to supplement MOHLTC funding.

The nursing and personal care portion of the MOHLTC funding for each long-term care home varies according to the Case-Mix-Index (CMI), which measures the relative complexity and care needs of patients. However, the CMI is always based on data from previous years and therefore does not accurately represent the actual level of resident needs (RNAO 2018: 3). In addition, “Over the last several years, the complexity of residents living in Ontario LTC homes has substantially increased, with residents being older and having increased multimorbidity, polypharmacy and more extensive levels of physical and cognitive impairment” (Stall et al. 2021: 4). In fact, since 2010, only people with “high or very high physical and cognitive challenges” have been eligible for admission to long-term care homes in Ontario (RNAO 2018: 2). In 2020, there were 36,000 Ontario residents on the waiting list for a long-term care placement, with wait times averaging 100–150 days (Picard 2021: 54).¹

In January 2021, the Ontario COVID-19 Science Advisory Table presented data showing that during the first wave of the pandemic, “Homes with for-profit status had outbreaks with nearly twice as many residents infected and 78% more resident deaths compared with non-profit homes” (Stall et al. 2021: 12). These higher levels of infection and mortality are related to the chain ownership of for-profit homes and the fact that the for-profit long-term care sector has a higher proportion of older homes “that meet or fall below design standards established in the year 1972” (Stall et al. 2021: 13). Long-term care homes meeting or falling below the 1972 design standards contain rooms housing up to four occupants sharing a bathroom, resulting in crowding and infection spread. The proportion of privately operated long-term care facilities in Ontario expanded significantly during the period 1995–2000, under the Progressive Conservative Party government of Premier Mike Harris, whose “Common Sense Revolution” introduced deregulation, tax cuts, and spending cuts for social services (Canadian Centre for Policy Alternatives 2015; Armstrong et al. 2019: 89–91). During the deregulation of the 1990s, large corporate chains bought out small locally owned facilities, most of which were older buildings with four bed wards. However, the new corporate owners were exempted from regulations mandating only one or two bed rooms in newly constructed facilities (Stevens 2020a).

Significantly, after leaving office, Premier Harris joined the board of directors of Chartwell Retirement Residences, Canada’s largest retirement home corporation, which also operates long-term care homes. He has served as Chair of the Chartwell board since 2003, and as of January 2021, had received approximately 3.5 CanD million including salary and shares for his services (Milstead 2021a, 2021b). Another former conservative premier of Ontario, Bill Davis, is past chair of the board of directors of Revera Inc., Canada’s second largest owner of long-term care homes and retirement residences (Stevens 2020b). The relationship between government and corporate for-profit long-term care in Canada is further complicated by the fact that Revera is 100% owned by the Public Sector Pension Investment Board, a government of Canada owned corporation that manages the pension contributions of federal public sector workers (Stevens 2020b). A third former Ontario premier, Conservative Ernie Eves, who succeeded Harris, is also a member of a long-term care corporate board. Moreover, during the pandemic, lobbyists for the long-term care sector included former staff of current Conservative premier, Doug Ford, and of some of his cabinet ministers (Leslie 2020).

The extent to which long-term care in Canada is associated with business and real estate interests is evident from the profiles of the 2020 board members of Canada’s largest for-profit long-term care and retirement home chains (Chartwell, Revera, Extendicare and Sienna). Of the directors, 40% had backgrounds in real estate, 17% in finance, 17% in other corporate sectors, 14% in private health services or pharmaceuticals, while only 9% were certified healthcare professionals (Press Progress 2020).

In addition to promoting for-profit corporate ownership, neoliberal policies have also impacted the level of quality control and consumer protection in the Ontario long-term care system. During the Harris “Common Sense Revolution”, annual unannounced three-to-seven day inspections of all Ontario long-term care homes, mandated by the previous government, were discontinued. Although reinstated after 2000, these comprehensive inspections were unpopular with long-term care home operators, who lobbied successive governments to prioritize shorter, less comprehensive inspections focusing on specific complaints or critical incident reports. During 2018, the year when the current Ontario Conservative government came to power, comprehensive Resident Quality Inspections were carried out in only half of Ontario’s 626 long-term care homes, compared with almost all in 2015, 2016 and 2017. In 2019, the number of homes receiving these inspections decreased to nine (Ontario Health Coalition 2020b).

Alongside corporate ownership and declining standards of inspection, understaffing in Ontario long-term care homes was recognized as a crisis before the pandemic. In terms of numbers of hours of direct care per resident per day, for-profit chain long-term care homes have the lowest staffing level in Ontario’s long-term care sector, 2.63 hours, as opposed to the recommended minimum of 4.1 hours of direct care (Armstrong et al. 2019:95; Estabrooks et al. 2020: 21). A December 2019 report on PSW shortages revealed that “in virtually every long-term care home, on virtually every shift, long-term care homes are working short staffed … ” (Unifor 2019). Significantly, “short staffed” here means that some of the PSWs scheduled to work on a shift in a home are absent from work, not that the home is short-staffed relative to a government regulated minimum ratio of PSWs to long-term care residents. There is no legislation in Ontario concerning minimum staff-to-resident ratios beyond a requirement that one RN be present in each home at all times, regardless of the number of residents (RNAO 2018: 2). As a result, long-term care operators can decide on the number of PSWs to hire as long as there is a single RN present, whether the home has 60 occupants or 400. Likewise, each operator can set the compensation rate for PSWs, and in most homes, this is only slightly higher than minimum wage (Stevens 2020a).

In 2018, there were 50,000 PSWs in Ontario long-term care homes sharing the equivalent of 32,700 full-time positions (Stall et al. 2021: 20). Consequently, many PSWs needed to work several part-time jobs to make a full-time income, although in mid-April 2020, to avoid infection spreading, all long-term care personnel, including PSWs, were required to work in only one home during the pandemic (Ontario 2020b). As part-time employees, many PSWs receive no benefits. Moreover, Ontario PSWs are overwhelmingly women (90%) and almost half (41%) are people of color. Physically and psychologically challenging conditions working with residents, of whom 90% have some form of cognitive impairment and 86% need extensive assistance with activities of daily living, make burnout almost unavoidable, and discourage workers from entering the sector (Stall et al. 2021:4: 20–21). Burnout is also a reality for RNs in long-term care, and wages are lower than those of hospital sector nurses. As a result, recruitment and retention of nursing staff is a key problem (Long-Term Care Staffing Study Advisory Group 2020: 22–23).

To summarize, multiple factors contributed to the high rates of COVID-19 infection and mortality in Ontario’s long-term care homes in 2020 and 2021. Policies dating back 25 years favored for-profit, corporate ownership of long-term care homes, failed to require homes that did not meet 1972 design standards to modernize, diminished frequency of comprehensive inspections, and generated a staffing crisis. These problems were compounded by an aging population, together with the increasingly complex medical profile of people entering long-term care and their high levels of cognitive impairment, as well as an overall lack of pandemic preparedness in the province (Armstrong et al. 2019; Marrocco et al. 2021; Picard 2021: 40).

A public inquiry pre-dating the pandemic (Gillese 2019) and a host of reports in 2020 and 2021 have outlined the deficits of long-term care in Ontario and made trenchant recommendations for reform (Estabrooks et al. 2020; CFHI and CPSI 2020; Long-Term Care Staffing Study Advisory Group 2020; RNAO 2020a, 2020b; Armstrong, Armstrong and Bourgeault 2020; Marrocco et al. 2021; Picard 2021). Rather than simply reiterating these lists of recommendations, here I highlight the experience of stakeholders and the powerful emotions expressed in their narratives. By presenting compelling portraits of people impacted by the institutional shortcomings of long-term care in Ontario, I hope to de-anonymize the statistics and present a more influential argument for systemic transformation.

In the sections that follow, I focus on three inter-connected issues that emerged as prominent concerns in my interviews. The first and primary issue is lack of hands-on frontline caregiving staff in long-term care homes. Directly related to inadequate staffing, the second issue is the decline in residents’ physical and mental health during the period of lockdown. The final issue is the pressing demand from family members to be integrated directly into the caregiving team for their relatives in long-term care. In many cases, family members wish to be centrally involved in the daily care of their relatives, giving assistance with feeding, dressing, washing, grooming, toileting, ambulatory care and even peri-care, in addition to providing mental stimulation, social engagement and emotional solace. Family members argue that in the face of staff shortages, it is imperative that they be allowed to carry out these caregiving tasks for their relatives, even under conditions of lockdown. Using a narrative approach, I illustrate these three interlocking themes by recounting the experiences of several of my participants. In all cases, I am using pseudonyms and providing minimal identifying details, to maintain participants’ anonymity and confidentiality.

Ronald

Ronald lost his wife during the pandemic in April 2020 in one of the hardest hit, for-profit long-term care homes. She had been diagnosed with Huntington’s disease 15 years earlier, and had been living in the same long-term care residence for most of that period, after Ronald could no longer care for her at home. When she moved into long-term care, Ronald promised his wife that he would accompany her on her journey through Huntington’s. In recent years, he spent between 12 and 16 hours with her daily and essentially assumed the role of his wife’s main caregiver. In particular, after she started getting frequent urinary tract infections and sores and blisters in her genital area, Ronald took over peri-care because he attributed these symptoms to inadequate cleaning after incontinence products were changed. From Ronald’s perspective, the PSWs looking after his wife were always rushed, and did not have time to do appropriate peri-care. They were unable to focus on one resident because they were always pressured to move on to the next. Those PSWs who tried to take their time and tailor their approach to an individual’s needs were told to “pick up the pace” or reported to administration for not doing their share. Under “normal” conditions, prior to the pandemic, PSWs and nurses had no time for companionship with residents, no time for compassionate listening or conversation.

Ronald observed that oral hygiene at the residence was a “disaster.” His wife had a partial denture when she went into long-term care, but all her teeth had to be removed due to decay caused by inadequate teeth cleaning, again the result of the high ratio of residents to PSWs. Feeding his wife was an especially time-consuming task: it would often take Ronald an hour or more to ensure she ate her meal and received sufficient fluids. Since staff were unable to dedicate that amount of time to her, Ronald fed his wife nearly all her meals.

Ronald’s last day with his wife at her residence was March 13, 2020. He believes that the staff shortages he witnessed under “normal” operating conditions were only aggravated during the lockdown, when staff themselves became ill or stopped working because of concerns about infection. During the lockdown, Ronald tried to maintain contact with his wife by phoning the residence daily. Initially, a nurse would bring his wife to a window in the public area and he would stand outside with his phone. The nurse would hold a phone up for his wife so she could listen to him and wave. However, as the lockdown progressed, he was told that these window visits were no longer possible because of insufficient staff. Sometimes staff would take the phone to his wife and leave it with her, but since she lacked the muscle tone to hold it, this gesture was useless. Often, when Ronald would phone, he had to call back repeatedly before anyone would answer, and he was never given specific information about his wife’s condition.

Six weeks after the lockdown, Ronald was notified that his wife was dying. He was able to enter the home for a palliative visit; asked to leave after two hours, he refused, and ended up staying with her for several days until she passed away, contracting COVID-19 himself. Ronald questions whether his wife died from COVID, or from what he refers to as “total neglect.” In his view it is unlikely that anyone was taking the hour it required to feed and provide fluids to his wife at each mealtime during the lockdown when he was absent, and he worries that her rapid decline over six weeks was the result of inadequate hydration and nutrition.

Bridie

A similar experience was shared by Bridie and her sisters, whose elderly mother had advanced Alzheimer’s and was living in a medium-sized for-profit long-term care residence. The sisters realized that inadequate staffing was impacting their mother’s care under normal operating conditions over several years prior to COVID, so they had hired a private companion to supplement the time the family was spending with her. As they told me,

If that person was not there for two hours every afternoon, our mother would not have had any water or juice, she wouldn’t have had any engagement because she had advanced dementia, she was in a wheelchair, she couldn’t engage anybody and because they had so few staff running the entertainment programs, mum was just set off in a corner … The long-term care programs really do not address the needs of residents with advanced Alzheimer’s and dementia … so having the person there to work with her for two hours every afternoon, they could take her to the music, they could take her to the bowling and throw the ball with her, at least make sure she had hydration and a little snack in the afternoon, … and the afternoons were just terribly long for her to just sit in a chair in a corner.²

After breaking an arm, their mother had lost the use of her hand. With no access to regular physiotherapy, her fingers became permanently clenched. The sisters explained

… we would try to pry the hand open to put something in to absorb the perspiration, `cause it would get quite smelly. But again, that was us doing that, we didn’t often see the staff noticing those smaller details. It was more in a function mode to get through the basics and the essentials.

During the COVID lockdown, the sisters told me they

… were doing window visits and the staff would be in tears, they were tearful, emotionally and physically exhausted from dealing with the crisis. Some of them had worked twelve twelve-hour shifts in a row. There were [several] residents who died of COVID. Then there were a number of people who died, who weren’t COVID positive, like mum, who died because they were not getting proper nutrition, hydration and stimulation, and they just withdrew and shrivelled. And that’s what we saw with our mum.

The sisters described how at the beginning of the lockdown, when they would go for window visits, their mother was somewhat alert, talking to family members through the window. But “as the days went on, she just withdrew, into herself, vacant stare, staring.” They question whether their mother was receiving adequate physical care, let alone social stimulation:

But no one was giving her fluids and all that. At one point we were told that they didn’t have enough staff to do three meals a day, they were doing two meals a day.

The sisters were able do a Facetime visit with their mother on the final day of her life, but by this point, her breathing had become very shallow and she was no longer conscious.

Chantal and Pierre

In Chantal’s opinion, “all long-term care residents and their families suffered as a result of the pandemic, even if the resident never contracted the disease.” This was the case for Chantal’s husband, Pierre, who is 68 and has early onset Alzheimer’s. He has been living in a dementia unit in long-term care for several years, ever since Chantal, who has mobility issues of her own, found it impossible to care for him safely at home. Pierre has difficulty communicating, which is aggravated by a hearing impairment. Pierre’s interaction with staff and other residents in long-term care was impeded by the loss of his hearing aids shortly after he moved into the residence. This is not an isolated problem: many of my participants remarked that their relatives’ hearing aids were quickly lost in long-term care or broken and not fixed.

Chantal recalled that even prior to COVID, the numbers of PSWs and nurses in Pierre’s unit seemed low relative to the level of care residents needed: “The experience on the floor, the staffing was getting to be less and less in the last couple of years, there was never enough staff and I don’t know how qualified they were.” Whenever she expressed a concern to one particular supervisor, Chantal was told: “Well what do you expect me to do? I have three floors to worry about.” Pierre was fully mobile, but as his capacity for language diminished, he started to make incoherent verbalizations, which upset his less cognitively impaired roommate. During the lockdown, Chantal received a call explaining that Pierre had been found on the floor and was limping. Staff suspected that he had been in an altercation with his roommate, causing the fall. Three days later, an X-ray revealed that Pierre had a broken hip. He was hospitalized but after surgery is now confined to a wheelchair. Chantal is concerned that Pierre’s fall and subsequent inability to move independently could have been avoided if there had been more supervision of Pierre and his roommate, which might have prevented the altercation.

Pierre’s brother is also actively involved in Pierre’s care. An e-mail he sent reveals a concern shared by many family members: that residents’ needs might be overlooked, due to staff shortages, both prior to and during COVID-19:

Before the outbreak in the residence, I had visited Pierre on a regular basis and had been able to inform the staff of some needs that Pierre had that the staff was not aware of: pain in his fingers or in his stomach, the fact that he seemed cold and needed a sweater, the fact that he had not been shaved in several days, that his bedsheets were wet and needed changing. I also had to intervene once because he was still in his night clothes at 11 in the morning. I understood that the residence was understaffed and that it was not always easy for the personnel to always provide timely care for Pierre. I therefore felt that my regular visits provided a necessary check and control on the care he was getting. When the building was completely shut down to visitors, I could not help but wonder if Pierre was getting proper care …

Family members like Pierre’s brother envisaged themselves as key members of the caregiving team for their relatives, and keenly regretted being prevented from contributing to their care during the lockdown. In Canada as a whole, 4.5 million Canadians reported providing care to parents or spouses in 2018. Of these family caregivers, 13% were caring for relatives in care facilities, many for 10 hours or more weekly (Long-Term Care Staffing Study Advisory Group 2020: 15–16). As Janelle Taylor and others have emphasized, caregiving practices extend beyond individual relationships to encompass social networks connecting multiple actors that “recognize” the personhood of those cared for (Seaman 2020; Taylor 2008).

Melissa

This type of caregiving network is illustrated by the experience of Melissa and her five siblings, whose parents lived in different units of the same long-term care home. Melissa’s father had Alzheimer’s and entered a dementia unit after his wife could no longer care for him, since she has a Parkinson’s-related degenerative disorder. Melissa and her siblings visited their father daily, and supported their mother at her home. When Melissa’s mother’s condition deteriorated, she was able to enter the same long-term care residence as her husband. However, Melissa continued to do all her laundry and provided home-cooked frozen meals for her mother to heat in the microwave in her room. Every day, one or more of the six siblings visited their parents and provided a major component of their parents’ care. One sister would visit at lunchtime to help her father eat, another came five days each week to help her mother shower. A third took their mother to church each Sunday. Melissa herself provided Friday evening entertainment for her parents. When COVID struck, the siblings accepted the need for lockdown, and tried to maintain contact with their parents by window visits. Sadly, their father could not understand why they were unable to enter the residence, and Melissa recalls, “I think he just felt that we had deserted him.” Following one window visit, he became highly agitated, fell, and sprained his ankle, after which he was no longer able to walk. At this point, Melissa says, “it was like he gave up,” refusing to eat. Three weeks later, he passed away. As Melissa reflects, “My dad didn’t die from COVID, but it was a factor in his death.”

By September 2020, in response to public concerns, the Ontario government instituted a policy enabling long-term care residents to appoint two “essential caregivers” who would receive frequent COVID-19 testing and PPE to participate in the care of their family member. However, there has been “ongoing uncertainty” about this policy which has made it difficult in some cases for essential family caregivers “to regularly access homes” during the pandemic’s second wave (Stall et al. 2021: 23–4). Melissa and one of her sisters received essential caregiver status and were visiting their mother on alternating days to help her shower and get ready for bed. On Sundays, Melissa brought home-cooked meals for the week ahead. The sisters received bi-weekly COVID testing, and made sure to wear their masks inside the residence. As Melissa told the long-term care home staff when she became an essential caregiver for her mother, “We’re going to protect her with everything. Forgive me for this, but we only have one parent left. And … we’re going to do everything in our power to make sure she’s OK.”

Carina

To this point, I have shared the perspectives of family members. However, I also spoke with long-term care administrators and staff whose experiences confirmed the need for higher staffing ratios relative to residents, even under conditions of “business as usual,” much less during a pandemic. Here Carina, a nurse in a small for-profit long-term care residence, describes the difficulties experienced by PSWs during the pre-COVID morning routine of preparing residents for breakfast:

Staff just found it impossible to get 8 or 10 or 12 residents, depending on the number of PSWs on shift, ready in one hour and get them all down to the dining-room. You’re getting people out of bed, you’re getting them washed, you’re getting them dressed, you’re getting them into the wheelchair ready to go down to the dining room. It’s a big, big challenge. You don’t come along to a dementia patient and just say, “Hey, it’s time to get out of bed.” I don’t know how anyone could possibly think that we can give good care, let alone excellent care, when you have 8 to 10 residents that you have to get ready in an hour or an hour and a half. When you look at the simple math of that, each resident gets, at one point they said they were allowed 6 minutes per resident. That’s absurd, that’s totally absurd.

Carina explained how PSWs go to heroic efforts to cope, often arriving at work before their shift starts, and streamlining their tasks:

Staff are very efficient, because in the morning, staff often get here early, because they know they’ve got a challenge ahead of them. So they would get all the towels out ahead of time, they would get all the clothes out ahead of time, they would get everything ready so that they could get their residents up and going. They would maybe deal with the easiest ones first, to get as many up as possible. They often bounce back and forth between two residents if they’re able to do that, like if they’re cognitively and physically able to leave a person on the toilet, let’s say, they bounce to the resident in the next room and say, “Hey, let’s get you out of bed, let’s get your face washed,” or whatever. They are very, very efficient. And they work very hard.

During the period of lockdown after mid-March 2020, the facility where Carina works experienced chronic staff shortages. There have been no cases of COVID in the residence and Carina says staff are “phenomenal, they do their best, they are very careful.” However, she claims “we are running ourselves ragged.” Staff do extra shifts to cover for people who are unavailable, sometimes staying an additional four hours without a break. The workload has increased “because we’re taking temperatures on everyone in the building twice a day and watching for other symptoms such as a new cough, … we don’t have any more staff, you just kind of fit it in.” In addition, the extra measures required for hygiene and sanitation during COVID pose challenges:

Physically, when people are in isolation, there’s a lot of extra work. You’re performing hand hygiene, then gowning and gloving and putting on equipment, and it takes longer, much longer. It puts you behind in all your work. Staff are chronically fighting the clock, they’re behind. So it’s a never-ending challenge.

Serving meals to residents confined to their rooms during the lockdown required a marathon effort. Often for 60 residents, there were only six PSWs and two nurses in the home at supper time, to deliver “the trays, feed the residents who are unable to feed themselves or those who have lost interest in feeding themselves, and hand out meals to those in the dining rooms and activity area, cut up meals, pour drinks and then gather up trays and clean up.” Carina typically works evenings, and she explained that with sundowning, “we have a lot of increased behaviors on evenings … . But since COVID, it has really increased. It has sky-rocketed since COVID. There’s a lot more anxiety, yes and a lot more behaviors.” The increase in responsive behaviors creates more work for staff who are already pushed to the limit. As Carina points out, “You can’t just ignore [the behaviors]. They won’t go away. Some nurses will give out more PRNs,³ more medications, to sedate, or calm, or whatever.”

Carina’s observations about responsive behaviors relate to the second theme mentioned at the beginning of this article: the impact of the lockdown on residents’ mental and physical well-being. As she observes,

You don’t have that physical connection with the family, or with us because of the time constraints, and so they have declined to the point where ‘I don’t want to get out of my bed anymore, I don’t want to live anymore.’ We’re hearing that a lot more. Like, ‘What is there to live for?’

She has seen how social isolation has led to anxiety and depression, among both dementia patients and those who are more cognitively able. Carina’s observations are corroborated by research documenting increased prescribing of anti-depressants, anti-anxiety medications and anti-psychotics during the pandemic as well as “a constellation of resident clinical issues … which has been termed ‘confinement syndrome,’ a term appropriated from the medical literature describing the symptoms experienced by persons placed in solitary confinement from intense anxiety and sensory deprivation” (Stall et al. 2021: 17).

While window visits and socially distanced indoor and outdoor visits have helped ease depression and loneliness for some residents, for others these opportunities to see loved ones have actually increased mental stress. The frustration of being close, but unable to touch, one’s relatives, and the difficulties of communicating through masks, at a distance, especially when residents have hearing impairments, have led to anxiety and behavioral challenges:

Sometimes we find after a visit, we find residents are very highly agitated, to the point where we have to give them a PRN, because they are so agitated. And for the occasional resident, we have actually got to the point where we give them a PRN before a visit, because we know they are going to become agitated. The social isolation and social distancing have been very hard on our clientele.

Carina commented that more funding for staff has been “a cry for years” throughout the long-term care system. When asked why she thought this cry had been ignored, she replied, “That’s a very good question … I don’t know, I think people … they think, ‘Well, they’re old people, they don’t matter.’”

Conclusion

Both family members and long-term care personnel interviewed forcefully conveyed the message that systemic flaws in Ontario’s long-term care system relating to numbers of staff per resident prevent frontline workers from doing their jobs in a way that enables them to perceive, interact with and meet the needs of residents as persons. The picture painted by my respondents is not one of sudden crisis. Rather, they attest to “ordinary” lapses in institutional care prior to COVID-19, which were mitigated by family members’ efforts to provide additional care, often requiring time-intensive participation in feeding, hygiene and social support for long-term care residents.⁴ From the perspective of family caregivers, once they were no longer able to supplement the work of PSWs during the lockdown, and staff shortages were exacerbated by illness or fear of infection, the fragile equilibrium maintaining the day-to-day functioning of the system was overturned. Family members’ perceptions of the vulnerability of long-term care prior to COVID-19 dovetail with the findings of researchers investigating the crisis. As the Royal Society of Canada Working Group on Long-Term Care observed, prior to COVID-19, the long-term care sector had been “just managing” in the face of longstanding deficiencies in staffing, governance, and funding permeating the system (Estabrooks et al. 2020:5). To paraphrase Povinelli, chronic conditions of “cruddiness” persisting over two decades in Ontario’s long-term care homes were pushed to the limit by the pandemic and culminated in a catastrophe.

The story of the disaster in long-term care in Ontario during COVID-19 is not a simple morality tale of victims and oppressors. Instead, as we have seen in Carina’s narrative and the observations made by Bridie and other respondents about the despair experienced by long-term care staff, there are multiple victims in this tragedy: residents, family members, PSWs and nurses. Moreover, despite public recriminations against the Ontario premier and minister of health and long-term care, there are no single, identifiably evil oppressors. Rather, the crisis that transpired in Ontario’s long-term care during 2020 and 2021 is the product of larger systemic policies through successive provincial governments that have framed public expenditure on social welfare as extravagant and unnecessary, while privileging corporate interests. At the grassroots level, such policies played out in the type of workplace culture observed by the Canadian Forces in the most critically affected long-term care homes, where PSWs were afraid of being criticized by administrators for using essential supplies “because they cost money” (A-1/3). Meanwhile, according to one investigation, privately owned, for-profit long-term care homes in Ontario employed 17% fewer staff than nonprofit and municipally owned homes, and received approximately “$138.5 million in government COVID relief funding while paying out 171 CanD million in dividends to shareholders” during the first three quarters of 2020 (Stevens 2021).

Certainly, the comments of interviewees, like Ronald, who described their family members as being “warehoused,” or “treated like a piece of meat,” evoke images of bare life. In Ontario and throughout Canada, as in the US, long-term care homes have too often been zones of exception and abandonment, during and before COVID-19. Questions must be raised about broader cultural attitudes among the temporarily able-bodied toward aging, disability and death that make it politically and socially unproblematic under “ordinary” conditions for the elderly to be isolated in institutions where corporations can profit from providing them with less than adequate care (Scheper-Hughes 2010; Taylor 2008). The widespread aversion to aging and its associated bodily and mental deterioration render it acceptable for these processes to be sequestered from public view. Just as Lamb (2018: 277) suggests for the US, in Canada too, “cultural and moral aspirations for sustained adulthood, independence and a sense of personal-bodily control impact not only daily life practices but also the ways our government strives to care for its aging population.”

Like the frail elderly who reside in long-term care, the PSWs who work in these facilities – racialized, precariously-employed women – belong to the sector of the population hardest hit by COVID-19 (Stall et al. 2021: 21). As Team and Manderson have so powerfully observed, “pandemics … expose the entwining of the personal, economics and politics” making structural vulnerabilities starkly visible (2020: 673). Both residents and workers in Ontario’s long-term care system have been marginalized by policies that erode the possibilities for recognition of their personhood. By attending to the voices of stakeholders in the system, and elucidating the historical antecedents of the current situation, I have sought in this article to provide the kind of simultaneously critical and nuanced, “ideal ethnography” of COVID-19 for which Cohen and Leibing have advocated.

Acknowledgments

This research was approved by the McMaster Research Ethics Board: MREB#4887. I am grateful to the 94 family members and long-term care staff who shared their stories with me. Although to maintain anonymity I cannot thank them by name, it was a privilege to speak with every one of these individuals. Many participants generously sent me documents or links to important online publications. Cal Biruk, Kathryn Goldfarb, Loa Gordon, Caroline Brettell, Basit Iqbal, Stephen Jones, Deborah Reed-Danahay, Yana Stainova, Daina Stanley, Janelle Taylor, and three anonymous reviewers for Medical Anthropology provided helpful suggestions and encouragement during the writing of this article. Thanks to Laura Tamblyn Watts of CanAge, Dr. Samir Sinha of the National Institute on Ageing at Ryerson University and Dr. Russell Goldman of Mount Sinai Hospital, Toronto, for discussions while planning the project. CanAge and Family Councils Ontario kindly provided assistance with publicizing the study.

Additional information

Funding

Research funded by the McMaster University Professional Development Allowance.

Notes on contributors

Ellen Badone

Ellen Badone (PhD, Anthropology, University of California Berkeley 1985) is a professor in the departments of Anthropology and Religious Studies at McMaster University. Her publications include The Appointed Hour: Death, Worldview and Social Change in Brittany (California 1989), Religious Orthodoxy and Popular Faith in European Society (editor, Princeton 1991), Intersecting Journeys: The Anthropology of Pilgrimage and Tourism (co-edited with Sharon Roseman, Illinois 2004), as well as articles in Culture, Medicine and Society, Medical Anthropology, American Ethnologist, and Material Religion.

Notes

1. For residences with excellent reputations for quality care – often nonprofit or municipally owned – wait times can extend up to three or four years. See Armstrong and Armstrong (2019: 23).

2. See Buch (2013) for discussion of how hired caregivers sustain the relational personhood of elderly clients while reproducing stratified social hierarchies.

3. An “as needed” (pro re nata) medication, here for sedation.

4. My findings parallel those of Barken and Armstrong (2019).