Living

‘The System Is So Broken’: What It’s Like In Long-Term Care Right Now

The pandemic revealed to the wider world what many within the system already knew: LTC needs a radical overhaul—if not a complete reimagining. But what about the families who currently rely on it?

An Illustration of a senior in a wheelchair with a much smaller middle-aged adult standing in the shadow

(Illustration: Sébastien Thibault)

Nizi calls her mother’s long-term care facility every night. During each call, she asks someone on staff if Maria, 83, has showered and what she’s eaten. In January 2021, for three nights in a row, Nizi was told her mother had only eaten breakfast. She immediately knew something was wrong. At the time, the facility was in the midst of a COVID-19 outbreak. Maria’s nurse practitioner said it was likely that Maria had COVID but had not been tested; first she had refused, and then Nizi says the doctor told her she didn’t want to administer the test, as it might “ruin her rapport” with Maria. On February 5, Maria fell and was hospitalized. In the hospital, she tested positive for COVID-19 and also got her first sponge bath in six weeks.

Maria, who has schizophrenia, has lived in this Toronto-area public facility since 2018. She is independent and spirited, and still a fashionista. She walks down the hallway of her residence as if it’s a catwalk whenever Nizi brings her a new outfit. Before COVID—which caused the deaths of more than 20 residents in her facility—Maria would participate in bingo, birthday parties, exercise classes and creative activities. Nizi would take Maria shopping and to get her hair done. These routines helped strengthen their bond as they navigated Maria’s new reality in long-term care.

When the home went into lockdown in March 2020—as provincial governments across Canada closed LTC facilities to essential caregivers as an infection-control measure—Nizi’s visits were reduced to standing on the other side of Maria’s first-floor window. “The lockdown put a big wedge in our relationship, because Mum thought I had abandoned her. But I didn’t. I just couldn’t get in,” says Nizi.

Without the activities and regular visits from Nizi, Maria became depressed and—like an increasing number of Ontario long-term care residents during lockdown—was prescribed antidepressants. Twenty months after the initial lockdown, Maria says their relationship has recovered, but it’s not the same.

Nizi desperately misses the friendship that she and her mother used to have; the one where she could talk to Maria about everything. She wants to tell Maria about the health problems that she’s having related to constantly needing to advocate for Maria’s care. But Nizi doesn’t want to stress her mother out: Living in a long-term care facility in Canada is stressful enough as it is. Nizi is Maria’s primary caregiver, and the role is grinding her into the ground. When I first talked with Nizi, she had recently been hospitalized for five days due to the stress of being an essential caregiver.

Before she entered long-term care, Maria lived briefly with Nizi’s family, but her schizophrenia was deteriorating, making caring for her more challenging. On four separate occasions, Maria left Nizi’s home in search of her deceased husband, hoping to find him at the intersection where they used to live. Three times, Nizi says that they needed help from police to locate her. The fourth time, Nizi found Maria with a packed bag. Every time Maria left, Nizi’s young son would start shivering with shock over the stress of her disappearances.

“I needed that 24-hour help . . . . It was a very, very hard choice to place Mum in a long-term care home,” says Nizi. She got the call that a spot had opened up at the facility on her son’s seventh birthday. Maria moved in three days later, first into a semi-private room and then into a private room so that she could have her own bathroom. In the beginning, the facility’s care wasn’t so bad, says Nizi. But in March 2020, triggered by the chaos and loneliness of the pandemic, Maria started refusing care from personal support workers (PSWs). As the level of care Maria was receiving deteriorated, Nizi found that making complaints to Ontario’s Ministry of Long-Term Care was her only recourse to ensure that her mom not only had regular baths but received other care, too. In total, the ministry has found 22 instances of non-compliance that Nizi says were related to Maria’s care­—including issues related to her diet and medication.

“I’m just fighting for basic care . . . and shouldn’t be,” says Nizi, exasperated. “These are things that the home should be providing.”

An illustration of a broken, heart-shaped plate

(Illustration: Sébastien Thibault)

Canada’s 2,076 LTC facilities have been understaffed and underfunded for years, but the pandemic kicked the dysfunction into overdrive.

The average amount of reported daily direct care that LTC residents receive—one-on-one time that staff spend with residents to provide for their daily needs, whether that’s help eating, bathing, dressing or toileting—varies by province: In British Columbia, it’s 3.14 hours per day; in Ontario, it’s around two hours and 45 minutes. In 2021, Alberta’s Parkland Institute, in collaboration with CUPE Alberta, a provincial union that represents LTC staff, conducted a survey that showed how understaffing and underfunding have had profound impacts on resident care. Forty-one percent of the Alberta-based workers surveyed felt that current staffing levels were “seldom or never adequate to meet care needs,” and more than 40 percent said that understaffing led to injuries and delayed assistance with meals.

These are concerns echoed by Emily, a PSW at a not-for-profit long-term care facility in southwestern Ontario. On a day when her facility is fully staffed, it has four PSWs for every 30 residents. Each morning, she quickly assesses each of her eight to nine residents to see if anyone needs immediate help. After that, she deftly moves from room to room to get each resident dressed, bathed and into the dining room for breakfast. She only has six minutes with every resident. If one needs more time to do something, she has to make that time up somewhere else. If she needs to use a lift to help a resident out of bed, she runs down the hall to find another PSW to help with the two-person job. At the best of times, it’s a massive challenge to care for everyone.

But if one PSW calls in sick, it means that the remaining three have to do everything for even more people—in less time. “[Even] when we’re fully staffed, we’re running crazy,” says Emily. She has to calculate her actions down to the bowel movements, back washes and daily demeanour of each resident. Every single shift, says Emily—who makes about $21 an hour—you have to mentally prepare yourself to “just go.”

Palliative care physician Dr. Amit Arya has worked in various Ontario LTC facilities and sees this rush regularly. When medications are added to the mix, it can get even harder: If a resident is prescribed something that requires they be monitored every 30 minutes, that leaves very little time for a nurse—who may be caring for 30 other residents, if not more—to do other things, including calling a doctor if they need to discuss the resident’s reaction to the medication. “This is not a system that was ever even designed to look after people that live there, to accommodate their wishes, to provide them good care and to support their families,” he says.

Instead, long-term care homes rely on essential caregivers like Nizi: unpaid family helpers who regularly come into the facility to feed, bathe and provide companionship to their loved ones. This regular contact also allows them to see when protocols are not being followed, which places them in the spot of also being whistle-blowers. “Caregivers are a giant part of why LTC is successful,” says Emily, “because they know their loved ones better than we do.”

But in March 2020, that all changed. Overnight, the thousands of unpaid caregivers who help the long-term care system operate were shut out—with no indication of when they could return. There was no question, says Arya, that this decision would have dire consequences.

Bob is an optimistic guy. Sitting inside a car in a Tim Hortons parking lot beside his daughter Jo-Anne, he tells me over the phone that his current residence is comfortable. In long-term care, “you don’t have the agony of fighting with a construction company anymore,” he says, referencing life as a homeowner. When I ask the 94-year-old how hard it has been to live within the facility during the pandemic, he says, “Each day is a new day, and there’s nothing to fear about it if you know the platform on which you can build a happy environment wherever you are.”

Bob’s cheery demeanour doesn’t betray how difficult his past two years have been. In January 2019, he was hospitalized after several falls. By March, Jo-Anne says she felt pressured to take Bob home from the hospital early so that she wouldn’t lose home support from government-funded PSWs. She quickly assembled a team—PSWs, family members, a few friends—to help accommodate Bob’s return to the condo that he shared with Barbara, his wife of 68 years.

Then, in May 2019, Barbara had a stroke and was hospitalized for months. In September 2019, Bob moved into a long-term care facility west of Toronto as it became financially impossible for Jo-Anne to keep him at home with round-the-clock care. Barbara joined him at the facility that November. When Barbara moved in, she was given a room kitty-​corner to Bob’s, so they could see each other. But she couldn’t get out of bed.

When the pandemic started and residents were confined to their rooms, Jo-Anne estimates that Barbara was alone for 22 hours a day, going in and out of delirium and experiencing terrible, progressive arthritic pain. Jo-Anne says she followed up constantly about her parents’ care: issues like insisting that staff use a lift for Barbara in a way that didn’t hurt her and constantly reminding them to bring Bob to see his wife. During a window visit during this time, Jo-Anne heard her mother scream in pain, but there was nothing she could do. Jo-Anne says she was constantly advocating for the home to implement measures to ease Barbara’s pain—including changing the way her medication was administered—and keep her hydrated. Jo-Anne says that when she would ask staff about the latter, they would say that there was always a glass of water beside her bed (by then, Barbara was quadriplegic). During lockdown, Jo-Anne would call the home twice a day to check in on her mom. If she wanted to talk to Barbara, she needed staff to hold a phone to Barbara’s ear. But they were often too overwhelmed to assist with the calls. Barbara eventually asked if Jo-Anne was mad at her, as she wasn’t calling as often.

On the Friday before Thanksgiving in 2020, Barbara died. For weeks, Jo-Anne tells me through tears, she had tried to get an exemption from lockdown rules to be with Barbara. In September 2020, the Ontario government announced that each LTC resident could designate two essential caregivers for unlimited visits. (Prior to this announcement, there wasn’t a consistent caregiver policy in place across all Ontario homes.) But Jo-Anne says she never received any communication about this. (A spokesperson for the Canadian chain that operates the facility in question told Chatelaine that such news is communicated to family members via email or voicemail updates “as soon as possible after such changes happen.”) Jo-Anne was eventually able to see her mom again before she passed, but she can never make up for the time she lost not knowing the facility was open to visitors.

This facility operates on a for-profit basis, and is located in Ontario’s Halton Region. It has only single-occupancy rooms and as of press time did not have a single death related to COVID-19 per official figures. Jo-Anne asked me not to name it for fear that it could have repercussions for Bob’s care. Of the dozens of people with family in LTC that I spoke to for this story, this was an overwhelming concern.

All of the advocacy for Bob’s care falls on Jo-Anne’s shoulders. She says she has made complaints to the Ministry of Long-Term Care regarding both of her parents’ care, but she’s too overwhelmed to recall the outcomes. She says that the time she spends advocating for Bob has ruined her financially (she’s self-employed) and emotionally. “I’m just so done with it all,” she tells me. “I know most of the people I deal with are kind people, but the system is so broken and the disconnect between admin and front-line [workers] is so acute . . . . I’ve never been so exhausted in my life.”

***

There are two ways in which provincial governments oversee the quality of care that is delivered within long-term care facilities, regardless of whether they are public, private not-for-profit or private for-profit. The first is through routine, unannounced inspections. These allow inspectors to see what the day-to-day operations of an institution are like and make recommendations to improve them. They might look at how medicine is stored, if there are any fire hazards or safety lapses and if the facility is fulfilling its responsibility under various pieces of legislation or regulations.

The second form of oversight is triggered either by a complaint from a family member or other concerned party, or a critical incident. Complaints can be a frustrating, difficult and drawn-out process. In Alberta, for example, anyone with concerns about food, cleanliness or general upkeep of their loved one’s LTC are encouraged to first bring their concerns to their home’s resident-and-family council, which is run by family caregivers and attempts to resolve issues that arise between families and the home. If bringing a complaint to this group doesn’t result in a resolution, a person can lodge a formal complaint with Alberta Health’s Accommodation Standards. But by the time this process plays out, weeks or even months might pass. If a concern was pressing, like unclean living conditions or a problem with a resident’s meals, the resident and their family either must live with the problem in the meantime or find other ways to raise the issue. This process is similar in provinces across Canada.

Any time a patient is injured, harmed or killed by the unintentional actions of staff—and if the impact has nothing to do with an underlying health issue—it must be reported. That also triggers an inspection (albeit one that management is anticipating).

Unannounced, thorough inspections are the backbone of effective compliance, and the reduction of such inspections means family members are often left to pick up the slack. Take, for instance, what has happened in Ontario: Prior to 2018, each long-term care facility in the province had an annual, unannounced inspection. CBC News found that those inspections were nearly eliminated in fall 2018—a few months after Doug Ford’s Conservatives took office. (While most of Ontario’s 626 LTC homes received unannounced inspections in 2015, 2016 and 2017, CBC reports that only nine did in 2019.)

This meant that inspections triggered by complaints and critical incidents became even more important. Not only does this leave a large part of enforcing compliance on the shoulders of family members, it also resulted in less-thorough inspections: An Ontario ministry report from 2015 found that these thorough, unannounced annual inspections were the only kind that were able to consistently identify lapses in infection control. Once Doug Ford became premier, the number of violations of non-compliance found within Ontario’s system dropped by 30 percent. Did this mean that facilities were safer, or only that conducting fewer inspections yields fewer instances of non-compliance?

In 2020, there were zero proactive investigations, called resident quality investigations, conducted. Ontario’s Ministry of Long-Term Care told Chatelaine that it’s working on creating “an improved proactive inspections program” but that the pandemic “sidelined this work until early 2021.”

As a PSW, Emily says that staff rely on family complaints just as much as families do. When staff complain to management, she says, their reports are easy to brush off or delay. But when management hears from a family member, issues are taken more seriously. Complaints can be about anything, from minor issues that could be easily addressed by asking a PSW to do something specific to major ones that try to identify how a resident was harmed by a particular practice. But larger issues are often systemic, and a complaint can only highlight the acute expression of a generalized problem. So while a complaint might result in a specific resident receiving a bath more often, it certainly cannot change protocols within a facility to ensure that all residents have more frequent baths, because bathing is a victim of chronic short staffing rather than a momentary lapse in a staffer’s daily work.

An illustration of two hands—one old, one younger—pressed against a window.

(Illustration: Sébastien Thibault)

In November 2020, Ontario’s Ministry of Long-Term Care conducted a complaints-driven inspection at Maria’s home, including issues raised by Nizi, and found numerous infractions. Some residents’ care plans, which outline the specific care a resident should receive, were not being followed. Facility management failed to ensure that staff were using safe transferring and positioning techniques, resulting in a resident’s fall, as well as other care-related issues. The inspection also found that facility management didn’t follow their own complaints protocol. As a result, the inspector gave the home’s management a written notification indicating that the facility was found to be in non-compliance with provincial regulations. The notice was posted publicly—and that’s it. A 2020 CBC Marketplace investigation found that, out of 10,000 inspection reports completed in Ontario between 2015 and 2019, there were 30,000 written notifications given. None resulted in more serious action. Revoking an operator’s licence is exceedingly rare. Since the pandemic began, in Ontario, just seven retirement residences—all owned by the same family—had their licences revoked. During the hearings held by Ontario’s Long-Term Care COVID-19 Commission in late 2020, commissioners heard that in the 20 years prior to the pandemic, just two LTC facilities had had their licences revoked.

In May 2021, another inspection triggered by complaints at Maria’s LTC home found that bed rails weren’t being used properly, after a resident fell out of bed, among other infractions. Two days earlier, there had been a critical-incident inspection after a resident attacked and injured two other residents. The result of the critical-incident inspection was a voluntary plan of correction, the next level of infraction after a written notice: The facility was compelled to develop a plan to manage and avoid violence. There is no public reporting about whether or not the facility actually developed or implemented this plan.

At Bob’s residence, there were critical-incident and complaints-triggered inspections in December 2020, and another critical-incident inspection in May 2021. During the December 2020 critical-incident inspection, the inspector found that a resident was improperly transferred, resulting in a fall, and that several residents’ needs were not met by their care plans. It was also determined that medication was given to the wrong individual. Two of these infractions also resulted in a voluntary plan of correction. Once again, there is no mechanism in place to ensure that this plan was made.

It’s unfair and unreasonable that regulation and compliance should fall on the shoulders of family members, but that is exactly what has happened. Arya sees families in desperate situations, like those of Nizi and Jo-Anne, all the time. “I have seen the most burnout and the most stress in caregivers when their loved ones are in long-term care—more than any other setting; more than hospice, hospital or home care,” he says. “The time that people have to give to their loved ones is a set-up for burnout.” He thinks the complaints process is essentially futile: “Perhaps it gives people an outlet, but I can’t see it accomplishing anything,” he says. That’s because the problems within the system are far deeper than one nurse or PSW—or one manager or one facility.

***

Nizi and Jo-Anne met last year through a support network that formed during the pandemic and that is anchored by someone they all call Dr. ​V: Vivian Stamatopoulos, a sociology professor at Ontario Tech University, who has, for the past 20 months and counting, been an outspoken advocate for LTC residents and their families.

With Dr. V’s help, a community of essential caregivers shares advice on how to advocate for their loved ones and bring concerns they have directly to politicians. She is stunned by what she has witnessed during the pandemic: “I’ve never seen this level of trauma, pain and injustice,” Stamatopoulos says. She says that the essential caregivers in her network have all developed “trademarks” of depression and trauma. And when families’ only hope for adequate care for their loved ones rests in the complaints process, they often find themselves even more burnt-out, trying to follow a drawn-out, bureaucratic process that seems specifically designed to not address underlying systemic problems.

An illustration of an elderly woman sitting in a chair, encased by brick walls

(Illustration: Sébastien Thibault)

It’s clear that long-term care in Canada is not working; not for staff, not for residents’ family members and certainly not for residents. While much of the attention focused on LTC has been related to system reforms, there are many voices that are questioning its existence outright.

Seniors for Social Action Ontario (SSAO), a group that advocates for better care and supports for disabled and elderly Ontarians, is calling for institutional long-term care as we know it to be abolished. It wants LTC replaced with alternative approaches, including home care and community care, such as group homes. It references Denmark’s community-care model as one possibility; the country experienced fewer than half the COVID deaths in LTC that Canada did. (It’s worth noting that Denmark spends nearly equal amounts on home care and institutional care, and banned the development of new LTC homes in the 1980s. Canada, on the other hand, spends most of its long-term care funds on institutional and hospital care.)

Formed in spring 2020, SSAO comprises a group of seniors that includes policy experts, activists and retired professors. It is resolute in its position that the institutional model of long-term care reduces the quality of the care that residents receive. In a presentation to Ontario’s Long-Term Care COVID-19 Commission in December 2020, SSAO argued that “all human conditions get worse in institutions” and that “external environment and trauma create aggressive behaviour.”

SSAO has lots of ideas on what could replace the current institutionalized system of long-term care. Member Kay Wigle, who has since passed away, told the commission about one project that she was involved in 25 years ago. Residents of a group home in London, Ont., who had Down’s syndrome were developing early onset Alzheimer’s as they aged. Rather than looking toward long-term care as the solution, this community agency decided to change how they delivered care within the group home setting. As a result, the facility never had to transfer any of its residents to long-term care: “They’ve used community nursing when needed, but they were also able to do a lot of care that typically a long-term care [facility] may or may not be able to do,” Wigle described.

In its testimony, SSAO noted that implementing some of these changes would require breaking down silos that exist between the ministries of health, social services and long-term care. But there are also changes that could be imposed on the sector as it is that would make a big difference immediately. SSAO argues that LTC facility managers need to be legitimately fearful that they may have their licences revoked. Instead, some of the deadliest operators during the pandemic have recently been granted the right to expand their facilities. Take, for example, Southbridge Care Homes, which has 784 new beds and 1,200 redeveloped beds either under contract with Ontario’s Ministry of Long-Term Care or at various levels of approval within the ministry process. This is in spite of the fact that half of Southbridge’s 26 facilities had a total of 214 COVID-19 related deaths. This figure includes 70 deaths at Orchard Villa in Pickering, Ont.—which experienced one of the province’s deadliest LTC outbreaks and was also the subject of a military report on alarming conditions inside certain LTC facilities. [Editor’s note: Chatelaine’s editor-in-chief’s mother is a resident in a Southbridge home.] There’s no question that Canada needs more capacity to care for the elderly, but governments seem more interested in expanding the status quo rather than exploring alternatives that could be immediately implemented.

***

Ultimately, the sweeping changes that are required to fix the long-term care system require money, creativity, courage and, most importantly, political will. And any changes will likely come far too late for Bob and Maria.

For his part, Bob told me the change he would like to see most in the LTC system is more support for peer-to-peer interaction within his facility. He thinks that incoming residents should be connected with veteran residents to foster relationships that would ease the loneliness he says is common. Facilitating this type of socialization, however, would require more staffing—and as it stands, there aren’t enough staff members at most homes to meet residents’ basic needs, never mind to provide social support.

Since I spoke with Bob, things are going better for him—Jo-Anne describes his health as stable—though life is just as difficult for Jo-Anne. She still meets with either the director of care or the executive director of the facility each week to monitor Bob’s care and address any new concerns that arise. She tells me via email that she’s still exhausted.

Nizi also continues to regularly advocate for her mother’s care and has encouraged other family members at Maria’s residence to file complaints, too. She tells them that she honestly believes her complaints have had a positive impact on the care Maria is receiving, though she wishes it didn’t have to be that way.

The LTC system, as it stands, continues to rely on the unpaid labour of essential caregivers to ensure the delivery of basic care, and to raise the alarm, again and again, when it’s compromised. The trauma that this system perpetuates—for staff, for family members and, most notably, for residents—is a national crisis. And the only solution is a radical upheaval of the status quo. What will it take for our governments to enact one?

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