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machado: long-term care is still not ok

we are way overdue for significant ltc reform, but until we truly recognize the value of the lives we care for and the essential roles of loved ones, nothing good is going to happen.

by lisa machado

published mar 29, 2024

last updated mar 30, 2024

7 minute read

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7 minute read

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those of us with loved ones in ltc already knew all about the state of so-called "care" long before the pandemic exposed it in all its abhorrence and macabre. getty

“is this how we are living now?” the frustration in her voice was palpable. she had spent most of her life working for non-profit organizations, had just announced that she was striking out on her own as a consultant, was a legit leader and expert in the importance of caregivers, and yet, she could not find a way to cut the red tape that was wrapped tightly around her dad’s calgary long-term care (ltc) home. she was at a loss, she said, describing the challenges she was facing as the primary caregiver to her father who had dementia. from restrictions on visiting and not enough engaging programming to questionable feeding practices, she was wondering if we had learned nothing from covid-19 and what it revealed about ltc homes in canada and the lack of respect and dignity we show the people who live in them.

this conversation came on the heels of an email from “sam” (not his real name) whose 90-something father, who is living with cancer, is facing eviction from his retirement home after the operator declared the building “unsustainable.” he and almost 200 other residents (in most cases, their caregivers) have just four months to find new housing — not an easy task in a city that already has more than 40,000 people waiting for a ltc spot.

then there’s my neighbour down the street who hasn’t visited her mom who has alzheimer’s for a couple of weeks after being advised by her ltc home to stay away until a covid outbreak is resolved (although for easter weekend, the home has offered to stagger visits if families wish to see their loved one). and while it wasn’t clear if the no-visit request was a suggestion or a rule — doesn’t matter — essential visitors, which include caregivers, support workers and people visiting very ill residents or residents receiving end of life care, and government inspectors with a statutory right of entry, are allowed to visit during covid outbreaks. in fact, they can even visit when a resident has symptoms or is in isolation, according to the ministry of long-term care covid-19 response measures.

all this in case you were wondering how ltc is doing.

it was may 2020 when canadians gave a collective gasp as the details of the horrific conditions at some of canada’s long-term care homes were revealed in a canadian armed forces (caf) report. the military, called in to help with outbreaks of covid-19, found shocking examples of neglect and disregard for human dignity, including old food trays stacked in the rooms of residents, vomit and feces on walls, bug infestations, witnessed patients “crying” for help while staff ignored them as well as signs of dehydration and malnutrition.

of course, none of this was a surprise to many of us, because we were living it. those of us with loved ones in ltc already knew all about the state of so-called “care” long before the pandemic exposed it in all its abhorrence and macabre. we had had our hearts broken, watching our loved ones left sleeping in wheelchairs for hours on end, drool soaking their shirts. we were also exhausted from advocating for the basics, like healthy food and time outdoors, and sad. so sad. all along, caregivers knew well the gaps that were robbing ltc residents of dignity, a decent quality of life, and even their lives: underfunding, lack of staff, facilities that were old and in rough shape, and a dangerous absence of accountability. perhaps even more dangerous was the lack of recognition of caregivers as essential partners in their loved ones care.

not much had changed by the time the pandemic slammed into canada’s ltc homes, locking caregivers and loved ones out and residents catastrophically in. people familiar with ltc knew that these homes were no match for covid. images of distraught and confused residents staring out of dirty windows while their families stood outside with signs became the norm, as did painted crosses with names of the dead pushed into ltc lawns as people died, mostly alone. finally, conversations about the dire conditions of ltc life were front-page news instead of sandwiched tightly between stuffy family council meetings and stuffier ltc administrators.

at the end of it all, after countless reports, inspections, and deaths — more than 4000 residents died between march 2020 and april 2022 — the ontario long-term care covid-19 commission published a 426-paged report covering everything from the state of ltc before the pandemic and pandemic preparedness to the emergency response and recommendations on improvements.

around the same time, york university professor pat armstrong was wrapping up a 10-year project that looked at long-term care in four canadian provinces — british columbia, manitoba, ontario and nova scotia — as well as germany, sweden, norway, the united kingdom and the united states. named “re-imagining long-term residential care: an international study of promising practices,” the study, led by armstrong and involving a collection of more than 20 experts, concluded what we all knew: we had to do better when it came to ltc. their recommendations included “more effectively” integrating residential care into the public health care system, stopping privatization and promoting non-profit ownership, ensuring the stockpiling of protective equipment and developing regulations around minimum staffing numbers.

but then there were the more ‘duh’ observations, like the impact that ltc staff have on the quality of life of the people they care for — these relationships often determined the emotional and physical health of residents. the researchers also found that residents and their families cared about laundry, food and cleaning (ummm, of course?). they also concluded that the physical environments of these homes make a difference in how residents behave and communicate with each other and the staff (positively versus negatively). for example, are there things that make life interesting and stimulating, like art on the walls, music playing, an adequate amount of space and access to the outdoors? the width and length of hallways, the number of people sitting at a table during mealtimes and if there was something else to look at other than a t.v. were other factors that were identified as important.

and if these “recommendations” — social connection, comfortable spaces and the ability to get fresh air — didn’t have you wondering what the heck we have been doing in ltc all these years if we already didn’t recognize the importance of these very basic needs, perhaps this will finally push you over the edge to rage: food.

in a story for the conversation, two investigators for the project, robert james, an associate clinical professor in family medicine at mcmaster university, and joel lexchin, an associate professor of family and community medicine at the university of toronto, wrote that when james was the director of a dundas, ont. home in the late 1990s, the province provided $7 worth of food for each resident per day. more than a decade later in 2017, that number had only increased to $8.33 per day — less money than prisons have to feed prisoners who eat on $9.73 per day. in addition to compromising a home’s ability to meet the special dietary requirements of some residents, this virtually non-existent food budget meant that many residents were fed cheap, processed food. (this reminds me of the time my mom dared the cook of the home where my dad lived to taste the slimy beige pile of puréed “bacon” that was breakfast that day and he refused, looking like he would vomit.) the struggle is ridiculously and nonsensically real. james also notes that food in ltc homes are often brought in and reheated — or to use an industry term, re-thermalized — taking away the scent of cooking that can bring comfort to residents.

the project also looked at how other countries administered ltc, and it seems that just about everyone else does it better than we do. homes in germany, for example, had the appropriate number staff, who all shared responsibilities (a nurse would comb a resident’s hair), and residents were engaged by helping with chores, like sweeping or setting tables.

certainly, not every ltc home in canada provides just the bare minimum — or not even — to its residents. there are lots of places that recognize the value of all the things recognized by the researchers, have not forgotten the devastating impact of the pandemic and are working to ensure it never happens again and have taken steps to engage families and caregivers better. they are the ones who have also made the dignity and quality of life of the people who live in their homes a priority. but there are also many that haven’t, continuing to struggle with short-staffing, underfunding, old buildings and overall cruddy management, to the detriment of so many vulnerable people and their families.

we are way overdue for significant ltc reform, but until we truly recognize the value of the lives we care for and the essential roles of loved ones, nothing good is going to happen. in fact, it’s just going to get worse.

lisa machado is the executive producer of healthing’s advocacy & better health. get in touch at lmachado@outlook.com.

lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

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machado: long-term care is still not ok

we are way overdue for significant ltc reform, but until we truly recognize the value of the lives we care for and the essential roles of loved ones, nothing good is going to happen.

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