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It took a pandemic: Why systemic deficiencies in long-term care facilities pose such a danger to our seniors

Kathy Tomlinson and Grant Robertson, The Globe and Mail

At the long-term care home where Edna Tutor worked, she was so overwhelmed by the demands of the job that sometimes she didn’t have time to wash her hands. At another facility, with a revolving door of caregivers, Julieta Padilla feared for the aging residents.

“Things should be made better,” Ms. Padilla said. “Not for us, but for those old people in the nursing home. We can run away, but the people there cannot run away.”

These are frustrated pleas for help – from care providers who are speaking out about grim realities they encounter every day.

The pandemic ravaging Canada’s long-term care facilities is exposing how elderly residents are “sitting ducks” for catching deadly infections, even in the best of times, according to people who work in the sector, partly because of systemic deficiencies that have festered for years.

Because care homes have been hit so hard by the virus, there are pressing concerns about how and why their infection-control practices were sorely lacking before the pandemic hit. The Globe and Mail put those questions to numerous caregivers and their representatives, as well as seniors’ advocates, infectious-disease specialists, representatives for the facilities and their staffing agencies.​

Most pointed to serious, chronic shortcomings – causing perpetual disease and death among frail residents – largely ignored by governments, until now.

“It took a pandemic for them to realize we were speaking the truth and the alarm that we were sending was not false,” said Miranda Ferrier, president of the Canadian Support Workers Association, whose members work in nursing and retirement homes.

“I hate to say it, but this happens all the time in long-term care. It is constant. Every year, we have [flu] outbreaks.”

“There is always a problem, when there is an illness in the homes,” said Jane Meadus, staff lawyer with the Advocacy Centre for the Elderly in Toronto, who pointed out that seniors in care facilities are older, and more vulnerable, than ever.

“But, they are certainly not keeping up with the staffing,” she said. “There doesn’t seem to be the ability to protect people who are living there. They are sitting ducks.”

As the deaths mount from COVID-19, the long-standing problems have been laid bare for policy makers. Last week, Prime Minister Justin Trudeau acknowledged that the country is “failing” its elders. “If you’re angry, frustrated, scared, you’re right to feel this way,” he said. Ontario Premier Doug Ford was visibly shaken before revealing that his 95-year-old mother-in-law had tested positive for COVID-19, inside a long-term care facility.

Several people in the sector said the biggest problem is severe staff shortages, which make it difficult to protect residents from myriad infections, including flus that sweep through entire units, which can be fatal for seniors.

Those illnesses are regularly brought into facilities by part-time or casual caregivers, who are coming and going all the time to make up for the dearth of regular staff.

The Globe interviewed half a dozen of those caregivers, including Ms. Padilla, a personal support worker, who said she was a part-timer responsible for cleaning and dressing up to a dozen ailing residents at a time, at a Toronto facility.

“There is a [staff] shortage. And then someone new is coming … and tomorrow someone else is coming,” said Ms. Padilla, 52, who quit that job recently. “There are changes every moment … it is so exhausting.”

She and other workers requested that The Globe not identify the facilities they worked at.

Some said casual caregivers go into work even when they feel ill, because they don’t have paid sick leave and need the money. They typically work in more than one facility and travel back and forth on public transit, which makes them vulnerable to picking up and spreading illness.

“If you don’t go to work when you are sick, you just get replaced and you lose the hours,” said Charisse Castillo, an Ontario caregiver who has worked in long-term care. She said she didn’t go in sick, but knew others who did – although they weren’t supposed to.

“It’s really unfair to the elderly,” she said. “When there is flu outbreak, they just shut down the floor … but the staff are still working on that floor in the nursing home, then going to another one, for another shift. It happened many times like that before.”

Victor Leung, medical director of infection prevention and control for Providence Health Care, which provides long-term care in Vancouver, said having caregivers with no job security working at several homes is an obvious weakness.

“We know health care workers go to work when they are sick … and you increase the risk,” Dr. Leung said. “Most of the time, they will work at multiple places.”

Thousands of personal support workers actually work for outside staffing agencies, hired by facilities that can’t recruit enough of their own staff, or brought in by families worried about loved ones not getting enough attention.

They are the lowest-paid caregivers, who sometimes make not much more than minimum wage. The agencies they work for charge up to $40 an hour for their services.

Several told The Globe that they are running flat out and barely have time to look after the seniors adequately, let alone wash their hands and change their gloves, which are sometimes rationed or in short supply. Most said they didn’t wear gowns or masks before COVID-19, even during other outbreaks, unlike staff in hospitals.

“You have to do everything fast,” said Ms. Padilla, who said she often didn’t have time to practise proper hygiene.

“How can you wash a bum fast? You are running out of time and you have to do it fast and it is hard … because every minute of every hour you have to utilize.”

The most recent data from Statistics Canada show more than 1,545 residents died in long-term care homes in 2018 from communicable diseases, including the flu, which amounts to almost five deaths a day. (Data exclude Quebec, as comparable statistics from that province were not available). More than half of those deaths were in Ontario, a 30-per-cent increase from 10 years ago.

Meanwhile, warnings about serious deficiencies in long-term care go back more than a decade.

Though the 2003 severe acute respiratory syndrome (SARS) epidemic, which killed 44 people in Canada, didn’t victimize long-term care homes the way other diseases have, the foreshadowing of today’s problems with COVID-19 were definitely there.

Federal SARS Commission investigators could see how exposed long-term care facilities would be if the disease had reached them, particularly given the havoc seasonal flu wreaks on such homes each year.

In the fall of 2005, with the commission in the middle of completing its report, Toronto’s Seven Oaks Long-Term Care Home was hit with an outbreak of Legionnaires’ disease, a bacterial pneumonia that infected at least 135 people, including 70 residents, 39 staff, 21 visitors and five people who lived or worked nearby. Twenty-three residents died.

The SARS Commission saw that outbreak as a warning, and added a chapter to its report, saying the tragedy “showed the bad side of Ontario’s response to SARS,” and putting the blame on “systemic problems that remain unfixed.”

That criticism apparently went unheeded by governments. COVID-19 has also hit Seven Oaks hard. Close to 100 cases have been reported there, including more than a dozen from staff. Two dozen residents have died.

Mario Possamai, a senior adviser on the SARS Commission from 2003 to 2007, said the most critical step in protecting residents of long-term care homes is to make certain the workers at those facilities don’t get sick.

“If you protect the health workers, you protect the residents,” Mr. Possamai told The Globe.

That means facilities must be properly stocked, he said, with N95 respirator masks, gloves, face shields and other equipment – not caught off guard when a virus hits, as so many have been – and gear deployed under the same rigid standards used in hospitals.

“One of the unfortunate things is that workers in long-term care facilities have been seen as the poor cousins of the health care community, when in fact, they should be as protected as nurses in ICU,” Mr. Possamai said.

He compares the spread of disease inside a long-term care home with that of the cruise ships that fell victim to COVID-19, where enclosed spaces became hard to defend once the virus found a way in.

Another problem contributing to deaths in long-term care, which was flagged by several people The Globe talked to, is the facilities themselves, with two to four seniors in a room, shared bathrooms, nowhere to isolate those who are ill and large communal dining rooms.

“They are four at a table and one is coughing and one is sniffing,” said Ms. Tutor, 50, who worked in long-term care a year ago, in Toronto, for an agency. She earned $15 an hour.

“Oh my God, it is hard. So very prone to the spread of a virus, or whatever it might be … we need more staff in the long-term care, so they have time to wash their hands.”

Ms. Tutor described how she had just an hour in the morning to get eight residents up, cleaned and dressed – including those who objected – then down the hall for breakfast, so they could all socialize, in the large dining room.

“But that doesn’t make sense in long-term care,” she said. “Because socializing doesn’t work any more. Many of them just close their eyes and sleep and not talk to each other. Very sad.”

Figures from the Public Health Agency of Canada show that there were 596 reported flu outbreaks, just this season, in long-term care facilities nationwide, a 20-per-cent increase over last year. Those figures do not include the devastation from COVID-19.

The lack of a vaccine is one factor that makes COVID-19 much more serious that the flu. However, federal data show flu viruses are also deadly threats to seniors, including those who are vaccinated. They are inoculated at higher rates than any other group, but the flu vaccine is only 18-per-cent effective at their age.

But the federal agency says reported flu cases dropped in the past month – to the lowest level on record – attributed partly to “social-distancing measures implemented in recent weeks,” which suggests better infection-control practices could also prevent flu deaths in long-term care.

Some caregivers told The Globe that their working conditions are now better than ever, in some respects, since pandemic restrictions were put in place, requiring them to work in only one long-term care facility and providing them with more personal protective equipment.

“We care staff understand the severity of the virus, because even with the regular influenza, we lose residents who can’t overcome it,” said Bing Nabor, who works in a B.C. facility with no COVID-19 cases.

“I am grateful that now they are trying everything they can to slow down the spread.”

Even so, at least one personal support worker in Ontario has died from COVID-19, and dozens more are walking off the job, according to their association, because it is not worth the risk of catching the virus – accelerating an exodus that was already causing alarm.

A 2018 survey of members by the Ontario Personal Support Workers Association, found that one third of 13,427 members questioned had quit jobs recently, 63 per cent of them citing “burnout” as the reason. Another 22 per cent were considering leaving.

Now, the need is more urgent than ever for workers such as Jazer Montillano, who offered to work in a Toronto facility that has several COVID-19 cases.

“On the first day, I was thinking of walking off, you know. When I entered the place, someone died,” Mr. Montillano said. “There is no guarantee people will come for their shift,” he said. “On my second day, I worked 16 hours because no one came for the night shift.”

An agency called Plan A Long Term Care Staffing and Recruitment is one that provides casual workers to Ontario long-term care facilities. Before the pandemic, it says it had 159 facility clients tapping its pool of caregivers. Now, it has 345.

In the face of soaring demand, the agency is losing recruits. Founder Sheri Tomchick said her labour pool, including some 600 personal support workers who make $22 an hour, is now 35-per-cent smaller than before the crisis.

“I’ve been saying ‘We need a long-term care staffing strategy’ for years,” Ms. Tomchick said. “COVID-19 is going to show us exactly what needs to be done to strengthen this sector in the future.”

Several leaders in the health sector were sounding alarm bells about deficient staffing and facilities, before the pandemic hit.

Earlier this year, the Ontario Long Term Care Association, the largest representative of facilities in Canada, told the province in a budget submission that “80% of long-term care homes are having difficulty filling shifts,” while plans to renovate and expand facilities are stalled, caught in red tape.

The association declined The Globe’s request for an interview, but sent a statement saying its members have a continuing “human resources emergency,” caused in part by a “complicated” government funding formula for frontline workers that is “limited” and “unstable.”

In 2016, an association for infectious-disease professionals said in a report that 70 per cent of communicable diseases in health care facilities are preventable. However, Infection Prevention and Control Canada said efforts have been “deficient in the essential resources and components required to be effective.”

Three years before that, the Public Health Agency of Canada put out recommendations for stopping disease spread, including “single rooms with a private toilet” and separate sinks for patients and staff – a setup many long-term care homes don’t have – and “sufficient” personal protective equipment to “maximize protection.”

It also stressed that workers “should stay away from work when infectious with a communicable disease.”

There are other possible solutions to consider, once the current pandemic subsides. Mr. Possamai, from the SARS Commission, said provinces should overhaul long-term care facilities, to upgrade the heating, ventilation and air conditioning (HVAC) systems with similar virus-scrubbing technology that hospitals use.

“That could have real impact,” he said. “I don’t think that you would have this level of outbreak if things like HVAC were to [hospital] levels.”

Several people that The Globe interviewed said they hope the damage COVID-19 has inflicted on Canada’s long-term care system will motivate governments to finally fix all the problems that they have known about for years.

“It’s clear that the lives of people who are living in these homes are completely and totally undervalued,” said Candace Rennick of CUPE, the union representing 30,000 personal support workers in Ontario, many whom have staff jobs in care facilities.

“My father died in a facility recently – and it is a sad state of affairs,” Ms. Rennick said. “This crisis is not new. We have to do a better job for the people who are spending their last days there. Their lives matter.”

The Great Escape

Monica Catto
This first person article by Monica Catto of Mississauga, Ontario, was first published in The Globe and Mail on June 3, 2019

 

Daisy desperately needed a change of scene, so I dropped everything. I am trying to bring more fun, hope and a sense of dignity to my long-term care clients, Monica Catto writes

Rolling her wheelchair down the narrow crowded halls, Daisy is heard before she is seen, “Please? Please? Puleeeeease!!!”

Half of her fellow residents ignore her, while the other half yell at her to shut up. Most of the staff pass by her as if she is invisible, immune to her constant quest for validation. I feel her pain. She’s putting words to what I’ve been feeling almost daily since I began working at this long-term care home. Three months in, I’m no more settled into my new work environment than she is, and this is a place she calls home.

I’ve transferred from a modern facility with a much more vibrant climate, I’m not used to these crowded hallways lined with residents staring blankly at one another or wheeling about aimlessly for lack of anything better to do. I can’t get used to the cockroaches scurrying across the floor of this 45-year-old building, despite frequent fumigations, and I know that if something doesn’t change soon, I’m the one who’s going to be crying out, “Puleeeeease!!!”

With no success, I’ve been looking for a resident who’s willing to stand up from their wheelchair and go for a walk. Most are either too tired, already asleep or just not interested. Resigned, I look over at Daisy and sigh. I have an idea.

“Daisy,” I interrupt mid-holler. “Do you like candy?”

“Yeeeeees.”

I inquire of the registered nurse, “Does Daisy have diet restrictions? Is she diabetic?”

“No, she has a regular diet, but the snack cart is coming around soon. She’d be better off to have the muffin.”

I roll my eyes and look back at Daisy. “How old are you Daisy?”

“I’m 87,” she answers proudly.

I shrug. “Kinda sounds like she’s of age. Come on Daisy, we’re going for candy.” The nurse just shakes her head.

I wheel a victorious Daisy onto the elevator in our search of our Holy Grail. On the first floor it’s quieter and so is Daisy. I position her chair in front of the vending machine so she can get a good look at the selection.

“I have a pocketful of change, Daisy; pick what you’d like.”

She scans the forbidden fruit hidden behind the glass and then points an arthritic finger at her selection.

“You want the peanut butter cups?” I ask.

Her eyes light up and she responds, “Oh yes, please!”

She watches as I put the coins, one by one, into the machine. Her face lights up as her treat drops down from its slot.

With peanut butter cups in hand, I push her wheelchair out onto the patio.

“Let’s blow the dust off, Daisy!” She makes no protest, which is a first. Normally, she’d holler bloody murder if you tried to take her out of the building. Progress.

I find a spot for us at a table with a cheerful yellow umbrella. Curiously, she watches me unwrap the peanut butter cup and leans forward in anticipation.

I hand her the treat and caution her to take small bites.

“Slowly, Daisy!” but she gobbles it down in two seconds.

Noisily licking her fingers, she watches me savour my cup. “Wanna share the last one?” I ask as I fold up the paper wrapper.

“Yes please.” Her eyes widen as she eagerly awaits the sugary treat.

I try to break it into even halves, but I end up with the smaller of the two pieces. Oh well. This time she inhales it in one bite. As if a moment of happiness can be snatched from her hand, she has lost her ability to delay gratification. She’s become a product of her environment. A product that I’m sure Daisy would despise if she could even recognize it.

This is something I’ve given much thought to lately in my job, as I wade through the crowded hallways, human train wrecks blocking my passage at every turn. Is this how any of these people envisioned their lives? Retired teachers, engineers, homemakers staring numbly at one another or defiantly wheeling into your path for no other reason than for you to acknowledge them.

“I was somebody important once, you know,” is spoken in a stare.

“I raised five children on my own. I kept them fed and clothed without anyone’s help,” a widow’s eyes scream in indignation.

“Just love me.” Is buried in Daisy’s “pleeeeease.”

So I do. I love on, and acknowledge Daisy and all the others who are struggling along with me, for meaning and purpose in our fragile lives. To be seen and known validates our existence. It makes the statement, “I see you. I honour your life.”

I lean back in my chair and watch Daisy take in her surroundings. Faded blue eyes squint as she looks up at a perfect blue summer sky. Her white hair that reminds me of a dandelion gone to seed, is being gently tousled in the breeze but it doesn’t bother her. She’s quiet. I sit across from her feeling the warm sun on my face and I let out a sigh. This is glorious. I’m not at my desk doing my actual job right now, but I’m doing what matters – at least to Daisy.

Maybe I’m a slow learner or maybe it’s because I’m older than 50 – closer to the age of those living in long-term care – but I’ve finally figured out that I don’t want to be part of creating policies and procedures. I want to be part of creating joy and savouring memories. It’s simply not enough to help my residents maintain the last vestiges of independence. While this is what I’m paid to do as a restorative care co-ordinator, and I recognize that it does have its place, I am getting less and less satisfaction from it as I watch other things such as provincial standards and quality indicators constructed by people void of any emotional investment, take first place. Truly, what profit is it to gain the whole world, but lose your own soul?

There’s a book by Jonas Jonasson that tells a story of an elderly man who, on the eve of his 100th birthday, decides that the prospect of spending another year in a nursing home is untenable. He escapes and the story that ensues tells of one ridiculous adventure after another. While some critics found the story to be unbelievable and too far-fetched, I found it to be simply enchanting. If I had been written into the story, I would have been his accomplice – the one helping him bust out of the nursing home.

While I may not be in a position to help residents permanently bust out of long-term care, I can provide a temporary escape. And where does the restorative piece fit in? Easy. I am restoring fun, hope and a sense of dignity. Oh please, let there be dignity.

The broken lens of BPSD:
Why we need to rethink the way we label the behaviour of people who live with Alzheimer’s disease 

by Susan Macaulay, November  2017

 

This article was published in the Journal of the American Medical Directors’ Association (JAMDA) on November 13, 2017

Problem: Assessing and reporting the behaviour of people living with dementia (PLWD) through the lens of the currently relied-on Behavioural and Psychological Symptoms of Dementia (BPSD) is problematic. Using the BPSD as an assessment tool can rob PLWD in long-term care facilities (LTCFs) and LTCF staff of their collective human rights and their quality of life, as well as their emotional well-being and dignity.

Significance of the problem: The problem of judging the behaviour of PLWD through the artificial construct of BPSD is pervasive, persistent and systemic.[1] Hundreds of thousands of PLWD and their care partners are currently negatively impacted by the inaccurate perceptions that result from seeing behaviour through the BPSD lens. Without a massive paradigm shift, this problem will only worsen, as the number of PLWD is projected to rapidly increase in the coming years.

Discussion: I will illustrate the gravity of this problem with one qualitative case study (my mother) and the results of quantitative research conducted by myself for this purpose, which together tell a compelling story that demands immediate remedial action.

In the summer of 2013, I initiated legal proceedings to gain control of my mother’s care from another family member. In the lead-up to the court hearing, the long-term care facility in which my mother resided produced nine months’ worth of nurses’ notes as proof that my mother needed antipsychotic drugs to control her behaviours,which, they said, were BPSD resulting from the progression of her Alzheimer’s disease.

To read the complete article go to:

HTTP://MYALZHEIMERSSTORY.COM/2017/11/15/THE-BROKEN-LENS-OF-BPSD-WHY-WE-NEED-TO-RETHINK-THE-WAY-WE-LABEL-THE-BEHAVIOUR-OF-PEOPLE-WHO-LIVE-WITH-ALZHEIMERS-DISEASE/

Caring for our skin:
A must at any age

Rebecca Leigh of Simply Natural, www.simplynatural.ca
https://www.facebook.com/simplynatural.holisticskincare

 

Note from Lise: I first met Rebecca and family at a weekend vegan festival in the Glebe over 10 years ago. At the time, my problem with rosacea was giving me cause for great concern, because none of the numerous over-the-counter facial products I tried since my 30s ever worked on me, and any prescribed remedies only made things worse. Although I was skeptical about trying the Simply Natural blemish formula when Rebecca recommended it to me, my face has never looked better. No more outbreaks- to this day – so why mess with a good thing!

 

The largest organ in the human body is the skin. Taking care of it is essential to our health and beauty. Treating the skin to natural, organic products is one of the best ways to help skin heal and repair itself. After the age of 25, the cell turnover process begins to slow down, resulting in more slackness, less elasticity and natural collagen loss as we age. The good news is that by taking care of our skin, we can help our body fight the natural signs of aging. Products made with vitamins and minerals and natural collagen and elasticity properties can help the skin repair itself from the inside out.

Caring for our skin starts at night, by getting a good night’s sleep. The skin replaces itself most actively between the hours of midnight and 4 a.m.  Use of a moisturizer with ingredients that promote the growth of collagen and elastin will help this process. The other things that will help keep our skin young and healthy are a daily cleansing and weekly repair regime:

The Daily Cleansing: Cleanse tone and moisturize is a daily ritual and should be done at the same time as we brush our teeth (morning and night).

The Weekly Repair Regime added to The Daily Cleansing, is a 2-minute massage with a non-abrasive facial scrub including exfoliating (by removing the excess build-up of dead skin cells, you help generate new healthy skin cells to grow, and in turn, the products that are used on our skin will absorb better into the skin), followed by a purifying or hydrating mask. This will deep clean the skin and enhance its repairing action at night time.

How do we choose products?

With a large variety of products available at pharmacies, estheticians, multi-level companies and health food stores, how do we choose? Is the price a good indication of their quality?

One way to find out is to visit your local health food store and ask their consultants to inform you on their selection of products.

Price does not always mean quality. The fancy packaging and resale levels are very costly for these manufacturing companies, so customers end up paying for that as well.

Sensitivities to skincare products occur due to the high levels of preservatives and synthetic fragrances added to commercial products. Studies have shown that preservatives and fragrances are the major causes of skin sensitivities.

Many large cosmetic companies produce 500 thousand or more products at a time, having a shelf life of approximately 3-5 years. Approximately 1% of preservative has to be added for these products to last that long. Synthetic fragrances are added to mask the chemical odor.

In conclusion, do a little research on the products you are planning to use for your precious skin. Once you find what you need, you’ll enjoy those daily cleansing rituals and look forward to the weekly regime.

Since 1985 we have studied the impact of chemicals on our bodies and the environment, and we have not only made it our goal, but it has become our passion to produce clean, gentle, organic, effective products that work with our skin and nature. Only nature’s finest, purest, healing ingredients will be found in Simply Natural products. We have worked through the years to perfect our recipes to treat the skin with the most effective, gentle, organic ingredients, resulting in a healthy, beautiful complexion.

Since the beginning of our skin care journey, we have focused on coming up with skin treatments that are safe to the body and the planet. We believe that less is more, less packaging, less ingredients and less impact on the planet and our skin. By using simple, organic ingredients, the products will not only work better with the skin, but the results will be far more effective because it is working in synchronicity with nature and the skin. Less packaging means reusable glass jars, less expensive for the company, and thus less expensive for the consumer. Less impact on the planet means biodegradable ingredients, and less waste means less landfill. So let’s love the planet and our skin.

Backlash – What can happen to relatives who complain about sub-standard care in long-term care institutions and what to do about it

A report from a caregiver’s point of view
Lise Cloutier-Steele, March 2017

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