‘We can’t put our residents through this again’
The pandemic has created an awakening about the importance of emotion-focused care for seniors
A fashionista nursing-home resident who once revelled in jewelry and luxury fabric now sits and stares out the window, her face blank.
A nurse weeps because a resident’s pressure ulcer is growing deeper as staff, working through the pandemic, struggle to give the proper time-consuming care.
A man refuses to eat after weeks in isolation, away from bustling dining room meals.
These are stories behind the data released by Peel Region’s Sheridan Villa, numbers tallied during the lockdown that show seniors isolated by COVID-19 restrictions are increasingly depressed, and suffering from falls, unexpected weight loss and pressure ulcers.
The monthly reporting of long-term care “indicators,” sent to the Canadian Institute for Health Information (CIHI), do not show extreme declines, but Sheridan managers say their data is trending negatively, exposing the simple fact that people need each other.
Ontario’s COVID-19 restrictions — with strong limits on physical contact — blocked interactions between residents, families and staff, said Sylvonne Milligan, Sheridan’s specialist in the Resident Assessment Instrument (RAI) data collection tool.
All nursing homes use the government-mandated tool. Sheridan released its internal data to the Star, saying it proves change is needed or residents will continue to decline.
“I’d like to think that our folks are more used to us being around, doing things with them,” Milligan said of the relationship between Sheridan residents and staff. “Now, you can’t even hold someone’s hand without a glove. I think that’s a really big piece of (the decline). As human beings, we crave connection.”
The pandemic has created an awakening about seniors’ care, with a focus on the importance of emotional connections.
It also inspired leaders within the industry to speak openly about the need for emotion-focused care, placing individual fulfilment above the traditional system of schedules and tasks.
Sheridan Villa, the municipally operated nursing home in Mississauga, already uses programs that focus on residents’ emotions and personal interests. Its staff met last week to discuss ways to improve care under COVID restrictions in case a second wave of the virus arrives.
“We can’t put our residents through this again,” one nurse said.
In February, the month before the lockdown, 12.5 per cent of Sheridan Villa’s 142 residents had experienced a “worsened depressive mood.” That number increased to 15 per cent in March, 15.7 per cent in April and 17.5 per cent in May. The most recent provincial average for depression was 22.3 per cent, according to Sheridan documents. During the lockdown in March, April and May, Sheridan had slight increases in the number of residents with unexpected weight loss, pressure ulcers and falls. Those changes may look minimal on a spreadsheet, but staff say they know the people behind the data, calling the increase of a percentage point or two deeply personal.
Data for so-called “behaviours” noted a 6.4 per cent increase from February (when it was at 8.6 per cent) to 15 per cent in May. The most recent provincial average for “behaviours” was 12.6 per cent, according to Sheridan. Behaviours is a traditional nursinghome term used to describe people, mostly with dementia, who walk constantly, shout or sometimes act aggressively. Advocates say these are reactions to a life that is sterile.
Milligan said the behavioural changes are likely the result of resident confusion after provincial rules required isolation in rooms. She said many, particularly those with cognitive decline, feel rejected because they can no longer hug staff or hold hands.
They are also feeling a profound sense of abandonment because many do not understand why their families no longer visit, she said. The Ontario government banned family visits in midMarch when the virus began its surge through homes.
On June 18, the Ministry of Long-Term Care began allowing one family member one outdoor visit each week. Unlike staff, who do not need regular COVID testing, families must test negative for COVID every two weeks.
The demand for swabbing is onerous, particularly for fragile older spouses.
It took a deadly virus, but the long-term-care industry is starting to understand the need for transformation that elevates emotion-focused care, said Laura Tamblyn Watts, CEO of CanAge, a seniors’ advocacy group.
“Social isolation syndrome, as we are calling it, is a combination of low mood, loss of physical mobility and a loss of connection with people,” Watts said. “We’ve seen it in Canada and around the world.
“Having homes share the impact of isolation really brings to light how important it is to move to emotion-focused care in long-term-care homes in Canada,” Watts added.
“Only through tracking things like mood, things like social connection, can we take care of the whole person, not just their physical well-being.”
There’s a new willingness in the industry to explore the programs and approaches that offer seniors vibrant lives, she said, not just medical care and meals.
“What we are seeing now is associations and industry in long-term care are really understanding the importance of this model in a new way.”
In traditional homes, where the task-focused system rules, isolation is pervasive. If there is a chance for real change, industry insiders say the government must ensure that homes provide individualized care that offers purpose and activities that connect with each person — not the typical activities, like sitting in a circle tossing balls to each other.
“I look at long-term care as being a pyramid and at the top of it is the resident,” said Chris Brockington, a 20-year consultant in the nursing and retirement home industry.
“With every decision, it has to be framed with, ‘Will this be good for the resident?’ Staff has to say, ‘If I’m in their shoes, is this something I would like for my mother or father?’ It’s the simple understanding of, how do we build a culture that cares?
“To me that is the starting point. I think we can get on that really, really quick. Maybe we need to start thinking of (residents) as the customer. They are paying for the service. What do they get for it? Do they deserve to be awakened at 7 o’clock when they really don’t want to be awakened at 7 a.m.?”
Brockington consults with for-profit and not-for-profit homes along with service providers such as pharmaceutical or medical device companies. After the public outrage over flaws exposed by the pandemic, he believes many operators are willing to change the old culture that put the needs of residents behind efficiencies and scheduling.
“They are going to be open to anything right now because they know the onslaught that is coming toward them,” he said. “Culture in long-term care for the most part is not great. We do need to move it away from, say, an ivory-tower approach of ‘We know best for your home.’ ”
Ask Doris Grinspun, CEO of the Registered Nurses’ Association of Ontario about Premier Doug Ford’s promise for transformation and she’ll say there’s a good chance he’ll bring legitimate change.
“I believe the premier takes this to heart,” Grinspun said. “And this is indeed a matter that we need to solve with heart, not only with the numbers, the budget. And we need to put the budget where the heart is.”
Grinspun is pushing the government to commit to a minimum of four hours of direct nursing and personal care for each resident, each day. Currently, the RNAO says the average resident gets roughly 2.7 hours of direct daily care.
The estimated cost of the additional staffing, a mix of registered nurses, registered practical nurses and personal support workers, is $1.75 billion, according to RNAO reports. In its June 2020 report on staffing, the RNAO said the additional cost to bring staffing up to a new standard is “truly an investment, not an expenditure, as it will save us from enormous costs in the future.” It also said the cost “is not large relative to the $63.8 billion health budget.”
The pandemic exposed the staffing shortage in long-term care although the problems have existed for years, with residents sitting in filthy briefs, going hungry or left alone for hours.
It was the report written by the Canadian Armed Forces, whose staff worked in homes with the most COVID infections, that got Ford’s attention.
Grinspun wants the government to commit to the staffing formula, saying it would help residents get the time and individual attention they need. She doesn’t believe the industry’s problems need to be studied again. The upcoming commission into long-term care, promised to begin in July, will produce yet another report, she said. Her staff recently counted 35 long-term-care reports in the last 20 years. None led to lasting change.
“Give us a plan,” she said. “Give us a two-year plan. But don’t put this on an election platform.”
The industry has never had the hiring power or the cachet of hospitals even though nursing home residents share the same conditions as acute care hospital patients, said Brockington, the consultant.
“Part of it is, we are not portraying the sector as being a thought leader,” he said.
“We’ve been left behind for so many years in terms of innovation.
“With innovation, you think of acute care, not long-term care. So, we are playing catch up, for years, trying to bring in new ideas. Because it is slow, the (nursing home) culture is ‘make my life easy.’
“We need to make it a place where our educational system is actually promoting it as innovative, as fair, as doing something that is thought-provoking, that is compassionate.”
Susan Veenstra is a registered nurse who spent two decades in long-term care, working in administrator and director of care roles. She now works as a consultant, often with Brockington’s company, In Initiatives Inc.
Veenstra agrees with the assessment that there’s a culture of fear in many homes, with top-down decisions leaving staff and families afraid to speak up.
“The ones who have done the best are probably with the most open communication,” she said.
The industry is ready for a shakeup, eradicating the old task-focused system and replacing it with individualized care that allows front-line workers and residents to engage, she said. But that won’t happen unless the upcoming commission into long-term care brings in new people with fresh ideas.
“At the end of the day, they don’t need to have the same old, same old, sitting at the table thinking that they are going to make things better if the same people are at the table.
“It’s like the definition of insanity: doing the same thing every time and expecting a different result.”
For Derek Hoare, who left a 32-year career in private and not-for-profit long-term care management to run a restaurant on Prince Edward Island, the instrument of change is always the home’s leader.
“I’ve given this a lot of thought,” Hoare said. “When I look at the homes on the list of the ones that had greater (COVID) fatalities than the other ones, I would hazard a guess that the homes that did better had a much stronger employeremployee relationship and a much more common goal relationship where they worked toward the common good and developed programs for residents collaboratively.
“That is what I’ve seen, and that is what I have found has worked. It is not autocratic leadership but one that has involvement.”
Most long-term-care managers don’t call attention to negative outcomes, but Sheridan Villa administrator Marianne Klein said the declines in her home’s data, particularly in “worsening mood” category, prove that homes need creative approaches moving forward.
Klein said Sheridan’s emotion-focused program, Meaningful Care Matters (formerly Butterfly), gave staff an edge when, for example, they tried to get a man, declining with COVID, to eat. He had been refusing food and drink.
His registered practical nurse, Darryl Hawtin, knew the man well and remembered that he liked Polish sausage. Hawtin spoke to Sheridan’s dietitian who bought a package of Polish sausages at the grocery store. Culinary staff cooked the meat the next day.
The resident ate the sausage and later asked for ice cream. He’s been eating well ever since, Klein said.
“If we know the people we are caring about, if we understand them, what their needs are and what their strengths and limitations are, we are able to provide care that meets their needs,” Klein said.
“If we don’t do that, we treat people like a piece of data and that’s not what this is all about.”