After a year spent trying to keep nursing home residents not just alive, but emotionally sound, Peel Region dementia adviser Mary Connell wept as she read the Ontario Long-Term Care Commission’s report on COVID-19.
There was much despair in the 322-page report that detailed the agonizingly slow response of Premier Doug Ford’s government to protect long-term care residents, families and staff, many of whom are now branded by trauma.
But Connell was crying with something akin to hopefulness, maybe even a bit of joy, if that is not forbidden in the time of COVID.
The commissioners, former Associate Chief Justice Frank Marrocco, Angela Coke and Dr. Jack Kitts, wrote extensively about the value of person-centred care as the way to transform a nursing home system ignored for decades by politicians, bureaucrats and the public.
“I can’t believe that this is happening,” said Connell, a registered nurse who implemented the Butterfly Model of care in the five nursing homes operated by the Region of Peel.
“It’s a watershed moment,” said Lisa Levin, CEO of Advantage Ontario. “I can’t think of another major independent report that has been written about emotion-focused care and it’s not just a line buried on page 250.”
In fact, the report’s call to action on transformative models began on page 24. It is worth giving space to each point on that page because the changes recommended are interconnected, one doesn’t work without the other.
“Leaders at every level must put their hearts, as well as their minds, into reimagining the care of the elderly in this province,” the commissioners wrote. “This will require a philosophy of care that is anchored in respect, compassion and kindness for the people who live and work in long-term care.
“There needs to be a transformation toward a person-centred care model, which motivates different behaviours and rewards innovation that leads to better outcomes for residents and staff.
“There will need to be a multi-dimensional approach to this transformation — one that recognizes that these places are at the same time homes, care facilities and workplaces. Long-term-care homes are also part of the broader health-care system and community,” the report said.
“Residents do not lose their rights upon entering a long-term-care home. They have the same rights as everyone else in society, and those rights must be protected and respected. Residents are entitled to receive quality care and deserve to enjoy a quality of life.
“We have to care about the workers in long-term-care homes. Emotionally intelligent leaders are needed to drive an organizational culture change in order to create respectful and inclusive work environments in which all team members are respectful and inclusive work environments in which all team members are valued, and where staff experience high levels of satisfaction and take pride in their work because they are empowered and supported to deliver excellent care.”
And finally: “These principles are at the foundation of what the commission recommends, moving forward, in order to protect residents, loved ones and staff.”
The commissioners clearly listened to hands-on change agents, like Connell, Peel Region’s dementia adviser and Jill Knowlton, formerly of Primacare Living. They testified together on Butterfly-related outcomes from internal data, including less aggression and anxiety, less use of antipsychotic medication and improved worker retention, along with fewer sick days.
Full disclosure, last fall I was asked to testify by the commissioners about the findings of my book, “Happily Ever Older: Revolutionary Approaches to Long-Term Care,” which examined person-centred care models across North America and into Europe. It evolved from a 2018 Star series called The Fix, that documented Peel’s yearlong Butterfly pilot project.
After reading the report, Knowlton, who is now bringing Butterfly to Jarlette Health Services, another small private chain, said, “I can hardly contain myself today.
“On Friday night Mary texted me. We were overwhelmed. This has been such a labour of love. But we also dealt with the eye rolling, being referred to as flakes and brushed off. Yet we stayed with the cause and began rallying others.”
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The reality is, many of these ideas have been practised successfully for years. For traditionalists here in Ontario, it was easier to hold on to the status quo, the rigidly scheduled dining hours, documentation of meals and mood, and the focus on tasks, not people.
Skepticism is good, but refusal to acknowledge that individual’s emotional health is impacted by the operation of a nursing home, is ageism. People don’t lose their humanity just because they grow old.
As Advantage Ontario’s Levin said, the commission’s embrace of person-centred care “is a natural evolution of what society is experiencing, people are opening up about the importance of mental health. To me, it’s a natural evolution that these principles be embedded in the Long-Term Care Act.”
Organizations like the Pioneer Network in the U.S. have pushed ideas like these for decades. So has Suellen Beatty, CEO of Saskatoon’s Sherbrooke Community Centre. It practises the Eden Alternative philosophy that focuses on the elimination of loneliness, boredom and helplessness, all of which are entrenched in traditional homes.
Beatty said she and her leadership team began with Eden training that taught them to “love your workers.” What follows is simple: If staff are happy, the residents will be happy.
After a pandemic that destroyed the emotional well-being of many workers, it makes sense to give jobs that make staff feel as if they are an important part of the care team, with autonomy to make decisions about the emotional well-being of people in their care. That is how homes attract and keep staff.
The report also spoke about the impact of the home’s construction, quoting Dr. Diana Anderson, a U.S. geriatrician and architect, who spoke about the “importance of design and the built environment as an element of care.” A recent article in the Journal of American Medical Directors Association found that “non-traditional small house nursing homes” in the U.S. had fewer COVID infections and deaths.
Most small households have 10 or fewer residents, like those in the Green House Project or Sherbrooke Community Centre. There is a kitchen in each household, laundry machines and a living room, with staff who are dedicated to a specific household. It offers a familiarity that is comforting.
On Saturday, John Callaghan, co-lead counsel for the commission, said the report highlighted person-centred care because the commission was “charged with the responsibility of making sure there wasn’t a repeat (of COVID in homes.)
“As the report indicates, some of these smaller homes and the homes that apply these philosophies seem to have done very well,” Callaghan said. “It would seem to me to be imprudent not to identify this and not to applaud the innovators in the field.”
Many necessary recommendations emerged from this report. It spoke about options for a good life in the community, including NORCS — naturally occurring retirement communities in apartments or condos, where people live independently but have built-in social ties and support.
Some ideas were not new. Long-term care does need more staff, specific rules for long-term-care doctors and rights for essential family caregivers to be inside the homes, with loved ones.
These are all important. But without innovative philosophies, none will upturn the old ways.
Without a legislated and funded embrace of progressive models of care, as the commission recommended, Ontario nursing home residents, including the future seniors, will live in facilities, not homes.
A veteran politician once said change is a slow process that requires “planting a seed” in the minds of bureaucrats so eventually those ideas no longer sound radical, even if they never were.
Now it is up to the Ford government to embrace homes with vitality, or hold tight to old institutions.
Moira Welsh is a Toronto-based investigative reporter for the Star. Follow her on Twitter: @moirawelsh
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