As the Ontario government opens long-term-care legislation for the first time in more than a decade, the province’s not-for-profit nursing homes say the entire system is on the “brink of collapse.”
Citing staff exhaustion from COVID-19 along with a “chronic lack of resources and a byzantine regulatory structure,” Advantage Ontario — the association that represents non-profit, municipal and charitable homes — says the province must reform the law so workers can focus on residents’ mental health.
If the government eliminates the old, institutional-style of care, residents could enjoy their final years pursuing individual interests such as painting or gardening with the freedom to eat and sleep on their schedule — not the rigid times dictated by legislation, said Lisa Levin, Advantage Ontario CEO. Levin wants the new law to support “emotion-focused care” that puts resident needs first.
“Outcomes such as laughter, joy, and fun are crucial to anyone’s life, and yet they are not prioritized at all in the Ministry’s regime,” the association wrote in its proposed amendments to the 2007 Long-Term Care Homes Act.
The Act’s current regulations do little to improve quality of life. Inspectors can cite a home for the temperature of mashed potatoes, but there is nothing to uphold a resident’s right of friendship or the freedom to choose how to spend their day.
So far, there are signs that Premier Doug Ford’s government will stick with a mostly traditional approach to long-term care — at least from its embrace of the 32-bed, institutional-style units in the big new nursing homes on hospital grounds. Some details of the government’s plans are expected in Monday’s throne speech.
The Ministry of Long-Term Care is opening the Act this fall, with the expectation that it will add a requirement for an average of four hours of daily care by 2024-25 (which will require more staff) and tougher enforcement rules, although it already has the power to fine and take control of troubled homes if it chooses.
A government spokesperson said it “values the input of groups like Advantage Ontario” and will act on “advice from the Long-Term Care Commission, the Auditor General, and Ontarians who’ve seen the challenges firsthand.”
Seniors advocate Laura Tamblyn Watts welcomed new legislation with a warning.
“These changes in staffing hours and enforcement are a step in the right direction of having a more human focus, where care needs can be met adequately,” said Tamblyn Watts, CEO of CanAge, a national seniors advocacy organization. “However, unless we fundamentally transform the philosophy of care, this is taking us in the wrong direction.
“We need emotion-focused transformative care, not propping up a medical model of long-term care which is keeping seniors as patients rather than supporting them as whole humans living a vibrant life in their last years.”
It’s not just Tamblyn Watts or Advantage Ontario calling for sweeping change.
The Ontario Long-Term Care Association, representing for-profit and non-profit homes, made the emotional wellbeing of residents and workers the foundation of its recommendations, as did the Ontario Long-Term Care Commission into COVID-19 in its final report last April. During the pandemic, public criticism focused on for-profit operators’ COVID cases and dividend payments to shareholders.
“Transformative change is needed urgently,” said the OLTCA submission, “and will require bold, visionary leadership at all levels.”
The OLTCA is calling on the government to put “residents, their families, and caregivers at the centre of care models through focusing on resident experience, quality of life, and holistic care — medical, emotional, social, and spiritual.”
Since 2018, the Star has written about the importance of care that elevates the individual needs of vulnerable nursing home residents, many of whom have cognitive decline and serious health conditions.
After a Star investigation called “The Fix” documented the “Butterfly Model” transformation of a dementia household in a nursing home operated by the Region of Peel, Toronto City Council voted unanimously to begin its own approach in 10 city-operated homes, starting with one pilot project. Waterloo Region’s Sunnyside Long-Term Care Home and the Ottawa non-profit Glebe Centre both announced plans for Butterfly. COVID delayed their start dates, but the training has begun again. And longtime Butterfly advocate Jill Knowlton is bringing the program to Jarlette Health Services.
Homes that enable workers to spend time with residents, instead of rushing from task to task, report greater work satisfaction and job retention — helpful in an industry struggling with an exodus of health-care staff, although the ministry said it is funding “accelerated” training for new frontline workers.
“Most days I don’t recognize the workers on my shift,” said a nurse in a non-profit home. “They’re all agency staff. I do my best, but they don’t know anything about the residents who live here.”
Levin said homes need emotionally intelligent workers. But staff “who are truly caring and empathetic” are not going to last in jobs that allow just a few minutes to “get someone up and ready and jam their clothes on and brush their teeth quickly.
“Emotion-focused care is the way we need to care for our seniors,” Levin said. “We have seen evidence of this globally with the Eden Alternative, the Butterfly Model, the Green House Project, that to care for humans, especially when they have cognitive decline, you need to care not just for their physiological needs, you need to care for their emotional needs.”
While unique in training or home design, these approaches all place the fulfilment of residents — and staff — before the completion of tasks.
“Happy workers mean happy residents,” leaders say.
Levin said the industry needs a different approach: offering meaningful jobs to attract new workers.
A veteran hairstylist at a downtown Toronto salon recently trained for a health-care role and applied to a Peel-operated nursing home that uses the Butterfly Model, which focuses on the feelings of people with cognitive decline.
“As a stylist, he is emotionally intelligent and now he is bringing that to our residents,” said Mary Connell, Peel’s dementia adviser. “Some days he has people up dancing and sometimes, if a person is feeling down, he will sit and just be with them.”
Among glimmers of change there is much that needs fixing.
Air-conditioned bedrooms are a luxury. So is emergency hospital care for some residents. Many workers have minimal training and low wages. And oversight comes from inspections that can hold homes accountable for hallway lighting or the post-secondary education of the lead housekeeper but don’t always crack down on abuse.
A few homes, non-profit and for-profit, find ways to offer freedom, but most follow the Act’s traditional timetable. Regulation 79/10, Section 70(6), for instance, states that dinner cannot be served before 5 p.m. It’s one of the “minor” but limiting rules that Advantage Ontario and the OLTCA want lifted without — they said — compromising “accountability” on major problems.
“My father used to love to eat dinner at four o’clock in the afternoon but when he went into long-term care — he couldn’t,” said Donna Duncan, CEO of the OLTCA.
“However well-intentioned, Ontario has a rigid ‘cookie cutter’ legislative and funding model that wasn’t designed for emotion-focused care or the changing clinical needs of our increasingly complex and diverse residents,” Duncan said.
“The bottom line,” said Levin, “is that these (residents) are vulnerable and need care. These are not nuclear facilities where you have a procedure and protocol that is the same no matter what, every time. You cannot regulate every aspect of care for humans. You need some element of judgment.”
It remains to be seen if the government will meet demands for full-on change. Its adherence to tradition continues, at least in the architectural design of the new “Accelerated Build Pilot Program” nursing homes on hospital grounds.
Ford speaks glowingly of these large homes, with private and semi-private bedrooms, that are expected to be up and running quickly. Trillium Health Partners in Mississauga will have two homes with 632 residents, while Humber River Hospital in Toronto and Lakeridge Health in Ajax will each have one home with 320 residents.
But the rapid-build design follows the old style with mostly 32-person units at a time when studies show that smaller households — such as those used by the Green House Project — are better for infection prevention and control, as well as resident health, social connection and staff job satisfaction.
That doesn’t mean new homes built with 1999 design standards can’t provide good care but there is growing evidence that design can be calming — especially among those with dementia. In other words, the right design can help homes operate more effectively.
In 2020, Alzheimer’s Disease International released a global report that found nursing homes, hospitals and public spaces were 30 years behind in design standards for an aging population. It called for “human scale” designs to reduce the overstimulation of large spaces, because people feel safe in a familiar environment.
Still, as part of its $1.75-billion redevelopment and building fund, the government is approving ideas that are newer to Ontario. Since June 2018 the ministry said it has approved 85 “campus of care” communities (58 are non-profit and municipal operators) that offer a blend of housing from independent to assisted living and long-term care.
In Peterborough, Trent University is partnering with long-term-care company, peopleCare, to build a not-for-profit home for 224 people as part of an “intergenerational” seniors village on university land, with a focus on teaching and research. PeopleCare spokesperson Sheena Campbell said the home will reflect the local culture, including the wishes of nearby Indigenous communities.
Eighteen months after COVID-19 hit Canada, the topic of aging is more emotionally charged than ever.
“Long-term care needs to be completely rebuilt from the ground up, and governments have to realize that large facilities that ‘warehouse’ older adults are not what they deserve,” said Bill VanGorder, chief operating officer of CARP.
By 2030, one in four Canadians will be 65 or older. Surveys show that most want to age at home, although that would require major improvements to government-funded home care.
The person-centred philosophy is needed across the health-care sector, said Dr. George Heckman, the Schlegel Research Chair of Geriatric Medicine at the Schlegel-University of Waterloo Research Institute for Aging.
Heckman said he spends time with patients, no matter where they live, trying to learn their goals for health, life or death. Whether it’s a vibrant 90-year-old woman or a man declining from heart disease, Heckman said the individual must be “part of the conversation, so they are in the driver’s seat.”
In nursing homes, sharing details of those conversations can help workers better understand the people in their care, he said.
“What I notice is that when we approach residents like this, everyone’s quality of work improves,” he said. “And the people I work with, they are part of this conversation … They are far more satisfied. They are a lot more engaged. If a resident dies, we can debrief and they know they’ve done a good job and are not left with a sour taste of ‘what if’ and ‘should I have done something better?’
“The quality of work will improve as well as the quality of life with the resident.”
In its final report, the Long-Term Care Commission into COVID-19 called for government support and money for a “transformation to a person-centred model” (the same concept as “emotion-focused” care). The ministry said it is looking at the commission’s recommendations for “possible” changes to the Act.
The industry’s push to remove what it calls “minor” regulations may be less than popular after a pandemic that exposed the troubled system to the public. Families, residents and workers have spoken, often with fury, of deep trauma, saying many homes have not been held to account.
Tamblyn Watts said those emotions have been elevated by the sector’s underfunding, spotty inspections and lack of staff or ill-trained staff. That anger spills onto social media, where people console one another or lambaste politicians.
Their grief and rage are important to acknowledge, she said, but the promise of harsher rules alone won’t make the system more humane — although for a provincial government heading into a spring election, it might win points.
“If you are going to make a political manoeuvre to look good to people who are perhaps not thinking about these issues at a really deep level, then more inspections, more enforcement, more tick-box minutia might seem like a good idea.”