As pressures mount on home care in Canada, experts look abroad for solutions

Black Art White Coat26:30The problem with home care (Part 1)

Kirsten and David MacDonald’s life changed forever last year when Kirsten was diagnosed with amyotrophic lateral sclerosis (ALS) and David became her full-time carer.

“A year and a half ago, Kirsten could run 5km, no problem. And so in a year and a half now, she has absolutely no use for her feet, arms and legs. And her voice is going. She’s about a week away from being non-verbal,” David said. White Coat, Black Art‘s Dr. Brian Goldman during a visit to their home in Ontario’s Muskoka region in August.

David, 61, has suspended his activity. Now he spends 14 hours a day caring for Kirsten, who is 55, in addition to caring for their six-year-old child.

One hope for the MacDonalds is home care, provided by provincially paid occupational therapists and personal support workers (PSWs).

A central agency has assessed their needs and approved them for home help, but the actual hours they get depend on staff availability.

The MacDonalds currently receive eight hours of PSW home care per week, half of what they were approved for.

“I think it’s incredibly awful,” Kirsten said. “I mean, I’m in a great position with a caring husband, but I can’t imagine what other people are going through.”

Dr. Samir Sinha says Denmark spends about twice as much on long-term care services as Canada. (Tiffany Foxcroft/CBC)

Several patients, home care providers and medical experts who spoke with White Coat, Black Art everyone agrees that we must rethink home care in Canada.

Otherwise, they warn, the current shortcomings will be felt more intensely and add further strain on already massively stressed ERs, hospitals and long-term care homes.

“Everything we have in our provinces and territories is funded based on maybe politics and necessity, instead of really looking at home care as an essential part of our system,” said the Dr. Samir Sinha, director of geriatrics at Sinai Health and the University Health Network in Toronto, who is developing a national seniors strategy for the National Institute on Aging.

Black Art White Coat26:29The cure for home care

The waiting list is growing

According to the Canadian Medical Association, nearly one million Canadians today rely on some form of home care. Half a million more people are expected to need it by the end of the decade. And by 2031, overall home care costs are expected to double.

Caryn Farnsworth, an occupational therapist based in Huntsville, Ont., helps the MacDonalds as needed.

Kirsten MacDonald needs and qualifies for many more hours than home care can currently provide. David put his business on hold to become his full-time carer. (Brian Goldman/CBC)

She does her best to help the situation in the few hours she is able to be there. During her visit with Dr. Goldman present, she asks Kirsten how many “good days” she’s had recently – a lot of them, Kirsten replies.

She helps David carry a brand new dresser, which she dubs “the Cadillac of dressers”, down to the ground floor of their house.

Like any other visit, it ends before long and she is on her way to visit another of her more than 80 clients scattered throughout the province’s Muskoka region.

Farnsworth spends about three to five hours a day – half of her work week – traveling between clients’ homes. The waiting list to see her can go up to a year.

Occupational therapist Caryn Farnsworth, left, and student Meghan Lees. Farnsworth spends about half of his working days traveling from client to client in the Muskoka region of Ontario. (Brian Goldman/CBC)

As one of only two occupational therapists in her agency serving the area, Farnsworth’s energy and resources are stretched thin. Rising gas prices have only increased the pressure on its spending.

“It’s extremely frustrating. I think home care is a critical part of our medical system that just doesn’t seem to be getting the funding and care that community members need,” Farnsworth said.

“I really want to stay at home”

Another Farnsworth client, Hali Camick, 52, lives in Kilworthy, Ont., a hamlet northeast of Sparrow Lake. She suffers from severe multiple sclerosis and an episode of COVID-19 made matters worse.

As a Mohawk woman from the Wahta First Nation, she is eligible for non-insured health benefits for First Nations and Inuit. But it’s not enough.

Farnsworth, left, helps client Hali Camick, center, alongside personal support worker Colleen Western at Camick’s home in Kilworthy, Ont. (Brian Goldman/CBC)

“I really want to stay home. I have a son with special needs, and he’s with me too. Mom moved in a year ago, so she’s not getting any younger either,” she said . “Any help I can get would be great.”

“These stories break my heart because I hear them all the time,” Sinha said.

He fears that as people spend more and more time on waiting lists, their families could become exhausted caring for loved ones when they don’t have help from providers like Farnsworth and personal support workers – which is most of the time.

The Dutch “Buurtzorg”

Zayna Khayat, a futurist and adjunct professor at the University of Toronto’s Rotman School of Management, recently authored a pilot of a Canadian model of home care inspired by Buurtzorg, the name of both a system and a a non-profit organization in the Netherlands. .

The word Buurtzorg translates to “neighborhood model”. In Khayat’s pilot project, a patient’s care plan would be decided by family members and their nurse, rather than a central government agency.

Zayna Khayat is a futurist and adjunct professor at the University of Toronto’s Rotman School of Management in the area of ​​health sector strategy. (Sarah Bodri)

Khayat says Ontario officials were on board, but interest and funding plummeted as home care visits dropped early in the COVID-19 pandemic. In the Netherlands, the Buurtzorg is nimble enough to give a patient more time when they need help the most, and reduce it when not needed, Khayat explained.

“They then receive a budget based on the needs of the patient…As long as they achieve the results, they decide how they want to orchestrate and use the budget,” she said.

Eventually, she hopes, “it’s going to be very unusual to go to these places called clinics and hospitals to get treatment, just like you don’t. [often] go to the bank to get cash.”

Khayat says the overall cost of the Buurtzorg model may cost more than a traditional home care model, but argues it produces better outcomes.

In his view, this is more cost-effective because it eliminates management-level expenses in favor of paying higher salaries to direct home care providers themselves.

The Danish model

Sinha said equal pay for healthcare providers, which is offered in Denmark, could provide part of the solution to this problem.

“It doesn’t matter where you work — as a personal support worker, as a nurse — number one, you actually get paid a respectful salary, which is important,” he explained.

Victor Stratton with his daughter Cheryl Stratton. Victor has Parkinson’s disease and received only occasional visits from home care providers as he spent months on a waiting list for a long-term care home. (Brian Goldman/CBC)

In the 1980s, Denmark shifted support from building new retirement homes to investing in home care. CBC Marketplace traveled to Denmark with Sinha earlier this year for a closer look at their healthcare model.

Denmark, Sinha explains, spends about twice as much on long-term care services as Canada. About two-thirds of this amount is spent on home care, with the remaining third being spent on nursing home care.

“Canada is the opposite,” he said. “We spend two-thirds of our spending on storing people in homes and only one-third on keeping them in their own homes.”

Cost of care

Following Denmark’s lead, Sinha argues, it would cost Canada less than continuing to build and plan long-term care homes.

“Our own Ministry of Health in Ontario has said that caring for someone in their own home, for example, who is eligible for long-term care, costs them about $100 a day. To care for her in a long-term care home, about $200 a day. And if they’re stuck in the hospital waiting for a long-term care bed, it’s about $750 a day,” he said.

In a statement to CBC Radio, Ontario’s Ministry of Health reiterated previous commitments, including investing $1 billion over three years in home care and the creation of Ontario Health Teams (OHTs). to provide “a new model of integrated care delivery” that includes home and community care. .

David and Kirsten MacDonald do their best to get by. But the costs of that care ran into the thousands of dollars, even with the help of the ALS company – including installing two chair lifts in their home, the aforementioned commode and a mechanized lift that Kirsten has to use, with assistance, to ascend and descend. the dresser.

It’s only a matter of time before David is forced to call 911 and rush Kirsten to the nearest hospital.

Produced by Amina Zafar and Colleen Ross.

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