How Better Building Design Can Help Improve Long-Term Care in Canada

Imagine having to call someone in the middle of the night to take you to a communal washroom or use a commode by your bed with only a thin curtain for privacy. Not because there isn’t a bathroom connected to your room, but
because there isn’t enough room to turn a walker or a wheelchair around in it.

Jill Knowlton, a director of the Ontario Long Term Care Association (OLTCA), told Ontario’s Long-Term Care COVID-19 Commission in a Nov., 2020 presentation that some washrooms have a turning radius of less than a metre and a half. “If you get in,” she testified, “you can’t get out.”

For Dr. Diana Anderson, design is a parameter of care, as important as other determinants of health, such as where you live and what you eat. “We don’t talk about that a lot, but buildings have a huge impact on us,” says Anderson, a Boston-based doctor and architect who calls herself a “dochitect.” “It’s almost akin to a medical intervention. It has that much of an impact on people.”   

If anyone needed proof of that, it was provided by the pandemic. Many of the province’s older long-term care homes were perfect incubators for the tragedies to come: two- and four-person ward-style rooms with less than a metre between beds; poor ventilation; no centralized heating or air conditioning; narrow hallways with barely enough room to transport large medical equipment; limited access to the outdoors; minimal storage space for both residents and staff; large communal dining areas; and tiny bathrooms, shared by as many as eight residents, which were often used as hand-washing areas for staff.

With a waiting list of about 38,000 people, Ontario’s LTC homes had no space to isolate infected people; sick and well had no option but to bunk together. “It’s infection control and prevention 101,” says Dr. Nathan Stall, a staff geriatrician with Sinai Health in Toronto and one of the great defenders of the elderly, particularly during the pandemic. “The more people you crowd into the room, the more likely you are to infect more people if the virus gets in. That we showed early on.”

Since the virus hit Canada in January 2020, it has claimed more than 26,000 lives. Between March 1, 2020 and Feb. 15, 2021, according to a report from the Canadian Institute of Health Information, outbreaks tore through more than 2,500 seniors’ homes across the country. Nearly 30 staff and more than 14,000 residents died, which represents more than two-thirds of Canada’s total COVID casualties. In Ontario, as of June 24, 2021, 4,501 LTC residents have died – 50 per cent of the province’s 9,099 total deaths — and there have been 31,810 cases in 943 of 1,396 nursing and retirement homes.

 

Tea Parties and Cocktail Hour

 

How did we get here? Many of Ontario’s LTC homes, constructed during the 1960s (although a handful are more than 100 years old), were designed more as retirement homes for seniors who didn’t all need nursing care. In those days, more residents were independent and, in many cases, still socially active. For one thing, they were younger than their counterparts today. A child born in the early 1900s might have lived 50 years; by the mid-1940s that had increased to about 68 years for women and 65 for men. Now it’s more like 84 and 80 and, by the 2011 Canadian census, centenarians were the second fastest-growing age group in the country.

“I’ve heard stories of not enough parking for all of their cars,” says Jan Legeros, a director of the Canadian Association of Long-Term Care and executive director of the Long-Term and Continuing Care Association of Manitoba. “Some were snowbirds. Some were walking to the Legion every day and having libations with their friends. It was a very, very different kind of scenario.” Donna Duncan, CEO of the OLTCA, remembers her grandmother’s experience in a nursing home during the 1980s. “People would come and go,” she says. “My grandmother was hosting tea parties and entertaining everybody.”

Now, the vast majority of residents in long-term care have some form of dementia or cognitive impairment. Half are more than 85, and many are physically frail and have other chronic ailments. “I’m not sure I’ve ever had anyone want to be in a nursing home or ask to go there or really enjoy it,” says Stall.

The OLTCA represents 626 LTC homes in Ontario, housing 115,000 residents. More than 32,000 live in the older homes; almost a third live in three- and four-person rooms. The homes are owned by municipalities (16 per cent), not-for-profit organizations (27 per cent) and for-profit corporations (57 per cent). The majority of the oldest homes, many of which were owned by municipalities and not-for-profits, predate 1972 design guidelines and were either closed or updated in 2000.

In 1998, the Ontario government created a new design manual to make them less institutional and abolish ward-style rooms. But for many reasons — shifting priorities, changes in government, escalating land values and a complex approval process involving multiple levels of government — plans and promises to upgrade older homes have fallen by the wayside. In fact, many applications for redevelopment have been stalled at the approval level, according to Duncan. One company put in 60 applications for 20 homes over the last 20 years and, as of April, had still not received approval for a single one. Indeed, the commission’s final report, released in April, noted “Ontario’s policymakers and leaders failed … to take sufficient action, despite repeated calls for reform.”

“I accept part of the blame for the delay in redeveloping these multi-resident-room homes,” Dr. Bob Bell, who was deputy minister of health for Kathleen Wynne’s Liberal government, wrote in the Toronto Star last November, “since the ministry that I served for four years failed to approve most of the applications for redevelopment, as had the current government prior to COVID-19.” Spurred on by the horrors of the pandemic, Duncan says, Premier Doug Ford’s Conservative government has demonstrated a commitment to move forward with its announcement in March to invest $933 million in 80 new or upgraded long-term care projects. But it’s not nearly enough to solve the problem. “There are still about 20,000 spaces in [older] homes that we need to address,” she adds.

 

$19 Billion and Counting

 

The estimated cost to redevelop the homes to meet the current need is about $19 billion, Dave Santangeli, co-founder of Morrison Park Advisors, told the long-term care commission on March 5, 2021, but with expected trends and demographics, that number could double or triple “quite easily.” During the testimony, lead commissioner Justice Frank Marrocco said: “We’re sitting here dealing with a situation where there’s a 38,000-person waiting list and no reasonable prospect of ever solving that problem … And we’re dealing with a problem that virtually everybody in the province will confront, either because they have a loved one in a long-term care facility, or they’re going to end up there themselves. And they should perhaps think about what they want to go into.”

In 2010, Dalton McGuinty’s Liberal government extended the older homes’ licences to 2025 to allow for upgrades. Whether that’s possible is anyone’s guess. Duncan believes another extension may well be granted, but there are serious roadblocks. For one thing, all LTC homes are self-financed and generally own the land they sit on, including municipally owned residences. Rebuilding or retrofitting to meet the 1998 design guidelines would, in many cases, require buying more property and, in places like Toronto where land values have skyrocketed, that’s untenable for many.

On top of that are new exclusions in insurance policies for infectious diseases from the handful of providers to long-term care facilities. That’s a huge blow, Duncan says, because debt lenders are becoming more reluctant to finance the homes, even advising them to make sure they have money set aside to cover any potential claims. “So essentially, if you’re a non-profit, you may have to fundraise to self-insure before you can actually secure your debt financing,” she adds. “In order to get a mortgage, you’re going to have to demonstrate that you’re sitting on a bunch of money.”

Then there’s the issue of sprinklers, with many older homes partially covered and some with none. As journalist Alex Roslin noted in his July/August 2020 Zoomer story on systemic neglect in long-term care, Canada has the second-worst record of any country in the world for fire deaths in seniors’ home. Even after the deadly fire and needless deaths of 32 residents in Résidence du Havre in L’Isle-Verte, Que., in 2014, many older LTC homes still do not have the proper sprinkler systems in place, and they are prohibitively expensive to add. In Ontario, which has had three inquests and 45 fire-related deaths since 1980, the provincial government mandated sprinklers in most LTC homes, but gave operators as many as 12 years to install them. So while a licence extension may buy the homes some time, Duncan adds, it may not satisfy the fire marshal, insurers and debt financing companies.

And if we’re feeling the impact of the perfect storm with tragic implications for long-term care, another is right behind it. The number of Ontarians over 80, now 677,990, is going to double to more than 1.3 million by 2036. At the same time, aging health-care professionals are retiring, and there is already a shortage of nurses and other health providers. “We’re running out of time,” says Duncan.

 

Home Truth

 

When experts talk about better models of elder care, nearly everyone mentions Denmark. “Canada has emerged as this great underspender on the provision of long-term care,” says Dr. Samir Sinha, director of geriatrics at Sinai Health in Toronto. To provide that care, Canada spends about 1.2 per cent of its GDP, when the average for all 38 member countries of the Organisation for Economic Co-operation and Development is 1.5 per cent and more than twice that in countries like Denmark. 

In 2012, the McGuinty government asked Sinha to reimagine care for the aging population. Before that, the province had come up with its own aging-at-home plan, and there were new investments in the home- and community-care sectors. As far as it went, it was a success, Sinha says, allowing 30,000 people who were eligible for LTC beds to stay in their own homes. “We were actually achieving the Denmark effect.”

Then it stalled. The government focused its energy on alternate level of care patients, people who were waiting to be discharged from hospital, but couldn’t leave until they received some form of government-funded care — which is where Denmark was in the early ’80s. “Denmark started aggressively investing more in their home- and community-care programs,” Sinha says. “And by doing that, they didn’t have to build a single new nursing bed for 20 years.”

Currently, 15 per cent of Ontario’s almost 30,000 acute and critical care beds are occupied by people waiting to go home with help, or to rehab. One day in hospital costs about $730; to care for a person in a nursing home, it’s roughly $200 a day, while home care costs about $103 a day. “Even by our own government standards, it’s clear that home care is actually a viable solution,” says Sinha. “The answers are there in front of us. I think we have the political will to make statements that we will end hallway medicine within a year, but we’re actually not doing what we need to be doing and we’re often throwing good money after bad, resulting in a system that’s not sustainable and a system of care that’s highly problematic.”

In his proposal, Sinha said, instead of committing to build or redevelop 60,000 beds, half of them could be “virtual,” which would save between $6 billion and $8 billion in construction costs alone. Those people could stay in their homes with care from a team comprising a primary caregiver and home-care provider supported by community services agencies such as Meals on Wheels, volunteer visitors and adult day programs, as well as paramedics based in the community. “Frankly, if they did the math the way we did the math, it would make a lot more sense,” says Sinha. “We could actually support a lot more people at home than in nursing homes.”

 

Butterflies and Robots

 

For years, advocates have been calling for smaller, homier places where seniors can be cared for when necessary and otherwise left to live their lives as independently as possible. One of the models that has inspired Anderson, “the dochitect,” was started by Maggie Keswick Jencks and her husband, Charles, in the United Kingdom to improve cancer care. Each of the 27, light-filled Maggie Centres has an original design by renowned architects, like Rem Koolhaas and Frank Gehry, with private and public spaces, plenty of opportunities to step out into nature and a communal kitchen table. “When I give lectures, I refer to a speech given by Charles, where he said he believed architecture may help prolong our lives, and these buildings were integral to help do that,” says Anderson. “A lot of these design principles could be applied to long-term care.”

The Butterfly Model for dementia care is another example of what is called empathic design. In 2019, Henley House in St. Catharines was the first privately run, long-term care home in Ontario to be accredited as a Butterfly home. Inside the larger LTC facility is the Butterfly area, with its small, brightly coloured “neighbourhood” of no more than 25 residents. Staff is assigned to one zone, where they really get to know the residents, even preparing meals and eating together. The smaller areas limit movements to other parts of the home, which makes it safer during an infectious outbreak. “When you design with a zonal approach, you can completely seal an area down and contain whatever’s going on in there,” explains Knowlton, who was formerly the COO of Primacare Living Solutions and oversaw the transition at Henley House. “It’s no different than in your own house.”

When one resident became agitated, for example, staff knew a bath would help calm him down. “What was the outcome?” says Knowlton. “That resident gets bathed every single day and is not being given harmful medication.” Other outcomes? “People eat better,” she adds. “We have zero use of supplements. There are fewer falls. It’s calm, residents are engaged, staff don’t wear uniforms — at night, they wear pajamas.” Henley House fared well during the first waves of the pandemic, with only one case among its residents. But, equally important, residents appeared to take the stress of lockdown in stride — something Knowlton was not expecting. “Zero responsive behaviours,” Knowlton adds. “How can you have a dementia home with zero responsive behaviours? We do.”

Each of the residents’ families chooses a particular colour or pattern for the bedroom door — one that they associate with home and is easily recognizable as their own. And they’re given safe and controlled access to the outdoors — a design feature that everyone agrees is essential for quality of life. “Why shouldn’t you be able to sit outside and see the school buses go by?” asks Knowlton. “We really maximize the restorative principle of nature, and not in an artificial or contrived way.”

Anderson and seniors’ advocates have no shortage of ideas when it comes to the best design for seniors’ homes, such as incorporating porches and balconies to connect residents with the outside world, and using virtual reality and technological tools like robots to cut down on isolation and boredom — two things that have proven to be almost as destructive as the virus itself — and help with caregiving.

This spring, the federal government pledged $3 billion over five years to develop new standards in LTC infrastructure design and delivery — not nearly enough by any means, advocates agree, but a start nevertheless.

The Quebec provincial government, whose long-term care homes were particularly hard-hit during the first wave of the pandemic, has announced plans to renovate existing facilities to create 2,600 new spots in smaller, 12-person units, with single rooms, private washrooms and access to nature. Alberta’s United Conservative Party recently announced it would phase out rooms with more than two people starting July 1 and step up monitoring, inspections and audits.

Across Canada, the pandemic’s toll on LTC residents and their families has been astronomical, but seniors’ advocates hope those losses were not in vain. “The public has woken up to the fact that, ‘Oh my God, how did we let this happen?’” says Sinha. “And when people ask who’s to blame for all this, we all are. We’ve elected successive governments [in Ontario] that have really ignored this whole issue.”

But COVID-19 is a wake-up call that will be difficult for decision makers — and voters — to ignore.

Indeed, with seniors over 65 projected to number 9.5 million — 23 per cent of the population — in less than a decade, “you would think there would be some recognition of the sheer volume of voices that are wanting to be heard,” says Legeros, the Canadian Association of Long-Term Care director.

A version this article appeared in the Aug/Sept issue with the headline “No Place Like Home,” p. 32

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