It has taken the devastating impact of COVID-19 for governments to pay heed to decades-old warnings from seniors and disability advocates about the need for long-term care reform.
Reacting to the continuing wave of deaths, the Ontario government has announced more money for additional long-term care beds and a commitment to provide a minimum of four hours of direct care for each long-term care resident by 2025. Further changes are expected in the wake of the second interim report by Ontario’s Long-Term Care COVID-19 Commission, which called for more accountability and focused inspections to ensure each facility is capable of preventing and containing outbreaks.
However, advocates hope for far more than basic infection control, minimum standards of care and more beds.
An April 2020 report from the Canadian Centre for Policy Alternatives states that while safety is the priority now, “We must make sure that we build on the existing research while drawing lessons for the future that allow us to do more than provide a safe environment for all those who live, work and visit in long-term residential care.”
But what does high-quality and patient-directed long-term care look like in practice? And is it feasible in Ontario, with its mix of dense urban and sparsely populated rural settings, for-profit homes and public institutions and diverse cultural and linguistic groups?
Experts say there’s no one single solution but point to innovative models to implement or learn from. One promising alternative that is drawing international attention is The Green House Project in the U.S. This small nursing home model is demonstrating remarkable success in not only limiting infections and deaths from COVID-19 but also in providing improved quality of life for its residents, resulting in better health outcomes and life satisfaction and reduced healthcare spending overall.
According to a Green House Project handout, from February to June last year, 95 per cent of its small homes were COVID-free, with only four deaths among the 2,788 patients living in the small homes.
Meanwhile, Ontario’s 623 registered nursing homes reported 1,465 deaths in 308 outbreaks during that same period. As of Jan. 7, in the midst of the second wave, the death toll has risen to 2,909 residents, demonstrating an urgent need for further transformation of Ontario’s nursing homes.
Susan Ryan, a nurse and senior director of The Green House Project, attributes its success to a non-traditional approach to care: smaller environments with private rooms, continuity of care and richer relationships with fewer care providers and access to the amenities of home, including being able to go outdoors freely and allowing residents to prepare their own food.
The typical Green House Project home is a self-contained residence with 10 or 12 private rooms, each with a private bathroom.
Ryan describes how “each of those rooms is centered around a hearth area, kind of an open concept where we have the centralized dining and kitchen, so that you’ve got an open kitchen where meals are prepared, where you’ve got access to food 24/7. And the living room just really invites socialization and the opportunity to connect with people in the home. Because it’s so much smaller, it really gives the opportunity to build relationships.”
She says that the family dining table that is integral to the design of each of its homes – rather than the typical dining hall with multiple tables seen in most nursing homes – is particularly important for people with dementia who do better in familiar environments.
The laundry and most other chores are decentralized, meaning they are done in the home, with residents contributing when they can. Ryan says there are typically two direct caregivers for every 10 residents. “Those caregivers are also doing the cooking; they’re doing the cleaning. They’re doing the laundry right along with the care.”
This has significantly reduced the traffic of workers in and out of the home and between facilities, which is important for infection prevention and control. In contrast, in Ontario’s nursing homes, particularly early on in the pandemic, care providers worked at multiple sites.
Ontario nursing homes, particularly in the for-profit industry, continue to contract out entire services such as laundry, food and security, which brings additional people into the buildings.
Studies have shown that while the caregivers, who are typically certified nursing assistants (known in Ontario as personal support workers), have expanded responsibilities in Green House Project homes, they still spend more time in direct care activities and engaging directly with residents than in traditional nursing homes.
Ryan notes that having fewer residents and consistent staff means better relationships, which she says is central to good care. For example, she says that when staff members know the residents well, “they are better able to early-detect when somebody’s just not right (with respect to their health) and it translates into better outcomes – and not just from a quality-of-care perspective but really a quality-of-life perspective.”
When family members were prohibited from visiting during the early days of the pandemic, Ryan says staff had “relationships with the residents and their family members. And so, they were able to communicate with them and say, ‘Don’t worry,’ and be able to say, ‘Hey, your mom’s great today … and let’s do some Facetime.’”
With respect to the financial feasibility of such a model, studies suggest that “while perhaps counter to prevalent beliefs … it is possible to provide a high quality of life and care through The Green House model at a net profitability and return on investment comparable to large, traditionally structured nursing facilities.”
A published review of the financial implications of the model found the increased costs of more direct care were offset by decreased administrative and management costs. Further savings are found in hospital expenditures, as Green House Project residents require fewer hospital resources, using approximately USD $1,300 to $2,300 less in total Medicare and Medicaid costs compared to traditional nursing homes over a one-year period.
The most expensive aspect of the model is the square footage provided to each resident – which is a significant barrier to implementation in Ontario, particularly in locations such as Toronto and other urban centres where space is limited.
Pat Armstrong, a York University researcher who has studied long-term care homes in Canada, the U.S. and Europe for more than a decade, says that while “in the city there’s not much space, period,” there are ways to adapt the concept to urban areas.
“There’s no question that we need smaller spaces within those big places,” she says. “The huge 35-person units we have here – we all would agree that that’s not very conducive to care.”
One example Armstrong points to is The Dorothy Macham Home, a Toronto facility built to look like a one-storey home that houses 10 veterans with moderate-to-severe dementia. The non-institutional setting offers individual rooms and outdoor garden space as well as specialized care for advanced dementia but is supported by the resources of the Sunnybrook hospital next door.
Armstrong also wants to diversify our understanding of what “home” means in the context of long-term care. “What I hear over and over and over again is these places are their homes … but everybody has a different idea of home.”
She suggests that larger nursing homes could dedicate entire floors or units to a specific cultural focus to meet the needs of a population and design the look and feel of the unit to fit what the residents see as home.
Armstrong also notes that “You can get not only economies of scale in a bigger place but you can have more flexibility” in larger facilities, allowing for a wider range of entertainment and access to various types of therapists that can be employed full-time in a bigger institution.
And Armstrong shoots down the notion that home care is the solution. “We talked to a residence council here in Toronto about whether it is better being (in long-term care) than being at home. And they unanimously said yes.
“They said they had company and ‘even if I don’t like all of the people, there are people, and if I was at home, I’d be all alone.’” Armstrong adds that activities were also a priority, even if they were minimal because they felt that if they were at home, they would just be watching television.
Armstrong says she ultimately doesn’t have a preference for Green House Project homes over other alternative models, such as the Butterfly Model or Montessori homes, which have shared principles. But there are urgent lessons to be learned for improving our current system: “The central one is more staff, more autonomy for the staff. More attention to the social and the emotional rather than focusing on tasks and the medical. And comfortable physical environments.” Most importantly, she wants the future of long-term care to “go in the direction of standards and not standardization.”
“It’s about adjusting the care to fit the population and not just the population but the individuals,” she says. “And all of that requires particular kinds of conditions of work. It requires more staff. It requires a recognition of skills. As we like to say in our project, the conditions of work are the conditions of care.”
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Great and informative piece. The question remains as to how we get government to act. The time for another study is well past gone. Politicians know there are issues, know what they are but continue to refrain from acting. Even when they act by throwing money at the problem, it does not work. It’s easy to throw money at something. This needs to be managed with new regulations quickly passed and enforced. We have no dearth of solutions but still have not come up with a way to get to effective action being taken.
I should have also added that what is needed is an investment in quality, easily accessible, reliable homecare provided by publicly funded, not-for-profit providers (without the loop hole of sub-contracting) Home Care. There must be no limits to actually allow people to age in place, where they truly want to be. It is also extremely important to support families as they support their loved one. This will allow re-investment in care rather than any profits going into the pockets of CEOs and stakeholders. By reducing the investment in LT facilities, investing in Home Care, will lessen the dependency on these warehouses where people lose all rights.
In my mind, 10-12 is still too many people with complex needs. This will allow for the institutional model and mindset to permeate and quickly erode the principle of supports based on the needs of the people. Small community based homes (3-6 people) where people can gather around a dining room table, making it feel like a real home is a better alternative to preserve person-directed real care.
Thank you Kaleigh, for your article and Pat Armstrong’ research, both of which articulate my thoughts and the urgent needs of so many residents/their caregivers. My dad was a resident in LTC for 5 years. These were 5 years of absolutely unnecessary, unbelievable chaos, numerous upsetting, family/work-life disruptions and upheavals. This, as many caregivers experienced, resulted in emotional/mental stress, as well as great financial costs. Though dad passed, I “could not, not keep pursuing, advocating” for LTC quality improvements for our seniors/their caregivers. We have all paid dearly and sadly, unnecessarily. Many essential caregivers continue to trod this well-worn, immensely difficult, path.
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Through research, analysis of the LTC system, the government’s role in their functioning, overseeing and managing them, it is all too obvious, as to how/why they are as dysfunctional as they are and have been for decades. This Covid-19 virus exposed the dysfunction, clearly highlighting the root causes. Plainly evident, the leadership competencies, of LTC homes, government and their visioning, planning, organizing, operationalizing, decision-making, monitoring and follow-up are in plain view on our radar. The alignment and performance of these elements in LTC homes’/government leaders are requisite to the well-being and sustainability of all organizations. As importantly, their accountability to seniors, caregivers, all constituents are at the core of the terrible abuse, neglect, suffering, deaths, we experience. The Military quite accurately, in detail, exposed these elements as the root causes of the failures uncovered. Their report, widely circulated to all constituents, stakeholders, perceptively, factually captured the evidence brought forth by essential caregivers, over past decades.
Questions of leadership (LTC management, government officials): Why were families’ concerns not believed, not acted upon all these years? Why were leadership (LTC, government) commitments/promises made, yet not kept? Why were penalties imposed on the non compliance of the LTC ACT, residents’, families’ rights, not commensurate with the horrific incidents that occurred in LTC? Why were more appropriate penalties/consequences, not imposed? Also, why was it families who had to leave good-paying, jobs/careers, to undertake, unpaid, and ensure the roles/responsibilities of LTC management/staff? Why were families, again, unpaid supervisors, the ones to monitor and report on staff/management’s non performance, violations of the LTC ACT to LTC’s management and MOH leadership? Why did caregivers have to sacrifice their ability to provide financially for their own futures and mentally, physically exhaust themselves?
Would Ontario’s “laws/regulations” allow/enable private enterprises/organizations to function the way LTC homes have? Imagine customers having to do employees’ work in retail, finance & all other private sectors/organizations? Imagine customers having to function as supervisory management staff and bring shoddy, law/regulation-breaking performance to the attention of CEO’s/senior management? And then, why have customers also conducted follow-up, to ensure performance was/is corrected/improved? This never was a strategy for success in any model of organizational performance.
The promised IRON ring around our seniors were simply wispy cobwebs, tossed away, along with human rights, blatantly disregarded by many LTC homes and by government’s abject failure to act in seniors’ best interests, over the summer. They did not act. Our government’s responsibilities are to: ensure the appropriate government ministers/managers have the right skills to exercise their designated responsibilities – to ensure, (like Quebec) that LTC’s hire more staff (for appropriate staff to resident ratio), train, equip them with appropriate PPE, pay them a living wage/benefits, ensure staff only worked in one LTC home, hold LTC management and government minister/managers accountable to the LTC ACT, residents’/ caregivers’ rights, insist on the up-grading of LTC homes for protection. This, a modest start, for current LTC conditions.
Why are the leaders with the requisite competencies, skills, knowledge “absolutely” necessary to operate Ontario’s “government and health system” or, any system, organization, so silent ? Where are our guiding values, principles I’ve heard articulated by many health care and government leaders that I believed we all hold dear? All rhetoric?
We know, words, commitments, promises and accountability always have mattered and will matter. Our leaders’ know their willingness to act, with urgency, to do the right thing, equally matter. Their responsibilities are to “willingly and firmly” enforce the LTC ACT, no matter how hard or, the cost. Families will not abandon their loved ones. Our values – treating loved ones, others, with care, respect, compassion, empathy ; we all need, all of these, as human beings. These are broadcast as important and stated as being carried out (by government and LTC homes). Family, community, knowing what is right and wrong, propel us to act. There are tremendous failures to be addressed, now, without further delay. The erosion of trust and feelings of betrayal are pervasive among us.
I agree with Pat Armstrong’s research that: there are urgent lessons to be learned for improving our current system: “The central one is more staff, more autonomy for the staff. More attention to the social and the emotional rather than focusing on tasks and the medical. And comfortable physical environments.” Most importantly, Pat wants the future of long-term care to “go in the direction of standards and not standardization.”
“It’s about adjusting the care to fit the population and not just the population but the individuals,” she says. “And all of that requires particular kinds of conditions of work. It requires more staff. It requires a recognition of skills. As we like to say in our project, the conditions of work are the conditions of care.”
I concur with the comments of Neil Stuart, Michael Rachlis and Barbara Sklar. To caregivers and those who know better and are trying to do better, a heartfelt thank you. It is a long road, yet, do not give up. Please take heart, go confidently, with intention, respect, in the direction of contributing solutions, lobbying, for what is morally, ethically, right. This, for all stakeholders, constituents and ultimately, the well-being, productivity and sustainability of our society.
The discussion should not be to decide which is better – Home Care or “LTC”. Many people would prefer Home Care, and it
should be improved to allow for those who prefer to stay in their homes. For those who need LTC, we need to change the name to ‘Community Care’ and focus on integrating residents with innovative approaches such as the Green House project, Eden, Butterfly and others. There are many large homes in the GTA (some that could be donated), that could be retro-fitted. Condo builders should also be required to reserve areas in their buildings. Respect and dignity for our elders (and others who need 24 hr care) must be our priority.
Green House concept is a great one it can be adapted to City’s like in NY (have four story building with 1, or 2 green houses on each floor . Government can purchase small Motels 30-50 rooms and retrofit to green houses in each floor 1,2 many options ,
I agree we need to re-think models of LTC. Institutions with small pods AND models of comprehensive home care provide better care and protection in case of outbreaks of infections diseases. See my Toronto Star May 2020 op ed for details — https://www.thestar.com/opinion/contributors/2020/05/08/this-is-the-model-for-long-term-care-we-need-and-deserve.html.
A great discussion piece. Kaleigh Alkenbrack is asking the right questions. In many respects, the our reliance on large-scale nursing homes is an industrial approach to care for the most frail elderly. The recent focus on ‘private vs. not-for-profit’ seems to miss the most important question of whether we have the best care models.