Money alone won’t fix the long-term care crisis in Ontario.
We face an incredibly complex and multi-faceted problem; while it is true that increased funding is part of the solution, the reality is that a paradigm shift is essential.
Long-term care in Ontario has many faces. For some, the Home and Community Care Support Services (HCCSS) may be enough, providing home care, long-term care placement services and facilitating access to community services. While these services may be government-funded, it is not a guarantee and private care is often required. The HCCSS is useful for those who simply need health and personal care support in their own homes, rather than frequent monitoring.
An alternative is the retirement home, an option for those who may not need significant personal/health support but no longer want the workload of managing their own homes or perhaps feel isolated on their own. These homes do not have 24-hour nursing care but may have a health professional on site. Retirement homes are 100 per cent privately owned.
The third option is the long-term care (LTC) home. In Ontario, these homes are regulated and funded by the government and require a licence or minister’s approval for both not-for-profit homes and those run by for-profit companies. LTC homes provide significantly more care than retirement homes, including access to 24-hour nursing care and assistance with most or all daily activities. The Ontario government pays for nursing and personal care, but the resident must pay for accommodation charges.
The COVID-19 pandemic had a disproportionate impact on residents in long-term-care, significantly affecting families and communities across Canada. According to the Canadian Institute for Health Information, in the first phase of the pandemic, Canada’s overall COVID-19 mortality rate was relatively low compared with other OECD (Organization for Economic Co-operation and Development) countries. However, while the pattern of infections among LTC residents mirrored those in the community, the highest proportion of deaths occurred in LTC homes, accounting for 81 per cent of all reported COVID deaths in Canada, compared with an average of 38 per cent in other OECD countries. Compared with the OECD average, Canada had fewer health-care workers per 100 LTC residents as of 2018, with a rate that was half as high as in the Netherlands and Norway.
Wait times have trended upward since 2014, with a sharp increase from 2019 to 2021. The median number of days people waited to move into an LTC home in 2020-2021 was 213 from the community and 80 from hospital. This is simply a supply-and-demand problem, an area where additional funding is necessary – we have 198,220 LTC beds but a 65-plus population of more than 6.8 million. In Ontario, there are 30 LTC beds per 1,000 people aged over 65, slightly above the Canadian average of 29. Ontario may have the highest total number of LTC homes at 627, but it also has one of the lowest proportions of publicly owned LTC homes (16 per cent), with 57 per cent owned by private for-profit organizations and 27 per cent owned by private not-for-profit organizations.
In fact, our current LTC model actually may be directly causing harm – 22 per cent of residents experienced worsening depressive symptoms while 19.3 per cent of residents without a psychosis diagnosis were given antipsychotic medications.
Improving wait times would have direct downstream improvements on patient care and acute care. Over the past several years, the number of ALC (alternate level of care) has steadily been increasing but the COVID-19 pandemic pushed these numbers to historic heights. Patients are designated as ALC when they occupy a hospital bed but do not require hospital-level care. Typically, they are awaiting a more appropriate setting such as LTC or rehabilitation/complex continuing care. During the pandemic, ALC patients made up between 16.5 per cent and 18 per cent of total hospital beds in Ontario, thus exacerbating overcrowded emergency departments and placing patients at increased risk.
Our current LTC model actually may be directly causing harm.
Bill 7, the More Beds, Better Care Act, 2022, was established to help ameliorate the situation. The act authorizes placement coordinators with or without a request from a physician to determine the eligibility of an ALC patient for admission to an LTC home, select an LTC home for them within a set distance (70 kilometres for Southern Ontario; 150 kilometres in Northern Ontario) and authorize admission to the home. This may be done even without patient consent if reasonable efforts have been made to obtain permission from the patient or substitute decision-maker. Moreover, if patients prefer to remain in ALC until a more preferable LTC bed is available, the patient can then be charged $400 per day. Patients are thus robbed of the choice of LTC homes that provide similar language/cultural values and close proximity to their families/communities, raising substantial ethical and practical concerns.
In terms of restructuring our long-term care approach, a key concept in Europe is “re-ablement,” an inter-disciplinary team including occupational therapists, social workers, physical therapists and nurses working with patients in their homes. There is also a growing movement in Europe to de-institutionalize LTC. The Norwegian government concluded several years ago that large, multi-storey buildings with tunnel-like corridors can be depressing. It provided grants and low-interest loans to renovate houses and build new facilities, roughly $10,000 for each person 65 and over between 1997 and 2005 and billions more in the decades since. It also provides financial support for buying assistive technology that make it easier to live at home longer. In Denmark, the system focuses on caring for people in their homes for as long as possible. The Lillevang community, started in 1998, consists of four buildings of 24 units each. Each building is divided into three, eight-unit, self-contained “families.” Residents live in individual units, each with a small patio garden. Workers, who are paid relatively well compared to Canada, don’t rotate shifts and always work for the same “family.” This movement toward a “household model” is gaining traction and is even being adopted in the United States.
To succeed in Canada, it would require a major shift in philosophy and a major re-allocation of funding. But there is no denying that radical change is required.
A shift with a focus on providing as much care as possible at home will ultimately reduce the number of patients in LTC homes and ensure that resources are equitably distributed. Moreover, in Canada, one either stays at home or goes into a retirement or LTC home. Instead, there should be a continuum of options that have the patient’s primary interests at heart. Denmark spends more on home care than institutional care; in fact, there has been a 30 per cent decline in institutional spaces. This is certainly a model that Ontario should be eager to adopt.
Another issue that must be addressed is the variability between LTC homes. Given that the majority of LTC homes in Ontario are not publicly funded, there are wide disparities between LTC homes. To improve the overall quality of care, for-profit LTC should be banned. For-profit LTC homes have had far worse outcomes during the pandemic compared to non-profit and publicly owned LTC homes.
Furthermore, there is a tendency in LTC homes to use agency workers on a shift-by-shift This is counterproductive. LTC staff should be, for the most part, full-time. The importance of fostering, lasting relationships with seniors who may be easily disoriented cannot be understated. Ensuring formal partnerships are fostered between LTC homes, hospitals and primary care teams can also allow for the right expertise to be available at the right time.
Finally, we cannot discuss elder care and long-term-care without discussing end-of-life care. Peacefully dying with dignity in our homes is perhaps a hope we all hold, but only 17 per cent of Canadians have been able to do so. Dying in an unfamiliar hospital or LTC home with staff you barely know is less than ideal. Appropriate palliative care is an effective way to have a say in your death.
For many, dying in a hospital is an avoidable event. Thinking through your end-of-life is daunting but learning about the various options and what suits your needs as you age is critical.