How Did We Get Here?

For at least two decades, there has been a growing recognition that Canada’s long-term care (LTC) system is in need of a major overhaul (Estabrooks and Keefe 2020).  With depressing regularity, media exposés across the country tell stories of shocking neglect and mistreatment in nursing and retirement homes (Welsh 2015), occasionally pointing to underlying, systemic causes: an overreliance on costly institutional care (Canadian Institute for Health Information 2020), lax quality and safety regulation (Ontario LTC Commission 2021), and intensifying acuity of needs among seniors who have no alternative but to remain in the system (CIHI 2020).  

COVID-19 crashed into this already broken system, exposing its many abject vulnerabilities.  Of Canada’s confirmed and probable COVID-19 deaths, 85% were in LTC homes— far higher than the comparator countries examined in a recent study by the US department of Health and Human Services (2020).  The proximate causes of these disastrous outcomes are now well understood. Governments prioritized infection control in hospitals, returning infected patients to LTC homes and triggering outbreaks (Grant and Ha 2020). There was a failure to provide LTC facilities with adequate personal protective equipment and enforce infection control measures (Loriggio 2021).  There was insufficient testing and tracing— even as contract staff itinerated between LTC facilities, trying to earn a living wage on low wages with no sick benefits.   As with many aspects of the pandemic, our failure in LTC built on historical inequities and policy failings. 

A basic and enduring problem is the sheer lack of political accountability in this space. Just 4% of Canadians over the age of 65 live in long-term care facilities (OECD 2021). While this is higher than many other countries, it is a segment of society that by its numbers alone is easily marginalized in the contest for public attention and resources— and then there are compounding factors of ageism, disablism, and sexism (women are overrepresented both among residents and staff of LTC, Estabrooks and Keefe 2020).  As Steven Lewis puts it, “There is no active effort to beggar [public nursing homes]; their mediocrity is assured simply by the absence of strong political support to provide them with enough resources to make them better (2020).”

Another issue is over-reliance in some provinces on private, for-profit providers, whose incentives are to squeeze profits by understaffing, lowering care standards, and postponing investments in facility modernization (Armstrong et al. 2020).  A 2020 report on Ontario LTC facilities by the Canadian Medical Association found that for profit status is “is associated with the extent of an outbreak of COVID-19 in LTC homes and the number of resident deaths” (Stall et al. 2020).

In theory, the risks associated with for-profit delivery might be attenuated by savvy regulation or funding agreements between governments and LTC homes that enforce rigorous quality standards. But we have seen inadequate regulation, not for lack of detailed legislation, but due to a failure of enforcement.  Take as just one example how Ontario’s inspection regime for long-term care facilities slowed to a near-standstill in the years leading up to the pandemic— a CBC report found that only 9 of the province’s 626 homes received a comprehensive quality assessment in 2018 (Pederson et al. 2020).  With wait-times of up to 5 years for placement in LTC facilities in some regions of the country (Bueckert 2021), residents are unlikely to vote with their feet, and providers do not require a stellar reputation to maintain full occupancy.  

Looming Acute Fiscal Needs in LTC & Need for Federal Investment 

Without major reforms in how LTC is funded, organized and regulated, these challenges will only intensify as Canada’s population ages over the coming decades.  A recent report by the National Institute on Ageing (NIA) projects that long-term care costs will more than triple in real dollars by 2050, eating up nearly 20% of revenues from personal income taxes, federal and provincial (MacDonald et al. 2019). Lower fertility rates and socioeconomic shifts are projected to bring a 30% reduction in the availability of unpaid caregiving over the same period. So, to be clear, even without improving a thing we have a mountain to climb. After the travesty of COVID-19 wrought its effects on LTC homes, there was unsurprisingly a groundswell of calls for action and, indeed, diverse proposals for a national strategy on LTC. 

In response, the federal government established a Safe Long-term Care Fund of up to $1 billion, over two years, to be disbursed on a per capita basis to provinces and territories that provide detailed plans for how the funds will be spent and commit to providing follow-up reports (Department of Finance Canada 2020). However, this is but a drop in the bucket compared to current and projected needs. For example, the Conference Board of Canada projects a need to double LTC beds by 2035, which will entail approximately $64 billion in capital costs and $134 billion in cumulative operating costs (all in 2017 dollars) (Gibbard 2017).For the provinces, health care already accounts for around 37% of program spending, creating an understandable reluctance to undertake new, long-term fiscal commitments in LTC (CIHI 2021).  Much more significant federal investment is needed.

Co-ordinating Federal and Provincial Capacities

Broadly speaking, three types of reform are needed: significant new investments in LTC facilities and workers, tied to clear, enforceable quality standards (particularly around staffing); investments in home care, so that more people can ‘age in place’; and support for informal care providers, including respite programs, time off work, cash benefits, and training. In what follows, we will outline federal legislation needed to ensure national standards in institutional LTC, while acknowledging the synergistic role of home care and informal care. 

If our aim is to make significant federal investments to achieve radical improvements in the accessibility, quality, safety, and liveability of LTC institutions across Canada, how do we achieve this? 

A crucial question is how to operationalize these reforms within the framework of Canadian federalism. Though the Constitution does not explicitly assign jurisdiction over LTC, the financing¹ and regulation of LTC has evolved largely as the purview of the provinces.  In principle, there are clear advantages to having LTC administered at the provincial level.  For one thing, appropriate delivery of LTC requires a sensitivity to local culture and demographic needs— a system designed for urban Ontario will likely be a poor fit for rural Newfoundland.  Likewise, efforts at reforming institutional LTC may need to take account of provinces’ existing infrastructure – e.g., calls to phase-out private, for-profit facilities will be far more disruptive in provinces like Ontario which has seen a proliferation of facilities in this category. As well, the provinces have jurisdiction over important areas that interact with LTC, such as acute care and the education and training of health sector workers.  And even if federal funding is tied only to standards in institutional LTC, there will nevertheless be a major interplay with formal and informal home care services overseen by the provinces.

While the provinces must play a central role in LTC reform, there are two very strong rationales for working towards national standards in this area, supported by new federal legislation providing for the infusion of new dollars conditional on meeting certain conditions.  First and foremost, as a matter of basic equity, Canadians’ access to safe, high-quality LTC should not vary by province of residence.  By pooling costs nationally, we can achieve some equalization of the risks that arise from varied population aging and acuity of LTC needs across the provinces.  In this regard, it is of note that Canadians are overwhelmingly supportive of major national reforms in this area, such as including LTC under the Canada Health Act (CHA), giving it federal statutory protection on par with hospital and physician care ( (NUGBE 2020).  Second, given the fiscal challenges facing provinces in this space, that there is no real prospect of substantial improvement in LTC without a serious infusion of federal dollars. And yet, without meaningful accountability for how these new funds are spent then the politics of LTC—the competing fiscal pressures facing the provinces, and the limited lobbying power of LTC users—will militate against substantial improvements in either access or quality of care.

Improving on Medicare

An obvious way forward – demonstrably feasible from a constitutional perspective - would be for the federal government to flex its spending power, as it does with public medicare, to entice provinces to sign onto national standards for LTC.  In taking this approach to national reforms in LTC, there are lessons we can learn from our experiences with medicare relating to (i) sustainability of funding, (ii) the importance of ensuring accountability for performance over time, (iii) the need for independence and transparency/public reporting

(i) Sustainability of Federal Transfers The first key lesson is that the provinces-- understandably jaded by the federal government’s vacillating financial commitment to medicare-- will rightly demand a large up-front federal investment, with an iron-clad guarantee of sustainability over time (Busby 2021).

(ii) The Importance of Accountability for Performance over Time Another key lesson concerns the importance of transparency and accountability—an area where, unfortunately, the Canada Health Act (CHA) offers a cautionary example.  Roughly speaking, the CHA establishes only broad principles for how hospital and physician services are administered—provincial health systems must be publicly administered, provide universal coverage to all residents, and so on.  The abstract design principles laid out in the CHA, and mirrored in provincial legislation, have served a purpose, notably helping ward off two-tier care (Flood and Thomas 2020).  But where the CHA fails is in empowering the federal government to hold provinces accountable for the actual performance and health outcomes of their respective health care systems.  

(iii) Independence and Reporting to the Public. A key problem with the CHA over time has been the lack of enforcement of its measures. For example, the CHA requires “reasonable access” but, nervous of stepping on provincial toes, the federal government has never sought to enforce this provision against provincial governments, who have done little to respond to long wait time concerns. Similarly, with respect to the regulation of LTC facilities, there is a concern that direct regulation by provincial governments, particularly vis-à-vis for-profit providers, is often too weak or under-enforced—perhaps a reflection of the industry’s lobbying power, relative to LTC users.  This problem can be addressed by establishing an expert regulator operating at arms’ length— both from industry influence and government itself.

A Proposal for Federal LTC Legislation

What is needed is a robust but flexible national governance structure that ensures accountability of the provinces for the quality, safety and timeliness of LTC services. The standards can’t be set in stone but need to be flexible and evolving over time, in response to resources, needs, new technologies and so on. One way to achieve this is via new federal legislation that, as a condition of secure funding from the Federal government, requires provinces to delegate authority over LTC institutions to a central arm’s length regulatory authority. Although provinces cannot permanently sign away areas of constitutional responsibility, it is constitutionally permissible for them to delegate their regulatory authority to another level of government or an independent board or tribunal, in this case a LTC regulator (LaForest 1975).

Federal legislation should specify the LTC regulator is independent, with no government or industry representation except as observers, and responsible for setting evidence-based standards for LTC facilities, retirement homes, and home care.  These must include formal processes for assessing residents’ individualized needs, which in turn will trigger formal requirements in terms of staffing levels, training, and so on— thus ensuring that levels of care are calibrated to residents’ needs on an ongoing basis. The regulator should be transparent in its reporting on performance of LTC facilities across the country, enabling the clear identification of high-performing institutions and their recipes for success. And federal legislation should include provision for and funding of a LTC Ombudsman, investigate complaints and concerns raised by residents and their families can be made and investigated, and report systemic problems to the regulator.

Possible Softer Variations on Federal LTC Legislation

There are variations on our proposal for new federal LTC legislation to be considered. For example, some provinces may demand they have their own regulator rather than delegate to a central regulatory body. A softer approach, accommodating such provincial demands, also rely instead on national accreditation of LTC facilities. For example, in a recent analysis, Carolyn Tuohy calls for FPT governments to establish national quality standards for “qualifying providers” via a kind of accreditation agency (perhaps under the aegis of CIHI) (Hughes Tuohy 2021). Taking Tuohy’s proposal and combining it with the teeth of conditional transfer legislation discussed above, one could imagine new federal LTC legislation requiring provinces, in exchange for federal dollars, to require all LTC institutions be accredited by this central organization.

Interconnection to Formal & Informal Home Care

New funding and quality standards for the formal LTC sector are not enough: we also need investments in formal home care services and stronger supports for informal caregivers, who make a tremendous contribution to our society, often at the cost of major disruption to their lives and careers.  In the latter regard, there are a range of policy options here including cash-for-care benefit schemes (Flood et al. 2021)— direct public transfers to LTC recipients to support care at home, whether by family and friends or formal providers.  If the federal government provides a significant funding injection for LTC institutions via conditional transfers, this will free up room for more provincial investments in home care. The central regulator or accreditation body could also be asked or charged by provinces to develop standards for the delivery of home care. 

Conclusion

The COVID-19 pandemic is an ongoing stress-test of how countries protect their most vulnerable. The results are now in, and Canada’s LTC system has failed our elderly population, abysmally. Canadians living in LTC homes and their families, as well as those Canadians who may need care in the future, deserve a bold path for reform towards excellent LTC. The Federal government should strike a Royal Commission, to set out this path for reform and debate the parameters of new federal cost-sharing legislation to overhaul LTC.  It could also be charged with assessing different means by which to fund LTC into the future, for example, what mix of tax dollars, social health insurance, and co-payments are fair and efficient. It was through such commissions that major health reforms of the past were achieved, including the establishment of universal coverage for physician services in 1966, and the design of the Canada Health Act in 1984.  Achieving national standards in LTC is every bit as momentous and overdue as these past reforms. It is truly scandalous that a country which takes such pride in its universal healthcare system would show such profound and prolonged policy neglect in the adjacent sphere of LTC.   

Note

Given its current relevance, we have decided to disseminate this paper as an early release. The final version will appear in Healthcare Papers 20.1 to be released later this fall. An early release article is not considered the final version. Any changes to the article will be reflected in the online version of this article when it is published in Healthcare Papers.

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