Ending the neglect of continuing care in Canada
By Laura Kadowaki
Originally published in the December 2021 issue of the GRC News.
In april 2020, Canadians were subjected to a striking sight: Canadian Armed Forces being deployed to care for residents in covid-stricken long-term care homes in Ontario and Quebec. During their deployment, members of the Canadian Armed Forces released reports on the poor conditions in long-term care homes that were shocking to many members of the public — severe understaffing, lack of access to basic supplies, bug infestations and lack of cleanliness, and residents left sitting in soiled clothing. However, to researchers, front-line staff and advocates, these reports were not surprising, as they had been trying to raise alarms about the neglect of continuing care in Canada for many years.
Reports by leading scholars and experts (see Restoring Trust: covid-19 and The Future of Long-Term Care by the Royal Society of Canada and Long-Term Care and covid-19 by the Special Task Force on Long-Term Care) have critiqued Canada’s pandemic response in long-term care facilities. These reports highlight that many of the weaknesses of Canada’s pandemic response are the result of persistent, systemic deficiencies. For example, the Royal Society of Canada report states:
“Canada’s response to covid-19 has exposed long-standing, wide-spread and pervasive deficiencies in the LTC sector. Deep operational cracks compromise a pandemic response. They also sabotage ongoing quality of care, quality of life and a good death, quality of work life for staff, and health and safety of residents, caregivers, family and staff.” (Estabrooks et al., 2020, p.12).
It is not just long-term care homes that have been neglected in Canada though, continuing care systems as a whole have failed to receive the policy attention they deserve. My dissertation research examined continuing care systems over the period of 2012–2019 in Canada, Australia and Denmark. Analysis of Canadian continuing care systems (in B.C., Ontario, Quebec and Nova Scotia) identified systemic issues and persistent neglect. The neglect of continuing care in Canada has resulted in significant quality issues in long-term care homes and the downloading of responsibilities onto individuals, informal caregivers and non-profit organizations in the community. Below some of the current systemic issues in Canada are described, with some specific examples provided from B.C.
Declining access to continuing care services
Despite increased levels of investment and policy attention towards continuing care services, supply does not appear to be keeping up with demand. For example, in B.C. over 2001–2016 access to home support declined by 30% (Longhurst, 2017). Long wait lists for long-term care beds also continue to exist.
Health human resources
Staffing shortages are reaching a crisis point in continuing care sectors. While most attention has focused on staffing shortages in long-term care homes, home care services are also experiencing critical shortages. For example, the B.C. Care Providers Association (2018) projects that by 2027 B.C. will need 18,650 new health care assistants. An additional issue is the lack of enforceable standards for staffing levels in long-term care homes.
IADL supports
The role of the state in providing iadl supports is contested in many provinces and most iadl supports are provided on the margins or outside of the health care system. iadl support programs are usually excluded from larger coordination mechanisms and case management and may be inconsistently available. In comparison, iadl supports are much more readily available in Denmark and Australia, which both offer a broad range of supports.
Increasing pressures from the acute care sector
Continuing care sectors are also facing increasing pressures due to historical hospital downsizing, increased use of outpatient care, and policies to discharge patients as quickly as possible (Ostry, 2006). In particular, policy has emphasized the use of home care as a substitute for acute care and jurisdictions are reporting increasing pressures on home care by short-term patients as a result (e.g., Office of the Seniors Advocate, 2019).
Lack of policy attention towards the needs of informal caregivers
Recognition and development of supports for informal caregivers in Canada has been slow compared to other international jurisdictions (e.g., Australia). This is particularly apparent in B.C., where informal caregivers were almost never mentioned in Ministry of Health Policy documents over 2012–2019.
The dismal performance of long-term care homes during the covid-19 pandemic can be viewed as further evidence of the neglect of continuing care in Canada. A study of covid-19 related mortality in long-term care homes in 21 countries reported Canada had the second highest proportion of deaths in long-term care facilities (80% compared to an average of 46% in other countries) (Comas-Herrera et al., 2020).
A root cause of many of the issues within Canadian continuing care systems appears to be inadequate funding. Continuing care is not included in national legislation (Canada Health Act) and as a result it has an ambiguous status in the Canadian welfare state and within current funding models. Over 2012–2019 all of the Canadian jurisdictions of study reported increasing levels of spending on continuing care services. However, policies (e.g., higher eligibility requirements to access services, discontinuing home care services in the last quarter of the fiscal year) and indicators (e.g., declining number of home support hours, long wait lists for long-term care home beds) suggest that spending is not keeping up with the demands of aging populations. In B.C., an analysis by McGrail and Ahuja (2017) of health care spending demonstrated that the proportion of public spending on long-term care and home care has significantly decreased, suggesting that cost-shifting from the public health care system onto older adults and their families is occurring.
The costs of continuing care are expected to continue increasing in the future, and access to publicly subsidized continuing care services is essential. Without publicly subsidized care, the oecd has estimated in Canada approximately 30% of people with low level home care needs, 80% with moderate home care needs, 90% with high level home care needs, and 70% with institutional care needs would be living in poverty (it should be noted that even with publicly subsidized services there is a proportion who are still living in poverty) (Oliveira Hashiguchi & Llena-Nozal, 2020). The ambiguous position of continuing care in Canada is contributing to the marginalization, medicalization, and underfunding of continuing care systems. Current discussions about long-term care home financing driven by the covid-19 pandemic provide an important policy window for further policy discussions about the funding of continuing care systems as a whole. If a federal funding model were introduced, this would help ensure adequate funding of continuing care and also provide formal recognition of services such as long-term care homes and home care as necessary services for older adults and ensure that all Canadians are entitled to a general basket of services. Researchers have suggested that this could be achieved by expanding the Canada Health Act or introducing a separate tax-financed or social insurance scheme (e.g., Chappell & Hollander, 2011; Lanoix, 2017; Hébert, 2016).
In my dissertation I also examined the continuing care systems of Denmark (considered to be the gold standard for elder care by many) and Australia as international comparisons to the Canadian systems. While the Canadian examples, Australia, and Denmark were all pursuing similar policy objectives to substitute lower cost care in the home and community for higher cost care in institutions, only Denmark appeared to be successfully implementing these policies in a manner that resulted in limited downloading of responsibilities onto individuals and their families. In Denmark, “at home as long as possible” has been a key aim of the elder care system, and a combination of alternative housing models and generous home care services has been used to actualize this goal. Many older adults live in alternative housing models rather than traditional nursing homes, and these housing models are able to provide a high level of care. Denmark also spends 2.5% of its gdp on elder care, and 66% of elder care spending is on home care, while 34% is on residential care (European Commission, 2019). Denmark’s elder care spending is twice that of Australia and Canada, which both spend the majority of their funding on residential care.
The covid-19 pandemic has provided a potential policy window to both reinvest in continuing care systems, and also rethink the roles of different continuing care services and how we should care for older Canadians. Baby boomers are expected to be more independent and have higher expectations for care than past generations of older adults. Furthermore, a recent survey of 1,517 Canadians aged 18+ conducted by the National Institute on Ageing/TELUS Health found that 55% of Canadians reported the covid-19 pandemic had changed their opinion on whether they would place a loved one or themselves in a nursing home or retirement home (National Institute on Ageing, 2020). However, to-date governments have generally failed to take the steps necessary to provide viable alternatives to long-term care homes for many older adults. Older adults find themselves stuck between a rock and a hard place, where they do not want to enter an institution but there are inadequate supports available to allow them to age in place in their own home or a more home-like community setting. Currently B.C., as well as other jurisdictions, are failing to develop the coherent package of policies (e.g., supportive vision and strategies, adequate funding, supports for informal caregivers, health human resource strategies, comprehensive continuum of services) necessary to support older adults to age in place without significant and unsustainable downloading of responsibilities onto older adults and informal caregivers. The example from Denmark shows it is possible for a significant shift in care from institutions to the home and community to occur with limited downloading onto individuals and their families, but also that Canada has a far way to go to meet this ideal.