Neglected No More offers a prescription for improving the lives of aging Canadians

On March 8, 2020, in the early stages of the pandemic, the Globe and Mail published a column by its long-time health reporter André Picard. Picard warned that long-term care homes and other residential facilities for seniors were especially vulnerable to COVID-19 outbreaks. His warning came before any deaths in such facilities were recorded. Less than a month later, Picard wrote another, more pointed, column headed “If You Can Get Your Relatives out of Seniors’ Homes, Try to Do So as Fast as You Can.” Picard, an award-winning journalist, proved to be incredibly prescient. To our everlasting shame, at least 62% of the deaths from COVID-19 in Canada as of May 2021 had occurred in long-term care (LTC) settings – the highest rate of any G20 country. The tragedy that unfolded in LTC homes across Canada served as the motivation for Picard’s book Neglected No More, published in early 2021. Aside from the subject matter, it is an easy and quick read.

The tragedy that unfolded in LTC homes across Canada served as the motivation for Picard’s book.

The opening chapter reminds us of the horrors that were unfolding in LTC facilities in the first wave of the pandemic. Given the fear and panic amongst the public as COVID-19 spread, many workers in LTC homes simply quit. And, many homes failed to implement even basic infection-control measures. Residents suffered as a result. Some were left unattended and lying in their own urine and feces or were dehydrated and disoriented because they hadn’t received their medication. Non-sterile supplies like catheters were being reused. The situation was so dire that the military was deployed to some LTC homes in Quebec and Ontario. As Picard writes, “The Canadian Forces, with its outsider’s perspective, reminded the public that abuse and neglect were happening on a grand scale in institutional care.” Throughout the book, Picard locates the horrific events of early 2020 within a historical context. He cites some of the 150 official reports published over the last several decades describing the failures of LTC and the changes that were needed. Again and again, Picard circles back to the fact that, with few exceptions, the recommendations contained in those 150 reports were ignored by governments – at all levels and of every political stripe. The conclusion is clear: what took place in LTC homes in 2020 was predictable and preventable.

The book’s conclusion is clear: what took place in LTC homes in 2020 was predictable and preventable.

Picard writes with clarity and precision. To buttress his arguments, he cites a multitude of facts and figures. Those dry statistics are brought to life, however, by personal stories. He describes the real-life experiences of elders – a term Picard prefers to “seniors.” He also tells the stories of caregivers – both unpaid family members as well as healthcare workers. Picard also writes from his own experience. As they aged, both his parents encountered what he described as “the cascade of care … frustratingly difficult to access, disjointed, costly and, ultimately, mediocre at best.” Picard organized the 12 chapters of his book into two sections that mirror the book’s title.

Part One: Neglected

Comprising eight chapters, this section describes the ways in which the provision of supports to elders has, for many years, fallen far short of needs. While LTC homes provide a focus for the book, Picard’s purview is much broader. He offers an overview of home and community care for elders, for example. In addition, he has a separate chapter dedicated to palliative care and another on the impact of increasing rates of dementia. And he draws a direct link to the social determinants of health, reminding us that “poverty, marginalization and disempowerment are pathogens’ best friends.”

Poverty, marginalization and disempowerment are pathogens’ best friends. André Picard

Picard describes the history of LTC in Canada, positioning our current system as a descendant of the Elizabethan Poor Laws of 1601. The LTC home of today, for example, derives from the example of workhouses imported by early settlers from the UK that “housed criminals, the poor, orphans and the elderly rather discriminately.” In fact, the term is a misnomer, as the modern LTC home is often more of an institution than a home. Picard addresses the confusing nomenclature in elder care, providing a helpful distinction between LTC homes (sometimes called nursing homes) and other facilities housing elders, variously described as retirement homes, assisted living facilities, and continuing care homes. Approximately 190,000 residents live in LTC homes, mostly elders, although some are individuals with severe disabilities. An additional 170,000 elders live in retirement homes. While Neglected No More serves as a sweeping critique of LTC homes, it is just as critical of the lack of support for home and community care. Picard points out that 93% of elders 65 years or older live independently in the community. And the vast majority of elders prefer to remain in their own homes as long as possible. In spite of this, however, supports and services for elders skew toward institutional homes, with 80% of public spending allocated to institutional care, while only 20% is directed to home and community care. With the provision of care and support for elders falling primarily within provincial jurisdiction, it becomes very difficult to get a national picture on the actual state of elder care across Canada. A prime example of the provincial differences in elder care can be found in data on the ownership of LTC homes. In June 2021, the Canadian Institutes of Health Research issued a report entitled Long-Term Care Homes in Canada: How Many and Who Owns Them? Of the 2,076 LTC homes in Canada as of March 31, 2021, 46% were publicly owned, 29% were privately owned, and 23% were owned by non-profits. But those ratios varied tremendously from province to province. Alberta most closely mirrored the national statistics, with 46% of LTC homes publicly owned and the balance evenly split between private and non-profit ownership. In Ontario, however, 57% of LTC homes were privately owned, while 27% were non-profits and only 16% publicly owned. In Quebec, on the other hand, 88% of LTC facilities were publicly owned, with the balance split between private and non-profit owners. Picard touches but does not dwell on the debate about the relative merits of public versus private versus non-profit ownership of residential facilities for elders.

There are fantastic not-for-profits, and great for-profit homes, and there are some in each category who simply shouldn’t be operating. Tamara Daly

While private, for-profit LTC homes received much of the criticism in the early stages of the pandemic, Picard advances a more nuanced position. For example, he quotes Dr. Tamara Daly, a health services researcher at York University: “There are fantastic not-for-profits, and great for-profit homes, and there are some in each category who simply shouldn’t be operating.” He also cites a report from the BC Seniors Advocate, which concluded that “both for-profit and not-for-profit homes routinely failed to deliver the hours of care they were funded to deliver.” Picard does, however, credit the services provided by the “community sector” as being the only thing that has prevented the elder-care sector from complete collapse.

Part Two: No More

The final four chapters are intended to be more forward-looking and hopeful than the gloomy problem definition outlined in Part One. They describe positive and innovative approaches to elder care that could be scaled or adapted to a Canadian context. Tellingly, however, this section is only about a third the length of the first section. In a chapter entitled “Aging in Place,” Picard addresses the almost universal desire of elders to remain in their own homes. He describes several initiatives in Canada that offer community and home supports for elders that enable them to live at home as long as possible. He cites Oasis Senior Supportive Living in Kingston as an example of supports that can be provided in a “naturally occurring retirement community” (NORC). This approach builds on the fact that elders increasingly cluster in specific urban buildings or neighbourhoods. As a homegrown example of what an LTC facility could and should look like, Picard describes in some detail the Sunnybrook Veterans Centre in Toronto, where the average age of residents is 96. In one of the most interesting parts of the book, Picard describes the system of elder care in 12 other countries. Denmark has quite clearly established the gold standard. Unlike Canada and many other countries, Denmark heeded the early warnings of demographers about future challenges posed by the aging of the population. Denmark began to plan for that reality about 40 years ago and made healthy aging a policy priority that included a rejection of institutionalization. While a highly disproportionate amount of spending on elders in Canada is directed toward institutional care, the opposite is true in Denmark and some other Nordic countries where home and community care for elders receive the lion’s share of funding. Anticipating criticism that trying to adapt a Danish approach in Canada would be too costly, Picard explains that Danish spending on their universal healthcare system falls in the mid range of OECD countries. And Denmark spends less than Canada per capita even though their universal healthcare coverage includes LTC and home care. Picard ends his book by providing a high-level prescription for the transformation needed to better align the supports provided to Canadian elders with their needs. Included is an outline of the changes needed with respect to staffing, caregivers, LTC homes, home care, and funding, for example. The complete list serves both as a summary of the topics Picard addressed in the rest of the book as well as a checklist for anyone wanting to track progress in making improvements in elder care.

The problem we have in Canada is not an aging society … The problem is that we have done so little to prepare. André Picard

It is difficult to identify a single passage that sums up a whole book, but this comes closest: “the problem we have in Canada is not an aging society, which is actually a triumph of medicine and social policy. The problem is that we have done so little to prepare.” Our lack of preparation and ability to implement the kinds of changes needed is the current reality for Canadians, however. Whether anything will change as a result of the tragedy that befell residents of LTC homes in 2020 is an open question. Although motivated by the COVID-19 pandemic, Neglected No More is, in effect, a primer on the social supports available for a growing segment of the population. It is essential reading for anyone concerned about the current and future state of elder care in Canada.