Canada’s healthcare system is often held up as an example to other countries. And Canada’s Covid-19 response has been more thoughtful and science-based than countries such as the US or UK. But one its biggest failures was brutally exposed during the ongoing pandemic: an unacceptably high rate of Covid-19 deaths among elders living in long-term care facilities. Of the 22,500 Covid-19 deaths in Canada thus far, nearly 75% occurred among elders living in institutional settings. Overall, 88% of Covid-19 deaths have been in people over the age of 70. Many elders died alone, without family or friends, and often without palliative care. And nobody has been held accountable for this disastrous outcome.
How did Canada fail to protect it’s elders? How did a country with a large elderly and ageing population fail to learn from other countries (notably European countries that were hit early in the pandemic) and take early measures to protect the seniors from Covid-19? Why does the Canadian healthcare system ignore the needs of elders, and push the institutional care model, over home-based care that is widely preferred by seniors? Is Canada doing enough to ensure access to palliative care and medical assistance in dying?
By reading Neglected No More by André Picard, I found my answers. André Picard is an award-winning health columnist at The Globe and Mail, Canada’s national newspaper, and the author of six books. Picard, named Canada’s first “Public Health Hero” by the Canadian Public Health Association, is highly respected for his health reporting and policy analysis.
Neglected No More is a powerful, well-researched, eloquently written book that dives deep into why and how Canada fails its elders. It shows how the root causes of the current crisis have been obvious for a long time, well before the pandemic arrived. I interviewed Picard to understand the bigger picture, and understand his prescription for reform.
Madhukar Pai: Andre, in March 2020, even before Canada’s first lockdown, you had sounded alarm, and warned that senior care facilities are especially vulnerable to Covid-19. Your worst fears were borne out subsequently. In your book, you show how eldercare in Canada is so disorganized, poor regulated, with poor infrastructure and accountability. This might come as a shock to folks outside Canada, since the Canadian universal healthcare system gets high praise worldwide. Can you explain why Canada has failed on eldercare, while it has seemingly done well on universal healthcare and many other social security measures?
André Picard: Canada has the least-universal universal health care system in the world. The publicly-funded health insurance program covers 100% of hospital and physician care, but only a fraction of other health services like home care and long-term care. While we do not have private hospitals in Canada, almost half of long-term care homes are privately run. While some ‘hospital-like’ services are subsidized, residents of care homes can pay anywhere from $1,200 to $15,000 monthly. Those who cannot afford to pay, generally are placed in ward rooms, with 3-4 to a room. Canada has a social safety net, but it is frayed.
Madhukar Pai: As you point out in your book, hundreds of reports and commissions have pointed out the systemic issues in eldercare, and the pandemic merely exposed these further. For a country with such a large elder population, why is there ageism and neglect? This is ageing country and nearly a third of Canadians will be 65+ by 2030. Why are policy makers and people not seeing this as their problem? After all, everyone will age and need help, sooner or later.
André Picard: Historically, eldercare was provided by a) families, b) religious-based charitable groups and, c) by the penal system, with workhouses for the destitute. We’ve never shaken off those vestiges, just sporadically tackled problems when crises arose. To make matters worse, public policies have not adapted to new demographic realities like the aging population, and smaller families. It’s more benign neglect than malicious neglect, but the end result is the same.
Madhukar Pai: Ageing at home, and dying at home with dignity, is what everyone wants, as you point out in your book. I know I would want that too. So, why is there is so much emphasis in Canada on institutionalized eldercare? What explains the lack of focus on home-based care and support?
André Picard: Canada’s health system is very hospital-centric. Home care programs are largely an extension of acute hospital care; it allows them to discharge patients early and free up a bed. As a result, the home care model is very task-based, and there are strict limits on hours – no one can receive more than 90 hours care every 30 days. That’s insufficient for elders with high-needs so the default position becomes institutionalization. There are also political realities: Buildings are visible, ribbon-cutting ceremonies are good political photo-ops. Home care operates invisibly in the background.
Madhukar Pai: Is Canada doing enough to ensure quality of death? How is Canada doing with medical assistance in dying? What reforms are need in this area?
André Picard: The vast majority of deaths in Canada occur in hospital, another example of how the health system is hospital-centric. Between 16% and 35% of Canadians who would be eligible for palliative care actually have access, and that varies tremendously by community. There are some wonderful hospices, but they are largely funded with charitable donations, so they tend to be in higher-income communities. Paradoxically, one of the hardest places to access palliative care is in a long-term care home; while residents live, on average, only 18 months in long-term care facilities, only 6% of them access palliative care. That speaks to the fact that provision of different health services is very siloed.
Canada is one of only eight countries in the world that allows medical assistance in dying. MAID has been legal since 2015-16, and now accounts for 2% of deaths. Initially, only people whose death was imminent (“reasonably foreseeable” in the language of the law) were allowed to request assisted death but, through legal challenges, there has been a push to expand access to people with severe disabilities, mental illness and even allow advanced requests by persons with dementia. This is the subject on-going, heated political debate.
Madhukar Pai: You end your book with a prescription for reform. If you had a chance to address the Canadian Parliament and present your prescription, what would you say to them?
André Picard: I would say three things:
1) The underlying principle of medicare – which Canadians cherish – is that care should be universal, that no one should be denied essential care because of an inability to pay, or because of where they live, or old they are. That principle is being violated every single day in the treatment of our elders.
2) Our values – fairness, equity, justice for all – need to be reflected in our public policies. Again, that’s not the case with eldercare. The way we treat elders, the generation that gave those values life by creating medicare and other social programs, have been forsaken.
3) We all love and cherish our parents, our grandparents, our great-grandparents. Doing so individually is not enough; we have to do so collectively as well.
Once we decide we want to give life to our values, everything else is just implementation, a technical issue. We already know what needs to be fixed, and we know how to fix it. All that is lacking is a political commitment.
Madhukar Pai: André, what motivates you to be such a strong advocate for health in general, and for seniors and elders, in particular?
André Picard: There is nothing more precious than our health. As someone who has been writing about healthcare, and health policy in particular, for decades, I have come to realize the impact public policies – economic, environmental, social justice, and more — can have on our health, individually and collectively. So I am, more than anything, an advocate for thoughtful public policy.
Elders, naturally enough, require more supports. They account for the majority of spending on sickness care and on many social programs. That’s a fact, not a judgment. And, again, it’s logical. Social programs like medicare are insurance plans – we pay into them our whole working lives, then we benefit from them as we get older. If we get care right for elders, and for high-needs elders like those with advanced dementia in particular, we will get it right for everyone.
Our interests are always shaped by our personal experiences. My parents both had long-term chronic illnesses – Lewy body dementia for my Dad, chronic obstructive pulmonary disease (CODP) and then vascular dementia for my Mom – so I lived the caregiving experience. It’s something almost all of us will experience, so we all need to take a personal interest. Finally, on a purely selfish level, I’m going to need eldercare some day – god willing! – and I don’t want unaffordable, mediocre care, and I don’t want to be a burden on my children. I want the system that I pay into my whole life to be there for me when I need it. We should all want, and expect, that too.
Madhukar Pai: André, thank you for your powerful advocacy and journalism. It’s making a difference. I am sure seniors in Canada are deeply grateful to you for using your platform and voice to advocate for them. Anne Dynevor, a retired educator in Montreal, has already read your book. “An 0ctogenarian myself, I know this sensitive and wise book will help to inform my decisions,” she said to me. Anne’s wish list, she told me, includes an opportunity to age in place, to receive care at home, and a chance to plan a dignified death. As you point out in your book, Canada is more than capable of meeting such needs. We just need the will to do it.