Sandra Martin is the author of A Good Death: Making the Most of Our Final Choices, which won the B.C. National Award for Canadian Non-Fiction in 2017 and was a finalist for both the Donner Prize in Public Policy and the J.W. Dafoe Book Prize.
A year ago, in the phony lull between the devastating COVID-19 outbreaks in Italy and the first lockdown in Canada, my husband and I had a coffee date with one of his crusty, academic pals. You know the type – given to 50-minute orations on topics du jour laced with historical references to ancient catastrophes, such as the bubonic plague in the 14th century.
“Would it be such a bad thing if the virus culled the population of the old and infirm?” our friend asked rhetorically.
“Wouldn’t that include you,” I interjected, pointing out that we had celebrated his 80th birthday the previous September.
“But I am not infirm,” he shot back.
“Just wait,” I thought grimly, as my friend, who I know to have a generous heart, warmed to his curmudgeonly argument, extolling pneumonia as “the old man’s friend” and deriding our contemporary unwillingness to recognize the inevitability of death.
He was not alone in his view, but at least he didn’t try to turn private musings into public policy, as Alberta Premier Jason Kenney did last May. Mr. Kenney signalled his scorn for seniors when he informed elected members of the provincial legislature that “the average age of death from COVID in Alberta is 83, and I’ll remind the house that the average life expectancy in the province is 82.” He went on to argue that the province couldn’t “impair” the social and economic health of the broader population “for an influenza that does not generally threaten life apart from the most elderly, the immunocompromised and those with co-morbidities.”
Would we be so blasé as a society if the victims were 20 years old, rather than 80? Probably not, although I’m not so sure that we care more about the vulnerable young, considering Canada’s lacklustre response to the opioid crisis. Nevertheless, dismissing older victims of COVID-19 as discardable because they are living on borrowed time is beyond inhumane.
What bothers me is not just the fact that the elderly have died at a much greater rate than the general population, but how they have often died: alone, isolated from family, loved ones and other residents, dehydrated, scared, lying in their own filth, desperately and futilely calling for help in understaffed, underregulated long-term care nursing homes and residences. Some of the desperately ill were shipped to hospital intensive-care units, where they expired attached to high-tech machines without a chance to say goodbye, other than a Zoom call, or to have loved ones gather around their bedsides.
There’s an adage that defines the way many of us live our lives: We want independence for ourselves and safety for those we love. That’s how we raise our children, under 24/7 supervision, with the help of relatives, daycare and nannies, depending on our affluence; it is also how we take care of our parents and grandparents by placing them in LTC homes, facilities that morphed during the pandemic from allegedly safe havens into death traps.
I’m an early boomer. I aspire to be a centenarian, the fastest growing demographic in this country, but I know that I am likely to die before I reach that milestone. That’s not ideal, but it is okay. I would also willingly sacrifice my place in the vaccine queue if my children and grandchildren could get their jabs sooner. What I don’t want is to die from neglect, warehoused in a crumbling facility like a commodity to be shelved until my best-before date expires.
I want respect and the autonomy to make choices about my life and death rather than numbly succumbing to somebody else’s bankrupt notion of “safety.” I’m not alone in that view, a point that has been driven home during the pandemic by the rising outrage about conditions in LTC facilities.
Last June, the Canadian Institute for Health Information, or CIHI, reported that 81 per cent of Canada’s deaths during the first wave, “occurred in LTC and other congregate settings – nearly twice the international OECD average of 38 per cent.” Researchers at Ryerson University’s National Institute on Ageing, or NIA, further found that there were 74 times more deaths among older Canadians living in LTC and retirement homes than in their own homes, or “three times higher than the OECD average.”
A pandemic, like the prospect of hanging, concentrates the mind, or at least it should. We hear a lot nowadays about reforms and regulations of the LTC system: more inspections, more funding, getting rid of for-profit homes, higher wages, paid sick leave and full-time employment for care workers so they don’t take contagion from one home to another, and retrofitting existing residences to make all rooms single occupancy. The list goes on.
However, little reformist energy is devoted to a fundamental rethink of how we care for the elderly in this country. Now that vaccines are becoming more widely available, isn’t it time we thought about revamping our lauded universal health care system in order to modernize and right-size it to fit current demographic realities?
A just-released report from the NIA and the Canadian Medical Association, which surveyed more than 2,000 Canadians, 18 and older, in late November and early December, states that 85 per cent of Canadians of all ages and 96 per cent of people 65 and above “will do everything they can” as they age “to avoid moving into an LTC home.”
I’m with them, but realistically what choice do many of us have? Where we spend our allegedly “golden years” depends on our personal financial resources. If you aren’t affluent enough to retrofit your home and to hire a roster of personal support workers to augment the pathetic amount of home-care hours the provinces and territories provide – in Ontario the basic allotment is 14 hours a week, or two hours a day – you are heading to the modern equivalent of a Dickensian poor house.
Equal medical access for all is the principle on which medicare was based. Why is it different when an aging population needs chronic rather than acute care?
That is the question I put to Samir Sinha, director of geriatrics at Sinai Health System and the University Health Network in Toronto and director of health policy and research at the NIA. He was pretty blunt about the inadequacies of our current system, which was invented back in the mid-1950s. “At that time,” he said, “very few of us lived beyond our 60s and 70s, so we built the system that we needed then,” one that was based on doctors and acute care in hospitals, not one that catered to the needs of an aging and infirm population suffering from complex chronic diseases.
The federal government transfers health care dollars to the provinces and territories, but by leaving gaps, such as home care and pharmacare for them to figure out on their own, we have a LTC system that “exists on the edges and that is underfunded to the tune of one-third of what the average OECD [country] spends,” he says.
“When you look at other countries, like Denmark, that have done a heck of a lot better,” he continued, “you realize that they recognized that they were aging and they should expand their universal health care system to ensure it is providing the right amount of care, which includes home and community services and long-term care.”
Back in the late 1980s, Denmark made a massive policy shift by aggressively spending money on their home-care system, which is administered through municipalities and includes assessments, preventive, rehabilitation and restorative care. In doing so, they discovered that by providing more care in the community, they didn’t need to build more LTC facilities, and they could actually close acute-care beds.
In Canada, according to Dr. Sinha, 15 per cent of acute-care beds are filled with people waiting to go to their own homes or to nursing homes, which are in short supply. So, by investing in home care, “Denmark solved a bunch of problems, by providing the care that people wanted and needed,” he said, “and frankly, it was far cheaper for their overall health system "
At the same time, Denmark instituted a human-resources strategy because they realized that they needed more geriatricians in an aging society. In the same way that Canada ramped up its training of pediatricians to deal with the baby boom, we need to create more training places for geriatricians, nurses and nurse practitioners. The numbers tell the tale: We have 10 times as many pediatricians today (more than 3,000) as geriatricians (304) in a country with a plunging birth rate.
As well as looking elsewhere for policy innovations, we should be paying attention to underused homegrown solutions including “Autonomy Insurance,” an initiative proposed in 2013 by geriatrician Réjean Hébert when he was minister of health and social services in the Parti Québécois government of Pauline Marois. The plan, which died when the PQ government was defeated in the 2014 provincial election, was similar to systems in place in Germany, Japan and South Korea. Under the scheme, health care specialists would assess and then deliver support services to individual patients where they live, rather than moving them into LTC facilities.
Autonomy Insurance, paid for by a payroll tax, was designed to cover the costs of professional services such as nursing, as well as daily physical and domestic assistance, including bathing, meal preparation and housecleaning. “It is a question of allowing the elderly the freedom to choose if they want to live at home,” Dr. Hébert (now a professor in the school of public health at the University of Montreal) said at the time. “We have to move in that direction otherwise it will be unsustainable for the health care system.”
We don’t know which one of us is going to get cancer, Dr. Sinha explains, in the same way that we can’t predict which of us will develop dementia, but by “sharing the risk,” we all pay into a system that will be there for us.
A decade later, no such public system allowing the elderly the freedom of an affordable choice if they wish to age in place is available in Canada, although a number of private insurance companies are offering similar policies to their customers.
Dr. Sinha says Dr. Hébert’s Autonomy Insurance scheme is “brilliant,” but that it has little hope of gaining traction on the federal level, as the opposition would criticize it as just another tax. “Frankly,” he said, “if we are looking at the future of aging, we need to look at public financing because the only people who are offering it are insurance companies who are selling these products to wealthy people who can afford it.”
Buying private LTC insurance, like moving into a snazzy for-profit retirement residence, is not a realistic option for the growing number of Canadians who are retiring without a workplace pension or a detached home to sell in a real estate hot spot. They have no choice but to rely on their strapped families for unpaid care, spend their dwindling days in a poorly funded publicly accessible nursing home – or more likely both. If, that is, they can survive long enough to get to the top of the wait-list. That is no way to live – or die, as even my octogenarian friend agrees.
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