Why Your Parents Get Lousy Care in Their Nursing Home

This essay was written in January 2020, before the COVID 19 pandemic struck Ontario, Canada. As I repost it on May 6, 2020, approximately 20 percent of Ontario’s long-term care homes have had COVID 19 outbreaks and a thousand residents have died from the infection. In all long-term care homes, residents are living under inhumane, soul destroying lock-down. Some journalists, eager to whip up the twin emotions of hysteria and pathological indignation among their “news consumers”, are behaving as if no one could have known what conditions are like in long-term care and how vulnerable nursing homes are to stressors such as COVID 19. Bullshit. Many knew, few cared (except during the macabre spectacle of the Wettlaufer inquiry), and now we compulsively wring our hands in public displays of concern. The pandemic has kicked off a national conversation on how long-term care should change. I believe we should deinstitutionalize elder care. 

Pre-pandemic yet relevant, The Essay.

Other than convicted criminals, senior citizens are the only people who are routinely kept in residential custody in the post-industrial world. The massive, brick edifices of the nineteenth century that housed orphans, paupers, lunatics, and invalids closed their doors permanently in the twentieth century. Residential schools for Indigenous children were finally shuttered, once and for all, a couple of decades ago and good riddance to those awful places. Nursing homes have bucked the trend.

Institutionalization is almost always a terrible idea, yet we put frail, old people into large, custodial housing facilities as if it were the most natural, inevitable, necessary thing in the world. It isn’t any of those things. When considered in the grand sweep of human history, it’s weird.

It’s also unsustainable. If we stick with our current institutional model of elder care, Canada will need to create approximately 200,000 more long-term care beds over the next fifteen years to accommodate the legions of Baby Boomers marching toward end-of-life. Hello! We can’t find enough staff for the 263,000 beds we already have.[1] We face some ominous demographic trends that should be scaring our bell bottoms right off us. It’s time to examine alternative ways of delivering care and change course so that all old people have access to high-quality care in their final months and years. This would be a departure from how we’ve run things for the last century and a half.

Today’s nursing homes are direct descendants of Victorian poor houses. The municipally owned nursing home where I work sits on the site of the former county house of refuge. Our ancestors viewed institutionalization as an efficient, compassionate response to the human suffering and need wrought by industrialization, urbanization, and mass migration. They built asylums for lunatics and the feeble-minded, orphanages for incorrigible urchins, vocational shelters for friendless and fallen women, and houses of refuge for the deserving poor.

Decades passed. Society evolved.  After a century and a half, those massive institutions had served their purpose.

By the mid-twentieth century, parents usually lived long enough to raise their children to adulthood and foster care replaced orphanages. People with mental illness had access to effective medications and out-patient psychiatry and stable patients were discharged from mental hospitals. Adults with disabilities were re-housed in their communities and children with disabilities remained with their families. Women with unconventional lifestyles joined regular society. After the Second World War, rates of unemployment plummeted, and social safety netting caught people who couldn’t work.

The only people left in institutions were the old. They’re still there. Except now the building is called “River Styx Manor” or “Valhalla Terrace” instead of the “House of Industry”. Essentially, empty institutions were a solution looking for a problem, policy makers decided the problem was old people, and the Victorian institution morphed into a human-eating zombie that forgot to die. Problems such as violence, boredom, and neglect inherent in earlier forms of institutionalization persist in its current, twenty-first century format, the long-term care facility.

Upon entering institutionalized care, human beings become widgets. Whether in privatized or socialized systems, each nursing home resident is quantified for funding purposes, placed on a care plan and schedule that dictates how her days will unfold, and monitored using documentation tools for quality control purposes. Health care experts spout jargon such as “resident-centred care” but most facilities are understaffed and overburdened with bureaucratic record-keeping, protocol, and routine, ironically at the behest of those same experts, making resident-centred care an unattainable ideal.

My experience as a frontline RN is common. I lead a team of kind, dedicated care workers and we struggle to keep the residents clean, fed, safe, and comfortable. On every shift we fall short though we’re compliant with government regulations, our “quality indicators” are acceptable, and the clipboard brigades from the ministry of health usually deem us check mark worthy. If you ask front line staff and residents how they’re doing? Umm, not so happy. They’re all mushy peas in a giant plastic bag, trying to live their best lives, yet feeling vaguely yucky.

Rant over. I’ll take a question. “If the institutional lifestyle sucks, why do we continue inflicting it on old people?”

I’m glad you asked. Apart from the tired excuse, “cuz it’s the way we dun it fer years”, the reasons come down to money, forces of demography and epidemiology, and culturally ingrained, collective thanatophobia. In other words, we’re all scared of death. But let’s start with money.

Plenty of people do well by nursing homes. My critical gaze rests on status-conscious administrators, CEOs, government policy makers and inspectors, health care gurus, and all the businesses that keep the proverbial lights on. According to corporate sloganeering, most nursing homes purport to be some version of “Home Sweet Home for Our Nation’s Living Treasures,” but honestly, who has an administrator in their den obsessing over a spread sheet of data on how often they move their bowels and whether they’re using too many incontinence pads? Who lets a nosy inspector park in the most convenient spot in their driveway so he can march through their home with a measuring tape to make sure their beds are the right height? These professionals earn six figure salaries to strut around like peacocks attired in business casual, making life miserable for people who do, or receive, the actual feeding and washing. Long-term care ain’t “home” my friends; it’s a cash cow prancing in a verdant field on hooves of gold.

Furthermore, economic analysts inform us that there’s more to consider on the financial front than its convenience as a safe, career climbing gym and provider of rich corporate dividends. Placing old people in institutionalized care frees their family members to participate in the labour market and take holidays too. After all, we need all engines firing to grow our planet-killing, happiness-destroying, metastatic tumour of an economy. Long term care equals sound economic policy when a nation’s GDP is a chief measure of its worth.

Besides, we happen to have a reliable source of raw material… umm… I mean “residents” for the “institutional industrial complex.” Nowadays, people usually live long lives, but they tend to be sick and infirm in their final years rather than dropping dead suddenly after brief, acute illnesses such as heart attacks as they did in the olden days… say till the 1970s. On average, elderly Canadians suffer through a decade of chronic illness before they die a sloowww death.[2] Meanwhile, post-millennial families tend to be small and they’re often geographically dispersed. Basically, we have a lot of white-haired, walker-pushing orphans without sons or daughters, nieces or nephews to look after them. Nursing homes serve as latter-day orphanages.

Which takes us to the fleshy, putrefying mastodon in the room. Yes, let’s talk about death. Western societies are remarkably squeamish about it and its precursor, old age. It suits us to sweep the portents of our own mortality into the tidy bins of long-term care. Many of us are like the legendary Prince Siddhartha in his palace, happily ignorant about the realities of getting old. Nursing homes shield us from the inconvenient, icky, highly theoretical possibility that we just might end up old and almost dead ourselves some day, perish that crazy notion. In other words, nursing homes are segregation facilities for those disruptive, delusion-smashing radicals who dare to flaunt the truth that life is finite, The Elderly.

Hark! I hear a voice saying, “Wait just a minute! I’m not naïve. I get reality. You just haven’t met my Uncle Philbert. He lives in a nursing home, thank Zeus, because he’s a handful. He wanders about, ransacking closets and throwing books into the aquarium. He’s so messy he has to wear a bib at mealtime. And don’t get me started on the diapers. Surely we need facilities for people like Uncle Philbert?”

Well, no, we don’t. Consider what happens when two hundred Uncle Philberts live under the same roof with roughly one care worker per fifteen Uncle Philberts. Some frustration? Perhaps a squabble over the ketchup bottle? Yup. Here’s a Not Fun Fact: the homicide rate among people in long-term care in Ontario is roughly quadruple that of Canada’s largest city, Toronto.[3] This is resident-on-resident violence. Uncle Philbert and his gang of ruffians deserve better.

And we can do better. There are people in the world who are revolutionizing elder care even as you read these words on this page. Here’s a three-step plan: let’s find these revolutionaries, peer over their shoulders, and copy what they’re doing. We can do it! Mr. Gorbachev- Tear down these walls!

Really, let’s tear down the walls of Pearly Gate Lodge. We can begin with a few, easy tasks such as holding great bonfires of institutional accoutrements such as uniforms, signage, and other insidious reminders to nursing home residents that they live in clinical facilities rather than real homes. Then we can lighten up on the nutty rules that make bureaucrats feel indispensable but ruin life for everyone else. Eventually we can reconfigure buildings into integrated, intergenerational apartments or house people in other ways that make sense. Step by step, we can end the Age of the Victorian Institution, once and for all.

 Endnotes

[1] Robyn Gibbard. “Sizing Up the Challenge: Meeting Demand for Long-Term Care in Canada.” Conference Board of Canada: November 2017.

[2] Tracey Bushnik, Michael Tjepkema, and Laurent Martel. “Health-Adjusted Life Expectancy in Canada.” Statistics Canada: April 2018. https://www150.statcan.gc.ca/n1/pub/82-003-x/2018004/article/54950-eng.htm

[3] Ontario Health Coalition. “Population Aging: Increased Incidence of Dementia and the Need for Long-Term Care Capacity Planning.” January 2019.