Jillian Horton, MD, is a general internist, writer and medical educator. Her memoir about medical education, burnout and compassion in clinical care, We Are All Perfectly Fine, will be published in February, 2021.
The other day I was cleaning out my filing cabinet and came across a copy of my application to medical school. I lingered over this quote from my personal essay:
“One of the things I have witnessed through my work experience is how shamefully we warehouse our elderly, relegating them to conditions in which no person capable of advocating for themselves would choose to live.”
How did I know this, back in 1996? I knew because I’d spent two summers working in a nursing home. The senior-care conditions that have come as a shock to so many politicians this spring were painfully obvious to my 21-year-old self.
By many meaningful standards, the home where I worked was a good one. It was government-owned and, unlike several of its local for-profit competitors, it was new and bright. It boasted a sunlit atrium, private or semi-private rooms, large communal spaces and food a person might actually be inclined to eat. A large activities team – which included me – planned music performances, crafts, games, outings and holiday events, from ice cream socials to pie-baking contests.
But nobody, even in the throes of dementia, could mistake the institution for the place they used to call “home.” The corridors were made of huge concrete bricks and resembled, in some ways, a high school or a prison. The lights were fluorescent, the bathrooms industrial. The hospital beds, with their metallic railings, didn’t look cozy or comfortable. The rooms were smaller than a suite in even the most average hotel, leaving little space for the accumulated relics and treasures of a long life.
On the last Friday of every month, a long convoy of wheelchairs and walkers made a painstaking journey to the cavernous auditorium, where a large, store-bought cake was cut as the staff sang earnestly:
“Happy birthday to you/Happy birthday to you/Happy birthday dear resident/Happy birthday to you.”
I had two main tasks at the nursing home. One was what I still jokingly call my musical residency. I rotated daily between the five floors of the building to perform “concerts,” singing and sight-reading from books filled with “the oldies.” I still feel a rush of emotion when I think of all those hopeful, wrinkled faces lined up in front of the piano. I came to love those songbooks and those people. From It’s a Long Way to Tipperary to Bluebird of Happiness, we were all transported to another time and place. Those were the best concerts I ever gave. I doubt any note I ever play again will mean more to anyone.
But another thing stayed with me: the feeling that when I closed the lid on the piano keys, we were back in an institution. The television reverted to The Price is Right or Days of Our Lives. Messages crackled over the intercom: the time, the date or an announcement that there would be beef stroganoff for supper. The long, humiliating queue for the toilet resumed.
I was lucky that I was able to perform music for the residents, and many others who worked there also brought comfort and joy to the home. But these workers also had many other jobs to perform in their hospital-grade scrubs. They were hired to groom and bathe and shower residents, and dispense pills and spoon beef stroganoff into the mouths of those who couldn’t feed themselves. Many of the staff did these things with endless love. But their days were jam-packed with hard, physical labour – the lifting of an endless stream of bodies, the wiping of bottoms and the changing of briefs, and the need to chart and document all of these events in great detail. That concrete building with 400 residents, and its three large, daily shifts of nurses, aides and clerks, was not really a home. It was an enterprise.
I still remember one lady, Betty, just relocated from her own home, still struggling with the loss of her tiny apartment.
“My favorite is this,” she said wryly, leaning over and pulling aside her curtains, where giant dollies full of garbage and laundry were passing by. “And guess what else I get to see?” I guessed, all right. Stretchers, covered with sheets, loaded into ambulances, pulling away silently from the curb.
I’ll never forget what she called it: the previews.
Twenty-five years later, I still remember almost all of the residents’ names. I remember the things they told me, the shadows of private jokes between us, the choir I put together and conducted, the repertoire, the rehearsals taken seriously by all of us, as if we were headed to Carnegie Hall. But none of that could compensate for that place’s most intrinsic flaw: It was an institution.
My experiences with the private system, some arising from my personal life, have been far worse. There, the reflexive tendency is to prioritize profit margins over the simple things that often make life feel like it’s worth living. The impetus is to serve food the administrators would never choose to eat; to lay off the student who plays the piano for $6.50 an hour; to justify the lowest possible wages, forcing staff – mostly women – to migrate to other better-paying jobs as soon as they become available, disrupting relationships and continuity of care; to stick two or more people together in a room, maximizing the value of that precious single toilet; to cut back on benefits and resident-to-staff ratios, resulting in more bedsores and briefs that stay soiled indefinitely; to let the paint chip and peel; to administer more medication for “behavioural problems” when staff members can’t properly tend to the needs of the distressed or agitated; to send residents to hospitals in ambulances at the first hint of a problem, because it is expensive and challenging to manage higher needs. The bottom line is the only one that no one is willing to cross.
We’re past the previews now – we’ve seen how thin the margins are, how badly this story can end. As any in-patient physician will tell you, the story has been ending that way for as long as most of us have been doctors. And if you’ve ever had a family member in an institution, you know all this, too, unless you have been lucky, or are unable to admit that this is not the way that you would ever choose to live.
From Orchard Villa in Pickering, Ont., to Laurendeau in Montreal, an old truth is back out in the open. Yes, the public nursing-home system is better than the private one. But it is hard to argue that either model is personal, or anything akin to home. Half my life later, I agree with my twentysomething self: We are still failing our elders.
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