Based on my discussions with other authors, most of us wish we had our book manuscripts back almost immediately after publication. There was almost always at least one significant thing that we missed, or something we could have done better, that just continues to gnaw at us.
In my own case, with my last book, Resisting Throwaway Culture, it eats away at me that I failed to address nursing homes. And the fact that I failed to address them—in a book that was tailor-made to do so—actually highlights just how good throwaway culture is at keeping the vulnerable populations it discards hidden from public scrutiny.
To be sure, I did talk about the elderly as a throwaway population, and quoted Pope Francis in so doing:
When the elderly are tossed aside, when the elderly are isolated and sometimes fade away due to a lack of care, it is an awful sign! . . . We throw away the elderly, behind which are attitudes of hidden euthanasia. They aren’t needed and what isn’t needed gets thrown away. What doesn’t produce is discarded.
Writing about this issue in Amoris Laetitia, Francis began by invoking Psalm 71, “Do not cast me off in the time of old age; forsake me not when my strength is spent,” and then went on to identify this with the plea of today’s elderly “who fear being forgotten and rejected.” He insists that, just “as God asks us to be his means of hearing the cry of the poor, so too he wants us to hear the cry of the elderly.”
This was in the context of a discussion about euthanasia—focused as it is on the sick, the elderly, the disabled, and others who do not fit into our consumerist model of who matters in the culture—is a classic example of throwaway culture. I argued that unless we resist it with a counterculture of encounter, the killings of these populations will continue to grow in number and acceptance.
This has certainly been the case in the Netherlands, a country in which more than one in twenty people die via physician-assisted suicide or euthanasia and which sees powerful political movements to legalize these practices for those who declare that they are old and “tired of life.” This is a country that saw a physician euthanize a woman with dementia despite the patient telling her doctor three different times that she didn’t want to be killed. Ignoring these requests, the doctor stealthily put a deadly drug in her patient’s coffee—and was then cleared of murder by the Dutch high court.
This killing of a disabled person occurred where most people with dementia live out their final days in the developed West: a nursing home. Indeed, 50 percent of all patients in US nursing homes have some kind of dementia. In Resisting Throwaway Culture, I even suggest that as part of a counterculture of encounter we “consider careers and intense service projects at the service of the elderly, mentally ill (especially with dementia), disabled, and terminally ill. Given levels of depopulation in the developed West we are on the verge of having way more people in need of this care than family members and others capable of caring for them.” Yet I never mention nursing homes or other long-term-care facilities. How could that be?
Nursing homes—again, like many institutions doing the bidding of throwaway culture—hide in plain sight. We kind of all know they exist, and that many, many people live out their final years and months in these institutions, but they aren’t talked about very much. We would prefer not to be reminded of them. And given how desperately lonely many residents of these institutions are, it appears that even their family members would prefer them out of sight and out of mind.
As I wrote in a piece on nursing homes for the New York Times early in the pandemic, one of the few silver linings of COVID has been that it has forced us to look at how we treat the elderly and disabled in nursing homes. Our plausible deniability of how we treat this throwaway population is gone. It took between 40 and 50 percent of all COVD-related deaths being residents of nursing homes and other long-term-care facilities, but our cultural practices in this regard (practices that often perplex immigrants from outside of the developed West) finally got the critical spotlight they deserved.
One of the few silver linings of COVID has been that it has forced us to look at how we treat the elderly and disabled in nursing homes. Our plausible deniability of how we treat this throwaway population is gone.
First, and most obvious, is the clear fact that (despite our knowing that their populations were by the far the most at risk) we simply didn’t care about nursing homes during the pandemic. Limited personal protective equipment, staffing, and training went to hospitals, and nursing homes—already at a disadvantage in these areas—were ignored.
Well, that’s not exactly true; nursing homes weren’t ignored. In states like New York, New Jersey, Michigan, Minnesota, and California, decision-makers (including, most notoriously, New York State’s Andrew Cuomo) intentionally dumped COVID-19-positive patients back into nursing homes in order to—you guessed it—make more space for the rest of us in hospitals. You know, the ones who count. Rationing medical resources away from the elderly and disabled is bad enough in a more typical context, but doing it this way sparked uncontrolled wildfires of infection and death.
In Belgium (another European country with an established tradition of assisted suicide), their response to the pandemic included paramedics and hospitals flatly denying care to nursing home residents, even as many hospital beds sat unused. At the beginning of their outbreak nearly two-thirds of nursing home residents who died of COVID-19 did so in hospitals. But at the peak of the Belgian pandemic, 86 percent died in the nursing home itself, never getting a chance at being saved. As a result, Belgium developed, for a time, the highest COVID-19 death rate in the world.
Sweden, famous for not locking down during the pandemic, also had terrible practices when it came to nursing homes. Health authorities there received numerous complaints from people whose elderly relatives who, once suspected of having COVID-19, were given morphine and denied supplementary oxygen, fluids, and nutrition. One nurse said that she felt like she had to lie to patients who asked her what she was giving him. “People suffocated, it was horrible to watch,” she said. “Many died before their time. It was very, very difficult.”
Something similar happened in Australia. Nursing home residents there suspected of COVID-19 were also refused hospital admission, and those who they thought were at risk of wandering were simply sedated, using morphine or midazolam. When nursing homes and the primary care physicians of these residents called the local hospital they were told that there were no beds for “those type of people at this time.”
And this is not just a problem overseas. In reporting for this piece I spoke with a certified nursing assistant who started work in a nursing home during the pandemic here in the United States, and she (let’s call her “Annella”) had very similar stories to tell. “No one I’ve seen here gets palliative care or hospice,” Annella said. “They all simply get dehydrated to death. We’re told in our training that it is a good thing.”
In her experience, most doctors stay away from her facility and let an understaffed, underpaid nursing and nursing assistant crew (often without the necessary personal protective equipment) care for patients with incredible needs. Desperately in need of the care of a podiatrist, many of the patients under her facility’s care have mangled, misshapen feet and toes due to lack of proper care. They develop deadly pressure injuries due to lack of turning. They sit with soiled clothes for hours. Sometimes they don’t get even get fed.
And they are desperately, mortally lonely.
Nursing home facilities were already terrible places of isolation before the pandemic; after it, deaths of despair have gone into hyperdrive as these homes locked down and residents were strictly isolated. Annella has been a crusader on behalf of her patients and their fundamental human need for social interaction, particularly on the dementia floor where she worked.
She’s fighting a difficult battle. Both systemic and explicit ableism loom in the medical field in dramatic ways, with physicians consistently rating the quality of life of their disabled patients worse than the patients do themselves.
This kind of ableism was on full display in the case of Michael Hickson, a middle-aged, disabled African American man who got COVID-19 while in a nursing home and later died in a hospital in Austin, Texas. Except he didn’t die of COVID-19 alone; he also died of neglect. He died of something his wife Melissa described as a murder.
His medical team decided not to treat or feed him for six days until he was dead. Happily, at least for those of us who want this kind of ableism exposed, Melissa (legally) recorded the conversation she had with the doctor who explained the reason for the killing.
While both of them agreed that Michael should not be intubated, the recording begins with Melissa clearly explaining that she still wants Michael to be treated aggressively. His doctor, however, claims that aggressive treatment wouldn’t “help him improve” and says, “Right now, his quality of life . . . he doesn’t have much of one.”
Melissa then says, “What do you mean? Because he’s paralyzed with a brain injury, he doesn’t have quality of life?”
Michael’s doctor, the one who is charged with his most intimate and important physical care, simply says, “Correct.”
Somehow Melissa doesn’t lose control of her emotions at this point—and she does get the doctor to admit that three of his patients in Michael’s situation had survived before. But he notes ominously that her husband’s case “doesn’t fit those three” cases.
Her husband’s “quality of life is different from theirs,” Michael’s doctor explains. The three patients he had who survived in this kind of situation “were walking and talking people.”
Melissa tries to make the case that her husband has value despite his disability, but the doctor had had enough and says, “I don’t mean to be frank or abrasive, but at this point, we are going to do what we feel is best for him along with the state, and this is what we decided.”
Both systemic and explicit ableism loom in the medical field in dramatic ways, with physicians consistently rating the quality of life of their disabled patients worse than the patients do themselves.
What the medical communities decide about people with disabilities, and particularly dementia, is riddled with rank bigotry, an inability to see the disabled as persons with value. We only have correlation and not causation—at least at this point—but it is worth pointing out that more than half of those who have died in nursing homes are likely to have dementia. One factor that may confound this kind of analysis is that dementia seems to make one more at risk of serious complications and death from COVID-19. Indeed, the CDC has added dementia to the list of conditions that put one at more risk.
But it would be strange indeed if treatment of COVID-19 somehow avoided the effects of the ableism in the medical field. The New York Times, for instance, told the story of patients with dementia being “dumped like trash” from nursing homes into unregulated boarding houses. The reason? They make more money off taking patients with COVID-19 and wanted to use the space for that. One result of this policy was that a patient with dementia who was dumped was found later wandering the streets of Los Angeles.
Not every nursing home, of course, is run with the values highlighted above. Many nursing homes are, in fact, run very well. But many are not, particularly when they don’t have resources. And how long will it be before those facing an unspeakably lonely death of despair in an underfunded and understaffed nursing home ask for assisted suicide instead? There is already growing national pressure to legalize the practice widely across the country. If we don’t do something to fundamentally change how to do elder care in this country, widespread legalization of euthanasia for those who are “tired of life” is simply inevitable.
But there is an alternative to this logical terminus of throwaway culture. A counterculture of encounter—that is, one that promotes and supports genuine human interaction—could and should be at the heart of the ways we fundamentally treat the elderly.
There is an alternative to this logical terminus of throwaway culture. A counterculture of encounter—that is, one that promotes and supports genuine human interaction—could and should be at the heart of the ways we fundamentally treat the elderly.
It should start with the kinds of people we hire in nursing homes. We must change a health-care culture in which this kind of care is seen as “the bottom of the barrel” in terms of prestige for those who provide it. We must be willing to pay to hire professionals like Annella who are willing to treat this population like human beings.
Consider the beautiful humanity she acknowledged and fostered in this story she send me via email:
I think “Rebecca” was one of my favorites. The first time I met her, she was on the fourth, rehab, just had come back from the hospital, and the fourth floor was packed. Everyone was coming in from the hospital, and everyone was on droplet precautions so that meant we had to gown and mask up before even entering their rooms—only there weren’t enough gowns and we only had one mask for a week. Lights were going off constantly and there was only one other CNA with me. We did nothing but run all night.
The Rehab floor isn’t for residents. There’s nothing homey about it, it’s more like a hotel, except with ports for tubes coming out of the walls, and hospital beds and bathrooms. It’s one, long hallway, and “Rebecca” was in the second to last room.
She had been a local photographer, a professional, and she was beautiful. You could tell that she used to carry herself gracefully. But when I met her, she was in a hospital gown with an IV attached to her and she had soaked through the diaper, her pressure injury wound pad was saturated along with the bed, and she was crying.
I don’t know how long she’d been left there by herself, but it had been a long time. The look on her face was of lost hope.
I think that was the first time I got really angry at the injustice of all of it.
Changing patients is like a choreographed dance. You gather your supplies, you put the bed up high, and you do everything in halves—you strip half of the bed, roll them away from you, tuck everything tight under them, roll them back to you, and the same with the diapers. Roll, roll, roll. It takes so much out of them, when they have so little energy to spare that it’s exhausting. But I got her cleaned up, dry, we washed her face, put cream on her arms and legs, got fresh sheets on, and I got her covered up with fresh sheets and a blanket. Pretty soon Rebecca was as snug as a bug in a rug, fast asleep with a very different look on her face.
I nearly cried after reading this, but Annella rightly insisted that we shouldn’t consider this to be a big deal. We shouldn’t be moved by just treating our elders like they are full human beings. But we often are. Because we often don’t.
What else can we do to foster a culture of encounter in these spaces?
Well, I argued in a series of articles early in the pandemic that we ought to make firm commitments—as individuals, families, communities, and as a country—to care for our beloved elderly loved ones at home. We should offer adult day cares with communal activities (along with nursing help and various therapies) during the day, but we should establish a culture where they can come home to home-cooked meals and time with their children and grandchildren as well. For families without the resources to do this, we must provide help—help from networks of local institutions and churches, as well as state and federal programs.
Attempts to resist our throwaway culture by creating a culture of encounter this way have support across very different constituencies. Pro-lifers are for it. Social justice activists are for it. The families themselves are for it. Even small-government conservatives are for it (if they take the time to learn about it) because it is actually far less expensive to pay for in-home and community-based care than it is for even bad institutional care.
Despite this, there are entrenched interests—including the shareholders of the handful of large corporations that now dominate elder care in the United States—who will fight off change in favor of the status quo.
But we must push back that much harder.
Perhaps we can take our cue from Annella who, while working the overnight shift on the dementia floor, was confronted by a veteran charge nurse who bullied, yelled, and scared the elderly patients on her floor so thoroughly that they cowered in their rooms overnight, afraid to ask for a drink, for help to the bathroom, or to be changed from their urine-soaked briefs. As she watched the charge nurse grab a patient’s wheelchair and jerk it around to force the woman to bed, she told her to stop. The patient was entitled to go to bed when she wanted, how she wanted; to be treated like an honored elder, like a person.
This charge nurse had been around a long time. She had the power she had, in part, because no one else would step up and do the job. But there are others—and Annella is one of them—who oppose this abuse, and who are willing to do this work of care and encounter well.
Do we have the courage (and will) to do the same?
