Contrary to what many believe, the tens of thousands of deaths of those living in long-term care (LTC) were no inevitable biological catastrophe. Their grieving, angry family members know better: they know the conditions that prematurely deprived their loved ones of the remainder of their lives. By December, just as vaccine distribution started, nearly 110,000 residents and staffers had died. The extra deaths among our elders constitute an appalling percentage of the 1.4 million Americans who were living in nursing homes before the pandemic. These older adults were of all races, genders, ethnicities, religions, and political persuasions. Pre-COVID-19, 12 percent were African American and 6 percent were Hispanic. Many people have also died in assisted living facilities, middle-class residences not currently inspected by the Centers for Medicare and Medicaid Services. The deaths in nursing facilities alone account for almost 40 percent of all the U.S. dead. If we can’t explain, correctly, why the nursing homes failed, we cannot prevent the next pandemic.
We may need to be reminded that people who choose congregate living—nursing and veteran’s homes, assisted living, and continuing-care retirement communities—are often quite healthy or staying in rehab only temporarily. Of course, whether other residents are chronically ill, disabled, frail, or living with some cognitive impairment, all should be able to look forward to living nicely, perhaps with some assistance—receiving help with activities of daily life such as showering and taking medications—as well as good meals, exercise classes, access to the outdoors, pleasant and helpful aides, conversation at mealtimes, and visits from loved ones. Many would have lived long lives in their new homes. All this was denied to those who sickened and died.
We don’t know the stories of the survivors from their own mouths—their fear, anguish at being neglected, anxiety as they listened to the news of mounting deaths among people like them, compassion for friends who were taken to hospitals and did not return. While journalists have interviewed family members and administrators, few have spoken to residents to find out how they felt and what they wanted. Aides were overworked, unprepared, and lacked protective equipment. Nurses were overextended. In one harrowing case at the Holyoke Soldier’s Home in Massachusetts, where union officials had long warned about conditions, staff were instructed by the home’s leadership to merge two dementia units, cramming residents with COVID-19 into wards with residents who were uninfected. At least seventy-six residents died. All across the country, if an aide held an old hand and spoke words of love from the family members whom residents could not see, that was the best death available.
The fact of the matter is this: No resident, however poor, feeble, or impaired, needed to die of COVID-19. Nor did those who work taking care of them. We don’t need to look far for proof. In a small, nonprofit, Baptist-run nursing home in Baltimore, Maryland, whose low-income residents were people of color, many with chronic conditions, not one person had even become infected as late as June 18, 2020. Everyone was protected by best practices, instituted early and with the greatest good will. The Rev. Dr. Derrick DeWitt, Sr. brought in PPE, more TVs for entertainment and social distancing, hired an extra activities coordinator, and provided food for employees so that they wouldn’t have to leave to buy lunch. As soon as possible, they instituted porch visits.
A study of New York State LTC facilities showed that where they were unionized, 30 percent fewer residents died. There were fewer infections. There were better masks and eye shields. Unionization often means better pay and infection-control policies. That means fewer aides need to hold two jobs, and there is less turnover. Nonprofits run by religious and social-service agencies have had much lower death rates than those run by for-profits.
Many among the extra dead were betrayed by government-run or supervised institutions that should have driven resources to them long before. Pre-coronavirus, Medicaid rates dropped too low to cover costs, and facilities kept wages too low and aides’ hours too short for them to provide sufficient care. Many facilities failed state tests for adequate infection preventions—failures ignored by the agencies responsible for monitoring them. In 2017, the Trump administration reduced the fines against nursing homes for harming patients, even when this harm resulted in a resident’s death, reversing guidelines put in place under President Obama.
A Tragedy Foretold
Ageism, combined with ableism, “dementism” (the fear of Alzheimer’s), sexism, racism, and classism, made the apathy leading to eldercide possible—and almost inevitable. To recognize the ongoing neglect and oblivion means acknowledging its deep-seated causes, including indifference at growing inequality and the health hazards of poverty. CDC data shows that 70 percent of Americans between the ages of 55–64 (before old age, before Medicare) have at least one chronic illness, and 37 percent have two. Social Security is inadequate for many who worked hard. People in the middle class often become poorer as they grow older, particularly given the midlife job losses that have characterized our economy for forty years. Long-term care was removed from Obamacare. In the assisted living communities, where fewer died, people had their own rooms. In the nursing and veterans’ facilities, poverty crowded them into single rooms or wards. The poor become even more powerless in later life.
Indifference is inexcusable—and historical. It goes back to the stingy nineteenth-century “poorhouses” for “the old and indigent.” In the twentieth century, nursing homes picked up the ugly connotations that persist, making them still seem frightening and to be avoided at all costs. They were stereotyped as warehouses for sick old women whose wits were gone, living in places that “wouldn’t pass the smell test.”
To America’s shame, LTC facilities were all too often cruel institutions that mistreated their residents. Some had no nurses. Training in geriatrics was lacking. Administrative oversight was careless. People who needed help with showering were not always helped in a timely fashion—thus the smell that some observers blamed on the victims rather than those who should have been responsible for helping them. Food could be bad. People were restrained and overmedicated in ways that would drive anybody crazy. In the early 1970s, my dear grandfather, an immigrant born in 1880, hale in his nineties but suffering from arteriosclerosis and suddenly separated from his wife, was over-sedated into incoherence. In some facilities older adults were actually restrained, sometimes in ways that prevented them from scratching an itch. People were left alone in wheelchairs in empty corridors to be more easily monitored. May Sarton’s novel, As We Are Now, published in 1973, represented some of the feelings that eventually drove reform. Her protagonist, a retired schoolteacher, sets her nursing home on fire in frustration and rage at neglect, condescension, and meanness.
It took until 1987 for Congress to pass the Nursing Home Reform Act, which set improvement standards. The obvious changes—minimal staffing requirements, training for aides, mandated resident assessments, and annual reviews—had an impact that I was able to witness in one facility. In the 2000s, a charming older friend of mine in her nineties lived in a nursing facility for several years. The building was well-lit and neatly arranged. No condition was abusive or lethal. It lacked the amenities of expensive assisted-living communities: there were two people to a single room, few activities, and the food was mediocre. It was not always as clean as my friend had kept her own home. But when I called to hear her marvelous laugh, she never complained.
Yet the catastrophe in the LTC facilities since February 2020 shows that the system failed abysmally all across the United States. Oversight regulations were patchy, differing from state to reluctant state. Some states refused Medicaid reimbursement and underfunded their share. Enforcement was dismal. And despite the vast variety of characters and experiences of older adults, the image of old people as waiting to die in institutions lingered. Even before the pandemic, merely living into the “Fourth Age”—becoming very old or frail—was seen by some as abjectly near-to-death. In Ending Ageism, or How Not to Shoot Old People, I concluded that so-called euthanasia was deemed legally understandable when it referred to dependent old women shot by their husbands. A study in Florida, published in the American Journal of Geriatric Psychiatry, showed that such killings were happening twice a month. Prosecutors rarely indicted the husbands for what they considered “mercy killings,” nor would juries convict.
Lacking stories, the lives of the individual people in LTC who died of COVID-19 have been squeezed down into naked statistics. Astonishingly, state-issued data mostly fail to distinguish among them: we can’t learn how many were women or men, people of color or white, or their income levels. To the general public, they remain a faceless, voiceless, genderless mass. And they are still dying disproportionately.
This eldercide has yet to be acknowledged as such—the abandonment of old people to exposure and death on a mass scale. People may know that so many lives of older adults were lost without realizing that the outcome could have been otherwise, and without comprehending the deathly injustice. We know the survivors suffer from isolation and boredom. In addition, trauma may arise from being identified as supremely at-risk. Analyzing previous outbreaks such as SARS, researchers found that being singled out heightens anxiety or creates survivors’ guilt. Residents of LTC facilities, spatially excluded from society, have been treated over and over as if they were not quite human.
“The Ugly Stepchild”
When pundits describe what a Biden administration would need to do to restore our healthcare system, even now in the COVID-19 era, some forget the grave necessity of improving care in nursing and veterans’ facilities and assisted-living retirement communities. As a UMass Boston gerontologist, Elizabeth Dugan, told the Boston Globe in October, “We don’t [even] think of nursing homes as part of the health care system. We could have done better. We should have done better.” Writing in the Journals of Gerontology, Edward Alan Miller et al. bluntly observe, “Long-term care is the ugly stepchild of health policy. It is widely understood that . . . the sector is inadequately financed and ineffectively regulated.”
When the Trump-formed Coronavirus Commission on Safety and Quality in Nursing Homes released its report in September, the report merely “urged” these facilities to do right. Enforcement mechanisms—the teeth in any reform—were not added, according to a dissent from one member of the commission, Eric Carlson, a lawyer for Justice in Aging, an organization centered on alleviating poverty among seniors and suing for better conditions. The industry’s lobby (which has long attempted to degrade quality-of-care standards and is now trying to prevent federal and state liability suits) won this round. According to a December AARP report, immunity from liability has been granted in at least twenty states.
This, briefly, is the long lethal background of the historic American eldercide of 2020. None of this—not the grief of family members nor the tragedy of long neglect and underfunding—has provoked national outrage. What good outcomes can the next phase bring as long as there is no proper understanding of age bias and thus no proper mourning, or even regret?
First, we must realize that many deaths were unnatural and unnecessary, caused by ageist neglect or violent prejudice. Labels lumping older adults together distract the general public from the benefits of longevity and hide the resilience, common sense, and values older adults possess.
Will having a vaccine suddenly teach our society any of this? The decision made by public-health leaders and the states to prioritize LTC residents by giving them vaccinations right after frontline medical personnel begins to provide implicit redress. Still, there may be pushback from those in the spring and summer who said that “only old people die” of the disease, and that therefore it doesn’t matter. Giving residents of LTC facilities vaccine priority is ethical and just, treating the survivors not only as vulnerable but as precious. Being considered human is a status conferred or withheld by society. Our culture has to restore the image of people in later life who need a little help—as fully human beings who have life ahead of us and an equal right to enjoy it.
With consciousness and conscience could come other reckonings, including criminal charges, class action suits, guilt acknowledged, remorse, apologies, perhaps even a special monument to these dead—and concrete federal plans for rescuing those who will need long-term care in the future. It is up to society to pressure Congress to adequately fund and tightly regulate the places where many of us—and most often women with the least income—will pass years of our lives. And reform of oversight should include assisted living facilities.
The tens of thousands of lost selves were the country’s matriarchs and patriarchs, the result of America’s once-proud ability to achieve longevity. For those closer to their hearts, they were dear spouses, parents, aunts and uncles, grandparents, mentors, coaches, people who comforted us and guided us by their presence in our lives. Let us grieve the magnitude of that loss and find ways to prove that in our country the lives of elders do matter. Some good must come out of terrible national ignorance and disgrace.
Margaret Morganroth Gullette is the author, most recently, of the prize-winning Ending Ageism, or How Not to Shoot Old People (2017) and is a Resident Scholar at the Women’s Studies Research Center, Brandeis. This essay is excerpted from her work-in-progress, American Eldercide: How It Happened, How to Prevent It Next Time.