Editor’s Note: Out of the 600,000 older adults in the U.S. who have died of COVID-19 so far, a tragically disproportionate number were residents of government-sponsored nursing facilities. The essay below, which offers keen insights into how this happened and how it could have been prevented, is adapted from “American Eldercide,” an article that first ran in Dissent, and will soon appear in The Long Year.
Contrary to what many believe, the tens of thousands of deaths of people living in nursing and veterans’ facilities 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 2020, just as vaccine distribution started, nearly 110,000 residents had died.
The extra deaths among elders constitute an appalling percentage of the diverse 1.4 million Americans who were living in nursing facilities before the pandemic. Many people have also died in assisted living facilities, middle-class residences not currently inspected by the Centers for Medicare & Medicaid Services (CMS). Until other deaths soared toward 500,000 over the winter of 2020–2021, the deaths in nursing and veterans’ facilities alone accounted for almost 40 percent of all the U.S. dead. If we can’t explain why these care “homes” failed the people they were responsible for protecting, we cannot finally reform our eldercare system.
We may need to be reminded that people who choose congregate living in nursing and veteran’s homes include men and women of all races and ethnicities. Some are quite healthy or staying in rehab only temporarily. Other residents are chronically ill, disabled, frail, or living with some level of cognitive impairment. They may have little in common excepting their powerlessness to avert their fate. All of them 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 longer lives in these new homes. All this was denied to those who sickened and died.
We don’t know enough stories of the nursing home survivors from their own mouths—their 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, or stubborn determination to survive. While journalists have interviewed family members and administrators, few have spoken to residents to find out how they felt and what they observed. Aides were overworked, unprepared, and lacked protective equipment. Nurses were overextended. In one harrowing case at the Soldier’s Home in Holyoke, Mass., 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 76 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.
‘No resident, however poor, feeble, or impaired, needed to die of COVID-19.’
The fact of the matter is this: No resident, however poor, feeble, or impaired, needed to die of COVID-19. We don’t need to look far for proof. In a small, nonprofit, Baptist-run nursing home in Baltimore, Md., 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. Derrick DeWitt Sr., a reverend and the CFO of the nursing home, brought in personal protective equipment, 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. They already had a full-time infection-control nurse on staff before the pandemic.
Similar procedures led to lower mortality rates in other residences. A study of New York State facilities showed that 30 percent fewer residents died in unionized than in nonunionized facilities. 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. There is some evidence that nonprofits run by religious and social-service agencies have had 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 to growing inequality and the health hazards of poverty. Data from the Centers for Disease Control show that 70 percent of Americans between the ages of 55 and 64 (before old age, before access to 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 40 years. A funding system for 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, cost cutting and disregard of the need for a room of one’s own crowded the residents into double rooms or wards. The poor become even more powerless in later life.
The catastrophe in the nursing and veterans’ 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 of regulations was dismal. And despite the vast variety of characters and experiences of older adults, the perception lingers, of old women waiting to die in institutions “that wouldn’t pass the smell test.”
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 was forced to conclude 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 residents who died of COVID-19 have been squeezed down into naked statistics, marred by CMS undercounting and some states’ shifty shenanigans to hide the real toll. Astonishingly, state-issued data mostly fail to distinguish among them: we can’t learn how many were women or men, or people of color or white. To the general public, they remain a faceless, voiceless, genderless mass. And they are still dying at disproportionate rates.
This eldercide has yet to be acknowledged as such—the abandonment of residents to exposure and death on a mass scale. People may know that “so many lives” of these people were lost without realizing that the outcome could have been otherwise, and without comprehending the deathly injustice. We know the survivors suffered from isolation and boredom; many may now suffer from Long COVID. In addition, trauma may arise from being identified as supremely at-risk or from survivors’ guilt. Residents of government 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 public-healthcare system, even in the COVID-19 era some forget the grave necessity of improving care for those who now end up in nursing and veterans’ facilities. As a UMass Boston gerontologist, Elizabeth Dugan, told The Boston Globe in October 2020, “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.”
Eldercide is ‘the abandonment of residents to exposure and death on a mass scale.’
The report issued by the Trump-formed Coronavirus Commission on Safety and Quality in Nursing Homes in September 2020 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. 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 that round. According to a December AARP report, immunity from liability has been granted in at least 20 states.
This, briefly, is the long lethal background of the historic American eldercide. None of this—not the grief of family members nor the tragedy of neglect and underfunding—has provoked national outrage. What good outcomes can the next phase bring as long as there is no proper understanding of ageist, ableist 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 other 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 tend to possess, even after lives of deprivation.
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 long into the future from those who wanted the economy “opened” sooner and said that “only old people die” of the disease. Some may believe that 138,000+ deaths in nursing facilities do not matter much. 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, 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. Or provide alternatives, so more of us may grow older at home. 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 this terrible national ignorance and disgrace.
Margaret Morganroth Gullette is the author 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. She is writing a book entitled “American Eldercide: How It Happened, How To Prevent It.”