My grandmother’s grandmother, as family lore has it, died in the flu pandemic of 1918. This month, my own grandmother was killed by another disease for the history books.
My Meemaw, a 94-year-old former nurse who could name every player on the Minnesota Twins, sewed dresses for my American Girl doll, and kept careful count of the juncos at her bird feeder, died on April 18 of complications related to the novel coronavirus. She lived alone in an assisted-living facility in Minnesota, alongside dozens of other elderly midwesterners with Scandinavian-sounding surnames. When the coronavirus hit, it hit hard. By mid-April, more than half the facility’s staff and nearly half of its residents were infected. Meemaw was only the second person from her facility to die of COVID-19, but she might not be the last.
An estimated 70 percent of coronavirus deaths in Minnesota have been linked to long-term-care facilities. In at least six states, these fatalities account for half of all COVID-19 deaths, and according to the World Health Organization, half of all coronavirus fatalities in Europe have been traced to nursing homes too. Some of this mortality is linked to long-term-care facilities that are shoddily run or that violate health standards. But most of them are doing the best they can with what they have. And they don’t have much.
The frail residents at these facilities are obviously especially susceptible to a lethal virus. But structural weaknesses endemic to America’s long-term-care system—underinvestment, understaffing, and the use of low-wage employees—have made a dangerous situation much more deadly, health-policy experts say. So has the government’s response to the virus: The initial epicenter of the pandemic in the United States was a nursing home outside Seattle, where at least 40 residents have died of COVID-19. Yet following that outbreak, health officials did not prioritize the residents and staff of such facilities in the rest of the country to receive lifesaving testing and equipment.
“Nursing-home residents aren’t getting half of our resources or half of our attention, yet they account for roughly half the deaths,” David Grabowski, a health-care-policy professor at Harvard Medical School, told me. This, he said, reveals—or maybe reinforces—a devastating truism about American society: “We don’t value their lives as much as other people’s.”
Jim Wright, the medical director of a publicly funded nursing home in Virginia, was more blunt. “We’re literally killing elders now, through our lack of funding,” he told me. “It’s not metaphorical.”
Wright’s facility, Canterbury Rehabilitation and Healthcare Center in Richmond, had its first suspected case of the coronavirus on March 11, well before states and cities nationwide shut down. The sick resident, a man living on a floor with 50 other people, was immediately quarantined in a special wing of the facility. In the days that followed, 131 other residents would test positive for COVID-19.
“They were just dropping so fast; we felt helpless,” Nina Gwathney, a licensed practical nurse who has worked at Canterbury since 1982, told me. Overwhelmed employees soon began to quit in droves, causing a critical staffing shortage, and Gwathney spent her days running back and forth between rooms—taking temperatures, passing out Tylenol, fielding phone calls from worried family members. “We were getting overworked,” she said. “We were walking around the building just literally crying.”
By the first week of April, Canterbury was able to beef up staffing by recruiting through an outside agency. But the damage had already been done: More than a dozen residents in Gwathney’s unit were dead. From March 11 until the outbreak calmed down earlier this month, Canterbury lost 49 residents to the virus—a 37 percent mortality rate.
Adequate funding really matters in this crisis: It can’t prevent the virus from entering a facility, but it can determine the staff’s ability to respond, Wright told me. “If you’re looking for the perfect scenario for a virus to pass quickly through a population and kill a lot of them, look no further than a publicly funded nursing home.” Most of Canterbury’s residents, as is the case in many nursing homes, pay through Medicaid, which provides the facilities with limited reimbursement. That underfunding means that many residents live in cramped quarters, forced to share bedrooms and bathrooms, which can make limiting the spread of infection difficult. (In October, the Richmond facility was cited for violating infection-control protocols. The center came under new ownership earlier this year, and a survey conducted in February, before the COVID-19 outbreak hit, reportedly found no deficiencies.)
Across the country, long-term-care workers have been forced to ration and reuse masks and other personal protective equipment, just as hospital workers have. Wright said his own facility “was simply unable to get PPE” because many of those resources were diverted to hospitals. In mid-March, several Virginia facilities reported receiving very limited supplies from the state; FEMA documents later showed that Virginia was not receiving the supplies it had requested from the federal government.
But the most consequential deficiency of America’s long-term-care system could be that the country’s most vulnerable people are being cared for by workers who are themselves extremely vulnerable—a dynamic that has contributed to the rapid spread of the virus.
The Centers for Medicare and Medicaid Services issued guidance on March 13, the same day that President Donald Trump declared a national emergency, urging facilities to restrict visitors, cancel group activities, and screen residents and employees for fevers. But staff members could still unwittingly bring the virus indoors. Certified nursing assistants and personal-care aides, whose jobs involve close-contact tasks like bathing and feeding, are some of the lowest-paid health-care workers in America. Many hold multiple jobs to make ends meet, which increases both their exposure to the virus and the chances that they’ll pass it to a resident. The majority of these workers are women, and many are immigrants who live in multigenerational homes, where they care for older family members too, says Mary Naylor, a gerontology professor at the University of Pennsylvania School of Nursing. “This is a story about a lot of heroines going to work every day, doing the most intimate, most complex tasks to support the neediest of those among us.”
A handful of nursing homes have recently made the news for mishandling the coronavirus crisis. Federal inspectors have determined that at least nine facilities, including the one near Seattle, have put their residents in “immediate jeopardy” by failing to uphold basic infection-prevention measures, according to a ProPublica analysis. These are undoubtedly failures, the experts I spoke with acknowledge. But “this is less about a few bad apples and more about system-level problems,” Grabowski told me. “It’s a lot more about the broad policy decisions we’ve made.”
Hospital and emergency-room staff, since the beginning of the pandemic, have received a rush of homemade-mask donations, food deliveries and flower arrangements, and offers to babysit their kids. But comparatively little public attention has been paid to staff at long-term-care facilities. As at Canterbury, some employees are quitting because of the stress, and the ones who stay are working extra hours or double shifts. To help ease the burden on these workers—and to dissuade them from taking extra jobs—some states have agreed to provide them with hazard pay. Congressional Democrats, too, are pushing for them to receive emergency pay.
“It’s been great the way we’ve all rallied around hospital workers,” Grabowski said. “Where is the outpouring for the staff of nursing homes? Where are the meals? The child care?”
Even before the pandemic reached the United States, outbreaks in other countries suggested two things: Elderly people had the highest fatality rate, and asymptomatic people could likely spread the virus. Yet until this week, the Centers for Disease Control and Prevention listed only hospital patients and symptomatic health-care workers as “Priority 1” for testing. Symptomatic people living in long-term-care facilities were given “Priority 2” status; asymptomatic health-care workers had third-tier priority; and asymptomatic people were labeled “non-priority.”
A spokesperson for the Department of Health and Human Services, which oversees the CDC, told me that the agency never intended to imply that any group’s need for testing was less important. “Testing residents in long-term-care facilities who are symptomatic has always been an important priority for the federal government,” she said. She also noted that after the early outbreak at the Seattle-area facility, the CDC sent a team of medical personnel to support the nursing home.
But their testing regime was all wrong, long-term-care experts and advocates told me: Residents and staffers should have been tested from the start to help slow the spread. Canterbury, for example, was only able to start screening residents for the virus on March 17, six days after its first case. It’s not enough just to take temperatures, a practice that many facilities have adopted since the start of the pandemic, because so many people with the virus are asymptomatic, Grabowski said. (Body temperature is also not necessarily a useful indicator, given that older adults with COVID-19 can present atypical symptoms.)
Recent developments have come as a relief to some advocates. On Monday, the CDC formally rearranged its testing priorities into two categories, labeling residents in long-term-care facilities with symptoms “high priority” and asymptomatic residents as “priority.” Last week, the Trump administration issued new rules requiring nursing homes to inform residents and their family members about COVID-19 cases in the building, and a few days before that, the administration announced more funds to help expand rapid testing.
But more than 10,000 residents and staff of long-term-care facilities are already dead, as of this writing, and the virus is continuing to spread rapidly. Many long-term-care facilities still need much more PPE, says Mark Parkinson, the president and chief executive officer of the American Health Care Association and National Center for Assisted Living, a trade organization that represents nursing and assisted-living homes. The majority of facilities still don’t have easy access to testing, and are still woefully short-staffed. “We just need to be made a priority,” he says. “If we can do that, we can change the outcome of this.”
The immense trauma and strain of the past two months demonstrate the necessity of investing in the care of America’s most vulnerable people, advocates say. “This has been the most formative experience in my professional life,” Wright told me tearfully, “and I hope that, as a society, it is a formative experience as well.”
My grandmother moved into her assisted-living home in the summer of 2016. It was a cozy apartment in a small building, with a view of the back flower garden, and in the hallway outside her door was a glass enclosure full of noisy songbirds. In the afternoons, Meemaw practiced seated yoga and played Kings in the Corner with her friends. In 2018, she was the building’s dominoes champion.
Two weeks ago, the remaining residents at Meemaw’s home were evacuated to nearby facilities and hospitals, when it became clear that not enough staff were left to care for them. The facility closed. This week, its owners announced that it will not reopen.