The Feb. 29 death of a Washington state nursing home resident signaled a warning to long-term care facilities throughout the country. The coronavirus was no longer a specter; it was here and it could sweep through a vulnerable population, leaving a trail of grief.
Yet facilities and government leaders were still unprepared for the onslaught of COVID-19 cases and deaths. Dozens more would die at the facility in Kirkland, Washington. The same staggering loss hit home after home: 81 deaths at the New Jersey Veterans Home at Paramus; 76 deaths at Brighton Rehab and Wellness Center in Pennsylvania; 60 deaths at the Courtyard Nursing Care Center in Massachusetts.
Over the last three months, more than 40,600 long-term care residents and workers have died of COVID-19 — about 40 percent of the nation’s death toll attributed to the coronavirus, according to an analysis of state data gathered by USA TODAY. That number eclipses a count released Monday by the Centers for Medicare and Medicaid Services (CMS), the federal government’s first attempt at a comprehensive tally. CMS said 25,923 residents had died, but its number only includes federally regulated nursing homes, not assisted living facilities.
Even USA TODAY’s larger total — which amounts to roughly 450 COVID-19 elder care facility deaths per day — is an undercount. Seven states did not provide the number of deaths in long-term care. And New York, the state with the most resident deaths, doesn’t include those who had been transferred to hospitals in its count of long-term care fatalities.
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The incomplete picture of the problem and the deficiencies that contributed to that devastating death toll – such as limited testing, a lack of personal protective equipment and lax infection control – remain a significant hurdle. As states lift restrictions on life outside of nursing homes’ doors, experts worry the threat of the virus getting inside facilities is only increasing.
"We're at a very fragile point right now," said Katie Smith Sloan, president and CEO of LeadingAge, a national association of nonprofit providers of aging services. "Because as states and communities begin to reopen, we still have no more than a patchwork plan for protecting older lives."
More than 2.4 million people live in long-term care settings, including the nation’s roughly 15,400 federally regulated nursing homes and nearly 42,400 assisted living communities, according to the American Health Care Association and National Center for Assisted Living.
To date, 37 states have released at least partial lists of facilities with cases of COVID-19, but many were slow to make that move. Texas, Virginia and Arizona are among the states that still do not release facility-level data.
Search USA TODAY's database of publicly disclosed facilities with COVID-19 cases here:
CMS said it would be releasing the facility-specific information it collected later this week. But about 20 percent of facilities did not report information, the agency said. And though CMS said it has encouraged nursing homes to report all cases and deaths, it only required numbers going back to early May.
In a statement, a CMS spokeswoman said the agency has been proactive in communicating with nursing homes and offering guidance throughout the pandemic. On Monday, the agency announced more aggressive infection control measures, including increasing fines for persistent violations and withholding funds from states that don’t inspect every nursing home in the coming months.
Nursing homes struggled with infection control far before the pandemic. Seventy-five percent of U.S. nursing homes have been cited for failing to properly monitor and control infections in the past three years, according to a USA TODAY analysis of federal inspection data.
On Feb. 6, as fears about the coronavirus mounted, CMS reminded facilities of the importance of infection control practices, including things as basic as handwashing and wearing gloves.
Less than two weeks later, a nurse at Life Care Center of Kirkland raised concerns about a cluster of residents with respiratory infections, according to federal inspection records. No one reported it to county health officials until Feb. 26. Meanwhile, more and more residents became ill.
In total, more than 110 residents and staff at the facility would test positive for COVID-19.
By the time the Centers for Disease Control and Prevention issued its report on the outbreak on March 18, COVID-19 had infiltrated nursing homes across the country. Today, more than 9,600 long-term care facilities have reported at least one case of COVID-19, according to USA TODAY’s analysis. More than 208,000 people at those facilities have tested positive. That number includes at least 38,600 employees.
"What’s happening in nursing homes today and other long-term care facilities is a national disgrace," Nancy LeaMond, executive vice president and chief advocacy and engagement officer at the AARP, said last week during an event hosted by Axios. "On Feb. 29, Washington state reported the first COVID-19 outbreak in a long-term care facility and here we are, three months later, and we still don’t have a solid, consistent action plan across the country."
'This didn't have to happen'
Cloaked in a paper gown and face mask, Maria Porteus watched the slow rise and fall of her father’s chest as he lay propped in bed at Luxor Nursing and Rehab at Mills Pond, a New York nursing home. His breathing sounded like firecrackers.
Two weeks earlier, on March 25, Luxor had followed a directive from Gov. Andrew Cuomo and accepted a hospital patient who had tested positive for COVID-19. Porteus said she wasn’t told. If she had been, she says she or her brother would have brought their father, Carlos Gallegos, to live with them at home.
Instead, she said she first learned that the facility had cases of COVID-19 when a nurse called to say her father was running a 102-degree fever. On April 9, she and her brother stood at the foot of his bed and touched his blanketed feet with their gloved hands. He died later that night.
A spokesman for the facility said Luxor’s staff were deeply saddened by Gallegos’ death but would not comment on how he contracted the virus.
"I would be at peace if this had been God's will," Porteus said through tears. "But this didn't have to happen."
The first months of the pandemic have been marked by complaints from families who say they have been kept in the dark about what is happening in their loved ones' facilities.
Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, said she is concerned about the amount of information available to the public and the fact that CMS only required facilities to report numbers going back to early May.
"That leaves almost three months of kind of a black hole where we don't have data on what's been happening in these facilities in some cases," she said. "We can't successfully move forward and look at not only what happened, but what we can do to improve, if we don't have the data."
There are inconsistencies both in what is being tracked and what is being released at the state level.
In Michigan, the state health department for months failed to track COVID-19 cases in its more than 1,000 assisted living facilities. A spokeswoman said the state began collecting that information May 22 but doesn’t have plans to release it publicly at this time.
In New York, the state's official count of long-term care residents who have died doesn’t include those transferred to hospitals or other healthcare settings. Facilities are required to report those deaths to the state, but officials at the New York State Health Department said only deaths at the facility are included in the public tally to avoid double-counting. A spokesman said the state "has provided the public with the clearest possible understanding" of the virus' impact from the start of the pandemic. He did not respond to questions about how many deaths of long-term care residents have been reported by facility owners but not publicly disclosed by the state.
Other states may also be undercounting long-term care fatalities. At least seven states – including Massachusetts, Florida and Louisiana – track deaths in part by matching the deceased’s address to the address of a care facility, potentially leaving out those who were staying at a facility short-term. And at least 17 states use information reported by facilities, with operators keeping track of residents who are transferred to a hospital.
In Pennsylvania, officials released a list of 557 facilities with COVID-19 cases for the first time on May 19. Almost immediately, the state healthcare association said the list was riddled with mistakes and demanded the errors be fixed. State officials made numerous updates to the data, including lowering the number of deaths and cases at some facilities.
Nate Wardle, spokesman for the department, said the state had relied upon its own disease surveillance system because many facilities either missed the May 17 deadline to report information to the state or provided current, not cumulative, numbers.
"We have recognized there were some issues with the initial report. We are working through those," Wardle said. "In the future this won’t be an issue because the facilities are going to be reporting the data themselves."
‘They are more vulnerable’
On Mother’s Day, visitors to River Garden Senior Services in Jacksonville, Florida, were given temperature checks at the guard booth before handing over the flowers and candy they brought for their loved ones. Their gifts were delivered by employees.
CEO Martin Goetz said families haven‘t been allowed inside the facility since mid-March, and he doesn’t see that changing without regular testing, given that asymptomatic staff and visitors could unknowingly bring the virus on campus.
The 600 residents and employees at his facility will be tested this week as part of a state plan to expand testing at long-term care facilities. But Goetz doesn’t know when that will happen again. He said he doesn’t believe River Garden has had any cases of COVID-19 and hopes testing will confirm that the facility is coronavirus-free.
"Without continuous testing and contact tracing and a stable environment out in the community, I will not open this campus," Goetz said.
CMS last month outlined a cautious plan for reopening the nation’s nursing homes. Leaving the final decision up to state and local governments, the agency encouraged facilities to meet several criteria before relaxing restrictions on visitation, including having an adequate level of personal protective equipment and no new cases of COVID-19 within the home for four weeks. The plan also takes into account the prevalence of cases in the surrounding community.
The agency recommended weekly testing of staff and residents.
Most states are far from hitting that benchmark, a USA TODAY survey of state health departments in mid-May found.
At least eight states – including Illinois, Minnesota, North Carolina and Nevada – said they were prioritizing testing either in facilities with confirmed cases or when individuals exhibit symptoms. About 14 states – including Kentucky, Maryland, and Wisconsin – are requiring testing of all residents and staff, regardless of the presence of an outbreak. New York is requiring staff be tested twice weekly.
In West Virginia, the first state to commit to universal testing in long-term care communities, officials said testing across all 123 facilities identified 28 new homes with the virus. Several other states working toward universal testing recently told USA TODAY that the first round would not be complete until the end of May or early June, leaving questions about whether they could achieve the kind of regularity experts say is needed to keep COVID-19 out of facilities.
Jennifer Nuzzo, a senior scholar at the Johns Hopkins Center for Health Security, said state governments need to be doing more to help facilities not only ramp up testing but secure access to personal protective equipment, fill staffing gaps and address other daily challenges. She said she worries the conversation surrounding nursing homes – including efforts to publicly name those with cases – has been focused on placing blame rather than providing assistance to solve systemic problems.
"I don't think it should come from a position of antagonism with these facilities," Nuzzo said. “It has to be partnership with government. Regular eyes on these facilities. Have people visit them. Assess them on a routine basis to make sure they have exactly what they need. Having regular calls to identify problems early so that they can figure out solutions before outbreaks occur."
As communities begin to open up, Nuzzo said now is not the time to reopen nursing homes.
"Nursing homes are not any safer today than they were a month ago, two months ago," she said. "In fact, they are more vulnerable."
Without an end in sight, home operators need to do more to connect residents with their loved ones outside, said Eric Carlson, a directing attorney at Justice in Aging. CMS in March encouraged nursing homes to make that a priority. But Carlson said the agency needs to require nursing facilities – which have received federal money to support their response to the pandemic – to use technology to make sure families stay connected. He also said more can be done under the current federal guidelines, which ban visitors except in certain "compassionate cases."
"Some facilities have just read that very rigidly as including only end-of-life situations, and then further limiting that by defining end of life as the absolute end of life," he said. "You'd like to see some more discretion in there, recognizing when it might be particularly important for a particular resident or residents to receive a visit from family members."
Patty Ducayet, who has been Texas’s long-term care ombudsman for 14 years, said she sees a growing desperation among families, now separated from their loved ones for months. Children worry parents with dementia will forget who they are.
Ducayet shares their concern and wonders: what is the path to residents again enjoying the comfort of a hug, to seeing the face of a loved one not filtered through a pane of glass.
"We have got to find a balance here, and we cannot isolate residents indefinitely," she said. "We would be changing the fabric of our long-term care system. And it would be cruel."
USA TODAY Network reporters Trevor Ballantyne, Jo Ciavaglia, Tony Cook, Anjeanette Damon, Pat Ferrier, John Heasly, Jeannette Hinkle, Emily Hopkins, Daveen Rae Kurutz, Mary Landers, Dak Le, Arpan Lobo, James O'Neill, A. Drew Smith and Joshua Solomon contributed to this report.
Marisa Kwiatkowski is a reporter on the USA TODAY investigations team, focusing primarily on children and social services. Contact her at firstname.lastname@example.org, @IndyMarisaK or by phone, Signal or WhatsApp at (317) 207-2855.
Tricia L. Nadolny is a reporter on the USA TODAY investigations team. She can be reached at email@example.com or @TriciaNadolny.
Jessica Priest is a reporter on the USA TODAY regional investigations team. She can be reached at firstname.lastname@example.org or @jessica_priest.
Mike Stucka is a reporter on the USA TODAY data team. He can be reached at email@example.com or @MikeStucka.