Government counts of the devastation from coronavirus among the most vulnerable elderly likely missed more than 16,000 COVID-19 deaths in U.S. nursing homes during the early months of the pandemic, an academic study published today has found.
The missing deaths add up to 14 percent of what researchers estimate to be the true death toll in nursing homes for all of last year, according to the analysis in JAMA Network Open, a peer-reviewed publication of the American Medical Association.
Researchers also estimated that 68,000 additional coronavirus cases – representing nearly 12% of last year’s total nursing home cases – were omitted before a federal reporting requirement took effect in late May 2020.
Researchers compared federal counts with the numbers captured by 20 states that separately tracked nursing homes outbreaks and deaths. Four in 10 deaths went unreported prior to the requirement, the review determined.
The academics said they were driven to ensure the pandemic’s full toll is not forgotten. Applying their findings to the entire nation, they pegged the true impact on nursing homes at 592,629 cases and 118,335 deaths by the end of 2020.
“We would just lose a sense of those people’s lives in the history books,” said lead author Karen Shen, who recently completed her graduate work at Harvard University. “That just didn’t feel right to us.”
In a statement, a nursing home industry association faulted the government for taking months to provide support to nursing homes, noting that real-time data would have helped inform its response, too.
“We encourage state and federal officials to improve our nation’s data collection and sharing efforts during public health emergencies,” the American Health Care Association wrote in a statement.
The impact of the missing deaths most affected the total figures reported by northeastern states hit hard by the pandemic’s first wave in the spring of 2020.
For example, death counts captured by the federal tracker would suggest similar outcomes between nursing homes in California and New York. But after accounting for early reporting gaps, the study found stark disparities: New York nursing homes experienced 8 deaths per 100 beds, compared to 5.5 per 100 in California.
A year and a half after her mother’s death, Vivian Zayas is still seeking answers from New York state, where an attorney general investigation earlier this year first exposed rampant underreporting of COVID-19 cases in nursing homes.
Zayas initially was confused when, the weekend before her expected discharge, her mother suddenly stopped being able to talk over the phone from her room. The 78-year-old seamstress had gone to a nursing home at the start of the pandemic for a short rehabilitation following knee replacement surgery complications.
Ana Martinez never returned to the sewing projects neatly pinned in her Brooklyn apartment.
Instead, after Zayas insisted that Martinez be transferred to a hospital for treatment, she learned her mother’s lung had collapsed. Then, her kidneys failed. Martinez was placed on a respirator.
Ultimately, Zayas received a death certificate stamped “COVID-19.”
Zayas ever since has pressed for more accountability for nursing homes through Voices for Seniors, a non-profit organization she cofounded with her sister. She was not surprised by the study’s findings.
“We want investigations,” Zayas said. “That would be the best way to honor not just the people who died, but also the families who are bewildered that the government just does not care.”
Despite warnings of the disproportionate impact from the nation’s first major outbreak at a nursing home in Kirkland, Washington, the federal government did not for months require consistent reporting from these facilities, researchers noted.
When standardized reporting finally took effect, nursing homes were given the option – but not mandated – to report retroactive totals in their initial case and death count filings the week of May 24, 2020.
Once the national tracking got underway, the reporting appears to have become more consistent, noted study author Ashvin Gandhi, an assistant professor at UCLA’s Anderson School of Management.
Complete case and death numbers from the first wave may never be known, given the shortages of COVID-19 tests that limited the ability to track the pandemic’s early course through nursing homes.
“It certainly is frustrating,” Gandhi said, “that we are still now trying to recover these true counts.”
Letitia Stein is a reporter on the USA TODAY investigations team, focusing primarily on health and medicine. Contact her at firstname.lastname@example.org, @LetitiaStein, by phone or Signal at 813-524-0673.