May 29, 2020

'Her death … was not counted': Why many who die of Covid-19 don't show up in America's death tolls

Daily Briefing

    America's disparate system for tracking Covid-19 deaths often means patients are excluded from the official tallies, Elisabeth Rosenthal, a journalist and former physician, writes for Kaiser Health News. Rosenthal explains that her mother, who recently died from a "suspected" case of Covid-19, is likely one of those patients—and she deserves to be counted. 

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    On May 4, Rosenthal's mother died in an assisted living facility. The primary cause of death on her mother's death certificate is "Acute Respiratory Distress Syndrome," and the secondary cause states "suspected Covid-19."

    Because her mother met the clinical case definition of Covid-19, she was receiving standard outpatient treatment for the disease and was placed in isolation and hospice care—but Rosenthal writes her mother was never tested for the disease before she died.

    "[H]er death was, as far as I can tell, not counted," Rosenthal writes—and she's not alone.

    "Unfortunately, counting Covid-19 deaths and cases has been turned into a battle of semantics, chance, bureaucracy, politics and immediate circumstance, rather than science," Rosenthal writes.

    While public health experts, including National Institute of Allergy and Infectious Diseases Director Anthony Fauci, largely agree the United States is undercounting Covid-19 cases and deaths, the country still does not have a uniform and transparent tracking system, Rosenthal writes.

    Instead, state and federal agencies are counting the deaths in different ways. For instance, CDC and New York state previously required a positive Covid-19 test to count a mortality toward the disease's overall death toll, but now both are including cases that list "presumed" and "assumed" Covid-19 as a cause of death.

    However, Rosenthal writes that it's not clear if cases of "suspected Covid-19," which is how her mother was classified, are included. Jill Montag, a spokesperson for the New York Department of Health, told Rosenthal, "The case count for deaths of residents in nursing homes and adult care facilities includes presumed (as determined by a physician) Covid-19 deaths." In May, Colorado said it would not count about 300 people who had tested positive for Covid-19, but did not have the disease listed as a cause of death, Rosenthal writes.

    Former acting CMS Administrator Andy Slavitt in a recent Twitter post also said it's common that Covid-19 positive patients who have other health conditions are not included in the Covid-19 death count.  

    "[A] number of states have decided that if you die from COVID but have another condition, you died from that other condition," Slavitt said wrote. "Have skin cancer? You didn't die from Covid. Have diabetes? You didn't die from Covid."

    Rosenthal writes that had her mother been admitted to a hospital, she likely would have been tested. "But she didn't want aggressive treatment, such as a ventilator, and she was not in pain or struggling to breathe," Rosenthal writes. "So she stayed in her apartment."

    But Rosenthal writes that there is another "disturbing" reason she believes people like her mother go untested: "Not testing or transparently reporting Covid-19 cases is a great way to keep numbers low," Rosenthal writes.

    Rosenthal writes that some states may be motivated to under test and under report Covid-19 cases in order to demonstrate that cases have decreased for 14 days, which is CDC's recommendation for reopening.

    Assisted living and nursing facilities may have similar motivations because they don't want to be branded as a place with a Covid-19 outbreak, Rosenthal writes.

    The need for accurate reporting

    But under-reporting and under-testing for Covid-19 "deprives those same states," agencies, and facilities "of crucial information" necessary to make "rational decisions" about containing the virus and reopening the economy, Rosenthal writes.

    Counting those deaths may make the numbers look worse, "[b]ut it would also greatly add to our knowledge of how this virus spreads and affects patients, as we try to develop a coherent strategic reaction," Rosenthal writes. "What we need instead is a single and clear national testing strategy outlining who must be tested, when and with which test" (Rosenthal, Kaiser Health News, 5/27).

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