The Documenting COVID-19 project and the USA TODAY Network spent months investigating why COVID-19 deaths go uncounted due to errors and omissions on death certificates. As part of this project, journalists asked the public for stories about issues they had with death certificates.
One of the responses came from Jody Fiorini in upstate New York – one of the five children of Jim and Dee.
James and Delores Luciani, known as Jim and Dee, lived their retirement years in a small, two-bedroom apartment in Syracuse, New York. They were a fun, sarcastic couple in their 80s, high school sweethearts that had been married for 68 years. Jim, a former Army medic and IBM computer programmer who grew up speaking Slovak, was quirky and cerebral, Fiorini said. Dee, standing at just 4 feet, 8 inches tall, was a ball of energy, spending most days exchanging gossip with neighbors.
Their five children were spread across the country, so Jim and Dee lived alone. They were mostly healthy at the start of the pandemic, although Dee sometimes struggled with early-stage dementia, asking and re-asking the same questions.
The pandemic changed all of that, Fiorini said – though you wouldn’t know it from their death certificates.
In July 2020, Jim and Dee were taken to a local hospital, Jim with a cough and Dee after breaking her arm in a fall. A few days after their arrival, Jim died in his sleep. A passing nurse saw his eyes closed, his breakfast fork still resting in his hand, his daughter said.
Dee, whose dementia had worsened in the hospital, went to live in a nursing home near another daughter in Rochester, New York. She sometimes forgot Jim and, on the occasions she would remember him and the fact that he had died, her family and the nursing home were quick to reassure her with a well-intentioned lie: Jim wasn’t dead; he was simply at another facility.
“We didn’t want her to grieve every time she remembered,” Fiorini said.
That winter, her nursing home experienced a deadly COVID-19 outbreak. Dee died in January, with her children saying their goodbyes over a 10-minute Zoom call.
On his death certificate, Jim’s cause of death is listed as coronary artery disease. He was never tested for COVID-19 despite all indications he was sick from the virus, his family said. After he died, his doctor told his family they couldn’t waste a sorely-needed test on the dead to confirm the diagnosis.
While medical paperwork provided by the Luciani family largely corroborates their account, many family members of those who have died from COVID-19 are not told the cause of death and never see the death certificate.
Dee did test positive for COVID-19, but her underlying cause of death was listed as dementia. Her family has tried and failed to change that, stymied by a seemingly endless maze of paperwork and bureaucracy. Without COVID-19 on the death certificates, the Lucianis have not been reimbursed for the couple’s burial, up to $9,000 per person from the Federal Emergency Management Agency.
The Lucianis’ experience underscores the difficulties many families face when trying to get errors fixed on legal documents, like death certificates. If COVID is suspected, it should be included on death certificates, said Dr. James Gill, Connecticut’s chief medical examiner and the president of the National Association of Medical Examiners.
Even given the lack of tests, a nasal swab after someone has died is important to investigate COVID-19 deaths, and to check if family members and first responders were exposed, Gill said.
“A properly completed death certificate saves lives,” he said.
Jim’s death certificate was signed by an attending physician; Dee’s was signed by a physician assistant.
The upstate New York hospital and the nursing home where the Lucianis died did not respond to requests for comment about the inaccurate death certificates.
The Lucianis don’t factor into New York and the nation’s COVID statistics, which are based on local and state health departments’ reports to the Centers for Disease Control and Prevention. Those figures influence decisions on where to commit resources, including federal money for local health departments.
Their deaths are part of a “feedback loop” of complacency and misinformation, public health experts say. If communities don’t have accurate data on how many of their residents are dying, they are less likely to take protective measures themselves, like wearing masks and avoiding big groups indoors.
Watching television in her home in Wichita, Kansas, in September, Fiorini saw a memorial on the National Mall in Washington, with 600,000 small white flags representing those killed by COVID-19.
“Seeing that, I just couldn’t help to think to myself: My parents, they’re not represented there,” she said. “They are uncounted.”
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This article originally appeared on USA TODAY: Deaths of elderly couple show how COVID deaths can go uncounted