Tagged CDC

When Covid Deaths Aren’t Counted, Families Pay the Price

On Sundays, Bishop Bruce Davis preached love. Through his Pentecostal ministry, he organized youth parades and gave computers, bicycles and food to families in need.

During the week, Bruce practiced what he preached, caring for prisoners at a Georgia hospital. On March 27 he began coughing, and on April 1 he was hospitalized. He’d tested positive for covid-19. The virus swept through his household, infecting his wife and daughter and hospitalizing their disabled son. Ten days after landing in the hospital, Bruce died.

But when Gwendolyn Davis received her husband’s death certificate, she was taken aback. The causes of death? Sepsis and renal failure. No mention of covid-19.

“He wouldn’t have had kidney failure if he didn’t have covid,” Gwendolyn said.

After Bruce died, his wife applied to two pandemic relief programs seeking help with $1,500 in missed payments on a truck and an electricity bill. But, she said, she was denied because his death certificate didn’t mention covid-19.

“I think it’s wrong,” Gwendolyn said. “It’s almost like we didn’t count.”

The count has profound implications for families and the country. Omitting covid-19 on death certificates threatens to undercount the toll of the pandemic nationwide. For Davis’ family and others, it can pile financial hardship onto emotional despair, as death benefits and other covid-19 relief programs are withheld. Interviews with families across the U.S. shed light on reasons covid deaths are being undercounted — and the consequences loved ones have endured.

When covid patients die, the “immediate” cause of death is always something else, such as respiratory failure or cardiac arrest. Residents, doctors, medical examiners and coroners make the call on whether covid was an underlying factor, or “contributory cause.” If so, the diagnosis should be included on the death certificate, according to the Centers for Disease Control and Prevention.

Even beyond the pandemic, there is wide variation in how certifiers describe causes of death: “There’s just no such thing as an objective measure of cause of death,” said Lee Anne Flagg, a statistician at the CDC’s National Center for Health Statistics.

Partly because of a lack of training in how to fill them out, “the quality of the death certificates is not good,” said Dr. James Gill, vice president of the National Association of Medical Examiners. And in cases in which people had other chronic conditions, it can be difficult to determine whether covid was a contributing cause of death, he said. That was especially true early on, when reliable testing was not widely available.

Since early in the pandemic, the CDC has encouraged certifiers who suspect covid as a cause of death to list it on the death certificate as “probable” or “likely.”

Still, some clinicians are “reluctant to certify a death as a covid death without a test in hand,” Gill said.

It’s not clear how Bruce Davis’ case slipped under the radar. His death was certified by William Ken Garland, deputy coroner in Baldwin County. Reached by phone, Garland said the causes of death were provided by Dr. Joseph Coppiano, a medical resident who pronounced Davis dead at Augusta University Medical Center, about 90 miles away. No autopsy was done.

“I did certify the record, but that’s about all I did,” Garland said.

Hospital spokesperson Danielle Harris declined to comment on the case, citing patient privacy. She said the hospital follows Georgia Department of Public Health guidelines.

In the absence of certainty, the CDC has encouraged coroners to document the virus. “We’re not worried that we’re overcounting the number of [covid-19] deaths,” Farida Ahmad, epidemiologist and mortality surveillance team leader at NCHS, said in April.

Missed cases are one reason that experts agree covid deaths are being undercounted nationwide. As evidence for that, they point to the vast number of excess deaths — additional deaths compared to what would be expected based on prior-year numbers and demographic trends.

Over the past year, the U.S. had endured up to 431,792 excess deaths as of Jan. 6, with 68% directly attributed to covid, according to the CDC.

These excess deaths “tend to track pretty closely with covid cases, trailing by a couple of weeks,” said Daniel Weinberger, an epidemiologist at Yale School of Public Health who has published on this topic. “This strongly suggests that a large proportion of these uncounted deaths are due to covid but not recorded as such.”

We may never know how many covid deaths went uncounted: Postmortem tests can detect the virus, but it’s “unlikely that this type of testing will be performed at a [sufficient] scale,” Weinberger said. Early in the pandemic, especially in the Northeast, many of those who were treated clinically for covid and then died were not tested for the virus — so they never made it into the statistics.

Testing Troubles Affect Lawsuits, Hospital Bills

Inaccurate death certificates can make it harder to pursue a lawsuit or win a workers’ compensation case when a loved one dies after contracting covid on the job. Gwendolyn Davis did win workers’ compensation death benefits from Bruce’s employer, a state psychiatric facility in Milledgeville, by providing medical records. But problems with covid testing can complicate the process.

Bruce’s supervisor at work, Mark DeLong, also died after contracting covid, but it did not appear on his death certificate with the other causes: cardiopulmonary arrest, respiratory failure and diabetes.

The omission on DeLong’s certificate seemed to stem from a delay in test results: His covid-positive results didn’t arrive until three days after he died, according to his widow, Jan DeLong. She has asked the local coroner to correct the record.

In New Jersey, attorney Paul da Costa represents 75 family members who lost loved ones at veterans homes in Menlo Park and Paramus in April and May. He said he knows of at least five patients whose death certificates did not list covid-19 despite evidence suggesting it killed them.

The root problem, he said, was a “complete dearth of testing.” Patients were transferred to hospitals, or dying in the veterans facilities, without ever being tested, he said.

The gap between excess deaths and confirmed covid deaths has “narrowed over time as testing has increased,” Weinberger said.

Early testing inaccuracy may also have led to undercounting, which creates a different burden: hospital bills. Without a diagnosis, families can be on the hook for thousands of dollars in charges that otherwise would have been covered under the CARES Act.

Correcting the Record

In some cases, families have sought to have death certificates changed to reflect covid. Dorothy Payton, 95, who lived in the ManorCare nursing home in Denver, first showed covid symptoms April 5. Five days later, Payton — known as “Nana Dee” — tested positive for it. And on April 13, her husband, Edward Benjamin, received a call that she had died.

The death certificate offered a litany of causes: vascular dementia, atrial fibrillation, congestive heart failure, gait instability, difficulty swallowing and “failure to thrive.”

But not covid-19. So it “seemed logical to fight for listing her cause of death under her cause of death,” Benjamin said.

After a few calls, her husband was able to get the certificate amended. ManorCare could not be reached for comment.

For Benjamin, it wasn’t about public health statistics or financial considerations. It simply offers a sense of closure.

“I want her life and death remembered the way it was, and I’m glad we set the record straight,” he said. “It’s the first step towards moving on.”

This story is part of “Lost on the Frontline,” an ongoing project from The Guardian and Kaiser Health News that aims to document the lives of health care workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease. If you have a colleague or loved one we should include, please share their story.

Feeling Left Out: Private Practice Doctors, Patients Wonder When It’s Their Turn for Vaccine

Dr. Andrew Carroll — a family doctor in Chandler, Arizona — wants to help his patients get immunized against covid, so he paid more than $4,000 to buy an ultra-low-temperature freezer from eBay needed to store the Pfizer vaccine.

But he’s not sure he’ll get a chance to use it, given health officials have so far not said when private doctor’s offices will get vaccine.

“I’m really angry,” said Carroll.

Not only are doctors having trouble getting vaccine for patients, but many of the community-based physicians and medical staff that aren’t employed by hospitals or health systems also report mixed results in getting inoculated. Some have had their shots, yet others are still waiting, even though health workers providing direct care to patients are in the Centers for Disease Control and Prevention’s top-priority group.

Many of these doctors say they don’t know when — or if — they will get doses for their patients, which will soon become a bigger issue as states attempt to vaccinate more people.

“The reason that’s important is patients trust their doctors when it comes to the vaccine,” said Carroll, who has complained on social media that his county hasn’t yet released plans on how primary care doctors will be brought into the loop.

Collectively, physicians in the county could vaccinate thousands of patients a day, he said, and might draw some who would otherwise be hesitant if they had to go to a large hospital, a fairground or another central site.

His concern comes as, nationally, the rollout of the vaccine is off to a slower start than expected, lagging far behind the initial goal of giving 20 million doses before the new year.

But Dr. Jen Brull, a family practice doctor in Plainville, Kansas, said her rural area has made good progress on the first phase of vaccinations, crediting close working relationships formed well before the pandemic.

This fall, before any doses became available, the local hospital, the health department and physician offices coordinated a sign-up list for medical workers who wanted the vaccine. So, when their county, with a population of 5,000, got its first 70 doses, they were ready to go. Another 80 doses came a week later.

“We’ll be able to vaccinate almost all the health care-associated folks who wanted it in the county” Brull said recently

Gaps in the Rollout

But that’s not the case everywhere.

Dr. Jason Goldman, a family doctor in Coral Gables, Florida, said he was able to get vaccinated at a local hospital that received the bulk of vaccines in his county and oversaw distribution.

In the weeks since, however, he said several of his front-line staff members still “don’t have access to the vaccine.”

Additionally, “a tremendous number” of patients are calling his office because Florida has relaxed distribution guidelines to include anyone over age 65, Goldman said, asking when they can get the vaccine. He’s applied to officials about distributing the vaccines through his practice but has heard nothing back.

Patients “are frustrated that they do not have clear answers and that I am not being given clear answers to provide them,” he said. “We have no choice but to direct them to the health department and some of the hospital systems.”

Another troubling point for Goldman, who served as a liaison between the American Academy of Family Physicians and the expert panel drawing up the CDC distribution guidelines, is the tremendous variation in how those recommendations are being implemented in the states.

The CDC recommends several phases, with front-line health care workers and nursing home residents and staff in the initial group. Then, in the second part of that phase, come people over 75 and non-health care front-line workers, which could include first responders, teachers and other designated essential workers.

States have the flexibility to design their own rollout schedule and priority groups. Florida, for example, is offering doses to anyone 65 and up. In some counties, older folks were told vaccines were available on a first-come, first-served basis, a move that has resulted in long lines.

“To say right now, 65-plus, when you haven’t even appropriately vaccinated all the health care workers, is negating the phasing,” said Goldman. “There needs to be a national standard. We have those guidelines. We need to come up with some oversight.”

On Thursday, the American Hospital Association echoed that concern in a letter to Health and Human Services Secretary Alex Azar. Hospitals — along with health departments and large pharmacy chains — are doing the bulk of the vaccinations.

Calling for additional coordination by federal officials, the letter outlined what it would take to reach the goal of vaccinating 75% of Americans by the end of May: 1.8 million vaccinations every day. Noting there are 64 different rollout plans from states, cities and other jurisdictions, the letter asked whether HHS has “assessed whether these plans, taken as a whole, are capable of achieving this level of vaccination?”

Making It Work

Lack of direct national support or strategy means each county is essentially on its own, with success or failure affected by available resources and the experience of local officials. Most state and local health departments are underfunded and are under intense pressure because of the surging pandemic.

Still, the success of vaccination efforts depends on planning, preparation and clear communication.

In Lorain County, Ohio, population 310,000, local officials started practicing in October, said Mark Adams, deputy health commissioner. They set up mass vaccination clinics for influenza to study what would be needed for a covid vaccination effort. How many staff? What would the traffic flow be like? Could patients be kept 6 feet apart?

“That gave us an idea of what is good, what is bad and what needs to change,” said Adams, who has had previous experience coordinating mass vaccination efforts at a county level.

So, when the county got its first shipment of 500 doses Dec. 21, Adams had his plan ready. He called the fire chiefs to invite all emergency medical technicians and affiliated personnel to an ad hoc vaccination center set up at a large entertainment venue staffed by his health department. Upon arrival, people were greeted at the door and directed to spaced-apart “lanes” where they would get their shots, then to a monitoring area where they could wait for 15 minutes to make sure they didn’t have a reaction.

Right after Christmas, another 400 doses arrived — and the makeshift clinic opened again. This time, doses went to community-based physicians, dentists and other hands-on medical practitioners, 600 of whom had previously signed up. (Hospital workers and nursing home staff and residents are getting their vaccinations through their own institutions.)

As they move into the next phase — recipients include residents over 80, people with developmental disorders and school staff — the challenges will grow, he said. The county plans a multipronged approach to notify people when it’s their turn, including use of a website, the local media, churches, other organizations and word-of-mouth.

Adams shares the concerns of medical providers nationwide: He gets only two days’ notice of how many doses he’s going to receive and, at the current pace of 400 or 500 doses a week, it’s going to take a while before most residents in the county have a chance to get a shot, including the estimated 33,000 people 65 and older.

With 10 nurses, his clinic can inject about 1,200 people a day. But many other health professionals have volunteered to administer the shots if he gets more doses.

“If I were to run three clinics, five days a week, I could do 15,000 vaccinations a week,” Adams said. “With all the volunteers, I could do almost six clinics, or 30,000 a week.”

Still, for those in the last public group, those age 18 and up without underlying medical conditions, “it could be summer,” Adams said.