What Tony Calloway wanted most was to have his little sister back. Angela Calloway had a respiratory infection and was struggling to breathe when paramedics arrived at her home, just down the street from Tony’s in Lenoir, North Carolina, on March 30. As soon as the 46-year-old was strapped into the gurney, however, her heart stopped, and she couldn’t be revived.
But since Tony couldn’t save his sister, then at least he wanted answers.
Because Angela didn’t die at the hospital, her case was turned over to the Caldwell County medical examiner. Tony assumed that since his sister had been young and healthy, and had died suddenly, she would receive an autopsy. But because Angela’s COVID-19 test came back negative, the medical examiner opted to close her case despite protestations from him and Angela’s physician. So Tony decided to seek a private autopsy from a local pathologist.
“We couldn’t understand why ... a healthy 46-year-old girl could die so quickly,” Tony says. “It was like no one cared.”
Even before the pandemic, the autopsy rate in the U.S. had been in decline. Now, infection control guidelines, increased caseloads, and fewer pathologists who are comfortable performing the task have created an autopsy shortage. Vidal Herrera, owner of the company 1-800-AUTOPSY in East Los Angeles, says that public officials such as coroners and medical examiners can be so overwhelmed by the COVID-19 death toll that they’re sometimes giving non-COVID fatalities what is called a “predictable cause of death” rather than requesting an autopsy.
“There’s a perception about autopsies that it's not useful, that it's not going to help, and that we already know how to determine the cause of death without an autopsy,” says Mary Fowkes, director of neuropathology and autopsy service at Mt. Sinai School of Medicine in New York City. “That’s absolutely not true.”
As a result of the shortage, private autopsy companies around the country have seen a surge of business from families like the Calloways, who are searching for answers about their loved ones. Herrera says that he is busier now than at any other time in his company’s 32-year history. He adds that his decades of hands-on experience have confirmed the power of autopsy in understanding how the human body works, and how it ultimately fails.
The birth of private autopsy
For centuries, dissecting the human body to learn about disease was taboo; some religions still object to the practice. Curious or determined physicians were forced to rob graves to learn basic facts about how the body worked. By the mid-1900s, however, the cadaver lab was a rite of passage for first-year medical students, and half of all hospital deaths received an autopsy.
The autopsy rate began plummeting in 1971, after the Joint Commission (an independent nonprofit that provides accreditation to hospitals and health-care facilities) eliminated its rule that hospitals needed to perform a certain number of autopsies to be accredited. Changes to the health insurance industry also put an increased emphasis on the economics of health care. Since autopsies cost, rather than earn, money for hospitals, budget cutters found them easy to eliminate.
“Pathologists don’t get paid for doing autopsies,” says Sally Aiken, medical examiner for Spokane County, Washington and president of the National Association of Medical Examiners (NAME). “It’s become a self-fulfilling prophecy. So if you haven't seen an autopsy on one of your patients or you aren't familiar with that process, you're not going to request an autopsy.”
Meanwhile, physicians became increasingly reliant on sophisticated diagnostics like MRI and CT scans. This has led to overconfidence in the accuracy of their diagnoses, says Fowkes, who is also a spokesperson for the College of American Pathologists. She points to research showing that autopsies still play a vital role in determining cause of death, including a 2003 study in the American Journal of Forensic Medicine and Pathology that found the official diagnosis of death was wrong in 28 percent of the 429 reviewed cases.
In addition, Fowkes says that family members can be hesitant to consent to an autopsy. Some fear the body will be disrespected, whereas others think the procedure will essentially mutilate the person they loved. Neither are true, Fowkes says, but it’s not easy to convey this to a grieving family.
So Fowkes will take the time to explain the process of autopsy, including the external examination of the body, measuring and weighing internal organs, collecting blood and tissue samples for further testing, and a review of medical records and (if necessary) interviews with family and friends to determine cause of death.
Fowkes considers the people she autopsies to be her patients, just like any other physician would. The fact that they have died is beside the point.
At the other end of the spectrum are families like the Calloways, who desperately want an autopsy but can’t get one, and those who don’t trust the results of the autopsy they did receive. It’s here where private companies like Hererra’s 1-800-AUTOPSY step in.
From 1979 to 1984, Herrera served as the field deputy coroner-investigator for Los Angeles County, so he had a front-row view of the autopsy decline. He founded his company in 1988, after a severe back injury forced his retirement from the city medical examiner’s office. He had spent his entire career working in pathology and couldn’t imagine doing anything else.
Because Herrera never attended medical school, he can’t perform autopsies on his own. As a result, he relies on an ever-shrinking pool of pathologists to pitch in. Herrera’s proximity to Hollywood has also meant that movie and television directors often seek his expertise. He tries to keep the on-screen depictions of his job as accurate as possible but says it’s hard for scriptwriters and directors not to sensationalize his role, potentially fueling negative public perceptions.
According to NAME, the number of private autopsy companies is continuing to rise and shows no signs of stopping, although the organization doesn’t keep an exact tally. Aiken says that the total number of private autopsy companies in the U.S. isn’t clear because some forensic pathologists may have a part-time private practice or act as consultants on an as-needed basis. Others are contracted to fulfill autopsies for hospitals or coroner’s offices.
Their services aren’t cheap. A private autopsy can cost upward of $10,000 and isn’t covered by insurance, but many families find the peace of mind worth the price. Tony Calloway’s daughter, Katie Galarza, started a GoFundMe campaign to pay for a private autopsy for her aunt, Angela, and members of the community have contributed more than $7,500 to date.
COVID calls for more autopsies
The coronavirus pandemic has helped to expose the ripple effects of the country’s autopsy decline. As cases surged in New York, Fowkes found her office at Mt. Sinai overwhelmed. Among her staff of 22 pathologists, only four (including herself) volunteered to autopsy coronavirus patients. Pathologists performed these procedures at great personal risk of becoming infected with COVID-19, because they believed in the importance of their work and its ability to save lives. (Here's how scientists know COVID-19 is way deadlier than the flu.)
The results speak for themselves. Autopsies of COVID-19 deaths have revealed how the lungs of victims fill with fluid, leaving their bodies unable to get enough oxygen. They showed how the virus can cause brain damage and deadly blood clots. Pathologists in New York are studying autopsies of children who died of an unusual complication of COVID-19 to understand how an overwhelming immune response set off by viral infection can prove deadly.
And a review of deaths in California pushed back the date of the first American coronavirus fatality by three weeks, to February 6. In this case, a woman died of a massive heart attack brought on by infection with the coronavirus. These kinds of details can be found only via autopsy, and it’s why Fowkes and Herrera remain so committed to their profession.
“If physicians [had] been doing autopsies regularly,” Herrera says, “they would have caught [the] virus’ spread sooner.”
But problems with testing availability, especially acute in the early stages of the pandemic, left some pathologists unable to even test whether the deceased was infected. Tests were so rare and valuable that they needed to be saved for the living. Now that researchers know more about the virus, guidelines from the Centers for Disease Control and Prevention have changed and advise against routine autopsy, to protect medical personnel from infection. It’s a risk-benefit calculation, says Aiken, of Spokane County.
“The cases were also trickling in at a slow enough rate that we were able to absorb those numbers to learn new information,” she says. (Here’s what we'll need to find the true COVID-19 death toll.)
Tony Calloway says he respects these kinds of decisions, although he still doesn’t understand why his sister didn’t receive an autopsy. Aiken points out that each medical examiner’s office may have its own internal rules that guide these decisions.
Angela’s private autopsy revealed that she had symptoms consistent with COVID-19, including fluid in her lungs, a rash on her back, and blue nails—a sign her body couldn’t get enough oxygen. The pathologist also sent tissue samples off for more detailed testing, the results of which are still pending, but the evidence so far was enough to get Angela’s death certificate amended to read “acute respiratory failure of possible infectious etiology.”
Herrera feels that cases like this are where the art and science of autopsy can really shine.
“I feel for these families because they just need to know what happened. They say, ‘I can’t rest, I can’t sleep. I just need to know what happened,’” Herrera says. “The dead must be protected and given a voice.”