With the pain in his eyes and the terrible headaches growing worse, Dave Foster left his job in the United Arab Emirates to return to the United States for surgery on the tumor in his brain.
As a plane flew him toward Johns Hopkins Hospital, he typed out a message to his family.
“If anything happens to me, I want anything that can be donated to be donated to other people,” his mother, Alicia Foster, recalled him writing.
When Dave Foster died from glioblastoma a year later, at age 37, his family did what they could to ensure his wish was fulfilled. Within a few hours of his death at a Towson hospice facility, his body was transported back to Johns Hopkins so that a doctor could perform a procedure aimed at better understanding his disease so that others may one day have a better chance of survival.
Hopkins is at the forefront of a burgeoning movement of medical institutions embracing “rapid autopsies” — a procedure ideally conducted within six hours of a person’s death, before tissue start to significantly degrade.
Dr. Jody Hooper, director of the Legacy Gift Rapid Autopsy program at Johns Hopkins, said such autopsies are performed most often on cancer patients like Foster.
The procedure allows doctors to collect wide-ranging tissue samples from throughout the body and learn as much as possible about the disease that killed their patient. Researchers set out to gather still-living cancer cells and use them to analyze the ways the tumor was responding to treatment. Within a tight time frame, they collect samples that help them answer questions like, what made this form of cancer so aggressive? How did it spread?
“It’s kind of terrible in a way that your tumor lives longer than you do,” Hooper said. “But at the same time, that’s something we can use.”
Researchers can use the samples to grow cell lines, sequence DNA or RNA, and test potential treatments.
Doctors can’t always collect these kinds of tissue samples from living patients, particularly if their health is deteriorating rapidly and a biopsy procedure could be detrimental. Tumors also can grow in areas that are difficult to sample, such as the brain, or be spread throughout the body.
Roughly a dozen medical centers across the nation perform these procedures. There’s a map outside Hooper’s basement office, where colored pins denote the various hospitals that have rapid autopsy programs.
Little red markers represent Memorial Sloan Kettering, the National Institutes of Health and the University of Nebraska Medical Center, among others.
Hooper has begun fielding more and more calls from medical professionals interested in launching similar programs at their institutions. She said she thinks it’s spreading in popularity as doctors come to realize the “power of being able to take samples from everywhere and in larger amounts.”
“It’s also spreading because of the way families and patients feel about the opportunity to give back,” Hooper said.
Hooper has performed roughly 60 rapid autopsies since she started leading the Hopkins program in 2014, and that number is quickly increasing. She estimates the hospital now sees one or two a month.
Hooper gets to know some of the patients, meeting them in their hospital rooms to discuss the procedure before she eventually operates on their bodies once they’ve died. Those cases are especially meaningful, she said, because those patients look her in the eyes and explain how much they want to participate.
“These patients are passing the torch to us,” she said. “They have had their fight with cancer. We can carry on their fight, even after they’re gone.”
Rapid autopsies performed at Hopkins and elsewhere have helped doctors advance the battle against cancer.
The procedure has contributed to researchers’ work in successfully mapping out the lifespan of a pancreatic cancer cell. That’s important, Hooper said, as one reason pancreatic cancer is so lethal is that doctors struggle to identify it before the disease already has spread.
“If we can find the early markers,” she said, “we can treat it and prevent it.”
A tumor sample taken from a rapid autopsy also has contributed to the development of clinical trials for pediatric cancer patients.
Dr. Sameek Roychowdhury, a medical oncologist with The Ohio State University Comprehensive Cancer Center, said the power of a rapid autopsy is in giving researchers “a window to what happens when cancer becomes resistant.”
Many of the cancer patients who consent to rapid autopsy are participating in clinical trials, hoping to find a cure for themselves and eventually others. When the treatment fails, doctors want to know why and how to re-develop the drug moving forward.
“We are learning from these patients and studying novel mechanisms of resistance to novel therapies,” Roychowdhury said.
But rapid autopsies also present some logistical challenges. Because speed is essential to the procedure’s success, Hooper is on call at all times. Traffic conditions have to be taken into consideration. A blizzard once slowed down a body’s arrival.
It also means families have to prepare for the body of a loved one to be taken away rather quickly. Hooper said she assures families that they can take as much time as they need before the body is removed for the autopsy.
A 2013 study analyzing people’s perceptions of the procedure found some physicians are hesitant to discuss rapid autopsy for fear of “making the patient feel uncomfortable and reducing hope.”
One clinic staff member said: “I would be concerned approaching them [patients]; they are here for treatment, hope, survival, a cure and here we are talking about what to do with their body afterwards.”
Others cited concern about how a rapid autopsy would affect surviving family members.
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The procedure does not prevent a viewing at the funeral. The hospital incurs all expenses.
Alicia Foster said she and her son discussed the rapid autopsy program before he died. While no one in the family, least of all Dave, wanted to acknowledge the worst possible outcome, they felt it was important to be prepared.
It was hard to see her son’s body wheeled away just hours after he took his last breath, she said, but she knew it was what he wanted. It also was emblematic of the kind of man he was: generous, kind and always thinking of others.
His body was cremated eventually, and, over the past year, his family and friends have scattered the ashes in rivers and parks and on mountaintops across the world. There are pieces of him in France. Soon, a friend plans to take some of his remains to Antarctica.
“His spirit goes on and on and on,” his mother said.
She doesn’t know what research may eventually result from the tissue samples taken during her son’s rapid autopsy. But the potential for medical advancement by way of his donation represents another way his spirit continues to reverberate.
“If I can’t have him,” she said, “maybe some good will come of it.”