Medical teams have long rushed to save the living. Now, increasingly, they’re rushing to attend to the dead.
A small but fast-growing number of hospitals are embracing procedures known as “rapid autopsies” — conducted in the hours immediately after a patient’s death.
The idea is to obtain tissues from tumors before they start significantly degrading. Using genetic analysis technology, doctors can then determine precisely how cancer cells survived every attempt to kill them.
But the procedures are forcing doctors and patients to overcome their reluctance to discuss death, and family members to confront the idea of parting with loved ones’ bodies shortly after their death — within six hours, optimally.
If relatives agree, pathologists are given an opportunity to explore the body more widely for tumors and take more tissue to analyze than when a patient was alive. They can also keep the cancer cells alive in perpetuity in hopes of finding new ways to shut them down.
“There’s horrible poetry to the idea that your tumor lives longer than you do, but that’s what happens with this,” said Dr. Jody Hooper, a pathologist who runs the rapid autopsy program at Johns Hopkins Medicine. “Tissue has become the holy grail.”
Hooper spoke by phone last week from a meeting of North American pathologists, where representatives from other major hospitals were seeking advice on how to set up similar programs. So far, roughly 10 hospitals conduct the procedures.
Hooper is the only pathologist to perform rapid autopsies at Hopkins, and she’s been busy, performing at least seven in the past 10 weeks as more researchers and patients sign on.
The logistics can be complicated.
Doctors discuss the procedure with patients, but in most states, it’s the surviving family members who must consent to the procedure.
Patients and family members can limit the scope of the autopsy however they wish, though Hooper said she “always makes some kind of incision. And I encourage families to consent to a full autopsy, because sometimes I can find tumor sites that don’t come up on imaging.”
If the patient dies outside the hospital, Hopkins arranges transport for the body. Hooper is available for autopsies seven days a week between 5 a.m. and 11 p.m.
Hopkins doctors typically broach the subject with patients while they are introducing the prospect of hospice care. But it also helps to have doctors trained in having the conversation, said Dr. Dejan Juric, a research oncologist at Massachusetts General Hospital in Boston.
“Autopsies are often talked about in negative terms, but if you ask to donate tissues that can help thousands of other people, almost everyone says yes,” he said.
Around 2011, Juric began treating a woman in her early 60s with breast cancer. She died in 2012 after tumors overtook her liver, bones, and lymph nodes. But before she died, Juric spoke with her and her husband about sampling her tumors to better understand what had eluded them during her treatment.
They consented, and a rapid autopsy later revealed how the mutant genes that drive certain cancers will, when initially thwarted by chemo or other therapies, mutate again into slightly different variants of themselves depending on where and when the distant cancer grew.
Juric’s findings were published in the journal Nature early last year. He subsequently helped identify an experimental drug, buparlisib, that targeted both the mutant gene that drove the initial tumor and the genetic cousins that drove distant metastases. (Juric, who has consulted for Novartis, the maker of buparlisib, is also developing new treatments to target these mutant gene families more effectively than past drugs.)
“There’s horrible poetry to the idea that your tumor lives longer than you do, but that’s what happens.”
Dr. Jody Hooper, Johns Hopkins University
Cindy Eid, whose sister died of breast cancer in 2014, recalled oncologists broaching the subject of a rapid autopsy with her in the days before her sister died.
Susan was not conscious at the time.
“I just instantly knew it was perfect for her,” Eid said, adding her sister would have wanted to help future patients. “Her philosophy was that if it’s experimental today, it could be a cure tomorrow. Or a treatment.”
Backed by a donation from Eid’s estate, Juric and Dr. James R. Stone, a Mass General pathologist, Mass General created a formal rapid autopsy program this year. The hospital now performs roughly two to three procedures weekly, compared with one every three or four weeks in previous years, and is exploring ways to offer them to patients who die outside the hospital.
The program will fuel one of the most significant trends in cancer research: the creation of what Juric calls patient avatars, the cell lines or mouse models derived from a patient’s tumor that can be used to test treatments for patients with similar histories.
Just as aviation researchers have saved countless lives by piecing together clues from airline disasters and helping design safer planes, oncologists like Juric believe they can analyze cells derived from a deceased patient’s tumor and develop better treatments for others in the future.
“We’d like to use these avatars to potentially design even entire trials, just using these patient-derived models,” he said. “We want to build platforms. Make cell lines. Mouse models. Have labs ready and hungry to analyze the tumors.”
“We need patients and families to embrace this, though. It looks at times like everything is lost when that patient dies,” Juric added. “But so many are left behind who will need these discoveries.”
Allen Lee, a 30-year-old software engineer in Somerville, Mass., who is being treated for Stage 4 lung cancer, said his doctor hasn’t broached the subject with him, but he would be willing to participate if asked — and if his family did not object. “In an already very emotionally stressful time, I wouldn’t want to put something even more distressing on them,” he said.
As an engineer, he said, he understands the philosophy of gathering information “even if you’re not sure what to do with it. You don’t really know where the gold is, so it’s better to try to get as much dirt as possible.”
“It’s other people doing this that helps me, and it’s me doing this that would help other people,” he said. “I just wish the answer could come in time to help me.”
I am interested in rapid autopsy at MGH. I have had both colon and Fallopian tube cancer. It would be great to contribute to your tumor study. Where can I get more information?….thanks, b
Thank you for doing this so people won’t die of every cancer in the future. My cousin just donated and I believe melanoma will have a good fight with you. Keep it up!!
Everyone who sees this article should look up “Henrietta Lacks”. Do you want to donate tissue only to further the careers of the privileged and allow hospitals, research institutions, universities, whole industries profit from your tissue without a dime to your name?
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