Wall Street Journal, Tuesday, March 10, 2015, PERSONAL JOURNAL section, Front Page Top, Page D1, Health & Wellness:
What Autopsies Can Teach
A decline in postmortem exams has slowed scientific advances. New procedures aim to overcome qualms.
The autopsy room at St. Luke’s Hospital in New York in 1896. The hospital is now part of Mount Sinai Health System. PHOTO: THE MUSEUM OF THE CITY OF NEW YORK/ART RESOURCE, NY
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Medical mysteries lurk in every family, yet the autopsies that could reveal them have become increasingly rare.
Although coroners and medical examiners still investigate suspicious deaths, fewer than 5% of people who die in hospitals are autopsied today, down from 50% in the 1960s, according to government surveys. The decline in autopsies has slowed scientific advances in diseases including cancer, dementia and heart disease, researchers say. It also has left some surviving families in the dark about medical issues that could affect their own health.
Studies routinely show that when autopsies are performed, 10% to 30% reveal previously undiagnosed medical issues. Such discoveries can provide valuable information to survivors even years later.
Sarah Friend was a seemingly healthy 12-year old when she suddenly collapsed and died at a water park in North Richland Hills, Texas, in 2004. An autopsy revealed she had hypertrophic cardiomyopathy, or HCM, a hereditary thickening of the heart muscle whose first symptom can be cardiac arrest.
The medical examiner urged Sarah’s family members to be checked for the disease. None showed signs of it at the time, but when a genetic test for HCM became available in 2008, Sarah’s mother, Laura, learned she is at risk and now gets her heart checked regularly. Mrs. Friend says her grandmother and uncle also died of heart problems, both without autopsies. “I keep wondering, could we have found this earlier?” she says.
The decline in autopsies has many explanations. Rules that required hospitals to autopsy 20% to 25% of deceased patients to maintain their accreditation were lifted in the 1970s. Neither Medicare nor private insurance cover autopsies, which can cost $2,000 or more. Grieving family members are often too upset to ask about it. And many doctors don’t suggest it, in part because they think modern imaging and lab tests have revealed all they need to know about a patient’s cause of death.
“We think we always know what’s going on inside our patients, but that’s a fallacy,” says Dylan Miller, who chairs the autopsy resource committee for the College of American Pathologists. “There’s as much to be gained from an autopsy as ever.”
Not every death would benefit from an autopsy, and some families remain opposed to the idea for religious or other reasons. Even when patients themselves leave written requests to have their body autopsied or donated, most states require formal consent from their next of kin.
“People often say they are open to learning more medical information, but they’re still afraid of the concept of their loved one being cut open,” says Lisa Salberg, chief executive of the Hypertrophic Cardiomyopathy Association, an advocacy group that helps families cope with the disease, which afflicts about 1 in 500 Americans. “But we can learn so much from the people we’ve lost.”
Sarah Friend, photographed here at age 10, died suddenly two years later and an autopsy revealed she had a genetic heart disease. Sarah’s family members got tested for the disease, hypertrophic cardiomyopathy, and her mother, Laura Friend, now gets her heart checked regularly. PHOTO: LAURA FRIEND
Some teaching hospitals still perform autopsies, in part to help train pathology residents. “If there’s something we missed, we’d like to know, and we’d also like to know when we are right,” says Barbara Crain, director of the autopsy service at Johns Hopkins Medicine in Baltimore, which offers the postmortem exams to any patient who dies at one of its four affiliated hospitals, at no cost, if the family requests it.
Private services and some medical-examiners’ offices also perform autopsies for families seeking them. A private autopsy “can help a family manage a lot of emotion,” says Ben Margolis, director of the Autopsy Center of Chicago, where autopsy services start at $2,500. “If they are feeling guilty or angry or confused, it may help to hear that the tumor was very advanced and there was nothing more anybody could do.”
Some researchers hope alternative forms of postmortem investigations could increase interest. These include partial autopsies of individual organs, and virtual autopsies, which examine bodies with MRI or CT scans without dissecting them. While such imaging is useful for locating bullets and identifying broken bones, it can cost as much as conventional autopsies and cannot definitely determine a cause of death, some pathologists say.
Mount Sinai Health System in New York City plans to offer “minimally invasive” autopsies, which use very small instruments to remove targeted tissue samples for further study. Pathologists there hope this will be less costly and more acceptable to families than traditional open autopsies.
Pathologists say some of the most useful information comes from “molecular autopsies,” which combine traditional postmortem exams with DNA tests. Observing how genetic abnormalities played out in a patient’s body and in symptoms exhibited in life can provide families and researchers with a complete picture of hereditary disease, says Joseph Maleszewski, a cardiovascular pathologist at the Mayo Clinic in Rochester, Minn., which autopsies about 25% of patients who die there.
Mayo’s tissue archive keeps autopsy samples indefinitely. “If the family ever comes back to us and says, ‘I have this disease. Can we look for evidence in my mother or father or grandfather?’ we can pull that archive and see,” Dr. Maleszewski says.
Even when the cause of death seems apparent, autopsies can reveal valuable information, pathologists say. A 2008 study of 54 sudden deaths outside hospitals that were attributed to coronary artery disease found that half were caused instead by other heart issues.
Learning whether a relative died of a hereditary heart problem or a condition more related to lifestyle and diet “sets a family on a different course and each is helpful,” says Dr. Margolis.
Alzheimer’s disease can only be definitely diagnosed by an autopsy, which may find that a patient had a different form of dementia. Vascular dementia, for example, occurs when mini strokes and blockages reduce blood flow to the brain. Knowing that can help family members evaluate their own risk and take steps to reduce it, such as maintaining a healthy blood pressure.
Some Alzheimer’s research centers welcome donations of deceased patients’ brains, which can help scientists learn how the disease progresses and inform diagnoses and treatments for others. Donors’ families can get autopsy reports in return.
“Autopsies in general are on the downswing, but brain autopsy is increasing. People are scared and want to do something,” says Arlene Lawton, a registered nurse who runs the brain donation program at Columbia University Medical Center in New York. She says families often call about donating when a loved one is in the terminal stages, which is too late. Patients must be able to undergo memory and neurological tests while still living, she says, so researchers can correlate their symptoms with brain changes after death.
Autopsies of cancer patients can also yield valuable information about how individual cancers spread and change in terminal stages. Researchers can also grow new living cancer cells from tumor samples and use them to test new therapies. But it is often crucial to obtain such tissues within a few hours of death, before DNA degrades, so some hospitals have set up “rapid autopsy” programs to get consent from patients and family members in advance.
“Families respond well” to such requests, says pathologist Jody Hooper, who runs the rapid autopsy program at Johns Hopkins. “It’s something good that can come out of this terrible thing that has happened to their loved ones.”
Sally Ford, of Baltimore, says her husband, Michael, who died of melanoma in 2013, wanted his doctors at Johns Hopkins to understand and learn from his disease. “He had joined a clinical trial knowing that it might not help him but might help other patients down the road,” she says. Donated tissue from his cancer became part of a melanoma-research project that is still going on today.
Write to Melinda Beck at HealthJournal@wsj.com
