Katie Scully had endured the loss of a 3-month-old girl and suffered a miscarriage. Now, in the eighth month of her latest pregnancy, she hadn't felt the baby kick for hours. She almost held her breath as the doctors strapped the monitor around her stomach. There was nothing -- no movement, no heartbeat.
Scully and her husband, Steve, wondered if they were cursed. They wanted to know if they had passed on some genetic defect to their stillborn son. They asked for an autopsy.
"To suddenly not feel any life," said Katie Scully, 33, "it was like, what happened here?"
For two centuries, autopsies have been the ultimate way to answer that question. But fewer and fewer families and doctors are relying on them. Thirty years ago, about half of all U.S. hospital deaths were autopsied, compared to as few as 10 percent today in teaching hospitals and 1 percent in community hospitals.
Forgoing that final examination means families lose a piece of their medical histories. Society, too, is losing the truth. Without an autopsy, physicians get the cause of death wrong about 40 percent of the time, medical studies show. Incorrect death certificates skew vital statistics. Doctors miss new diseases. Murders are buried.
Dr. Hugo W. Moser, a researcher in neurodegenerative diseases at Baltimore's Kennedy Krieger Institute, laments the situation: "Autopsy is the only way to find some of the answers."
Dissections of human bodies have been done for thousands of years, mostly for religious reasons or to learn human anatomy. It wasn't until the early 1700s that doctors realized illness was directly related to observable changes inside the body. Eventually, autopsy was considered as important as diagnosis, and historians credit it with ushering in the modern era of medicine.
Dr. William Osler, the legendary chief physician at Johns Hopkins Hospital, championed autopsies when he arrived about 1900, making them routine and often performing them himself.
According to a published history, just before Osler died at age 70, he left detailed notes for his own postmortem. "I've been watching this case for two months," said Osler, "and I'm sorry I shall not see the postmortem."
The verdict: bronchopneumonia. Osler's diagnosis was correct.
Some physicians dispute Osler's view that the autopsy is the final word. They say a doctor who cares for a patient for a decade knows that person better than a pathologist who never met him. But experts say the value of autopsies cannot be denied.
In a study published in October's Journal of the American Medical Association, researchers at Louisiana State University Medical Center compared a decade's worth of autopsy and death certificate data. They found that 44 percent of malignant cancers had been either misdiagnosed or undiagnosed.
"It was shocking," said Dr. Elizabeth C. Burton, a pathology resident and lead author on the study. "I just couldn't fathom how this could happen."
Around the country, pathologists say they see such errors all the time.
One woman's brain cancer turned out to be abscesses from the gum disease gingivitis, recalled Dr. Gregory J. Davis, Kentucky's state medical examiner. At Johns Hopkins Hospital, surgeons found that a patient believed to have lung cancer instead had tuberculosis throughout his body, said Dr. Barbara J. Crain, an associate professor of pathology and director of Hopkins' autopsy service. In another recent case, a patient believed to have heart failure turned out to have lymphomas.
"We continue to get surprising answers with autopsies where the diagnosis made during life turned out to be all wrong," said Moser. In about 10 percent of the cases where there is a discrepancy, studies have found the misdiagnosis affects quality of life or survival.
For certain conditions, an autopsy is the only way to confirm the diagnosis, or to see the extent of a disease. By revealing hereditary illnesses like early heart disease, postmortems serve as a warning to family members.
Looking for answers
As a nurse, Katie Scully knew the value of an autopsy. But when her red-haired, 3-month-old daughter, Carolyn Elizabeth, died suddenly in 1994, she and her husband feared an autopsy would mutilate the infant. They didn't want to let her go.
"I was numb. I couldn't even believe she was gone, and they were asking for an autopsy," said Katie Scully. "It was so fast and abrupt." The doctors, believing the case to be caused by sudden infant death syndrome, didn't push the matter.
But when the Northern Virginia couple lost their unborn son, Jack, two years later, they worried that the two deaths might be linked. Only the day before his death, Katie Scully had listened to his strong heartbeat at a routine pregnancy check-up.
"We just couldn't believe that we would have to bury two children," Steve Scully said. "There was no question. We knew almost immediately after the initial shock that we had to have the autopsy."
Doctors concluded there were no genetic defects, and that the stillbirth was caused by the umbilical cord strangling the baby.
"As awful as that was, we felt like we can try again and have a healthy child," Katie Scully said, "and we did, and we have our Danny."
Daniel Christopher is now 14 months old. The Scullys also have a 4-four-year-old daughter, Mary Cate.
Carolyn's clothes, her plastic duck rattle and stuffed dog, Scruffy, are tucked away in a hope chest, along with gifts for their stillborn son. Both parents now wish they had had an autopsy performed on Carolyn. They wonder what it might have found. Perhaps it might have advanced science, or helped prevent another family's grief.
An autopsy can take three to four hours. Pathologists do an external exam of the body, examining every lump and scar. Next, making a Y-incision from the shoulders down, the physician performs an internal exam, exploring the neck, chest, abdomen and pelvis, and then checking and biopsying each organ. The head is cut open in the back, so the brain can be examined.
Autopsies are distorted by myths and misunderstandings -- that the face of the deceased person is peeled back, that the body is mutilated. In fact, families can still have open caskets, funeral services are seldom delayed, and postmortems are done in the serious, sterile atmosphere of an operating room.
An autopsy is the final medical procedure. Some call it the ultimate quality-assurance method.
"The autopsy is the gold standard," declared Kentucky's Davis.
It was in the autopsy room where doctors first demonstrated that the appendix could be a source of infection, and where they traced heart failure symptoms to specific lesions. Autopsy studies enabled physicians to discover the delayed effects of radiation in victims of the Hiroshima and Nagasaki atomic bombs. Since 1950, autopsies have led to the discovery or explanation of more than 90 conditions, including Legionnaires' disease, Creutzfeldt-Jakob disease, viral hepatitis and toxic-shock syndrome.
"You can actually save lives via autopsy," said Dr. John Pless, president of the National Association of Medical Examiners and a professor of pathology at Indiana University School of Medicine.
In the case of a rare disease like adrenoleukodystrophy, or ALD, a single autopsy can lead to a breakthrough.
When Howard Brazeal died on a September night in 1978, the serious, brown-eyed boy was just shy of 10, and the neurodegenerative disease had wasted him to 25 pounds. Months before, knowing their son would die, Paula and Ron Brazeal had agreed to an autopsy because scientists knew so little about the incurable condition.
Howard's autopsy yielded a crucial clue that led to the first treatment for ALD. When the Illinois couple's younger son, Tim, was later diagnosed with ALD, he benefited from the treatment, although he eventually died.
"The research hadn't gone far enough to save Tim, but what if it had been enough?" said Paula Brazeal. "If we don't give them [scientists] the tools, how are they going to learn? How are they going to cure these dreaded diseases?"
Lack of training
Primarily because of technological advances, autopsies are no longer a part of the culture of medicine.
A generation ago, performing an autopsy was a rite of passage for medical students. Today, most doctors never see an autopsy, or perform one, either in medical school or residency. Even those physicians training to be pathologists are doing about a quarter the number of autopsies that their predecessors did. Physicians aren't schooled in how to talk with grieving families, or how to fill out a death certificate.
"The first time [residents] get a death certificate, they're on a ward, and a nurse hands it to them and says, 'Here, fill this out,' " said Dr. Randy Hanzlick, a death certificate expert and forensic pathologist at the U.S. Centers for Disease Control and Prevention.
Many death certificates state only "cardiac arrest" or "stopped breathing" as the cause of death. The forms do encourage physicians to give underlying reasons, but officials say they are often incomplete or don't make sense. Ultimately, these unreliable death certificates are tallied into the nation's vital statistics, and some illnesses appear more or less prevalent than they are.
Many physicians believe that autopsies became less necessary because of advances in imaging technology over the past 15 to 20 years that have revolutionized diagnosis and treatment. Using these tools, many doctors believe they know the cause of death ahead of time. The new spiral CT scan, for instance, gives physicians a faster and safer way to catch the potentially fatal pulmonary embolism.
Even with new imaging techniques, experts say diagnoses are often wrong. In a 1994 editorial in the American Journal of Medical Quality, Dr. John Williamson, an internationally recognized researcher on medical quality, cited studies that showed about half of patients in rural areas, and a third of patients in academic medical centers, got a wrong diagnosis. Williamson blames specialists and subspecialists, as well as generalists, for not keeping up with medical advances.
There are money issues, too. Insurers, with the exception of Medicare, won't pay the $2,000 to $3,000 cost of an autopsy, so hospitals must absorb the expense. Some new hospitals aren't building space to perform autopsies, or even to store bodies, Davis said. And pathologists are paid the same amount, no matter how many autopsies they perform. Their colleagues, fearing malpractice suits, aren't pushing for postmortems either.
State law dictates that any person who died under unusual circumstances, including in a hospital, should be autopsied. Dr. John E. Smialek, Maryland's chief medical examiner, handles those cases.
But there is no penalty in Maryland law to enforce this, and some lawyers say it's not being followed. New requirements
There are some signs of change, however. Private companies, like Autopsy/Post Services Inc. in Southern California, serve families who want to know exactly what their relatives died from or if they received proper medical care. At Emory University School of Medicine in Atlanta, autopsy rates have increased by 30 percent through creation of a monthlong autopsy stint for residents and improved communications among families, doctors and pathologists.
At Johns Hopkins Hospital, doctors are required to ask every family if they want an autopsy. Crain, the director of Hopkins autopsy service, said the Hopkins School of Medicine has reinstated a requirement that medical students witness an autopsy.
(The University of Maryland School of Medicine encourages senior medical students and residents to watch autopsies or be trained how to perform one, but physicians said it is not required.)
Other proponents are pushing for regulatory agencies to require hospitals to perform a certain number of autopsies. Years ago, the Joint Commission on Accreditation of Health Care Organizations dropped its mandate that 20 percent to 25 percent of hospital deaths be autopsied. Other federal and state agencies don't specify an amount either. Dr. George D. Lundberg, the former editor of Journal of the American Medical Association, calls this "shameful."
"If important steps like these were taken," Lundberg wrote in an October editorial, "we'd see a rapid return to a hospital culture that values medical truth rather than values hiding it."
Many times, the decision comes down to an awkward conversation between two parties who, increasingly, don't know each other well: a physician who is uncomfortable talking about death, and a family member overwhelmed with grief.
It doesn't have to be that way.
The Brazeals, whose two sons had ALD, trusted their longtime neurologist, who always showed them their sons' test results and explained what they meant. So when it was time to talk about autopsies, the Brazeals believed what the doctor told them: that their sons would be treated with dignity, and that Howard and Tim might provide clues to this rare disorder.
In their own way, the autopsies brought healing.
The Brazeals found themselves paging through the autopsy report for each of their boys, reading it over and over. It was only then that they allowed themselves to feel the relief, the certainty, that yes, that adrenal gland was atrophied. Yes, our son did have ALD. Yes, we gave him the right medicine.
Yes, we did the right thing.
All obstetric, neonatal and pediatric deaths.
Families have the right to request an autopsy. Most hospitals will pay for them if the deceased was a recent patient there. Autopsies should not delay funerals or prevent open-casket services. Experts say families should request an autopsy in these cases:
All obstetric, neonatal and pediatric deaths.
Unexplained deaths that appear to be natural.
Unexplained deaths during or after dental, medical or surgical procedures or therapies.
Deaths from infections or contagious diseases.
Deaths of patients in clinical trials.
To help explain unexpected medical complications.
SOURCES: People's Medical Society, College of American Pathologists
Pub Date: 1/25/99