Autopsies were once standard procedure in hospitals. A few decades ago, doctors would recommend one even when the cause of death seemed certain because it allowed them to gauge the effects of treatments and find out to what degree a disease had progressed. But today, fewer than one in 10 deaths is followed by an autopsy, in part because of its additional cost and the possible observation among close relatives that the patient has “suffered enough.” It is difficult because autopsy decisions usually have to be made at a time when family members are already feeling vulnerable and overwhelmed. Likewise, many doctors believe — erroneously — that modern imaging techniques such as the MRI have rendered the autopsy obsolete.
Yet, autopsies still provide one of the best ways for doctors to learn how to improve their practice of medicine. “Autopsies could reveal that, unbeknownst to practitioners, a certain disease presents differently than people think,” says Kaveh Shojania, MD of the University of Ottawa who co-authored a February 28, 2008 article in the New England Journal of Medicine expressing concerns about the vanishing autopsy. For instance, a tear in the wall of the aorta — known as an aortic dissection — can easily be mistaken for a heart attack, as was the case for actor John Ritter. Though a jury found that his doctors were not to blame for Ritter’s death, the case drew new attention to the condition’s warning signs.
An autopsy, Dr. Shojania says, might also show that a medical device or procedure did not work as well as the doctors had thought, as what happened recently when autopsy studies helped reveal that some drug-eluting stents, used to keep arteries open after blockages, did not perform as well as expected. Or, they can offer clues about the spread of disease. In 2004, autopsies showed that four transplant patients at Baylor University Medical Center in Texas had caught rabies from the same infected organ donor.
But if and when an autopsy has been decided, there are a number of things the family members should bear in mind. Make sure that the pathologist who will perform it is qualified — preferably certified in anatomic or forensic pathology by the Philippine Board of Pathology. Ask in advance what types of tests and examinations will be done. A standard autopsy covers all major organs, but additional exams or tests may be done to confirm certain conditions. The more complete the autopsy, the more complete the information it will provide. But you always have the option to limit the autopsy to only certain organs or tissues. For instance, you may choose a brain-only autopsy if you’re looking strictly for Alzheimer’s.
The Benefits Of Autopsies
Today, the few autopsies that take place usually occur because of medico-legal concerns. Deaths that are unexplained, unnatural, or happen during surgery or shortly after admission to the hospital, must be reported to the authorities who will then decide whether to require an autopsy. As noted by many pathologists, autopsies are seldom ordered if the person is older than 60 and there’s no evidence of foul play.
With few doctors pushing for autopsies, it’s up to the family to request them — and Elizabeth Burton, MD, a pathologist at the Institute for Health Care Research and Improvement at Baylor University Medical Center, says she’s seeing more and more families do just that. Hard statistics are difficult to come by, but pathologists (at least in the US) say that demand is growing, partly because popular television shows such as CSI have raised awareness about the kind of information that an autopsy can provide.
An autopsy will generally provide additional information about the cause of death and it may also turn up previously unknown information about the deceased’s health issues. It’s not unusual for an autopsy to uncover previously unrecognized medical conditions, and in some cases, if the disease has a genetic basis, these may have implications for survivors.
“Study after study has shown that 20 to 30 percent of autopsies will come up with a significant medical condition that was not known during life,” says Michael Dobersen, MD, a member of the College of American Pathologists’ Autopsy Committee. For instance, a 2002 report published by the Agency for Healthcare Research and Quality found that autopsies turn up errors that might have affected prognosis about 10 percent of the time. The same report said that autopsies found substantial inaccuracies in eight to 23 percent of diagnoses listed as causing or contributing to death.
Someone who died of cancer might have had advanced heart disease, too — and that knowledge can help family members understand the risks that they may also face. Autopsy information can also be useful in cases where the person who died had experienced severe memory loss, says Debra Cherry, executive vice president of the Alzheimer’s Association in Los Angeles. Autopsy remains the only definitive way to determine whether the symptoms were because of Alzheimer’s disease or another form of dementia. “An autopsy can give you more clarity,” she says. “Many people just want to know. It gives them a sense of control to know that the person has a confirmed case of Alzheimer’s. Sometimes they learn it wasn’t Alzheimer’s but vascular dementia related to small strokes.”
The distinction matters, because surviving family members can take steps, through diet and exercise, to reduce their own risk of strokes and stroke-related dementias, and scientists continue to seek tools to help prevent Alzheimer’s. Sometimes, too, an autopsy can rule out a diagnosis that might have affected family members. Cherry recalls one family whose loved one was suffering from dementia with Lewy bodies, a condition that can cause delusions and hallucinations that can be extremely disturbing to bystanders. Some of the patient’s relatives could not shake the suspicion that schizophrenia might run in their family. An autopsy confirmed that the symptoms were because of the dementia with Lewy bodies, not schizophrenia.
The Need For Closure
Often, an autopsy offers solace to survivors. “The biggest reason families want them done is that they really want to make sense out of what happened,” Dr. Burton says. “It can really help with closure.” One family member told her, “The pathologist said it probably happened very quickly. It’s nice to know that she wasn’t suffering for a long time. We find peace in knowing that.”
I personally recall one case wherein the family was also able to find comfort in the result of the autopsy. This involved an elderly woman who died after surgery for a broken hip. She had been diagnosed with cancer earlier and the autopsy showed that the cancer had spread to nearly every organ of her body. “When we saw the results, it was easier to accept her death and somehow easier to think that sooner was better after all,” a daughter told me.
Guilt can sometimes be assuaged. “Parents who had kids that died need to know that it wasn’t their fault,” Dr. Burton says. “It happens with husbands and wives and other family members, too. They think, “If I’d made sure he went to the doctor, I could have prevented this,” but more often than not, the autopsy shows it would have happened anyway.
If doctors are reluctant to order autopsies, Dr. Shojania says, it also might be because they feel confident in their diagnoses or worry that an autopsy might find something that will open them to litigation. But studies show that autopsies help doctors far more often than hurt them. A 2002 study published in the Archives of Pathology and Laboratory Medicine found, for example, that autopsy findings rarely were at the crux of medical liability decisions. Even when a significant discrepancy existed between the autopsy diagnosis and the clinical diagnosis, and the unrecognized condition was deemed treatable, the defendant physicians were usually exonerated. “It doesn’t seem to be the case that people are happy with their medical care and then get autopsy and then they want to sue,” Dr. Shojania says.
But with some doctors still hesitant to promote autopsies, it falls on the immediate relatives to request them. Ultimately, the decision is a personal one that only you, as a family member, can make. Hopefully if you do, it could provide you the answers and the peace of mind.