"He said that, since my dad had been enrolled in an Alzheimer's research program [at the University of California San Diego Medical Center], it was important that they follow up with an autopsy," says Sherry, who asked that her last name not be used. "We kind of wanted to know for sure about the Alzheimer's anyway, since it can be inherited, so we said OK."
The autopsy confirmed that Sherry's father had died from Alzheimer's, but many other families will never know such important medical information because they refuse to have autopsies performed on their loved ones.For this reason and others -- hospital accreditation no longer demands a minimum number of autopsies and their elimination helps save money -- the national autopsy rate declined almost 50 percent between 1972 and 1994, according to a recent study.
It's a trend with possibly serious repercussions, says the study's co-author, Peter Nemetz, an economist at the University of British Columbia.
And the repercussions can extend from families through medical education, care and research, all the way to public health.
"If someone dies of an exotic disease, with no autopsy we'll miss something from the public health perspective," says Nemetz, who has studied autopsy trends for several years.
There also are less sensational but still-important snapshots of public health that post-mortems provide.
"For instance," Nemetz says, "a few years ago, some pathologists started doing random autopsies on people killed in auto accidents. What they discovered from this was that a lot of young men and women had an inordinately high degree of clogged arteries. This is valuable information. . . we never would have found without autopsies."
In their study, Nemetz and his co-author, Dr. Elizabeth Burton of the San Francisco Veterans Affairs Medical Center, found this: While the number of deaths annually increased from 1.9 million to 2.2 million between 1972 and 1994, the autopsy rate declined from 19.1 percent to 9.4 percent.
The decrease has had a definite impact on medical education, according to Dr. Michael Fishbein, a pathology professor at UCLA Medical Center.
"When I became a pathologist 30 years ago, about one of every two patients who died in the hospital came to our lab," he says. "Now our residents see about one out of every seven patients. Our pathology residents aren't doing enough autopsies so they won't be as skilled as they have been in past years. Autopsies are important (because) they teach residents about disease, and if they don't see the disease process, it will impact on their learning of anatomy and pathology."
Autopsies also have traditionally helped track errors in diagnosis and treatment and served as the "gold standard" for measuring the quality of medical care, Nemetz and Burton say.
"Autopsies are our best tool to see how we're doing," agrees Fishbein. "We know that the error rate in diagnoses is still about 20 to 30 percent. We miss that many major diagnoses that could be treated. And with so many new drugs, we need to make sure patients aren't dying of new therapies."
In addition, autopsies can be critically important for families of patients with illnesses like Alzheimer's disease that science is still investigating, explains Dr. Eric Tangalos, a gerontologist with the Mayo Clinic in Rochester, Minn.
Few Alzheimer's patients undergo autopsies
When patients are enrolled in Alzheimer's programs or other research programs, "there's a great scientific loss if we aren't allowed to do an autopsy. The diagnosis of Alzheimer's disease depends on a number of criteria found directly in the brain, but only 1 percent of patients who die in nursing homes undergo autopsy," Tangalos says.
Families often resist requests for autopsies, Tangalos adds, because they think "patients are just too old, the doctors already know everything [about the disease], or they say, 'Mom's been through too much already.' "
Tangalos says he knows of no religion that has doctrinal objections to autopsies.
"There is no disfigurement that goes with autopsies," he explains. "And it doesn't take time away from funeral preparations. But people do need to be aware that the brain is not there at the time of burial [if the patient had Alzheimer's]. Some relatives say at first that they don't want pieces of Mom not going with her, but most people get over that. "
The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) once required hospitals to perform a certain number of autopsies based on size and other criteria, but the requirement has been dropped, Fishbein says. The cost of autopsies -- which ranges between $2,500 and $4,000 -- is picked up by the hospital, not the family.
"The costs of autopsies are immediate and very obvious and right up front," Nemetz says. "But the benefits are long-term and more difficult to measure. You can't put a money value on it easily. Hospital directors see only the costs, not the benefits."
Fishbein thinks the decline in the autopsy rate may be slowing. For instance, he says, the number of autopsies performed in 1999 at UCLA Medical Center increased by 80 to 250. The requests, however, came from families -- not doctors. And he thinks that's "because in this litigious society, there is more mistrust of doctors."
There also is renewed interest in autopsies by the JCAHO, he adds.
"They want to know what we're doing with all the statistics [on medical errors]," he says. "And at a teaching hospital, autopsies are a high priority for us. I think there's going to be much more interest in the future."
What To Do
To learn more about autopsies, visit Death and Dying, a Web site for families.
For some basic answers about autopsies, visit the American Academy of Family Physicians Web site.
For a list of centers concentrating on Alzheimer's disease research, visit this site.