The newly dead have stories to tell and lessons to teach. But we aren’t listening.
Autopsy, once a mainstay of medicine, is now often an afterthought. Fifty years ago, about half of people who died in hospitals in the United States underwent autopsy. Today, only about 1 in 20 do. Some new hospitals are even being built without a suite in which to perform autopsies. (I am focusing here on in-hospital deaths. Natural deaths that happen out of the hospital rarely come back for autopsy.)
This downward slide harms our understanding of disease and death. Autopsy should not, and need not, become extinct. Simple changes, such as those we have put in place at Mt. Sinai Hospital, may be able to reverse this trend.
What autopsies tell us
The amazing advances that have been made in CT and MRI imaging and in diagnostic testing make it easy to think we know exactly what is wrong with patients and what they die from. That often isn’t so.
When the cause of death determined by a doctor is compared to the cause determined by autopsy, the two differ more than 25 percent of the time. In spite of today’s technology, our ability to pinpoint the cause of death without an autopsy hasn’t changed much since the 1950s.
Knowing why an individual has died is vitally important for the practice of medicine. An autopsy can reveal diagnostic or treatment errors that may, or may not, have contributed to the individual’s death. Such feedback can help clinicians improve their diagnostic skills and approaches to treatment.
Autopsies can provide insight into how well particular treatments work. In a patient who dies from cancer, for example, a post-mortem examination can help identify whether his or her tumor responded to radiation or chemotherapy.
Autopsies can also shine a light on how various diseases affect the body and ultimately lead to death. They can help us tease out the causes of Alzheimer’s disease, autism, seizure disorders, schizophrenia, and other brain disorders, and explore how they respond to treatment. Rapid autopsies, done within hours of death, can remove tissues and cells with functional DNA that can be used to advance our understanding of complex diseases.
Autopsies don’t benefit just medical science. They can also provide peace of mind to family members by offering an explanation for unusual behavior, such as Alzheimer’s disease or chronic traumatic encephalopathy, or tell them why a loved one died suddenly.
For example, I once got a call from the daughter of a woman recently diagnosed with throat cancer who died soon after being admitted to the hospital for chemotherapy. After the first dose, she began having seizures and died despite attempts to revive her. The daughter was concerned about the care her mother had been given. During an autopsy, we identified a large metastatic tumor in the woman’s neck, damage to her heart from high blood pressure, signs of silent heart attacks, and the development of small masses in her lungs and brain (sarcoidosis). These findings helped explain the woman’s sudden death and reassure the family.
Promoting the autopsy
Some experts have sounded the death knell for autopsy. Others have raised “fresh hope” for it. The American Medical Association endorses the “fundamental importance of autopsy in any effective quality assurance program.”
Such statements are meant to promote the use of autopsy. But they haven’t translated into more autopsies. The only way to do that is to make everyone — doctors, patients, and family members — aware of the importance of this medical procedure.
Doctors are key to this effort. Many of them are uncomfortable asking a family member for permission to perform an autopsy — some are uncomfortable talking about death, others don’t want to intrude into the grieving process. But when the question about having an autopsy is posed respectfully, and ideally well in advance of death, most families are interested in moving forward with it, especially when they understand that this service won’t cost them anything.
For the past two years, I have been working to educate physicians, social workers, and others at Mt. Sinai Hospital about the importance of autopsies. We have also put in place a policy to ask all next-of-kin for permission to do an autopsy. These parallel efforts have helped boost our autopsy rate to 13 percent, significantly above the national average. Requests for minimally invasive or targeted autopsies may increase autopsy rates further, but will miss the rich array of findings from a full autopsy.
Conversations about end-of-life issues, once almost taboo, are becoming more and more common. The topic of autopsy often isn’t included. Adding it to these discussions can help provide peace of mind to families and physicians alike.
Mary Fowkes, MD, is director of the autopsy service and associate professor of pathology at Mt. Sinai Hospital in New York.