Autopsy and the Need for Reassurance

A New York Times reporter writes about the experience of her sister's death and not pursuing an autopsy. She also reports on Dutch research of family members' experiences with autopsy (from Family Practice). Based on the details provided, the author's sister died after what sounds like an unfortunately precipitous infectious disease and multisystem organ failure. A week before she died, she had seen a doctor, was sent home, then returned to the hospital the following day critically ill. After the death, a nurse (not a physician ?!?) approached the author and another sister to discuss autopsy, which they declined. The author later regretted not pursuing an autopsy because she had unanswered questions about the cause of death. She states that initially, this decision was made because they had "had enough" and because "it wouldn't bring her back." (These seem to be the amongst the most common reasons cited when I discuss autopsies, along with, "I don't want to put him/her through that.") But then, she goes on to discuss further:

Another reason, I realized later, was a vague, underlying sense of distrust. We weren’t confident that the hospital could provide a thorough and competent autopsy, and even if it could, we didn’t trust the doctors to tell us the whole truth. It was an unfair judgment. But we were distraught.

In other words, either a) the hospital's pathologists may be in cahoots with the potentially negligent treating physicians or b) hospitals with potentially negligent treating physicians may also have negligent pathologists (this is the "reverse halo effect" or "devil effect"). She writes about the missed opportunity to pursue independent review by an outside pathologist, and talks with a pathologist, Dr. William Manion, who does "private" autopsies. Dr. Manion does, fortunately, refute the hypothesis that a hospital's pathologists might "protect" the treating physician by giving a dishonest pathological evaluation.

On request, he'll also perform an independent review of medical records and autopsy results.

Some clients hire him because they want to sue doctors, he said in an interview, but others are just looking for peace of mind. Some are upset because they feel doctors didn’t take the time to explain what happened. “A lot of times people just feel guilty themselves that their loved one died,” Dr. Manion said. “They blame themselves that they didn’t get them help sooner for an alcohol or drug problem, and I say, you can’t help an alcoholic or an addict. I try to explain to people, this isn’t your fault.”

Which makes me wonder, since a nurse discussed the possibility of an autopsy with the author, did the author have much of a chance to discuss her sister's condition with the treating physicians or her primary care physician? Was there any chance for her to go back later and revisit unanswered or new questions weeks or months after the death?

Plenty has been published on the positive effects of good communication in the ICU. One of the most prominent studies was discussed here. Also, better communication has been associated with reduced malpractice claims. One might hypothesize that better communication leads to more appropriate use of autopsy and that both will help with the bereavement process. If true, the mechanism may be through providing families with answers to unanswered questions and reassurance but also offering the opportunity for a physician to provide bereavement support at the time of autopsy review. Could the autopsy thus reduce attempted lawsuits in some scenarios? (This might seem paradoxical to those that fear an autopsy might provide "ammunition" to families and attorneys.)

The Dutch study proposes that the best physician to review the autopsy with loved ones is the general practitioner/primary care physician, but they note that in the US, it is standard procedure for the pathologist to discuss with family. (I must confess that I did not know this.) Given the fragmented nature of our medical system and the fact that primary care itself is on life-support in this country, perhaps this division of labor is appropriate. However, it seems to me that one of the treating physicians might be in the best position to discuss autopsy results in most cases. What role should palliative care physicians play in discussing autopsy results? I would imagine there is variability depending on practice setting and local norms and would be curious to hear about the experience of others. While it's infrequent for my patients to receive autopsies, I would estimate that I've discussed results with families in about a third of those cases (amounting to 1-2 per year).

The Times has an associated question/answer section with two pathologists entitled, "Should You Have an Autopsy Done?" with several comments and questions from physicians.

(Image The Anatomy Lesson of Nicolaes Tulp, by Rembrandt courtesy of Wikipedia.)