Managing loved ones’ expectations before the autopsy is critical. Ensuring there's ample time to privately review and explain the results can help bring meaning and closure to their loss.
Connecting with Patients | September 17, 2020 | 3 min read
By J. Stephen Nix, MD, Johns Hopkins Medicine
“I just want to know why he died.”
I knew her voice even though I’d never seen her face. Her young son died unexpectedly and she called every month because the autopsy results were inconclusive. This month she called for results of a specialized test.
The surgical pathology room was loud. I held the phone in one hand and with the other plugged my free ear. Glass slides clacked on microscopes. Wooden trays clattered onto preview stacks. A resident cursed at an overhead page. These were not the sounds a grieving mother should hear. These were the sounds of a medical industry that would continue despite her dead son.
I told her that the test results were back, but they were inconclusive. She had a copy of the autopsy report and we went through the findings again. “We’ll never know the exact cause of death,” I said, “but I promise there’s nothing you or anyone could have done for your son.”
A long pause held the line. Then she asked if there were any more tests available.
As a first year pathology resident, I received no training on how to talk with families about death or autopsies. I often reflect on how I could have better navigated the conversation with the patient’s mother. I regret that this grieving mother had to call a hospital operator to be patched to a resident in a busy workroom month after month until the day came when she stopped calling. I’m now cognizant of the importance of arranging a time without distractions to talk with family members about autopsy results, as well as the importance of setting realistic expectations for autopsy with the family beforehand.
There are many reasons that families request autopsies, but the most common reason is the hope of understanding why a loved one died. Unfortunately, unlike in movies and television, the medical autopsy may never answer the question of “why.” Medical autopsy is useful for the documentation of disease—atherosclerosis, stroke, food aspirated into the lungs and festering into pneumonia—but it’s not the infallible, final test that some believe it to be. We must communicate with families beforehand that there may never be an answer as to why their loved one died.
As healthcare professionals, we must accept the limitations of the medical autopsy. Furthermore, we can’t expect family members to interpret autopsy results on their own. Collaboration between the pathologist and treating clinician in setting up a time to talk about results can optimize the autopsy discussion in order to answer questions in a way that is meaningful to the family.
Here are my top five tips for talking about medical autopsy with families:
1. Set realistic expectations before the autopsy.
Explain that it’s well suited for the documentation of disease, but may not find the cause of death.
2. Discuss the family’s questions and whether they can be answered by an autopsy.
Keep a record of their questions to inform future conversations.
3. Ask if the family would like to receive the autopsy report. Communicate that it’s written for healthcare professionals.
Language and descriptions used in the report may be unsettling to some people.
4. Arrange a time to talk about results with the family.
If you receive a phone call at a less-than-optimal time, ask to schedule at another time so that you can give the conversation your full attention. Alternatively, if you call the family, ask when the best time is to discuss results.
5. Acknowledge that uncertainty is hard for families when there are no clear answers.
Be supportive and give your full attention to the conversation.