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HIPAA does not stop clinicians from listening to families, but many avoid it for fear of breaking the law.

Families can help by writing down what they observe and asking clinicians for a chance to share it.

Clinicians can start with one question for families: What was this person like before the illness?

After driving through the night, my mother arrived at the ICU at three in the morning to find me, her youngest son, intubated and in a medically induced coma after my fourth suicide attempt in nine weeks. On the whiteboard, my medical team had written my name as “Pat.” She erased it and wrote “Patrick,” as I had never been a Pat. “It angered me that they made assumptions about the person lying in that bed,” she later reflected, “about the person who they did not want to know.”

What my mother carried into that ICU room has a name in clinical practice: collateral history. And across 10 years of my untreated bipolar I disorder, only one clinician, an intensivist, asked my family for it, and it was in the context of whether to withdraw life support. No psychiatrist inquired about it to understand the origins and contours of my psychological suffering—a reality of family exclusion that is far too common in our system, where the patient is treated as the sole source of information about himself. Collateral history is vital information from those who intimately know the patient, gathered to complete or correct what the patient reports. Federal guidelines state clearly that HIPAA “in no way prevents health care providers from listening to family members or other caregivers.” Many clinicians, however, shy away from soliciting it out of fear they are violating privacy laws.

The remedy is to be found in a change of practice. As one member of the Nova Scotia Moms, a Canadian advocacy group, put it, a clinician’s mouth may be closed to protect a........

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