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 patient’s privacy, but their ears should be open to hearing what a patient can’t always see.
Throughout my decade of despair, I was blind to my own illness due to a neurological lack of insight called anosognosia. My family had knowledge that should have been integrated into my care. It was my mother—not any of my psychiatrists—who kept asking the right questions about the roots of my psychic pain. She kept wondering where my anxiety was coming from, a question that might have led someone curious to the brain infection no one was testing for. For psychiatrists, ever since the advent of psychiatry’s bible in the DSM-III in 1980, as anthropologist Tanya Luhrmann has noted, “it did not matter how a patient had become depressed or why.”
My cousin, too, accurately floated the possibility that I had a bipolar disorder—the same illness another cousin had—four years before any clinician ever diagnosed it. She was never brought into the conversation.
When my mother asked to be included in my psychiatric assessment after my stint in the ICU, she was told she could not because of privacy laws. Two weeks later, however, I was discharged into her care. She was deemed sufficient to care for me but incapable of learning the full scope of what she was caring for.
Almost a decade later, when I was a patient at a state psychiatric hospital, the pattern of unasked questions continued. Only once my mother pressed my care team on a number of fronts did they schedule one conference call and dutifully answer all of her questions. But when she asked if she could be involved in my therapy and recovery, even after I signed a release form, the response was “we have no mechanism for that.”
Collateral history supplies a missing perspective. When someone can’t see through the smog of their sickness, the family’s account of who they were before is often the only way to distinguish the person from the illness. A psychiatrist in a 15-minute appointment sees a snapshot, while my mother recorded a disturbing constellation of behaviors in her journal across a quarter of my life.
“Patrick is slipping once again,” she wrote, “didn’t go to work; isn’t responding; is sending hateful messages. I’ve seen the pattern before.” In 2020, she reread her entries from 2017 and “saw the same manic escalation repeating.” She regularly read the acceleration in my syntax before the arrival of the full manic crisis, and she could have shared her impressions of these outbreaks if anyone had asked. She did not know she could offer them.
While my mother’s journal was a form of self-care, it could also have served as critical data that informed my treatment. The philosopher Miranda Fricker calls it testimonial injustice when prejudice leads a listener to give a speaker’s word “a deflated level of credibility.” In mental health care, families know this phenomenon all too well: clinicians commonly assume that a frightened parent is too emotional to be a reliable witness. When filed as worry rather than weighed as evidence, collateral history becomes the absent half of the record.
As critics warn, the charge of lack of insight can be used to dismiss a patient’s wishes. Families can be part of the problem, and they should not overrule patient autonomy if the patient has reasonable objections to an intervention. Families that have been on the receiving end of the manic cruelty I described in this post may be reluctant to share knowledge out of fear of retaliation. In such cases, families can ask that what they reveal be kept confidential, and federal rules allow it to be withheld if the patient later requests his records, sparing them the “fear of disrupting the family’s relationship with the patient.”
To foster a culture of collateral history in mental health care, families and clinicians can both play a role. Families should document as much as they can about a loved one’s case, even when no one is asking yet. They should push for meetings with clinicians to convey essential information about a patient—including a request to keep information private, if necessary. If a clinician won’t listen, they can reach out to a patient representative department. For their part, clinicians can ask family members a simple question: “Tell me about this person. What were they like before the illness?”
That was the culture of curiosity and compassionate care that my mother was trying to model when she erased the word “Pat” from the ICU whiteboard and wrote “Patrick.” As she later described it in her journal, my mother confronted the nurse who was tending to me without a word and reminded her: “He is not just another suicide attempt. He is my son.” Collateral history asks clinicians to make that correction themselves, as a matter of routine, before a mother has to drive through the night to make it for them.
References
Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.
Kelly, P. W. (2026). The patient declined. The Lancet Psychiatry. https://doi.org/10.1016/S2215-0366(26)00269-5
Luhrmann, T. M. (2000). Of two minds: The growing disorder in American psychiatry. Knopf.
Riordan, D. (2026). The patient declined: Caregiving mothers must be partners in mental health care. Nova Scotia Moms for Compassionate & Collaborative Mental Health Care. https://nsmoms.ca/stories/patientdeclined.html
U.S. Department of Health and Human Services, Office for Civil Rights. (n.d.). HIPAA Privacy Rule and sharing information related to mental health. https://www.hhs.gov/sites/default/files/hipaa-privacy-rule-and-sharing-info-related-to-mental-health.pdf