Doctor's 'Worst Ever' Headache, and Learning the Patient Story

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"An IV, nausea meds, pain meds. Ahh, finally I can think, I can unclench. 'I feel a little silly saying this,' I told my doctor friend, 'but I think this is the worst headache of my life.' 'Yeah,' he said, 'we need to scan your head.' Somehow I wasn't worried. I'm... invincible. I've been in a CT scanner before, no big deal. After I went through once, the technician came back into the room and said, 'We're just going to run you through one more time.' Oh sh**. They must have seen blood. All of a sudden I was alone in a CT scanner, in a big cold room. A few minutes later, one of the doctors walked in, looked me in the eye and said: 'You have a subarachnoid.'

"Simultaneously, I had two thoughts: 'Totally makes sense, this is a classic story for a subarachnoid hemorrhage,' and 'How could I possibly have a subarachnoid hemorrhage?!' The symptoms leading up to it made perfect sense, except don't people with a subarachnoid die on the spot or show up nearly comatose to the ER? What's going to happen to my son, my daughter, my wife? I watched images of them as the ceiling rolled by above me on my ride back to the ER.

"My wife says I told her everything was going to be OK and that I looked like I believed it. Not too many minutes later, the neurosurgery team explained that this was indeed likely to be true. They had just reviewed the CT scan, and I was one of the 5-10 percent of people with a subarachnoid hemorrhage who bleed from a small vein, instead of an artery or arterial aneurysm, and typically suffer no long-term problems. Subsequent testing confirmed that I have no aneurysms and my chance of having another bleed is the same as any of yours."

So my family and friends heard my story, not just my History of Present Illness. The HPI is brief, clinical, and effective. It told the doctors what they needed to know, but it was missing two important things.

First, it lacked humanity. Why didn't I tell my doctors that I was scared, that I was worried about the future of my wife and children? Because that's not what you say in a hospital, especially if you're a doctor who knows "what's relevant." But it might have made me feel better to talk about it and it might have reminded my caregivers that I wasn't just another diagnosis, but a husband and father. Carefully listening to patients' stories can teach us what they understand, what they don't understand, their preferences, their fears. This surfaces key un-asked questions and often improves trust and compliance with recommended treatment.

Second, I didn't tell the doctors all of my symptoms and the events surrounding them. Without even thinking about it, I only told them what I thought was relevant. In fact, a common mistake we doctors make is getting too attached to the first diagnosis we think of, and then failing to ask about other symptoms, other clues. Patients and doctors should always spend an extra minute discussing concerns that the doctor may not have asked about. Doing so often leads to a faster and more accurate diagnosis. This is also why, in my own practice, I try to always ask the patient what they think is going on. You don't have to be a doctor to have an insight or clue that can make all the difference.

Since my bleed, I've been thinking about how we can learn more from people's stories -- not just because it seems like the right thing to do -- but in order to improve their care. I was discussing this with Gilles Frydman and ePatient Dave, and they pointed me to Lucien Engelen in the Netherlands, who is doing something about this, now with a little help from me. He just launched www.myhealthstory.me, where anyone (including you!) can contribute a video of their own health story. Medical students will curate them and Lucien's team will lead research on how stories can improve the training and practice of doctors.

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