Three months ago, at the age of 40, I had a small bleed in my brain. My story is no more special than any of your stories, but I learned something important from it and I want to share it with you. I learned firsthand the difference between what a patient tells his doctors and what he tells his loved ones, and why it matters.
When I arrived at the emergency room, I knew what data my physicians needed, because I'm a physician. I knew they would write an official note that tells the story of the patient's symptoms and why they sought care. This is called the History of Present Illness or HPI. As I gave the doctors my HPI, it went something like this:
"I was running hard on the treadmill at 5:15 p.m. when I suddenly got a headache. The headache was not relieved by rest and I noticed some neck stiffness. I had been feeling totally well until the headache started; no fever or other reason to suspect meningitis. Within 30 minutes I started vomiting and had sensitivity to light. At no time did I notice any numbness, weakness or other neurological problems."
This is an excellent HPI: short and to the point. But the story I told my loved ones was different.
"I was running hard on the treadmill when I suddenly got a headache. It surprised me at first but I figured I was probably dehydrated. It didn't go away after I rested for a few minutes and drank water. I noticed that my neck was stiff, but I knew it wasn't meningitis because I felt great until the moment the headache started. You know, most doctors are taught that if a patient says "the worst headache of my life," then it's a subarachnoid hemorrhage until proven otherwise. That means a bleed in the brain, usually caused by a ruptured aneurysm. But I knew something like that couldn't happen to me. And anyway, while I suppose technically this could be the worst headache of my life, it really wasn't that bad. I mean, technically everyone has had the worst headache of their life, right?
"I took a shower and didn't feel any better. Then I felt like throwing up. I didn't have to, but had that feeling that letting it out would make me more comfortable. Throwing up didn't help at all. I called my wife: 'Hi babe, I was going to suggest that I pick up the kids from my parent's house since I drove today, but actually, can you ask them to bring the kids home? I think I need you to be home when I get home, I'm feeling sick.' The drive home was a battle to not throw up again, and boy, was the sunlight making my headache worse.
"I could barely say hello to my wife, went straight to lie down, to try to get comfortable. No luck. Where is that pain coming from? OK, I'm not in control anymore, I can't be the doctor. I called my friend who was working in the urgent care. I started to explain but seconds later had to go throw up more. 'Just come in, we'll take care of you and figure out what's going on,' he said before I left the phone. My wife drove, I sat with a bucket between my legs. The retching was making my head hurt so much.
"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.
We start life learning from stories. We learn about our history, our culture from our parents and grandparents. As kids, we make up stories to explain our ideas and experiences. Those of us who have the privilege of going to medical school often find that our best clinical teachers are the ones who tell us stories of patients they have seen. And they teach us to elicit stories from our patients.
Indeed, many are drawn to medicine in the first place by great medical story tellers like Oliver Sacks and Abraham Verghese. They show us that with medicine, we can be data geeks and students of the humanities at the same time.
But at some point, we often lose a piece of our humanity during training, with its long hours, and short sleep. Many doctors, including me, can't forget that night on call, when we actually wished Mr. Jones would hurry up and die, so that we could rest. Survival during medical training is all about efficiency and stories aren't efficient. We learn to boil patients down and reduce them to facts and numbers. Mrs. Garcia, mother of 6 who came to this country to escape further oppression in Guatemala after losing her husband, becomes simply gallstone pancreatitis in room 318.
We see this codified in the jargon doctors use to organize a patient's medical record. The History of Present Illness just doesn't sound like a place to tell stories. And now we're pushing doctors further from the patient's story by asking them to use electronic medical records, which often make taking a medical history feel like filling out an endless series of forms.
We were born with stories and so was the practice of medicine. Technology is transforming our lives including letting us create and share stories in ways limited only by our imaginations. Now let's innovate together to bring stories back into health care, so that we can better understand today's most important questions and more efficiently discover their answers. I look forward to hearing your stories.