Consider these cautionary tales:
• The college student who came to the emergency room for an intense hangover, only to be told she would need a spinal tap to rule out possible brain hemorrhage. (True story. Spinal tap as in puncturing the back to draw fluid. For a hangover. She slipped away instead.)
• The drowsy obese woman hospitalized for days for a possible clot when all she really had was sleep apnea.
•The strapping middle-aged man whose chest felt sore after a day of moving heavy furniture, condemned to a battery of tests for possible heart attack.
These are the kinds of alarming cases that populate a provocative new book to be published next week: “When Doctors Don’t Listen: How To Avoid Misdiagnoses And Unnecessary Tests,”
Dr. Leana Wen, a senior resident in emergency medicine at Brigham and Women’s Hospital and Massachusetts General Hospital, co-authored the book with Dr. Joshua Kosowsky, clinical director of the Brigham and Women’s emergency department — a new-minted doctor joining forces with a senior colleague, both seeking to warn patients about prevalent flaws in medical thinking that could cause them harm — and how to counteract them.
Our conversation, lightly edited, is below, and beneath it, an abridged excerpt recounting the tale of the hung-over college student in more detail.
Here’s how I think I’d distill the message of your book: Patients, beware of “cookbook medicine” and of getting stuck on a “diagnostic pathway,” of doctors who get hung up on trying to “rule out” a “worst-case scenario,” and so bombard you with yes-and-no questions that you cannot tell your story, the story that may actually point to your diagnosis.’
But how would you distill it, and translate those phrases I just used?
I like what you said. The way I think about it, too, is that our health care system, and our individual parterships with our doctors, have become so out of control, and patients have the ability to — and have to empower themselves to — take control of their health care. And they should start by understanding what the doctor’s thought process is, understanding the ‘cookbook medicine’ that many doctors practice, and what they can do to focus care on their individual symptoms and story.
How would you explain what you mean by cookbook medicine?
Doctors are under a lot of pressure to be faster and faster and see patients in shorter and shorter periods of time. And so instead of listening for 10 minutes without interruption, they begin to ask yes/no questions —
Yes, I was amazed by the statistic in the book that the patient on average only gets 12 seconds to start telling the doctor what’s wrong before they get interrupted —
Another study recently showed that it’s more like eight seconds. And so that’s how cookbook medicine comes about. Anyone can relate to being asked, ‘Do you have chest pain? Do you have shortness of breath? Do you have headache?’ That’s not individualized care, that’s putting you in a pre-set mold and trying to say that whatever applies for everyone else, also applies to you.
There was a woman in her sixties who was working out at the gym and passed out. When she came into the hospital they were focused on her heart because that’s what their yes-no questions brought up, and they ran all kinds of tests looking at her heart, but for several days she was actually having a raging gallbladder infection.
And so that’s the danger of cookbook medicine: not only does it waste money and result in unnecessary tests, it could result in significant delayed diagnoses and lots of frustration and pain. If they had only listened to her story, even for let’s say 30 seconds, they would have found out that she had some abdominal pain and some nausea preceding the event, which was suggestive of something other than heart.
You have a whole chapter countering the skeptics, but I’m still left wondering: Generally, it’s presented as progress that we have more and more evidence-based medicine and that we can increasingly use algorithms and even automated tools to get us to the right diagnosis. So are you really questioning whether that’s progress?
That’s right. I’m questioning that that’s progress. First, these algorithms and pathways are very helpful for treatment, but i would say dangerous for diagnosis.
For treatment, it’s fine because medicine has gotten so complex, and I, for one, would want my doctor to check the dose of a medication before they give it to me just to be sure. And to make sure that they count the number of sponges before they close my abdomen. So for treatment, checklists, algorithms and such are fine.
For diagnosis, using algorithms is cookbook medicine and is putting me in the same pathway as all the other patients and not personalizing my care. And so I do think that’s dangerous and bad medicine.
The examples clarify it, but I find it a little hard to wrap my head around it at first, that it can actually be detrimental for doctors to follow a standard practice —
I’ve been speaking with patient groups, trying to explain it. My mother had breast cancer when I was a medical student, and she died when i was a resident. In the process of trying to advocate for her health as her caregiver, I realized how much of a disconnect there is between patients and doctors. And so I’ve made it my life’s work to speak to patient groups and get people to advocate better for themselves.
I ask people: ‘How many of you have ever gone to the doctor and felt like you were not listened to? How many of you have come back with more questions than answers? The reason that not listening leads to bad medicine is that 80% of diagnoses can be made based on your history, but if you’ll be interrupted in eight seconds how can this diagnosis actually be made?’
Reading the book, I realized that I’m very much like your character Mrs. McCloskey, not at all a shrinking violet in my usual life, but when I see my doctor I turn totally passive. So I did find it transformative to be told, by another doctor, that no, I really should be speaking up for myself much more. Do you get that feedback often?
My mother had the exact same experience. She was a school teacher in Compton, a really rough area of Los Angeles, and knew what it was like to stand up for herself. But like you, she did not know really what to say to her doctors. She didn’t want to be a ‘trouble patient,’ that was a big part of it. No one wants to be the patient who comes in and throws down a bunch of papers on the desk and says, ‘You’re misdiagnosing me and you’re a terrible doctor!’ but there’s a big gray area between that and what it means to really advocate for your health.
What kind of feedback are you getting from your colleagues?
Actually excellent feedback. I don’t think any doctor or anyone, whether an insurance executive or a hospital administrator, wants to say that they’re against the principles of this book, because it sounds really bad to say, ‘Yeah, doctors should not listen to patients.’” And you can see from the list of endorsements we have that they include a lot of people who are powerhouses in medicine and leaders in health policy, just because this is a concept that they think is overdue.
Actually, we as physicians have been wanting our patients to bring these concepts up to us. And that’s why it’s an idea that’s accepted but in some ways unique, to say patients should be bringing this up — this idea of partnership with your doctor, of helping your doctor help you.
We cannot end without noting that you also hold up WBUR’s beloved Car Talk show as a model…
My co-author and I are huge fans. we were very happy to mention Car Talk — they are so fantastic. Every weekend I tune in and listen to their show. I really believe it helps me be a better doctor.
They are able to understand the essence of a car and the owner and everything surrounding that person by listening to their story. They’re such masters at asking the right questions, inserting the right pauses and within ten minutes they know everything about that person and their car, and they’re providing lots of life advice in addition to car advice. It’s such a good example of how diagnosis and careful listening can work when done well by the doctor.
I think for the majority of patients, they may not have such master doctors and so that’s why we wanted to write this book. It’s for the average patient and the average doctor, because we believe patients can help their doctors help them.
So we can help our doctors be more like Click and Clack?
Readers, here’s a sample cautionary tale, the first one mentioned above, of the college girl with the hangover. It’s excerpted with permission from the book’s Website, which also offers free access to an excerpt on “The 8 Pillars For Better Diagnosis.“
Danielle is a 20-year old college student at the New England Conservatory. She came to the ER because of a headache. When she woke up this morning, her head hurt badly. Her mouth was dry, and when she tried to get up to go to the bathroom, she felt like she was getting faint.
She attributed all of this to drinking too much the night before—normally she has one or two drinks when she’s out with friends; last night, it was her roommate’s birthday, and she did three or four shots and had a few beers on top of that.
“The last time I had a hangover was a couple of years ago, and I think this was how I felt then,” she says. “My roommate Jackie told me to drink lots of water.”
Throughout the day, she felt too nauseous to eat or drink. When the headache didn’t go away in the afternoon, she called her mother. She doesn’t have a doctor in Boston because she doesn’t have any other medical problems and still gets her yearly check-ups over the summer when she’s back home. Her mom convinced her to go to the ER to make sure everything was OK.
Every provider who saw Danielle knew exactly what she had: a hangover headache. She received some IV fluids and was texting away on her phone. However, her doctors were following a “pathway”, a cookbook recipe for what happens when someone comes in with a headache—they needed to “rule out” a bleeding in her brain. Danielle got ordered for a CAT scan of her head. It was negative.
This was good news—or was it? Soon, she was being told that she needed to stay for a lumbar puncture: a spinal tap. The doctors began pulling out needles to put into her back. At some point, she excused herself to go to the bathroom. That was the last time she was seen: as far as we can tell, she escaped out the window of the bathroom. She left all of her clothes and shoes, and ran out in her hospital gown.
All of us can sympathize with Danielle. She was young and scared, and she didn’t want a procedure that she didn’t really need. Instead of a rational discussion with her doctors where she could make sure her story was heard and ask about the risks and benefits of testing, Danielle felt forced into doing something she didn’t want to do. She felt trapped—literally—by the doctors and nurses, by the hospital, and by the medical system.
We do not believe such an approach is conducive to good patient care. We believe in a partnership approach where decisions are made together, not simply based on worst-case thinking or mindless adherence to a depersonalized recipe. Danielle’s story is unfortunately far too common. We hear it every single day, and we write our book to help Danielle and patients her so that they do not have to feel trapped–but are rather empowered–to take control of their healthcare.