When Doctors Don’t Listen: Tell Your Story

I recently interviewed Dr. Leana Wen, a Rhodes Scholar who is an attending physician and Director of Patient-Centered Care Research in the Department of Emergency Medicine at George Washington University in Washington, DC. She is the co-author of “When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests,” a text she wrote with Joshua Kosowsky, MD. The book arose from their frustration at the number of tests modern medicine seems to require, often with no useful results or help in arriving at a diagnosis.


In our talk, Dr. Wen discusses what she thinks patients should know and do to help docotrs arrive at proper diagnoses.


Nadia: Diabetes Health readers sometimes describe their frustration with their physicians. That’s what caught my interest in your book, “When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests.” Can you shed some light on how doctors diagnose and how patients can be better advocates for themselves?


Dr. Wen: A main impetus for writing my book was that so many patients would complain that they would come in with a symptom only to be told that although doctors could rule out certain things, they still had no idea what the problem was. They wondered why their doctors couldn’t give them a diagnosis. Was it because the doctors didn’t really know?


Actually, that’s not the case. Doctors always have some kind of diagnosis in mind, because that’s how medical training works. As soon as a physician sees a patient, he or she forms an idea of what’s happening. It’s based on experience and intuition, and hard medical fact. For example, if a patient is moving well and talking clearly, it’s unlikely he’s experiencing a stroke. That’s a quick first diagnosis.


Then the doctor forms what’s called a differential diagnosis, a list of all the possible symptoms the patient could possibly have. If the patient keeps talking and the doctor does a physical exam or further testing, he narrows down that differential diagnosis until he reaches the most likely explanation of what the patient may have.


Every doctor goes through that process. So when doctors tell patients, “I don’t know what’s going on,” that’s just not true. The doctor knows something about what’s going on. Part of what I advocate for is for patients to ask doctors, “What are you thinking?” and make sure that they get an answer. They should know as much as the doctor knows. A doctor always has a working diagnosis. Always. So the patient should find out what it is.


My other advice is to tell your whole story. Eighty percent of diagnoses can be made based on patients’ stories. If you don’t tell it, the doctor won’t reach the right diagnosis.


Nadia: What if your doctor doesn’t listen?

Dr. Wen: To get your doctor to listen, I have one tip that patients sometimes don’t like to hear but I think is very important: Know how to tell a good story. Doctors are spread all over the place in terms of their attention span, so you have to know what’s relevant and how to condense your story. My book contains many tips on telling a good story, but I’d say the three most important are: go in chronological order; give context; practice. Don’t say, “Well, I’m okay, I’ve just had a headache that’s probably about a 10.” Instead, say, “It’s been so bad I couldn’t go to work for the last three days.” That really gives it context. Then practice telling it. Practice it the same way you practice other important presentations in your life.


Nadia: Say you follow these tips, but the doctor remains inattentive of dismissive?

Dr. Wen: Then you ask again. Another thing: People think they have to tell their symptoms to their doctors. That’s wrong. You want to tell your story to your doctor, the same way you’d tell a story to your child to put them to sleep at night. Tell a story. That’s why the order is so important.


Nadia: Can you illustrate that?

Dr. Wen: One of my best friends suffered quite a few misdiagnoses before he was diagnosed with diabetes. He was an apparently healthy 26-year-old who never went to see a doctor because he didn’t see any reason to. But then he began feeling more tired than usual, and thirsty and having to pee all the time. He also thought he needed glasses because he was having trouble seeing his computer screen. He was exhibiting classic signs of new onset diabetes, but when he went to see his doctor, the doctor said, “You’re healthy, you look fine. There’s nothing going on with you.”


Then my friend said, “Here are all my symptoms. Blurry vision, excessive thirst.” The doctor was like, “Whatever.” He blew it off because my friend looked too well to be having these symptoms. But had he gone in and stated his story in sequence–feeling fine, then tired, then thirsty and having blurred vision–the doctor would have been able to make the diagnosis based on the story.

You can’t just give symptoms, you have to give a story.


Nadia: Telling a story is part of the “eight pillars to better diagnosis” you refer to in the book.

Dr. Wen: Yes. They are:

1. Tell your whole story,

2. Assert yourself in the doctor’s thought process. Partner with your doctor in decision making.

3. Participate in the physical exam and ask what your doctor is looking for.

4. Make the differential diagnosis together. Come up with a list of all the possible things you could have.

5. To partner in the decision making process, let your doctor know that you want to be involved in this, too.

6. Apply tests rationally. Have a reason for every test you’re doing.

7. Use common sense to confirm the working diagnosis.

8. Integrate diagnosis into the healing process.


Nadia: Why do you think doctors are the way they are that patients have to advocate for themselves?

Dr. Wen: I have yet to meet a doctor who says, “I want to misdiagnose my patients or do things badly.” There’s no lack of good intentions. I do think, though, that there are a lot of pressures on doctors–more so than ever–to see a many patients in a short time. They’re over-reliant on technology and patients also seem to believe that technology is the way to go rather than having doctors actually listen to their stories. Patients and doctors both are to blame.


Nadia: What do you mean when you refer to technology?

Dr. Wen: Patients often will come in and say, “I want a CAT scan.” They don’t even want to talk to the doctor and don’t realize that the best test we have is their history. CAT scans, MRIs, and other tests also carry significant risks. But patients seem to have this profound admiration for technology because of marketing, and doctors buy into it as well.


Nadia: Sometimes people don’t trust physicians’ judgments. With technology they feel at least there’s something concrete.

Dr. Wen: Technology will give you the wrong answer. I really believe it will. When I was a second-year medical student, my mother started telling me she was having all kinds of symptoms. She was feeling tired all the time, having difficulty breathing, and at one point coughing up blood and losing weight. She went to her doctor multiple times and he kept saying, “Let me get one more test.” Some were blood tests to look for anemia, and some were tests to look for thyroid problems. She even had a CAT scan to see if she was having gallbladder issues.

He eventually diagnosed her with depression, so she started taking Prozac. But they weren’t the right tests. She actually had metastatic cancer by the time that she was properly diagnosed a year later. All those tests were false reassurances because she was under the belief that everything was OK. She never asked, “What’s the blood work looking for? What did it not look for?”


Nadia: What could your mother have said that might have helped her doctor make a better diagnosis?

Dr. Wen: I wish that we could go back in time and say, “Something isn’t right. Something is wrong with me. All these tests we’ve done are negative but I know there’s something wrong. Let’s start from the beginning and let me tell you my story again.”


Nadia: Patients face the same limitation that the physician faces: time. If a physician is expected to see X patients, is it realistic to expect him to set aside time to hear everybody’s story?

Dr. Wen: It takes no more time to hear a story than it takes to get tests. In fact, it takes less time to get the diagnosis right in the first place and not have to send the patient on to get more tests. But patients have to lead the way, because what we’re seeing now is patients demanding tests and doctors not having the time to explain why tests aren’t necessary or are even harmful.

Patients should also take control and say, “I don’t need this test.” Or conversely, “I don’t need this test, but I need that test.”

Bottom line: Get your doctor to listen to you, because your life depends on it.


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