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Latest Dr. Leana Wen Articles

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When Doctors Don't Listen: Tell Your Story


Jan 14, 2014

Dr. Leana Wen

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.

 


Categories: Diagnoses, Dr. Leana Wen



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Comments

Posted by muchow on 16 January 2014

I would also add that it's good to first pick the right doctor, and then make sure that the doctor you pick doesn't diagnose or treat based on statistical norms rather than patient specifics. I've had doctors who put me on certain drugs other than insulin because 90% of diabetics are taking them. Well, 90% of diabetics--90% of the U.S., even--aren't competitive athletes. If your doctor is used to seeing so-called noncompliant diabetics whose blood sugars are up and down at seemingly random times, it's not the same as a diabetic marathoner who deliberately lets his blood sugar drift up to 170 mg/dl right before a race so he doesn't go low in the first 3 miles. I switched doctors because my old endocrinologist kept trying to get me to adjust my basal rate to avoid a rise in blood sugars after dinner. She didn't even notice that I wasn't bolusing after dinner so I could "run it off."

Posted by rosiolady on 16 January 2014

From my long years of experience, I think this article offers really good ideas on how to approach your doctor. A very good article, and I should think the book is helpful, too.

Posted by Anonymous on 16 January 2014

I think this article has good information, but it doesn't address the arrogant "I know better than you, and no matter what you tell me I won't change my diagnosis" doctor? I was misdiagnosed as having type 2 diabetes when I first developed type 1. Now, even though my body type, activity level and diet were somewhat unusual for type 2, I understood initially that he would say type 2 because I was about 50, and had some family history of type 2. But I could not eat more than 10 grams of carbs without my glucose going high and staying there for a day, I lost 15 lbs that I did not need to lose (this put my BMI low), so I knew there was more going on. The nurse educator said it was probably LADA, and ordered a GAD antibody test which showed a high incidence, but the doc wouldn't listen to either me or her, and refused to refer me to an endocrinologist. Neither would he prescribe insulin -- he just kept saying I must not be complying with the diet recommendation and eating more carbs than I thought. "Just walk or jog after eating to bring your BG down" I finally talked the nurse educator into making the referral so I could get the appropriate diagnosis and get the insulin & test strip prescriptions I needed to protect my health. This same doctor also refused to refer me to PT when I asked to get some proper exercises to deal with sciatica rather than take prescriptions. Needless to say, he is no longer my doctor.

Posted by Anonymous on 6 March 2014

"Get your doctor to listen to you, because your life depends on it."
No kidding!!
That's all well and fine to say, but trust me, I have tried. I am a type one diabetic. Last year I was in the ER for unrelated issues. The doctor flat-out refused to listen to me OR to follow my dr's orders that were in my medical chart. I got NO long-acting or meal insulin for 1 1/2 days. I was in DKA by the time I left. Pt. advocate didn't do a thing, nor did the state medical board. It was beyond horrible.


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