What to Do ‘When Doctors Don’t Listen’

Book by GW attending physician and emergency medicine professor Leana Wen teaches patients how to advocate for their health.
Leana Wen
"When Doctors Don't Listen" by Dr. Leana Wen was released in paperback this month.
July 23, 2014

By Lauren Ingeno

When a 60-year-old woman passes out at the gym, paramedics bring her to the hospital and focus on her heart. What they don’t realize is that severe abdominal pain has prevented her from eating all day. As they run heart tests, the patient becomes increasingly feverish—she is suffering from a raging gallbladder infection.

A college student enters the emergency room complaining of a headache. The young woman had been out drinking the night before and is experiencing symptoms of a common hangover. But, in order to rule out possible brain hemorrhage and meningitis, the doctor orders a spinal tap and CAT scan. Hearing this, the patient flees through a window.

These true cautionary tales explain what happens “When Doctors Don’t Listen,” a book recently released in paperback from St. Martin’s Press, written by Leana Wen, director of patient-centered care research and assistant professor of emergency medicine at the George Washington University School of Medicine and Health Sciences.

“No one should feel so trapped in the medical system that they have to literally jump out a window to escape,” Dr. Wen said. “It’s stories like these that show it is critical for doctors to listen to the patient. And why it’s critical for patients to be their own best advocates when it comes to their health.”

“When Doctors Don’t Listen” arms patients with the tools to do just that.

Dr. Wen sat down with George Washington Today to talk about the problem with checklists and “cookbook medicine,” the importance of correct diagnoses and what patients can do to help doctors.

Q: So, what does happen when doctors don’t listen? What inspired you to write this book?
A: The genesis of this book came from my experience as a caregiver to my mother. When I was a medical student, my mother was misdiagnosed for nearly a year before she was finally told she had metastatic cancer. I learned a lot of lessons from being her caregiver. Doctors are not trying to do something bad on purpose. But the pressures in our health care system are such that there is big disconnect between what patients need and what doctors do. I wrote this book to help patients and caregivers better advocate for themselves.

Q: According to your book, misdiagnoses are often caused by the increasing use of “algorithms” in medical care. Could you explain?
A: An algorithm is a checklist of things to be done. Checklists have a place, but overuse of checklists can also lead to bad medicine. A checklist can be great when you’re having surgery to ensure sponges aren’t left in your body, hands are washed, etc. But if you have chest pain and the doctor starts going through a checklist of symptoms, that’s “cookbook medicine”—following a mindless recipe. You end up getting the same thing as someone else who may not have your diagnosis at all, instead of getting treatment personalized to you.

Q: What is the alternative? How can patients avoid the “yes or no” questions and better advocate for themselves?
A: It is most critical to tell your story. We know that 80 percent of diagnoses can be made on just your story—the history of your illness—alone. You need to help the doctor understand what brought you to see him or her. Patients come to me, and I’ll ask them, “What brings you to see me today?” They’ll look at me blankly. They know I am going to ask that question, so why not prepare in advance? People think that they need to talk about their symptoms, but actually the most important thing you can do is to tell your story—just like you’re talking to a friend or relative.

Q: How can patients prepare to tell their story?
A: Write down key elements. Practice it on your way to the doctor. Pretend you’re talking to a friend or family member (or even rehearse it with them). Use chronology. And make it concise. Remember that your doctor has limited time with you, so make every second count.

Q: In your book, “tell your whole story” is one of the “eight pillars to better diagnosis.” What are two other important pillars?
A: Ask about your diagnosis. A lot of times doctors will say, “You have a headache.” But what does that mean? What is causing the headache? Asking more about what the most likely diagnosis is another good way of understanding what you have.

You should also ask about every test being done. Tests are a means to an end, not an end in themselves. People should be encouraged to ask about whether waiting is an option. In almost all cases, watchful waiting is a very reasonable alternative to doing something now. And so make sure to ask, “What are the risks? What are the alternatives? Can I wait?”

Q: What is the risk of unnecessary tests? Isn’t it better to rule out worst-case scenarios?
A: Every test has risks. One CAT scan increases a young person’s lifetime chance of cancer. Every test has immediate consequences as well. A spinal tap can lead to infections and bleeding. We also need to realize, as a society, that more is not necessarily better. Every single antibiotic has the risk of allergic reaction, nausea, vomiting, diarrhea. Every single intervention we do has side effects.

Q: Would you recommend that patients research on the Internet and try to prepare a “self-diagnosis” before visiting the doctor?
A: No. Don’t get me wrong; I’m all for people being empowered. I think the Internet can be helpful for finding things out if you already have a diagnosis or want to find out more about a medication that has been prescribed. But to make your own diagnosis, the Internet can be harmful. What happens is, you type in your symptoms into Google, and you find out that, for something like abdominal pain, you could have 150 different illnesses. And cancer is always on that list, so people get really scared. Symptoms don’t lead to your diagnosis—the story leads to it.

Q: What advice do you have for those who may be wary about questioning their doctor or speaking up?
A: You should realize that you are the expert when it comes to your body, and the doctor is the expert when it comes to medicine. The two together are necessary to help your doctor help you. Know that you’re not questioning the doctor’s expertise, but rather that you are adding to his or her knowledge about you. And remember to speak up. My mother passed away four years ago, and I think about her—and what I could have done—every single day.