Q&A with Leana Wen, M.D.
What prompted you to write this book?
I wrote When Doctors Don’t Listen based on my experiences as an emergency physician who sees my patients getting increasingly frustrated at their lack of control over their healthcare. I also wrote this book because of my experience as a caregiver to my mother, Sandy, who was diagnosed with breast cancer when I was a medical student. So many things went wrong in her care, from her initial misdiagnosis to many unnecessary tests and wrong treatments—I saw, firsthand, how much of a disconnect there is between patients and doctors. I wrote this book to show patients how to bridge that disconnect and really advocate for the care they deserve.
Getting doctors to listen takes time. Today’s doctors are under a lot of pressure, and our health care system doesn’t reward time talking to patients. Is your approach realistic?
Doctors are generally well-intentioned, yet, as you said, are under increasing pressure to spend less and less time with patients, relying instead on well-worn “cookbook” pathways and a multitude of tests that leave patients irradiated, dissatisfied, and feeling totally out of control. That’s why, though, it has to be patients who need to get their doctors to listen. Studies show that more than 80% of diagnoses can be made based on the history alone. So it’s actually dangerous, and wasting time, to NOT listen to your story!
Isn’t healthcare reform going to solve a lot of the problems you mentioned?
No. Don’t get me wrong: we all know that our healthcare system is broken. The cost of healthcare is skyrocketing: we spend $2.7 trillion on health; that’s 18 cents of every dollar. Our care isn’t safe: there are over 100,000 deaths that occur due to medical error every year. The problem is that healthcare reform will take years to happen. If you get sick tomorrow, you can’t wait for healthcare system to be reformed to make sure you and your loved ones are getting the care you deserve. You must take an active role to ensure that your doctor is listening, now. You must advocate to be an equal partner with your doctor in your own healthcare, now.
Why is getting to the diagnosis so important?
First, it’s dangerous to get the diagnosis wrong. People die of misdiagnosis every day; even more suffer from not knowing their diagnosis, and going through months, sometimes years, of uncertainty and frustration. Second, you have to know what you have before you can treat it. Throwing medications at symptoms just masks them, but doesn’t get at the root of the problem. Third, knowing the diagnosis is critical to healing, so you can know what to expect, what are danger signs to watch out for, and what you can do about it.
Most people think of tests as happening before the diagnosis. Why do you advocate for having a diagnosis in mind before patients undergo tests?
Consenting to tests without having a diagnosis in mind is equivalent to playing Russian roulette: it’s aimless and dangerous. Tests should be done only when you have a diagnosis in mind, or else results won’t make sense, and you still won’t know what you have or what to do about it.
In your book, When Doctors Don’t Listen, you talk about the 8 Pillars to Better Diagnosis. If you can just pick one lesson that our listeners should take away, which would it be?
It would be Pillar #1, Tell Your Whole Story. If 80% of diagnoses can be made based on just knowing your story, you’d think your doctor should spend time on this, right? Yet, the average time to interruption is 8 seconds. That’s right: you have 8 seconds to make your case! Now imagine if you were meeting your boss or your senator and you have 8 seconds to say what is it you want from them. You would practice this a lot, right? It should be no different when going to your doctor.
So how can patients become better at telling a story?
First, use chronology. Don’t skip around; make it easier for the listener to follow. Second, put it in context. “My headache was a 7 out of 10” is not nearly as helpful as “my headache was so bad I couldn’t go to work for 3 days.” Third, write down key points. Fourth, practice, practice, practice. Remember, your health outcome depends on whether your doctor understands your story.
Can you summarize the rest of the 8 Pillars for our audience?
#2: Assert yourself in the doctor’s thought process. Your doctor must be thinking something as he is listening to your story. Find out what that is.
#3: Participate in your physical exam. Continuing the partnership, as your doctor is examining you, ask what she is looking for.
#4: Make the differential diagnosis together. A differential diagnosis is the list of all the possible diagnoses that could explain your symptoms; discuss the list with your doctor.
#5: Partner for the decision-making process. Partner with your doctor to devise a plan for narrowing down possible diagnoses.
#6: Apply tests rationally. Don’t just consent to tests; ensure that your doctor explains why each test should be done, and what the risks and benefits.
#7: Use common sense to confirm the working diagnosis. You should reach at least one likely diagnosis at the end of every visit to the doctor. Be sure it makes sense.
#8: Integrate diagnosis into the healing process. Before you leave, ask: what should I expect with this illness? What are warning signs to watch out for? What treatment choices do I have?
With the 8 Pillars to Better Diagnosis, you should come to a diagnosis at the end of every visit, with you as an equal partner along the way. When Doctors Don’t Listen provides several real-life examples of how the 8 Pillars made a real difference in people’s lives.
The 8 Pillars takes time to learn. When you’re really sick, how can you remember all of them?
You’re right that when you’re really sick, you can’t begin to think about how to apply a new vocabulary to approach your doctors. Or if it’s your elderly parent or your child, you feel their pain and anguish—you can’t begin to think about a new way of being the patient. That’s why the key to being empowered and taking control of your care is to practice. You should start using the 8 Pillars to Better Diagnosis in every single medical encounter, even a visit to urgent care for a sore throat or an annual check-up. There are also things you can do every day—in my book, I provide 21 exercises to do at home now to train yourself to think and act like an empowered patient. Taking control of your health is like learning CPR; you have to practice today for when you really need it.
You seem to aim to reduce tests and reduce treatments. Isn’t more care better?
My aim is not fewer tests or fewer treatments: it’s better healthcare. Every single test and every single treatment comes with some risk and some side effect. A CAT scan carries risks of radiation; studies have shown that a 20-year old getting a single CAT scan increases her lifetime risk of getting cancer by 1 in 400—from that one CT alone. I have no desire to ration care or deny tests or treatments to patients who need them—but I do want to prevent complications and risks that never had to be there in the first place.
You also don’t seem to be a fan of checklists.
Actually, I think checklists can be immensely helpful. Checklists to ensure sponges aren’t left in people’s bodies—fantastic. What I have a problem with is checklists for diagnosis. Have you ever had a doctor ask you yes/no questions: do you have chest pain, do you have shortness of breath, do you have a headache, etc? That’s cookbook medicine. If you hear this kind of checklist going on, stop your doctor. Ensure that you get personalized medical care that’s tailored to you.
Some people will wonder, why is it that patients have to do all the work? Isn’t it the doctor’s job to be better for their patients?
In an ideal world, doctors are all excellent communicators who are devoted to really listen to their patients. If you have a doctor like this, count your blessings; most people, unfortunately, don’t have this option. Sometimes, you are stuck with little choice: your doctor is whoever is on call that day in the ER or ICU, or your insurance is such that you don’t have a choice of doctors. What I emphasize is that you have the power to transform your interaction with any doctor you have. No matter what situation you are in, you can take control, apply the 8 Pillars to Better Diagnosis, and ensure that you get the excellent care that you deserve.
Won’t doctors be offended if you try to “take control”?
It’s your doctor’s job is to help you, and you are actually making things easier for them to get to your diagnosis. That said, you may meet a certain amount of resistance because your doctor might not be used to this type of questioning. Remember to always be respectful. A reasonable doctor wouldn’t be offended by this, and it will be the beginning of your conversation with them.
You say, first step to health of nation. What does that mean?
There’s a famous quote from Tip O’Neill that all politics is local. Well, I believe that all medical care is personal. Everything has to start with you, with improving your interaction with your doctor, eliminating unnecessary tests, reducing inefficiencies, and getting the best care possible for you. Our healthcare system is obese with excessive cost and tons of waste. But cutting the waste—and all the complications and misdiagnoses that come with it—has to start with the individual patient and the individual doctor. And you have the power to make a difference, in your own healthcare, and in the health of the nation.
Is there anything else you would like to add?
Our health care system has many problems. The problem that affects every one of us is that patients and doctors are increasingly disconnected. Doctors aren’t listening, and patients are getting misdiagnosed, with terrible consequences. When Doctors Don’t Listen shows you how to make sure your doctor listens to you and gets you to the right diagnosis. Our book offers action tips and exercises for empowering yourself so that you will be ready to take control of your health—and ensure that you and your loved ones get the best care possible.
Dr. Wen would be thrilled to appear on your show to empower your audience to take control of their health! To book her please use the “email me” form. For a list of appearances, please visit this page.