From NYC and the Leonard Lopate Show

This week, I had the honor of speaking with Leonard Lopate, the award-winning host of National Public Radio's WYNC show.

Among the topics, we spoke about:
* What is cookbook medicine and why aren't checklists always good?
* What happens when doctors don't listen? 
* Why is getting a diagnosis so important?
* How can patients help doctors help them?
* Is malpractice a big problem?
* How will the Accountable Care Act shape the future of medicine?

How to Get Better Health Care From Your Doctor

We received many comments from listeners. Among those posted is one from Ellen from Upper Manhattan:

"I have no problem helping a doctor be as good as she/he can be with me. The anger we feel at doctors comes directly from our fear of helplessness in a vital aspect of our lives.... For me, the antidote is empowering and caring about myself."

What do you think? I'd love to hear your thoughts!

Are Medical Checklists Bad for Your Health?

Using checklists in medical care sounds like common sense. We’ve all heard the stories of the man who had the wrong leg operated on, and the woman who had a sponge left in her belly. Checklists are routine in other professions to standardize management, and we know they can prevent hospital infections and surgical error.

But can there be a downside to checklist medical care? Consider these two examples:

Scenario 1

You come into the ER after you dove to catch a softball. You’re pretty sure you have a bruised rib, but because you said the magic words of “chest pain”, you get whisked away to get blood drawn and then to get an EKG and a chest x-ray. You’re told this is all part of the “chest pain protocol”. But did you really need all of these tests done?

Scenario 2

You tell your doctor you’re tired and feeling run down. Your doctor does “routine blood work”, again following a checklist of things to look through: anemia, thyroid problems, and so forth. Everything is “normal”. The checklist is complete, so your doctor assures you that you’re OK—even though you know you’re not.

In my work as an emergency physician, I know that checklists can be helpful. They ensure complex procedures are done thoroughly and provide an extra assurance for safety. However, before undergoing the procedure or any treatment, you must first have a diagnosis. This diagnosis, and the subsequent treatment, needs to be personalized to you. A “cookbook” approach where you get the same recipe of tests and medications as anyone else will result in expensive, unnecessary care, and even misdiagnoses and harm.

Here are five tips to make sure you get the best, personalized care for you:

#1. Insist on telling your story. Studies have shown that 80% of all diagnoses can be made based just based on the story of your illness. Doctors have limited time to listen to your story, so you must make sure your doctor understands why you’re there. Don’t just say that you have “chest pain”; explain when it started, what you were doing, and how it felt. Write down key elements. Practice until you can tell it in 30 seconds or less. Then tell it to your doctor the moment you see her to make sure the doctor focuses on your individualized story.

#2. Give open-ended responses to close-ended questions. If you suspect that the doctor is going through a checklist of yes/no questions, try to get her to focus on you by adding personal elements to your answers. If you’re asked, “when did you start feeling so tired?”, don’t just say “two weeks ago.” Add that you’re normally very energetic and run 5 miles a day, but for the last two weeks, you can barely get out of bed to work. These answers help provide context to who you are.

#3. Ask about your diagnosis before you consent to tests. If you’re told you need to get blood drawn, ask why. Sometimes, that’s enough to stop the “cookbook” from taking over. Every test should be done for a specific reason, not just because it’s what’s done in this protocol, but because it helps focus the diagnosis. Also ask about what to do if the tests are negative. Just because they’re negative doesn't mean there isn’t anything wrong, so what should be next steps?

#4. Inquire about treatment options. In very few situations is there only one test that could work or one protocol that must be followed. If your doctor says you need to do this one set of tests, ask what your other options are. Often, watchful waiting is a perfectly acceptable alternative. Discussing options helps to remind your doctor to tailor the treatment to you.

#5. Let your doctor know that you want to be a partner in your decision-making. If you still think that your doctor is following a recipe rather than individualizing care, ask her to explain her thought process to you. Say that you respect her expertise, and you want to learn what it is that she is thinking. Your doctor may be so busy or so used to checklists that your request can help her to refocus on you and your individual needs.

This article was previously published in Women's Health Magazine (posted here with their permission).

ER Doctor = Detective

Being an emergency physician is an honor and a privilege.

Along with primary care physicians, we ER docs are the frontlines of medical care. We have to be able to take of every patient, no matter their age or ailment (or, thankfully, their ability to pay).

Our job is often very challenging because we have to make decisions with little information. It's often easier to second-guess decisions we made, because the answer is always clearer in retrospect.

My latest NPR article discusses the challenge of being an ER doc and practicing medicine in a fragmented medical system.

When Facts Are Scarce, ER Doctor Turns Detective to Decide on Care

Please read, and comment! I'd love to hear your thoughts.

Guest Post: Let's Protect Ourselves From The Harms of Overdiagnosis

by Sonia Gow

About 20 years ago I was ill with a mystery ailment. The symptoms were flu-like and I felt totally drained of energy. My doctor said he couldn't help me because he didn't know what I had, how I got it, how long I would have it, or how I could feel better. Basically, I was on my own.

This was the beginning of my journey to figure out how I could regain and maintain my good health. I read everything I could about it, altered my diet and exercised. Then, because I enjoyed the exercise and I felt so much better, I became a fitness professional so I could help others enjoy exercise and feel better, too.

I was supposed to work with healthy people but because my focus is working with people over 50 years of age, I never met any. Most "boomers" are taking at least one prescribed medication, and frequently many more, usually related to hypertension or cholesterol. For the past few years I've been working primarily with people living with Parkinson's disease and they are prescribed numerous medications, as are many of their partners or caregivers.

Because of all the medical care my friends receive, there are lots of stories about their visits to the doctors and about their treatments, but what really hits home with me is how this all affects their lives. How their activities are limited or the time it takes for medical appointments. There are family activities and other fun things they miss out on. I recently heard this referred to as "missed opportunities". 

While the physical, emotional, and financial aspects are easily acknowledged as having value, these lost opportunities frequently are not. But they do have value. They are about our lives.

Recently I discovered several books written by doctors and journalists about overdiagnosis and overtreatment, and they confirmed what I already suspected - that people were not only being tested and treated unnecessarily but that some were being harmed, too. They thought they were doing the right thing by following their doctors' orders but were unaware of the harms or that there might be other options, and they were unnecessarily enduring additional hardship. 

What is wonderful about Dr. Wen's book, When Doctor's Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests, is that she not only explains the problems but offers user-friendly suggestions on how to speak up and work with your doctor to ensure that you receive the treatment you need for the ailments you have and avoid medical treatment for the ones you don’t have

I am so pleased to see that more awareness is being directed to overdiagnosis and overtreatment.  I started writing a blog, Patients Are People Too, to direct other patients to the information that's out there so they can make better decisions. .

I never did get a definitive answer about my mystery ailment from any of the doctors I've seen over the years, so I guess the first one did me a favor. Because of him, I've been able to figure out what works best for me. I hope you'll be encouraged to do the same.

Sonia Gow is a patient—and person—and blogs at patientsarepeople.com.

Goldilocks Medical Care: Not Too Little, Not Too Much….

In my last two blog posts, I discussed the harms of a new epidemic: too much medical care. We also don’t want the opposite, of enough care care. In fact, much of the driving force leading to overdiagnosis and overtreatment is this fear of rationing.

So what can you do to ensure that you obtain just the right amount of care?

It isn’t easy—if it were, if there an algorithm that would give us the answer, then we wouldn’t have the Goldilocks problem (“Is it too little? Too much?”).

Here are 5 suggestions that may help:

First and foremost, work in partnership with your doctor. The most critical key to getting good medial care is a trusting relationship between you and your doctor. This is not to say never question your doctor; but rather, develop a relationship of mutual respect such that you are the expert when it comes to your body, and the doctor is the expert when it comes to medicine.

Second, make sure your doctor listens. Study after study shows that the patient history will reveal the diagnosis in 80% of the cases, without the need for any tests or further interventions. If your doctor orders tests instead of listening to your story, that leads to unnecessary testing—and potential misdiagnoses. Prevent this by telling a good story, and making sure it’s heard.

Third, ask about your diagnosis. Understanding what you have is key to figuring out what should follow. Before you get any tests done, ask your doctor what he thinks you might have. This gives you some idea of what tests may be necessary, and also focuses your doctor to remember the important tests and have a justification for tests ordered.

Fourth, ask about every test done. Every single test has risks, so make sure you understand why each test is done. Ask about the risks. Ask about how it would change management: what happens if it’s negative? What happens if it’s positive? And, importantly—what happens if nothing is done at all? This helps you gauge how emergent (and also how necessary) a particular test is at this point in time.

Fifth, do your own research. This is particularly true when it comes to treatments. Look on the Internet and ask your friends and family. Be aware that not all information is equally credible, but at least this helps you formulate questions to ask your doctor. It might also help to look up your doctor and see if she has conflicts of interest that you may not be aware of: information about drug company affiliations, for example, can be found online. Write down questions, and ask them.

None of these suggestions are foolproof. These five steps can help begin the process for you and your doctor to work together to identify the right tests and treatments for you. If you have other thoughts or ideas that work, please write your comments below.

“Winding Back the Harms of Too Much Care”

I just returned from a thought-provoking conference at Dartmouth. Entitled Preventing Overdiagnosis: Winding Back the Harms of Too Much Care, and co-sponsored by Dartmouth University, British Medical Journal, Consumer Reports, and Australia’s Bond University, the conference raised many points that are rarely discussed.

Here are some of my favorite quotes:

“Risk factors have been turned into diseases.” Dr. Steve Woloshin discussed the absurdity of labeling us all with a “pre-disease”: doesn’t everyone all have some version of pre-hypertension, pre-diabetes, or even pre-death? More insidious is the promulgation of testing people who have no symptoms, despite of evidence of harm. American Cancer Society’s Chief Medical Officer Dr. Otis Brawley discussed how hospitals offer “free” screening tests knowing that they will lead to false positives, thus creating a market for more testing and more care.

“Diseases are being created for the purpose of selling medications.” Dr. Lisa Schwartz told the story of how GlaxoSmithKline created a new disease entity—restless leg syndrome—to find a new use of a Parkinson’s disease medication that was about to go off patent. Roy Moynihan showed his class spoof video of a new and dangerous epidemic.

“Ordinary experience is medicalized.” Dr. Allen Frances, a psychiatrist and Chair of the DSM4 task force, rails against the psychiatric profession for labeling people with diseases they don’t have. If you are grieving two weeks after the death of a spouse, you have depressive disorder; if your child is inquisitive and energetic, he has attention deficit disorder. Of course, watchful waiting is never the solution, but fortunately, there is a new and expensive medication for this disease.

“Language corrupts thought.” A diagnosis of “carcinoma-in-situ” brings up scary connotations and fuels the desire for aggressive treatment. However, our technologies have gotten so advanced that we are detecting many early cancers that, if left alone, may never grow or harm the patient. The National Cancer Institute recently proposed a change in terminology for cancer, and other conference speakers proposed other disease definitions that should be changed.

“We are practicing faith-based medicine that ignores the harms and exaggerates the benefits.” It is well-documented that medical journals bias in favor of positive results, and that there are many financial interests to promote the newest, latest medication or treatment. Stories abound about people who survived because of early detection of disease and new, experimental treatment. However, there are also many stories of people who experience serious side effects and fatalities from overdiagnosis and overtreatment. These counternarratives need to be told, and evidence for harm needs to be published.

“Overdiagnosis is a symptom of the same problem that drives underdiagnosis and misdiagnosis.” In the discussion of overdiagnosis, it’s important not to forget that there are other pressing issues too, including medical error and lack of access to healthcare. The medical industrial complex is at fault here, too, and doctors need to assume our social responsibility and moral imperative to do what’s best for our patients.

“More care isn’t better care; it’s just more care.” In the words of my hero, cardiologist and Nobel Peace Prize winner Dr. Bernard Lown: “Overtreatment harms patients, thereby negating the first principle of doctoring, primum non nocere.” Our goal in medicine should be to do “as much as possible for the patient, as little as possible to the patient.”

There will be many challenges ahead for conference attendees, including the difficulty of framing and discussing the problems of overdiagnosis and overtreatment. Much of this conversation will continue at the Lown Institute's Right Care Alliance conference in December. My next few blog articles will address these difficulties. Stay tuned, and please feel free to contribute your thoughts below!

Four Years Later: Reflections From the Last Day of Residency

On July 1^st, four years ago, I walked through Mass General and Brigham & Women’s Hospitals with an odd mixture of fear, relief, and excitement. Now, as I leave the hospital after my last shift of emergency medicine residency training, I am filled with a similar hodgepodge of emotions and reflections.

#1. “You were terrified of being a doctor!” I mentioned this article to the attending who oversaw my first shift as a newly-minted doctor. That day is forever etched in my mind; did he remember it? Much to my great embarrassment, he chuckled and said, of course. “I kept telling you not to worry if you don’t know something, but you were scared of everything!”

Though I knew that I was there to learn, it took me a while to get over my insecurities about not knowing so that I could focus on learning. And the learning was everywhere—on every single shift, I learned from great clinicians not just about diagnosis and treatment, but also important lessons on how to lead a team, how to teach, and, most importantly, how to help people who come to us in their time of need. I’ve been incredibly fortunate to have learned from many colleagues along the way, including the amazingly skillful and compassionate nurses at Brigham & Mass General. As my mentors say, it is called the practice of medicine for a reason, and we should embrace, rather than fear, the learning.

#2. “Mistakes will happen.” Every doctor has made a mistake some time in her life. Whether it’s a technical error (i.e. inserting a long IV into an artery rather than a vein), a systems error (i.e. ordering a medication for the wrong patient), or a communication error (i.e. angering a patient or colleague), all of us graduating residents will have made some kind of error. I myself made all three of these errors, and more.

With the volume of patients we will see throughout our careers, being the cause of medical error and interpersonal conflict is a terrifying and humbling thought. A wise physician said to me that just as residency is the time to learn how to practice medicine right, it’s also the time to learn skills like how to disclose mistakes to patients, and how to deal with conflict. “Don’t shy away from difficult situations,” he told me. “Put yourself in the middle of them to see what others do, and then develop your own style.”

#3. “That man has a name, and it’s not ‘the chest pain in room 8.’” As busy residents with long to-do lists, we often fall prey to the tendency to dehumanize our patients and brand them as chief complaints to quickly decide their disposition. On the surface, this might appear to save time, but dig a little deeper, and such algorithmic, depersonalized medicine results in unnecessary tests, misdiagnosis, and worse patient experience.

Furthermore, practicing cookbook medicine is not why we chose to become doctors. My work became much more meaningful when I made a commitment to connect with each patient, no matter how busy I am. I learned that the “old guy with dementia” was a world-renowned philosopher, that the “the onc patient with fever and neutropenia” had ten children with her preschool sweetheart. As physicians, we are privileged to hear so many stories from so many people. Cherish this gift we’re given to share in our patients’ rich lives. Our healthcare system isolates patients and disenfranchises families; we have the power to practice real patient- and family-centered medicine.

#4. “Residency is hard, and you have to take care of yourself.” My best friend from medical school, who had just completed his pediatric residency, warned me about this before I started intern year. How right he was. Work hours may have improved since our forefathers trained, but residents still work a lot and are exposed to high-stress situations with life-and-death consequences. Studies have shown that rates of depression and burnout increase sharply during training, yet the “hidden curriculum” of medical training still favors bravado over openness. Residents are taught to “suck it up” instead of talking about difficult situations and taking care of ourselves.

This is not the way it has to be! I learned this lesson the hard way during second year of residency, when my mother died. I suppressed my emotions rather than seek help, and saw how easy it is to feel isolated. Fight this impulse and stay connected. Find peers you can reflect with and openly speak about your experiences. Nourish the other people in your life and recognize their critical role in helping you through this process. For me, it was my wonderfully supportive husband and my friends who sustained me and kept me grounded. Make time for these people in your life. I cannot think of anyone who regrets the time spent with our loved ones and laments, “if only I spent that day reading one more research article!”

#5. “Emergency medicine is a phenomenal field.” The first grand rounds lecture I heard as an intern was by Dr. Larry Weiss, then President of AAEM. He spoke about how emergency medicine is an ideal specialty for advocacy: as the frontlines of medical care who interact with every aspect of the healthcare system, we are the most well-positioned physicians to advocate for our patients, our communities, and our society. We see the problems with public health—smoking, obesity, gun violence, etc. We see the problems with under-, over-, and misutilization of healthcare. And we have the ability and power to act on these problems every day.

In my fourth year of medical school, I selected emergency medicine as a specialty because I wanted the ability to treat any patient, anywhere. Being one of the emergency providers who took of care victims of the Boston bombings made me grateful for my training and for the skills I’ve learned along the way. We in emergency medicine have the incredible opportunity to utilize our training to do what we love while making a difference to improve care for our patients and to transform our healthcare system.

What else can I say about these last four years? It’s been a rollercoaster ride. Now that I’m about to embark on the next journey as an emergency medicine attending physician, health policy professor, and Director of Patient-Centered Care Research at the George Washington University in D.C., I am filled with exactly the same emotions of fear, relief, and excitement that I came to Boston with. I have learned so much from so many incredible people along the way, and will forever be indebted to the amazing attendings, residents, nurses, physician assistants, and other colleagues at Brigham & Mass General Hospitals.

Now, what will the next years bring? I’ll be on leave for the next month, but stay tuned for more dispatches and reflections, soon to be from the nation’s capitol.

Why Diagnosis is the Key to Your Health—And the Health of the Nation

May is a recent divorcee in her early sixties. She was working out at the gym when she began to feel queasy and lightheaded. She awoke in the back of an ambulance, and soon, she was in an E.R. getting blood drawn. “We need to make sure you don’t have a heart attack,” she was told.

As the day went on, May underwent test after test to “rule out” a heart attack, then a blood clot in her lungs, then a stroke. She was relieved when she found out that she didn’t have these grim problems, but she still had no idea why she felt terrible. By the next morning, she had developed a fever and was shaking with chills. It took until the end of the following day for doctors to figure out that the problem was a raging gallbladder infection. She had to undergo emergency surgery, where they found that her gallbladder had ruptured and was leaking infected fluid throughout her abdomen.

When you go to the doctor, you want to find out what’s wrong and how you can get better. In modern day America, though, what you will get are tests to “rule out” problems rather than figure out what you actually have. Patients go through x-rays and CT scans, get vials of blood drawn, and stay in hospital for days on end, then leave with a huge bill but little idea of why they feel sick or how they can get better. Not only does it leave them confused and feeling just as unwell, it often results in misdiagnosis because, as in May’s case, the focus was never on figuring out the problem to begin with.

Like the rest of America, our healthcare system has become morbidly obese. Costs are skyrocketing; we spend 18 cents of every dollar on health, a number that will rise to over a quarter by 2020. Millions of people are priced out of healthcare, with one in eight uninsured and far more underinsured. But our system is not just failing those who lack access to care. Those who have access are getting exposed to unnecessary tests with unnecessary side effects. People are going to their doctor and leaving without feeling any better.

In fact, they are getting misdiagnosed, and are suffering the consequences. Over 100,000 deaths due to medical error occur every year, and the majority of these errors are errors in diagnoses. There are growing movements to make medical care safer. I applaud these efforts to ensure surgical safety and reduce bloodstream infections, but the push for safety has to begin even earlier in the process, with getting to the right diagnosis.

Why is the diagnosis so important? First, it’s important for you to know what you have before you can treat it. You have to know what disease or process you have so you know what to expect, what to watch out for, and what you can do about it. Throwing medications at symptoms just masks them, but doesn’t get at the root of the problem. Second, not knowing what diagnoses are being considered is equivalent to searching for a needle in the haystack: it’s aimless and dangerous. Tests should be done to narrow down diagnoses, or else results are going to be obtained that don’t make sense, and you still won’t know what you have or what to do about it.

It took May a near-death experience and over a year of recovery to find out that the key to better to better healthcare hinges on getting the right diagnosis. In her case, all of the symptoms of a gallbladder infection had been there from the start. The problem was that the doctor was fixated on making sure she didn’t have other things—other problems that she didn’t even have symptoms for—and missed the boat altogether.

When you are next at your doctor, make sure you ask for your diagnosis. If the doctor is not sure, or wants to run some tests first before telling you, ask her for a list of possible diagnoses and the most likely diagnosis BEFORE you consent to the tests. Your doctor must have some thoughts on what you might have, and you should find out what that is (if she doesn’t have any clue, then that’s a problem too!).

Getting to the diagnosis is the first and most critical step to getting better, and you need to help your doctor help you. Only by ensuring that we get the best and most efficient care possible for ourselves and our loved ones can we achieve meaningful healthcare reform for the nation.

How to Begin the Partnership for Shared Diagnosis and Shared Decision-Making

In my last post, you met Catherine, a young woman who came down with a stomach bug but was ushered through numerous blood tests and a CT scan, only to be even more confused than ever. You saw how shared decision-making needs to begin with the process of establishing a partnership for shared diagnosis, because diagnosis is the first and most critical step to your medical care.

Here are 5 steps to partner for your diagnosis:

#1. Find a physician who agrees with shared decision-making for diagnosis. Your doctor should listen to you, care about you, and feel comfortable—even seek out—involving you as a partner in the decision-making process. You will quickly see whether your doctor gives lip service to the partnership or really believes in it. Someone who really believes in it will work with you and welcome and actively solicit your suggestions. Someone who isn’t will quickly exhibit signs of impatience and defensiveness. If you are always respectful while asking questions, your doctor should welcome the input rather than feel challenged by it.

#2. Express your intentions to your doctor. Doctors aren’t mind readers, and are probably conditioned to patients being passive participants in their healthcare. No matter if this is a new doctor, or one that you’ve had a relationship with for a while, state clearly at the beginning of your visit that you want to be involved as a partner in your own decision-making process. Ask to share in your doctor’s thought process about your diagnosis. Inquire about what it is he/thinks you have. Say that you want to be involved in figuring out what you have and what to do. If your doctor does not respond positively, perhaps it is time to look for another care provider.

#3. Help your doctor help you. Most diagnoses can be made by the story—the history of your illness—alone. Yet, one of the most frequent complaints patients have is that their doctors don’t listen to them. No doubt, there are limitations and pressures on the doctor’s time, but neglecting to listen to you will result in misdiagnoses. You can help make sure your doctor listens to you by telling agood story. Rehearse it in advance and make sure you tell a concise version. Begin at the beginning and proceed chronologically. Provide context, such as how it affected your life. Use your own voice instead of what you think is medical jargon. Write down key details so you don’t forget, and practice the delivery. Knowing how to convey your story effectively is a key part to helping your doctor help you get to the right diagnosis.

#4. Make sure you understand every test that is ordered. Every test should be done for a specific reason. Study after study shows that there is no role for the “screening” test: doing “basic labs” or a “screening CT” is like fingerprinting the entire city to search for a suspect, because it’s ineffective and likely to end up with confusing results. Not to mention that every test, even the basic blood draw, has potential harms (a CT has many more potential harms, including increasing your lifetime risk of cancer). If your doctor asks for lab work to be done, ask what blood work is requested and why. If your doctor asks for a CT scan, x-ray, MRI, etc, ask what it is looking for. How is the test going to change your management? Is it necessary? What are the possible harms? What are the alternatives? These are the same questions you would ask if you were deciding whether to treat and how to treat your illness, and making the diagnosis should be no different.

#5. Make decisions together, always with the diagnosis in mind. A test or procedure should be done only if it helps make your diagnosis; otherwise, what’s the purpose? The treatment should be targeted to the diagnosis; otherwise, what is it being done for? Perhaps there are two or three possible diagnoses; what is going to be done to try to narrow this down? What’s the natural course of the illness; what should you expect and what can you do to start feeling better? You need to be proactive in thinking through and asking questions, and if you have a willing physician (as you should), you should have all of your questions answered. Keep asking if your diagnosis does not make sense to you.

A critical component of shared decision-making is to work with your doctor to figure out your diagnosis. Focusing on this first, key part of your care will have transformative effects on your health.

Imagine, how different would it have been if Catherine were involved in the very beginning with her diagnosis. She would have been able to tell her story and ensure her doctors listened, which could have led to the diagnosis without any tests at all. She would have avoided an unnecessary CT scan and unnecessary blood work, along with the all the potential harms and confusion of the tests. She would have received her diagnosis and understood what it is and how to treat it. She would have gone home, reassured and feeling better.

You may be dissatisfied and frustrated by the way your medical care is today, but there is a way to make it better. You hold the key to transforming your health. Try it on your next doctor’s visit, and focus on shared decision-making towards making your diagnosis.

Tried it? Have suggestions? I welcome your comments!

The Forgotten First Step to Shared Decision-Making: Partnering for Your Diagnosis

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Catherine Smith is a 39-year old woman who is confused, scared, and feeling terrible. She is generally pretty healthy and active, but this morning, she woke up feeling queasy. Throughout the day, she began throwing up and having diarrhea. She wasn’t keeping anything down, so her husband convinced her to go to the local ER to get checked out.

In the ER, she had an IV placed and blood drawn. A nurse and then a doctor asked her some questions. She was told she had to drink some thick white liquid. A couple of hours later, she felt better. She could go home, right?

No, she was told; she was getting a CT scan. Nobody told her this earlier, but OK, she reasoned, she has to trust the doctor; isn’t that why she came here?

So she dutifully got into a donut-shaped machine. A couple of hours later, she was told that the test was “negative”: she didn’t have appendicitis or gallstones. Of course not—she had her appendix and gallbladder removed years ago!

“Good news,” the doctors said to her. “We have “ruled out’ the worrisome things. You can go home!”

But Catherine didn’t understand. Why did she get so sick in the first place? What was the point of the tests? She was feeling nauseous again—was this going to keep happening? Is she going to be OK?

**

I’m an emergency physician, and Catherine was my patient. Actually, I see patients like Catherine every day, patients who are confused about what’s going on and dissatisfied with their medical care. We in the U.S. believe that we have the best medical care system in the world, yet our healthcare consumers are more unhappy than ever. Patients don’t feel like their doctors listen to them or take their concerns seriously. They are subject to endless tests, but, at the end of the day, still have no idea what they have or how to get better. They keep being told that they need to be "empowered patients", but are not involved as an equal partner in their care.

The shared decision-making movement is gaining much-needed momentum and traction. I applaud it whole-heartedly. Yet, the movement so far has focused on shared-decision for treatment. Don’t get me wrong; it’s very important for patients to share in the decisions about weighing chemotherapy agents versus surgery for cancer, deciding between lifestyle changes and starting medications for high cholesterol, and so forth. What I argue is that patients have to be involved in an even earlier and more fundamental part of the decision-making process: the diagnosis.

Why is the diagnosis so important? First, it’s important for you to know what you have before you can treat it. You have to know what disease or process you have so you know what to expect, what to watch out for, and what you can do about it. Throwing medications at symptoms just masks them, but doesn’t get at the root of the problem. Second, not knowing what diagnoses are being considered is equivalent to searching for a needle in the haystack: it’s aimless and dangerous. Tests should be done to narrow down diagnoses, or else results are going to be obtained that don’t make sense, and you still won’t know what you have—like Catherine.

Wait a minute, you might be saying. Isn’t it the doctor’s job to figure out the diagnosis? How can patients possibly help in this process, if you are not the ones with the medical training? My patients are surprised when I tell them that, actually, they are key to their diagnosis. At first, they don’t believe me. With time, they understand what I mean that only you can convey to your doctor the symptoms you’re having and the story of your illness. Only you can help your doctors narrow down the possibilities and arrive at the answer. Only you can be sure that your doctor listens to you and focuses on getting you to your diagnosis. Only you can really advocate for your healthcare.

I go as far as to tell my patients to never leave their doctor’s office without getting a diagnosis. It doesn’t have to be the final, 100% definitive diagnosis; after all, it’s very rare to be 100% sure of the exact cause of each and every illness. Catherine probably had a stomach bug—a simple viral illness. Am I 100% sure it can’t be something else, like food poisoning? No, but nor do I have to be 100% sure, because the management and the expected course of her illness will not change. And with every symptom, there are the “scary” things to watch out for, in this case, things like ectopic pregnancy or ovarian problems.

It’s important to consider these scary causes, but “ruling out” problems should not be the only goal. In fact, the goal should be to arrive at a most likely diagnosis. This is what will aid you in guiding your decision-making and your thinking about what tests, if any, are needed. This is what will inform your understanding, your questions, your treatment, and your follow-up.

It is critical that you work with your doctor to make sure you are an equal partner in the process of getting to your diagnosis. My next post will address what, exactly, you should do to engage in this key first step to shared decision-making. In the meantime, I welcome your comments, and also invite you to visit the website for my forthcoming book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests.

How a Stubborn "Western" Physician Came to Appreciate Eastern Medicine

As a child growing up in China, I was always aware of Traditional Chinese Medicine (TCM). TCM is what we refer to as Eastern medicine, in contrast to the Western medicine we know from U.S. hospitals. I never understood much about TCM, only that it somehow involves herbs and that many Chinese people believe in it. The more I progressed in my medical training in major U.S. academic centers, the more distanced I felt from TCM. Why should I learn about something that lacks evidence, when there’s so much to know about for which there is good research?

For the last month, I have been in China studying its medical education system. While my study is primarily on its Western medical system, I have been so fascinated by what I learned of Eastern medicine that I spent many free evenings observing TCM practitioners. There is so much I didn’t know. For example, I had no idea that many TCM doctors in China undergo rigorous medical training, and actually take the same courses as Western medicine doctors in addition to courses in herbs, acupuncture, cupping, etc. As a discipline, TCM is far too complex for me to understand in my short observation, but there are some very important “lessons from the East” that are applicable to our Western medical practice:

#1. Listen—really listen. The first TCM practitioner I shadowed explained to me that to practice TCM is to “listen with your whole body”. Pay attention and use every sense you have, he said. I watched this doctor as he diagnosed a woman with new-onset cervical cancer and severe anemia the moment she walked into his exam room, and within two minutes, without blood tests or CTs, sent her to be admitted to a (Western) medical service. I’ve seen great emergency physicians make quick diagnoses and disposition decisions, but this was something else! “How could you know all of this?” I asked. “I smelled the cervical cancer,” he said. “I looked and saw the anemia. I heard her speak and I knew she could not care for herself at home.” (I followed her records in the hospital; he was right on all accounts.)

#2. Focus on the diagnosis. I watched another TCM doctor patiently explain to a young woman with long-standing abdominal pain why painkillers were not the answer. “Why should we treat you for something if we don’t know what it is?” he said. “Let’s find out the diagnosis first.” What an important lesson for us—to always begin the diagnosis.

#3. Treat the whole person. “A big difference between our two practices,” said one TCM doctor, “Is that Western medicine treats people as organs. Eastern medicine treats people as a whole.” Indeed, I watched her inquire about family, diet, and life stressors. She counseled on issues of family planning, food safety, and managing debt. She even helped patients who needed advice on caring for the their elderly parents and choosing schools for their child. This is truly “whole person” care!

#4. Health is not just about disease, but also about wellness. There is a term in Chinese that does not have its exact equivalent in English. The closest translation is probably “tune-up to remain in balance”, but it doesn’t do the term justice, because it refers to maintaining and promoting wellness. Many choose to see a TCM doctor not because they are ill, but because they want to be well. They believe TCM helps them keep in balance. It’s an important lesson for doctors and patients alike to address wellness and prevention.

#5. Medicine is a life-long practice. Western medicine revers the newest as the best; in contrast, patients revere old TCM doctors for their knowledge and experience. Practicing doctors do not rest on their laurels. “This is a practice that has taken thousands of years to develop,” I was told. “That’s why you must keep learning throughout your life, and even then you will only learn just a small fraction.”

#6. Evidence is in the eyes of the beholder. Evidence-based medicine was my mantra in medical training, so I was highly skeptical of combinations of herbs that are supposed to have some curative effects. But then I met so many patients who said that they were able to get relief from Eastern remedies while Western treatments failed them. Could there be a placebo effect? Sure. Is research important? Of course. But research is done on populations, and our treatment is of individuals. It has taken me a while to accept that I may not always be able to explain why—but if it helps the patient, that’s what’s important. “In a way, there is more evidence for our type of medicine than for yours,” a TCM teacher told me. “We have thousands of years of experience—that must count for something!”

There is so much I have not covered about TCM. Its practices vary regionally, and no doubt, there are more and less capable practitioners (as there are in Western medicine). More research into TCM methods will be important. However, regardless of whether we Western doctors want to prescribe TCM treatments, we should recognize there is much to learn from Eastern medicine, including what it means to be a physician to really care for our patients. A month into my China trip, I, for one, have a newfound appreciating for Eastern philosophy and medical practice.