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.

An Emergency Physician, on the Need for Primary Care Doctors

Bill M. is a 22-year old college student who has had asthma and diabetes since he was a child. He comes in with trouble breathing because he has no primary care doctor and is out of his inhalers. While he’s in the E.R., he also says that his diabetes hasn’t been followed for years, and now his blood sugars are out of control and he has new problems with his kidneys and his eyes.

Rani K. is a 46-year old who moved from India to take a research position. She has had dark stools for a month, and now feels intermittently lightheaded. Her blood counts are borderline low. She needs an endoscopy and further testing—tests that can be done as an outpatient, but she gets admitted because she has no primary care doctor and the wait for to see a new one is 103 days.

Annie K. is a 35-year mother of three who has an infection in her leg that will probably get better with antibiotics, but will need to get checked by a practitioner in two days. Her doctor does not have an appointment for a month, so she is told to come back to the E.R. for a wound check. Even with insurance, each ER visit will cost her $250.

I am an emergency physician. These are real stories of patients I see in the E.R. Patients like Bill come in with severe complications of problems that can be prevented or managed—if they had a primary care doctor to follow-up with. Patients like Rani who get admitted to the hospital or like Annie who get told to return because they need urgent follow-up—but have no primary care doctor available to them.

The dearth of primary care physicians is a serious problem facing the U.S. healthcare system. The deficit for doctors is astounding, with a predicted shortage of 100,000 physicians by 2020. This shortage is particularly acute in primary care fields and in underserved areas. The reasons are multifactorial, and have to do with historical policies limiting physician workforce as well as ongoing problems with reimbursement, lifestyle, and service inclination.

We emergency physicians will always treat all-comers to our E.R.s to the best of our abilities. Emergency physicians are a creative bunch, and already, we have created value in areas of greatest need, for example, with pioneering observation medicine units and starting urgent-care follow-up clinics. Still, we as a society need to recognize that to deliver really excellent medical care, we must ensure a robust primary care system, and take steps to strengthen our existing primary care infrastructure through coordinating and task-shifting medical care, reconsidering payment and incentives, and realigning medical education with societal need. Primary care is the backbone of our society, and here in the E.R., we see why it is so urgently needed, every single day.

6 Ways to Get Rid of Your Headache

Got a headache? You’re not alone. Headache is the most common symptom that patients go to their doctor for. Nearly 10% of Americans suffer from regular migraines, and nearly a third of people report having a severe headache within the last three months that interfered with their daily activities.

Here are 6 ways to get rid of your headache.

#1. Rest. Most people feel better after closing their eyes and lying down. This is a common treatment for migraine sufferers, and for people with stress-induced headaches. Most of us will benefit from a rest, so find a dark place and close your eyes.

#2. Relax. Even more common than a migraine is headache induced by tension. However, especially for those who are accustomed to living a stressful life, relaxing is easier said than done. So try various techniques. Head-stretching and breathing exercises may help, as can massages, yoga, and meditation.

#3. Drink. Water, that is. Dehydration contributes to headache, and this is a problem you can fix yourself Drink two glasses of water when you feel like your headache is starting; this can help to curb it before it gets worse.

#4. Exercise. If your head hurts, exercise may be the last thing you want to do. For some people, particularly those who may have tension headaches, exercise can really help their symptoms. Regular exercise can also help prevent headaches from occurring, so try to build in at least 30 minutes of aerobic exercise four times a week.

#5. Take anti-inflammatory medications. Tylenol and Ibuprofen can reduce headache symptoms. Take 650mg of Tylenol and 600mg of Ibuprofen when your symptoms first start. It’s OK to take these together, and to repeat in 6 hours if you need. Be careful that other products can contain these ingredients, in particular Tylenol (acetaminophen): check the label of other medications you’re taking to make sure you are not overdosing on it.

#6. Consider alternative treatments. Though there is no clear evidence that alternative therapies are effective for headaches, some people have great results from acupuncture, for example. Certain teas, such as peppermint and lemon-ginger, have also been associated with alleviating headaches.

Of course, it’s always important to be on the look out for more serious causes of headache, for example, sudden onset of the worst headache of your life, fever, numbness, weakness, vomiting, or other concerning symptoms. Know that everyone is different, and you should try various therapies to see what works for you. Finally, as with everything, prevention is the best medicine, so sleep well, de-stress, and practice other good lifestyle habits!

I welcome your comments! What are other things you’d like to know more about?

10 Things to Bring With You to Every Doctor's Visit

Most patients I see are surprised to find out that there’s something they should have brought to their doctor’s visit. Granted, I’m an emergency physician, and many of my patients come to me in emergency situations that they can’t plan for. However, most people have some heads-up for going to their doctor. Certainly if you’re going to your annual check-up or a routine appointment, you should bring these items with you. Keep this checklist readily accessible; even if you’re going to the hospital for an emergency appointment, aim to take the following 10 items with you:

#1. A medical card. It would be ideal for every doctor to have a full list of your medical history, but our country is not even close to having a nationally accessible medical record system. To make sure your doctor has your information available, carry a card with you. You can find many cards that easily downloadable on the Internet where you list your medical problems, surgeries, doctor’s names, insurance, and allergies. Especially if you are seeing a coverage doctor or visiting the E.R., he or she may not have your medical record. This makes sure that your doctor can see your most critical medical information.

#2. Changes to your medical record. If you have had recent test results since you last saw your doctor, bring these with you. Even if it was your doctor that you’re going to see who sent you to get the test, bringing the results will make sure that they are discussed during the visit.

#3. Your medications. Very often, patients come in and say that they can’t remember what they’re taking. “I think I stopped taking the pink tiny pill, but I’m still taking the white one and the blue one,” is not as helpful as actually seeing the actual bottles with the labels on them. Take all your medications, put them in a bag, and bring them with you. Tell your doctor if you’ve stopped taking any of your medications, and be honest if you haven’t been taking them as much as you were supposed to. Otherwise, your doctor may assume they’re not working, and prescribe you even more!

#4. A list of alternative therapies. The majority of our patients use some type of alternative therapy. It is better for your doctor to know about it. Most doctors are not experts in herbal therapies, but it’s useful for them to know what’s your taking in case there are some interactions with your other medications. Keep a list of fish oil, vitamins, and supplements that you’re using, and a record of any visits to chiropractors, naturopaths, or other practitioners.

#5. A journal of your symptoms. If you have a chronic condition, or if you have a new symptom you’re concerned about, you should be keeping a journal that documents your symptoms and how it is throughout the days and weeks. Your doctor may also ask you to keep track of your response to treatments you’re doing at home. Sometimes, there are objective measures that you need to write down, such as your blood sugar. Bringing the journal with you to your appointment can help remind you of your story, and allows for your doctor better understand what’s going on and how your symptoms affect your daily life.

#6. A list of your questions. You should always come prepared with a list of questions to ask your doctor. Brainstorm the list well before your appointment, and have a concise list of questions, starting with the most urgent that you must get answered. Don’t leave your doctor’s office without asking them.

#7. A notebook and pen. This may seem obvious, but your doctor may not always have writing equipment readily accessible, and it’s important to have a notebook and pen to take notes. Write down things that don’t make sense, and ask for clarification. If there are words mentioned that you’ve never heard of, ask your doctor to spell them. At the end of the visit, ask for a verbal summary. Make sure you write down and understand your plan.

#8. A family member or a friend. Having someone with you will give you support and company during the appointment. As importantly, they can help remind you of your questions and concerns, and is another measure to help ensure your doctor answers all the questions that you have.

#9. A smartphone. Everyone seems to have some kind of smartphone device: an iphone, a blackberry, an ipad. There will downtime when you’re waiting. Use this time to look up what your doctor has told you. The smartphone also keeps you busy if your wait is particularly long!

#10. Some snacks. Often, there are limited food options are the doctor’s office, and you may be waiting for some time. Unless you’re told not to eat, or have a complaint that you’re not sure how it will go, having something on hand can help make you feel better.

I hope this list is useful for you as you prepare for your next doctor’s visit. Please give me feedback: what’s on the list that you find helpful? What’s not on the list that should be? And what would you would like to hear about next?