Sitting in your doctor’s office? Do this to help get the right diagnosis
By Helene M. Epstein
Diagnosis is a journey. Over the next few months, this column will take you through the various steps of that journey to help you get an accurate diagnosis. Last month we focused on preparation: Dx IQ #5 — Top five things to do before you see your doctor. This month we’ll talk about how to navigate the doctor’s visit when you have a health concern. Each month we’ll show you where the pitfalls may be, how to be proactive, and how to partner with the care team to reduce them. [If you want an overall look at how misdiagnosis happens, click here.]
Time is not just measured by seconds or minutes in a medical practice. It seems to drag on while we’re in the waiting room and zip past us when we’re finally face-to-face with the doctor. But you can make that time work for you, if you’re prepared. (Visit Dx IQ #5 — Top five things to do before you see your doctor to learn about preparing for your visit.) While the medical staff is focused on caring for another patient, here are some things you can do as the most important member of Diagnosis Team YOU.
In the waiting room
After you check in at the desk, you’ll be handed a clipboard with two to six pages of forms to fill out. A few practices use tablets which allow you to confirm or enter data that goes directly to their electronic medical records. Others may ask you to fill out forms online before the appointment. In any case, many patients roll their eyes or groan, inwardly wondering why they have to fill out the same information every time they visit. Perhaps you’ve assumed it’s just so the insurance company will reimburse them.
Instead, view this as an opportunity to ensure that the most essential and recent information about your health ends up in the doctor’s hands. Making certain that the record is accurate and up-to-date can be the difference between getting properly diagnosed and not.
Last month we suggested you use the SIDM Patient Toolkit — by either printing out or saving the PDF on your smartphone — so your symptoms, medicines, allergies, and questions are at your fingertips. Now is the time to use that information.
Be completely honest and share the whole list of medicines and supplements you’re taking. You may be surprised how much taking a supplement can affect your health. One patient never told his cardiologist about the vitamins, minerals, and supplements he was taking in addition to the blood-thinner he was prescribed for a heart condition. It had been difficult to regulate his blood levels. Every time he was tested, his results indicated his blood was too thin or not thin enough. A visiting family member heard the story, while helping staunch a particularly bad bleed from a simple bump into a gate. Later she noticed that the patient had gingko biloba in his kitchen. She asked, “Are you taking this?” The patient replied, “Yes. It’s for my memory.” The relative said, “I think you better call your doctor and tell him, today.”
Gingko biloba is a top-selling herbal supplement that may help with improving cognitive function. However, one side effect is that it can promote bleeding. While it says on the package that people using blood thinners shouldn’t take it, the font is small and can easily be missed. The cardiologist didn’t know and didn’t think to ask because the patient never included it on his list of medications. Once he stopped taking the gingko biloba, they were finally able to successfully regulate his blood thinner.
Don’t assume that just because what you’re taking is an over-the-counter supplement, it can’t harm you. There are many popular supplements that can impact your health and your test results. It depends on what medical conditions and prescribed drugs you are taking. It is important to include all of them on the list. The biggest concern about supplements, even the ones that can be very helpful, is that they’re not regulated. The amounts of the helpful ingredients can vary by bottle and by manufacturer.
It’s also vital that you tell your clinical team the medicines that have been prescribed that you’re skipping. On the forms the doctor’s office hands you is a space to list all of your medicines. List everything you take or are supposed to take on the left side. Then add “Stopped Taking” or “Take Infrequently” and why. Don’t be afraid of telling them that it’s too expensive or that you had side effects. Getting an accurate diagnosis may depend on that information. Not telling them that you’re taking a prescription every other day that was supposed to be taken daily can lead your diagnostician down the wrong path. That can cost you more money and discomfort for unnecessary tests and treatments.
New Hampshire-based primary care physician Mary Braun, MD recently wrote an article about this in a national blog read by physicians. She shares examples of how miscommunications happen, even in the simplest situations, and how that can affect a patient’s health. In one example, her assistant asked a patient if there had been any changes in their medications. The patient said there were not. The assistant’s note said, “The patient confirms that the medication list is complete and accurate.” But that’s not what the patient said because that’s not the question they heard.
Dr. Braun’s article tells the real story. “When the patient says, “Nope, no changes,” he means, “I’m still not taking that blood pressure medicine I can’t afford that you prescribed a while ago. I’m still taking my cholesterol medicine in the morning because I can’t remember to take it at night, and I’m taking it every other day because I read on the internet that it’s bad for you, but you tell me it’s good for me, so I’ve compromised at taking it every other day. I’ve been doing it that way for months, so that hasn’t changed either.”
Because she didn’t know the patient was skipping doses, the doctor became concerned when the test results indicated the statins weren’t working.
Also, don’t be afraid to use these forms to share information that’s private, potentially embarrassing, or illegal. For example, if you’re using drugs, even recreationally, or having relations you don’t want your spouse to know about, or anything else that’s private, you can trust the medical team to use that information to help get you healthy and not share it. That’s what the HIPAA law is for.
The forms you’re filling out may also ask you why you’re visiting today. Use the headline you wrote and practiced at home. If the space is too small, then edit it down to the two or three key words. For example, you can write something like “stomach pains”; or “daily headaches”, or “feeling very tired.” It will help frame the conversation you’ll have in the exam room, with the nurse first, and the doctor or nurse practitioner later.
In the exam room
Finally. You’re in your paper gown. You’ve been weighed and your blood pressure tested. The doctor arrives with your updated information in hand. Perhaps she asks how you are or why you’ve come to see her. Now is the time to try out the less than three-minute symptom report you prepared. At this point, keep it factual and focused on physical symptoms.
Put your symptoms into context. Is this the first time you’ve experienced this? How bad is it? Is it affecting your sleep, your job, your responsibilities, or your ability to live a normal life? Is it more frequent in the morning? Does the pain only happen when you sit a certain way, etc.?
The doctor will probably examine you with a focus on your new symptoms. Expect a lot of questions related to your symptoms. What do you feel? On a scale of 1 to 10, how bad does it get? When did it start? How often does it happen? How long does it last? Does anything make it feel better? Does anything make it feel worse?
The doctor’s office can feel rushed or you may be nervous around the doctor. Let your preparation help you feel confidant and calm. Focus on being thorough and accurate when you reply. Use your notes so you don’t miss anything key. You’re prepared because you already have the essential information at hand: your list of symptoms, how they’ve changed over time, and their impact. Cross out each point as you make them so you don’t repeat yourself or forget to say something.
You may get blood and/or urine tests while still in the office. Before the doctor leaves the room for that to happen, ask her if she looked at all of the supplements you’ve listed and will any of those affect the test results? If they will, the doctor may suggest you stop taking the supplement and return for the tests. The same question applies to any additional tests the doctor might order.
If the doctor orders any tests, it’s perfectly fine to ask why they are ordering that test and what they are looking for. We recommend that you ask when to expect results and how you can view them. Will they be available via the patient portal or will the office mail them to you? Remember, no news is no news, not good news. Always follow up to get your results. (More on that in a future column.)
After the physical exam
Everything you’ve done so far will help the doctor identify a working diagnosis. There is a big difference between a working diagnosis and a final diagnosis. A working diagnosis is like a scientist’s hypothesis. Based on all the information on hand — your symptoms, your physical exam, your initial test results — he will make an informed guess at what is causing your symptoms. The final diagnosis can take more time.
Whether this conversation happens in the exam room or in the doctor’s private office, she will most likely say something like, “I think your [symptom] might be due to [diagnosis].” At that point, she will either suggest more tests or may prescribe medicine or another form of treatment. Sometimes, this is when the primary care doctor recommends a specialist. If she doesn’t tell you what she thinks might be the cause of your symptoms, it is perfectly appropriate to ask what she thinks it might be.
Remember, this can be just the start of a conversation. As the central member of Diagnosis Team YOU, this is when you get to ask questions. Your questions are important because they’ll help you know what to expect, what to look for, and what to avoid.
Finally, if you get home after your appointment and think of something that might be important about how you’re feeling or your symptoms change, call the office and leave a message for the doctor.
In November, we will cover what type of questions you should ask in each situation: further testing, treatment, or referral to a specialist.
The Society to Improve Diagnosis in Medicine (SIDM) catalyzes and leads change to improve diagnosis and eliminate harm from diagnostic error. We work in partnership with patients, their families, the healthcare community, and every interested stakeholder. SIDM is the only organization focused solely on the problem of diagnostic error and improving the accuracy and timeliness of diagnosis. In 2015, SIDM established the Coalition to Improve Diagnosis, to increase awareness and actions that improve diagnosis. Members of the Coalition represent hundreds of thousands of healthcare providers and patients—and the leading health organizations and government agencies involved in patient care. Together, we work to find solutions that enhance diagnostic safety and quality, reduce harm, and ultimately, ensure better health outcomes for patients. Visit our website at www.improvediagnosis.org, and follow us on Twitter or Facebook.
Helene M. Epstein writes about patient safety and family health. Her goal is to help readers apply important new information to their own lives. Subscribe to her website at www.hmepstein.com and follow her on Twitter or Facebook.
Dx IQ is made possible with funding from the Mont Fund and the Gordon and Betty Moore Foundation.
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Resources for Patients
At SIDM, we are focused on raising awareness about the magnitude and impact of diagnostic errors as providing tools and resources to equip patients to participate in achieving an accurate and timely diagnosis.