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?

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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.