As an emergency physician and patient advocate, I regularly meet people who are confused and frustrated because they don’t feel involved in their own care. Their doctors aren’t listening to them. There is often a disconnect between what they want and what their physicians provide.
Several movements in the medical community are working to increase patient participation in their treatment and to train doctors to seek it out. These will be important steps, but in the meantime, it’s critical that you assert your role in the diagnostic process. You need to understand your illness, what you should do about it and how soon treatment can begin. And you need to get to that point without unnecessary tests or delays.
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You hold the key to transforming your health. Here are five steps to forming a partnership with your doctor, based on guidance I share in my new book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests:
1. Find a physician who supports shared decision-making. Your doctor should listen to you, care about you and be comfortable treating you as a partner in decision-making. Pay attention to whether your doctor gives lip service to the notion of partnership or actually demonstrates it through his or her actions.
Physicians who believe in a partnership will actively solicit and welcome your suggestions. Those who don’t will quickly exhibit signs of impatience and defensiveness when they are challenged. Such doctors may be relying on what we call “cookbook medicine” — following a recipe in which symptoms and complaints lead to a battery of tests to rule out certain conditions. This approach can put patients on an assembly line of potentially unnecessary screenings, unwanted anxiety and in some cases, real harm. The vast majority of doctors who practice cookbook medicine mean well; they’re just used to doing things a certain way. As long as you are respectful while asking questions, the doctor should welcome your input.
2. State your intentions. Doctors aren’t mind readers; many are used to patients who are passive participants in their health care. Whether you’re seeing a new doctor or someone with whom you’ve had a long relationship, make it clear that you want to be involved as a partner in the diagnostic process. After all, you are the expert when it comes to your own body. Ask about your doctor’s thought process and inquire about what he or she thinks you have. If your doctor isn’t sharing, you can say: “I know what it is I’m worried about. Can you explain to me what it is you are worried about?”
3. Help your doctor help you. Most diagnoses can be made by the story, or history of your illness, alone. Yet one of the most frequent patient complaints is that doctors don’t listen. No doubt, there are limitations and pressures on every physician’s time, but neglecting to listen to patients can result in misdiagnoses.
Help make sure your doctor pays attention by conveying your story effectively. Use your own words, not the medical terms you imagine apply to your condition. Communicate what is most worrisome to you and don’t hesitate to raise that concern again if the doctor doesn’t seem to be responding to it. Emphasize what surprised you about your symptoms and talk about how pain or discomfort has affected your daily life. And if a doctor’s reliance on yes-or-no questions is keeping you from getting your story out, go ahead and answer those questions with narratives, not single words.
4. Understand each test. Every test your doctor orders should be done for a specific reason — and you should know what it is. Doing “basic labs” or a “screening CT” can be like fingerprinting the entire city to search for a suspect — ineffective and likely to deliver confusing results. Not to mention, every test, even the most basic blood draw, has potential harms, although a CT has many more, including increasing your lifetime risk of cancer.
If your doctor orders lab work, ask what he or she is looking for and whether there are any possible harms — and alternatives. You need to agree with your physician’s diagnostic approach — and should walk away from each visit feeling listened to, understood and empowered. If the doctor isn’t around to discuss any tests that have been ordered, let a nurse be your advocate, helping you get the access or answers you need.
5. Make decisions together. Perhaps you face two or three possible diagnoses. What’s going to be done to try to narrow it down? What’s the natural course of each possible illness? What can you do to start feeling better? If you have a physician who’s your partner, all your questions should be answered.
If a potential diagnosis doesn’t make sense to you, ask for more information. Assure your doctor that you don’t need 100 percent certainty, you just want to know what he or she knows. Sometimes, doctors don’t share information because they’re unsure if a patient can handle uncertainty. What they don’t realize is that being told nothing often brings about even more uncertainty than an honest, open discussion.
Partnering with your doctors can have transformative effects on your health. Try these steps at your next visit. Make your physicians into the ideal doctors you always wanted by showing them the way.