WHAT CAN YOU DO TO ADVOCATE FOR YOURSELF?
Keep detailed notes and records: Dr Mitchell recommended keeping a journal where you log as many details as possible about your symptoms. Her suggested prompts include: “What are your symptoms? When do you feel those symptoms? Do you notice any triggers? If you have pain, what does it feel like? Does it wax and wane, or is it constant? What days do you notice this pain?” In addition to your notes, keep records of all of your lab results, imaging, medications and family medical history. It is analogous to seeing your accountant at tax time, Dr Mieres said: “You certainly do not show up without receipts.”
Ask questions, then ask some more: Prepare a list of questions that you would like to ask ahead of your appointment, and be prepared to ask other questions as new information is presented. If you aren’t sure where to start, Dr Mitchell recommended asking your doctor this: “If you were me, what questions would you ask right now?”
Bring a support person: Sometimes it can help to have a trusted friend or relative accompany you, particularly when discussing a treatment plan or difficult medical issue. When people are ill, scared or anxious, it can facilitate “brain freeze,” Dr Mieres said. “We stop thinking, we don’t hear adequately, we don’t process information.” Speak with your support person to clarify their role and discuss your expectations, she added. Do you want them to take notes and be a second set of ears? Or do you primarily need them there for emotional support? Are there times where you might prefer that your friend or relative leave the room so that you can discuss private matters?
Focus on your most pressing issue: Providers are often short on time, and the average primary care exam is only 18 minutes long, according to a study published in 2021. DrMieres recommended taking 10 minutes before your appointment to jot down bullet points that concisely outline the reason for your visit so that you can communicate with your doctor efficiently.
Pin down next steps: Ideally, you should leave your appointment feeling reassured. Tell your provider that you would like to understand three things:the best guess as to what is happening; plans for diagnosing or ruling out different possibilities; and treatment options, depending on what is found. If you’re still being ignored, what are your options?
Switch providers: A study using data from 2006 and 2007 estimated that approximately 12 million adults were misdiagnosed in the United States every year and about half of those errors could be harmful. If you are concerned that your symptoms are not being addressed, you are entitled to seek a second opinion, a third or even a fourth. But in many cases that may be easier said than done. It’s not always quick or simple to find another specialist who takes your insurance and has immediate appointments available.
If possible, try to get an in-network referral from your current doctor. For example, you can say: “Thank you for your time, but I would really like to seek another opinion on this. Could you refer me to another specialist in your area?” If you don’t feel comfortable asking your doctor for a referral, you can also speak with a patient liaison or nurse manager. Alternatively, you can ask friends and family, or call your insurance company to find someone in-network.
Reframe the conversation: If you decide to stick with your current provider, but that person doesn’t appear to be listening, DrMieres recommended that patients try redirecting the conversation by saying something like:“Let’s hit the pause button here, because we have a disconnect. You’re not hearing what I’m saying. Let me start again.” Or, alternatively: “I’ve been having these symptoms for three months. Can you help me find what is wrong? What can we do to figure this out together?”
Look to support groups: There are support groups for a multitude of conditions that may provide useful resources and information.
Tami Burdick, who was diagnosed in 2017 with granulomatous mastitis, a rare, chronic, inflammatory breast disease, found help from an online support group for women with the same condition. Initially, she was referred to an infectious disease specialist who dismissed a breast biopsy found to contain bacteria. “I developed horrible, painful abscesses that would open and drain on their own,” Ms Burdick, 44, said.
In her search for answers she conducted extensive research on the disease. And from the support group she learned of a gene sequencing test that could identify potential pathogens. Ms Burdick asked her surgical oncologist to order the test and discovered she had been infected with a specific microorganism associated with granulomatous mastitis and recurrent breast abscesses. It took seven months of investigating, but she finally had an answer. To help other women, she self-published a book about her experience in collaboration with her oncologist.
“If the infectious disease specialist had looked further into it,” she continued, “perhaps I could have started antibiotics right away, then and there, and never have required surgery.”
Appeal to a higher authority: If you are being treated in a hospital setting, you can contact the patient advocacy staff, who may be able to assist. You might also address the problem with your doctor’s supervisor.
Finally, if you are dissatisfied with the care that you’re receiving, Dr Mitchell said, you may consider reporting your experience to the Federation of State Medical Boards (for US patients). “Any instances of abuse, manipulation, gaslighting, delaying diagnoses – those are reportable events that providers need to know about,” Dr Mitchell said. “Doctors need to be held accountable.”
By Christina Caron © 2022 The New York Times