Preparing for Your Medical Visit with Questions
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
SEPTEMBER 29, 2023
“La maladies’ du petit papier” (also known as “the illness of the little paper”) is an old saying I had never heard until recently. Attributed to the clinic of Jean-Martin Charcot in the late 19th century, it was intended as a derogatory term for patients. The phrase was usually directed at women who came in with lists of their purported ailments. These women were seen as hypochondriacs that unfairly used their doctors’ time.
A good place to begin is considering what you already know about your diagnosis and treatment, and what else you want to know.
Times have changed. Medicine is now committed to shared decision making, and for a patient to fully participate and appreciate the possibilities, she must ask questions. No matter how smart we are, how many articles we read or how many times we Google our situation, we will never know as much as our doctors do. A New England Journal of Medicine article published in 1985 reported that “patients with lists” were not more likely to have mental illness nor less likely to have physical issues than those who came unprepared with questions.
By 1999, a study at the University of California, San Francisco looked at ways to improve communication and collaboration between breast cancer patients and their oncologists. Those who came with lists of questions were described as more confident, less anxious, and more actively engaged in their physician visits. Medical care has changed a lot over the past twenty-five years, and the time pressures on clinicians is immense. All of us want to make the best use of our time with our doctors, and we hope to leave our appointments feeling more comfortable, confident, and better informed. We can achieve this by actively asking questions.
Clearly, we are thinking about preparing for medical visits with thoughtful question lists and goals in mind. A good place to begin is considering what you already know about your diagnosis and treatment, and what else you want to know. There are the general and obvious questions about which drugs are part of a proposed chemotherapy regiment, what are the anticipated side effects, and what are the likely risks and benefits.
However, there are other critical questions that you may or may not want to ask. Remembering that no one has a crystal ball and that it is impossible to predict any one person’s prognosis accurately and fully, there are existing statistics about any given situation. Hearing, for example, that 60% of people have gastrointestinal (GI) issues with a particular drug may not be especially distressing because you can be reassured that your caregivers will be giving you medications or other strategies to deal with these problems. Hearing, however, that 60% of people do not have a positive response to that same drug, meaning that their cancers do not shrink, is more distressing.
We all want to receive treatments that are very likely to help us live longer and stay healthy, but there is never a way to be certain that any one treatment is going to be useful to any one individual. All we have are the numbers, and they are descriptors of pools of people in a similar situation; they are not a promise of what is going to happen to you.
Before asking a question, consider if you want to know the answer. It might be asking how likely drug X will be in shrinking the tumors in your lungs. That is a somewhat different question than the real question we all have, which is: How long do I have? No one can answer that one, and you may not truly want to know the best guess, which has been surmised from data. That answer may be very different than what lies in your future.
Before a medical visit, think about your question list and, perhaps, ask a family member or friend to think about it with you. Again, we are talking less about the basic questions regarding treatment times or plans and more about the larger questions related to your health and future. There are some resources available online to guide your thinking: