Woe to the patient who brought a list of questions or symptoms to a doctor visit in the 1800s, when one French physician coined the term “illness of the little paper.” And as recently as 1985, scientific research looked into whether people who asked questions of their doctors might have a mental illness. An article recently published in STAT contrasted that regrettable history with today’s friendlier environment.
Now we talk much more about the doctor-patient relationship, shared decision making and the patient’s voice. Patient advocacy groups and organizations like Patients as Partners and PALADIN are elevating the patient’s perspective and lived experience. CSL, a global biotech company that makes medicines and vaccines, lists Patient Focus as chief among its list of values.
Beth, a registered nurse and a rare disease patient, reminds herself and others that they have options – and one of those options is to find a doctor who will answer your questions and respect you as a partner in decisions. She has chronic inflammatory demyelinating polyneuropathy (CIDP), a neurological condition that can weaken arms and legs.
“There’s no longer only one doctor or one option – there are more resources out there for patients to make more empowered decisions,” she recently told CSL employees at the company’s location in King of Prussia, Pennsylvania. “There are still generations of doctors that believe that what they say will go. And conversations with them can be tough. But the environment is definitely changing – now that there are more options for treatment and care providers. And if that particular care provider is not working for you the way they should, then it’s time to find someone who will advocate for and with you.”
That 1985 study showed that questioning patients were no more likely to have a mental illness, nor were they more likely to be falsely reporting real medical problems. Not long after, the University of California, San Francisco, began assisting breast cancer patients in preparing lists of questions for their doctors, according to the STAT article co-authored by Karen Sepucha, director of the Health Decision Sciences Center in the Division of General Medicine at Massachusetts General Hospital and an associate professor in Medicine at Harvard Medical School.
Sepucha’s research into the practice at UC-San Francisco, published in 2002, found that breast cancer patients benefitted from the practice of creating a list of questions. They reported better communication and fewer barriers to communication. Using that same model, Massachusetts General Hospital has enlisted a group of student volunteers to offer a free service for patients and families who want to develop a list of questions.
Read the STAT article: The question list is a simple way to help patients prepare for appointments
Learn more about how to become a more educated and empowered patient: