Marilyn Gardner, in her 2014 book called “Between Worlds: Essays on Culture and Belonging“) wrote about a compelling conversation she once had:
Yet our physicians aren’t trained to embrace our stories, but instead to ask right away, “What brings you here today?” to kick-start a brief Q&A that can most efficiently solve the diagnostic mystery sitting across from them. . .
So it’s a good idea to have your own answer ready before you even get to the doctor. That’s the recommendation of Dr. Leana Wen, author (along with Dr. Joshua Kosowsky) of When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests. Dr. Wen explains:
“Doctors end up asking about symptoms rather than the story. And [people] then get conditioned to talk about their symptoms instead of their stories. But studies have shown that over 80 per cent of diagnoses can be made just by listening. By that, they mean listening to the story, the open-ended story of what happened, rather than asking a list of yes-no questions.”
Dr. Wen also suggests that you don’t start off by simply telling the doctor that your chest hurts. Instead, tell the story of it. For example:
- when it started
- if it’s been painful before
- what you were doing when you first felt it
- how it felt
- how often you feel it
“If a [person] were allowed to tell the story, they might also feel more listened to as well,” as Dr. Wen says.
“Blame the 18-Second Rule!” warns Dr. Jerome Groopman, professor of medicine at Harvard, in his highly-recommended book “How Doctors Think“:
“Eighteen seconds is the average time it takes a doctor to interrupt you as you’re describing your symptoms. By that point, he/she has in mind what the answer is, and that answer is probably right most of the time.”
Subsequent studies have suggested that 18 whole seconds of being listened to might even be a luxury.
When Mayo Clinic’s Dr. Victor Montori and his colleagues researched this time-to-interruption issue in 2018, for example, the majority of physicians in their study waited only 11 seconds on average before interrupting their patients, as he explained:(1)
“Time constraints and the use of electronic medical records can hinder patient-clinician interaction. Patient-facing interactions (in contrast to computer-facing ones) account for only about 50 per cent of the clinical time, potentially promoting more frequent interruptions.”
I will never forget the heart attack patient who told me her own story of choosing words carefully. Her first cardiac symptoms included an alarmingly debilitating fatigue that she’d never experienced before. When she reported this to a physician, he prescribed anti-depressant medications for her.
But she knew she was NOT depressed, so she asked him point blank:
“Will this drug help me to carry my laundry hamper up the stairs? Because right now, I’m no longer able to lift it.”
In other words, not just “I’m so tired”, but “I’m so tired that I can no longer _______”.
Harvard researcher Dr. Catherine Kreatsoulas has written about the words women use to describe their cardiac symptoms. She and her colleagues found a difference between how men and women describe chest pain, which is the most commonly reported heart attack symptom in both sexes. But she also found that women sometimes used different language to describe their symptoms compared to men.
When I first interviewed her here,(2) I was surprised by her description of witnessing women arguing with Emergency physicians – even in mid-heart attack:
“I cannot count the number of times I observed a physician leaning over a female heart patient in the Emergency Department while asking: ‘So tell me about your chest pain’ – and the woman very quick to respond:
“Well, I don’t really have chest pain. I have a discomfort, it’s more like pressing, I wouldn’t call it chest pain, I would describe it more as a bad ache. . .”
“And much to my amazement, I would observe the physician record in the patient’s notes, ‘No CP’ – meaning no chest pain!“
As Dr. Kreatsoulas discovered, it’s relatively common among female heart attack patients to use words like “pressure, heaviness, fullness, tightness, aching, burning” instead of the word “pain” to describe their chest symptoms. She told me later that she wonders how many women’s charts say “No CP” because of the words they said to a physician – not because they don’t have chest pain.
In a Medscape interview with cardiologist Dr. Eric Topol, Dr. Leana Wen offered suggestions on closing this communication disconnect between how patients tell their stories and how doctors listen. For example:
♥ Better listening: “I find that 80 per cent figure for “diagnosis from listening” astounding. If we could invent a test that would give us the right diagnosis 80 per cent of the time, we would consider it a miraculous test. Instead, as a result of technology and pressure on a doctor’s time, we are spending less and less time listening. If physicians can listen in the extremely busy and chaotic setting of the ER, and if we can focus on our patient, not only will it save time, but it will also prevent misdiagnoses.”
♥ Patient empowerment: “I would encourage patients to really understand themselves, to tell a better story, and not be afraid to advocate for themselves in a way that is collaborative with their physician.”
Dr. Wen, by the way, believes that physicians rarely see themselves as the kind of doc who is not a good listener:
“Doctors tell me, ‘I totally agree! This is a big problem in the medical profession! But I am the doctor who listens; these other doctors, THEY are the ones who DON’T listen’!”
There are two sides to the importance of story-telling in medicine: women need to be more strategic in learning to “tell a better story”, as Dr. Wen recommends – and physicians need to truly listen to women (which, according to many emerging studies on implicit bias in medicine, can be a challenge).
Women need to clearly describe how having specific symptoms is affecting our ability to function. We need to stop self-diagnosing (“It could be just a pulled muscle…”). We need to stop minimizing the severity of our symptoms. We need to stop apologizing to healthcare professionals for making a fuss.
And we need to stop sounding like Elizabeth Banks in her brilliant little 3-minute film – in which she calls 911 and says sheepishly, “Sorry to bother you. . . but I think I might be having just a little heart attack. . .”
As Dr. Wen says, physicians must truly listen to each person no matter how “extremely busy and chaotic” the setting.
To paraphrase the words of the great physician Sir William Osler in the late 19th century, your patient will tell you what the diagnosis is – if you listen.
1. Singh Ospina, N., Montori, V., Phillips, K.A., Rodriguez-Gutierrez, R. et al. “Eliciting the Patient’s Agenda – Secondary Analysis of Recorded Clinical Encounters.” J Gen Intern Med (2019) 34, 36–40.
2. Kreatsoulas et al. “Reconstructing Angina: Cardiac Symptoms in Women and Men.” JAMA Intern Med. 2013; 173(9):829-833.
NOTE FROM CAROLYN: I wrote much more about doctor-patient communication in my book A Woman’s Guide to Living with Heart Disease, (Johns Hopkins University Press). You can save 30% off the book’s cover price if you order it directly from Johns Hopkins University Press (use their code HTWN). Or ask for it at your local library, your favourite independent bookshop, or order it online (paperback, hardcover or e-book) at Amazon.
Q: How has being able to tell your story helped the way you were diagnosed or treated?
-Visit Marilyn Gardner’s blog at Communicating Across Boundaries, and read her brilliant 2016 guest post here called “Marilyn Gardner’s Stupid Phrases for People in Crisis”