In a recent essay published in the New England Journal of Medicine, Dr. Suzanne Koven* recalls many conversations she had with her father (like her, a physician) in which he loved to reminisce about his own long career in medicine. But there’s one reminiscence she still bristles at, as she explains(1):
“The story was about ladies – always they were ‘ladies’ – and something he called la maladie du petit papier: ‘the disease of the little paper.’
“They would come to his office and withdraw from their purses tiny pieces of paper that unfolded into large sheets on which they’d written long lists of medical complaints. ‘You know what I did then?’ Dad asked. I did, but I let him tell me again anyway. ‘I’d listen to each symptom carefully, and say ‘yes’ or ‘I see’.
“That’s all. And when a lady finally reached the end of her list, she would say: ‘Oh doctor, I feel so much better!’
“The point is, all those ladies needed was someone to listen.”
The notion that whatever was bothering these silly ladies was all in their heads was once a long held truism within the medical profession.
Far easier to simply dismiss the scribbled complaints on those petits papiers as the product of attention-seeking neurotics than to treat the ladies seriously.
Dr. Koven quotes a medical dictionary definition of the condition called la maladie du petit papier like this:
“An exhaustive list of purported ailments — [is] carried around by a neurotic patient, often accompanied by extensive documentation of each bowel movement or sip of water.”
(Does it strike you that some of the “worried well” members of the Quantified Self movement, those keen documenters of every possible trackable health indicator from elimination to hydration, might also merit a similar definition?)
But I digress.
As Dr. Koven wrote, another physician named Dr. John F. Burnum set out to challenge the popular notion that the disease of the little paper was a disease at all back in 1985.
Also published in the NEJM, Dr. Burnum reported on a study of 900 patients seen in general medical practice over a 4-month period. About 8% of these patients brought in written lists of their medical concerns. But Dr. Burnum observed no higher incidence of mental illness and no lower incidence of physical illness in the list-making patients than in the non-list-makers.
Dr. Koven explained:
“Dr. Burnum concluded that patients who make lists are not neurotic, but simply seeking clarity, order, information, and control.”(2)
That conclusion should come as a great relief to those of us who also believe that women are not necessarily suffering from mental illness just because we write down our questions/concerns before a doctor’s appointment.
We don’t, by comparison, consider people who make grocery lists to be neurotic.
Indeed, we all know what happens when we find ourselves in the middle of the grocery store without a written list: we forget to get the important stuff we came in to buy, and we end up with a bunch of stuff that shouldn’t be on anybody’s list!
As a person whose home decor features colourful Post-It reminders stuck on the fridge door, bathroom mirror, my laptop screen, the inside of the front door, my coat pockets and almost every other surface in my home, I instinctively move towards writing things down – all kinds of things! – so I do not forget about them.
I spend less than one hour each summer with my wonderful cardiologist during my annual follow-up appointment. Is it unreasonable to expect during the other 8,759 hours of the year while coping on my own with refractory angina due to coronary microvascular disease that I might come up with one or two important questions about my diagnosis that I need to discuss with him at our next visit?
If I don’t write these down, chances are excellent that I will not remember them when our summertime visit rolls around. And if I do not remember them, it may mean a subsequent time-sucking visit or phone call that could be entirely avoided if only I’d brought my petit papier with me to the original appointment.
And that’s why it’s so important to bring a written list of important concerns or questions I have for my physicians.
Having my petit papier in hand not only ensures I’ll be able to address issues in an orderly fashion, but it prevents the patient’s classic last-minute “Oh, one more thing…” scenario just as the doctor places a hand on the doorknob to leave the room. In fact, as the excellent Prepared Patient Forum reminds us, asking questions is important at every stage of our health care, whether during a routine check-up or during a hospital stay.
It turns out that we aren’t the only ones convinced that a patient’s written list is actually a smart idea. The University of Minnesota recommends that patients complete written lists both before and after their medical appointments, including these two printable forms they’ve prepared for us to do that:
- Preparing for Your Appointment (for example, this form has spaces for you to write down your symptoms, when did they start, what makes them better/worse?)
- Results of the Appointment (for example, this form has a space for your physician to complete this section: “Please write the diagnosis down for me and explain it so that I understand what it means.” This would help prevent what so often happens when a patient is too overwhelmed, too ill, or too embarrassed to ask a physician to slow down, to translate jargon, or to repeat a complex diagnosis.
Dr. Koven candidly admits that even in her own medical practice, she sometimes resents the sight of a patient pulling out a list during an appointment:
“I wonder if I resent these lists because they threaten me. The ‘control’ that Dr. Burnum thought patients reasonably sought is wrested, in part, from the doctor.
“When a patient pulls out that little piece of paper, I feel a shift in the exam room: the patient taking charge of the agenda, my schedule running late, the reins of the visit loosening in my hands.”
Things certainly must have seemed less threatening in the good old days when Dr. Koven’s Dad was in practice.
My late mother would have never in a million years dared to whip out a written list of questions during a doctor’s visit, for this was simply not done in the unspoken hierarchy of medicine back then. Same reason she would have never asked for further clarification of something he’d just told her – even if she did not understand one word, which was why our later follow-up questions to her (“What did the doctor say?”) were so often met with vague confusion. (Neither would she have ever requested a second opinion, for to do so might insult the doctor).
An elegantly dressed older woman in one of my recent women’s heart health presentation audiences reminded me of my Mum. At the end of my talk, she raised a beautifully manicured hand and asked me:
“Carolyn, my doctor says I have a heart rhythm problem. What does that mean?”
Too bad she hadn’t whipped out this list while he was giving her this diagnosis. . .
(1) Suzanne Koven. The Disease of the Little Paper. N Engl J Med 2014; 371:2251-2253 December 11, 2014 DOI: 10.1056/NEJMp1411685
(2) Burnum, JF. “Maladie du petit papier: is writing a list of symptoms a sign of an emotional disorder?” N Engl J Med 1985;313:690-691
*I also quoted Dr. Susanne Koven in the preface of my new book, “A Woman’s Guide to Living With Heart Disease” (Johns Hopkins University Press, November 2017)
Q: What happens when you bring a list to your medical appointment?
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