by Carolyn Thomas ♥ @HeartSisters
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?
- Six rules for navigating your next doctor’s appointment
- How to communicate your heart symptoms to your doctor
- The five questions your doctor is probably not asking you
- Say what? Do patients really hear what doctors tell them?
- Medical jargon: do you need a translator?
- The ’18 Second Rule’: why your doctor missed your heart disease diagnosis
28 thoughts on “Should you bring that list of questions to your doctor?”
My husband has a 25 year history of heart disease and we both loved his cardiologist…this past year I had a widowmaker heart attack of which the symptoms were severe and was rushed from the ambulance to the cath lab. I have minimal heart damage because of the fast treatment, thank God….
Then my followup appointments came…they were all about the manly exchange and “how are you” to my husband!! I finally went by myself and forced the doctor to talk to ME!! Of the 5 drug cocktail I was given at the hospital, I had bad reactions to 3 of them after discharge including new asthma and fluid on the lungs. He said I could take more drugs for that reaction and continue on those other drugs. I refused that and he changed drugs.
I take Plavix and aspirin for the stent. No problem there. Even though my LDL is spot on, he had me on statin drugs at max dose and I was in constant pain. now I am off those as well. I have no cardiac issues they can find to explain the blood clot that blocked off the artery. I was polite but strong at refusing any more statins. I am less fond of this doctor than my husband but at least he listens to me now…
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Jeez Louise! Why should it be necessary to leave your hubby at home just to get your cardiologist to address you directly?!?! You are teaching your cardiologist to talk to you… Best of luck to you, Chris!
Carolyn– I am an interventional cardiologist and I have to say that if I’m spending an hour with a patient, that visit needs to result in a hospital stay. The fact that you see your doc only annually suggests to me that you are not particularly ill, hence your cardiologist should be able to dispense with you in the 15 minutes he or she has allowed for your visit. I am quite certain that your cardiologist wants to commit suicide when your name shows up on the list. They will be behind the entire day because of you. Think about it…
Hello Dr. Diegler (or whatever your real name is):
Perhaps you are also a trained psychiatrist, as you seem able to diagnosis my cardiologist’s suicidal ideation based on the flimsiest evidence. You’ll be relieved to know that his mental health actually seems remarkably stable in spite of my annual visits, and he even seems genuinely glad to chat with me, routinely scheduling 45 minutes for each appointment; usually we discuss emerging cardiac research (specifically on coronary microvascular disease and women’s cardiovascular health) – and oh yes, his little son.
Dr Diegler, here is something for you to think about.
Your reply to this post should be circulated to all trainee medics as an example of medical practice of the worst kind. It is the classic response of one who mistakenly believes that the possession of a medical degree (or two) defines him as the sole possessor of a robust and functioning intellect. Not so – patients have functioning brains too – yes, even the women.
If we are paying you (richly) for a service we have the right to understand what it is you are doing. You have the responsibility to ensure that your patients fully understand the state of their health and the nature of your costly interventions.
The fact that you feel the need to “dispense” with a patient in 15 minutes in order to move on to the next Bill does neither you nor the medical profession any credit (pardon the pun).
Shame on you. I pity your patients.
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I appreciate this blog on so many levels, Carolyn! Also find the comments helpful. This is an ongoing issue with the ladies in my support network…
I will be quoting you and sharing. Thinking about this from a different perspective will help many. Thank you!
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Hello Steph – I often think that the comments are the most interesting thing about my blog posts… Thanks so much for weighing in here.
I would also direct patients to the Agency for Healthcare Research and Quality’s (AHRQ) “Questions are the Answer” campaign.
A tide change is coming – rather than patients being discouraged from asking questions, there is recognition that patients should be empowered to ask questions and which questions to ask! I hope this continues.
Growing up with a father as a doctor, often I would hear that same pooh-poohing of patients with lists. Now I go in not only with a list, but my entire personal health record (PHR) and several articles to help doctors understand the patient view and me.
I believe we should be colleagues in care, no more paternalism (in my case literally). This does seem to threaten providers as it means they don’t get sole control, but they’ll just have to learn how to be okay with that as I’ll just have to learn to be okay with living with my chronic conditions.
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Thanks so much for sharing that AHRQ link, Erin – it’s a valuable resource, as is your own excellent blog post on Teaching Doctors. “Colleagues in care” is a smart goal in our own health care.
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I did change doctors when the one was not taking my note taking and questions seriously. My current Primary is wonderful, the cardiologist PA-C is okay, but not a great listener.
Thanks for the Results of Appointment questions. I may be a nurse, but can be overwhelmed by a new diagnosis or still working on questions I should ask while the doctor is rattling off directions, etc. Sometimes the question don’t even occur to you until two or three days later.
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That is so true, Elizabeth! I’ve often felt as if my brain’s suddenly working in slow-motion when trying to make sense of something that makes no sense at the time. For example, after the cardiologist in the ER first said the words “significant heart disease”, I could see his lips moving and I knew that words were coming out of his mouth, but honestly he might as well have been speaking Swahili…
Making lists and tracking my symptoms for years MADE me neurotic . . . it really did. I’m sure that it stems from the fibromyalgia and seeing well over 40 specialists (in the late 1990s) who, no matter what my detailed tracking of symptoms were, handed me psychiatric referrals.
Consequently, with my heart condition I’ve become rather blase and may jot down a few points the day before my appointment . . . or not. And if I don’t understand something, I GOOGLE.
I suspect it wasn’t the lists you made that caused your distress, as much as it was being dismissed by over 40 specialists. Being dismissed over time makes it much easier to just stop trying to stay engaged – which is an exhausting activity at the best of times! I too rely on post-appointment Dr. Google (which is how I discovered a potential new drug interaction issue that popped up for me over the holidays, and which I’ve now added to my own list!)
The reason the symptom list was so distressing is that I became hyper-vigilant and focused on how I was feeling, raising my stress level, increasing and expanding the symptoms. Going to the doctor represented “hope”, leaving the doctor created despair which then exacerbated the symptoms – a ferris wheel ride on crack.
Love your reference to DOCTOR Google. I too found a drug I was taking had created narcolepsy and addictive behaviors.
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Such a good post! NOW when I pull out my list, my docs lean forward and listen. We have an actual back-and-forth about where to go and how best to get there, in which we clearly respect each other. But to far too many of their recent predecessors, my list was still more evidence of my worried-well, attention-seeking neurosis. Yet another reason to ignore everything that I said.(See “When Your Doctor Mislabels You as an Anxious Female”.)
Just yesterday I was going through a box of things I had cleared from my study, as it was about to become a guest room for a week – in 2009. The box had become a sort of time capsule. And there were several daily To Do lists and 2 for doctor’s appointments. In regard to the appointment lists, I was impressed with how detailed and well-organized I was, and that every single thing I had recorded was symptomatic of a serious condition (actually 3 different ones) only recognized by the docs some years later. But at the time, my doc would smile and say, “Ah, ever erudite…” and at the end of the appointment, “Lovely to see you.”
Now, with appropriate treatment, I recognize that by then I was sinking deeper into a state of ill-health that would have killed me. In fact, it nearly did. But the more desperately I insisted that something was wrong and proposed diagnoses (which have turned out to be spot on – btw) the more that doc (and others of the time) were certain that I was a nut case.
I now tell everyone that they MUST change docs the moment they think their doctor dislikes or doesn’t respect them . Easier said than done, alas. But a doc who doesn’t respect a patient is a danger to that patient’s health, even life.
That’s a sad story, Kathleen – re-reading your appointment notes that were essentially ignored by your physicians years ago. Excellent advice to change docs when that niggling suspicion of having concerns/questions ignored happens.
Mais oui….deux petit papiers. I learned that two identical numbered questions on paper went over the best; one for me and the other for the healthcare practitioner. Many times a quick overview by the doctor/nurse allowed for “skip question 3, it is the same as answer to 1.” It didn’t matter that I asked the same questions again as to why I experienced such intense heart pain in the absence of obstructive coronary heart disease.
I did that with all my cardiologists over all these past years. And guess what? That list of questions I handed the doctor went into my medical record.
It showed that I was persistent, insistent and consistent. I have always been a list/task maker for other events so why not for your important heart?
Good post Carolyn.
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“…persistent, insistent and consistent….” I’m going to go embroider that mantra onto a pillow, Joan! All patients should heed that example you set. Thanks for weighing in here.
Not only questions, but answers, too! I had a condition (not heart involved), was given the test results, a prescription that masked the problem and sent on my way. It was up to me to discover, if I could, the cause and an actual cure, turns out it was an interaction between a prescription medication and an OTC. It was well enough known to be noticed by Johns Hopkins and Mayo Clinics, but my primary at the time had no clue. I know doctors are busy, their work is never done, but a simple Google search on the problem let light on the side effects of the two medications. Heck, he had a laptop sitting right there.
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Thanks for this timely reminder, Elizabeth! Drug-drug interaction is a huge issue that can be dangerous if not caught. Good detective work – but we have to wonder why patients must be the detectives here…