August 23rd, 2010
12:43 PM ET

What does your doctor hear when you talk?

Whenever a patient asks me about the side effects of a particular medication, I point to the very long roster of symptoms listed for the drug. “It’s anything any patient has ever experienced,” I say, then try to help prioritize the symptoms into the more common ones versus the rarer ones.

This list has always represented for me the presence of the patient’s voice in medicine. It turns out, though, that this is not the case. Not long ago I was reading article in the New England Journal of Medicine, and I learned that these side effects listed on the package insert are not the ones the patient actually complains of. No, they are the symptoms the patients’ doctors choose to report, the doctors’ impressions of what the patients are describing.

Of course, doctors have always filtered patients’ words. Some of this is the result of the historical difference in lay versus medical language. A patient may say that she had trouble breathing, though did not cough up any blood. The doctor would then write that “the patient admitted to dyspnea, but denied hemoptysis.”

Doctors often prioritize patients’ symptoms differently from the way patients do. A patient may be most concerned about a painful ingrown toenail, but the doctor may focus on the anginal symptoms of chest pain instead.

And then doctors may—diplomatically or not—casually toss some patients’ concerns aside entirely. I have been guilty of this myself. I have some patients who seem to stockpile hordes of complaints for me, unloading them in heaps during our 15-minute visit. I listen and nod, but choose not to enter into the medical record the ones that seem clinically insignificant.  This stems from both the reality of the time crunch, and my clinical experience that most of these minor aches and pains are self-resolving.

But maybe I’m wrong. Maybe I’m doing a disservice to my patients by acting as a filter.  A growing body of evidence suggests that the gap between what patients say and what doctors document can be ample. Patients often report symptoms much earlier than did doctors. Several studies have shown that patients’ report of symptoms correlate more accurately to actual health status than did the doctors’ reports.

Some researchers are suggesting that patients be given a direct avenue for their voices to be heard. For clinical trials assessing new medications, why couldn’t patients enter their symptoms directly into a drug database rather than telling the doctor and then having the doctor decide which symptoms should be entered?

And for regular medical visits, perhaps there could be a section of the computerized medical record for the patients to access directly to list all concerns. This would be a legitimate part of the record, and then I would have my part in which I’d place my clinical impressions of these symptoms.

Seems like a good idea to me. I bet that we’d uncover many more side effects sooner. It would also remind us, that doctors need to view patients’ words as primary data, and that we should be careful about filtering the patient’s voice too much.

Danielle Ofri is a writer and practicing internist at New York City’s Bellevue Hospital. She is the editor-in-chief of the Bellevue Literary Review. Her newest book is Medicine in Translation: Journeys with my Patients.

You can follow her on Twitter and Facebook, or visit her homepage

soundoff (275 Responses)
  1. gubba

    most of you are a bunch of moronic whiners you dont have real problems. the reason the docs dont listen is you could put up with such a mountain of bs. ps fibromyalgia is not a real disease no matter how much you piss and moan

    August 24, 2010 at 17:30 | Report abuse | Reply
    • Gubba is Stupid

      Gubba, why don't you come over here and I will show you with a lead pipe how REAL Fibromyalgia is.

      August 24, 2010 at 17:35 | Report abuse |
  2. Robster

    Amazing that the ingrown toenail example was used. My friend's mother had multiple physical problems at the age of 90, but it was an infection from a toe that went systemic that ultimately killed her, and it seems like toes weren't really high on her physician's list when prioritizing and dealing with her complaints. While it's true we all have to die of something and reaching 90 is a blessing, dying of an infection was a slow and extremely painful death for her. The pain her family experienced watching this was made far worse with the realization that the infection could have been treated at one time.

    August 25, 2010 at 08:09 | Report abuse | Reply
  3. Doc Mary

    I have the disease unhelpfully named chronic fatigue syndrome. (I also was in the "Science" study and was positive for XMRV). Two years ago I was in a major relapse because I lost the immune modulator that had been helping me. I had the 37kDa Rnase-L defect, a natural killer cell count of 2%, abnormal SPECT, VO2 MAX, and Holter Monitor tests, recurring EBV, HHV-6 Variant A, HHV-7 – and cytomegalovirus (CMV). CDC only reconizes the last. My specialist put me on Vistide. I needed to get infusions closer to home, so he called an infectious disease specialist with an infusion center there, and he said "Sure." When I arrived, however, he had my chart in his hands. "We can't give you Vistide," he said. Why not? I replied. I have a recognized disease, CMV, and Vistide is an approved drug for CFS. The doctor frowned at me and said, "Vistide is too strong for CFS. If you had AIDS or were on chemo, I could justify it. But all you have is CFS." And he refused to give me the infusion. I had to fly back to the original specialist to get that dose, then two weeks later for the next dose we had it arranged at a local hospital. What can you do? It was an approved drug for a recognized disease, but the prejudice against seeing the severity and complexity of so-called "CFS" is very, very strong. We have been invisible for 25 years.

    August 25, 2010 at 20:06 | Report abuse | Reply
    • DocMary

      Ooops! That should be, "Vistide is an approved drug for CMV."

      August 25, 2010 at 20:09 | Report abuse |
  4. Kyle Alcosiba

    An ingrown toenail, also known as onychocryptosis or unguis incarnatus, is a painful condition of the toe. It occurs when a sharp corner of the toenail digs into the skin at the end of or side of the toe. Pain and inflammation at the spot where the nail curls into the skin occurs first. Later, the inflamed area can begin to grow extra tissue or drain yellowish fluid.`

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