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5 Reasons Why Patients Don’t Mention Symptoms To Their Doctors

To com­plain or “be good” is an appar­ent dilemma for some patients with seri­ous illness.

Yes­ter­day I received an email from a close friend with advanced breast can­cer. She’s got a lot of symp­toms: Her fatigue is so over­whelm­ing she can’t do more than one activ­ity each day. Yes­ter­day, for exam­ple, she stayed home all day and did noth­ing because she was sup­posed to watch a hockey game in the evening with her teenage son and other fam­ily mem­bers. Her voice is weak, so much it’s hard to talk on the phone. She has dif­fi­culty writ­ing, in the man­ual sense — mean­ing she can’t quite use her right arm and hand properly.

“It’s some­thing I would never men­tion to the doc­tor because it is very sub­tle,” she wrote. “But it has not improved and if any­thing has wors­ened over time.”

There are more than a few pos­si­ble med­ical expla­na­tions for why a per­son who’s receiv­ing breast can­cer ther­apy might not be able to use her right arm. But that’s not the point of today’s les­son. What’s note­wor­thy here is that the patient — an edu­cated, thought­ful woman who’s in what should be the mid­dle of her life and is try­ing as best she can to sur­vive — doesn’t think these symp­toms are worth mentioning.

Her doc­tor is an unusu­ally car­ing and kind oncol­o­gist, not an intim­i­dat­ing sort. The prob­lem here is the patient doesn’t want to bother her doc­tor with more details about how she’s been feel­ing, so it’s hard to fault the physi­cian in this case. You might say in an ideal world the doc­tor or a nurse or some­one would be screen­ing each patient more fully, com­pletely, ask­ing them every ques­tion imag­in­able about every body part. Then again, what kind of patient would have time for all that at say, weekly treat­ments?  I don’t blame my friend, either, although I’ve encour­aged her to speak up about her concerns.

As things stand, most data on med­ica­tion tox­i­c­ity is reported by physi­cians and not by patients directly, an infor­ma­tion fil­ter­ing sys­tem which may lessen our knowl­edge of drugs’ effects. This prob­lem, for­mally con­sid­ered a few months ago in a New England Journal of Medicine per­spec­tive – The Miss­ing Voice of Patients in Drug-Safety Report­ing, reflects some physi­cians’ ten­den­cies to dis­miss or min­i­mize patients’ symp­toms and, in the con­text of clin­i­cal tri­als, can have adverse con­se­quences in terms of our under­stand­ing of treat­ment tox­i­c­i­ties and, ulti­mately, clin­i­cal outcomes that might oth­er­wise be improved.

Here’s a par­tial list of why some thought­ful, artic­u­late patients might be reluc­tant to men­tion symp­toms to their doctors:

1. Respect for the doc­tor — when the patient feels what he’s expe­ri­enc­ing isn’t worth tak­ing up a physician’s time, what I’d call the “timeworthy” problem.

2. Guilt — when a patient feels she shouldn’t com­plain about any­thing rel­a­tively minor, because she appre­ci­ates how lucky she is to be alive.

3. Worry – when a patient’s anx­ious or afraid the symp­toms are a sign of the con­di­tion wors­en­ing, so she doesn’t men­tion them because she doesn’t want to hear about the pos­si­ble explanations.

4. Apa­thy – when a patient stops car­ing about improv­ing her cir­cum­stances dur­ing treat­ment, per­haps because she feels hope­less or that she’s doomed to expe­ri­ence unpleas­ant symp­toms for the rest of her life.

5. Want­ing to be per­ceived as “good” or “strong” – how can you com­plain about your hand­writ­ing if you want your physi­cian (or spouse or lover or kids) to think you’re tough as nails?

I could go on with this list…

Why this mat­ters is because many patients’ treat­able symp­toms go under-reported. And because if patients don’t tell their doc­tors what’s wrong, it’s unlikely their physi­cians will take note.

The pur­pose of med­ical care is to make peo­ple feel bet­ter. Patients, speak up!

*This blog post was originally published at Medical Lessons*

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One Response to “5 Reasons Why Patients Don’t Mention Symptoms To Their Doctors”

  1. Peggy polanecz says:

    I think another reason is that they get sidetracked with other issues at the visit. That’s why it is so important to come to the appointment with a written list of questions & issues.

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