To com?-plain or a??be gooda?? is an appar?-ent dilemma for some patients with seri?-ous illness.
Yes?-ter?-day I received an email from a close friend with advanced breast can?-cer. Shea??s got a lot of symp?-toms: Her fatigue is so over?-whelm?-ing she cana??t do more than one activ?-ity each day. Yes?-ter?-day, for exam?-ple, she stayed home all day and did noth?-ing because she was sup?-posed to watch a hockey game in the evening with her teenage son and other fam?-ily mem?-bers. Her voice is weak, so much ita??s hard to talk on the phone. She has dif?-fi?-culty writ?-ing, in the man?-ual sense — mean?-ing she cana??t quite use her right arm and hand properly.
a??Ita??s some?-thing I would never men?-tion to the doc?-tor because it is very sub?-tle,a?? she wrote. a??But it has not improved and if any?-thing has wors?-ened over??time.a??
There are more than a few pos?-si?-ble med?-ical expla?-na?-tions for why a per?-son whoa??s receiv?-ing breast can?-cer ther?-apy might not be able to use her right arm. But thata??s not the point of todaya??s les?-son. Whata??s note?-wor?-thy here is that the patient — an edu?-cated, thought?-ful woman whoa??s in what should be the mid?-dle of her life and is try?-ing as best she can to sur?-vive — doesna??t think these symp?-toms are worth mentioning.
Her doc?-tor is an unusu?-ally car?-ing and kind oncol?-o?-gist, not an intim?-i?-dat?-ing sort. The prob?-lem here is the patient doesna??t want to bother her doc?-tor with more details about how shea??s been feel?-ing, so ita??s hard to fault the physi?-cian in this case. You might say in an ideal world the doc?-tor or a nurse or some?-one would be screen?-ing each patient more fully, com?-pletely, ask?-ing them every ques?-tion imag?-in?-able about every body part. Then again, what kind of patient would have time for all that at say, weekly treat?-ments? ??I dona??t blame my friend, either, although Ia??ve encour?-aged her to speak up about her concerns.
As things stand, most data on med?-ica?-tion tox?-i?-c?-ity is reported by physi?-cians and not by patients directly, an infor?-ma?-tion fil?-ter?-ing sys?-tem which may lessen our knowl?-edge of drugsa?? effects. This prob?-lem, for?-mally con?-sid?-ered a few months ago in a??New England Journal of Medicine??per?-spec?-tive a?? The Miss?-ing Voice of Patients in Drug-Safety Report?-ing, reflects some physi?-ciansa?? ten?-den?-cies to dis?-miss or min?-i?-mize patientsa?? symp?-toms and, in the con?-text of clin?-i?-cal tri?-als, can have adverse con?-se?-quences in terms of our under?-stand?-ing of treat?-ment tox?-i?-c?-i?-ties and, ulti?-mately, clin?-i?-cal outcomes that might oth?-er?-wise be improved.
Herea??s a par?-tial list of why some thought?-ful, artic?-u?-late patients might be reluc?-tant to men?-tion symp?-toms to their doctors:
1. Respect for the doc?-tor a?? when the patient feels what hea??s expe?-ri?-enc?-ing isna??t worth tak?-ing up a physiciana??s time, what Ia??d call the a??timeworthya?? problem.
2. Guilt a?? when a patient feels she shouldna??t com?-plain about any?-thing rel?-a?-tively minor, because she appre?-ci?-ates how lucky she is to be??alive.
3. Worry a?? when a patienta??s anx?-ious or afraid the symp?-toms are a sign of the con?-di?-tion wors?-en?-ing, so she doesna??t men?-tion them because she doesna??t want to hear about the pos?-si?-ble explanations.
4. Apa?-thy a?? when a patient stops car?-ing about improv?-ing her cir?-cum?-stances dur?-ing treat?-ment, per?-haps because she feels hope?-less or that shea??s doomed to expe?-ri?-ence unpleas?-ant symp?-toms for the rest of her??life.
5. Want?-ing to be per?-ceived as a??gooda?? or a??stronga?? a?? how can you com?-plain about your hand?-writ?-ing if you want your physi?-cian (or spouse or lover or kids) to think youa??re tough as??nails?
I could go on with this??list…
Why this mat?-ters is because many patientsa?? treat?-able symp?-toms go under-reported. And because if patients dona??t tell their doc?-tors whata??s wrong, ita??s unlikely their physi?-cians will take??note.
The pur?-pose of med?-ical care is to make peo?-ple feel bet?-ter. Patients, speak??up!
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