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 NEJM 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 “time-worthy” 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!

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