A Patient’s Internal Conflict of Interest: to Mention a Symptom, or Not?
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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Good stuff! I agree that we need to speak up, and like many women I’ve been guilty of most if not all the things on your list. I’ve had to learn that the things that seem trivial, or big (thanks to internet self-diagnosing), or downright embarrassing to me are none of the above to my doctors. I went through treatment for stage 0 DCIS so I got a front row seat to a lot of this stuff for the first time. I went from yearly to weekly communicating and learned a lot. I do think sometimes you have to will yourself to be comfortable or pretend you’re comfortable when you’re not.
Now that I’m trying to be better about reporting, it’s kind of funny because what I thought of as symptoms turn out to be just getting older. So I’ll ask my doctor about this or that and he’ll say, “How old are you again?” or “That happens to me all the time.” What’s nice is, I can ask him anything without fear of feeling stupid. I told him that and he said “Your questions aren’t stupid and you’re supposed to ask.” Which will come in handy because learning how to be old is new to me :) (and I’m very grateful for the chance)
Here’s another perspective on why patients may not come forward with distressing symptoms.
I’m a heart attack survivor who was misdiagnosed with acid reflux in the E.R. and sent home in mid-heart attack, despite presenting with symptoms of crushing chest pain, nausea, sweating and pain radiating down my left arm. I left feeling profoundly embarrassed and apologetic for having made a fuss “over nothing” and wasting five hours of the very valuable time of the E.R. staff – while truly sick people had been lined up in the waiting room!
This was followed by two full weeks of increasingly debilitating symptoms – but hey! at least I knew it wasn’t my heart, right?
After all, a man with the letters M.D. after his name had told me quite clearly: “It is NOT your heart!” I am one of those ‘thoughtful, articulate’ patients you describe – yet there was NO WAY I was going to repeat that humiliating and dismissive experience in the E.R. – until the pain was so unbearable I had no choice but to return, this time to a revised Dx of “significant heart disease” – and was taken immediately from the E.R. to the O.R.
We know that women are under-diagnosed for heart disease (seven times more likely to be misdiagnosed than male heart attack patients are) and then we are under-treated even when we are appropriately diagnosed. Our outcomes are more deadly compared to men’s outcomes, too.
In fact, researchers from Oregon even came up with seven ‘treatment seeking delay behaviors’ in women heart attack patients whose excuses for NOT coming forward will sound very familiar to all of us who have decided, for whatever reason, NOT to pick up the phone and call 911 or our physicians even when we know something is terribly wrong. More about this study on HEART SISTERS: “Knowing & Going: Act Fast When Heart Attack Symptoms Hit” at: http://myheartsisters.org/2009/05/22/know-and-go-during-heart-attack/
But this identified reality of reluctance to come forward is compounded (some might say caused?) by the common experience of many female heart patients who are dismissively misdiagnosed in mid-heart attack with everything from anxiety attacks to indigestion to menopause (a great all-purpose misdiagnosis for whatever ails you!)