A Complaint against “Complaints”

Having just emerged, aged 82, from the Valley of the Shadow, thanks to a just-in-time-ly removal of a cancerous uterus, I am full of bright shiny ideas, most of which are probably worthless. But one, I'm convinced, is not. That is the need to expurgate the word “complaint” from the medical lexicon for defining reportage by elderly as well as other patients about their symptoms.

In this era of health maintenance organizations, with doctors even more hurried than before, and many patients even more cowed than before, the pejorative word “complaint” further discourages patients from spelling out for their doctor how they feel, especially after treatment when, say, mentioning an unexpected side effect implies criticism of the doctor. This reluctance, in turn, can deprive doctors of feedback that could be helpful in patient care.

At the risk of making myself appear like the Grinch and distinguished physicians at a major teaching hospital appear overly defensive, here is a case in point:

After my hysterectomy and node removal, the surgeon referred me to a radio-oncologist. I felt in no state for any further treatment, even after the standard maximum of 8 weeks for recovery. I told the surgeon that bowel and bladder were still mad as hornets, but he said that an internal exam showed my tissues to be healed.

After the first treatment, as the radio-oncologist was leaving the room, he called back, “I predict you will feel no side effects.” Half-kidding, I asked how accurate his predictions generally were. “Very,” he said.

Well, he was wrong. And now that I consider it, why wouldn't he be? Never before in history has there been the critical mass of old people that now exists in the industrialized countries, with my generation serving as the prow of the ice-cutter in regard to how the medical profession should deal with us. Intellectually, physicians know that we may heal more slowly and respond to medication far more sensitively than before, but in practice their tendency is to rely on standard rather than minimum dosages and thus at times overtreat us.

The radio-oncologist gave me the conventional 700 rads. Three hours later, I was felled by toxic fatigue, had developed a fiercely burning anal sphincter, got diarrhea, and found that the hot flashes I had been experiencing since hormone replacement therapy was recently denied me had become flame-like (with cheeks turning crimson and nose pulsating until I looked like Rudolph the Red-Nosed Reindeer). I phoned the radio-oncologist but he was unavailable. The next day he was also unavailable. This was the week between Christmas and New Year's, so I talked instead to his resident, and then to his secretary. I was told that the doctor had received my messages but felt that my symptoms were not related to radiation.

What?

In return, I said I was disposed to take my chances on recurrence of the cancer and would skip the rest of the treatments. They begged me to reconsider. I also had a genuine complaint, one shared by elderly and other patients who undergo procedures that force them to lie unmoving on a hard table for considerable lengths of time—namely, a painful back. Mine continued to be agonizing because of a previous spinal fusion and a laminectomy. Though the radiation itself had taken 13 minutes, I had been left on the table beforehand for 25, with knees in extra high stirrups, while the professionals did the needed computations. The masseur I later turned to for help found “knots” in my back, and I was forced to use a heating pad both day and night. I wrote a memo to the radio-oncologist, with a copy to the surgeon. The surgeon phoned me, and in my verbal report about the sphincter I used the phrase “burning tail feathers.” This he found so hilarious that he promised this area would be protected if I would please return for a second treatment. He also promised to speak beforehand to the radio-oncologist.

And indeed, the next treatment was much better. First, much of the computation was done while I was seated comfortably on a chair; second, I was helped onto the table as if I were a cross between the Queen of Sheba and Barbara Bush, and a pillow was inserted under my lower spine. Third, the radiation was reduced from the standard 700 rads to the minimum of 500, and its duration from 13 minutes to 8. After I got home, the tail-feather problem did not return. However, to a diminished degree, the toxic fatigue, diarrhea, and hot flashes did. Because I felt weird, I took my blood pressure (which I occasionally must do for hypertension). Two days earlier, it was 135/65; on radiation day, it was 175/100. I was so shocked that I asked our housesitter, a registered nurse, to take the blood pressure. Same result.

Yet the radio-oncologist continued to insist that my responses were idiosyncratic. I therefore wrote him a second memo (which became the germ of this article):

As for your impression that my symptoms are unique, may I suggest that you or one of your residents or your secretary phone your elderly patients the day after treatment and ask whether they have any new sensations to report. Without being asked, many, if not most, patients will not volunteer such information. It requires a degree of courage and medical sophistication to stop being the “good,” i.e. uncomplaining, patient and instead risk being considered a crybaby, or a neurotic who is imagining things, or a hypochondriac. Laypeople, particularly old ones, are reluctant to “bother” their doctor. They prefer to “suffer in silence.” Because they are so in awe of white coats and intricate machinery, they do not report the kind of symptom that would actually be helpful for the white coats to know about but is termed by them a “complaint.” Nobody wants to be considered a complainer, with its implication of whining or self-pity.

In short, from the physician's point of view, “no news” should not automatically be viewed as “good news”—and the Pentagon's former advice about gays, “Don't ask, don't tell,” should be turned on its head: Doctors should ask, patients should tell. A simple symbolic way to bring this about would be to substitute for the pejorative “complaint” the neutral word, “concern,” thus retaining the traditional “CC” for doctors while encouraging patients to confide what's really bothering them.

Following my third treatment, 10 weeks after surgery, the side effects were blessedly muted. This led me to wonder whether the standard 6 to 8 weeks is sufficient time for the innards of an elderly patient to recover from hysterectomy plus node removal. Perhaps the fault, dear Brutus, is not in our stars but in the medical manuals still relied on by many a doctor despite their having been outdated by the Golden Oldie revolution, which is about to be joined by the Boomer generation.

It's not just manuals that need updating; so does the pharmaceutical provision of dosages for older patients. We need not just baby aspirin but also baby every-drug. (I, for example, have to cut my lowest dosage of clonidine into quarters and take one every second night.) Most important is for more physicians to realize that unless the reported reactions by us geriatric patients stop being brushed aside, linguistically as well as otherwise, we won't be able, as we would like, to bless them on our deathbeds. Instead we may curse them for the “harm” they promised Hippocrates not to “do” but nonetheless unthinkingly did.

• Copyright ©2004 by the American College of Physicians