As I spoke, the family seemed to relax visibly, and began to break into smiles. “Oh, that's wonderful news, wonderful news!” I smiled too, automatically, although I did not think my news—a biopsy finding of advanced glomerulosclerosis, irreversible kidney failure—had been so wonderful. It was true that this particular kidney biopsy had been done because of heavy proteinuria and newly diagnosed kidney failure in an older man with a lung nodule; the working diagnosis had been a paraneoplastic membranous nephropathy, and the specter of lung cancer had been hanging over the scene for the last few days. My news made the possibility of cancer recede. The nodule eventually was found to be benign, and we were left to deal with the aftermath of the not-cancer diagnosis, the good news that wasn't.
If the one-year mortality for new end-stage kidney failure exceeds that for most new cancer diagnoses, why is it that this family, like many others, dreaded the latter more than the former? The diagnosis of cancer, of course, is rich with history, images, metaphors. Although the age of hiding cancer diagnoses—of whispering them to relatives in corridors—has waned, the fear of cancer has not.
The author and activist Susan Sontag, diagnosed with advanced breast cancer in her forties, protested the metaphorization of cancer, writing in Illness and its Metaphors: “The healthiest way of being ill is one most purified of, and most resistant to, metaphoric thinking. Yet it is hardly possible to take up residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.” She survived 30 years, long enough to also protest the metaphors of plague and fear that came to be associated with AIDS. She argued, in essence, that attaching a personality to a biological illness was self-defeating and inappropriate—that the personality of the illness then trumped the person with the illness.
I can see that metaphors might be self-defeating or damaging. I remember one woman with metastatic cancer weeping, not because she was dying, but because she couldn't summon the strength to ‘fight’ any more. In AIDS clinics, the virus is often personified as ‘smart’ or ‘tricky’ and able to circumvent treatments that are not taken regularly. Does this help ensure compliance? The answer is not clear. In fact, in the cancer literature there is substantial debate about how and whether to use pugilistic or sports metaphors in describing treatments.
But what set of images is the patient bringing to the story, if personal experience or popular culture does not inform his or her understanding of the disease? What happens to a relatively obscure illness, one without well-recognized signs or symptoms—an illness without metaphors?
Since the majority of our patients know little about kidney disease before they meet us, the story is really ours to begin. “Whether he wants to be or not, the doctor is a storyteller, and he can turn our lives into good or bad stories, regardless of the diagnosis,” wrote the literary critic Anatole Broyard, in his book Intoxicated By My Illness. As a nephrologist, I find myself wondering what kind of story I have started for each patient. Do I tell a morality tale to the patient with chronic hypertension and diabetes, a story of warning and watchfulness? Should it be a story of hope, with smooth waters on the horizon? Or a story of inexorable decline, lassitude and failure?
I became very close with the patient who reacted with such relief to the diagnosis of advanced kidney disease rather than cancer. I saw him progress, quickly and inexorably, to dialysis-requiring kidney failure. I watched him suffer with infections, fatigue, confusion and cramps. He lost his appetite, developed constant diarrhea, and became weak and bedbound. He died only 5 months after I met him. To the end, I don't think that he or his family ever understood that the news I had brought was bad, or that kidney failure itself had been the final blow to his fragile health. Perhaps it was for the best that they did not really understand. Then again, that's what oncologists used to say, in whispers, outside the rooms of patients who were pretending not to listen.
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