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Reassurance

From the Division of Hematology, Mayo Clinic, Rochester, MN; MRC Molecular Haematology Unit, Weatherall Institute of Molecular Medicine, University of Oxford, Oxford, UK

Address reprint requests to David P. Steensma, MD, 200 First St SW, Rochester, MN 55905; e-mail: steensma.david{at}mayo.edu

August heat scorches the upper Midwest. When I walk into the clinic, it is shortly after sunrise, but already uncomfortably warm. Inside, the air conditioning has been churning all night, holding the heavy, breathless air at bay.

Today's theme is gynecologic oncology. It is my turn to see new consultations. As I pick up the dossier for the first new case, I find only a single, thorough consultation note and a crisp, sensible referral letter. The story these documents relate is straightforward, though it makes for melancholy reading. The young woman I am about to meet was still in her twenties, enjoying a new baby—the first fruits of a blissful marriage—when a deeply invasive cervical cancer surprised her. Now, less than a year after she awoke from anesthesia to her surgeon's assurances that her worries were over, a chest x-ray, performed to evaluate a nagging summer cough, has revealed dozens of new nodules in her lungs, some of them pitted with cavities. Frightened by the diagnostic possibilities, unhappy with scheduling delays, and unable to pick through her HMO's bureaucratic tangle, she has abandoned the network and has come to see me for evaluation of what is almost certainly advanced metastatic disease.

The final line of her clinical record is startling, shocking away the remaining mists of my early morning fatigue. In light of the ominous picture painted by the rest of the note, the concluding words of the referring physician seem out of place, even flippant: I reassured the patient.

"Reassured her?" I moan, startling a colleague sitting next to me. "Whatever could he have reassured her about?!" Her situation is terrifying. Some mothers with cancer pray that they will live long enough to see their children finish school; this woman will not see hers start. Before the chest x-ray, she assumed that her breathlessness was bronchitis. Now she knows she is drowning. "Reassurance" indeed—but for whom?

It's not that I can't understand the impulse. Medicine would be a chilling enterprise without the motivation to do whatever possible to make bad situations a little better. But a lie breathed through silver is still a lie. Careless or glib reassurances do harm. Worse than platitudes, they are a betrayal. In the face of this woman's darkness, it seems to me that any reassurances must come from the sphere of the chaplain, not the honest physician.

So what can I offer? I can, of course, sing the standard oncologist's litany—the promising melody that keeps us going from day to day when so much of what we hear is in the minor key, or simply unsingable. I know these lyrics by heart, having practiced them repeatedly during training, and some of the verses are vaguely comforting. "Every patient is different; some do much better than their doctors predict." "You haven't had any therapy yet. You are younger and healthier than many patients with this disease, and you might respond well to treatment." "There is a tremendous amount of research going on throughout the world. Advances are being made all the time." "Regardless of how your illness unfolds, I will do my best to make sure your pain is treated aggressively, and all of us will keep your dignity in mind." And the special stanza for cases such as this where recurrent tumor has not yet been proven: "Although we strongly suspect metastatic cancer, we don't have a firm diagnosis yet."

Although we oncologists sing these notes often, we know that we are not always on key. Some patients do far worse than their doctors imagine; most are about average. "First-round" treatments fail often, and sometimes nothing works. Even in this era of unprecedented research funding, clinically meaningful advances are uncommon, and although we may be intellectually willing to admit the astonishing complexity of biology, and to acknowledge that all science is limited by human stumbling, it is desperately hard to be patient. Likewise, despite tremendous gains in the art and science of palliative care, pain remains a fearsome enemy. Dignity is hard enough to maintain through the minor ailments that are common to all of us, let alone over the tumultuous course of an intense, life-threatening illness. And sadly, when metastatic cancer is strongly suspected, it is almost always confirmed.

But as I read the referral note again, I wonder if I've mounted a high horse that is about to carry me galloping past something important. The reassurances given by her hometown physician could have been genuine; am I too deeply mired in cynicism or too fired with indignation to realize it? Even in her gloomy circumstances, there are consolations that I, too, can offer without overreaching the narrow limits of my expertise.

Reassurance that I will not forget to ask about your child each time that you come to the clinic, and that even though I may be desperate to get home to my own family, I will listen to your stories.

Reassurance that I will not forget the searing pain that comes each time you think about the milestones that you will miss.

Reassurance that I am mindful that your husband suffers, too, even when he does not admit it because he thinks you need his strength.

Reassurance that when you come to the clinic, we will talk to you as if you were a normal person—a relief from the kid glove–treatment or malign neglect practiced by some of your family and friends—but that we will never forget that you are not "normal."

Reassurance that when all your hair is gone, and wasting or open sores have stolen your beauty, that we will choose our words carefully.

Reassurance that we will not be bound by rigid protocols and will use all of our creativity to try to solve your problems.

Reassurance that there are no foolish questions in the consultation room.

Reassurance that I will not make you feel silly for placing hope in unproven treatments. I know that you are desperate, and I am humble about what I have to offer; I will do what I can to keep you from harming yourself.

Reassurance that when you visit me in the clinic, I will let you finish your sentences and will not hint to you that you are overstaying your welcome.

Reassurance that I will return your telephone calls promptly. Even when your concerns seem minor to me, you may find it difficult to think about anything else.

Reassurance that I will write to your insurance company when they are uncooperative, because you have enough worries without thinking about how you are going to pay your treatment bills.

Reassurance that I will not wait until it is too late to talk to you about hospice and about end-of-life plans.

Reassurance that when pain and air hunger worsen, we are not left comfortless; there is morphine.

Reassurance that after you are gone, we will not soon forget you.

This sounds like the prelude to an elegy. But, as I walk into the consultation room to meet the young woman and her husband, I hope they will hear it as a song of compassion.

Two days later, I sit in a window office on the 12th floor of the clinic, looking far to the west where gray parking lots give way to an endless patchwork of farm fields and prairies. I watch a thick line of thunderclouds slowly approach, thankful for the change in weather that they promise. But the storm's distant rumbling is ominous in view of the bad news I need to deliver.

Soon (before I feel ready, but will I ever?) the woman and her husband return. Their faces are somber; they know what I am about to say. I wish I could share an unexpected surprise with them, and tell them that their story will end happily; that her lungs harbor benign granulomas or an easily treatable lymphoma, or that she really does have bronchitis; that somehow, the chest x-rays had been switched. Such pardons are too rarely granted.

Like a growing chorister, my voice cracks awkwardly as I break the fatal news to her. I expect tears or anger, but she surprises me. She seems temporarily paralyzed, and then asks a few questions that make me wonder if she understands the import of what I have just told her. Suddenly, in the middle of one of the questions, she explodes, weeping with a ferocity I have rarely seen and for which I was not prepared. As she rocks back and forth, moaning the name of her baby between desperate gasps, her husband futilely attempts to console her.

Somehow, the storm has broken prematurely, here inside the clinic; the air is electric with chaos and with the sick, malevolent heaviness that Midwesterners recognize as heralding a cyclone. For almost 10 minutes, she cries and rages (it seems much longer), and I sit silently, glancing out at intervals toward the line of motionless clouds, still 20 miles away. Is this a sacred moment? Right now my only thoughts are profane, and "reassurance" seems a dirty word.

Finally, she composes herself and stands up. She grabs my arm awkwardly, then briefly embraces me; her husband loosely shakes my hand. Collectively, we exhale. They tell me a friend has recommended an oncologist much closer to home. I know him; he is both sensible and sensitive, and he knows how to sing the same songs that I do. I am reassured that she will be in his care.

They leave in silence. I will not see her again.

Author's Disclosures of Potential Conflicts of Interest

The author indicated no potential conflicts of interest.

NOTES

Author's disclosures of potential conflicts of interest are found at the end of this article.

Submitted February 24, 2004; accepted March 23, 2004.

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