Unit 8Section 3 Exercise 10East versus West: Pope's White Coat Syndrome

It is reported that, despite medicine’s ever-increasing efficacy, approximately half of patients in the United States seek alternative care, and both patients and physicians voice increasing dissatisfaction with the practice of mainstream medicine. In the following works, compare/contrast the views of patients and physicians regarding alternative medical therapies.

The White Coat Syndrome, Rebecca Pope

I had hardly unpacked in Bethesda with my new life and new partner when the call from Chicago came. What my mother had for months been claiming was a bleeding hemorrhoid turned out to be the malignancy we had all been trying to deny. Surgery in a few days. I offered to fly home. “No, we can handle it,” my father said.

“She was really lucky,” the surgeon pronounced afterwards, “the tumor was low, which inhibited metastasis. Everything looks fine, but she should have a course of radiation just to be safe. In case there are any stray cells.” We exhaled; only a few wandering cells, and they could easily be mopped up with a little radiation. Of course the colostomy bag was unlucky, but there was a general air of reprieve and relief in which my mother, as they say, “put it all behind” her (a rather unfortunate phrase under the circumstances), participated. Without complaint she learned to manage the colostomy. She took the radiation treatments. We didn’t think to question that recommendation, it came, after all, from the man in the white coat, and we were all amateurs at cancer then. She was compliant; she was a good sport; she kept her pain and fear and frustration to herself which, I suppose, was lucky for the rest of us.

Of course the seven weeks of radiation burned her and made her sick, no doubt sicker than she allowed her children to see. But she soon regained her physical strength, and as the number of check-ups and tests which pronounced her “Clean” accumulated, we began to regain our faith in her body and in her continued presence. After five years without recurrence, she became a statistical “survivor” and we celebrated. How close she had come, how lucky we were.

Time to forget.

Two years later pain returned. She had a hard time sitting. Probably scar tissue, the doctor said. The pain got worse. The MRI wasn’t clear. Into the hospital for a biopsy. It took a few days to get the results: “good news, it’s benign.” The tightness in our shoulders, out heads.. our stomachs, tightness we hadn’t been conscious of, began to dissolve. We could celebrate again, even if she was still in pain. The next day another call. “We’re really sorry, we don’t know how this could have happened. There’s been a mistake: it’s malignant.”

More appointments and consultations. More men in white coats. They were confident they could get it out. More surgery. My father, brother and sister waited at the hospital (“No, you don’t need to come,” my father said again. I waited by the phone. This time the surgeon came out of the operating suite early, too early. He brought them to a small windowless room, the kind of room that is supposed to ensure privacy and confidentiality but is really about shielding other waiting families from someone else’s bad luck. He shut the door. My father knew. “Sorry. The tumor is resting up against her backbone. And up against the sciatic nerve. We couldn’t get it. She’s probably got a year, maybe a year and a half.” Later, one of the other doctors said that this new tumor was probably caused by the mop-up radiation after the first surgery, the radiation done “just to be safe.” The doctors put a few radiation needles directly into the tumor before they closed, but that was all they could do because—and this was news to us—she had used up her life-time allowance of exposure earlier. The maximum exposure guidelines are necessary, of course, because too much radiation can kill you.

My father forbade the doctors to tell my mother that she had twelve to eighteen months. Perhaps this was denial, perhaps a sense that no one, even someone in a white coat, can ever really know when someone else will die. Patients surprise. Perhaps he knew of those studies that suggest that many people who are put on the clock die by the clock because they are so invested in being good patients. But she really didn’t need to be told. She knew that an inoperable tumor next to her backbone was serious trouble.

A major post-op infection added to her suffering and the general misery, and with a few days off for Thanksgiving, I flew to Chicago to stay with her in the hospital and give my father a break. In times of catastrophe we fall back on what we know. The family academic, I know reading and research. I bought some books about alternative treatment and nutrition protocols for cancer and read them on the plane. I learned enough in a few hours to be appalled at what the hospital kitchen gave a cancer patient for Thanksgiving dinner and to bring her organic yoghurt with love cultures to replace the good bacteria that her superantibiotics destroyed. When I pulled out some yoghurt during a visit from the hospital’s infection control specialist and explained why, he looked a little startled, as if I wasn’t supposed to know anything about infections or antibiotics or the breaking of the surgical field.

Meanwhile, my father took her records to the University of Chicago; maybe they had some cutting edge technological miracle to offer. The move miffed my mother’s oncologist. He sense that his judgment shouldn’t be supplemented or questioned, that my mother was somehow his property, miffed me. What the doctors at the eminent U of C Medical Center could offer was a grotesque operation that would hollow out the lower half of her abdomen and leave her in a wheelchair with even more tubes and bags. She would be a literal bag lady, all sterile plastic and encased in steel. My mother rejected their futuristic medicine that seemed, well, medieval.

When I returned east the next week, I taught my classes on automatic pilot and cut my office hours to a minimum. My students hardly minded that I was only half there, and I decided not to think about what that might mean. I read everything I could get my hands on, some of it was quackery and junk. All of the people I talked to were kind and generous with their knowledge and experience, although some were a little woo woo for my comfort. But I was surprised by how much good research on cancer and nutrition was out there. You’d never know it talking to a conventional oncologist; in all the years of treating her none of my mother’s doctors had mentioned diet. I came up with a nutrition and supplement plan that corresponded to most of the more credible work I had read. It was not a program for the faint of hear or for the devotee of Domino’s pizza: an organic whole foods vegetarian diet supplemented with a little salmon. Lots of soy and garlic and greens. All very worthy, but lacking in the high fat and sugar than the standard American diet teaches us to associate with gastronomic pleasure, a lesson my mother had learned all too well. The supplement regimen was vast, and expensive (although cheap in comparison to chemo). It ranged from high doses of vitamin C and selenium to more exotic substances like Cat’s Claw and maitake mushrooms and germanium. Her insurance, of course, covered none of it. She took fistfuls of pills four times a day, nearly a hundred in all. Every Saturday night, after my mother went to sleep, my father sat down with all the bottles in front of him—they completely covered the kitchen table—and counted out a week’s worth of each and put them in little trays. Once his fingers grew quik and nimble, the task took two hours. He has an accounting degree but never became an accountant; bean counter, pill counter, we offered to buy him an eyeshade. In many ways it is easier to think of enduring all kinds of horrible treatments, treatments which will have an end, than to change permanently the bedrock habits of our lives. We are what we eat—not just in the sense that what we eat affects our health but that what we eat in many ways defines and constructs us socially and politically. The hardest part for Mom was the no-sugar rule. Like people, tumors love sugar and grow fat and happy on it, and she was the sort of person who, on opening a restaurant menu, looked first at the desserts. I found a recipe in a Moosewood cookbook for an apple cake—all whole what flour and sweetened with maple syrup, not much fat. It didn’t look like much, but it tasted remarkably good and seemed to palliate her craving for sweets. I knew she’s never bake it herself—whenever my father talked about buying a new house my mother said that she would only go through the trouble of moving if the house were kitchen-free—so I baked one for her once a month or so. It took most of a morning to make, and between organic ingredients and overnight delivery the little cake cost nearly a week’s pocket money, but it seemed a small price to keep her from the temptations of tiramisu.

I give Mom credit for going along with such a drastic change in her eating and living. I do know that she sometimes departed from the script, “cheating” she called it as if this way of eating were an imposition and I the nutrition police. Like most of us, her taste for whole grains had been practically obliterated by fast and processed foods. She assumed that food-for-you meant bad-tasting, an attitude only exacerbated by the “Eat to live, don’t live to eat” school of nutrition.

A great believer in “mind over body,” my mother was convinced that she would get well. She had once injured herself so severely while working out that my father had to carry her into a doctor’s office. Diagnosis: a hernia; prescription: immediate surgery. “What if I refuse?” she asked. “The tear will get bigger and your internal organs will end up outside the muscles rather than in,” was the frightful prediction. “Let me think about it,” my mother said. She had my father lift her up, bring her home and ensconce her on the couch in the family room. We thought she was nuts. Settled there, she pent a few days picturing her muscle tissues knitting themselves back together. She was walking again in a week. We have always known she was stubborn, but after that feat, no one doubted the power of her will. So this time she did visualization exercises every day and cultivated the positive “love yourself” attitude that all the feel-good cancer books recommend. I lamented the dualism of her paradigm, which seemed to encourage thinking about the ailing body as a hostile foreign country that must be subdued and conquered, but how can a cancer patient not on some level feel that the body has betrayed and must be made obedient again> And what woman who grows up in this culture manages to escape seeing her body, with its flesh and curves, as the enemy? Like her, I decided to concentrate on the positive and feel lucky that at least she was active and confident of her recovery even if I, her overeducated daughter, didn’t like her metaphor.

These methods of building the immune system take time. After about four months, though, her pain was nearly gone. At five months, her CEA test registered 0.1; 5.0 usually signals remission. Not bad for someone the white coats had written off. Relief, reprieve, we celebrated again.

The oncologist called her his “miracle patient.”

He must have meant this literally because he never evinced the least bit of interest in her regimen. Perhaps his was not an inquiring mind. Perhaps he thought that no effort counted unless he directed it. I once saw a surgeon on a television talk show, a grieving and chastened man whose wife, suffering from severe post-partum depression, had committed suicide. He had no ideas that the condition could have cause such catastrophe. “I was a surgeon,” he said, “I figured that if I didn’t know about something it wasn’t worth knowing about. I don’t want to generalize here, but his tome seemed to imply that this is just how most doctors think). The oncologist’s lack of interest worried me, and I urged my parents to find another doctor. I gave them the name of an oncologist who uses both conventional and alternative, especially nutritional, approaches in treating cancer. My mother saw him a few times but didn’t really like him and besides, she was weary of doctors. When he mentioned special, and expensive, tests and analyses that their insurance wouldn’t cover, my father began to feel suspicious. They returned to the man-without-curiosity.

Just as things were going, in his own words, miraculously well, the oncologist suggested that my mother try some chemotherapy. “I’d give it a 15% chance of wiping it out entirely,” he said. I was appalled when my parents told me, and sick and panicked at the thought of it. I reminded them that chemo destroys the immune system, that to take it would put all the gains at risk. But I knew that I couldn’t lobby too loudly. What if she felt coerced by me, skipped the drugs and died anyway? Besides, I told myself, everyone ahs the right to make decisions about such grave matters without pressure.

My mother was pathologically impatient. Her father abandoned the family when she was five. He left his four daughters with a woman who repeatedly threatened to commit suicide and then left the house for hours. A childhood filled with extraordinarily stressful waiting. Once, when I was a child and too young to understand this, she became incredibly agitated and then disintegrated into tears while waiting for the washing machine repairman. Patience, in matters large and small, came hard. She readily agreed to the chemo—the doctor had recommended it and he should know, after all. And if the cancer was well and truly gone, she could go back to Lou Malnattis pizza and tiramisu.

The doctor prescribed a course of 5FU. I later learned that people in the cancer business sometimes refer to this drug as “Five Feet Under.” I’m not sure if the phrase implies that the drug is so toxic that it can make you feel like you’re dying or that the drug is so ineffective that it won’t save you from dying or, most likely, that the drug will kill you more often than not. (I often wonder of the obituaries’ “complications from cancer” refers primarily to death-by-chemo.) The drug trashed her immune system, as I feared. She lost her appetite and was too sick to take the supplements. The tumor came roaring back—her CEA numbers climbed to 15—and sicker than ever, the oncologist shrugged his shoulders and said “actually, I’ve never seen it work in a case like this, but it was worth the chance.”

When I tell this story people sometimes say that surely this physician should be sued for something. For what, I wonder, being unable to let a good thing alone? I paraphrase for them a passage from Harrison’s principles of Internal Medicine, a weighty two-volume canonical text of thousands of pages. I quote here from the third page of the 14th edition: “in those cases which do not lend themselves to easy solutions or for which no effective treatment is available, a feeling on the part of the patient that the physician is doing all that is possible is one of the most important therapeutic measures that can be provided.”

The longer you linger over this passage the more stunning it becomes. It so casually licenses overtreatment. And there’s the breathtaking arrogance of it. The physician, not the patient, is and always must be the active and powerful agent in the drama of illness. Finally, it seems to acknowledge the value of the placebo effect, which in other circumstances conventional medicine has roundly scorned. (Vitamins and herbs to treat cancer? Pure quackery. The placebo effect.) Here scientific medicine endorses the very “superstition” from which it claimed to save us. If all else fails, try the power of the white coat and the pointless treatment that you know won’t work.

Perhaps cancer invites overtreatment and pointless treatment more than other illnesses. We have been engages in a “war on cancer” since the Nixon administration. We die of cancer “after a long battle.” War licenses extreme and aggressive and often hasty action. In times of war we are less critical of leaders and generals, more willing to go along with what they say must be done, feel greater pressure to fall in with the party line. We are more likely, in our fear, to mistake propaganda for sound and credible argument, the horrific for the reasonable. We let profiteers masquerade as patriots. We tell ourselves that we can’t really concern ourselves about collateral damage.

And of course in a few months she died. An ugly and painful and excruciating death. The tumor pushed mercilessly against her sciatic nerve, and all the morphine—in pills, patches and IV pouches—hardly took the edge off. She weighed less than a hundred pounds by then, but enough Ativan to down an elephant rarely produced relaxation and the relief of sleep. Perhaps because she was a goner, the oncologist stopped returning my father’s hone calls; Dad was left to guess at how much morphine he could give his wife of nearly fifty years without killing her. Finally the tumor grew so large that the blood in her legs could barely return to her chest to be pumped again. They swelled to three times their normal size and dripped so much fluid that she was constantly soaked—weeping they call it. When you pressed your fingers into those bid boggy legs the indentations remained. He toes began to blacken. She died by inches.

Cancer is insidious, you can think it’s dead, and like a vampire it returns to renew the parasitic feasting that leaves the patient bereft of flesh. I don’t know for certain that Mom would be alive today if she had refused that chemotherapy. I do know that she died sooner because of it. And I don’t know if the seven weeks of radiation caught those stray cells, but it certainly didn’t keep her safe from anything. A few weeks after my mother’s death, my father began to wonder why we hadn’t been told at the time of her first surgery that the radiation treatments would use up he lifetime allowance. The trained accountant became suspicious. “Did she really need all that radiation, or was that more about keeping the machines, which must be paid for, busy and billing?” he asked one of the people at the hospital who had treated Mom. He got an awkward smile and shrug in response.

I’ve become interested in the private language of oncology. In the lingo of the lesion, when a patient stops responding to treatment, he of she is “refractory.” (Doctors also call the tumor “refractory” when it stops responding to drugs, but this rhetorical equation of patient and disease is another essay). When chemotherapy fails to put the patient in remission, he or she has “failed chemotherapy.” Language so hostile to the patient, so protective of the physician’s authority, language so eager to blame the patient an exonerate medicine. What do they say when the treatment kills the patient? “Collateral damage?”
Posted with permission

Study Questions

1. What factors deepened the family’s distrust of the medical establishment?

2. Review the procedure for breaking bad news. What do you think of the following comment from Pope’s essay? “He brought them to a small windowless room, the kind of room that is supposed to ensure privacy and confidentiality but is really about shielding other waiting families from someone else’s bad luck.” What does this say about the patient’s perspective? How does this shed light on the turn to alternative medicine as a source of healing?

3. How does the self-image of the medical profession contribute to the polarization between patient and professionals? Did the doctor’s response to her “miracle cure” surprise you? How do you think you would have responded in this situation?

4. When the author’s mother develops an inoperable spinal tumor and cannot undergo radiation, she drastically changes her diet, starts a vitamin supplementation plan, and practices visualization exercises. Why do you think she was successful with this alternative treatment? How much of her success is related to feeling empowered and taking control of her own health? What cultural beliefs do you have about medicine that might dictate your answer? Or do you have any evidence that might explain your answer?

5. As healthcare providers, we have a strong drive to do “everything we can” to prolong life; what is your response to the quotation from Harrison’s Principles of Internal Medicine? Identify a concrete example of a situation in which “therapeutic measures” such as this story describes are more therapeutic to the medical team than to the patient?