How Doctors Think (31 page)

It is unlikely that in the near future personal financial gain will be extracted from certain clinical decisions. Several spine surgeons told me they would not participate in a trial comparing simple discectomy with fusion surgery, because fusion surgery is a main source of their income and because they are convinced of its value. These were the obstacles that Dr. James Weinstein, at Dartmouth Medical School, faced in trying to launch a national study. Weinstein, an orthopedic surgeon and a leading expert in back pain, told me that the way doctors approach treatment of chronic lumbar complaints needs radical improvement. Patients, he said, must be given unbiased information about what is known and not known about back pain and the various ways of treating it. Instead of informed consent, Weinstein advocates what is called informed choice—a comprehensive understanding of all the options and their possible risks and benefits.

Informed choice means, in part, learning how different doctors think about a particular medical problem and how science, tradition, financial incentives, and personal bias mold that thinking. There is no single source for all of this information about each disorder, so a patient and family should ask the doctor whether a proposed treatment is standard or whether different specialists recommend different approaches, and why. Laypeople also should inquire about how time-tested a new treatment is. Karen Delgado is a model in this regard. She infuses common sense into the scientific results from clinical trials; she is unafraid to question custom and tradition; she sees medicine as a calling and not a business; and she avoids financial temptations that could subtly guide her practice. Patients often come to her after reading newspaper articles or watching TV reports that feature physicians' testimonials about results from a research study or an alleged breakthrough. "That may be what they believe," Delgado tells her patients, "but now let's talk about what we know and what we don't know."

Chapter 10

In Service of the Soul

M
EMORIAL HOSPITAL
is a brown brick building that rises twenty-one stories and occupies the entire block between 67th and 68th streets on York Avenue, on the east side of Manhattan. Connected to the hospital is the Sloan-Kettering Institute, a warren of steel-and-glass structures that house research laboratories. In 2005, more than 21,000 patients were admitted to the hospital, and there were 445,000 outpatient visits; nearly 16,000 surgeries were performed and 110,000 radiation treatments administered. Each day, some 9,000 physicians, nurses, psychologists, social workers, laboratory technologists, and support personnel arrive to care for people with cancer.

This massive enterprise can be traced back to the plight of a single young woman, Elizabeth Dashiell, who fell ill during the summer of 1890. In his wonderful book
A Commotion in the Blood,
Stephen S. Hall recounts her case. Her problem began when she took a train trip across the United States. During the journey, her hand was caught between two seats of a Pullman car. It soon became swollen and painful; she assumed it was infected. The pain persisted after she returned home to New Jersey. In September, she consulted William Coley, a twenty-eight-year-old surgeon in private practice in New York City.

Dr. Coley was uncertain about the diagnosis. Still hoping it was an infection, he made a small incision below the joint that connects the little finger to the back of the hand. But only a few drops of pus fell from the lanced area. Over the next three months, Coley saw Dashiell regularly, determined to diagnose her underlying problem and relieve her growing pain. After consulting with several senior surgeons at New York Hospital, he decided that he needed to probe the swollen tissues more deeply.

In October 1890, Dashiell underwent surgery. Coley scraped firm, gristle-like material off her tendons and bones. But the procedure failed to yield an answer and gave her only temporary respite from the pain. In early November, Coley performed a biopsy and finally made a diagnosis: sarcoma. A sarcoma is a cancer of the connective tissue, developing from bone, tendon, or muscle. Coley desperately wanted to save Dashiell and attempted to do so by amputating the young woman's arm just below the elbow. But it was too late. Over the ensuing months, the sarcoma spread to her face, breasts, and abdomen. Her pain became so severe that only high doses of morphine could control it. Elizabeth Dashiell died at home at 7
A.M.
on January 23, 1891. Dr. Coley was at her bedside.

Several months later, he presented Dashiell's case to his surgical colleagues at the New York Academy of Medicine. He concluded his presentation with these remarks: "A disease that ... can attack a person in perfect health, in the full vigor of early maturity, and in some insidious, mysterious way, within a few months, destroy life, is surely a subject important enough to demand our best thought and continued study."

Dashiell would have been just another young woman tragically dying with an incurable cancer, except that one of her closest friends was John D. Rockefeller, Jr., the only son of the founder of Standard Oil. Rockefeller had met Dashiell through her older brother, and he grew so fond of her that he came to think of Elizabeth as his adopted sister. Rockefeller was shocked by Dashiell's death. Several years later, he continued a program of philanthropy that his family has sustained for generations and that resulted in the founding of Memorial Hospital.

Dr. Stephen Nimer is a physician at Memorial who cares for his patients in the tradition of William Coley, devoting to them his "best thought and continued study." On a recent spring morning, Dr. Nimer walked down the corridor of the eleventh floor of the hospital and entered a conference room to begin his teaching rounds. He is a hematologist who specializes in leukemia, lymphoma, and other malignant disorders of the bone marrow. Nimer stands just shy of six feet and has a prominent widow's peak and an oval face that frames his rimless glasses. He likes to joke that he is one of the few MIT graduates who went there to play hockey.

That day, Nimer was dressed in a spotless white coat, starched blue shirt, and perfectly knotted silk tie. He noted with satisfaction that he was precisely on time. The hematology fellow and the senior resident on the clinical service were waiting. There was a new case for the fellow to present, and after exchanging pleasantries, he began: "Max Bornstein is a fifty-nine-year-old gentleman who had a large-cell lymphoma successfully treated two years ago and now has MDS." MDS stands for myelodysplastic syndrome—a conglomerate term of Greek roots that signifies injury to the primitive cells of the bone marrow, the stem cells; the injured stem cells grow in a stunted, disorderly way and fail to produce enough blood. In Bornstein's case, it was the chemotherapy that cured his lymphoma two years before that had injured the marrow stem cells. "His white blood cell count is 1,900, his platelets 74,000, and his hemoglobin 9.8," the fellow said. "I calculated all of his parameters, including his marrow findings. His calculated score puts him at intermediate-II risk on the IPSS. Based on his score, I would just transfuse him and not do anything beyond such supportive measures."

Nimer's face tightened. "I'm not interested in where he scores on the International Prognostic Scoring System," he said to the fellow.

"Well, we could use a different scoring system, based on the World Health Organization classification—"

"You are missing the point," Nimer interrupted. It was a point that was all too often missed, and one that Nimer sees as essential in training the next generation of hematologists.

"But he has IPSS intermediate-risk-II disease," the fellow said.

"Wait a minute," Nimer said. He turned to the resident and asked, "Did the fellow just say that this man had IPSS interme-diate-risk-II disease?" The resident looked confused. "Yes," he answered.

"But what's wrong with that?" Nimer shot back, then turned to the fellow. "Did you really mean to say that?"

"Well, why not?" the fellow replied.

"Do you agree that the patient has MDS due to prior chemotherapy?" Nimer asked, beginning to lead the fellow down a different path.

"Yes."

"Then you should know that the IPSS classification excludes patients who have had prior therapy as a cause of their MDS." Nimer paused. "Okay. That's my first point. But more importantly, do you need to know the IPSS classification in order to take care of
any
patient?"

"Well, we calculate the IPSS all the time," the fellow said.

"Yes, that's true. But last week this man's white blood cell count was 3,200, and in seven days it fell to 1,900. His platelets fell from 105,000 to 74,000. So I don't really care about the IPSS at this point. I know this is a man who is headed for big trouble, a man who's rapidly deteriorating and needs treatment right away. Not simple supportive measures like transfusion. Treatment
right away.
"

As Nimer later explained to me, he routinely encounters young physicians who relinquish their own thinking and instead look to classification schemes and algorithms to think for them. In this instance, the fellow was fitting Mr. Bornstein onto a grid based on his blood counts and bone marrow picture. When Nimer challenged him, the fellow's response was to invoke another classification scheme. "It's a static way of looking at people," Nimer said. "Strictly speaking, it's correct. But clinically speaking, it's wrong." The proliferation of these boilerplate schemes, Nimer believes, has caused doctors to become so wedded to generic profiles that they ignore the individual characteristics of the patient. "This man doesn't come out looking bad on this classification system," Nimer continued, which is why the fellow suggested supportive measures rather than aggressive treatment. But, in fact, viewing Bornstein's case in this way was an illusion, an artifact of the schema, because the classification system fails to take into account the course of the person's disease, the rate of fall in his blood counts. Based on his trajectory, Bornstein's blood counts soon would plummet to perilous levels; he likely would die from an infection or hemorrhage before any treatment could take effect.

Scoring schemes are proliferating in all branches of medicine. They can be useful ways of organizing clinical data, providing a structure to assess complex and heterogeneous disorders. But they are also very seductive. It is not always clear when to treat a person with highly toxic and potentially lethal chemotherapy; in this instance, Nimer recommended a bone marrow transplant, arguably the most drastic therapy available in hematology and oncology, a therapy that can cure or kill. Deciding whether a patient needs a marrow transplant, and when to perform it, is a profound responsibility. Fitting a patient into a spot on a grid that doesn't dictate a harsh therapy, like a marrow transplant, comes as a relief for the physician as well as the patient. But it would be a grave mistake. Relying on schemas also suits the hectic pace of today's clinical care. Bornstein was just one of dozens of patients the fellow would see in the course of a week. Algorithms and grids gave him shortcuts around the onerous process of assessing each of these dozens of complex cases. Nimer wanted to push him toward a difficult but necessary type of thinking about every patient.

In addition to his work with patients, Nimer oversees a large research program studying malignant blood diseases like lymphoma and leukemia. "I believe that my thinking in the clinic is helped by having a laboratory. If you do an experiment two times and you don't get results, then it doesn't make sense to do it the same way a third time. You have to ask yourself: What am I missing? How should I do it differently the next time? It is the same iterative process in the clinic. If you are taking care of someone and he is not getting better, then you have to think of a new way to treat him, not just keep giving him the same therapy. You also have to wonder whether you are missing something."

This seemingly obvious set of statements is actually a profound realization, because it is much easier both psychologically and logistically for a doctor to keep treating a serious disease with a familiar therapy even when the disease is not responding. In hematology and oncology, diseases often are difficult to cure. Specialists sometimes say privately, "It's a bad disease," meaning that it is complex and often resistant to textbook therapies. But repeatedly affirming how severe a certain type of lymphoma usually is, how aggressive a certain leukemia can be, has a subtle psychological effect. The mantra "It's a bad disease" can shift the burden of thinking off the specialist. Instead of struggling to come at the malady from a different angle, seeking its vulnerable point by adding other drugs or customizing a regimen, the physician, in essence, surrenders. This surrender is not conscious, but an astute patient can pick up on the fact that his doctor is sticking with the same treatment, not taking the risk of devising a novel, individual approach when the condition is not improving, because "it's a bad disease."

When I was a fellow in training at UCLA, some of the senior attending physicians invoked this mantra, and I found myself repeating it with a guilty sense of relief. It acted as a buffer against the fear of failure, a fear that even an accomplished physician, which I was not, carries within himself. It is healthy and beneficial to invest your ego in healing your patient's disease. But when your ego overshadows that goal, there lies danger.

"I tell patients that I am going to do everything possible to help them," Nimer said, "and that means that I am also setting myself up to fail." Failure is something that physicians deeply dislike. This became apparent to me when I researched outcomes of surgery for prostate cancer. Different surgeons reported a wide range of postoperative impotence and incontinence. Although the individual skill of the surgeon may account for some of this variation, as I probed some more it appeared to be largely a function of which patients the surgeon chose to operate on. Some surgeons turned down difficult cases involving large, aggressive cancers. Others refused to operate on patients with serious medical problems like diabetes, even though surgery was their best option to eradicate the cancer. Such patients are more prone to nerve damage, and thus to impotence.