How Doctors Think (33 page)

To further illustrate this point, Nimer told me about Vincent Rivera, a man in his seventies from Long Island whose wife had advanced multiple sclerosis and was in a wheelchair. Rivera was diagnosed by his hematologist with myelodysplasia, or MDS. Again, this is an abnormality of the bone marrow that hinders production of white blood cells, red blood cells, and platelets, causing anemia, susceptibility to infection, and bleeding. When Nimer saw Rivera, his white blood cell count was under 500 and his platelet count was 3,000, both severely low. His hematologist was transfusing him every week. Nimer reviewed the bone marrow biopsy and saw that Rivera was on the verge of transforming from MDS to florid acute leukemia. "I talked to him about different intensive treatments, and he kept returning to the fact that he enjoyed going duck hunting on Long Island and that he was the one who cared for his wife at home." Rivera's implicit message was that Nimer should find a therapy that would keep him as an outpatient and allow him to continue to look after his wife.

"I told him about 5-azacytidine," Nimer recalled—a chemotherapy drug being tested for MDS that required a special release from the National Cancer Institute. "If you think that's best, then let's go ahead with that," Rivera said. But after several treatments with 5-azacytidine, there was no improvement in his blood cell counts, and his marrow still showed the brewing leukemia. Next Nimer suggested antithymocyte globulin, or ATG, an antibody preparation that works in part by altering the immune system. ATG also proved ineffective. "He kept telling me stories about his wife, what they talked about in the evenings, the movies they rented," Nimer said. When Nimer again raised the possibility of combination chemotherapy for the brewing leukemia, he could see the reluctance in Rivera's eyes.

"I kept thinking about what to do for him," he said, "and I decided to try cyclosporine, even though the medical literature is lousy with respect to its effects in MDS." Cyclosporine could be administered to an outpatient. Within several weeks of treatment, Rivera's blood cell counts started to improve. His platelets rose to 30,000 and reached a peak of 80,000; his white blood cell count rose to over 1,000, and his anemia improved so much that he no longer needed transfusions. "Mr. Rivera decided to sell his house on Long Island," Nimer told me, "so he had enough money to move with his wife into an assisted-living facility."

For nearly nine months, on a drug that had scant possibility of working in the long run, Vincent Rivera did not require admission to the hospital and felt good. During those nine months, Nimer got repeated phone calls from his children. "They kept pressing me to bring him into the hospital, to give him chemotherapy, knowing that his disease was transforming into acute leukemia. I explained that I had arrived at this path with their father and that we were doing the best we could in terms of what made sense to him." Ultimately the leukemia proliferated, and Rivera's platelets sharply fell. He died of an internal hemorrhage. "I received the most beautiful letter from his children," Nimer told me. "They finally understood why I didn't give intensive treatment in the hospital, that those nine months meant so much to their parents."

Dr. Jeffrey Tepler is a hematologist and oncologist in private practice at New York–Presbyterian Hospital, his office a few blocks north of Dr. Nimer's. Tepler is a thin, compact man with a fringe of hair and a soft voice. After more than two decades of practicing hematology/oncology, he has seen hundreds, if not thousands, of people with maladies like breast cancer, lymphoma, and prostate cancer. As years pass, physicians derive gratification not only from the challenge of solving difficult cases, but also from trying to decipher the character of their patients. Tepler's interest in fully understanding his patients grew from his love of literature. Tepler counts among his favorite authors John Updike and John Cheever, Philip Roth and Saul Bellow, all of whom probe the conflicts and needs of modern-day men and women.

"Primarily, what I love doing is doctoring and talking to patients," Tepler told me. "I think the reason a doctor goes into oncology—or
should
go into oncology—is because he or she can form a special relationship with patients, a kind of relationship that is unique and not that common in other specialties, because of the nature of the diseases that we deal with.

"I don't want to sound corny," he said, "but I feel this desperate urge to always do the right thing. People's lives are at stake." This did not strike me as trite, because I had referred Naomi Freylich, a retired scholar, to him. Years before, a hematologist had fixed the label of "chronic lymphocytic leukemia" onto Freylich's case, and this diagnosis was passed from specialist to specialist; no doctor looked critically at the clinical behavior of her blood disease or repeated the analysis of the abnormal cells in her circulation.

Her family had called me when a hematologist in the city told them that Naomi would soon die, because all appropriate therapies for chronic lymphocytic leukemia had been exhausted. I suggested that she seek other opinions, with a specialist at Memorial Hospital and with Tepler. Both doctors discovered that the initial diagnosis was wrong. It was not this form of leukemia but rather an unusual type of lymphoma that was readily improved with Rituxan, an antibody treatment that targets the malignant lymphocytes. Naomi told me she appreciated the consultation at Memorial Hospital but felt more comfortable with Tepler's understated demeanor. "He's very calm, not rushed in his work," she observed. She received Rituxan, lived for two years, and completed several major literary research projects. She then developed acute leukemia from the chemotherapy for the misdiagnosis years before, and died.

People with a sharp, aggressive side to their character gravitate to doctors who come on strong, believing that aggressive traits result in success. Tepler, as Naomi Freylich found, is soft-spoken and deliberate, so that kind of person is most likely to feel connected with him. "For sure, surgeons and internists and others who commonly refer patients to me will send people who fit with my style and personality," Tepler said. "I am referred people when a doctor thinks we will be simpatico." I had never thought much about the consequences of this aspect of medicine. A physician's demeanor and personality often mirror his type of thinking, so there is the potential for a self-fulfilling prophecy: particular character types among patients will be channeled to similar character types among doctors, so certain modes of clinical thinking and clinical action will be applied to patients based on their character.

As a general hematologist and oncologist, Jeffrey Tepler sees a broad mix of cases in the course of a day. This means that he must work hard to stay abreast of the trends and discoveries in a variety of different diseases. "I really enjoy being that kind of doctor," Tepler said. "At this stage of my career, I've seen so many different disorders. And I love to think broadly." Last summer, Tepler saw a patient who had been on vacation in Nantucket. She had fever, anemia, and an enlarged spleen. Many different diseases can cause this constellation of findings. The evaluation by the infectious disease specialist had included a search for babesiosis, a parasitic disease that comes from deer ticks and is clustered in coastal areas and offshore islands like Nantucket. "The report from the laboratory said that thick and thin smears were done and they were negative for babesia," Tepler told me. But he takes nothing for granted. So he made his own smears in his office and looked at them under his own microscope. "And there it was—one single babesia form on the smear. It was easy to see why it had been missed. I was so excited to find it." The patient was successfully treated and recovered fully.

"I always go back and read the recent literature with almost every patient who has a nuanced clinical case, a variation of a diagnosis," Tepler said. "I try hard to stay on top of my game. So much of the joy is reading the medical literature and then judging what in a paper informs how you care for an individual." This "joy" often leads Tepler to linger in his office reading medical journals and textbooks well into the evening. "It's hard to think deeply about patients at the moment when you are seeing them. You need some quiet time to reflect and formulate a cogent opinion." For that reason, he often tells patients that he wants to think more about their cases rather than immediately offering a treatment plan. He routinely leaves his office around eight-thirty or nine at night, devoting the end of the day to thinking.

"While I really love seeing people with these different types of problems," Tepler said, "if I believe that the patient would be better served elsewhere, then I will send him to another doctor." This is another mark of a caring physician who, despite his expertise, knows his limits and wants to do what is best for his patients.

Many of the patients referred to Tepler have very advanced cancer. "Sometimes I think that one of the most important things I do for patients is to spare them the misery of futile treatment," he said. Occasionally people with advanced cancers are "flogged," a distasteful term used in clinical medicine to describe continued toxic therapy with no real point. There are some oncologists who seem to believe that it's wrong for someone to die without receiving every possible drug. Tepler is not one of them. "People really wouldn't want to be treated this way if they truly understood what the likelihood of benefit was," he said. Patients do not always understand that, even when a caring doctor tries to explain it clearly.

"When patients want something that I feel is wrong, I am insistent," Tepler told me. "I tell them that it's wrong." He refuses to humor someone if he thinks the request can cause serious harm. This issue often comes up in the context of a cancer that can be controlled reasonably well but cannot be eradicated—cannot be truly cured. Here Tepler's interest in character comes into play. "Patients want to be cured, and that's understandable," he said, "but then some people demand extreme therapy, or combinations of chemotherapy, when a single agent is just as good and less toxic." He recalled Alex Woo, a designer who had stable metastases from colon cancer. The tumors hadn't grown for three years with the treatment Tepler was giving. "But Alex just couldn't live with the knowledge that he was coexisting with his cancer. He wanted it gone, just gone from his life. But I could not
not
tell him what I was really thinking—that pursuing more extreme therapy would likely hurt him." Woo left Tepler for another doctor.

Another of Tepler's patients, Diane Waters, had breast cancer and a single metastasis to her liver. He had cared for her for more than eight years. Diane's cancer exhibited the HER2 protein on its surface, so he was able to effectively control it using Herceptin, an antibody that targets the surface protein, in conjunction with various chemotherapy agents. "She consulted many, many doctors in New York," he said. "And then she found a radiologist at another center who told her that he could treat the metastasis in her liver through chemoembolization." The radiologist recommended delivering chemotherapy directly via a catheter into the tumor in her liver and said he would then try to choke off the blood supply—chemoembolization. Tepler had advised against this, explaining that metastatic breast cancer is a systemic disease, that there were microscopic deposits beyond the single tumor in her liver; moreover, she had no symptoms from her solitary metastasis—it was being well controlled by the treatment she was receiving. "She almost died from the chemoembolization," Tepler told me. "The left lobe of her liver completely broke down, and she accumulated liters of fluid in her chest. She was in the ICU for weeks."

As he predicted, the disease returned in the liver. "I am usually successful in convincing people, but in this instance I wasn't." But, unlike Alex Woo, Diane Waters returned to him for care. "I didn't make her feel bad about her decision," he said. To her, he said, "You did what you thought you had to do, and you are lucky that you survived." Tepler worked with her on whatever new treatment was then most appropriate; currently her breast cancer is being well controlled with chemotherapy.

Sometimes catastrophic complications of desperate treatments, like the one Diane Waters received, lead to lawsuits. Looming behind every high-risk decision in today's medicine is the specter of litigation. Tepler has found himself in the uncomfortable position of disagreeing with a doctor who recommended an intervention because of concerns about lawsuits.

He told me about Rachel Swanson, a middle-aged woman with ovarian cancer whose disease was clinically well controlled on chemotherapy; her tumors were relatively small and had not grown significantly for a long time. During a yearly visit to her internist, she was referred to a gastroenterologist for a routine colonoscopy. The gastroenterologist noted a metastasis that had deposited on the surface of the colon. "Rachel had no symptoms whatsoever from this," Tepler said. "We usually don't perform colonoscopies on women with known metastatic ovarian cancer unless they have bleeding or some other problem. This was really an incidental finding. There was no reason to think, given that her tumor was well controlled, that it would perforate the bowel." Nonetheless, the gastroenterologist referred her to a surgeon who advised removing the metastasis and adjoining segment of colon. Once this recommendation was made, subsequent consultants were reluctant to challenge it, because, if on the off chance that in the future it did cause a problem, particularly perforation of the bowel, then they could be sued. "I can understand their thinking," Tepler said, "but you can't be guided by fear of lawsuits. You can't practice defensive medicine like this, particularly when it involves subjecting a woman to major surgery."

Tepler continued to advise Mrs. Swanson against the operation, but she was persuaded by the surgeon that it was important to remove the metastasis even though she'd had no symptoms from it. Again, as Tepler pointed out, it is very hard for people to live with the knowledge that tumors in their body could pose a future threat, despite the fact that those tumors are being controlled by chemotherapy. "Rachel wanted the surgery," Tepler said, "and this was communicated to the doctors that she saw. In fact, one excellent gynecological surgeon saw her initially and told me that he agreed with me, that there was no real basis for an operation in her case, but then he changed his mind—probably to satisfy her want." Although the bowel was successfully removed with the metastasis, the surgeon noted several other tumors in the abdomen that could not be excised. Tepler had explained to Mrs. Swanson that regular cycles of chemotherapy that were keeping her ovarian cancer in check would have to be delayed by the operation. And, alas, "her disease just exploded," he said. "She was in terrible pain from the bowel resection, and then the ovarian cancer started to spread aggressively.