The Good Doctor (7 page)

Meanwhile, some women with breast cancer were in almost full-fledged revolt. For decades, surgeons had done biopsies of breast lumps while women were under anesthesia. If the biopsies were positive, the surgeons believed immediate radical mastectomies were indicated. Rather than awakening their patients to obtain consent, they preferred to forge ahead with the procedure, although if a woman was married, the surgeon would ask the husband’s permission. When a woman awoke from this operation, she commonly reached for her chest to see whether or not her breast was still there, an experience that many described as thoroughly traumatic. In the early 1970s, with the support of an iconoclastic surgeon from the Cleveland Clinic, George Crile Jr., a group of activist women began to refuse both this combination procedure and the reflexive use of such a mutilating radical operation for small, localized breast cancers. The best known of these women was Rose Kushner, a Washington, DC, journalist whose story I was privileged to tell in
The Breast Cancer Wars
, my book on the history of breast cancer. Confronted by this feminist initiative, most breast surgeons initially became more—not less—paternalistic, and at times patronizing. For example, in 1971, another journalist, Babette Rosmond, got her surgeon to agree to do just the biopsy of a breast lump. But when it came back positive and she asked for a few weeks to consider her options rather than immediately undergoing a radical mastectomy, he called her “a silly and stubborn woman” and made the ridiculous claim that she might be dead in a few weeks without the procedure.

By the mid-1970s, historians and other authors began to portray the medical profession and the history of medicine in an unflattering light.
Medical Nemesis
, by the Austrian philosopher Ivan Illich, argued that doctors did far more harm than good. Patients, he wrote, were “defenseless” against “the damage that doctors inflict with the intent of curing.” In
The Birth of the Clinic
, French historian Michel Foucault saw paternalism as a cloak that gave physicians far too much power and, paradoxically, also distanced them from patients.

Neither a breast surgeon nor a gynecologist, my father was less likely to encounter these new activist patients. But issues of patients’ rights were slowly creeping into his world, and at times, his notes contained a glimmer of the coming revolution. For example, one of his patients developed congestive heart failure due to endocarditis but, against the advice of my dad and a cardiologist, was able to successfully maintain a very vigorous exercise program. “We have a situation,” my father wrote, “where the patient, either out of ignorance, or fear, teaches the consultant something and challenges some traditional concepts.” Cases like this reminded my dad that even when he relied on his best medical judgment, he was not necessarily right.

More interesting was a case in which an orthopedic surgeon disregarded my father’s advice regarding an infected elbow without telling the patient what had been recommended. My dad, in contrast to the surgeon, thought that the elbow needed to be opened up and drained. My father later wrote that he did not know where his “legal, moral and ethical duty would reside” in this circumstance, but that “ideally,” he would “ignore the surgeon and directly tell the patient what I believe that the proper treatment should be and recommend that she seek this from some other source.” In this instance, at least, the etiquette of not stepping on his colleague’s toes won out over the patient’s right to know my dad’s contrary opinion. He did not go behind the orthopedist’s back and talk to the patient. But the decision clearly made him uncomfortable.

Coincidentally, twenty years later, when running a session on bioethical dilemmas, I heard a very similar case, one in which a neurosurgeon was insisting on inserting a drain into the head of a boy despite the fact that the radiologist had told the house staff that it was not needed. When asked whether I thought the younger doctors had an ethical obligation to go over the senior surgeon’s head and inform the boy’s parents about this disagreement, my answer was an unequivocal yes. In an era of patient autonomy, they simply had the right to know. One can sense my father struggling here to incorporate new ethical norms into a very powerful and familiar style of medicine that he had long believed was best. It was a difficult task.

The tension between doctors’ prerogatives and patients’ rights came to a head, most commonly, in questions of medical error. Traditionally, hospitals had dealt with these problems internally, either informally among the involved physicians or at morbidity and mortality conferences. Although mistakes might be admitted during such reviews with the goal of making sure they did not happen again, any acknowledgments of guilt were kept secret from patients, families, and even uninvolved coworkers. The fear of lawsuits was simply too overwhelming. Thus, my father often used errors he had witnessed to provide himself and his colleagues with important lessons for the future, such as “It’s not necessarily gangrene just because there is some gas in the tissues” and “You can’t use a reduced dosage of Loridine in patients who have renal dysfunction.” What to do about the problem of medical errors more broadly was not addressed. In one particularly disturbing case, the father of a young man with a possible brain abscess kept interfering with the efforts of my dad and the other doctors to obtain a diagnostic arteriogram because the test was invasive and involved the injection of dye. As the negotiations persisted, the patient suddenly became comatose: he did have an abscess and it had ruptured, a true medical emergency that might have been avoided. Fortunately, the man survived. Not doing what was best for his patient, my father concluded, had been a huge mistake. “It will never happen again as far as I’m concerned,” he wrote. But, as usual, no larger investigation into the case by the hospital hierarchy ensued.

My father’s reticence to go public extended to cases in which patients had been mismanaged prior to being admitted to the hospital. Some patients’ serious illnesses could be traced to questionable diagnostic or therapeutic choices made by previous clinicians. In one case, for example, my dad saw a woman for pneumonia and realized that none of the other doctors had found her very obviously enlarged neck lymph nodes, which indicated that the patient almost surely also had lung cancer. He likely never revealed that mistake to the patient. When a newborn baby developed a serious infection known as toxoplasmosis and my father was called in on the case very late, he experienced “true frustration.” Although he was “not certain that earlier treatment would have made a difference,” he believed that effective therapy had been available, “and it might have made the difference between a child totally retarded and institutionalized and perhaps a child who could have lived a more normal existence.” Again, there is no suggestion in his journals that he ever said anything to the baby’s parents. My father thought that he could be a more effective consultant by educating his colleagues about their errors and reminding them when and why they should call him. But that is where it ended, at least well into the 1980s. A consultant, he wrote, had to be “extremely careful in what he says” to patients and families. Under the ethical codes of the era, the sanctity of the doctor-doctor relationship still took precedence.

But my father remained conflicted about this sort of silence and made some gestures that—if not open admissions of errors—acknowledged bad outcomes. In one case, a teenage boy had died of an extremely severe pneumonia that his pediatrician had not originally taken seriously. My dad, who described himself as “shaken by this case,” asked the referring physician if he might seek out the family and explain what had taken place. “I did this,” my father wrote, “and it was not a very pleasant task.” I suspect that, in addition to expressing his condolences, my dad focused on the medical aspects of the case. In another instance, he typed up a three-page single-spaced note for his own files about a boy who had died of severe liver disease after bouncing in and out of several hospitals. “Given the final diagnosis and a treatable disease, could we have expected to save this youngster?” he asked himself. “I think the answer is yes and no.” My father attended the several-hour autopsy but called the “cold and austere” autopsy room “chilling” and felt that he was the only person in attendance with any emotional connection to the case. There is no mention of a postmortem visit with the parents in this instance, but it was this type of complicated case that bioethicists would soon urge physicians to openly discuss with patients and their families.

Being a full-time academic meant that in addition to seeing infectious diseases consults at the Mount Sinai and neighboring hospitals, my father taught medical students and house officers and sat on various medical school and hospital administrative committees. He also regularly read up to twelve medical journals, both those devoted to his specialty and others meant for the larger medical community. Keeping up with the literature was essential for any practicing clinician, but particularly for the consultant, who was relied upon for the latest knowledge about new medications and recent scientific studies. Not knowing all such information would have been an abrogation of one’s duty. As was the case in the homes of many doctors of this era, our bookshelves were lined with volumes of certain medical journals that my dad had read and, at the end of each year, had bound. This information was also available at the medical school, but having a home library ever available for consultation was important. In the days before the Internet simplified researching the scientific literature, my father would rip out articles on interesting cases from various journals. When encountering a similar case at work, a lightbulb would go on and he would try to find the jagged pages he had stuck, most often, in a poorly labeled folder. At one point he wrote that some people were “incredulous” that he had no interest in golf, bridge, or other hobbies, but he nonetheless remained focused on increasing his medical knowledge, studying his profession.

My dad’s passion for medical research came through vividly in an anecdote I found in his journals about a national infectious diseases conference that he attended. A speaker there had presented exciting data on a new modality, monoclonal antibodies, that held enormous potential for the treatment of infections and cancers. Someone in the audience asked why he had not mentioned the earlier work of another researcher, leading the speaker to praise that investigator’s work, which had gone largely unappreciated. Then another hand went up in the audience. It was the earlier researcher himself, who then recounted his saga, adding that the Nobel Prize–winning immunologist Macfarlane Burnet had once come up to him on a London bus to commend him for “immortalizing the cell that makes antibody.”

“The audience went wild,” my father wrote, “well, at least as wild as that type of audience could muster.”

It is not hard to understand why he included this event in his journals. Monoclonal antibodies were the exact type of scientific breakthrough that had drawn my father to infectious diseases in the late 1950s, as the nascent specialty was conquering tuberculosis, polio, and other dread diseases. There was nothing quite so exciting in medicine as learning about a new technology that might save the lives of otherwise doomed patients.

My dad fanatically followed his own patients, even when we were on vacation. He scheduled daily calls from Cape Cod or wherever we were staying to review the cases with the residents or fellows covering the infectious diseases service. We traveled only at the end of the month so that the covering doctors would know the service well, a habit that struck me as utterly inconceivable once my wife and I began the arduous task of planning family vacations that suited all our schedules. In later years, when my parents vacationed each June with my uncle in the south of France, my father still kept tabs on his patients. A June 1990 journal entry noted that he was “consumed with worrying about my patients” and had dreamed about the sickest one the previous night. I am not positive, but I suspect he himself paid for the phone calls from France to Cleveland. Indeed, as the only infectious diseases specialist at Mount Sinai, he was technically on call every day he worked there from 1973 until 1993, when he finally hired an associate. And yet, as Robert Bonomo reminded me, my omnipresent father always made sure to let his younger colleagues “spread their wings.” “What are you trying to achieve?” was one of his favorite questions to his trainees.

My father’s various commitments left little time for the other portion of his job: clinical research. The only time he could do this activity was on nights and weekends. And that’s when he did it. Pretty much every night after dinner, if he was not attending a meeting, he would spend hours reading and writing at a table crowded with books and journals. Within the house, my dad was sort of a wandering Jew. For a while, he used the kitchen table after it had been cleared. However, this necessitated reorganizing and removing the materials every night before he went to bed. So at some point, he commandeered the less-used dining-room table, which could serve as a more permanent repository. The fourth bedroom upstairs, his home office, was piled high with journals, books, and medical charts. New York City gastroenterologist and author Michael Lepore called the colleagues of his who spent their free time doing extra patient care, teaching, and researching the “sons of Hippocrates,” physicians who “gave more than they took.” My dad was doing the same thing five hundred miles to the west.

I grew up thinking that my father’s constant work was essential and commonplace. With important knowledge to soak up and papers to write, he did what he had to do. Sure, it made him less available to his family, but my admiration for his diligence substantially outweighed whatever frustration I felt. Once I was a teenager, I was just as glad to have him occupied and not bothering me. My sister, however, later admitted that she had felt that his work habits were excessive and even selfish. For my mother, her spouse’s constant immersion in medicine was one of many sacrifices she had had to make in marrying a physician who was both an academic and a workaholic. Having now read his journals, I see that publishing his findings was his way of keeping alive the sort of case-based clinical knowledge that he believed was disappearing.