The Good Doctor (17 page)

But any decision to apply to the Clinical Scholars Program was complicated by the fact that on Christmas Day of 1989, I had become engaged to Cathy Seibel, a federal prosecutor in the Southern District of New York. To say that Cathy had no interest in leaving New York—even for two years—is a major understatement. She had been born and raised in the area, gone to Fordham Law School, clerked for a federal judge in Brooklyn, and landed the job of her dreams in Manhattan. Two of the Clinical Scholars sites that fit my interests were located relatively nearby, one at the University of Pennsylvania and one at Yale University. These programs raised the possibility that Cathy could keep her job and one or both of us would take on a longer commute. But another logical location for me was the University of Washington in Seattle. The ultimate choice of location was made by the program.

I eventually listed all three universities as places that I would be willing to attend, and Cathy extracted a promise from me that if we had to leave New York for two years, she could pick where we lived for the rest of our lives. When the Clinical Scholars Program called me with their decision, it turned out to be Seattle. Although the city was regularly listed as one of the most livable in America, and our friends and family foresaw a great adventure for two inveterate New Yorkers, Cathy was not happy, except for me. But it helped that she was able to find a position in the US Attorney’s Office in Seattle. We also doubled the size of our New York City apartment while paying only half our old rent.

Once I arrived in Seattle in July 1991, I knew the opportunity would be a spectacular one for me. My father agreed, even though he originally wished that I had chosen a career in a cutting-edge field like immunology or geographic medicine. He predicted that my fellowship would be an “important milestone” in my life, just as his training in infectious diseases had been for him. My fellow clinical scholars, both in Seattle and across the country, were incredibly bright and motivated. The directors of the University of Washington program, Thomas Inui, Thomas Koepsell, and Richard Deyo, were terrific mentors. And the medical school’s Department of Medical History and Ethics was populated with top-notch faculty, including chairman Albert R. Jonsen. A former Jesuit priest, Jonsen was one of the founding fathers of the field of bioethics, having sat on the influential National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the President’s Commission on the Study of Ethical Problems in Medicine. I formally enrolled in the department’s master’s program, which I planned to complete by June 1992.

In addition to doing my coursework, I served as a research assistant for Jonsen, who was writing a history of the bioethics movement,
The Birth of Bioethics
. This task was well suited to my interest in history: researching how physicians had addressed ethical issues in medicine before the rise of the bioethics during the 1970s and 1980s. Working directly with Jonsen was a great advantage for another reason. To some extent, Jonsen’s book was a response to David Rothman’s book on the rise of bioethics,
Strangers at the Bedside
, which he had researched during my years as a medical student and resident at Columbia and published in 1991. The two books, both excellent, told the same story in dramatically different ways. Rothman, the historian, situated the bioethics movement firmly among the social movements of the 1960s and 1970s that had rejected traditionally powerful organizations. Jonsen, in contrast, had written more of a disciplinary history that examined the careers of the theologians, philosophers, and other academics who—like him—became the first leaders of the bioethics movement. For a young historian, it was a lesson in historiography (the history of telling history) that I would never forget and would use in my own research and teaching.

Despite their distinctive approaches, both Rothman and Jonsen stressed a common theme: prior to the era of bioethics, physicians had often overstepped their power and, at times, treated patients as somehow less than human. Meanwhile, both authors applauded the role of bioethics in asking what had gone wrong with the moral bearings of the medical profession.

There was great variability in the nascent field of bioethics, not only in the disciplinary background of its membership but also in their assessment of what behaviors should be labeled objectionable or unethical. For example, though the historian Rothman and the theologian Jonsen both liberally criticized the actions of many specific physicians, neither were doctor bashers. In contrast, Yale University psychiatrist Jay Katz more directly laid blame on his fellow physicians for deliberately excluding patients from active participation in their care. Doctors, he wrote, had created a “silent world of doctor and patient,” in which they wrote orders that patients were supposed to follow and never question. These negative assessments of the medical profession mirrored the contemporaneous work of critics such as Michel Foucault and Ivan Illich, who had no formal connection with the field of bioethics.

At times, this scholarship made me feel defensive. Although I had been a physician for only five years, I had enough admiration for my peers and superiors to worry that bioethicists tended to tar the medical profession with too broad a brush. Issues that seemed black-and-white around a conference table—such as whether to let a human “vegetable” die or tell a cancer patient every last bit of information about his or her condition—were considerably more complicated when one was dealing with actual patients and families.

Nevertheless, I was far too immersed in the worlds of history and bioethics not to embrace the basic core of what these scholars and critics were arguing: Physicians, while perhaps having noble motives, often behaved in ways that could be described only as patronizing, paternalistic, and uncaring. They routinely misled patients, disregarded ethical codes designed to protect the rights of experimental subjects, and failed to take informed consent seriously. Moreover, I had become a full-fledged fan of efforts designed to rectify this situation: the passage of do-not-resuscitate laws that empowered patients and families to select or decline cardiopulmonary resuscitation; the call for physicians and hospitals to tell the truth when a medical error occurred; and, most important, the insistence that there be true informed consent when a subject agreed to enter an experimental protocol or when a patient—such as a woman with breast cancer—agreed to a particular treatment.

This mind-set surely informed my choice of a dissertation topic. I had successfully completed my master’s degree in medical history and ethics by June of 1992 and, with one year left in my Robert Wood Johnson fellowship, had decided to enter the PhD program in the University of Washington’s Department of History. The plan was to take required courses for two semesters and then complete pre-dissertation exams in four subjects: the history of medicine, bioethics, the history of science, and twentieth-century US history. I would then look for a job, presumably in New York, and complete my dissertation long distance. I had been reading extensively in all these areas since my arrival in Seattle and in a few history courses I had taken at Columbia prior to the move. My ability to complete so much in two years reflected not only my hard work but also a supportive wife and a series of colleagues and mentors, including my dissertation advisor, James C. Whorton, who went out of their way to design a strategy for a practicing physician to become a legitimate PhD historian.

Several people suggested possible dissertation topics, such as a history of University of Washington physician Belding Scribner’s arteriovenous shunt, which had made chronic kidney hemodialysis possible and led to the 1962 God Squad controversy that I had learned about during medical school. But what really interested me were some informal remarks I had heard about the treatment of tuberculosis in Seattle in the years after World War II. The physicians who staffed the city’s Firland Sanatorium had apparently been the country’s most aggressive advocates of forcible detention for tuberculosis patients who did not reliably take their medications. If these rumors were true, this topic, which seemed to demonstrate another possible example of the medical profession’s excesses, would be an ideal way for me to combine my interests (and growing expertise) in history and ethics.

Of course, I needed to verify the story before embarking on such a major project. Fishing around one day in the University of Washington archives, I struck gold. In the papers of the Washington State chapter of the American Civil Liberties Union, I found letters written by Firland patients charging that “people who have had negative sputum for months may be placed under quarantine,” that patients who drank beer while on approved leaves had a “very good chance of being thrown in jail,” and that doctors—not judges—“may sentence a patient from one day to six months” on a locked ward within the sanatorium. These documents proved to be only the tip of the iceberg. I eventually got access to the actual Firland patient charts that contained not only many similar letters but proof of what the patients had charged. Firland’s locked ward, officially established to detain actively infectious patients who represented public health threats, had become, in the words of one patient, “a jail in every sense of the word.” Unfortunately, despite efforts to engage local ACLU representatives, little changed at Firland until the institution was closed in 1973.

What had made the Seattle doctors behave in this manner? It turned out that at the time, the city was home to a large population of itinerant workers, many of whom were poor alcoholics living in Seattle’s Skid Road area. Confronted with a challenging population of patients who broke sanatorium rules, the physicians took it upon themselves to become policemen. This medical authority manifested itself in another, even less probable, manner. Firland surgeons removed portions of Skid Road alcoholics’ lungs—even when such patients had inactive tuberculosis—on the assumption that the patients would revert to alcohol abuse upon release, fail to take their medications, and again develop active tuberculosis. The Firland staff unabashedly wrote in such patients’ charts that they were ordering surgery for “sociological,” as opposed to medical, reasons. A patient who was “Indian, alcoholic, a schoolteacher, and divorced,” a former Firland surgeon told me, was “sure to get a resection.” Even though partial lung removal most likely left enough lung tissue in place for the patient to live a normal life, surgery left scars and was not without risks. Moreover, it is almost impossible to imagine that these Skid Road patients were able to question the need for such operations.

My dissertation was completed in 1996 and eventually became my first book,
Contagion and Confinement
, published in 1998, after I had returned to Columbia as an assistant professor. My second book,
The Breast Cancer Wars
, contained even more dramatic examples of hubris from this era. Surgeons, often more impressed with their ability to perform heroic operations than with the actual value of such procedures, removed ribs, arms, and legs of certain patients with advanced cancers in an effort to remove every last cancer cell. “The purpose of the surgeon to divorce his patient from the cancer,” coldly wrote George T. Pack in 1951, “appears to be limited solely by the ability of the human remnant to survive.” One surgeon termed patient-activist Rose Kushner’s pathbreaking 1975 book on breast cancer “a piece of garbage.” Avoiding a radical mastectomy due to “feminine whims,” another surgeon wrote derisively, would result in a “dead woman with a somewhat more pleasant-appearing chest wall.”

I don’t exactly recall when I started making connections between these types of statements and my father, but it was most likely in the early 1990s as I was pursuing my degrees in bioethics and history. To be sure, he had never had the occasion to lock up tuberculosis patients or to remove any organs, let alone limbs. But as I became more and more involved in studying the history of bioethics, I found worrisome parallels. One of the first I learned about was my father’s participation in human experimentation in which informed consent had not been obtained from the subjects. We had been discussing such research in 1994 after the journalist Eileen Welsome broke the astounding story that the US government had funded hundreds of radiation experiments performed on unknowing Americans during the Cold War years.

“I did some similar experiments when I was an infectious diseases fellow,” my father told me during a visit to Cleveland. The remark caught me by surprise. “Are you serious?” I recall exclaiming. He went on to explain that one of Louis Weinstein’s many projects had involved determining blood levels of antimicrobial drugs after subjects received injections of the medication. Such research helped doctors figure out the best dosing schedules. Weinstein’s team had conducted the experiments at the Wrentham State School, an institution for mentally disabled children, injecting the children despite the fact that they were not sick. The consent process, my father suspected, had been minimal. I immediately peppered him with questions. What did he think, in retrospect, about his participation?

“We did things you could never do now,” he told me. Protocols, he believed, had changed for the better.

I asked my father whether he or any of his colleagues had raised eyebrows at the time of the experiments. Did anyone ever mention the post–World War II Nuremberg Code that specifically prohibited this type of research? The answer was an emphatic no.

“These institutions were glad to participate in prestigious research,” my dad said. “And so were Weinstein’s fellows.”

When I looked up the Wrentham State School, which was located in Wrentham, Massachusetts, thirty miles south of Boston, it sounded eerily like the other institutions that populated articles and books that criticized unethical human experimentation. Wrentham, founded in 1906, housed what were originally called feebleminded and later mentally retarded children. It turns out that some of the radiation experiments unearthed by Welsome had taken place there in 1961, concurrently with the Weinstein group’s investigation of antimicrobial-drug blood levels.