Authors: Barron H. Lerner
Tags: #Medical, #Ethics, #Physician & Patient, #Biography & Autobiography, #Personal Memoirs
The Good Doctor
ALSO BY BARRON H. LERNER
Contagion and Confinement: Controlling Tuberculosis along the Skid Road
The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America
When Illness Goes Public: Celebrity Patients and How We Look at Medicine
One for the Road: Drunk Driving Since 1900
In loving memory of Cooper Dean Stock,
Phillip’s grandson and Barron’s nephew,
August 9, 2004–January 10, 2014
Contents
Prologue
The senior physician, a consultant specializing in infectious diseases, was making rounds one morning in 1996. One of his patients was a woman with end-stage vascular disease and severe arthritis that left her unable to get out of bed. Even minor changes in position caused abrasions and ulcers to form on her extremely fragile skin. The patient had been hospitalized for several months with highly resistant infections and was unlikely to ever leave. On several occasions, she had remarked to the consultant that her quality of life had become unbearable.
When the doctor and his team entered the patient’s room, she was staring straight ahead and not moving. The physician checked for a pulse. There was none, but the woman’s wrist was still warm. She had just died.
One of the younger physicians ran down the hall to get the patient’s nurse. Hospital protocol mandated that the chest team be called and that cardiopulmonary resuscitation (CPR) be performed. Although the patient’s condition was dire, her primary physician had not obtained a do-not-resuscitate (DNR) order that would have prevented the CPR.
Nevertheless, the senior physician overruled this, stating that resuscitation should not be done. But when he and his team left the ward, the nursing staff decided to call the chest team anyway. Hearing this announced on the hospital’s overhead paging system, the physician returned to the bedside. That is when he did something extraordinary: he placed his body over the patient, deliberately blocking his colleagues and foiling their desperate attempts to perform CPR. Despite their frantic objections, he stayed in place for several minutes, until they finally gave up. The patient was declared dead.
Individuals who have recently spent time in hospital settings know all about DNR orders and the need for terminally ill patients to make their own end-of-life choices. This doctor’s decision—to prevent the further treatment of a patient whose condition was terminal—occurred in a period of transition, when Americans were still learning about concepts like informed consent and advance directives. Nevertheless, what the senior physician did was highly irregular, violating both hospital protocol and the evolving ethical standards of the time.
This doctor’s son was also a physician, trained a generation after his father. He had been studying bioethics—the very field that was establishing the new rules about death and dying. When his father told him the story, he was horrified. “You can’t do that!” the shocked son cried. Of all people, he thought, how could his father, such a revered physician, so blatantly play God?
The doctor in this story is my father, Phillip I. Lerner. And I am the son.
When I was growing up, family and friends were always telling me what a wonderful doctor my father was—brilliant, a gifted teacher, and devoted to his craft. Medicine, they said, was his calling. My dad was born into a religious Jewish family in Cleveland in 1932, and his decision to become a physician stemmed from his upbringing, although he himself was not observant. He attended a medical school that emphasized a new, humanistic approach to education. Over the years, he became a highly respected infectious disease specialist, known both nationally and internationally. During my father’s career, he often did not bill patients. He labored most evenings writing detailed scientific papers about cases he had encountered, spent his summer vacations in frequent phone contact with covering physicians, and rewrote his medical-school lectures every year, even though some of his colleagues couldn’t be bothered to do so. He developed incredibly intense relationships with patients and families, intervening in lives, not just diseases. This type of doctoring was a dying art. But it contributed mightily to my own decision to become a physician.
After completing my residency in internal medicine in 1989, I was awarded a fellowship that enabled me to return to school to study history and bioethics. Eventually, I became one of a handful of “MD-PhD historians” who straddled the worlds of both clinical medicine and the history of medicine, seeing patients, teaching students, and writing books and articles. Much of my research into diseases like tuberculosis and breast cancer focused directly on the decisions that various physicians of my father’s generation had made. Many of the ethical precepts instituted in the bioethics movement of the 1980s and 1990s, I found, came in response to transgressions made by my dad’s peers in the decades after World War II.
Moreover, my father himself was one of the guilty parties. As I would learn, during his infectious diseases fellowship, he participated in experimentation on mentally disabled children without obtaining consent from the subjects or their guardians. He had a tendency to conceal information, and at times even outright lie, if he thought that such choices were in the best interests of a patient or a patient’s family. And, as the above story demonstrates, he became increasingly upset—even distraught—about the use of advanced technologies to prolong the lives of dying patients, a situation that bioethicists have termed
medical futility
. On more than one occasion, my dad took matters into his own hands. Physicians, he believed, should simply not be allowed to offer aggressive options to terminally ill patients. This inclination to overrule patients and families violated the principle of patient autonomy, which was at the heart of the emergence of bioethics. Finally, my father saw little wrong in directing the medical care of his own sick relatives, an absolute taboo from our modern perspective. When I suggested that he and his colleagues had made many poor ethical judgments during their careers, he often disagreed.
Ten years after my father prevented his colleagues from administering CPR—or, as he saw it, after he permitted a terminally ill patient to die with dignity—he had developed Parkinson’s disease and was cutting back on his duties as a prelude to retirement. I often visited my parents in Cleveland, and, after each trip, I returned to New York with a stack of the journals that my father had kept, with entries dating as far back as my first birthday, in September 1961.
So just what had my father been writing about so compulsively for all of those years? And why was he doing it? The earliest entries were written only annually, first on my birthdays and then, later, on my younger sister Dana’s birthdays as well. They largely recounted events that had occurred during the previous year and reported on various milestones that Dana and I had reached. I was a precocious child, writing full sentences and memorizing all of the presidents well before kindergarten, which immediately suggested to my dad that I should follow in his footsteps and pursue a career in medicine. He regularly brought me to the hospital when I was a small child, even, I’ve been told, cloaking me in a white coat.
After a while, my father also began to write about cases on which he had served as a consultant, describing the interesting infections he had seen as well as his interactions with his patients, their families, and his colleagues. And then, in 1977, when I was sixteen years old, the floodgates opened. His journals became his primary mechanism for reflecting on two jarring events from that year: my grandfather Meyer’s unexpected death and my mother’s diagnosis of breast cancer at age forty-two. Like so many men of his generation, my dad was tight-lipped with his emotions and not given to outward displays of affection. But as time went on, he increasingly poured his thoughts, fears, and regrets into his journals. Reading these pages, I frequently felt like I was meeting someone I had never known. Yet the writing must have been cathartic. He would continue to confide in his journals for thirty more years. Many of his later entries remarked on how managed care, paperwork, bureaucracy, and other negative developments in medicine made him no longer love being a doctor. He wrote and wrote until 2007, when his Parkinson’s disease progressed too far to allow him to produce legible and coherent sentences.
What I was learning about my father did not exactly jibe with the vaunted image of him that I had had since my childhood. Was he as wonderful a doctor as I had been told by family members, friends, and grateful patients for years? As a historian, I knew it was crucial not to evaluate the actions of past physicians using modern standards. Rather, it was necessary to use the standards of the day. His journals, many of which were written in real time, helped me to do this. So, too, a brief journal of my own, compiled when I was a third-year medical student, reminded me to place my own career in the proper historical context.
Here, then, were many important questions: How could I square my years of training in bioethics with what I now knew about my father? Was he just part of an older era of misguided—even arrogant—physicians who had lost their relevance? Or did I need to revisit the ethical norms that I had embraced and taught to thousands of medical students and residents? Moreover, how could the standards that determined an ethical physician change so drastically over only one generation? I once attended a meeting at which longtime Columbia University College of Physicians and Surgeons gastroenterologist Robert A. Whitlock called Robert F. Loeb, the legendary chair of medicine at Columbia from 1946 to 1960, “the best damned ethicist I ever met.” Yet Loeb was known for bullying medical students on rounds and interacting with patients in a thoroughly domineering, albeit kind, manner. Did Whitlock’s claim make any sense?
I even had to reexamine the episode in which my father covered the body of the severely ill arthritis patient. Was it possible—despite my initial revulsion—that his decision had actually been the correct one? And, more provocatively, did I wish I could have the courage to do that sort of thing myself? And what about my dad’s twenty-four-hours-a-day, seven-days-a-week devotion to his profession and his patients? Was that sort of intense commitment to learning everything possible about one’s patients and their diseases truly the only way to be a good doctor? Did physicians of my father’s era actually know their patients in a different—and better—way than physicians do today?
There is no going back. Patients’ rights are a fixture of medical practice, as they should be. The notion that doctors would deliberately conceal information from patients is almost laughable now. Concerns about sleep deprivation and family time mean that most doctors no longer spend days in a row in the hospital. Indeed, many now simply work shifts. They are as likely to be called health-care providers as physicians. Meanwhile, regulatory changes in medicine seem like a direct rebuke to my father’s generation of physicians. For example, clinical guidelines now tie the hands of individual doctors, forcing them to order only cost-effective tests and to prescribe medications based on the results of randomized clinical trials as opposed to their clinical judgment. And financial concerns mandate that office visits be short and goal-directed, making it much harder for physicians to learn about patients and their families.