The director of the medical intensive care unit did not like the idea of having a bioethicist around. But she agreed to the request, and there he was on rounds, most mornings for several months. The year was 1986.
I was an intern at the time and my four-week medical intensive care unit rotation at Columbia-Presbyterian Medical Center overlapped with part of the bioethicist’s research. In reality, Robert Zussman was not a bioethicist but a sociologist who, like so many other scholars during the 1980s, had become fascinated with the new discipline of bioethics and how decisions were made in the clinical setting.
I had the occasion to revisit these events as I researched my new book, The Good Doctor: A Father, a Son and the Evolution of Medical Ethics, which examines and contrasts the medical career of my father, an infectious diseases physician who firmly believed in paternalism, with my own, which took place in an era dominated by informed consent and patient autonomy. The problems that Zussman examined–how aggressive to be with gravely ill patients and who should decide–persist today.
As a first-year medical student at the Columbia College of Physicians and Surgeons in 1982 and 1983, I spent a lot of time at the Center for the Study of Society and Medicine, run by Bernard Schoenberg Professor of Social Medicine David J. Rothman, a historian from Columbia University who had just been recruited to the medical center. I first met Zussman at the center, where he was based during his time at Physicians and Surgeons. I had been a history major in college and, frankly, was feeling a little overwhelmed by the relentless challenge of memorizing scientific facts. Half of my class, it seemed, had already taken biochemistry and histology in college.
Rothman’s first-year class, “Society and Medicine,” had thus been an oasis for me. We learned about the research scandals of the 1970s, such as Willowbrook and Tuskegee, which had violated the post-World War II Nuremberg Code that supposedly ensured the informed consent of subjects. And we debated the well-known 1976 Karen Ann Quinlan case, in which the parents of a comatose young woman went to court to get their daughter removed from a ventilator. Six years later, in the Baby Doe case, parents rejected potentially lifesaving surgery for their newborn infant with Down syndrome despite the objections of many physicians, including Surgeon General C. Everett Koop. What all of these examples had in common was their emphasis on the rights of patients and experimental subjects, which was replacing the physician-based paternalism of the post-World War II era.
So when I began my MICU rotation as an internal medicine intern in July 1986, I had anticipated some of the issues that would emerge there. And it did not take long. The very first patient on whom we rounded was an intravenous drug user in his 40s who had been on a ventilator for many weeks with failure of multiple organs. He had tubes inserted throughout his body and was massively swollen and unresponsive. His prognosis was terrible. There were several similar patients in the 14-bed ward.
Leading rounds that morning was the MICU director, Glenda Garvey, professor of infectious diseases, who had agreed to let Zussman round with us. A gifted clinician who spent countless hours in the hospital due to her devotion to patients, Garvey was a legend among my P&S classmates and me. But Garvey and most of the other MICU attendings were “old school,” much more comfortable monitoring patients’ vital signs and blood tests than confronting the ethical ramifications of their cases. As a result, the prognosis of patients such as the intravenous drug user often did not come up on rounds, even when they seemed to be dying despite our machinations. Moreover, patients or families were rarely asked whether or not they wanted aggressive procedures. We doctors called the shots.
To be sure, I was no expert in intensive care medicine. And while I had grown very interested in bioethics, I was no bioethicist either. So while my fellow residents and I periodically raised ethical concerns, they remained secondary. Zussman, often dressed in a herring-boned sports jacket that made him, in Rothman’s words, a “stranger at the bedside,” said very little on rounds either. But the book that emerged from Zussman’s research, Intensive Care, persists as a snapshot of high-technology medicine in the waning years of paternalism. Zussman ultimately concluded that “moral education” in the unit was “hit or miss” as opposed to systematic. And he believed that the Columbia-Presbyterian MICU (called Outerboro in the book), was particularly “insistent” on “pursuing every therapeutic possibility, even for patients in apparently terminal stages of illness.” During the course of his research in the MICU, only eight patients declined any procedure at all, and seven of the eight either changed their minds or were overruled.
Garvey and her MICU colleagues were hardly alone in this regard. Throughout his career, my father often concealed information, misled patients, and made decisions for them because he believed that he knew best. He was the quintessential paternalist. My dad never could countenance presenting patients and families with a menu of options, as became commonplace in an era of informed consent, although both he and Garvey increasingly engaged patients in decision-making over time. Indeed, Garvey served briefly as the head of the Columbia-Presbyterian Ethics Committee.
As of 2014, patient autonomy has triumphed and is here to stay. But it has not been an unmitigated success. Many patients have little interest in making complicated medical decisions and those who do so are often poorly informed. And patients and families often demand continued aggressive use of expensive technologies in situations, such as at the end of life, when they are futile. Finding the right balance between paternalistic advice from wise physicians and input from patients remains a work in progress.
Barron H. Lerner, M.D., Ph.D, is a professor of medicine and population health at New York University School of Medicine. www.twitter.com/barronlerner.