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La Vie SÚrieuse
Living and Dying, and the Uncertain Science of Medicine


Wearing a borrowed lab coat on September 5, 1951, Renée Fox stood at the threshold of Ward F-Second, a small research unit in Boston’s Peter Bent Brigham Hospital. Earlier, she had been taken from cubicle to cubicle and introduced to each patient. “This is Miss Fox,” the head nurse explained, “a sociologist who has come to study our ward.”

A Harvard Ph.D. student, Fox was doing research for a dissertation. She was about to embark on a participant-observer study of the little society of men comprised of F-Second’s desperately ill patients and the young physicians of the Metabolic Group charged with their care and also with conducting frontline medical research on them. Fox also stood on the threshold of a career that would open up the new subspecialty of medical sociology. Her dissertation, later published as the vivid and poignant portrait, Experiment Perilous, remains one of the classics in the field.

Now, she watched a group of patients laughing at the far end of the ward. “Why, they all look and act almost as if they were well!” she remarked to herself, wondering what a participant observer ought to be doing. All at once she “found [herself]” walking toward the strange world the little knot of men formed. Huddled around a card table, the inhabitants lifted their faces toward her. “I was asked to join them,” she wrote. “And, in this way, my study began.”

EMERITA BUT NOT RETIRED
Renée C. Fox is the Walter H. Annenberg Professor Emerita of the Social Sciences. A one-time sociology department chair, she also held full professorships in Penn’s medical and nursing schools, and is currently a fellow in the Center for Bioethics.

The apartment she keeps in downtown Philadelphia is immaculate and meticulously ordered. The rows of volumes in her book-lined study are aligned precisely to the very edge of each shelf. A carved wooden crocodile lurks with open jaws at the top of one bookcase.

Fox knows first-hand how suddenly and capriciously misfortune can rip away the grip you think you have on life. As a teenager, she was hospitalized with life-threatening polio and has lived with some residual right-side paralysis, which left her with a slight limp that now requires her to walk with a cane. “I’ve always prided myself on knowing how to fall,” she says, “but now I break bones.” The wrinkles on her face crease along the contours of her smile around eyes that seem to laugh and fret at the same time.

“I don’t like the word retirement,” she remarks. “Emerita is a kind of euphemism for retirement from full-time teaching.” She reluctantly stepped away from teaching classes at Penn in 1999, but a “continual flow” of new and former students, whom she meets in her study or the neighborhood coffee shop, engage her in “peripatetic teaching.” “They seek me out for a variety of intellectual and academic reasons,” she says.

Fox still travels widely—Tokyo, Moscow, Athens, Brussels, Paris, London, Toronto, Capetown, Karachi—to carry out field research for her current project on Doctors Without Borders or to teach and deliver lectures. Journeying is the term she often chooses—sometimes questing—to characterize her vocation as a sociologist, which, she says, has launched her on a lifetime of “inner and outer traveling.”

In a half century of fieldwork in hospitals and medical schools, she has witnessed, analyzed, and told the story—sorting through some of medicine’s toughest issues—of major medical advances, including the first organ transplants and the development and implantation of the Jarvik-7 artificial heart.

THE CERTAINTY AND UNCERTAINTY
The themes of her narrative, though, are not just the astonishing technological feats and forward march of medical knowledge. Over and over her work sounds the notes of human finitude and fallibility, the confounding complexity of human endeavor, and the “ponderable imponderables” of the human condition. “Uncertainty,” she declares. “If there’s something to be chiseled on my tombstone, that would be it.” No matter how often science lifts the veil of ignorance or technical ingenuity devises new ways to cure illnesses and push away death, uncertainty, limitation, and the “double effects” (or unintended consequences) of human action remain inextricable features of medical practice and clinical research.

The physician-investigators of the Metabolic Group were “specialists in uncertainty,” Fox comments. “The only certainty in the world that I was studying was uncertainty.”

Besides learning a specialized body of knowledge and skills, medical students are socialized into an essential set of attitudes, norms, values, beliefs, and behaviors that allows them to become effective doctors. At Cornell University Medical College, Fox observed and interviewed students and instructors about their experiences of medical education. Much of the non-biomedical learning that went into becoming a physician, she noted, seemed part of a “hidden curriculum” that went unrecognized by the faculty. Among the most important of the unspoken lessons were training for “detached concern” and for uncertainty.

Physicians and other health professionals must learn to act with equanimity that balances objectivity with compassion in order to carry out the “life-death-nudity-probing-cutting nature of medical work.” To practice humane and competent patient care, medical professionals cannot go “naked” into their work, Fox contends. “[T]hey must develop intellectual and emotional ‘clothing’ that provides them with some degree of detachment and protection.”

Part of the professional poise nurtured by medical education includes being able to practice resolutely in spite of significant uncertainty over having mastered the enormous volume of established medical knowledge, which is itself always incomplete. Physicians must also learn to distinguish between personal ignorance and gaps in the field of medicine. Fox’s 1957 essay, “Training for Uncertainty,” is still her most cited work and a staple in many anthologies for medical students.

Much of the uncertainty on Ward F-Second came from the research the Metabolic Group was doing “on the periphery of what [was] medically known.” The patients of F-Second were hospitalized with chronic, often fatal, illnesses that were neither well understood nor susceptible to treatment by medical science. They had agreed to have experimental drugs and procedures tested on them. The dual, sometimes conflicting, role of the physician-researchers to care for and conduct experiments on their patient-subjects was a particularly vexing source of uncertainty and stress.

Although the physicians were committed to “basic principles of human experimentation,” the ethical formulas were necessarily abstract, and it was sometimes difficult to judge where boundaries were being transgressed when the principles were applied to living, breathing humans. As clinical investigators, they frequently carried out procedures and administered drugs to obtain scientific information but with little or no therapeutic value for the patient-subjects. Without the proper balance, concern for a patient’s well-being might impede an experiment, while too much experimental zeal could expose a subject to undue risk and suffering.

REPLACEABLE BODY
In the late 1960s Fox teamed up with science and medical historian Judith Swazey to study the brave new world of organ replacement. Their two principal books, The Courage to Fail and Spare Parts, track their observations of some of the 20th century’s boldest experiments in organ transplantation and with the first artificial heart. The books also trace the authors’ evolution from intellectual excitement over surgical daring to a growing “disquietude” over the “expansion organ replacement has undergone . . . its magnitude, its scope, and the medical and cultural fervor by which it has been driven” as well as the “spare parts pragmatism” and the vision of “limitless medical progress” that underlies it.

The “ritualization of optimism” embodied by the heroic “courage to fail” outlook, Fox points out, is an attribute of America’s can-do character that can save lives and achieve great things. “But the zeal that was involved in trying to acquire and replace organs in a hand-to-hand wrestling with death—as if you could overcome death—refused to set limits on how hard you should try or when you should stop.” Such aggressive optimism, notes Fox, can all at once turn against us, causing a great deal of harm and needless suffering. With the publication of Spare Parts in 1992, she and her colleague Swazey ceased their quarter-century of first-hand inquiry into organ replacement. Their decision to leave the field, they admitted, was “a value statement.”

SOMEWHERE IN BETWEEN
A “veteran” F-Second patient captured succinctly Fox’s participant-observer role when he would introduce her. “This is Miss Fox,” he elaborated. “She’s not a doctor exactly. She’s not a patient exactly. But she falls somewhere in between.”

“Medicine,” Fox observes, “is intimately associated, not just abstractly but in palpable ways, with our birth, our maturing, our aging, and our death.” Her work goes beyond the issues of health, illness, and medicine, and touches the deep “moral and spiritual dimensions” of questions that preoccupy all of us, caught for the time being between birth and death. It falls somewhere in between meticulous social science and introspective “journeys into the field” of the human condition.

“The interplay of values and beliefs, symbols and rituals in this realm of human existence,” Fox insists, remain “integrally entwined” with what the French sociologist Émile Durkheim called “la vie sérieuse”—the serious life.

 

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