Book Review

Bargaining for Life: A Social History of Tuberculosis, 1876-1938

N Engl J Med 1994; 330:1023-1024April 7, 1994

Article

Bargaining for Life: A Social History of Tuberculosis, 1876-1938
By Barbara Bates. 435 pp., illustrated. Philadelphia, University of Pennsylvania Press, 1992. $45.95 (cloth); $19.95 (paper). ISBN: 0-8122-1367-X

Bargaining for Life reminds us that those who fail to remember history are condemned to repeat it. It is a thoroughly researched, well-written book that describes the efforts to control tuberculosis in Philadelphia between 1876 and 1938, with a focus on the origins, development, and growth of institutions for patients with the disease. The central character in this story is Lawrence Flick, a physician who recovered from tuberculosis and went on to devote his life to the disease. The essential elements of both his story and societal attitudes toward the institutionalization of patients with tuberculosis can be found in the history of the AIDS epidemic today.

The earliest support for patients with tuberculosis came from the church, as an outgrowth of its concern for the poor. A special relief fund for poor patients with consumption was sponsored by the Philadelphia Protestant Episcopal City Mission. The mission soon deemed a residential facility necessary, but its goals were spiritual: institutionalization was offered to save patients from the moral decay that caused their illness. Flick was an early believer in the contagiousness of tuberculosis and in the possibility of interrupting its transmission by isolating patients and preventing new cases. The conflict between new ideas and established dogma is seen in Flick's fight with his colleagues as he tried to force them to recognize the link between public health and individual physicians treating individual patients. Too radical to function within an established hospital, Flick worked initially with the mission, and the secular medical model of tuberculosis gradually superseded the spiritual one. As diagnosis, treatment, and the possibility of cure became concrete, institutionalization was offered as therapy.

The most interesting section of the book describes the rise of the sanatorium movement. In the early, small, private institutions caring for the poor, we see a fascinating and repulsive concoction of remedies offered up as definitively curative -- dietary therapy consisting of dozens of eggs and quarts of milk daily, creosote treatment, and ventilation therapy carried to the ultimate, with patients nearly freezing to death. Discipline and control became an increasingly dominant part of treatment, eventually an end rather than a means. Later, as tuberculosis control became a public responsibility, the state sanatoriums preempted the private institutions in terms of the numbers of beds, services offered, and public recognition. A fascinating chapter describes the conflict within the emerging nursing profession between advocates for home care by visiting nurses, who would educate patients about tuberculosis and thereby enable them to remain among loved ones, and those who claimed that institutionalization was necessary to educate and segregate patients because the poor, with their inadequate financial resources and poor diets, could not be helped while living in crowded homes.

Although seemingly humane in motivation, the sanatorium movement ultimately reflected a desire to control the chaos of disease and poverty. The people affected, however, largely preferred to retain a modicum of control over their own lives. The weakest part of the book is the voice of these people. Bates tells us she wants the patients to be heard, but in the end, they sound whiny and petulant. There are too few in-depth portraits of individual patients, and the tragedy of countless lost young lives fails to move us as it should.

Ultimately, however, Bates drives her point home, and we are left inevitably comparing the AIDS epidemic with this earlier one. An institutional solution is periodically advocated for patients with AIDS, a “specialty hospital” where patients would benefit from a concentration of experts. But Bates clearly shows us how this had the opposite effect on tuberculosis care, guaranteeing that it remained outside mainstream medicine. Home care for patients with AIDS is among the first casualties in state budget cuts of human services, institutionalization of these patients being easier and cheaper for the state, even as it was for patients with tuberculosis. And finally, the transformation of Flick from a fanatically dedicated advocate for patients with tuberculosis into a bitter, angry man who blamed these patients for failing to adhere to what were impossible prescriptions for an incurable disease now occurs among health care workers treating those with another incurable disease. Today it is called burnout, a euphemism for a much more profound failure that reformers of the system would do well to understand.

Karen Brudney, M.D.
New York, NY 10025