Revisionism misplaced: why this is not the time to bury autonomy.

• Date: 01 May 1999
• Author: Rothman, David J.

THE PRACTICE OF AUTONOMY: PATIENTS, DOCTORS, AND MEDICAL DECISIONS. By Carl E. Schneider. New York: Oxford University Press. 1998. Pp. xxii, 307. $39.95.

For the past twenty years, bioethics has exerted a profound influence on American medicine. Although its full impact cannot be precisely measured, one need only speak to European physicians and clinical investigators to grasp the full extent of the change. Americans may debate the sufficiency of the information that physicians share with their patients, but hear a European doctor exclaim angrily that it is criminal to ask a woman to decide whether to have a radical mastectomy or lumpectomy, and you know that bioethics has made a significant difference in the United States. So too, Americans, far more intensely than Europeans, will fiercely contest any proposed exception to informed consent in research protocols, and our Institutional Review Boards (IRBs) are unmatched for the protections they provide human subjects.(1)

Not only foreign comparisons but daily events point to the difference that bioethics has made: consider the newspaper space devoted to bioethical considerations, whether the case be multiple births, AIDS testing in Africa, cloning, or organ donation, to choose recent examples; or the readiness of lawyers to have clients sign an advanced directive and proxy assignment; or the intensity of public debate on physician-assisted suicide. Bioethics has clearly become the stuff of referendum campaigns and dinner-table discussions.

To be sure, bioethics did not enter a vacuum. A powerful tradition of medical ethics goes back at least as far as Hippocrates.(2) But the two frameworks are dramatically different. For one, medical ethics was internal to the profession -- physicians generally wrote and read the salient texts. For another, medical ethics tended to focus on doctor-doctor relationships, not doctor-patient relationships. The early professional codes seem more intent on teaching etiquette than ethics -- the most egregious transgression was to steal a colleague's patient. Ethical dilemmas at the bedside were resolved by the individual physician with little formal consultation with colleagues, let alone patients, and without a written record. The physician alone, and on his own, decided whether this case of pneumonia was the old man's best friend and should be left untreated. Finally, the principle of beneficence underpinned all of medical ethics. Physicians' concern for their patients' well-being, along with physicians' superior knowledge, rendered them better able to decide for patients than the patients themselves.

Beginning in the 1960s, and with mounting strength thereafter, bioethics altered each of these aspects of the tradition of medical ethics. Outsiders to medicine -- lawyers as well as philosophers -- pronounced on medical decisions, attentive to every nuance of practice and ready to tell doctors what to do or not to do. At the same time, decisionmaking on ethical issues became collective, evidenced by the emergence of IRBs and hospital ethics committees. It also became formal, that is, subjected to state and federal regulations and requiring written and signed forms, as in the case of "Do Not Resuscitate" orders.(3) Perhaps most notably, patient autonomy became the guiding principle for decisionmaking. It was the old man who was now to decide whether the pneumonia was or was not his best friend. In effect, what had once been seen as beneficence came to be regarded as paternalism.

Although few would dispute the accuracy of this general sketch, one particular question is now very open to debate: Have Americans gone overboard in their dedication to the values of patient autonomy? Restated, have we replaced the tyranny of physician beneficence with a tyranny of patient autonomy? Have we let the letter of the law override the spirit? In the name of advancing the self-determination of patients have we imposed unreasonable and ultimately wrongheaded duties and obligations on them?

This is the central question that Carl Schneider(4) addresses in The Practice of Autonomy, bringing to bear on it an exceptionally wide-ranging knowledge not only of law and bioethics but the social sciences as well. He has read widely in the relevant literature and comes away persuaded of the limits of the bioethics paradigm both in practice and in theory. His book is at once analytic and argumentative, building a case but sprinkling it with deprecatory asides. He announces at the...