The 21st Century Challenge to Autonomy and Informed Consent

Most scholars date the modern bioethics movement back to the 1960s, whether from the founding of the Hastings Center and Georgetown University’s Kennedy Institute of Ethics, or perhaps from a period beginning with Henry K. Beecher’s courageous bit of medical muckraking, detailing in the New England of Medicine no fewer than 22 unethical medical experiments, and ending with the New Jersey Supreme Court’s decision to respect the request of Karen Ann Quinlan’s parents to turn off the respirator. In retrospect, the 1960s in North America were a “perfect storm” of factors that combined to create a truly revolutionary change in the relationship of patients to doctors; of health professionals to each other; of professionals to laypeople. Medicine itself had undergone revolutionary changes, beginning with the discovery of penicillin near the end of WWII. What medicine could do for (and to) patients exploded, from antibiotics to make surgery safer, to kidney dialysis and eventually organ transplants. As medicine did more, there was more to argue about, and what had been essentially private decisions became matters for public debate. A famous example is the article by Shana Alexander in Life, a mass market magazine, shedding journalistic daylight on the deliberations of the “God Committee,” in Seattle, which had the unenviable job of deciding whose life would be saved by dialysis when there were not enough machines to meet the demand. New technologies allowed medicine to keep alive patients with poor quality of life or little chance of long-term survival. Patients, families, and their advocates began to push back against the automatic assumption that longer life meant better life. Plays and movies such as Brian Clark’s “Whose Life Is It, Anyway?” brought the issues into popular discussion. The Hospice movement, begun in the 1960s by Dame Cicely Saunders in London, offered an alternative to the “do everything” mandate of conventional medicine. Elisabeth Kubler-Ross published On Death and Dying in 1969; this hugely influential book argued against the secrecy that isolated dying patients. In a different arena, unethical medical experiments with human subjects became the object of public scandal. Although the field of bioethics “should have begun” as a response to revelations of the role played by physicians in Nazi atrocities, in fact most Americans thought of those atrocities as the work of “ideological lunatics” and saw the Nuremburg Code as irrelevant and unnecessary for “civilized” people. It took the revelations of the Tuskegee experiment and other scandals to raise awareness among the public and in government, culminating in the first presidential commission on bioethics, and eventually in regulations governing the ethical conduct of research with human subjects. For me, the 1960s are perfectly captured by the slogan on a button still rattling around in my desk drawer: Question Authority. Fortresses of hierarchy were crumbling, and there was no hierarchy more entrenched than the practice of medicine. Thomas Szasz slyly analogized the physician to the (preVatican II) priest: he was male; wore special ritual garb; practiced with his back to his audience; spoke a sacred language (Latin) to which his flock was not privy; could not be questioned. Patients at the time were rarely permitted to see their hospital charts; prescriptions were written in Latin in notoriously bad handwriting. But just as Vatican II blew fresh air into the Church (at least for a while), the 1960s challenged the singular authority of the individual doctor. A study in 1961 reported that 90% of physicians would not tell a cancer patient her diagnosis; by 1977, 97% said they would inform the patient, an extraordinary turnaround in less than a generation. One of the …