Bioethics Forum Essay
We Have Met the Enemy and It Is Us
In 1978, I was doing a rotation at New York Presbyterian Hospital of Columbia University. I was there as a “special student,” having gotten permission from some higher ups to learn something about medicine. I was staring through an ophthalmoscope into the eyeball of a patient who had papilledema, swelling of the optic disc due to intracranial hypertension. As I left the room with a group of third-year medical students, someone asked if we needed to disclose our status as students to the patients before examining them.
How would I introduce myself—as a pseudomedical student who might go to med school if I decided not to pursue a career in medical ethics by completing a PhD in philosophy? I was sinking fast into a murky ethical swamp.
I need not have worried. The attending, a giant of clinical medicine, laughed and said no, followed by something pretty close to, “This is a teaching hospital. The approval of patients is not needed.” And then we all moved down the corridor, secure in the belief that medical paternalism was alive, well, and unchallenged.
Except that not only was it about to be challenged, but to be knocked on its normative ass.
Tom Beauchamp’s and James Childress’ seminal text, Principles of Biomedical Ethics, was about to be published. They advanced four principles—the so-called Georgetown mantra. Autonomy was number one, and it meant patient autonomy. Fueled by a growing civil rights movement, a backlash against the view that patients could not understand their diagnoses and treatment options, and outrage over deluding vulnerable populations into participation in risky research, the battle against paternalism quickly became an all-out, no-holds-barred war to kill the paternalism ogre.
The hugely influential 1982 report from President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research affirming patient autonomy, Making Health Care Decisions: A Report on the Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship, was soon on many required reading lists for doctors, nurses, and medical students. Autonomy’s guardian, informed consent, was explored, refined, and promulgated in books, articles, law reviews, key legal cases, and major medical journals for more than a decade. Much advice was directed toward health care providers about how to improve communication with patients and how best to involve them in their care.
Revisionists will insist things were never this bad—that patient autonomy over all else was not what bioethics was saying throughout the eighties and well into the nineties. After all, even the Georgetown mantra had four principles. And there was real disagreement about the meaning of autonomy among bioethics thought leaders. Some rooted the value of autonomy in the need to respect people and their dignity. Most saw autonomy as the inherent right of individuals to exercise self-determination.
But, as is true of many conceptual shifts, the followers did not always listen to the nuances of the founders. Autonomy became oversimplified and distorted as it was taught in health care and health law.
Think I’m wrong? Just look at the evidence. If you are a bioethicist working in a clinical setting, you’re likely to hear doctors tell you that no matter how unusual, zany, or outright bonkers a patient’s wish may be, they have no choice but to follow it. “You bioethicists taught us that we have to respect patient autonomy” is the common justification. Only if the patient is a child or manifestly incompetent is there hesitancy and, even then, the hunt for the embers of autonomy is vigorous so that patient values can be honored.
Patient autonomy is great. But it is not the be-all and end-all principle to follow in all health care settings. Especially in lethal, airborne infectious disease pandemics.
American bioethics did little to explore public health ethics until the early 2000s, when thinkers arrived from other nations and brought other perspectives than those of empowered white men. But it was too late. As Covid swept through the globe killing millions a backlash grounded in the worship of autonomy quickly developed in the United States, as well as in other nations. Bioethicists barked about altruism and duties to others, but it was too little too late—the crude autonomy train had left the station.
Supreme Court Justice Neil Gorsuch nicely captured autonomy idolatry when, in a recent opinion, he condemned America’s pandemic response as one of “the greatest intrusions on civil liberties in the peacetime history of this country.” He wrote this opinion when the court rejected an appeal seeking to preserve Title 42, the pandemic-era public health measure implemented by President Trump that allowed the U.S, to quickly expel certain asylum seekers to prevent the spread of Covid.
Gorsuch did not confine himself to Title 42. He went far afield to blast vaccine mandates and lockdown orders. Did he note that many of these measures were both initially necessary and temporary? No. He simply declared autonomy inviolate.
A deadly airborne pandemic requires attention to protecting the weak and the vulnerable. It demands responsibility for one’s community. It requires attention to justice and fairness in distributing tests, prophylactic interventions, and treatments. In other words, pandemics require attention to beneficence, compassion, solidarity, need, and justice—values that were often ignored in the war to crush medical paternalism at the bedside.
Almost no one in the early fight to buck medical paternalism in the doctor-patient relationship was thinking about public health. Modern bioethics got started in the hospital at the bedside, often focusing on very sick patients. Decades later, public health demanded bioethical attention– as the morgues filled, those in nursing homes died in droves, vaccine refusers filled ICUs, and mask refusers told the immune-suppressed to leave them alone and protect themselves it was too late.
Though some bioethicists issued guidance on fair allocation of scarce resources, bioethics as a field could not control unfettered autonomy to defend what rightly needed to be done in the Covid pandemic. Bioethics was hardly the only field or disciple to fail the world during the Covid outbreak. In getting ready for the next pandemic there is a lot of ethical work and persuasion to be done to ground a broader response than to follow individual autonomy.
Arthur Caplan, PhD, is the founding head of the Division of Medical Ethics at NYU Grossman School of Medicine. He is a Hastings Center fellow and a member of The Hastings Center’s advisory council. @ArthurCaplan