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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

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  1. I agree with Art’s view that in Bioethics there was an excessive focus on autonomy and there is a need of more focus on a non-dogmatic non-authoritarian focus on public health. In the latest WHO (2022) MEURI document we reviewed with our Work Group the WHO 2016 ethical justification of emergency use of unproven intervention outside clinical trials because it was only based on autonomy and benefice and didn’t take into account public health ethics considerations (e.g. collective action, justice, non-maleficence).

    World Health Organization (WHO). (2022). Emergency use of unproven clinical interventions outside clinical trials: Ethical considerations. World Health Organization.

    See particularly “1.3 Public health ethics justification of emergency use of unproven interventions”.

    Unfortunately, I agree that mainstream bioethics of the last 60 years was not focused on this topic and we now need to do more work on it in the future to find the right balance of liberty and justice without excesses on either side. I include myself in that need of reeducation, of course. Fortunately, there is solid work on bioethics on public health ethics we can and should revisit. I leave a very personal selection of pre-COVID-19 references just to argue that our response to COVID-19 would have been much worse without them:

    Powers, M., & Faden, R. R. (2006). Social justice: The moral foundations of public health and health policy. Oxford University Press.
    Dawson, A., Verweij, M., & Verweij, M. F. (2007). Ethics, prevention, and public health. Oxford University Press on Demand.
    Smith, M. J., Thompson, A., & Upshur, R. E. G. (2019). Public Health as Social Justice? A Qualitative Study of Public Health Policy-Makers’ Perspectives. Social Justice Research, 32(3), 384-402.

    Public health ethics should be front and center of bioethics courses if we want to have a chance to learn the lessons of the COVID-19 pandemic and get ready for the crises, disasters, and public health emergencies that climate change is making every year more probable and frequent.

  2. “there is a lot of ethical work and persuasion to be done to ground a broader response than to follow individual autonomy”

    the critical ethical lever – trustbuilding leading to trustworthiness of health care systems (including, of course public health) – is the leverage that may facilitate persuasion that guides individuals to choose wisely and well for themselves, their families and their communities

    Justice Gorsuch understands, factually, and correctly, that – in far too many places, far too many times – public authorities poorly built trust and failed at trustworthiness. let’s now make Gorsuch a villain, as if he ’caused’ the problem; he is chiefly a ‘fact finder’ (which is a proper role of judicial proceedings) . and the facts are – increasingly established in the published scientific literature – that public health authorities in too many places and too many times and too many ways – harmed others: lost learning and lost social development harming children, lost livelihoods harming families and households, rising family violence (especially harming girls and women) that was not prevented and treated, rising mental health distress that was not prevented and treated, and more.

    where are Hastings’ proposals to repair these many failures of trustworthiness? regarding communities especially poorly served – that include very many rural American communities – what are Hastings’ proposals to re-build trust?

    recent reporting – – advises that :

    “Between 2011 and 2019, 198 hospitals ceased to provide obstetrics. That number has since increased to 217” [ with growing numbers of closures or threats of closures weekly]. what is Hastings’ ethical advice for trustbuilding with rural communities where they see, now across more than one generation, that the health of rural mothers (aka ‘pregnant persons’) and infants, born and unborn , is so poorly regarded?

    “Between 2014 and 2019, 311 hospitals stopped providing chemotherapy. That number has since increased to 353”. what does that tell rural folks about how much they can trust the health care system serving them, or rather NOT serving them? does Hastings’ equally include the crisis of poor or no rural pregnancy and infant care – along with abortion care – when it discusses reproductive health, reproductive rights, and access to reproductive care?

    “Conversion requirements and other considerations make it unlikely the new rural emergency hospital designation that went into effect Jan. 1 will deliver widespread relief to the rural safety net. Of the 389 hospitals most likely to consider conversion, a Chartis data model identified 77 that are ideal candidates.” should rural folks – victimized by generations of failed federal policies, failed federal funding formulas, failed federal concern for equitable health, social and economic development in rural areas, and also failed state policies and funding – be blithely obedient when distant, elite authorities tell them what to do, or not do … while also belittling them as intellectually and morally inferior (as you piece – sort of – does)?

    trustbuilding, to achieve trustworthiness will hardly be successful, or sustainable, unless ethics leads by insisting that we
    – wisely understand and deploy the many different values of our many different communities, not in authority over them or against them, but in solidarity with them
    – learn how to address and manage our many different assessments/hierarchies of needs and risks, for which we need the full complement of health providers, that include mental health, economic health, spiritual health
    – commit, honestly, to overcome life-threatening disparities and inequities in rural and other communities, perhaps purposefully prioritizing communities with histories of systemic, structural disadvantage
    – build across systems, not just health systems, but also education systems, businesses/workplaces, faith communities and civil society organizations, and media of old, new, and emerging sorts, etc

    indeed, yes, the enemy has been met. we are the enemy if we can’t do that. aren’t we the enemy if we blame the public(s) for their own poor health, accuse them as responsible for their lack of trust and mistrust, and belittle them for resorting to the one thing they do have that is theirs to rely on – their liberty and their livelihoods?

    PS i had the great privilege of studying and working at University of Virginia, with Joseph Fletcher, James Childress, and John Fletcher. i do not recall, or regard, that these idolized ‘autonomy’ in the way the piece seems to suggest.

  3. Since when should we conflate autonomy with simply choosing whatever one wants? Ethically defensible conceptions of autonomy have always included the harm principle: one is allowed to make choices, including unreasonable ones, as long as such choices did not involve direct harm to others. This is hardly the case when people ignore public health protocols in the case of an airborne pandemic. Perhaps we need to return to a more Kantian-inspired approach that emphasizes some form of rationality in the exercise of choice, with ‘rationality’ understood to depend on what all can agree to or what ends can be made intelligible to others. This would significantly limit the use of the label ‘autonomy’ with regard to actions that endanger the health of others.

    1. just so! thank you …

      autonomy is not merely ‘individual’ but in relationship:
      – parents and guardians are part of the relational decision making for/with children,
      – households and communities of households that share faith or moral traditions are part of the relational decision making with members/adherents
      – providers, and, moreover, associations of providers provide guidance
      – communities, large and small, participate in developing, defining and enforcing policies
      – and, especially in present circumstances of concern for mis-information and dis-information, many hundreds, or thousands, or perhaps millions, may be exercising personal decision making in relationship with influential cultural, media and other narratives and discourse about identity, purpose and meaning

      autonomy should not be conceived as some inviolate force of individual will – that resonates in the phrase ‘a right to abortion on demand’ – that disallows others to raise questions of concerns or to seek participation in decision making – as in the practice of blockading parents from the process (continual, not a one-time signature on a one-time piece of paper) of informed consent to gender care with adolescents

  4. Thank you very much, Dr. Kaplan, for your thoughtful analysis of the overvaluation of autonomy in American bioethics. Many European doctors share the criticism of this overvaluation, especially in the Mediterranean area, because the relational dimension is quite important in our conception of life. Hence, there has been significant resistance to the attitude of worship before autonomy as an ‘isolated’ principle of Bioethics.
    I think that it is not only a question of bioethics, but of society as a whole. Because it is possible that bioethics reflects the social substratum from which it arises, and we are facing a much broader problem of the conception of social life as a whole. Therefore, the reflection on the role of autonomy concerns the whole of society.
    Being of course very sensitive to the problems of inequality that are referred to in the debate, we look at the principle of autonomy in a somewhat more relational way, as we do with life itself.
    Gómez-Vírseda, C., de Maeseneer, Y. & Gastmans, C. Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature. BMC Med Ethics 20, 76 (2019).
    Years ago I myself wrote a relational approach to the classic principles of North American bioethics. Not only autonomy, but beneficence and justice have a clearly relational dimension, without which they cannot be properly understood.
    García Pérez MA. El triángulo bioético: una aproximación intuitiva a la ética de la práctica clínica [The bio-ethical triangle: an intuitive approach to ethics in clinical practice]. Aten Primaria. 2004 May 31;33(9):510-5. Spanish. doi: 10.1016/s0212-6567(04)70824-0. PMID: 15207151; PMCID: PMC7669045.
    But even exacerbated individualism is spreading across Europe, little by little undoing the relational ties that constitute society. I believe that a great effort is needed to rebuild these ties in our Western societies to recover the value of what we could call “personal sacrifice” for the common and shared good. Something that, at the family level, we are still able to understand.

    1. indeed,

      the current incoherence of bioethics to answer Professor Kaplan’s question:
      how to achieve “ethical work and persuasion to be done to ground a broader [social, public] response” beyond “individual autonomy”
      mimics the failing social cohesion in many of our societies, and the conflicting – and sometimes aberrant, or abhorrent – ideological strategies propelling greater social distress.

      in the US, ‘progressives’ adopt policy positions that exalt individual autonomy in religious fundamentalist rhetoric – e.g. ‘my body my choice’, – demanding a ‘right to abortion on demand’ and endorsing a duty to deceive parents/guardians of adolescents if the child requests a teacher or provider to deceive them about their gender identity. They exult is using ethical inquiry to ‘liberate’ who they regard to be oppressed. they mistake liberation for ethically sound care. on another hand, US ‘traditionalists’ adopt policy positions that aim to ‘protect’ unborn infants, and gender dysphoric adolescents, by prohibiting medical, clinical interventions without understanding, defining and describing ethically sound exceptions. they mistake protection for ethically sound care.

      in the US these battle lines are made by ideological political partisanship, reinforced by vast sums of money influencing the ‘experts’ announcing who it right and who is wrong, with ‘progressives’ announcing who are the oppressors (often assigning some version of so-called ‘anti-racist’ name-calling) and ‘traditionalists’ announcing who are the villains (often assigned some version of dualistic ‘good vs evil’ narrative). both strategies, in effect, do the same: further degrade civil discourse in public policy discussions, and corrupting ethically sound inquiry.

      as i said above
      trustbuilding leading to trustworthiness of health care systems (including, of course public health) is the leverage that may facilitate persuasion that guides individuals to choose wisely and well for themselves, their families and their communities
      but the current strategies of too many in bioethics appear to know very little, or care very little, about trustbuilding

      too many bioethics experts have forgotten – or foresworn – our earlier bioethics – as I recall – that valued listening and reflecting as much as making pronouncements, that valued openness to uncertainty and a spectrum of opinions more than being ideologically correct

      i recently helped lead a team providing a fruitful discussion of ‘trust and trustworthiness’ for member of American Public Health association during April’s National Public Health Week. failures of trustworthiness of public health authorities through the COVID pandemic were manifest and we established that trust-building had been failing long before COVID (with communities of color, with rural communities, etc: i.e. communities of color, rural communities, and others had arguably sound reasons to mis-trust what public health authorities were commanding, and how some were belittling, stereotyping (even dehumanizing) questioners. it appears that the american public health community – such as it is – knows it needs to do better. whether we will do better I cannot ascertain yet.

      are europeans doing better than americans? who is doing better than us?

  5. Bravo! You are so right! Bioethics has been largely silent on Public health implications. It seems that it took the 2019 COVID pandemic to awaken the field (I hope) through your advocacy to the importance of trust, loyalty, and responsibility for impact of one’s own actions on others as integral to medical decision making.

    There were some who long ago expressed concern about this public health blindspot, though not called by that name. Daniel Callahan’s 1983 piece, “On feeding the dying: In defense of sentiment,” was concerned about the larger social implications (social disaster) of one form of medical killing: withholding nutrition, starving patients to death. Beauchamp and Childress addressed Callahan’s concerns in the 3rd and 4th edition of their seminal text, Principles of Biomedical Ethics. In 1988, Willard Gaylin with 3 other prominent Bioethicists addressed the public health implications of medical killing in the JAMA article “Doctors Must Not Kill.”

    Wouldn’t this be the perfect time to initiate a dialogue, perhaps a conference at Hastings, on the public health impact of medical killing, 40 years later. Questions of trust in the medical profession, the quality of patient-doctor relationships, and social messaging, perhaps reflected in the increasing suicide rates across demographics including a novel group – young children.

    Thank you so very much for your thoughts on the importance of public health considerations in medical ethics.

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