This week, the WHO announced that it would cease to designate COVID-19 a “public health emergency of international concern,” affirming its status instead as an “established and ongoing health issue.” There is a distinction between the emergent and the established, the epidemic and the endemic, the disastrous and the everyday.
Bioethics often traffics in disaster—in the limit cases, the extremes. Over twenty years ago, ethicist Laurie Zoloth reflected in the Hastings Center Report on why bioethics had yet to meaningfully grapple with the complex yet mundane matter of health care reform. The field had historically been “drawn to the big-ticket debates in health care because of how philosophy constructs and interprets the phenomena,” Zoloth suggested; “Even narrative bioethics focused on the most interesting stories, stories with drama, unique situations, true-to-life adventures” (37). Indeed, in the years before COVID-19, my narrative bioethics class tackled the issues of health care rationing through the lens of emergency, attempting anticipatory simulations of pandemic resource allocation in an activity modeled on the “deliberative democracy” study conducted in East Baltimore in 2012, in which laypeople were asked to consider methods for allocating ventilators during a hypothetical influenza pandemic that overwhelmed critical care capacity. Participants debated how the imperative to “prioritize those most likely to survive” measured up against other potential criteria—age-based rationing, lottery, determination of social “usefulness,” etc. (Daugherty Biddison et. al. 779). How do you decide?
For most of us, we don’t decide—or we do what we can not to—if the way this exercise tends to play out in my classes is any indication. We deflect with dark humor or spin out increasingly absurd scenarios. We demur, we defer responsibility. “Someone should really think about these things,” we think. “Someone should assert some authority.” And, ultimately, at the core of such discussions is usually the fervent wish that—whichever system is designed, whoever designs it—we will be its beneficiaries.
During the early months of the COVID-19 pandemic, the reality of health care rationing—an idea that had been accessible to many laypeople in only the most speculative, simulated, and rhetorical ways, became a prominent feature of the news cycle. At first, all eyes were on the Italian hospitals, with alarm tempered by a buffer of American exceptionalism. But then, New York City. Writing in the New York Times in April 2020, E.R. physician and Columbia University professor Helen Ouyang attempted to communicate the enormity of the crisis gripping the city’s overwhelmed health care system. “The question of who gets a ventilator and who doesn’t comes up in every single Zoom meeting among E.R. physicians that I participate in,” Ouyang reported; “A hospital committee is discussing that, we’re told. We want guidelines.”
The concept of distributive justice puts us in mind of discrete material resources—ventilators, beds—of which there are only so many. The second phase of the Maryland experiment emphasized this materiality, as participants were asked whether it would be ethical to remove a ventilator from one patient to give it to another. Researchers reported that, while some interpreted this as tantamount to murder, others “suggested that ‘survivability’ is ‘key,’” reasoning “that the patient’s clinical trajectory be taken into account.” At the same time, researchers noted, these same participants “were concerned about bias influencing those decisions” (Daugherty Biddison et. al. 782).
Another deliberative democracy study conducted in Texas in 2018, whose results were published in the Journal of Participatory Medicine in March 2020 at the moment the coronavirus pandemic was escalating to the status of global public health emergency, noted the expression of a similar apprehension about the potential for bias, even as most affirmed their trust in health care providers more broadly. Moreover, both groups expressed concerns about unfairness stemming not just from the deciding stakeholders, but from those whose lives constituted the ultimate stakes. Echoing the suspicion that often inflects political health care debates, some posed questions like, “What if someone tries to ‘game the system’ (eg, give false medical histories to circumvent a survivability assessment)?” (Schoch-Spana et. al.)
Both strains of angst—that providers’ decisions will be influenced by bias, that patients will attempt to influence outcomes, i.e., “game the system”—seem to hold “the system” itself as a stable, ethically neutral entity: in other words, it is in the interpretation or manipulation of the system’s guidelines that the jeopardy of ambiguity lies. We are less ready to acknowledge or give voice to the deeper anxiety that “survivability assessments,” or speculative projections of a patient’s “clinical trajectory,” are themselves uncertain, contested, and informed by a range of social, political, and economic factors that must be “exposed” to be considered.
Reporting on the COVID-19 pandemic has favored the rhetoric of “exposure”—as in, COVID-19 has “exposed” racial disparities in the American health care system, in the way that the murders of George Floyd and other unarmed Black men have supposedly “exposed” racism in policing. But the rhetoric of exposure raises the question of for whom these truths are being exposed—that is, those who have long held the privilege of not seeing. Headlines like this one put it more aptly—the evidence, be it demographic data or cell phone footage, “proves” that which those who bear the burden of injustice already know.
This is all to say that the way we tend to associate questions of triage, survivability assessments, and distributive justice with disaster situations can create a false dichotomy, distinguishing “disaster ethics” from the “everyday ethics” of clinical encounters. But we must also consider a third category, one we might term disasters of the everyday. Invoking Ruth Wilson Gilmore’s notable definition of racism as “the state-sanctioned or extra-legal production and exploitation of group-differentiated vulnerability to premature death,” Sara Ahmed puts it aptly when she asserts, “Racial capitalism is a health system: a drastically unequal distribution of bodily vulnerabilities” (238). In recognizing unequal distribution of vulnerability and risk as we consider the distribution of “scarce” resources—many of which are themselves determined by the capitalist logic of false scarcity—we must formulate an everyday disaster ethics, one that reckons with how “natural disasters” are rarely, if ever wholly, “natural.”
In her writing on the unnatural disaster commonly known as Hurricane Katrina, Susan Scott Parrish refers to the event as “the New Orleans levee disaster” (5). It was not the hurricane in and of itself, after all, (though of course even the hurricane in and of itself must make us consider our own role in hastening and exacerbating climate catastrophe), but social and structural factors—neglect of the city’s infrastructure and failure of federal response—that placed Black communities at extraordinary risk, that engineered the conditions for non-survival long before any survivability assessments could be conducted in a clinical context. Audre Lorde names this reality pointedly in her poem “A Litany for Survival”: “We were never meant to survive.”
We might think of “the COVID-19 pandemic,” too, in alternative terms—as the American pandemic preparedness disaster, the American racial health disparity disaster, the American ageism and ableism disaster, a disaster that did not so much “expose” as repeatedly affirm that there were those who were “never meant to survive”: old people, disabled and chronically ill people, people with so-called “pre-existing conditions,” people of color, and low-income workers who were determined to be simultaneously “essential” and expendable.
Early in the pandemic, Roger Serevino, director of the US Department of Health and Human Services’ Office for Civil Rights, spoke out against what he termed the “ruthless utilitarianism” of certain state COVID triage protocols that would allocate lifesaving resources on the basis of factors like age or disability. If utilitarian ethics strive to maximize good, maximization necessitates measurement; thus maximizing good is often interpreted as maximizing number of lives, because lives are a thing that we can count. I find my own students tend to favor utilitarian ethics, prioritizing “most lives,” and thus “most likely to survive,” because it seems more objective and less ethically fraught. But these assessments tend to conveniently ignore the manifold ways in which we socially engineer the conditions for survival.
In December 2020, as the Omicron variant swept the US and health care providers were increasingly faced with not only the practical problems of resources, but with profound moral injury and burnout, Jordan Kisner wrote clearly and compellingly in The Atlantic about the problems of such utilitarian logic: “As reasonable as ‘save the most lives’ sounds,” Kisner noted, “In the U.S., the disease disproportionately kills people of color, those with preexisting conditions (sometimes linked to poverty), the elderly, and people with disabilities, so a system of care that privileges only survival odds reinforces existing injustices.” As Benjamin Tolchin and colleagues noted in the Journal of Medical Ethics, “The risks of becoming acutely sick and having survival-limited comorbidities—the characteristics that utilitarian triage protocols use to deprioritize and exclude people from receiving critical care resources—are largely driven by social determinants of health” (200). The ethical imperative to prioritize those “most likely to survive,” then, is never simply a question of how many lives we can count, but of whose lives count—not the mere matter of lives, but whose lives matter.
An everyday disaster ethics must consider how discourse interacts with disaster. The neoliberal discourse of “care,” for example—that certain people are unworthy of medical or state care because they have failed to “take care of themselves,” a phrase that directly hearkens to the paternalistic justifications for slavery—emphasizes individual responsibility but elides the structural conditions that create the need for care, or render self-care possible.
The discourse of the “pre-existing condition,” too, has infiltrated deliberation about the distribution of health care, as if the body could pre-exist or exist outside of the very structures that distribute vulnerability and risk. Disability justice activist Alice Wong has spoken out against ideologies and policies which deemed disabled people necessary and acceptable “collateral damage” during the pandemic: “For many disabled, sick, and immunocompromised people like myself,” Wong affirms, “we have always lived with uncertainty and are skilled in adapting to hostile circumstances in a world that was never designed for us in the first place.”
Echoing Lorde’s meditation on those “never meant to survive,” Wong’s emphasis on design puts us in mind not only of unnatural disaster, but of the fundamental animating belief of much humanistic scholarly work: that what has been constructed can be dismantled, that what has been designed to privilege unjust distribution might be redesigned for justice.
Note: This post is adapted from a keynote address delivered at the University of Michigan Medical School 2023 Spring conference.
Works Cited
Ahmed, Sara. Living a Feminist Life. Duke UP, 2017.
Daugherty Biddison, Elizabeth L., et al. “The Community Speaks: Understanding Ethical Values in Allocation of Scarce Lifesaving Resources During Disasters.” Annals of the American Thoracic Society, vol. 11, no. 5, 2014, pp. 777-783.
Parrish, Susan Scott. The Flood Year of 1927: A Cultural History. Princeton UP, 2017.
Schoch-Spana, Monica, et al. “Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study.” Journal of Participatory Medicine, vol. 12, no. 1, 2020, e18272.
Tolchin, Benjamin, Sarah C. Hull, and Katherine Kraschel. “Triage and Justice in an Unjust Pandemic: Ethical Allocation of Scarce Medical Resources in the Setting of Racial and Socioeconomic Disparities.” Journal of Medical Ethics, vol. 47, no. 3, 2021, pp. 200-202.
Zoloth, Laurie. “Heroic Measures: Just Bioethics in an Unjust World.” Hastings Center Report vol. 31, no. 6, 2001, pp. 34-40.
Cover Image
Discarded Mask on street. Wikimedia Commons.
