The Poverty of Bioethics: Medical Austerity, Distributive Justice, and Disability
As supply shortages run rampant in hospitals across the United States, frontline healthcare workers are being instructed to prepare to work without personal protective equipment (PPE). Hospitals in New York, Washington and Chicago have been “muzzling nurses and other health-care workers” who dare speak up about their brutal working conditions. Two weeks ago, the top E.R. doctor at a major New York City hospital, Dr. Lorna Breen, committed suicide due to the trauma. She isn’t the only frontline casualty — hundreds of frontline workers at New York City hospitals have either fallen ill or died of COVID-19.
To make matters worse, the Trump administration has been hording PPE, and withholding federal aid from blue states. This reckless endangerment of the workers undermines the American healthcare system’s capacity to cope with the COVID-19 pandemic at its core.
Medical Rationing and the Failure of Bioethics
But the system isn’t the only one being asked to “cope.” With patient intake increasing at a logarithmic scale and medical resources in critically short supply across the board, frontline hospital workers are taxed with making extremely difficult moral decisions over who lives and who dies. In emergency care, doctors and nurses use medical triage to rapidly rank both the probability of potential patient survival and their expected quality of life should treatment be given. This helps determine how scarce medical resources get allocated.
On the face of it, this seems like a decently progressive policy, one which puts power back in the hands of the workers. In reality, however, frontline hospital workers are fundamentally disempowered by the burden of responsibility that they bear for impossible moral decision-making. This is simply because the workers possess no real power over the systems which determine how—and how many—medical resources can be made available at any given moment. Most hospitals have established bioethics protocols to help guide workers through such impossible moral decisions. The scholarly discipline of bioethics has played a significant role in shaping the modern practices and discourses of biomedicine. Philosophers trained in the subfield in the latter half of the twentieth century argued that the expansion of research and development into new therapeutic techniques and biomedical technologies created a whole new set of ethical problems, which required their unique kind of expertise.
History proved them right. Today, bioethicists can be found on staff at all major hospitals, as well as on the executive boards that oversee the creation of new pharmaceutical drugs, new policies, and other consumer healthcare goods and services.
However, when the burden of impossible moral decision-making becomes routine, established bioethics protocols can do little to alleviate the dread of “unavoidable moral failure,” which builds on each worker’s individual conscience.
The psychology of unavoidable moral failure is fairly straightforward — the “unavoidable” part is usually what hits us last. “There was nothing more that you could have done” and “it wasn’t your fault” are repeated enough to be cliché in post-traumatic recovery and grief counselling. Nevertheless, they serve an important therapeutic purpose. When we bear individual responsibility for an impossible moral decision — one with no good outcomes — we tend to internalize guilt. This is how a traumatized psyche reduces the stresses of systematic complexity to minimally intelligible, individual culpability.
To put it in a parlance that is equally familiar to both post-traumatic recovery and our post-pandemic cultural moment: we are told to focus on what lies within our ‘span of control’, which usually means (especially for those who lack control over their own lives) the individual.
Without sufficient time between each event to process the trauma inflicted by repeat exposure — not only to exhaustion and potential viral infection, but to unavoidable moral failure — there is a real danger that frontline hospital workers will never have time to heal; that they will perpetually misrecognize the endemic failures of the system in their own misplaced symptoms of guilt, moral anomie and post-traumatic stress.
Mainstream Bioethics and Survivability
Unfortunately for these workers, mainstream bioethics provides no way out of the cycle of victimhood and abuse. Three mainstream theories are worthy of note: they are utilitarianism, deontology and Rawlsianism. Survivability assessments are a good example of a simple utilitarian judgement: decide who gets treatment based on whoever derives the most good — the greatest “utility” — from the supply of resources we have available. Conversely, deontology views patientcare as a long-term continuous relationship, where doctors have a special moral obligation not only to their patients’ physical health, but to their overall well-being.
If utilitarianism looks like the signature decision-making procedure of a system indifferent to morality, then deontology more closely resembles the intuitive moral judgements of physicians. Medical ethicists have noted how the conflict between utilitarianism and deontology “leads to mistrust and misunderstanding between managers and clinicians.” Hospital bioethics protocols typically mediate this conflict by incorporating some mixture of the two.
Under the exceptional circumstances of the pandemic, deontology is forced to buckle to brute utilitarian calculation. Immanuel Kant, the father of deontology, purposefully limits the scope of his system of morality for precisely this reason. In Kant’s words, “ought implies can,” meaning that the impossible cannot be a moral obligation. Hence, while the strict utilitarian experiences no moral conflict in distributing access based solely on the criterion of survivability, the deontologist’s entire system of morality collapses by doing so.
Despite their differences in the abstract, there is broad consensus among bioethicists that scarce resource allocation should prioritize survivability and expected quality of life with treatment. This may be well and good so long as moral interactions are localized, viewed on a case-by-case basis. But when generalized, the strict utilitarian calculus acquires chilling new effects.
Take for example survivability. Health outcomes are determined by more than just patient biology. Healthcare workers also consider a whole range of social factors, including employment status and education, home and work environments, individual habits such as diet and exercise, etc. Among social determinants of health, poverty is almost as predictive as smoking (with which it is an associated risk factor) of poor health outcomes. The true moral cost of deontology buckling to brute utilitarianism is that frontline hospital workers are thus compelled to suspend their own moral judgement in assessing the system’s eugenic implications for the poor.
Distributive Justice and the Allocation Problem
It is possible that certain individual decisions only achieve moral relevancy when applied on a systematic scale. This can be shown through an application of the “Wilt Chamberlain problem” (aptly named by the prescient Marxist scholar G.A. Cohen, since Chamberlain — an NBA all-star in the 1960s — would likely have been first in line to access testing were he still alive today). The problem was originally framed in response to the libertarian political philosopher Robert Nozick. In Nozick’s example, Chamberlain signs a lucrative new contract, in which it is agreed that he will receive twenty-five cents from each home ticket sold. The total ticket price is worth it to each fan to come watch Chamberlain play. So popular is Chamberlain that one million people end up buying home tickets in a single season, meaning he ends up with $250,000 — which Nozick notes is “a much larger sum than the average income” (he was writing in 1974). The first distribution, D1, is of twenty-five cents, and the second, D2, is of $250,000. According to Nozick, insofar as each instance of D1 is just, D2 is also inherently just.
Cohen redefines the quantity being distributed not in terms of “justice” (defined as voluntary exchange in the libertarian schema), but in terms of “liberty” (defined as freedom of access to advantage). Because D1 and D2 imply different constraints upon other persons’ liberties — their access to economic advantage, in this case — there is in fact a major discontinuity between them.
From here, we can see how inequalities are both produced and redistributed by the system, rather than being external to it. Cohen’s argument carries in the case of rationing medical triage: the fairest distribution of access to medical resources in each individual case does not necessarily entail that the systemwide pattern of distribution is the fairest of all possible configurations.
Can there be any rapprochement between deontology and utilitarianism, between individualistic and pure systems-thinking? The third mainstream bioethical theory, Rawlsianism (the eponym of its founder, twentieth century American philosopher John Rawls) gets closer. Rawlsianism asks us to set aside individual moral interactions, to consider instead — from behind a “veil of ignorance” — what system would be the most to our advantage, given that we didn’t possess any information going in about what position we would occupy within it. The deep flaw in the American healthcare system would be plain as day to the Rawlsian, in that you wouldn’t want to go in either poor or working class.
Rawlsianism seems at first to chime well with the slogan, ‘you’re only as healthy as the least insured member of your society’. But how does it address the allocation of scarce medical resources? Rawlsianism frames the issue as a problem of opportunity, rather than one of access. If people are afforded the same basic level of opportunity, then the system as a whole will be just, whatever the outcomes.
An “opportunity” is defined as a user’s point of access with some service or good, be it hamburgers or healthcare. Unfortunately, Rawlsianism fails to account for differences in peoples’ individual capacities to convert equal opportunity into equal access to advantage. By shifting the moral calculus of distributive justice from the scales of liberty and equality to equality of opportunity, Rawlsianism tries to close the gap between too much welfarism and too much libertarianism. In other words, though it may help to limit brute utilitarianism by pairing them with an immanent criticism of systems, when it comes to the character of the systems themselves, the strict Rawlsian is devoutly neoliberal.
Neoliberalism and the Apparatus of Disability
On March 23rd, disability activists in three rights organizations — Disability Rights Washington, Self Advocates in Leadership, The Arc of the United States and Ivanova Smith (as an independent) — filed a formal complaint against the Washington State Department of Health, the Northwest Healthcare Response Network and the University of Washington Medical Center. In it, they argue that the triage procedures employed by these institutions are systematically denying treatment to people with disabilities. Medicaid means little so long as ableism and classism continue to exist on the emergency room floor.
Studies have shown that people with disabilities generally rate their quality of life much higher than it is perceived to be by either their doctors or the public. Yet many have argued as if the moral relevancy of quality of life judgements during medical rationing is self-evident. For instance, a set of guidelines published by the Italian College of Anesthesia, Analgesia, Resuscitation and Intensive Care designates the expected number of quality “life-years” remaining in a person’s life as a relevant moral consideration under its “wartime triage” procedures. Even when not done explicitly, triage can smuggle in quality of life judgements, particularly when “health” is nebulously defined as “well-being,” which is just a surrogate term for quality of life.
But the problem doesn’t emanate from the moral psychology of healthcare workers. The problem lies with the notion of “health” which proceeds down the chain from bioethics. Bioethicists have organized the concept of “health” around the normative ideals of freedom of choice and autonomy of the individual. But these ideals repeat the basic Rawlsian error, of failing to consider peoples’ different capacities to convert opportunity into access. The strict Rawlsian’s understanding of the ‘good life’ necessarily involves someone who is ruthlessly efficient at converting their opportunities into greater levels of access than others. The doctrine is radically ableist at its core.
The normative ideals of health espoused by each of the three mainstream bioethical theories happens to coincide with the ideological, political and economic imperatives of neoliberalism, capitalism and ableism. Feminist philosopher of disability Shelley Tremain has argued that these constructions participate in an “apparatus of disability,” which perpetuates ableism by naturalizing impairment as an individual and/or biological deficiency, rather than as a societal and/or political one. Disability is normally approached morally as a case of “brute bad luck” — something that should be fairly compensated, but which nevertheless exempts some from equal moral status among individuals. The implication is that people with disabilities are deficient in autonomy, hence freedom, which is why they are medicalized — to be ‘normalized’ according to these ideals.
The apparatus of disability suggests that these constructs overlap with the political projects of capitalism and neoliberalism, which seek to justify the prevention and elimination of disability.
Demystifying “Brute Bad Luck”: Austerity and Moral Conjuring Tricks
Decades of neoliberal policies of privatization and austerity have transformed public sphere institutions into major vehicles of profit for the big banks and private insurers. In hospitals, these policies have led directly to shrinking the numbers of beds relative to the population, reducing the numbers of healthcare workers relative to other hospital staff, and to employing “just-in-time” supply systems for required medical resources, like ventilators and masks. These supply systems are pushed by business consultants in order to streamline stockpile efficiency (which is market-speak for not keeping surplus resources lying around unused).
Despite being lionized for his efforts as a “#resistance hero,” New York Governor Andrew Cuomo helped get the state into this mess, by overseeing a decade of cuts in healthcare spending and Medicaid reimbursements. These policies aren’t new, nor are they unique to New York. If it is brute bad luck that prevents people from attaining equal access to potentially lifesaving treatments, then maybe it is just more brute bad luck that more people couldn’t be saved, that New York is in crisis, that so many frontline hospital workers are falling ill, and so forth.
“Brute bad luck” is like a moral conjuring trick. It has a funny way of absolving us of guilt in moral interactions that involve the complex work of systems. But by providing a metaphysical cover for the amorality of systems, the notion of luck contaminates moral reasoning. In this case, it is nothing but a thinly-veiled attempt to naturalize systematic discrimination.
If there is something slightly taboo about criticizing the healthcare system during a global pandemic, perhaps it is because we are still pessimistic about the outcomes of criticizing a system from which there appears to be no way out. Disability criticism is often dismissed through a similar sort of pessimism toward social change. “After all,” writes Joseph Stramondo, “‘none of the above’ is not one of the choices available for the Trolley Problem.” He is commenting on the apparent impasse of disability criticism in the face of COVID-19 triage protocols. Stramondo provides both key insights and concrete advice, starting with the idea that we should scrap “any criterion that deprioritizes people with specific disabilities as a group.”
The Right of Refusal: Re-imagining Public Health
Though the tragedy of the allocation problem has been reported to death, fewer have considered the demands of organized labour from a medical ethics perspective. When is a frontline hospital worker’s duty to provide care outweighed by their right to refuse unsafe work? A prospective answer could be: when the contradictions in the system make one to be a condition of the other. Solidarity in refusal is also required. A cascade of individual refusals can bring the system to its knees without creating any kind of change. But collective refusal can reshape the dynamics of the very ethical question at hand. While it won’t produce resources out of thin air, it may effect a more egalitarian distribution of access to health, and a more just politics for tomorrow.
We need to ensure not just the health of individuals, but the health of society as a whole. This means creating a sustainable economic system, which is powered by an inclusive grassroots democracy. Only by building solidarity between frontline hospital workers, disability activists and the working class as a whole can we struggle for this system, as the same time as radically reshaping the way we conceptualize both “public” and “health.”