Bioethics Forum Essay
Diversity and Solidarity in Response to Covid-19
Covid-19 imposes burdens in different—but very serious—ways on different individuals and groups. We see this when patients with cancer and other severe conditions must have needed procedures delayed to slow the spread of infection or manage shortages of protective equipment. We see it when family members are barred from visiting sick or dying patients. And we also see it in policies that address what to do in the face of shortages of scarce resources—ICU beds, dialysis machines, or most visibly, ventilators.
We aim to highlight two factors. First, there are many ways that individuals’ ascribed identities–the groups into which they are placed by virtue of biological or social characteristics–might expose them to, or protect them from, harms from Covid-19 or policies that respond to the pandemic. Second, people who share an ascribed identity may have different opinions, casting doubt on categorical assertions that individuals with certain identities are harmed or benefited by specific policies. We focus, in particular, on identities related to disability, although many of our points also apply to other groups.
We begin by challenging a common claim—that people with disabilities as a group will be harmed by triage policies that consider patients’ prospect of medical benefit. Recently, this claim has been powerfully stated by Eva Kittay:
Triage protocols are enacted to maximize benefits. The benefit here is presumably to save as many people as possible. Yet benefits are not free-floating goods to be readily counted. Benefits attach to people. So, who is benefited, and who decides what a benefit is or when it is maximized? The benefits are unlikely to benefit disabled people, and surely not people with intellectual disabilities.
We agree with Kittay that maximizing benefits is an overly broad policy and that only some kinds of benefit matter in the face of life-threatening shortages. In particular, we agree with Kittay, and with the guidelines being adopted in many states, that judgments of quality of life should not be the basis for allocating scarce medical resources. Relying on such subjective, unreliable, and often biased judgments would indeed harm most patients with disabilities. But we think Kittay’s claim that saving “as many people as possible” is “unlikely to benefit disabled people, and surely not people with intellectual disabilities” is mistaken. People with intellectual disabilities would surely not benefit from the triage criteria withdrawn by the state of Alabama after a formal complaint by disability rights groups, which denied ventilator support to patients “with severe or profound mental retardation.” In contrast, they would benefit from triage criteria like those adopted in Pennsylvania, which focus on maximizing lives, reject categorical exclusion based on disability and quality of life judgments, and require an individualized assessment of capacity to benefit. Patients with intellectual disabilities would fare better under such a protocol, which does not treat cognitive functioning as a relevant factor, than they would under unguided clinical judgment or a first-come, first served rule. This is especially true for people with disabilities who live in group settings vulnerable to outbreaks, who would benefit from having more ventilators available. We should not assume, as Kittay appears to, that they would be less likely to survive under a lives-maximizing policy.
Kittay is not unique in making this sort of assumption. The New York State ventilator guidelines similarly err in claiming that re-allocating ventilators from long-term patients would mean that “none of the survivors would be from the disabled community.” Very few people with disabilities require long-term ventilation, and if nursing home ventilators could benefit patients with acute needs due to Covid-19 (an unclear proposition) people with disabilities would be among those potentially benefiting from re-allocated ventilators. This prospect does not suffice to justify re-allocation—some ventilators may be “part and parcel” of an individual and wrong to take even to save more lives. But it shows that generalizations about disability are the wrong basis for either triage policies or critiques of them.
Once we get beyond the mistaken generalization that all triage policies are bad for all individuals with disabilities, we see a variety of positions. Some disability advocates and people with disabilities endorse the goal of saving more lives, even when they believe doing so will reduce their own chances at a scarce ventilator. Others argue that we should maintain a first-come, first-served approach, even when this costs lives. In contrast, some disability advocates reject first-come, first-served. Still others argue for finer distinctions: that we may consider probability of survival, but not quantity of resources used, or that we may consider six-month life expectancy, but not five-year life expectancy. Ultimately, the importance of treating people with disabilities as individuals, and the rejection of stereotyping, applies to views about triage as well as medical assessments. Much as people with disabilities can’t be assumed to have limited prospects of benefit, they can’t be assumed to have similar views about triage. Both involve disrespectful stereotyping and overgeneralization.
Ari Ne’eman recently offered a different argument against lives-maximizing criteria in this blog. He recognizes that triage will not uniformly impact people with disabilities. Nevertheless, he argues that people whose disabilities do not limit their prospect of benefit owe a duty of solidarity to others with disabilities that should lead them to reject triage approaches that consider the duration of time someone will be on a ventilator, or other differences in prospect of benefit between patients with different disabilities.
Even if we were to grant the overriding importance of solidarity, it is unclear that it favors first-come, first-served. People who would have a lower prospect of benefit or need more time on a ventilator might instead have a duty of solidarity to people with disabilities who can benefit but are more likely to become infected. But, more importantly, requiring solidarity rather than stressing the individualized assessment of each patient’s prospect of benefit is a troubling departure from one compelling goal of disability advocacy: ensuring that each patient is seen as an individual and is not stereotyped by virtue of their disability status. We should not force the person whose disability doesn’t limit their prospect of benefit to be treated like others whose disabilities do limit their prospect of benefit, simply because both patients share the common ascribed identity of having a disability. Solidarity must be freely chosen, not imposed by triage policies.
The demand for solidarity would be questionable even if disability were an individual’s only ascribed identity. But like everyone else, people with disabilities have multiple identities contending for their loyalty. They are young or old, poor or affluent, members of one (or more) ethnicities or nationalities. The differential impact of a triage policy on some of those identities may differ sharply, and an expression of solidarity with one identity may conflict with an expression of solidarity with another. For example, a policy giving priority to younger people would favor people with life-shortening disabilities and disadvantaged people in general, whereas a policy that rejects the use of age even as a tie-breaker would be better for older people. Given these sorts of conflicts, what does solidarity require of an individual who lives in a family or community with many poor, disabled, and elderly people? There is no obviously correct answer. To insist that she must display solidarity with only one identity–that of a person with a disability–denies her moral agency. And it wrongly treats disability as a “master status” that overrides other identities. Ironically, the demand for solidarity calls for people with disabilities to embrace for themselves what they have rejected when imposed by society: the treatment of a single attribute – their disability – as defining.
Some instead argue that triage guidelines should protect the vulnerable. But moving from an argument based on solidarity to an argument based on vulnerability does not uniquely favor one triage policy over others. The most vulnerable are not necessarily, or even typically, the least likely to benefit from Covid-19 treatment, though they may be especially likely to contract Covid-19. Further, the most stigmatized disabilities–intellectual and psychiatric disabilities–are not the ones that most limit patients’ prospect of benefit from Covid-19 treatment.
Ultimately, there is a compelling case for regarding the goal of saving more lives as legitimate for triage, one that does not require—and is inconsistent with—strict utilitarianism or a focus on abstract efficiency. Nonconsequentialists have argued that saving more lives when not all can be saved recognizes the equal significance of each person, or that it comes closest to realizing our obligations to treat all with equal beneficence. Many religious bioethicists, as well as secular ones inspired by Kantian or Rawlsian ideas of equality, endorse saving more lives. And laypeople from diverse communities endorse saving lives as one of the most important goals of triage policies, while rejecting first-come first-serve and random selection.
That triage policies are justified in saving more lives does not eliminate the importance of narrowing disparities and addressing disadvantage. There are many ways of striving to reconcile these two goals, including avoiding categorical exclusion criteria and quality-of-life judgments, and “reserving” some scarce treatments for disadvantaged people who are likely to benefit. These are better ways to address disparities than abandoning the goal of saving more lives.
Govind Persad, JD, PhD, is an assistant professor at the University of Denver Sturm College of Law and a Greenwall Foundation Faculty Scholar in Bioethics, Twitter: @GovindPersad. David Wasserman, JD, MA, is a visiting research scholar in the Department of Philosophy at University of Maryland at College Park and is co-editor of the forthcoming Oxford Handbook of Philosophy and Disability; he identifies as disabled.
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