by Joseph Stramondo, PhD
Bioethicists and physicians scrambling to develop triage protocols for the COVID-19 crisis might have been surprised that counsel from Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), and The Arc of the United States (The Arc) filed a complaint recently with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) over their concerns regarding disability discrimination in some of these protocols. Perhaps it is easy to dismiss such concerns as mere naivete that does not recognize the inevitability of the hard choices that are coming down the pike in the United States. After all, “none of the above” is not one of the choices available for the Trolley Problem. Such a dismissal would be a serious mistake. I think those working on protocols would do well to pay attention to the critiques of bioethical reasoning being made by disability activists now, as well as those that have been made consistently by disability studies scholars that have engaged with these issues in a substantive way.
I have been asked by several clinical bioethicists what sorts of triage criteria would satisfy the disability critiques of these protocols. As with most questions in bioethics, there is no easy answer. Of course, just because there may not be a perfect, non-discriminatory set of rationing criteria, that doesn’t mean there aren’t better or worse ways of doing triage. Let’s review some of the triage criteria that are on the “worse” side of ledger.
First up would be any criterion that deprioritizes people with specific disabilities as a group. A recent New York Times op-ed by Ari Ne’eman brings our attention to these kinds of protocols, like Alabama’s Emergency Operations Plan that would deny ventilators to folks with severe or profound intellectual disabilities, or Tennessee, where those with spinal muscular atrophy who require help with activities of daily living would be denied treatment in a pandemic.
I would argue that this sort of criterion is clearly grounded in a deeply biased quality of life judgment. Unlike supporting a patient’s right to request the withdrawal of life sustaining care or even assistance in dying, denying patients care on the basis of a non-terminal disability is not justified as a way of respecting a patient’s judgment about their own quality of life. Rather, the reason such a person would be denied lifesaving care via triage is because a third-party judge like a physician or policy maker does not believe their life has enough quality to be worth saving in comparison with that of non-disabled others. A person’s self-assessment of their own well-being is deemed irrelevant in the context of triage and, thus, I would argue, any third party assessment of well-being should also be deemed irrelevant.
Of course, there is a significant body of empirical evidence showing that there is a substantial gap between a disabled person’s self-assessment and how their quality of life is judged by folks that have never experienced their disability. Some prominent bioethicists even refer to this as the “disability paradox.” To me, there is little paradoxical about disabled people valuing their own life more than it is valued by non-disabled people making judgments based on stereotype and stigma. To conceptualize it as paradoxical is to wrongly assume that disability inevitably diminishes well-being. This assumption is a central tenant of what Amundson calls the “ideology” of ableism because it grounds the notion that the disadvantages of disability are intrinsic and inevitable, rather than socially constructed and subject to amelioration via social intervention like civil rights laws.
Some triage protocols avoid singling out particular disabilities that are presumed to make life barely worth living. For example, the “Material Resource Allocation Principles and Guidelines” from the University of Washington Medical Center, which form the basis of the HHS OCR complaint, seems to avoid this rationale. However, the concept of “health” is used, instead, as a proxy for quality of life. This might be even more problematic, because it is not as obviously dubious.
In my view, this reliance on an allegedly objective and unbiased concept of health is the biggest flaw in the University of Washington’s guidelines. This protocol explicitly commits itself to utilitarian principles as the basis of triage and then states, “Greatest good, in a protracted clinical situation such as the COVID-19 outbreak, is generally considered maximizing survival of patients with COVID-19 . . . Overall survival may be further qualified as healthy, long-term survival, recognizing that this represents weighting the survival of young otherwise healthy patients more heavily than that of older, chronically debilitated patients.” This should be read as an attempt to smuggle in a quality of life criterion for triage because health is meant to equate to well-being.
It might be thought that health should be considered during triage because a healthy person is more likely to survive than someone who is “chronically debilitated.” We don’t want to waste scarce resources on people who will not survive, even with treatment. However, this clearly is not what the University of Washington protocol calls for. Likelihood of survival and general health come apart conceptually and they also are parsed here in this protocol, which is adding health as a criterion on to the criterion of likelihood of survival. In other words, the way this protocol is worded does not aim to maximize survival of everyone, but of people who will be “healthy” after receiving treatment.
It may just be that the UW protocol is recommending that people with a bad prognosis for overall survival, separate from their experience with COVID-19, are deprioritized. Maybe all that is being recommended is that folks with, say, pancreatic cancer should not receive aggressive treatment because, even if they have as good a likelihood as anyone else of surviving the virus, they are not likely to survive much longer after that. However, health and disease are, of course, very broad, vague concepts in medicine. Would these guidelines from University of Washington recommend withholding critical care from someone who is “chronically debilitated” because they are blind or deaf or have achondroplasia or have a spinal cord injury? Without further specification (i.e. language about having a near-term terminal diagnosis), it seems that many things could disqualify someone from treatment because they will not be healthy, even after they recover. Why would this be the aim, if it wasn’t being assumed that health equates to quality of life? Such an assumption would not just ignore the self-assessment of many disabled people, but it would also dismiss a rapidly growing scholarly literature that argues it is simply false to believe that disabled people tend to be worse off.
In sum, one core argument against some of the emerging COVID-19 triage protocols is that they are discriminatory against disabled people when they use criteria that deprioritize them because of a belief that their lives are of less value because they are of less quality.