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Thursday, April 9, 2020

Triage Ethics

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of ventilators.

At,  Joseph Stramondo argues against giving lower priority in lifesaving care to people with disabilities.
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.
At Crux, Robert P. George speaks to Charles Camosy about the current COVID-19 pandemic.
Some protocols for rationing limited health care resources focus on the relative need of patients and their relative chances for getting better. Others focus on things like age, cognitive ability, and physical capacity. What sorts of ethical considerations should guide hospitals, medical groups, and other institutions who are trying to decide how they will distribute their limited medical resources?
At the core or foundation of the answer to just about every important ethical question is the principle of the profound, inherent, and equal dignity of each and every member of the human family. In making decisions — including hard, even tragic, decisions about distributing limited medical resources — it is critical that we treat every person as equal in inherent worth and dignity to every other person.
We must avoid the temptation to treat some as superior (and others as inferior) because, for example, they are young and strong (rather than old and frail) or able-bodied (rather than physically disabled or cognitively impaired). The temptation to discriminate invidiously will present itself — about that I’ll give you a money-back guarantee.
Some people will want to throw over the radical egalitarianism (all human beings are “created in the image and likeness of God”; “all men are created equal”) of the sanctity of life ethic and replace it with a “quality of life” ethic that is amenable to decision-making by utilitarian calculation. We must be firm in our resistance to anything of the sort.
If some institutions decide to ration health based purely on age or disability, might they face lawsuits for violations US civil rights law?
Yes, our federal civil rights laws (as well as many state statutes) forbid discrimination based on age or disability. To its credit, the U.S. Department of Health and Human Services’s Office of Civil Rights, under Roger Severino, has already spoken forcefully about the applicability of these laws when it comes to the care of patients and the allocation of health care resources. I’m glad they are getting out ahead on these issues, because, as I noted, the temptation to discriminate invidiously will come.
Some people will say, “why should that Down Syndrome person be given a ventilator when it could be given to someone who’s not ‘retarded’ and who can contribute more to society?” A fully sufficient answer should be: “because in fundamental worth and dignity, the Down Syndrome person is every bit the equal of any other person.”
But for some people, that will cut no ice. But here is an answer that will: “Because federal law forbids discrimination based on disability and you or your institution will be sued or prosecuted if you engage in such discrimination.”