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Wednesday, July 1, 2020

COVID-19 and Quality of Life

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.

AMA Journal of Ethics, Ethics Talk Podcast Transcript - Disability Community Perspectives on COVID-19 Episode: Disability Community Perspectives on COVID-19 Host: Tim Hoff Guests: Alice Wong and Joe Stramondo, PhD
HOFF: The criteria according to which scare resource allocation decisions should be made almost always include a reference to “quality of life.” Because quality of life is subjective, however, and because we’re so often wrong, as the data suggests, about how we judge other people’s satisfaction with their own lives, quality of life-based criteria can be hard to apply uniformly and equitably and justly. Many have argued in various ways that using quality of life as a criterion is the first step on the slide down the slippery slope to eugenics, and there are very good reasons to take the merits of these arguments seriously. In fact, at least some parts of the federal government seem to be doing so. For example, the Office of Civil Rights in the U.S. Department of Health and Human Services reminds us—and I’m just going to quote this here for the sake of clarity—that, “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances based on the best available objective medical evidence.”
WONG: And you know, I think, again, when we think about quality of life, I think all of us need to really question and unpack that term. Because I think for a lot of people, maybe listeners of your podcast, may think that quality of life means a life that’s without suffering or pain or without impairment or one that is independent. And you know, there’s a lot of values that are underlying there of what we consider normative bodies and functioning. And I think so much of this flies in the face of the huge range of human variation and the way that people thrive and adapt with the bodies we have and with the environments that we’re in. And we also can’t separate what’s different about our bodies and the society that we live in, the communities that we’re a part of. I believe that if people had access to the supports and technology that they need, and if people are treated with respect and accepted as they are, quality of life would look very different from the very strictly pathological lens.

STRAMONDO: I think that Alice is spot on in her discussion of quality of life and sort of the intersection between disability and one’s environment as being sort of the thing that determines quality of life. It’s not just about the presence or absence of disability itself. But looking at the language used in the complaint, I do have something of a concern in that it’s prohibiting explicit kinds of discrimination that might be sort of written into guidelines. But the fact of the matter is, a lot of times, the discrimination that might be going on when you’re talking about triage isn’t this overt, right? And so, that’s my real worry here. For instance, the best available medical evidence is what we’re supposed to make the determination based on. Well, the problem with language around the best available medical evidence is that a lot of times, people smuggle in quality of life considerations by talking about health, right, in that they equate quality of life with health, right?
Alice was just talking about how there’s this assumption that you need certain things to be part of your life in order to have quality of life. And for many, many people, health is one of those things. And so, when you write guidelines that direct physicians and triage committees to look at the best available medical evidence, that’s a vague term, right? That’s a very, very vague set of terms. Does this allow a triage committee or a state writing a set of guidelines to consider someone’s health status when considering whether or not they get life-saving treatment? And that’s, in some circumstances or by some interpretations, a real problem. If you are talking about health status in a way that what you mean is well, I’m going to consider how responsive this person will be to this treatment and whether or not this treatment will be futile for this person, then of course, that’s definitely some objective medical evidence that you want to consider when doing triage. But if what you’re saying when you talk about health status is something more along the lines of well, I’m going to prioritize this person who, after the treatment, will be healthier than this other patient who still will be disabled and unhealthy after the treatment, then that’s just sort of talking about quality of life considerations just using different words.