As medical rationing becomes a reality, "quality of life" measures threaten disabled people like me.
Technology, accessibility, and a hardcore will to live shaped me into a cyborg oracle ready to spill some hot truths. I am tethered to and embedded with a number of things that keep me alive: a power wheelchair, a non-invasive ventilator that is connected to my chair’s battery, a mask that goes over my nose attached to a tube, metal rods fused to my spine. How I sound, move, and look elicits pity and discomfort by many in public. This is the norm.
My family and I have been sheltering in place for over three weeks in San Francisco. As news warnings of overcrowding in hospitals and scarce resources push hospitals to consider rationing care, I’m deeply concerned. Already, disability rights groups have filed complaints that some states, such as Alabama and Washington, are making triage recommendations that discriminate against people with disabilities. While the federal health department’s Office of Civil Rights released a bulletin on non-discrimination during the pandemic, I’m still worried. The ethical frameworks for rationing often put people like me at the bottom of the list.
Bioethicists and philosophers like Peter Singer, a utilitarian philosopher infamous in the disability community as someone who advocates for our erasure, have applied cool, rational, elegant arguments and thought exercises on who should live and die during crises like this. But where are the disabled doctors, bioethicists, and philosophers in this global conversation?
the state directives at issue (some of them anyway)
“I can explain a few of the specific examples that we saw that were the subject of these complaints. So for example, in Washington state there were some protocols that specifically recommended that in the event of a shortage of resources that triage teams should consider transferring patients with quote-unqoute a loss of reserves in energy, physical ability, cognition and general health to be transferred to outpatient or palliative care out of the hospital, in other words to stop receiving life-saving treatment.
There was another protocol that overall survival, which we are prioritizing, and our goal is to maximize overall survival, we are defining that as not just surviving the treatment, recovering from the treatment for COVID-19, but healthy long-term survival. In other words, you know how good is your life going to be? How healthy is your life going to be? Regardless of whether or not you can make it through the treatment. And how long is your life going to be if you can make it through the treatment. and they acknowledge that this representssurvival of young healthy patients more than that of older critically debilitated patients.
In Alabama what we saw was a triage plan specifically for the use of ventilators in a shortage. And that specifically singled out people with intellectual disabilities, for purposes of rationing ventilators. What it said was hospitals should not off ventilator support in the event of a shortage for people with quote-unqoute severe or profound mental retardation, moderate or severe dementia or severe traumatic brain injury. So again, those folks, regardless of their ability to recover from the treatment, to be able to benefit from the treatment for COVID-19 were being excluded and deprioritized for the treatment because of essentially what their lives were deemed to be like, either lower quality or shorter duration. Afterwards.
Kansas had a plan that actually was based on a plan from New York that would actually reallocate or take away ventilators from people with disabilities who use those ventilators on a regular basis for a disability. So if you went into the hospital and used a ventilator on a chronic basis that you might actually lose that ventilator, it might be taken away, and given to somebody else who was deemed higher priority than you for a COVID-19 treatment. And obviously people who lose their ventilators tend to die. Because they can't breathe.
So again, without an individualized assessment of that person's prospects for recovery, it simply would reallocate the vent. And also actually excluded people, certain people, from treatment based on things like advanced untreated neuromuscular disease, people with certain forms of cancer and others.
And so again, disability-based exclusions regardless of an individualized assessment of how that person would fare in recovering from treatment.
In Tennessee, there were guidelines that excluded people with advanced neuromuscular disease who require assistance with activities of daily living or require chronic ventilatory support from getting critical care, including COVID-19 treatment. In the event of a shortage. And people with traumatic brain injury and certain other folks also based on disability diagnoses would be excluded. So those were the kinds of things we were seeing. Those were four states. Those are the ones that we filed the complaints. There are similar policies in some other states. And I know a number of states are actually in the process of developing those protocols right now. But those are the kinds of concerns that Sam was talking about where the consideration is really not about whether somebody can recover and benefit from treatment but, you know, how we value their lives and what we think of either the quality of their life or how long we think they are going to live in the long term.”
Imagine 50 people. At one point, every single one of them will lose the ability to breathe unassisted. They will need a ventilator for, say, two weeks. And then they will be able to live for years and years. Of course, they should go to 50 graves before risking the 1 person who was lucky enough to get a ventilator before those 50 arrived in the hospital... Are you empathizing so strongly with 1 person from your tribe that you are dismissing the pile of people who will need to be killed for them?
well, *you’re* being weird and rude
“people aren’t fungible most of the time but then they are” has a very crappy track record, nonny
and “people aren’t fungible most of the time but then they are” is how, factually, things tend to go
(why is “build more ventilators” not an option in this thought experiment)
Medical providers must not engage in “ruthless utilitarianism” in deciding who gets lifesaving treatment for the coronavirus, a federal civil rights officer warned.
The director of the federal health department’s civil rights office said on Saturday that his office was opening a series of civil rights investigations to ensure that states did not allow medical providers to discriminate on the basis of disabilities, race, age or certain other factors when deciding who would receive lifesaving medical care during the coronavirus emergency.
The office released a new bulletin on civil rights during the coronavirus crisis, days after disability rights advocates filed complaints arguing that protocols to ration lifesaving medical care adopted by Alabama and Washington State were discriminatory.
“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” Roger Severino, the office’s director, said in a news release. “Persons with disabilities, with limited English skills and older persons should not be put at the end of the line for health care during emergencies.”
See, I’m... well, I’m not going to say it’s impossible I’m using the terms incorrectly, given that I fled the academy screaming in 2007 or so, but they both do seem to be used this way in common parlance.
@roseapprentice No, but I will continue to try to understand. TBH my impulse when reasoning from empathy is value the lives of us disabled people less because we suffer more. I value our lives equally for more cognitive reasons. Sorry, I know that's a really frustrating response.
Huh, that makes sense when you describe it, but... did you notice how the utilitarian anon kept throwing nasty asides at me about how i must only value disabled lives as I do because I myself am disabled and that is my in group? That’s what I always thought the divide was here:
Empathy: oh no we can’t let that person on a vent die! Poor them!
Lack of empathy: We ran the model, and it says more people live that way. Take it.
Empathy is the one from what I understand that runs the risk of overvaluing individuals (I’m taking a bit of a break from Against Empathy rn but I will get back to it, and it sure seems to be what Bloom argues) which is from what I understand why some lower empathy people think of themselves as superior at morality. They’re more able to see lives as interchangeable, which you have to do to be properly impartial.
But I don’t think that kind of impartiality actually *is* more moral, which to me is the heart of the disagreement. It’s immoral to prefer people you like to people you dislike (though that makes almost all of us a little immoral!) but it’s not immoral to care about groups, especially when those groups have been disproportionately mistreated historically.
And that for me is the heart of the discussion. Is it a mental blip, an error of evolution, to think FUCK NO DONT TAKE SHANNON OFF HER VENT, or is it a fundamental and intense manifestation of our moral instincts?
I have a clear answer to this, but it’s one a lot of people in this discussion seem not to like.
Even in a crisis, doctors should not abandon the principle of nondiscrimination.
States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble.
Some plans single out particularly severe conditions, like Alabama’s decision that people with severe or profound intellectual disability “are unlikely candidates for ventilator support” or Tennessee’s listing people with spinal muscular atrophy who need assistance with activities of daily living among those excluded from critical care.
....People with disabilities have a long and complicated history with the medical profession. While many disabled people need ongoing medical care, many doctors view life with certain disabilities as unworthy of living. Disabled people who require ongoing ventilator care and other forms of expensive lifelong assistance are used to being asked by medical professionals if they would rather abandon life-sustaining treatment — often with the clear implication that “yes” is the right answer.
When my friends with some of these needs go into the hospital, even under normal circumstances, those of us who love them try to organize lots of calls and visits. These aren’t just to keep the patient’s spirits up. They are designed to send a message to treating professionals: “Someone cares if this person lives or dies. You are being watched.”
...This idea is both straightforward and concerning: Patients with disabilities may require more resources than the nondisabled. In a crisis, the nondisabled can be saved more efficiently. As a result, when doctors must choose between a disabled and a nondisabled patient with similarly urgent levels of need, the nondisabled patients should get priority, since they will recover more quickly, freeing up scarce resources.
Adopting such an approach would be a mistake. Even in a crisis, authorities should not abandon nondiscrimination. By permitting clinicians to discriminate against those who require more resources, perhaps more lives would be saved. But the ranks of the survivors would look very different, biased toward those who lacked disabilities before the pandemic. Equity would have been sacrificed in the name of efficiency.
.... In 2015, the New York State Department of Health developed guidelines on how to allocate ventilators in a crisis. Among other things, they permit hospitals to take away ventilators from those who use them on an ongoing basis in the community or at a long-term care facility if they seek hospital care. Not only is this a concerning precedent, it also interferes with the trust in the medical system that we need to combat the virus: Chronic ventilator users may have reason to avoid seeking needed hospital care if they become infected, based on a well-founded fear of being sacrificed “for the greater good.”
....I spoke to a colleague of mine, Alice Wong of the Disability Visibility Project, on these issues. As a 46-year-old who uses a ventilator on a regular basis, she has a lot at stake.
“My vent is part of my body — I cannot be without it for more than an hour at the most due to my neuromuscular disability. For clinicians to take my vent away from me would be an assault on my personhood and lead to my death,” Alice writes. “I deserve the same treatments as any patient. As a disabled person, I’ve been clawing my way into existence ever since I was born. I will not apologize for my needs.”
....She is correct. To allow discrimination against the disabled, even when there isn’t enough to go around, is simply wrong. Disability advocates are mobilizing to defend this position — on Thursday, the American Association of People with Disabilities sent a letter to Congress urging “a statutory prohibition on the rationing of scarce medical resources on the basis of anticipated or demonstrated resource-intensity needs.”
....At its core, these debates are about value — the value we place on disabled life and the value we place on disability nondiscrimination. When Congress passed the Americans With Disabilities Act 30 years ago, did it do so as a form of charity limited to times of plenty? Or was our country serious about disability as a civil rights issue? Charity can end when resources are scarce — civil rights must continue, even if doing so imposes a cost in time, money and even lives. People with disabilities have an equal right to society’s scarce resources, even in a time of crisis.
Many states and hospitals are relying on the use of Crisis Standard of Care plans to inform providers how to make decisions on the allocation and re-allocation of scarce medical resources. These plans should be carefully scrutinized to ensure that people with disabilities are not subject to discrimination.
This guide, which accompanies guidance from disability and healthcare organizations that expands on a Bulletin from the Department of Health and Human Services’ Office of Civil Rights, is designed to help advocates and policymakers ensure that Crisis Standard of Care plans and other documents providing criteria for the allocation or re-allocation of scarce medical resources comply with federal disability rights laws.
We identify six questions to ask when evaluating Crisis Standards of Care plans and other allocation criteria, and how particular allocation criteria amount to discrimination or risk being discriminatory.
Does the plan include categorical exclusions on the basis of diagnosis or functional impairment?
Does the plan include implicit or explicit quality of life assessments as an allocation criteria?
Does the plan include long-term survival beyond the acute care episode as an allocation criteria?
Does the plan permit allocation or re-allocation on the basis of anticipated or documented duration of need?
Where the plan incorporates short-term survival probabilities, does it do so in an individualized fashion consistent with available standards of evidence?
Special Consideration for Chronic Ventilator Users
“Bioethicists tend to be utilitarians, which means they’re trying to maximize efficiency above everything else” —person on the medical rationing related webinar I’m on right now
...I’m really starting to get the strong sense tumblr uses the word in a very idiosyncratic way to make it easier to ignore stuff like this.
Which is weird, because you can’t get more applied ethics than “so do we try to save the disabled people or do we let them die?”
