By LISA EISENHAUER
June 30, 2020
When it comes to how lifesaving resources such as ventilators should be allocated if they become scarce during the COVID-19 pandemic, ethicist Sean Aas says allocation policies shouldn't put those with disabilities at a disadvantage. In his view, it would be "morally unacceptable to leave some people with no chance of receiving the resources they would need to live, at least not on the basis of their having a disability or chronic condition."
Aas is a senior research scholar at the Kennedy Institute of Ethics at Georgetown University and an assistant professor in the university's department of philosophy. His primary areas of research are bioethics, meta ethics and social and political philosophy with a significant focus on issues of disability. He shared his thoughts June 18 during a webinar titled "Disability Discrimination and COVID-19," part of a series on Catholic ethics and the challenges of the pandemic co-sponsored by CHA and Georgetown University in cooperation with the Pellegrino Center.
While noting that the general goals of medical care are to extend life and to improve health and quality of life, Aas says those goals offer little guidance to clinicians making critical and potentially life-and-death decisions at the bedsides of patients with severe cases of COVID-19.
"What the clinicians should have is a policy that's been developed either at the governmental or the institutional level which can guide them in making allocation decisions so that the responsibility for the difficult ethical judgment isn't placed solely on their shoulders," Aas says.
Aas focused on the effects on the disabled as he critiqued the four general ways that people have discussed allocating scarce resources during the pandemic. He made it clear early on that he doesn't know what the best policy for allocation is. "Spoiler alert: I don't have the right principles," he said. "I'm going to tell you something about which principles we should reject and why, and especially concerns that the disability community will have about proposed principles for health resource allocations in this context."
Among the principles that Aas sees as likely to disadvantage those who are disabled would be health maximization. This principle calls for extending life as many years as possible and it involves metrics that are adjusted for how healthy those extended years are expected to be. Conditions such a blindness factor into the metric and lower the rating, he says.
"Applying this metric, if you had to choose between saving the life of a blind person and a sighted person, who would have equal life expectancy if they get the treatment, this health or quality maximization metric is going to tell you to save the life of the sighted person because that's producing more healthy life, understood to be the goal of medicine, than saving the life of a person who's going to be unhealthy one way or another," Aas says.
Aas says this framework is unfair to people with disabilities because it says their lives wouldn't be as good as the lives of healthy people and that a disabled person's life is of less value than that of an able-bodied person.
Conversely, Aas says, some people advocate giving priority for scarce resources to the "worst off or neediest." This principle requires subjective judgements about who is better or worse off, he says. Generally, disabled people don't see their lives as better or worse than the lives of able-bodied people, just different
Given that, Aas says, "this idea of giving resources to the needy first, isn't going to do any good for people who are deaf or have other disabilities of that nonlife-worsening-kind because they're not necessarily going to be amongst the needy."
This framework, he says, also could mean that limited resources would go to those who are unlikely to get much benefit from them, such as people with several chronic conditions that are likely to shorten their life expectancy or correlate with poor outcomes or death from COVID-19. "I think there are various reasons why we wouldn't want to go too far in the direction of a kind of bleeding heart, just-give-everything-to-the-people-who-are-the-neediest principle," Aas says. "It's going to in some ways just be wasteful."
Survivability is another principle that could be used to allocate scarce medical resources. This approach says that when there are not enough resources to meet demand, preference should go to those more likely to survive "a given episode" with the help of those resources. "This seems to many the wise way to steward those resources," Aas says.
This principle, however, has shortcomings, including that it doesn't take into account the projected quality of life of people after survival, he says. It also could give those who are already disadvantaged by a chronic condition but who have a significant chance of survival with ventilation and almost no chance without it little prospect of receiving that care, Aas says.
"Even in the dire circumstances where some people are, in the end, not going to get treatment, there's some intuitive pull to the idea that everyone should have a shot at getting treatment," he says.
First come first served
Aas said allocation policies also could be based on a principle of "first come first served." One of this principle's advocates, a disability rights activist named Ari Ne'eman, made a case for this approach early in the pandemic in a New York Times opinion piece.
"No judgment is made about their likelihood to benefit or their quality of life or anything like that, it's just are they the next person in line," Aas says.
He says it's not clear that policies based on this principal would be in the interest of people with disabilities or fair to them. "Disabled or otherwise disadvantaged people often have difficulty getting prompt access to care, even just getting to the hospital, especially in pandemic conditions, when mobility solutions may be limited and working imperfectly," Aas says.
In addition, basing allocation policies solely on this rule could mean that people with disabilities or chronic conditions who were especially careful to avoid contagion but fell ill with COVID-19 when the pandemic was widespread could be disadvantaged if all of the high acuity resources, such as ventilators, are in use, Aas says.
Morally dubious vs. innocuous
In sum, Aas says allocation policies that are morally dubious need to be distinguished from those that are morally innocuous. For example, he says, it would be dubious to discriminate in health care allocation on the basis of how healthy someone is in their life irrespective of the course of their COVID. However, he sees it as morally innocuous to base allocation decisions on who will benefit more from treatment than those who will benefit less.
"I don't think we can do without this idea in medicine, when we have some kind of scarcity, that we want to use our resources where they'll be most beneficial, but this is a matter of taking into account what kind of change the treatment is going to make in someone's quality of life as opposed to taking in to account how high their quality of life is irrespective of the treatment," Aas says.
Though he says he has no pat answer to how to formulate an allocation policy for scarce resources that leaves no one out, Aas says he doesn't think the answer is to use a first-come-first-served policy but instead perhaps "some kind of judicious use of randomization or lotteries."
"I wish I knew what that was, but I don't," he says. "I think that's something that we could all think and talk about, how we might construct policies that use randomization or lotteries to distribute scarce resources in a way that isn't distinctively discriminatory against disabled people or other groups that we would want to be careful not to disadvantage."
The webinar series will resume July 2 with a discussion on "Ethical Trials and Tribulations of Evaluating New Therapeutics." To attend, register here.
Prior coverage of this webinar series
Nursing homes can counter pandemic's toll on older Americans, ethicist says
On whether to publicly identify COVID patients, Catholic ethicists can disagree
Reasoned action is needed to restart clinical training for medical and nursing students, ethicists say
Surveillance tools offer great promise, perils amid pandemic, ethicist says
Constraints of pandemic care are potential triggers of moral distress, ethicists say
Crash course: Sully offers inspiration for applying organizational ethics in a pandemic
Resuscitation considerations go beyond patients amid pandemic, Catholic ethicists say
Putting workers first for some treatments amid pandemic is justifiable, ethicists say
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