[GLENN COHEN] Okay, let’s get started. I’m very happy to welcome you to a virtual event by the Petrie-FLom center. I’m Glenn Cohen I’m a professor at Harvard Law School, an expert on health law and bioethics, and I’m also the faculty director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics. We are still experimenting with the Zoom format, so hopefully this will go smoothly, but we ask that you bear with us for any technical glitches So before I talk a little about the content today just a few ancillary announcements. First of all, I want to let you know that starting today on the Petrie-Flom website we are launching our COVID 19 resource page. It’ll collect all of our scholarship, commentary, and events on COVID 19, along with a top 10 list of our most relevant and helpful materials. It’ll be available under the resource tab. Also I’ll let you know to put on your calendar that on April 22nd at noon we’re hosting ethical dilemmas in mask and equipment shortages, looking at the shifting standards around PPE best practices, the duty of providers to take care of patients, the duty of institutions to provide safe work spaces for health care workers, and the structural forces behind all the PPE shortages, and reflections from frontline emergency department nurses at a COVID 19 hospital. And you can register for that event on our website. For any Harvard 1ls, 2L’s, 3L’s, graduate students our call for the 2022-2021 student fellow applications are now posted online, please reach out to myself or to others if you have questions but we’re excited to welcome another class of student fellows in the coming year. Okay, now on to the main event, this event is in support of our forthcoming book Disability, Health law, and Bioethics, which we published this month by Cambridge University Press. The book came out of our 2018 annual conference exploring the framing of disability and the impact of this framing has on medical and legal policies. And you can find information on how to order the book on our website. We also though want to recognize the efforts of our co-editor Anita Silvers who sadly passed away last year Anita was an amazing scholar and a wonderful colleague We were just so lucky to have her to guide this book as one of her last projects and we miss her very very much For this event we’re not going to be taking questions through zoom instead we’re going to be pulling questions from our Twitter feed, so if you’ve got a question, and I hope you will, you can tweet it at #DisabilityCovidTriage once again #DisabilityCovidTriage – all one word. And we’ll be monitoring that hashtag, and pulling questions to ask all of our panelists. Unfortunately we’re not able to provide live captioning for the event, but we’ll be posting a version of this event complete with captions within one to two weeks, it’ll be freely accessible. Okay, now let me introduce our amazing panel, I’ve instructed them all to speak for no more than 12 minutes and unfortunately they go over, they will interrupt them, they’ve been told this, so just to warn you. First we’re gonna have Govind Persad, who’s an author of a chapter in the book, he’s an assistant professor at the Sturm College of Law, University of Denver , University of Denver, and Greenwall Foundation Faculty Scholar in Bioethics After him will be Leslie Francis also an author of a chapter in the book, she’s the Alfred C. Emery Endowed Professor and Distinguished Professor in the College of Law distinguished professor of philosophy, an Adjunct Professor in Family and Preventive Medicine internal medicine, and political science, a lot of departments Leslie at the University of Utah then we have Michael Ashley Stein a co-editor of the book and also a chapter author. He’s the co-founder and executive director of Harvard Law School’s project on disability and a visiting professor at Harvard Law School. Finally we’ve got Omar Sultan Haque, who’s a chapter author, he’s a faculty member of the Department of Global Health and Social Medicine in the program in psychiatry and the law at Harvard Medical School, and the co-director of UNESCO chair in bioethics, American unit. There each going to speak and then I will convene us back together for questions, including questions from you the audience on Twitter. And with that Govind we’ll let you take it out, take it away from us. [GOVIND PERSAD] Great. Thank you, thanks Glenn and thanks to everybody here for joining us and to the Petrie-Flom staff for all of their work Before I get into the legal and ethical issues and I am going to talk about today, I want to make a couple of just more general comments.The first one is that this coronavirus situation makes me angry and makes me scared and makes me sad, and I I’m suspecting a lot of you feel the same way as I do. I’m angry because I don’t want it to be relevant which of two patients gets a ventilator, I want to be here in Denver watching other people like Michael, like Glenn, like Omar live in Cambridge talking about their issues in disability

that are inescapably relevant, and what the New York Times has reported to say about the federal response shows that this didn’t need to be this way, that it could still be better if we had competent people in charge on the federal level. I’m scared, because I’m scared that my one and a half year old isn’t gonna get to see his grandparents… who have disabilities again I’m scared for them and I’m scared for him. And I’m sad because people are dying. We probably all have different things we read that make us sad or upset when we see this, I’m seeing the headlines about the 11 pages of obituaries in the Boston Globe. I was reading two nights ago about of women in Michigan whose husband and her only son both died three days a part of coronavirus and so if I might sound more emotional sometimes about some of this and might be expected from this time of talk that’s that’s why. So with that said I’m going to try to start with some slides that frame the legal and ethical issues that I’m gonna turn to talking about law and about advocacy, so I’m gonna share my screen now to share some slides here, so the first slide here on the left side, this is a slide that tries to separate the criteria that I think are legal in pandemic triage from the criteria that are not legal. So on the left side I think the criteria that are legal, but include considering evidence-based decisions about a patient’s probability of surviving treatment, evidence-based predictions about the quantity of resources used, and evidence-based predictions about short-term life expectancy. This isn’t just my view it’s also based on the view of Wendy Hensel and Leslie Wolf in an excellent piece they wrote for up Plos currents they’re currently that I think in Errol Dean and provost in Georgia State. Some people disagree with this slide Firstly, Senator Warren signed a letter saying that relative probabilities of surviving treatment shouldn’t matter unless the probability is tiny and something that I’ll call minimal triage for now professor Francis and I will talk about this that Sam Bagenstos Ari Ne’eman and others endorse, I wouldn’t allow considering how long somebody is expected to be on a ventilator even with evidence or whether you’re likely to survive for one or five years beyond hospital discharge I think these positions misread the law I think they’re not ethical. So as an example consider cancer, late stage pancreatic cancer, this is in terrible disease, it has a 3% five-year survival rate that means ninety seven out of a hundred die in five years. That should matter a condition like late stage pancreatic cancer is really different from other disabilities, really different from something like deafness or chronic pain and disability law shouldn’t treat those conditions deafness and liyan stage pancreatic cancer in the same way. I highlighted in yellow here two areas where I think law and ethics may come apart I think law permits consideration of longer term life expectancy, but they’re good ethical reasons to worry about long term life expectancy being shaped by social injustice and that relate to issues I talk about in my chapter for the book. I think the law probably prohibits considering quality of life where these considering what we call quality-adjusted life years, but we may discuss rare cases where that would be ethical to consider Professor Nir Eyal’s chapter in this book is about this and Leslie and I may talk about that as well. And then of course on the right side some of the areas that I think are clearly not legal and not ethical would be evidence supported arbitrary determinations or discriminatory animus decisions motivated by dislike or fear of people with disability is the sort of thing that our Supreme Court talks about and condemns in a famous case called on Cleveland v. Cleburne Living Center. I will go now to my second slide here. So this next slide press responding people who say well saving your lives that’s just efficiency, that’s just utilitarianism. I don’t think that’s right I don’t think saving your lives or requires is saying something like the people with disabilities are in any way less worth saving and these quotes up here from two really well-known ethicists who spent a long time actually as it happens in Cambridge. The top left is from the philosopher Derek Parfit who passed away I think a couple of years ago and this is the bottom right quote is from Francis Cam, who some of you may have taken classes with, she was for many years at the Kennedy School and is now at Rutgers. And the idea behind both of these is that if we give equal weight to saving each person, we should try to save more lives. I mean I think that’s a goal that goes through COVID response I’d think postponing surgeries, that’s

really bad for some people but it saves more lives overall. So I’ll go to another slide now. This is about why I think duration have used, how long somebody is predicted to be on a ventilator can matter. You might be able to save for people with a ventilator over four weeks or save only one. You may be wondering why somebody is in a blue box on this side, so because… among the four people you save, you know, a quarter of people in the US have disabilities so when you’re saving more people you’re also likely to be saving more people with other disabilities, disabilities don’t effect probability of surviving on ventilation, disabilities like deafness that I mentioned before. So I’ll go now to my next slide which is about why probability of survival matters. So here again, if you look at this slide, look on the left side If you’re looking at for people with a 75% probability of survival, if you consider probability of survival in allocating ventilators you’re likely to save 3 people, as opposed to predicting to save only one. If you save with the probabilities as they are on the right side and this is about relative probabilities if you change this to it 30 percent versus 10 percent probability of survival the same thing applies I didn’t have room on the slide for 10 people, the same sort of reasoning applies. It’s gonna be important to distinguish concerns that you might have about how to fairly predict probability of survival from the argument that probability of survival number of lives saved doesn’t matter. My objection is to the latter argument. I suspect that there ways that we can improve, make more fair or probability of survival judgments but I don’t think we should throw out the relevance of that concept, than throw out the relevance of saving more lives. I’m gonna turn now and stop my screen share and go back to some comments about law and advocacy. So if you all are able to stop this share… I’m actually, I’ll just do about here, that’d be great. So why are the criteria that I’ve argued are ethical to consider (probability of survival, short term life expectancy) why are those not only ethical but legal to consider. A couple of points here. The first one is if we think about lung allocation. When we allocate another here… the scarce resource lungs here, we do look at probability of survival and it’s short term life expectancy, and those are considered to be legal but allocating scarce lungs to patients in need. On the second is case law, so even when we apply the ADA to medical decisions the few cases that do apply the ADA in medical context, what they do is they strike down groundless judgments.They say you can’t make a decision on the basis that one of them is about a doctor who said oh all deaf patients are high-risk I won’t treat of deafness the same as others. The ADA upholds factually grounded predictions and even though there are disputes about those predictions. And the case law says also the a ADA does not entitle each patient to the level of healthcare precisely tailored to their particular needs, it allows considering how a policy would affect other people, and it doesn’t require accommodations that burden other individuals as opposed to the sorts of accommodations we’re more familiar with that may require businesses to spend money. I’ll now turn to some comments about disability advocacy rather than law, and they connect with law but I think they go beyond law. The first is that, so people with disabilities often have interests that align in advocacy, but here I think we reach a reasonably potential conflict because the vast majority of disabilities hearing, sight, intellectual disabilities they don’t affect whether you’ll survive being on a ventilator or how many resources you’ll use if you get COVID 19. Most people with disabilities don’t have late-stage lung cancer, they don’t have severe emphysema. Some people have argued triage is still unacceptable even if it saves more people with disabilities because people with disabilities they say need to be in solidarity. This is an argument that makes me mad The goal of disability laws should be to help people with disabilities and to avoid stereotyping, it shouldn’t be to mandate solidarity So Sam Bagenstos who doesn’t make a solidarity argument he says look I’m not hiring a blind bus driver, that’s the case where it’s legitimate to consider a disability. Solidarity doesn’t mean that a disability with a driver with a psychological disability where the chronic pain should be banned for driving the bus just because of blind driver rightly is. Solidarity means the blind driver should be supported and getting a different type of job that wouldn’t be limited by their disability, if the government doesn’t provide that support and other people with disabilities when to protest that’s fine but they shouldn’t be forced into solidarity. The same thing is true for ventilators the goal should be to protect somebody who doesn’t have a good chance of survival from getting coronavirus. We should be trying to protect say people in assisted living facilities. We shouldn’t be trying to require doctors to ignore difference

of the prospects, if people do get Corona virus. People also say I’m okay with banning triage going first-come, first-serve going to lottery even if it costs more lives. I’m not okay with that The proposals I’m seeing from some disability groups would cost the lives of many people with disabilities because they would mandate that states and hospitals ignore differences among people with disabilities. This is the opposite of what disability law I think should be doing. Saving more lives among people with disabilities even if it creates some inequality between people with different disabilities, that’s when we’re important than restricting the use of medical evidence, so that we can ensure that everybody has an equal but higher chance of dying irrespective of their specific disability. I think it’s more important to save more lives of people with disabilities I also think it’s important for advocacy not to prioritize a visible over invisible people. People who think they’ll get lower priority under triage they can offer personal stories. People who lose their lives under a random selection under a lottery they’re likely not aware of that, they’re unable to respond to these kinds of personal stories. I worry that getting rid of evidence based tree hundred harm most disabled people even if I protect a few who are more visible. The last thing I want to say is that it bothers me to see advocacy inviting the same federal officials at HHS who killed people by mismanaging the initial response to COVID 19 to now control to now set policy about how other people respond to scarcity that they produce. HHS says in their statement about discrimination that they leave no one behind I don’t think advocates should take that at face value. The way HHS should… has manage things has left a lot of people behind, has left some of those people who were left behind dead Instead of advocating for HHS to make these rules I would love to see disability advocacy, I’ve seen this is happening. Work to support evidence-based guidelines that are responsive to public input by the Maryland, by the New Jersey guidelines and to work to make sure these guidelines are free of bias free of unsupported assumptions about disabled patients. So that closes my comments, thank you all so much for your time and I’m looking forward to your questions and to my other panelists [LESLIE FRANCIS] So let me start by thanking Govind because I’m going to be critical of some of what he says, and also thanking everyone at the Petrie Flom and everyone listening for really raising these enormously difficult and truly tragic issues. So in my talk I’m gonna focus on three points first why I think Govind’s analysis is wrong about whether proposals that would triage minimally, that is, let near term survival count but not anything else are problematic from the perspective of equality. Second why the maximize lives saved approach arguably does violate the ADA and to make this argument I’m going to use a distinction between modifications and accommodations that Anita that Anita and I, Anita Silver’s, who I regret so much is not here, that Amina and I developed in our contribution to this volume and in some other writing. And finally I’m going to look at how an understanding of the difference between accommodations and modifications can be deployed for accommodations of healthcare workers, which is another issue we shouldn’t forget. So minimal triage says that in prioritization decisions we may only consider the short-term likelihood of surviving COVID 19 itself, along with the probability of surviving very near-term life-limiting illnesses Parenthetically, I would suggest that there probably are not very many patients who have good short-term survival prospects and good prospects of surviving COVID 19. I would… that I would guess that if you have poor short-term survival prospects, you also have a poor chance of surviving COVID 19. Govind says that equality requires maximizing lives saved because this would maximize the percentage within the population of people needing ventilators, who get saved. This aggregates people

into an overall figure of life saved it doesn’t increase the probability of any individuals life being saved, just the probability of lives saved across the collective. Another model of equality disaggregates, considering equally each person’s chance of being saved. This is the model I favor ethically as respecting each as an individual. That is, you can’t infer from the aggregate that we give each person within the aggregate the aggregate chance of being saved So Govind doesn’t, I think, have the high ground on equality. Now to the law Alexander v Choate, decided by the court under the Rehabilitation Act in 1985, thirty five years ago, considered Tennessee’s decision to limit its Medicaid patients to fourteen paid hospital days per year, no matter their conditions or whether they would need fifteen days to get well and as Tennessee had a policy that was like you only get so many days on the vent, the court said that policies with a disparate impact on people with disabilities could violate the Rehabilitation Act but that this policy didn’t That’s like saying life year saved policies don’t violate the ADA even though they have a predictably different impact on older people. The decision has been taken to stand for what’s called the access-benefit distinction, that states are free to define the benefit like life years saved, and don’t discriminate if they give people access to the same benefit 14 days in the hospital, or so many days on the vent. According to the life years saved protocol. However, this conclusion is too quick about Alexander v Choate, and disability law more generally One problem made with it Alexander v Choate, which I’m going to skip over briefly, was that the plaintiffs in the court below made a very problematic record. They didn’t do a good job of actually showing disparate impact here, but the problem I want to focus on was that Alexander v. Choate magnified a mistake in an earlier case Southeastern Community College against Davis that confused accommodations with modifications. Let me explain. Accommodations which is what Govind was talking about, are individualized alterations that enable people to participate in activities, employment, programs, and so on. People who are capable of such participation with the accommodation. Familiar examples of accommodations are economic keyboards, screen readers, or sign interpretation Think of them as equipment that enables individuals to exercise their particular capabilities. Modifications change world or policy designs that have functioned to exclude in ways that can be changed without fundamentally altering activities or being unduly burdensome Modifications potentially benefit each of us. Think of curb, cuts, ramps for telecommuting options. Accommodations gone too far are subject to the objection that they give individuals receiving them an unfair advantage, like you get to survive no matter how much you pig and others don’t. Modifications are subject to the concern that they are unreasonably burdensome But not that they unjustly bend the rules for some, but not for others. Now there was a problematic earlier case that gave rise to Alexander v. Choate, Southeastern Community College versus Davis. In that case a potential nursing student with hearing loss sought accommodations, such as placing instructors so that she would be able to lip read what they were saying. The college instead construed her as asking for the admittedly unreasonable modification of the nursing program to eliminate all clinical training and graduate her as a nurse. Davis was decided the same year the Supreme Court rejected affirmative action in Bakke, and the court misconstrued Davis’s request for affirmative relief as a request for unjust affirmative action that would allow an unqualified person to enter

nursing. Alexander v. Choate compounded this error. Here, the plaintiffs asked whether there were other ways to design medicaid cutbacks than a straight 14-day cutoff that would achieve similar fiscal goals without as great an impact on people with disabilities. They asked that is for a modification, but the court stated that they were asking for individual accommodations that were unjust affirmative action, guaranteeing each all the medical care they needed in preference to others. Although he didn’t use the words affirmative action, this is how Govind’s analysis of the law framed the disability critique that we’re hearing today. There’s potential for exactly the same mistake in the ventilator protocol discussions Disability rights activists are not asking for individual privileges that would give them rights to survive over others, they are asking for evidence based protocols that use individualized assessments of survival prospects, similar to those of others without disabilities who are using ventilators This may require modifications of ventilator allocation rules that would limit the number of days on the map for example. So if we think about what’s being requested, as modifications we can think about the kind of individualized equality design that I suggested rather than thinking about particularized accommodations that would be tailored to maximize any given individual’s right to survival. Now let me turn to apply this analysis to health care workers very briefly many health care workers have conditions that would place them at greater risk from COVID 19 than their fellow workers, or they have family members with such conditions. What accommodations are reasonable under such circumstances? For example, would it be a reasonable accommodation to allocate the highest risk procedures like resuscitation attempts to others without those conditions maybe not because of the burdens that would be placed on others performing the function. But if their risks to family members, perhaps paying for a hotel, in which the worker can isolate from family would be a reasonable accommodation. Another accommodation question is whether these functions are essential job functions that individuals must perform in order to be considered qualified for their jobs. We need serious thinking about these questions about accommodations that shouldn’t be lost in the very high-profile questions about ventilators Including whether we should be considering them through the frame of accommodations at all, rather than through thinking about what tragic circumstances require about modifying job responsibilities for everyone. Perhaps a reasonable modification in the worst of circumstances, where personal protective equipment is limited, is the decision not to perform highly risky resuscitations in cases where prospects for success or bleak. Thinking about the distinction between accommodations and modifications for healthcare workers, I conclude presses questions that we really ought to have been thinking about for everyone How can we create the best protection we can in the most just way, under our current circumstances of great horrific difficulty and ongoing injustice? Thanks very much [MICHAEL STEIN] Thank You Leslie and thank you everyone for joining us. It’s a pleasure to be with you, and I have another chapter that my great friend and colleague Omar will be speaking about in just a bit, so I will spend just a brief amount of time on the chapter with Matthew Smith and Tara Allison on sexual agency and

intellectual disability, and then pivot over to our discussion today of COVID The points that we make in the sexual agency chapter is that our society often uses regulations and assessments that treats persons with disabilities, in case of this chapter intellectual disabilities, differently by devaluating them as individuals. And we argue and show examples such as group homes requiring certificates of competency for people with intellectual disabilities, adults living on their own to engage in volitional intimacy whereas we would never ever consider that for the rest of the population over age 18. And as part of that chapter, we also argue that the architecture of intimacy, a idea that we take from our colleague and friend Elizabeth Emens, is a way of restructuring the way that we perceive people with intellectual disabilities and their sexual agency. That’s so much for the chapter, I’d like to pivot over to our discussion of COVID 19, and in doing so I’ll note very quickly that at the moment New York State is reporting three times the death rate for persons with intellectual and other disabilities living in group homes than of the general population, and that this should remind us that back in the days of the Spanish Flu 101 years ago Fernald Institution, which is about a 20-minute drive from where many of us are sitting and was the us’s first large-scale institution had a rate of eight times the average death rate for their inmates. And it’s important to highlight this because in the case of COVID, one has to wonder with all the guidance and their learning that’s happening every day what sort of accommodations are ongoing regarding persons with intellectual and other disabilities. So for example, are individuals with intellectual disabilities, if they get to see the ICU, and if they get to be intubated or ventilated are they being given instructions and easy-to-understand language – what is the effect on individuals who are on the autistic spectrum of isolation? These are issues that I haven’t seen very much on but also be raised. What we have seen though, and perhaps too much of, is guidance by several states prominently Alabama that explicitly excluded persons with intellectual disabilities, dementia and others, from being eligible for ventilators and other services. That guidance has now been rescinded by the Office of Civil Rights in Washington and thankfully so. One of the individuals who helped to precipitate that change is our friend Ari Ne’eman who is not joining us today in order to work on the practical side of things and who sends his regrets, but we have also seen formalized triage instructions, for example, by the University of Washington Hospital, the same ethics board that brought us the Ashley treatment wherein a young woman with intellectual disabilities had her sexual organs removed and was placed on hormonal therapy. And in under these guidance notes people with disabilities are far far down on the triage list. There are legal reasons rape touched upon both by Govind and by Leslie in different ways under the Americans with Disabilities Act and the Rehabilitation Act to believe that these are illegal, but I would actually rather focus for the minute on the politics both when inside outside utilitarian schemes relating to prioritizing limited resources in the health care setting and specifically in COVID and with persons with various disabilities. Utilitarianism which tries to get the greatest benefit for the greatest number, presumes that there is a limited resource amount available and then prioritizes within that amount Govind had touched upon this and wished as many of us do that there were more resources available for health care, but this idea of utilitarianism being efficient prioritizing resources is an absolute fundamental of public health philosophy and application, and it makes sense – what are you supposed to do as far as cutting up the pie? How does one cut up an existing pie? So I’d like to talk about the politics within

utilitarianism how we cut up the pie, and then I’d like to talk about the politics outside of and detached from utilitarianism which is how much of a pie do we have? Within the utilitarian schemes economists recognize that economic efficiency and other efficient outcomes sometimes are invalid from the social point of view, in other words, they may make sense from a dollars sense point of view they may make sense from a limited resources of energy and staff power point of view, but we decide as a society that we are not going to uphold those efficiency arguments. A fun example would be the closing down of racist cafes in a days of segregation in racist states where the businesses would clearly lose money, and yet even before title 7 we held that those were socially invalid preferences, we’re not going to uphold them. In a more economically, empirically evidence-based argument and it went before the Supreme Court we know that women cost more than men as far as their pension scores that’s because women live longer and yet companies and others cannot discount the pension rates of women, even though they will ultimately cost more because that is considered a socially invalid preference. We as a society push to the side socially invalid preferences for nearly every identity group except for persons with disabilities. Beginning in the 1990s when we adopted Daly’s Disability Adjusted Life Years, rather than QALYs, Quality Adjusted Life Years We determined in an empirically “neutral” and I put that word in quotation marks way that people with disabilities and their lives are worthless and cost more than people from the mainstream population. There are two problems with this. The first one is I wonder since the data initially used was the early 1990s whether it is accurate, if it ever was Second is even if we presume that this data and the calculus of DALYs versus QALYs is correct why is it a socially valid scheme? Why is it that we discount and set to the side other socially economically viable ,but are socially untenable would we for example explicitly points to the fact that white individuals in this country have higher income, education, social connections, social capital, and socioeconomic status than black persons in this country, hence, white people also be able to access healthcare in advance of black persons on the idea that they will have greater access to enforcing these benefits, live longer, and be able to access additional medical care and survive and flourish to a greater extent. We would never say something like this explicitly. We do implicitly use this rhetoric all the time because when people are in poverty, whatever color they happen to be, they have less access and less chance at health, but we would never say out loud that rich persons ought to be able to access health care and an advance rate over poor persons, although frankly some of the things that our administration has said certainly points to that idea, as in, the only individuals who have to worry about COVID in the words of our president are those who are elderly or not healthy. And yet here in the case of persons with disabilities and access to health care we absolutely prioritize non-disabled persons over disabled persons. I have a problem with that Putting aside this calculus of how one divides up an existent line, there is the point of why is it they have the size pie that we do and Govind touched on this a little bit in the beginning of this talk, referring to the front page of the New York Times. Resources are always limited. No country can print money for an unlimited extent and everyone has to do with budgets and allocations. And in this sense of course utilitarians in this point useful, but I would point out that how much of a resource we allocate reflects political priorities, and reflects social norms and what services, we want to belong to. So for example our

government has dedicated trillions of dollars to wreak havoc in the Near East, has dedicated trillions of dollars to risky banks and overly aggressive lenders and has done so at times when our seniors are living at a 25% poverty rate and we have a 20% in child poverty rate, our schools are going downhill and Social Security is teetering on the brink Another article on the front page at The Times is “Why can’t we as a first class society have a first class health care system?” Something that is staring us graphically in the face as we speak. To shift newspapers the front page of The Washington Post tells us that the tax change in a coronavirus package overwhelmingly benefits millionaires, and this will be about a 90 billion dollar package. This is at the same time that our federal government, the white house in particular quashed a 1 billion dollar contract for ventilators on the notion that it was too expensive. All these issues raised in dark and stark relief the question of “What type of society do we want to live in who do we value and who do we not value” and “What rhetoric do we attach to ideas of who is included and who is not included?” Most of all how do we get if we’re looking forward from a society of us and then to a society where there’s only us? Thank you very much [OMAR HAQUE] Hello, thank you all for your comments. I’m gonna start with a first few comments as a social scientists and then a few comments as a philosopher. So I side with Leslie on this that to treat people as individuals you have to look at their unique situations and their needs, not as aggregate abstractions with equal situations that we can just subject to utility maximization. I’m gonna give a particular example of that So imagine you have two people with the same pathophysiology, the same COVID status. One person is able to walk another person is in a wheelchair, perhaps with paraplegia. Now even if we believe that all people should have equal access to care there are certain biases that distort how we estimate the likelihood of the same treatment being successful and that person surviving, so my thesis is that when viewing disabled, we are facing even when facing the exact same medical facts clinicians are likely to systematically be less hopeful and too pessimistic about prognosis, treatment, success, survival, and underestimate resilience. And because of these facts that are part of the real world not the philosophical thought experiments of the utilitarian, we need to consider the unique situations of every person not aggregating across individuals. So the first bias that’s the present that Michael and I talked about in our chapter is ineffectual bias, so the presumption that the disabled are lower on agency or competence which will lead to clinical pessimism, I’m sorry, clinical paternalism. So there’s a lots of an emphasis on what the individual is experiencing, what their preferences are more likely to make decisions on their behalf. You can see how this be relevant in COVID. The second is a fragility bias so there’s a presumption that person’s disability can’t handle interventions as as easily. So there’s gonna be an increase in the perceived suffering and the severity of intervention of the symptoms and therefore resilience will be underestimated. Third, there’s a what’s called the saintliness bias or the presumption of being more friendly warm or poor social or trustworthy. This would manifest as maybe an implicit assumption that someone would be more likely to give up their respirator give up their life. Finally there’s a catastrophe bias which in which the clinician projects on to the person, the patient, the presumption of more suffering less quality of life and more mourning, the need to mourn Therefore, this will produce less hope for prognosis and less assumptions or resilience more clinical pessimism and more likelihood of thinking giving up And now when you’re when your own doctor is less hopeful, more pessimistic about prognosis and treatment success and survival and under estimating your own resilience, this is gonna have a huge impact which is not captured by any of this these abstractions, those philosophical abstractions. So now thinking as a philosopher, I’d like to just first start by asking us to think about when we say evidence-based or scientific or measurable it doesn’t necessarily mean it’s moral. These are all moral judgments baked into all these calculations or

presumptions that are totally moral, so don’t presume that when you hear this is a medically necessary or evidence-based calculation that it’s somehow neutral And the examples I gave, you know, above should should help us see that. But now what would it mean to really really consider that all people have equal worth and inherent dignity and have equal access to care, I would like to challenge that’s on a couple of fronts So… because the decisions we make not only are about the patient’s we treat but the kinds of people we become when we make those decisions. Consider what kind of a nation we would be what kind of moral injuries we were willing to sustain in making the decisions that we make about who is more valuable, who is dispensable is a homeless person really less valuable than a CEO? This, you know, is a philosopher or poet who’s not contributing to society as much economically or socially a less valuable than a banker or a politician. So, we should be making decisions based on whether treatments are likely to be helpful and the objective clinical state people are in the likelihood of medical benefit, not who’s more worthy of treatment so I agree with looking at total life saved, I disagree with looking at life years or long-term survival. In fact I find a contradiction in this bifurcation of quality of life and long-term survival or life years So how can how can you say quality of life shouldn’t matter in making decisions, but we’re going to care about life years a long term survival. I mean it seems like both of those are on the spectrum of some kind of you know utilitarian thinking, so the first challenge is to think about the fact that one’s productivity in a market or ability to contribute to society really should have no impact on one’s being more deserving of care even if we prioritize the lives of healthcare workers you know there’s a presumption you hear in the culture that their lives are somehow more valuable, there they’re not more valuable right? And I would challenge us to think are all healthcare workers more deserving of a rest greater than all non health care workers? How about the scientists who are studying these questions? How about the politicians leading the administration? How about the scientists studying questions that cause more mortality than COVID like heart disease? Are they all more worthwhile… are they’re all more worthy of a respirator? I think I’m very skeptical of this. And finally I would the second challenge is what would it mean to give a preferential option to the most needy and vulnerable as opposed to assuming this you know some kind of utility maximization. So if the Coronavirus itself is engaging in age discrimination it’s doubling the chance or could you plan the chance of one dying if one gets it if one’s old or disabled – why are we, why would we double the discrimination? If it’s more likely to kill the elderly, why shouldn’t they get a priority in our caregiving? Why shouldn’t the disabled to get a priority care giving? Why not priority have prioritized those lives since they’re the most vulnerable? And finally two cultural comments. One, I hear a loss of distinction between killing and letting die, so if we choose to save who we can while mourning those who cannot save this is not the same thing as choosing who will live and die So this distinction that sort of justifies euthanasia and positions physician assisted suicide it’s sort of creeping into the background here, so it’s really important for us to realize that decisions to save some people are not choices to kill others. And that matters morally and culturally. And then finally to echo what Michael said why you know… the all these dillemmas are really not ethical dilemmas, they’re unethical dilemmas. So the real ethical dilemma is how to change our social conditions prevent these tragic choices and situations from emerging and persisting in the first place. We shouldn’t fool ourselves into thinking that the optimized utility algorithm is the solution here, it’s an unethical tragic situation. And so, we should have romanticized these kinds of solutions that if we just get the calculus right we’re going to solve this problem. You know just like anything that has happened in wartime situations and the Holocaust where people have to choose between which of two children to let live but let’s focus on the real issue here, the real ethical issue. Thank you. [GLENN COHEN] Okay, so now we’re at the part of the day where we’ll have some questions, I already have two questions from the Twitter feed, but I’m going to start with a question of my own If people have more questions remember just post it on the Twitter feed, using our hashtag. So the question of my own and hopefully we can get those other videos up, so we can see everybody when we’re when they’re answering. The question I want to start with especially two legalistic questions. The first has to do with the definition of disability under the Americans with Disabilities Act and the Rehab Act, and so I’m curious about your reviews about disparate impact for people whose life years are affected by medical conditions, but who

do not qualify as being disabled under the Americans with Disabilities Act the rehab Act, and the question of major life activity. So it seems to me many of the things that might affect likelihood of survival will not count as disabilities under the ADA and how you square… whether you think the application of these triage protocols to groups of people who are disabled within the meaning of the act is different than those outside, so that’s one question and I’ll let people jump in in a sec. The other question I want curious about has to do with actually whether the opposition to life years as a metric of allocation, extends for you far beyond a ventilator triage in that for example lung allocation which the pit protocol is based upon is based heavily on survival. Actually all the organ allocation protocols our based, at least to some extent on anticipations, of life years and what’s interesting is that that is a protocol that has been more or less if explicitly blessed by HHS, and their work So I’m curious whether your view is if you’re right about ventilators under the ADA and the Rehab Act that also means that our current organ distribution system is unlawful, so people can jump into one or the other and then we’ve got a bunch of questions from the audience after that. [OMAR HAQUE] I would say if there’s a minimum threshold by which people could agree on life years for organs of leaving it you know above that threshold would be a wide-open space where we wouldn’t come down on any number. [LESLIE FRANCIS] So I mean I’ll jump in. I would agree that we actually have thinking to do about organ transplant allocations, and you know one of the points that people are making is that it is important to think about not only COVID as exceptional, but to think about it in the context of what we could learn and how we might rethink other areas of our practice. I do want to say something about disability in the first question that Glenn asked The amendments of the ADA Amendments Act, were designed to extend the definition of disability, well, or to extend how we construe how we interpret the definition of disability, generously. So that’s one point don’t get sucked into thinking that who qualifies as disabled under current interpretive views of disability in the ADA is very narrow The second thing I would say is that the the ADA prohibits nomination on the basis of disability, and so there’s a question about whether the what it focuses on is the definition of disability and who gets to be special that way or whether it focuses on the question of what is discrimination on the basis of disability. I have you know in a bunch of things interpreted it in the latter way although there aren’t questions about the extent to which it is a categorical statute, even a very broad one Michael’s thought about that too and might have some things to add on that point [MICHAEL STEIN] Well agreeing with with my friend and co-author colleague Leslie, I would also add that regardless of the technical crisp definition of disability either under the ADA the ADA Amendments Act or a broad view of the rehab act Glenn’s question goes to a very good social policy question, which is there is a population of individuals who even if they do not rise to the level of technically being included in a disability category still have impairments that often mirror some of those disabilities and still are in need of social services, including access to healthcare. Leslie and I and our late wonderful friend Anita wrote about that in Chicago as it related to employment and accommodations, but the same is true for the healthcare area and for other areas. And as a matter of social policy it is part of the reason why we’ve seen

this huge inflow over the last ten years since the 2008 downturn onto the social security roles of individuals who are older have lost their pensions have impairments, but whom one side of the political ledger points to as welfare cheats, and the other side of the political welfare spectrum points to as individuals requiring insurance and other forms of benefits, that’s a big social policy We can call them people with disabilities and dependencies if that makes it easier to address the cohort. [GOVIND PERSAD] And I have a thought on the second question, which is that I think it’d be really useful to be clear about what we mean by minimal triage and think about that in the lung allocation context, so I think I’d be useful to differentiate… I thought Omar’s comment was really helpful about differentiating maybe shorter term from longer term survival, and I think it’s important for the lung allocation protocol it focuses on shorter term, I think the one of the main things looks at is about within say a year, some others look at five years. Some of the disability advocacy documents have seen take a much more limiting position on this. One letter for instance says any non tiny difference in survival probabilities has to be ignored, and so I’d be interested in knowing whether folks here think that you have to ignore differences in survival probabilities itself because that seems like a much starker distinction that would definitely cause problems for lung allocation if you couldn’t say differentiate a 10 from a 50 percent probability of survival I don’t think ten is a tiny probability but I think it’s something that’s worth differentiating and taking into it account. [GLENN COHEN] So let’s hold your thoughts on last questions Govind for one sec, you can answer in the next round we have now about ten questions of the key, so I want to get through at least a couple of them The first one is professor… from Professor a study from the Syracuse University learner-centered show people with IDD are more susceptible to COVID 19, due to being sensitive to pneumonia. How does this intersection between devalue disability and health conditions affect your critique. [GOVIND PERSAD] I mean I think this underscores the point that Professor Stein and I both made that you have to look at the background conditions that are causing a scarcity as well as that the scarcity itself. I think one driver of this may be through the situations that we’ve been seeing in… if people are not able to be in the community who have IDD that there are these failures in limiting the spread of COVID in some settings where those folks if you especially likely to be. [GLENN COHEN] Anybody else want to jump in? [LESLIE FRANCIS] Yeah I mean it’s noticeable, you can you can make a general point that there is a problem about survivability, even just minimal survivability, that background social determinants of health, and background conditions are going to be baked in We’re seeing that with race, the intellectual disabilities question raises that question, and I mean to me what that says is we really need to be thinking more generally about the injustice in our society. [GLENN COHEN] Terrific, so now I’ve got a pair of questions that I think go together, so I’ll ask them both one is from Phoebe Hong was a student fellow the Petrie-Flom Center she says if states are setting guidelines for evidence-based medical judgments for triaging COVID 19 care, how do we account for variability in policies across states and is that permissible? So that’s one question about variability across states. The second is from Carly Zubrzycki who’s a Climenko fellow of the law school, what role is fear of litigation playing in the creation of triage policies? At an operational level does a more individual approach like Professor Francis’s end up putting the onus of resource allocation on individual practitioners and is that good? So heterogeneity, fear of litigation, devolution to the bedside, what do you all think? [LESLIE FRANCIS] Well I’ll start out on that since I was named in that second question. I… what I see going on at the bedside is application of criteria not selection of the criteria, so that doesn’t really speak to whether we’re dealing with fear of liability here, but it it speaks to where I think the decision ought to be made. I

don’t think you can avoid clinical judgment at the bedside. What I think you can do is caution over and over and over again against the biases that have been documented in such application of clinical judgment. On the federalism question federal anti-discrimination law sets a floor, and states can vary and I I’m actually working on a book right now on federalism and issues in bioethics, that is going to be coming out from Oxford in probably about a year, depending on how quickly I get to it. But one of the questions that I think is just enormously important is to what degree can we tolerate as a decent society, states that leave vast percentages of their population without health insurance at all. And this is a version of that same question to what extent can we tolerate variations in justice about an important, a really important decision. [GOVIND PERSAD] I think it’s clearly important that all states comply with whatever the law is. I think it’s important to have a clear understanding of law. So one thing I found really interesting and I wasn’t sure about in Professor Francis’s comments is in terms of the doctrinal state of what the law actually is. I can see the case for critiquing aspects of some of the past case law, but I think it’s important that in States making their decisions they’re guided by what the law actually is, and I do think there’s actually room for states to legitimately difference with these issues. I think Maryland for instance did a process of public gathering… public views about fairness in their state I think Minnesota did things like that that were similar and I can see a case for states to legitimately differ about some of the ways they designed their triage policies This is agreeing with Omar those aren’t sort of decisions just for doctors. These are sort of public decisions and as long as those decisions comply with federal anti-discrimination law, I think it’s legitimate and proper just as other public health decisions do for these kind of decisions to be made at the state level and to vary in some ways between states. [MICHAEL STEIN] I’d like to chime in by saying that in response to some of these questions that by and large you know my opinion is that health care providers are trying to do the best they can. They’re under enormous stress. They’re being absolutely heroic but some of their decisions are being influenced by clinical biases that Omar and I have written on, and by social biases as well. So when Govind speaks as well about states being able to prioritize, I agree with him to the extent and he does draw the line at being you know contrary to ADA or other discriminatory laws, it’s very interesting that when they did it in Oregon many years ago and held it open to public opinion, people disabilities are so far down on the scale that Bush Bush one administration invalidated it So we need to be careful about how social biases get included in all these neutral sort of metricizes and going back to our friends the DALYs you know I’d like to ask the question how many people with disabilities were included in the focus groups, panels, or as researchers and coming up with these numbers. Because I would bet an awful lot amount that you’d wind up with a different metric, if you included the stakeholders and their perspectives. [LESLIE FRANCIS] So let me add one more point about states varying States have expertise, the question isn’t can states vary but on what issues and on what grounds and how much. So we’re seeing another example potentially of state variance right now the governors of the West Coast states and the East Coast states where they have knowledge of local conditions. That is very important, and they have a kind of expertise. I mean, I think what Michaels really emphasizing is that there are floors that we think in a society in which we all live together no state ought to go below. [GLENN COHEN] Excellent, so I’m going to throw in another two questions out at you one is from Gabrielle Katz, where do you see room for the most immediate progress? Should there be more state work, all the feds work on this issue? So a little bit connected to the federalism but this question of what to do tomorrow if your concerned this issue. Another is from

[audience name] are there any reported cases in practice of people with disabilities being denied COVID 19 treatment on the basis of disability? Anybody want to speak to those either reported cases or what should you do today if you’ve been inspired by this panel if this is a pressing issue if you get involved in, what do you say if you do after this panel? [MICHAEL STEIN] Well I think it’s going to be a little while before we see the reporting of cases and I hope that we’ll see less overt discrimination and exclusion and more, although now we’re starting to see reports of various places including China about how people with disabilities not just ID have been treated. But as far as a federal or state response, I would note that our wise president has declined to have a czar or an individual who is capable and competent a coordinating responses coordinate and be capable and coordinating responses. So far as attention besides lauding himself daily on his press conferences, has been to take away the individual who would oversee the disbursement of the stimulus package, but we don’t have a response. So thank goodness we have some very capable innovative governor’s mayor’s etc., but unfortunately they’re in competition with each other for scarce resources, rather than being able to coordinate together. And that I think is costing many many lives. [LESLIE FRANCIS] So I would say the question about cases, it’s really important where we look so a lot of the things that I would consider serious discrimination are not happening at the point of who gets on the vent.They’re happening at the point of who gets testing who gets transferred. Who shows up at the hospital. And there are a lot of reports about very problematic differences in that respect that I think one needs to look at and if I were gonna move forward, I do some disability rights work as a lawyer, I represent people who are the subject of guardianship, I would think very seriously about our policies about nursing homes in the United States, about inspection about paying staff living wages so they don’t have to moonlight in the way they currently moonlight. And there’s a lot more to say about that. [GOVIND PERSAD] I think it’ll be really valuable for people to… this is an issue that’s going on live right now in hospitals for governors for local communities and for senators if you think some of these characters should be considered or shouldn’t you should write to them and say that if you think, with me for instance, that it is important to give consideration to probability of survival in order to save more people, you should say that because some of the proposals say you should ignore that factor. If you think I believe with all of us that we shouldn’t consider sort of quality of life determinations, and then you should write and say that. I think it’s really important to keep clear the question of whether guidelines should include quality of life determinations, but I think we all think they shouldn’t from the question of should we look at probability of survival, should we look at say one year life expectancy. A lot of senators are signing letters saying things that would imply you shouldn’t be allowed to differentiate the pancreatic cancer patient from somebody with a very different disability and I think if you agree with the view that those patients are different there’s also room for saying that to your Senators, to your governor while differentiating that from quality of life. [GLENN COHEN] Excellent two more questions. One from Daniel Aaron who is a student fellow to at the Petrie-Flom Center and this is about the relationship of what you’ve said to age discrimination. If ventilator should not be allocated based on life here is this logic apply to allocating ventilators to people of different ages, is that age discrimination? And from Charlene Lerner how do state policies granting immunity to healthcare workers interact and fare under the ADA. So one is age discrimination one is these immunity statutes that are being passed at some of those states. [LESLIE FRANCIS] So on the straight life years the answer is yes, it would apply. The question which is worth a longer

discussion than we have time for here, is whether there is an argument that applies in the age context that doesn’t apply in the disability context. Which is the so-called fair innings argument that is whether you’ve already gotten to play to your last strike in the ninth inning versus… so where you are in the life cycle. And whether that’s an independent question that ought to give us some reason for saying that. Age at least at a particularly advanced stage can count. I don’t favor that view because I think innings are not equal… there are a lot of people who get to older ages who have had horrible links and the fairings argument needs to take that into account, but that’s a topic for another day [GOVIND PERSAD] I’ll say something just quickly about age discrimination so I think it’s really important to understand the difference between the different statutes here. The Age Discrimination Act is very different from the Americans with Disabilities Act it contains specific exceptions for state and local statutes that consider age it contains a carve out that pertains to cases where age is being used as a proxy, and I think there are good reasons for that. I think age is something that is going to be different from disability in terms of being subject to biases, there are ways in which being say 75 that’s just a fact that you’ve lived through 75 years of life, in a way that a lot of judgments about disability are going to be more subjective. As to the argument about quote-unquote fair innings I don’t we use the fair innings terminology, I don’t find it very helpful, but I think the idea of what’s called a lifecycle principle that folks like Daniel’s for instance at Harvard defend I think is morally compelling. I think if you look at the Maryland guidelines again when they did public assessments a lot of people in the public including older people thought look it’s… it’s bad for anyone to die but there’s something especially unjust about somebody losing the rest of their life say thirty versus eighty and I think I see the point about with some people who are older may have lived lives that are very challenging but I think getting into that would get us into quality of live determinations that I think we’re exactly what we want to avoid, so I think there is a compelling case for using the sort of lifecycle considerations that Norm Daniels and others talked about in the Maryland group. [OMAR HAQUE] Govind, one response to that is if you look at the the judgment people make often times people will say that the life of a young child is less tragically lost a fifteen-year-old dying, so it’s not a linear assessment of innings or years and they’re totally, who knows why that is there’s probably some bias in looking at the very young as well, so I I’m suspicious of that [GOVIND PERSAD] Yeah, I’m not defending linear assessment. I’m just saying it seems to me like a factor that is legitimate to consider can be considered without some of the biases we’ve talked about before and that people I think there’s a consensus across a range of views that it can be relevant. I’m not saying I’m not specifying how that factors should be can considered… saying it needs to be considered. [LESLIE FRANCIS] Yeah I was saying that the quality of that the fair innings argument gains some of its moral appeal from the idea or from the assumption that quality of life, as people have lived through the life cycle has been roughly similar. I tried out a version of that argument some years ago and boy did I get slammed by feminists, who pointed out that life cycle analyses may look rather different for people who spent their lives sacrificing for others. [MICHAEL STEIN] And we also had a second question from our students Charlene who will celebrate her graduation in a couple of months on immunity for healthcare workers. And Charlene’s referring to things like for example the Florida healthcare workers asking for immunity from anything other than criminal negligence and or intentional acts. My initial reaction to it as someone who got a degree in 19th century history is that once upon a time we had something called charitable immunity the idea being that paternalistic, well-intended organizations, often faith-based, who were doing really good work within their communities ought not

to have any liability for any results in harm from the individuals they were taken care of, and we saw a very bad results from that ranging from inadvertent harm to the movement towards institutionalization and so on. So I believe that our health care workers are acting in best faith and are doing heroic work, but they ought to still be held to acting under reasonable circumstances. What is reasonable and a COVID pandemic is going to be different than what’s reasonable in the day to day lives by providing care to individuals [GLENN COHEN] Excellent so I think we are almost done but two more questions one from the audience, one more for me the one. From the audience is NursesKidOne is the person who asked this, a question about disclosure. Traditionally a physician has a fiduciary responsibility to a patient, so in triage what disclosures become appropriate as to the evidence base for a decision, so that’s one question. And then my question I want to end on a slightly more hopeful note which is to say imagine we get past the ventilator issue and we’re now instead talking about resuming non normal life the return to work. I’m curious whether you have any views about whether discussions about antibody testing and conditioning access to employment and antibody testing or the like how that’s going to intersect with the Americans Disabilities Act the rehab Act or other relevant statutes. So thoughts on either of those would be very welcome and then when you’re done we will wish ajourn to our audience. [GOVIND PERSAD] So I have some thoughts about your your second question about antibody testing. I think it’s going to be really important to… if this is done to do it right and to consider the impacts both of doing it, and of not doing it. I think one question that people sometimes raise is you know what about people who are not yet immune or can’t be immune on how we think about the way in which a regime of conditioning opportunities on testing would affect them. I think it would be valuable to be clear about two different questions one is how we can support those people effectively and how we can make sure they have access to jobs that don’t put them at risk. I mean the second question is whether we need to ignore differences in risk when assigning people to jobs. I don’t think I think everybody is going to be protected by the disability law, but I don’t think this disability law is going to require ignoring differences in the risk that someone is placed at themselves, or that they may place others at in a specific job. I think the Supreme Court case I think speaks to that question [MICHAEL STEIN] And I would just say I had a gratuitous comment that while it’s important to include people on the basis of disability protect them against discrimination on the basis of disability we have an 80 something plus percent unemployment rate among people with disabilities as is, so my political comment is let’s get people with disabilities jobs first and then worry about COVID testing. Yes and I was suggesting in in my thoughts that we are gonna need to think seriously about accommodation for people with immune compromised conditions for example who may not be able to work safely. But we’re also gonna have to think about modifications in work structures that might actually turn out to be like curb cuts and beneficial for everyone. I mean I think we’re learning a lot about what we can do with Internet connectivity that we never would have imagined even six weeks ago. [GLENN COHEN] Excellent well with that let me thank the panelists, and thank all of you who stay to the end, this will be available for further review about one to two weeks with captions. And again our next event on this topic will be on COVID, I should say will be about the ethics of PPE and I think that’ll be a particular interest of some of the medical people, but really to everyone. So thank you again very much, and I wish everybody to stay safe and thank you again. [LESLIE FRANCIS] Thank you. [OMAR HAQUE] Yeah thanks Glenn. [GOVIND PERSAD] Thanks everyone else. [MICHAEL STEIN] Thank you. [OMAR HAQUE] Thank you