All About Change - Season 3, Episode 1: Fair Resource Allocation During the COVID-19 Pandemic: The Case for People with Disabilities and Equality of Consideration

Episode Date: April 26, 2020

The COVID-19 pandemic has impacted the world unlike anything else since the Spanish Flu over 100 years ago. Healthcare professionals have been put in a very difficult situation, and have to make very difficult decisions on which patients receive treatment and equipment and which patients do not. Jay talks with Dominic Sisti, PhD, MBE. Dr. Sisti is an assistant professor and director of the Scattergood Program for Applied Ethics of Behavioral Health Care in the Department of Medical Ethics & Health Policy at the University of Pennsylvania.See omnystudio.com/listener for privacy information.

The COVID-19 pandemic has brought about many challenges for the world. Businesses have closed, schools have closed, and we can no longer gather with family and friends. The biggest challenge has been given to hospitals and healthcare workers who must treat not only patients who have COVID-19, but also the regular patient base. All Inclusive, a podcast on inclusion, innovation, and social justice with Jay Ruderman. Hi, I'm Jay Ruderman, and this is All Inclusive. Our guest today is Dr. Dominic Sisti, who recently co-authored the Ruderman White Paper entitled, Fair Resource Allocation During the COVID-19 Pandemic,

The Case for People with Disabilities and Equality of Consideration. Dr. Sisti, thank you for joining us today. Maybe you can talk a little bit about your background and how you got into the position that you hold today at University of Pennsylvania. Thanks for having me. I'm a bioethicist and a philosopher by training. I was a biology major as an undergraduate at Villanova and a philosophy minor, and I got very interested in ethical issues around the time of the Human Genome Project in the late 90s. I decided that I was super interested in bioethics while working for GlaxoSmithKline, actually, in regulatory affairs, and decided to pursue a master's degree in bioethics at Penn. Upon my first visit and seminar in that program, I decided that was going to be my career. I decided then and there to become

a bioethicist, to study the ethical and moral challenges that are really intrinsic to the therapeutic relationship between physicians and patients, but also between society and members of society and vulnerable populations. And so then I went off and did a PhD in moral philosophy and bioethics at Michigan State and finished that in 2010 and came back to Penn to direct a program on mental health care and ethics called the Scattergood Program for Applied Ethics of Behavioral Health Care. That's actually funded by a small foundation here in Philadelphia called the Thomas Scattergood Behavioral Health Foundation. I still direct that program, and much of my research is focused on ethical challenges that emerge from psychiatric care. ethical challenges that emerge from psychiatric care. And I can tell you a little bit more about the projects I do for the Scattergood program as we continue here today. But the under, sort of, undergirding of everything I do is to try to expose and facilitate dialogue around social

injustices as they relate to people with, in most cases, psychiatric or mental disabilities, but in general, vulnerable persons who don't often get a fair shake by the health system. So that's been the driving force of my work. I've done research in jails and prisons where I've looked at the challenges, the ethical challenges of taking care of individuals with serious mental illness inside correctional facilities. To me, those are folks that are some of the most vulnerable persons. They're often mentally ill, they're minorities, very low education level, very vulnerable socioeconomically, and highly stigmatized. So depending on the specific issues, there's usually a underlying theme to my work, which is to try to undo some of these really large institutional systemic forms of discrimination against vulnerable persons. Now, when we're facing a pandemic that's come upon us fairly quickly, how often are you being

reached out to by governmental authorities and saying, listen, there are really important medical ethical decisions that we have to make right now. And, you know, we'd like your input on it. It's a great question. I mean, Jay, I got to tell you, it's too much. I prefer the thought experiments to real questions about, you know, extubating one individual to give a ventilator to another individual. And those are the types of questions that I'm now getting. They're really scary questions. I never thought, frankly, that we'd ever be in a position where this would be the kind of question I would receive on a workday and have to actually think through with real world consequences. I mean, I've been involved in clinical ethics for a long time and I have consulted on very

difficult cases, but this is at a magnitude and a level that I never experienced before. And I can speak for many of my colleagues who have shared this feeling, but it's overwhelming. And we're the theoreticians and the folks on the sidelines talking about the issue. So I can't imagine what it's like to be a clinician who is charged with the responsibility to make these really impossible choices. I would imagine in a triage situation, there are decisions that are made very quickly and in the best capacity that they can be made. But bringing someone with your background into it, I think will provide an extra level of really thought analysis. How many people would you say are in your position around the United States who are being consulted on a daily basis? No more than 100, I would say. Folks who are really at the highest level of

pandemic response ethics, a couple of dozen at the most. My department chair, for example, Zeke Emanuel, he's involved in a lot of the highest level conversations around the response to the pandemic. So I would point to Zeke as one of the leading voices in bioethics on this. My former boss and chair and friend, Art Kaplan, he's involved in a lot of the conversation around this and has been taking lots of calls. My interim chair, Steve Jaffe, you know, he's another individual who's been very influential. There's a group out at Pittsburgh, as we'll probably talk about, who have had a large influence on the way we've constructed and thought about triage guidelines led by a guy named Doug White. I mean, it's not like we've got hundreds of bioethicists roaming the country. It's a small field. And within the field, it's, you know, the population of clinical ethicists who are engaged

in this is even smaller. So, you know, I put the number in the maybe under 100 for people just kind of writing and thinking about this. And then dozens who are actively involved in policy at the federal, state, or municipal level. So in these conversations, are they happening with hospitals? Are they happening with local and state governments or the federal government or even foreign governments?

All of the above, depending on who we're talking about. So for example, Zeke is an advisor to the World Health Organization. So he's involved in conversations up and down that hierarchy you just mentioned. Others are more hospital-based and working with hospital administrators and groups of hospitals across the country to coordinate guidelines. So like my colleague Scott Halpern, for example, is a pulmonologist and critical care physician at Penn, and he's been working with Doug White and others to promulgate guidelines that other hospitals can use. The Pittsburgh model, as I describe in the white paper, has been taken up by dozens, if not hundreds of hospitals as a model. So yeah, so it really, I mean, depending on the person and their contacts

and their role, there's conversations at all of those levels. I myself have had conversations with folks from the Philadelphia DA's office about decarcerating our city jail, trying to empty it out a bit to get to a place where it's safer. I've talked with officials here in the state, disability advocates, about the same sort of issues that you've highlighted and we've highlighted in the white paper. Questions have come in from individual clinicians and stakeholders in the community who are concerned about how they should behave, whether they should isolate themselves when they go home and stay out of their house or what they should do. So, you know, everything from individual choices and decisions that are

now essentially risk-benefit analyses, every decision becomes a risk-benefit analysis when you're a clinician involved in this, all the way up to individual versus community, municipality, to state and federal government. Now, at the federal government level, it's, I think, less apparent that bioethicists are involved. So there's these task forces. Dr. Fauci is the leader of, I think, the most, I think, legitimate expert panel that is informing the federal government. His wife happens actually to be a bioethicist named Christine Grady. She runs the NIH Bioethics Center. So I'm sure he's getting lots of informal curbside advice from his spouse, Christine. Yeah. So I

would add her to the list of folks that the bioethicists that are influential at this time. Without divulging any personal information about any patients, can you just give an example of maybe a call you've had that's been a real life situation where you've had to weigh in on during the pandemic? So fortunately, I haven't consulted on any specific cases yet, but I've consulted on guideline adoption and visitation policies and things like this. But I can tell you that there have been cases that I've heard about where individuals had to be extubated. And so doctors in Italy and in Spain have written papers in JAMA and have issued basically warnings to us that if you don't do what your public health experts tell you to do, you're going to be seeing these cases. And so the question then becomes, how do you ethically and appropriately make that choice to say, okay, this individual

who is on the ventilator now needs to come off of it so that this other individual can have a shot. They have a better shot, in fact, and that's why they deserve the ventilator. And those are the kinds of cases that I would dread, frankly, being involved with. But we do have evidence-based triage guidelines that are designed to make the decision transparent and less, you know, sort of psychologically draining. These procedures are really well thought out. And in the case of the Pittsburgh model, the case of the New York ventilator guidelines, things that we've cited in the white paper. They involved conversation with important stakeholders like individuals from the disabilities community. And so if I were to get a

call that was essentially a question about removing a ventilator or choosing between two or more people for event, I would turn to these guidelines and use them as the tool because they are really fair, really thought out, and they're ethically and philosophically coherent. And so at least we have those. And there's going to be potentially cases where you need to rethink aspects of the guidelines, and that's okay. But for, I think, the majority of cases that we'll see, these guidelines offer us a reasonable and ethically appropriate route to not a good decision, it's not a good decision, but to a decision that's ethically defensible. So let's jump in a little bit about, because we've talked about it a few times, or you've mentioned it, the University of Pittsburgh Medical Center

triage guidelines, what they are and why they're being so widely accepted. These are guidelines that were first developed by Doug White and Bernard Lowe. I guess it would have been maybe 2007, 2008-ish time. And they were really well thought out. They were initially published in the Annals of Internal Medicine. They were criticized for various reasons, some of which I think are relevant to our conversation about individuals with disabilities, the earliest versions. And then the guidelines went through another process of community engagement and deliberation that included individual disabilities. And the final version was promulgated in the earliest months of the pandemic and reissued. how we can decide who will get a ventilator, which is at the moment a very scarce resource, such that we can save the most lives and also save the most life years. And so those are the basic goals of the Pittsburgh model. And frankly, they're the goals of many other guidelines,

including the New York task force that developed guidelines in 2015 in the event of a avian flu pandemic. The guidelines use a number of metrics that are empirically based and valid. These are metrics that are typically used to help critical care docs decide and figure out treatment plans for individuals who are in the ICU, ventilator dependent, and they're based on what's called a SOFA score. So this is about, you know, sequential organ failure score. This is a, again, a validated method to essentially predict who will do well in the ICU and who will not on ventilator support in the ICU. And so that's one aspect of the guidelines is to use the SOFA score as an objective marker for determining prognosis and survivability.

So I just want to dig in a little bit further, because let's talk about what the fundamental aims, when you say saving the most lives and saving the most life years. What does this mean and how is this impacting people with disabilities during this latest COVID-19 pandemic? Whenever we think about triage, we think about essentially extracting the most value we have from the resources that are available to us. One might think about cases of organ transplantation where there's a shortage of, say, kidneys or other vital organs. We would decide, and there are algorithms that have been developed that are used by organ transplant, the organ transplant system in the United States, UNOS, to develop. There's multiple different algorithms depending on the organ, whether it's kidneys or lungs or hearts.

But there are evidence-based algorithms that have been developed to determine who should get these very scarce resources. And the point is you wouldn't want to give someone, say, a liver if they, this is actually controversial, they have an active alcohol addiction that may imperil the health of that liver. Turns out it's probably not a big deal, actually, if they start drinking again, based on some of the empirical evidence that has recently come out. But you get the point that the principle there is like you'd want somebody with a healthy, quote unquote, lifestyle to take the gift of a liver and use it wisely and not damage it so that they can get the most value out of it. You wouldn't want to have a heart go to somebody who has other comorbidities that will essentially make it impossible for them to stay, say, compliant with their immunosuppressant drugs.

So if they have other things and they can't take immunosuppressants, it doesn't seem wise to give them a heart knowing they'll probably reject it or they won't get as many years out when somebody who maybe could live a full life would get the heart and be okay. So, you know, so that's, that's one example. And so when you have cases of individuals with disabilities, and so disability is such a, such a broad term, it's hard to kind of generalize here. If, for example, you have an individual with an intellectual disability, you might hear folks say, well, you know, they don't really deserve, say the ventilator over this kid that maybe doesn't have an intellectual disability because the kid that doesn't have an intellectual disability maybe has, and this is something you might hear, has a better quality even kind of create a thought experiment where it's like a CEO who is an entrepreneur and can create all this wealth potentially versus somebody who isn't and is maybe intellectually disabled. And should it matter that the CEO creates all these jobs? And so those types of questions are really sort of difficult and disturbing. And at the end of the day, we want to be able to say, no, you know, look, those things don't matter so much to the medical decision around the ventilator. We don't want to begin to look at the value of individuals' lives in this sort of economic way. It takes us down a very dangerous path if we start to think that way.

And so the guidelines have checks and balances in them to try to prevent those kinds of biases from seeping in. And the goal is to provide everyone with equal opportunity to the scarce resource. Now, if an individual with a disability has a comorbidity, that would make it difficult for them to survive on a ventilator in a hospital, even withorbidity that would make it difficult for them to survive on a ventilator in a hospital, even with the accommodations that they otherwise should get, right? And I would argue that individuals with disabilities and pre-existing conditions should get a higher level of treatment, of accommodation almost, right? To be able to provide them the healthcare they need in a way that's ethically appropriate, they should get those resources.

It turns out, you know, a lot of folks with disabilities have limited access to healthcare. They have limited access to support. And so those are all sorts of structural things that exacerbate oftentimes the conditions, the comorbidities, and the disabilities. So they shouldn't be penalized for those things. They shouldn't be penalized for society's inability to provide accommodations and accessibility to care previously that maybe made them sicker or exacerbated a disability. And so I would argue that individuals with disabilities have, you know, we have a moral obligation, I think, to recognize individuals with disabilities as vulnerable persons who have been penalized systemically, and they should get equal consideration and potentially additional accommodation. Again,

all of this should be based in empirical evidence. It shouldn't be just sort of, oh, individual has disability, they get it or they don't get it. It should be really rooted in an empirical assessment of the individual's prognosis and diagnosis. So, I mean, I understand the pre-existing conditions and how they can impact these decisions based on which patients may more successfully recover based on the condition that they come in with. But what about the moral issue?

Let's say you have a 20-something-year-old come into the hospital with COVID-19 and a person with a disability coming in. A person with a disability, let's say, has a family and is a contributing member of society, and the person without the disability has a long criminal record, let's just say. I mean, are those decisions part of this at all? Or is it purely medical? Like, you know, can you survive? Are you... Because I'm just thinking on a moral sense, and maybe this is not part of it at all, but you might be able to save a life of someone who may be ultimately a detriment to society for a long time, as opposing to save someone in a somewhat compromised position who is a real benefit to society. And I don't know

how those decisions are made or if they're made at all. Years and years ago, the earliest rationing committees, this was around the time of kidney dialysis just being invented. And there was a hospital out in Seattle that had to make some tough choices around the ration time of kidney dialysis just being invented. And there was a hospital out in Seattle that had to make some tough choices around the rationing of kidney dialysis machines. This is like in the late 60s. And they did, in fact, use social benefit criteria. So you could imagine how that went, right? So individuals who were really well liked in the community, maybe they were community leaders, religious leaders, people who had some quote unquote social worth to the community, got favored over others who didn't. And that's just

wrong, right? So we now know, like we now would argue that that was just patently unethical. We don't want to use sort of these subjective criteria around social worth to make these life and death decisions. So in the hypothetical you described, the fact that the individual has a criminal record is irrelevant. And the fact that the other individual may have a great job and have the means to create more jobs, that's irrelevant as well. It really does boil down to as objective as you can be about the medical facts and where those lead. All medical information, all science is intrinsically value laden. So we can't really ever extract objectivity without the residue of human values, but we can try the best we can and show that

we're trying the best we can through transparent guidelines. And that's what these do. So let's say, for example, someone comes in who depends on a supply of oxygen. They're on oxygen almost 24 hours a day. And they have a severely compromised respiratory system. They come in with this. Are they just sort of out of luck that this is their situation? Or is there a way to just say, we're taking this into account, but we're not discounting them? I think that is what these guidelines would do.

I think that would be the ethical thing to do. An individual who comes in, maybe they're on their own ventilator, right? And they have their own ventilator. I've heard of some folks are worried that their ventilators will be taken from them because of a shortage of ventilators. That would be an egregious, I think, violation of individual liberty. You know, ventilators, oxygen, whatever kinds of interventions or supportive devices that a disabled individual uses are more or less part of them as a human being. They become part of their sort of body, in a sense.

And to, you know, to remove say oxygen or event from a person whose, whose life depends on it and whose life has always depended on it, let's say would be, you know, equivalent to, to like taking someone's lungs out and transplanting them into another person that would be wrong. So if, if an individual with a disability appears in the ER, they have COVID, they have compromised lungs that that will affect their score, of course. But recognizing that they have a disability and that's their vulnerability, they should be given a chance, right? Now, it may be the case that most of the critical care clinicians would say this individual is going to pass, going to die, no matter what we do. And in those cases, if that's the consensus, disability or not,

then allocating a ventilator to the person simply because you think it's got sort of a symbolic gesture or something that seems to sort of support a principle of equality would be wrong. You wouldn't want to do that. That would be irrational. But for cases where all things being equal, except for someone has a disability, they should have the same, you know, same chance as anyone else to receive the same, you know, the ventilator and supportive care, and even a little bit more supportive care to make up for the structural imbalances that maybe exacerbated their condition. So let's talk a little bit about how the guidelines are made as objective as possible, and why would it be important to have a disability advocacy organization involved in helping to create the guidelines? So I think that, you know, a key piece here is that you want to have everyone's voice

reflected in the guidelines, and to the extent possible accommodate the values of everyone, you know, in the community and in particular in the disability community where there is a historic legacy of negligence and even abuse by the institutions of medicine over the past century toward people with intellectual disabilities and psychiatric disabilities and physical disabilities. So it seems really important to me to have input from communities, like the disability community, who have suffered under injustices perpetuated by medicine. And so that's really the key point is to provide a space in the dialogue and to make the dialogue really open to individuals who have been marginalized or hurt by medicine so that those folks can express their values, their fears,

their wishes, and influence the guidelines to prevent further examples or instances of abuse or negligence. So one of the key takeaways from the white paper that you just co-authored with the Ruderman Family Foundation is the designation that allied healthcare providers should include experienced family members and paraprofessional caregivers of people, persons with disabilities. How could the treatment process of people with disabilities when they go to the hospital, not just help the person with a disability receiving medical attention, but how does it also help the medical staff? The point there is that many individuals with disabilities obviously depend on others throughout their day to accomplish activities of daily living, various functions that they themselves can't do themselves or by themselves. And they have caregivers and partners, care partners and others who make those things possible. These individuals are not just friends or

family members or visitors. They're really healthcare providers. Insofar as we can provide these individuals with proper protective equipment, and insofar as these individuals themselves are not COVID shedders or carriers, that's important to know, I think they should be allowed to spend time in the clinical settings with the folks who they're caring for. nearby, but also that they'll have an advocate in instances where difficult choices need to be made potentially, or just medication choices or various kinds of medical choices need to be made. And the individual with the disability has a communication problem or, you know, there's no access to various kinds of facilitated communication. So having a caregiver there to be the communicator, the advocate, and also as a stand-in for the clinical staff who are going to be super busy, you can have a caregiver with their loved one or with the individual sitting with them, keeping track of them, taking care of them,

maybe even helping to, you know, learning about the ventilator, learning about the ways in which the ventilator works or isn't working to be able to keep, you know, check and monitor the patient so that other clinicians, the actual hospital clinicians can be freed up to care for other patients. So again, a lot of this turns on the availability of PPE, because if you don't have PPE, you really can't have these folks in the hospital exposing themselves and potentially others to COVID. But if you can get them to PPE, it seems to me pretty clear that they do have a place within the clinical setting as a caregiver, as a clinical caregiver, and that would be

beneficial to everyone involved. You're listening to All Inclusive with Jay Ruderman. You can learn more. View the show notes and transcripts at rudermanfoundation.org slash all inclusive. Please remember to subscribe, rate and review us wherever you are listening. stigma? Because, you know, in 2020, you'd think that stigma bias against people with disabilities in a medical setting, you know, wouldn't be there, but obviously it's there. And, you know, individual doctors, nurses, medical personnel bring their own, you know, biases that they grew up with. So how does that play out in this situation? And how do we avoid having those biases maybe play a role in the treatment of people with disabilities?

Yeah, it's a great question. And I agree. I think healthcare providers do harbor stigmatizing attitudes and views, unfortunately, for individual, towards individuals with disabilities. In my own special, you know, my work on mental illness, many of the stigmatizing attitudes and beliefs that we hear about and consider to be problematic are held, in fact, by health care professionals almost more frequently than the general public, in fact. And so it's critical that we figure out ways to address this reality. In the 1980s, when the HIV epidemic happened, we saw clinicians refusing to take care of individuals who were HIV positive. We saw dentists refusing to take care of HIV positive folks. And a lot of this was driven by stigma, obviously stigma around how HIV was contracted or is contracted. That was amplified

by the stigma around the population and who those folks were. I think these days, I think with COVID, the stigma around the population and who those folks were. I think these days, I think with COVID, we're not seeing that as much, which is fortunate. We're not seeing stigma around COVID patients. In fact, we're seeing sort of an opposite dynamic, which is really encouraging that people are really just volunteering now to take care of these folks and see it as a sort of duty, professional duty, but almost a civic duty to be on the front lines of this thing. Something's changed in the ether around this pandemic, which is a good thing. I like to think that we taught a lot of bioethics in the past 25 years in med school, and that maybe helped. But with disabilities, you know,

there's still this notion of quality of life that permeates everything in medicine. And to an extent, that's an important, you know, understanding and trying to enhance quality of life is really like, it's legitimate medicine, but it really needs to be done in collaboration. It can't be done through unilateral decisions about one's quality, you know, a patient's quality of life. And so to really, I think, get beyond that sort of set of stigmatizing views, you just have to engage in a conversation of shared decision-making with the individual who has the disability or their advocate if the individual is unable to advocate for themselves. I think we're getting to a place now where that is just a kind of common sense view that we need

shared decision-making with the patient or their guardian. That in and of itself, the fact that clinicians no longer can make these unilateral decisions about quality of life. And by the way, the Pittsburgh guidelines prohibit such subjective assessments. That's, to me, progress. Now, will there be moments where there is still stigma? Yes. And, you know, we mentioned the Alabama guidelines and other states' guidelines where they do, in fact, have exclusionary criteria based on diagnosis. So individuals with, say, intellectual disabilities were being excluded from even being involved in the triage process in Alabama under the guidelines that had been written that were finally rescinded a few weeks ago and revised. So you see this idea of quality of life manifest still across the country in ways that sort of seem scientific,

but really aren't, you know, they might say, oh, well, the individuals with intellectual disabilities won't do as well on a ventilator. They might have, you know, comorbidities. Well, that's fine. But like, let's talk about the comorbidities that matter, not the intellectual disability, right? Don't exclude people based on a diagnosis. Don't exclude people based on a, on their age for that matter, in my opinion. I was just going to ask you regarding Alabama, are the states speaking to each other? Are they following similar guidelines or are the guidelines that you're facing different depending on which state you end up living in and being brought to a hospital in? Well, they are going to differ,

but many of the hospitals have taken the Pittsburgh model and adapted it for their own hospital and largely kept the model intact. So yes, states are, I should say, hospital systems are speaking with each other. I know Scott Halperin, as I mentioned before, is working with Doug White to promulgate these out, to push them out, disseminate them so that as many hospitals as possible can consider using them. Much like that the New York task force's ventilator model became a model in 2015. And, you know, Doug White's group reflects, they sort of reflected each other's models and the details of the models have kind of been amplified across both of those sets of guidelines. So these are spreading, but it is the case that depends on where you are. If you're in a community hospital in North Dakota, where there isn't a whole lot of

bioethics expertise and folks haven't really gotten a memo on the Pittsburgh guidelines, you might still be seeing decisions being made based on a previous diagnosis. I would hope that as the virus passes the peak point in some areas that have a lot of ventilators, those ventilators can be moved to other parts of the country, especially in rural areas where they may have very few ventilators at all. We'll see how that plays out. One of the other key takeaways from the paper is that prioritizing the needs of patients with COVID-19 over others who are critically ill due to other illnesses or trauma is arbitrary and just. Do you

think it's possible that patients with disabilities and not in hospitals might not receive the same level of care that they would if they did not have COVID-19? It's a great question. And I think, I mean, you're talking about residential type facilities or home or whatever it might be. Yeah. And I think given the way this health system is being taxed and the fact that we have an economic shutdown, you know, we're all going to receive less, you know, medical attention than we would normally get, I think. So I think it's predictable that individuals with disabilities will also, the problem will be like, well, that delta, that difference in what they normally get and what they're going to get. If that gets to be too wide simply because of their disability, that's a problem.

We should be making extra efforts to provide individuals with disabilities a level of care that is ethically acceptable. It might not be what they usually get because we can't do that because of, you know, the shutdown and things like this. you know, the shutdown and things like this, but it should be at an ethically acceptable level that the individual can live and be healthy and comfortable for the next several months, if not year, while we're dealing with this situation. So yeah, I think that's going to be a big issue. I mean, I think also just access to services, transportation, things like this that become much more difficult. These are things that are going to disproportionately affect individuals with disabilities. And so we got to be sure that we're addressing their needs while maintaining the reality, maintaining the social distancing and the public health measures that are really important as well. So it's a really tough balance, but with conversation and

smart thinking, I think it's doable. So we've seen so many stories in the news about nursing facilities, you know, homes where there are multiples of people with disabilities or the elderly or a combination, you know, that COVID-19 has just sort of run through those facilities and has led to many, many deaths. Any thoughts on in that situation, how that should be dealt with? Because those seem to be where a lot of the deaths are coming from. Yeah. So residential facilities are sort of tinderboxes for this thing. And to the extent possible, individuals should be moved out of these facilities and placed in safer locations if they can go home,

if they can be with family and isolated. That's not always possible. I get that. There needs to be really strict visitation policies. Again, if there's caregivers that need to be there that are from the outside, they need to self-isolate when they leave the facility. And so they could be registered in some way.

They can, you know, essentially take, you know, an oath of some kind to say, like, I'm going to come in and take care of my loved one and I'm going to social isolate when I leave. But really trying to minimize individuals in and out of the place is going to be critical. Those, you. Those sort of ancillary folks from the outside should not be allowed in unless they're really needed. Now, I would also say if you can distance people, if there's a way to create single bedrooms or single rooms, if there's hospital residential facilities that are double rooms or suites, figuring out how

to get folks into single room spaces would be ideal. I know that's probably not possible for lots of places, but some places it is. Psychiatric facilities, for example, here in Philadelphia, the Friends Hospital has single rooms for all their patients. And that's why it's at 100% occupancy right now, while other psychiatric facilities are at 50% because they have double rooms. It's basic math. So if it's possible to create single rooms and isolate folks, even if it means standing up temporary rooms in cafeterias and other places where you can get people distanced, then that would be ideal. But again, people with complex needs, it's disruptive and that can be harmful. Disruption's disruptive, and that can be harmful. Disruption can be harmful.

Change can be harmful. And so we have to measure that impact against the healthcare risks to those individuals. You mentioned that you believe that the pandemic, the COVID-19, has put a spotlight on the potential for unequal medical care for people with disabilities, and you think there may be some positives coming out of this. Do you see how this will lead to any concrete changes in the future? So yes, I think, so everything from, so speaking of residential facilities, the physical plants of places like nursing homes or residential facilities are going to have to change. We're going to have to start thinking about the next pandemic, right? The big one, I think. This is not the big one,

I don't think. I think with global climate change and what we're finding in terms of novel viruses out there, there could be a bigger one. And many people predict there will be a bigger one. So we need to be ready for it. And that means creating physical plants that can be easily switched over to quarantine, distance, distancing, capable, physical plants. And so if we could do that, we'd be in a good in a good way in these residential facilities, and even in hospitals. And so that's just sort of an architectural note that might make sense. And frankly, I think houses are going to end up changing. There's going to be more houses with

little home offices and adaptable spaces for people in case we're sheltering in place in the future. In terms of policies, I would say that we're going to begin, I think, a process of coming to terms with the fact that our healthcare system is utterly broken and unjust. Folks who are advocating for Medicare for all and universal healthcare and other forms of single payer socialized healthcare, I think will win the day. And I had a professor of bioethics years ago said, the only way we're going to get to universal healthcare is if we have a pandemic and people realize what it means to not have health care for everyone and how it affects folks who do have health care when there's a huge segment of the population that doesn't have health care. He, I think, was very right. And I still think about that point he made years and

years ago. I think we're going to see that happen. I think that the political will was already here before the pandemic. And now we see the consequences of unjust, unequal, fragmented healthcare that disproportionately affects people with disabilities, people of color, people of low economic status. So yeah, this is going to change a lot. And we should be, as Rahm Emanuel says, never let a crisis go. It's an opportunity. So never miss it. The opportunity that a crisis provides, I think the opportunity. So never miss the opportunity that a crisis provides. I think the opportunity is now here to make a very strong case for universal healthcare that's just. I think another issue that I'm seeing reported a lot is food insecurity in

certain communities and how that may be leading to an exacerbation of, you know, people in poor health and more susceptible to catching, you know, COVID-19? Basic things like food security, housing, you know, these are things that are fundamental to the public's health. Access to hygienic practices, to being able to take showers, wash your hands, use disinfectants and Purell. I mean, these are basic things. These are not high-tech interventions. These are, high-tech interventions. These are standard public health interventions that have been used since the Middle Ages, since the plague. Well, not Purell, but separating people, getting them what they need, being socially distanced, contact tracing. These are basic public health initiatives.

distanced, contact tracing. These are basic public health initiatives. And food and food security is, you know, critical. I mean, we shouldn't have to rely on schools to feed kids, right? So if schools close, why should that cause a hunger crisis in a community? I mean, I think we now see the important role of schools in our society. It's not just about taking care, you know, teaching kids. It's almost like they've become, you know, healthcare providers for lots of kids. And that's, you know, it's important that schools do provide that kind of healthcare, but that shouldn't be the norm, right? These should be things that happen in emergencies or whatever. So we're seeing all of the, I think, really bizarre and disturbing injustices that maybe we've taken, you know, folks like me who are privileged and didn't recognize when I was growing up can see now,

right, just brightly that this is all just wrong. And this pandemic is shining a very bright light on that. And if people aren't seeing it, they're looking away and they're in denial because it's pretty obvious. So this might be a little bit out of your purview, but I'm just interested here. And I think we're going to see in the next coming weeks, a real clash between those medical experts saying, listen, we have to social distance and we have to isolate in order to reduce the number of cases and those saying the economies have to open up because if we don't, there's going to be all sorts of problems that are going to be exacerbated that affect people in society and their healthcare, their wellbeing and

psychological wellbeing and so forth, as well as their financial future. So I don't know how you see that all playing out, but I see this coming to a head pretty soon. Yeah. I mean, I think it'll depend on the state and the politics. My feeling is that most Americans understand the gravity of the situation and are willing to take, you know, the sacrifices that they're taking, that we're taking to make sure that we do this right. Because if we get it wrong, this is just gonna happen over and over again for the next, well, as long as there's not a vaccine, this will continue. So that makes, I mean, I appeal to people's self-interest

when they argue this point and basically say, well, okay, it's sort of like the penny wise pound foolish notion where, okay, you can get some added economic bump if we open early, but guess what? You're gonna be closed down again in a month. And frankly, lots of people are gonna be dead. So you could try, but they tried it in other places and it caused more carnage and wreckage than had they just kept it closed. Politicians are going

to have to listen to the experts for once, at least in the last three and a half, four years. Experts haven't gotten the respect that they deserve. These are people who have spent their lives figuring out how to deal with these huge public health catastrophes. Anthony Fauci, 50 years of service. The guy is a genius. He knows how to do this. He should be the one leading the pandemic response at a federal level. These are folks that are experts for a reason. You wouldn't take your kid to a mechanic to get their ears checked. You would take them to a doctor who has the expertise and training. That's what these people are. They're the experts.

They're our public doctors. They're here to take care of us. The people to listen to are the experts who have trained for decades and have worked for decades in the interest of the public health. And Anthony Fauci is one of those people. There's dozens of others, hundreds of others in the government. They need to be the ones who determine policy and they should be the ones who get to really make the call on this question. Trust me, they're well aware of the economic issues. They're well aware of, probably more so than any politician,

of the impact on health that being isolated may cause, they know all of this. They're not idiots. They get it. So that's in their heads when they're figuring this stuff out. And so we need to trust them. And, you know, that's hard for some people. But, you know, I feel very confident in these folks if they can be given the power that they frankly deserve and that we all would benefit from. One final question. What do you think that people with disabilities and disability advocacy organizations can do at this time to ensure that they receive an equal level of medical care

in dealing with COVID-19, but also in general? Yeah, and I think it's important that we all recognize or that individuals with disabilities have a clear channel through which to communicate their needs and wishes. If they're cut off, if they're like literally socially distanced, not just physically distanced, but they're cut off from communicating their needs, that's a big problem. So I think it's important that we make it really clear to the public at large that one, you should be checking on your loved ones, your friends, your neighbors who may have disabilities and staying in touch,

making sure that they're okay, being sure that they're able to communicate out their needs. Like that to me is the most, I think, fundamental important thing right now is to be sure that we're checking on people and they know that they can reach out to people who can help them. Likewise for their caregivers or advocates. If you have elder parents caring for a disabled child, those elder parents should be given support and provided with extra care and support. And over here in Penn Valley, in Narberth where I live,

we've created like a neighborhood kind of collective where we can all email each other if anybody needs anything. And in particular, we're keeping track of the elders on our block. And I think that's going to have to be the way things work at a local level. I mean, I don't know how these large apartment buildings in New York City or other places would do it, but there needs to be sort of a really granular grassroots approach to taking care of folks who are vulnerable in the community, checking in on them, making sure they're okay. These are the basic things that people just should do anyway, just to be decent human beings, right? But now I feel like we have an ethical duty to do that and

more. I don't want to speak for the community of disability, of individuals with disability here, but that would be my first concern is that they get access to folks who can help them and communication is so critical in that way. So Dr. Sisti, I really want to thank you for joining us today. And your expertise is, I think, vital as we move forward. Medical ethics of this situation are tremendous, and I think it deserves more coverage. So thank you for joining us today. My pleasure. Thanks for having me. Thank you. All Inclusive is a production of the Ruderman Family Foundation.

Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org slash allinclusive. Have an idea for a podcast? Be sure to tweet at Jay Ruderman.