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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.
Jay Ruderman: The COVID-19 pandemic has brought about many challenges for the world. Businesses have closed, schools have closed, and they 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 with COVID-19, but also the regular patient base.
Narrator: All Inclusive–a podcast on inclusion, innovation, and social justice with Jay Ruderman.
Jay: 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.” Thank you for joining us today. Maybe we can talk a little bit about your background and how you got into the position that you hold today at the University of Pennsylvania.
Dr. Sisti: Thanks for having me. I’m a biologist and 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 in seminar in that program, I decided that 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. I then 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 Healthcare. That’s actually funded by a small foundation here in Philadelphia called the Tom Scattergood Behavioral Health Foundation. I still direct the program and much of my research is focused on the ethical challenges that emerge from psychiatric care. I can tell you a little bit more about the projects from the Scattergood program I do as we continue here today.
Everything I do is to try to expose and facilitate dialogue around social injustice is as they relate to people in most cases, psychiatric or mental disabilities, but in general vulnerable persons who don’t often get a fair shake by the health system. That’s been the driving force of my work. I’ve done research in jails and prisons where I’ve looked at the challenges we’ve got in taking care of individuals with serious mental illnesses inside correctional facilities. These 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 an underlying theme to my work which is to try to undo some of these really large institutional and systemic forms of discrimination against vulnerable persons.
Jay: Your work sounds to be vitally important at this time, but it’s mainly ethical and theoretical in nature. And 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 we’d like your input on?”
Dr. Sisti: Jay, it is a great question. I mean, it’s too much. I prefer thought experiments to real questions about, you know, extubating one individual to get a ventilator to another individual, and those are the 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 the level that I never experienced before. And I can speak for many of my colleagues who share 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.
Jay: 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 bring someone with your background into it, I think it 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?
Dr. Sisti: No more than a hundred. I would say folks who’re really at the highest level of pandemic response ethics are 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 is Frandor Kaplan. He’s involved in a lot of the conversation around this and has been taking lots of calls. My interim chair Steve Joffe, you know, he’s another individual who’s been very influential. There’s a group out of Pittsburgh as well who we’ll probably talk about, who had a large influence on the way we’ve constructed in and thought about triage guidelines led by a guy named Doug White. It’s not like we’ve got hundreds of bioethicists roaming the country. It’s a small field and within the field, the population of clinical ethicist who are engaged in this is even smaller. So, you know, I put the number in that may be under a hundred for people just kind of writing and thinking about this and then dozens who are now actively involved in policy at the federal, state, or municipal level.
Jay: These conversations that have been happening with hospitals. Are they happening with the local and state governments, or the federal government, or even foreign governments?
Dr. Sisti: All of the above, depending on who we’re talking about. For example, Zeke is an advisor to the World Health Organization, so he’s involved in conversations up and down that hierarchy I 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 in critical care physician at Penn and he’s been working with Doug White and others to promulgate guidelines that the other hospitals can use the Pittsburgh model. As described in the white paper, has been taken up by dozens if not hundreds of hospitals as a model. So really, depending on the person and their contacts and their role, there’s conversations at all those levels. I, myself, have had conversations with folks from the Philadelphia DA’s office about the decarcerating of our city jail 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 that we’ve highlighted in the white paper.
Questions have come in from individual clinicians and stakeholders in the community who were concerned about how they should behave, whether they should isolate themselves when they go home and stay out of the house or what they should do. So, everything from individual choices and decisions that are now essentially risk-benefit analysis. Every decision, it 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. At the federal government level, it’s less apparent that bioethicists are involved. There are these task forces and Dr. Fauci is the leader of I think the most 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. I would add her to the list of bioethicists who are influential at this time.
Jay: Without divulging any personal information about any patients, can you just give an example of maybe a call you’ve had that’s been in a real-life situation where you had to weigh in on during the pandemic?
Dr. Sisti: Fortunately, I haven’t consulted on any specific cases yet, but I’ve consulted on a 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 doctors in Italy and Spain has written papers in JAMA and issued basically warnings to us. If you don’t do what the public health experts tell you to do, you’re going to be seeing more cases and so the question then becomes how do you ethically and appropriately make that choice to say, “OK, 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 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 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 involve conversation with important stakeholders, like individuals from the disability community. And so if I were to get a call that was essentially a question about removing the ventilator, choosing between two or more people for that, I would turn to these guidelines and use them as a tool because they are really thorough, and really thought out and they are ethically and philosophically coherent. At least we have those, and you know, there’s going to be potentially cases where you need to rethink aspects of the guidelines and that’s okay. But for sure I think the majority of cases that would save these guidelines offer us a reasonable and at the ethically appropriate route to – not a good decision, but to a decision that is ethically defensible.
Jay: We talked about it a few times and you’ve mentioned it, the University of Pittsburgh medical center triage guidelines. What they are and why they are being so widely accepted.
Dr. Sisti: These are guidelines that were first developed by Doug White and Bernard Lowe. I guess it would have been maybe 2007/2008 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. Then the guidelines went through another process of community engagement and deliberation that included individuals with disabilities. And the final version was promulgated in the earliest months of the pandemic and reissued. Essentially what it does is it attempts to show or provide a framework for determining 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 are the goals of many other guidelines including the New York task force that developed guidelines in 2015 in the event of an 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 doctors 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. This is about a sequential organ failure score. This is 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.
Jay: Let’s talk about 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.
Dr. Sisti: Whenever we think 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’s algorithms that have been developed that are used by the organ transplant system in the United States. And there’s multiple different algorithms depending on the organ – whether you have kidneys, lungs, or heart. But they’re evidence-based algorithms that have been developed to determine who should get these very scarce resources. The point is you wouldn’t want to give someone, say, a liver, if – this is actually controversial -they have an active alcohol addiction, that may imperil the health of that liver. It turns out it’s probably not a big deal if they start drinking again based on some of the evidence that has recently come out. But you get the point that the principal there is that 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. Likewise, you wouldn’t to have a heart go to somebody who has overcome morbidities that will essentially make it impossible for them to stay compliant with their immunosuppressant drugs, right? 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 of it when somebody who could live a full life will get the heart and be okay.
That’s one example, and when you have cases of individuals with disabilities, and disability is such a such a broad term, it’s hard to 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 the ventilator over this kid that maybe doesn’t have an intellectual disability because the kid that doesn’t have an intellectual disability – and this is something you might hear – has a better quality of life or has a better shot at being socially useful in some way. To having a job, or creating economic growth or something, right? You might even create a thought experiment where it was a CEO who was an entrepreneur and can create all this wealth potentially, versus somebody who isn’t and is maybe intellectually disabled. Should it matter that the CEO creates all these jobs? Those types of questions are really difficult and disturbing, and at the end of the day we want to be able to say ‘no, 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 the 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. 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 with the accommodations that they otherwise should get, I would argue that individuals with disabilities and pre-existing conditions should get a higher level of treatment, of accommodation almost. To be able to provide them the health care they need in a way that’s ethically appropriate, they should get those resources.
It turns out, a lot of folks with disabilities have limited access to healthcare, they have limited access to support. Those are all sorts of structural things that exacerbate, often times, the conditions, the comorbidities, 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. I would argue that individuals with disabilities have, you know, we have a moral obligation to recognize individuals with disabilities as vulnerable persons who have been penalized systemically. They should get equal consideration and potentially additional accommodation. All of this should be based in empirical evidence. It shouldn’t be just ‘this individual disability gets it, or they don’t get it.’ It should be really rooted in an empirical assessment of the individuals’ prognosis and diagnosis.
Jay: 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 they come in with. But what about the moral issue? Let’s say you have a 20-something year-old coming to the hospital with COVID-19 and a person with a disability coming in. The 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. Are those decisions part of this at all, or is it purely medical, like can you survive? 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. How are those decisions made or if they’re made at all?
Dr. Sisti: 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 rationing of kidney dialysis machines. This was in the late 1960’s, and they did in fact use social benefit criteria. So, you can imagine how that went. Individuals who were really well-liked in a 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? We now would argue that that was just patently unethical. We don’t want to use these subjective criteria around social worth to make these life-and-death decisions.
So, in a hypothetical you describe, the fact that the individual has a criminal record is irrelevant in the fact that the other individual may have a great job, and has the means to create more jobs, that’s irrelevant as well. It really does boil down to as objectives as you can be about the medical facts, and where those lead. All medical information, all science, is intrinsically value laden. 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.
Jay: Let’s say for example, someone comes in who depends on a supply of oxygen, they are on oxygen, 24 hours per day. And they have a severely compromised respiratory system. They come in with this, are they just 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?’
Dr. Sisti: 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 all on their own ventilator, and they had their own ventilator. I’ve heard some folks are worried that their ventilators will be taken from them because of the shortage of ventilators, that would be an egregious violation of individual liberty. Ventilators, oxygen, whatever kinds of interventions or supportive devices that a disabled individual use are more like part of them as a human being they become part of their body in a sense. And to remove oxygen or a ventilator from the person, whose life has and whose life has always depended on it, would be the equivalent to like taking someone’s lungs out and transplanting them into another person, that would be wrong. So, if an individual with a disability appears in the ER, they have COVID-19, they have compromised lungs, that will affect their score, of course. But recognizing that they have a disability and that’s a vulnerability, they should be given a chance. It may be the case that most of the critical care clinicians would say ‘this individual’s going to die no matter what we do. In those cases, if that’s the consensus, disability or not, then allocating a ventilator to the person simply because you think it’s a sort of a symbolic gesture or something that seems to support a principle of equality would be wrong. You would not want to do that – that would be irrational. But in cases where all things being equal, except for if someone has a disability, they should have the same chance as anyone else to receive the same ventilator and supportive care. And even a little bit more supportive care to make up for the structural imbalances that may be exacerbated their condition.
Jay: Let’s talk about how the guidelines are made as objective as possible and why it would be important to have a disability advocacy organization involved in helping to create the guidelines.
Dr. Sisti: I think a key piece here that you want to have everyone’s voice reflected in guidelines and to extent possible accommodate the values of everyone in the community. Particularly 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. It seems really important to me to have input from communities like the disability community who have suffered under injustices perpetuated by medicine. That’s really the key point is to provide a space in the dialogue and to make the dialogue 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.
Jay: One of the key takeaways of the white paper that you just coauthored with the Ruderman Family Foundation is the designation that allied healthcare providers should include experienced family members and paraprofessional caregivers of persons with disabilities. How could the treatment process of people with disabilities when they go to the hospital not just help the person with the disability receiving medical attention but how does it help the medical staff?
Dr. Sisti: The point there is that many individuals with disabilities depend on others throughout their day to accomplish activities of daily living, various functions that they themselves can’t do by themselves and have caregivers and partners to make those things possible. These individuals are not just friends or family members or visitors, they’re really healthcare providers. And so far, as we can provide these individuals s with proper protective equipment and in so far as these individuals themselves are not COVID carriers – that’s important to know. I think they should be allowed to spend time in the clinical setting with the folks they’re caring for. That would mean that the individual with the disability has not only their regular care giver 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 kind of medical choices need to be made and the individual with a disability has a communication problem or there’s not 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 very 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 learning about the ventilator or the way it works or isn’t working, to be able to monitor the patient so that the actual hospital clinicians can be freed up to care for other patients. A lot of this turns on the availability of PPE, because if you don’t have PPE, you can’t really have these folks in the hospital exposing themselves and potentially others to COVID. But, if you can get them the PPE, it seems to me to be pretty clear that they do have a place within the clinical setting as a clinical caregiver and that would be beneficial to everyone involved.
Jay: Let’s talk a little bit about stigma because in 2020 you would think stigma or bias against people with disabilities in a medical setting wouldn’t be there, but obviously, it’s there. And individual doctors, nurses bring their own biases that they grew up with. So how does that play out in this situation and how do we avoid having those biases play a role in the treatment of people with disabilities.
Dr. Sisti: That’s a great question and I do agree that healthcare providers harbor stigmatizing views towards individuals with disabilities. In my own work on mental illness, many stigmatizing attitudes and beliefs that we hear about and consider to be problematic are held by healthcare professionals. Almost more frequently than the general public. So, it’s critical that we figure out ways to address this reality. In the 1980’s, when the HIV epidemic hit, 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. Stigma around how HIV was contracted. I think these days with COVID we’re not seeing that as much which is fortunate. We’re seeing sort of an opposite dynamic which is really encouraging that people are just volunteering now to take care of these folks and see it as a duty, a professional duty but almost a civic duty to be on the frontlines of this thing. Somethings changed in the ether surrounding this thing – which is a good thing. I’d like to think that we’ve taught a lot of bioethics in the last 25 years in med school and maybe that helped. But with disabilities there’s still this notion of ‘quality of life’ that permeates everything in medicine and – to an extent – understanding and trying to enhance quality of life is legitimate medicine, but it needs to be done in collaboration. It can’t be done through unilateral decisions about a patient’s quality of life. So, to get beyond that 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 where that is a commonsense view that we need shared decision making with the patient or their guardian. That in and of itself that clinicians can no longer make these unilateral decisions about quality of life and by the way, the Pittsburgh guidelines prohibit such subjective assessments – that to me is progress. Now, will there be moments where there still is stigma? Yes. We mention the Alabama guidelines and other states guidelines where they do have exclusionary criteria based on diagnosis so people with intellectual disabilities were being excluded from even being involved in the triage process in the Alabama guidelines that were written and finally rescinded a few weeks ago and revised. So, you see this idea of quality of life manifests still across the country in ways that seem scientific but really aren’t. They might say ‘Oh individuals with intellectual disabilities won’t do as well on a ventilator’ they might have comorbidities, and that’s fine but let’s talk about the comorbidities that matter, not the intellectual disability. Don’t exclude people based on a diagnosis. Don’t exclude people based on their age in that matter in my opinion.
Jay: Regarding Alabama, are the states speaking to each other? Are they following similar guidelines or are the guidelines you’re facing different depending on which state you are living in and brought to a hospital in.?
Dr. Sisti: they are going to differ. But many hospitals have taken the Pittsburgh model and adopted it for their own hospital and largely kept the model intact. Hospital systems are speaking to each other. I know Scott Halpern who I mentioned before has been working with Doug White to push them out and disseminate them out so that as many hospitals as possible can use them, much like the New York Task Force’s ventilator model became a model in 2015 and Doug White’s group kind of reflected each other’s models and the details of the models have been amplified across both those sets of guidelines. So, these are spreading but it does matter 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 gotten the memo on the Pittsburgh guidelines, you might still be seeing decisions based on a previous diagnosis.
Jay: I would hope that as the virus passes the peak point in some areas that have a lot of ventilators, that those ventilators could be moved to other parts of the country. Especially in rural areas where they may have very few ventilators. We’ll see how that plays out.
One of the other key takeaways form the paper is “Prioritizing the needs of patients with COVID-19 over others who are critically ill due to other illnesses or trauma is arbitrary and unjust.”
Do you think it’s possible that patients with disabilities and not in hospitals, might not receive the same level of care if they didn’t have COVID19?
Dr. Sisti: It’s a great question. I think given the way the health system is being taxed and we have an economic shutdown I think we all are going to receive less medical attention than we would normally get. So, I think its predictable that people with disabilities will also. The problem will be, will that difference in what they get and what they normally 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. Might not be what they usually get because we can’t do that because of the shutdown and things like this. But it should be at an ethical acceptable level that the individual can live and be healthy and be comfortable for the next several months if not year while we’re dealing with this situation. I think that will be a big issue and 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 we are 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.
Jay: We’ve seen so many stories in the news about nursing facilities, homes where there are multiples of people with disabilities or the elderly or combination that COVID-19 has run through those facilities. And that has led to 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.
Dr. Sisti: Residential facilities are tinder boxes for this thing. 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 and I get that. There needs to be really strict visitation policies again, like 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 it could be registered in some way. They can you know, essentially take 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 socially isolate when I leave but really trying to minimize individuals in and out of the place is going to be critical. Ancillary folks going outside should not be allowed in unless they are 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 residential facilities that are double rooms or suites, figuring out how to get people into a single room spaces would be ideal. I know that’s probably not possible for lots of places but some places it is. So, I guess your facilities for example here in Philadelphia, Friends Hospital have single rooms for all their patience. And that’s why it’s at 100% occupancy right now while other 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 know, you can get people distanced, then that would be ideal. But again, people with complex needs, distance is disruptive and that can be harmful disruption can be harmful, change to be harmful. And so, we have to measure that impact against the healthcare risk to those individuals.
Jay: 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 – you see how this will lead to any concrete changes in the future?
Dr. Sisti: So yes, I think so everything from so it’s being residential facilities the physical plants of places like nursing homes or residential facilities are going to have to change because we have to start thinking about the next pandemic, the big one. This is not the big one I don’t think. I think was global climate change and what we’re finding in terms of this 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 distancing capable physical plants. So, if we could do that would be in a good in a good way and he’s residential facilities and even in hospitals and turn to that’s just an architectural note that might make sense. 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 policy I would say that we’re going to begin a process of coming to terms with the fact that our healthcare system is utterly broken and unjust. Folks are advocating for Medicare for all and universal health care and other forms of single payer socialized healthcare, I think will win the day. I had a professor of bioethics years ago say the only way we’re going to get to universal health care is if we have a pandemic and people realize what it means to not have health care and how it affects those who do have healthcare when there’s a huge segments of 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. It 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 the opportunity of the crisis provides. The opportunity is no here to make a very strong case for universal healthcare that’s just.
Jay: 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 people in poor health and more susceptible to catching COVID-19.
Dr. Sisti: Basic things Like food security, housing, 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 standard public health interventions that have been used since you know, the Middle Ages, since the plaque. Separating people, getting them what they need, being socially distanced, contact tracing. These are basic public health initiatives and food security is critical. We shouldn’t have to rely on schools to feed kids. Right? So, it’s as if schools closed why should that cause the hunger crisis in a community? I mean I think we now see the important roles of schools in our society is not just about taking care or teaching kids. It’s almost like they become, healthcare providers for lots of kids. It’s important that schools do provide that kind of help, but that shouldn’t be the norm. These should be things that happen emergencies or whatever. So, we’re seeing all of the I think really bizarre and disturbing injustices that maybe we’ve taken folks like me or privileged and didn’t recognize when I was growing up, can see now, 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.
Jay: So, this might be a little bit of your purview, but I’m just interested here. I think we’re going to see in the next coming weeks, a real clash between those medical experts saying ‘listen we have two social distance and we have to isolate in order to reduce the number of cases’ and those saying ‘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 affects people in society and their health care their well-being and psychological well-being and so forth as well as their financial future,’ so I don’t know how you see it that all playing out but I see this coming to a head pretty soon.
Dr. Sisti: I think it’ll depend on the state and 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 going to happen over and over again for the next well – as long as there’s not a vaccine this will continue. I appeal to people’s self-interest when they argue this point and basically say it’s like the penny-wise pound-foolish notion. Where you can get some added economic bump if we open early, but guess what, you’re going to be closed down again in the months and frankly, lots of people going to be dead. You can 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 3 and 4 years experts haven’t had 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 at that are experts for a reason. You wouldn’t take your kid to a mechanic to get their ears checked, you would take him to a doctor who has the expertise and training. That’s what these people are. They’re the experts. They are the public’s doctors who are 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. Anthony Fauci is one of those people and 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 one to get to really make the call on this question. Trust me they are 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. 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 of the day the frankly deserve, and that we all would benefit from.
Jay: One final question. What do you think that people 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?
Dr. Sisti: It’s important that individuals with disabilities have a clear channel through which to communicate their needs and wishes. If they’re cut off, if they’re 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 and making sure that they’re okay. Being sure that they’re able to communicate out their needs. 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 and provided with extra care and support. Over here in in Penn Valley where I live, we created a neighborhood kind of collective where we can all email each other if anybody needs anything. In particular we’re keeping track of the elders on our block. 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 anymore. I don’t want to speak for the community individuals with disability here, but my first concern is if they get access to folks who can help them, and communication is so critical in that way.
Jay: Dr Sisti I really want to thank you for joining us today, and your expertise is 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.
Dr. Sisti: Thanks for having me.
Jay: 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, transcript, or to learn more, go to RudermanFoundation.Org/allinclusive. Have an idea for a podcast? Be sure to tweet at Jay Ruderman.