I'm delighted to welcome you to panel 7, the final panel of the 32nd annual McLean Center Conference. The moderator of that panel will be Dr. Tracy Krugler, who is a pediatric critical care specialist and also provides clinical consultations for children in the burn unit. Tracy Krugler served as the medical director of the pediatric intensive care unit between 2007 and 2013. For the past 10 years, Tracy has been the co-director of the Ethics Consultation Service for the McLean Center and also has been vice chair of the Institutional Review Board here at the University of Chicago. Dr. Krugler is an active researcher and educator. Her research interests include organ donation, the doctor-patient family relationship, and ethical dilemmas related to severe neurologic disease. The speakers, the six speakers in Tracy's panel today are Harold Pollack, Valerie Koch, Daniel Brodney, Niranjan Karnik, Lynn Janssen, and Ranjana Srivastava, who will be speaking from Australia. Dr. Krugler will moderate today's final panel of this year's McLean Conference on the general topic, clinical medical ethics. Thank you so much. Thank you so much for that warm introduction. It is terrific to be here. Let's see. Can folks see my slides? There we go. Let me just start at the beginning. I should say that I have no disclosures. And I also want to say, I want to congratulate Mark, as others have said in this, you're just an inspiring scholar, clinician, and colleague, and you've improved the lives of so many humans with the work that you do. I just have deep respect for that. I want to start today with what looks like, you might interpret as a snark tweet, but actually isn't. It's from Chris Hayes from April.  Freedom, on the other hand, is government telling you that you have to go to your plague-infested pork processing plant alongside other workers who might be sick. We might interpret that as a kind of snark, but it's really a profound meditation on positive and negative liberty that we experience in a society, particularly one that faces the threat of a pandemic. Let me also tell you two stories that build on this. They're two people, they're 77 years apart, they seem to have nothing in common, except that they do. They're two essential workers. The first story is about a worker named Karamaya in Bengal, India in 1943. This is actually a childhood memory of Amartya Sen. One afternoon, a man came through the gate screaming pitifully and bleeding profusely. He had been knifed in the back. He was a Muslim day laborer. His name was Karamaya. He had come to deliver a load of wood. His wife had told him not to go to a hostel area during the communal riots, but he had to go out in search of work because his family had nothing to eat. A second story, San Francisco 2020, Time Magazine. There are many things that worry Fina Kao about working in a busy donut shop. The elderly customer who shuffles across the brown linoleum floor of the shop orders a glazed donut and then coughs. The regulars who come in and who Kao knows travel annually to China. This was in the period of the epidemic where people were very frightened of the transmission from China, but Kao and her fellow workers at All Start Donuts don't have much choice but to show up to work. Their only shield from potential coronavirus carriers being a 24 ounce bottle of alohan sanitizer. If we don't work, says Kao, age 31, we don't get paid. These stories seem to have nothing in common except that they do. Here's two vulnerable human beings who risk so much, one of whom lost everything, because they needed to work for very mundane reasons. Their society did not protect their most basic interests in an emergency. These stories, for me, are a real reminder that the basic obligation of a just society, especially one that is facing a frightening pandemic, is to protect each and every one of us against risks that would crush any one of us where we left to face them alone. COVID-19 is a reminder of this, of course, a more general reality. Let's think about the depth of the COVID failure. For a lot of us in public health, this has been just a tragic thing to watch a failure in slow motion of exactly the thing that people in public health have been worried about for decades. This poor response reflects immediate managerial and leadership failures, but the failures are much deeper than any one person or presidential administration, even this one. For those of us who might have a dim view of the current president, there's chronic neglect of public health infrastructure and organizations, disrespect for the craft of public management that vulnerable populations require so much. The systematic imbalance in our medical care political economy with its over emphasis on personal clinical services, the failure to address chronic disparities, vulnerabilities and social determinants that lead people so vulnerable when a pandemic hits, and the poor pillars of social insurance and social protections that are required when people are facing this catastrophe. These are not just technocratic government failures, these are social justice failures too. I should say, I'll show you a couple of graphs, or I guess this may be the only actual graph that I'll show you, there's at least one spending category in American healthcare where we've really been admirably disciplined. We have a $4 trillion healthcare system where spending an incredible amount of money on all sorts of stuff, but we have done a great job disciplining our spending on public health preparedness. This here is from the CDC, and it shows how we've really been able to constrain our disaster preparedness spending, and below levels, prior to COVID we were below levels that we had in 2003. I was in some of these battles 11 years ago, I was quite active in the fight over putting more public health money into the Recovery Act, and we had some success, but minimal, and it was actually striking that Senator Collins, for example, was very proud that she had taken money out that had been dedicated for swine flu preparedness, and it was put into healthcare clinics, it was not actually put into boondoggles, but it was taken out of public health, and she was very proud of that. She didn't think that was an appropriate use of stimulus spending. To put another way, why are these two pictures so different? This picture on the left is actually the main lobby area at Lurie Children's Hospital where my wife happens to work actually as a medical social worker, and so fantastic facility in a lot of ways. I'm very happy that children facing serious cancers or other issues that bring them to Lurie have that wonderful fish tank and beautiful atrium there, which actually is substantially more expensive than the building that my wife worked in in her first field placement with helping foster kids. The picture on the right is the homeless shelter near my house just before COVID hit. We're in Harvey, Illinois, and we have all of these homeless individuals who are sleeping on the floor, very vulnerable to COVID and in this facility that is so profoundly, does not look like the atrium of Lurie Hospital. Why do these two bars look so different? The one on the left is the program budget for the World Health Organization, and it's about a little over $4 billion, and the one on the right is the annual revenue of one healthcare system in the United States, partners in Massachusetts, and partners, they spend a little bit more than three times what the World Health Organization is spending. I think it's fair to say that partners health is more technically proficient than the World Health Organization. It's really not surprising since it has a budget that's three times as large and as many other supports. Why is this happening? There's no single answer to this question. Part of it is that public health is boring until it isn't. We value identified lives more than statistical lives. What could be more boring than going to a community meeting about whether we should put fences around wells, and of course then there's nothing more urgent than whether we'll be able to rescue baby Jessica if she falls down into one of those wells because there was no fence around it? Public health services are often favored by concentrated and powerful interests. Public health efforts often support diffuse constituencies and populations, including global populations. Many of these populations are socially marginal, disorganized, politically weak. That's a social justice failure that we see in COVID. COVID really engages every kind of disparity in social cleavage. Income, disability and health status, immigration, precarious housing in residents in correctional or congregate living facilities that prevent physical distancing, disparities across nations, disparities in technical proficiencies across medical providers that serve different populations. A very critical issue here in Chicago. And now I would say also political polarization, a domain in which the public health community has shown that our cultural competence has really fallen short. And I'll just note this, but won't say much about it now. But we're serving, many of us look at these pictures and feel a real sense of psychological distance from the folks depicted here. All these people are going to get sick because we're there distant from the public health community. If we're here in Chicago at disparities, very, very striking disparities across Chicago in COVID fatality and infection. This is from up to April 17. And in fact, there's one prosperous community listed here, which is Lincoln Park. And the reason Lincoln Park is there is because it has some nursing home facilities there. But very large disparities across Chicago where if we had a more updated graph, you would see that the Latinx neighborhoods that are populated by essential workers have very high rates of COVID, although the fatality rates aren't quite as bad as one might fear. Global dimension, we are now outbidding many countries for essential supplies required to control COVID. And that's a global justice concern that perhaps will come up in the panel discussion. But let me finish by talking about the roles of social insurance as a mechanism to improve social justice in a pandemic. One of the most basic functions of social insurance is to facilitate and allow self-protected behaviors during an emergency. We want people to physically distance if they have COVID symptoms. Well, you need paid sick and family leave for many people to feasibly do that. People need to be living in housing structures that allow fiscal distancing and social insurance programs can help with that. We need to finance available treatments for illness and injury through universal coverage. And as I mentioned, ensuring that the technical proficiency of providers who serve low income people is what it needs to be. We need to protect people from the economic consequences of disasters and from the measures required to mitigate those disasters. We have many, many people who cannot be working now due to COVID. Maybe they're restaurant workers. We require unemployment benefits and other things. We also require social insurance to, as a show, don't tell moment to promote cohesion and stability that shows us all that we are equal citizens. And when we leave people to their own devices in an emergency, they draw their own conclusions about whether we really regard them as equal citizens. Let me note five protections for equal citizenship that I believe are important. One is, of course, preventing or ameliorating prior disparities that matter a lot in the case of COVID. One of the examples where we really have seen a failure of that, I think back to the literature that's come out recently in health economics about the Tuskegee experiment. When the Tuskegee experiment became publicly known, the health status of older African American men measurably declined in some areas. And it was because the earned distrust of the health care system that arose from that. People with very basic issues around hypertension control, other things, did not turn to the health care system because they witnessed the way that the public health care system had treated a group of black men so on ethically. Command over required economic resources to obtain necessities in an emergency. I mentioned that, that kind of speaks for itself. I would say command over political resources to obtain necessities and also to get a rapid emergency response when issues come up. And the disparity in the urgency of political feedback has been quite noticeable in COVID. It's very familiar to those of us who were public health professionals during the era of HIV and crack, for example. As I witnessed it, everyone that I knew was sad as HIV, as the mortality from HIV was growing, as the harm from crack was becoming so pronounced, everyone was sad about it. But to many of the most important people in the society, this was a sad problem that was happening to other people. And I would say the same with Flint, the Flint water supply. Long before we knew that the Flint water had led in it, we knew that it was gross. It was discolored. People were burning themselves in the shower from the water. And a lot of people were really sad that this was happening in Flint. But I had been a professor at the University of Michigan for years, and I can tell you that if there was gluten in the water in Ann Arbor, it would have been a national emergency, and it would have been fixed very quickly. Many, many politicians simply did not regard it as a matter of incredible urgency that this be dealt with right away for their own political survival. And I would say with COVID, many essential workers now lack PPE, many nursing home workers lack PPE. We're all sad about it. How urgent is this as a political problem facing elected officials in the United States? I won't talk about it now. I don't have time, but I would say that another protection would be equal protection on the basis of disability and to make sure that when emergency resources are rationed that these are done in a way that honors the equal citizenship of individuals. And the use of cost utility analysis is problematic in that regard. Let me close finally by noting the centrality of Medicaid. Medicaid is the major vehicle through which we pursue social justice in public health and medical care. The amount of dollars in Medicaid dwarf what we do in everything else in public health. And I would say most of the Medicaid policy debate has concerned access to personal clinical services rather than on social determinants or population health. And we really have to think more broadly about using Medicaid for housing supports to deal with jail and prison health, school-based services. If you look at an issue like case finding, if we have someone that we find who has COVID-19, we will pay for their medical care. If we want to go out and find new people or new people who might be at risk for HIV, there's no federal matching rate for that. And so of course a state like Illinois being totally rational is going to emphasize at the margin personal health services over epidemiological surveillance, public health infrastructure, case finding and the rest. And that's a failure of social justice because many of those things are just critical activities. And so one of the most important structural changes that we can make would be to move public health from an annual appropriation to an entitlement like Medicaid that has a federal matching rate where we can really ensure as a society that states and localities have the right incentives to really make those public health investments that vulnerable populations need. I'm going to stop now. Thank you so much for your attention. And I look forward to the other presentations and the discussion. Okay. Thank you very much. And everybody remember to put questions for all of the speakers in the chat box. And we will have a whole panel to answer questions at the end of this. So the next one is Valerie Gutman Cook. She's the director of law and ethics at the McLean Center for Clinical Medical Ethics at the University of Chicago. She is also an assistant professor and co-director of the Health Law and Policy Institute at the University of Houston Law Center. This is a new position for her. Her work focuses on how medical and technological advances impact law and how policy can be better equipped to address these changes. Previously, she was a senior attorney to the New York State Task Force on Life and the Law, the state's bioethics commission, where she oversaw the publication of the state's pandemic ventilator allocation guidelines. Today, she will be giving a talk titled Crisis of Standards of Care and Liability Shields. Please join me in welcoming Valerie Gutman Cook. Thank you, Tracy. And as always, it's an honor to speak at this wonderful conference, and I wanted to welcome congratulations to Dr. Siegler. So the COVID-19 pandemic has overwhelmed many American systems, including the already strained medical system. And these systems are intended to protect and care for its citizens. Hospitals, health care providers, policymakers have faced the bleak reality that there may not be sufficient resources for all patients who need them, despite hospitals practicing surge capacity, cancelling or postponing elective procedures, and transferring patients or sharing resources. Across the country, alarms continue to be raised about the potential for insufficient equipment and staff, including ventilators or dialysis machines, personal protective equipment, necessary drugs or vaccines, and trained individuals to operate that equipment and treat patients. As we've seen in earlier presentations during this conference in response to the very real possibility that there will be insufficient resources to properly respond to the COVID-19 pandemic, health care providers will be forced to provide a different level of care than under non-emergency circumstances. In response, states have developed crisis standards of care plans. These plans often authorize the prioritization of patients for scarce resources based on changing circumstances and increased demands. They provide a mechanism for reallocating staff, facilities, and supplies to meet needs during a public health emergency. This is from research that I did a while back, serving the variation between crisis standards of care across the country, and we've also seen Dr. Parker and his colleagues very important work on ventilator allocation guidelines. But all of these plans often share the goal of saving the most lives possible. As a general rule, they focus on allocating resources solely on clinical medical criteria in an effort to avoid making decisions based on race, gender, age, or other social criteria. In most instances, these triage protocols are not binding law. Rather, they are state-level guidance that the governor can trigger at the time of or after a declaration of emergency. In a non-crisis setting, the prevailing medical standard of care focuses on the needs of an individual patient and is centered on the principle of informed consent. But the conditions of a public health emergency directly affects the dynamics of the doctor-patient relationship, as it exists in normal non-emergency circumstances. Due to the dearth of necessary resources and trained professionals during a public health emergency, the standard of care that clinicians may be able to provide during a pandemic may by necessity depart significantly from standard non-emergency medical practice. And as we have seen, healthcare providers have felt the pressure of having to make seemingly impossible decisions under incredibly stressful circumstances. Just yesterday in the Atlantic, Ed Young described the impact that the current surge in COVID-19 cases across the nation is having on healthcare workers. And we have heard personal and heartfelt accounts throughout the last two days as well. Due to the shifting standard of care necessitated by a pandemic, clinicians, healthcare institutions, and policymakers have expressed concern about potential legal liability for following crisis standards of care. Adhering to crisis standards of care may expose healthcare providers and entities to considerable costs and burdens, including the risks of both civil and criminal liability. A healthcare provider may risk lawsuits, financial penalties, and or jail time, hire medical malpractice, insurance rates, and damages to one's reputation. Many calls for fair treatment of healthcare providers are premised on the principle of reciprocity. And they've led to state support for immunity provisions for those who sacrifice their own well-being in service of the public good. Liability concerns are particularly acute, where crisis standards of care recommend things like ventilator withdrawal without patient consent. Some commentators have asserted that there may be a legal distinction between withholding and withdrawing life-sustaining treatments or therapies such as ventilators, and have noted the potential for increased liability concerns with the latter. So, I've done some research on various types of immunity provisions, and Erin DeMartino showed a version of this work that I published on the Harvard Law website earlier this summer. But I have found significant variation among states regarding if and how legal liability protections might be provided to physicians, nurses, and others who have provided medical care during a public health emergency. There are no uniform legal protections for the provision of care under disaster circumstances or pursuant to state resource allocation guidelines. Various laws provide different levels of protection. Some laws provide civil immunity, some provide both civil and criminal immunity, and some states provide neither. Further, some liability protections are enacted or insured legislatively through the legislature, through the law, and other states have issued executive orders or rules that are in effect only during the emergency. In most cases, executive orders have defined expiration dates, either a date that's written into the EO itself or at the termination of the declared emergency. So, as of June 2020, 37 states provided some sort of civil immunity protection for physicians who provided care in a public health emergency. Prior to the pandemic, many states already had legal rules or guidance regarding malpractice liability for care provided during a public health emergency. Those state laws are represented by the light blue shade on this map. And of the 37 states that provide liability shields to health providers, 22 states had promulgated new protections, specifically in response to the COVID-19 pandemic. Importantly, all applicable laws that provide civil immunity for providing medical care during a public health emergency do so conditionally. In other words, if the physician has engaged in willful or intentional misconduct, gross negligence, recklessness, or has provided care in the absence of good faith, the physician would still be subject to civil liability. Only three states, Maryland, New York, and New Jersey, provide protections to physicians from criminal liability that may result during the public health emergency. Civil liability protections also vary significantly regarding the types of actions that are being protected. Some states liability shields immunize injury or death that occur specifically where the health care providers comply with federal, state, local, or institutional plans, guidelines, or crisis standards of care. For example, Colorado's law is tailored to actions taken in compliance with state crisis standards of care or pandemic-related guidelines. Some states limit their liability shields to negligent care of patients specifically diagnosed with COVID-19, for whom the standard of care may be modified due to the pandemic. For example, Rhode Island and Pennsylvania narrowly drafted their immunity provisions to only cover negligent care of patients diagnosed with COVID-19. In contrast, many other states provide more broad civil liability protections. These laws ostensibly cover any harm to patients, irrespective of COVID-19 diagnosis or treatment, as long as the health care providers' actions were in support of the state's response to the COVID-19 pandemic. In other words, the health care providers' actions needed to be in accordance with a specific crisis standard of care or guideline to be protected, as long as that negligence occurred during the pandemic. Many states also instituted liability protections for institutions such as hospitals and nursing homes and other long-term facilities. These are the ones represented by light blue shading. But since March, many passed laws that provide liability shields for institutions who provide negligent care since the pandemic began, so as shown by the darker blue shaded states. Institutional protections are much more prevalent today than before the pandemic began. And almost without exception, state civil immunity provisions for health care institutions exclude, again, willful or intentional misconduct, gross negligence, recklessness, or the provision of care in the absence of good faith. Further, New York and New Jersey extended criminal immunity provisions to health care facilities that provide care during the pandemic. So I argue that liability protections are most appropriate in instances where health care providers, meaning doctors, nurses, surgeons, physician assistants, etc., and in some limited circumstances, institutions, when they follow in good faith crisis standards of care. Immunity provisions are appropriate when care is provided, pursuant to local, state, or federal rules, guidance, or protocols that are modified from the norm and necessitated by emergency circumstances. So we should determine liability protections based on, one, whether there are rules, guidance, or crisis standards of care that have been promulgated to elucidate the modifications to the existing standard of care required during the state of emergency. And two, when there is an identified need to extend legal protections to providers or institutions based on perceived reluctance to follow crisis standards of care intended to save lives because they are afraid of liability. I'm often asked why I don't support blanket liability, the broader liability that some states have embraced for all care provided during the pandemic. Importantly, the legal standard of care is intentionally adaptable to changing circumstances and therefore would adjust to the needs of medical care in a pandemic. The standard of care is by necessity flexible, so it's unnecessary then to provide immunity for good faith decisions made by providers or institutions who provide care during the pandemic. Rather, as I argued here with my colleagues, activating and publicizing pandemic response plans and crisis standards of care may be in fact sufficient to provide legal protections to those who follow such guidance. But I believe that local and state governments should still work to alleviate doctors and other healthcare providers uncertainty about malpractice liability when they provide appropriate medical care to patients during the pandemic. Not only will laws that provide liability protections potentially encourage adherence to crisis standards of care, thereby resulting hopefully in more lives saved, we also owe a responsibility to those physicians, nurses, and other healthcare providers who risk their own lives to save others. However, calls for immunity provisions in order to encourage providers and institutions to follow crisis standards of care in emergency circumstances are being co-opted in an effort to extend legal immunity to those who would potentially provide substandard care. Immunity provisions for nursing homes specifically and other institutions have been embraced by some as an extension of protections for frontline heroes in the fight against COVID-19. But the justification of encouraging good medical decisions pursuant to crisis standards of care is not served by these incredibly broad provisions that are contained in many state laws that provide immunity for care. Thus, advocacy groups, patients write advocates, others have argued that extending liability protections to long-term care facilities, including nursing homes, which account for more than half of coronavirus deaths, is at best ill-advised and at worst, deadly. Generally, immunity provisions for nursing homes are not directed at encouraging providers to follow state guidelines or crisis standards of care in a public health emergency. Rather, they provide blanket protections to institutions who are often already struggling to adequately serve their residents due to, as one health affairs article put it, years of neglect and chronic underfunding. Nursing homes have historically and continuously lobbied for liability protections even under non-emergency circumstances. New liability shields may immunize institutions from ongoing negligence that may have even started occurring before the pandemic. And during the pandemic, broad institutional immunity provisions remove the last line of protection for residents. Due to scarce resources and the need to ease some restrictions during emergency circumstances, some states have already suspended inspections and other oversight mechanisms. Visitors are restricted during the pandemic, and therefore family members and friends are unable to check in and hold facilities accountable if things appear improper, resulting in little to no institutional accountability and eliminating the deterrent effect of the law. Thus, immunity provisions are really only appropriate when they are intended to encourage adherence to institutional or state guidelines that depart from ordinary standard of care but are intended to save the most lives during the pandemic. I recognize that this proposal may now provide immunity to healthcare providers or institutions in circumstances where they are simply overwhelmed by the number of cases presenting at a given moment. But the state has not provided guidelines or rules for addressing that particular situation. In those circumstances, the inherent flexibility that the standard of care should sufficiently protect providers and institutions who do their best in the worst of situations from liability, while also allowing patients and their loved ones to seek recourse for injuries or death that occur due to poor decision making. Thank you. Hello. It's another wonderful talk by Valerie Cook. Again, if you have not written your questions in chat, please do so. So the next speaker is Daniel Broadney. Daniel Broadney is a professor in the Department of Philosophy and in the College at the University of Chicago. Additionally, he is a faculty member at the McLean Center for Clinical Medical Ethics and the Divinity School. Dr. Broadney has published in political philosophy, bioethics, and the philosophy of religion. He has been the recipient of many awards and fellowships, including the 2014 Quantrell Award for Excellence in Undergraduate Teaching. Today, Professor Broadney will be giving a talk titled, Philosophy at the Bedside. Please join me in welcoming Professor Daniel Broadney. Thank you, Tracy. Hello, everyone. It's great to be here today, even if it's only remotely. I want to begin by saying congratulations to Mark for being awarded the McLean Center prize, Mark. This is a wonderful and richly deserved honor. But what I really want to say to you, Marcus, thank you. 15 years ago, I crossed Ellis Avenue and began to work with the McLean Center. It's been not only a professionally transforming but also a life-transforming experience. Mark, you've taught me how to take the abstractions of academic philosophy and to bring them to bear on particular real-world ethical dilemmas, that is to take what might seem clear in theory and to try to bring it to bear to help with what is very much not clear in practice. You've also given me a set of marvelous new colleagues, people whose work I find extraordinarily impressive and inspiring. It's been a deeply enriching journey for me. Mark, I owe it to you. So again, thank you. Turning to my talk, if any of you can remember the pre-COVID world, I can barely do so. You might register that my talk today is related to the one that I gave at last year's McLean conference. This time I hope that I've gotten sufficient clarity on the issues that I was fumbling with back then. I've got no disclosures and I will not be using slides. What I want to do today is to gesture at a general question and then to focus on a specific one. In his remarks this morning, Mark said the following, now quoting Mark, every routine bedside encounter involves practical clinical ethical issues. I wholeheartedly agree. But such encounters often involve not only the application of ethical concepts to particular cases. Sometimes they seem to require that one resolve a long-standing philosophical issue in order to know the right thing to do in a particular case. So the general question I want to point to today is this, when must the clinician turn philosopher and solve a philosophical issue in order to do things properly at the bedside? The specific question I'll be discussing is, must the nature of practical reason be determined if we're to have a morally proper standard for decisional capacity? Now the best example that I can think of philosophy's bedside presence is simply our current norm that the patient gets to decide. This is based on several important philosophical concepts and arguably it is the conjoining of these concepts that makes it seem clear that patients ought to be the decision makers. I think it important that clinicians understand these concepts. The decision tree at the bedside is a moral, not a mechanical decision tree. Using it requires moral judgment and that requires understanding the moral concepts at issue. Here's a different kind of case. It's sometimes claimed that a person with sufficiently severe dementia is a different person from the person who long ago signed an advanced directive requiring that certain treatments be discontinued or not applied if she ever suffered dementia. In the philosophical literature there's a long debate about the criterion for being the same person over time. Is the proper criterion bodily continuity or the criterion psychological continuity? Continuity say of memories. If one opts for using psychological continuity as the criterion of personal identity then the advanced directive signer and the person with severe dementia might be different people since the person with dementia might have no memory at all of that earlier person. Physicians sometimes like this result because it means the person with dementia should continue to receive treatment since that is one assumes in her best interests. But the philosophical thought has to be thought to its end. If the patient has really become a different person then the hospital is no longer permitted to bill the insurance of the person who signed the advanced directive and certainly may not consider that person's children as surrogate decision makers for this new and distinct human being for whom the medical team is caring. Maybe that's what should happen. Maybe at the bedside you should spread your sales to the argument and let it take you where it will. Here I'm merely noting what follows from taking a philosophical issue seriously. My own view is that the bedside is not the right place to determine the nature of personal identity. This is an example where what I will soon call a strategy of avoidance should be the best route to take. I want to turn now to a situation in which it might be possible for the clinician to remove her philosophical hat. I say might. The end I'll note three ways in which in practice the philosophical question might be avoided. The example I want to discuss is the claim that the patient's values ought not to play a role in determining whether the patient has decisional capacity. It's often said that a test for decisional capacity does double duty. It's supposed both to identify a certain set of rational decision making capacities and to determine who should get to make her own treatment decisions. Presumably we want these elements to fit together. The usual thought is that we should not let a patient make a medical decision, surely not an important decision, if she doesn't satisfy some threshold of rationality. Now some writers say that any proper test for decisional capacity must be value neutral. Others deny this. If we look at it carefully this debate seems to rest on a long debated philosophical question about the nature of reason. And as I say the question is whether at the bedside that philosophical issue can be avoided. And many writers accept that decisional capacity is a form of rational capacity but then claim that values cannot be part of rational capacities. As an example Thomas Grisso and Paul Applebaum assert an interest quoting being a belief a value is not dependent upon logic or rational explanation. Other writers reject value neutrality but they also hold that to bring in values would be to go beyond rationality. For instance Torsten Brayden and Joachim Volman write that now quoting again, values, emotions and other biographic and context specific aspects should be considered when interpreting the cognitive standards. For them it's not that values are part of cognitive standards rather such things should be brought in as elements of a non-cognitive that is a non-rational approach. Traditionally philosophers have distinguished between two aspects of the human capacity for rationality between theoretical reason and practical reason. The first involves reasoning about the way the world is and about how to move logically from thesis A to thesis B. Science and math are the best examples, the standard examples. By contrast practical reason involves reasoning about what to do. The two areas are obviously connected. Any exercise of practical reason starts with the grasp of part of the world with how the relevant things are. Moreover practical reasoning must also move logically. Still determining how things are and determining what to do are different activities. The view of reason implicit in much writing about decisional capacity seems to be channeling one very specific strain the modern philosophical tradition that of the 18th century Scottish philosopher David Hume who in his work a treatise of human nature famously declares quote, it is not contrary to reason to prefer the destruction of the whole world to the scratching of my finger. Hume's claim is that a preference or desire is not the sort of thing that is properly assessed in terms of being more or less rational in terms of fitting with or being contrary to reason. To be sure one's desire can lead to an irrational action if the link between desire and action is a false belief or an invalid inference. I want to slake my thirst while remaining healthy. Here's a glass of clear liquid. I believe it's water and so I desire to drink it. The desire to drink water to slake my thirst is neither rational nor irrational but the desire to drink this clear liquid would rest on a false belief if the liquid turns out to be carbolic acid rather than water. My action as a whole would then not be a rational way to attain my desire to slake my thirst while remaining healthy. Hume's claim is that as long as I understand all the facts as well as all the cause and effect relationships my desire to do any given action cannot be either rational or irrational. It is simply a desire that I have. Something that is no different in terms of counting as rational or irrational from any other fact about me such as say how much I weigh. Hume denies that it's a possible role of reason to assess the content of a person's values any more than the content of her desires. He thus affirms what the philosopher Christine Korsgaard calls practical reason skepticism. Many clinicians seem just to subscribe to this view. Now I'm saying this I'm not claiming that clinicians have a conscious view about practical reason. I'm not saying that they've been staying up late reading the journal of philosophy or the philosophical review however my guess is that they've imbibed practical reason skepticism from many areas of our culture and especially from the academic social sciences. So I invoke such skepticism merely to make sense of a range of assertions by practitioners not to attribute a conscious theory to them. What's important to see is that practical reason skepticism is not only not obviously true in the western philosophical tradition it has been and continues to be frequently rejected. To mention a few figures none of Plato, Aristotle, Aquinas or Kant subscribes to it. Indeed it's been said that nearly all moralists before the 18th century that is before Hume regarded reason as the organ of morality. Now none of that means that practical reason skepticism is false. The view certainly has supporters but to support subscepticism you need to make a philosophical argument. Something seems very amiss when practical reason skepticism is not argued for but merely assumed to be true and then plays a significant role in the formulation to test for capacity. Here I take no position on the substantive philosophical issue. Those issues are tangled since there were several plausible non-sceptical accounts of practical reason. My point is that in thinking about whether values are relevant to decisional capacity the clinician needs it looks as if the clinician needs to wade into a long-standing philosophical debate. She can't merely posit the truth of one side of that debate. Let me now make a brief parenthetical point. Despite affirming practical reason skepticism at least some practitioners can't keep from saying that certain values are in some sense against a reason. For example in an article on patients with anorexia nervosa Jacinta Tan writes now quoting clearly an assessment of competence cannot presume that any particular set of values is superior to any other. So here we see the insistence on value neutrality in effect on practical reason skepticism but Tan soon introduces the concept of this is her phrase of pathological values say valuing being extremely thin more than continued life. The concept of pathological values is invoked to argue in a particular case that the patient lacks decisional capacity. Yet the argument's ostensible key move rests not on the content of the patient's values but on purely formal consideration. Tan points out that in the case it issued the patient's values have changed dramatically from valuing extended life more than being thin to valuing being thin more than extended life. Tan urges that if a patient's values change sufficiently quickly is justified to conclude that the patient doesn't have decisional capacity. Here it looks to me as if Tan is trying to keep to practical reason skepticism while also putting a thumb on the scale with regard to which value is pathological. Keep in mind that the focus here ostensibly is on the change from normal to pathological values but that focus presumes that certain values are intrinsically problematic that is pathological. Moreover suppose the change in the patient's values were from valuing being thin over extended life to valuing extended life over being thin. With that change I doubt that anyone would worry about the patient's decisional capacity. On the contrary we'd be tempted to say that the patient had shown that she does have capacity. In actuality the capacity worry here is driven not by the change in but by the content of the patient's values. Conclusion that the patient does not have capacity is in fact not value neutral. Now other cases have this form and I could mention some in the Q&A. What in effect happens is that the clinician gets to a defensible outcome via a logically problematic route because the clinician is ostensibly committed to practical reason skepticism but her own good sense invokes the unreasonableness of the patient's values as part of capacity determination at one point Grisso and Applebaum themselves do this. So where have we reached? Analytically it looks as if one cannot decide whether the patient's values should be part of a decisional capacity assessment without first resolving the philosophical question of whether values can be rationally assessed and it looks as if despite the affirmations of practical reason skepticism some clinicians act as if sometimes values can be rationally assessed. So instead of illicitly just assuming the truth of practical reason skepticism should physicians be diving into the deep philosophical waters yet when the philosophical debate is in fact such a live one how can it make clinical sense to base clinical criteria on just one philosophical view that is to be based clinical criteria on a view that holds either for or against practical reason skepticism. So there's a dilemma. Must the physician become a philosopher? Is there a way for her to avoid doing so? As I see it there are three ways out of this particular dilemma. We can call them three strategies of philosophical avoidance. They are intended to make it unnecessary to resolve a philosophical issue before one can make a morally proper decision at the bedside. I'm listing strategies with regard to the question of decisional capacity but they are intended to raise the possibility of finding analogous strategies in other contexts. Of course the key point is that to find a strategy of avoidance one must be aware that there's a philosophical issue that one is trying to avoid. So here's the first strategy of avoidance. The criminal law assumes that it's better to let 10 guilty people go free than to jail one innocent. So both we believe that it's worse mistakenly to deny capacity than mistakenly to affirm it. This thesis would have to be defended but assume we have successfully argued for this asymmetry. We might then say that regardless of the philosophical facts we will get better overall outcomes if we eliminate values from capacity determinations. Analogous to protecting the innocent even if the guilty go free we exclude values from capacity determinations even if this means in practice we will say that some patients have capacity who actually don't. Thus letting them make what might be very bad medical decisions. Here's a strategy of avoidance two. It also invokes a parallel to a criminal trial. In a criminal trial there are safeguards to try to prevent the innocent from being convicted. One crucial safeguard is that jurors must use the standard of beyond a reasonable doubt. This is more demanding than the weak standard of the preponderance of the evident evidence. It's even more demanding than the somewhat stronger clear and convincing standard. Perhaps any physician who says that a value judgment is so unreasonable that the patient should be denied capacity would have to make a compelling case for this claim. Would have to satisfy a compelling standard something at least as compelling as the clear and convincing standard. Finally strategy avoidance of avoidance three. This rests on the following empirical assumption. In practice despite what clinicians might try the patient's values are inevitably included in a capacity assessment. In practice therefore the philosophical debate is moot. The practical issue is how to include the patient's values in a morally acceptable way. There are some writers for instance Fabian Fry and Hagen and Tom O'Shea who have already taken this route. My own preference is for the second strategy of avoidance. Don't preclude the use of value judgments but make sure that any invocation of value judgments to deny patient capacity makes a very high standard. That's however just my view on very eager to hear what clinicians will think of this. Thank you. Hello. Again I'm just reminding everybody to include questions for anybody in the group in the chat. So the next one is Dr. Naranjan Karnak. He is the Cynthia Ouija's Harris physician professor in the Department of Psychiatry at Rush Medical College and a conjoined faculty member in the Department of Community Systems and Mental Health at Rush College of Nursing. He is the Associate Dean for Community Behavioral Health at Rush Medical College and is charged with working with community leaders on the west side of Chicago to develop a strategy to address mental health and substance use needs in the local community. At Rush Dr. Karnak is also the senior advisor for the Road Home program which is the national center of excellence for veterans and their families which serves veterans in Chicago and nationally. The program provides high-level mental health care to veterans and their loved ones to decrease PTSD and allow families to reunite successfully. His research focuses on community-based interventions for high-risk youth with psychiatric and substance use disorders. His talk is going to be how to have theory in an epidemic of data, drug systems, and rapid innovations. Please join me in a warm welcome to Dr. Naranjan Karnak. Thank you Tracy. It's really nice to be here today. I should preface this by saying that as many of you have doubtlessly experienced and have been part of the McLean conference before, the invitation for this comes from Mark often much, much earlier and I want to congratulate Mark today as everyone has been. It's a wonderful thing and I have a couple comments about Mark that I'd like to get to but in my case the email from Mark came in the middle of March and I had just returned from a brief sabbatical at University of California Los Angeles and I had sort of raced back to get into Chicago before the first lockdown took place and was sort of just getting settled in, working with my team, trying to get everybody organized, you know, to a new set of conditions that we were dealing with and I get this very sweet email from Mark saying would you consider speaking at the McLean conference and I thought what am I going to speak about other than, you know, this nightmare of a pandemic that's unfolding so as many others did today and yesterday I chose to do this. Mark is really a guru in many ways and I think you will, you know, understand that term from Hindu and Sanskrit. A guru is more than a teacher. A guru is a master. A guru is someone who guides you as he has guided so many of us in our careers. I count myself lucky to have had four gurus in my career and Mark is one of those four and a relationship between a student and the guru really goes much deeper than anything, you know, short of your parents and in some ways it is a lifelong relationship and I know many of you will share that feeling that I have towards Mark with me. The one thing I will criticize Mark for is that he should warn you when you are going to come to the McLean conference and find that your entire talk has been scooped by Harold Pollock and as usual with Harold and my loving relationship with him this is doubtless what has happened today. So with that I will go forward into this talk and I will also just give one caution to say that never ever let your husband in my case Dennis Smith Henry convince you to allow him to move your house on the day that the McLean conference is happening. The only upside of this is the screens that you see behind me were left by the previous tenant of this house. So with that I'm going to go into this talk. This talk is actually a hat tip to one of my other gurus, Paula Trakler, wrote a book and I'm going to present a little bit from her book some years ago about how to have theory and epidemic and in that case the epidemic she was referring to was HIV. But first the obligatory conflict side I'm blessed to be conflicted and to have resources to do much of what I do. A lot of this work you will see connects to people who are part of the McLean Center, Laney Ross and Harold Pollock and you know much of what I'm going to talk about is actually new work, relatively newer thread of work for me other than you know what Tracy described at the beginning. So I'm fortunate to work at Rush University and at the Rush Hospital. For those of you who have followed the first wave of this epidemic you will probably have seen headlines like this about Rush that you know we as an institution have leaders who foresaw in some sense not this particular epidemic but the potential for a significant epidemic, a mass casualty event and they designed the hospital when they rebuilt the new tower building to handle this to account for this after 9-11. At that point they were debating things like the Sarin attack and you know potential mass casualty events like that and they basically designed the entire hospital that all of the rooms in the hospital can be converted rapidly into ICU beds. And this includes all of the lines and pressure and you know fluids that you need you know all the pipes are built into the walls of the building and are easily accessible to transform each room into a single occupancy ICU bed with negative pressure if needed. This foresight had not been tested until COVID-19 and in the midst of COVID-19 at least you know up until the point of the first wave of the epidemic Rush absorbed 20% to 25% of the cases of ICU cases for the state of Illinois and you know University of Chicago did remarkable things all of the hospitals in Chicago really stood up but the the ability of our hospital to do this really was amazing and I have to say that it is it is a blessing to work in a place with leaders who who are willing to take this kind of step to to because there is no financial gain here contrary to what some politicians are saying there was there was absolutely it's a financial losing strategy to take care of patients in this point in time and I will reference you to Harold's talk for for much of the logics around that and the details around that but as we think forward in this and and think about this kind of innovation you know you will have seen some of these headlines that here that COVID-19 will worsen the opioid overdose crisis was one of the early signs this was written in March more recently you know AMA puts out you know that that it has indeed happened that things have gotten worse and that you know the overdose spike has happened so we had been in the midst before COVID-19 of a large epidemic of opioid misuse and and drug misuse more generally and actually the federal government had spent significant resources to address this and we were seeing mortality reductions over over time until COVID-19 and COVID-19 and I would be curious to hear you know other people on the panel's views my my assessment is that COVID-19 has largely undone many years of work in reducing mortality and morbidity around substance misuse and we're sort of back to square one in some ways but there are a couple things that have happened in in between so why why is this significant and why am I coming to the point of thinking about this so as is the case sometimes you get pulled into new lines of research by your mentees and in this case I got pulled into the world of data science and informatics by one of my k-award mentees Majeed Afshar Majeed is a very bright critical care doc specialist and he connected with me some years ago and had already been awarded his case and said you know will you be one of my mentors and help me with this you know I really want to kind of take this forward into a place where we can impact things and some of the work that I've done at rush was relevant to to what he wanted to test and I said sure so Majeed started on a road with me and you know started basically I started learning through him about natural language processing and machine learning and the way that these tools can be used to identify patients and this you know in turn led to you know reconnecting with Harold around this and thinking about next steps in this line of work but we've been looking at opioids and alcohol and developing digital classifiers to try and automatically identify these patients in in hospital settings in order to provide them with services and to phenotype them and to better characterize you know who these patients are what are the supports and services that they need and how best to get those treatments to them and so this this line of research really is a credit to to Majeed in many ways and has gotten me to think about this and we've recently written a paper on some of the ethical issues around this because one of the things that we found in in our work is that their their the work draws broadly from existing sources administrative data electronic health records we use both structured and unstructured data so structured data are traditional things that most people think about in terms of data labs you know numbers you know results that are quantified in the medical records and we're using unstructured data narrative image data the interpretation of image data and and and pulling those together in in in a way the advantage is to data science approaches to to both epidemics and here I refer to the substance misuse epidemics and to the COVID-19 epidemic is that you can get substantive sign and scope in terms of what you're doing but in some ways the goals of this might be less defined or clearer than traditional clinical trials or traditional structured research data it's this is a lot of massive data that may be somewhat dirty or messy if you will early on I brought my interest in health equity and health disparities to this conversation and noted to to Majeed that a lot of these sources have bias embedded in them structurally embedded in them racism sexism you know bias against disabled populations bias against you know all types of minority populations lgbtq populations this can be cooked into the process in other words if you're a patient who basically you know suffers from discrimination in the world and if you go to a hospital which captures some of that societal bias you may indeed then you know encode that bias into the narrative and the more subjective portions of the electronic health records so this has come true in some ways when we look at this so there are there are some very big name cases where racial bias is found in a widely used healthcare algorithm that basically you know it favored white patients over sick or black patients and and basically confounded thinking about things in in a few ways and and this this you know insurance algorithm that was used by a number of hospitals and and you know affected you know several many millions of patients across the country you know really did damage to the field I think in some ways and and but was emblematic of what can go wrong in this so that brings me to this consideration why do you need to have theory in an epidemic so this is a quote and I'm going to read this quote just because I think it's very important to think about it this quote comes from Paula Trichler's book how to have theory in an epidemic and she writes of course AIDS is a real disease syndrome damaging and killing real human beings because of this it is tempting perhaps in some instances imperative to view science and medicine as providing a discourse about AIDS that is closer to its reality than we can provide ourselves yet with its genuine potential for global devastation the AIDS epidemic is simultaneously an epidemic of transmissible lethal disease and an epidemic of meanings or signification both epidemics are equally crucial for us to understand for try as we might to treat AIDS as an infectious disease and nothing more meanings continue to multiply wildly and an extraordinary rate by analogy I am arguing today that COVID-19 and the substance misuse epidemics are likewise epidemics of signification and we need to pay attention to it nothing in in our popular world could be more true than what we see in the politics of wearing masks today than it being an epidemic of signification this has nothing to do with the epidemic of the infectious disease this has to do with COVID-19 being posited as nothing by politicians who have used symbology and use the ability to define signifiers in a way that has been and deadly for this country and globally so this led us to working on this as a first step in in this discussion this was just recently published you know on structural disparities in data science and we posited that you know true attention needs to be paid to health equity and health disparities at the forefront of thinking about data science work and machine learning and I think these are my recommendations one I think that we should assume you know theory tells us that biases exist and they're being propagated multiple biases two that we have to act early to ascertain these biases and examine them especially when we're doing data science and machine learning work three we need to have a collaborative multidisciplinary team including health disparities experts as part of the work that we do Harold Mijid and I have kind of formed a collective team that I think you know represents some of this type of approach and and I think we've brought in other experts and consultants to help us further broaden this team next I think we have to check biases iteratively and ideally using multiple tools you know don't assume just a single check is going to be sufficient to to to be you know to address this you have to keep doing this over and over again and then we have to develop a mitigation strategy for addressing biases and this can take a couple forms it could be a computational approach so adjusting the data to better account for this bias that might be there but it could also be more structural and systemic in its approach and and I'm happy to think through that or discuss that further when we get to the Q&A finally we have to constantly consider ways to address core issues that are driving bias is it our workforce is it our training is it other societal factors or political factors that are part of this and I do think Harold touched on this very nicely in some ways and then earlier today I think you know John Lantos was talking I know to some extent about this as well so these these are the thoughts that I have around this and I thank you all for your attention today thank thank you very much Naranjan and again I'd just like to remind people to ask questions as well as if you see a question you really like put a yay sign beside it and we will give that one more points and then that way that one will come to the top of the list so the next person is Lynn A Janssen who's the inaugural holder of the Madeleine Brill Nelson Chair in Ethics Education at the Center for Ethics and Healthcare at Oregon Health and Science University before working at OHSU Dr. Janssen was the director of the John J Conley Center for Medical Ethics at St. Vincent's Hospital in New York City and the director of the Bioethics Institute at New York Medical College Dr. Janssen is the principal investigator of a five-year R01 grant funded by the National Cancer Institute designed to study the impact of the optimistic bias on risk benefit assessments by patients and subjects who enroll in early phase cancer trials today Dr. Janssen will give a talk titled informed consent and medicine what does autonomy have to do with it please join me in giving a warm welcome to Dr. Lynn Janssen I thank you thank you Tracy and thank you Mark for inviting me to be a part of this very special conference so in this in this brief talk I want to revisit an old topic in clinical medical ethics the topic is the principle of autonomy and its relationship to informed consent I want to articulate some doubts that I have about the significance of autonomy in this context others have expressed similar doubts before one thinks for example of Daniel Callahan's memorable paper when self-determination runs amuck but I'm going to present my doubts in a distinctive and I hope compelling way now I should say upfront that I think much good has come from the so-called rise of patient autonomy in clinical medicine I am not going to be recommending a return to the paternalistic past I'm also in favor of informed consent in medicine but I think a plausible doctrine of informed consent can be justified without any appeal to the principle of autonomy I should also say upfront that I am concerned in this talk with informed consent for clinical medicine not clinical research as I argued in my talk last year at this conference I believe we do need different models of informed consent for medicine and research so today I'm just focusing on informed consent for clinical medicine and the view that I want to propose is bold and perhaps it's too bold at the end of my talk I will express some doubts that I have about my own view but I think it's instructive to see how far one can go in justifying a plausible doctrine of informed consent without making any appeal to autonomy so my view departs dramatically from what I'm going to call the standard view and this is the view that's articulated by Beecham and Childress in their standard textbook on medical ethics now this view holds that the point or of informed consent in medicine is to respect individual autonomy the standard view is very routinely and commonly expressed in the medical ethics literature in a recent paper Beecham backs a step away from the standard view he can see that informed consent in medicine may serve other functions as well but he insists that respecting autonomy is the most important function has in his words the highest priority as a value underlying the practice of informed consent so let's just call this the qualified standard view and it holds that the most important function of informed consent is to respect individual autonomy now I think that both the standard view and the qualified view are false the view that I want to defend is theoretically interesting but it also has some practical implications the standard view leads us to worry about parts of our practice of informed consent that we should not be worrying about what I call routine consent is fine for routine medicine even if routine consent is not sufficient for patient autonomy the standard view also leads to a problem that it cannot resolve and this problem can lead to bad consequences as I'll explain so our inquiry here into the values that justify the practice of informed consent is important practically and not just theoretically so if informed consent is not justified by respect for patient autonomy then what might justify it well let me start with an idea which I will call Hippocratic Consent following the lead of Robert Beach this view of informed consent grounds it in the duty of beneficence in theory the idea of Hippocratic Consent is simple and straightforward sometimes a physician will need to get informed consent of her patient so as to ensure that she is providing the patient with the best care in these circumstances to discharge the duty of beneficence to her patient the physician must secure her patients informed consent well how robust is Hippocratic Consent how is it engaged in in clinical practice well these are not simple or straightforward questions simplifying greatly we can distinguish what I'll call routine medicine from what I'm going to also call deliberative medicine so there's not a sharp dividing line here it's just a continuum with routine medicine at one end and deliberative medicine at the other now routine medicine a physician can treat her patient beneficently with minimal informed consent with deliberative medicine a physician must secure a more robust informed consent to discharge for duty of beneficence to the patient now a large part of medical practice I believe is routine medicine robust informed consent is not necessary here to provide good care to the patient but there are important areas of medicine that fall under the deliberative medicine these are areas where so-called shared decision making between the physician and patient are called for well perhaps I'm mistaken in viewing routine medicine as the norm and deliberative medicine as the exception certainly Robert Beach has made a career out of arguing that in actuality almost all of medicine is deliberative medicine but I'm not persuaded by Beach I think physicians often do know what is best for the patient and that the patients standardly want the physician to prescribe appropriate treatments to them with no need for shared decision making but notice if I'm wrong about this it only helps my argument my view in short is that routine consent is appropriate for routine medicine routine consent is low grade informed consent if you like disclosure of risks and benefits may be called for but it's fine if the patient signs the consent form without fully reading it for example by contrast the kind of consent that's important for deliberative medicine is much more demanding it requires understanding and appreciation of relevant information but with deliberative medicine beneficence explains the value of the practice there's no need to bring in autonomy at all at this at this point notice that if respect for patient autonomy justifies the practice of informed consent and medicine and we actually should be worrying about routine consent routine consent falls well short of what is needed for autonomous consent however Hippocratic consent justifies the practice and we shouldn't be troubled at all by routine consent at least not in the context of routine medicine now Hippocratic consent patients sometimes do not want the treatment that would be good for them and they have a right to refuse unwanted treatment this right cannot be explained by the duty of beneficence to explain the right to refuse unwanted treatment though it's widely thought that now we have to appeal to this principle of autonomy but I want to suggest that this is incorrect the right to refuse unwanted treatment is actually a consequence of the more general right of bodily integrity and one can accept the right of bodily integrity while rejecting the principle of autonomy so once the point is put in these terms it seems hard to deny autonomy requires more than just respecting a person's right to control what happens to his body in fact you know there's a look there is actually a large theoretical literature on autonomy with many competing conceptions of it but a common theme is that autonomy requires more than just being left alone by others to be autonomous we need opportunities and options to fashion a life for ourselves further there are reasons to value bodily integrity that have nothing to do with autonomy after all unwanted trespass on one's body is assault or battery and one can think that assault or battery is bad and morally wrong without thinking autonomy has any value at all here's another way to see the point in some areas of life autonomy is just not a concern when I go to the grocery store for example I'm confronted with over 50 options for toothpaste if I'm not allowed to choose one of these options then my autonomy is not set back one bit but if you restrain me when I reach for one particular few of toothpaste then you have certainly wronged me you've invaded my bodily space so perhaps routine medicine is like this it's not an area where autonomous self fashioning is an applicable value still physicians must respect the bodily integrity of their patients this explains why routine consent is required in these contexts it also explains why if a patient rejects beneficent medical treatment from her physician he better respect that decision so the two parts of my argument right hypocritic consent and the right to bodily integrity neatly complement each other for when a beneficent physician encounters a patient who refuses treatment that is good for the patient the physician will want to make sure that the patient's treatment refusal is informed he'll respect the patient's right to refuse treatment but he'll want to make sure that the patient knows what she's doing when she rejects the treatment so you know the right to refuse treatment is a negative right you know you may be saying well isn't access to health care a positive right and if so doesn't a patient have a right to receive treatment that she wants even if her physician thinks that the treatment is not good for her well if the answer to this question is yes and i think we'll need to appeal back to this principle of respect for patient autonomy for this kind of medical provision cannot be justified by the physician the duty of beneficence indeed it runs counter to it and nor can it be justified by the right to bodily integrity for the right to bodily integrity does not give one a claim on the assistance of others but in fact the answer the correct answer to the question that i just posed is not yes it's a definitive no the physician is not there to provide his services to the patient for whatever ends the patient seeks to advance it's a it's the patient's wants a medical procedure that the physician rightly judges is not in the patient's best interest and the physician should not provide it it's the patient objects and the physician should just tell the patient that he is subject to a moral and professional duty of beneficence the need to respect patient's wishes in this case does not require him to violate this moral duty so it's a virtue of my view then that it handles this kind of case well the the case where the patient autonomously desires treatment that the physician shouldn't provide by contrast i think that the standard view that that view that autonomy underlies the practice of informed consent really struggles here for the standard view we'll need to say that the physician confronts a conflict in this case she has a duty to respect autonomy of her patient on the one hand and she has a duty to promote the patient's best interest on the other now of course this proponents of the standard view can say in this kind of case that the duty of beneficence takes priority over the duty to respect patient autonomy and this is this is an option i do grant but if this is what we say and if this is what we teach our medical students in our ethics classes then we shouldn't be surprised when they ask well why autonomy takes priority over beneficence in the refusal case but beneficence takes priority over autonomy in this kind of case and i'm not sure that the standard view has a convincing reply to this question the view that i've been proposing however easily explains the situation here as i've already explained uh this right to refuse uh beneficent care is grounded in the right to bodily integrity that right does not extend to the problematic case so there's no conflict between it and the physician's duty of beneficence where the standard view finds conflict my view straightforward yields the right result so i have outlined a defense of the practice of informed consent that makes no appeal to the principle of respect for autonomy the defense appeals to two key notions uh hypocritic consent and the right to bodily integrity this account of informed consent can explain why so-called shared decision making in medicine is important in context where it is important and it can explain why the duty of beneficence is not in conflict with the patient's right to refuse unwanted treatment but despite its virtues the account i have outlined will no doubt provoke doubts um have i left out something important is something um important unaccounted for or have i failed to see the role for autonomy in the practice of informed consent these are these are all good questions and in thinking of them i you know i i just asked to stop and think about this advanced care planning in medicine and this is an area where it might be thought that we need to invoke the principle of respect for autonomy uh when considering how a patient should be treated at the margins of life when she's lost decision making capacity or is nearing death uh the the issue of her well-being receipts it becomes more important to think about how she should be treated if she is to be honored and respected there is i grant something right about this concern but notice what must be true for it to constitute a problem for my view um we would we would have to think that patients using advanced care instruments have rights to direct their physicians to provide them with medical care in the future that is not in your best interests and i doubt that patients have rights to do this although i certainly believe that they have rights to use advanced directives to limit the treatment that they will be provided in the future uh but perhaps there are some special cases where physicians have a duty to provide care that is not in the interest of the patient because the patient autonomously desires it um these would be special cases on the edge of standard medical practice i think uh for this reason the view that i propose like the standard view might need to be qualified respect for patient autonomy we may need to allow is one function served by the practice of informed consent uh this qualified view version of my view still is in conflict with the standard view and the qualified standard view um reversing beecham's emphasis it would insist that respect for patient autonomy if it has a role to play does not play a starring role but is at most a supporting cast member in the narrative that justifies the practice of informed consent in medicine thank you very much thank you very much um our last speaker but definitely not the least important for the day and for the program is dr ronjanus revistava who is an oncologist is actually um currently on her second full bright scholarship at harvard kennedy school of government and an award-winning author from mailborne australia where she is actually coming from for her talk today she's a regular columnist for the guardian newspaper where she writes about the intersection between medicine and humanity and a frequent essay is for the new england journal of medicine she's also written many books related to health and medicine she appears frequently on tv radio and as a public speaker addressing various topics and events dr revistava's books include dying for a chat the communication breakdown between doctors and patients so it's cancer now what after cancer a guide to living well a cancer companion an oncologist's advice on diagnosis treatment and recovery and what it takes to be a doctor in 2013 dr revistava received the australian human rights award and in 2017 she received an order of australia metal for uh for her role in oncology and improving the doctor patient communication please um her talk today is a full bright award i think it is her first award and an accidental ethics fellowship the making of a physician please join me in giving a warm welcome to dr ronjanas revistava good morning from melbourne everybody and it's a shame that we we can't be in the same room together but thank you to mark um and the faculty for inviting me to speak today uh when mark asks me to talk each year i'm always um i always say yes and then i'm struck with um with anxiety because i did not turn out to be an academic like most of you who are listening and so i'm always scratching my head as to as to what i will actually say um i decided to call my talk the accidental ethics fellow because i think many of your lives have probably been a lot more planned than mine what happened in 2004 is that um my husband decided to have an early careers uh an early mid career crisis mid life crisis that's the word i'm looking for it's morning in melbourne um and suddenly i was left to figure out what i would do as he went to chicago to fit to leave medicine and do an mba at at north western at the kelloch school and so i applied for a full bright um thinking well that might help me decide what i'm going to do for the year that i might spend there and then i looked around to see what i could do and my husband said there's this amazing program at the university of chicago called the mclain center for clinical medical ethics do you want to have a look at that uh and that's how i ended up applying to the center to say well that seems like a wonderful way to spend a year on a full bright and i would say that my time at the mclain center proved to be the most transformative event in my life um i think it really allowed me the space to reflect on what it is that i wanted to do in medicine uh it gave me some time away from clinical medicine which was a good thing um and it made me the person i am today so i'm incredibly proud to be to be connected to the mclain center although um perhaps much to marx grief i never ended up writing an academic paper in my life and it's not about the change i think so today i'm just going to take you through um through what i have done with my life since i finished at the mclain center um as uh as as tracy said i'm an oncologist and um i have ended up starting my state's first geriatric oncology service at my hospital which is something i deeply love because it it it connects my my world of internal medicine and oncology very nicely and i truly enjoy doing that and so that's what i do as a day job but that's not what i'm here to uh to talk about today uh i i do write for the new england journal of medicine which is something i very much enjoy perhaps some of you have have read the pieces they are all in the perspective section um not not not academic but things that i have reflected on over the course of a medical career tracy has mentioned several books and my first book tell me the truth was published about three or four years after i uh came back from chicago after we returned from chicago it was a it was a big event in my life i had always dreamt about writing a book and and didn't know that i could until i until i came back um these are some of the other books that i've that i've written and thanks to mark one of the books a cancer companion was actually published through the university of chicago press which was which was lovely um um my most recent book a better death was was published last year and and that's a book that i wrote after being in oncology for 20 years and sort of really contemplating um sort of the lived experience of my patients around around life and death and around what it is to die well and and certainly that issue has been with us very much uh during the pandemic what dying well actually means so that's been quite a satisfying thing to do but the thing that i'm going to talk about most is my writing for the guardian because i stumbled upon this uh when the guardian came to australia several years ago now uh in 2013 um and then decided the guardian eventually decided after a lot of pestering to uh to let me write for them and i thought it might be a you know uh once every now and then effort until uh one day they decided to make me a regular columnist and i decided to talk about this because i feel like it's really been a wonderful platform from which to talk about some of the things that are important to us in this audience but to a general to to today's audience but to a general public um and that's taken a different tax to uh instead of writing writing in academic journals i'm just going to take you there are written hundreds of columns now over the last six years of being a columnist um uh alternative medicine and oncology is a vexed issue and this was this was one of my columns that that as you will see did particularly well around the world because i think alternative medicine is never too far away from the minds of oncologists and their patients and unfortunately uh we we kind of live in uh we live in different planes alternative therapy providers and oncologists and so this was a column discussing uh discussing why we don't talk and and how we regard each other this was written from uh from one of the oncology conferences asco in chicago where every year there are breathless reports of another miracle uh cure in in oncology and while oncology has certainly come a very long way i'm always conscious about what we say to our patients and the impact that it makes uh our words have on our patients um as i began writing for the guardian i became a little bit more assertive in in what i wrote about so i would say that i started off by writing a lot about how i felt and over the years i have evolved into writing about how we should act um and here these are examples of columns where i've dealt with racism and hierarchy um children in detention australia has had a particularly harsh policy against refugees and asylum seekers which has caused a lot of grief in the in the in society and so i've sort of stuck my neck out and written about other issues as as time has has gone by the pandemic obviously brought forth a series of columns on the on the pandemic and in particular um this this column here i found a difficult one you know to give somebody news about a poor prognosis or a terminal illness via zoom uh is is not something that i think most clinicians had ever imagined they would be doing and it's been particularly uh difficult to to accompany patients on on those journeys during the pandemic uh so my my phone keeps turn um when i came back from she i should preface this this statement by saying that i have three lovely children but when i came back from chicago from my mclean fellowship i was pregnant with twins and i ended up losing both of them at an advanced stage to uh to to something i'd never heard of in the fine print of medical textbooks and uh ten years after i returned from chicago i decided to write about this because it felt appropriate to uh to to write about what i had learned about being a doctor from my own experience of loss and to this day i'm very touched by that the number of people who write to me from from time to time about how reading this column helped them process their own grief or helped them help somebody else in this situation so i feel very proud that a column that i really wrote perhaps for my own um for my own recovery in a way has made a difference to the wider world um talking about ethics but ethics from uh from a public perspective so this was one that as you can see drew 519 comments should i revoke the license of an older driver or not uh we all see in our clinic patients who we think that perhaps they should not be driving they're not safe to drive i don't know what your regulations are there but in australia uh you can report your concerns to a central authority who then reaches out to the patient but sometimes it seems very mean to do that when people are reliant on their car and can't access public transport and so on so so these are some other examples of columns you know should a doctor always disclose a terminal diagnosis is something that that we all think a lot about and how to do that how to tell the truth so these are some other columns that i've that i have written again nearly 500 comments so they certainly engage a lot of public comment and debate which i think is a good thing and and i guess that's why we learn and teach uh and engage so that we can stimulate debate in the public um i was very fortunate this year and also a couple of years ago that a few of the columns that i have written um a set of three were nominated for australia's highest uh journalism award i'm not a trained journalist i started writing as a um as a kid and i've continued to write but but you know it does it does make me feel good that people who have not formally trained in journalism but who have something to say uh can be recognized uh by a different category of awards than one would normally expect um i was very grateful when i got into medicine i think medicine has been gift enough uh these awards are to be announced uh in a week's time so so we will see what happens but it's wonderful for the writing to be recognized because it suddenly takes a lot of time to to write each column um some of the other things that my writing has allowed me to do is uh is is host some some event so so this is the wheeler center in melbourne which is a center for literature uh this is my good friend kate richards who actually left medicine due to uh severe bipolar disorder and she wrote the most amazing book which is called uh madness a memoir if you get a chance to read it and this is a this is an example of bringing mental health to a mental illness to a general public by interviewing her about her experiences uh and learning from her um perhaps one of my favorite things to do has been to be a box bomb scholar uh that mark appointed me to and this is uh this is us speaking at the university of chicago in delhi which was a wonderful experience and really allowed me to to take my message sort of beyond the newspaper and beyond australia to to india and to our indian colleagues which was which was a wonderful experience and i encourage any of you who are invited to uh to take that up uh if there is a time to travel again as tracy mentioned uh that was my first full bright scholarship i feel like i'm still uh i'm still looking for direction in some way so after 20 years of uh being a front line oncologist i applied for another full bright scholarship uh and this time i am studying for a masters of public administration at the harvard kennedy school um and there's a big question mark about about what i will do with that degree i intend to pivot my career towards uh policy and potentially elected office um but when i went to chicago similarly i had a big question mark over my future of and and as it turns out it took many years but i did find my feet and so um generally speaking i'm looking forward to the next several years to see where where this degree lands me i'm nearly at the end of my talk and i would like also to congratulate mark uh this is this is actually a picture taken at one of the former fellows conferences um i would like to congratulate mark and also thank you mark for the wonderful mentor that you have been i've certainly not followed in line with many of the other mclean fellows who have done amazing things but mark has written me countless references and been incredibly patient and generous and shown such remarkable good will that that it really is one of the best accidental career moves i made to say well this mclean center sounds like a good idea let's check it out while while i'm living in chicago so i am uh incredibly grateful and have always since then believed in um in taking side routes in your career because who knows where it will uh it will end it will land you and um my final slide is in recognition of bill meadow many of you will will remember bill uh as a neonatologist sadly we lost bill in 2019 um and in particular i would like to remember bill because he was the first person at the mclean center who said to me um something that only bill could say he was i said oh bill you know i feel like i want to write a book and he said you want to write a book of course you can write a book um you know there's a book in you and i'll never forget that those words carried me through uh when i came back to australia and when i thought about writing a book bill's words stayed in my mind um bill bill remained an avid supporter of my writing uh when he would see a guardian column uh they come out fortnightly there's a lot of columns to follow uh he would send me a quick note about some of them saying that this particular column touched him or or you know it really made him think and uh and unfortunately i had many opportunities including two years ago when i was traveling to chicago to tell bill uh how much uh his words and how much his enthusiasm and his support meant to me so um yeah it's it's it's a shame that bill is gone but certainly uh he remains in many of our memories and with that i'm at zero and and i'll stop thank you for listening thank you very much we are now going to start questions i just want everyone to know that there's lots of questions now that we will never get through i'm sure we're going to be given back an additional 15 minutes but we're still not going to get through everything um the one general statement to all the speakers um is that everybody thought you were wonderful and for the people that did a talk that was sort of on a topic if it is published if you could send um you know if you could send someone at the center your paper um or if it's in publication what where it's going to be published um that would be wonderful um and so i will start on the questions um so will parker who's one of the current uh who's actually one of the current junior ethics tendings um ask the question to valerie although others may also have answers please discuss the legal implications in states with explicit protocols um versus states that leave details up to hospitals and i think this has been and he lists that new york pennsylvania and maryland have explicit protocols and the state of illinois is one of the states that's been dealing with these hospital level protocols versus even city-wide uh right well it's a it's a really important question it's something we're all grappling with um to be clear no state really has implemented a protocol yet um although there was talk of it and in certain areas of texas a while back um new york for example governor komo actually you know it's just about the ventilator allocation guidelines that i helped spirit get get out the door um and a lot of that i think was because of concern about um accusations of uh you know of um death panels and making decisions about who should live and who should die and so making an explicit statement of hey we have this plan and we want to implement it if circumstances demand it um was not really politically palatable i wrote about that in the an a-job issue a little while back um but i would argue that i think it makes a lot more sense to at least have a statewide plan that is implementable at the individual institutional level and if you have a plan that is held up by the governor by the department of health whoever it is to say we don't want to implement this we are going to do everything we can to avoid implementing it we are going to coordinate care we are going to share resources we are going to transfer patients we're going to do all of these things but if we absolutely have to we are going this is what can be instituted we stand behind this plan as a state um then you have transparency you have consistency across institutions which i think would have enormous impact um and again you were not i'm not i'm i'm not advocating for implementation unless absolutely necessary but it would it would also potentially avoid help avoid health disparities because individuals this started happening in new york um individuals with resources began to become aware of what individual policies were at institutions and would if a family member became sick they would choose which hospital to send their family to based on what they thought whether they thought they would get a ventilator or get a dialysis machine or get whatever it is that they thought they needed um plus i think this transparency at least if you have that plan out there at a state level then the public knows about it and if the public knows about it and they understand what could be implemented if if circumstances become dire that could lead to lower rates of malpractice because people are going to understand this is what's going to happen right it's equal it's even it's egalitarian it's the that it's being implemented in a way that seems understandable um rather than showing up to the hospital being denied a ventilator when you think you're going to get one and being surprised by that and then having and then feeling the need to sue based on that information or that denial anybody else have a comment on that please don't make a brief comment oh go ahead okay hailed all with first the um just on a parallel on a parallel track there's so much attention to the rationing of ventilator resources as opposed to broader questions about the capacity of the critical care system and to make sure that every patient has access to the basic resources you know that are that are provided with basic proficiencies like icu pruning to make sure that that icu's have the capacity and the staffing to just to to do things that will lessen the probability that will really run into a shortage because it seems to me that around Chicago and other places there's just a lot of basic blocking and tackling that's not getting the attention that it needs compared to the question of how we would ration care in the extreme situation you know just uh so i'll wait i'll wait and ronjon pick up but i thought just the basic vanilla ice cream questions about how to how to expand the proficiency of icu's needs a lot more attention than before the rationing question so i'm going to pick up there i don't disagree with harriller valery i just want to say i think that there is a plan even in the states that do not have a plan explicitly there is an implicit plan there and that plan is a discriminatory plan that you know basically says that the that the bodies of black and brown people are worthless and and and that has been a long-standing plan you know of you know of our policy decisions in this country and what we're seeing are the logical implications of that invisible plan if you will right no one explicitly wrote that plan down it is to me amazing that the president of the united states now can actually say that right in some sense he says you know basically that he is going to deny blue states you know resources right and it is the articulation of that plan so i think you know i i think we need to just be clear that that is an explicit plan that is out there even though nobody wrote it and it is it is functional it has been operating for a long time and covet 19 has seen that deployment of that plan in a very coordinated way and there are people in this country who want that plan to continue right and and and so it is not a randomly distributed event of covet right now right it is not just happening in any way and i know both valery and harriller are well aware of that but i just feel like we need to say that clearly at this point you know we we shouldn't dance around that that fact and all the data points in that direction and i may reply to that um and you're absolutely right it's the implicit plan is absolutely there as well have been um also accused rightly so in many circumstances of having enormous discriminatory effects um if actually implemented the way that they are that they're written and there have been a number of complaints um to the office of civil rights within hhs um going through exactly the implications that these plans would have on exacerbating health disparities and um and and the explicit discriminatory effects that implementing these plans would have and some of these plans have been adjusted and changed and in response to um that i guess feedback um but again um it's not enough okay next question yes okay it's fine go ahead okay so i think the next question is best for uh dan brudney and lin jansen although uh ronjana you may have an answer to this too can you really exclude values from capacity determinations and doing so aren't you really just substituting your values for those of the patient um so i guess what i'm after is for there to be an acknowledgement of the role that values do but usually in a concealed fashion um but should and in a more clear and out um um um straightforward fashion play in capacity determinations and so there's one question about whether the patient's values should play a role and this is where a certain philosophical view which is just sort of taken for granted without argument but which among philosophers is disputed um sometimes at least officially um comes into play even though in my experience in watching clinicians make decisions um they don't quite believe it in practice all the time um then there's a separate question as to whether the clinicians values come into play either way um it seems to me the best thing to do is to acknowledge that values are likely to be at stake um and to think about how to make sure they don't play a pernicious role um thai and hagan and oshe have talked about the need for um values to be contestable and transparent they talking ways about the need to avoid value parochialism all of which sounds right more broadly i think that um in a liberal society we generally think that there's a range of beliefs that people can have that are compatible with thinking that they meet the threshold level of rationality um to have decisional capacity but it doesn't follow that that means that literally every such belief in value doesn't betray some form of a worry about whether something's amiss here um the cases they're made i don't know how many cases there are going to be of this form um the case of anorexia nervosa is sort of the good case for the point because what one sees is clinicians um desperately trying to find that the patient doesn't have decisional capacity and being unwilling to say because they're in the grip of a certain philosophical view that the reason the patient doesn't have decisional capacity is because she values being thin over continued life and they're they find themselves unwilling to say that's just irrational now this is a case where i think one ought to be willing to say what you believe and what frankly the clinician is really acting upon and be willing to defend the view that that is an irrational belief obviously if you then open that door you're going to need to have safeguards so that you don't have clinicians just constantly talking you know sort of rough writing roughshod over patient decisions on the grounds that some value is irrational so this is why i was met mentioning various kinds of um what i call strategies of avoidance the one i'm in favor of is to say that um if you're going to do that you're going to have to as the clinician really make the case and making the case uh i you know i brought an illegal analogy making the case means more than just saying here's what i believe it means saying whether it's in the context of an ethics committee or something making a case that what you believe seems so compelling that it passes a very serious standard before you then could say that it's the patient doesn't have capacity so i'm i'm i'm i'm worried that decisions are being made um and cover um sort of um uh without people being aware that what they're really doing is making an assessment the rationality of a value and that um and that's because they're in the grip of a bad fullest or at least i think a bad philosophical picture um and that'll be better to just bring it all out and make make sure that we clarify this explicitly and thus make sure the safeguards are put in explicitly okay um okay um i'm trying to make sure you all get your question when um lanie ross sort of has a comment and a question so she says the original original idea for respect for persons um and not respect for autonomy um that respect for persons can be understood to include the notion of relational autonomy which would give autonomy a positive and negative conception um and respect for person is a single principle that can be explained informed consent and informed refusal um actually can you just respond or have any comments about that well um yeah so this this idea of respect for persons um you know it could i mean if it involves the the the idea of autonomy uh then it runs into the same kinds of problems that um i'm trying to avoid with this with this view that i advanced today but it doesn't have to have to lie completely and uh or at all in this notion of um autonomy we can we can maybe ground it in in a in a beneficence principle and and avoid the and avoid the problem so i i um i think part of one of the things that uh lanie was saying i i did get a chance to look at some of those comments myself um that that that the respect for persons can can can be an explanation for the right of but you know the bodily integrity claim that i'm that i'm making um and and i guess that's that is true um you know i like the more clean um appeal to just bodily integrity because it just focusing on that avoids all the problems that one gets by bringing in the autonomy element so um i'm not sure if i'm really responding to lanie's to lanie's um concern or question or point but those are my thoughts okay um for mary bowman to herald how do you see the role of bioethicists in fighting for or demanding the types of social insurance you described well that's a great question and and and i think you know i was thinking um um there's this great quote from warren buffett where he says when the tide goes out you can tell who's wearing a swimsuit in covid-19 has sort of really exposed some very general issues with our social insurance structures that bioethicists need to pay more attention to one thing is people actually need to learn about the mechanics of the way social programs work and how does medicaid work in a way that that creates barriers for people to get the care that they need and what would you know if we if we offer expensive medicaid coverage at low reimbursement rates uh you know what are the real you know we're not actually providing the the equal access to proficient care that that we might think that we are and i think i think bioethicists need to actually learn uh learn the granular realities of health policy in in a deeper way uh and i think that's in the same way that people need to understand the granular realities of clinical care to give uh properly reflective ethical guidance that'd be one thing i i also think that we need to think about disaster preparedness as a requirement of social justice and give that the same attention that we give to the clinic to clinical ethics and and the and expertise around clinical care dilemmas that uh you know this stuff's going to be boring until it isn't and bioethicists need to really be be more on the public health uh be more expert on public health challenges of you know before they before they hit the news because i i do think that there's a focus on uh on acute medical care in the bioethics discourse that sometimes neglects these issues okay naranjan this technology in health care for example telehealth changed the ethical landscape in providing protections for both patients and providers during a pandemic i don't know that it's changed the ethical landscape i think it's changed the treatment landscape um i think the ethical questions are probably largely still the same and and i think that um you know much of this you know has been good and needed expansion of access um you know using these modalities um and i think to to to piggyback on what what harrell was just talking about i think you know ethicists have a really important role to play in terms of helping to push the envelope on on these different areas right on policy on insurance on technology and and i think it it probably comes out of you know what mark was discussing earlier you know that that that kind of experience of of of living with and working through ethical cases and and thinking through these issues in a profound way you know through the case consultation these these limitations of our system so lack of access to care you know come up routinely right i think it is incumbent on on ethicists to not simply accept the world as it is right to accept our structures as they are as as harrell points to i think we can learn about you know better formulations better possibilities and then advocate for those push for those it may not help the patient in that consultation moment you know in the short term but you know advocating with your hospital advocating with your state advocating at the federal level can really then um speak to that and the ethicists actually have the case material you know believe it or not i when you go i think you do and and folks here i mean i i have never testified in front of congress but i have seen people who do and i've watched some of their testimony from experts the data actually isn't as nearly as persuasive as when they present somebody's compelling story right and the ethicists have these stories right to tell about people's lives and their lived experience so i think i think that that speaks a lot and i think that's a motivator when i work with people in the technology space all right and then ron jenna you think not being an academic in a traditional sense has enabled you to speak up and take opinions on topics such as racism and medicine thank you tracy well i hope that even if i had become an academic i would have been able to take this important stance but i i certainly feel that what the guardian has accorded me most of all is a global platform and sometimes i get very tired of trying to preach the converted in my hospital or trying to change systems in a hospital and so for me that the best part about being a columnist is i can kind of go around these people and talk directly to the patients and the people who are impacted by policy or changes and then funnily enough that pressure comes back on the system and slowly system change happens so i kind of feel like that's a sweet spot for me and and as i reflect on potentially entering a career in politics or policy one of the things that sets me back is then you are constrained by a party of view um and and and i and i wonder how that would look like because right now i really have the freedom to express the view that i want to express fascinating mark had a question wait a minute um the mark's question and i am guessing that this is for lin as well is is tonam is autonomy a valid issue in the model of shared decision-making um that yeah so i'll i'll um respond to that i guess if it was for me i'd actually think um the um i didn't mention this in the talk but it beach has a view of um well-being um that's not just uh limited to uh strict medical well-being um you know what we call medical best interest but but um larger view of well-being that includes this this idea of well-being overall for the patient and in that when one understands that particular view of well-being which i find quite uh quite compelling um that kind of makes um shared decision-making uh really when you when you look at it from that perspective of well-being shared decision makes sense as trying to get at um this fuller notion of well-being so when when a clinician engages with um their patient uh they're they're not necessarily trying to get the autonomy interests i suppose but more what are the well-being what's the larger picture of well-being so that i can move forward and help advance um that oh we can move forward together and advance that larger picture um not just being focused on the narrow medical well-being so i i think that that view of well-being uh is more attractive uh defense of shared decision-making than autonomy um and then ask a little follow-up on that yeah you can have a follow-up on that and then i have another question he asked you if netlin because um part of well-being is um to be not merely consulted but to in effect control the decision-making that has to do with your health and what happens to your body that that's quite important not that this isn't to be understood in terms of some independent content style right but rather in terms of some vision of what a good life is that it is in some sense of self-directed life well yeah for sure and that that is part of that is part of well-being but we but having the we won't ever get to the patient won't ever get to the point of of even that unless consulted and unless this process of shared decision-making goes on because that's it won't be revealed if we just focus strictly on medical well-being there's no need to okay great thank you and then dan uh another question from mark decisional capacity is based on whether values can be assessed what if the decisions made or bad decisions that don't clearly preclude value judgments so i saw that in the chat i wasn't quite sure that i understood what he was asking i think i'm going to more or less say the same thing i said before that um the what i'm trying to have clinicians avoid is um thinking about value judgments under the table rather than explicitly um it sounds like mark is happy to have them think about value judgments explicitly in this question um and then the question becomes um how do we make it the case that um the patient's choices are not simply overridden on the grounds that she doesn't have capacity when the clinician thinks that a set of value judgments are irrational and there um once again my thought is that uh and and you know this is something that i think in other areas of medical decision-making um can be learned from the way the law has done things that um it's a useful move in the law it's not a it's not it's not mechanical determining what the difference between preponderance of evidence um clear and compelling and beyond reasonable that is there's a lot of gray in that but it gives you some sense of where an argumentative burden has to be met and that it can be a significant argumentative burden and my thought is that anytime you want to um do not capacity to a patient on the grounds that her values show that she is irrational you you need to meet a significant argumentative burden that's not in in certain cases that burden can be met um and and so uh but you need to make sure that you meet it you need to make sure that um you're not engaging in various kinds of discriminatory activity that you're not um you know uh uh failing to understand what a what a what a view is because you fail to understand the cultural background the whole range of things that are obviously needed to make sure that um medicine is not discriminatory but at the same time um i think there may be at the margin certainly um roomed to worry that in virtue of her values um a patient is flagging a rational a problem with her rationale so i just want that out on the table and explicit and then for there to be mechanisms to make sure that it's a plot problem can i can i cut in uh uh yeah just i want to link the two parts of this conversation that we've been having with one being about about disparities and social justice the other being decisional capacities of patients so as we write this my brother-in-law who's intellectually disabled happens to be in the hospital right now and one of the safety net providers in the southland that was just the closest hospital to his group home when an ambulance was called and and he has a number of issues in his care that that the hospital lacks the institutional capacity to really engage his decisional capacity well and a lot of the issues that that we're discussing right now in order to really treat patients with with the dignity that they deserve and to give patients the opportunity to exercise their autonomy but also to make good decisions that requires that clinicians are properly trained and that there's enough capacity in the hospital to really spend time with the patient in conversation what's happening now in his care is they're completely overwhelmed with covid and he is and they are not trained to to be culturally competent with people who have intellectual disabilities so they're asking him things like on a scale of one to ten what you know what do you think about this and he doesn't know what a ten is uh and so i think that we have to think about how do we build the capacity of organizations to engage in reflective conversations with patients with whatever their decisional capacity or issues are and think about this in an organizational way not just in uh in sort of a normative way to how to link you know how are the clinicians prepared to guide patients to make these dilemmas less pressing that sounded way more brilliant before i said it than after i said it but i think it's really important to link the organizational capacity of the caregiving setting with these conversations that all right i was just going to say we actually had an intellectual disabilities discussion and case conference on wednesday and what you said is one of the issues that even the university of chicago had at least with one patient at one point in time so yes i agree that there's lots of education that could be done at all levels but there are definitely different levels of care at different institutions and that we do need to try to equalize that all right well i think this has been a great group with a lot of very interesting talks and i'm glad that the i don't i have no idea how big the community is that's been watching but thank you all very much as well mark congratulations and i think this has been a great conference hi can you all hear me i hope you can um i just want to offer my deepest thanks to our brilliant speakers and moderators this year this year's conference strikes me as one of the best conferences of the past 32 years this 32nd annual mclean conference is of course a new model for us first of all it is as you know our first virtual conference and and i have the deepest hopes that by next year we get back together as colleagues in real life second i love the use of panels this year panel discussions after each of the panel presentations and i hope that we'll continue that going forward it's an honor for me to have worked with mclean fellows and faculty over many decades three and a half decades i'm so proud of each of your individual achievements and i'm deeply grateful for the privilege of knowing and working with each of you although officially i'm being replaced as the director of the mclean center um that hasn't quite happened yet and therefore i mentioned to you not to be too surprised if in the next month or two you hear from me again to invite you to speak at next year's conference which will take place let me tell you uh you're the first to hear this on november 12 and 13 of 2021 there's no need under the current circumstances to wish you safe travels but i hope you all stay healthy and safe and continue to realize your career dreams and goals i'm deeply moved by working with you over the past two days uh thank you so much and ann and i send our love to all of you bye bye bye