 It's a pleasure to welcome you to the sixth panel of this year's annual McLean Center Conference. This panel is entitled, The Field of Clinical Medical Ethics, and it is my special honor to introduce this panel's moderator, Dr. Alexia Torqui. Dr. Torqui is a professor of medicine and the associate division chief of general internal medicine and geriatrics at the Indiana University School of Medicine. Dr. Torqui is director of the Evans Center for Religious and Spiritual Values in Health Care and a research scientist with the Indiana University Center for Aging Research at the Regent Strife Institute. Dr. Torqui received her undergraduate degree from Colton College and her MD from Indiana University. She completed residency in primary care internal medicine at Emory University in Atlanta, Georgia and fellowship training at the University of Chicago from 2005 to 2007 in primary care health services research and ethics. This was funded by the Health Resources and Services Administration. Dr. Torqui's research has focused on spiritual, religious, ethical and communication aspects of medical decision making for older adults. Her current research focuses on surrogate decision making for older adults with dementia and other forms of cognitive impairment, including randomized trials of spiritual care in the ICU setting and advanced care planning for older adults in their communities. Dr. Torqui has received funding from the NIH, from the Greenwall Foundation and other foundation sources. She practices outpatient palliative care at Indiana University's Health Methodist Hospital. It's a pleasure to introduce you to the moderator of panel six, Dr. Alexia Torqui. Hello and welcome to this panel. As I begin, I'm going to give a couple of brief schedule changes. Dr. Peter Singer and I will be switching places, so he will be our first speaker and then we may not hear from Dr. Jason Carlawish, who's unavailable today. So now let me introduce Dr. Peter Singer. He is special advisor to the general director, Dr. Tadros, of the World Health Organization. He supports the director general to transform the WHO into an organization sharply focused on impact at the country level. Dr. Singer co-chaired the transition team, was the architect of WHO's strategy and its triple billion target and supports strategy implementation of the WHO's program. During the pandemic, he has been a passionate advocate for vaccine justice. Before joining WHO, Dr. Singer co-founded two initiatives, results-driven social impact organizations. He's also adjunct professor of medicine at the University of Toronto. He's a fellow of the Royal Society of Canada, the Canadian Academy of Health Sciences, US National Academy of Medicine, and the Academy of Sciences for the Developing World. As a researcher, Dr. Singer has published over 300 articles, received over $50 million in research grants and mentored hundreds of students. He studied internal medicine at the University of Toronto, medical ethics at the University of Chicago, and public health at Yale University, and management at the Harvard Business School. It is my pleasure to introduce Dr. Peter Singer, who will speak on global vaccine equity. Well, thank you so much, Alex, and greetings to everybody from Geneva to old friends and new. These brief remarks are going to follow very, very well from what my friend Bernie Lowe was just talking about, which I had the pleasure and privilege of hearing. And it'll follow in two ways. Firstly, I want to really echo what Bernie said, paying tribute to Mark and paying tribute to the McLean Center. I like very much what Bernie said about Mark's vision. He really is a towering giant in the field, and it's wonderful, Mark, to be here with you and with all our friends and colleagues in the McLean Center. You and the McLean Center really have accomplished so much for clinical medical ethics. Thank you, and congratulations, and bravo. Secondly, this talk follows perfectly from what Bernie was saying, because he started with clinical ethics, went through some policy issues, and then went to public health ethics. He talked about SARS. He talked about 2009 influenza, and then he talked about COVID, and he actually mentioned the distribution of COVID vaccines. And that's where I'm going to zero in in a second. But just to take a step back, we're in the midst, unfortunately, of the worst global catastrophe, certainly in public health, probably at all in 75 to 100 years. There have been, we've just passed the 5 million reported deaths mark, and the tree number of deaths related to COVID is probably two to three-fold higher. Every week around the world, about 50,000 people are dying, and many of those people don't have to die. Presumably, many or most of them are unvaccinated. Now, COVID, this catastrophe, has really offered us three key lessons, equity, equity, and equity. And it's in that spirit that I want to zero in on one particular application, if you will, one particular case, if you will, of equity related to COVID-19, which is global vaccine inequity, or I would say global vaccine injustice, because what's at stake here is not just the surface numbers that I'll talk about in a moment, but the structural issues, the underlying structural causes of the vaccine inequity are what really make it quite unjust. So moving on to that topic of global vaccine equity, what I'd first like to say is to put it a little bit into context. WHO's position is that, essentially, vaccines plus. Vaccines alone are extraordinarily important, but alone, of course, they won't end the pandemic. They need to go hand in hand with the public health and social measures, including staying at home when you're sick, the importance of ventilation, being outside when you can, opening the windows and doors, physical distancing, and other public health and social measures. But vaccine equity is a very, very fundamental issue related to ending the pandemic. You know, about 7 billion, more than 7 billion doses now of COVID vaccine have been distributed. And just to capture the inequity, the rates of vaccination in many, let's say, G7 countries, high income countries are 60, 70, even 80 plus percent, depending on what denominator you use. Across sub-Saharan Africa, less than 10% of people in most countries across sub-Saharan Africa are fully vaccinated. So let's say 70% versus less than 10%. That situation is highly inequitable. Now, why is that bad? It's bad for at least a few reasons. Firstly, it's bad because it's incredibly self-defeating. You know, we have a fire raging, as I mentioned, in many parts of the world with COVID raging, with the transmission roaring. And what that does is it really sets up the opportunity for the creation of variants. Most people are familiar with the Delta variant. Well, there's a lot of letters left, unfortunately, in the Greek alphabet for other variants. And this hasn't happened yet. But in the future, those variants could evade the vaccine. And so all of us right around the world could be set back. And so what you might have in your mind is a fire raging around the world. And of course, you can't put out half a fire. So this approach to global vaccination is incredibly self-defeating. It's not in the self-interest of anyone. And COVID is not over in any country, including the United States, until it's over in every country in the world. It's also very, very poor for the global economy. You know, literally the economic damage from COVID is in the tens of trillions of dollars, $22 trillion, by one estimate. And the only way to solve the economic problem is to solve the public health problem. And that, of course, has vaccination, as we've talked about. It is a very, very important component. But I don't want to so much talk about the epidemiological issues of variant creation or the economic issues of global trade and the impact on the global economy. What I want to zero in is a third reason why this global vaccine inequity is bad. And that's because it is unethical, immoral. If indeed every human life is of equal value, then why is it that some lives actually seem to be treating some lives as of less value than others? This inequity has very, very serious consequences for lives and livelihoods. And what is very unfortunate about this moral catastrophe that we're facing is, and this is now moving towards the types of things. Bernie was talking about the types of things at the McLean Center. There is a disconnect between the empirical reality of that 70% versus less than 10% inequity and the theory of justice, the theory of equity that would require actually allocation of vaccines and where, for example, they can make the most difference. And so that gap between theory and practice is, I think, extremely telling. Now, when I look back at some of the work that had been done earlier, I noticed that Sally Benatar, Abdullah Dar and I had written an article in international affairs in 2003. And it was reproduced in Plus Medicine in 2005 in a shorter version, where essentially we talked about global health ethics as the rationale for mutual caring. And we argued that any theory of equity had to be built on a sense of solidarity, which had to be built on a sense of empathy. And that ethical chain, if you will, it seems to be broken in COVID, as it was, for example, in HIV anti-retrovirus. You really have to wonder, based on those observed inequities in the world, to use a religious version of this same argument, whether we truly are our neighbor's keeper. Do we truly love our neighbor? Do we really want to take care of our brother or our neighbor like we take care of ourselves? These precepts seem fine in theory, but we don't seem to be practicing them in practice, at least if you think about neighbors right around the world or brothers and sisters right around the world. So I'll come back to that distraction in a moment, because I think it's very fertile ground for scholars and practitioners at the McLean Center for Clinical Ethics to really dive into, to understand and to find ways to regress. But I'll come back to that in my closing comments. I do, though, before leaving the topic of vaccine equity, want to talk about the proposed solutions. And there's really two. One is the equitable distribution of vaccines. So WHO has set, and this was also in the recent G20 communique, targets of every country vaccinating 40% of their population by the end of 2021 and 70% by mid-2022. Now it goes without saying that the United States or Canada or the UK or Germany, their citizens, would not be happy waiting for another year, midpoint of 2022, for 70% of the population to be vaccinated. So even those targets are already constrained by the reality of vaccine supply. But we're also not on track to meeting those targets. About 100 countries so far have not vaccinated out of about 200 countries in the world, 194 member states of WHO. About 100 countries have not vaccinated 40% of their population. And it's projected that around 80 countries won't meet the 40% by the end of the year target. To meet that target would require 550 million vaccine doses, which is just about a third of the 1.4, 1.5 billion or so vaccine doses that have been pledged by G7 countries alone. So what would need to happen is a reallocation or redistribution of those doses in the face of constrained supply. And that can be done by countries with stockpiles. And many countries do have stockpiles sharing those stockpiles now with a channel called COVAX, which is WHO, GAVI, and other partners, UNICEF and other partners, or with the African Vaccine Access Acquisition Team, because that's a channel for equitable distribution, or swapping borders between now and the end of the year with COVAX or AVAT. And the manufacturers obviously have a role to play in this. So the first solution is redistribution, equitable reallocation, practical ways to do that are set up. The ethical motivation is the piece that I highlighted earlier that could use a little bit of reinforcement. The second solution, of course, is the sustainable solution, which is distributed vaccine manufacturing around the world. And the reason for this is that underlying the shortage of vaccines is a shortage of trust. It's likely, for example, that no country in regions of the world that did not have vaccine manufacturing going through this crisis will ever fully trust global supply chains in the case of future variants or future pandemics that inevitably will arise. So WHO have set up a number of mechanisms, for example, the mRNA Technology Transfer Hub with the government of South Africa that make this possible. They're based on successful technology transfer of influenza vaccines in the period of 2006-2016. Unfortunately, the mRNA vaccine manufacturers have not joined this technology transfer hub, so therefore it will take 36 months or more to do the technology transfer to the African region and beyond, even though if they had participated, if they were participating, it would take 18 months. But that is the sustainable solution because that's good, not just for this variant of COVID-19, but potential future variants and potential future epidemics or even pandemics. So I want to wrap up those comments on vaccine equity and just put them a little bit into context. There are other hurdles beyond vaccine equity. There's future pandemic preparedness, extremely important, which includes a number of features, including inclusive governance, and that's why at the end of this month, the WHO is holding a special session of the World Health Assembly, all the governments of the world, probably the second time in its history with only one agenda item to negotiate an international instrument around pandemic preparedness. And the core value there, of course, is solidarity. That's what an international instrument is for. It's to help the countries of the world work even more closely together in the spirit of multilateralism. The second bit of context is SDG recovery. The world is way off track for the sustainable development goals. It was off track before COVID to take one example. The WHO estimated that a billion more people would need to have universal health coverage between 2018 and 2023 to stay on track for the sustainable development goal of everyone having universal health coverage by 2030. But out of that billion, the shortfall, the shortfall, not the attainment, before COVID was about 700 million people and after COVID, it's in the 800 to 840 million range. So we're way off track. We need to double down on primary health care. We need to invest in national health systems. And of course, WHO has a central role in pandemic preparedness and helping countries to catch up. So in the last few minutes, I want to turn back, having contextualized the vaccine issue as vaccine plus at the front end and contextualized it alongside pandemic preparedness and SDG recovery. At the back end, I want to turn back to the issue of global vaccine inequity. And maybe the first thing to say is that the ultimate issue here is leadership at the level of heads of government, international organizations. And I feel very proud of the voice of moral clarity that Dr. Tedros has been throughout the pandemic, my friend and colleague, the director general. And of course, also community leaders. So leadership in a sense is the ultimate vaccine against the pandemic and the multiple global challenges that we face in climate, in racism, in economic inequality. But there is things also that you can do as leaders. And this is where I would call upon colleagues at the McLean Center and in the bioethics community really to treat this as an unsolved ethical challenge, the disconnect between what we say and our ethical precepts and what we do as represented by the vaccine inequity that the world faces. And to identify and work on practical ways to close that. And I'm especially here talking to young people to think about ways of cultivating that sense of empathy that will cultivate that sense of solidarity that will then make equity real and not imagined. And that is the challenge that I would like to lay down for colleagues and friends at the McLean Center. Now, that might seem like a tall order, but to quote the great statesman Nelson Mandela, it always seems impossible until it's done. And if anyone can solve the ethical conundrum between the theory and practice at the heart of this most significant challenge of our time, which is global vaccine inequity, global vaccine injustice, it is colleagues like you. And I call upon you and actually colleagues around the world in bioethics in low and middle income countries especially to work on and solve this ethical challenge that is at the heart of the public health challenge. And with that, I just want to again pay tribute to Mark, to the McLean Center for the wonderful work that you're doing for the important work that you are all doing. It's really a privilege to count myself as one of your number. And I thank you very, very much for your attention and wish you a very successful conference. Thank you very much. And it's great to be with you. Greetings from Geneva. Thank you so much, Dr. Singer. A couple of updates, please do continue to put your questions in the chat and then others can upvote them. However, Dr. Singer will not be able to join us for the question and answer session today. And so I did post this question so that you can all take a look at them but he will not be available to answer those. So I will be speaking next and I want to echo Dr. Singer's endorsement of how wonderful it is to be here with all of you even if it is virtually. And I've learned so much in the last day and a half and I'm sure that will continue through the rest of the day today. So today I'll be talking about the Chaplain Family Project, a randomized controlled trial of spiritual care for ICU family members. I will say that we finished this trial one week ago and it was kind of a scramble to get these results together. But I'm very excited to be able to share them with you. I'd like to introduce my team. This was an interdisciplinary collaboration among chaplains, clinicians, research staff and also between our health system and university and all the members of the team who participate in the project are listed here. I'm pressing next, but I'm not advancing successfully. And I skipped past funding, which is fine. I'm funded by the NIH and this particular study was funded by the Evan Center of IU Health and by Indiana University. So beginning with surrogate and family psychological distress. In the past 20 years, there's been a growing body of research on family psychological distress in the ICU. This has been, this is severe enough that it's now gotten its own name post ICU syndrome family. This distress includes anxiety, depression, post traumatic stress and complicated grief. Research has found that this occurs in about a third of ICU family members but is closer to 50% if the surrogate faces major decisions regarding life sustaining treatment or the patient dies. Well, why is this important? It's important because over five million adults are admitted to the ICU each year that was before COVID, I'm sure it's even higher and the tremendous psychological burdens that families face are a serious public health issue. Our research has found in observational study that the level of distress after hospitalization is associated with the surrogate's ratings of communication quality. Specifically emotional support is associated with lower anxiety, depression, post traumatic stress and decisional conflict. Strangely, we found that information was associated with worst post traumatic stress symptoms when controlling for emotional support which was a curious finding. Our research has been guided by this conceptual model which proposes that communication, both it's informational and emotional support components both contribute to decision making and directly affect the surrogate's wellbeing, surrogate outcomes such as the surrogate's wellbeing and patient outcomes such as the care that the patient receives. So in response to all of this distress, a number of communication interventions have been developed. A recent meta analysis of 13 studies provides a good summary. They found that overall ICU interventions have been able to reduce aggressive life sustaining treatments at the end of life as shown here for example with ICU, length of stay among the patients who died. But overall, the studies have not been successful in improving psychological wellbeing. Here's a summary of the effects on post traumatic stress. One of the first studies you can see there by LaTrette did show an impact on post traumatic stress but later studies did not. In fact, the Carson study done in 2016 showed an increase in post traumatic stress symptoms which is somewhat similar to our finding. In reviewing the protocols from that study they were very focused on information on the cognitive aspects of decision making and maybe this type of information without emotional support actually increases stress. So based on our observational findings in these intervention studies it may be that the effects of emotional support and information are quite different with emotion affecting the surrogates wellbeing and information affecting decision making and medical care for the patient. Now moving on to religion and spirituality. In general, we know even less. The literature does show that religion and spirituality are important in the ICU in three ways. Decision making especially regarding life and death decisions, the crisis of illness as a spiritual crisis and also most importantly coping. Studies of ethics consultations show three similar themes in which religion was present in three ways in end of life decisions. Coping, chaplaincy visits in central to end of life conflict. I think it's important that actually coping is really one of the most important and I think religion gets a bad rap in the ICU as being primarily a barrier to good decision making but in fact, coping and chaplaincy visits are also essential. Qualitative research in the ICU has characterized spiritual distress and has talked about some of its components. Regarding religious and spiritual support, there is evidence from a variety of different illnesses. For example, spiritual support in cancer finds that a vast majority of patients think it's important and yet many do not feel that they're spiritually supported by their medical team. There is data about the effect of spiritual support on decision making and finally Karen Steinhauser had a study and hang on just a second because I can't see my slides very well. So I'll start in the middle. Terminally ill patients who are well supported by religious communities access hospice less an aggressive medical treatment more which I think is really interesting and spiritual and end of life discussions by the medical team reduce aggressive treatment. A very interesting study of spiritual support in the ICU used audio recorded conversations and found that religion or spirituality was raised in about 40 of the conversations and the clinicians most common response was to ignore it. Clinicians explored the beliefs further in only eight of 40 cases and it's probably worth noting that chaplains were rarely present for these discussions. Chaplain intervention research is still in its infancy. I'll talk about a few brief trials that are really the extent of the entire field. One study of the effects of chaplain visits since hospitalized patients with COPD found that there was lower anxiety and had a higher satisfaction with care. A study that was done in Methodist Hospital here in Indianapolis found that the structured interventional protocol improved religious coping and reduced negative religious coping. And finally, a study by Karen Steinhauser for caregivers of patients with advanced cancer in ALS found that there were improvements in certain aspects at end of life readiness such as preparation but not an anxiety, depression or post-traumatic stress. So now on to our project. The objective of the chaplain family project was to determine if chaplain delivered spiritual care could improve psychological wellbeing, spiritual wellbeing and medical treatments for the surrogates of ICU patients. And we were particularly interested in improving psychological and spiritual wellbeing given the failure of prior studies to move these outcomes. Before I go on to the study, I want to affirm that chaplain is the spiritual care experts. There are over 10,000 healthcare chaplains in the US who provide millions of hours of care each year. It's worth noting that chaplain staffing in hospitals varies widely from volunteer from a few community clergy to a highly trained staff of chaplains who are trained to comprehensively assess spiritual and religious needs of patients, families and the staff and address those needs. Here are some of the chaplain competencies from the Association of Professional Chaplains. And you can see that they include established deepen and end pastoral relationships with sensitivity, openness and respect, triage and manage crises, utilize spiritual assessments, provide religious and spiritual resources and facilitate theological reflection. As you can see from the description of these competencies, chaplains really address religion, spirituality and the psychology of the patients and families. I believe that all of these things are crucial to the chaplaincy practice. Sometimes people do question whether psychological support is a part of chaplaincy, but as some of my chaplain colleagues have reminded me before the development of the field of psychology, clergy were really the people we went to. So it's really completely within their scope of practice to think about psychological wellbeing. How did we develop this intervention? An interdisciplinary team, including chaplains, healthcare leaders, a physician, myself and research staff met regularly over several months. We developed and reviewed the intervention, pilot tested it with 25 participants and then refined it with feedback from other practicing chaplains. So to show you a little bit about our intervention, the Sky Intervention, spiritual care assessment and intervention involved proactive contact, semi-structured assessment and spiritual strengths and distress, spiritual care interventions and then documentation in the electronic medical record. The semi-structured assessment required a balance of structure and openness, specifically structure because this is a randomized controlled trial and we want to show fidelity to our protocol and reproducibility, but openness because chaplains practice is inherently open to the particular needs of that patient at that time. So therefore we use a semi-structured approach. We identified dimensions of the spiritual experience and we divided them into four, meaning and purpose, relationships, transcendence and peace and self-worth and identity and developed questions for each dimension. At the initial interview, the chaplain was asked to use one question from each dimension verbatim and the follow-up asked one question from any dimension. So here is our framework with our questions. So for example, for meaning and purpose the chaplain might ask what helps you understand what is going on now. And again, the question would be asked verbatim, but then in follow-up, the chaplain could follow the conversation wherever it went. The chaplain would then offer interventions which as you can see, include explicitly religious interventions such as prayer, reading the Bible or sacred texts or things that are more psychologically supportive such as active listening and emotional support. And our feasibility, we were able to demonstrate with 25 legally authorized surrogates that 24 out of 25 had the initial in-depth visits and there were 45 visits for follow-up of the patients who died. We made 11 bereavement calls. So this basically demonstrated our feasibility. And then for acceptability, as you can see, there were high ratings for the various aspects of the intervention. We then went on to refine the Sky Framework by having 14 chaplains trained in the intervention using the framework with three of their own patients and then participating in semi-structured audio recording interventions. So for example, as this chaplain said, what I liked about it was that the questions were very rich. I'm looking at the question, what happens when you feel helpless? It's a very pointed, directed question. So now onto our randomized controlled trial. We conducted this in four intensive care units at IU Health with 192 patient surrogate dyads. This guy intervention was conducted by five diverse board certified or eligible chaplains. They included Jewish and Christian chaplains, white and black chaplains, men and women. Again, assessing the four dimensions of spiritual care at the first visit and then follow-up visits at least one additional dimension. We provided weekly follow-up until discharge and attempted bereavement call. And our control group got usual care which included spiritual care by the unit chaplain. Our outcomes included the patient reported outcomes six to eight weeks after admission and our primary outcome for psychological well-being was anxiety. We also looked at measures of spiritual well-being and finally medical care during the hospitalization. And I'm afraid to say that's pending. We haven't completed all our chart reviews. So as you can see here, we randomized 192 patients. We did have a rather high rate of refusal primarily because people felt too busy or too stressed out. And we had analysis of about two thirds of our participants. So as you can see here, our surrogates were majority female. They were about 20% African-American. They tended to be Protestant Catholic or have no religion and were more likely to be the spouse or long-term partner of the patient. We were able to achieve a 93% of first visits. And then as you can see, the follow-up visits kind of counted down from there. So about 53% of surrogates received the two follow-up visits that we had hoped for. Among 23 patients who died, 78% received a bereavement visit. We started this intervention allowing visits in person or by phone, but then the pandemic hit. And so by the end of the study, 71% of the visits were delivered by phone. Our assessment, we did assess all four of the dimensions and most initial visits. And then the follow-up visits, obviously there was more variation. The bereavement visits tended to be pretty brief and were more just expressing condolences. And then our interventions. I have shown the interventions in white texts that were more psychological and in black texts that were tended to be overtly spiritual and religious. And you can see that on the whole, the most common interventions were these psychological interventions. So what did we find? The intervention group, this is at six to eight weeks after the hospital discharge, you can see that the median score on the intervention group for the GAD7 was one and the control group was four and higher values indicate worsening anxiety. And this difference was highly significant. You see similar results for depression on the PHQ-9 and post-traumatic stress on the impact of events scale. So we did show a substantial improvement in the psychological wellbeing of surrogates in the intervention group. As you can see for spiritual wellbeing and positive religious coping, we did not reach the signal significance, although the trends are in the right direction. And I think this points to larger studies that we need to do next. Satisfaction with care was highly significant and decisional conflict was not. So in summary, spiritual care can improve the psychological wellbeing of ICU surrogates, but we did not demonstrate significant changes in spiritual wellbeing. Intervention surrogates had higher satisfaction with their spiritual care. These results can inform hospitals about the value of spiritual care for ICU families and serve as evidence for greater inclusion of chaplains and palliative and intensive care teams. So looking at our model, I think that prior research, particularly the previous intervention studies did show, sorry, I'll back up, did show pretty strong evidence for information improving high quality medical decisions and patients outcomes. Our study of emotional and spiritual support does show evidence of improving the psychological wellbeing of the surrogates. And it's shown in light blue have not really proven that we can improve spiritual wellbeing. There's also some work to be done in terms of demonstrating that emotional and spiritual support might impact high quality medical decisions. So our model's coming together. One very peculiar finding that I've mentioned in the past is this concern that information when provided without emotional support might in fact impair the wellbeing of the surrogate decision maker and that needs future research. So what's next? We're in the process of our chart reviews to evaluate the effects of the spiritual care intervention on medical treatments. We hope to conduct a national multi-center study to increase religious and geographical diversity of the surrogates and to increase power for the religious and spiritual outcomes. Finally, I think even with this data, we can advocate for increased chaplain staffing in the ICUs that includes proactive contact and evidence-based intervention approaches in order to fully support surrogate decision makers in the ICU. Thank you very much. I am now very happy to introduce my colleague from Indiana University, Dr. Richard Gunderman. He is chancellor's profession of radiology, pediatrics, medical education, philosophy, liberal arts, philanthropy, and medical humanities and health studies at Indiana University. He's also John A. Campbell Professor of Radiology and in 2019 through 21 served as bicentennial professor. In addition to receiving dozens of awards for his outstanding work in medicine, he has received honorary doctorates from Garrett Theological Seminary and Wabash College. He's the author of more than... It says 850, is that true? Oh my gosh. And 15 books, including We Make a Life by What We Give. We come to life with those we serve at Contagion and Marie Curie. He currently serves as president of the medical staff of the Academic Health Center at IU Health and secretary of the faculty at the IU School of Medicine. Welcome, Dr. Gunderman. Thanks a lot, Lexie. It's really a treat to be with you today. I went to the University of Chicago because of really three faculty members. Two I won't talk about today, Stephen Toolman, historian and philosopher of science and Leon Kass, medical humanist, but also because of Jim Gustafson. I can't see my slides at the moment. Perfect. Thank you very much. Next slide. So Jim Gustafson was really the reason I ended up at Chicago and then I had the great good fortune to meet Mark and become involved with the McLean Center. But I want to remind us of Jim Gustafson because he died this year. Jim Gustafson died in January at the age of 95 in Santa Fe in New Mexico. And he might not be known to many McLean fellows, but it was actually a very important person in the early days of the center and it's important work. And Jim Gustafson published this paper in 1973, Mongolism and Parental Desires. Next slide please. And Jim had been at Yale where he trained with H. Richard Niebuhr. He was at Chicago. He was the university professor of theological ethics and in the committee on social thought. And then he went to Emory as the Henry Luce professor and later the Woodruff professor where he convened a fascinating, long running series of faculty seminars. Next slide. But it was while he was at Chicago and committee on social thought that I had the chance to meet him. And in this paper from 1973, boy, 40 years ago, he describes the birth of a premature boy with Down syndrome who has duodenal atresia. Of course, he's gonna need surgery to preserve his life. And after the physicians discussed the case with mom who's a nurse and dad who's an attorney, they elect not to undergo the surgery. Basically because they think it would be unfair to their other children to bring home a baby with Down syndrome. The baby's kept in the hospital with supportive care and eventually dies of, I guess, starvation at 11 days of age. Next slide, please. So that's kind of the family setting. Gustafson also refers to the legal setting. Nobody thought to or at least decided to pursue a court order to appoint a guardian amblytem and order the surgery. And the reason was it was thought that the baby would have a mental abnormality because of trisomy 21 and it was anticipated that the baby might present both a financial burden and an emotional burden for the family. So basically the decision was made not to order therapy partly because what would life be like for this baby if the court ordered the surgery and then the baby went home. Next slide. So the hospital setting was an interesting environment in which the case was considered. Basically nobody expected the baby's health intelligence to be normal. If the baby's health, sorry, intelligence were expected to be normal, the thought was that the surgery would have been ordered. And one nurse described caring for this child. This is one distinct feature of Jim Gustafson at this early stage in biomedical ethics in the early 1970s. He sought out the opinion of people involved in the baby's care other than just the physicians who then were seen as the decision makers. So one of the nurses said she couldn't go to bear to go into the room with that baby. It was just too much to take knowing that surgery had been declined. Another nurse said he was just such a cute baby and it was a treat to hold him and easy to love him. But I think it's very important that Jim Gustafson thought it was important to get the perspectives of the nurses involved in the baby's care. Next slide. So how was this resolved? Some of you may recognize this still from one of the greatest films ever made, Akira Kurosawa's Rashomon, a film that's partly about this theme that how we draw pictures of the situations in which we're trying to make decisions powerfully affects the decisions we come to. On the one hand, someone could have emphasized the rights of the baby, the baby's right to life. On the other hand, someone could have gone in seeking to secure the least suffering for the fewest people over the shortest period of time, in which case perhaps allowing the baby to die, so to speak, might have been the way to go. Next slide. So Jim Gustafson's mentor, and therefore in a way my intellectual, perhaps theological grandfather is H. Richard Niebuhr who said the first ethical question is never what should we do? The first ethical question is what is going on? And at least from a theological perspective, perhaps the first ethical question is what is God doing? Those of you who know, Jim Gustafson will know that his magnum opus is a theological ethics, was ethics from a theocentric perspective that very often we approach ethics from a let's say anthropocentric perspective. Gustafson argued for a theocentric perspective, he got that view, I think quite honestly, from H. Richard Niebuhr. Next slide. So if we look at it that way, there are multiple approaches to this problem. This is deceased University of Chicago economist, Gary Becker, one way to sort out a decision like this might be to figure it out, much like Professor Becker at the black board, let's let X represent the rights of the infant to life, Y represent the burden of having a mongoloid son or something like that and Z, another factor. Obviously this is not Jim Gustafson's approach, he wanted to talk with people and see the situation from the perspective of what we might call each of the stakeholders. Next slide. So Gustafson is thinking about respect for life, but not just respect for the life of the infant, but respect for the lives of each of the persons, the parents, the siblings, the physicians, the nurses, everybody involved in this case, respect for their lives as well, that we should try to view the situation from each of those, each of their perspectives have respect for their points of view, try to understand them as deeply as we can. And that was a, I think Hallmark of Jim Gustafson's perspective on ethics, respect for persons, respect for other people's point of views, a really deep sense of curiosity about trying to understand and articulate those points of view. There's a lot of groundwork to be done before we even begin to think about reaching a decision. Next slide. So again, the mother, what were her reasons? Well, she had a kind of intuition that this baby would present a big burden for a family, that it would be difficult for her to care for the child, not just to provide what we might call low level nursing or parental care, but simply to feel affection for the child. So she was very concerned about the effect of this infant on her family. It wasn't just the burden, the Trisomy 21 infant represented to her, but what it was gonna mean to the members of her family, including this baby's siblings. I'm not trying to defend mom's perspective, but I think Jim Gustafson goes out of his way to understand it as deeply as possible. Next slide. From her point of view, this infant was not gonna bring happiness into her family, mainly because of the issue of intelligence, that this baby, as he grew up, wouldn't be able to contribute much to the family and might in fact cost the family a great deal. Next slide. What about the perspective of the physicians in this case? Well, in conversation with them, they really took parental autonomy quite seriously. They made a distinction between the medical condition, Trisomy 21 with Diwadnal Atresia, and what we might call moral or ethical matters. And from their point of view, that moral decision was really up to the parents. They could provide medical advice, sort of provide the parents the opportunity to make an informed consent to whatever decision they would make, but it wasn't the business of the physicians to try to influence that decision. Next slide. So is there an outside right to life of a child born with Trisomy 21? Many of you will know, I'm actually on the Bloomington campus of Indiana University right now, the famous Baby Doe case from the early years of the Reagan administration. The early 1980s emanated from this very location. Another baby with Trisomy 21, born with an Atresia that would require surgery to preserve the baby's life. So Diwadnal Atresia is actually dealing with a problem not too much later right here in Bloomington, Indiana. Next slide. So how did the nurses see this? We've already seen their perspective to some degree, but they felt their mission was to preserve life and relieve suffering to try to care for this baby as compassionately as they could, but they didn't see themselves as decision makers. And that's very different from the Baby Doe case here in Bloomington, where it was actually concerned of the nurses I think that led to the appointment of a guardian ad litem and the case started working its way up through the court system, although the baby died before it reached the Supreme Court. Next slide. So Jim Gustafson I think has a different view on this that's worth revisiting 40 years later, 50 years later. And that's partly inspired by Wallace Stevens, 13 ways of looking at a Blackbird. There are lots of different perspectives from which you can look at a Blackbird. Next slide. So from Gustafson's point of view, once the infant is born, it enters into a relationship with other human beings. And those relationships are very important in trying to reach a decision about whether the baby should have surgery or not. We need to evaluate that baby, not just as that human specimen, but as a human being in relationship with other people, including most prominently the parents and siblings, but others as well. Next slide. So how do we reach a decision in this case? Well, from Gustafson's point of view, this infant's dignity, this infant's human worth doesn't just depend on its IQ or its predisposition to leukemia or the fact that as an adult, it would probably develop dementia sooner than a person without Trisomy 21. It's these relationships and respect for what I think Gustafson might have called the inherent human dignity or worth that should figure largely in our decision-making. But the key point here to make is that I think Jim Gustafson saw ethics as embedded in the context of relationships. We need to know what relationships exist and what relationships might or perhaps even should exist in the future. Next slide. So there's an intrinsic value, perhaps to every human being, that doesn't rest on that person's IQ or projected future earnings or net worth or what academic degrees they might accumulate. We're all human. Boy, this really cuts against the grain of the eugenics movement that swept across the United States in the late 19th and early 20th century in which the thought was if we could categorize human beings appropriately, we could determine who's fit and who's unfit and shift resources appropriately. So we increase the proportion of the fit and decrease the proportion of the unfit. Jim Gustafson's not interested in fit versus unfit, I don't think. He's interested in the relationships in which this human being is embedded and how those relationships might develop in the future. Perhaps someone who thinks they find it difficult or impossible to love such a child today might with experience discover that they can love that child no less than their so-called normal children. And you can see an argument here for things like support groups, you know, parents, other parents of babies with tries only 21 and the opportunity to speak with them about their experience. Next slide. So we can't just make people conform to our vision of human work. We need to look carefully with our eyes. We need to listen carefully with our ears but perhaps open our hearts to try to appreciate who a human being is, who they might become and what relationships might characterize their lives. We've all known people with tries only 21 who sometimes strike us, I think, as maybe unusually cheerful and in some cases unusually loving. I don't want to say by any means that's always the case far from it but you know, people with tries only one have performed at Carnegie Hall, have been regular cast members of network television series, have competed successfully in Ironman triathlons. I mean, people whose genetic prospects of leading a full life appear truncated may actually, you might say, amount to more than we think. Next slide. This by the way, mercifully is the last slide but I think from Jim Gustafson's point of view, theological ethics, we have a kind of vocation, a calling. We are called perhaps as physicians, other health professionals but above all as human beings, we are called to be open, to be curious and to have a kind of bias toward affirmation of the value or worth or the lives of other human beings. And we need to very carefully understand what that worth is at the moment, what it might amount to in the future and we need to do so particularly in terms of relationships. For Gustafson's point of view, we don't understand the human being by sequencing their genome, by dissecting them on a table or even by encountering them one-on-one in our offices or at the bedside in the hospital. We really need to understand that person's family, friendships, communities. We need to see the person as part of a network or I might prefer to say web of social relationships and that's the context. And of course for Gustafson, that web would include God, the idea that every person is a child of God we're brothers and sisters and I recognize that's not the most common perspective on these matters but I think it's one Jim Gustafson would urge us to consider. Thanks very much. It's a treat to be with you. Thanks to Mark and the center. Thank you so much. Next on our panel is Dr. Far Curlin. Dr. Curlin is Josiah Trent, Professor of Medical Humanities and Co-Director of the Theology, Medicine and Culture Initiative at Duke University. Before moving to Duke in 2014, he founded and was Co-Director with Daniel Solmacy of the program on Religion and Medicine at the University of Chicago. He is co-author of The Way of Medicine, Ethics and the Healing Profession as well as more than 130 articles and book chapters dealing with the moral and spiritual dimensions of medical practice. Far claims to be Mark Siegler's favorite trainee. Thank you, Lexi. It's really a privilege to join this and I do make that claim and interestingly picking up on the talk Richard Gunderman just gave, I don't think it's an accident that Gustafson was a mentor to Mark Siegler 50 years ago for the formation of the way Mark, in my mind, embodies something really good that should be preserved in his seriousness about the moral practice of medicine. I wanna just think about a story together that is the story of two practitioners of medicine today. As many of you know, roughly half of all US positions meet criteria for burnout or at least burnout as measured and described with the Maslach burnout inventory. And that's a level of burnout that's roughly twice as high as you find with other professions. And so you have this story of people going into the practice of medicine because they perceive it as a worthwhile way to spend their life as something very good. I mean, stereotypically people go into medicine with the sense that they wanna do good for others. And yet they go through training and they end up out in practice and at some point they look at themselves in the mirror and they find themselves asking what is all that I'm doing have to do with being a good physician? They find themselves thinking about how to reduce the amount of time they spend caring for patients. This is a widespread phenomenon. So how do we make sense of this? The predominant way to make sense of burnout to this point within the profession of medicine is to see it as a problem of work-life balance and a problem of inadequate self-care. So such that if a person is burned out, they need to get their life a little higher on the balance relative to their work and they need to do some more things to care for themselves like yoga, meditation, ice cream, vacations, et cetera. What's the problem with that way of construing burnout? Well, there's at least two. The first is it doesn't fit the story of most or at least many physicians experience a burnout. It's not the case, first of all, that physicians today are working longer hours than they worked in the past. It's not the case in my experience talking to physicians typically that someone has given up the rest of life for work and that's why they're burned out. And it's not the case that they stopped caring for themselves. So it doesn't seem to fit the story. But the second problem, and I think this is really critical is that making burnout a problem of work-life balance and self-care treats work, namely the work of medicine as if it's the threat to the wellbeing of the practitioner such that to flourish or at least to have the opposite of burnout, one needs to do less work in order to have more life. Insofar as we construe medicine that way, it seems to me perfectly reasonable for physicians to detach insofar as they can from their work because their work is a threat to them. My proposal to you is that the answer to burnout is not to detach from medicine. The answer to burnout is not to reduce work and increase life, but that this problem of detachment that is occurring in a widespread manner is best answered by detaching from a particular problematic construal of medicine that has come to be profoundly influential in our time and to recovering what I'm gonna call the way of medicine. And that is the title of a book that I recently written with a colleague. So that's a shameless plug for that. So what's our situation? It seems to me and to my colleague Chris Tolson that for the better part of two generations, medicine has been operating with two rival accounts of what medicine is for. These rival accounts are both operative in most positions practice to varying degrees and at different times. Under one construal, what we call the way of medicine, an older and more tradition to understanding of medicine, medicine is that moral practice that attends to people whose health is threatened or to those who are sick, seeking to preserve and restore their health. So it's a kind of paradigmatic moral practice or art that involves the pursuit of the patient's health where the patient's health is a real thing. It's an objective good for the patient, not the only good, but a genuine good that a person therefore reasonably devotes himself to pursuing. And that's the vision of medicine that's operative when people show up in the emergency department, bleeding when you find somebody by the side of the road, even when somebody comes in out of breath, it accounts for a great deal that physicians do still in our time. We don't ask people, what do you want? We're not perplexed what medicine is for. We get started, we move intuitively and reasonably to preserve the health that is threatened in that patient. But there's another construal of medicine that has grown in its influence. And if you look at areas of ethical controversy, this construal of medicine has come to be the dominant one. And it's what we call the provider of services model. How do we come about with the provider of services model? Well, partly by the rise of industry and bureaucracy across modern life, where as the late sociologist Peter Berger says, the ideals that govern industrial production, namely that we have efficiency and that each part of the industrial process is reproducible, we come to take that understanding over into other areas of life, including medicine, where it doesn't belong. But then physicians come to understand themselves as a cog in a machine. And that's one reason, I apologize for the background noise here, that's one reason, but another reason we have this provider of services model is because of some profound moral shifts. And that is toward, that is toward there being a move from the pursuit of health as an objective good for the patient to the pursuit of what is gonna be called wellbeing, where wellbeing is a intrinsically or a self-consciously subjective notion that reduces in the end to whatever it is that the patient says he or she values or wants. And how does this process relate to the physician's experience? In the way of medicine, again, health is an objective good. Because health is an objective good, it's something that can be known by physicians with expertise and with authority. And just give you one pause. And therefore the doctor has reason to use her judgment in pursuing the patient's health because she develops expertise about this objective reality in the world that she's devoted her life to understanding and pursuing. And I think that helps to make sense of what Mark Siegler called for with his model of the physician patient accommodation. Makes sense of the idea that health is a real good that both patient and clinician are pursuing because they have different advantages on or perspectives on that good. They have to reason together about how to pursue it and ultimately have to respect each other's authority to decline to pursue it in a way that they're not willing to pursue. But in the provider services model, the health is defined in such a way that it becomes a subjective notion that is not in the end gonna give us any direction beyond whatever the patient fills that concept with. And so we've had a shift in language to a great deal from the idea of medicine as the pursuit of health to the idea of medicine as the pursuit of wellbeing. And when medicine is pursuing a subjective norm of the patient's wellbeing, which is as the patient perceives it, then the physician's judgment comes to be not a resource for discerning what health requires, but a threat, a threat of interfering with the patient getting what he or she has chosen. He or she determines is valuable to him or her. And one symptom of this is the growing calls over the past 20 years for physicians who are conscientiously refusing to participate in one ethically controversial practice or another to be pushed out of medicine or sanctioned because this is understood as physicians letting their personal values get in the way of the right practice of medicine. So you have the provider services model ascending, the way of medicine kind of declining in its influence and particularly so in areas of ethical controversy. What are consequences for this? One consequence is that we get a lot of ethical digressions and transgressions, whether it's the practices of abortion or euthanasia, which explicitly and objectively contradict the patient's health as an objective norm, becoming newly imaginable and even desired and even ethically obligatory because those are wanted for what the patient perceives as his or her wellbeing. We, Richard mentioned the whole movement of eugenics where people were forcibly sterilized. Another example of the kind of action that can make sense under a provider of services model where the patient's health, the health of these women who were being sterilized was not a norm that doctors thought they had to respect if there was some other greater wellbeing that they were pursuing. And when we as medicine engages in these transgressions and digressions, it undermines the coherence of our profession, undermines the trust that I believe we depend on for patients to give themselves over to our care when they need that care. But with respect to the physician I mentioned, the story of the doctor who believes she's called to medicine and then later thinks, what am I doing? How does this, what I'm doing relate to what I thought I'm called to do? I think we see a few things happening because of the provider of services model first. We see what the late sociologist Peter Berger and colleagues called moralized anonymity, which means that in our time, the doctor comes to be habituated to thinking of herself as a representative of the one profession in this bureaucratic industry. And as someone who should not let her personal stuff, her personal values get in the way of being a reproducible representative of that profession. So, and this is something that's not only seen as kind of inevitable, but something that's desired. So doctors start to police themselves to say things like, well, it's not about me. I mean, I don't think that's good for that patient, but it's not really my place to judge. And so they have this moralized anonymity. That leads to a thinning out of the doctor-patient relationship. You don't have a relationship between, we don't have much of a relationship when your interactions are just the provision of services and where the physician has no pretense to being pursuing something that's genuinely good or having to use his or her judgment to discern what that good requires. So the idea of trust, which reflects a confidence that the other has one's own good in mind, gives way to just reliance, a kind of dependable expectation that the other will give you or provide services that one seeks. That's not, particularly for patients who are sick, reliant, not the same thing as trust, it doesn't. It's not the thing that really is essential to medicine. Clinical ethics becomes procedure. I saw that sitting around the McLean Center conference room table, all those decade of case conferences, people doing clinical ethics in our time spend more of their time thinking about who is authorized to choose than they do asking which choice that would be ethically commendable. What ought they choose once we determine who has authority and what the scope of that is. And so I think in our time, because of the Ascent to Provider Services model, something like Mark's vision of clinical ethics, of clinicians being, learning to just refine and heighten and gain wisdom about how they discern the right way to practice, appears a kind of arbitrary appeal to and a nostalgic appeal to an old privilege of the guild, because if we're just providers of services, why would we presume the doctor has any more expertise about what should happen next than the patient, except as a technician? And then medicine changes from a calling to a job. So Robert Bella in the Habits of the Heart, Habits of the Heart, Robert Bella and colleagues talked about the different ways of understanding one's work. And according to them, insofar as one understands the practice of medicine as a job, then we do the work for the benefits it brings that are external to or extrinsic to the work itself, most obvious one being the salary we earn. But insofar as you experience medicine as a job, then if you find a way to get the same external rewards, the same salary, let's say, with less effort, with less requirement of the, you'll do that, because after all, medicine has only an instrumental purpose for you, instrumental toward those extrinsic goals. But insofar as you understand your work as a calling, then the work it is the reward, or at least to the extent it's a calling, then that work itself is the reward you're after. And I would argue that most physicians go into medicine thinking of the work as a calling. That term has roots in Christian theology, but it's been widely used and culturally now such that even doctors who have no religious faith, most of them will identify their work as a calling. But you can't really have a calling to provide services to be used toward an end about which you're not to be making any moral judgments. You can't have a calling to pursue that, which is not genuinely good. And I think this becomes a problem for doctors because also because if medicine were just a job, then I think it wouldn't be as demoralizing as so many physicians experience it to be today. But rather what doctors are experiencing is a sense that it is wrong to do the work of medicine as if it is a job, as if it is just the provision of healthcare services. So they're both habituated to do the work as if it's providing services. And they sense this is wrong. This is not doing justice to the practice of medicine. Patients in the end are gonna suffer as a result of this. Charles Taylor, the philosopher says, endemic to the modern modernity is a, people have a sense of decreased agency because of the complications and complexity of all the systems we inhabit. And that leads along with this provider of services model to a kind of detachment. So when doctors detach, they detach from their work, they necessarily detach from their patients. They don't care as much if they're just providing services as they would if they were seeking the patients genuine good. So lots of efforts have been made to renew the practice of medicine. I propose that the reason they continue to fail is they continue to leave in place this provider of services model, this idea that only the patient can say what his or her good is. The antidote to burnout, it's not self-care and work-life balance. It's detaching from the provider of services model and recovering the way of medicine. Thanks much. Thank you. Please do keep those questions coming. And also Peter Singer, although he can't join us for the Q and A, says that you can ask and answer questions through Twitter at at Peter A. Singer. Next, it's my pleasure to introduce Dr. Lynn Janssen. Dr. Janssen is an associate professor at the University of Arizona. She works in the area of bioethics, research ethics and clinical medical ethics. She is the co-editor of theoretical medicine and bioethics and the managing editor and occasional contributing editor for the journal, Social Philosophy and Policy. Welcome, Dr. Janssen. Thank you, Lexie. And thank you, Mark, for inviting me to be a part of this conference. Just to start out, my title of my talk, as you can see in that brochure, Medical Beneficence, Non-Maleficence and Patient Well-Being. Textbooks in medical ethics standardly claim that clinicians must adhere to a principle of beneficence and a principle of non-maleficence. There are other ethical principles that apply in medical practice, I know, but these are the two principles I wanna focus on today. My question is simple. Why two principles rather than one? The principle of beneficence demands that clinicians benefit their patients. The principle of non-maleficence demands that clinicians not harm their patients. But if you harm a patient, then you don't benefit him. And so it would seem that the principle of beneficence already covers or includes the demands expressed by the principle of non-maleficence. So again, why two principles rather than one? This has always puzzled me. Perhaps the explanation for the two principles is merely pragmatic. The principle of non-maleficence is introduced for matters of emphasis. So clinicians should benefit their patients, but above all, they should not intend to harm them. This is the view suggested by Beecham and Childress. But theoretically, this explanation is not very satisfying. And moreover, the line between not benefiting when one is obligated to benefit and harming is a slippery one. Others, such as Robert Beech, find no place at all for the principle of non-maleficence in medicine. We always, he argues, have to balance benefits and harms. Ridiculing the principle of non-maleficence, he writes, quote, the best way to conform to it would be never to do anything at all for patients. One would thereby never harm the patient, although great opportunities to do good would be lost. So in my talk today, I wanna propose a new way of thinking about beneficence and non-maleficence that explains why we do, in fact, need two principles rather than one. I think what I'm going to propose captures pretty well what good clinicians do in practice, but I haven't seen it articulated clearly before. Doing so is worthwhile, I think. A clear articulation of what we do in practice and why we are right to do it can help us to avoid falling into certain mistakes, such as, for example, thinking that we are engaged in abjectural paternalism when we are not. So let's just start with a preliminary point. Whenever we speak of benefiting or harming a patient, we are presupposing some conception of what is in the patient's interests. But, and this is actually crucial for my discussion, sometimes when we speak of what is in the patient's interests, we have only a subset of interests in mind. And other times, we have a full set of such interests in mind. So for example, we might say that having a certain surgery is in the patient's best interest. When what we really mean to say is that the surgery would be in the patient's best medical interests. Perhaps the surgery, well, medically indicated is very expensive and we may acknowledge that it would not be in the patient's best overall interest to have the surgery, given how costly it is for her and her family. Now, once we've drawn a distinction between medical best interests and overall best interests, we can ask which conception of interests should figure in our principles of beneficence and non-maleficence. And once this question is raised, it can seem irresistible that the right answer to the question must be overall best interests. After all, why focus on a subset of interests when the whole set of interests is what really matters? This point comes to the forefront when we consider the much celebrated ideal of shared decision making between the physician and the patient. On this ideal, the physician and the patient cooperate to determine which medical intervention is in the patient's best overall interests. The physician brings medical expertise to the table and the patient brings her values and concerns to the table. Together, they reach a decision about what will advance the patient's best overall interests. Now, it is a fair question, I think, to ask just how widely applicable the ideal of shared decision making is. Perhaps it's only appropriate in certain special contexts in which there is a range of medically indicated treatment with no one treatment being clearly superior to another. But it is clear, I think, that there are some contexts where the ideal applies and it's also clear, I think, that in these contexts, the duty of medical beneficence directs the physician to search with the patient for the treatment that is in the patient's best overall interests. So here's a proposal. The principle of beneficence is indexed to the patient's best overall interests. In many circumstances, the best interests of the patient plainly coincide with the best medical interest of the patient. In other circumstances, such as those under which the ideal shared decision making applies, the best interest of the patient may go beyond his or her medical interests to include other interests as well. In either set of circumstances, the principle of beneficence is keyed to the patient's best interests overall. This proposal, I think, coheres well with what good clinicians do in clinical practice when the patients have a range of treatment options depending on their values and preferences. So we can think of this example of treatments for breast cancer, for example. So the principle of beneficence in medicine, I just proposed, encompasses the patient's best medical interests, but also goes beyond it to include the patient's other interests. But we must bear in mind that the patient's best medical interests can conflict with her best overall interests. A physician might know that a certain medical intervention, perhaps the one that the patient has requested after researching it on the internet, is contrary to the patient's best medical interest. But he may not know whether it would be in the patient's best overall interests. Interestingly, the physician may rightly be reluctant to accede to the patient's request, even if the physician became convinced that the proposed medical intervention was indeed in the patient's best overall interests. So I just present with you a vivid example, even if it's somewhat far-fetched, to illustrate this very point. A patient might request a drug for a mild condition that he suffers from, say, an irritating rash. Suppose that the drug has some side effect for some very small number of patients with a certain genetic profile. The side effect is blindness. And the patient, in our example, has this genetic profile. Yeah, and this is the far-fetched part, I suppose. The patient desires a drug precisely for its side effect. He's writing a novel in which the protagonist is blind and he thinks he will be able to write a better novel if he himself becomes blind. Perhaps he's right. And perhaps the successful completion of the novel would indeed advance his best overall interests. Still, a physician should not prescribe the drug to him. So this presents a puzzle. In cases like those involving treatments for breast cancer, the principle of beneficence is best construed in terms of the dancing, the best overall interests of the patient. But in cases like the one we just reviewed involving the novelist, a beneficent physician should not aim to promote the patient's best overall interests. And I wanna argue that it is precisely here that where we need the principle of non-maleficence to resolve that kind of puzzle. The principle of non-maleficence I want to claim is key to the patient's best medical interests. So we need two principles here and they are distinguished in part by the standard of best interests that informs them. The question then will become how the two principles function together. But before turning to this matter, I want to explain why I think other attempts to resolve the puzzle are unpromising. Obviously they can't consider all of the every possible attempt to do so here, but I think it'll be instructive to consider one such attempt. Recall that Veach, Veach's quick dismissal of the principle of non-maleficence. Veach pointed out rightly, I think, that in medicine we often must weigh benefits and harms. And so it's not helpful to have one principle directing us to promote benefits and another directing us to avoid harms. But if we reject the principle of non-maleficence altogether, how are we to explain why the physician should not prescribe the drug in the novelist's case? Veach's own attempt to do so is singularly unpersuasive. In considering a case in which the death of a patient would be in the best interest overall of a patient, but medically inappropriate, Veach claims that the physician can refuse to assist in the death of the patient on grounds that doing so would go against her conscience. Now this is unpersuasive for two reasons. First, in cases like the novelist or in cases like the one Veach had in mind, we want to be able to criticize the conduct of others. So we need a professional standard, not a personal standard here. And second, the appeal to conscience does nothing to explain our puzzle because after all, what we're trying to understand is what would justify the physician's conscientious refusal in these particular cases. So I mentioned Veach because I think he was particularly clear headed in appreciating the ways that medicine would have to change if we took the principle of beneficence to be a principle that was indexed to the patient's best overall interests and then we simultaneously jettisoned the principle of non-malethicence. It's my view that we should not jettison the latter principle. If we understand the two principles as answering two different conceptions of patient's best interests, then we can appeal to both of them in explaining the responses in the cases that I've been reviewing. Good physicians follow overall best interest in the breast cancer case, but they follow best medical interest in the novelist case. But now once we settle on this, how of course we need to think about the two principles are going to interact together. Given that they can pull in opposing directions, how should we think about how to prioritize them? One possible answer is that the two principles must be balanced. Balancing requires good clinical judgment and ethical judgment for sure. And there's not really too much we can say right now about how to make this work well at an abstract level. And at the end of the day, this balancing approach might be the right answer, but I'm actually attracted to a different answer. We can view the principle of non-malethicence as a filter or a constraint on acceptable medical interventions. The interventions that pass through the filter are available for selection by the principle of beneficence. On this view, clinicians ought to recommend the treatment option that among the options that pass through the filter established by the principle of non-malethicence would best promote the patient's overall interests. This would make good sense, by the way, of the notion that beach ridiculed that in the first instance, physicians should do no harm. On the view that I favor, we can say that physicians should promote the best interests of their patients, but only insofar as doing so does not set back their medical best interests. This injunction reflects the fact that medicine is a value-based profession, one that is oriented toward the health of the patient, as opposed to the other interests that the patient has. On this, the view that I'm proposing, an important issue is how to determine the content of the constraint or the filter imposed by the principle of non-malethicence. I can't discuss this challenging matter here, but I do want to conclude by making one point about it. In discussing the novelist case, I insisted that the relevant standard for doing no harm must be a professional, not a personal standard. Given expected reasonable disagreement among physicians over what qualifies as an acceptable medical intervention, we should expect, on occasion, clinicians will judge that the acceptable medical intervention as set by the professional standard I described and the principle of non-malethicence will not be in the patient's best medical interest. Still, if the intervention would be in the patient's interest overall, then it would be appropriate for the physician to prescribe it. Now, is this a problem? Is this a problem for my view? I don't think so. Despite his personal belief that the intervention would set back the best medical interest of his patient, such a physician could accept that it does not contravene the standards imposed by the principle of non-malethicence. He could truly say that he was committed to promoting the best interests of his patient, but only insofar as doing so would not set back their best medical interests as determined by the standards of his profession. So I conclude that we do need, in fact, two principles instead of one, because we need to work with different understandings of the patient's best interests. And the hard work, of course, lies in figuring out how the duty to promote the patient's best medical interest constrains the duty to promote her best interests overall. So thank you. Yeah, I'm finished. Thank you again, Alexi. Thank you, Dr. Manson. Next, it's my pleasure to introduce Dr. John LaPouma. Dr. LaPouma is the New York Times best-selling author of seven books translated into 10 languages and selling over a million copies. He is the co-founder of ChefND, a consumer health media company, and is considered the founder of Culinary Medicine, now taught in 50% of US medical schools worldwide. He is also founder of ecomedicine.org, a new field of practice and research in medicine and a nature-based approach to optimal personal and planetary well-being. Dr. LaPouma has lectured on nature therapy, ecomedicine, and culinary medicine. He co-hosted the National Cable Weekly Series Health Corner for Lifetime TV for five years and 120 episodes. He's published over 60 peer-reviewed scientific papers, three medical books, and hundreds of other works. Dr. LaPouma currently focuses on helping patients connect with nature, especially gardening as a way of enjoying themselves while also improving mental focus, generalized anxiety, and obesity. He has identified nature deficit disorder as a clinical problem. He considers nature to be an outpatient clinic with the ability to help people live, feel, and look years younger. Dr. LaPouma currently stewards a certified organic and regenerative demonstration and sensory urban avocado and rare citrus farm in Santa Barbara, California, and consults on therapeutic gardens, food forests, and hospital gardens. Welcome, Dr. LaPouma. Well, thank you so much. It's such a pleasure to be with you all. And Mark, thank you especially for the invitation, for the mentorship, the kindness over the years, and this great conference. I'm so grateful to be here. I'm gonna speak today with you about eco-medicine, which I think is a new evidence-based field in medicine and its ethical issues. This talk has five parts. Eco-medicine's definition, our patient cases, its evidence base, and its contributing disciplines, and then three major categories of ethical issues I think it raises that are relevant for all clinicians. Eco-medicine can be described as the prescriptive, evidence-based use of natural settings to prevent and treat symptoms and diseases and to enhance well-being. Its vision is to be available to every family, regardless of their proximity to blue or green space, blue space, of course, being space associated with water, and green space being associated with plants. The scholar who is credited with coining the term bioethics, Van Resler Potter, who's booked bioethics and helped to jumpstart the field, actually thought of bioethics as being concerned with environmental issues, not with biomedical ones, but because of the biomedical issues of the 70s, philosophers and then clinicians turned their attention towards the idea that bioethics was about biomedicine and not about the environment, maybe Van Resler Potter had it right. Oliver Sacks wrote about the healing power of gardens. He thought that music and gardens were the two modalities that would reach patients with neurologic injury or conditions that no other therapies would. He suggested and wrote about an elderly lady with Parkinson's disease whom he met in Guam, this from the New York Times piece a few years ago, often finding herself frozen, unable to initiate movement which as you know is a common problem for those with Parkinsonism. But once he writes, we led her into the garden where plants and a rock garden provided a varied landscape. She was galvanized by this and would rapidly unaided, climb up the rocks and down again. And for those who were taking care of patients with Parkinsonism, that's quite an image. Joshua Shore wrote in the New England Journal a piece on how birding, the identification of birds by their sounds and sights cured his burnout. And I've spoken with Dr. Shore after he wrote his essay and he's heard from many clinicians to find nature to be exactly what they need to deal with the pressures of clinical medicine. Howard Frumpkin, this is now the research agenda for eco-medicine wrote this piece in 2017 with his colleagues at the University of Washington when he was Dean and the School of Public Health there. And this review of several hundred articles has now formed the basis of the NIH's agenda to give out grants in this area. Frumpkin and his colleagues looked at both the medical benefits of nature and the mental health benefits. And most people don't appreciate that there are data describing exposure to nature specific nature experiences and interventions that have improved post-operative recovery, that have reduced obesity and diabetes, that have improved and even reversed myopia. We're more familiar with the mental health benefits of nature, the reduction in anxiety and depression, which of course are epidemic with the pandemic. This review coming out next month in population health scans even more pieces. It's a meta-analysis that looks at different outdoor activities and focuses on them and their benefits for mental and physical health. Literature in this area is growing quite rapidly as is its quality. I think that the movement towards eco-medicine, the idea that nature can be a specific therapeutic modality by itself, both preventing and treating diseases and proving well-being, the purpose of medicine according to Godwandi and others is the result of two great migrations. One is a migration inside that we've taken. We spend 87% of our time in buildings and 6% in vehicles. And that was pre-COVID. A recent analysis I saw suggested that we spend 90% of our time in buildings inside. The second big migration has been to cities. In North America, we spend 82% of our time in, excuse me, of us live in urban areas, but just 5% of US land is urban, which means that we sort of push nature out as we infill inner cities and that has direct health and other consequences. One of which is that we are more and more disconnected from nature and don't understand it well as part of our lives and think of it ourselves as separate from it when we're actually a part of it. This slide from an epidemiologic journal last year shows a trend in reduction of hypertension and cardiovascular disease and diabetes prevalence as incidence rather, as tree canopy increases and total green space increases. These are done with fascinating satellite photos and drone photos showing that diabetes and hypertension and cardiovascular disease, both with total green space and with tree canopy decline. Of course, there are many factors in this, but I'm gonna show you some data that suggests that green space is directly associated with health in not just these ways. This slide captions a study done identifying outdoor play and outdoor space as a reversing and halting the progression of myopia. As you know, myopia is epidemic in Asia, especially between up to 90% of kids in Asia are myopic, 40% of Californians are myopic, about 30% overall more in Asian folks. And that's thought to be in part because of near work, the idea that everybody has a phone or screen often and perhaps being outside can reverse that. In fact, it seems to have. Here's a study putting together four studies showing that you need about two hours a day to improve myopia and slow its progression. This is thought in part to be because of the light simulation of retinal dopamine, which modifies axial growth. In Singapore, there are public health campaigns to go outside to keep myopia away. This is a study that summarizes a pilot that we did in Santa Barbara with the Sansom Clinic, showing that kids who looked at virtual reality of swimming under the seed with fish looking down at the beach and looking above at the sky, while getting a flu shot had 50% less pain, 50% less fear of injection and much happier experience. The nurses who got the same questionnaire thought so too. And the nurses actually thought the clinic went more smoothly. Their parents got the same questionnaire and had the same vision. This is a study published in 2003, interestingly, in chess, showing that pain control during bronchoscopy for people who got before the bronchoscopy, the visual scene of a babbling brook, as well as the accompanying sounds of a babbling brook, had about 50% better pain control than ordinary pain control for bronchoscopy. This is a randomized control trial as well. This study, which came out in June of this year, showed that enriched gardens, which are gardens with stimulatory modules like musical instruments, actually improved cognition, improved memory short-term, and improved behavior among nursing home entrances that had dementia. This is a small pilot control study, just about 40 people, but it was in multiple sites and bears, of course, more interest. There are a number of disciplines that contribute to this new idea of eco-medicine, architecture, aromatherapy, clinical medicine, of course, horticulture, forestry. It's a multi-disciplinary contributed field. Now, not everybody's used to prescribing nature, so I'm going to show you what that can look like. I think you need to sit down, Martin. Please. Okay. Look, there's no easy way to say this, but your nature levels are low. My nature levels? Yes, you tested negative for hiking, negative for landmark exposure, and sunset vistas. I tested negative for sunset vistas? Also, your pine needle numbers are almost anemic. And in my 35 years of practice, I have never seen someone with camping scores lower than you. Oh, my gosh. I hate camping. I know you do, but we got to change that, okay? Okay, okay. I think you need to sit down, Martin. Please. Okay. Let's play the whole game. Okay. Let's play the whole thing. Eric, go ahead and play the whole thing. Let's see. I think you need to sit down, Martin. Please. Okay. Look, there's no easy way to say this, but your nature levels are low. My nature levels? Yes, you tested negative for hiking, negative for landmark exposure, and sunset vistas. I tested negative for sunset vistas? Also, your pine needle numbers are almost anemic. And in my 35 years of practice, I have never seen someone with camping scores lower than you. Oh, my gosh. I hate camping. I know you do, but we got to change that, okay? Okay, okay. Am I going to live indoors the rest of your life? No. In fact, I'll tell you what. I'm going to write you a prescription for the national parks. There's a lot of stuff you can do there. They got, you know, animals, bears. You'll love it. Anyway, they got coastlines, grasslands, history, culture. Right away, you're going to notice that your annuals are going to bounce right back, dude. My annuals? Nature engagement levels? Right. So that's one way to prescribe nature. There are others. Here are some specialty fields in eco-medicine. Eco-therapy, which takes a psychological approach. Care farms, which are residential. Thousands of them actually in the Netherlands and hundreds in the UK. Forest bathing, which has become popular and with classes offered everywhere from Harvard to Santa Barbara, Botanic Garden, and therapeutic horticulture, which guides individuals who are PTSD or ADHD or other problems focusing. It's really a burgeoning field. We created naturedeficitquiz.com and comfortnaturequiz.com to help patients identify what were their favorite places in nature and to learn more about them and enjoy them more. Comfortnaturequiz is the idea that you have a comfort nature place. You have a comfort food, about which I've spoken in this forum before. Comfort nature places also seem to alleviate stress when you're in them and enjoy them. If you don't know what yours is, you can take the quiz as can your patients. We'll send three options to you with little audio clips of each. Here are three big categories of ethical issues that eco-medicine raises that I think are relevant for clinicians and that I'd like to discuss with you now. The first has to do with equity and we've heard quite a lot about that here already in the last couple of days and it's also true for nature. The idea that nature is not distributed evenly or equitably that it is a therapeutic value and yet not everybody has access to it, in large part because of structural racism but also in part because of income and simply neighborhood. These issues are essential to health and I'll show you in a moment why. Clinicians, I think, ought to prescribe parks if patients want them and can determine the park and actually that's been tested, whether you should go to a park that your clinician suggests which is not as good as the one that you might like but what about parks in unsafe neighborhoods? Should we recommend nature in unsafe neighborhoods? Seems like a hard no and yet there may be benefits and of course what about people who do not have access, people of color, indigenous peoples, does it serve not to recommend nature to them because of their many access difficulties, the many buses and then the many buses back if they're lucky. Next. So here's a piece from PLS-1 that shows tree cover and temperature disparity in urbanized areas across 5700 communities as published in the spring of this year showing that among others Chicago actually is way up there in the need for better tree cover which is fascinating because Chicago itself is so rich in trees we think, we think of many parks and beautiful neighborhoods but of course in tougher neighborhoods and here in the south side there, those trees don't exist and what effect does that have? Well actually urban trees are active. They're active like medications are active. They have these different benefits. They reduce air pollution, they cool, they provide shade but they also increase physical activity and support social cohesion. One of the benefits of nature that many people don't get is that you actually are able to run into other people and socialize and it gives you a better sense of community in better neighborhoods. There's a great piece about air pollution in the New England Journal this week that identifies tree canopy and its absence as a social determinant of health which it really should be. I'm going to say a little bit more about that in a moment. Here the second major category of issues are conflicts with policy and during COVID we heard that we ought not to go outside, that we ought to stay inside and of course many of us have taken this to heart and in fact continue to take it to heart even as we open up and yet it isn't clear that that's the best choice that maybe clinicians ought to override this public health advice because it's so difficult to get COVID outside and also because nature has benefits that you don't get inside although the benefits of inside nature need also to be examined in more detail. Whether hospitals and clinics ought to allocate space to natural settings like gardens and many of us know that gardens of course go way back in fact sentries back as part of hospitals and medical schools and actually used to provide medication for the formularies as well as solace for patients and families and for hospital workers. In fact the garden that I helped design with the great architects at MBBJ for Loma Linda University included a cardiovascular garden an immune garden and a pediatric garden but one of their primary purposes was in fact for respite for hospital workers to find a cove and a quiet place to be with their thoughts outside in a green or blue setting. And then finally technological and technical issues in eco-medicine I think these are also fascinating you should augment in reality and virtual reality and Mark Zuckerberg's new metaverse and a prescription for the kind of goggles that we showed kids to help them with their flu vaccines substitute for actual lived nature experience what is the difference between that kind of experience that's one sense or two senses versus one that's five senses when you go outside should you turn your phone to no notifications to airplane mode to not at all so that you can better experience nature including in fact all of your senses and that's actually how nature is best experienced through your senses and speaking of that what about the earbuds that we wear everywhere sure we're learning things we're hearing music we're doing something else but does it deprive us of a beneficial soundscape and then finally what about raising hydroponic vegetables there are real benefits to having your hands in the soil there are bacteria that raise your serotonin levels there's the connection with the earth that's quite physical there's a nurturing of something that bears fruit that you've taken care of is that the same for hydroponic gardens or do we all need to have our hands in the dirt so here are some quick summaries of that's a quick summary of eco-medicine has a new evidence-based field in medicine and three ethical issues thank you so much for your attention I look forward to your questions thank you so much Dr. LaPoumote always gives me new things to think about the last speaker on today's panel for this current panel is Dr. Valerie Gutman-Cope she is the director of law and ethics at the McLean Center and is also an assistant professor and the co-director of the Health Law and Policy Institute at the University of Houston Law Center previously Professor Cope was the Jeharus Visiting Fellow at DePaul University College of Law and the Special Advisor to the New York State Bioethics Commission Task Force on Life in the Law widely published in peer-reviewed literature some of her recent works include eliminating liability for informed consent to medical treatment research revolution or status quo the new common rule and research arising from director to consumer genetic testing her work has also appeared in journals such as the Hastings Center Report the American Journal of Bioethics and the Journal of Law, Medicine and Ethics Professor Cope earned her law degree from Harvard Law School where she was the co-editor of a section of the Journal of Law, Medicine and Ethics she currently serves as chair of the American Bar Association Special Committee on Bioethics and the Law co-chair of the Law Affinity Group the American Society for Bioethics and Humanities Welcome Professor Cope Thank you Thank you Dr. Siegler for having me always one of my favorite conferences of the year and I want to thank Dr. Angelis as well for giving a talk on a similar issue two years ago which really lit the fire under me to continue pursuing this project because this paper is really presenting a concept of the pre-vivor to the legal literature it's not something that's been in the literature thus far and I do so in order to evaluate whether current law and policy is adequate to addressing the changing circumstances of the medical decision making and patient experience so essentially I'm using what I call mentorship as a case study demonstrating how how the practice of medicine and medical decision making is evolving to render current law and policy even less applicable to medical practice so first what is a pre-vivor? so the term pre-vivor developed in response to an identified need within the population of individuals with mutations in the BRCA genes which can confer elevated risks of ovarian and breast cancers among other cancers and so a member of that community posted on a support site seeking a label to describe individuals who test positive for a genetic variant but who have not yet shown or maybe never will show symptoms or have yet been diagnosed with disease so in 2007 the term made time magazine's top 10 buzzwords list and it's rather ubiquitous today so but the definition of pre-vivor that is most commonly offered in the popular literature is almost exclusively limited to individuals with mutations in the BRCA genes this definition categorically excludes individuals with a predisposition to illnesses other than hereditary breast and ovarian cancers so this current definition of pre-vivor is problematic both for law and policy as it applies to medical decision making and access to medical and scientific resources in particular the vast amount of research and knowledge as it pertains to BRCA mutations can be contrasted with the dearth of research and resources devoted to studying other hereditary diseases due to systemic bias inherent in clinical research and medical treatment and disparate resource allocation so granting special attention and protections to only those with BRCA mutations or only those with access to medical and scientific advancements or with the resources to self-advocate will further exacerbate inequities and healthcare disparities so extending the definition of pre-vivorship in society and in the law is one small step towards ensuring fairer and more just treatment of those who learn they have genetic predisposition to disease so I'm therefore first my first step in this project is to propose a definition that aligns with the conceptions of medical and legal justice and includes all individuals with hereditary mutations in the history of a specific disease or some other predisposing factor to disease for which preventative action can be undertaken in other words the definition of pre-vivor must be inclusive of all individuals with a known clinical clinically actionable risk to a life-threatening, severe or chronic illness or condition so the pre-vivor experience challenges many of the basic assumptions underlying traditional understandings of medical decision-making in many ways pre-vivorship is a category that defies the traditional boundaries of medicine and the pre-vivor identity is distinct from the long accepted conceptions of what it means to be a patient so the advantages of adopting a label such as pre-vivor can empower an individual at a time of great uncertainty in their life identification may make pre-vivors feel less alone a pre-vivor is part of a community of similarly situated individuals significantly the pre-vivor experience raises important questions for the practice of medicine what does it mean to treat someone or something that is not yet manifested as disease what does it mean to be treated for risk rather than illness adopting the pre-vivor label can shift an identity non-symptomatic and perhaps never symptomatic individuals become patients by virtue of a lab test seeking medical treatment or surgical interventions that normally are reserved for the sick in the context of when an individual learns that he or she has a genetic predisposition to a certain disease state he or she may begin to then occupy a hybrid role somewhere between sick and healthy and in the context of pre-vivor decision making around which if any prophylactic interventions to accept to reject or delay I also distinguish between risk on one side and uncertainty on the other at a basic level risk refers to the probabilities that are associated with the possible outcomes that are assumed to be known while uncertainty refers to probabilities that we assume not to be known and this shall define uncertainty as quote the inability to determine the meaning of illness related events numerical risk is only one aspect of an individual's decision making around whether and when to undergo preventative interventions other less quantifiable influences include experiences with a family history of disease whether the individual has children the individual's level of risk aversion of anxiety and even when it might be possible to provide specific and personalize risk assessments to an individual so that they can make informed medical decisions there's still barriers to relying on those measurements for example research has demonstrated that some individuals may not believe their personal risk numbers so even when tailored risk assessments can be determined and communicated effectively it's evident that an individual's decision making does not depend solely on medical risks moreover all of those who test positive for a deleterious genetic mutation that increases one's risk of developing a disease share a fundamental element uncertainty scholars have attempted to develop systemic or systematic taxonomies of uncertainty in medicine recognizing that certain types of uncertainty particularly probability and ambiguity uncertainty may not in fact be reducible with disclosures genetic testing may exacerbate already existing uncertainty in medicine which will certainly affect individuals decision making for pre-vivors outcomes are uncertain both with and without prophylactic interventions pre-vivors are faced with heightened uncertainty when deciding which interventions to undergo which drugs to take which lifestyle changes to make if any where individuals decide to undergo prophylactic interventions or procedures they may be forced to live with a new normal and perhaps a new value system or view of life uncertainty may last beyond the individual uncertainty the individual must constantly manage inconsistency ambiguity and unpredictability over a lifetime so in the context of pre-vivor decision making around which if any prophylactic interventions to accept reject or delay I distinguish between risk and uncertainty so at a basic level risk refers to probabilities associated with the possible outcomes that are assumed to be known while uncertainty refers to probabilities that are assumed to not be known. Merle Michel defined uncertainty as quote the inability to determine the meaning of illness related events a numerical risk is only one aspect of an individual's decision making around which if any and when to undergo preventive interventions other less quantifiable influences include experiences with a family history of disease whether the individual is children the individual's level of risk aversion and generalized anxiety and all of those who test positive for deleterious genetic variants that increase one's risk of developing a disease also share a fundamental element this element of uncertainty scholars have attempted to develop systematic taxonomies of uncertainty in medicine recognizing that certain types of uncertainty particularly probability uncertainty and ambiguity uncertainty may not in fact be reducible through disclosures genetic testing may exacerbate already existing uncertainty in medicine which will certainly affect individuals decision making for pre-vivors outcomes are uncertain both with and without prophylactic interventions pre-vivors are faced with heightened uncertainty when deciding which interventions to undergo which drugs to take which lifestyle changes to make if any where individuals decide to undergo invasive prophylactic interventions or procedures they may be forced to live with a new normal and perhaps a new value system or view of life uncertainty may last beyond the individual decision point so that the individual make must constantly manage inconsistency ambiguity and predictability over time the role of the physician and the patient may also further shift away from the traditional doctor-patient relationship impacting medical decision making already with the evolution of the DPR and the advent of new and more advanced technologies patients increasingly bear the burden of dealing with uncertainty and even where physicians make all appropriate disclosures certain responsibilities may still shift within the pre-vivor clinician experience so in many ways the circumstances of pre-vivorship is particularly prone to shifting the full burden of medical decision making to the individual physicians have recognized that discussions with pre-vivors about possible interventions and discussions with patients already diagnosed with a disease may differ because the exploration of preventative or prophylactic interventions do not fit the traditional mold of the physician-patient interaction and because physicians may conceptualize risk differently than do pre-vivors some physicians may be reluctant to provide certain interventions for revivers particularly when the intervention is particularly risky and the physician believes it's not medically advisable and the pre-vivorship experience may alter the traditional informational and power asymmetries inherent to the doctor-patient relationship and that the legal doctrine of informed consent is actually intended to ameliorate. Pre-vivors are more likely to present to the doctor-patient relationship armed with the information necessary for an informed or at least voluntary medical decision. This shifts the information dynamic within this relationship allowing patients to somehow take the lead in charting the course of their own treatment. Moreover, online and in-person support networks like the one we saw earlier as well as informational websites intended for pre-vivors may decrease the medical profession's information monopoly. So this shift in the information dynamic from the traditional physician-patient relationship and the correlated erosion to the fiduciary relationship is symptomatic of the diffusion of care within the practice of medicine as physicians less frequently serve as the gatekeepers to medical knowledge, the traditional expectations and thus the goals of the informed consent process will continue to transform. So what does this mean then for the law of medical decision-making? So first I conclude that pre-vivorship exposes the inadequacies of the legal doctrine of informed consent. In earlier scholarship I recognize that there is a growing consensus that the legal doctrine of informed consent is becoming increasingly inadequate to protecting patient self-determination in medical decision-making. There is a disconnect between the legal doctrine of informed consent in theory and the application of informed consent in practice often rendering the legal doctrine inapplicable for which it was originally intended ensuring autonomous voluntary decision-making. Within this context the introduction of pre-vivorship to the medical landscape challenges some of the most basic assumptions about the doctrine. However, the pre-vivor experience isn't exceptional rather it's exemplary of the diminishing utility of the legal doctrine of informed consent to ensuring voluntary medical decision-making in modern practice. And it's illustrative of how medical and scientific innovations and the evolving doctor-patient relationship are rendering the legal doctrine of informed consent inadequate to ensuring and addressing patient's needs. For one the legal doctrine of informed consent places an affirmative duty on physicians to initiate and guide the informed consent discussion disclosing the risks, benefits, and alternatives of a proposed intervention without prompting for the patient. However, research has shown that pre-vivors often benefit from initiating these relationships and these informed consent discussions rather than relying on physicians to decide if to initiate discussions to explore possible preventative interventions. Second, the current model of informed consent is not suited to encouraging disclosure of or coping with the high levels of uncertainty that are intrinsic to pre-vivor decision-making. Pre-vivorship exemplifies and amplifies the inadequacy of the legal doctrine of informed consent to address the limitations of effective action in the wake of uncertainty. First, the legal doctrine of informed consent fails to embrace uncertainty itself which neglects considering personal concerns such as psychosocial issues and factors in medical choice. And the emphasis on mandated disclosures does little to address the existence of irreducible uncertainty underlying the pre-vivor experience. Having all available information may not actually eliminate uncertainty. Third, physicians are often reluctant or unable to disclose the uncertainty of prophylactic interventions within medicine with pre-vivors. Thus, uncertainty renders current law potentially ineffective in addressing the reality of the physician-patient relationship and the difficult decisions that are often left to pre-vivors to make. Moreover, the role of risk may take on increasing complexity in pre-vivor decision-making. Due to multiple categories of risk, the risk-benefit calculation may have to be adjusted for pre-vivors and the legal doctrine of informed consent is not well suited to addressing non-medical risks and benefits. So I end this project by looking towards the future. Particularly in light of shifting doctor-patient dynamics, the ever-increasing role of uncertainty, and the complexity of comprehending and processing medical and psychosocial risks and benefits, I argue that the time has come to move to a new model of decision-making. So we should begin to envision a legal doctrine that supports a robust shared decision-making approach to truly address individual preferences and values. Thus, increasing, well, and also in order to address the increasing complexity of risk-benefit analysis and assessment and the inherent and somehow irreducible uncertainty. The shared decision-making model is increasingly suited to modern medical decision-making. It emphasizes how information is communicated. It focuses not just on reducing gaps in knowledge, but also on managing uncertainty. It's also better suited to encouraging active participation and respecting the individual's values and preferences in determining a course of treatment. It emphasizes education and communication in an effort to improve patient comprehension and full and complete voluntary decision-making. It emphasizes the incorporation of decision aids in support of patient understanding and supporting communication for preference sensitive decisions. The medical, psychological, and familial sequelae of undergoing, refusing, or delaying a single preventative intervention can be difficult if not impossible to predict. Uncertainty and risk do not necessarily end after a patient or a pre-vivor has made a decision. Thus an informed consent model of medical decision-making that centers around a single decision point is insufficient. Rather, the focus should be to shift to integrate decision-making interventions that help individuals cope across their lifespan. But replacing the legal doctrine of informed consent is not enough. The pre-vivor experience underscores the deficits with the biomedical model of illness. Rather, the biomedical model should be replaced with a new, more expansive and inclusive model of illness. Over the last 50 years, scholars have emphasized the biomedical model's inadequacies in addressing conditions like mental illness, chronic disease, HIV, and disability. The emergence of pre-viborship as a medical status highlights the problems with focusing solely on risk, as well as the ambiguity inherent to the conceptualization of disease. The biological cannot be separated from the psychological, social, religious, socioeconomic, cultural, and personal aspects of the pre-vivor experience. In many ways, our current legal rules, and in particular the legal doctrine of informed consent, reinforces this biomedical model of disease by emphasizing the biological over psychological and social factors of medicine. In crafting legal rules for medical decision-making, it becomes necessary then to reconsider what it means to be a patient or participant in medicine. Thank you. Now we're going to bring in all the panelists. This was a fascinating set of talks, and I look forward to a really rich question and answer session. I'm curious how these will kind of cohere as time goes on. I'm going to start with Professor Koch, just because our minds are on your talk. So there was an interesting question about the line between pre-vivors and others with risk. Is it primarily the existence of available therapies and interventions? So would the boundaries move? It's an interesting question, and one I've been grappling with throughout this project is where line drawing, where do we draw the line on this definition? Because I think that the definition we currently have is way too narrow though. But when you start trying to be as inclusive as possible, you could end up really encapsulating pretty much everybody because everybody has risk. We all live with risk. We all have a likelihood of developing some sort of illness or disease in our lifetime. And so one of the ways that I did try to place some limitations on this definition in order for it to work within the legal doctrines that I'm trying to evaluate is to require that I mean requires maybe not the right word, but to make sure that the definition that the risk was actionable, that one could take clinical action based on that, but based on your variance or your risk. All that said, I'm very open to different definitions. As I've mentioned, I've been working with this for a while, and this seemed to be the most appropriate way to cabin off definition in a way that could actually be useful. But I encourage discussion going forward on this issue because I really am interested in coming up with the perfect definition of the prefire. All right. And I'm going to stick with your talk for just a moment. Mary Ann Brown asks, what do you think about shared decision making based on your thoughts about informed consent? Well, I hope that I to some extent referred to this in my talk. I think that shared decision making is the best of all possible options currently as far as new approaches. I think there's been a fair share of research indicating that it does ensure a process rather than a single moment in time in decision making that I think the legal doctor informed consent has sort of forced on medical decision making. And it has a lot of other advantages. That said, again, it's imperfect. And so I think there are ways that, and this is sort of one of the projects that I'm thinking about going forward is trying to explore if there's in the research other approaches to medical decision making that allows a free viver to address uncertainty in a more robust fashion in their decisions with the support of clinicians and other providers. So again, I'm very open to furthering this discussion and continuing this discussion on that issue. Dr. Curlin, there are several questions for you. Dr. Monica Peaks says, interesting presentation. I'm concerned about putting abortion in the same category as forced sterilization. Can you talk more? Hi, Monica. Well, they're in the same category insofar as elective abortion anyway insofar as both are that neither is aimed at the health of the patient. And so abortion, of course brings other ethical problems, namely the question of unjustified killing of an innocent human being. But I think it's important to recognize the way that the eugenics movement is made possible by setting aside the norm of the healthy patient as a boundary that doctors are not going to cross or as a good that they're not going to contradict or harm. It's not to say that they're the same, but I think they share that characteristic. I'm just going to add on to that. Do you think there's any difference between those two in the sense of whether the patient has control over their own body? So for example, forced sterilization involves imposing something on the patient that they might not have chosen or have known about, whereas a termination of pregnancy or abortion might be something that the patient chooses. Does that matter? Yeah, that's... Well, I mean, that is true. So you have an added injustice in the case of forced or a different kind of injustice in the case of forced sterilization of violating the authority of the patient. I think you have a we have a misunderstanding of authority when we construe it as including the authority to authorize or to enact abortion, elective abortion. But those are two... I recognize, yes, that those are those are distinctions between those two practices. The thing I wanted to highlight in this is that what they share is both of them, if doctors are committed to never intentionally damaging or destroying the health, the bodily health of a patient, they won't do either. Thank you. There was another interesting comment by Harold Pollock that I would invite you to respond to. He says, I don't see why visions of clinical care that give primacy to patients preferences and values rather than to clinicians need be any more detest your instrumental. I don't think, Harold, I miss you, first of all. I don't think it's crucial that we not construe this as an either or. The idea of patients values versus physicians values is itself only intelligible within the provider of services model. The what I'm suggesting that medicine is for is the pursuit of the patient's health, which is a value in itself and the doctor pursues it only in a way that respects the patient's authority to decline anything the doctor proposes. So that needs to be said. I'm not suggesting doctors can run roughshod over what patients desire but the good that they're both after insofar as the patient's seeking medicine, insofar as the clinician is practicing medicine is the patient's health. When patients want something else other than health, then physicians as physicians I think have sufficient reason to say that's not what I do. Insofar as I'm a physician, I'm not a provider of services to pursue various goods one might want but I'm a person committed to healing. Thank you. There were a couple of questions that related to my talk. One was that how do you define and measure spiritual well-being and I realized that a challenge with this work as in any other kind of socio-psychological work is defining these kind of squishy concepts but I would argue depression and anxiety are squishy too. Spiritual well-being is often defined by questions like, for example, I feel at peace or my life has meaning and I think it defines spirituality as a universal aspect of the human experience which may include questions about transcendence peace relationships which are sometimes answered by an organized religion but for some people these questions still persist even if they don't define themselves as religious. So for example the question does my life have meaning has been answered by existentialists and answered by a variety of people, some of whom may be religious and some of whom may not. There were also a couple of questions about whether we could create acceptance and respect for the role of chaplains in clinical situations that was from Dr. Patricia Carey and then a related question from Dina Pistotello, I hope I'm pronouncing that right, about whether improved certain outcomes are enough to convince hospitals to hire more chaplains or they have to be an argument based on that. And I would argue that there are moments in our healthcare setting where even healthcare leaders do value the well-being of patients and families. I know Farr doesn't like that word but I will actually argue that not only do we have an obligation to our patients well-being in which I include health but we actually have an obligation to at least promote the psychological well-being of family members. And I would certainly advocate for a very strong overlap between what I would call well-being and health. And periodically when healthcare leaders become concerned about those things then we need to remind them about the importance of caring for the whole person body, mind and spirit. For some of us that's because of the mission of our healthcare institutions I think particularly those that are religious or spiritual in their orientation but even for many others I think there is an avenue to convince healthcare systems that they ought to be concerned about the outcomes of family members. So I'll move on. I'm going to find a question here for another speaker. September William says, John Lapuma you remain one of my heroes. And her question is that where are clinics in the medical structure for nature therapy? Where might they be embedded? You are muted. Go ahead and unmute. September, thank you so much. That's a really sweet thing to say. I miss you. Where are clinics for nature medicine? I would suggest actually you don't need a separate clinic. The most successful long-term models of including fields that have been considered outside the healthcare system. So I think here the parameters and lines of medicine have been to integrate them within the established disciplines of medicine. So I don't think I've ever had an ethics clinic. It might have seemed like it was an ethics clinic but it was never supposed to be an ethics clinic. I didn't just run ethics clinics and then go write papers. Some of us, we all do ethics inside of our own outpatient worlds and inpatient worlds. So I think nature prescription, the discussion of nature as a therapeutic or preventive modality, the question about a nature deficit or the question about a comfort nature place, can and ought to appear in an examination prompted by whatever the clinical condition is that someone is experiencing whether that's as we just heard anxiety or depression for which there's very good data relatively good data or hypertension cardiovascular disease and diabetes, which generalists of all sorts see. And so I think actually having an outside nature clinic although it would be a lot of fun and I'd love to teach such a thing is more effectively integrated into an assessment, an ordinary assessment of the clinical condition with a simple question of have you been outside today deliberately? And when was the last time that you went outside to play with an animal or to a neighborhood park? Assuming then that there's access to an animal and there are of course cat salons if you don't have one and that the park nearby is safe which I think is a whole other set of questions. Thank you so much for the inquiry. There was an interesting question posed by Angela Marsiglio that I think addresses two of our speakers and so let me ask Dr. Janssen to respond to this first, which is that our last talk by Professor Koch spoke to the non-maleficence versus beneficence distinction. How might surgeons think about surgical complications aimed at prevention? So maybe Dr. Janssen if you could answer first. I'm sorry, could you repeat that? Absolutely. So Dr. Koch's presentation speaks to the non-maleficence versus beneficence distinction. How might surgeons think about surgical complications aimed at prevention? Surgical complications aimed at prevention. I don't have an answer for that question off the top of my head. I'm sorry. Alright, I'm going to go on to Professor Koch and then maybe we'll circle back to you if something starts to coalesce. Yeah, I apologize. So this question of the role of the physician and the patient within these decisions is one of the things obviously that I found very interesting in this project. And speaking with physicians anecdotally there was just a lot of concern and sometimes pan-rigging about this feeling that pre-vivors are going to seek interventions on demand and that because they're coming armed with this additional information perhaps not completely accurate information if it's derived from the internet. These are similar issues that we're seeing already play out in medicine. And so really this is just one of those things that are, it's really just exacerbating kind of an already existing concern about patients demanding certain interventions where physicians might believe that those especially surgeons might believe that those interventions are not indicated or actually might be too risky. And the risk benefit analysis does shift to some extent because the patient is not yet sick. So the surgeon is doing something that intentionally harms the patient without necessarily an actual benefit. We don't know if that patient would have actually even developed, for example in the context of BRCA, we developed breast cancer. And that's one of the reasons that I also want to look at not just physical risks but the psychosocial risks that are involved and that uncertainty that's involved in these decisions because patients who are not able to say get that prophylactic mastectomy or prophylactic ovofractomy or whatever that intervention might be might then be living with this uncertainty throughout their entire lives that might have major impacts on their lives. And so we just really I'm not saying that patients should always be able to get these surgeries on demand. There are definitely times when that would not be indicated but as the standard of care shifts and as the concept of the pre-vibrant becomes more understandable and more well known, I do think that that's going to shift these discussions and the role of both the patient and the doctor within that relationship. Okay, I can speak to that now. Okay, thank you Dr. Koch. So I would say that just in the way that I was discussing beneficence and non-maleficence the non-maleficence principle in my mind it's prior to beneficence so the non-maleficence principle is informing really what is in the best medical interest of said patient doing so with a professional standard. So this principle thus defined would pretty much block any sort of thing that Dr. Koch was just describing where patients are just getting something off of the internet and coming in and sort of demanding something that is not really passing through the filter of non-maleficence. So that's really I think that's the great work that the principle non-maleficence can do it sort of re-establishes in if this is the best way to put it I'm not sure right now but it helps to solidify the physician's authority as a healthcare provider using this professional standard. So it's really directing the beneficence discussion that goes down later so that's the part that I think is so important. If the intervention doesn't pass through the filter of non-maleficence as defined by the professional standard there's really no discussion to be had out there could be other things to talk about but not with respect to that procedure because the physician would in fact by offering a procedure that does not pass through the filter of non-maleficence in fact harming the patient. So that's why I consider it to be possible to be prior to beneficence but yeah. I think that's interesting but it's still it maybe helps frame the conversation about whether for example the risks or harms of say a double mastectomy are worth the possible prevention the possible later prevention of cancer which may or may not have happened. I'm going to ask Farah question and I think I was kind of talking around this but maybe this is crystallizing you know my work obviously encompasses kind of a broad view of the patient and family as it includes things like spiritual care in the healthcare setting. I would regard that as part of health but it seems like you're taking a more narrow definition of health to mean bodily health and I think that it might be more obvious when you contrast it with some kind of highly ethically controversial position like abortion but I wonder if you would say that there is a place within the healthcare setting for example for chaplains or psychologists or others who are attending to what I would call aspects of the patient's well-being but might not be essentially related to their physical health. Yeah that's a great question so if so our primary argument is not that there are no goods other than health and that if a physician were to pursue something that was good that was not health that would be a problem. The primary concern is that physicians not act in a way that contradicts a commitment to the patient's health so that they don't act in a way that intentionally damages or destroys or otherwise destroys the patient's health or undermines the public's trust in the profession and being committed to the patient's health and to say that doctors insofar as they are practitioners of medicine and insofar as they are practitioners of medicine are not obligated to pursue other things particularly and particularly when the pursuit of other things distracts them from or undermines their commitment to health also with that being said you know we care about health not in the abstract presumably as physicians if we care about our patients we care about it in the patient who's in front of us as one feature of their flourishing of their good and you know because it health we're talking about the health of the patient not health in the abstract or not maximizing population health then we have to attend to all those other things that patients bring to their experience of illness to their encounters with their clinicians including what's going on psychologically spiritually, relationally and otherwise and so just in the way that a teacher might you know we think of the good of that a teacher as teacher is pursuing is the formation of knowledge in their students but they might be concerned about how their students are doing at home both because they care about the student per se and because they know that how students doing at home impacts how they're doing and their ability to learn I think similarly doctors are concerned about all that's going on in a patient just in so far as and to the extent that it is important to the patient and particularly in so far as and to the extent it is connected to how they're doing health wise does that answer your question? Yes it does, thank you very much well as we come to the end of our question and answer time are there any final thoughts from the panelists that may be thinking about each other's comments or anything any final thoughts you want to share with the audience alright well as we close out our panel I want to say that I've been instructed that the next panel will begin at 2.50pm it's now time for our lunch break so that's 2.50pm central time so we all have a little bit of extra time on our hands and so I hope you have a good lunch thank you