 It's my pleasure to welcome you to the second panel of this year's McLean Center conference. The panel is entitled Clinical Ethics Decision Making, and it's my honor to introduce this panel's moderator, Dr. John Lantos. John Lantos is Professor of Pediatrics at the University of Missouri, Kansas City, and is the Director of the Children's Mercy Bioethics Center. His work in pediatric biorethics focuses on the ethical dilemmas associated with innovations in clinical care for children and adolescents and in doctor-patient communication about these dilemmas. His NIH and Foundation-funded research encompasses studies about doctor-patient communication, about outcomes for babies born at the borderline of viability, and about ethical issues in comparative effectiveness research and ethical issues in genomics. From 2015 to 2019, Dr. Lantos chaired the working group on ethical, legal, and social issues of the NHGRI-funded Insight Consortium, a group that is investigating scientific, clinical, and ethical issues in genome sequencering for newborns. Dr. Lantos directs the first and only postdoctoral training program in the world that focuses entirely on pediatric biorethics. This program that I just referred to has now enrolled over 300 students from 32 countries around the world. He is the past president of the two leading bioethics organizations in the United States, the American Society of Bioethics and Humanities, the ASVH, and the American Society of Law, Medicine, and Ethics. Dr. Lantos recently edited a book on the ethics of shared decision-making that was published by Oxford University Press this year. It's a pleasure now to introduce you to Dr. John Lantos. Hi everybody. Welcome to the second panel. It's great to be back for the 33rd McLean Conference. It's always wonderful to see everybody, even if only virtually. We have a great panel today. The first panel was amazing. It was wonderful to hear everybody's talk. I still want to hear Marshall's stand-up comedy routine, but maybe we'll get to that over a bunch or something. For this panel, we're going to start with Dr. Andrew Hantel from Harvard. He's a hematologist, oncologist, cancer care delivery researcher whose research focuses on characterizing blood cancer care inequities and developing methods to eliminate them. He attended medical school at Loyola University in Chicago. It is internal medicine, the Hemon Fellowship, and medical ethics fellowship training at University of Chicago. He recently completed a postdoc fellowship in oncology and population science with Dana Farber, who is now instructor of medicine. His current project center on leveraging big data and technology-based interventions to improve participatory equity in blood cancer research. Dr. Hantel. Hey everybody, nice to see you. And thanks again to Mark and everybody for inviting me back. It's good to see so many familiar faces and to hear the wonderful talks this morning. So today I'll be talking to you about cancer clinical trial and biobank disparities and specific work I've been doing or in my area of disease expertise, acute leukemia. Thank you, Andrew. Our next speaker is coming in a pre-recorded talk. So you're not going to be able to ask questions for Professor Lara Roberts, but I do encourage you to put questions in for all the other speakers. Put them in the Q&A, and we will get to those. We're not going to get to questions after each talk, but we'll get to them during the panel discussion at the end. The next talk is called lived experience of ethics, leadership in academic medicine. Dr. Lara Roberts is chairman and professor in the Department of Psychiatry at Stanford. She's a physician scientist in academic medicine and an internationally recognized scholar in bioethics, psychiatry, medicine and medical education. She's gotten grants from the NIH and the Department of Energy, as well as private foundations to do empirical studies on ethical issues in research, clinical care and health policy with a focus on vulnerable populations. So really looking forward to her talk. Hello, my name is Laura Roberts. I'm one of the very first graduates of the fellowship in clinical medical ethics at the University of Chicago's McLean Center, and I'm so delighted to be with you virtually, if not in real time and not in person. Today I wanted to talk, just to introduce the topic of lived experience of ethics and leadership roles in academic medicine. And as everyone in this room knows, we start out as learners. And over time, we move from learners to also be learners and faculty members and mentors, learners, faculty members, department leaders, institutional leaders, national academic leaders, and sometimes societal opinion leaders, as we develop as scholars and scientists, clinicians, educators and citizens. And what happens over time is that we have many different roles and they often overlap in some non-intersecting roles. But in all of these capacities, we influence and lead. And of course, we have even more multiple and overlapping roles when one thinks about our personal lives as a spouse and partner, as a parent. We ourselves are children and we may become grandparents. I hope we all are friends. And we also are whole people living in bodies who need to take care of ourselves and confront our limitations as physical in terms of our physical health, too. So we have a lot of roles and a lot of ways that we influence and live. And when you think about leadership roles, you often think about all these capacities, skills and tools, you know, we multitask, we analyze, we anticipate, we prioritize, we place value on certain things, we take perspectives and share perspectives, we communicate, we delegate, we plan, we balance things, we problem solve, we make decisions, we safeguard risky situations, we strategize, we negotiate, we build teams. Sometimes we sit still and often we do succession planning for the work that we do. So lots and lots of different skills, tools and capacities that come with these leadership roles. And when you think about how you spend your time, oh my gosh, you do a lot of things, you're really busy. You do a lot of things you may not want to do in leadership roles. You do a lot of things that you're not necessarily good at it first. Look at that list that we just went through. You do a lot of things that others cannot do for you. You do a lot of things where you rely on others. You do a lot of things where you must be prepared and yet you don't have much free time or prep time. In leadership roles, you're never really off the clock or off the hook. And as you look at the left-hand side of this slide, I took some screenshots of my schedule. In a recent period of time, I had about 68 hours per week in face-to-face contact hours and activities, a lot of evenings, about 16 hours per week in preparation and behind-the-scenes work. And in my capacity as the chair of the Department of Psychiatry and Behavioral Sciences at Stanford, I spend more than half of my effort in non-departmental activities institutionally and nationally, working with the advisory board for the president, working on funds flow hospital and health system committees, working on committees that deal with mental health and well-being. You're really, really busy. And you do much more than the original job descriptions, other duties as assigned. And I wanted to kind of make a humorous approach to this. I mean, in leadership roles, you are creating fairness where there are a lot of natural asymmetries. And as you see in this slide, there we are, what's 350 pounds divided by two. There are natural asymmetries. And yet in leadership roles, you must address equity and create fairness even when it's challenging. You deal with a lot of conflict. In this slide, it's, again, a humorous take. But I don't care who started it. Something has to be done to bring these two sides together. I think everybody feels challenged when they're in leadership roles with negotiations. And feeling like every conversation they'll be told no or I reference all the time putting on my gladiator outfit to go and work through hard issues in our systems. But that is a big challenge, and there are disappointments. So in leadership roles, you're often dealing with your own sense of disappointment while you're creating a sense of fairness and safety for the people you work with. Here's another one. We don't want you to view this audit committee as being in any way confrontational. And yet here is it's shown visually. You feel like you're alone, and you're dealing with a lot of challenges and system issues that are mounted against you. And then who knew that like Rapunzel, you had to spin gold out of, hey, making money is the new norm in academic medicine. And so juggling that new skill set and finding fairness and finding positive ways to generate resources to protect the academic mission is a big part of what we do. And so making judgments and having an inner compass and finding ways to navigate through complicated times. And I would say having lived through the pandemic and many challenges around health disparities that were all so sensitive and committed to finding your course through those challenges is a big deal. And that's a big part of what leadership is. Now as ethicists, we know that as we accumulate roles, starting from left to right, starting maybe as a learner, student, learner, student resident, resident employee, then we're a resident employee, and then we move into faculty roles where we're mentors and supervisors. We might oversee programs kind of moving left to right. The number of roles that we're accumulating over time is greater and our ethical skill set and repertoire in the background has to grow inevitably with these multiple and overlapping roles. And the tighter these roles are. So as a learner, as a single role or as a resident who is providing care for patients is maybe supervising students, is an employee, you have many different roles and the closer they overlap, the fewer ethical tensions there are. But as these roles become different, differentiated and are more disparate, there are more tensions. There are more ethical tensions as you try to navigate and juggle the different role conflicts. And just to remember, we have so many roles as we talked about before. And so as you think about the ethical requirements of our positions, it's easier at the beginning and as we accumulate more roles, some of which fit very neatly in our ethics skill set and some of which put us way outside of our usual ethics skill set, things become more challenging. So competing priorities, having insufficient time and opportunity to analyze the issues we're facing, narrow decision-making that comes with these different challenges, role conflicts and conflicts of interest. There are a lot of challenges that go with these leadership positions. And let's remember what our overall career development path was. You start out in training, you enter into these faculty roles, you progress academically, but it's not entirely clear where you learn that skill set for managing all of those competing challenges, role conflicts and sometimes, the ability to resolve these ethical tensions. And yet it matters. It matters a lot for the patients that we take care of, for the health systems issues, for the people at different stages of life, different health conditions and to be able to address on a broad scale, health disparities and to build the very, very best systems and practices of clinical care. It's really important that we work on these issues. And just to emphasize that in the context of the pandemic, you know, I think we were all stretched by assuming more roles and activities, doing things that are way outside of our skill set, unprecedented in terms of effort and abilities in standing up responses to this global emergency. And of course, you know, inclusion, equity, belonging and fighting racism, anti-racism efforts have really challenged us all to think differently about our own experiences. No matter what walk of life, what background we've come from, we all bring biases and assumptions that need to be challenged and dismantled as we think about academic leadership roles. So I wanted to give just a few examples from the last week for me. You know, I imagine you have your own list of ethical challenges that have come with your leadership roles, but let me just give a few that came up. I had a VIP referral and I literally have a thousand phone calls to my clinics, my adult clinics, just one part of my clinics every month. And then you get the phone call about the VIP patient who really is an acute need and you know, how do you resolve whether they should jump to the front of the line and how do you hold steady with using clinical criteria and not other kinds of criteria and evaluating access to care for VIP patients. There's a tremendous controversy around hate speech and freedom of speech at Stanford that several of us are working on. And in leadership roles, we're called to bring our opinions and views to these matters. And as a psychiatrist, I'm especially thinking about the impact on morale, that well-being and frankly, the mental health of my colleagues who are receiving death threats for raising challenging issues in the current political milieu. In the last week, I thought a great deal about different manuscripts that came into the journals that I serve as editor for and how to help authors navigate really important questions about authorship. One of the papers that we're looking at, there were concerns raised by some of the participants in the project and how do we adjudicate those? Another example is we were asked by our dean to look at how to allocate some of the funding that came unexpectedly this year to the most sensitive and important issues around diversity, equity and inclusion. This morning, I spent with my, we call them DFA, it's kind of my finance and strategic partner in leading my department. And last year, we had decreased clinical expectations for our faculty and it pivoted to telehealth to really help support our faculty, especially those with young children or other caregiving needs. And so the financial challenges of our department shifted a bit and how do we create equity across a department where some people were serving in the front line, going in every day, suiting up to be able to take care of inpatients, putting themselves physically at risk. And some of my other faculty who worked frankly very, very hard but didn't assume the same level of physical risk and yet were juggling families and family responsibilities and others. So how do we come up with a fair way of providing financial support for our faculty when these things have been so difficult? And then with reopening of our department, thinking about the safety and kind of the implementation of safety precautions in our facility. So for example, is it fair or equitable to ask visitors who accompany our patients their vaccine status? Is it fair for us to insist that our staff and trainees and faculty put themselves in a situation where patients aren't asked to have vaccines as part of a prerequisite for care? And what if you sit in a very small room doing psychotherapy or diagnostic evaluation for a full hour where there are these kinds of concerns? So how do we create fairness and safety for our faculty in those situations? Philanthropy is another example where how do you create a sense of mutualism and excitement around shared goals with potential donors and make sure that there isn't an appropriate quid pro quo that goes with that. So there are a lot of example, I could go on. There are so many examples where things are ethically laden in these administrative roles that we serve. So I would say that trust and values informed decision-making efforts to engage in inclusion and belonging efforts and being a very careful self-observer and serving to support your own wellbeing are probably the four things that I would emphasize as most important in leadership roles and these aren't always easy. You know, creating a sense of trust means that you have to clearly articulate the reasoning behind high stakes decisions. You have to lead by example and live within those same constraints yourself. And then you need to make sure that there's congruence between what you say and what you do and your policies and what you implement in whatever environment you're responsible for. Values informed decision-making is really critical and especially making explicit what those values are. We face so many hard choices all the time. And so if there are people who are disappointed or who feel unfairly treated in some of those decisions, at least helping make explicit what the values are and then giving people an opportunity to raise concerns if there's an incongruence with those values. Inclusion and belonging I think is probably one of the more subtle but vital skills and capacities that we as ethicists can bring to our administrative and leadership roles by making sure that decisions that have impact beyond the immediate decision-makers to include the stakeholders and those who are most deeply affected by those decisions is really critical and creating a sense of belonging, valuing of individuals, a valuing of different points of view and perspectives even if they cannot always be adhered to or even if a perfect compromise isn't possible, making sure that people know that they're valued and belong and that you've listened to them and that you'll do your best to include those perspectives in the decisions that come along in the future. And then self-observation and well-being. You know, we're not all of us good at everything. And so learning to understand what your limits are, where you have to build a team, where you get cranky or narrow or where you might have a vulnerability to a bias that might shape your communication, your valuing and your behavior and your decisions I think is really important. And then, you know, we are not our best selves if we're exhausted and, you know, not taking care of ourselves, taking care of our sleep and our own health. If we are really depleted, you know, we're not going to be the best ethical decision-making, decision-makers. So just a few last thoughts, all the thoughts of a turtle or a turtle. I love this quote from Ralph Waldo Emerson. I would say that we could all keep this in mind and that we are all working from our own life experience and as leaders that's where we need to stretch, we need to honor and understand that others are going to come from their own perspective and that it's up to us, not them, us, to try and stretch to really appreciate what they've lived through and how that might be influencing their needs and concerns in the academic environments that we serve in. I've already emphasized how important it is to take care of yourselves and ourselves in order to be really fulfilled and to be our best selves as we're making hard decisions in all of these roles, whether it's a societal opinion leader, national academic leader, institutional leader, departmental leader, faculty member and mentor, learner, scholar, scientist, clinician, educator, and citizen or loved one who is part of a family or part of a community, really important to be taking care of ourselves, not selfishly, not prioritizing ourselves over others, but actually helping ourselves be our best thinkers and analyzers and open-hearted and open-minded as we make the decisions we have in these administrative and leadership roles. So I'll close there with really trying to emphasize trust, values and form decision-making, efforts to engage in inclusion and belonging and to really value self-observation and well-being. And then just to make a shout out, give a shout out to Mark Siegler, who is awesome and has been a wonderful mentor to me and from whom I feel I learned many of these core ideas and concepts that I've tried to apply in my many, many different leadership roles. And I thank you very, very much for the opportunity to speak with you today. Hi, the next talk is my talk on ethics of shared decision-making. Once again, I wanna thank Mark and my center for having me and talk about what a privilege it is and honor and fun to be here. So this project, this talk, I have no disclosures, let's talk about shared decision-making and clinical medical ethics grew out of a conference that we did about five years ago in Kansas City. Conference focused on shared decision-making and pediatrics, but then Oxford approached us about turning it into a book. And we brought in a few scholars who were working on shared decision-making in other contexts and led to this publication which came out this year. And as I put, I was editing it. So as I was putting the presentation together, realized that through these talks and through the work that a lot of the people who came to speak, including a couple of faculty from the McLean Center who's work I'll summarize soon, as I started putting these talks together and organizing them for this volume of collected essays, I realized that we were sort of telling a story that was a little different than some of the stories that have been told about shared decision-making in the past, so what I wanna do today is try to take you through that story. Story begins as many stories in clinical medical ethics do with a landmark paper by Mark Siegler, his paper on the doctor-patient accommodation in which he talked about how the goal was to develop a bilateral model of decision-making, moral and technical arrangements of medical encounter to determine mutually, voluntarily and autonomously by both the patient and doctor. This was published in the 1980s. It became part of the, or the 1970s, became part of the basis for the president's commission report on shared decision-making. The bilateral accommodation model would overcome, according to Mark, the unilateral paternalistic position-driven model and the patient-dominated autonomy-libertarian model of medicine, as in so many things, Mark, was ahead of his time sort of defining a field of research that others would then go on to develop and pick up on. He noted in that paper that there are already empirical studies about shared decision-making that showed that this form of compromise between paternalism and autonomy led to patients having greater trust and confidence in their doctor, improved adherence to treatment plans that were developed mutually, much greater patient satisfaction, more appropriate financial decisions since those were an important part of any shared decision-making process. And better clinical outcomes in a variety of diseases, particularly chronic diseases, much more than in the acute diseases. So this paper really sort of laid out a challenge for people who wanted to think about how to carry this forward because it turns out the process of shared decision-making, process of doctor-patient accommodation, the process of finding that sweet spot between the paternalistic model and the autonomy-driven model is not at all straightforward and it gets more complicated. The more complicated the decision is and it gets even more complicated in pediatrics where the shared decision is often between doctors and parents and sometimes include patients and they're developing autonomy and decision-making capacity. One of the problems that Chris Futner and colleagues talk about in the book is a common flaw in the model of shared decision-making in that it views each decision as sort of independent. There's a problem, there's a process of shared decision-making illustrated by the question mark here and the idea is that there's a finite number of solutions, A, B, and C in this graph and the goal of the shared decision-making model is to work together to figure out which solution is the best. This model has led to discussion of say, decision aids and better ways to communicate information by looking ways of thinking about effective forecasting to help patients predict how they might respond if they chose solution A, B, or C. And what Futner and colleagues do in the book in their chapter is talk about how in the real world it's really a many-to-many model because often, especially for people with complex chronic conditions, they don't have one problem, they have many problems all at the same time and so the shared decision-making process has to not just find which solution is best for problem X, Y, or Z, but to figure out how to prioritize X, Y, or Z, which one should be addressed first. And so they argue that most serious medical problems require many decisions, sometimes at the same time, sometimes sequentially, decision-making is recurrent and ongoing. There's most likely a string of decisions, each of which feeds back and affects the calculations that go into the other decisions. And they liken this situation for patients and the patient experience, like somebody cast into a labyrinth, choosing again and again which way to turn and not even being certain, in many cases, which goal they are choosing and at the same time being stuck in a maze where they don't know whether a particular decision will help them get to one goal, another goal, many goals, or find the right balance between best solution for goal A and perhaps a less good solution for goal B. And in examining this for parents facing decisions for their children with complex disease, what future and colleagues realized was that the kind of information we often give is not what's driving the decision, but instead it's parents' sense of duty or fidelity to their child, their own values as part of the overarching framework. They struggle to honor and fulfill their personally identified duties while engaging in doctor-defined shared decision-making about multiple decisions in various stages of evolution. And so they come up with a model that looks more like this, not the one to many, not the many to many, but many at the same time with appraisal for self, appraisal for the patients, figuring out how to balance their responsibilities to self and others, their sense of personal duty, and the operational rules that go into this sort of decision. So as I say, I think this adds to our understanding of what shared decision-making is all about. In the end, Putner argues it comes back to an idea of the decision-maker trying to be true to their own values and their own identity in pediatrics. That means being a good parent and often leads to harsh self-judgements if they don't meet their own standards of what that entails. They give an example of parents who may see no way to both show how much they love their dying child and also to avoid adding to that patient's suffering. Obviously this model could be extrapolated to any situation, not just parent-child with surrogate decision-making. Doctor in this elaboration, not so much Putner's, but in research that's ongoing about what actually happens in shared decision-making, the doctor has to decide when to defer to patients and when to exercise their own practical wisdom. One of the other chapters in the book was written by Dan Bradney, who presented some of this work at a prior McLean conference. In this chapter, he gives his quick argument for medical paternalism that goes like this. One's goal is the best overall outcome for the patient. One's goal is a doctor determining what's likely to be the best, requires an exercise in practical wisdom. I, as the physician, need to decide what I think is best. This requires a person who possesses practical wisdom and often at the bedside, that person might be the physician and by this logic model, the physician should be the one to make the decision. On the other hand, in shared decision-making, the most important task may be goal specification and this is primarily the problems of the patient. And the clinician's goal is to facilitate the patient's understanding of her values and goals in order to decide whether the physician's practical wisdom-guided recommendation is the best for her in that particular situation. But that question of which goal ought to be sought is one for the patient to make. Now, the good doctor in practical wisdom could be thought of the good doctor trying to figure out where this sweet spot is in shared decision-making. Doctors are usually less wise about the patient's goals, but they're sometimes wiser about those goals than is the patient. And the good doctor is wise enough to know when she is wiser about the goals than is the patient that is deciding how directive to be in the process of shared decision-making. Not going all the way back to the old paternalism model, not going all the way towards the autonomy model, but deciding where, on that spectrum, they want to land in terms of giving advice, making recommendations, or deferring to the patient. In looking at this, Brittany raises the question of when it's appropriate to challenge the patient's values and suggests that there should be situations, there will be situations in which the physician should challenge and even sometimes forcefully challenge the patient's values when facing a decision like this. Following up on this paper by Brittany is a paper by Johnna Clark and colleagues. Johnna Clark is a pediatric intensivist at Seattle Children's Hospital. And in this paper, they come up with a concept that they call titrating directiveness. Depending on the clinical circumstances, the physician has to decide what degree of directiveness to offer, and that could go from outlining a suitable array of potential choices to suggesting a particular course of action to making a strong recommendation or to doing what our colleague Bill Meadow used to call the broad shoulders responsibility, broad shoulders approach, bearing full responsibility for a clinical decision. In their paper, they give examples of the kind of language doctors may use for, say, low directiveness, given how serious this disease is. I've seen families make different choices based on what is most important to them. Some families tell me X, others say Y. I can better understand how to help you with this decision if you tell me more what life has been like for you, for your child, and for your family, a sort of open-ended approach with low levels of directiveness. A medium level might be considering what you have told me about wanting to stay home as much as possible. It may make sense to put something in place called an out of hospital, do not resuscitate order. Let's talk about that and see what you think. It's making a suggestion, but then soliciting feedback. Degree of directiveness. Hi, you asked me before to tell you when I thought we were no longer helping or with our interventions. Do you still want my guidance regarding this? Because I think at this point, more radiation is only likely to cause pain and discomfort and that we should stop. But tell me if you have questions about that or if that seems like the wrong decision to you. A pretty forceful recommendation for a particular course of action or the highest near complete directiveness along this titrating directiveness scale. All of the teams have talked and we all agree that another operation at this point would likely only cause harm. I know this isn't what you were hoping to hear, but I want to talk about the medical interventions that we should continue in the absence of that operation. This notion of titrating directiveness I think is very helpful for clinicians as they think about the microethics of conversations with families and whether there are situations where they ought to hold back on making a recommendation or embrace the idea that it's time for them to titrate more towards a high level of directiveness. Clark and colleagues end up with this beautifully complex, even more complex than Futner's conceptual model of the various factors that go into evaluating the appropriate degree of directiveness. Finally in the book, Sabrina Darrington, a pick you doc who used to be at Bory in Chicago recently moved to Children's Hospital of Los Angeles to run their bioethics program, talks about, and Aaron can't talk about the cultural considerations. And they give a case as an example, child they call Mateo, parents from Mexico. He's a three year old boy. He's at relapse leukemia, post transplant. He developed severe graft versus host disease and he requires heavy sedation and massive doses of opioids. The parents are in their 20s. They speak Spanish, the pick you staff found it difficult to form a connection not primarily because of the language barrier but because they had a perception that neither parent was very engaged with Mateo. The mother would always be at the bedside but would often be in the back of the room sleeping or using her cell phone. The father when he was present was usually just watching sports on TV. Neither parent asked many questions or seemed overly concerned by the increasingly pessimistic medical updates provided by the physicians. Finally, after exhausting all options and given his persistent suffering, the doctors felt that the most appropriate course was to withdraw life-sustaining therapies. Further, they felt Mateo's parents were unlikely to engage in a shared decision-making process and so chose to provide a high degree of directiveness to provide a strong unified recommendation to allow the parents to acquiesce via absence of dissent. And then it surprised everybody except the Spanish-speaking chaplain when the parents pushed back strongly against this, spoke of their love for their son and not wanting to give up. And the medical team acknowledged this, backed off on their recommendation and agreed to provide a tracheostomy and long-term mechanical ventilation. Parents agreed to this. It was done and Mateo eventually recovered from his craft versus host disease. And in this paper, during to them, the cat talked about the stereotypes. Some of the stuff Marshall talked about in the first panel and how we need to be aware of the way those shape our perceptions of what parents may want or how capable they might be to engage in a process of shared decision-making. They recommend that they take a culturally specific approach, avoid self-referentialism, avoid homogenization thinking you know because you understand a culture. Practice cultural humility cultivates self-awareness and acknowledge the moral relevance of culture. So I think what this book adds is a story that we can tell about how shared decision-making has evolved, the doctor-patient accommodation as a precursor to shared decision-making, a greater understanding of the complexity of the many-to-many model of shared decision-making. Understanding that there is a role for the doctor's practical wisdom, which leads us to thinking hard about how to titrate directiveness while we appreciate the role, the complex role of culture. So we try to help families make the right decision. So thank you very much. It's been, again, a great honor and pleasure to be here. Let me remind everybody to put questions in the Q&A. We don't have time after each talk. I apologize that I won't be able to make it to the panel discussion. Also, when you see questions in the Q&A there, you can vote by giving a thumbs up and that will move the questions up and make them more likely to be discussed in the panel discussion. Our next speaker is Dr. Teresa Williamson, a neurosurgeon who cares for people with all types of spine disorders as well as brain and spinal trauma. She went to Mass General from Duke where she completed her neurosurgery residency in a fellowship as part of Duke's combined neurosurgery and orthopedic surgery complex spine fellowship. Dr. Williamson did her undergraduate work at Yale where she was a Division I soccer player and remained at Yale for medical school of her research interests and how patients and doctors can best communicate and make decisions about surgery. She completed a fellowship at the McLean Center as a member of the faculty of the Harvard Center for Bioethics, welcome Dr. Williamson. Hi, it's nice to see everyone. And I am acknowledging the fact that I'm presenting from Mass General but most of this work has been done at Duke and a lot of it under the mentorship of Dr. Yubel who will be speaking next. So my talk's gonna do a couple of things. I'd love to accomplish these goals which is to convince you that there's a lot of uncertainty in neuro trauma decision making to talk about how that can intersect with ethical dilemmas to talk about the social cultural context for uncertain decisions particularly in neuro trauma and then talk about some new data and questions that it brings up. So to start, this is a patient that we presented to 140 neurosurgeons at the Congress of Neurological Surgeons in 2017. From a neurosurgeon's perspective, looking at this CT scan, you would know that this was an operative subdural hematoma causing compression on the brain and that potentially relieving that pressure could lead to life saving, to it being a life saving procedure. You're also told though that the patient is 77 years old and that they are presenting with a very poor neurologic exam. And so you're doing a quick wait in your head to understand whether or not you could potentially help this person survive in a state that they would find acceptable. On the other side, would you potentially survive them in a state that they wouldn't find acceptable or somewhere in between? So the real question is who and what should predict this decision? Whether or not you're going to move towards more of a comfort guided care and not pursue aggressive intervention or whether or not you're going to go forward with surgery and hopeful that you will get an outcome that would be consistent with the patient's wishes. In this type of decision making, it's rapid. And that's a lot of the reason why we chose to study neurotrauma decision making because it's quick. And in some ways, shared decision making is really a challenge because a patient hasn't really gone through this before. They're not able to communicate for themselves. Their family probably doesn't have a lot of experience in this and prognosis is uncertain. So we asked the attendings what they would do because often their decisions and their recommendations guide a lot of what patients will do. So we said, is it best to take the patient to the operating room to admit them to the intensive care unit for medical management only to initiate comfort measures? And then we asked them what they thought the chances were that they would do things like survive the hospitalization or be able to do activities of daily living at six months. We randomized that study to look at whether or not patients, sorry, whether or not providers received crash calculator estimates. The crash calculator is an outcome-based tool using prior data to show what a likely 14-day mortality and a six-month mortality would be for a patient such as this. In this particular example, the patient's outcome calculator calculated a risk of 65% of 14-day mortality and close to 90% for six months for unfavorable outcome. Half of the participants received that study and the other half did not receive those estimates. These are the results. And really I want you to focus on the left side of this screen. So this is each dot represents a neurosurgeon who responded to this question. The average experience of the neurosurgeons was 13 years. So these are relatively experienced providers giving this information. And you can see the range of prognostic estimates for 30-day survival and six-month functional survival goes anywhere from zero to 90. Some people 100%. And the thing that's even more interesting is that the treatment recommendation in red is yes, I would offer surgery. In black is I wouldn't. And that's relatively scattered across prognosis too. So not only is the prognostication uncertain, so in many ways it's a recommendation of experienced neurosurgeons. We looked at whether or not receiving a crash estimate would help to alleviate some of this decision-making uncertainty. And we did see that receiving a crash estimate statistically borderline significance did change people's estimate of the six-month functional outcome with and then having a poorer prognosis was associated with more likelihood to recommend a non-surgical treatment. So then comes the intersection of the ethical dilemmas. This is, I was as Dr. Lantos mentioned a fellow at the University of Chicago McLean Center last year in surgical ethics and obviously borrowed the slide from a great mentor, Dr. Siegler and others who wrote the book on clinical medical ethics. So when I think about neurotrauma decision-making and I think about the clinical indications, the patient preferences, the quality of life and contextual features, I think that there's a lot of room for ethical issues within neurotrauma decision-making. The probability of success I hope I've demonstrated to you is not clear. What are we gonna do in the case of failure or in the case of an outcome that's unfavorable I think is also often a challenge. Patient preferences are difficult because the patient is incapacitated and many patients may or may not have expressed wishes of what to do. And those wishes could be based on a prognosis that we're not certain of. What we or others would consider quality of life is also a challenge at this point. And I'll talk more about how contextual features such as cultural background and preferences can play into this decision as well. So this is talking about these preferences about quality of life. So what are we actually considering a good quality of life this is a poll of neurosurgeons and it's barred from Scott Halperin's work on states compared to death. So what providers neurosurgeons in this case felt was a comparable state to death. So you can see having loss of control of bowel and bladder most people say that's better than death having a breathing machine many say that it's worse than death and that sort of the biggest one compared to can't get out of bed, confused all the time, rely on a feeding tube, 24 hour care and a nursing home. So these are some of the things that we as neurosurgeons are bringing into this calculation. The next part of the study was looking at whether or not we in these decisions are feeling uncertain about them. So do we feel like we recommended surgery but shouldn't have or didn't recommend surgery when we should have and 50% of neurosurgeons are sort of confessing or talking about the fact that they're not certain about these decisions that they're making. So how do we weigh these decisions in clinical practice? It can be a real challenge. We asked the research question of the big data of what predicts withdrawal of care and severe traumatic brain injury or withdrawal of life sustaining support. We hypothesized that the clinical features like those on the crash calculator would be most associated with withdrawal of life sustaining support. We looked at a big database called the Trauma Quality Improvement Project and picked out all patients with severe traumatic brain injury. There's actually a variable in that database for withdrawal of life saving support and you can dichotomize to yes or no whether or not that occurred after a severe traumatic brain injury. We looked at clinical predictors of this as well as demographic factors. The Trauma Quality Improvement Project represents the entire nation but is not entirely representative in the sense that it is elective to join this collaborative. So this is just a breakdown of our data. We had 47,000 patients included in the study, 37,000 or so that had a severe TBI and of those about 8,000 with the withdrawal of life supporting treatment as a yes. We looked for factors like I mentioned those clinical ones that we would expect if we had a really sick patient that came in with a severe traumatic brain injury and we felt like the outcome was potentially going to be unfavorable, we expected that that would be the type of patient in which withdrawal of life saving support was what we offered or what the patient ultimately decided. So things like functionally dependent health status, dementia, CVA, chronic kidney failure and disseminated cancer were associated with withdrawal but then some things that really surprised us were as well. For example, race with black patients being significantly less likely to favor no withdrawal, sorry to favor withdrawal. So black patients being way less likely to have withdrawal as well as changes based on payment status such as Medicare patients to be more likely to have withdrawal versus private patients. And that was even after controlling for interactions with age. So these are some of the social cultural context that comes into these uncertain decisions. We found in this trauma quality improvement project that socioeconomic factors are associated with withdrawal. So is Medicare and self-pay and the patients of black and other race were less likely than white patients to have withdrawal of life savings treatment. One of the invited commentaries from this article talked about the use of palliative care. So when decision making is uncertain bringing in experts in communication in order to better improve the outcome and hopefully the goal concordance of the outcome. And I think Dr. Mosenthal's quote that's really key to me is this recommendation occurs if death is certain impending brain death in terms of talking about the withdrawal of life support. But what if death is uncertain or the expected cognitive and functional survival is not acceptable to the patient herein lies the challenge. So I thought it was a really fantastic idea to think about how we could use palliative care to better serve goal concordance outcomes for patients of all backgrounds after neuro trauma. So we looked at in the national inpatient sample who's actually getting palliative care and what the trends are after severe TBI. We found that after 2008 which is probably predominantly due to coding there was a significant uptick in the use of palliative care consultations. But even after that there's just a steady increase in the number of palliative care consultations after TBI probably related to the rise in data that that is associated with better outcomes. But what you can see is that black patients are significantly less likely to have palliative care consultations after neuro trauma compared to white. It's important because when you look at the adjusted relative risk of getting an invasive treatment after a neuro trauma like a peg tube black patients are more likely to get them. But if they do get a palliative care consultation they're about the same maybe still slightly more likely to get a peg tube but their risk and usage of peg tubes does go down after having a palliative care consultations suggesting that bringing in an expert for communication in these difficult times may lead to a different outcome at least in the use of invasive procedures. So now there's a whole new set of data and outlines and guidelines and in some ways a new set of problems. So because of all this uncertainty the neurologists and neurosurgeons together with a lot of rehabilitation physicians put together practice guidelines for disorders of consciousness. And this is just an excerpt from some of these guidelines. And I think one of the main challenges with them is that they were pointing out this issue with uncertainty. They pointed out the there's a lot of data now showing that physicians are uncertain about prognosis and that sometimes patients that we even think are gonna do really, really poorly end up doing well at a year. So they made the following recommendations when discussing prognosis with caregivers of patients with a disorder of consciousness during the first 28 days post-injury clinicians must avoid statements that suggest these patients have a universally poor prognosis which makes sense given that we're not sure. Clinicians should counsel families diagnosed within five months of injury and traumatic etiology are associated with more favorable outcomes. And then I think this last one when patients enter a chronic phase three months after TBI until 12 months prognostic counseling should be provided that emphasizes the likelihood of permanent severe disability and the need for long-term assistive care. I think the difficulty with this is it really delays prognosis and delay certainty. And so while it is a much more humble approach and probably a much more appropriate approach based on what we know from the data it still leaves patients and their families in a long period of time of uncertainty trying to decide throughout that time what to do in terms of procedures or not. In some recent literature this coming out of Georgetown School of Law talks about the idea that uncertainty begets disparity. So I showed you that there's certainly different outcomes in terms of withdrawal of life sustaining treatment after TBI for black patients compared to white and for Hispanic patients compared to white and that there's a different utilization of invasive procedures such as peg tube in the days to follow. And that that can be made different or sometimes the outcome can be different with the usage of palliative care. But when we keep things uncertain it allows for biases on physician diagnosis and therapeutic assessments and uncertainty gap can occur when communication between unlike groups is strained by complex conversations. So the more uncertainty we have in some ways the more we're allowing for these biases to take place. And then patients exposed to distrust physicians may be even more uncertain about the value of a medical intervention and or the likelihood in this case to want to withdraw an intervention to favor a more comfort based approach if they feel uncertain or they sense uncertainty on the sense on the behalf of the provider. So I think I suggest some interim solutions which the first one hopefully is obvious that we need better data in terms of outcomes for neuro trauma because the better the data that we have the more we'll be able to give families information that they can actually use. Communication can be really helpful and figuring out ways to communicate uncertainty including bringing in diverse opinions those that see patients on the other side of things like a rehabilitation physician which can be a challenge in a short term in an ER period but potentially using some form of group think to get a more diverse set of opinions and then bringing in early palliative care or communication experts. Talking with certainty where it does exist I think is really important even if it's just a day to day delivery of some type of certain news and we're gonna see this tomorrow and then having humility where it doesn't because I think we've gotten ourselves into a lot of trouble with uncertainty and probably have done some things that have helped to underlie that mistrust of physicians in these types of decisions. Having patient and community advocates I think is extremely important and understanding how different people's cultural backgrounds may affect whether or not they are how they express their goals of care and how they deal with uncertain decisions. I'll end with a quote that I wrote an article in response to this type of situation and this was an example in which I was brought in mainly a cultural interpreter to talk to a black family about considering comfort-based approach when the prognosis was extremely poor and in many ways was able to form a bond with this family that I know can be really challenging regardless of your own background. And what I said is it's important to note that the goal is not to have more black families withdrawal life supporting treatment but rather to determine what quality of life means for patient and to pursue it. If failures of trust, planning and communication hinder the process we must address the barriers. Increasing trust is challenging but it may start with the movements like we're seeing on the news these days. So I'll end by thanking the team at Duke predominantly and now excited to work on the team at Mass General and the Harvard Center for Bioethics. Dr. Ubel, who's been an awesome mentor to me and is speaking next and everyone else in the neurosurgery, palliative care and care departments there. Thanks. Thank you. And without further ado we'll move on to Dr. Peter Ubel who's the Imagine Dynastee, McCullough Horan University Professor of Business, Public Policy and Medicine at Duke Physician and Behavioral Scientist. He uses decision psychology, behavioral economics to explore topics like informed consent, shared decision making and cost containment. He has over 300 papers he's written for the time of New York Times, Los Angeles Times, Atlantic, New Yorker and as a regular contributor at Forbes he's written a number of wonderful books including Pricing Life, Free Market Madness, Critical Decisions and Sick to Debt. Welcome Peter. Thanks John. You can all probably see why I'm heartbroken that Teresa left Duke and shattered that it was for such a second rate institution. I mean if she gone to Chicago that would have been different. I am going to present work today that from another one of my mentees that we've collaborated on is Carolyn Sloan, a general internist who hasn't left Duke so that was a more successful optimized standpoint. And this is what we've done looking at, I think in a topic that is only recently beginning kind of attention it deserves for informed decision making that is in factoring patient out-of-pocket costs into decision making. You know you're about to prescribe an expensive medicine to treat your patient. She asked how much it will cost. That's kind of relevant to the decision. Are you able to answer that question? And what if she had her insurance information handy and that's the artificial circumstance we're going to set up here for a survey that we conducted and just to test whether if given adequate information physicians are able to answer this kind of a question from a patient. So in the United States health insurance plans often have very complicated cost sharing mechanisms and I talk about cost sharing I'm not talking about the premiums that people pay that's an out-of-pocket cost but that's a premium. I'm talking about other out-of-pocket costs that people face, things like deductibles, the amount they spend before insurance kicks in, co-pays, co-insurance, tiering of medications and services, things like that and then finally an out-of-pocket maximum. We're gonna look at how well physicians seem to be able to understand a few of these concepts in the survey that I'm about to present to you. This is a survey we sent out to 900 physicians, 300 dermatologists, 300 gastroenterologists, 300 primary care internists. We got about a 50% response rate on the survey and this was the scenario we set up. Imagine you're about to prescribe a medicine I will not even try to pronounce to your patient. One month's supply of that medicine costs $1,000. She asks how much she's gonna have to pay out-of-pocket for that medicine. Luckily, because this is a fake survey, you have access to your private insurance information. This is a tier four drug and her insurance runs from January to December. So that's the scenario we set up and then we show this person's insurance information super small font, don't look at it right now because I'll show it to you in a more readable form in just a second and then we start asking them questions about this but when all of them saying, we want your best guess of what the cost will be. So here is the important information. We have premium, we put it up there even though that's not gonna be relevant to the cost we ask about. We talk about there being a $2,000 deductible, a $6,000 out-of-pocket maximum and then you'll see the tier four drug which is what these expensive drugs are. There's a 50% coinsurance so that would be half of the price of the drug is on the patient depending on the month of the year as we're about to see. So the first question we ask them, it's we say it's January 3rd. So she wants to know how much she's gonna have to pay for the drug this month. The idea here being you haven't paid off your deductible yet and so all $1,000 of this drug will be the patient's responsibility so that would be the correct answer and it's a question that credits to try to see if they understand deductibles and if they can take that into account. Another question, now suppose she sees you again in March, she's had one clinic visit since then taken two months of the drug. What was she pay out of the drug, out-of-pocket for this drug this month? So here, she'll already have paid off her deductible by now because she said two months of the drug that's already the 2,000 plus that a couple co-pays. She's more than made up the deductible. So now she's got this 50% co-insurance rate so the correct answer is $500. This is a math quiz but based on American insurance so it's not just a math quiz, it's a insurance quiz. Next question would give people. She also takes three other drugs all tier one. What will be the sum of her out-of-pocket costs for just those three drugs in March? Again, she's paid off the deductible these drugs are tier one, so they're $20 each. So the correct answer would be $60 for that. And then finally, now suppose it's December, she's taken 11 months of the drug. How much will she pay out-of-pocket for it this month? This is a test of really whether they understand the out-of-pocket maximum which means once you've spent that much money out-of-pocket, you don't pay anymore. And with 11 months of this drug, when you put together the deductibles plus all those co-insurances, that will have been met. And so this will be $0 for the month. So those are the four main questions, quiz questions and the correct answers. We asked people a bunch of attitudinal questions too. A lot to read on this slide so let me focus you in on a few of those questions. In general, our respondents believe that there was an obligation to initiate discussions about out-of-pocket costs. These conversations happen frequently in clinic and they're important to many patients. And so physicians recognize this now. But they also acknowledge that there's a lot of barriers that takes time and they don't have a lot of time. It's hard to advise people adequately about them if they don't know the answer to the questions. And so there's an obligation to have this conversation and yet we're having this conversation without great information and even great understanding. But on top of that, there's significant, there's a lot of discomfort holding these conversations, partly because I think of information challenges. I think also out of a concern that you're gonna be, you're raising questions about patients, whether you are assuming that they have a lot of money or not much money and so you might be worried that whether patients will take it as well intentioned or not. But still there's a general belief that patients expect to the physician to help them solve these cost-related issues and their spectrioners, et cetera. So okay, that's the attitudes that the physicians bring to the table here. This is the ability to answer our four questions correctly that they bring to the table. Yeah, most people got at least one question correct but only 21% of people answered all four questions correctly and you'll see that only 50% answered at least three of the questions correctly. So there were a lot of people who had a hard time answering a lot of these questions. And here, busy slide, but we're looking at the different colored bars for primary care doctors, gastroenterologists, rheumatologists, basically no substantial significant consistent differences by specialty, everyone's equally confused. And you can see that the ductibles were hard to understand. Co-insurance might have been harder, copays out of pocket, but they're all kind of in this 50 to 60% difficult range. And so there's a lot of challenges across the board by specialty, across specialties and across these different kinds of questions. There were no clear predictors of poor performance on our perhaps unfair quiz, specialty didn't predict answers, number of answers correct, nor did years of experience, nor did whether your patients received, you had a lot of Medicare patients or versus privately insured patients and none of your attitudes towards cross conversations predicted your performance on our little quiz. So the bottom line here, fairly straightforward is physicians can't accurately predict their insured patients out of pocket costs, even in this artificial setting where we give them all the information they need to estimate those costs, which is better than the typical situation in clinic where you don't have that information available. Forward. If someone can forward the slide because my app stopped working. Symmetrical implications. Clinicians can't help patients make informed decisions without timely, accurate information about out of pocket costs. This is one of the things I think that the field of clinical ethics has done really for the practice of medicine is help people recognize that patients deserve information about the pros and cons, the costs and benefits of their treatment alternatives before they decide whether to receive those alternatives. Out of pocket costs can substantially burden people. They can force people to decide between mortgage payments and medications. And if we don't talk about costs with patients, they can't factor them into the decisions. We're not really providing adequate informed consent. And so you need timely and accurate information to do that. Such information could alter treatment choices. But also, even if you stay with the same choice, often recognizing that patients face high out of pocket costs will help you and them seek out financial assistance or more affordable versions of the same treatment in a more timely manner just before people are exposed to those high out of pocket costs. I think American healthcare insurance is too complicated. I think we need to simplify the design of insurance so that, I mean, if physicians can't figure this stuff out, how do you expect most patients to figure it out? I think we also need to limit out of pocket costs. I think the research I've looked at shows that being faced with a modest out of pocket costs has about the same effect on behavior as being faced with high out of pocket costs. So there's no reason to just remind that a higher out of pocket costs don't do anything other than burden people. They're a leading cause of non-adherence and a financial distress. So I just don't think that really it's a moral society that would allow people to face high out of pocket costs for healthcare that they need. I think it should be easier for patients and their clinicians to determine what those out of pocket costs are again, in a timely manner. And there's been some progress in that. CMS now has mandated that all drug plans develop real-time benefit tools. The cool kids call those RTBTs. So they're just starting to get available on an electronic health record where you can click on it and find out what a price is, what a specific patient's out of pocket costs are. We're really early in that happening. I've talked to people at Duke recently who did not even know that that has been in the EHR at Duke now for a handful of months. So even making it available is different than making people know it's available and making it easy for them to use in the flow of clinic. And I wanna thank Caroline for sure. Did a great job leading this project. She's an awesome person. I hope many of you have a chance to meet someday. Two other really excellent people who were research assistants at the time. Lorraine is now a medical student at UNC, Boo. And Sophia Gutteran is at University of Michigan. And I wanna thank you all for the great questions and comments that I know we'll expect in the next session. And now I see the remaining portion of my time to my wonderful colleague from Missouri, Senator Lantos. All right, great talk, Peter. Thank you. It's again, so wonderful to see everybody again. Keep those questions coming into the Q&A or the chat. Type those in, give them a thumbs up if you wanna move them up in the queue. And we will get to those when we get to the panel discussion at the end. Next speaker is also a dear old friend from who I knew when he did his fellowship at the McLean Center, Alvin or Woody Moss as a professor of medicine, sections of nephrology, geriatrics and palliative medicine at West Virginia University. He's written practice guidelines on shared decision-making and the appropriate initiation of and withdrawal from Dialysis co-editor of Oxford's book on palliative care and in nephrology, share of the coalition for supportive care of kidney patients. It's on the editorial board of a number of journals and there's research interests include Dialysis Ethics and improving palliative care for patients with kidney disease. Welcome, Woody. Good afternoon or good morning, I guess, depending upon East Coast time or Central time, but thank you very much, John and thank you to Mark. Mark, I was thinking about the fact that you got me involved in this line of research 32 years ago when you introduced me to Chris Castle, who was then division chief, I think of general internal medicine and geriatrics at the University of Chicago. And Chris at the time was a member of an Institute of Medicine Committee to study the end stage renal disease program. And she arranged for me to be a consultant to that committee and we wrote a chapter for their report which was published by the National Academy of Sciences, Kidney Fair and the federal government. And in that report, we said the nephrologist should develop guidelines for patients for whom the burdens of Dialysis substantially outweigh the benefits. And really I've been involved in that effort ever since as John said in his introduction, I led the effort to develop a clinical practice guideline to figure out which patients should be dialyzed. So, Eric, I'm not seeing my slides, are they up? Okay, so let me just go back, I have no disclosures. One of the things that I get to do is to do workshops for nephrology fellows pretty much all over the country. And for a number of years, I gave the talk at the early program of the American Society of Nephrology in their critical care nephrology early program. When can you say no was the title of my talk? And as a result of that, just this spring as I was doing a workshop at the University of Maryland, one of the nephrology fellows presented this case to me and explained that she had significant moral distress over it and as I give talks to nephrology fellows and nephrologists around the country, moral distress is a pretty regular theme that I hear. So let me present to you, Mr. G, and then we'll use him to sort of look at this whole topic. Mr. G is an 82-year-old man with progressive Lewy body dementia. His past medical history indicates that he has stage four chronic kidney disease. He's followed in nephrology clinic. He has deteriorating mental status and progressive functional decline in the emergency department. He's hypothermic and he has found to have an aspiration pneumonia and septic shock. He has a deep sacral pressure sore with underlying osteomyelitis. With the shock, he becomes oliguric and receives urgent hemodialysis for uremic encephalopathy. His chronic state is that of being bedbound and unable to transfer from bed to chair. His kidney function does not recover. He had, of course, acute kidney injury and chronic kidney disease. And it discharges family once the dialysis to continue. The nephrology fellow reports moral distress over the fact, first of all, that Mr. G was started on dialysis given his overall medical condition and that now they're facing the decision whether or not to continue dialysis. And she's concerned about overtreatment and causing more harm than good. So my objectives are really to talk and spotlight the treatment goals for older patients may differ from those who are younger to use outcomes of dialysis for older patients with dementia as a model for thinking about shared decision making in nephrology and to identify the factors that may lead to overtreatment of older patients with kidney failure and dementia. Some of you may recall this study from the New England Journal of Medicine back in 2009. They looked at over 3,000 nursing home residents who then developed end stage kidney failure and were started on dialysis and at 12 months which is the bottom row there, the majority of patients were dead. Some had lost functional level but none had improved their functional level. So this was a study that sort of was a wake up call to say that older patients with multiple comorbidities and marked dependence and activities of daily living may not do well on dialysis. And then there were a whole series of studies. This is one from the United Kingdom looking at patients 75 and older with stage five chronic kidney disease. That's the worst stage of kidney disease. Notice on the left, if they had low comorbidity there was a survival advantage to those who went on what's called renal replacement therapy or dialysis. But on the other hand, on the right hand figure there was no survival advantage to patients who had high comorbidity scores as Mr. G does. And then what's distressing from those of us who really want to integrate shared decision-making well into decision-making about dialysis is even for patients who had high comorbidity scores and were over the age of 85 and that's that red vertical rectangle there, the majority were either on dialysis or starting dialysis even though they could be predicted to do very poorly with the start of dialysis. And if we think then about what has been found by doing systematic reviews of the medical literature and evidence for practicing evidence-based medicine these are statistically significant independent poor prognosis predictors in patients with kidney disease, age, comorbidities, functional status, nutritional status, frailty and cognitive impairment. And notice Mr. G's predictors are in red and then actually after the nephrology fellow presented the case to me I asked her if she could go back and look at the chart and let me know what Mr. G's serum albumin level was and sure enough it was 2.5 which in most cutoffs is severe malnutrition. So he even sort of if you will had all of the poor prognostic predictors. And much as we were talking about prognostic predictors and their value in making decisions and I think Teresa showed something in the neurosurgery literature this is a validated prognostic predictor that you can access and use online if you're doing ethics consults with patients who are on dialysis or considering dialysis. And we typed in Mr. G's serum albumin the fact that we would not be surprised if he died in the next six months that he was 82 years old, that he had dementia and his predicted six months survival was 20% and his predicted 12 months survival was 2%. And this is not the only prognostic calculator that exists. I also typed Mr. G's data into one that was developed by the French renal information an epidemiology network for patients in their first 90 days of dialysis and he would have been predicted to be among the top 5% in terms of severity of illness and poor prognosis. So the question, I'll ask you a couple of ethical questions. So if you can do dialysis the technological imperative would say if you can do dialysis you must do dialysis but from an ethical perspective we know what's wrong with the technological imperative. And then if we think about the technological imperative Sharon Kaufman, a medical anthropologist at UC San Francisco has written over the years about how the technological imperative has become a moral imperative and that really patients aren't really given a choice about whether or not to start dialysis and nephrologists report that they are influenced by the technological imperative to really feel like they have to offer dialysis to all patients. And so this is what a shared decision making diagram might look like, John, I'm thinking of the one you showed that you said was sort of complicated with perhaps more than one decision at one time among different players. So this is the clinical momentum that can occur in the intensive care unit. Notice you have a patient coming in in respiratory failure with septic shock and very quickly things escalate and without there being a timeout to discuss well, is this likely to benefit the patient? What are the patient's values with regard to this next a crisis that's occurred among other things like Mr. G, the patient might develop acute kidney injury, a dialysis catheter might be put in, dialysis might be started without really any good serious consideration whether dialysis is likely to benefit the patient or not. And of course, if I'm doing these talks in the critical care nephrology early program of the American Society of Nephrology, it's no wonder that so many nephrology fellows come up to talk to me because they say rather than being asked to use their expertise as a nephrologist to make assessments about whether or not dialysis should be done for a patient in the intensive care unit, they feel like they're dialysis technicians and that really the intensivist has already said the nephrologist will come and do dialysis and so really whether or not the patient is likely to benefit or not really isn't the big consideration the nephrologist and the nephrology fellow feels boxed and feels like the family is expecting it and he or she needs to do it. So another factor though that we need to talk about is the biomedicalization of aging which was described also by Sharon Kaufman that this biomedicalization of aging has led to making routine clinical interventions for older and older patients. That's what she calls the routinization of clinical interventions. And what has happened, she describes standard practices replacing choice and the societal expectations about standard medical care have resulted in dialysis for kidney failure and older and older patients and nephrologists really feel like they don't have a choice it's something they're obligated to do too. And so if I'm giving a talk to nephrologists on when can they say no, they find that very empowering to realize that they don't have to do it. And in fact, this fits well with Mark's box one in his four box model with Al Johnson and Bill Winslade, is it medically indicated is the first question. And then Scott Halpern's been already mentioned once today he says Scott had the sounding board with his colleagues from Penn about default options in medicine and how they strongly influence our behavior. And Scott and his colleagues point out that really default options may harm some people. And clearly I would make the case that this default harm Mr. G and patients like Mr. G who have such extremely poor prognoses and who are very unlikely to benefit from intensive interventions in the ICU given his overall condition. So what Scott says is for those who are likely to be harmed by a particular default in this case the biomedicalization of aging and the technological imperative that all patients with kidney failure be started on dialysis he said that people should be forced to consciously and deliberately make a decision about whether or not to start dialysis and really it's important that he say that because just in the last couple of years nephrology researchers have written about what they perceive to be a powerful dialysis default among nephrologists such that they offer dialysis in almost all circumstances and to almost all patients. So that situation sort of set up why there was this perspective in the New England Journal of Medicine last year ensuring choice for people with kidney failure and they indicated several options for patients. There could be incremental dialysis, there could be a time limited trial of dialysis, there could be active medical management without dialysis, there could be palliative dialysis. So I think I'll just go ahead and move on to this. So geriatrics colleague and I wrote an article that was in the Journal of the American Geriatric Society earlier this year, should we recommend dialysis for older patients with kidney failure and dementia? And we said that we question dialysis for these patients because they may not live any longer with dialysis than without it, especially if they have other co-morbidities and patients, older patients with dementia typically do. They have a twofold higher mortality risk than those without dementia starting dialysis. They are less likely to do well on dialysis and more likely to make the decision or the families will make the decision to withdraw from dialysis. The dialysis center is a dementia unfriendly environment and they may not be able to cooperate safely with the dialysis process, not pull out the needles, not fidget around so the needles are dislodged. And what's been noticed also is they're likely to experience a significant decline in cognitive function after dialysis initiation. What's been noted is that executive function seems to deteriorate fairly quickly in patients with dementia who are started on dialysis. Many of you may know that vascular dementia is a common finding in dialysis with patients and that they have often chronic microvascular ischemic changes on their MRIs. The key points that we made in this article were that older patients with kidney failure and dementia may not live any longer with dialysis than without it. The default is to start them on dialysis and then instead of the default it calls for explicit shared decision making with treatment options other than the usual in-center and home dialysis. And on the left lower corner here you can see that the recommendation for an older patient with significant comorbidities would be to consider active medical management about dialysis or palliative dialysis for patients who are thought to have less than a year to live but who maybe want to live to see a granddaughter graduate or get married or the birth of a new grandchild. Or if you're going to start dialysis at the very least start it on a time limited trial basis because the patient could really be predicted to have a likely poor prognosis and although there is some uncertainty starting in a time limited trial to see if the patient tolerates it and if the patient benefits from it. So the bottom line and I did skip over one slide because I wasn't sure about my times. Let me see if I can get back to it. Before I get to the bottom line let me suggest a systematic approach to evaluating the older patient with kidney failure. Look at the patient's age and it's not because I'm ages it's just because age has been found to be an independent predictor of a poor prognosis for patients with kidney failure. What are the patient's comorbidities? How severe are they? Is the patient frail? Fraility in and of itself increases the risk of death within a year more than twofold. What's the patient's functional status? Are they in a nursing home? What's the patient's nutritional status? What do you believe is the patient's overall prognosis? Is dialysis medically indicated? Will the patient be able to tolerate and cooperate with the dialysis process? Is the patient decisionally capable? Will the patient, can the patient really hear the information and participate in shared decision and making an informed decision? What are the patient's values, preferences and goals and how do they play into the decision? If the patient lacks capacity are there advanced directives who's the legally authorized representative? Did the patient specify in advance treatments that were wanted and not wanted? So I suggest all of these things are relevant considerations as you're evaluating whether or not a patient should start dialysis, sorry. So my conclusions are that we should analyze the patient's overall condition taking into account the factors known to influence prognosis prior to offering dialysis to older patients with kidney failure. Certainly in the case of Mr. G, if that process had occurred, if they had looked at all of his comorbid conditions, they maybe should have thought twice before just offering dialysis. Review advanced directives if the patient lacks capacity to see if the patient specified whether he would or would not want dialysis. And my caution is that dialysis should not automatically be offered to older patients with kidney failure, especially if they have underlying significant comorbidities. And as I've talked to all my nephrology colleagues at WVU and also to our intensivist, start dialysis as a time limited trial for those for whom the benefit is uncertain and the patient and legally authorized representative wants to proceed. And nephrologists can say no to dialysis when the burdens are predicted to substantially outweigh the benefits. That's the Hippocratic Maxim. And if there is conflict consider an ethics or a palliative care or supportive care consultation for cases in which dialysis can be predicted to be of limited or no benefit, but the patient and family are requesting it. And then on my last slide, it seemed to me, John, that you're just a little shameless in promoting your book, The Ethics of Shared Decision Making. So I'm going to take a page out of your operating procedure and just mention you did say it in the introduction that we did publish this book last year, Palliative Care and Nephrology by Oxford University Press. And if you're interested in this topic and want to read more, we were gratified that we got international experts to write our chapters. And there's also a pathway available online free for active medical management without dialysis. So if your nephrology colleagues are not sure how to do it, there's a resource for them. So with that, let me conclude my presentation. Hello, I'm William Parker, one of the assistant directors of the McLean Center filling in for Dr. Lantos for the end of this panel. Thank you so much, Dr. Moser, very interesting talk looking forward to the discussion, which will occur immediately after this next and final talk of the lecture from this panel session from Daniel Brodney from the University of Chicago. Daniel Brodney writes and teaches political philosophy, bioethics, philosophy in literature and the philosophy of religion. He's the author of Mark's Attempt to Leave Philosophy and his recent work includes Nostromo and Negative Longing for philosophy and literature, forthcoming and forthcoming is unproductive holism, a less perfect union and concepts in the best side, by at the bedside, variations on the theme of autonomy. Finally, he's also working on changing the question and from the Hastings Center report that's come out from 2019. Professor Brodney received the 2014 William John and Harriet Manchester-Pontrell award for excellence in undergraduate education. Professor Brodney, looking forward to your lecture. Oh, and my audible, good. Thank you all. Thank you for that nice introduction. Well, I really appreciate it and Mark, thank you as always for inviting me. Thank you for Professor Brodney for really interesting, engaging talk. We're gonna be moving towards the panel portion of the discussion. I sort of have picked out one question in the chat or one question I had from everybody. And actually wanted to start with Professor Brodney since we're sort of caught off the presses, your talk. You know, you seem to, the example of the mugger clearly defines coercion as an act that reduces someone's set of choices to fewer choices, all of which are bad. But then you also imply with the loan shark that offers can be coercive by introducing like a very bad choice to the set that the patient might be vulnerable to accept given their clinical state. And so it's your argument that indirect procedural paternalism is a valid protection against those types of bad offer coercive choices. If I understood that correctly. So thanks, Will. No, I think probably what's not as clear as I should be. I don't think there's a long philosophical literature about whether the concept of a coercive offer is actually intelligible. In the loan sharking case, that's not a case of coercion, not every kind of offer, every kind of situation in which people find themselves unable to, in which it's not that they literally can't resist but that they don't resist counts as coercion. Rather, this is a case in which we think people truly do have agency. And we just think that the array of choices that are being offered to them includes a bad choice. And we think we are justified in removing that bad choice from them. Now, in this sense, we think we know better than they do about what their interests involve. This is, as I say, a form of paternalism. And the same way I think that the team actually thinks that it knows better, it knows best what is the proper process for the patient to make the choice. One in which the patient is not tempted to give in to what the family has to say. And my point is that at least I've listened to clinicians talk about these cases for a long time and there is so often a tendency to demonize the family to make it seem as if the family is doing something bad and that's where the term coercion comes in because coercion is generally thought to be a bad thing. And all I'm saying is no, the family's just being a family and that doesn't mean that it isn't right to remove the patient from the family to get on the patient to make the treatment decision. I just wanna call it something different. I don't wanna say that what you're doing is preventing the family from coercing the patient. I want you to say, no, the family is being fine. The family cares about the patient. I mean, loan sharks don't care about the people they're alone to. The family loves this person. The family has a view about what's best for this person. And that may be getting in the way of our picture of what medical decision making is all about, which is this. Despite the occasional nod towards this thing called relational autonomy, it remains at base an old fashioned notion of the person figuring out his or her views of what's to be done and what's best for them, where it's up to them whether they factor in other considerations like their family's needs. And it's really on them. And our job or your job as clinicians is to help them figure out what that is. And to do that, sometimes you need to remove them from the family. And that's fine, but that is, as I say, I think you're saying you know best how to set up a process for them. And it's not that the family's doing anything bad. So I'm not asking the change in clinical practice just as I said at the end, a change in the description of it. So it's almost we don't as physicians have to worry about coercing a patient with these procedural processes because we're not reducing the choice set. We're just trying to make sure that we can make the patient know that why we think that that particular choice is bad, like not taking a blood transfusion. Right, I mean, I'm quite untainted from there. I mean, of course, you guys have power. There's always that asymmetry in the room. And so you have to be careful in how you present things. So as to minimize that sense of asymmetry, as a word to minimize a kind of authority that you have that goes beyond your epistemic authority is knowing about medicine. But good clinicians have always tried to do that and so yes, so the goal is to allow the patient to make his or her own choice. Excellent. I'd say I don't know if any of the other panelists have a comment on that topic or I have a lot more questions. All right, let's see the highest voted one is it's high, but so we'll start with Dr. Handtels, which is for me. So I'm sort of bringing the game like this, but the, you know, I was really struck by the clear disparity in your research of patients who have all enrolled in a clinical trial. So they've kind of gotten access to a clinical trial. We know there's large disparities in even getting access to clinical trials, but there's a racial disparity beyond that point in amongst trial participants who elect to enroll in the Biobank and give their tissues for Biobanking. And my question goes to like, what do you think is driving that disparity? Is it that the patients of color are not being asked to enroll in the Biobank or they're being asked and refused? And if they're refusing, how do you think the historical examples of racist abuse in medical biomedical research like Henrietta Lacks, for example, they play into that? First off, can you hear me? Yes. Wonderful, all right. We are driving through a rainstorm, so I've pulled off to the side of the road. And, you know, I think there is a, right now it's honestly an open question as to what the driver was specifically for this population in terms of, you know, the clinical trial enrollees enrolling onto the Biobank and the disparities they're in. I think there is definite evidence that African-Americans specifically are asked the less often to participate in Biobanks, meaning Biobanks not collected clinical trials, just ones that people can be asked to participate in in cancer, just kind of cancer care in general. Whether or not that extends to people who are, you know, within a clinical trial, we don't have evidence for it, but I suspect that probably carries over. And there is a difference known that when we ask patients to participate in these so-called companion studies where they're giving tissue and samples for, you know, ancillary research questions about, you know, how the cells respond to drugs and all those kind of things, there's evidence that there's definitely increased hesitancy for some diverse groups to enroll onto Biobank storage protocols where you're asking them to give tissue without a specific research question or purpose, but for a, you know, future use for something versus a correlative science study that's really asking a very directed question. So I think there's definitely some hesitancy in there as well, but honestly, you know, given the fact that we saw that it varied a lot by institution and there was kind of that issue of site diversity amongst the trial enrollees that really interacted with how people were enrolled or not enrolled, there is easily and probably most prominently a structural racism issue going on there that's, you know, not allowing people from diverse groups to get into this type of research. And I think it's really disappointing too, because, you know, these are a lot of the studies that really let us know how drugs work or how, you know, other drugs that are in the pipeline might work for future cancer research. And, you know, it means that we're just kind of skewing the whole field to keep kind of finding things that work out for people who are, you know, already overrepresented in trials. So maybe I'll leave it there and see if you have any follow up or answer questions. No, it sounds like you've got your work cut out for you, but an important area of research and stuff so far. So I wanted to ask some questions for Dr. Williamson, who I think had to unfortunately leave us, but since we have Dr. Ubo, Dr. Ubo here, I figured I can still ask them. My first question is about in the JAMA surgery paper, it's somewhat technical, but I think we can broaden it. Provider effects on the withdrawal of life support for traumatic brain injury. You'd imagine based on the early presentation of data, and this somewhat, again, connects to Dr. Moss's work, that provider values struck or values may influence the decision-making process that leads to withdrawal of life support or the initiation of dialysis, right? So from a statistical sense, it seems important to control for that with provider fixed effects or in a multi-level hierarchical model. And then maybe you can just talk more broadly about the role of providers in these decisions because it seems so, so central and probably varies substantially between providers and what, I guess the larger issue is what are we supposed to do in the field of clinical medical ethics about this type of provider variability? Oh, thanks, and Teresa is in the OR right now. That's why she had to leave. That's at least the excuse she gave me. So actually I wanna be clear, I understand because I think of provider as a system where I think of a clinician as an individual. Clinician could be a physician, nurse practitioner, physician assistant. So there are hospital effects you have to worry about and then there's individual clinicians who are working with a family to make a decision. Which of those were you more focusing on? I mean, I guess you probably need a three-level model, right? But I think what was compelling in Dr. Williamson's talk was the neurosurgeons value judgments of these various states of neurocognitive disability. So I'd imagine that they're a very strong provider level of facts that they bring into these shared decision making conversations. Yeah, sorry, sorry, sorry. Clinician level of facts. Yeah, by the way, there's also people who hate using the word provider when you mean clinician. People who get really beside themselves. I don't really understand that. I'm not one of them. I'm not one of them. Yeah, you know, it was interesting when Teresa first talked to me about this topic, what was striking to me about it is there are often trainees playing a really big role making a decision and maybe they'd be calling the attending at home, but they'd be framing the information them in ways and then they'd be interacting with the families. And then if the race of that on-call resident did or didn't match the family, you might have a different dynamic. So all these things really tricky. I cannot remember, this is a, I'm delaying. I can't remember what in particular we adjusted for and I didn't look back on it. I believe that there are hospital level differences that explain part of what's going on, but do not explain it all. And we could not adjust for clinician level variables. Yeah, I mean, it's a very interesting statistical problem, especially when there are these potential per clinician patient interaction effects. And then you have this additional layer of residents and physicians. And so you have mixed membership issues. So yeah, this is an ethics conference, not a statistics conference, but I think the larger issue, which you can sort of turn to Dr. Moss and you can talk about this in the context of initiation for dialysis in patients with dementia or other chronic limiting conditions where our older age is the value set of the physician and how that, what role you think that should or shouldn't play, right? Right, right, right. So Will, that's a good question. So the reason to write a clinical practice guideline is because there's evidence of significant practice variation among clinicians. And that's the reason why back in the late 1990s, there was significant variation in what nephrologists said they would do with regard to starting patients on dialysis. In fact, I did research while I did my fellowship at the McLean Center on that and determined that a third of nephrologists would start a patient in a persistent vegetative state on dialysis. And when we got that information back, we, one of these types of things, so what are they thinking? So at any rate, so yes, there are clearly nephrologist values that lead them that this audience is probably not aware of the fact that two thirds of the nephrologists do not believe that medical management without dialysis is an ethically acceptable option. They believe that older patients with kidney failure should be started on dialysis, two thirds of them. So there's clearly a value difference between nephrologists who really feel like in almost all circumstances, I should be starting this patient on dialysis and patients and families who say, I don't want it. I've lived a good life. My quality of life isn't such that I wanna go through surgery and sit on a dialysis machine for four hours, three times a week. So the point is there are really value differences and that's the reason why it's too bad, John's not here. That's the reason why if we really did shared decision-making right and really paid attention to patient's values, preferences and goals, and also prognostic information and then really got together and reached a common agreement. What Mark talked about is that accommodation, right? That physician, patient, you know, Mark was right. I'm sure Mark's probably listening, you know, what's that go back to the mid 1980s, you know, Mark. So you were prescient on that one, but we're still trying to integrate that into everyday care, especially in the ICU too, I bet will, right? You're still trying to, you know, optimize that so that really good decisions are being made. Yeah, and it's very hard in the ICU and the decision to start acute chemo dialysis for acute renal failure in the ICU is always challenging, right? Because, you know, as that Jackie Gershner's paper so nicely lays out that you presented that there's this sort of clinical momentum and it becomes the default in a way and it gets locked in. I think we could all agree that shared decision-making and for major decisions, like starting human analysis is central, but that sort of gets to Dr. Daruble, your talk about, you know, what MDs are sort of financially motivated to do in these situations, if you're a nephrologist and, you know, you start people on dialysis, that's how you get paid and do clinic visits, that sort of clinical default, the biomedicalization of aging, is in your financial interests. And, you know, that's the classic arrow, medical uncertainty and the wealth economics of labor, it says medical ethics is supposed to be the thing that protects against this asymmetric information between the patient and the physician. So I guess my question, to bring it to an actual question point, is, you know, what do you think from a policy perspective is the lowest hanging fruit in terms of reducing financial toxicity on patients? That physician behavior could change. You know, clearly the results of your survey suggests that there's a lot more education that could be needed, but is there something, some lever that could be sort of immediately pulled, what would that be? Yeah, thanks. Yeah, first off, just to be clear, my study had nothing to do with financial incentives that physicians face. It was just, they were prescribing a medicine and it was the patient who faced the financial thing. Yeah, I don't think education's gonna work. I think what you need to do is make things effortless and efficient, you know, and timely. And so I do really think it's building things into the EHR. I think maybe having some automation of some collection of information prior to the visit about financial concerns that patients already have. And, cause it's, you know, we talk about financial toxicity, like when people face high out of pocket costs, but what's high out of pocket to me might be different than what's high out of pocket to you. And I might think a $40 co-insurance is nothing to somebody, but it might actually make it hard for them to afford groceries that week. So understanding where people are coming from is important. I'd like to make that automated, get that feedback, that information to physicians. So you're not trying to ask intrusive questions about financial status sort of in the patient encounter, or maybe that can't be avoided, but the one question I really wanted you to ask you is when whatever that's showing up in the EHR, you know, about the financial toxicity to the patient is misaligned with the physician's financial incentive, like an oncologist who get paid by market-bound therapy, right? You know, that to me seems sort of like an egregious misalignment of economic incentives. And so how do you, maybe that's specific to that field, but I can see there's other situations where we're sort of relying on the physician's financial incentives to be independent of the harm to the patient. There's a lot of times when, you know, we make more money when the patient gets screwed with the big bill. And how do you deal with that? So awful. I mean, so we should not have incentives that are that screwed up. And so a lot of it, a good design is about good incentives. Like having incentives that are aligned with what we think the moral goals of medicine are. And I would even say like patient out-of-pocket costs, you know, one way of building that is to say, if something's really high value, we should have really low out-of-pocket costs. If it's plus minus where there's some that should get it, okay, out-of-pocket costs can go up. That's a thing called value-based insurance design that I think aligns incentives, the patient's incentives, values. By and bill, I'd love to figure out how to get rid of it. You have to overcome a lot of powerful lobbyists. But you shouldn't have a clinician shouldn't even be tempted to think about their own financial best interest or maybe even keeping on, you know, paying the staff and, you know, or shrinking the number of staff in their clinic because one medicine is better for their bottom line than another. It should all be about what's best for the patients. I think we can all agree and that also agree that we have to be realists about economic incentives, you know, that physicians respond to those and break that taboo in medical ethics about talking about that and being honest, that, you know, we're human beings like make money and we can't be a dirty word even though that taboo is really strong. And yeah, I think the only way to, you know, talk about a problem is to name it, right? All right, so let's go. We have 30 seconds left. There was a really interesting question I think, Dr. about, you know, for that would be best directed at Dr. Williamson. But since we're almost out of time, I'll just see if anybody has any parting thoughts. I thought that was all the talks were great and any other comments on the panel? Nope, thanks for doing such a good job. Look forward to being in person next year. Yes, absolutely, we're all doing that. All right, well, thank you. Thank you so much everyone for participating. And we have lunch break now.