 So, I have the privilege of introducing the one person in the room who needs no introduction, Dr. Mark Siegler. So, as you all know, Mark has been here for 50 years. We're actually celebrating his 50 years. He came here having graduated Princeton. He came here from the University of Chicago for Medical School in September 1963. And 50 years later, he's still as busy as ever and still the social entrepreneur and the hub in a sense for all of us, the center of all of our work. Today, he's going to talk to us about the McLean Center and the birth of clinical medical ethics. So a warm welcome to our friend and colleague, Mark Siegler. I am so glad to be here today and my warm welcome to everybody and my great thanks to our wonderful board and to Barry and Mary Ann McLean, the chairs of the board. I wonder if I could just ask the board members to stand up so we can recognize you. Thank you, you hear me all right in the back? Yeah, good. Here's the outline of my talk. It's in four parts. The first one is very short on the medical ethics renaissance because you've all heard me talk about that. And the final three parts will be on what is clinical medical ethics, the origins of clinical medical ethics and the McLean Center. And then what I take to be some of the signal contributions of the McLean Center to clinical medical ethics. I begin with the medical ethics renaissance post-1945. As you've heard me say often, I think there were three, probably more than three. But these three were particularly important driving forces in the emergence of the field. One was human experimentation with a special prominence of unethical research involving human subjects beginning with the Nazis during World War II. But continuing in America of course with the great article by Beecher in 1966 in the New England Journal on unethical research. The Tuskegee experiments being revealed in 1971 and so on. A very important ongoing area that has driven attention to medical ethics. The second one I would point to is a change in civil and human rights. Certainly in the United States, Canada and Europe. Probably more broadly than even than that. A new understanding of the relationship of individuals to authority figures. I think in the United States it clearly started with the civil rights movement. It probably next involved women's rights in the late 1960s. The student rights movement in Columbia, Berkeley, Paris. And I think medicine was part of that larger social and political evolution which led to the understanding and the widespread acknowledgement that patients had to be better informed and had to be involved in reaching their own decisions. And then of course there's a third one that's with us and all of these are with us as we go forward. And those are the extraordinary, the absolutely incredible technological advances in medicine that cure illness, delay death, assist in reproduction. The last 100 years has been, I use the word renaissance at the beginning, has been one of the great intellectual flourishings in history. You can talk about doubling of life expectancy in 100 years. Reduction of infant mortality. I'll give you one statistic I just heard last week. And that is that 40 years ago, 16% of the US population died before the age of one. 16%. At what age today do you think you have to go to to get 16% of the population dying? What? 16. 61. 61 is the answer. So in 40 years, there's this unbelievable change. I show some of the changes very quickly, the organ transplant revolution, starting in Boston in 1954, between these two twin brothers, identical twin brothers to overcome the immune problem. The development of effective ventilators like in the early 70s. The Bennett volume ventilators, and then of course the IVF and Louise Brown and assisted reproductive technologies. I just talk about this control over birth and death. In any event, that is my point about the medical ethics renaissance. I now want to turn to the second question, and that is what is clinical medical ethics? Let's begin by acknowledging that there are many definitions. But also let's say the following. But hey, we invented it, so we get to define it. And so here goes a try. Clinical medical ethics is a new field aimed at helping patients, families and health professionals reach good clinical decisions, taking into account the medical facts of the situation, the patient's personal preferences and values, as well as the external summarized socioeconomic considerations. And clinical medical ethics examines practical ethical issues that arise in these situations every day, in the office, in the hospital, and in all healthcare institutions. To go on with part of the definition, clinical medical ethics is derived, its foundations are found in medicine, not primarily in philosophy or theology. Further, in 2013, to be a competent practitioner of any discipline within medicine or surgery, or Peds or OB, physicians must know and apply the basic elements of clinical ethics. Gotta know something about truth telling, informed consent, end of life care, confidentiality and privacy, research ethics, and the centrality and importance of the doctor-patient relationship. Clinical medical ethics, as I said earlier, is not a theoretical or armchair exercise. It has to be practiced and applied by clinicians every day in their care of patients. Forgive me for the somewhat lengthy quote from Kierkegaard in which he tries to distinguish theory and practice. He said, let us imagine a ship captain who'd passed every examination with distinction, but he had not as yet been at sea. Imagine him in a storm. He knows everything he ought to do, but he is not known before how terror grips the sailor in the blackness of the night. He's not known the sense of impotence that comes when the captain sees the wheel in his hand become a plaything for the waves. He's not known how the blood rushes to the head when one tries to make calculations at such a moment. In short, he has had no conception of the change that takes place in the knower when he has to apply his theoretical knowledge. That dramatic change. The Spanish perhaps say it a little bit more succinctly, and this is Siegler's translation, as one moves from the stands into the bull ring the appearance of the bull changes. Thank you, Teyad and Caroline for finding the bull picture. Practical every day. And now I turn to part three of the talk, the origins of clinical medical ethics and the McLean Center. I think it's fair to say that the McLean Center is seen as the birthplace of clinical medical ethics, the first ethics program in the world to focus on this new field. About 10 years before we had a McLean Center, I ended up being the medical director of an ICU here at the university, which was our first Miku, one of the first Mikus in Chicago. It was a six-bed unit on W5 in the old hospital. I directed it, I attended for 12 months of the year for the four or five years that I directed it. And that ICU experience raised for me many of the core issues in the field of clinical ethics. I had wonderful teachers and mentors, not just in the medical side, but on the campus side. And the fact that the University of Chicago has this integrated campus in which the medical school and hospital are 50 feet across Ellis Avenue from the rest of the campus was so important. When I started, Jim Gustafson was my primary mentor on the left. Dick McCormick was on campus at the Catholic School of Theology. Leon Kass arrived three or four years later to become the loose professor of the humanities. And then a few years later, Steven Thulman came to the university. It was so important to the ethics program throughout the late 70s and 80s. But I mean, these are people who meant so much to me personally and to the evolution of the field of clinical ethics. It was out of that ICU experience that I wrote my first paper on Pascal's wager in the hanging of crepe. That came directly from the medical ICU. Some of you in the back will not be able to read the second bullet, but it was at Jimmy's, a bar near the University of Chicago campus, which still, by the way, exists, where the residents and I from the MICU would occasionally meet and the residents told me at one of these occasions that they were systematically lying to the family members of patients by telling them that their loved ones in our unit were definitely going to die. And they even had a name for this approach, which they called hanging crepe. That was the background of the paper on Pascal's wager in the hanging of crepe. Many of you have asked me about the origin of the name clinical ethics. The term came from Alvin Feinstein at the annual medical meetings, once again, in a bar. Somehow, I didn't realize that I put these two slides together, how important bars were in the history of clinical ethics. These were the old pre-Casino Atlantic City where the annual academic medical meetings would be held. And it was one of these meetings that Al said to me that I was not, I, pointing to me, and slurring his words a little bit, as I recall. I was not an ethicist like those ivory tower ethicists, but I was rather like he was. He was an epidemiologist, but he considered himself to be a clinical epidemiologist, and he considered me to be a clinical ethicist. And that was around 73 or 74. And the term pretty much stuck. The first use of the name clinical ethics that I can find anywhere is a grant that Anne Dudley and I and Jim Gustafson and Martin Cook submitted to the old department of HEW, Health Education and Welfare. We wrote the grant in 75, submitted in 76. It was called Clinical Ethics and Human Values. It was a three-year teaching and program grant allowing us, and Dudley remembers us, to teach medical students, law students, and divinity students around the same cases. And we did that for three or four years. It was clearly among the earliest, if not the earliest federal grant in the field of medical ethics. That's what Norm Faust said to me recently. In 1978, I wrote an article called A Legacy of Osler Teaching Clinical Ethics at the Bedside, which again, so far as I know, is the first time that the term clinical ethics appeared in the peer-reviewed literature. In 1979, I was asked to start a section of clinical ethics in a journal that used to be called The Archives of Internal Medicine. I think it's now called JAMA Internal Medicine. But that section went on for four or five years. And the opening article that I show you here on clinical ethics and clinical medicine describes some of the early ideas we had about clinical ethics. It was because of these articles and that I'm showing you that a few years later, Al Johnson and Bill Winslade called me to ask if I would join them in a project as the clinician to help write this book on clinical ethics. And I show you that when we talked to the publisher, I had two specifications for the book. One was that it would look like a Bible. And second, that it would fit into a lab coat pocket, which the first edition did. The subsequent editions did not, but that one did. And that was in 1982. In 1982, when I returned from my one and only sabbatical at Charlottesville, we received permission from the dean of the medical school and the president of the university to develop an ethics center. And it was in 1983 that Dorothy Jean McClain, Barry's mom and the McClain family joined in giving us a gift to launch the McClain Center. In 1984, the McClain Center received pilot funding from the Henry J. Kaiser Family Foundation. And then, I think in part because we had gotten that pilot grant from Kaiser, the Andrew W. Mellon Foundation in December 23rd of 1984 sent me the strangest letter I've ever gotten, which was one of these really thin letters which tell you that you've not been accepted to college, you know, one of those. Because Arthur Rubenstein and I had made an appearance at the Mellon Foundation a few months earlier and had been essentially chased out of the office as being inappropriate and we give to colleges and universities, we don't give to medical schools, leave. And so Arthur and I left with our tails between our legs and very disappointed. And so comes this letter on December 23rd of 1984, a very thin letter and I was sure it was the pro forma rejection. I opened it up and in fact there was no letter. It was no letter in this envelope. The only thing in the envelope was a check made out to me personally for $750,000. I, no comment, nothing, check. It took me, since it was a Christmas holidays, it took me about, I called Arthur. Arthur said, Mark, don't spend it. He said, we gotta check this one out. So, I didn't spend it. But because of the holidays it wasn't another week or two that we could sort of pin it down that indeed this was a general grant to the University of Chicago for the development of a center for medical ethics. It was a year or two after that that we received a six year grant, a large one from the Pew Charitable Trusts and again from the Henry J. Kaiser Family Foundation to develop a national faculty training program in clinical medical ethics. And I believe we have four or five of the original faculty trainees, if not more, in the audience today. I turn now to the impact of clinical medical ethics. Until Peter Singer gave his talk this morning on social entrepreneurship, I never considered myself to be one. It's sort of like the person who had been speaking prose all his life who didn't quite realize it. But one of the definitions that Peter gave for social entrepreneurs were developers of innovations that disrupt the status quo and transform the world for the better. I really had not thought of myself as doing that. But I did wanna tell you what I take to be some of the impact of the field of clinical ethics. In the 1970s when I was growing up in medicine there were few organizations, very few, that had ethics committees and codes of ethics. That is no longer the case. It's hard to find a medical organization today without one. As you know, there's a journal of clinical ethics and probably 10 or 12 other ethics journals that publish regularly in the field. But also clinical ethics papers are increasingly published in mainline medical journals, not just in the ethics literature. I think it's fair to say, and this Cornerstone Award that we accepted a few weeks ago at the ASPH meetings, becoming just the fourth institution to ever get one, highlighted it, it's fair to say that clinical ethics has become one of the major components of the American bioethics movement. I believe that it's almost every large hospital in the United States now has an ethics committee or an ethics consultation service to help resolve clinical ethics problems. You can't believe how different that is from 25 years ago, 30 years ago when we started. But I point most importantly to the highlighted bottom bullet that clinical ethics discussions have become a part of everyday clinical discourse that occurs in outpatient and inpatient clinical settings across this country. And that has been perhaps the greatest achievement of the field of clinical ethics. That these discussions are not aberrant or unusual but they're part of the discourse. They don't come up in every patient because every patient doesn't raise profound clinical ethics problems or issues. But when they do come up, they get talked about at the bedside or in the office. I turn out by final part of my talk, which is in a way the most important part and what I take to be some of the central contributions of the McLean Center to the development of this field, this new field of clinical medical ethics. And I will point to seven, as I was working on this list, three or four or five more came to mind. But at least I'll talk about the seven that I point to. And here are the seven. I'm gonna go over each one of these in turn so you don't have to get this list. But I think the greatest contribution was the one I've just been discussing and that is we created and developed and nurtured and grew the field. And that really was an extraordinary contribution to bioethics in this country. The Cornerstone Award that I referred to a few minutes ago is presented to a university, to a program, for quote, outstanding contributions from an institution that has helped shape the direction of the field of bioethics. And that's, and in a very nice presentation in Atlanta a few weeks ago, that's what the people were saying, that we were there and we did that with clinical ethics. I wanna highlight the early associate directors of the McLean Center, Steve Miles, who's I believe in Cambodia or Thailand and couldn't be here today, and John Lantos, John, I know is here, John. I also wanna highlight the four current associate directors, Peter Angelos, Marshall Chin, Laini Ross, and Dan Salmezzi. I wonder if you might just with John stand up and so we can acknowledge you. And of course we have an extraordinary faculty in addition to the associate directors, more than 40 faculty from the biological sciences, social sciences, law school, the Booth School of Business, and the Divinity School. You can't read their names on here, I apologize, but I think one of the contributions of the McLean Center was bringing together this extraordinary group of people, talented, knowledgeable in their own fields. And they're just wonderful. I think another contribution of the McLean Center is something that I call clinical ethics by the book. Current and former McLean faculty and fellows have published thousands of journal articles and when we started to count, we stopped at 155 books. That's a lot of books to have been written by people who have been affiliated with the McLean Center. My own book, which I refer to in that first edition, is now in its seventh edition, but just last week Al Johnson and Bill Winslade and I agreed, at least in principle, that we're gonna do an eighth edition. So the eighth edition has probably come out in 2014 or 15, late 14 or early 15. The second key contribution of the McLean Center, I think, has been this focus on the doctor-patient relationship and our contributions in helping to develop the model of shared decision-making, the model which is pretty much the prevailing model in the United States at this time. It goes under a lot of different names. You don't have to read them all, but the gist of it is that doctors and patients talk to each other, exchange truthful information, and then participate jointly in reaching the right decision for the patient. Some of that comes out of the doctor-patient accommodation model. Some of it comes out of the President's commission report of 1982, reporting on the informed consent in the patient practitioner relationship, in which they ended up saying the commission's view is intended to encompass a multitude of different realities, each one shaped by the particular medical encounter, and each one subject to change as the participants move toward accommodation through the process of shared decision-making. This is one of the early uses in the literature of the concept of shared decision-making. So I think that was an important contribution. Third, I point to the topic that Ellen Fox talked about this morning and that many in the audience, John Lapuma, wrote one of the early books with David Sheetamire. Is David here? Yeah, David's back there on ethics consultation. I think we started ethics consults officially in 1985 when John became our first ethics fellow. Informally, we were doing these consults probably from the mid to late 1970s. Chicago was among the first hospitals in the U.S. to offer ethics consultation service, and with a lot of our fellows contributing in faculty, we pretty much have helped develop much of the model for ethics consultations around the country. This was an old paper that John wrote. I think this paper was published in 1987 based on cases that John had seen a few years earlier. This is a paper that John and I wrote with Carol Stocking and Mark Silverstein. Again, reporting on our experience, this paper I think was 1988 in JAMA. We've now seen well over 2,000 cases in the past 25 or 30 years, and so far as we know, that bullet at the bottom, despite the complexity and conflicts that often encourage ethics consultation, as far as we know, no lawsuits have resulted from any of these 2,000 cases. That's an incredible record. There was a question of whether ethics consultations would generate lawsuits or reduce them, and it's a question that's never been studied, but this is a little anecdotal information on it. We also, as Laney has pointed out to me, introduced the concept of research ethics consultations, introduced it in a 1989 paper in which we said research ethics consultations is a process in which ethical issues raised by an innovative therapy are analyzed before the protocol is submitted to the institutional review board. This process has been an essential part of our liver transplant program in recent years. Well, this was the first mention of the concept of research ethics consultations, this collaboration between the clinical investigators and the clinical ethicists before the IRB, and together they review the design and implement a research project that raises novel questions in human subject protection. I should say that the CTSA, which Laney is a co-director at Chicago, has used that model in its early five or 10 years, and Megan Collins and I, I think Megan is in the audience, used it in more than 100 cases when we were the ethics committee for the Immune Tolerance Network, a national network supported by the NIH for the last 10 or 12 years. Another contribution has been the clinical ethics fellowship training. I think it's clear that this is our signature program, the McLean Center Fellowship Program is the oldest, the largest, the most successful clinical ethics fellowship in the world. It started in 1981, I mentioned this morning when Joel Howell became our first fellow. It's continued to the present. We have now trained more than 320 fellows, more than 250 physicians, more than 25 of our graduates have directed university ethics programs in the US, Canada, Europe, and China. Former fellows, 20 or more, it's hard to keep up, have held or hold endowed university professorships, and we believe that more than 50 of our fellows are holding appointments at, more than 50 US medical schools have our former fellows in their program. Most bold lines like this, which go downward, suggests that the size of the fellowship program is getting smaller, but in fact, each of those horizontal bars is a chronological year, and in fact, in 2012, 2013, we reached the greatest number of fellows. The current year has about 19 fellows or 20, so the line, as you see, is not diminishing but increasing. I wanted to call everybody's attention to the new, oh, I don't know what happened. That slide didn't come up. There's a new McLean Center website that went online yesterday. I don't know what happened to this slide. Oh, it is up there. Oh, it's not on my screen. The address is McLeanethics.universityofchicago.edu. I would urge everybody to look at it, refer people to the fellowship program, catch up on your fellowship cohort with BIOS, and let us know what you're doing so we can post the new information on the site. I did wanna say with regard to fellowship training that in the old days, we were the only game in town. There were no other training programs, but I'm delighted to say that these days, there are a half dozen or eight programs around the country that are training fellows, including the wonderful one that Rick Kodish started seven, eight years ago at the Cleveland Clinic, which trains three to five fellows a year, and he sent me a list of what his fellows are doing. It's a great achievement. There are other programs, Hopkins, Washington and Seattle, and many of these programs are doing things that we haven't quite done, and that is paying their fellows. Some day we'll come around to that. The fifth thing I'll be brief about this is our contribution to the empirical turn in bioethical research. This is using the techniques of clinical epidemiology, health services research, decision sciences to investigate ethical matters in clinical practice. In the 70s and 80s, bioethics was driven by this notion that legal and policy mechanisms would be sufficient analytic papers, but we started to work on papers suggesting that data was important if you wanted to change the behavior of colleagues, physician colleagues, and they would be moved by clinical data, empirical data that showed that a particular way of practice was better than the alternative, and for that matter, met ethical standards. And since the 1980s, the McLean Center has gathered data with survey methods and clinical studies to describe how ethical considerations are used by patients and doctors to reach clinical decisions. A brief word about the social context of clinical care. In the early 70s and 80s, as some of you know, I was pressing very hard that clinical medical ethics should stay focused entirely on the patient in the office or the hospital. It was Steve Miles in the mid-80s who said, Siegs, you can't isolate the bedside experience, the clinical experience from all the social and political forces that affect your ability to deliver clinical care, and having taken that blow from one hand long came John Lantos, who also insisted that we direct attention to the institutional, societal, and political issues that affect patient care, and of course, over the years we've tried to do so. While clinical ethics remains centered on the patient, the scope of the field has expanded to include these broader social, political, economic issues. Finally, the development of surgical ethics, fairly recent accomplishment. It builds on the McLean Center's successful clinical ethics fellowship program, allows a concentration for junior or mid-career surgeons interested in surgical ethics. The goal is to prepare surgeons, the academic careers that combine clinical surgery with studies in surgical ethics. Peter Angelos, who's the leader of this program, one of our associate directors, was featured recently on this nice story in Medicine on the Midway, and he's been writing ethical guidelines in surgical patient care, an ethics curriculum for surgical residents. I should tell you that the University of Chicago Department of Surgery has gotten the reputation around the country that if you want to train in surgery and you want to also get knowledgeable about surgical ethics, this is the program to choose. And any number of trainees in the department will say that they selected Chicago over alternative places because this was available to them. I like Karen Devon's quote in that Medicine on the Midway article, the idea of having a bunch of surgeons discussing medical complications and including cases where an ethical issue is a focus is more progressive than you might imagine. It has become part of the surgical culture at the University of Chicago. Well, having talked about the past, let me just look ahead. Where are we going and where should we be going? I think to a large degree, our past is our future. I think we've got to promote clinical ethics. We've got to defend and study the doctor-paste relationship. We've got to maintain our focus on the ethics fellowship training program and we've got to keep these key issues that have been sort of our mainstay over the years in mind, transplant, end-of-life, health policy, surgical ethics. I think we're going to continue to be the place that flies the banner of clinical medical ethics. There'll be others that are like us, but we will be the in the forefront. With regard to the doctor-paste relationship, that's been an area of ongoing interest and study since we started and it's gonna be a harder concept to work with and defend as we move into an era of health reform as we surely will. But we'll be there to try to do it. I think fellowship training, we're gonna promote the work of our former fellows and continue to train new fellows in clinical medical ethics as I say while encouraging other programs to do the same. Not seeing programs like Rick's as competition, but rather as colleagues who we have worked with already and will continue to work with. Similarly, I told you our past is our future. Lainey Ross has been one of the leaders in our focus on transplantation ethics. May I say that you work, Lainey, about the book? Yeah, Lainey is working with Robert Veach on a book, a second edition of a book on living organ donors. That's gonna be probably for the next 10 years of the Bible in the field. Dan Solmezzi, who's here, continues to write extraordinary work on end of life issues. Marshall Chen, who made Marshall, Marshall may not be here, continues to work on health policy issues. For example, this year's seminar series that Marshall and I put together 27 lectures on ethical issues in health care reform. We've already heard from David Axelrod and Mark McClellan and our dean and the first six or seven talks have been extremely good, attended by an average of 220 to 250 people. It's been a very successful series. And then, as I mentioned, surgical ethics with Peter. Is there anything new? Well, I think global ethics is an area that Peter Singer and Shola and Fumiola Patti have demanded that we get involved in and we are committed to doing so. And Peter described some of his work this morning at Grand Challenges Canada and the Rockman Center. And Shola and Fumiola aren't here today, but Fumiola is being inducted this evening into the American Philosophical Association in Philadelphia, the old Ben Franklin group, a very, very prominent program. I think we simply must get more involved in ethical issues in genetics and genomics. It is not just the wave of the future, but it's one of the superb strengths of the University of Chicago. And we have to get more deeply involved and committed to that area. As I work towards my conclusion, I want to acknowledge the McLean Advisory Board, Barry and Mary Ann McLean as the co-chairs, a wonderful board, K. Bucksbaum is here, Craig Dushiswa was here earlier, Nancy and Bud Foster couldn't make it, Dean Guestel is here, Stan Goldblatt is here, Dennis Keller couldn't make it, Jeff Keller is here, John Kinsella is not able to come, Rachel Kohler is here, Bob Murley is not, but Carol Siegel is, Brian Traubert is in Washington, George Ranney couldn't make it and Serita Walshowski couldn't. But this is one of those sterling small boards that Chicago is noted for that just has extraordinary depth of intellect and they've been very important in the evolution of the McLean Center. Barry and Mary Ann McLean have served as co-chairs of the board pretty much since the beginning. We're coming on to the 30th year into 2014 and I want to take this occasion at the end of my talk to introduce our next chair of the board who's with us today and that is Rachel Kohler. Rachel congratulations, Rachel received her bachelor's from Princeton which meant that Lainey agreed with this idea, an MBA from the University of Chicago worked for Booz Allen Hamilton and First Boston Corporation, joined the Kohler Company in 1992 as the director of corporate planning and development, has been a member of the Kohler Board of Directors since 1999 and since 2000 has been the group president of Interiors for Kohler Company. Rachel has been on the McLean advisory board for the last six, eight, 10 years and yes, time flies. We are so delighted to welcome her to the new role. We'll transition through 2014. That's the end of my remarks and I thank you so much for listening. Thank you.