 Okay, if everybody could take your seats we're going to get started again with the last panel of the morning. Clinical Ethics Consultation and End of Life Care. We have a distinguished panel of four McLean Center Fellowship alums and for this panel what I'm going to do is introduce them all briefly first rather than doing it in between. They're going to stay in the audience so they can see each other's slides and then they'll all come up at the end for the panel for the question and answer period. First speaker will be Susan Toll who's founder and director of the Center for Ethics in Healthcare at Oregon Health Sciences University. She's a professor of medicine, professor of nursing and professor of dentistry there and holds the Cornelia Hayes Stevens endowed chair in healthcare ethics. She did the fellowship here in 1989. Paul Helft is director of the Fairbank Center of Medical Ethics in Indianapolis and an assistant professor of hematology oncology at Indiana University School of Medicine and the Simon Cancer Center and he finished the fellowship here in 2000. Woody Moss has been professor of medicine at West Virginia University since 1994. How about them ears? Director of the Center for Health Ethics and Law at West Virginia University and finished the fellowship here in 1990 and Annette Dula just coming in divides her time between the Center for Values and Social Policy at the University of Colorado at Boulder and University of Pittsburgh Center for Bioethics and Health Law. She's on the advisory board of the Tuskegee University National Center for Bioethics in Research and Healthcare and is one of the leading bioethicists in the country on racial aspects of bioethics and she graduated from the fellowship program in 1991. It's wonderful to be back to celebrate 20 years of having been here to see classmates and friends who have been part of this experience. I thank the McLean's for making it possible for me to come back 18 of the last 20 sessions and the joy of being able to talk about Mark's impact on end of life care in this country and beyond and how that has occurred and what more needs done is just a fabulous opportunity. Our panel is a little unique. We're the only panel that is all fellows and so there will be a bit of reminiscing and a bit of Mark the good and Mark the mischievous and so this will be a bit of fun for us. Let me begin by looking at 1988 Mark and I and talking a little bit about coming here in 1988 20 years ago and what some of the things were like then. The program that had just been launched was called a mid-career award and three of us including Jay Jacobson myself and Mark Kinsella were supposed to go back and build programs of our own. Mark had very high expectations for us and he made them very clear the first week or at least he made them clear to me increasingly in talking to colleagues. I'm not sure this was an equal opportunity Mark but the first week Mark came in stood over my desk with a tablet in hand and talked about his expectation that there would be 10 manuscripts and two grants during the year and then every three weeks he went back stood over me he's quite a bit bigger than I am and said do you have anything to add to the center's CV? It's been three weeks Mark did he do that to you Jay? Because he didn't do it to Woody I just learned this morning so not everything was completely equal. There were some challenges thank goodness for Anna. Anna was my salvation that year because there were a few challenges I was the first nursing mother Mark had had in the program and the first week when Mark said all of the fellows go out on Friday Susan and smoke cigars and drink port but he was very equal in that but there's something else I want to tell you about Mark and it is what he does to help fellows be successful this photo is taken in Oregon because Mark came back multiple times to Oregon at this particular time he came back to help redesign how our center would be located this was taken before I had finished the fellowship because I finished in 89 going back to negotiate what the infrastructure for our program would be meeting with the provost meeting with the president and talking about how it would be much more effective if our program reported directly to the provost rather than a dean and so that we could be much more interprofessional and that we would be much more effective reaching out statewide and it's so proved to be true and Mark convinced them in the Mark way how that would be the very best model for us to have some time later he came out and met with several donors one of whom was Cornelia Hayes Stevens who liked Mark very much and I am now the Cornelia Hayes Stevens chair thank you Mark so there were many things but Mark continued to push to encourage to nurture and to guide with many phone calls and much wisdom about political challenges fundraising challenges the challenges of building infrastructure and we continue to debate how much the role of data in guiding change should take place and we'll come back to that in a moment Mark's impact is in two profound ways one is he does have a number of very sentinel publications about end of life care decision making respect for patient choice in the doctor patient relationship the other is the nurturing of fellows fellows who go out apply what is learned here disseminate build on the shoulders of giants and really have impacted end of life care across this country and beyond I'd like to look at how that applies as an example of one of the papers Mark has written in this area and there have been many and to look at what we've heard about the medicine of strangers and the medicine of intimates via looking at the Karen and Quinlan case Mark uses law the arts and the doctor patient relationship in this paper he talks about Michelangelo's piece first at this period of time and then again 50 years later he draws the analogy that this piece is much more like Karen and Quinlan in the courts following all the rules of art of physics there isn't the kind of intimacy Christ faces turned forward she's looking sadly but clearly not too tightly that this is following all the rules all the structure very much like the Quinlan experience in the courts and the experience of less distant relationships he then explains that this piece over 50 years later by Michelangelo is much more like the experience of Karen and Quinlan and those who cared for her in the 10 years after the court case that the rules of intimates are not so structured not so rigid that actually by physics you couldn't hold up a deceased person at this angle the way things are drawn that the closeness and the interweave and the intimacy was something that only a relationship of intimates can happen in patient care Mark wrote this in 1982 at a time excuse me 92 at a time when medicine had not had the kind of profound changes in the care of strangers that happened today this was before the advent and such a profound way of hospitalists in such a profound way of medical directors of nursing homes in such a way that much of health care I would argue in many cases most is cared by strangers so the challenge that he brought up in this piece has become so much larger for us all and Mark wrote in this piece I fear that too much of what we call medical ethics has been focused on the stranger model in which it is never assumed that patients families and health care professionals share common goals a terribly important statement in the life at a time when we all know that the ethics leaders across this country had very much agreed that patients have a right to choose to stop life sustaining treatments when they have been given appropriate information when the prognosis is poor but that overall so many times it wasn't happening and we've learned from people like Jack Winberg that your zip code matters more than your preference and while you may laugh Mark that is so much the sad truth and so why wasn't it happening why wasn't preference mattering was it because in part we were a medicine of strangers one of the things I have taken from all that I've learned here is that some of the great thinking needs another step to be taken into action that it's wonderful and very true to say people have a right especially under certain circumstances to refuse medical interventions but unless we can get the information from the intimates who know well to the strangers at a scene things don't change and that while we can be right it doesn't happen and the right is not effectuated and people still end up dying intubated in ICUs all over this country when they had made it clear to someone perhaps the primary care provider that this is not what they had wanted but somehow it doesn't get where it's needed it does mean embracing data and better understanding exactly why it's broken in any particular community and what it will take to change it I and a number of others including a dear colleague who followed the year behind Woody Moss that you'll be hearing from on this panel have found a way to implement physician orders for life sustaining treatment and design a way to record values between intimates in care and get them where they need to be to strangers who may provide the care later on this is the seventh version in Oregon of the post form and more information is available on the pulse.org website about how well things work but data shows that in nursing homes when patients check the top box in section a do not resuscitate and in section B comfort measures only and it is signed by the physician that if we follow them for a year of those who die not a single one got ICU care life support or ventilator the program actually works remarkably well and of those 5% ultimately died in an acute care hospital that somehow taking the wishes and values turning them into action and having them available at the right time for the strangers in medicine can actually work the program is beginning to look more like Mark's fellowship across the country than I would have ever guessed my intent had always been to go back and help the state of Oregon and the 4 million people who live there I hadn't really had a lot of ambition to look beyond the states boundaries but the program worked well enough that this is the number of states now using the program there are also several countries who are starting to implement the program this summer it was legalized in both California and New York by statute and will begin formal implementation in January in California though some counties seven have already begun to use the program and it's working remarkably well for them you will notice that Illinois is not in a leadership position here and there are some challenges Illinois has a particularly difficult law and that makes it very difficult to actually begin such a program but there are certainly people who would very much like to my overall message is that with the wisdom and experience and encouragement and push of Mark Siegler many of us have benefited enormously and his impact nationally on end of life care is profound and that taking the wonderful piece he wrote here about the care of intimates and the care of strangers that information can be shared from the intimates to the strangers leading health care to be far more compassionate in life's last chapter thank you very much to thank the McLean's and Mark and everyone here for allowing me the honor of spending the next seven or eight minutes with you and I also wanted to start with a personal anecdote because I wanted to tell you how I came to do what I do in my life which is to be a physician ethicist so my own future as an ethicist actually came as an epiphany to me as a few of you know I was born and raised in Indianapolis Indiana and got my first real exposure to the outside world by moving to Paris France right after high school where I attended a French public school high school as a senior and then stayed an extra year to work as a cook in a restaurant in the 14th district of Paris in high school there I was introduced to and learn to love philosophy I took nine hours of philosophy a week actually and taught by Catherine Chalier a philosopher and disciple of Emmanuel Levinas as she was the philosophy teacher in the modest working class high school in this immigrant neighborhood in which I attended school that year and learning to cook actually came by accident since one could get a job in a restaurant without working papers it seemed like a reasonable way to pay the rent on my seventh floor walk up apartment it was actually a room in the red light district of Paris where I lived as a 19 year old from Indianapolis so when I returned as a parent now I fully understand the impact that I had on my parents when I came to the university of Chicago and I didn't know any doctors had no one in my family who was a doctor didn't really understand what doctors did but sort of had this sense that that's what I wanted to do and I obviously had this naive sense that the two sets of interests were somehow compatible and I didn't know then what I know now that I'd spend the next 14 years here at the university of Chicago and I didn't really understand what doctors did and I didn't really understand what doctors did but I did understand the next 14 years here at the university completing all of my education and training so as a second year student in the college I catered a dinner one Tuesday night in 1989 very near the time that Leon Cass and Mark wrote their famous piece in the JAMA entitled Doctors Must Not Kill Mark came to the event where I was working and gave a talk about physician assisted suicide and I was riveted by his arguments and still fundamentally agree with them but I remember standing at the back of the room cleaning up and I had to stop working because it suddenly became clear to me almost as an epiphany that I now understood what I wanted to do I wanted to be Mark Siegler now all of you are thinking to yourselves no one really wants to be Mark Siegler and there would be a modicum of wisdom in that after all just imagine having to live with the ADD but I recall suddenly understanding that I wanted to be a doc who did ethics just like Mark he thus became like a father to me and I spent the next 12 years training in oncology and ethics with him and beginning my own career as a physician ethicist and I owe my inspiration to Mark Siegler and the force of nature that he is and for showing me what to do with my life's work all right I have the privilege of reviewing the JAMA paper that you've all looked at an ethics consultation service in a teaching hospital and actually just want to take the last two minutes to make I think one point which I'll get to in just a moment and in order to make this point I need to just tell you a little bit about where I work so I work at the Indiana University Medical Center in Indianapolis that's a view of the city and the monorail which connects our very large campus we have five hospitals total and our hospital system that owns the university Methodist and Riley Children's hospitals is called Clarion three downtown hospitals under one by law under one hospital system and we have as you can see nearly 1,500 beds all together the systems the state of Indiana's only tertiary care academic referral center our consultation group has 35 active members you can see the make up here a truly interdisciplinary program we have six or seven ethics fellows per year and then a group of 20 more people who regularly come to the consultation group but don't participate in the same active way and here's the way our consultation program has grown just over the past several years since we I think improved and consolidated our activities in late 2004 and we did 102 consults just when I gathered the data to prepare this talk before the end of 2008 and I just want to refer you I've reproduced the table which you can see on the your left hand panel from the lupuma paper and what they did was they created a classification of the reasons why physicians in most cases physicians stated that they had obtained an ethics console then you can see that they're the usual suspects now these add up to more than 100% because they actually coded all of the reasons that were cited by the physicians I've not reproduced that entire scheme but wanted to make the simple point that I was able I went back to this hundred that we did in the last year and fit just almost perfectly on the main reason that ethics consults were obtained in our large hospital system 20 years later and so I put this to you just to make the point that 20 years ago Mark's work on the early days of consultation I think got it all right and got it all there these are still the usual suspects the things on which we spend all of our time I was talking to Woody Moss last night and asked the question I wonder if we have any new tricks in our bag actually in our ethics bag then then we had back in 1988 and I'm not certain that we do in fact have any any new tricks so so thank you very much thank you Mark and to all of you like others I count myself very fortunate to be part of the McLean Center family I remember Stephen Tullman once saying that he had lost track of how many books he had fathered but as Paul suggested I sort of view Mark as the father of the McLean Center family and you know father's guide they provide a vision and we heard yesterday about the vision that Mark provided and then of course father's feed and who can think of a better dinner than we had last night and whenever I've come back for one of these events we've been very well fed so I view Mark as a father and ideally if you're a good father your children will get along well together and one of the things that's really been excellent is that Susan Tull and I have been collaborating now for a number of years on this national post paradigm initiative task force and I don't leave town without a copy of the post form this is the physician orders for scope treatment which is based on the post model in Oregon and Susan and I have been really thrilled to see that almost half the states in the country now have an initiative going to use this form and our research shows that it works well to not only identify but respect patients wishes so I just wanted to point that out I want to talk about working with Mark for just a couple of comments I think we'd all agree that Mark is brilliant he's enthusiastic he's tireless I asked a couple of I asked Emily and Ella would you agree that he has higher energy and they said are you kidding you know just and that's 20 years after I work with him and then he has amazing analytical skills I can remember time after time when I was a fellow we would be discussing a topic and off the top of his head Mark would say well I can give you five reasons for why that's true he said no no wait a minute six and then he would proceed to give six and I thought how on earth did he keep that all in his head and how did he on the spot come up with that so he was just amazing now I think we also agree that Marcus a character and and one of the real challenges for a fellow was to get time with Mark and Mark would often say come walk with me to clinic because one would think oh good I get a little bit more opportunity to talk to Marcus he's going from his office to clinic ostensibly it would be for just a little bit more time to talk to him but really after a while I realized it was that he could give me a new assignment okay so absolutely okay so that's that's the mark we know I also want to tell you that Mark taught me a great deal about writing it's as if he palpated and caressed every word in a sentence and he would write and rewrite and they would say oh no that's not quite it and he'd cross it out and he'd write it again and and so he modeled that for me because some of you may recall that Mark and I co-authored a paper in JAMA should alcoholics compete equally for liver transplantation now my children will eat liver but they're not really fond of liver okay and the that paper became affectionately known in my family as the liver paper okay because they would ask where's dad going here I am you know where I lived on 1320 East 56th Street for the year while I was here and after dinner I would often disappear with my you know to another room to my computer and mom would say my wife Marlene would say the kids oh dad's working on and you know I would need to have another draft ready for Mark for the next morning so that Mark could do all this to it and we counted I think that we revised it nine times before we submitted it but that was a real object lesson to me so that when I submit a paper and it's you know you know it's requires major revision and I submitted again and now it only requires minor revision and and then I submitted again thinking well now now it's going to be accepting that now the second referee wanted no big deal Mark taught me be you know be persistent and you'll get your get your papers accepted so I want to talk now about the that first that paper that we flashed here which really we have to understand was the first prospective study of ethics consultation in the country that was published in JAMA and Mark was not alone in his concern about ethics committees he wrote a year earlier although I support ethics committee several questions I'm sorry wait a second I I lost a slide here there it is okay what I'm going to talk about is Mark's ambivalence about ethics committees Mark's concern about ethics I'm sorry Mark's ambivalence about ethics consultation his concern about ethics committees the irony that he had all these concerns but yet he's a major pioneer in the field and then the impact of his contribution let me just go back and say Mark wasn't the only one who's concerned about ethics committees and ethics consultation really Ruth Pertillo if you go back and look at the literature time Ruth Pertillo and Bernie Lowe also were very concerned so we shouldn't think since we're all involved actively in ethics committees and consultation now we shouldn't think that Mark was you know was off base Bernie Lowe said although I support ethics committees several questions trouble me first are these committees ethical the goals and procedures of some committees may conflict with established ethical principles second is agreement by committees always desirable third are these committees effective like other medical interventions they need to be rigorously evaluated now Mark also was concerned about ethics committees and he wrote in a paper in the Hastings Center report in 1986 institutional ethics committees threatened to undermine the traditional doctor patient relationship and to impose new and untested administrative and regulatory burdens on patients families and physicians most troubling of all they may remove or at least attenuate the decision-making authority of the physician who is responsible medically morally and legally for the patient's care and Mark's concern continued ethics committees should divorce themselves absolutely from involvement in patient decision-making and from ethics consultations and should not even review and criticize decisions that have been made previously now that may seem Mark's up here laughing in the front row I've been sharing a hospital ethics committee for over 20 years our ethics committees do consultations I chair a statewide network of ethics committees that does consultations Susan I think chairs a statewide network of ethics committees probably many in this audience do that but back at that time that was a concern and the and as I will say one of the big ironies is Mark has probably done more than any other person in the country to train people to do ethics consultation and to run ethics committees so I just think that's fun and it's nice to chuckle about Mark's chuckling in the front row right now here's what Mark said about ethics consultation the ethics consultation service may potentially undermine physician responsibility in two ways first the physician may feel compelled by fear of liability or by peer pressure to seek an ethics consultation and to follow the recommendations of the consultant the use of ethics consultation is God squad or ethics police must be avoided because it will erode the decision-making authority of the responsible physician and some physicians may attempt to abdicate the responsibility by delegating difficult ethical decisions in intrinsic part of medical practice to the ethics consultant and Mark's concerns were well founded and my last comment is going to talk about the second issue I don't know that it's physicians abdicating Mark they just can't do it or they don't want to do it and I'll tell you a story at the end to talk about that what's ironic though is that at the same time Mark is writing that publishing this paper with John Lapuma and Carol Stocking and Mark Silverstein and Andrea D. Martinez saying our findings suggest that an ethics consultation service in the university teaching hospital can help physicians identify analyze and resolve ethical problems in patient care I'm glad you're enjoying this Mark okay so they identified in this paper three ways in which ethics consultation can help physicians first of all in physicians patients and families first of all it involves patient and family in the decision making John Lapuma I don't know if you're here but I think you recorded that in over 60% of the consults you had a meeting with the family as part of the consultation process it can reassure physicians that withdrawal life support was ethically permissible and I know that is something clearly that we've done a lot of the time surgeons will consult us and obviously the patient didn't want it and it's not benefitting them so of course you can stop the ventilator and yet the surgeons wanted us to come say yes it's okay and then it facilitated identification of patients' values and wishes now the irony of Mark's contribution to the field is that over 25% of the published articles in the literature between 1984 and 1994 were published by Mark or somebody that Mark had trained really an impressive contribution and then John Lapuma and Dave Sheetermeyer wrote one of only the book one of a few books on ethics consultation and then there are numerous publications by trainees and I think let's see can I find my list somewhere I had a list of people Bob War, Ellen Fox certainly Carol Stocking isn't a trainee but she wrote a whole host of things let's see Bob Walker Ron Miller, Carl Elliott you know just on and on and on the number of people who have published about ethics consultation I'm sorry if I left your name out now a paper that really Carol Stocking did with Ellen Fox and so Mark I give you credit because you created the environment which Carol worked and which Ellen trained I think really this paper although it was a study of just people going to I think a society for bioethics consultation meeting or something of that nature it was a convenient sample I think really it had a very key point it improved our understanding of ethics consultation those of you who may recall this paper ethics consultants recommendations for life prolonging treatment of patients in a persistent vegetative state what Ellen and Carol basically showed is that the consultants didn't really reach agreement very well at all about what they would recommend but in their discussion they made this very important observation they said ethics consultants should aim not only to make recommendations that fall within a range of ethically acceptable alternatives but also to bring about solutions that are harmonious and they went on to say consultants use a variety of strategies including discussion negotiation persuasion compromise and delay to resolve conflicts and they say the value of ethics consultation often lies as much in its reconciliatory process as in its prescriptive content and I think that was a very shrewd observation and then about five years after that when the American Society for Bioethics and Humanities published the report on core competency skills for ethics consultants they clearly recognized that interpersonal skills were a key part of what an ethics consultant needs to bring to the case along with knowledge of the clinical context and understanding of the law so Mark's impact on ethics consultation is really his research and those of his trainees established ethics consultation is an important and legitimate service to physicians patients and families but I would think I want to well I do want to close but I want to close with sort of a disappointment that I have that Mark probably has I know Mark has it because Mark wrote back in one of those early Hastings Center report papers that really thought ethics committees might educate people about ethical issues and sort of train themselves out of existence because there would arise moral communities in high risk ethical areas of the hospital Mark's remembering this now remembering the NICU and in the emergency department and the ICU on the hematology oncology ward and that really we wouldn't need we wouldn't need ethics consultants because we would have trained a whole group of physicians who would have embraced and carried this knowledge forth and made excellent decisions in patient care well to that let me tell you a story so I got consulted an ethics consult a couple of years ago by a cardiothoracic surgeon he had had the patient in the intensive care unit now for over a month it was clear the patient was dying the patient had done an advanced directive they clearly had said he didn't want the type of treatment he had been receiving for the last few weeks the family was asking that the treatment be stopped and he requested a consultation and I looked at this this is for us this is bread and butter this is a no brainer the patient didn't want it they've got an advanced directive that says they don't want it the family says stop and the cardiothoracic surgeon is gripped with emotion about what he should do in this case and I explained to him look you're alright I'll do a consult if you want I'll write a note in the chart and I said but really it's all clear you don't need to worry about this and he said to me I don't do dying as I talked to him I said what do you mean he said I just can't handle patients dying he said would you take this patient on to your service and sure I can do that you know it's no big deal you know I've established rapport with the family and I did take the patient on my service and we kept him comfortable and he died I think 12 or 24 hours later but I tell that story we sometimes forget because we have become very facile at communication in the ethical issues and the legal issues and even the clinical context a lot of our colleagues just are not comfortable with this stuff it amazes me I just was doing two ethics consults on Thursday it amazes me how it can still be so difficult for some of our colleagues so Mark I don't think we're going to train ourselves out of business I think you started something very legitimate it's been very helpful for patients and families it's been an assistant to physicians and really yours was the vision in clinical medical ethics that got it all started so thank you very much as I read through our paper preparation kit I was struck by two things first I was struck as I had been many years ago by the clarity the of Mark's writing is precise it's clear it's succinct and it's very easy to understand but I was also struck by a second thing I was struck by a second thing I was struck by the fact that I didn't see in any of these papers a mention of African Americans or women in his papers now after I stopped spewing and being all excited about it I settled down and I realized that I was being unfair I was being uncritical and this was a trivial observation Mark did something courageous did something valuable radical at the time and it was harder than writing a paper it was harder than giving us some money supporting us to do this it was more expensive I should say more expensive less expensive wait a minute it was more expensive and it was arguably a lot more lasting he did something that no other center no other director of a medical ethics center was doing he brought African Americans and that was September Williams Mirage the Kinding and me into his program and also incredibly there are only two of us were not doctors no Mark's papers don't bring up African Americans or women's issues but he did something much much better he gave us the opportunity the support and the place for us to focus on things that mattered to us and those things were African American perspectives on bioethics and health disparities so instead of talking for us and about us Mark provided a platform where we were able to talk for ourselves we were able to develop our own voices and our own approaches to bioethics he didn't require us to be clumped to be clones so as I see it enabling voice is a uniquely respectful action and Mark did it Mark of course could have written some articles on women and on African Americans and of course that would have been okay or he could have just brought in one African American American person but he brought in three of us and as we've heard before Mark can be extreme he didn't have to be all three of us his funder said that he only had to focus on ethnic issues but he went hog wild in the following year he brought in Katherine Mosley and Michelle Grant into the program that year at the center provided a foundation for feeling a void that many of us felt was missing in medical ethics and also in bioethics conversations we found an extremely vibrant exciting and intellectual community where we talked about issues that concerned women issues that concerned African Americans September Williams led a weekly seminar and we engaged with Jim Bowman and Carol and John and Stephen Tullman and Mary and Anne it was extremely exciting and as busy as Mark was he showed up at many of those meetings sometimes there were discussions filled all the way out into the halls with John and Ken and Carol and Mary it was an extremely extremely exciting time and what it did this exciting time it provided us it enabled us I should say to go out and to do our own thing I don't think we ever formally thanked you Mark so I am very happy that I have the opportunity to do so now and I know that Mary and if she were alive she would be ecstatic with joy at this honoring of you and I am particularly indebted to you when I decided that I wanted to go into bioethics I was approaching 50 years old what person is going to give a rather unskilled 50 year old African American a chance to make any kind of impact on the field and Mark did that thank you and the last few minutes that I have I want to give an example of how I think your work has helped show up in my own critiques in this article Mark tells us that Karen Ann Quinlan got extraordinary supportive care for the nine years that she spent in a nursing home you state that depending on which part of the story we focus on we get different meanings or different meanings are extracted and I did indeed extract different meanings from this article the the question that came to my mind as I looked at your articles was what if Karen Ann had been black and it prompted me to ask a number of questions relevant to the African American situation in this country in the 21st century not during Karen Ann Quinlan's time so question one that I came up with is what is the nursing home experience like for African Americans if a black Karen Ann were in a nursing home most likely it would be segregated and she would most likely have come from a segregated neighborhood racially segregated nursing homes have fewer staff they have greater financial vulnerability they are more likely to be cited for deficiencies that could get them closed or else very seriously damaged or hurt the person in the nursing home two thirds that is this is 6% of African Americans are concentrated in 10% of nursing homes and most black nursing home patients are catered to most nursing black nursing homes catered to medicated patients and there's probably no doubt that if she had been in one of these nursing homes no doubt she probably would not have lived the 10 years almost 10 years that Karen Ann lived now there are two kinds of nursing homes and most likely she would have been in a two tier in the second layer two tier nursing home and we all know where those two tier nursing homes are located they are located in the poorest counties across this country and also these are the kinds these low tier facilities are the kinds of facilities that serve African Americans more so than do the first tier nursing homes question two would a black Karen Ann have completed an advanced directive probably not in some studies whites are four times more likely than blacks to have an advanced directive Karen Ann's family requested the removal of the respirator a black family of course would not have asked for that a black family would have asked that everything be done for a black Karen Ann whether it was intubation or tracheostomy or feeding to placement a black Karen Ann would get more intense treatment when she was dying she ever got when she was alive so she would receive more intense treatment at the end of life than her white counterpart and it is only unfortunately it is only when African Americans are dying that they get this kind of aggressive treatment what about the quality of communication of the doctor patient family communication between African American patients the families and physicians is at best poor it's not much you can say about it blacks feel that they are not adequately informed about their charges for example black patients indicate a preference to discuss CPR but they don't usually get a chance to do so black family members report more problems than whites report with communication with their doctors now this all sounds very dire but let me just give you a little story last night some of us the people who are doctors were invited to have dinner with Mark his student his extended family and many of his friends but Mark also invited some of his patients and they were African American patients I went over to talk to some of them just because I wanted to talk to them and I talked to two women two people there and when one of them heard that she said well I want you to tell those people something for me I said okay so she said first of all I want you to get my name straight and she spelled her name for me she said my name is Hazel Birkendale and she spelled it make sure you get it right when you talk about it and she said you tell those people there that he is a very good doctor that he has brought me out of a lot of sickness and I can say that this is very African a very good African American phrase that she used by elderly people everybody is just crazy about him and she pointed to her husband and she said he is 91 and I am 85 and he has been really good so then I went to the next woman her name was Catherine Clark Catherine Clark said Miss Clark said well you know she did 60's I knew him when he had bangs and a beard she went on to say that well I was sick and I was just sure I was dying and I went to the clinic and they told me that Mark was in Italy so Mark called me all the way from Italy to check up on me she said I am so indebted to Mark seeker and the point of telling this is that I wish to get this kind of care and love from their physicians and particularly I am talking about African Americans and it reminded me of what Dr. Al-Charleau said yesterday that Mark was open to change and that he was open to opportunity and it also reminded me of what Dr. Dimais had said about bonding there is this relationship between bonding and communication you can't have a good bonding or good communication without the other so I just told them I promised them that I would bring this up today and I felt that I had to and I have one more what about hospice care of what about hospice care if I can find it a black Karen Ann family may not be aware of the hospice option or they think that the only reason to go to hospice is to die but if blacks only knew the kind of care that people in hospice get more might be willing to use it and this goes back to the lack of communication to black patients for example one study shows that in hospice that people lived people in hospice lived 29 days longer than people not in hospice now if African Americans knew this they would be scrambling breaking down the doors to get in hospice so a black Karen Ann might not be in hospice because of where she lived African Americans who live in mostly black neighborhoods use hospice less than blacks who live in non-black neighborhoods or who live in mostly white neighborhoods and if she is in a hospice there is a very good chance that her parents and family would pull her out to seek life sustaining treatments and that was because they thought that she was not getting good care or because they had not understood the difference between curing and caring Mark's paper though it doesn't specifically mention African Americans it does evoke the way that many African Americans think about quality of life and death with dignity they are not ready to consider permanent neurologic dysfunction or cognitive impairments as equivalent to death I have tried in these few minutes to provide a rough example of how Mark's has helped to sharpen my own perspectives my own critiques and my own insights Mark in the center provided an entree for African Americans voices to be heard in the larger arena in 1991 there was little scholarly work that was being done in this area there was nothing that even hinted that African Americans might not fit comfortably into the existing model of medical ethics but like other fellows from the center other graduates we passed on our experiences through our teaching, through mentoring through talking, through publishing through doctoring making our voices being heard throughout we hope was the field so I return to my first question did Mark Siegel contribute to the African American bioethics? absolutely he absolutely did Mark you have enabled our perspectives to be heard more broadly for example I have been asked to give a plenary at the 2009 ASBH conference this means that not only have you provided access for us but you've also I think broadened the field of bioethics by enabling us to participate so I want to close with just a recommendation as I think Peter Siegel was talking about what should be done for the future I think for the future that the center might consider recruiting people who focus on health disparities as a clinical ethics issue we know that American Medical Association is doing this and many government associations and groups of government agencies are doing this I think that the center is capable of doing this you've already done something pretty remarkable and I think you have a chance to do something else again and my last comment is what is the responsibility of clinical medical ethicists for helping to reduce health disparities in this country and with this I say Mark thank you so very very much is that better some people will anticipate this question or comment I think one of the things that was not mentioned in this discussion about the impact of this center on end of life care is the impact of this center on the development of the palliative care movement and I've discussed this with several people that several other fellows or many of the fellows including two on the panel at least are working in palliative care and myself now having trained here as a fellow I'm running a palliative care program at the Ohio State University which has four physicians three nurse practitioners I'm not doing any ethics except sitting on ethics committee and I think there's been a very profound impact of this program on end of life care through the impact on developing palliative medicine which in some ways is a kind of applied ethics and actually in some ways also reflects a lot of the ideas John Lapuma had about the way clinicians should do ethics in his earlier work about doing exams getting in the middle of the case and having medical opinions that are independent of the physicians who are caring for the patient and bringing those to the table so I'd just be interested in comments to that. Well certainly many of us in the early years wondered how far ethics consultation went into clinical care and there have been some interesting debates actually Mark Cayman saved me from a debate in Oregon about my stepping over boundaries and actually suggesting some practical applications in the withdrawal of life sustaining treatment where are our boundaries are they simply that we say a patient has a right to refuse treatment and life support should be withdrawn or do we actually suggest a little bit about some of the medications that might make a patient more comfortable because we've done so many consults we actually know do we suggest some practical things like timing or consultation or one of the things we've implemented to a great degree at my institution is a conscientious objection policy where before life support is withheld or withdrawn there is a careful evaluation including medical students and respiratory therapists of whether everyone not in a big public meeting but more privately is comfortable with the roles they might play or would they like to withdraw from the team we've had to pay a great deal more attention to conscience with the legalization of assisted suicide and a spotlight on differences of opinion but it has really served us very well with regard to withdrawing life sustaining treatment and caring beyond that then is their collaborative role for a palliative care team that continues to both teach and apply this care and I'm not sure nationally that there's complete agreement on the boundaries I am one who goes pretty far to the side of the application of everything that this wonderful program puts forward and having it actually carried out in the field not everyone shares my views and some people think some of what I do isn't ethics I'd like to suggest that putting a good spin on it that we've taken to heart the whole idea about the ethics of intimates rather than being the ethics committee that comes and just puts the stamp on the chart okay ethically permissible withdrawing life support to say all right now we're withdrawing life support how would a loving caring physician ensure that this patient is comfortable that the family's issues are addressed their support for the family so I'd like to say it's a natural progression what Mark taught us to be a compassionate caring physician who's doing medical ethics here it comes first of all I'd like to thank Mark and Annette because Annette knows very well that I worked very closely with Mary and Sukundi and was a wonderful wonderful wonderful lady and we all miss her so very much I have a question basically I suppose most of all for you Woody I had the privilege of working with Mark here when I was teaching at Loyola Medical School and what we set up our ethics consultation service there which I served on for many years and then served on one for many years in San Antonio always modeling myself on what Mark had taught us and the model of this program and one of the things that you presented Woody you noted the difficulty with even reporting ethics consultations to the ethics committee what we did was we had a small team actually an individual on regular call and we did the ethics consultation and then at the end of the month we reported to the large committee however we made it very clear that the committee was not to usurp our decision in any way or to override it or to make a decision at all but simply to provide us a sounding board for further learning and for further understanding the the situation both of the hospital community and perhaps of the medicine so my question is I have the same really great misgivings about ethics committees as such doing consulting and I'm just deadly against that as a matter of fact but Woody I would like you or anybody else to talk about the role or not of a larger ethics committee as a kind of a review and board. Right so sure Bill I accept what you say that the ethics committee is providing accountability for the ethics consultants and they hear the process of consultation that was used and comment on whether or not they think the right things were considered the right facts were obtained and the right recommendations were made and I agree with you that would be good now I think we all know that there are several different models of ethics consultations some don't involve a committee at all others involve a sub segment of the committee that's part of a there can be ethics because we're talking about recommendations to the center for the future I know the American Society for Bioethics and Humanities is considering this and Fox and her paper last year really identified the fact that most people doing ethics consultations really have not been well trained to do them so I think it's finally time to develop a set of standards for who should be performing ethics consultation I know people have been very nervous about it but just my last story indicated I don't think ethics consultations are going to go away and if they're not going to go away then why don't we at least have some way to correct people who will be doing them so those positions or those do consultations can be accountable to a set of standards I just wanted to make one comment or consultation groups that they have a remarkable capacity in my experience to self-educate so among their functions is not just review and accountability but really to provide I think a marvelous form for self-education with groups learning from one another that's a model clearly that started here I think anything go ahead I have the mic I think go for it so here's the thing the thing that's most important I think about Mark and thank you everybody for the comments and going down memory lane but the thing that is the most important is that Mark has been responsive to the times and the needs of medicine to fulfill its promise to advance human consciousness and those challenges are ever growing and ever changing it was 18 years ago I think that we did the Ted Kapo Town Hall meeting on access to care I practiced medicine in five languages every day in the city that I live in the issues around African Americans and immigrant Americans from multiple cultures are myriad the bioethical issues when you talk about globalization from where I am in San Francisco there is there is no separation between human beings at this time in history and the ethics center has to begin to do the things that if these are universal principles they have to do with universal things for human beings and you have to begin to look at what the barriers are to applying these principles and I think that we began doing this with African Americans we have in this city we have people who have been victims of torture who have been victims of abuse the center has to really begin to do what you did with Marion and with me and with Annette and making it possible for us to do our work you have to go the next step now in the advancement of human consciousness palliative care, the dialogue all the ethics consultation it works because it keeps the dialogue going but if you do not introduce into each one of those consultations some sort of assessment of the barriers that are apparent for people to get proper care then because of cross-cultural issues we're dead in the water in the modern world Michael I just want to ask you a question Mark did you ever consider what you were doing as affirmative action I'm just curious because at that time you brought in three African American women you brought in no white women that year I often thought that this was affirmative action in the Brown in the large written large it never occurred to me I don't know is Bill May still here you heard yesterday from Bill May about this quite extraordinary seminar at Williams College in the summer of 1975 Ed Pellegrino mentioned very briefly in his comments how he had encouraged the development of a series of such seminars through the National Endowment and how I was fortunate enough to be chosen to attend well one of the attendees at that meeting the whole family came to this and we lived on Williams College campus for five and a half weeks during July of 75 and one of the families who were part of our group with Bill May as the chief was Marion and Bob Secundi and their two little kids Susan and Joel the bonding that took place that summer was incredibly intense and so for the next ten years, twelve years Marion and I would talk we would meet we would plan, we would scheme on how to move the agenda forward and I remember in those days we were receiving funding support from the Henry J. Kaiser Family Foundation that Altarlov was directing and how Al and I entered into conversations about bringing this possibility to reality never in the language of affirmative action but always in the language of advancing the field and broadening the field quite in ways that September is urging us to continue to do as we move forward that was the context that was the context for this the fact that over that year we had three extraordinary applicants you and September and Marion who were going to come together it was a rare treasure and that didn't mention the seminar series that she and John Lantos and Steve Miles helped organize but she didn't talk at length about the book that John mentioned it just ain't fair which Annette then edited with the assistance of Marion in September and who is Sarah Garrett at Washington an extraordinary book brought out in September September and I have been talking this last day and this goes to what September said and what Annette said needs to be brought out again that second edition with all the key changes that have occurred in the 16 or 17 years since that book came out needs to be revised, redone it's a very, I think it's an important document and I'm hoping that I can persuade Annette to take on the editorship one more time I just have one last word to say it was very fair of Woody to point out when he talked about consultations that I was at one and the same time talking out of both sides of my mouth on the one side of my mouth I was urging the consultation as a way to advance the dialogue and the skills of people with expertise in medical ethics who could bring that expertise to the clinical arena to doctors and nurses and pushed by people like Dave Sheedemeyer David are you still here Dave and John Lapuma who brought out that extraordinary book on ethics consultation and Ellen Fox Ellen was here yesterday and I think maybe around later today James Tulsky down at North Carolina the consultation model was extraordinary now the other side of the mouth that Woody caught me up on when he said but Siegler was also saying no consultations no committees no nothing like that it was the final paragraph of that paper which he didn't quite talk about I mean what was going to substitute for the ethics consultant but what was going to be the substitute was what I called naively the democratization of ethics which was to say that there would be a transitional time during which the knowledge and expertise that doctors and nurses needed to get by in the real world of medicine would become available and essentially putting out of business the ethics consultant and that final paragraph I see Mike Millis here Mike raise your hand the final paragraph actually used organ transplantation as an example I said in this model of democratization that I had in mind that the depth and level of expertise exists in the modern medical center whether it be in Bill's neonatal intensive care unit or using the example of organ transplantation in the transplant units that are doing let's say in our hospital kidney transplant liver transplant heart transplant intestinal transplant pancreatic transplant intensive expertise among the real participants meaning the doctors, the nurses the social workers the chaplains, the therapists the the aides on the wards involved in each of those five or six transplant programs that we do and that most major medical centers do is so particular is so precise the problem matter is so different yes, you could talk about organ transplantation in the most general terms that you need an organ, you need a recipient you need someone who's going to kind of sew in the organ and that's the end of the discussion but if you're there on the wards you know that the problems in heart transplant and the issues in liver transplant or kidney transplant are so different I want that deep particular expertise to come shining forth and it was that that I was envisioning I think I think I've learned I think your example of the cardiac surgeon is a telling example that we could have all the right principles in place to handle end of life care to handle the proper allocation of the next scarce organ in principle we could have it all worked out and indeed get agreement but to implement that to make it operational turns out to be more than a generational problem that problem is going to be with us just the way inequality of care and disparities in health care lack of access health reform will be with us for more than one administration for let's hope one generation and not do these are long range issues and the principles alone are not sufficient to resolve them in practice and that's why this gathering is so important I mean because there are hundreds of people in our program and other programs around the country who are working on this day to day operational translation from theory to implementation in some deep ways in the Wittgensteinian model that Dan Sulmasey gave us earlier in some deep way it's that translation in the Pellegrino idea of that fundamental encounter between the health professional and the patient that's going to be needed and that doesn't get solved only with theory but requires also all of these wonderful people to practice it, thanks and on that note we'll break for lunch