 I'm going to go ahead and start because I'm trying to stay on time. How were your concurrent sessions? Yeah, a few of them ran over. I take that as a good sign. I heard some conversation, a little bit of laughter. A lot of people in some of those rooms. We didn't want to close the formal part of this conference without getting in the weeds and being really practical. I took as the animating idea behind my talk the notion that we have a responsibility to bend the arc of healthcare toward justice to take a little liberty with Martin Luther King's phrase. Some of you who signed up for this conference very early know that Jim Conway was going to give this closing lecture. He's a terrific guy. He was my colleague for many years at Boston Children's Hospital where he was the assistant hospital director. Then he went to the Dana Farber as the executive vice president of operating officer and then he went to the Institute for Health Improvement as the senior vice president before he eventually went as an adjunct professor in organizational ethics to the Harvard School of Public Health. He would have been perfect. I will not be perfect. When I talked to him about this talk, I said, Jim, I really need a cleanup batter. Someone who is a power hitter, kind of fourth in the lineup whose job is to clean up everybody on the bases, bring in all those walks and talks and base hits that we've been putting on the bases all day. Besides Jim as Irish, nobody can tell a funny story or a joke as well as Jim Conway, especially not me. But Jim is sick. I'm very sorry to say. I'm so excited to miss the opportunity to talk to all of you and he feels badly about not being here. So you're sort of stuck with me. I'm the pitch-pinch hitter. I've just exhausted my entire knowledge of baseball. But I do have a lot of experience with ethics committees and organizational ethics. So what I want to do is just get practical if I can make this work. Okay, so my objectives are to identify the procedures and talk about those in some detail, about an approach to doing organizational ethics, at least as one of our hospitals developed it, the one that Bob Trug and Jeff Burns and Mike Epstein and I over the years developed. And I want you to learn from our mistakes. So I'm going to talk about some of those consults because I think we learn best sometimes from the things that don't go quite the way we thought they were going to. So in the beginning, so I'm talking about the 1980s, we did the same thing that everybody else did. We did those policies that had to do with decisions not to resuscitate. We didn't get it right the first time. We've since revised it. We're still talking about the revision we just did. But anyway, we did that kind of ordinary policy work, including addressing cases and issues of intractable conflict and possibly medically inappropriate care or medically futile disagreements about medical futility and so forth. So we did those kinds of policy development and review that we all understand to be a core part of the things that clinical ethics committees in hospitals do. I want to tell you about a time when I was up on what we used to call the Multidisciplinary Intensive Care Unit for rounds, just kind of hanging around and see what was going on. And one of the intensivists said to me that he had talked with a family whose child had died in the ICU. And he had been involved in looking at the autopsy. The resident had gotten the consent. The autopsy had been done. The patient had gone to the pathology lab and after the results were back, this intensivist met with the parents to talk about, this is what usually happens, the results from the autopsy. And as they were asking questions, they realized that their daughter had been buried while our hospital still had her organs. And they were pretty surprised. The intensivist asked whether we ever do ethics consults about things like that. That's not at all like the kind of individual case consults that we usually do. I said, you know, we haven't and doesn't mean we won't and we'll talk about it. And a number of us talked about how to get involved in this and whether or not this was something that was appropriate for our hospital's ethics committee to get involved in. In fact, you know, as we discussed it with people, some people said, why do we even worry about autopsies anymore? We can look inside bodies before people die and maybe this is not really an important issue. Now, remember, or maybe you don't know, that Boston Children's Hospital is the place where Stella and Richard Von Praugh where Stella Von Praugh was a cardiologist and cardiac pathologist and she and her husband together developed the system in pediatrics for categorizing congenital cardiac anomalies and Richard Von Praugh's office, which I've been in has jars, not anymore, of hearts in them that were used for teaching purposes to show, for example, tetralogy of flow and its various permutations. So, you know, we really cared about getting medical autopsies done and doing them right. That said, there were a lot of us who didn't know very much about autopsies and didn't know how much other people knew about it. And so Bob Trug and Jeff Burns and others and I decided that we needed more information and we had a really good fellow, Glenn Rosenbaum, who actually did a national survey looking at all pediatric and adult hospitals that had critical care fellowships and asking chief residents, as sort of the stand-in for residents generally, about what the autopsy practices and the autopsy consent form looked like and also checking their knowledge about autopsies. One of the shocking things about this, and I'll detour and I'll try not to be very long, is how little they knew about what a complete autopsy really was. Now, these are the people who, in the middle of the night, are the ones who are getting consent from families, so if they don't know that it's pretty routine for the internal organs to be retained, then how are the families going to know? And if it isn't mentioned or it isn't said clearly in the consent form, how are families going to know? So, among the things we found from that study was that 72% of the autopsy consent forms had no mention of what would happen to the organs, and 97% of the places that were surveyed, and this had a very high response rate, had no educational materials for the family. Now, there was a fair amount of opposition to doing this look at autopsy consent practices at our hospital, especially from, but not exclusively from the chief of pathology, who really sort of felt that we ought to be minding our own business, and he hadn't asked for our help, and why were we doing this? He didn't think the ethics committee ought to be involved at all, and he said so, I didn't ask for your input. Not to say that there wasn't some support. Our associate general counsel, for example, thought that it was a good thing to do now. There's another possibility that we might be sued over something like this, and if we actually took seriously a concern that the families had, and really changed our practices and made them better to address the concerns that they raised because of what had happened to them, it's sort of doing the right thing if for maybe not even for the best reason, maybe not for a wrong reason, at any rate. Mostly the question to us was, what gives you the right to go looking over our shoulders, meddling in our business? Now, not being someone who's easily stopped, we didn't exactly quit, and we did end up making some recommendations for changes in the autopsy consent form. We spent hours and hours of ethics committee meetings talking about whether we should have a checklist and let families have a buffet, and we talked about differences between complete and partial autopsies, et cetera, et cetera, et cetera. At any rate, we also looked at the education for residents and attendings about what an autopsy actually involves and the kind of educational program for the multidisciplinary team around things to do at the end of life, particularly when a child dies. So when I was preparing this talk, I went looking for our revised autopsy consent form, and I don't want to seem narcissistic. When I googled Boston Children's Hospital Autopsy Consent, that picture came up, and I thought to myself, God, that's how I felt. It seemed like this never was going to end, and nobody liked the fact that we had their nose in their business. We did end up five, five years later with a different autopsy, a different chief of pathology, but I had nothing to do with that. A new consent form that lists, writes, explains what an autopsy is, offers some options for what happens to organs and also included permission for research if tissues were retained and information about other limitations. Now, this is not about autopsy consent. This is about organizational ethics consults and one of the things we learned from this is, you know, it's a little hard to go mucking around in an institution around broad system issues and policy concerns without some sort of authorization for at least looking at it. And so we had to resolve this problem about, at least in this case, that we had not had formal institutional authorization. So we sat down with our chief administrative team and Bob and I, I'm not sure, I didn't tell him that I was going to say this, but I'll take responsibility if he doesn't want to, outlined a process for going about doing organizational ethics consults. And I outlined this list of things to do and this talk will be in a PDF on our website if you want to go back and get it later. Because it sets out a process that we developed whereby we actually work with the CEO or whoever the administrator is around the issue that has been coming to us and we think raises some pretty important ethical issues and figure out whether or not there's enough of a problem there that they and we both think that we ought to devote some attention to it. And then what we do is move forward by proposing some way of doing that. And as James mentioned earlier today in the panel discussion, our standing clinical ethics committees or sometimes our IRBs, research ethics committees, don't always have the requisite expertise in those groups already. And so sometimes it's best to put together a task force or a study team or a working group specifically around a particular issue when there's administrative authorization, draft a charge about what they're actually supposed to be doing and I can't tell you how many times you go back and look to see what that charge says you said you were going to do and a timeline with internal, interim deadlines and a date for getting a report done now partly that's in there because administrators think when they've told you to do something it should land on their desk before the end of the week and if it's not, you know, you can't do it that fast before the end of the month and I don't think we've ever done one that got done in a week and there might be one that got done in a month but I can't think of which one it was and so we also said that the idea would be to pair up the people who lead this group in addition to putting on members who are the key stakeholders around the various aspects of the problem so that they would be led by someone from the office of ethics or from the hospital's ethics infrastructure the clinical ethics committee or the IRB along with someone else who is also an expert in the issue that you're dealing with so notice we have just in coming up with this process taken a step toward conceding that the things that we hear about that are issues in our hospital as the variety of people on the ethics committee are working on the front lines aren't always exactly the same things that the administrators think ought to be attended to and we have essentially said not exactly that we wouldn't take them up unless we had permission from the CEO or the relevant administrator so once we got this process worked out I think the fact of doing it sort of got some buy-in right away and so the next thing we knew our CEO wanted us to use it and we had a couple of parents whose children needed surgery they were Jehovah's Witnesses they wanted their children to have the surgery but they also did not want their children to have blood during it and we knew that there was a process within the hospital of finding surgeons and anesthesiologists and a team that was willing to be in the operating room under those circumstances so we also knew as we talked to these people that were they to get into trouble around blood loss to a person they were planning that they would intervene and give blood if they had to rather than let the child die in the OR although the understanding in going to the OR was that the parents had agreed to the surgery but not agreed to the blood and we also had a patient coming up who had a very significant spinal deformity that needed a long complicated surgery that might well involve some blood products and so the way we handled that ethics consult was to put together a team that was co-led by Judy Johnson and one of our senior surgeons John Emmons and of course we had Byin from the CEO who wanted this to be done and we identified a working group with co-chairs and members and a timeline and we did a report with recommendations and just a cut to the chase we basically said that rather than singling out patients whose parents were Jehovah's Witnesses really what we ought to do is change our practices in the operating room to minimize blood loss for all our surgeries and have these various alternatives to blood transfusion available for all patients including patients whose parents were Jehovah's Witnesses it was in my opinion an excellent report and it went on the shelf and it's still on the shelf now partly that was our problem because we didn't get into the finances we didn't talk to people about what it would cost although we had done some exploration and provided some information about alternatives for things that could meet this recommendation so the lesson learned for us was that we really have to anticipate in advance who's going to get this report and have responsibility for responding to the recommendations that are made and even though our co-chairs went to the medical staff executive committee described the process and the recommendations and so forth and we tried to follow up later by talking to various people in the OR in fact I hope people don't feel terrible about having invested so much work and something that didn't happen we did learn a lot but in fact we didn't change practice now should you get discouraged let me just say we had lots of positive effective organizational ethics consults that did have good outcomes one of them had to do with cases that were coming to our ethics committee around issues regarding staff and families involvement in social media at the time we had like 20 different words for describing what was happening on the internet and what the problem was and so we use this same process there was definitely institutional authorization in fact there were a number of managers who wanted to take the policy approach of just say no and there were a lot of staff who wanted the opportunity to cite a policy or talking to families that the hospital forbid them to do to be Facebook friends or whatever it is we had a nurse who was on the care pages of a family who was reporting about their son and his illness at our hospital who learned through care pages not through taking care of the patient but one of the family members was suicidal and so when you're not exactly a lurker but when you're on these social media and you find something that's clinically relevant what are you supposed to do about it we also had a patient whose child received a donated organ who did an internet search and found out by looking through the news and the obituaries and so forth who the likely donor had been and contacted that person and then got nervous after the plan to meet the mother of the donor, dead donor in our hospital lobby and told the clinical team that she was worried but this is going to happen like in 15 minutes so there were all these issues around how you learn this information and what staff are doing in participating in social media and so there was this tug about whether to just say no or to actually have a professionalism conversation about helping people develop the judgment regarding their responsibilities and boundaries in interacting with patients and their families in this way among other things we had a student who was taking an ethics course and in an MPH program from Tufts who worked with us to do focus group interviews both with families and with staff and that formed a piece of the data that we included in our report recommending that we actually have an educational program which we do now have around social media it's in mandatory yearly reviews the sort of thing that gives everybody a groan when they come up to get done but we also had an educational program that was carried out through ethics rounds on the clinical units to give people cases for discussing what would you do, what should you do why wouldn't you do that with their peers so that they had some sort of anticipatory ideas about how to handle requests to be a Facebook friend from a mother of their patient, for example and there are some definite things you shouldn't do like post pictures of your patients on your Facebook page and so we wanted to get some of that message out too so that was just to say they're not all unsuccessful but I'm going to go back to learning from our mistakes because I think that's most useful so we had had a couple of inquiries and conversations with people who were involved in continuing to care for children who had early infant and toddler surgeries around genital reconstruction for what used to be called intersex conditions as a general category and there were still a number of parents whose children were in school age or adolescence even a couple of young adults who had not disclosed some of this information to their children and as you might guess as we were getting more and more knowledge about what's possible through genetics everyone was worried, the staff in particular about these growing children being a bucle smear away from learning genetic information that they wouldn't have any reason to know if they hadn't been told decisions that had been made early in their childhood and our CEO is a urologist so we thought, he knows this problem in spades isn't this just exactly the right kind of organizational ethics issue to suggest we try and tackle and so we put some stuff together and Jeff and I sat down with him and he looked at us with something close to this and I was not prepared I just didn't even think about the possibility that he might not think this is a great idea that said, you might remember that the Intersex Society of America and people who feel very passionately about this issue were picketing outside hospitals and after I got my balance back and thought about this for a while in spite of the fact that we'd already done an educational retreat all day on it and invited some staff and our whole ethics committee to talk about it I realized, geez he doesn't want them outside Boston Children's Hospital picketing and if we open up this box where is this information going to go and who's going to hear about it and I would have liked to have done this consult but we didn't do it and in fact what we did do is find other ways to talk about some of these issues at the time well still, David Diamond is a former fellow from our bioethics program he was the person that we were recommending co-chair this task force he has since developed the gender management service at Children's Hospital for children with disorders of sexual development and works with Norm Spack who's now retired but there have been other opportunities to find other ways to tackle some of this but it wasn't done through the kind of process that I'm suggesting so lastly I want to give you an example about pediatric organ donation using cardiac death criteria as you all know most deaths in intensive care units today are deaths by decision to withdraw life support and if you're working on a clinical ethics committee you're probably involved in a fair percentage of the hard cases that come up around withdrawing life support although that's now I think getting routine enough for not having to go to ethics committees for discussion but this does mean for a while that there had been fewer organs available for transplantation because patients weren't progressing to brain death and that was one of the ways that organs were procured and so in the 90s teams began to talk about using so-called non-heart beating donors and we got a call for an actual individual case consult somewhere near the middle of the night about a patient in the operating room and a question from one of the surgeons about how long we actually should be waiting before declaring death and making that first decision to procure organs and actually all over the country that was a huge and in some cases still is debate you know is 60 seconds too short I think most everybody thinks so now is 90 seconds is it 2 minutes is it 5 minutes is it 10 minutes and especially in pediatrics where the capacity to resuscitate young children even after a fairly extended period of time is it's pretty remarkable so as a result of that middle of the night discussion among the surgeons and the critical care folks and some of us from the ethics committee the hospital decided to put together a task force on pediatric organ donation using cardiac death criteria that Charlotte Harrison I don't know if she's still here but she was involved in along with Bob and a number of other people in our hospital and they made recommendations now the reason I picked this one to give as an example is because one of the things that this task force did is decide that there were issues that we really needed some community input about and so the Harvard teaching hospitals have something called a community ethics committee some of you went to the session that Carol Powers and Inos Gardner and Jolene McGreevy did around their most recent report regarding unknown and unrepresented patients and so this was the first case that came to that committee and Charlotte provided a very detailed memo that was drawn up by the task force to the community ethics committee with some very specific questions that we wanted their input about and just to tell you about one of them this discussion in the pediatric organ donation using cardiac death criteria's task force was very contentious this is about do children die still in the intensive care unit with their families there and then get raised through the corridors to the operating room to procure the organs or do we set up the operating room so families can be there and we watch them as we withdraw life support and see when they die and then we do the incision to retrieve the organs so there were a number of people on the task force who went into the conversation and never changed their minds about this just being a terrible idea and there were other people who went into the discussion feeling like yeah we need to find out a way to do this and do it right and so among the things we entertained was the possibility that we would not tell families that there was this other way of donating their child's organs unless they asked us and if they asked us then of course we would tell them all about it and so we explained to the community ethics committee that this was what the task force was considering the community ethics committee sort of looked back at us and said what and it may be the only thing in all the reports they've been so emphatic about they said this quote this approach was unanimously, thoroughly resoundingly rejected by the community ethics committee that's about as emphatic language as I've ever seen in their reports and they also talked about the organ donation language using this presumed presumptive consent process which they thought was creepy so anyway this was an example of getting at least some pretty informed and thoughtful input from people who are not on the inside about something that could affect any parent whose child very unexpectedly and tragically ends up in an intensive care unit and is going to die and who might want to think about donating organs so and one of the lessons learned from this was when you pick members don't pick people who are so dug in as a task force ahead of minority report in our hospital so just to say that there are a whole bunch of kinds of ethical issues that can be handled by the kind of method that I'm describing I'm not going to talk about these in any detail but they'll be on the PDF on the website and to review what the pitfalls are you know you have to deal with giving advice that is or isn't institutionally authorized you have to arrange in advance for follow up on the recommendations that these kinds of task forces make getting to know is a little hard to hear because you've gone to a CEO and you find out that what you thought really needed to be handled they don't want to hear about and figuring out what to do with that your advice is probably as good as mine and then figuring out how to construct a task force that's actually effective in getting their work done without being deadlocked in disagreements is important so I've only talked about ethics committees as a multidisciplinary group in most cases here specially formulated for dealing with some of these kinds of inside institutional issues which is not all there is to organizational ethics but it is I think one way of getting into the weeds and getting very practical about how you could actually when you identify an ethical issue in your institution that you want to do something about in a broader way use this kind of process so in closing I am convinced that there's a role for ethics committees in addressing organizational issues not just ethics committees looking at individual case consults after 30 years of working with ethics committees not just my own at Boston Children's Hospital but also reviewing ethics programs around the United States and a couple in European countries in fact I'm going to an ethics committee in Maine next week to talk with them it's clearer and clearer to me that healthcare ethics committees are an underutilized resource in our hospitals and healthcare institutions now I suspect if you're working on an ethics committee you might not feel that way because for one thing you don't get a separate salary for doing it and for another thing you know it's kind of a mixed blessing when you get a request for an ethics consult but I'm talking about not just those individual consults but the problems around them that are really bugging you and that sap morale in an institution and finding a way to try and address it and that sometimes gives you energy you didn't know you had in my opinion members of ethics committees include some of the most committed, energetic still idealistic value centered staff who feel called to continue working in a hospital people who care about doing good not just doing well and who work long and hard to try and solve ethics how many of you have been in ethics committees they usually are scheduled for an hour and a half or two hours that went over time in trying to talk about a case consult yeah so you know and that's not billable hours right in my opinion ethics committees can be relied on to think creatively and also speak candidly about ethically justifiable alternatives about what to do and what not to do they want as we all should want to be proud of our hospitals work and mission in the world they want as we all should want to help our hospitals fulfill their missions to heal the sick ease the suffering and prevent the sickness of those around us especially the most vulnerable and least well off it is not that ethics committees don't understand the pragmatic and financial goals of keeping a health care system solvent it's not that ethics committees don't understand that phrase we've already heard today no margin no mission they know it takes money and operating margin to provide health care but ethics committees are also likely to say no mission no margin when hospitals lose sight of their ethical responsibilities especially in the domain of their clinical mission especially when staff don't feel able to fulfill their mission to serve the sick with care and compassion the human infrastructure starts to crumble and the margin as well as the mission is compromised in ethics committees hospital administrators have already in place a group of committed staff who bring multiple perspectives and disciplines to the examination of inequities and broad social justice problems in delivering health care I think it's time for ethics committees to partner with hospital leaders and for hospital leaders to partner with their ethics committees to identify and address bigger problems in health care not all of them at once spoken or two at a time that we can all agree need our attention and a compassionate values-driven mission-driven solution to make our institutions a better place so that's all I have to say I'd love to have comments or questions and see what you think Bob for many reasons and part of that being that they would not be more likely to respond to the opinions of the committee although as you pointed out not always could but I think that that same strategy also leads to one of the arxist criticisms that this committee has overall which is that they have been completely co-opted by the hospitals in which they were and that unless leadership agrees to support exploring a certain issue then it doesn't get done so any of the more contentious issues remain unexplored we have Charles Foster who was last year discussing his book on this and I mean he was partially critical of the complete absence of the inability of that committee to be outside and to look pretty at what's going on in hospital and it's particularly relevant to the topic here of social justice because I think very often hospital administrators do not want to talk about that they see it as a threat to their sort of financial plan and so it's kind of a mixed bag it's not all on the positive side and I don't know what we can do about that because we do work in these hospitals our salaries come from them and to to pick on topics that they don't want you to talk about can be very counterproductive to our existence yeah and I think sometimes we actually do have to take risks I know you know this because you know it may not save lives but Elaine and you and I and a bunch of other people have been very involved in talking back to our hospital about the decision they made around Proudie Gardens so you know maybe not the most compelling ethical issue in the world but I think it matters and so there are times when you actually have to decide is this an issue that's so important that we're going to find a way to deal with it and if I lose my job over it I'll have to look for another job now I'm not telling you all to do this I'm just saying it has occurred to me more than once has it ever occurred to you has it ever occurred to you yeah, yeah I agree and I had kids and I didn't look for another job but those are risks that are very hard to take and you don't necessarily have to take them and it's not that hard to find one that could get administrative buy-in unless you have a CEO who really isn't able to step up to being the chief ethics officer and if that's the case then it's a really hard environment to work in Danish you know the financial incentive to do the work then is that the way to go about it or is that another it's very clear you're not going to be effective if you can't take into account and see from the perspective of hospital administration the relevance of the financial consideration so it's just do matter of course they matter okay, tired, ready to go so let's close I want to say a bit about the poster session I'm not sure whether you all know first of all we started a master's program last fall and admitted 21 students 10 of whom will be graduating in May a part of that master's program requires a field experience so in addition to getting an academic a rigorous academic education they also can't get out of our program without having some familiarity with the work of bioethics in the real world and so those students who are graduating this year have prepared posters of their field experiences and their capstone projects and you have on your name badge a number on the back that corresponds to a number of one of the poster boards it has two posters on it and so what we would ask you to do is go to the poster boards that you have the number for to give our students a chance to tell you about the work that they did at least two of them and then you know we don't think it's going to last for more than you know one group at each post a set of two posters but after that you may want to go and look at some of the other ones and also go pick up something to drink and something to eat we're going to have a nice reception I want to give a thank you to our staff you know we are now two years into this new center for bioethics we've hired 14 adjunct and part-time faculty and six staff Lisa Bastille who's here is our program and finance administrator Lisa Mayer designed this great booklet she's our communications coordinator and Blair Kahn and Paula Atkinson and Tony Tuggenberger here along with Brooke Tempesta who's the coordinator of the masters program so if you had a good time today please tell them thank you we have just started yesterday a fundraising effort our budget didn't change between when we were a division of medical ethics and our new center for bioethics we have hired all those staff I just told you about and quadrupled our programs and we found money in various places and we're working with a development officer to try and actually identify some philanthropy and we've gone after a number of grants including the one that supported this conference but we are also providing a card that's on the table if you didn't get one for individuals to let us know that you're willing to financially support the center now we're not asking you to put us in your will although if you want to do that that's okay what matters to us is that we have your support that could be two dollars or twenty dollars or two hundred dollars or twenty thousand dollars you can do the math I would be happy if we had over the year a hundred percent support from the people who interact with our center for bioethics even if every single one of them is a two dollar donation what we care about is your participation with us in the work that we're doing so you can either put a check in here or you can go to our website and click on the button and use a credit card but please also know that this is something that we're going to be doing that we will want your help with as we figure out how to raise funds for the center we were allowed to become a center at something around ten percent of what's ordinarily required of a budget to start a center at Harvard Medical School and we're trying to be very good stewards of that money but we also this is the thing you learn about being an administrator like it's money matters and I was really into thinking about just do the right thing yeah so anyway that's it for fundraising on behalf of our planning committee our staff Bob trug and myself we all want to thank you for coming so go see the posters and by all means stay and have a drink with us and go back to your home institutions and take up some of these broader institutional problems that bend the arc of healthcare toward justice thank you