 So my name's Caleb Alexander and I'll be I'm delighted to be able to briefly announce the Five speakers that we have in this next next session I'll briefly introduce them now The first is David brush and David will be speaking about how ICU physicians manage end-of-life conflicts with surrogate decision makers David's a pulmonary and critical care fellow at the University of Chicago He attended medical school at Tulane School of Medicine and completed internal medicine residency at the University of Chicago and His two-year fellowship program leads to a master's degree in public policy The second speaker is crudy acharya and she will be speaking about fragile X syndrome family views on disclosing information and Crudy's an assistant professor at pediatrics and a faculty member at the McLean Center here at the University of Chicago The third speaker is John Yoon speaking about levels of satisfaction and burnout among primary care physicians Is this an ethical problem? John's an assistant professor of medicine here and also on faculty at the McLean Center Our fourth speaker is Margaret moon from Johns Hopkins University School of Medicine and she'll be discussing an empirically based curriculum development for resident ethics Education and she's an assistant professor of general Peds and adolescent medicine She's actively engaged in teaching clinical research and ethics to fellows residents and students throughout Johns Hopkins She's also a member of the Center for Child and Community Health Research at the Bayview Medical Center and last but not least Andrew Aronson currently on service and busy clinical service But was able to make it here and he'll be speaking about different conceptions of risk in the organ market debate and Andrew's an assistant professor of medicine specializing in Hepatology here at the University. So as you can see just from the titles and background of these speakers I think that they reflect well the diversity of Scholarly work that's done within the McLean Center and that takes place here And I'm delighted to welcome all of them first David brush Thanks so much. I thought I talked today about physician management event of life decision-making conflicts with surrogates And the objective today is to review some of the research I've done during my ethics fellowship with my mentor Dr. Alexander What do we know about decision-making in the intensive care unit? Well, we know that 20% of all US deaths occur during or soon after intensive care unit admission The majority of deaths involve some form of withholding or withdrawing of life support and usually these decisions are made By patient surrogates rather than the patients themselves who are often incapacitated Conflicts between physicians and surrogates are not uncommon and depending upon how conflict is measured Depending on how conflict is measured. It may be anywhere from 75 to 79 percent of end-of-life discussions Down all the way to 30 percent Little is known about how physicians approach these conflicts or Disagreements over what the end-of-life decision should be and as an as a pulmonary and critical care fellow I had an opportunity for two years to sit on the sort of clinical side and observe different Practitioners have these conversations with patients and their families at the same time I was interested in ethics and so I was reading about sort of how to have a family meeting how to Engage in people about these discussions and I started to get very curious about the discrepancy between what was supposed to be happening and What was happening in real life? So with the help of Caleb When I started my fellowship we came up with three research aims and one was to describe how critical care physicians are approaching Conflict with surrogates my observation as a fellow was that often these agreements went fine as long as the clinicians and the family members agreed But very different things were happening when the clinicians disagreed with the decision the surrogate was making We were also interested to identify patient surrogate and physician variables that modify physicians use of end-of-life Influence in end-of-life decision-making and we wanted to survey critical care physicians attitudes about the acceptability and Effectiveness of some of the approaches we hope to identify with aim one So to accomplish these aims we sort of designed a mixed-method study in two arms One was to do qualitative work with key informant interviews of ICU physicians around Chicago The other is to do a mailed survey of a thousand critical care physicians that we plan to mail out in January of 2011 And I should also Say that we did actually put this into a grant form that was funded by the Greenwall Foundation for a pilot grant I don't know what's doing that So I did semi-structured interviews with 14 ICU physicians around the Chicago area And we tried we did a purposeful sampling to try to capture physicians in different areas of practice Three universities one university affiliated two private practice groups and one free-standing hospital We all interviewed physicians in those areas and the semi-structured interview was really an open Questionnaire format where I asked physicians to describe their general approach to decision-making Their approach to decision-making when there's disagreement. I asked them about recent or memorable examples of managing disagreement. I also asked them to Tell me about examples of either helpful and Unhelpful negotiation techniques that they've used in the past and also because we worried physicians might not talk about Unhelpful techniques that they use we asked what are your peers doing? What are your peers doing that you find? Appropriate do your peers do things that you find objectionable and finally this was iteratively revised and after the first few Interviews we added this question and that was and I always ended with it and to what extent if at all Do the physicians persuade surrogates to change their decisions? The these were all audio taped and transcribed and then analyzed using a qualitative analysis Myself a resident I worked with and Dr. Alexander so One of the most surprising things Was that physicians when I talked to them about their general approach? So they usually had family meetings already with an objective in mind That a lot of times it came down to time that physicians that I understand that in the literature We're supposed to have these facilitative meetings where we find out what people's Goals are but there's a limited amount of time And so we tend to only have meetings with strict objectives in mind One junior university attending put it this way Well, I think it's human nature to have some well the majority of time I have some opinion about what I think the optimal outcome would be in terms of the patient It's based on one the patient's condition to my experience of how similar patients may do and then I guess the third factor is if I know much about the surrogate or the family in terms of what their wishes might be and This propped up in many instances where physicians said they base their opinion about what the decision should be not first on patient or surrogate factors, but on The prognosis of the patient and their understanding of how previous patients had done now that was just that wasn't even in disagreement That was just their general approach then we started asking what they do when surrogates disagree with them Physicians said The first thing almost all physicians said was that they tried to find out why the disagreement was occurring They inquired with the surrogates to find out why the surrogate was disagreeing in the hopes of finding a way to come to an agreement then they cited Areas Sort of five domains where they saw the common causes and oftentimes they're sort of querying both through direct asking Listening and also sometimes nonverbal communication about why these surrogates might be disagreeing with them Physicians cited lack of trust of the surrogate in the physician as an important area of disagreement Surrogates misunderstanding and I'll get into misunderstanding and what that meant to these physicians in a moment Physicians sometimes perceived that surrogates needed more time to agree with them And so use things like time-limited trials or extended the decision-making into sort of a longer period of time and more discussions Physicians perceive sometimes that surrogates disagree because they were just having difficulty with the surrogate role and Physicians mentioned some various ways that they tried to help surrogates make decisions and change their decisions and Finally differences in values were sort of cited by physicians as sometimes a reason why a surrogate would disagree and it was the only Domain in which Physicians said if that were the case and really it was only certain values. It was religious values Religious values were a reason for for physicians to break off negotiations and let the decision stand But if surrogates disagreed in these other domains physicians that they usually tried to work with surrogates to correct these problems to gain agreement I'm going to address just two of these issues from sort of lack of time lack of trust in the physician was Sided by the majority of physicians although we never asked about it And I think the reason this is is because the physicians cited that they have no pre-existing Relationship in the ICU with either the patient or the surrogate and yet these are very important decisions to be made And so they said oftentimes surrogates don't trust us because they've never met us If that was the case of distrust was the case physicians said they tried to build trust over time One senior physician said I think it comes down again to trust trust availability So being there for questions and when families see engagement on my part I think they're more willing to spend time listening and trying to understand what I have to say There was a sense from the physicians that distrustful surrogates were not receptive To sort of the logical argument that physicians often tried to make about the goals of care And so physicians tried to engage in these areas some physicians even a few of them stated that if they sense that a surrogate was Distrustful they wouldn't actually have an end-of-life discussion at that time And instead they would put the discussion off until they built a more trusting relationship with the surrogate Physicians also saw addressing Misunderstanding as an important role for them nearly all physicians we talked to sought to correct surrogates Misunderstandings about patient illness about prognosis And also many of them mentioned what I put in reasonable expectations one physician and In a community practice that I think ideally you should look at it as your job to re-educate them in terms of what a Reasonable outcome is and what their reasonable decision should be Some physicians took it even a step further and said it was there These sort of viewed their roles also educating surrogate about suffering They said the many times the patients were sort of lying inert and it might not be cleared to the surrogates how patients were suffering And so they viewed it as their job to describe what the patient might be experiencing and how the patient was suffering now This wasn't done in all cases one physician said it's not only it's not that I only use that approach when he was Discussing suffering with people that I think we should withdraw support on it's that I never use that approach in people I think we should press ahead on and so we came to the final question in in our interviews and although most physicians described Feeling surrogates out and trying to find ways that they things that they could change to gain agreement when we asked about whether This was persuasion. We had a sort of deaf a clear split One physician said this once again with few exceptions the preponderance of these meetings are called to persuade the family to go along with the Decision and every word that's uttered by the physicians in these discussions is uttered with the intention of dragging them in the direction of the Decision the physician would like them to make Other physicians we talked to even ones who had Discussed What some ethicist might be more manipulative and coercive tactics said things like I don't view it as persuasion I don't like that word. I tend to think that I'm guiding them I'm helping them with the decision many of them are much more comfortable with terms like guidance and very uncomfortable with terms Like persuasion one said I don't like to think that I'm influencing them I think it's you know, yes, I frame decisions, but I think it's more subtle than that So, you know, the critical care associations have all come out and said that what physicians ought to be doing is negotiation and shared decision-making But I wonder is this what they had in mind You know It's not clear to me How surrogates experience This sort of these sorts of efforts on the part of physicians This also doesn't seem to quite fit anywhere in the in the current surrogate literature And I have some thoughts about why that is there may be two reasons one This is qualitative work and thus has qualitative limitations. There may be Some generalizability that may not generalize well to what other physicians are doing But the other reason I think it might not have been captured in surrogate decision-making literature is that one Much of the ICU literature is based on audio tape recordings of family meetings But if you look carefully at who they're able to record It's usually in many cases less than 50% of the meetings where people will even agree to sit down and have their conversations recorded The other thing is that physicians always know they're being recorded in these meetings And so maybe their behavior is better When they're being recorded than when they're not so for future directions and to see if this is generalizable We're planning a large national survey of critical care physicians and in it. We use experimental vignettes We vary the patient severity of illness and prognosis, but we also vary surrogate factors In other words, is the surrogate close or distant to the patient? Is it a husband? Is it a brother? Do they have a good or very poor relationship with the ICU staff? Do they have a good or poor understanding of the patient's condition and finally what is the reason for their decision? in other words to do religious reasons cause a physician to influence less and And at the end of these vignettes we asked physicians if the surrogate disagreed with your opinion about what was best for the patient Would you and to what degree would you try to persuade the surrogate? So in conclusion physicians we spoke with easily were called disagreements with surrogates Described a very targeted approach to managing disagreement Often sought to align the surrogates decision with the MDs and while they shared common approaches They called these approaches by very different names And I think more research is needed to confirm these findings and also understand how they impact surrogates Thank you very much So I'm going to review fragile X related disorders and the genetics summarize a study I'm doing on family communication about fragile X related disorders and identified future directions for this line of research So mutations in the fmr1 gene lead to fragile X related disorders These mutations are characterized by the length of the trinucleide trinucleotide repeats So less than 50 less than 50 repeats is what we consider normal 50 to 200 is what we consider a pre-mutation and over 200 is a full mutation Full mutations lead to fragile X syndrome, which is the most common inherited cause of intellectual disability Which is the newly accepted term for mental retardation and a third of these individuals actually have autism the pre-mutation People with a pre-mutation are at risk for two different clinical Conditions one is fragile X tremor a taxia syndrome or fax test and the other is fragile X premature ovarian insufficiency or fragile X POI fragile X tremor a taxia syndrome Is an adult onset neurodegenerative disorder similar to Parkinson's and one in 300 individuals with a pre-mutation will develop these symptoms fragile X POI Causes early menopause and ovarian insufficiency in the fourth decade of life and 20% of women with pre-mutations develop these symptoms I think it's important to say that these three Three conditions are clinically distinct So if some individuals with pre-mutations could have some learning difficulties or learning disabilities But they're not going to have cognitive impairment the level of intellectual disability and likewise people with fragile X syndrome Do not develop neurodegenerations nor do they develop early menopause? So There's no symptom overlap between pre-mutation related symptoms and full mutation related symptoms The inheritance of fragile X disorders is excellent Which classically means a grandfather can pass the mutation on to her his daughter Pass it on to his child and because boys only have one X chromosome. They're more likely to present clinically with it an interesting aspect of fragile X is that The mutation can change size it actually can expand so a pre-mutation can become a full mutation during maternal transmission So in a family who had fragile X it could look like this the grandfather could have a pre-mutation and have faxed this the neurodegeneration He could transmit the pre-mutation to his daughter She could have ovarian insufficiency and she could pass this on to her son And it could expand and he could have full mutation in fragile X syndrome so So each family each individual in this family could have a different presentation of a frat fragile X related condition and fragile X as you can see here is definitely a multi-generational condition So this led to the question. So what do families? How the families communicate about fragile X? So what do they tell people within their own generation? And what do they tell people in different generations about fragile X? So here we have a scum out of a family. So currently Families are made aware most commonly that fragile X runs in their family when a child is diagnosed So the child usually has developmental delays and within the ideological Ideologic workup of those delays the child determined to have fragile X syndrome The parents are notified by the physicians There's a carrier parent the one who actually transmitted the mutation to the child and non-carrier parent Which I refer to as the partner on the outer circle all the family members were vested in the child the darker circles Are the ones who actually are at genetic risk for either having a child with fragile X related Syndrome or themselves having a fragile X related syndrome. So that's again fragile X syndrome fragile X Ovarian insufficiency or fragile X tremor a taxia syndrome the light blue circles partner and partners family are individuals who have a vested Interest in the child but they themselves are not at genetic risk for having fragile X So we don't know how once the parents have this information how they disseminate that information To the other family members those at risk and those not at risk So what we know about family communication and fragile X is that parents were counseled to tell other family members about fragile X syndrome So once I made aware that it's in the family counseling recommendations about faxed us and fragile X POI are less clear How families actually communicate about fragile X related disorders is unknown how they communicate about the risk of having fragile X And their family is unknown and understanding these disclosure patterns could help us refine counseling guidelines So I undertook a study to identify factors that promote and inhibit Infra-familial information sharing about fragile X using qualitative methodology I did one-on-one interviews with family members of individuals with fragile X syndrome They were created from fragile X clinic parents and parent support groups in Chicago land and in St. Louis And we did about 55 of these so in our sample 76% were women and the majority were married highly educated and predominantly Caucasian 60% were parents and 29% were grandparents 90% actually knew their own fragile X status and the majority of those were pre-mutation carriers So what we found that there's several factors that actually promote disclosure and these factors could be broken onto different levels The relationship level the characteristics of the information recipient and also characteristics of the subject matter itself so related to Relationship emotional closeness was something that promoted disclosure So if you had a sibling who lived close to you that you are in good terms with and a sibling that lived far away that you are in better terms with Physical proximity didn't really play a role in who you tell even though they're both equal genetic risk You're more likely to tell the the relative that live a far away if you're on better terms with them Characteristics of the recipient that promoted disclosure would be female gender and being of reproductive age interestingly the people who commented on Reproductive age being important as a reason to disclose actually also had a sense of urgency about it So those are the people who also told their family members quickly without delay and Related to the subject fragile X syndrome Compared to fax test or fragile X POI were more likely the subject of the disclosure So the message that parents said was you could have a child with fragile X syndrome The message was less likely to be you could develop fragile X POI or You could develop fax test or your child could have those disorders So the pre-mutation disorders were less of a priority in disclosure than the full mutation or fragile X syndrome It also barriers to disclosure and we found them again on a similar level So partners family often was not told again the partners family was not told by the parent the carrier parent or the partner And the partners family is actually not a genetic risk. So they were not a priority To be to being told and also the information recipient if they had a different attitude towards disability than the parent themselves They were not told and these differences were related to age So older versus younger generations views of disability and also cultures of different ethnicities in the future I'm going to do Continue this analysis of also some subgroup analysis looking at mutation status looking at relationship looking at ethnicity and gender And also looking at facilitators and barriers of uptake of cascade testing So once somebody finally has information that fragile X friends in their family, what do they do that information? How do they decide whether or not they're going to be tested? Thank you. I gave a version of this talk to a group of primary care physicians several months ago and Before the talk some students and residents came up to me with sort of a menacing look saying you better not depress me with your talk so I didn't have a good response at the time But after listening to Dan so mace's talk on the principle double-effect I sort of wish I could have invoked the wall saying that it might be an unintended side effect I This presentation I first introduced the problem of declining career satisfaction in primary care and Next I'll briefly discuss some theories in the work motivation literature that address the topic of physician motivation and career resilience Though much can be said about this topic. I'll pay particular attention to the role of burnout in the sense of calling I'll then describe findings from a national Survey where we explore burnout and calling among primary care physicians or PCPs And then based on these findings. I'll conclude with some final thoughts in the studies implication for medical education career satisfaction is on the decline in primary care This graph summarizes some data from a Harvard longitudinal study of practicing PCPs from 1997 to 2001 and in 2010 We updated these findings utilizing the same survey item on career satisfaction We found that less than a third of practicing primary care physicians report being very satisfied with their overall career in medicine We found that less this is in contrast with physicians from various specialties whose career satisfaction tend to remain stable In the 40 to 50 percent range over the same time period This data confirms separate reports to describe a growing discontent in the field of primary care Recent studies suggest that dissatisfied physicians are more likely to leave the profession and discourage others from entering their field Moreover as dr. Reynolds mentioned yesterday that there are fewer us medical graduates and residents choosing fields in primary care This worrisome trend has led some to comment that primary care is on quote death row Given that good primary care is deemed critical to for high performing health care systems the plight of primary care in This country has generated heightened concern both in the professional and popular media That unfortunate patients like this one depicted here may soon be undertaking great lengths for a primary care physician I'm wondering maybe there will be some primary care doctors available on this planet The crisis facing primary care today is leading many to examine the various factors that motivate physicians to enter and remain in this field What motivates physicians? Theories of motivation divide work-related motivating factors into those that are extrinsic and Intrinsic to the job Explanations offered for the growing disappearance of primary care visitors have tended to focus on Extrinsic motivating factors for instance there has been much discussion around Salary and income differentials between primary care visitors and their specialty colleagues Other extrinsic factors include educational debt work hours work conditions and other lifestyle factors Some motivational theories however suggest that extrinsic factors are more closely linked to career dissatisfaction rather than career satisfaction for example a high salary Does not necessarily make work itself intrinsically satisfying But a low salary can lead one to feel dissatisfied about work Therefore these theories posit that intrinsic motivating factors rather than extrinsic ones promote a sense of fulfillment and meaning in work and Ultimately promote higher career resilience Some of these intrinsic motivating factors include opportunities for altruism self-expression intellectual growth and Opportunities to connect to others to work in community with patients or colleagues But physicians do face challenges in their career and one prominent obstacle is the experience of burnout Burnout is a syndrome of emotional exhaustion cynicism and a perceived ineffectiveness at work Burnout may prevent physicians from responding to the intrinsic motivations they have and thus pose a challenge to long-term career resilience Nevertheless, there may be other intrinsic motivators that sustain physicians careers even in the face of obstacles like burnout One of these may be a sense of calling In the work motivation literature calling has been defined as a sense of purpose or direction that leads an individual towards some kind of Personally fulfilling and or socially significant engagement within the work role Research and calling has found that those who view work as a calling are more engaged with their work Spend more time working and viewed our job is more central to their lives For physicians, it may be that having a sense of calling to pursue meaningful work Provides a strong enough motivator to persevere even in the face of challenges that lead to burnout In our preliminary exploration, we started by conducting a national study of Primary care physicians specifically to explore the issue of burnout in the sense of calling So in 2009 in 2010 we surveyed a nationally represented sample of 1504 PCPs from the AMA master file and among eligible respondents we obtained a adjusted response rate of 63% In the survey we included variables of career resilience in which we asked physicians Whether they regret choosing medicine as a career want to go into a different clinical specialty Intend to see fewer patients in the next three years or intend to leave the practice of medicine in the next three years We assessed burned out through a single item measure utilized in previous national studies of Primary care physicians for example burned out physicians marked statements such as I have one or more symptoms of burnout such as physical or emotional exhaustion To assess calling we asked physicians to to what extent they agree with the statement for me the practice of medicine is a calling As noted on the right side of the slide, we also include several other demographic and work related variables in our multivariate logistic regression models So what do primary care physicians overall think about their medical careers? 26% of US PCPs regret choosing medicine as a career 38% want to go into different clinical specialty 43% intend to see fewer patients and while 17% of US primary care physicians intend to leave the practice of medicine within three years Next we categorize all respondents based on their responses to the burnout and calling items and we created four Categories as described here One burned out physicians without a calling burned out physicians with the calling Physicians who are not burned out and do not have a calling and physicians who are not burned out, but have a calling So for example our data shows 5% 5% of burned out physicians who don't have a calling While 65% of US primary care physicians Report a sense of calling and no burnout This slide shows the percentage of primary care physicians among these four categories who regret choosing medicine as a career So first we see the burned out physicians on this side and the non-burned out physicians on the other And we see that those That burned out physicians to the left are more likely than those who are not burned out to report regretting medicine regret choosing medicine as a career However, we see that even among the burned out PCPs Physicians with a sense of calling here in red Are less likely than those without a calling in the gray to regret choosing medicine as a career And this is with a multivariate odds ratio of 0.3 after adjusting for other characteristics And although time does not permit me to present the rest of the data We also find similar trends with physicians who want to go into different clinical specialty who intend to see fewer Patients and leave the practice of medicine in the next three years Again, I have to mention that the cross-sectional design of our study does not permit definitive inferences about the about causation among the various factors but our findings do suggest that burnout and calling May be important variables to include in a future longitudinal study of physicians that Dr. far Kerlin Ken Rosinski and I are working to develop We hope that this longitudinal study will help us better address the relationships between burnout calling and various other factors in Physicians professional development in summary our study shows that primary care physicians physicians who report burnout are More likely to regret choosing at it medicine as a career One a different clinical specialty intend to see fewer patients and intend to leave the practice of medicine within three years However, having a sense of calling may promote career resilience in primary care even among those who experience symptoms of burnout Is burnout in primary care an ethical problem? One of the consistent themes emerging from the medical literature is a growing loss of meaning and intrinsic Personal fulfillment in primary care as well as the subsequent call to recover its intrinsic rewards Burnout may be a symptom of this loss For example researcher on burnout is finding that burned out workers Find their work unrewarding experience a breakdown in community Believe they are treated unfairly and are confronted with conflicting values So this has led some prominent researchers to describe burnout more accurately as quote an erosion of the soul In medical education the critical periods when medical students and trainees are at high risk for burnout namely During their third year of medical school and residency training are also the same periods in which their sense of idealism begins to erode as well So to counteract this loss physicians with a sense of calling may be drawing from other resources either internal or External to the profession that help restore meaning and intrinsic reward to their work even in the face of obstacles during their professional development Therefore efforts to understand and cultivate these intrinsic motivations may help attract and retain a new generation of Physicians particularly in an important field like primary care Again, I'll conclude by acknowledging my collaborators mentors and the organizations that support this work Thank you for your attention. Thanks. I'm Maggie moon and I am going to talk a little bit today about some work We're doing at Hopkins Trying to expand the empirical basis for ethics education So at the Berman Institute of Bioethics at Hopkins We have a program on ethics and clinical practice and a few years ago. We sort of Outline our own tasks and those are to develop and implement curricula for ethics education for the residents throughout Hopkins Which is I think they have 27 residency programs and probably 900 residents at this point Our focus was intended to be on everyday ethics and we really wanted to include some emphasis on the outpatient setting mostly because we felt Like that work hadn't been done effectively In addition to that we really wanted to expand the empirical basis for ethics education Because it really feels like To teach well you really have to understand why it is that you're teaching and I felt like as we looked at what people were Doing in ethics education, you know nationwide. It wasn't really clear that there was a really strong basis for the curricula So we really wanted to look again and see if in developing these new programs at Hopkins We could do it a little differently and think a little bit more clearly about the what and the why we were trying to teach And finally the hard part of this is to evaluate ethics education happily I don't have to talk about that today, but I would be happy to come and talk about it some other time when we have some answers So because we had a chance to sort of start this de novo we decided to take a pretty formal curriculum development approach to Ethics education for the residents at Hopkins And so these are the six steps of curriculum development for medical education that we were really focusing on so today I'm going to talk very briefly about The first two steps and show you the sort of the scope of our projects in trying to develop some empirical basis for ethics education So the first question is what is the general needs assessment? What is the problem and it looks like we understand that for that ethics and professionalism education is required in all residency programs in the US but The curriculum is not specified so all the people that talk about ethics education never really tell you what it is That you're supposed to be teaching and it turns out that whatever people are teaching right now may not be that effective So there's all sorts of older data about moral judgment declining during training There's a lot of data about the how the hidden curriculum belittles ethics and any of you have listened to sort of Ward rounds or listen to people talk about ethics issues. You can hear of how the hidden curriculum sort of Puts it down a little bit one of our very famous folks at Hopkins has been heard to say way too many times ethics is stupid And when the residents hear that stuff, they have a really hard time trying to figure out what they're supposed to do with it Turns out that residents also report some dissatisfaction with their ethics education Saying that the training was inadequate. It doesn't help them identify and resolve moral distress issues So I think the problem is a large one if we're going to keep teaching ethics for residents We need to make sure that we're trying to address this in a way that's at least it's at least effective We also understood that there was a relative dearth of literature on on both ethics in the outpatient setting and also ethics Current current literature on ethics in the inpatient setting. There's older literature on ethics in the inpatient setting particularly in internal medicine but really not very much about Empirical work on the outpatient setting or the inpatient setting right now Several authors have written about the need for a more epidemiological approach to ethics education. So that's what we're trying to get done Okay, so our current projects and so what I want to do is explain our current projects not to give you the details of the data I'll show you some of the results but really to give you a sense of how broad these projects are and To see if other people have ideas about other Approaches to the same sorts of questions. So we have a general project a validation project I'm sure some people in this room got emails from us about looking at the domains for ethics education things that we ought to be teaching residents and Validating some questions for an ethics knowledge survey and then probably more important to this whole issue is the notion of developing a better Epidemiology of ethics in primary care practice and also in patient practice So I'll talk about each of these studies briefly But the validation project where we're trying to validate the domains for ethics education started with our own question Here's the things that we normally teach when we're approaching ethics education for the residents But we weren't really sure if anybody else in the country would agree that these were the right things We were sort of making these up off the top of our heads things that we understood to be most important But they really weren't even validated on a national perspective So we sent questions to a group of medical ethicists in the US and asked a couple different things one We listed the 11 domains of ethics teaching that we felt were most common The things that we are most commonly teaching and asked them to identify the relevance of the 11 domains We sent out none of them were scored as at least Really important or critically important. So those are listed there And I think most of those things you guys are all familiar with their things that we are You know, we all teach all the time probably so there was a lot of agreement turned out there's a lot of room between ethicists in the US about what what the relevant domains for ethics education, but the and then based on that we also developed a Pre and post test so we validated questions based on based on each of the domains that this group of ethicists agreed that was important We wrote pre and post test questions and sent those questions back out to get validated So we've developed this sort of pre and post test knowledge survey with questions that have all scored high on the validity and the quality realm We're just piloting that right now. It'll be interesting to see if it ends up being a useful pre and post test I think sort of survey tests or questionnaires about ethics knowledge are fraught with difficulty Okay, so the more interesting studies This is one of the studies we did a couple years ago as an observation project in the outpatient pediatric clinic So this was really, you know, sort of the most basic qualitative analysis project We sat still and listened very carefully for many many hours to hear what Residents said to their preceptors about the cases they were seeing in their outpatient clinic And we listened and just wrote down everything that sounded anything like ethics and then we took all the information You know 70 hours of direct observation transcribed all that data and coded it as through a qualitative analysis program And what we're looking for is anything we talked about ethics issues in this one as anything that was looked like a conflict About what ought to be done that appeared to arise from competing moral obligations So that's sort of a very specific definition of ethics very principle based it was Gets back to what we're trying to teach it sort of it works Well, when you're talking about teaching to look at ethics this way So it is accepted as sort of a limited approach to ethics From that data the themes that were generated So these are things that the residents are talking about with their preceptors as they're seeing their patients in continuity clinic So the themes that came up promoting the child's best interest in complex and resource poor home and social settings Part of that is specific to where we work Baltimore is a very It's a very urban Setting and a lot of our patients are very poor So this sort of complexity may not pertain to all training programs certainly is a big part of ours Managing the therapeutic alliance is very important protecting patient privacy and confidentiality Balancing the dual rules of the learner and the provider And then learning to use professional authority appropriately So the ones that I have a asterisk by are those that are not commonly discussed in the literature on pediatric ethics So the managing the therapeutic alliance is You know a big deal in pediatrics Protecting pavement private patient privacy is a big deal on all sorts of ethics another Approach to developing a better epidemiology of ethics and pediatrics at least is a narrative project that we've been conducting with the Peds residents for several years So the residents in pediatrics write about ethics early in their first year and in their internship year and then again and Then second year and the idea is that they're going to talk about their personal experience with a case And they're going to write about the case and I don't give a whole lot of direction about what to write about I just ask them to tell me what the case was how they resolved what they learned from it what they think about it Why they think what they think so we looked at two things there One was just a content analysis to look at the themes from the cases presented in the residents writing to see if it matched The themes that we saw in the outpatient clinic and themes that were expressed up in other places And we also looked we're trying to develop a way to monitor to measure changes in moral reasoning From and more from ethical reasoning and ethical sensitivity from time one to time two So this is actually a really fascinating project really difficult to get done Well, but these are the eight domains that we use to see if we could look at the way the residents wrote about their own Experiences as interns and then again late in their second year to see if we could see a change So in the narratives the themes that we that the residents wrote about so the things that the residents commonly wrote about a lot of This is inpatient not outpatient But it's duty to respect autonomy which ought not to be a surprise to anybody the therapeutic alliance again Concerns about futility specifically in the ICU said in the NICU and the PICU Concerns about providing suboptimal care which ended up being somewhat related to the notion that It's that conflict between being a learning provider residents worried a lot that the care that they were providing was suboptimal Just because they weren't very good at this yet, and then also questions about fair allocation of resources Measuring the changes in ethical sensitivity and reasoning we identified one that there was absolutely no evidence that there's any decline in the residents capacity for ethical reasoning between time one and time two and Specifically, we noticed that there were significant gains in their use of professional and personal values and the way they explain them the way They related them to the patient's values It also turned out that I think our rubric for analysis needs work It's a very sort of it's a difficult thing to feel like you're doing correctly So we'll continue to work on that as time goes on Again, this is all about developing the sort of this expanded epidemiology for us for ethics We have a couple of inpatient or one new inpatient project going on and that is Again the same observation process, but this is the inpatient ward teams We observed a month worth of inpatient rounds So at least well over 90 case discussions were observed I have a cold this is probably being a pediatrician in the fall It's hard not to have a cold and in addition we did in that in that interviews with the residents and some of the faculty attendings So that data is still being processed, but it's going to be the same sort of question to see does what happened on the inpatient experience Match what happens in the outpatient setting is it match doesn't match at all with what we teach So we also have the similar project in the outpatient clinic for the internal medicine group So here it happens. We actually have two separate Internal medicine clinics with two separate sets of faculty and they actually teach very differently So it's interesting to look at these two clinics and do the same direct observation listening to a residence talked about Ethics with their preceptors talked about cases with their preceptors pulling out the ethics issues So we did the same thing we analyze the field notes and the tapes Through a qualitative analysis program looking for ethics and professionalism content again here defined even more broadly than with the pediatrics The other thing we looked for here that we hadn't looked for before Was whether the preceptors were identifying and teaching ethics issues implicitly or explicitly or not at all So in that study 81% of the cases that we have that we listened to had ethics and professionalism content Interestingly though of those 81 81% of the cases only 18 in only 18% of the cases did the attending actually explicitly identify the ethics issue So they're happening. They're very clear that they're happening But it's very it's fairly rare that the attending will stop and say this feels like a values issue or an ethics issue Or let's look at the implications of this from an ethics point of view And even fewer than those involved explicit teaching about ethics On the other hand though when we talked to the preceptors about what they were thinking they revealed a very high degree of ethical sensitivity and insight So for some reason they're hearing it. They're seeing it. They're just not teaching it From that observation the themes that we identified were problems within the between the physician and the patients of the docu patient Relationship related to communication shared decision-making and relationships Again the resident is learner came up with it as a big problem creating issues of conflict and moral distress for the residents and then physician system issues came up in the internal medicine clinic not So much or differently than it was in the Peds Clinic But physician system interactions external influences as like drug reps the presence of drug reps And physician frustration related to the system which I think sort of goes along with what dr. Youn is saying So that was a very brief run through what I wanted to show was sort of what we're trying to get done here is develop a new Epidemiology of ethics in clinical practice specifically related to what residents ought to be learning And what we are capable of teaching so it looks like we do need to continue this sort of work I think we need to further expand the empirical basis for ethics education what we notice also Hopkins is an unusual place I mean, it's a very specific sort of training program It's a very specific sort of environment so the things that we see at Hopkins may or may not hold true in other institutions other settings So we'd like to see this worked out in other places We really do feel very strongly that domains were teaching should reflect the experience of the learners and should be connected to the goals of Education so I just put on here at our goals the goals that we have for clinical ethics education Which are drawn pretty directly from dr. Pellegrino's article in 1987 article hero Which I think was just brilliant in sort of describing what people ought to be learning So I want to thank the folks I work with and I want to thank you all very much I'm going to start off by saying thank you so much for having me And allowing me to give this talk today today I'm going to talk about how different conceptions of risk are used in the Oregon market debate First I'm going to talk about the Oregon market debate and what I'm pertaining to is liver and kidney transplantation For the remainder of this talk as we all know there's a shortage of organs in this country There's currently over 16,000 patients who are on the liver transplant waiting list and there's over 86,000 patients who are waiting at kidney This is right now. This is there's initially started with deceased donor living transplant But now there's living donor transplant for both liver and kidney transplantation and initially living living donor transplantation Was thought to be a means to shorten it to make this gap a little bit smaller And as we can see with these very very long waiting list This hasn't happened currently in our country There's sort of two forms of living donor liver trans living donor transplantation both for livers and kidneys I'll refer to direct donation as I have a family member or friend that needs a kidney And I'm just going to go ahead and offer them my kidney same thing for a part of a liver and then non-directed Which means that I'm just going to give up my kidney for whoever happens to be the next person on the list Both of these do happen. Of course direct donation happens a lot more frequently In this country Because we have the shortage with both living and deceased donor donation A lot of people have proposed both monetary and non-monetary incentives in order to increase the supply of living donor Organs, but I'll say that the market for organs when I say market I'm literally talking about buying and selling organs is Illegal in almost every country worldwide That doesn't mean that this doesn't happen because it turns out that it happens quite a bit So it's estimated that about 5 to 10 percent of all kidneys that are transplanted in the world what worldwide Occur on the black market. So these are kidneys that are bought and sold There's records of 2,000 kidney transplants alone in Pakistan that were bought and sold This actually happens in our country, too Now we don't have a at least we don't know of a market that we have but we do have plenty of patients that have been Documented to go overseas And and buy a kidney. So we do see that a very interesting study that was done published in jama in 2002 Took people in India who had sold their kidneys and interviewed them and talked about some of their motivations and some of their health outcomes After their transplant and these it turns out that the patients that and not surprisingly the patients that sold Their kidneys tended to be very poor people and the reason why they did it the vast vast majority of time was just to pay off Decks that they had and when they followed these patients after the sale of their kidney and how they were doing after them after A lot of follow-up questions 79% said that they would never sit recommend to anybody else selling a kidney again I'm not showing the data here, but their financial status was actually worse off a lot of times their health status Of course was worse off. So these were these were unhappy people that participated in this market Taking studies back to our country this was a survey that was published last year and Of the American Society of Transplant Surgeons and this was looking more at reducing barriers to transplantation So and I'm talking about just living donors obviously And what kind of things we could do to maybe get people to donate their organs a little more and sort of reduce these Barriers and whether the transplant physician now This was a survey of transplant physicians Physicians whether they were for this and whether they thought that that would be okay and as you can see I have a pointer but Things like guaranteed health insurance guaranteed life insurance and income tax credit. This was widely supported by Transplant physicians. They thought that this would probably be a good idea to help people donate But the line was drawn at cash payment Okay, so we saw these numbers drop off considerably when you took it from guaranteed health insurance to give them Write them a check further for their kidney. That was a different story and a lot of people said Most of the physicians only 10 10% strongly supported about 10% support and the rest were either neutral or or against this So we wanted to explore this issue a little bit further What we wanted to do is understand the attitudes of physicians members of the transplant community and talk to them a little bit about kidney transplantation, but we also wanted to add living donor liver transplantation because We're starting to see more and more of those as well and talk to them about directed donation Talk to them about non-directed donation and for those who were interested in legalizing markets We asked them to To what their thoughts about those were as well And we wanted to really besides just knowing if they were foreign against it What the really the purpose of the study it was to look at get some insight into the reasoning behind Their stance on this issue and why they were either forward or against it We really wanted to get at this issue of reducing barriers to transplant verses Where does that go and where do you draw the line between that and undo inducement? A few details about our survey This was an email and a mail survey that was sent to hepatologists nephrologists and liver and kidney transplant surgeons through various Organizations here in the United States Some of the questions we asked we asked about organ markets for liver living liver and kidney donation We asked why they supported or opposed these markets and for those who supported the markets We actually even went a step further and asked them about some proposed financial structures for the market that they thought would work Well, we had a 50% response rate for our survey a little more than half for transplant surgeons The West rest were hepatologists and nephrologists and 58% of our respondents were in practice for more than 10 years This is a graph that's going to depend a table that's going to depict some of the initial Questions that we asked when we asked about their attitude regarding donation non-directed donation and organ markets and what you can see here is that Our first question with whether adults should be allowed to directly donate an organ The vast majority 98% for kidneys and 95% for livers thought that that would be a good idea So most people and this happens all the time in our country Most people were okay with this when we moved over to non-directed donation again Donating an organ to an unknown recipient an unrelated recipient 94% were in favor of this for kidney a little less for liver 67% but still the majority thought that this would be okay once again, and we saw these numbers Drastically drop off when we talked about a market. So the voluntary sale and this was the exact question used in our questionnaire The voluntary sale of organs by healthy adults should be legalized in the United States Only 20% agreed with this for kidneys and 10% agreed with this for living donor liver transplantation So we wanted to go a little bit further and talk about that what I mentioned before talk about sort of the reasoning behind this And we talked about and so we took the patient we took the respondents that either ejected or supported and we asked them More questions. So this is the some of the data from those who objected to an organ market And the most common reasons why they objected were poor potential exploitation of the poor and risk to donors And interestingly some of the things that we thought might be as important really didn't turn out to be that important The sanctioning of sale on diminishes human dignity was far below risk to donors And some of these other things so really the big picture here was it was exploitation and risk to donors were what we kept seeing With the objectors to organ markets Switching over to the supporters when we asked them similar questions Interestingly this concept of risk came up again, and this was somewhat of a surprise to us So the reasons why they supported it was they're talking about risk as well So they say the risks of long-term problems after a partial hepatectomy or an infractomy are very low And they talk about the short-term risk of morbidity and mortality from the surgery being low, too And what we sort of thought our hypothesis was this is going to be an issue of autonomy We saw autonomy was farther down the list. So this wasn't really what was going on autonomy to pen potential vendors scored lower and the question that we ended the statement individuals have the right to Dispose of body parts as they wish what was very low. So this was not something that was a big thing So to wrap things up. I'll make a few points in my discussion We found that transplant physicians were in favor of directed and non directed Living donation for kidneys and partial livers for transplantation. This wasn't very surprising. This is going on in our Country every day previous data has shown that physicians may be in favor of reducing barriers to transplant But the line was drawn and I think it was drawn fairly sharply That the vast majority of our respondents were opposed to the legalization of an organ market as a means to increase available organs Surprisingly to us donor risk turned out to be a very important issue and even more surprisingly It was the issue on both sides of this So both of the sides of this both the supporters and the opposition were both saying that risk was the reason why they either supported Or were opposed to this issue and and what we were thinking and what we're hypothesizing is that these sides just have different Conceptions of risk and not only what the absolute risk is but what's an acceptable risk and what's okay to put a donor through and you Could see when they're talking about operative risks or donor risk. Maybe they're just thinking very along very different lines And for the majority of those opposed to risk I think it brings up some extremely interesting points and points that deserve some further study So those that are opposed to organ markets does payment And now we're talking and framing it as risk which changes everything But does payment for risk does this is this what actually represents undo inducement and is this the reason why? They're opposed to it and also we go back to this concept of the autonomy of the donor So if you're going to say that someone can't sell their kidney You are in a way of restricting their autonomy you're telling them they can't do something with their own body But does the moral agency of the physician does this justify overriding the autonomy of the donor? And this is something that I think is still subject to Bayton and deserves further study So I wanted to also thank dr. Siegler for inviting me to this conference and thank the McLean Center very much And also to thank Laney Ross for all of her support and help for this project And if you're interested this was published in April of this year and here's the citation if you guys would ever like to Read more details of our study. Thank you And so I would just request questions brief and We'll try to have responses similarly brief so that we can have some good back and forth here. So I saw a few hands up Yes Thank you. Yes, right here You can go into it One of the things in our survey that we do is we split the survey and we actually rather than ask whether they persuade or whether It's rhetoric we talk about the behaviors that the physicians really behaviors of rhetoric and we ask one group How frequently if there's a disagreement you employ these and then we ask the other group to judge the acceptability of that And so we ask them sort of is this ethically correct and we'll actually be able to then look at their demographics Match the demographics and get a sense of how physicians both practice some of these behaviors And also how they view the ethics of these behaviors as well Thank you very much, please join me again in