 So we're going to start our second substantive talk. For those of you who are keeping track, we're on papers three and four. This is going to be talking about shared decision making and the doctor-patient relationship. Our first speaker is going to be Bob Levine. Dr. Levine is a professor of medicine and lecturer in pharmacology at Yale University School of Medicine. The director of the law, policy, and ethics core of Yale University Center for Interdiscipline Research on AIDS, and co-chair of the executive committee of Yale University's interdisciplinary bioethics project. He's a fellow of the Hastings Center, the American College of Physicians, and the American Association of the Advancement of Science. A member of the American Society for Clinical Investigation, and a director of Primer, which is public responsibility in medicine and research, as well as past president of the American Society of Law, Medicine, and Ethics. Without further ado, we're going to have Professor Levine discuss shared decision making and the doctor-patient relationship. Peter Ubel, I saw you before, if you can join us up here, we're going to do all three talks, and then we'll open it for conversation. Thank you. Thank you. It's a great pleasure, a great pleasure for me to be here today. There's so many old friends, so many familiar faces. It's wonderful to be allowed to participate in showing our honor, our respect for Mark. Usually when I see Mark, I'm in China. Mark and I go to China about twice a year, and have the good fortune of visiting a different city each time. But it's good to be with you in Chicago, too. What I'm going to do is something that everyone else has done on the program so far. And that is to give evidence of respect for Mark Siegler. Now the way I'm going to do this is to show a way that Mark's work has had an important influence on me, given shape to some of my own work. Secretly, what I'm looking for is that this time next year, Lainey will include me on the slide of ex-students of Mark Siegler's, and put a pin in the map for my location in Connecticut. I'm going to comment on Mark's paper, The Nature and Limits of Clinical Medicine. Very few people know about this paper. And the reason for this is that it cannot be retrieved through electronic indexing services. Therefore, if you don't know exactly what you're looking for, there is no possibility of finding it. I will say that some of my favorites among my own writings are similarly buried in places where they cannot be located. The paper I'm going to talk about, Mark's paper, is an elegant piece of work. And the part I want to focus on is his model of the formation and the maintenance of the doctor-patient relationship. It's a phenomenological model, consisting in four moments. I'll just mention the moments now. I'll have a bit more to say about each of them soon. We first see the pre-patient phase. Then the patient or the person goes to the doctor and they engage in a moment called data-gathering and reduction. The purpose of this is to make a diagnosis. If a diagnosis is made, the doctor will say, yes, this is a problem in clinical medicine. And at that point they enter into the third moment, the physician-patient accommodation. Now we must determine whether this patient will become this doctor's patient. And then finally we have the mature doctor-patient relationship. Time constraints, which seem to be more or less constraining today, will mean that I will only be able to give you a small sample of Mark's thought on this topic. I hope some of you will be moved to get a larger sample after the meeting. What I'm going to do is talk about a question that was put to me in 1990. I was asked to write a chapter for a book, another one of these places that no one will ever hear of it or see it, because it's not retrievable either. I was asked to address the question, do doctors, do physicians have a duty to treat patients with AIDS? This is an astonishing question. Even in 1990 it was an astonishing question. Many of you, though, will remember the intensity of the debates on this issue. For the younger members of this group, this may just be a quaint bit of history. The question in the form it was asked had not been asked since the great plagues of earlier centuries. The questions included, must I risk death? Do I want to become known as a plague doctor? Those who became known as plague doctors didn't have any patients other than those with the plagues. I did not attempt to answer this question in my chapter. Rather, it's often said that people in ethics never answer any questions. They just try to clarify. As a professor of medicine, which I was when I turned to medical ethics, with the passage of time, I guess it was around the mid-1980s, people said to me, well, you really become an ethicist. You don't answer any of our questions anymore. What I tried to do instead was to offer an explanation of why such a question was being asked. My conclusion surprised me. I set out to answer this question and came to this conclusion. AIDS has not only had an extensive and troubling effect on the doctor-patient relationship, it has also highlighted some of the shortcomings in our capacity to develop a stable social consensus about what the doctor-patient relationship ought to be. I will now take you through Mark Siegler's unconsented collaboration in my project. In the pre-patient phase, the person notes that not all is going well. In this phase, this person has the authority to assign meaning to the symptom, to the feeling of unwellness, and also to decide who he might consult for advice on dealing with this symptom. Very often, the power to do this becomes a matter of negotiation with a member of the family, with a colleague or a friend. What the person is driven to do is to seek legitimation of his or her entitlement to the sick role. Now I'm referring to the sick role as it was classically defined by Talcott Parsons. Reading now from my writings, in our social system the power to ascribe meaning to disturbances and to choose how to deal with them often becomes a matter of negotiation. For example, I may say to my colleague that I cannot do my share of the work today because I am very tired. I may go on to explain that I'm tired because I stayed up too late last night or I'm worried about an ailing relative and this explanation will probably satisfy my colleague. However, if my lassitude persists, my colleague is likely to become less and less accepting of my explanations. At some point, she is likely to suggest that I consult a physician. This may be at least in part an expression of concern for my well-being, but it is also likely to represent an exhortation to secure legitimation of the sick role. What she is saying is this, you can't use tiredness as an excuse any longer unless it's due to some illness and that can only or at least best be decided by a doctor. Some not so subtle coercive pressures are often as effective as an ambulance in moving people out of the pre-patient stage into the office of a physician. Now, once the person is in the office of physician, we enter the second moment and that moment is what Mark calls data gathering and data reduction. Here we see the doctor perform the maneuvers and procedures that are designed to yield a diagnosis. There's the history, the physical, laboratory tests and so on. If there's a diagnosis, then the doctor proclaims this a problem of clinical medicine. Now consider the patient who's seeking legitimation in the sick role. Our tired person may return to his colleague after this first visit with the doctor and say, my doctor told me that tiredness is due to an iron deficiency anemia. All I have to do is take these pills and within a week or so I should feel better. This is a very happy outcome for all concerned. The person who was now called a patient is excused for a while with full expectations of recovery. Suppose instead he returns from the doctor's office to report, my doctor says there's nothing wrong with me. I'm just not getting enough sleep. I'm staying up too late moonlighting on another job. This person is likely to be seen as irresponsible, not living up to his social obligations. Consequently, he might consider not giving a full account of the physician's evaluation to his colleague. But whether or not he does, the desired collegial relationship is probably in jeopardy. Suppose the diagnosis is HIV infection, what will he tell his colleague? This is particularly problematic if, as is so often the case. His colleague does not know he is in an at-risk group. There is a high risk of jeopardizing his collegial relationship no matter what he does or does not tell her. She may have groundless fears of infection through casual incidental contact with him or with things that he has touched. She might recoil from association with undesirables such as gay men or intravenous drug abusers. Recall please that I'm talking in 1990. She may assume that he is such an undesirable even if he was infected through a blood transfusion. She may believe that the legitimacy of the sick role is tarnished if the disease is self-inflicted through freely chosen behaviors. She might shun the HIV infected gay man but not the so-called innocent victim with hemophilia. Such misconceptions about the nature of infection and attitudes about the social worthiness of the infected or those at risk for infection, though unwarranted, are widely held. Persons in at-risk groups aware of these benighted attitudes and false beliefs may for this reason choose against consulting physicians. Legitimation of the sick role as a motivating influence is not among the benefits they may confidently expect. Unlike the diagnosis of iron deficiency, which has the effect of preserving a desired relationship, the diagnosis of HIV infection may destroy it. Let's move on further into the second moment on the topic of confidentiality and reporting of positive results to state authorities. Confidentiality is, of course, crucial to the formation and proper functioning of the doctor-patient relationship. It's a central point in the oath of Hippocrates. In modern times, the ethical obligation to maintain confidentiality is given the additional force of law. Given such assurances of confidentiality, the typical patient feels free to bear all with impunity. Whether he would feel so secure if fully informed about medical confidentiality, which Siegler has called a decrepit concept, is beyond the scope of my discussion. The point is that he does. In contrast, the person at risk for HIV infection has been put on notice by society that he must be very wary with regard to medical confidentiality. Suppose he is diagnosed as having HIV infection. In many states, the doctor is required to report this to public health officials. Such reports may be followed up by contact tracing. Now, although public health officials are bound by confidentiality laws, the contact is not. Thus, it may become generally known not only that the patient is HIV infected, but also that he is a member of some stigmatized group. The consequences of sharing such information can be very grave indeed. Next, we'll consider the blood testing. Before the advent of AIDS, physicians never got informed consent for blood testing. But now, for HIV antibody testing, full-fledged informed consent is required by law. Moreover, informed consent must be supplemented by pre-test counseling and whether the results of the test are positive or not, post-test counseling. Both the physician and the patient cannot fail to be aware of how different this is from all of their previous experiences. The patient who arrived in the doctor's office expecting advice and assistance and if necessary to be taken care of is instead immediately alerted to his right to be left alone. This is a most stressful and unfamiliar way to begin a doctor-patient relationship. Uh-oh, e-mailing seems to have amputated at one point. In any event, the physician may find herself in a conflicted position. A recommendation to a patient to have an HIV antibody test done is necessarily more complicated than advice to lose weight, to have a barium enema, or even to have open heart surgery. The physician does not experience a refusal to have a barium enema as a potential threat to her personal well-being. She may proceed to persuade the patient to accept her recommendation with an untroubled conscience knowing that she has only the patient's interests in mind. By contrast, persuasion to accept antibody testing is much more complex. She and the patient may each suspect that her motivation is partially, or primarily, a concern for her own well-being. Even if it is not, she may be concerned that the patient thinks it is. In a sense then, these people are approaching each other warily with unspoken concerns about the other's willingness to relate honestly and openly. Now we see that blood and body fluid precautions with each blood test is required. Many physicians said that they found this very burdensome. Many patients said that they found this most alarming. In case they weren't alarmed before, their alarm was increased when they noticed that after the blood test, the doctor inserted the needle and a device designed to destroy it. This is without precedent in medicine. Now let's move into... No, we're still right. Now let's reflect on what we have noticed so far. This is unfamiliar ground for both the doctor and the patient. Both the doctor and the patient are on guard. The physician is beginning to wonder, is it worth investing all this time and energy in blood and body fluid precautions and informed consent in pre-test and post-test counseling for a simple blood test? Is it worth dealing with these conflicts of loyalties in the management of private information? Is this my duty? Now we'll move into moment three, the physician-patient accommodation. In moment two, the physician concluded that the patient had a problem in clinical medicine, which therefore merited the attention of a physician. In moment three, the patient and the physician negotiate whether this physician will be this patient's doctor. The patient considers such factors as the bedside manner, the appearance of competence, the display of various diplomas on the wall, the length of the queue, and in 1990 whether or not the fees were excessive. Maybe perhaps also this year. Also in the third moment, the physician has to ask herself some questions. Am I technically competent? Now in general, what that meant is that the physician had to decide whether she had the qualifications to give the most expert attention to the patient given the diagnosis. With the advent of the AIDS phenomenon, we see a new spin on the requirement for competence. According to the American Medical Association at the time, technical incompetence is the only ethically valid reason to excuse a physician from the general obligation to provide medical services for HIV-infected persons. In its 1988 statement on the matter, the key sentence is this. A physician may not ethically refuse to treat a patient whose condition is within the physician's current realm of competence solely because the patient is seropositive. At the time, there were some physicians who wished to evade their responsibilities to seropositive patients on grounds of fear or prejudice or emotional inability. Some of them apparently chose to remain technically incompetent to omit HIV infection from their current realm of competence in order to acquire a socially acceptable excuse for their avoidance of HIV-infected patients. The next question is, is the quality of interaction such that it might undermine my ability, my capacity to help this patient? I want to read you just the closing lines from this very long section where I reviewed some of the published commentary of studies of relationships with HIV-infected persons. It is now worth reflecting on the power of the language that's been used to describe so many of these patients. Hateful, despised, self-destructive, entitled demanders. Some of these are the terms that physicians use in the literature of medicine. Others are terms that social scientists use to describe the attitudes and behaviors of the physicians. The language itself creates barriers to the accommodation that are a necessary prelude to the physician-patient relationship. And finally, can I agree with this patient about the goals of the therapeutic relationship and the means to pursue them? Now, at the point that we would move into moment four, the mature physician-patient relationship, I want to stop to sum up. Although I had not attempted to answer this question, I have suggested that an affirmative response does not help mitigate any of the problems that caused the question to be asked in the first place. One can assert a duty to treat, but one cannot argue coherently that there is a duty to be unafraid. One cannot coerce empathy or even sympathy or any of the other feelings or attitudes that are essential to the development of caring relationships between physicians and patients. AIDS has not only had an extensive and troubling effect on what the doctor-patient relationship is, it has also highlighted some of the shortcomings in our capacity to develop a stable social consensus about what it ought to be. I want to close now by telling you that I hope that I have illustrated to your satisfaction that Mark Siegler provided us with a powerful tool for the description and analysis of the doctor-patient relationship. I also hope that Mark will think that I used his tool well. Thank you very much. Thank you very much. Our next speaker is Professor John Wenberg. Until 2007, Jack Wenberg was the director of the Center for the Evaluative Clinical Sciences at Dartmouth, which he founded in 1988, as well as the Peggy White-Thompson Professor of the Evaluative Clinical Sciences and Professor of Community and Family Medicine. Dr. Wenberg received his MD from McGill University and his MPH from the John Hopkins School of Hygiene and Public Health. Dr. Wenberg and colleague Al Mully are co-founders of the Foundation for Informed Medical Decision Making, a nonprofit corporation providing objective scientific information to patients about their treatment choices using interactive media. Dr. Wenberg. Thank you very much. I have a view slightly of an outsider here in the sense that I only came later in my career to know Mark and to know the fine work that's been going here. But it became a synergy immediately because the thinking that Mark had been going to in the papers that I'm reviewing today paralleled very directly the experiences that we had coming from a completely different point of view. My background is as an epidemiologist and I've been working as what I sometimes call a medical care epidemiologist, making the system itself the target of epidemiologic inquiry. And in that process, we came across what we call the practice variation phenomenon, the fact that the incidence of common surgical procedures from one community to another varies to an extraordinary degree. We're talking five, six, seven fold from region to region. And over the course of a long series of empirical studies of beginning with practice variations, looking at the underlying reasons for it, identifying the fact that variations occurred sometimes because physicians disagreed on the theoretical as the evidence for a particular intervention. And finally coming to the conclusion that the really important issue that had not been on the table was that patient preferences had been ignored because surgical procedures, most elective surgery, in fact by definition a surgical procedure has an alternative way of treating someone. And so the choice between the option A and option B became the most important cause of the practice variations. This was preference-based decisions that were going on from place to place that were essentially not the property of the patient, but rather the opinion of the physician. And that's a strong set of statements, but there's a lot of empirical evidence behind it now. And I want to take this opportunity here to, first of all, to look at the origins of the concept of shared decision-making, as it was reflected in Mark's paper, but also to give you a quick overview of the empirical evidence and also the progress that's been made that I think now represents the opportunity for the ethnic community, if there is a right way to describe that community, and the epidemiologic community that's been looking at outcomes research to come together because there are some very practical tools now available for actually intervening in a way which I believe it represents the normatively correct conclusion of what the practice variations mean and what the remedies are. So the, oops, didn't like that. The goals, that was a picture of Mark's paper. I just said it was too dense to be put on the screen. Sorry, Mark. But basically the goal of this paper was to develop the argument that if moral certainty is to be found in medicine, it's to be discovered in the practicalities, the peculiarities of the physician-patient relationship, a viewpoint that, as an empiricist, I wholly subscribe to, but also that the purpose was to propose a new model of a doctor-patient relationship a bilateral dynamic model that avoids the unilateral static notions of either a physician-dominated paternalistic model, which historically certainly is where we all began, or a patient-dominated consumerist libertarian model which was a model maybe that was more important in the 80s than it is today. And the evidence that we see in the data is that the paternalistic model still is the dominant model in terms of the practice variations. The new model is based on accommodation that, and I'm here directly quoting, that I propose is a bilateral one in which the moral and technical arrangements of a medical encounter, and by the technical arrangements, I presume we mean here the prescription, for example, to have surgery, should be determined by a mutually, voluntarily and autonomously by both the patient and the physician. This is a very nice definition of shared decision-making. Although you didn't call it that in this paper, I was looking for that. Now, the accommodation process depends on all of the particularities of the encounter. This is again from Mark, and I'm starting with the most important in a sense, the nature of the patient involved, his personality, character, attitude and values. And here is where I want to introduce you to some of the contemporary information that establishes the extreme importance, I think, of taking patient preferences into account. This is a paper that comes from Canada by Jillian Hawker on a group of orthopedic surgeons who were stimulated by the fact that there's striking differences in the incidence of knee replacement and hip replacement between Canadian regions to actually find out why this was occurring. And so, being good physicians, they started out with the assumption that we need to define what need is, and they developed evidence-based practice guidelines that said if a person has a level of pain above X in terms of a survey instrument, they're potentially eligible for a knee replacement. And if the X-ray shows evidence of the derangement that would be improved by a knee replacement or a hip replacement, then they are clinically appropriate candidates. Now, what they did, they did a third step which was not usual. In other words, they had come up with evidence-based criteria that need for surgery was evident in this population. But then they did a third diagnostic test, namely they asked patients whether they would like to have the surgery. The options being medical management, weight loss and a whole series of different things. And the striking finding was that among those with severe arthritis, no more than 15%, who the physician said were definitely willing to, needed the surgery, were definitely willing to undergo joint replacement, emphasizing, and this is their quotes, the importance of considering both patient preferences and surgical indications and evaluating need and appropriateness of rates of surgery. And I think this concept of the dichotomy between evidence-based medicine and preference-based decision making is so important and so key, not only to the ethical framing of the shared decision relationship between the doctor, but also for essentially the social and economics consequences of what the overall incidence of surgery is and how variations occurring and whether we're wasting things. And more specifically, whether we're operating on the wrong patient. If we don't know the patient's preferences and we base it simply on medical evidence, we stand a striking opportunity to be operating on patients who, if informed, wouldn't want the surgery. And this brings me to the point that basically what we need to add to our whole concept of informed consent is informed patient choice under situations where they have been fully informed about what's known and not known about treatment options. Now, I want to just give you a list of all the procedures that are of this type and nature. These are what we call preference-sensitive surgical conditions. And these procedures vary extraordinarily in terms of the incidence of procedure rates from place to place. Furthermore, the decision aids, there's a whole literature now, I'm not sure whether you're familiar with this, but there's a whole literature of efforts to help patients learn what's at stake and what's involved and to help them make a decision which sorts out the preference issues. And these have been subjected to large numbers of clinical trials. Over 50 clinical trials of decision aids have now been accomplished. And what you end up is a better decision, a decision in which the individual who has exposed the decision aid does very well in understanding what's at stake, can answer questions about what the pros and cons are, what the risks and benefits are. And furthermore, if you're in a position to actually measure the value equation, i.e. to ask questions, not only did they know what was going on, but did they choose procedure, the treatment which fits their underlying values. In other words, is there concordance between choice and value? The answer, again, is yes. And we discovered this very early in our work with prostate disease where the trade-off turned out to be between sexual function for those and improved urinary tract function for those with large prostates. Men who were concerned about sexual behavior should consider not having the procedure. Those who were concerned primarily about urinary symptoms should have the procedure because it does a good job of fixing it. And we could show that people, men who had different attitudes towards their sexual and urinary tract symptoms and functions were making choices much better than those who were simply being advised by their physicians. Again, emphasizing, first of all, that it is probably not a good idea. You might use the word immoral to operate on someone who doesn't want something. It's a egregious medical error, yet it's happening consistently throughout the regions. Simply go back to 15% want it. I'm talking about knee replacement. That means about four out of five times you do the operation. If you do it just on the basis of medical indications, you'll be operating on somebody who doesn't want that procedure. Now, the bottom line then is that the clinical appropriateness should be based on sound evaluation of treatment options. That is, say, on outcomes research. But that medical necessity should be based on informed patient choice or shared decision-making among clinically appropriate options. It should be realized, and I think this is where your process-oriented strategies for determining medical truth really matter here, is that the informed medical necessity should be realized as the outcome of a high-quality shared decision-making process. When I use the word high-quality, I mean we actually have empirical methodologies now for evaluating whether patients really did make decisions based on knowledge and concordance with preferences. So, the second series of issues that Mark raises, that the accommodation process depends not only on the nature of the patient and the physician exchange, but also on factors that affect the achievement of accommodation, such as clinical setting, financing, and organization of care. And here is where probably the most compelling evidence comes out from practice variation studies, is that it is the context of clinical practice and sense of geography and financing and organization that determines medical fate. It's not preferences and it's not information. And here, just to give you some of the evidence, this comes from the New York Times, which always gets to the essence, but it says, do you need a knee replacement? Well, you should check your zip code. And by that, they mean check one of the geographic areas that the Dartmouth Atlas has shown, and we've looked at the incidence of knee replacement across the country to find about a four-fold, I mean, sorry, a five-fold difference between the low and the higher areas. Just for fun, I thought you might be interested to look at where Chicago stands and where Manhattan stands and any place in the country, and you'll see it goes from a relative, this is risk relative to Manhattan, which is one, up to Lubbock, Texas, is 3.5 times, or 3.4, twice times, Salt Lake is high, Chicago is low, but 50% higher than Manhattan. And the origin of this is not differences in patient preferences. We're not arguing that if shared decision-making is implemented, there won't be differences between regions, but if there is, they should be based on differences in patient preferences. This represents the practice-style issue associated with what's going on. And here's a very important way of summarizing this effect. Knee replacement in the early 90s versus knee replacement in the year 2000. And I think everybody can see that there's a strong relationship between the risk of having a knee replacement a decade apart. The black line says the rates are going up, but they're going up everywhere, and there's no regression to the mean. In other words, Chicago is always low, ish, and Lubbock, Texas, is always high, and it accumulates to large numbers of people being exposed to surgery in different environments because of this constancy. Why is this happening? The very simple reason is that orthopedic surgeons specialize in specific procedures. They don't do everything, and there's a group that does knees and hips, and they congregate in regions looking for medical evidence that says this person needs it, and they never transgress ethical norms based on evidence. But we know, are fairly competent that if we added to that dimension patient preferences, we would get a very different outcome. And I wanted to just kind of close with reference to Mark's work in intensive care, because that is one of the areas where the supply of medical resources, here's the acute care hospital beds across the horizontal axis, and the discharge rate for medical conditions are highly correlated. So your probability of getting in the hospital depends on the capacity of your local system if you have chronic illness. And when you look at academic medical centers, here we're looking at the days spent in hospital per decedent during the last six months of life among patients that are loyal patients of fairly familiar academic medical centers. Stanford University averages about 10 days. University of Chicago about 13.6, almost a month in hospital for every patient that's using that academic medical center. So whatever the mechanisms that are going on at sorting out patient preferences and need, they're highly susceptible to capacity. And here is the intensive care unit days in the last six months of life. And University of Chicago is kind of on the lowest end, but it's right in the middle actually when you look at it in terms of distribution. But these problems are almost nine days in UCLA in the last six months of life. UCSF, the sister hospital, 2.6. So these represent the challenges I think from an ethical perspective of which rate is right. The accumulative evidence here is that the high rate regions and the high rate academic medical centers actually have worse outcomes in terms of survival and other measures such as patient satisfaction and puzzling about that for a minute, you get back to the basic information that the evidence base for this variation is extremely weak. We have no idea whether or more is better, but we do know that on the basis of medical errors, if you put people in the hospital twice as often, your chances of having a serious medical error are going to be about twice as often assuming average probabilities. So it is not in the health interest of the health of the patient in our opinion to have this practice variation and it represents another great challenge. The question is whether shared decision making can solve this problem. I don't believe it can without changing a lot of the context, the reimbursement systems and other issues, but I do believe that these issues need to be taken back and ask you need to ask your systems at home because this data is available for every hospital in the country. What does this mean and what could be done about it? The constituency for change here will have to deal with these externalities as well as the doctor-patient relationship. Thank you very much, Mark. Thank you. Our final speaker of this session is Dr. Peter Ubel, who is a professor at the Department of Internal Medicine and Director of the Center for Behavioral and Decision Sciences and Medicine at Adjunct Professor of Psychology at the University of Michigan. Dr. Ubel received his MD from the University of Minnesota and his residency at the Mayo Graduate School of Medicine. In 1992, Dr. Ubel completed his fellowship in medical ethics here at the University of Chicago in general medicine from the University of Pittsburgh. Dr. Ubel. Thanks very much. When I came here in 1991 to enter this program, I had already lined up to do additional training in ethics at the University of Pittsburgh, but by the time I got to Pittsburgh, I decided I wanted to be trained as a social scientist, and that's really because Mark, while I was here, kept exhorting all of us fellows data, more data, reliable, generalizable, valid data. So really in the spirit of those exhortations, I want to reflect on your writings now, Mark, with a series of... What's the word for it? Ungeneralizable anecdotes. The first patient I'm going to tell you about is a guy I saw about a year ago who I'd sent to the liver clinic to discuss his chronic hepatitis C infection. His liver function was still quite good, but his viral load, the amount of virus floating around his bloodstream was really high and his blood tests and liver biopsies suggested that there was a lot of ongoing damage to his liver and that he might be 5 or 10 years away from cirrhosis. I met at the liver clinic with a really compassionate and caring physician, actually a friend of mine, talked to him about how serious his liver disease was, about the pros and cons of various treatments. When the patient came back to my office, it was clear he'd been well educated about this treatment. He knew it had a 50% chance of curing it with a disease, but would probably leave him for months feeling like he had a case of the flu. With all this information in mind and with vivid recollections of past bouts with the flu, he decided to forego that treatment. Now, when Mark began writing about the doctor-patient relationship in the early 80s, many clinicians were threatened by the idea of patient autonomy, the kind of thing that looked like my patient demonstrated that day going to the liver clinic. Social forces were rapidly transforming clinical practice, discarding the notion that doctors always know best in favor of an idea that patients and their preferences helped determine the right choice as we just learned. We all knew that already, as we just heard, I should say. And in this new model, this new paradigm, doctors were expected to act as information providers, helping patients understand the pros and cons, so they could put it together with their preferences and make the right choice, like informed consumers. Now, as a practicing physician, Mark found himself, this is my, from reading the manuscripts of his, it looked like he found himself sitting between this old paradigm of paternalism and the new paradigm of a patient autonomy, and he didn't think that either theoretical paradigm made sense. He understood the doctor-patient relationship as being one of accommodation and negotiation. So, as I started working with that hepatitis patient that day, I found myself negotiating with him. I wanted to find that C-glarean middle ground, I guess. I refused to just accept his autonomous decision to forego treatment. I was really worried this guy was going to be dying of cirrhosis, and I hated the thought of seeing him die. And I knew a lot of patients of my own who'd gone through this treatment and found it wasn't as bad as they thought it was going to be. So, I talked to him about that. Didn't change his mind by talking to him about my patient's past experience with this treatment. But as we kind of mused together about this decision, we came up with another alternative. You know, the tournament was a trial of treatment. See, my patient was overwhelmed at the thought of having months and months of flu-like symptoms. He didn't even know how bad he'd feel on the treatment, and it was overwhelming to have that uncertainty and this potentially terrible feeling to make a decision that grabbed all that on to him with no way back. So, I threw out the idea that he could try a month of treatment. And if it wasn't so bad, he could try another month of treatment. And if it turned out he didn't like it, fine, he could stop. Either way, I'd support his decision. So, he returned to the liver clinic, and he asked the specialist to start him on treatment. Now, in the early days of my clinical career, I worked hard and I quickly learned that that's not always so easy to do. One day, I was talking to a patient who had localized prostate cancer, another patient preference decision, preference-sensitive decision. The urologist had recommended his particular course of treatment, but he came to me wondering what I recommended. And I explained that the correct choice depended on his preferences. He said, and so I explained the pros and cons of all these things, so he could wrap them in, you know, and understand, well, what should I do? I said, no, no, no, this is your decision to make. He looked confused. Okay, so let me try an example. He said, what are you going to watch on TV tonight? He said, the hockey game. Bad decision, I said. You should watch the figure skating on Channel 17. Now, this was a heavily tattooed veteran. He did not look very happy at the thought of watching figure skating. He said, I don't like figure skating. I said, I can't tell you to watch, what to watch on TV tonight because it depends on your preferences. And for the same reason, I can't tell you what treatment is best. He nodded. He finally understood my point. I'm a brilliant communicator. He says, okay, God, I get it, Doc. Well, what would you do if you were me? Okay, so autonomy is clearly a complicated concept, right? And maybe sometimes autonomy can mean foregoing autonomy and asking for us to make recommendations. I rarely find out about doing that in clinical practice. In those situations when patients really do look to me for guidance, God bless them, I try to find out enough about them that when I make that recommendation, I'm feeling like it's reflecting their preferences and I'm stating it that way and giving them a chance to say, no, actually that doesn't feel right. And I have a back and forth, a negotiation, a combination. About a decade ago, I was talking with a patient that showed really some of the huge challenges we physicians have, clinicians in general, to help our patients make these kind of decisions. This was a gentleman I was caring for who had severe ulcerative colitis. It was causing to have bloody diarrhea and cramping abdominal pain daily. Despite being on maximal medical therapy, he had to run to the bathroom just about every night. Had to race there for symptoms. So realizing his medicines weren't up to the task, I spoke with him about another treatment option. I told him that if he had his colon removed and had a colostomy, you know, poop into a pouch, he'd be cured of his ulcerative colitis. But he could not imagine life with a colostomy. Now, was he correct in predicting that life with a colostomy would be worse than life with severe ulcerative colitis? I've done a bunch of research that shows that people often mispredict the emotional consequences of things like chronic chronic illness and disability, paraplegia, kidney failure, colostomies. People imagine these things and make them miserable. And yet when you talk to people who have these conditions, most are actually not miserable. I wanted him to think a little bit more potentially accurately about how a colostomy would affect his life. So I said why don't you next time you're at the GI clinic talk to the other patients there, some of them are going to have colostomies and ask them what it's like. So he did that. He came back the next time he saw me, told me that to a person, they told them we're living with the colostomy really wasn't a big deal. In fact, not nearly as much of an effect on their life as they thought it was going to have and much better than suffering from symptoms of things like ulcerative colitis. He said they told me they were doing great but I couldn't believe it was true. Now as a clinician I work hard to educate people about how their illnesses will affect their lives. So they can make informed decisions about their healthcare. I mean good decisions depend on good predictions in part, right? In this gentlemen's case I expected such information would show him that surgery would improve his quality of life and I was clearly wrong. At the time I cared for him he never opted for that surgery. Now clinical practice has taught me that for most medical decisions even if I wanted to be completely paternalistic I couldn't because patients often have the final word anyway. Now history is full of dramatic examples as Joel could have told us wherever Joel just went of extreme examples of paternalism. First Lady Betty Ford had not even woken up from her biopsy before her doctors and her husband the president decided to perform a mastectomy on her newly diagnosed breast cancer. Indeed in the old days it was common for doctors to withhold cancer diagnoses from patients out of fear that patients couldn't handle that kind of news. I mean fortunately this kind of extreme paternalism is rare in places like the United States. But the true impossibility of paternalism is revealed by much more mundane medical decisions. I mean consider blood pressure treatment. In many ways doctors today don't do a great job of helping patients share in blood pressure treatment decisions. We discover patients blood pressure is high, we prescribe a beta blocker form or something like that and send them home. We probably very rarely go into prolonged discussions of the risks and benefits of blood pressure treatment. Probably even more rare for us to talk about all the different blood pressure pills that are available and their relative pros and cons including things like out of pocket costs. I would guess that most blood pressure discussions do not meet the standard of either autonomous decision making or even of the kind of negotiation and accommodation that Mark wrote about. Yet patients still manage to have the final word. Because you see one of the biggest barriers to blood pressure control these days is patient adherence to the pills. What are they telling us by not taking the pills? I would expect that a major cause of non-adherence is that we didn't involve patients enough in this decision and we didn't help them understand what was really going on. In fact, I often at the VA where I practice will inherit patients who can no longer afford their medications and they'll come to the VA and they'll already be on all these blood pressure pills. And I'll ask them just a simple question. Why do you think we doctors care about blood pressure? What is high blood pressure anyway? A staggering number of them will say oh it's that feeling you get when you're really nervous. So when I'm really having a lot of pressure in that day, that's when I take my pills. I don't want to fail just to educate people about that. That's a problem. So, fortunately at the VA I can actually look on the computer and see how often people are refilling their pills and when they're not refilling them often and clearly they're not taking them every day, I have an opportunity not to scold them for not taking their pills but to ask them what's going on. Are the pills too expensive? Are they causing side effects that maybe we haven't talked about in a clinical encounter? Are they just forgetting? I tell them totally to understand that and that's probably the number one thing that happens with people. And then I get the fun of saying to them okay well how often you brush your teeth twice a day for most people? Great. Pills are twice a day. Put your toothbrush on top of your pill bottle and there's your daily reminder. And that's part of the joy of clinical medicine is to work, understand where people are coming from in their lives and help them make better decisions. Accommodation, negotiation coming to a shared understanding. Those are among the greatest joys I think about medicine. Last year in the hospital I cared for a man who was admitted because he could no longer swallow. This dysphagia was his only medical problem one that had snuck up on him over about a month. He simply couldn't find the muscular strength to put food or liquid into his stomach. Now after some investigation we discovered he had metastatic lung cancer and that the cancer was causing dysphagia through a perineoplastic syndrome that began treating his cancer and providing him with nutrition. His cancer was incurable but we were hopeful that with treatment he'd live a longer and better life. This was a tragic situation. This gentleman was in his mid-50s with a loving wife and several children who were ready to start families. I mean it was just tragic. He had a lot to live for and he knew he wasn't probably going to live very long. One morning I came into his room to see how he was doing and I quickly sensed that there was tension between them. They'd been arguing. That was kind of obvious. I asked if everything was going alright with a very ambiguous way of asking it so I wasn't just asking about clinically alright and his wife actually lashed out at her husband for having snuck off that morning to grab a smoke. He glared back at her with the evil eyes of death. We've all seen that from our spouses I'm sure and told her to mind her own business. So she looked toward me for support. I was the anti-tobacco medical doctor after that and I found myself making a strong recommendation. I couldn't sit back as a physician and merely describe the pros and cons of smoking. I couldn't just give him risk of benefit information to let him incorporate that with his own preferences and make a decision. I came in instead and I strongly advocated for what I thought would be in this man's best interests. I told him he should smoke and I told the two of them that they should not spend any of their time arguing about cigarettes. I couldn't imagine that smoking would have a major impact on this man's quantity or quality of life. In fact quitting smoking would probably ruin his quality of life at that point. I said you two obviously love each other very much. I know that you, and I looked at his wife, I know that you're just trying to keep her husbands from smoking because you love them and you want them to be healthy. But those cigarettes aren't going to matter anymore. What you two need to do is stick together because the next few months are going to be really difficult. We were hoping to improve quality of life but not save his life in that sense. I thought the most important thing for his quality of life was for him to have quality time with the people he loved. I think being a clinician gives us a different perspective on matters and it would be a dereliction of our duty to withhold our perspective when we think it will have an important impact on people's lives. Sometimes that means making strong but compassionate recommendations. I think one last story. One of the greatest joys, another great joy of clinical practice for me is to help people understand, is to try to understand where my patients are coming from so I can help them through their medical journey. Now I'm bolden by the experience I had told you earlier about with the patient with hepatitis C. I've increasingly looked for these alternative routes for patients who seem trapped between two unhappy decisions. So you won't be surprised at what I proposed to a patient I met one day who was reluctant to receive monthly shots to prevent recurrence of his prostate cancer. He was afraid these shots would be uncomfortable. It was our first visit together and he told me that he'd received the main treatment for his prostate cancer but his urologist had recommended that he receive a monthly injection of a medicine that would reduce the chance of recurrence. He was relatively healthy so he had a good chance if we could push off the recurrence for a while that the prostate cancer would never be caused of his premature death. But he was tremendously afraid of needles. Hated him. And the thought of a monthly injection was simply just too much. I talked to him at length about this decision. Was it really needles he was afraid of? Was I missing something here? Was he afraid of the side effects of the medicines? No, no. The cost of the medicines? Nope, not a problem in the VA. How did it go with the urologist? Did you guys have a good conversation about this? The urologist was an African American as was this patient. He was delighted. He felt like they really bonded that this gentleman he really trusted him completely but not so much he was going to put up with a monthly shot. At this point, of course, I brilliantly came up with this third way approach. I suggested he try a monthly injection once and if he didn't like it he could quit, etc., etc. And he rejected my idea flat. Any human being could be so afraid of a little needle that he would turn down a treatment that might forestall the recurrence of a life-threatening cancer. Absolutely couldn't understand it. Now, as I sat there confused about this man's decision he looked at me and he said, you know, you're the first doc who really understands me. It's a huge compliment. The moral practice of medicine does not require us to understand our patients. It just means we have to strive to understand them. Now, to comprehend this man's decision I had no idea what happened in the course of his life that would lead him to be that afraid of a monthly shot. I understood one thing that day that the moral practice of medicine is about striving for understanding even when we can't obtain it. When Mark described clinical practice as involving negotiation he was probably more right than he even knew at the time. I've been teaching a leadership course I think we teach what we don't know, right? I'm teaching a leadership course for clinical scholars at Michigan and one of the things we teach about is negotiation. So I was forced to look at some of the negotiations research. And it turns out that the best negotiators aren't the alpha males who stand strong against their competition. It's the best negotiators are the people who take the most time to understand the concerns of the people they're negotiating with. That to me sounds like a pretty good definition of clinical ethics. Okay, so comments, thoughts. Are we on? Hi. God, Peter, when did you get so wise? That's amazing. I don't remember that. No. That's what happens over the years I guess. And Dr. Wilberg you probably don't remember me from shared decisions. But people ask why I'm a filmmaker and bioethicist and the doctor and it's because that's how I can get close enough to understand things. That understanding peace and striving to understanding is absolutely brilliant. Irani and I have been sitting here talking about the cross-cultural aspects that are important. And what I've been doing for a number of years is looking at paradigms which transcend culture. Because when I showed my single movie at Jack Wimberg's institution where I showed this very linear movie with no computer fancy pieces I was showing it to older veterans at the Whitebarter Junction VA and they liked it because it fit them. Because it was a straightforward movie with no bells and whistles and I was just talking to them on it because it fit them. And figuring out what fits different groups of people and different individuals in groups is a really big deal. I think that that is if you had to have the one thing that bioethics is doing or has done or clinical ethics has done it's to enhance the understanding of and between ourselves and to do it stealth in all these different fields. We don't own it just because we don't go through and say, oh the reason everybody talks about the English patient now as a part of the culture is because of bioethics. But if you go through all of these things you realize that there has been an impact in that regard. So it's a comment more. So my question is is anybody and this is for Jack actually is anybody actually going through and sorting out the stealth the resistance fighter in the Nazi uniform aspect of clinical ethics in all of these different fields. Well the idea is that we all practice clinically in different fields. We all work in different arenas. Somehow I ended up doing bioethics consults in the AIDS epidemic in Botswana in Africa in 1994. Somebody thought that was a good idea. That's not written anywhere but it certainly has a lot to do with why we can do heart therapy in some countries in Africa now. My question is that have we ever looked for the way that bioethics has influenced things without standing up and saying this is clinical medical ethics. A perfect example DOJ is at my hospital yesterday. We have changed all of the beds in this 1,000 bed long-term care facility. How come? Steve Miles is how come? Nobody knows that. Nobody knows that bioethics was on the ground in that. Oregon healthcare program and analysis that the approach was a bioethics, a clinical ethics approach. Go out and ask people. People don't realize that we've been there. Has anybody actually documented those underground things? I think that's a base of research. Listening to your tales of your patients Peter reminded me of something my father wrote in his book and that is that we all get the patients we deserve and that maybe because of the way you approach it you get these wonderful people who have these problems but go help them and it gets back to the notion of physician know that I saw. If you understand how you react to a patient that may explain why those patients come to you and stay with you. I mean I think it's a good measure of social intelligence. It would be one of the criteria I'd add with Mark is saying how you select people to go to medical school. I was pretty convinced I would pair poorly on that test but if you've got better people than me that's even better. I think that back and forth and adjusting to any individual is just a crucial part of good. Preston? No, no, no. Don't use those. Those don't record. I'm absolutely struck by Jack's presentation about the charge to the profession to call inappropriate care what it is which is unethical and I don't hear the profession saying that overutilization over surgery is a medical error and that it is unethical and unjustified. Well I think somebody has to start saying that because operating on the wrong person is almost worse than operating on the wrong leg isn't it? And if we begin to frame it as a medical error it seems to get some traction when we frame it as an ethical problem nobody pays any attention to it. At this point so that we're only 15 minutes behind I'm going to ask us all to thank the panel and I'm going to ask the next panel to come on up. Our next panel is going to be focusing on three of Mark's papers relating to the issues of futility and hope. The first speaker of this panel is going to be Caleb Alexander. Caleb is an assistant professor in the Department of Internal Medicine in the section of General Internal Medicine Dr. Alexander came to the University of Chicago after completing medical school at Case West and Reserve in Cleveland, Ohio an internal residency at the University of Pennsylvania and he completed an RWJ fellowship at the University before joining the faculty. Dr. Alexander. Thank you. Well, I'd like in beginning to acknowledge my gratitude for the mentors and colleagues and friends that are part of the faculty and staff and larger McLean center family and the intellectual vibrancy and the professional support that the center provides is really unique and I'm grateful for it. It's also a great privilege to be able to reflect on a series of three important papers that Mark and colleagues have written about futility. Now I have to be honest in trying to thoughtfully comment on these I feel a little bit like a high school student giving Warren Buffett investment advice but nevertheless a few thoughts follow and in developing these I've tried to keep in mind what my wife encouraged me to talk about which was about ten minutes. So the first of the three papers is Pascal's Wager I've already heard a little bit about that important paper today. This paper contrasted Pascal's wager with the practice of hanging crepe when counseling a patient. For those of you not familiar with Pascal's wager it is this let us weigh the gain and loss in wagering that God is. Let us estimate these two chances. If you gain you gain all and if you lose you lose nothing. Wager then without hesitation that he is. Mark's insight here was that the clinical correlate of hanging crepe that is to offer seriously ill patients a most dismal prognosis results in a no-lose situation for the physician or so it might seem. As a result recovery is attributed to the knowledge and skill of the doctor while failure to recover is attributed to of course the expected outcome of the disease. So I think there are a number of insights in this paper as with many of his most important papers this one arose from a relatively common clinical observation yet the commentary challenged a prevailing paradigm and acknowledges the complexities and potential unintended consequences of what may be a well intentioned strategy to minimize the patients or family members grief. The paper also argues that any physician self-protection that occurs from the strategy is illusory or at the very best any wise and pound foolish. Nor does Mark let teachers off the hook although he comments that it may well be the house officer in the middle of the night rather than the well rested attending by the lucid light of the post call day that hangs the crepe nevertheless Mark argues that teachers have an obligation to determine how their trainees and subordinates interact with patients and their families. Finally I also thought that this piece was a bit prescient in that it anticipated the considerable advances in prognostication that have taken place during the last 30 to 40 years from Al Feinstein's computational efforts that mark sites to Manchester scores and Apache scales remarkable progress has been made in developing the field of prognostication. Nevertheless as many of you are aware and have contributed to there remains a serious challenge in applying this information meaningfully in individual patients care. I think one of the insights of this paper is the importance of hope which becomes all the more central with the recognition of hanging crepe and the embrace of a more honest patient and family disclosure. Of course the time when such honesty is needed most is during some of the most clinical times that exist. As Rosenbaum said and referring to this paper where there is no hope there is no future. Thus Rosenbaum and many others as well as Mark have emphasized the centrality of the doctor-patient relationship and physicians ability to soothe and comfort even when there is little chance of cure. It is this wisdom and insight and promise of this alternative that makes the rejection of hanging crepe the contribution that it remains in clinical practice today. So next I'd like to fast forward about 15 years. Note that the authorship team has expanded from one to nine. This second paper in the series includes John Lantos, Peter Singer, Bob Walker, Greg Kamosbacher, Gary Shapiro, Manuel Sanchez Gonzalez, Carol Stocking, Steve Miles and Mark. The paper was entitled The Illusion of Futility in Clinical Practice. The authors begin by reviewing the use of futility in ancient and modern ethics, public policy and case law. They then point out that rather than being a discreet entity futility represents the end of a long spectrum of therapies with low efficacy. This is morally problematic they argue because the closer that one looks, the more that one realizes that what seems to be black and white is actually gray. So let me review just a few of the serious challenges to determining futility that they highlight in their paper. First there's the linguistic ambiguity in the use of this vague quantifier as survey methodologist might refer to the term. One person's futility may be another one's significant possibility consider for example 3%. Also, what about the fact that statistical analyses are fallible and by their very nature they provide estimates rather than exact probabilities. Yet another problem with determining futility is that it may be influenced by social and psychological factors such as some people's claim that it would be futile to give a patient that has bacterial endocarditis a second mechanical heart valve if the cause of the bacterial endocarditis is persistent in intravenous drug use. As if that didn't complicate things enough, individuals may have disagreement about goals of therapy and of course there may be disagreements about the symbolic values of therapy as well. So I think the second paper is quite interesting and provocative and I think that the authors do a very good job unequivocally demonstrating the problematic nature of defining futility. They then go on to suggest a multi-step process to navigate issues, clinical settings where futility questions may arise and argue that such determinations must explicitly consider patients values and can be based on medical judgments and isolation. So there's a terrific saying about statistical models and I think it refers to conceptual models and conceptual papers such as this one as well that all models are wrong and some models are useful and as with that saying I think this paper may be more important for the problems that identifies than the solutions that it proposes. Despite the intuitive and moral appeal of what many may find an unobjectionable claim that is that futility determinations can't be based on medical judgment alone the devil lies in the details and as Callahan noted in 1991 referring to this paper the authors believe that patient preferences are morally crucial and that futility claims rarely should be used to justify a radical shift in ethical obligations. They leave clear unfortunately just when the rarely should be invoked or what should happen when physicians and patients or families profoundly disagree that is when shared decision making truly won't work. Of course there are other challenges to the proposed model in the second paper. Not the least of which is that it isn't clear that quote-unquote consideration of all potentially achievable goals and estimation of the probability of reaching each goal is practicable. Let alone doing so without being influenced by numerous contextual factors that the authors understandably caution may allow for hidden resource allocation decisions or social prejudices under the cloak of futility. Nevertheless I think the author's effort to individualize and contextualize decision making to consider patient's goals and values is a key contribution as well as a harbinger of changes to come during the decades since the paper's publication. Now we fast forward to 2000. Paul Helf, Mark Siegler, John Lantos, the rise and fall of the futility movement New England Journal of Medicine. So in the last of these three articles devoted to futility, Mark and colleagues describe the rise and fall of the futility movement based on observations of the published literature from 1997 to 2005. They discuss four categories of discussions about futility. Attempts to define futility where one can't help but be reminded of similar attempts with pornography, hard to define but you know it when you see it. Attempts to resolve futility debates with empirical data. Debates casting futility is a struggle between patient autonomy on the one hand and physician autonomy on the other. And last but not least attempts to develop a process for resolving disputes over futility. So as the authors argue attempts to define futility while laudable fail. We just considered a number of reasons that makes this such a challenge. One can look at some common efforts such as the effort to develop quantitative or qualitative definitions but for every definition there's a compelling counter argument or exception. Empirical data while helpful is also limited. After all keep in mind that lies that exist in the world lies damn lies and statistics and we already considered the statistical bounds and probabilities that such analyses can generate. One tempting lens with which to view the futility debates is to view it as a struggle between patient and physician autonomy. Along these lines some have argued that futility must be determined in light of the subjective views and differences of patients and in fact we heard these themes in the second paper of the three. Now despite passionate arguments to the contrary that the physician is not merely an extension of patients wishes but rather a moral agent, arguments about autonomy still fail to resolve the issue of futility. As the authors note in this third paper autonomy may be a quote-unquote complex network of relational obligations that must be viewed contextually as a zero sum game. Finally the authors in this paper consider efforts to develop a process to resolve the dilemmas posed by cases of futility. For example some have proposed a preventive ethics approach that seeks to head off issues around futility in advance. Other models call for a just in time approach clarifying information, negotiating, reaching compromise and if needed with the help of hospitals or the courts. Some have attempted to develop hospital based or regional policies although I would argue that their ultimate use and impact on clinical practice has been small and while the stakeholders may be different the real crux of these procedural suggestions seems in some ways to come back to questions of ultimate power and autonomous control. So these three papers they're important because they offer a window through which to observe an important set of issues in clinical medicine. The true cases that call for determinations of futility or that demonstrate the impossibility thereof are actually exceedingly rare and of these many can be resolved through time limited trials. Nevertheless at the core of futility debates are debates about the attempts to define the term the allure of data to help in this process and the understandable struggles for autonomy by patients, loved ones and physicians. At the very heart of futility debates lies uncertainty. Uncertainty the source of such anxiety and unease and yet an inevitable part of the practice of medicine. Perhaps the most important insight that Mark and colleagues make lies towards the conclusion of this third and final paper in this series that there is no substitute for dialogue between patients, caregivers and providers. That futility should mark a beginning rather than an end to clinical discourse and the navigation of the dire circumstances that such situations often entail. So these relational aspects of clinical decision making are perhaps the most crucial to compassionate clinical care and no level of debate about concepts such as futility can supplant them. Thus uncertainty and hope together patients, family members and physicians must deal with both of these and navigate their waters searching for moral certainty in a second best world. Thank you Mark for your friendship and mentoring as well as the substantial contribution that you've made to these important areas in bioethics and clinical care. Our next speaker will be Professor William May. Professor May is a fellow of the Institute for Practical Ethics and Public Life at the University of Virginia. Most recently, Professor May was appointed to Maguire Chair in American History at the John Kluge Center in September through December 2007. From 1985 to 2001, Professor May was the Kerry Maguire Professor of Ethics at Southern Methodist University where he also founded and directed the Kerry Maguire Center for Ethics and Public Responsibility. Professor May also founded and chaired the Department of Religious Studies at Indiana University where he taught from 1966 to 1980. From 1952 to 1966 Professor May taught at Smith College where he twice served as Chair of the Department of Religion. Upon retiring from SMU, Professor May also served the years of visiting professor at the Institute for Social and Policy Studies at Yale University. Professor May is the founding fellow of the Hacing Center where he co-chaired its research group on death and dying. Professor May. I think I've been invited here today because I directed that seminar, that NEH seminar that Mark attended some 33 years ago at Williams College. And about that time Mark shared with me in manuscript form his first eventually published paper under the intriguing title of Pascal's wager and the hanging of crepe just described. The physician so the argument goes who hangs the crepe places a no-lose wager with the family as a critically ill patient. If the patient dies the family is better prepared to face its loss and less disposed to blame the physician. If the patient lives so much the better for the family and certainly better for the physician who has contributed to the victory. Either way the doctor has not played God but served rather as a playwright who reserves for himself or herself the double roles of a set designer at a funeral and just possibly a Siegfried to the rescue. The storyline reminds me of the ancient traditions of the shaman who combined two roles which modern medicine has determinately separated the doctor and the undertaker. Mark also showed me at the time, the critical response to his effort of the editor of the New England Journal he took the editor's response as a near outright rejection I told him not to lose heart. The editor was not hanging the crepe for a real funeral resubmit the article with the suggested changes Mark did that and he won. It was his first published article I believe on October 23rd 1975 a considerable and timely honor for a not yet tenured young man in the section of general internal medicine here at the University of Chicago. Now in retrospect as we consider the trajectory of Mark's career we might call the decision to write that essay Siegler's wager on the not yet established field of clinical ethics I don't say nonexistent field there was the great Osler of an earlier generation and the distinguished Ed Pellegrino and Eric Cassell and other physicians at work at that time but medical ethics in the 1970s was a field overrun by philosophers and theologians more philosophers than theologians busy at work in a subdivision of what has been called applied ethics now what attracted theologians and especially philosophers to applied ethics medicine and other of the professions were alive with problems that might rescue academic departments of theology and philosophy intellectually from the aridities of logical positivism and language games disconnected from the world in which men and women anxiously live out their lives medical ethics specifically to help rescue and restore these academicians in the humanities to their ancient calling as interpreters of the human condition and prospect at the same time however applied ethicists became vulnerable as they engaged in this activity they occupied a highly exposed lands or no persons land between the heavyweight theoreticians the Aristotle's the Kant's and the Mills in their field of origin and the working professionals in a field of practice caught between the two worlds applied ethicists nervously suffered artillery shots from both theoreticians and practitioners foundational thinkers in philosophy and theology criticized them for operating deductively derivatively and parasitically drawing upon resources to which they themselves had not really contributed at their depth practitioners meanwhile might scoff that medical ethicists applied their categories woodenly to circumstances which in the round eluded their grasp so applied ethicists found themselves in the somewhat comic position of carrying water from wells which they had not dug fires which they couldn't quite find wouldn't it be more dignified to avoid that most painful of academic risks that is making an ass of yourself and stay instead within the safeties of the ghetto enclave by which one had been shaped and acculturated now two asides here in defense of applied ethicists among whom I would number myself a full defense would have to show how the disciplines of writing and speaking to an audience of practitioners outside of one's own neighborhood forces one to see one's own subject fresh with the eyes of a stranger in the humanities the social act of writing out and over to intelligent inquirers and not simply up to the gatekeepers in one's field is it best and heuristic act in which one doesn't simply package or retail what one already knows but engages in discovery and rediscovery and thus like the work of minor poets helps keep the great tradition active and alive second this work can also contribute modestly to the labors of the practitioner Machiavelli asked in the dedication of his classic what right has he who has never held the office of the prince to offer advice to the practitioners of that art in answer he compared himself to the landscape painter who occupies admittedly some distance from the high art of governance but whose cognitive distance opens up a space where busy practitioners not astigmatic with vice but myopic with the burden of their activities and responsibilities can consider and reconsider what they are up to afresh there can be intellectual pain in both directions but so much by way of apology for my craft but now to turn to Mark's professional wager and larger agenda that developed under the banner not of applied ethics or even medical ethics oh the word was chosen carefully the phrase was chosen carefully for medical ethics what Mark was up to differed from doctors who in mid life in the 1970s tried to play catch up with applied ethicists by taking intensive courses at Georgetown or attending conferences at the Hastings center under the tutelage of philosophers and theologians he wanted to engage in quote the starting point for which is the encounter between patient and healthcare provider this is as I see it ethics as reflective pause in the midst of practice ethics in the sense that Samuel Johnson meant it when he said we are all moralists perpetually geometers only by chance this view does not dismiss expertise in the field of ethics but recognizes that the expertise differs from that of the geometer it doesn't come from a promontory above delivered to those who lack the skill or the talent rather it's a disciplined order of reflection that arises in and attends to a field of practice a field of practice already engaged in moral reflection a further word now about Siegler's specific essay on the hanging of crepe the clinical practice of some doctors when the outlook for the patient is dire planners of this conference have located this essay with my colleagues here on the subject of futility and hope in these additional papers Siegler and colleagues argue that clinicians should not truly hang the crepe and stop treatment medicine offers no objective standard of medical futility that doctors might unilaterally apply to a particular case in which the patient or family disagrees with the doctor's judgment I leave aside here the current Brody case which turns on whether the patient is already dead Siegler and colleagues offer several reasons for not simply unilaterally withdrawing treatment first doctors don't have a consensus on the definition of futility grounded in an objective empirically derived standard second with one exception in contested cases the courts have not upheld the right of physicians to make a unilateral judgment about the futility of care engaging in a duel either in the courtroom or in the sick room over patient versus professional autonomy distracts from the professional's continuing task this gets to the heart of it third and most important quote the judgment that further treatment would be futile is not a conclusion a signal that care should cease instead it should initiate the difficult task of discussing the situation with the patient talking to patients and their families should remain the focus of our efforts in my judgment that advice generally makes sense but the papers do not explore the compelling reason why the so called futility movement gets it wrong when it looks for an objective standard quantitative or qualitative on the basis of which doctors might unilaterally stop treatment the futility movement overlooks the full clinical reality the power of bonding in human life especially obvious in the case of parents with their children that renders unilateral action unusually obtuse abstract and lacking ultimately in clinical authority unilateral action does not take into account the full dynamics of the clinical situation that is the objectivity with which the clinician must deal specifically bonding is the tie that binds in human life the tie that does not loosen in the sick room parent to child to wife bonding engenders loyalty to the being and well-being of another in a sense loyalty is too weaker term since it suggests a relation that depends upon the will of both parties bonding establishes a tie so powerful that neither can undertake much without reckoning with the consequences of being and the well-being of the other bonding is the reality in the natural order and the clinical setting that covenants in life crown and seal in letting go of a child parents must let go of a part of themselves indeed they would gladly surrender themselves or a part of themselves if they thought that action would secure the well-being of the child whatever happens they will not come out of this grievous event the same persons their being their way of being in the world suffers a profound alteration I'm not arguing here for an uncritical deference to parental wishes or suggesting even that a society cannot set limits to the treatments it will pay for however we to narrowly define the professionals responsibility in the midst of the families tribulation if we reduce clinical responsibility to the choice of either treatment or withdrawing treatment that choice is but a fraction of the prospect for the bonded and but a fraction of the total responsibility of those giving them care a lead article in the futility movement by Schneiderman, Jacker and Johnson called medical futility its meaning and ethical implications doesn't entirely neglect the family's stake in decision and outcome it admits of exceptions and it cautions against peremptory unilateral action in at least some cases for example a pause to let the patient see a son or a daughter not yet arrived or to facilitate coping and grieving by family members but the language surrounding the exceptions is somewhat dismissive and condescending the authors refer to quote the emotional bias or again emotional investments of others phrases that but palely reflect the power of bonding in human life the conventional language of objective-subjective implies that the physician occupies a higher more distanced objective rational ground that justifies withdrawing treatment unilaterally and forthwith except for passionate compassionate accommodation to the biased that is irrational state of affairs but parents are bonded to their children not just emotionally invested in them and some would see the power of bonding conjugal, parental filial, fraternal sororal, compassionate and even professional one of the concrete defining marks of our humanity it would be to abstract spectral and irrational to marginalize this reality by treating medical futility simply as a matter of drawing lines between the rights of two competing sources of autonomous power in brief we limit the doctor's alternatives too much if we narrow them to unilateral decision making on the one hand and submissive technical facilitating on the other Siegler and colleagues are right in insisting that quote talking to patients and their families should remain the focus of our efforts but such talking takes time it means teaching and being taught by the patient and the patient's family and in an era of rapid fire medicine where economic pressures force physicians to use that buzz word productivity to describe our at at the bedside when patients contact sometimes dwindles down to six minutes teaching gets squeezed out teaching is slow boring in hardwood so at this point clinical ethics spills out into some of the larger organizational ethics and the economics of the healthcare system if clinicians are to practice not perfectly but well thank you our last panelist is John Lantos John is the professor of pediatrics and associate director of the McLean Center for Clinical Medical Ethics here at the University of Chicago he's also served as section chief and was formerly the co-director of the Robert Wood Johnson Clinical Scholar Program John was also one of the early fellows at the McLean Center for Clinical Medical Ethics he's currently on sabbatical at the center for practical bioethics in Kansas City where he holds the John B. Francis chair in bioethics please welcome John thank you very much when Barack Obama first announced his candidacy for president economists had an editorial where they said he's standing in one of the most dangerous places on earth between the Clintons and the White House I'm aware that I am standing between bioethicists in an open bar so I will be so I will be brief also much of what I was going to say has been said already so I'll stroll down memory lane for a moment it was great to hear Al Tarloff talking about Mark's early days stories that I'd never heard particularly about what a weird and bizarre guy he was which brought back memories of my early days I came out of the back woods of West Virginia to come to the ethics center here and had no idea what I wanted to do and when I got here met an amazing cast of characters the first person I met was Laura Lane now Laura Roberts a pregnant and barefoot med school dropout who looked a little bit like Joni Mitchell my colleagues were John Lapuma who's gone on to become a bestselling author of cookbooks Dave Sheeter Meyer who writes poetry about spirituality and death Abby Zugar who writes features for the New York Times and Mark himself who when I went in for an interview offered me a cigar a fellowship and said that he might even be able to get me a pen. So while we celebrate those early days and talk about the distinguished achievements the endowed professorships that fellows have gone on to achieve we should remember and give credit to Mark for what poor material he really had to work with and acknowledge that among its other achievements the McLean Center has always served as a sort of anti-cruelty society shelter for medical mongrels and misfits who came here deeply wounded by medical education and clinical practice so thank you for taking us in so in today's New York Times Errol Morris writes quote without trust civilization would be impossible we can't possibly ever know everything through first-hand experience we can't check everything or hold everything up to scrutiny we have to depend on others for information in some cases the dependence on others is not critical in others it is of crucial importance he might have been talking of the doctor-patient relationship patients rely on doctors to tell them truths upon which they make life and death decisions but reliable are doctors when they speak to patients about these matters 33 years ago Dr. Siegler published the paper that we've all been talking about about Pascal's wager and the hanging of crepe and it may be both his most whimsical and his most profound work Siegler analyzed empathized with and ultimately criticized the common physician communication strategy of hanging crepe that is of consciously falsely exaggerating the bleakness of the prognosis for their own psychological self-interest he showed that for doctors this strategy had certain appealing features if the patient died the family would have been adequately emotionally prepared they would not blame the physician after all he had predicted the death if on the other hand the patient recovered as we heard the patient the physician's skill and he likened it to the situation of the disbeliever whom Pascal addressed for whom the belief in God seemed to be a no-lose strategy and suggested that for the physician hanging crepe would be a similar no-lose strategy I want to suggest that both Pascal's wager and the hanging of crepe bear a certain resemblance to that famous conundrum of modern mathematics or psychology or logic called the prisoner's dilemma in its classic form the prisoner's dilemma posits the following situation two people A and B have committed a crime and they are being interrogated in separate rooms they are the only ones who have witnessed the crime and so are the only ones who can incriminate the other they have to decide whether to clam up and say nothing or to rat on the other guy what is the dilemma? if neither one of them rats then both go free if prisoner A doesn't rat but prisoner B does then B will get one year on a plea bargain and A will serve the maximum sentence of ten years and vice versa whereas if both rat on each other both will serve five years so what should each of them do? the dilemma is fascinating because it is clear that both prisoners would be better off if both remain silent but the best strategy for either in the situation may be to rat on the other it is a trust game played under conditions of uncertainty prisoner's dilemma reasoning can help explain how the doctor's hanging crepe strategy actually led to the futility dilemmas that became the subject of the two other papers in this section and how we must remember how things changed between 1975 when this paper was published and 1988 when our first futility paper appeared so recall to locate Pascal historically and culturally that it was published just one year after the first hospice opened in the United States in New Haven and two years before the Karen Quinlan decision that essentially legalized DNR orders ICUs as we heard earlier were a new thing the Society of Critical Care Medicine had just been founded five years earlier and the technology of the ICU was strange, wonderful, mysterious and new in ways that made families particularly powerless and naive and increased their dependence on the kindness of strange doctors strange in both senses unknown and a little bizarre the doctors who worked there and family members were not in a position to challenge the doctor's authority or recommendations, instead they could only respond to crepe hanging by taking the physician at his word they did not bargain or choose further because hospice was new and DNR orders were still unheard of they did not respond to crepe hanging as they might today by requesting withdrawal of life support or palliative care instead they were assumed physicians who were hanging the crepe to take the news as a cue to begin their own mourning process but not as an invitation to participate in the choices that would then be made seen in this way the strategy of hanging crepe could have seemed to be psychologically beneficial to the patient but not threatening to the physician's authority in principle Siegler writes it is the family of the dying patient who derives the maximum benefit of the physician's communication to them in the hanging of crepe and he goes on the physician appears to share with them his special knowledge of the patient's condition and his perception of the inevitability of the patient's death the family is prepared for the worse and the candor of the strategy requires that family members begin to think about the imminent possibility of death it's a great paragraph that appears to share and thus displays candor how does that change how does the situation change once patients become not the passive recipients of medical information that they were in 1975 but instead players in a shared power game well in the prisoner's dilemma sort of framework the family must decide whether or not to believe that the dismal but not hopeless prognosis that the doctor is suggesting by crepe hanging is or is not accurate and their responses may go something like this if they believe the doctor's prognostication and thus see death as inevitable they would likely today opt for palliative care this would not be what the doctor wanted them to do he was hoping that in spite of the bleak prognosis treatment that would prove his skill in that case if they opt for palliative care the physicians no lose strategy of hanging crepe now claims a victim the salvageable patient now sent to a preventable death alternatively the family may not accept the dismal prognosis suggested by the funereal crepe in rejecting the physicians bleak prognosis they make their own pascalian wager about the accuracy and the trustworthiness of the physician they decide in essence whether or not to believe in the doctor who is playing God for such a family the decision analysis goes like this my goal is to maximize the possibility that my loved one will live and for that I'm willing to accept the possibility of some futile treatment during the dying process if the physician is hanging crepe then I must oppose him in order to ensure that my loved one gets appropriate treatment if the physician is not hanging crepe but is in fact simply giving me an accurately dismal prognosis then I have nothing to lose by advocating continued treatments it won't work anyway of course the nothing to lose hypothesis here is as questionable as it is for pascal's doubter who after all if he gambles wrong by believing in God loses a lifetime of hedonistic pleasure here on earth that he has for gone in hopes of eternal reward in the crepe hanging situation the family loses for their loved one the possibility of a peaceful death in palliative care the prisoners dilemma framework helps by revealing how an assumption of trust a deep belief in the trustworthiness of the other and a fundamental willingness to risk altruism can ultimately be the most self-interested strategy prisoners who hold seemingly selfless moral convictions ultimately profit the most those who act in ways that seem most likely to advance their self-interest end up worse off in a similar way the doctor asks for the strategy of crepe hanging for the self-interested reasons that make it seem like a no-lose psychological and professional strategy may generate responses that ultimately make everyone worse off doctors anger at patients who demand feudal treatment is ultimately then the response of the prisoner who's been ratted on by his buddy no who ratted on his buddy hoping to get off free now that their buddy ratted on them too because neither trusted the other both are worse off so this paper like so much of Dr. Siegler's work focuses on the details of particular doctor patient interactions in order to illuminate larger issues of altruism and trust that are and always have been the moral core of the profession thanks