 On behalf of the McLean Center, I'm delighted to welcome you to today's lecture in our year-long series on end-of-life ethical issues and end-of-life care. Next Wednesday, Dr. Susan Toll, who is the Director of the Center for Ethics in Healthcare at the Oregon Health Sciences University, will be here speaking on transforming how we care for those near the end of life. Later that same week on Friday and Saturday, November 14 and 15, I want to call your attention to the McLean Center conference. This will be our 26th annual conference on clinical ethics and will be held at the University of Chicago Law School. You can find more information about the conference and can register at the site that I'm showing you, McLeanConference2014.eventbrite.com. With that background, it is now my privilege to introduce our speaker today, an old friend and colleague, Professor Alan Miesel. Professor Miesel is the founder and director of the Center for Bioethics and Health Law at the University of Pittsburgh, one of the oldest such centers in the United States, founded in the 1980s. Professor Miesel received his JD from Yale and then became the founder of the Bioethics Center. He is a leading national and international authority on end of life care, on decision making and informed consent to medical treatment. He's the principal author of a book called The Right to Die, The Law of End of Life Decision Making, which is now in its third or fourth, third edition, and which in 1989 received the Association of American Publishers Award for being the outstanding book of the year on legal practice. In 1993, Professor Miesel served on the White House Task Force on Healthcare Reform and has also served often as a consultant to Congress on studies in end of life issues. In the early 1980s, Alan was the assistant director for legal studies at the President's Commission for the Study of Clinical Problems in Medicine. In that important role, he helped draft the Commission's rather revolutionary studies on informed consent and on end of life decision making. For example, the idea of shared decision making was first proposed by the Commission in this report. Alan may recognize this one, Making Healthcare Decisions, a report that was published, I think, in late 1982 or early 1983. Today, Professor Miesel will speak on the topic The Lack of Consensus About Futility. Please join me in welcoming Professor Alan Miesel. Thank you very much, Mark. It's my honor to be here today, and I really appreciate the invitation. Mark mentioned that we're old friends, and I'm glad of that because if I weren't an old friend, I'd be a dead friend, so better this way. I suppose I could be a live enemy, an old live enemy, but I'm not. Okay, today I want to talk about The Lack of Consensus about the subject that we call futility, and I'll get into it eventually what I think futility is or might be. A consensus developed about end of life decision making in the United States roughly between 1976 and 1990. It's an arbitrary but not unreasonable period of time, 15 years. And I mark it by the Karen Ann Quinlan case in 1975, which thrust the problem of end of life decision making really before the public in a way that it never had been before. Time magazine, cover of virtually every major newspaper in the country, and also television stations, evening news. This was a topic everyone was talking about. 15 years later, after a period of many similar high profile cases throughout the United States, a case like this finally got to the United States Supreme Court. And that's why I use these as two somewhat arbitrary bookends, and I concluded, and I think a lot of other people have, that by 1990 to 1995 roughly, that there had been a pretty good consensus that had developed in this country about how to deal with end of life decision making. Now when I say consensus, obviously it doesn't mean that everybody agreed with it, lots of dissent, and a consensus among whom. Well, mostly among those involved in end of life care, healthcare professionals and those who commented on it, lawyers and bioethicists. And as I say, there were some very loud dissenting voices, but I think by and large, there has been a progression from 76 to the current time, really, of adopting the points in this consensus. Now I like to talk about what the consensus consists of. First of all, what we agree about is stuff that we agree about in theory, and often in practice, but not always, because it's often difficult to hew to this. First of all, and foremost, competent patients have a right to refuse medical treatment. That's bedrock. That existed really before the Quinlan case in 1976, going back, I don't know how far, but often honored more in the breach than in the observance, or if not dishonored, at least skirted. Patients who, incompetent patients, patients who lack decision making capacity. That's always been problematic, and it really occupies the central part of the consensus. And what has been concluded is that incompetent patients have essentially the same substantive rights as competent patients. They have a right to refuse medical treatment, but they can't exercise it by definition because they lack decision making capacity. Now, that's a bit of a black and white statement because there's a spectrum of decision making capacity, and there's people who are unconscious on the one end, to people who are quite conscious and quite alert and quite involved, but also quite demented on the other end. So they can utter a decision, but the question is, is this the kind of decision that we should honor? Another key part of the consensus is the decision making about continuing or terminating treatment, especially end of life treatment, but all treatment, should be made in the clinical setting, that we should not be going to court to resolve disputes that might arise. The courts don't want to hear these cases. They say so every time there's a case. But of course sometimes you can't get resolution and people insist upon going to the wall, and you do wind up in court. I think that that's less frequent today than it was 10, 20 years ago, but it's very hard to measure because there are no good statistics on how many end of life cases go to court, what an end of life case is, etc. So definitionally you got some problems in terms of statistics. Nobody's keeping track, so it's very, very difficult to say. But my impression is that these kinds of problems are getting worked out for the most part in the clinical setting. Agreement that it is the patients' preferences that govern. Obviously with a competent patient, and how do you know the preferences? You have a discussion with a patient. But a patient who lacks decision making capacity may be incapable of having a discussion, may be incapable of having a coherent discussion, or may be so disordered in his or her thinking that you are very reluctant to follow the patient's wishes. But we've also agreed that patients can express their wishes in advance of losing decision making capacity. And they can do that in one of two ways, actually three different ways. The classic way, which I'm sure you're familiar with, is living will, where someone writes what they want, what they don't want under particular circumstances. The other is by appointing an agent, sometimes referred to as a proxy, to make decisions for yourself when you're no longer able to do so. The third way is to combine the two, to have instructions, and to give those instructions to somebody who you hope will carry them out, and fine tune them as facts and circumstances change. The patient's preferences need not be expressed in writing. An oral expression is fine, but of course you may have more difficulty proving that the oral expression was actually made, or that it is what it purports, what others purport it to be. The problem with living wills, I'm sure you're all aware, is that they ask you to contemplate how you're going to die. And most people don't really know how that's going to happen, even those people who are terminally ill. And very close to death may not know what the last treatment is that's keeping them alive, what it is that would have to be discontinued. So that living wills tend to be fairly inflexible, they may not apply to the circumstances you have at hand, or you may not know whether they do, or you have to extrapolate from them and try to figure out whether they do. And hence the designation of a surrogate has really become the preferred way of learning the patient's preferences in advance. We also agree that the surrogate, the agent for the patient, should be expressing the patient's preferences, not his or her own. How do you know? There are serious problems there about attempting to ascertain whether these really are the patient's preferences or the surrogate's preferences. When I say surrogate, I mean in many instances not just a particular person who was designated by the patient, but usually, or not usually, but often, a small group of family members, sometimes a large group of family members, sometimes friends involved, those who are interested and are participating in the patient's care have been important in the patient's life. So even circumscribing, defining that group of people can be problematic. The substituted judgment standard asks essentially what would the patient want if the patient were now able to know his or her circumstances and make a decision about them. It's a hypothetical question. And you have to go back and look at the patient's expressed preferences, implicit preferences, their goals, their values, and any statements they may have made about the particular treatments in question. A lot of controversy in the 1980s about feeding tubes. The Quinlan case and some progeny in other states made quite clear that you could terminate life support. But what was involved in some of those cases was ventilatory support. If you terminate ventilatory support and the patient doesn't die, as happened in the Quinlan case, Karen Quinlan was on a ventilator. She was weaned from the ventilator, lived another 10 years. Then the question arises, what about the termination of medically supplied nutrition and hydration? And there was a lot of controversy about this. There's still is some in the early years of the 1980s. But I think certainly as a legal matter, it has been settled by the Supreme Court, which has concluded that nutrition and hydration medically administered are no different from any other form of medical treatment and can be declined. Justice O'Connor in the Cruzan case said, we really don't need to get into whether or not nutrition and hydration is a medical treatment because it involves an imposition on the patient's body. And the legal tradition of the common law has been that that constitutes a legal wrong unless there's consent to it. So if consent is not given or if consent is withdrawn by the patient or by someone who has the authority to act for the patient, namely a surrogate, then it can be withheld. And I think that's a far more satisfactory way of looking at whether or not nutrition and hydration is food and water or whether it's a medical procedure. The question is, is it being administered with consent of the patient or someone authorized to decide for the patient? And the final point of the consensus, I say final, you can slice the salami many different ways. And I've written about this where I've had other points and I've taken some out. But at least for today's purposes, that actively hastening death is morally and legally distinct from passively hastening death. What's passively hastening death? Withdrawal of life support, withholding of life support, termination of treatment. A lot of phrases to describe passively ending a patient's life or hastening death. Active, on the other hand, is a hastening of a patient's life where usually a physician, but it can really be any other person, administers something to the patient to end the patient's life. It can be a lethal injection in the medical setting. It can be a shotgun blast in the non-medical setting. Both of those are equally criminal, at least as far as law is concerned. And then there is of course another form of hastening death and that is where the patient hastens his or her own death. Through the administration of some kind of lethal substance, it could be a prescription of medication or it could be many other things that could end the patient's life. But my point is that the courts tried to draw, and I think the consensus tries to draw a very bright line between the two and says that what we call active is not what we're talking about. That's not what we've given legitimacy to flowing from the Quinlan case, through the Crescent case, and many other cases in the United States. Rather, what we're giving legitimacy to is withholding or withdrawing medical treatment that would ordinarily be administered if there were no request to withhold it or withdraw it. Now, withholding withdrawing, you might say, well, withdrawing anyway involves some active conduct, right? Patients on a ventilator, you've got to do something. You can't just wait for the power to go out and then not turn it on. That would be passive, right? So that there are actions that have to be taken even in passively hastening death. But the patient's underlying illness or injury is what brings about the patient's death as opposed to actively hastening death, where some intervention from the outside is the cause of death. So it really has a lot to do with cause of death. Now, in the early 1990s, after the Crescent case, lots of people made predictions as to what would happen, and I chimed in as well. And I wrote an article called The Consensus About... I don't know what it was called. The Consensus About End of Life Decision Maker or something like that, published in the Kennedy Institute of Ethics Journal, in which I went through the content of the consensus, and then I began to speculate about what's going to happen in the future. What might undo the consensus? And it seemed to me that at that time, and it seems to me now too, that there were two possible developments. One was medically assisted dying, which I then called mercy killing, a phrase which I no longer use. And the other was how do we deal with requests for medical treatment that is deemed to be futile by the patient's health care team or some important members of that team? There has been a lot of development in the last 20 years, a lot of activity around the first of these points, challenging the bright line between active and passively hastening death. As you may know, two states, Oregon first in 1994, reaffirmed in 1997, Washington I think in 2008 or thereabouts, enacted legislation that legalized physician aid in dying of the sort where a physician writes a prescription for a lethal dose of medication for a patient and the patient administers that. That's not what I'm talking about today. It is, of course, very controversial and thrust into the news just over the weekend with this case of Brittany Maynard, a young woman from California who moved to Oregon specifically to take advantage of the law, though I would note you have to be an Oregon resident and that requires being there for six months. She knew. She knew what she was dying of, brain cancer, brain tumor and she knew that if she wanted to go there, she had to be there six months in advance and she did. And what effect will that have? I don't know. I mean, maybe it's just Andy Warhol's 15 minutes of fame and then we move on to the next topic, or maybe it will play some role, but I suspect that we're going to have a very slow evolution towards the acceptance of physician aid in dying of the sort legalized in Washington and Oregon, now also in Vermont and it's either Wyoming or Montana. Pardon me for my East Coast parochialism, but I can't remember which state it was. They kind of blend together for me and maybe in New Mexico, it's a little unclear whether that's happened. And of course, there have been efforts in other states that have failed most notably in 2012 in Massachusetts. One reason I won't make a prediction is because I'm not a very good prognosticator. If you had asked me 20 years ago whether same-sex marriage would be legal in half the states today, I would have laughed and said no, and I think most people would have. So it's very, very difficult to predict these kinds of social trends and movements. The other issue which threatened to upset the consensus had to do with futility, futile medical treatment. Futility challenges the heart of the consensus, namely the ethical principle of autonomy, that people have the right to act for themselves to make their own decisions and that this applies in the context of medical decision making and end of life medical decision making just the way, just as it does in many other aspects of life. Between 1975, 1976, the Quinlan case and the Crescent case in 1990, we clearly saw a gradual swing of the pendulum from paternalism being the governing value in medical decision making to autonomy being the governing value. Now this didn't happen overnight, it happened gradually. Sometimes we're two steps forward and one step back. It's not to say that autonomy didn't exist before 1976, but again it's a convenient way of marking off a development over a period of time. There were cases before the Karen Quinlan case in which people attempted to refuse treatment that would have saved their lives and they were permitted to do so. I think most notably the Jehovah's Witnesses blood transfusion cases that came up in the 1960s and the 1970s and paternalism existed in a variety of different ways too and again not just in medical decision making but it was a more prevalent value I think in many aspects of our social lives. Schools for example, colleges were said to be in loco parentis. In loco parentis, paternalism, same origin, that there was a parental function to give guidance. When I went to college, I hate to think of it, 1964, no I loved to think of it but it was a long time ago, there was a rule that students had to wear ties to dinner, now students because they were all male and lo and behold one day somebody showed up in a tie for dinner and just a tie and the rule crumbled after that and there were parietal rules. You didn't have members of the opposite sex at male colleges or female colleges in your room after a certain time, usually a ludicrous time like 10 p.m. and that was just on weekends, weekdays were for studying. I understand now that most colleges that weekends are at least three days, maybe three and a half days and that Thursday night is a new Friday night so that the swing from paternalism to autonomy occurred, I'm trying to point out, not just in the medical decision making context but it was clearly apparent there. In the early 1960s there were many debates in the medical literature about whether or not patients should be told that they had a diagnosis of cancer. Now I don't mean to suggest that today that question doesn't sometimes arise, of course it does but I'm talking about the default position. In 1960 or thereabouts the default position was you don't tell patients that they have cancer. Sometimes it wasn't too easy to hide but efforts were made. Today the assumption is just the opposite that patients are entitled to know occasionally family members may request that a patient not be told for various reasons whether they're good ones or not. There has been in my view a deification of autonomy and by that I mean that the ethicality of every move in medicine and to some extent other parts of society has been measured against an autonomy yardstick. If something promoted autonomy it was ethical and if it didn't promote autonomy well it was pretty questionable or at least we're going to have to come up with a pretty good explanation as to why that position ought to prevail. This was true not just in the medical decision making process in the clinical process but also in the courts and many courts went to great lengths to invent or find or create autonomy when none existed. I'll just give you a couple of examples from the Massachusetts Supreme Court which was probably the worst defender in this regard. It concluded as other courts had that we should follow patients' preferences. The first case to come to the Massachusetts Supreme Court involves a man who had never had decision making capacity. He was in his 60s. He was what they then referred to as mentally retarded and couldn't express a preference. He could barely express anything. He had terminal cancer that was leukemia and the question was whether to treat him or not and the court engaged in these verbal logistics to conclude that Mr. Segwitz, the patient, would not have wanted treatment to be administered if he had decision making capacity or competent to do so. Really an invention. Nobody knew what he wanted and nobody could know what he wanted if we're saying that this is what he wanted and what we're really saying is something quite different. It isn't in his best interests, maybe. It isn't what the average person would decide. It wasn't what most people would decide but it clearly was an expression of his preferences but the court so honored autonomy that they had to word it this way. And they went on to do so in some subsequent cases involving infants and termination of ventilatory support. Now I think that that extreme has disappeared but I wanted to give you an idea of how far it had gone. Physicians learned and applied the consensus very well, gradually, but very well and so that by probably the 1990s physicians would no longer tell families that this is what needs to be done but would have more of a conversation about it and proceed from there. The problem was that sometimes family members requested or demanded treatment for a patient or sometimes the patient with decision making capacity demanded treatment that the attending physician, the healthcare team, any reasonable doctor would have found to be an unreasonable request and the physician was troubled about honoring this request. One of the first cases to come to fore was by fore, I mean publicly. It was a case in Minneapolis around 1990, the Wangley case, an elderly woman diagnosed as being in a permanent vegetative state, being kept alive on a feeding tube. I don't know if she had a ventilator, I think she may have had some pulmonary compromise as well and after much dancing around with the family, a lot of months were. The healthcare team could not convince them the termination of treatment was appropriate, that she was never going to recover, that the administration of treatment was, as they said, futile and the physicians went off to court to get an order to have treatment terminated. Now they were unsuccessful but this is the paradigm case and it's the kind of case which has come up time and again since the 1990s. Not nearly as frequently in litigation as the earlier cases refusing treatment. These are cases demanding treatment. Now the first problem about why I think there's no consensus about how to handle these cases is that there's a lack of consensus about what futility even is. In the Karen Quinlan case, the parents of the patient wanted treatment terminated because they believed that it was futile to treat a patient in a persistent vegetative state, permanent vegetative state, that it wasn't going to get her out of that condition. It was merely going to keep her in that condition until she died from some other cause which in fact is what happened 10 years later. So for practical purposes, I would frame futility this way. This is not a definition, it's more of a description. A situation of futility arises when a patient or surrogate demands to have a treatment or a course of treatment that the physician, and I use physician to encompass healthcare team, the physician believes is unwarranted and the physician declines to provide it. So we had futility in the Quinlan case but this was futility proclaimed by the family. This treatment's futile we don't want to administer it. We then develop a right to refuse medical treatment and physicians learn that patients have a right to refuse medical treatment and now go to the family and say things like, what would you like us to do? Second, there's a confusion I think of negative and positive freedom. Freedom from versus freedom to. Negative freedom is the right to be free from unwanted interferences with our bodily integrity. That's the right to refuse treatment or right to refuse food and water. The right to refuse lots of other things. Another one of great contention these days, certainly on college campuses in the press, is sex. So consent is a concept that applies across the board to many other things as well. Positive freedom is a freedom to do things, a freedom to act on one's own behalf, to chart one's own course. But does that positive freedom include the freedom to compel others to do things for you in order to provide you with the opportunities that you seek? Traditionally, society has been much more averse to positive freedoms than negative freedoms. And not just in the practice of medicine, but across the board. So that in order to provide equal opportunity, in order to provide equal economic opportunity, we've developed a number of programs, welfare programs in this country. Do you have a right to them? Yes, but only because a legislature has enacted a law which says you do. But if that law didn't exist, you couldn't go and sue and demand that you were entitled to equal opportunity, let's say in the educational sphere, simply because the Constitution says that there's a right of equal protection. No rights of positive freedom. And that has been borne out by the Supreme Court in the educational context and in other contexts as well. A very important aspect of the problems about futility is a failure to articulate the goals of treatment. A failure on the part of the healthcare providers sometimes and a failure on the part of the patient or the patient's family, surrogate, other times. What is it exactly that we want? In the Karen Quinlan case of a young woman in a persistent vegetative state being kept alive by a ventilator and feeding tubes, was the treatment or those treatments, were they futile? Wrong question. Were they futile with respect to accomplishing some goal? That's the right question. And then the goal has to be specified. For the doctors, the goal was keeping her alive. For the family, the goal was her having a meaningful existence. And because they disagreed on goals, they couldn't agree upon a course of action. So attempting to clarify goals is extremely important in trying to avoid cases where families and patients are at loggerheads. Futility implicates fundamental values, autonomy and paternalism, and there's very little consensus about how to strike a balance between those two across society in general, not just in the medical decision-making context. So to think that it would be simpler here is, I think, pie in the sky. It's not going to happen by the snap of a finger. Costs of treatment. Under almost every futility case is an economic issue because prolonged treatment costs money. We're often reluctant to spend treatment on medical care even when we know it would be advantageous, when I say we, I mean our society, witness all of the discussions of the last, I don't know, decade, half century, century about some form of universal health care. But when treatment won't do any good, when it's futile, that seems to implicate economic concerns even more. And they may be unconscious, subconscious, not articulated, but they're often there with the family thinking, oh my God, this is costing so much money, we don't want treatment continued. Doctors thinking this is costing so much money, we don't want treatment continued because it's going to affect our bottom line in the hospital or the other way around. Full steam ahead. I've got health insurance. I've got Medicare. What do you think it's for? It's for treatment and I want treatment. So it's not clear which way economics cut, but they're often underneath many of these problems and they complicate them. Uncertainty at the case level. Uncertainty about facts. Uncertainty about diagnosis. Uncertainty about treatment prospects. Uncertainty about the patient's preferences. Sometimes uncertainty about the surrogates preferences. Those people change their minds. Sometimes we change facts. Sometimes not. And sometimes we don't even know our preferences until we're called upon to express them and even then we can be confused. Just give you a simple example. The last time you went to buy a cell phone, you weighed the pros and cons of the Samsung Galaxy and you weighed the pros and cons of the iPhone and you compared them to each other and then you said, jeez, I still don't know what to do. Well, you ultimately made a decision. Not everybody didn't know what to do, but some people still didn't know what to do. Same thing in the medical decision making context. We provide, if we provide patients and families with lots of information, it doesn't necessarily guarantee that they're going to be able to make a decision or that they're going to be able to make a decision that we think is a decision that's in the patient's best interest. So uncertainty plagues the whole field of end-of-life care as it does medicine as it does life. Poor communication. This is a huge topic. I'm sure you've probably had many other grand round sessions or case conferences, teaching sessions in medical school about talking with patients. I'm not going to get into that today, but I'm merely going to point it out as a very important factor in futility cases. If there is poor communication. For example, if the doctor goes to the family and says, your mother has a brain tumor, it's stage four, there's really not much to do, do you want everything done? Or with CPR, the classic case. If your mother's heart stops beating, do you want us to restart it? If you ask the wrong question, you are much more likely to get an answer that you're unhappy with than if you ask the right question. Emotional factors complicate these decisions as well. These are very, very fraught situations, not just on the part of the family, but of the health care team as well. And finally, what I call re-socialization of doctors. In the bad old days, doctors were socialized to make decisions for patients. In the contemporary era, doctors are socialized to let patients and families make their own decisions. The consequence of this sometimes is that doctors don't want to make decisions. They don't feel it's their role to make decisions, or recommendations even, if not asked. And I am convinced that what patients and families want from doctors, as much, if not more, than treatment, is recommendations, advice. How many times have you heard someone say to you, what would you do if you were in my position? What would you do if this was your mother? It doesn't mean they'll necessarily follow it, but they want to know the recommendation and the reasoning for it. So what do we need to do to move towards more consensus on how to treat these cases, in which patients and families are saying, I want this, I want that. And doctors and nurses and other members of the health care team are saying, you know, that's really not such a good idea. Whether saying it to themselves, maybe not to the family. How do we try to get a convergence on how to handle these kinds of cases? Well, I suppose that's really why I was invited today to give you an answer to that question. But guess what? I don't have an answer any more than anyone else. I've got a few thoughts about, oh, that's okay. This is trite. I couldn't come up with anything that wasn't. We need to understand shared decision-making. Now, maybe that's not trite. Maybe it's been hammered home to you that you have to engage in shared decision-making, but you don't really know what shared decision-making is. There hasn't been a good role model for it. But it involves many of the things that I talked about before, good communication, making sure that patients and families have accurate information. What kind of information? Information about options, information about prognosis. The problem, though, is that more information doesn't always solve the problem of making a decision. Sometimes it makes it more difficult to make a decision, either because of an overload of information, intellectual limitations on the decision-makers part, or whatever, implement shared decision-making. Make sure that the family and the patient knows that just because you're not going to administer some very serious cutting-edge kind of treatment, or indeed some very well-accepted kind of treatment, such as ventilatory support, you're not going to abandon the patient. That the patient is going to be made comfortable. And I really think that we need to speak more in terms of comfort care than palliative care or hospice. Great concepts. Names are perfectly fine. The problem is, over time, they take on connotations which patients and families find objectionable. To many people, hospice, palliative care mean death sentence. Now, maybe this just means we've got to change our terminology every five years. But maybe a phrase like comfort care wouldn't be such a bad one to try to use because the average person knows in a general way what that is. I don't want my family member to suffer. I want them to be comfortable. I don't want them to experience pain. And there's aesthetic issues as well. Patients are moaning, delirious, things like that, very upsetting to the family. And those kinds of things I think would come under the heading of comfort care. So it's comfort care not just for the patient, but perhaps for the family as well. I'm eager to hear what you have to say about consensus about feudal medical treatment and whether you think we can reach one at some point. But that's the extent of my wisdom, so to speak. I'll put it in quotes about feudal medical treatment. Thank you. As a physician, we do treatment, operation treatment, or take measures to either make the patient better or prevent death. That's what our basic thing we prepare. So for example, we give chemotherapy and we find out that it's not effective with discontinue. We give antibiotic and we find out it's not effective with discontinue. So sometimes we put the patient on a respirator to prevent death and we find out it's not useful. So some people consider that discontinuing this respirator is hastening death. And I must say I just don't understand that aspect clearly and I just want to know your personal view and not based on legal issue, based on moral issue. If your personal view is yes, why and if it is no, why? Well, I'm not sure what my personal view is about that, but I think that the phrase hastening death invokes connotations of complicitness. That somehow the doctor is complicit in the patient's death. And as I said before, it's really a causation concept. It has caused the patient's death. The area of causation is one which philosophers have a field day with and they are about as clear on that as we are on futility. So it's just I think an emotional connotation to the word that probably is affecting you differently from the way it affects me. I'm not disturbed by it. I tried to substitute the word hastening for killing because that is not a nice word. And we all know that we don't generally speaking like to kill things. All other things being equal, we'd rather not. But inaction means that death will occur sooner in some cases. So that's a hastening of death. I try to look at it factually in a temporal sense that if we kept the patient on the ventilator, death would occur later. If we remove the ventilator, it'll occur sooner. The choice between the two is a moral decision. Best I can do I think. Thank you for that thoughtful discussion. I'm curious about what you might think of the designation medically inappropriate for treatment that doesn't rise to the level of futility but nonetheless violates some sort of professional community standard. And if it's a valid designation, what degree of deference do you give to that designation when it comes to withholding the drug? It's like halfway between helpful and futile or part way, if not half way. Go ahead. I'll think about it while you talk. I thought that was the end of your... It is. I wanted to ask how the courts have done on this question of utility leaving aside Texas which has its own sort of approaches. You're talking about the United States courts. Yes. Not Texas courts, but the US courts. Leaving aside the Texas rule, have many courts bought into the futility... You said that futility overcomes autonomy. Which I think you meant that futility trumps the wishes of the patient or the family with regard, let's say, to certain kinds of treatments. And Texas has accepted that. Have other jurisdictions... Very unclear. There have been a very small number of cases. On the classic right to die cases, right to refuse medical treatment that results in death. Between 75 and 90 there were something like 50 to 100 cases in American courts. That's still not a huge number. Considering how many people die each year, it's a very small number. But futility cases in American courts between 1990 and now, 25-year period, I doubt there's more than 5 or 10. And most of them have not been decided by appellate courts. They've been decided by trial courts which are not binding precedent. And most state legislatures have not acted on this with the exception of Texas. And to some extent with regard to do not resuscitate orders. But what I see happening is that individual medical staffs are trying to work these things out for themselves. And that's where we might... Because I would like to evade, but I don't think I should, issue of medical inappropriateness. Because I don't really have a good response to your question, but I think it's an excellent question and one that bears addressing. So that if a hospital is going to develop a policy to deal with these kinds of issues, it's got to look really at a spectrum, not just at two points. Which is almost always the case. So, you know, I appreciate the emphasis on futility, but I'm not convinced that the courts have even defined what dead is. You know, the problem with the teenager from last year who was declared dead from a medical standpoint, I kind of feel like we actually need to get that straight in a way before we even discuss what things are futile and what aren't. Because, you know, for all intents and purposes, everything that's being done to her is futile if you accept that she has met the criteria for being dead. Yeah, that's true. And there have been a number of cases involving patients who've been determined to be dead by medically accepted standards and legally accepted standards in which the family has insisted upon continued treatment. And those cases have gone to court and almost all the time they have concluded that there is no obligation to continue to provide medical treatment to someone who meets the criteria for death. One of the problems, though, with a lot of those cases is the person claiming that treatment should be administered was the one responsible for the patient's condition, child abuse cases. Father beats the child, child's dead on a ventilator. Father doesn't want the child to be declared dead and taken off the ventilator because that means a charge of murder rather than child abuse or something else. So it's a very murky area there, too. There was a good deal of discussion around the passing of the Affordable Care Act about death panels and reimbursing physicians for having these end-of-life discussions. This was something that obviously wasn't eventually incorporated into the ACA, but I wonder what your thoughts might be on potential policy steps on a national level that might push this discussion a little bit further. Good question. I read something in the times in the last three months or so that the Obama administration has revived this at the, I think, at the policy level, not even at the making rules on it, but at the CMS level. So the Centers for Medicare and Medicaid Services are trying to engage in something like this and, of course, would apply just to Medicare, Medicaid, but mostly Medicare patients. I think it's an issue which will come back and which will be dealt with in a more reasonable fashion than it was the last time. It got horribly politicized by opposition to the larger endeavor, the Affordable Care Act. So some people from Alaska who were previously their governor chose this particular target and it was a good one because you could say death panels. We don't want death panels, right? So therefore we shouldn't pass the Affordable Care Act. Well, fortunately it was dealt with in a more responsible way, though not the most responsible. The most responsible way would have been to have left it in, but at least it didn't undermine the whole act. So, but I think this will be back and I think at some point there will be a more cogent public discussion of it. Just a comment on that point. A couple of the commercial insurance companies are now reimbursing for end-of-life conversations. That may be actually more material than policy. Yeah, that's very good, right. It's a phenomenon that started about six months ago quietly. If you Google it, you'll find it hit about 10 to 12 weeks ago and some of the others are beginning to follow suit or at least consider it as part of their reimbursement. Yeah, and of course there's the issue of what's their motive in doing that. And that was my point about economics being involved in all this. You might get the right result for the wrong reason. That's always been my point of view, too. So I think all these questions have to do that end of, are talking about what the intervention would look like and who the actors would be. Would it be payers or would it be the legal system? So I have that question more directly. You mentioned we don't have a great sense of a right to healthcare. Our fix for that was maybe ACA and trying to figure out what people should have in their health insurance plan. We tried to have the end of life sort of discussions, but that was pushed down. So what level of intervention do you think is going to happen? Meaning that if we, the problem is created because we don't have a sense of core values of what the profession should do. The profession can't handle it by itself. Of course we don't want to talk about these cases either. And the policy was killed. So where do you think this is going to happen or can we function actually without and just continue as we are? Well, yeah, we could continue as we are muddling through, but I think there are some factors working against that that haven't been as strong in the past. And two that occur to me, one is economics. And I think that the costs of healthcare today, the issue of extreme cost of healthcare is a much better known public issue. And I think there's more willingness to have a discussion about that and about the role it should play in medical decision making. The other one, though, is demographics. And I believe, it's a hypothesis, I don't know how we'd ever prove it right or wrong, that the baby boom generation are experiencing their parents' mortality first and then other relatives close up and then their own. Will create a shift in public opinion that will help to change law and policy in this regard. Will it happen? I don't know. But I think so. Good observation, gentlemen said it's changed everything else for the last 50 years. I think the courts were successful when you pointed out early in the talk that they really didn't want to be burdened with these bedside clinical matters and indicated their preference that these be resolved at the institutional level, at the patient care level. That has been a brilliant and effective policy decision looking across the country. I think so. It's worked itself out in different ways, in different places, and some better than others. But as a consequence, I think it's been less contentious than trying to impose by fiat a way of deciding these kinds of things. Fascinating. Alan, I want to thank you so much. Well, thank you.