 Good afternoon. On behalf of the McLean Center for Clinical Medical Ethics and the Grossman Institute for Neuroscience, Quantitative Biology, and Human Behavior, I welcome you to the first lecture of spring quarter in our 2015-16 lecture series on neuroethics. This lecture series was organized by John Moncel, the director of the Grossman Institute, Peggy Mason, professor of neurobiology, and Dan Salmezy from the McLean Center. It's now my pleasure to introduce today's speaker, Dr. Robert Trug. Dr. Trug is the Francis Glessner and the lead professor of medical ethics, anesthesiology, and pediatrics, and the director of the Center for Bioethics at Harvard Medical School. Dr. Trug received his medical degree from the University of California at Los Angeles, and his board certified in the practices of pediatrics, anesthesiology, and pediatric critical care medicine. As the director of the Center for Bioethics, he has overall responsibilities for the center's many activities, including the Master of Bioethics Graduate Program, the Bioethics Fellowship Program, required course in medical ethics and professionalism for Harvard medical students, and the Center's many workshop seminars and public fora. Dr. Trug also practices pediatric intensive care medicine at Boston Children's Hospital, where he has served for more than 25 years, including a decade as chief of the Division of Critical Care Medicine. Also at Children's, he is the executive director of the Institute for Professionalism and Ethical Practice, where he creates and teaches highly interactive seminars to enhance the relational and communication skills of clinicians. Dr. Trug has published more than 250 articles in bioethics and related disciplines. He authored current national guidelines for providing end-of-life care in the intensive care unit. His books include talking with patients and families about medical error, a guide for education and practice in 2010, and death dying and organ transplantation in 2012. Today, Dr. Trug will give a talk entitled Brain Death, Getting It Right for All the Wrong Reasons. Please join me in a warm welcome for Dr. Trug. I've had the honor of speaking here at the McLean Center on several occasions now, and it's always a pleasure, so thank you for being here. I thought I might begin by just telling you how I got interested in this topic, because I actually know exactly when it happened. It was in 1982, and I was a pediatric resident at the University of Colorado, and I was doing my ICU rotation, and my attending at that time, Dr. Gilman gave the morning talk on brain death, and he reviewed how you make the diagnosis of brain death, and I dutifully wrote it all down. But I remember thinking at the time, this is interesting, here there's a person who's hard as beating and his chest is going up and down, and yet we do these tests and we say that they're dead. And it struck me that maybe this diagnosis is a little different than diagnosing acute kidney injury or something, and I puzzled about it at the time, and it stuck with me, and since has become really kind of a lifelong interest. Now, you know, in many cases, maybe most cases, deciding whether somebody is alive or dead is really rather straightforward. But there are a small number of cases where it can be uncertain and yet very important to know. And for the munchkins in the Wizard of Oz there was that moment. You may remember when at the beginning of the movie the house lands on the wicked witch of the east. And the munchkins are very concerned, feeling that they have to verify it legally, that she's morally, legally, ethically, physically, spiritually, most reliably and undeniably dead, and so they needed to have an expert to tell them if this was the case. And in munchkin land they did, that was the coroner who said, I've thoroughly examined her and she's not only merely dead, but she's really most sincerely dead. Now, in the real world, our Wizard of Oz moment came in December of 1967, when Christian Bernard performed the first heart transplant in Cape Town. And he came out for the press conference after the operation and there was an astute reporter there who asked him, you know, well, what about the donor? When you took her heart, was she already dead or did you kill her when you took out her heart? And Christian Bernard was not known for being good in front of crowds and he kind of stumbled through that question. But a lot of people recognized at that time that that was a very important question. And one of those people was Henry Beecher, who was an anesthesiologist at Massachusetts General Hospital. He knew that was a really big question. And for those of you with aspiring careers in bioethics, you know, I've often noticed that people who have successful careers are often those who recognize really big questions when they come up. And so he went to the Dean of Harvard Medical School and he said, I'd like you to make me the chair of this ad hoc committee. And in a remarkable short period of time, less than eight months, this committee met and they published this paper, which was really, at least in the United States, the first paper to propose this concept of brain death. And fast-forwarding a few years in 1981, then we had the Uniform Determination of Death Act, which is now essentially the law in all 50 states. This has an individual who sustained either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem, is dead. I say in almost all states, because there's a little bit of variation, a few states most notably New Jersey have exemptions for this, so that in those states one could choose not to be diagnosed as dead by neurological criteria. So we've got these two ways of diagnosing death, and these correspond very nicely with our two main pathways now for organ donation. So in the brain death pathway, whoops, let's see here, yeah, in the brain death pathway over here, death is diagnosed on the basis of the irreversible loss of all brain function, and the organs are removed with virtually no ischemic injury, so it's the best possible conditions for the organs. And then down the right side, we have donation after circulatory death, or the DCD pathway, where death is diagnosed on the basis of the irreversible loss of all circulatory function, and organs are removed two to five minutes after the onset of cardiac arrest. I say two to five minutes because this varies depending on your institutional protocol. Now you'll notice that both of these are predicated on the question, is the patient dead? So why is that? And it has to do with what's known as the dead donor rule. So the dead donor rule isn't actually a law that's written anywhere, but John Robertson, a number of years later, coined this term as kind of a summary of the ethical assumption that we make in organ procurement. And so there's a couple of different ways you can frame it. We could say, for example, the physicians may not cause death when procuring vital organs for transplantation, or that vital organs for transplantation may only be procured from patients who are dead. And so we're gonna come back and talk about this in more detail. Now, I hesitated before showing this next slide, but I am gonna show it because it's a complicated slide and it's gonna be the hardest slide of the talk, but it really lays out in a nice way, a schematic of how we frame questions around defining death. And philosophers, Karen Gervais and others back at the beginning of this debate said it would be helpful if we had three levels of thinking. On the left, definitions are broadest understanding of what it means to be alive or dead. In the middle, the criteria we're gonna use to fulfill that definition, and over on the right, the tests that we're gonna use to fulfill the criteria. And I've included the two definitions that appear most often in the literature on this. Now, I'm not including theological understandings like the departure of the soul from the body or those sorts of things. This is really within the realm of secular thinking in bioethics. The top one there is our sort of official position on this. All of our laws and orthodox thinking about brain death relate to the top definition, which is that death is the permanent cessation of the functioning of the organism as a whole. And then there's the two different criteria that we use. One, being the irreversible cessation of circulatory and respiratory functions, the test being two to five minutes of pulselessness, and then the second one being the irreversible cessation of all functions of the entire brain, including the brainstem, and the test being those that we do for diagnosing brain death, which I'll review. There is another definition, which has been espoused by many over the decades, including most notably Bob Veach at Georgetown, that we should define death in terms of the permanent loss of what is essential to the nature of humans. So it's a diagnosis that really just applies to the human species, and he would argue that what's essential to us is unconsciousness, so the criterion is irreversible unconsciousness, and the test that we would use would be exams and diagnostic testing consistent with the permanent vegetative state. Now I want to show you this because I'm going to argue that there's a lot of problems with one on the top. And yet I suspect that many of you who have grown up comfortable with the idea of brain death actually hold the bottom view, whether you know it or not, that what makes you comfortable with brain death is that these patients are never going to wake up. You can ask yourself this as we go through the rest of the talk. I just would point out that if that's the view you hold, it is the case that there's no jurisdiction in the world that actually recognizes that as a definition of death. It may make procuring organs from brain dead patients ethical, but not because they're dead. So let me move now beyond this and talk a little bit more specifically about a critique. So let's look first at the brain death pathway, and for those of you who aren't familiar with it, here's how we diagnose brain death. We're at the bedside, we show that the patient is comatose, the certain brainstem reflexes are absent like put shining a flashlight into the eye to see if the pupil constricts, showing that the patient has no respiratory drive and that's the apnea test. And then we have to know that there's an explanatory cause for what we're seeing and that there's nothing going on that could be reversible like a drug intoxication or things like that. So there's a lot of detail on this, but that's the general idea. Brain death is largely a clinical diagnosis. In most cases we can do the exam entirely at the bedside pretty much solely on clinical findings. When clinical findings are unreliable, then we turn to ancillary testing like EEG, brainwave testing, blood flow studies, that sort of thing. I should say that to my knowledge, there has never been anyone who's been correctly diagnosed as brain death who has ever regained consciousness. So I think we'll take that as sort of an anchor point in the discussion that follows. But the question still remains here. Why is brain death death? So Jim Bernat, neurologist at Dartmouth, has really been the lead person at developing this argument and began with this seminal paper in 1981, the same year that the UDDA was enacted on the definition and criterion of death. And as I showed you in that earlier slide, he used this as the definition of death. We define death as the permanent cessation of functioning of the organism as a whole. And this actually has a long tradition in scientific thought. Going back, you know, more than 100 years, Claude Bernard in France, Walter Cannon at Harvard who coined the term homeostasis in the 1920s and continuing through to the President's Council on Bioethics in 2008. So it's a well-developed tradition and way of thinking in the scientific community. Essentially seeing life as being a state of a homeostatic equilibrium, where life and death can be understood and defined in terms of thermodynamic concepts. And the idea here is that living organisms are distinguished from the inanimate world by their use of energy consuming processes, ATP and all those things that we learn about in medical school to oppose the entropic forces and therefore maintain a state of homeostasis. And one of the nice things about this from a scientific perspective is that the definition applies across the biological spectrum. You know, we can talk about an amoeba that has integrated functioning of the organism as a whole to plants, to animals, to humans. You know, this was my attempt to kind of draw the picture of it, but so on the left-hand side, this is a state that we're normally in when we're alive where we have a balance between these homeostatic and entropic forces. And that maintains the organized function that we have. But at some point, our dying process begins, the homeostatic forces diminish, the entropic forces take over, and at some point, there's a point of no return where this can't be reversed and that would be the moment of death. So how did Burnett use this back in 1981? He wrote the criteria for cessation of the functioning of the organism as a whole is the permanent loss of functioning of the entire brain. Why? Because the brain is necessary for the functioning of the organism as a whole. His idea here was that the brain is kind of a command central for the body. And that if we remove the brain, the body just disintegrates. It falls apart. And what was his evidence for that? He pointed out that destruction of the brain produces apnea and generalized vasodilatation. In all cases, despite the most aggressive support, the adult heart stops within one week and that of the child within two weeks. Now, I believe this was probably correct in 1981, but I believe there's no doubt that it's no longer true. Brain dead patients may retain integrated functions and can quote unquote live for many years, longest case being more than 20 years. So what happened between 1981 and the present day? A lot of it had to do with improvements in intensive care medicine. And so a popular analogy has been made to high cervical quadriplegia where the spinal cord is transected up in the neck. The kind of an accident that Christopher Reeve had when he was thrown from his horse. So both high cervical quadriplegia and brain death involve the sudden separation of the body from the brain. And the body doesn't like that very much. It kind of goes a little crazy in a state called spinal shock which I believe back in 1981 was probably pretty much uniformly fatal. But one of the things that the ICUs do is we become kind of artificial brain stems. And so we can control those swings in vital signs very well in the ICU. And it turns out that if you can get these patients beyond the first couple of weeks, they often will stabilize. And then as Christopher Reeve did, live for many years. And we find the same thing is also true for patients who are diagnosed as brain dead. Alan Schumann, a neurologist who has written about this has said, what is clear from a comparison with spinal cord injury is that the mainstream assertion that brain death represents the biological death that the human organism as a whole is untenable. And in fact, we have lots of examples of this. So every year for sure, maybe more than once a year, we have tragic stories like this of a woman who is pregnant who becomes brain dead during her pregnancy and the family asks if she can be supported for up to several months in order for the baby to be delivered. And so you see headlines like this. Brain dead Canadian woman dies after giving birth to boy. The problem is this is not factually correct because if you think about what actually is going on there, the headline should have read Canadian woman who has been dead for six weeks gives birth to a baby boy. Only you'll never see the title framed in that way because it seems highly implausible to us that somebody who was dead would be able to actually gestate a fetus for weeks or even months. And I think it is highly implausible. And that's because that in these cases, these patients who've been diagnosed as brain dead do retain integrated functions, enough so that they can actually gestate a fetus. One of the most dramatic cases that's happening right now in our country, you may remember the case of Jehi McMath, a young girl who had a hemorrhage following a tonsillectomy at Oakland Children's Hospital in December, 2013. She was diagnosed as being brain dead, but the family refused to accept that diagnosis. And so long story short, because there was a long story there, she ends up being transferred to New Jersey where she gets a tracheostomy and a feeding tube and she has been there ever since. I just looked on the internet and there's an update from a couple of weeks ago that she is still living, in a sense, right? She's legally dead, but she's growing. She's gone through puberty. This picture's a little misleading, by the way. It makes it look like she's breathing on her own. If you look closely there, you can see right here, this is the ventilator, which is attached to her tracheostomy, so she cannot breathe on her own. But it makes the point that patients with this diagnosis can retain this integrated functioning for long periods of time. All right. Let's look down the right-hand side of that pathway. So the DCD pathway. So what happens in DCD? Well, a decision is made to withdraw life support from a patient who is expected to die within 60 minutes. Why is that? Because the problem is, if patients have a prolonged lingering death, the organs gradually become ischemic and it's thought that if it takes longer than 60 minutes for the patient to die, the organs will not be usable. So that's where that cutoff comes from. The family has then informed that DCD may be an option. If the family agrees to donation, then life support is withdrawn, either in the ICU or in the operating room, depending on the program where you're working. And if pulselessness occurs within this 60-minute window, the patient is declared dead after an interval of two to five minutes of pulselessness and organs are procured. So let's ask the question. Are DCD donors dead? So I would say there's no disagreement at all that at least some DCD donors could be successfully resuscitated after two to five minutes of pulselessness. Hence by definition, the pulselessness is not irreversible. But Jim Burnett has argued that permanence should legally substitute for irreversibility. And what he means by that is that all of these patients have do not resuscitate orders. So no one's gonna try to resuscitate them. So after two to five minutes, we can be sure that the heart is not going to restart on its own. So therefore, the pulselessness while not currently irreversible will soon become irreversible. And therefore, we can consider it to be irreversible. Now, I have some logical problems with this. I think it confuses the concept of dying with death. I think it's totally fair to say these patients are dying. But until the pulselessness has become irreversible, they're not yet dead. And I would say that it mistakes a prognosis for a diagnosis. Let me give you a couple of quick thought experiments to sort of make my point. So imagine a young athlete suffers massive brain injury in an automobile accident. His family agrees to DCD donation. Life support is withdrawn and he is pulseless for two minutes. Is he dead? Well, in many centers around the country, yes. He would be declared dead at that moment and surgical procedure would begin to remove his organs. But now imagine a young athlete who suffers a cardiac arrest while playing basketball. No one initiates CPR. EMS is called and arrives two minutes later. Is he dead? I think most of us would probably say no. That the EMS people should try to resuscitate him and more likely than not would probably be successful. So you can see why I use this thought experiment. If there's something that's, if there's some biological fact about being dead, then how could it be the case that in these two biologically identical patients, we would consider one of them alive and one of them dead? I think this is one of the problems that comes with sort of messing with this idea of irreversibility. And to carry it further, a second thought experiment, consider again the young athlete who is a DCD donor and who has been declared dead after two minutes of pulselessness. Now, we often do this with the family in the room and say to the family, two minutes has passed. Your loved one is now dead, but imagine in a moment of grief, his mother insists that he be resuscitated. Now, whether that would be a good idea or not, it won't go there, but imagine that they do try and imagine that they're successful, which would not be implausible. What would we say here other than that he's been raised from the dead? He's been diagnosed as dead and now he's alive. I don't think there's any rule about this, though I think most of us have the assumption that death is an irreversible state and that if somebody was diagnosed as dead and then isn't dead, that the problem was with the original diagnosis, that it must have been wrong. So it's these kinds of cases that make me doubt that, going back to that table I showed you, that the tests that we're using to diagnose death as the irreversible cessation of circulatory function actually reflect our underlying definition. So my conclusions to this point would be that our criteria for declaring death in organ donors does not conform with a biological reality. Brain dead describes a patient who may still be alive in this biological sense by the definition I showed you, but is severely brain injured, will never regain consciousness or breathe without a ventilator. DCD candidates are considered dead because they are dying and will soon be dead if no one attempts resuscitation. And now here's one of the implications that is concerning, well, not concerning, but we'll probably make some of you pause, is that from this biological perspective, the conclusion would be that we routinely violate the dead donor rule in our current practices of organ procurement. As we go forward, I'd like you to at least entertain that thought in your mind, because so much of what we do is so firmly grounded in the belief that we do not take organs from people who are not dead. Now, so I've been talking about this for a long, long time, probably more than 20 years. I've debated Jim Bernat here, here at the McLean Center back in 2012 and in other people and many other venues, including sort of off the record discussions. And no one has ever disagreed with sort of the factual basis for the conclusions that I'm showing you here. There's never been the argument that you've laid out is wrong in the following way. That's never been the critique. The critique of these conclusions is, well, what should we do about it? And is it okay if we just ignore it? Because our system works okay. No one seems particularly upset about it. We save a lot of lives. Why rock the boat? And so what I'd like to do in the remaining few minutes of my talk is, first of all, I think that that's not an unreasonable position. I mean, I, you know, maybe as an academic, maybe just kind of who I am, I like to think that we're open and transparent and honest about how we frame things like this. But it's not absolutely necessary and the system does work pretty well. But I do think that there are other ways of thinking about it that don't actually jeopardize any of what we already do and actually could work to improve the system. And so let's talk a little bit about where to go from here. And to begin, let me deconstruct, if you will, some aspects of the dead donor rule. And let's start with this idea that physicians may not cause death. I'm using causing death rather than killing here. We could say physicians may not kill when procuring vital organs for transplantation. I use causing death not to use it as a weasel word. It's just that killing has sort of a moral overtone to it that causing death doesn't. And so I think this may be a more neutral way of talking about it. So what about that? Well, there's been a very strong sentiment in bioethics that doctors must not kill. Mark Siegler co-authored on this famous article from 1988 in JAMA. So it challenges us to ask, is it always wrong for doctors to cause death? Is it always wrong for doctors to cause death? Well, we know that there are now debates about physician aid in dying in euthanasia. And we know that there are debates about whether physicians cause death or merely allow patients to die when they withdraw life-sustaining treatment like ventilators. And we could go round and round on that. And I like to go round and round on that. It's fun. But let's put that to one side for the moment because the point I wanna make is actually much, much less controversial. I think the notion that clinicians are passive actors, that is, curing when possible, allowing to die when necessary, is no longer really a tenable position. Decisions and actions by clinicians are often determinative in whether and when a patient lives or dies. You know, if I'm taking care of a child in my intensive care unit with a severe traumatic brain injury and we sit down with the family and we talk about it and we decide to withdraw the ventilator and that patient dies, they die. On the other hand, if we decide that we're gonna go take G-tube and rehab, they might live for years. We're not passive actors in this process. I think that the aphorism of first do no harm is no longer helpful. So many of the things that we can do now in medicine have the promise of doing great good, but they also have the promise at times of doing great harm. We can't have one without the other. I think this is an area where medicine is just advanced at a pace that is outstripped some of these old ideas about the role of doctors and nurses. And so I'd like to say, and I think in a, I hope in a less controversial way, that whether an action by a physician causes a patient to die may be ethically relevant, but it is never or at least hardly ever solely determinative of whether that action is right or wrong. So if we look at, where I'm going with this, is if we look at physicians playing an active role in causing the death of patients in the process of procuring their organs for transplantation, I don't think that's necessarily a non-starter from an ethical point of view. And I think it's something that is pervasive, that the ideas are pervasive within medical culture at the present time. Let's look at the second part of the dead donor role. Vital organs for transplantation may only be procured from patients who are dead. So again, this sort of hard point that if the critique I've presented to you is correct, then we are already doing this routinely. But I do want to acknowledge that there's a certain wisdom in the dead donor role that certainly we don't want to harm anyone in the process of procuring their organs for transplant and making sure patients are dead before we remove their organs is one way of being sure that we are not harming them. But I'd like to ask, is death actually a necessary condition for protecting patients from harm? And let me tell you about three patients that reflect on various aspects of this. So the first was a 43-year-old man with high cervical quadriplegia ventilator dependent. After long deliberation and counseling, he requests withdrawal of the ventilator, which is going to absolutely lead to immediate death. He cannot initiate breaths on his own. His strong desire is to donate as many organs of the highest quality as possible. Currently, his only option is DCD donation. So his ventilator would be withdrawn, we would wait for his heart to stop, we would wait another two to five minutes, and then we would procure organs. And because of the necessary ischemic injury that occurs, typically this results only in kidney, in kidneys being viable for transplant, sometimes liver. But it's a limited pathway. As an alternative with his permission, donation of all of his organs could occur under general anesthesia. And usually when I put that up on the slide, there's a few gasps in the room, like how could you do that? But I'd like you to reflect on that a little bit. This would be done at the patient's request, the patient wouldn't be harmed. It would maximally respect his wishes, in that it would result in more organs of higher quality. And again, I would come back and say, if you're not convinced that patients diagnosed as brain dead are actually dead, then this is what we're doing right now anyway. Second patient I'd like to tell you about is one I took care of. This was a little eight year old girl a few winters ago who was out with her mother, snow blowing by the house, and unfortunately her parka got caught up in the snow blower, and she strangled before her mother could get her free. So they came to my ICU, and of course we did what we could to resuscitate them, but the outcome was dismal. And she wasn't brain dead, and the family asked if she could be a DCD donor. She went down to the operating room, had the ventilator withdrawn, but she didn't die within that 60 minute window. So she had to come back to the intensive care unit where she died a few hours later. Darshak Sengavi, who's a pediatric cardiologist and reporter writing for the New York Times magazine, interviewed this family. And he wrote, Paul has some difficulty understanding why if Jaden was going to die anyway, she could not have been put under general anesthesia, undergone surgery to donate her organs, and then been declared dead. Dr. Sengavi explained to him, well they can't do this because of the dead donor rule. We can't remove those organs until after she's been diagnosed as being dead. He commented, there was no chance at all that our daughter was going to survive. I can follow the ethicist's argument, but it seems totally ludicrous. Now I'm not saying the dead donor rule is totally ludicrous. I think that there's a lot of good reasons why we have that, but I'm questioning whether it's absolutely necessary. The third case I want to tell you about is what I think is really a workaround to the dead donor rule, and it's a emerging process called imminent death donation. And this was one of the first cases that was public. Concerned a man, Bob Osterreiter, who was at the University of Pittsburgh in 2012, 52 years old, devastating stroke, family agreed to withdrawal of life support, all of his life he had expressed the view that he wanted to be an organ donor. But he wasn't brain dead and he wasn't a DCD candidate because they didn't think he would die within that 60 minute window. And so his family was told, no, we can't do it. But his wife in particular persisted. And so there's gotta be some way. I mean, this was such a waste. He's going to die. Why can't he help save somebody else's life? And so they came up with the idea of why couldn't he be a living donor and do a living donation of one kidney and a piece of his liver, which would not kill him, okay? And then after the operation, go back to the ICU, have his ventilator withdrawn and die. This was a big medical center, University of Pittsburgh. Went to their ethics committee, went to their hospital administration, all of whom supported it. Reasons, because it was compatible with the patient's wishes. There was no harm to the patient and notably it conformed with the dead donor role. Ultimately, however, the donation was denied. And it was denied because living donation typically requires first-person consent. The person making the donation has to give the consent. Makes a lot of sense. If I'm gonna give my kidney to my wife, I'd like you to be talking to me. But in this case, it seemed odd. And in fact, when I've spoken to his wife, she said, you know, I had the authority to make the decision to withdraw the ventilator. But I don't have the authority to say that he can be an organ donor when this was something that he had expressed over and over throughout his life. The other reason that they didn't do it was because his death would have been considered a living donor death, which would have been a black mark on the transplantation program. Now, this has actually come a long way. And there have now been several imminent death donations that have been performed. And I know that UNOS is looking for ways to actually make this a pathway within the system. But I'd like to point out, you know, if you take this to its logical conclusion, what might it look like? So imagine, we're gonna use imminent death donation. A living donor is taken to the operating room and placed on cardiopulmonary bypass. All the vital organs are removed, including the heart and the lungs. And then taken to the ICU, where life support is withdrawn. Would this comply with the dead donor rule and current law? And I think arguably it would. It would be done at the request of the patient. The patient would be free from pain or suffering. Removal of the organs would not cause the patient's death. And the doctors would not be killing the patient and procuring the organs. I'm not necessarily advocating this. The reason I'm using this is because I think it shows how contorted our thinking gets when we have this unwavering allegiance to the dead donor rule. Let me just, in closing up here, tell you a little bit about a public survey. I show you this because when I give talks like this, there's a lot of people in the audience who say, why are you giving talks like this? Nobody would ever think it's okay to take organs from living donors. This is never gonna go anywhere. There'd be absolutely zero support for it, right? And so I show this survey a little bit to counteract that. This was over 1,000 US adults who are presented with the following scenario. Jason has been in a very bad car accident. Before the injury, Jason wanted to be an organ donor. The scenario describes a patient who meets all of the criteria for brain death, that is irreversible, apnoch, unconsciousness. But they create the scenario from the perspective I'm presenting to you here. They describe Jason as a living person. They say that removing his organs would cause his death and that the doctors who did so would be killing him. So as you can see, about 70% of that sample agreed with the following statements. I would wanna donate my organs if I was in a scenario just like Jason's. Doctors should be allowed to remove organs from patients like Jason, assuming consent. And it should be legal for patients just such as Jason to donate organs. Now I know this has all the problems that are inherent in these kinds of survey. But at least in this context, what it shows is that what these people were looking at in deciding whether it was okay for Jason to be an organ donor was his clinical state. The fact that he was not going to ever wake up and was going to be on a ventilator. It didn't seem to matter to them very much whether or not he was dead. And I think there's good ethical grounds for reframing the way we look at organ donation in this way as to what would be reasonable for a patient to be able to say I want to be an organ donor. I wanna be clear, I'm not advocating that somebody otherwise healthy could say I wanna commit suicide and save the lives of six other people. I'm not saying that at all. But for a certain group of patients, namely patients who are irreversibly unconscious and or are imminently dying, I think it's reasonable for them to say that I would want to be an organ donor and for that to be possible. So in concluding here, what's the way forward? I'm not crazy. Some of you may disagree, but I don't think I am. I do understand that societal change is incremental. We're not gonna walk out of this room and suddenly change all of the standards that we've used for many, many years. But I do think we are seeing an evolution in our thinking about these issues. I also don't believe there's any crisis here. Our current practices, that is brain death or DCD, I believe they do violate the dead donor rule, yet they conform with other foundational principles, such as respect for autonomy and non-moleficence. We're not gonna take organs from anybody who doesn't give their permission and we're not gonna do it from anybody who would view that doing so as a harm to them or we would view it as being a harm to them. And I think that practices like imminent death donation, which honor the dead donor rule really in the breach. First of all, I think that they're reasonable options and they also open space for dialogue about the best principles to guide organ donation. And I expect the cases like Johai McMath, Bob Osterreiter and Jayden Tulapa will become more common and as these cases are in the media, it will put pressure on our definitions of death and the dead donor rule. And then finally, from a personal perspective, my own commitments are that our society should be committed to granting individuals the broadest range of freedoms compatible with assurance of the same for others. When death is very near, some patients may want to die in the process of helping others to live, even if that means altering the timing or manner of their death. And in my humble opinion, I think I understand that there are those who strongly disagree with me, I respect you and I believe your views should be respected. But I don't think that they should prohibit denying these kinds of liberties to those who would wish to pursue them. If you're interested in more, this was a book I wrote with Frank Miller on all of this and I'd like to thank you very much and I welcome your comments and questions. Thank you, that's really thought provoking. My question as a layperson is, as a layperson and someone who strongly supports organ donation and I hope to do this myself, there's a slow incremental movement these days to make donation an opt out when you get your driver's license, for example, rather than an opt in, which I totally approve of. I fear that changing the definitions the way you say is going to slow that movement because I think what keeps many people from supporting that sort of thing is the fear that, oh my God, they're gonna take my organs before I'm dead. I've heard that, I don't quite understand it, but I know that that's one of the things slowing people, so what do you think of that? Guys, that's a very good question and I don't really have a great answer for you. The beginning part where I question whether the way we make these diagnosis conforms to a biological reality, I'm just not convinced that it does, so do we, I don't mean this to sound flippant, but do we just keep quiet about that because of the concerns you raise, which are good concerns? I mean, we want people to donate organs and we want to save lives, on the other hand, if that comes at a cost of a certain transparency to what seemed to be the facts to me, where's the balance there and I struggle with that and people will tell me, quit talking about this. We're all about saving lives here and this could actually jeopardize that. I come back and I say, and maybe too idealistic, but I always feel like in the long run, being really open, honest, transparent and telling the truth goes to the best place, but that may or may not be the case here and so I sympathize with your view and I just don't really have a great answer for it. So while I do not disagree with your premise actually, I do think that the devil is in the details, so being in the position of actually diagnosing brain death a lot for the past 16 years or so and reading about this, I have seen that people don't do it correctly and you had a slide that said if brain death is diagnosed correctly, no one's ever come back from the dead, but again, the devil's in the details. People have been pronounced incorrectly and they've come back from the dead. So what I want to ask you is, what is the definition of imminent death? Because I think not defining that opens up a slippery slope, which is what makes me uncomfortable with this idea. Yeah, another great question. So the point here is that the brain really has nothing to do with whether one is alive or dead. It has an enormous amount to do with what we value as people, but cases of completely calcified brains without a neuron to be seen. These patients have maintained integrated functioning for years. That's just sort of, I believe, scientifically correct. So if we remove kind of a neurologic criteria for defining death and say that it doesn't even exist, then we're really kind of back to a cardiorespiratory definition of death. You're dead when your heart stops, which is the one we've lived with for many years. What we would have to do then in order to maintain systems of organ transplantation is to come up with alternative criteria for when you can be an organ donor, which would have to do again with degree of brain injury, which is ethically very relevant, or whether you are imminently dying and whether you've given your permission. So it would shift the ethical justification for organ donation to an entirely different foundation. Yeah, Bob, thanks. So you make arguments that certain things, maybe medicine has passed by and do no harm and things like that, but you continue to use the integrative function aspect of the brain as the principle in which the first two definitions, or at least the first definition, brain death is now questionable ethically. So maybe we're past that as well. Maybe we need to figure out what else we need to define as brain death rather than providing integrative functions. And so it makes that process more ethically justifiable because I think that at least most physicians would feel that our first two definitions that you've gone through, the brain death, DCD, are somehow more ethically justifiable than what you present as the more ethically justifiable that is the imminent death. And I'll just, as a conclusion of the imminent death, and I'll let you comment on both of those, I was on the living donor committee when the imminent death thing came up and there was a lot of pushback. So I'm not sure that UNOS is making much progress on that number one. And I'm now currently the chair of the ASTS Ethics Committee and we are looking at that, but the first sense from the council was stay away from this. So those are just the professional feelings so far of the imminent death. Not that I actually, when this was discussed, I'm actually a proponent of it, but that doesn't really matter when the council of the society says stay away. And the, especially the lay people on the living donor UNOS committee was like, this sounds terrible. Yeah, I'm sympathetic. On the first point, maybe we're using the wrong definition of death, the integrated functions argument. This is actually, if we had more time and we don't, this was actually the conclusion the president's council on bioethics came to in 2008 under Ed Pellegrino's leadership. He said, if we're gonna hold on to the integrated functions argument, the whole thing falls apart. It doesn't work. So they went up and they came up with yet another definition. I didn't go into it because it, I mean, I'll just say it's gotten no traction. I don't think it works either. As far as how UNOS is viewing these things, I think it goes back to the question over here. It's a tough spot. And I don't know how I would advise them. I mean, to just, to say maybe let's ignore it, maybe it's just the right, maybe that's the best way to go. We've got new technologies. We've got this CRISPR-Cas9 stuff, which is modifying pigs. We may be 10 or 15 years from actually having an unlimited supply of pig organs. In which case, we can just say, heck with all this. We'll find an area. Yeah, who cares at that point? So yeah, thank you. Yeah, Bob, thanks again for a great presentation. I have kind of two comments, questions. The first is a little bit what you just touched on. And I like the fact that you frame this by saying this all started because of an organ transplantation. And that's exactly right, that this is a social construction and a legal fiction that's based to get from point A to point B. And part of the difficulty now is the technology underneath it has switched, both point A and point B. And so yeah, we have to redefine our definitions. And therefore, since we recognize that it's social construction, we're not doing this for philosophic reasons, we're not, I mean, then I think we have to look at the practical impact and the practical impact now may be different than in the past. And so consistency across that, which you seem to be frustrated with, I think is a loser. I mean, do we drive on the left or the right? I mean, it's important when you start getting at high speeds and so then we have to decide, but it's arbitrary which side it is as long as we all agree on it. The second point I would kind of bring up on all this is that it seems to me also that in a deeper level, you're concerned that death has to be somehow tied to this biological reality. And I think there's almost nothing in medicine we actually do that way. We say we do it. And in my world of ADHD and learning disabilities, it's more clear I'm not doing it. But I think that's, I mean, it's a little bit of a fiction. Every, all our diagnoses, I mean, we act sure until we find out we're wrong. And so I think that undergirds all of this. Great points, Peter. Let me, let me say, you know, you started off saying, well, of course, this is a social construction. Of course, this is illegal fiction. I can buy all of that. But you say that outside of this room. And that's not what the public believes. The public believes that there is a biological reality to whether you're alive or dead. And when you donate organs, you are biologically dead. And that's not true. So if we could, you know, illegal fiction is that you, you acquire all these rights and responsibilities on your 18th birthday. Everybody knows that that's illegal fiction. It's transparent to everybody. Go out and say that, you know, we're gonna declare your loved one dead here. And you need to know that we're, you know, the law kind of says that, but it's sort of this legal construction that we've come up with in order to enable organ transplantation. That is not gonna fly that well. So again, I'm coming, I agree with everything you said, but I just think take it outside of this room and you're gonna have a lot of problems selling your version of it as much as you are my version of it. Well, my question was actually designed to drive the answer that I think you just gave, which is that is it necessary to maintain an identity between the legal and biologic definitions of death? That is a view that I have endorsed in the past very much, that we recognize this as a legal social construction, which is very reasonable, you know, and permits organ donation to occur. And I've actually advocated for that position and other things. All depends on how I'm spinning the talk. But the thing that always makes me uncomfortable about that is can we be honest and transparent about that as well? You know, there's all sorts of legal fictions. We consider corporations to be persons, but nobody literally believes that a corporation is a person. Would we be misrepresenting what we say death is to acknowledge that it's really a legal social construct? But great, yeah. I really enjoyed your talk and you might, by the end, convince me. As one of the people that usually talks on the other side. And I guess my experience as a PICU doctor, the longer I do this, the more nervous I get about all of this. And the brain death thing is, it was easier to tell families 10 years ago that their child was dead by brain death criteria and they didn't question it and they're questioning it now. I mean, we have seven children's hospitals in the city and we are now routinely going to each other's hospitals, giving second opinions on brain death. And the two times that I have turned the ventilator off on a brain dead child, and they have not been an organ donor, one's heart beat for 45 minutes and the other one for 25 minutes, neither of them ever took a breath. But their heart, and it's really hard to sit there with the parents when you've told them their child is dead and their heart beats for 45 minutes. And we have a child in the unit right now who has auto resuscitated at 30 seconds, probably 10 times. And it gets really complicated. Thanks, Tracy. I get, they give me temporary privileges. I fill out all the privilege work and get temporary privileges. All right. Rainey? Yeah, so it seems pretty clear that brain death is not death. I mean- Biologically. Yeah, biologically. And saying it is wrong biologically because obviously these people are still alive. So it would seem that the next step for you to advocate would be creating an informed consent in which people can say when I'm in a position where I'm no longer able to, where I'm irreversible, I'm never gonna coming back to consciousness. My condition is irreversible. I'm gonna be dead soon. I would like to donate my organs. And so you would have first person informed consent and people could donate their organs. I mean, what's the problem with starting to do that? I mean, the dead donor rule is a paper, right? It's not, it seems to me to be easily overturned, especially if people are giving consent to do it. Love it. I think we go back to the concerns raised over here of for you and me and people in the room, that seems like a perfectly straightforward way to go for a public that's perhaps not that well informed could it lead to a dramatic decrease, for example, in people willing to donate their organs? And you would say, well? Or not, I mean, Or not. Interesting. We're calling these people branded dead and they're not dead. I think if I agree with you, we get more truthful about what's going on, more transparent, people will trust us more. And I think that's just another example of lying to the public. They believe it now and we need to rescind some of the media's lies. You and I are cut from the same cloth, obviously, so, yeah. They're immediately done. Because they never expect you to try to see this quite broad. And you could end up with anybody from the initial diagnosis of a bad disease to somebody who is comatose and we won't even deal with a sort of irreversible part. And that's got strikes me as a big concern for your definition because your expansion of criteria for the potential recruitment pool gets to be very large very quickly. Yeah, I acknowledge the point. I think that we deal with issues like that in other situations pretty well. So you think about, again, my work in the intensive care unit. When is a patient's prognosis bad enough to justify the withdrawal of life support? You know, at some points, families are gonna say, let's stop the ventilator and I'm saying, no, we're not there yet. Or okay, now this seems like a reasonable choice. Those are life and death decisions. Granted, the organ donation piece throws in perhaps a conflict of interest, although, again, I think this is as much a strongly felt wish of patients and families as the decision to stop the ventilator. So I do think that we have some experience with dealing with those kinds of gradations and you have to pick a point on the line. But it's not obviously easy, that's for sure. Thanks, Bob, a great talk. So we're all sitting here arguing or agreeing to a large degree that brain death is a legal fiction. So now let's talk about cardiac circulatory death since we actually disagree whether we're really talking about circulatory death or cardiac death and when we can take organs. So I'd love for you to comment on that, whether what we really mean is that and whether we mean irreversible or permanent. So I think we're all in agreement that it's about irreversible loss of consciousness. But are we really talking about irreversibility or are we really talking about permanence when we're talking about cardiac and circulatory death only because we then remove those organs and they work just fine. So it seems they might be permanently not working in one body, but yet not necessarily irreversible. Yeah. So I tried to give the benefit of the doubt to the traditional view when it came to whether we're talking about cardiac death or circulatory death. And just to orient people, in the case in Denver where they removed a heart from a baby and transplanted into another baby, Bob Beach and others were quick to point out that the baby was diagnosed as dead on the basis of the irreversible loss of cardiac function. And then you move that heart into another chest and it starts to function. Obviously it wasn't irreversible. I mean that was just like A plus B equals C. So that's when there was a move within standard thinking to say, oh no, we're not really talking about the heart. We're talking about the circulatory function overall which is kind of embodied. And I don't have a stand on either one of those. I just thought I would take the one that was more generous to the common view in terms of my critique. The permanence irreversible, I think it's ethically fine to take out those organs at five minutes. This person is dying. That is what makes it ethically okay. They are absolutely dying and will be dead in a short period of time. It's just we're not being totally honest if we're saying that they're already dead. So that's how I would respond to that. Thank you very much. As always I've enjoyed every one of the talks that I've been to. I'd like you to comment on the situation where there's donation after circulatory death in an uncontrolled circumstance and there's actual prevention of resuscitation rather than election to not resuscitate. For instance, when someone drops dead on the street and they are then declared dead but put back on a cardiopulmonary bypass machine to keep heart and lungs, kidney, liver going but they have blockers put in to prevent brain circulation. Because that is being done. That is being done. In the United States and around the world. That is being done. So, and there's so many versions of this but let's make sure we're talking about the same one. So the patient drops dead and is declared dead and after that declaration then don't wanna call it life support but cardiopulmonary support is instituted in order to begin to perfuse those organs again to keep them viable for transplant but preventing blood flow from going to the brain. Yeah. Yeah, and that's right. I can't really tie that into the theme so much that I've been talking about other than to say again that I think to the extent that the dead donor rule is the driving principle for all of this. We end up with very contorted procedures that seem ghoulish to people, number one and there's big concerns about consent in the one you raised as well. Yeah. So I think this imminent death protocol is an innovation. I think this thing over here is an innovation and there seems to be a desire for organs and clever people are coming up with these innovations which are consistent enough with how people feel about things that they get allowed to happen and I expect that'll keep happening. And fundamentally I completely agree with you. I think if we hold fast to principles of respecting persons and their rights to consent or not consent, number one and number two, making sure that people are not harmed in that process with them fully understanding what's at stake, I think if we hold to those core principles then these innovations I think should be explored. But if we don't hold close enough to those principles then those innovations won't take off. Okay. The imminent death. So I was intrigued that the suggestion was one kidney and one liver. If someone's really gonna die in the next 24 hours might not take both kidneys because by the time they're gonna go into kidney problems it's longer than 24 hours. I mean you can see that the slope is just gonna get really... Yes, exactly. Okay. Yup. One lung. One lung? Yeah, you don't die of liver failure in 24 hours? Yeah, exactly. All right. Thank you very much. Thank you. Thank you.