Dr. Robert D. Truog - Defining Death: Persistent Problems, Possible Solutions
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Robert D. Truog
Cardiology
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Timestops
21:00
What is death?
Discussion about the definition of death
31:30
Brain death as a social construct
Neurologist's perspective on brain death being a socially constructed concept
42:01
The role of technology in diagnosing death
Advances in technology and their impact on our understanding of death
52:31
Patient autonomy and the right to die with dignity
Concept of patient autonomy and the ability to choose one's own definition of death
1:03:01
The relationship between brain death and abortion
Comparison between the concepts of brain death and the beginning of life, with implications for abortion debate
Topic overview
Robert D. Truog, MD - Defining Death: Persistent Problems, Possible Solutions
Surgical Grand Rounds (September 4, 2019)
Intended audience: Healthcare professionals and clinicians.
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Transcript
Speaker: Robert D. Truog
you you you you you you you you you you you of what it means to be dead. So if you look at this painting from Rembrandt of the Anatomy lesson, you immediately recognize that that poor guy on the slab there is dead. It comes to you just as quickly as that. And if I were to ask you, why do you think this person is dead? You could come up with a whole bunch of reasons very quickly. It's obvious to you. And this isn't just about people. This extends across the biological spectrum. So I show you Manet's picture here of the rabbit. You again have that immediate understanding that what we're looking at here is a dead organism. What about this person? So if you're a bioethics junkie, you will know that this is Johimic math. We'll talk more about her later. And I will tell you that she is dead. And she's dead by virtue of two characteristics. She's never going to wake up again. She's irreversibly unconscious. And she's never going to breathe on her own. And those two things make her dead. How about this person? This is Nancy Cruzan. She was a woman who had an automobile accident in her 20s and was left in a permanent vegetative state. So is she dead? Well, she has one of the death-making features that Johimic math had. She's never going to wake up. She's irreversibly unconscious, but she doesn't have the other. She breathes on her own. So we consider her to be alive. How about this gentleman? This is Christopher Reeve, who some of the older members of the audience might remember from the Superman movies, a famous actor, who tragically became quadriplegic after a horseback riding accident. And it may seem silly for me to ask you is he dead or not? But in fact, he does have one of those death-making characteristics. He's never going to breathe on his own, but he lacks the other. He is conscious. And so we consider him to be alive. How about this person? Now, I don't know who this is. This is a random photograph off of the internet. But I would tell you that if he were up on 7 South right now and I were standing at the foot of his bed, it would be challenging to tell you whether he's alive or dead. I first of all have to know a lot about his history, how he came to be like this. I'd have to do a very careful neurologic exam. I'd have to do some labs, look for metabolic abnormalities, look for the presence of any sedatives. We probably have to do some imaging, get a CT scan, maybe an MRI. Then we'd most likely wait a few hours and we'd repeat many of those same tests. Have to do all of that before I would be able to tell you whether he's alive or dead. So death is no longer this intuitive idea that it used to be. And the question is when did death become such a complicated idea? And historians will often point to this paper from 1959. This was from French neurophysiologists. The title of the paper was Le Coma d'Apa Say or Beyond Coma. And this was done shortly after the development of mechanical ventilation. And what these scientists were looking at was that they were seeing patients who had brain injuries that were so severe that they would have been absolutely lethal. But for the fact that these patients were put on due a ventilator. And because of that, they were continuing to live for a long period of time. And this was the beginning of this conversation about what's going on here. These are people that are never going to wake up again, but they continue to live. Is this a state of suspended life, suspended death, what's going on? And that conversation persisted from 1959 up through 1968 when there was an ad hoc committee here at Harvard Medical School. And it was led by an anesthesiologist, Henry Beacher, at Mass General Hospital, often referred to as the father of bioethics. And this was just shortly after this, so Christian Bernard performed the first heart transplant in December of 1967. And in doing so, it obviously had international attention. But it raised the question of, where did that heart come from? And was that donor dead when the heart was removed, or was the donor actually killed by the process of removing that heart? And Beacher recognized that this was now an emerging, very critical issue. And so he asked the dean of Harvard Medical School to form this committee. And you'll notice that the title is still fairly tentative. He doesn't say he's actually coming up with the concept of brain death. He says, we have now a definition of irreversible coma. And it's in the subtitle that he brings up this idea about that this might be a new way of thinking about death. This was still just ideas and concepts, though, until 1981 when the American law on death was written. And it's called the Uniform Determination of Death Act. And it's actually very short. It says, an individual who was sustained by either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem, is dead. And that a determination of death must be made in accordance with accepted medical standards. So in the next few minutes, I'm going to refer to cardio respiratory death as the irreversible cessation of circulatory and respiratory functions and neurological death as the irreversible cessations of all functions of the entire brain. And the question I'd like to explore with you is what is the relationship that these two ways of determining death have to this intuitive idea of death, biological death? So let me define terms a little bit here. What do I mean by biological death? Again, our common sense understanding of death is biological. The idea is that living entities use energy to maintain homeostatic equilibrium and function. And when that homeostasis is lost, entropy prevails, and death occurs. To make it a little bit more theoretical, we can say that life is defined biologically as the thermodynamic balance between intropic forces, which are moving towards disorder, and energy dependent ATP consuming homeostatic forces. So if we think about this yellow blob over here as some sort of an organism, could be a human, could be a dog, could be a tree, could be an amoeba, let's call it an amoeba, we would say that this organism is alive as long as these homeostatic forces and intropic forces are in balance. But death occurs at the moment when the homeostatic forces are irreversibly overcome by the intropic forces. That's the moment at which we say the death has occurred. What do we mean by neurological death? Well, that is what we commonly call brain death. And if you remember one thing from this, I'd like you to remember that what brain death means conceptually is permanent, apnic unconsciousness. The condition is permanent because there's evidence of severe and irreversible injury by history and or imaging. And we've ruled out potentially reversible causes like hypothermia and sedative drugs. The patients are apnic. The brain does not trigger respiratory efforts even when exposed to high levels of carbon dioxide. And the patient is unconscious. And here's where the criteria are probably their weakest. We check whether the patient is unreceptive, unresponsive. You know, Joey, can you hear me? You apply pressure to the nail bed, et cetera. That's pretty crude. But we also do a very careful examination of brain stem reflexes. Have you ever wondered why we do that? Why do we so precise about that? We know we get around the bedside, the neurologists get their magnifying glasses, and we look to see if that pupil moves even the slightest twitch. Why does that matter? You can live just fine your entire life if your pupils don't constrict. I mean, that has nothing to do with whether you're alive or dead. But there is a reason why we do that. And it has to do with the structure in the brain called the reticular activating system, which is a neural network located in the brain stem and medulla that is responsible for wakefulness, and hence, consciousness. Now, we have no way of directly testing the function of the RAS. But it is surrounded by all of these other brain stem nuclei. And so the idea of looking at all of those brain stem reflexes gag, corneal pupils, et cetera, isn't because we care about those functions per se. It's because they are in proximity to the RAS. And if they're not working, we infer that the RAS isn't working. And this gives us greater confidence that the patient is actually unconscious. So that's brain death. So here's the question. Are cardiorespiratory death and neurological death just two different ways of determining biological death? Or are we talking here about two different ways of being dead? One cardiorespiratory corresponding with our intuitive biological understanding and a new neurological way. Are we dealing with one definition of death or two? Now, it's pretty clear that Henry Beacher in 1968 thought that this was a new way of thinking about death. He wrote many today would take the view that when consciousness is permanently lost, when it has passed the point of no return in the hopelessly damaged brain, this is the moment of death, something entirely new. But when we get up to 1981, and the President's Commission and the American law on death took 180 degree turn, the President's Commission wrote, as a practical matter, alternative standards may be necessary and appropriate. But the use of two standards in a statute should not be permitted to obscure the fact that death is a unitary phenomenon. They were insisting that there's only one way to be dead. The idea that these are just two different ways of determining biological death. And so let's look at this question here. Is brain death biological death? The best defense of this idea was written in 1981, the same year that the American law was written by Jim Bernat, neurologist at Dartmouth, good friend of mine now, who shares his interest. And he wrote this paper on the definition and criterion of death, defending this idea that brain death is biological death. And here was his argument. He says, we define death as the permanent cessation of functioning of the organism as a whole. That's a very biological concept, very biological understanding. And he says brain death is biological death because the brain is necessary for the functioning of the organism as a whole. The basic idea he had here is that the brain functions, if you will, sort of command central for the body. And that without the brain, the body literally disintegrates. It falls apart. Take away the brain, the body cannot keep going. And as evidence, he said, we know that destruction of the brain produces apnea and generalized vasodilitation. And in all cases, despite the most aggressive support, the adult heart stops within one week and that of the child within two weeks. So this was the idea that he was putting out in 1981. And since then, the mainstream view has been that both cardio respiratory death and neurological death are two equivalent ways of determining biological death. And so we'll see that in the neurological literature. So Elcovedics, who is probably the world's leading expert on brain death, wrote an article a while back, why brain death is considered death and why there should be no confusion. And he said, once brainstem function is lost, blood pressure is unstable, relentless lead declining. Cardiac arythmias appear. Support measures are complex, often fail. And the ability to maintain a brain dead body is virtually impossible. Brain goes, body goes. Last year was the 50th anniversary of the Harvard report. I wrote the article in JAMA that commemorated the paper and Vedic's wrote the article in the New England Journal. And here again, he emphasizes the same idea globally physicians now invariably equate brain death with death and do not distinguish it biologically from cardiac arrest. Brain death cardiac arrest same thing. And just a few months ago, the American Academy of Neurology published a position statement on brain death again emphasizing this point. They said the President's Commission and the UDDA consider death to be a unitary phenomenon, regardless of causation, resulting from either irreversible cessation of brain or circulatory function, affirming that brain death is based on biological facts of universal applicability. So you see this very unified presentation of the AAN and the AAP on this point. OK, so what's the problem with this position? The problem is that it's demonstrably false. It's clearly wrong. And what we need to do, I think, is come to grips with what that's going to mean. Brain death is not biological death. Let me tell you why. Most of this comes from the work of Alan Schumann, a neurologist at UCLA. He's meticulously documented dozens of cases of prolonged biological survival after brain death. The most dramatic was a boy who developed H. Flumann and Gytus at the age of four years. He was supported on a ventilator for more than 20 years after the diagnosis of brain death. And when he finally did have a cardiac arrest and had biological death at autopsy, he had a calcified brain. There was no neural tissue that could be identified like, grossly or microscopically. So it's an end of one, but it kind of really dramatically makes the point. The body does not need the brain in order to continue to live. Brain dead patients do everything that you and I do. Everything that you and I do except for two things. They can absorb nutrition. They can excrete waste. They heal wounds. They have intact immunological function. They can get pregnant. They can gestate babies. They can deliver babies. They can do everything you and I can do except. They're never going to wake up. They're never going to breathe on their own. Now this was kind of big news. Schumann's work, maybe not New York Times from page news, but for those who are interested in this, it was big news. And so in 2008 in the Bush administration, the president's counsel on bioethics decided to take this up and to look at it carefully because it was kind of shocking. And indeed, they agreed with Schumann. They said if being alive as a biological organism requires being a hole that is more than the mere sum of its parts, it would be difficult to deny that the body of a patient with total brain failure can still be alive, at least in some cases. They went on to say the reason that these somatically integrative activities continue, Schumann rightly notes, is that the brain is not the integrator of the body's many and varied functions. No single structure in the body plays the role of an indispensable integrator. The brain is not command central. Integration rather is an emergent property of the whole organism. And indeed, this has demonstrated every year, several times, I tend to follow this stuff closely, so I can tell you that there's three or four cases that come to the news that alike this every year, where an otherwise healthy woman tragically becomes brain dead while pregnant, automobile accident, ruptured aneurysm, something like that. And so these are the headlines that are typically accompanying it. Brain dead Canadian woman dies after giving birth to boy. Some of you might see what's wrong with this headline, is that it's not actually accurate. If the AAN position is correct, what this headline should say is, woman who's been dead for six weeks, gives birth to healthy little boy. But you'll never see the headlines written like that. Why? Because I think it strikes most of us as completely implausible that dead people can have babies. This has all sort of been of interest under the radar until the case of Jahaimeknaf, which with social media and everything else, really brought all of this to national attention. So let me tell you a little bit about her. She was a 13 year old who was admitted to Oakland Children's Hospital in 2013 for complex pharyngeal surgery. She had a postoperative hemorrhage, a cardiac arrest, and was diagnosed as brain dead three days later. Her family rejected the diagnosis and sought legal intervention. She remained biologically alive for almost five years, mostly at home, with occasional hospitalizations. She had a ventilator to breathe for, was fed through a tube in her stomach and received supplemental hormones. During that time, her body continued to grow and develop. She went through puberty, began having mencees. After almost five years, she developed liver failure. At that point, her family declined further interventions and she had a cardiac arrest in 2018. It was a little more than a year ago. Today she has two death certificates. California says that she died in 2013 in New Jersey where she had the cardiac arrest. Her death certificate says she died in 2018. These are both valid at this point. Now you might say, well, okay, weird cases make bad examples. Why aren't there more cases like Johimic man? And I think there's good reasons for that. The diagnosis of brain death is almost always a self-fulfilling prophecy, quickly followed by either organ donation or ventilator withdrawal. Very few families insist upon continuing life support in the face of such a poor prognosis. You tell a family, your child is never gonna wake up again, is never gonna breathe without a ventilator. That's majority of families say, well, there's no point obviously in going forward, regardless of whether she's dead or not. But even those who do insist on continued treatment are typically overridden since brain death is recognized as legal death in every state. What the point I wanna make is that in those rare cases where life support is continued prolonged biological survival is possible, not even unusual. So to summarize up to here is brain death biological death. I think the answer is very clearly no. So why does the AAN continue to insist that it is? Now I don't know the answer to this, but I think that it has to do with what we call the dead donor rule. So the dead donor rule is not actually a law or a regulation written down anywhere. But it's this kind of fundamental ethical assumption that underlies the ethics of organ procurement and transplantation. And there's different ways you can say it. You can say vital organs for transplantation may only be procured from patients who are dead or physicians may not cause death when procuring vital organs for transplantation. But you can see the problem here, that if brain death is not biological death and if the dead donor rule requires patients to be biologically dead before their organs are removed, then we violate the dead donor rule every time we get organs from a brain dead donor. And that would be a problem. So if organ donors are not biologically dead and if the DDR requires donors to be dead, then what are our options? So first, we could stop procuring organs from brain dead donors. Now, that would not be a very attractive solution and at so many levels, organ transplantation saves the lives of thousands of people a year. And this would be tragic to see that stop. Although I'll tell you that Ed Pellegrino who was the chair of that 2008 Presidents Council, very famous bioethicist, he wrote an essay after they did that report. He's a Catholic bioethicist and held, pretty strong religious views about this. And he said, you know, if we can't come up with a better understanding of why brain death is death, we're gonna have to stop doing transplants. So he took that very seriously. And I'd like to say I don't think that that's where we need to go. I think that there are some other options. Two, we could question the dead donor rule itself. And this has been a view that I have had for many years. The idea being that the most important question is not whether the donor is biologically dead with my colleague, philosopher Frank Miller. I wrote a book about this. And the idea was that even though the donors are not biologically dead, organ procurement may nevertheless be ethical because of two other ethical principles. First of all, the donor is not being harmed in the sense of depriving that person of the future self. They're never gonna wake up again. And secondly, the donor has given permission. I think that this is a very conceptually sound way of solving the problem. But over the years of writing about this, talking about this, I've come to appreciate that, at least in the medical profession, maybe in the public as well, there's a great affiliation to the dead donor rule and to wanting to follow the dead donor rule. And so I'm inclined now to look at another way of viewing the issue, which is to recognize that death can be defined in more than just biological terms. What do I mean by this? You know, death has many meanings, biological, social, cultural, religious, legal. It tells us when to begin to mourn the loss of a person, when to begin religious rituals like wakes and funerals, when to execute wills, pay out, insurance policies. It tells us when we can stop efforts to sustain biological life in the ICU when we don't need to continue. And of course, when organs can be procured for donation. So floating the idea here that death is not only a biological concept, but also a social construct. And that we can recognize that brain death is not and never has been the same as biological death, but appreciate that we're not in fact obligated to define death solely in biological terms. And we can recognize that brain death can be understood as a social construct that represents a new and uniquely human way of defining death. Now when I mention social construct, I can often see people's eyebrows go up a little bit, it sounds a little bit fishy. So let me explain to you what I mean by that. So social constructs are concepts that we choose rather than discover. And for those of us in medicine, this is not really a familiar idea because the concepts that we use in medicine are things that we discover out in the world. We don't choose the principles of physiology or pharmacology, we discover them and then apply them. Social constructs are different because they're chosen. And let me give you a famous example. Thomas Jefferson's first line from the Declaration of Independence. We hold these truths to be self-evident that all I'm in a creative equal, that they are endowed by their creative with certain unalienable rights that among these are life, liberty, and the pursuit of happiness. Most of you could probably recite those words with your eyes closed. Point I wanna make is that these truths that Jefferson is talking about were not some facts that he discovered out in nature. There's not, you know, you don't go out and do a scientific experiment and discover that all men are created equal. He's proposing these to be social constructs that we all should adopt, that we all should accept. Now he says they're self-evident there, but of course they're not self-evident. There's nothing self-evident about all men being equal, but it's a way of him trying to be persuasive, to get you to come along with him and to recognize that we should accept these, that these should be the foundation of this new country, you know, our constitution. And it also shows, I think, that these kinds of social constructs are not immutable. They can be changed when Jefferson said that all men are created equal. Of course he quite literally meant all men. Back not just all men, he meant all white men. And yet over time we've come to recognize how these social constructs can be changed and improved. So what I'm suggesting here is that we think about death not as a biological fact solely, but also as a social construct. And if death is a social construct, what definition should we choose? Bob Veach, philosopher at Georgetown University, has written that death should be defined as a social construct as the irreversible loss of that which is essentially significant to the nature of man. The capacity for rationality, experience and social interaction. And of course, consciousness is the substrate for all of these. So can we define death as the permanent loss of consciousness? Now I think that this idea resonates with many of us. To go back to Nancy Cruzon, young woman who was in a permanent vegetative state, here's what her parents chose for her tombstone. Born in 1957, departed in 1983. That's the date of her automobile accident when she became permanently unconscious. And at peace in 1990. So this idea that your dead or at least as good as dead when you completely lose consciousness, I think is something that resonates with us. But it can't function as a definition of death in itself. And Nancy Cruzon actually exemplifies why. Because although patients like her in a permanent vegetative state are considered to be irreversibly unconscious, they have spontaneous respiration. And people generally have very deep convictions that spontaneous respiration is sufficient to consider a person to be alive. You know, if you and I were to stand at the bedside of someone in a permanent vegetative state and you were completely convinced that they were never going to wake up again, we may come to some agreement about, well, yes, this could be death. But as long as that person is breathing spontaneously, I think most of us would be reluctant. And maybe we couldn't even say why? Maybe this goes back into our genes, tens of thousands of years. But I think spontaneous respiration is just one of those things that would convince us that this person is not yet really dead. And so the challenge would be, can we create a definition of death that combines these two strong intuitions about neurological functioning? Both that death is the permanent loss of consciousness and that death is the permanent loss of the capacity to breathe. And as I was thinking about this and doing research about this, I came across the fact that somebody's already done this. And so it's actually the United Kingdom. And unlike the United States, they don't have a law about death that they have left it up to the American, the American, the Academy of Medical Royal Colleges to define death. And here is how death is defined in the United Kingdom. Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person. And thus, the definition of death should be regarded as one, the irreversible loss of the capacity for consciousness combined with two, the irreversible loss of the capacity to breathe. So notice that in the UK, they make no pretense that death is a purely biological phenomenon. They clearly state it's a social construct. It's something that we have created to apply to human beings and these are the two features that it needs to be. And I think the British here have absolutely hit the nail on the head. They maybe are screwed up with Brexit, but they've really got it right. I think when it comes to how you think about defining death. And so this idea that these two ways should refer to biological death, I think we should change that and say they refer to the loss of the essential characteristics of a human person as the British do. So moving on now, I said that if we accept that donors are not biologically dead and the DVR, the donor will require donors to be dead. What are our options? And I've given you three. Actually there's a fourth. And I think the fourth option is the one that is likely to win out. And that is to simply ignore the problem and continue to insist that brain death is biological death. I don't see the American Academy of Neurology or the American Academy of Pediatrics as changing course any time soon. But I think that there's a price, there's a price to be paid for this. The continued insistence of the AA and the AAAP that brain death is biological death. I think is damaging the credibility of our profession. And let me give you one example of that. So let's go back to the Jahaimic math case, Oakland Children's Hospital. Now of course I wasn't there, but it's not hard to imagine that Jahaimic math was in a bed space in their ICU. And that perhaps in the bed space next to her, there was another little girl who also had her eyes closed wasn't responsive, needed a ventilator to breathe. And I think math's parents might have noticed that and then noticed that actually she got that. Left the ICU. And it wouldn't have been unreasonable for them to ask, gee, our daughter looked exactly like that little girl in the next bed space, just exactly. And yet that little girl is now better and they're telling us that our daughter is dead. Now why can you explain that to us? I think we would all agree that that's not an unreasonable question. And they did in fact ask that question. And the chief medical officer of the hospital told them, what is it that you don't understand? She's dead, dead, dead. And according to some accounts was pounding the table each time he said the word dead. You know, it was a rather demeaning way to respond to them, wasn't it? I mean, it sort of implies you're just not smart enough. You just don't get it. All the rest of us know that she's dead, this is dead. And if you don't get it, you just must not be smart enough. And I think in fact they were a lot smarter than they were given credit for. And bioethicists did not help with this situation. My colleagues, I won't give you their names, but bioethicists that you read about in the New York Times and elsewhere, when they were interviewed about it, they said, well, you know, it doesn't matter if your family rejects the diagnosis of brain death. Her body's gonna start to break down and decay. It's a matter of when, not whether. She's gonna start to decompose. And when I asked this person, I said, we don't, why did you say that? He said, well, that's what the doctors told me, the doctors told me that she's, that brain death is the same as biological death. And that's what happens when you're biologically dead. You decompose. Of course, that's not what happened. This is simply factually incorrect. My favorite quote that he also made was when the mass family asked the doctors to feed her. He said, well, you know, you can't really feed a corpse. And of course, he's right. You can't really feed a corpse. But the fact that she was then fed successfully for the next five years, you know, I think sort of makes the point. So I think that we are really shooting ourselves in a foot by this continued insistence that brain death means something that it doesn't. So where should we go from here? I'm suggesting that instead of looking at our testing for determining when somebody is dead as reflecting biological death, we recognize it refers to the loss of essential characteristics of a human person. And I think really the way out of this, this is a longer conversation, but I really think we're going to need to revise the uniform determination of death. We're going to need to revise the law, excuse me, that we have about death. And instead of defining death as the irreversible loss of all functions of the entire brain, including the brain stem, we should define death as the irreversible loss of the capacity for consciousness, combined with the irreversible loss of the capacity to breathe, as they have done in the United Kingdom. Okay, so let me just say, I think that revising the UDDA would be both radical and conservative. And let me say what I mean by that. It would be radical. It would be a big change, because it would reject the view that our definition of death is based on biological integration, and accept that the current definition of brain death as human death is, and always has been a social construct, not a biological fact. It would also provide a unifical definition of death that is grounded in neurological functioning, recognizing that death is, for human beings, primarily a neurological phenomenon, not a biological phenomenon. It would also be conservative though, because there would be no short-term impact. It wouldn't disrupt current medical practice. Our current criteria for determining death, both cardio-respectory and brain death, would nominally fulfill this standard. So we would continue to diagnose death in the same way that we do. It's just that what we'd be showing would not be that the person is biologically dead, but rather they are dead in this way that I have just described, this social construct. I say nominally though, for a reason, and that is that there have been increasingly concerns about whether the current criteria we use actually do represent irreversible unconsciousness. There are some who believe that MacNath was actually in a minimally conscious state. This is controversial, but the point is, if these kinds of issues continue to arise, it's going to be, well, then we need to revise the tests that we do in order to make sure that they are, in fact, irreversibly unconscious. And this approach would also preserve our current approach to organ procurement, and we would be in compliance with the dead donor rule. In other words, we would not be taking these organs before these patients were determined to be dead. Now, what about those who do not accept this social construct? So if you've been reading the papers, you know that there's a number of religious groups, most notably certain sex of Orthodox Judaism that reject the concept of brain death. And it's gone even well beyond that. We now have hospitals that are chops in the newspaper and Texas with cases where families have rejected the diagnosis of brain death. We've had them here, and I'm sure we're just seeing the tip of the iceberg in terms of the newspapers. I think this is increasingly a phenomenon. And what do you say to these people? And in particular, should they be permitted to opt out of the diagnosis? Now, you know, if brain death is a biological concept, then the idea of opting out doesn't make any sense at all. You know, you can't opt out of biological death. That initial picture from Rembrandt, you know, if that man's family said, oh, no, we're opting out of biological death. We don't really think that that guy on this lab is really dead. I mean, it's nonsense. Opting out of a biological concept is like saying you opt out of gravity. It doesn't make any sense. But if death is a social construct, now it kind of comes back, you know, well, should we allow people to opt out of something that is a social construct? And of course, the big fear here, the big fear is that if we start to allow this, what's going to happen? The trust of the public in organ donation and transplantation could erode. Rates of donation could go down. The impact on our ICUs could be dramatic. ICUs could be filled up with children whose parents are rejecting the diagnosis of brain death. I think these are very real concerns that need to be addressed. I don't know the answer to them. But I do think there are some interesting lessons that we can draw from of all places, New Jersey. It turns out that New Jersey has allowed a religious exemption to brain death for over 25 years since 1991. In New Jersey, you could say you don't accept the diagnosis of death by neurological criteria and you cannot be declared dead on that basis. So what's happened? There's no evidence to my knowledge that this has, as anyway, happened organ donation, procurement, or transplantation in any way. And no evidence that the treatment of brain dead patients has significantly impacted ICU utilization. And indeed, even Johimic math was in the ICU very infrequently. Most of her care was at home. So obviously, the example from one state isn't definitive. But I think it should provide some reassurance that by acknowledging that brain death is not biological death, we maybe are not necessarily opening a Pandora's box of problems. All right, my conclusions. Well, without getting too political here, I think we do have a crisis of truth in our society right now. You know, instead of following the facts, our leaders follow their agendas in ideologies and then create the facts that support them. And pardon me, but I think if there's anything that we've really learned from Trump, it is that you can, if you speak untruths loud enough and frequently enough and persistently enough, you can actually get people to believe them. And I think this is an issue in our society right now. The AAN and the AAP have continued to insist that brain death is biological death right down to a couple of months ago. This is the guideline statement from the American Academy of Neurology. Brain death is biological death. It's no different from cardiac arrest. I think that's wrong. And I think we need to be careful. And let me just say about, I have to say, because inside imputing a lot of people here, I think that they're continuing to insist on this for well-intentioned concerns, that this belief is necessary if we're going to support or condemnation in the wise use of ICU resources. I would just point to New Jersey as perhaps evidence that that's not the case. And then in closing, I would just say I think we do need to be careful here. The public needs to trust that the medical professionals are committed to telling the truth. More so than really almost anybody in society. If you can't believe that the people that are taking care of you in the hospitals and in medical practices are being straight with you and telling the truth, I think that's a terrible problem. And the trust of the public is both precious and fragile and once lost can be difficult to regain. So I'll leave you with that. And we have time for some questions and I hope some interesting discussions. So thank you very much. Thank you. Thank you. Thank you. Thank you. Yeah. Well, these organelles eventually end up with neurologic patterns. And what you propose is sort of like the opposite of what these guys are faces. When does life begin and when does consciousness begin? So I don't know. It's just an interesting dichotomy. What do you think about that? Yeah. Well, a question right. And by the way, we're having some conferences about this in our Center for Bioethics. Please stay tuned because you can learn more about brain organoids. And they're basically cells that have been derived from stem cells that have differentiated into neurons. And they form these like pea-sized organoids, which begin to self-organize. And most recently from UCSD, we have evidence that you can actually pick up the equivalent of EEG activity, which shows the kind of synchrony that you see in very primitive brains. The point I would make about that in response to this talk, Charlie, is I think it shows just how much we identify being alive with consciousness. That everybody's concern about these is when are they going to have some experience of consciousness? Because when that happens, that's when we need to take them very seriously in a moral sense. That's when they begin to have an ethical status. And it's basically the exact same argument that I've been trying to make here is that for human beings, I think over the past 50 years since the concept of brain death was developed, we as a society have begun to see ourselves more the value of our lives as being tied up with our consciousness and with our brains. And I think it's reflected in the concerns over these organoids. Thank you for that very thoughtful and comprehensive session on what is death, what a topic. You've given, you've been invited to give this talk literally across the world, I happen to know, over the last year. And my first question to you is, what is the most common question or comment that you get from audiences like this? You've been throughout Asia, throughout Europe, throughout North America. What is the most common thing you hear from medical colleagues when they hear this talk and then they have a question to ask you? Thank you, Jeff. You didn't tell me you were going to give me that question. So, you know, I think what's going on is a certain cognitive dissonance in that I think that there's an acceptance about the points that I'm making, but a reluctance to accept the consequences. So, for example, I gave this talk in Brisbane, Australia, and the director of their medical school education program got up and he was so funny. He basically said exactly that. He said, you know, Dr. Trude, I think you're right. I can't see any flaws in the argument you just gave, but I'm teaching our medical students about how to behave professionally. And I'm going to continue to tell them that when they make that diagnosis of brain death, those patients are biologically dead. And I recognize in saying this that, you know, it doesn't make any sense, but I think we can we need to continue to teach that. And that I thought was remarkably candid, but also in a certain way, inexplicable to me. Why are we afraid of talking about things in the way that they are? Why do we feel we need to make things up to justify something that we wish was true? Second question, and it may be more an observation, I'm going to ask you to respond to. So, you strongly support organ donation. Absolutely. Everyone in our critical care program strongly supports organ donation. You noted that we are we are meeting families who vehemently reject and attempt to sometimes legally reject our diagnosis of brain death. It's my observation that these families arrive with typically a strong, longstanding, religious foundation that doesn't allow them to support our diagnosis. And that simultaneously we don't say to them, I'm trying to convince you that this patient's your loved one is biologically dead. I think what we say back to them, because I don't think biologic ever comes into it, I think what we say back to them is in our state, your child meets all the criteria for death. And they typically say back to us, but the heart is still beating, which of course is just a surrogate for everything that you're saying. But the whole concept of is this biologic death isn't coming really from the family. And simultaneously would you agree we at least here don't try to convince the families, I think we go right past it. We really discussed this is equal to biologic death we say we strongly believe that your child's never going to be any different than they are now. And moreover in the Commonwealth of Massachusetts they meet the criteria for death and that that's the discussion that we're having with families. So that I think is the beauty of the approach they've taken in the United Kingdom. They also go right by the issue of whether this is biological death or not. They don't even discuss that. They recognize that death is these two things, you're never going to wake up, you're never going to breathe again. Now that applies to somebody who's had a cardiac arrest and is dead in that usual way, it applies to them. But it also applies to these patients that we've determined to be neurologically dead. And here's the point, it is death in our society, it is death in the United States. And so my response, I think when we see parents who reject this diagnosis tell me if you disagree but they tend to fall in these two different camps. There are those who are doing this for secular reasons that they don't have a religious basis for it. They just do not, as you say, as long as that heart's beating, I'm going to consider my child to be alive. And I think we need to say to them that that's actually not the law in our state or in the other state. And so we need now to come to an agreement with you about what's going to happen next, which is going to be either organ donation or ventilator withdrawal. Then there are those with the religious exemption, objection. And I think the answer is the same to them. We don't have to honor all religious preferences in our country. We give them great standing, but you can't marry as many wives as you want to, even though there's religions that believe that's the right thing to do. It's against the law. And I think that that's the same position we should have towards really these relatively small number of religious sex who also hold an objection to brain death. And we say we respect the, we respect your views, but we don't have to follow them. And I think that's the way we should approach it. So I'm very much in support of the way that you've led us in terms of how we're going to respond to these families. We're going to be compassionate, but we're going to set limits. And there's a time where that ventilator is going to be turned off. And I think that that's exactly right. It's consistent with I think how we've looked at death over the last 50 years and it's consistent with the laws that we have in this state. What Bob is referring to is a new procedure following the diagnosis brain death in this hospital, where we will give the family a period of time if they will, if they seek to challenge us, we will give them a period of time. To challenge us legally. We, we tell them that you've got this much time. We're going to give you this much time. And then we are going to challenge you legally. And fortunately, while we have entered that pathway and have come very close to having to challenge people legally in court, we haven't gotten that far. We've been able to resolve it. Any other questions for Dr. Trude? Thank you, Bob. That was really thought provoking as always. It seems to me that one of the, one of the things that's a gap in what we have to offer families in this very murky area is a diagnostic test for establishing that someone is permanently unconscious. And, you know, I'm struck by the fact that with a lot of the technology and incredible advances that we have nowadays that we still use a very well intention with no disrespect to my neurology colleagues, someone with a syringe full of ice water at the patient's bedside to make this critically important diagnosis of clinical criteria. Do you see anything coming that is going to perhaps be transformational in the technology of how to diagnose whether someone's permanently unconscious? Thank you, Monica. I actually think it's going in the other direction up until, you know, maybe 10 years ago, neurologists were quite confident that with a bedside examination, they could determine when a patient was. In a persistent vegetative state and then based on the prognostic factors, be able to stay there in a permanent vegetative state. And over the last 10 years with functional MRI and other technologies, we're discovering that it is not uncommon for patients to appear that they are absolutely unconscious and yet be able to answer yes, no questions to things like, you know, do you live in Massachusetts or New York by regulating their brain waves? I mean, let me just say one more word about that. So the classic experiment would be that you have somebody for all the world looks like they are permanently unconscious. You say, you say to them, imagine you're playing tennis and you will see a certain pattern in their brain and then say, imagine you're walking around your house and you will see a different pattern, one related to motor function, one related to space, your temporal function. And you train them that way and then you say, you know, do you live in, if you live in Massachusetts, imagine you're playing tennis and you see that same pattern. It's frightening and these are patients that we never suspected had consciousness. Now, where I think it relates to brain death in a sense is with brain death, we are typically looking at a degree of brain injury, which is absolutely devastating, much more so than is necessary for the persistent vegetative state. And particularly around the brainstem, which has that particular activating system and once that's gone, consciousness is impossible. So I feel reassured that when we diagnose something with that massive degree of brain injury, that the chance of them being conscious is virtually no. But in terms of testing to actually know that, I think we're finding more uncertainty now than actually progress. Bob, that was, that was a very fascinating talk and it made me think that you're actually not asking what is death, you're asking what is life. Yes, that's right. Many of us take the view that Descartes perhaps was right, that you know, I think therefore I am. And it brings up the more interesting questions socially. Is it possible for people to construct their own definition of death and allow people to die with dignity and perhaps a formalized fashion when they've lost their cognitive functions? Right. Oh, you're wonderful question time. So Bob, Vigil and Laney Ross have just written a book about this and it is exactly the idea that we ought to be able to choose the criteria by which we want to be considered alive or dead. And that patient's in a persistent vegetative state by an advanced directive should be able to say when this happens, I want to be considered dead, you know. And conversely, they're also saying that those who object to the diagnosis of brain death ought to be respected as well that fundamentally these are a value choice. You know, I like it as a concept. I worry about how such a thing might be implemented in a society such as ours, which is so polarized around so many things. The way I prefer to look at it a little in some ways is even though we talk about brain death as a social construct and people say, wow, that can't be real. If you look at the last 50 years, our society has almost, you know, but the huge majority of people are in support of organ donation when patients are diagnosed as brain dead, they want to donate those organs. I think what we've seen is that without being asked, the vast majority of our society actually supports this idea called your dead when you will never wake up again and can't breathe on your own. They may not stay it explicitly, but you know how people vote with their feet or whatever. I mean, they're anxious to donate organs when their loved ones are in this condition. And I take that as a rather implicit agreement with this new way of understanding death. And I think I reassurance from that. Thank you for the great talk and I can't help but think of a debate that's been raging. If now was moved into the political and judicial world, when does life begin? Yes. These heartbeat bills that are being passed in states on the country and their relationship to your office. So with one minute, should I wait into the abortion debate? I won't accept to say that I think in some ways the issues are fundamentally the same. If you believe that life is a purely biological phenomenon, then life begins at the time of fertilization. If you believe that life is a social construct that depends upon the values that we ascribe to organisms at the beginning or at the end, then you can come up with lines that we draw. Just like we draw a line of brain death, you could draw a line at a certain point in conception where you think that whatever that that organism is now has acquired certain moral status. So I do see it as still this dichotomy. If it's just biology, then it's really about conception. If it's a social construct, now we have room to move as a society and come up with criteria that work the best for us. Well, it's 8 o'clock. Bob, thanks very much. Okay. Thank you.
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