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The World Brain Death Project was undertaken to establish minimum standards for diagnosing brain death/death by neurologic criteria (BD/DNC) in children and adults across a broad range of settings and clinical circumstances. In this Q&A, senior authors of the 2020 report join an editorialist and bioethicist to discuss the project. Featuring interviews with Gene Sung, MD, MPH, of the University of Southern California; Ariane Lewis, MD, of NYU Langone Medical Center; Robert Tasker, MD, of the University of Cambridge; and Robert D. Truog, MD, MA, of Harvard University. Click the Related Article link to read the full report.
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Howard Bauchner: Hello and welcome to "Conversations with Dr. Bauchner." This is Howard Bauchner editor in chief of JAMA. This is a first for us. I am here with four people. So, let me introduce them and then I'll let people know what we're going to talk about. The first is the senior author of a paper that we'll be discussing today. It's a remarkable publication. It's entitled "Determination of Brain Death and Death by Neurologic Criteria the World Brain Death Project." And the two authors from this manuscript who are joining us are Gene Sung, who's an assistant professor of clinical neurology, Director of Neurocritical Care at LA USC Medical Center Inpatient Chief. Welcome, Gene.
Gene Sung: Thank you.
Howard Bauchner: The other author of the paper who's joining us is Ariane Lewis, who's an associate professor of neurology at NYU Langone School of Medicine. And she works in critical care. Welcome, Ariane.
Ariane Lewis: Thank you.
Howard Bauchner: And then we have two old friends and colleagues. One is Bob Truog who is the director of the Harvard Center for Bioethics and the Frances Glessner Lee Professor of Legal Medicine, professor of anesthesia. Bob. And Robert Tasker. Robert and I are old colleagues and friends from my time at the BMJ. And he's director of the Pediatric NeuroCritical Care Program. But he has returned to London, where he's now a reader Cambridge University, welcome Robert. So, Gene, we'll begin the discussion after you describe what this project was. It's an extraordinary accomplishment. Once again, the title of the manuscript that's being published is a special communication. "Determination of Brain Death and Death by Neurologic Criteria the World Brain Death Project." So, Gene, what is this project?
Gene Sung: Well, I think that it's been understood for quite some time that there's a lot of variance in how to determine brain death throughout the world. And a number of people throughout the years have tried to minimize these differences. And there have been a number of projects to try to do that. I have thought of this on a hard basis around seven to eight years ago when I was going to be the coming president of the NeuroCritical Care Society. So, I had decided that this is going to be one of my main projects as president of this society, to try to standardize brain death, worldwide. But as it turned out, there was actually a separate WHO project that was starting at the same time. And so, I certainly deferred to WHO to take the lead on some project such as that. Unfortunately, it didn't quite go where we had hoped it would. And so I raised this up again about four years ago to think about how we can do this on a truly global level on helping to sort of again, minimize differences, or quite frankly standardize a little bit of how practitioners are determining brain death throughout the world.
Howard Bauchner: So, Bob and Robert, I sent you the manuscript. And to let people know, I'll go through some of the details. It's about 10,000 words, it has 17 supplements. And the way we've created it it has a number of figures, tables, and boxes. So, Bob and Robert, when I sent it to you what was your initial impression, when I sent you this long manuscript to comment on?
Robert Truog: Well, I was very impressed. And I want to congratulate you both and all of your coauthors for what you did. You know, for many years, working in an intensive care unit along with Robert, we were constantly having to update our guidelines for the determination of brain death. They seemed to be shifting, there were different opinions from different people. And you know for something as fundamental as a diagnosis of death, I think we all realized that that wasn't optimal. And so, the very meticulous and careful way that you guys went through all of the data. The fact that you've got all of these manuscripts now out there, each taking a separate topic and going through it in detail and giving us some consistent guidelines, I think is going to be a huge advance in the field. So, it was very impressive to see. I didn't realize you were doing it until I heard from JAMA and I just want to congratulate you on that.
Howard Bauchner: So, Robert, this has consumed much of your life, you know the notion of critical care medicine, neurologic well-being. I've known you for a long time. And much of your work has really focused on how to preserve health and well-being in an intensive care unit . what was your sense of the project, Robert?
Robert Tasker: So, I think the first thing, coming to it as a reader, it was just overwhelming, I though wow. How much has been done here. And actually, I thought, you know how am I going to wade through this. So, actually the trick that I took was why don't I just see what these people think, the research questions. And there are 70 research questions. And then go back to the main document, when they've identified the gaps, and the issues, and then read it. So, I found that, for me, to be the key to this. Rather than reading through the whole mass, which was overwhelming, to start with the research document and use that to go back to the document and then for me, it just sort of opened up. You know, this is what they've been thinking about. This is why this is written in this particular way. This is why this group has done this. I think there was one subgroup that had no questions, had no research questions. Which I thought you know that's nice, at least one group id that. But you know that was my initial reaction. You know, overwhelming, but how can I get into this. And you know, I would hope that readers do the same sort of thing. You know take the time to go through everything. But find a way in that suits them. You know.
Howard Bauchner: I want to thank the authors. When Gene and I with Phil Fontanarsa, the executive editor started to discuss the manuscript coming to JAMA, we certainly wanted the executive summary which is what we're publishing and printing online. And I really want to thank Gene, and Ariana and the other coauthors about allowing the supplements to be part of the manuscript and not to have taken them to different journals. I think having it as a simple document in one place will be a much more effective approach to communicating it. To give people a flavor of the document, I just will read the title of some of the tables, and figures, and boxes, as well as some of the supplements. So, table 1, Tests of Brain Blood Flow. Table 2. Test of Electrophysiological Function. Table 3. Perspectives of major Religions on BD, DNC, Brain Death/Death by Neurologic Criteria. And then, one of the more important boxes is a box that's simply is a list of glossaries of terms. It reminded me of some of the genetics papers that we published where I need a glossary of the terms. Because it's hard for me to keep up with them. And then the supplements are each in of themselves remarkable documents. The Concepts of Brain Death, The Science of Brain Death. Determination of Brain Death in Patients on ECMO, Documentation of Brain Death, Brain Death, and the Law. A flow diagram for Determination of Brain Death/ Death by Neurologic Criteria. Gene, in a few words, what do you think are the two or three highlights of the documents? Is it possible to crystalize it to two or three highlights? I'll give Ariana two or three other highlights. But what do you think are the two or three major take home messages?
Gene Sung: Oh, you want to summarize four years of work in a couple sentences. I think that this is really just a beginning of the whole project, honestly. Even though it's sort of our final paper, I think this is a building step for future work. And there will definitely be modifications in the future. But I think the takeaway is that there can be sort of glean from again, worldwide consensus a baseline for what we think is the minimum standards needed to determine brain death at this time. And it may change. And hopefully, again, as Robert has said, that there's a number of research questions that we think are important to ask and to hopefully be answered by other people to move forward from where we've begun. So, that's the main takeaway is that we've got some worldwide understanding and base that we can start from.
Howard Bauchner: Ariane, are there two or there, you know messages that you think can be derived from the document?
Ariane Lewis: So, first I think that it's great that this was such an international, multidisciplinary effort that just covers such a gamut of topics related to brain death. And I think that you know that really brings together a variety of different perspectives related to brain death determination as you enumerated earlier. Second, I think that this serves as a good template for countries that don't have brain death determination protocols to be able to you know understand what's going on in other parts of the world and what this group considers to be the minimum criteria for brain death determination, to assist them in putting together their own brain death protocol. We know that there are countries around the world that have a variety of different aspects of brain death determination that are different. And I think that it serves as you know the bare minimum with the understanding that there will need to be some variability from country to country, based upon local resources, and religious and cultural perspectives. But I think that this establishes a baseline as to the determination process.
Howard Bauchner: I was struck by the richness of the considerations within the document. So, you really recognize that this may vary based upon culture, and religion, and resources within each country. So, I think you've tried to develop different types of standards so that they can be adapted within certain health care systems or countries. Now, Bob, you know the history of brain deaths really starts, at least in the United States with a very famous document produced at Harvard. Could you talk a little bit about the history of how at least in the United States we've thought about brain death.
Robert Truog: Sure Howard, it's a fascinating history and it kind of begins in the era following World War II with the development of mechanical ventilation and the discovery of neurologists that there were patients who had brain injuries that would have been nonsurvivable, but for the fact that these patients were placed on a ventilator. And how do we begin to think about what that means in terms of life and death, and when we can consider a person to be dead. And it's a conversation that is still going on and I think that this document really continues that conversation. One of the big controversies that has been there is what does brain death mean in terms of why we would consider his person to be dead? One view that's out there that I think Henry Beecher, the chair of the Harvard Committee had was that people that are diagnosed as brain dead are dead because they're never going to wake up again. They're never going to breathe again. Another view which has really dominated the American perspective is that brain death is death because the body needs the brain in order to maintain integrated functioning. And when the brain stops functioning, the body stops functioning. And it literally, according to this view, the body literally disintegrates, and cardiac arrest quickly follows. And these have been two parallel perspectives that have gone along over the past 50 to 60 years now in terms of different ways of trying to understand the meaning of brain death.
Howard Bauchner: Now, Robert, you grew up in England, you did most of your training in England, then you came to the United States. And there's a somewhat different view of US versus UK. I mean you and Bob have written a viewpoint that we published a few weeks ago that will precede this document. What's the US/UK differences?
Robert Tasker: So, I should just point out I did do my fellowship at Johns Hopkins in critical care and then went back to the UK. My view is that Bob came up describing it pretty eloquently. That it's more of a sort of pragmatic definition of what death is. You know, unconsciousness at near and irreversibility of that with loss of brain stem function. So, you know if you take that as a definition then I think it then becomes easier to study because you're not dealing with all of these other issues that are raised in the research questions. You know does having hypothalamic function even though you've lost everything else, mean that you're brain dead? Bob has described that very well in the viewpoint. I did just want to raise one highlight for me. And we sort of forgotten a little bit about Candra Christian Murphy [assumed spelling], who is the third author of the editorial of that accompanies the article. And Cinda was one of my fellows many years ago. And now runs a pediatric ICU in Barbados. And I visited and been involved with him twice when he had a child who I taught him was brain dead. But brain death is not recognized in his country, and how does he deal with that? And I think what this document in JAMA hopefully will help with is essentially advocacy in these countries that had strong links with the UK, I don't know about other countries that don't recognize brain death. But they will be able to take this JAMA document and say, look we need to move this through our legal system. I know that Bob shared a quote from Candra about a recent case that he dealt with. And that's the reality when you go to a low- and middle-income healthcare system where brain death is not recognized, how do you deal with that? And I think this is a document that they can take and move forward.
Howard Bauchner: Ariane, now you deal with this issue. Both of you do, Gene and Ariane in your clinical work deciding if someone has died. When you hear Bob and Robert talk about the complexity about what death is, how do you think about it in your own clinical work and how do you think about it viz a viz this document, Ariane, you go first.
Ariane Lewis: So, I agree that certainly that there are complexities associated with the brain death determination process and that determination must be made in a thoughtful fashion, that there's a variety of different prerequisites that must be though about beforehand and that the examination needs to be conducted in a very thorough fashion. We really go into a lot of detail in the minimum criteria for brain death chapter of the document, associated with how to go about conducting the exam and then additionally, how to go about conducting the apnea test, and really getting into a lot of details again about when to use ancillary testing, and what types of ancillary tests should be used. And what kind of results would be consistent with brain death. I think that it's really necessary to delve into those details in order to have a foundational understanding about what we're saying and what we mean when we say brain death.
Howard Bauchner: Gene, the same question to you. You have your own clinical work and then you've heard Bob and Robert talk about some of the complexities about saying that someone's died. How do you relate to what issues they've raised viz a viz the document?
Gene Sung: Well, certainly the very first thing we do when we try to teach our trainees about brain death and how to do brain death examinations is that again, we're dealing with the most fundamental, or one of the most fundamental issues any physician is dealing with, which is life and death. This is truly, you know, we're the arbiters of who's really dead or alive. And so, we've got to be extremely careful, extremely sensitive about what we're doing. And to be as accurate as possible. And so again, this document is to try to help teach that to those countries that don't have this. Support them, support the physicians who don't have access to these kinds of training or education. And to use it, hopefully, as a basis that they can use to develop it in their own institutions and countries. And so, certainly, whatever publications and guides that we have in our hospitals in the US we try to be as thoughtful as possible, but again making that determination of death.
Howard Bauchner: Bob, what questions do you have for Gene or Ariane. I'm just curious. I mean you never get to interact with authors, you know. You're a peer reviewer, you're an editorialist. But here they are live. What would you ask them about their work, or this special communication?
Robert Truog: So, I think I'm looking more forward. And consistency across the criteria that you use is an important foundation. Where I think more work needs to be done is what is it exactly do you think that your criteria are meant to diagnose? And there is not clarity about this. In the United States the law is that brain death is the complete absence of all functions of the entire brain. And the American Academy of Neurology, and I know you would agree, is that the criteria that you are publishing do not show that. That some patients will continue to have some functions, like hypothalamic function, temperature control, fluid balance, that sort of thing. So, what is it that those criteria are trying to show? And in the work that I've done and hopefully in the viewpoint, I think that a very helpful perspective comes from the United Kingdom, because they are specific about what those criteria are intended to show. T hat they are guided to demonstrate that the patient has irreversible apneic unconsciousness. Is never going to wake up and is never going to breathe on their own again. And I would like to see some consensus around that idea. Because it's going to be impossible to improve the test in the future. If, you know, you're trying to develop a test that allows certain functions to remain, well that's not going to be compatible with United States law. On the other hand, we know that the test for demonstrating apnea, the inability of the patient to breathe, can be a dangerous test. Not always, but sometimes can be a dangerous test. And if we recognize that in future work, we would want to come up with safer, maybe you know, noninvasive ways of showing that the brain stem is actively destroyed, that would be a step forward. But we can't make any progress, unless we come to some better agreement about what these criteria are meant to show. And so, I'm taking a step back a little bit. I'm not taking anything away from the work that you've done. We have to have consistency as a starting point. But now we have to think a little bit more deeply about what these criteria mean and come to some better agreement about that.
Howard Bauchner: Gene, Ariane, how would you respond to Bob?
Gene Sung: Yeah, well I think it's very, as you know it's very, very complicated and an area of quite a lot of discussion. And as you've said, our first step was to get this baseline, this pragmatic baseline of what are people doing? What's acceptable? And what can people agree on? Practitioners agree on, the practice of brain death. And so, that's a clinical guide, or a consensus statement that I think healthcare professionals do all the time. And although we don't really know what is behind all of this. But this is our practice and how can we streamline our practice and unify that. And so, going to that validity issue, that I think is a multidimensional project including ethicists, philosophers, etcetera that may not be answered strictly by practitioners?
Howard Bauchner: Ariane, how would you respond to Bob's question query?
Ariane Lewis: So, I think that sort of one of the things that's at the core of your question relates to legal issues pertaining to a brain death determination. And you know, there is a lot of variability in that around the world. We have one manuscript that's devoted towards that. And we delve into a lot of the different aspects of legal variability around the world. I think you hone in on one of the issues pertaining specifically to the Uniform Determination of Death Act in the US and issues pertaining to changes between what the language is in that and what the language is in the American Academy of Neurology's guidelines on brain death determination. Obviously, the US is you know, the country we're in right now, but not the only country that's represented throughout the manuscript. So, I think that it's a little bit of a separate discussion pertaining to the issues of the UDDA. But I think that as you mentioned, the legal variability is definitely something that needs to be addressed as well, in addition to addressing the medical variability, which we do herein.
Gene Sung: And again, even in the US, within the 50 states there are a number of different state laws that differ. So, how we get that more uniform is a bigger task.
Howard Bauchner: Robert, what question would you ask Ariane and Gene.
Robert Tasker: So, I asked the same question of Bob and it was around the apneic test. So, the main document is quite precise about partial pressure of carbon dioxide, yet there are research questions which introduce the idea of uncertainty. So, you know I asked Bob, and I'll ask you. How can you be so certain if you also have this as a mina research question? You know, what is the exact level of PACO2 that we should be looking at in terms of including in the criterion for saying that the patient is apneic or not. Whether you want to include the pH in that is up to you. But again, in the research questions it focused on PACO2.
Ariane Lewis. So, I think that you point out a really important issue which is that some of these numbers have a certain arbitrariness to them. There's just no scientific manner in which we can say that at a PACO2 of 60, that if somebody has functional medullary chemoreceptors that they should breathe, but at 61 then that would happen for sure. At 59, that might happen. There's just, we just don't have a way to be able to demonstrate that. So, we settle on 60 as that was what's commonly used throughout the world, after looking at a wide variety of different protocols around the world. And also included a notation pertaining to a drop in pH as the acidosis could also be a driver for breathing. But as you noted, you know we addressed this in the questions pertaining to future research. Because there are a lot of things that we don't know. And I think it's really important to acknowledge the things that we don't know and questions that still remain while simultaneously setting certain standards.
Robert Tasker: So, I think this uncertainty then feeds back into the very thing that Bob raised, you know what is it that we're trying to identify here?
Howard Bauchner: Gene, there were quite a few international societies that are represented in the document. Could you just talk about what it was like to work with some of them or their representatives? It's not easy, there's quite a few societies and I think there's about 35 or 40 authors. And you tried to reach consensus on a lot of complicated and controversial issues. You seemed to be the person we dealt with most. What was that like? Did you think you needed therapy at the end of this document somehow?
Gene Sung: Well, as a globalist, it's working with other people. And working with any physicians, any groups of physicians, whether it's international or not is herding cats. So, it's nothing new. Certainly, some of the language issues were interesting. And some of the different concepts are different. But we felt again, we wanted to make this a global document and help globally. And so, we needed to have buy-in from a number of different groups. And certainly, starting with the five world federation societies. And then, progressing from there.
Howard Bauchner: Robert, if you had to articulate one or two questions, and I'm going to ask the four of you and then I'll let Gene have the final words. Robert, if I was to ask you, I'll give the four of you $1 million and you have to have a glass of wine and come out and tell me what the three questions you're going to answer with that $1 million. If they're really good questions, I'll give you $2 million. But if you have $1 million what are the one or two questions you really want to try to answer?
Robert Tasker: I don't think you can answer three questions. You might be able to answer one.
Howard Bauchner: Okay.
Robert Tasker: I think that as a pediatrician, dealing with families and you know it may just be the type of practice that I've had over the last 20 years that there are always memorable situations, or heartbreaking situations where families just don't understand the concept. And I think that on the one hand it's a fine thing that physicians agree on how to do this test. But how is it that we can communicate this idea to families that are experiencing, going through this process with their loved ones? Their children, or their husband, wife? I only see it from the perspective of the children. You know I actually I think this is where the [inaudible] and the UDDA failed. There wasn't enough consultation I think in terms of broad, family, citizen perspective on this. now, how do we do that? I don't know but I think it's going to eat into at least $2 million. If you want to hand that over, we'll work out how to do it. We'll even call it the JAMA Research project [laughter].
Howard Bauchner: I think I'm sorry I brought this issue up in this way. Bob, what questions would you try to answer. And I know that you know Robert's an important one, so if you could choose different ones.
Robert Truog: Yeah, sure I think if we're going to communicate better with patients and families, we need to be clear about what we mean by brain dead. We need to be able to say what brain-dead means. And Ariane described the legal differences around the world, but I think it's much more fundamental than that. Most of the world follows the United States standard that brain death is whole brain death. And there's no doubt that these criteria as consistent as they are do not; do not show whole brain death. Now, I don't think that invalidates them. I just think we need to be clear about what I means. Again, I think that the UK has put has standard out there that I think could be very helpful. But these are not just legal differences. These are profound, conceptual differences that need to be worked through so that we can say when we have done these tests, this is what we have shown. And at the moment, we can't do that.
Ariane Lewis: I think that you know as has been suggested brain death is not something that's just medical or scientific, it transcends both medicine and science. It's something that interlopes with ethics, with legal aspects, with philosophy. And I think that all of those different fields are really the fields in which we need to be making the most strides going forward on this. Because I think that you know we put together a consensus statement here on minimum criteria for brain death determination and addressed a variety of different scientific questions. But I don't think that spending money on solving any scientific questions will really move this field forward from my perspective. You know, I think that you know as both Robert and Bob suggest that there needs to be more education for practitioners who are involved in brain death determination. And that we need to work on making sure that we can get the public aligned in the concept of brain death determination. And get laws aligned in the concept of brain death determination. So, I think that this is more of a societal issue than a scientific issue in terms of something that one would want to dedicate money to.
Howard Bauchner: Gene, you get the final word, but it's a different question for you. The document is overwhelming. I mean when Phil and I first read it, and then you know Chris Muth is one of our deputy editors, he's a neurologist. And Jeff Saver is our associate editor and neurology. I know you know him. They helped us with the review. We sent it out to many people. But like with guidelines, they're very difficult for journals to review. You know we have to take some on faith . It's hard to review a 20,000-word document and make sure everything is accurately reflected between the references, the tables, the figures, and the document. If you're a clinician. I mean Robert mentioned he looked at the research questions and then went back. I looked at the tables and figures. I organize my thoughts around tables and figures. How do neurologist, critical care physicians, other clinicians involved in trying to determine brain death, how do they consume a manuscript like this?
Gene Sung: Well, I think it depends on what their objectives are. And so, certainly a lot of physicians are purely clinicians and so they want to make sure that what they are doing is in line with what most of the world thinks is a reasonable approach to determining brain death. And so, they'll look at the very specifics, the nuts, and bolts of doing a brain death examination. So, we lay that out there for those people who are interested in certainly just the pragmatic approach. But as has been mentioned, we are hoping that this will interest young researchers into this area of looking into what is brain death, how do it better, as well as how can we teach it better, who's qualified to do this, etcetera. And to look at all of those different, over 70 questions that we're proposing, or maybe even better they think of something else that they think is more interesting, or more deserving of their time and your $1 million.
Howard Bauchner: Ariane, I was struck by a word that you used to describe the special communication, foundational. I think it lays the groundwork for people to really begin to think about this issue from the perspective of many different countries and many different cultures. It is a foundational document, and really, it's a privilege that the two of you and your coauthors have given to JAMA to allow us to publish it. This is Howard Bauchner, editor in chief of JAMA. I want to thank Bob Truog who is the director of the Harvard Center for Bioethics, the Frances Glessner Lee Professor of Legal Medicine, professor of anesthesia at HMS. Robert Tasker, our two guests, senior associate critical care medicine director, Pediatric NeuroCritical Care Program. And of course, two of the many authors. Ariane Lewis who is an associate professor of neurology at NYU Langone School of Medicine. And Gene Sung who's an assistant professor of clinical neurology at Los Angeles County USC Medical Center. And I do want to acknowledge the first author is David Greet. The title of the paper is "Determination of Brain Death and Death by Neurologic Criteria the World Brain Death Project." Robert, Bob, Gene, and Ariane, thanks so much for joining me today. It's a remarkable, remarkable achievement.
Robert Truog: Thank you.
Ariane Lewis: Thanks for having us.
Robert Tasker: Thank you.
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