 Good afternoon, everyone, and welcome to another NeuroEthics seminar in our NeuroEthics seminar series. As always, I'd like to thank our cosponsors, the Harvard Brain Initiative in the International NeuroEthics Society, which supports our webcasting. If I could, I would apologize to the people watching via webcasts who are not currently connected, but hopefully will be very shortly. We also have a number of cosponsors that are shown here, and as always, we're very grateful for their support. Today we're going to be talking about a topic that gets discussed often in ethics circles and in neuroethical circles quite a bit, which is brain death. And for those of you who run in these circles, this may feel like a very familiar, maybe worn out topic for some of you, but we've got a very interesting take on brain death today because the topic is cross-cultural issues in brain death. And we've got two excellent speakers tonight to talk about this issue from hopefully a fresh angle for all of us. Dr. Ching Yang is a fellow in anesthesia at Massachusetts General Hospital now. And more importantly, for our purposes, she was recently a fellow at the University of Pennsylvania Center for Neuroscience and Society, at which time her work focused on cross-cultural issues in brain death. And she's going to be talking to us about brain death and about that work. To comment after her remarks, we have Dr. Bob Tru, who will be familiar to most or all of you, a world expert and well-renowned, perhaps infamous in when it comes to brain death. I was telling, he may be a little bit tired of the brain death topic himself. I had him talk to my master's class this week and he was just in Chicago giving a lecture in the McLean series on just this topic. But hopefully for him too this will be something slightly fresh and interesting that I know that will all benefit. So I'm going to welcome Dr. Ching Yang to be our first speaker. Well, for my professional, I was excited to have the opportunity to learn and talk about it. But it's especially better to come to this presentation at this setting because as we know brain death was only related at this institution. Also as Dr. Cochran said, we have many people who are in the circle. Here is a very sophisticated audience. So I hope we'll have a dynamic and stimulating discussion. So today I will talk about the differences in the acceptance of brain death between Western and Eastern societies and how cultural factors might contribute to that. As we know human death has a lot of implications. Biologically it shows the end of the individual organism. As clinicians we are asked to be able to tell when death happens so it can trigger a series of social and legal consequences. To us death is not obvious and the discerning, the process to discern death has not always been an easy task. We can see that a patient suffering from terminal illness is obviously still alive and a corpse that is rigid and pale with congealed blood and perhaps decomposing is obviously dead but when does that transition happen is not so obvious. So over the centuries people have arrived at a consensus of three signs of death. A fixed, unreactive pupil, the lack of heartbeat and the lack of spontaneous grieving. This is what we learned in medical school and this is what was written in my internal survival guide that told me what to do when I called to pronounce the patient dead in the middle of an action. But what about this patient? Perhaps he had a traumatic brain injury perhaps he had an intracranial bleed that resulted in severe neurological damage and he is in ICU on a ventilator. If we listen to him we can hear a breath sound in his chest and his heart is still beating but his pupils are not reactive, he doesn't respond when we call his name he doesn't move in any way when we give him a painful stimuli. So then again the traditional way of discerning death through the cardiopulmonary criteria is not apply to people anymore. And when that window closes we need to find another window to look into the internal state to see if he is dead or not. And that was born the concept of brine death, defined as the irreversible loss of whole brain function. Brine death has three main social utilities. The first one is the closure of family. When a family of a patient is told that their loved one is brine death and that equals human death they are more likely to be at peace and move forward. Brine death also reduces medical fertility and conserves medical resources and lastly brine death is a major source of organ donors or transplant in most of the countries that have adopted this criteria. For example in the US about 15 to 20,000 people are declared brine death each year. That accounts for about 10% of all deaths but 1% of all deaths but 10 to 20% of death in the ICU. About half of those people go on to become organ donors and are counting for 90% of all deceased organ donors and that supports over 20,000 organ transplant procedures potentially saving the lives of about 20,000 people. On the other hand if we look at brine death patients people have done longitudinal observational studies they found that over 90% of them even if you leave them on ventilatory and circulatory support they suffer cardiac arrest within a week. Meanwhile if we keep them in the ICU each day the cost is about $5,000. So if we are able to diagnose and declare brine death in a timely manner that saves a lot of money for the society. So it is not hard to understand how brine death was quickly adopted to routine medical practice in the western world after it was characterized in the 1950s and 1960s. But it is not quite the case in other parts of the world particularly Asia where I come from I was born in China and I grew up in Japan so in those countries the acceptance of brine death lacks behind. Japan had a debate for over 30 years before it finally legalized brine death in 1997. China the debate still goes on today so that prompted me to look at what could account for this apparent difference between those two parts of the world. So my first question was is there really a difference in the acceptance of brine death between the west and the east? And for the purpose of my project I used a working definition of the west as North America, Europe and Australia and New Zealand these countries where they share a common western philosophy whereas the east is mainly focused in east and southeast Asia. There are a few ways to look at this question One is to look at if they have a law recognizing brine death as human death. As we know brine death was defined in the 1968 report from Harvard and after that all of the western countries started drafting legislations. In the US the uniform declaration of that act was put in place in early 1980s and quickly recognized by all 15 states and by 1990s all of the 22 western nations that I was looking at had a law recognizing brine death. Whereas Asian countries really lag behind they only started having brine death laws in the 1990s about 30 years after Harvard report but still 8 out of the 14 countries in Asia do not have a law saying brine death was human death. Another way to look at the differences is to focus on whether each country has a national guideline on how the diagnosis brine death this could be published from a national medical organization or the department of public health. In the west all of the countries had a guideline in the east 8 out of the 14 countries did and when we look at those specific guidelines we can look at a few different factors although a brine death diagnosis usually requires two separate clinical exams separated by a certain amount of time not all of the countries in the west mandate such as separation of wait time to kind of give the patient a chance to recover if the brine death state or the state that they were in is reversible whereas all of the western countries mandate is waiting time the waiting time is also significantly longer in the eastern countries than the west and then another factor we can look at is how many physicians are required to declare brine death in the east the average is 2 which is greater than the 1.5 in the west and also more countries in the east require more than 2 physicians or they also require physicians who are specifically trained in neurological specialty or physicians who are not directly involved in the patient's care to avoid conflict of interest so we can see the guidelines in the Asian countries are more stringent than the western countries then yet another way to look at it is how much of brine death do we see in actual medical practice this is the number of brine death confirmed from each of the countries selected countries I was looking at in the most recent years the years range from about 2007 to 2012 so as we can see in the US we have many brine death this was 2011 it's 1800 18,000 brine death and in the so is most of the European countries but in the Asian countries we don't have as many brine death some people might say maybe it's just US has more people but that is obviously not true as we know the per capita brine death rate is also much lower in Asia especially if we look at very densely populated countries like Japan and China then how many of these brine death people could go on to become donors again we see many more numbers in the western countries than the east interestingly in China there is a very active organ transplant program but just that they don't have many brine death donors in a few studies looking at public opinions in different countries around the world they usually ask the question like do you think brine death is an appropriate standard for brine death and then people can answer yes or no and we can see that in the western countries far more people answered yes than the eastern countries interestingly if we look at China and Japan many more people answer with uncertainty toward this question they say I don't know what brine death is or I'm not sure so maybe the lack of education or knowledge contributes to their rejection of the brine death concept as well so through this overview we can kind of answer my first research question but compared to the west we see that eastern societies are slower at adopting brine death into legislation to the point that some of the countries are considering a true death option one example is China where in the debate people are proposing that maybe individuals can choose whether they're dead they want to be declared dead according to the cardiopulmonary or the brine death criteria the eastern societies are also slower at applying brine death in medical practice and then more relaxed the people in those societies appear to be more reluctant to accept the concept of brine death then the next question that brings us to is why so when we think of why we think back to the cultural and the religious roots of those societies and we wonder if this can help explain the differences that we observe and the majority of the literature comes from the medical anthropology field I want to share a few examples that I saw on the media online these are not videos, just clips so this is a local example from low Massachusetts in 2011 an 18 year old high school student had a snowboarding accident and it was declared brine death about a week later his family decided to donate his organs so this is his mom who was interviewed and she said we've decided that in brine death this means his life is over and we've decided to donate his organs to give others the gift of life this will help a lot of people I think her example illustrates two important points about how brine death is perceived in the West first, westerners tend to see brine death and he acquitted with death of the individual, death of the person and they think of donating organs from a brine death person as a gift of life for others and this we can track back to the philosophical roots of the western society where there is a clear separation between the mind and the body and the thought is that the soul really controls the body and humans are rational beings, characterized by this controlling relationship between the soul and the body and the brain is where the soul lives therefore when the brain is dead the soul is no longer able to exist and control and the body is just an empty shell then also as time moves on in the western society with the industrial revolution we have these ideologies of pragmatism and utilitarianism that shows that brine death is useful and also convenient particularly it conveys those social utilities that we discussed before in addition brine death concept fits very well with the traditional religions of the western society both Judaism and Christianity are the case that the process of dying should not be prolonged and there is a separation between the body and the soul also the brine death concept has been officially endorsed by authorities of the religions in the west which includes the Pope, the rabbis of both Israel and America and also the Islamic think council so they have all declared that brine death as human death sometime in the 1980s to early 1990s and they also live up to the medical profession to decide how to diagnose and declare the dying essence on the other hand we can look at a few examples from the eastern society so this is a Chinese family in Singapore it's a 40-some-year-old man who had intracranial hemorrhage and was presumed to be brine death now Singapore is a very interesting country in that they have a brine death policy that is an opt-out system so everybody who is a Singaporean citizen automatically they can be the clear brine death if clinically successful and can be made an organ donor unless they made a specific request before they are dead so here the family does not believe that their loved one is brine is dead and they requested a 24-hour waiting period to see if the person would come back and the hospital refused and brought the patient into the operating room for organ procurement so one of the family members says I don't know why they say brine death means he is dead they don't believe it, he is not dead his heart is still beating and his hands are still warm then another example, this is from Japan so this is a middle-aged man who had a stroke and is presumed to be brine death so in Japan they approved a law saying brine death is human death in 1937 but brine death, the definition of brine death was used only in the context of organ donation so only if the family agrees to donate organs then they proceed with the brine death exam and then they clear the person brine death otherwise they'll wait for the person's heart and lungs to fail and they clear the person's death using the cardiopulmonary criteria so here the wife receives information about the brine death exam from the doctors and she asks this question so the second brine death exam determines the time of death does that mean that Eli Ping himself makes an effort afterward the time of death will change so here we can see that she still does not think that her husband is dead that she thinks that the exam itself will artificially declare brine death the death on her husband and at the end she actually declines organ donation and brine death exam because she wanted to see him in a more natural way lastly we have an example from China so this is a very young woman who had a car accident and is now become brine death and her husband agreed to the brine death exam and the donation of organs however his reason for donation is very different from what the Massachusetts family had said earlier so he says for my wife to be able to continue living in this world through other means that is easier for us to accept to us she is still here just her body is gone but she has not left so we can see that he sees the act of organ donation as more of an extension of his wife's life rather than a gift for other people so through those examples we can see that in the east brine death does not necessarily equal death and death means the loss of hope so the family likes to maintain hope by rejecting brine death and also organ donation is thought of an extension of the dead person's life rather than a gift for others so we can see organ donation as the mutilation of the body and thus they reject it how do we explain this kind of philosophy and we have to go back think about the traditional religions and philosophical beliefs of the east such as shintoism and Taoism in the east the body and the human being lives in kind of a single unity with nature so this is really the world of princess monologue if you recognize this cartoon where not only there's not a clear separation between the soul and the body the soul is distributed everywhere but also the spirit does not necessarily live inside the body it can go beyond and connect with the forest and the ocean and the sun so it's hard to say where does my individual end and where does the spirit end when the body is dying so there's a lot of integration between the body, the spirit and the soul and there is a lot of hope toward life where people think life should not be controlled but life should be respected and old death is also a very ambiguous process as we saw from the Japanese example where they don't know clearly where, when the person has left this world so to have an artificial stop time that is in the brain death exam seems very unnatural to the agent mind in addition there are some beliefs about life in the eastern philosophy that kind of goes against brain death for example in Buddhism there are thoughts that there are three hallmarks of life vitality, heat and sentience so vitality is thought of as the energy that drives life as the energy is producing heat which is thought of as the outward expression of life so when a brain death patient lies on the possible bed he is still warm so the body heat as we saw in the Singaporean example becomes a sign of life rather than a sign of death also people think the consciousness and the soul exist far beyond the brain the brain is not really a dominant organ at all in western philosophy particularly in Chinese medicine Chinese medicine for thousands of years have ignored the brain there are many organs that the Chinese medicine has explored and many of these channels of the energy that they think life flows through but none of those channels goes to the brain so to say that brain is the organ that controls the rest of the body is inconsistent with those eastern beliefs in addition that brain death is often connected to organ transplant and organ donation the belief about reincarnation is often used to refute the needs of brain death and organ transplant people believe that if we take a part of a human out a part of the organ out the person will be reincarnated without that part for example if they donate cornea they will be born blind in their next life so those beliefs can deter people from becoming donors although Buddhism is not completely against organ donation as the legend goes Buddha once sacrificed himself to feed a group of hungry tigers so the idea of sacrifice is also in the beliefs of Buddhism and people are encouraged to go through suffering in order to have a better next life lastly another part of the western society social beliefs that may contribute to their resistance against brain death is the Confucianism beliefs about social structure so instead of an autonomous individual that is widespread in the western world the eastern world the person really exists within a network of relationships relationships with the family, with friends, with spirits with the monarchy and with the offsprings so sometimes the dying person is forced to live on for the sake of others rather than to be allowed to complete the dying process and lastly unlike the western religious authorities none of the eastern religious authorities have endorsed or voiced any kind of clear opinions about brain death so the lack of religious guidelines may also contribute to people's confusion about brain death so through the anthropology discussions we can see that the religious and cultural perspectives in the east and the west are consistent with how the societies are receiving brain death and organ donation and the lack of clear religious guidelines may also contribute to the confusion about the concept of brain death in the east but is this really just a war between those cultures how much of socrates and Confucius beliefs really contribute to people's decision making in the modern society when we have technologies and medical diagnostics that did not exist thousands of years ago so this brings us to my project which I've been working on for the past couple of years a more empirical look at how people make decisions about brain death in the east versus the west so this is a survey study of medical providers we had about 400 samples from a medical center in the US which is Yale Veratrain and a medical center, an academic center in China, in southern China and the survey had three parts so first we asked them about their background including demographics, educational background and cultural and personal beliefs then we assessed their knowledge about brain death to see if confusion and lack of education about the concept would play a role and then lastly we gave them clinical scenarios describing a brain death patient and asked them if they would take their death, officially dead, and if they would allow the withdrawal of supportive measures like ventilation and blood pressure support or tube fee and if they would lastly allow the procurement of organs from this patient so a little background about this sample as we can see many more medical providers in the US were religious than China which is expected as China has been under a communist rule for the past 60 years and it's a lot more secular also many more people in the US believe in the existence of soul than China and then we asked them where do they think the soul lived surprisingly brain was not the majority so in either cultures people did not really think the soul specifically resided in the brain and more people thought the soul was distributed throughout the body so that was the first surprise about our result and then we asked them what do they think of as a sign of death so as we can see majority of people believe in the cardiopulmonary criteria specifically the lack of heartbeat as a sign of death more people in the US thought aligned with a more brain centric definition of death such as no brain activity in EDG or lack of water functions such as reactions to pain compared to fewer people in China but interestingly in China overall people appear to be more confused about what really death is they were uncertain about death as we can see none of those had an overwhelming positive response so that may be suggest that there is consistent with this belief about ambiguity about the transition from life to death in the eastern cultures then we give them a 12 question brain death knowledge cast so 12 would be the full score and this was a bit surprise to me as well because I expected that the Chinese medical providers would perform much worse but actually they were comparable and even though statistically it was still significant but really there was not much of a difference in their scores so these were the specific questions we asked if they think a brain death person could breathe on their own could ever wake up could react to painful stimuli could move in any way could hear others or know that their family is there could swallow could excrete could shed tears and the last few questions about how brain death can persist for a long time in that brain death state whether a person with a beating heart can be declared brain death and the difference between brain death and persistent vegetative state so the main difference between the American and the Chinese answers kind of focused on the last few questions so concerning the pronosity of brain death the fact that a person with a beating heart can be declared brain death and the preservation of these autonomic spinal cord functions can be brain death so we see that the Chinese provider's knowledge about brain death was not too bad now how about do they think brain death is ethically acceptable or not and also here was surprising to us too but in both countries majority of providers thought brain death was ethical they think it could be an ethically acceptable way to determine human death then we asked if they believed that brain death was legal in the place where they lived so to clarify we know that brain death is legal in the US but it is not legal in China because there's no wall saying brain death, it's human death so half of people in the US thought correctly that brain death was legal but half was not sure in China half of people thought it was not sure and surprisingly about a quarter of people actually believed it was legal then when we asked give them the scenarios of the brain death patient and we asked do you think this patient is actually dead would you take clear death on this patient from what we learned before they think brain death is ethical some believe that brain death is legal and they have a good knowledge about brain death the clinical science of brain death so they should recognize this patient is brain dead and consequently they should be able to accept that brain death is dead so that was the case in America where majority of providers thought this patient is dead but only half of the providers in China saw so so if we think ethical acceptance of brain death should translate to acceptance of brain death as dead then we would expect at least about 69% of providers would say yes to the last question but what we got was less than that so that prompted us to explore further as to how they made that decision and what kind of characteristics was correlated with this practical acceptance of brain death so we did some regression analysis and here we see that in both countries ethical acceptance of brain death is significantly related to the practical acceptance of brain death also believing that brain death is legal mattered a lot for those providers and then high knowledge score if they know the clinical science of brain death helped them apply that to the clinical scenarios as well but what was very interesting for us to see is that religion and beliefs about religious beliefs did not really matter so whether the provider had a religious belief or not whether they thought the human had a soul or not whether they believed in world after death or reincarnation had no effect on how they dealt with the brain death patient in the clinical simulation the only thing about these beliefs that had a significant effect is whether they believed that the brain is where the soul lived but as we saw before that is the minority of people so we think there's something else that could be contributing to their decision making so we ask them directly when you think about making decisions about brain death or your patients what are the factors that matters the most to you they were asked to rank these different aspects in the order of 0 to 5 0 being the most important 0 being the not important at all and 5 being the most important and a few things stand out we see in both China and the US the quality of brain death mattered a lot to those providers so they wanted protection from law in order to make a declaration of brain death so that they do not get sued by the patient's family when they make such a determination they also thought about education and knowledge mattered a lot to them interestingly a couple things that stood out is that in the US more providers of religion mattered a lot to them than in China whereas in China things like medical liability and defensive medicine was more of a concern for the providers and in both countries they rank emotional aspects and emotional attachment between patient and family and provider and patient to play a role in their religion making as well so this is our preliminary model where we think in reality when people make decisions about a brain death patient it's a very complex process so the provider and patient background plays a role in this so the provider, their professional and personal experiences can have an effect on how they make the decisions particularly their knowledge about brain death whether they think it's ethically acceptable and also their emotional connections with the patient and the family a patient, the relationship with the provider and in China especially we see that their financial status and economics of the medical care as well as their advanced age or young age plays a role as well so overall the answer to my last question is that medical decision about brain death is a very complex process religious beliefs do not have a significant influence unlike what people have been proposing in the field where knowledge level, ethical acceptance and legal acceptance can contribute to the differences we see between Americans and Chinese providers and lastly the decisions that people make may actually be intuitive and heavily emotionally involved beyond just the big theories and the philosophies that we think are obvious but then we have some discussion questions that we can talk about later and lastly I just want to thank my advisors and the people who supported me in this endeavor thank you thank you and toss it's a real pleasure to be able to talk about one of my favorite subjects I promise toss I will keep this to about 10 minutes and I can confirm Winston Churchill's point about making a short talk is a lot harder than making a long talk so I do want to make a few points here about how I see the perception of brain death differing in the east versus the west but before I do that I'm going to have to torture you a little bit with some of the background to the concept of brain death so brain death in the west brain death is widely accepted in the west as representing the death of a human being however I think that the equivalence of brain death with death rests upon two assumptions that I think are unsupportable and let me describe those to you and then try to make sense about all of this so false assumption number one the uniform determination of death act in the United States requires the complete absence of all functions of the entire brain including the brainstem but we know that the diagnostic tests for brain death actually examine only a small number of all possible brain functions and we know that brain death patients may retain a number of functions some of which are actually quite critical such as controlling hormonal balance that regulates salt and fluids in the body and even temperature control so it's always been interesting to me that when we do a brain death exam we look very carefully whether the pupils constrict to life but in fact that's a rather minimal physiological significance so any of us could live just fine if our pupils didn't constrict to life but the testing doesn't look at really physiologically critical brain functions such as regulation of salt and fluid balance with the hormone vasopressin, temperature control it's always struck me one of the ironic things about the brain death exam is that in order for the exam to be valid the patient has to have an essentially normal temperature but if the patient has an essentially normal temperature that means that the brain's functioning so there's sort of a catch 22 going on here so I think there's a real problem between the requirement of the law the complete absence of all functions of the entire brain and the actual testing that occurs the second false assumption I think is actually the more problematic one and I'm going to have to abbreviate this here with the limited time that I have so you're going to have to trust me on some of this but patients diagnosed as brain death have been regarded as dead because they have been thought to lack a fundamental requirement of biological life which is the integrated functioning of the organism as a whole so if you go back in the literature on brain death the idea here is that the brain kind of acts as a control center for the body and when you remove that control center the body just falls apart it can no longer maintain this integrated functioning of the organism as a whole and so in the 1980s when these concepts were being developed the idea was that without the brain the body would quickly disintegrate and the way that you knew that would be that the person would have a cardiac arrest and indeed in the 1980s the observation was that patients diagnosed as brain dead invariably suffered a cardiac arrest within a few days no matter how hard you tried to keep them alive within a few days the idea was the body would disintegrate it would have a cardiac arrest and that was proof that the brain death represented the loss of integrated functioning of the organism as a whole well that was true in the 1980s I think it's very clear that that's not true today mostly because of advances that have occurred in intensive care so today such patients can be stabilized in ICUs and once you get through a period of a week or two then all of these physiological functions can particularly in younger patients balance out and they may live for months or years in their nursing home with supports of a ventilator and a feeding tube now what kind of integrated functions do they show brain dead patients may digest food excrete waste, grow, develop by infections peel wounds, reproduce essentially they can do pretty much everything that a healthy human being can except for those functions that are related to consciousness which is absent so I know that probably most of you haven't heard the thread of this argument before and you may be thinking that I'm not I will say though that in 2008 the president's council on bioethics looked at this in detail, wrote a book about it and they fully acknowledged all the points that I've made here that the integrated functioning justification of brain death is no longer valid now where they went with that is another conversation we can have but I left it out in terms of the short time that I have well first of all let me say that I think that we see examples of this integrated functioning all the time around us so every year there's a case or two of like this these tragic cases where a pregnant woman becomes brain dead during gestation and their family asks that she be kept alive in the ICU for several weeks or perhaps several months until the baby can grow to the point where she can have a cesarean section and the headlines always look like this you know brain death Canadian woman dies after giving birth to a boy but if you think about what the way that we've normally constructed brain death this is wrong that what this headline should say is that a woman who has been dead for six weeks just gave birth to a baby boy and you never see the headlines framed that way because it seems quite non-plausible to any of us that somebody who's been dead for six weeks could actually give birth and I think it is implausible and that's because patients can retain very complex integrated functioning after the diagnosis of brain death perhaps the most famous example that's going on right now is the case of Jehovah's math a young girl who was diagnosed as brain dead after she had a post-operative hemorrhage following a tonsillectomy at Oakland Children's Hospital December of 2013 her parents rejected that diagnosis and long story, very long story short she ended up being transferred to New Jersey because they have an exception around recognizing brain death she had a tracheostomy in a G tube and I was just looking on the internet as of a week ago there was a posting that she's still living at home now in an apartment with a feeding tube and a tracheostomy I will say this I probably should get a different picture but it's a little bit misleading because it looks like she's breathing on her own she isn't, if you look under her clothing here you can see the outlines of the ventilator which is connected to a tracheostomy too she will never wake up she will never breathe on her own but in fact now two and a half years later she's continued to grow she's developed she's gone through puberty demonstrating I think the integrated functioning that is possible for these patients so how do we respond to these problems? well brain death does not represent the loss of functioning of the organism as a whole as our structure around it requires why then are not more of us upset that these patients are not in fact dead and I think that in the West we tend to overlook the fact that these patients are not biologically dead because we believe that they are irreversible and unconscious which is almost certainly true we can talk about that but I think there's little doubt that they are irreversibly unconscious and therefore we tend to believe that they are as good as dead and I think that that has sort of deflected some of the concerns about this biological functioning I think it is still an interesting point maybe a problem maybe not that the law requires that patients be biologically dead not merely as good as dead so why are there differences in views between the East and the West? well here I'm going to speculate I'm like a clear line here before this I think I can pretty much justify everything I've told you in fact now I'm speculating but very much along the lines of what we just heard in the West we tend to be courtesians that mind is distinct from body and we associate life with the mind I think Eastern cultures and religions tend not to be courtesians they embrace holistic views that are actually more consistent with the concept that death is the loss of functioning of the organism as a whole and you saw a lot of that the idea that life is not just a phenomenon of the mind but that it is distributed throughout the body and the body's functions so then why are Eastern cultures adopting brain death criteria? and here again speculation but the West has dominated the development of organ transplantation as a field and you know being the first there to get to make the rules of the game and one of the rules of the game early on was that brain death is equivalent to death and so for the East to participate in the international growth of this field they have had to, albeit reluctantly, capitulate to accept these norms and this has led, as Stu was saying to the rather curious way that some countries, Japan, I wasn't aware of China as well really have two distinct understandings of what it means to be dead if you want to be an organ donor you can choose to be dead in a certain way which I would say is largely a Cartesian understanding but for everyone else we're going to adopt the holistic view that is more simpatic with our cultures and traditions what about when we move to people who have come from the East to the West where it's really not so much a question of whether they're going to be donating their organs but more a question of when are they going to be diagnosed as dead and here again I think we see the incompatibilities article in The Atlantic just a short while ago about the difficulties of the Somali Muslim community in Portland, Maine with accepting the diagnosis of brain death and then on the right hand side this was a man that was cared for Beth Israel, Deaconess Medical Center a few years ago we did it in our ethics consortium where the diagnosis of brain death was not compatible with Buddhist beliefs so I think we see these issues recurring on an international stage around the transplant issue and then on a more local clinical stage with people in our own communities so last slide let me just say my conclusions here I think the concept of brain death assumes that the diagnosis implies the loss of integration of functioning of the organism as a whole we now know that this is not true and the complications are almost certainly irreversibly unconscious however in the West we still accept that brain death equals death because we are Cartesians mind is separate from body and we associate life with mind in the East life is seen holistically as an integration of body and mind which implies that brain death is not necessarily equivalent to death so I think our comments are very compatible and I look forward to having some conversation and I'll take the liberty of asking the first question you used the phrase a couple of times that the East lacks behind the West in acceptance of brain death and I think I know what you mean and I don't think you meant to take that metaphor too seriously but it does seem to imply that everybody is moving towards the appropriate goal and that the East is somewhat behind in getting to the appropriate answer about all this which is that brain death should be accepted around the world so that we can declare brain death people dead and donate their organs it raised the question in my mind whether providers in China where you were interacting with the providers believe this are accepting of the brain death standard in a sincere intuitive fashion or whether they're accepting of it in a legalistic or sort of they're sort of separating their philosophical commitments from their medical duties so I guess I'm asking about your intuitions about how Eastern providers view brain death intuitively I think the short answer would be probably the latter so as part of my research process I was looking online a lot at forums and how people were discussing this death and interestingly in China the pro side to people who are supportive brain death often quote say things like it's a modern scientific standard of death it's a sign that we are modernizing our medical field and we are aligning with the developed world and they use that as a reason that people should accept brain death so I think that reflects that the providers in China see themselves as lagging behind by refusing to accept brain death while I was interacting with them I did ask what do you think about brain death and a lot of them would give me this generic answer saying oh I don't think brain death really is aligning with the traditional beliefs of Chinese culture although they don't say any specifics of what the traditional beliefs are and how that applies to them it's kind of hard for them to verbalize that I think many of the traditional cultural context may be more amorphous as we are growing up but they would then switch to their rational I'm a scientist I'm a medical provider hat and say well I can see the scientific concept behind this I can see the different diagnostic test what exactly they're testing I can see the social utility of brain death so I think there's a lot of internal conflict among the providers as well we have two questions sure thanks so my name is Emily and we at my friend here are taking a class actually in Hover College one of the papers that we read was your paper in the New England Journal of Medicine last year about the definition of brain death I have a question for you both on that article and on this presentation so it seems that you're simultaneously advocating both to eradicate the definition of brain death we have right now but still to have something in place and have these kind of organ donations then would you advocate more of an organ donation definition of death that people can opt into instead of having this definition of brain death that you seem to believe is insufficient and it always I guess the public well first thank you for reading my paper so let's stick with brain death here the short answer I think let me make sure I'm addressing your question is that I believe that organ procurement from patients who are diagnosed as brain death is ethical but just not the reason we have traditionally claim which is that they're dead it is ethical because for two reasons first of all it's being done in the case of somebody who's given their permission to do that or even asked to have their organs donated and they're in a position since they're irreversibly unconscious where that donation is not going to be of harm to them or at least as defined by them it's not a harm their life is no longer a life that they want to sustain and so in the process of their life ending they would like to be able to give their organs and save the lives of others so you can see it's a little longer explanation than just well it's okay because they're dead but I still think it's okay it's just for a different reason does that hit it or not basically yeah so do you think it's valid to call it brain death or do we need to change the terminology I think we need to change the terminology terminology I think we need to identify what it is that they have which is permanently unconscious permanently ventilated dependent early the key characteristics there the president's council agreed with that too they adopted total brain failure as opposed to brain death because they didn't want to call it death either but they were identifying sort of what was going on was sort of the brain to do the things that it needed to do so I think that we were in agreement on that but I'd be more in favor of just calling it what it is clinically which is you're irreversibly unconscious and you're not going to breathe again I will say that in neurological societies there is discomfort with that term brain death because it's confusing it could mean death of the brain it's supposed to mean death of the organism so a lot of neurologists when they're writing about this like to use the phrase death diagnosed by brain criteria it's too much of an awful to use though so we don't have a good substitute for the phrase brain death like we might be going back to the 1950s term apne coma Ching do you have a sense of so the thing that has led to one of the major reasons that brain death is felt to be needed in the context of organ donation in the west is because of an informal rule called the dead donor rule as you know and what Bob has proposed doing is saying that we don't need a dead donor rule as long as we've got a patient who is not going to be harmed by donation and agrees to donate do you have a sense of whether that would be an additional concept that would have to be adopted or is that something that's already part of thinking about brain death in eastern cultures well dead donor rule is kind of a very dangerous subject to bridge if we say we want to abolish the dead donor rule then it's like moving this line just a father and father operate do we include persistent vegetative sick people do we include people who are just in a coma they're unconscious how much do we allow that talking about dead donor rule it's a controversial topic in China because of the current situation of organ transplant in China I think some of you might know that the main source of organs in China right now is death penalty inmates so right after they get the shot in their head they are immediately taken to the OR and they have all harbored organs because of this China has received a lot of criticism internationally and that is one of the factors promoting the government to do reform of the organ donation legislation and try to incorporate brain death into it there is also maybe unconfirmed reports of live organ procurement from certain oppressed groups in China and of course people who are doing that kind of report may have other agendas in mind but overall I think removing organs from a person that we see as still being alive is unethical and that would be unacceptable in the Midwest for instance Thank you very much Dr. Yang Sure, my question is a slight step forward from Kaz's question I asked you earlier that is based on your data you said that in terms of the numbers of how many professionals think that brain death is unethical, you said 69% that's about 75% of the US which is very similar and then brain death the question I asked whether you think brain death is actual death in China 55% said yes you said a lot of things that I asked you in your research did the element of what's actually happening in China's medical care based on the survey kind of raised the question or worried you in terms of it seems like you know for quarter of medical professionals I'm thinking that it's legal that's a big element as well does that tell you anything about the practice that's carried out in China in medical care? Well I've got those that some hospitals are declaring patients dead or just to push up a ventilator for medical expertise I guess or some people actually following certain guidelines there's discrepancy in care doesn't that generate even more ambiguity amongst the trans population when it's already starting a medical profession itself? Yes so that that is why medical professions in China are actually advocating for a uniform national guideline and also law either saying brain death is legal or not and here's how you diagnose it clinically the Ministry of Health in China has been working on drafting such a guideline for over 20 years but they never brought it to the point where it could be approved by the legislative branch just recently they held a national conference on the topic and said okay we will move toward possibly having a brain death law but it's still probably years ahead to do that and that certainly creates a lot of confusion brain death is not completely absent in China there are certain municipalities that allow declaration of brain death by the institutional guidelines so certain hospitals mainly a handful of major transplant centers in China are able to declare brain death but majority of the medical providers are not and they do not feel comfortable doing that in practice because of lack of medical professional guidance and also legal protection and then again my project the research was based on a clinical scenario so even though 55% said okay I think this patient is dead if they actually face such a patient on the floor in the ICU would they actually declare the patient that's another question I think probably far less people would actually do that so my name is Dave I'm a medical student but a neurologic resident in two months so I'm getting there congratulations so I was really interested in what you said about how people's consensus about what constitutes life or death doesn't really seem to depend on religion or philosophical beliefs at least as far as the regression indicates in that these decisions tend to come from a much more intuitive place and that's really interesting to me that seems right that our identification of life is a very visceral kind of intuitive determination is kind of like born in that way so we know what we see so and you know it seems like we come up with these rational definitions to help more of our intuitions but given that we see these differences in intuitions I'm curious what kind of understanding helps to inform those intuitions at least in the case of western cultures or eastern cultures it is not philosophy it's not religion is it innate or what kind of factors contribute to those intuitions that is a great question yes I was very excited to see that in my project that emotions maybe one of the very important factors of how we make decisions the way we were assessing that is in one of the clinical scenarios I said this patient is a family of yours of the provider then would you decide this patient dead or not and people showed that when the patient was their family they are less likely to take their patient dead for that to inform me that emotional connection plays some kind of role but then again emotion is very hard to study in any kind of research project especially if you want to do a controlled or a valid experimental design my guess would be it's probably a combination of what is like innate and also these cultural influences maybe they are less on the explicit level like when we make a decision we don't explicitly think oh because confucius said so and so therefore I should do this but we feel like it's more natural to behave this way that's the way we are raised or we observe other people behave that way I think you've hit on it I think that so many of the beliefs that we bring into the world are formed in our childhoods we've lost track of where they came from and yet they can be deeply held beliefs so I imagine it's a combination of all of those things that go into who we are most of which we have no ability to access at this point first of all culture is a typical heavier pattern so I think it is a cultural change and my question is in the US the court has never punished physicians when the physicians follow the professional codes in law and the now the real physicians are going to or terminologies are going to change and is it because of the informed causing of conversation or matters or some other because the then the is it true that the reality is changing more or more in both of them or in the such as some more functional or I don't know if I understand your question I mean it's our cultural norms changing around it changes in the terminologies I think maybe what you were getting at and I do think that how we label things is ends up being very very important and I think that's been one of the powerful ways that brain death has remained non-controversial because right in the word is death so it sort of deflects any challenge or questioning right in the way that it's labeled and when we start to call things different terms I think then yeah there is an opening for more dialogue in society and the potential for change while I'm walking Qing do you have a sense that you had a definitional problem in that asking a Chinese respondent about religion the question about religion might mean something different to a US respondent in that intuition that somebody from the US might call a religious intuition or impulse we not get called religious in China even though it arises from the same sort of instinctive place yes I think it's possible in China religion and culture may be a little more intermixed for example Confucianism is it a religion or is it a cultural concept there are Confucian temples Confucian temples where people actually go worship but people may not speak of it as a religious place where they're more likely to think of like a Christian church as a religious place I think that's possible the way we ask the question questions about religion in my survey there are many two questions one is do you see yourself as a religious person as a person of religious faith just straight forward another question is how often do you visit places of worship and a lot of people in China who who said that they are religious and even those who said that they are not religious all said they sometimes go to places of worship and that included one of the things that we listed as a choice is fog temples or fog memorial places so I think culture and religion may be more intermixed and gentlemen explain the criteria for calling the patient irreversibly unconscious and when they are considered that how short are we that they are? that's a very challenging question so let me try to address it this way I think that we have had an intuition in our society that we understand the meaning of consciousness even though when you actually try to put it into words it gets to be very difficult but let me begin with an assumption that for the most part we feel that we know when someone is conscious and we know when they are not one of the difficulties around that has been that a state of permanent unconsciousness the persistent vegetative state was we thought we had a lot greater certainty in making that diagnosis years ago than we think now and whether we are now learning that many of these patients that we thought were permanently unconscious were not and they were misdiagnoses not in the sense of anyone being sloppy but you could only tell they were conscious when you put them into an fMRI machine and you watched how they responded to the questions and that sort of thing so I think the whole issue of when a patient is conscious or not has been thrown into a great deal of uncertainty that being said and I had this conversation with Toss and others recently what makes brain death different isn't whether it's the presence or absence of consciousness we believe that pvs patients are unconscious and brain death patients are conscious but I do believe that we can have a much greater degree of certainty around brain death because the degree of destruction you see on the imaging tends to be massively more and it's not true in every case and I can't give you data I doubt any data exists but I feel very confident saying to a family when I've diagnosed their love for brain death they'll say is he dead and my response is he's legally dead because they are legally dead they've met the legal criteria for our death but I do feel very confident maybe more confident than I should be I don't know in saying that they will never wake up again given the degree of damage that we typically see on the imaging I wasn't prepared for that question I didn't give the best answer that I think I would have but it's a really tough one I don't know Toss you've thought about these things a lot too Bob would you agree this is a little problematic but would you agree that it's never been seen a patient properly diagnosed using the proper tests with brain death has never regained consciousness or any neurological function I'm glad you said that because I always say that that there's never been a case of anyone correctly diagnosed as brain death who's ever regained consciousness that being said it's a little problematic the problem that you may be responding to is that the term brain death gets thrown around a lot and it is applied to cases in which formal tests of brain death have not been performed I've seen literature even in the literature but certainly in the lay press cases in which patients in coma, vegetative state, minimally conscious state were described as brain death and so popular reports you cannot rely on their description of what state patients were in so this is why we're saying that no well-described case of somebody who's been properly diagnosed as brain death has ever gone on to have any recovery now most of those vast majority of those patients have their life support stopped as soon as they declare brain death so you might ask how do you know that nobody would regain consciousness we've talked about the numbers for this the other day it might be dozens of cases of patients who've been kept on life support for months and even years after being declared brain death and none of them have ever shown signs of neurological recovery so the data are limited but there's never been a real case my name is Laura and I'm from Harvard Divinity School and I'm actually a resident chaplain at the Brain and Women's Hospital so my question is basically we work with medical teams at the brain after a medical diagnosis such as brain death is made we're sent in to kind of talk with the families about what that means and to me this is really interesting the thought of this being still a functioning organism to a certain extent and still being brain dead affects families who might not have a patient who has an advanced directive for example especially if it's a young person and there I have heard of other chaplains saying like this family is upset because they were like wow you know our child is never going to be able to go through puberty they're never going to be able to grow they're never going to be able to change but while in reality that might actually be true they might never be conscious again but they might actually have those opportunities for yeah to grow as an organism so my question is now that we know these things are what their needs are is there a way that you all recommend us as chaplains to kind of assist the medical team in having these hard discussions with the family what their values are you guys are asking really hard questions let me since I do work in an intensive care unit and I am in a position of declaring patient's brain death I've struggled with how I deal with the children here and how I work with families in the unit as I just mentioned I do use the terminology of legally death because that is the case I have never in my career had a family ask me what exactly do you mean by legally and what's the other stuff you're not saying I don't know where I would go with that but I do think in our health care system we deliver care as a team activity and it would be irresponsible for me not to be a team player in that regard and at the same time I can come and have conversations with groups like this the challenge I think of the johai-magnath case for me is that when families have said what are our choices now the answer can be I've already filled out the death certificate um and there's two things that can happen now there's a possibility for your child to be an organ donor or we will just turn off the ventilator and the child will go to the morgue but what do you say now that there's at least one child where the family said we're not going to accept that and where there were religious communities in the country that we're willing to have that child stabilize another hospital and ultimately living in the family's apartment now for two and a half years is that something that we're obligated to either disclose or if we disclose it do we say well but if you want to pursue that you're on your own or do you present it as an option which I can tell you for the people I work with in the ICU they're horrified at that thought so these are the things that I'm struggling with and so I don't have any answers for you I think that in itself is helpful because we struggle with it too the families do as well so it's just the question of how do you make that more vocal I guess so thank you for the question you can make sorry on that master's student program essentially just answered my question I think but I'll frame it anyway the way I understand the Japanese law and so my question is what is the reputation here we adopted such a thing where people could say because of the highest case you know I think that that's potentially going to become an issue so for in your experience when you say I've already filled out how much resistance do you get on that you know actually I think we have some way of answering that in that the state of New Jersey has for decades now had a religious exemption to brain death that was brought to them by the Orthodox Jewish community and it's been in existence for years so that in New Jersey well it's not just limited to people who are Jewish anybody can say I don't accept this diagnosis and you're not going to declare me dead on that basis and it's not been a big deal at all I mean it's not like New Jersey is the place where dozens of people have been you know in the ICU's or at home on ventilators who have been brain dead or that organ donation has ceased to occur in New Jersey so they we've already done that experiment we've tried it out and it seems to be no big deal and a number of philosophers Bob Beach in particular has said we ought to give people the choice given what we know about what the diagnosis of brain death means and I suspect if we did probably little would change your question there's one thing I'm confused about you were talking about how in the western world we were viewed more as an individual whereas in the eastern world it's more a system and we're more intrinsically linked with the people around us spirits things like that how do you explain what do you think is the reason that the western world organ donations are more likely to happen than in the eastern world is the case well I think individual choice plays a role in organ donation in the west you have a driver's license and you can designate whether you want to be a donor or not and if you designate yourself as a donor there nobody else can say I refuse to donate to your organs but it's your organs I think that individualism that autonomy is an important concept in the west in the eastern world often for example in Japan Japan revised its law about brain death in 2010 but before the revision families can overwrite the individual's choices so the individual may carry an organ donor card but when it comes to donation the family can say no I do not want my husband to donate organ you cannot remove it we would not do it but because of that limitation organ donation especially from brain death owners was very very low in Japan for the 10 years 12 years after the brain death was legalized they only had maybe 150 or so on the brain death of the donors so in 2010 they revised it from a more social utility perspective they said family does not need to give consent so since then their organ transmission rate actually jumped up I would actually expect to be more natural that people could give themselves as part of the system to donate their organs and people would give themselves an individual that's an interesting point of view about how you help others but when it comes to the your relationship in the system it's really your relationship with the people you care about your family you or the people who you knew in real life, in the life or your dad so in a way it's not about altruism but it's about obligations to the family and to those who have direct contact so we do have to say goodbye to the people who are joining us by our web stream for anybody who is interested in staying and continuing the conversation we will have some food and we will rearrange the table so I encourage anybody who would like to to stay and continue the conversation for everyone I'd like us all to give our speakers a round of applause