 All right. Good evening, everyone. Thank you so much for being here. I'm Bob Trug. I'm the director of the Center for Bioethics at Harvard Medical School. And I'd like to welcome you to the public forum that is preceding our annual bioethics conference over the next couple of days, which is on the question of defining death, organ transplantation, and the 50-year legacy of the Harvard report on brain death. You know, my kids have always told me, dad, if you want to be popular, you're going to have to talk about something besides death. And I'm glad to see that there's at least a few people here who share my fascination with the subject. Before we begin, though, I want to say a very big thank you to the Massachusetts College of Pharmacy and the Health Sciences. I can't tell you how they bailed us out here. We had this program planned many, many months ago. The dates were all fixed. And we could not find a venue anywhere. And I called up Dian and Ken and said, any way you can help us out. And they have been so kind and gracious to us. We have the provost here from the president on down, the administrative staff, the IT staff. You guys have just been unbelievable. And so I want to thank you for making this possible All right, so what are we talking about here? If you go back to the late 1960s, there were a lot of developments that were happening in life-sustaining treatments, particularly mechanical ventilation. And people were beginning to ask the question, when are these ventilators saving lives? And when are they merely prolonging death? And similarly, this was when organ transplantation was just beginning. And people were asking questions about, when is it OK for us to take organs from a patient? And so in 1968, under the leadership of Henry Beecher, a committee was formed at Harvard Medical School to really address both of these issues with a new way of determining death. So in addition to the traditional way of determining death through your heart stopping, this was a way of declaring death based on the loss of neurological function. Brand new idea in that sense. Through the 1970s, this gained traction. 1980, there was a president's commission, which endorsed it, and then came up with our brain death law, the Uniform Determination of Death Act, or the UDDA, which has now been adopted in some form by all 50 states. The concept has been enormously successful in all of the ways that they imagined. But interestingly, it's also had a lot of controversy around it. One of my favorite lines in the literature was written by Alex Capron, who's here with us tonight, when he wrote, if one subject in health law and bioethics can be said to be at once well settled and persistently unresolved, it is how to determine that death has occurred. I think this sort of captures it all. The most recent area of controversy has been the case of a young woman, Jehi MacMath. I'll tell you about her story in a moment, but I'd actually like to say that it's not just one story. I think there's two very important stories here. The first has to do with the concept of brain death and how her case is important to our discussion on that is going to be one focus of what we talk about tonight. But the other story about Jehi MacMath is a question about race, culture, economic status in our society, and how some groups of patients have been denied access to medical treatments that are available to the rest of us. And I think this is another important story to be told about the MacMath case. Professor Michelle Goodwin, who's going to follow me at the podium, is going to focus on this aspect in her talk. The bios are all in your brochures, but I'll briefly say a word about our speakers this evening here. Professor Goodwin holds the Chancellor's Professorship at the University of California in Irvine. She's an international expert on issues related to human rights, reproductive justice, bioethics, and health law. So she'll speak to these cultural, political, and racial tensions that I think are present in the MacMath case. Professor Alan Schumann will speak next. He is a pediatric neurologist, former vice chair of neurology at UCLA. And along with Jim Bernad, I think these are the two neurologists that have really had the biggest impact on how we think about the concept of brain death. And Professor Schumann's work has been influential from the councils of the Vatican to the President's Council on Bioethics in 2007. He has examined MacMath, and he's going to share with us his assessment of her neurologic exam at this time. Much of this has not been publicly discussed anywhere else before. Do you have a special request when he is speaking if you could not take photographs or videos of the material that he's presenting due to its sensitive nature? So if you could refrain from that, you can take all the pictures of me that you want, however. Finally, we've called upon Professor Arthur Kaplan to help us make sense of this, provide us with guidance for how to move forward. Professor Kaplan is a philosopher. He has founded and run programs at the University of Minnesota, the University of Pennsylvania, and currently at NYU. He's an authority really on any topic in bioethics, but he is particularly well-known for his expertise and leadership roles that he's had in the ethics of organ transplantation. So let me begin with a little overview of the MacMath case. So this is who we're talking about, Jehi MacMath, obviously before her illness, and then more recently, and we'll talk about that. So in December of 2013, 13-year-old girl admitted to Oakland Children's Hospital for complex pharyngeal surgery for obstructive sleep apnea. She was admitted to the pediatric ICU, and later that evening, she began spitting up blood, which led to a frank hemorrhage. And about 12.30 in the morning, she had a cardiac arrest. She was resuscitated with return of spontaneous circulation, but with severe neurological injury. Two days later, the chief of neurology at the hospital performed an exam, which was consistent with brain death. He also did an EEG, which was isoelectric, so she had flat brain waves. The following day, the exam was confirmed by a second neurologist, and so at that point, she was formally declared to be brain dead. On the 15th, the hospital informed the family that the ventilator would be removed the following morning. This is fairly routine after the diagnosis is made if a patient is not an organ donor, then the ventilator is stopped within a reasonable period of time. But the family objected. They retained an attorney, and the hospital agreed to continue ventilation temporarily. On the 20th, the judge issued a temporary restraining order requiring the hospital to keep McMath on the ventilator for the time being, and the judge asked the chief of child neurology at Stanford to provide another opinion and examine McMath, which he did. The exam was again consistent with brain death, and the cerebral blood flow study was also confirmative. There was no evidence of blood flow to the brain. On Christmas Eve, the judge ruled that McMath was legally dead, but he did require the hospital to continue ventilation for some period of time to allow the family to explore other options. On the 30th, further legal motions were filed, but these became moot when the family in the hospital agreed to release McMath to the custody of her mother with continuation of the ventilator and the intravenous fluids. The family requested a tracheostomy and a feeding tube before she was released. They did not agree to do that. Per the plan, on January 3rd, the coroner issued a death certificate, which cited her date of death as December 12th, the day that the brain death was confirmed for the first time. And then on January 5th, per the plan she was released to her mother's custody, transported to a hospital in New Jersey where tracheostomy and surgical feeding tubes were placed. Why New Jersey, you might ask? Well, New Jersey has a law that prohibits the determination of death by neurological criteria when this would violate the personal religious beliefs of the individual. And its law also prohibits payers from denying coverage to individuals based on their personal religious beliefs regarding brain death. So where are things now? She's been discharged from the hospital. I believe that most of the time she is in an apartment in New Jersey where she's cared for by her mother and nurses. She has a ventilator to breathe for her. So in this picture here, you can see the ventilator in the background there. What you can't see under her shirt is the tracheostomy tube, which goes through her neck into her windpipe and is attached to the ventilator. She's fed through a tube in her stomach and receives supplemental hormones. So four years after she was certified as dead, she continues to grow and develop. So why is this case interesting? Well, I mean, it's quite a case. How do we make sense of this? And in particular, we have here a child who continues to grow and develop four years after being declared dead. How does this fit with any common sense meaning of the word dead? So in preparing my comments for this evening, I wrote them down and then I wrote them up. And they'll be published in the Journal of the American Medical Association shortly. But it is available now online at jamannetwork.com. Although you don't have to read it, because in the next less than 10 minutes or so, I'm going to tell you what it says. I think that the key to understanding the case of Johai McMath centers on appreciating the differences between biological and legal categories. The law tends to favor bright line distinctions. Yes or no, black or white, no in between. Whereas biological categories tend to involve a continuous spectrum. And I'll give you two examples that everybody always uses when they make this point. The first one is how we differentiate the category of child from adult. So from a legal point of view, the transition literally occurs in an instant. On the moment a person becomes 18, they acquire a completely new legal status. They go from being a child to a person with all the rights, privileges, and obligations of adulthood. So legally, it happens in a moment. But biologically or psychologically, obviously, typically not much has changed for that person from the day before. So the law drawing a bright line across a continuous biological spectrum. The other example is the category of sighted versus blind. Legally, people are blind when their vision is poorer than 20 over 200. But of course, we all know that visual acuity occurs across a spectrum. So we've got the law drawing a bright line on a continuous biological spectrum. Now how might we think about this in terms of brain injury? Brain injury also occurs on a spectrum. At the top, we have the uninjured brain. But there are some signposts as we progress through brain injury. So we have the minimally conscious state. The permanent vegetative state. Near the bottom, but not at the bottom, is the state we call brain death. And then really at the bottom is where the brain is entirely necrotic, what's sometimes called a liquefied brain. And these have their conceptual correlates. So for the minimally conscious state, that's conceptually somebody who is only intermittently or partially conscious. The permanent vegetative state is a state of irreversible unconsciousness. Brain death is irreversible unconsciousness. Plus, you have to have substantial damage to the brain stem, such that the parts of the brain that drive respiration are destroyed. So patients who are brain dead cannot breathe at all on their own. And when you don't breathe, that's called apnea. And so conceptually, we can think of brain death as irreversible apnic unconsciousness. And then at the bottom, we have no function at all. So that's the biological way we might look at this. What about the law? For most legal purposes, a bright line distinction between alive and dead is critical. Think about it. We must know precisely when people may be buried, when their wills may be executed, when efforts to keep them alive may be terminated, when they may donate their organs, when a crime should be considered a homicide. All of these, I think, really need the bright line determination of the law. So if we're going to draw a line across this continuous biological spectrum, where should we draw it? Early on, people suggested it should be drawn here, that you should be considered alive unless your brain was completely liquefied. Others, including two people we have in the room, Bob Beach and Dan Wickler at various times, have proposed that the line should be drawn at the level of the permanent vegetative state, because this is when you are irreversibly unconscious. And everything that matters to who we are as beings depends on consciousness. So if you've lost that, you should be considered dead. We didn't choose either of those. The line that we chose in 1968 with the Harvard report and ever since, the line that we've chose is the point of irreversible, apnic unconsciousness. And we've written these into our guidelines. We have guidelines from the American Academy of Neurology for adults, the American Academy of Pediatrics for children that define when a person is brain dead. And I want to emphasize that the line they draw is very sharp and very precise. So if any qualified physician walks into an intensive care unit, they're going to be able to go up to a bed space and tell you definitively, yes or no, this person is or is not brain dead. They're above the line or the below the line. It'd be extremely rare for it to be uncertain. So this draws a very sharp line across the biological continuum. So that's kind of a model of how we might think about it. How might it apply to the McMath case? Well, I think one of the surprising aspects of the case is that she has had this prolonged somatic survival, and now more than four years. And here I think my experience in pediatric intensive care I think has helped me to think about this in a different way, because we take care of children at all levels of brain functioning. Fortunately, most of them have an uninjured brain, but we also have children who are a minimally conscious state, many in a permanent vegetative state. We have children who are just above that line that we call brain death. And then we have those with varying degrees of injury below the line of brain death. Now, those above the line are all alive. And we always offer to use life support. And of course, most of the time, that's what parents want. Some of the time, particularly for children near the lower end of that, parents will say no. The degree of brain injury is such that we want to stop life support. And of course, we respect that too. But our experience is that for these children who come in, like for example, somebody at this point right here, they come in, we treat them for their pneumonia, this, that, and the other thing, they get better, they go home, these children can live for years. Now, below the line, we don't offer treatment. And I suspect that in 2013, Jehi McMath is probably somewhere around this point here, just a little bit below the line. But the point I want to make is that biologically, she's not that much different than a child a little bit above the line. Biologically, they're very similar. And so, since children just above that line can't live for years, I don't think it should be surprising for us that somebody like Jehi McMath can also live for years. So if that's true, why aren't there more cases like Jehi McMath? And I think we have an answer for that too. The diagnosis of brain death is almost always a self-fulfilling prophecy quickly followed by either organ donation or ventilator withdrawal. Very few families insist upon continuing life support in the face of such a poor prognosis. Even those who do insist are typically overridden since brain death is recognized as legal death in almost every state. But in the rare cases where life support is continued, I think it should be no surprise that prolonged biological survival is possible. Now, the other question that comes up is, what if Jehi McMath is no longer brain dead? So in a few minutes, Professor Schumann is going to tell you about his assessment of her neurological status and doubts he has that she currently fulfills the AAP criteria for brain death. If true, this could be the first case suggesting that the diagnosis of brain death by established criteria may not be irreversible. And this could really be kind of a bombshell. You know, when I sit down with parents whose child has been diagnosed as brain dead, I can look them in the eye and I can say, you know, never ever has there been a case where we've made this diagnosis and anybody has ever gotten better. And I think that's been an important thing for me to say. And if what Professor Schumann suspects is true, then we won't be able to say that anymore. And I think that that's going to be important. But one of the final points I want to make here is that even if it is true, perhaps it should not be surprising. And let me say why. So going back to our spectrum here, we know that, this is actually a very interesting area of neurology right now. We know that there are patients who were thought to be in a permanent vegetative state. They thought that they were going to be permanently unconscious. But now several years later, they've actually improved to the level of a minimally conscious state or even beyond. Something that was thought to be impossible before. You know, brain injury doesn't always get better. Sometimes it gets worse, but sometimes it gets better. These cases have been clearly documented. If those are true, then why would it be implausible necessarily to think that over a few years, Jeheimic math has also had some improvement in her brain functioning. Now biologically again, that shouldn't be all that surprising to us. Of course, the striking thing here is that by having some degree of improvement in her functioning, she has now crossed that legal line that we've drawn. And so legally she's gone from being in the dead portion to being in the alive portion. And I think that's gonna be an important thing for us to grapple with and to think about how we wanna talk about that and how we want to explain it to others. So in closing here, I think in making sense of the McMath case, I think with regard to prolonged survival, we know that children with brain injury similar to, but slightly less severe than that of McMath, may survive for years. So I don't think it's surprising that McMath has survived for years and she could survive for quite a few more. This by the way is not news. Alan Schumann has documented a number of cases of this in the literature. And in fact, she's not even close to a record. The longest clearly documented case is somebody with somatic survival after the diagnosis of brain death for more than 20 years. So at four years, McMath could go on for quite some time. And then secondly, brain injury may improve or get worse over time. Many documented cases of patients in a PVS have improved to an MCS over several years. Should it be surprising if a similar type of improvement sometimes occurs at the more severe end of the spectrum? However, I do wanna conclude. I think that this case does not present a fundamental challenge to the concept of brain death or the UDDA if we understand those concepts in terms of how legal categories relate to biological categories. In my view, the UDDA draws a very reasonable bright line at the level of irreversible, ethnic unconsciousness. I think it's really important for us to remember this is a very, very severe degree of brain injury. And so I think it's quite a meaningful line and a reasonable place to draw the line. Furthermore, this line has enjoyed wide societal acceptance and has truly saved hundreds of thousands of lives by making organ transplantation possible. So I'm gonna stop there and we're gonna have discussion obviously at the end. I'd like to turn it over to Professor Goodwin now at the podium. Thank you. All right, it's a real pleasure to be here. Thank you so much for having me here, Bob. Thank you all for coming. I have friends who are in the audience and I'll be scoping around to see if I can actually land my vision on you. I've been asked to speak to some of the cultural components of this, what this means. So it may be a little bit of a pullback from what you just heard and then we'll open up with more nuance and I'm doing this low tech. I know so many of us are used to just clicking through our slides and those were good slides, Bob. Those were very good slides. But I'm gonna walk us through in a low tech way of a conversation and open it up for later conversation. The first thing that I want to offer and this relates is to think about the 50th year anniversary of the passing of Dr. King and you might wonder why in the world would that be relevant to talking about this particular case? But it does have some resonance and that is in 1966, Dr. King was asked why was he going all across the country and talking about more things than just people being arrested for protesting for their civil rights in the South. And he said, I refuse to segregate my moral concerns. It was that same year that Dr. King said of all of the forms of inequality, injustice and healthcare is the most inhumane. Now you might wonder what we know Dr. King for is in fact those protests supporting voting rights to insegregation and education and the housing and so much more for any of you who heard him when he surrendered the floor so that Fannie Lou Hamer could actually speak about voting in the Mississippi Freedom Party and her speech about what she encountered in others all in what she said, the account of wanting to vote. And she spoke of this inhumane brutality of being beaten in all sorts of ways and in her head and so forth just because she wanted to vote. And yet with a backdrop of all of that he would say that injustice and healthcare is the most inhumane. You might wonder well why is it that Dr. King could come to that conclusion given all of other devastation that we knew of the time around 1966 and before. But I would venture to say that Dr. King was thinking of a variety of things. Dr. King was well aware of African Americans dying on the steps of segregated hospitals in the south being denied treatment. There was no law at the time that permitted them or gained them a right to have access, title six later did, but he recalled those times. Dr. King knew well about the medical experimentation coercively so against black bodies that had extended through the period of slavery into modern times. Some of you have read about the HeLa cells and Henrietta Lacks, but more thinking about the kinds of experimentations by people like Marion Sims and others. It would be hard to say that that was in fact voluntary and consensual when African American women were being roused in the night and you could find this in Marion Sims autobiography. It's so revealing as he talks about having epiphanies in the middle of the night and rousing the black women that he kept at the back of his house and then lacerating them, experimenting on them as he tried to come up with new technologies in the reproductive healthcare realm. But Dr. King also surely knew then about the massive scale of our own version of eugenics in the United States that was carried out across racial lines but implicates class and that is to say the forced sterilization of black women throughout the South. And sadly we've even seen contemporary cases of it, but it was really quite robust in states like South Carolina, North Carolina, Mississippi and so forth called the Southern Ependectomy. Including being done on young girls as young as 10, 11 and 12 years old. For those of you who are interested in hearing about the narratives of people who have survived that, Elaine Riddick does a very powerful job of talking about what this meant in her life. A raped girl who when she delivered was sterilized and she didn't know about this at all, only had wondered over the years why it was that she couldn't become pregnant until finding out as an adult that she had been sterilized against her will and against the will of her grandmother. But it's important to know that that's not just a racial line, that's also a class line. For those of you who are familiar with the case Buck v. Bell 1927 case that went before the United States Supreme Court. As a case that actually involved another young girl, she was white, her name was Carrie Buck. Carrie was poor and lived with a family that was somewhat confusing. They were a foster family but they put her to work. She was poor. It's said that her mother was an alcoholic and a prostitute and was held at a place called the Virginia Colony. Carrie was raped by her employer's nephew. She became pregnant. And in Virginia where they were experimenting with eugenics laws, the first state to have a eugenics law was the state of Indiana. There are other states that adopted such laws and there were efforts to try to make sure that every state would adopt a eugenics law. Virginia did. And its law provided for the sterilization of people who were thought to be socially and morally unfit. You can imagine how broad that category is. But you can also know the people who are left out of that. Wealthy people are never judged to be socially and morally unfit. At least not to the extent that someone could sniff anything on their body and get away with it. In her case, she was taken to the Virginia Colony and she had a test case that went before the Supreme Court. Her lawyer was actually a eugenicist, a person who supported eugenics. In the case went up before the United States Supreme Court to determine whether or not it would be legal for the state of Virginia to forcibly sterilize individuals like Carrie. And the Supreme Court, in a near unanimous decision, said three generations of imbeciles is enough. The authority that the court under Oliver Wendell Holmes was 1927, compared sterilization, forced sterilization to vaccination, said that the power and authority that a state had to impose vaccination was broad enough to cover, quote, snipping the fallopian tubes. The court said better than for offspring of folks like Carrie to starve for their imbecility, the court said, or to blanket communities in crime, society was better off not allowing them to continue their kind. And so it wasn't just black folk, in fact, that had to be concerned about this kind of course of medical interventions, but also poor white people as well. And that was 1927, but the campaign of forced sterilization did not actually end there, and the campaign continued even after World War II. And the final mark in history that I'll share with you, but there's so many points along the spectrum, and this is one that arises quite often in thinking about race and medicine in the United States. And that happens to be what's euphemistically known as the Tuskegee experiments, which lasted more than 40 years in the United States, and this is where a campaign between Johns Hopkins and also the United States government engaged the practice where hundreds of African-American men, many of whom were illiterate farmers, who had syphilis, were denied appropriate care and treatment and transparency about the medical study that they were in. Many people confuse this experiment thinking that the experiment was really about monitoring them when they were alive. If you read the documents actually involved in the medical experimentation on these men, you know that it wasn't about their life, it was about their death. They wanted to hasten their death so that they could examine the bodies after death. What so many have seen as so cruel in that backdrop is that even after discovering the benefits of antibiotics and penicillin, these men were yet left untreated. They were given the equivalent of sugar pills for decades. They infected their wives and their children, were born impacted by their untreated diseases. So surely when Dr. King said just two years before he died that of all of the injustices that in healthcare, of all of the forms of inequality that injustice in healthcare is the most inhumane, I can't help but think that it's part of this backdrop that he was referring to. Now how does that implicate our charge today and over the next couple of days in terms of what we think about? Are these issues of the past, do they have any kind of relevance in our present? And I would venture to say that in fact they do. For example, how many of you are aware of the study that was published last year and it was a study of University of Virginia medical students and residences and it appeared in the Washington Post. Are any of you aware of this study of, okay just a couple folks, what's a fascinating study so I commend you to look at it because it's a kind of fast forward to see where we are and the study asked the students and the residents questions with regard to race. Now questions that if I asked this audience you'd say those are just ridiculous questions such as do black people and white people have different density of skin? You'd say well that's just kind of silly who would go around asking that well in fact researchers did and it turned out there was good reason for them to do so because they saw across first year, second year, third year, fourth year medical students and residences that they thought yes black people and white people have different density of skin. That black people have a different tolerance for pain than white patients do and down the list. And I urge you to look at it because it places these historic moments in a more relevant present context. And as we've tried to get our mind around these issues scholars have Edmund Pellegrino in 2007 it was published a book about African Americans and bioethics, a great book. A few years before the Institute of Medicine did a book on unequal treatment and this ties to Jahai's case and that is in the book it was an effort to as best as possible look across categories of care and treatment and that is to say across these various areas of care and treatment when might there be unequal treatment that could be detected and this was across hundreds of categories on every category in which they studied there was unequal treatment and the unequal treatment usually went something like this which was that white people give better and more treatment better quality of care than African Americans and there have been studies since then to unpack well are there disparities when one accounts for education when one accounts for insurance when one accounts for the various things or you'd say well look this only happens amongst the poor certainly it doesn't happen when people are better off and unfortunately consistently even people who are better off who have quality insurance who are educated still experience disparities in terms of quality of care and treatment but it is fascinating that in the study there is only one area where it happened that African Americans received more treatment than whites did and that was African Americans were six times more likely to have a limb amputated than their white counterparts so how does this relate to the backdrop of the case in which we're talking about because on one hand race really shouldn't matter culture and economics really shouldn't matter at all as John Parris would say dead is dead and it doesn't really matter what we're talking about in terms of race but I think what makes the case complicated from the parents point of view and for those who've come to the support of parents happens to be the underlying questions of care and treatment and that is it shouldn't be an obvious outcome or even a near obvious outcome that after a tonsillectomy that there should be a dead 13 year old that's the underlying challenge the underlying quality of care and treatment before getting to the question of what is death what is brain death and so I hope that in our time today and over the next couple of days we'll begin to explore that as well because it is an important piece of the discussion here but I also want to raise with you the importance of thinking about what technology means in these spaces and that is to say technology outpaces law although in this case we do have law the UDDA that was mentioned by Bob and the California Code Code 7180 right she was declared brain dead in California and the definition of the California Code is the following part one irreversible cessation of circulatory and respiratory function and part two irreversible cessation of all functions of the entire brain including brain stem is dead a determination of death must be made in accordance with acceptable medical standards one would say that the law is pretty clear there and that death had in fact been declared New Jersey provides an exception as Bob mentioned and that exception is that a neurological condition of death can't in fact be imposed when it violates religious beliefs and that makes this realm deeply complicated and that's not just complicated by race white and black that could be any particular religious community that believes that death simply doesn't occur when the skin is warm and when it happens to be moist which is what her parents said but I want to go back in my closing to this question about technology and how technology complicates this because being respirated and intubated necessarily leads to biological functions that would allow the skin to be warm and possibly if moisturized the skin to be moist right? I mean that's it and so how do we reconcile these issues and these times with the technology that provides for the very circumstance that we're looking at here and I'd also say that one other piece of complication with this along that spectrum of what is dead what constitutes brain death what constitutes a chronic vegetative state minimal consciousness comatose etc is also how doctors will intervene in this space and here I want to just flag an area that I see that's complicated with doctors that's on the rise and that is within the realm of reproductive health care and also end of life there are more doctors that are claiming their own conscious abilities whether to treat or not to treat whether to give care or not to give care and this is irrespective of what we know about science and biology and I would suggest that it will further complicate these spaces into the future and with that I'm going to close and look forward to hearing the other comments thank you so much thanks Bob for inviting me to share some little known information about Jahai's case let me begin with a disclaimer that I have not been retained by Jahai's lawyers nor have I received any financial compensation from them or her family from the start I followed Jahai's case with great interest through the news media in December 2013 she clearly fulfilled diagnostic criteria for brain death by early January the media were reporting that multiple bodily systems were deteriorating and that cardiovascular collapse was imminent an inevitable trajectory for a corpse on a ventilator as a neurologist with a special interest in chronic brain death I was not surprised that after being flown to New Jersey where she became statutorily resurrected and was treated as a comatose patient Jahai's condition quickly improved in retrospect the multi-system deterioration attributed to death was actually due to four weeks of no nutrition and untreated thyroid and adrenal insufficiency with tube feedings and hormone replacement she stabilized to the point of being discharged to an apartment where she remains to this day in remarkably good health she has had virtually no intercurrent illnesses her skin integrity has remained excellent she has undergone pubertal development with three documented menstrual periods in 2014 ongoing breast enlargement and all the secondary sexual characteristics implying preservation of some hypothalamic functions despite deficiency of others she has had four hospitalizations three brief ones for minor issues and a recent one lasting a month for error in the bowel wall treated with antibiotics when it became clear in early 2014 that Jahai could have a potentially long survival I approached her family through their lawyer thinking that her case fit perfectly with a series of chronic brain death cases that I had earlier published around the same time her family began to report that she sometimes responded to simple motor commands I shared the general skepticism about these reports assuming that the family was in denial and misinterpreting spinal myoclonus as volitional that's a rapid involuntary twitch generated by the spinal cord they noticed that when Jahai's heart rate was above 80 beats per minute she was more likely to respond as though the heart rate reflected some inner level of arousal the periods of alleged responsiveness occurred around five times per week lasting anywhere from a few minutes to half an hour knowing that no one would believe them the family began to make video recordings during the command response sessions when Jahai's heart rate made them think she was most likely to respond I've been privileged to be entrusted with copies of these recordings 60 in total 48 of which proved suitable for assessing alleged responsiveness they span a total of sorry, they span a two year period and last from 13 seconds to 12 minutes each for a total duration of 97 minutes all have been certified by a forensic video expert as unaltered the first thing that struck me was that the great majority of the alleged responses were not spinal myoclonus or any of the other kinds of spontaneous involuntary movement known to occur in patients with high spinal cord injury most of the alleged responses were simple biphasic movements that were slower than myoclonus some involved more than one body part or were a sequence of movements I surveyed some of Jahai's nurses who unanimously attested that such movements did not occur spontaneously the videos confirmed that movements similar to the alleged responses were indeed rare when not requested and I saw none during several hours of direct personal observation I'll now show you 11 brief representative segments this begins 40 seconds into the original video when Jahai's mother asked her to turn her head after 39 seconds of coaxing her head turns associated with the complex body movement trying come on try harder we just seen that you got to try harder to get what I'm saying that's not good enough show these people that you are not brain dead Jahai show them that you are alive because they try to tell me that you're not alive and you believe that? they try to tell me that you're not living there we go turn that head that's what they're trying to tell me wake up Jahai turning that head you are definitely living turning your head Jahai we seen that and we got that on me in this clip there's a request to move the right hand and 7 seconds later the right arm moves then there's a request to move the left hand and 12 seconds later there's a slight movement of the left arm Jahai's mother asked her to move the left hand harder and a second later it moves harder can you move your hand again? move your hand so we can see it move it harder sorry something that's the wrong one this is the one let's try it again I got the video on you now Jahai go ahead and move your right hand and do it hard where people can see it very good Jahai okay can you move your left hand move your left hand but where people can see it I'm waiting very good can you move it harder? yes alright grub and now they can't say that you can't hear your mother here Jahai is asked to move her hand and 3 seconds later there's a right hand movement she's asked to move it again and 12 seconds later the right hand and arm move again I'm so proud of you Jahai can you move your hand again? move your hand so we can see it move it hard too come on Jahai very good Jahai very good that's very good daughter your hand so in this one she's asked to move her left hand and 4 seconds later there's a left arm movement something got out of order let's get that yes you are good job move that left hand hard for me there we go good job Jahai I see you moving that left hand good job girlie in this video Jahai is asked to give her a thumbs up at 10 seconds there's a myoclonic twitch of the left thumb which doesn't count her aunt persists asking her to put the thumb up 2 seconds later there's a slow non myoclonic movement of the thumb downward her aunt repeats the request emphasizing to put it up 14 seconds later there's a slow non myoclonic movement upward give us a thumbs up Jahai give us a good thumbs up can you try to concentrate there we go I see you moving try to put it up there we go I see you trying honey you just moved your thumb can you put it up I know it takes a lot Jahai I know it takes a lot honey you doing good Jahai you just moved it again put that thing up I see you moving there we go there we go Jahai seemed to follow commands not only to move but also to relax after a request for a thumbs up the thumb moves although not up along with the 2nd and 3rd fingers the fingers and hand remain visibly tense at 31 seconds her aunt tells her to relax and 4 seconds later the hand and fingers dramatically relax can you put your thumb all the way up I see mama very good you trying as long as you trying good job Jahai you did good good job Jahai she's not relaxing relax girlie relax your fingers Jahai good job very good job this video seems to demonstrate a surprising degree of comprehension Jahai's mother asked her several times to move her middle finger but without that term instead she specifies it by circling locutions ignore the quick myoclonic twitches of various fingers including the 3rd finger but focus on the slower non myoclonic flexion movements of the 3rd finger Jahai which finger is the bad finger good job she did it so ignore the quick myoclonic when I get mad at somebody good job which finger is the FU finger Jahai when you want good job let me lift hand up a little bit more so when you get mad at somebody which finger are you supposed to move not that one good job that's not myoclonic here Jahai stepfather asked her to kick her left leg 2 seconds later both legs move the left more prominently than the right he then asked her to kick her right leg and 2 seconds later the right foot moves you'll see it with that black masking over the black pad of the foot but if you look carefully you'll see it Jahai if you up go on and kick your left leg ok ok Jahai kick your right leg here's another leg example with the movement slower than in the previous clip Jahai kick your foot Jahai very good girl very good I see you and one final brief example of course not all movements were as soon after commands as these and some commands were not followed by any movement at all I've spent countless hours studying the 48 videos in detail playing the devil's advocate at every step and I'm convinced that the non myoclonic movements following commands cannot be explained as anything other than genuine responses first of all there are not any types of spontaneous involuntary movement none to occur in spinal cord injury patients the movements at issue were rare during baseline periods and much more frequent during periods of movement sorry during periods of command and coaxing moreover the latency between command and the next movement was much shorter than would be expected by chance finally there was a remarkable anatomical specificity following a command the next movement was of the requested body part much more often than could be explained by chance a devil's advocate would raise a number of objections related to the amateur way the videos were made how do we know what the off-camera body parts were doing how do we know that the family didn't take hundreds more videos and submitted only those that by chance seem to support their claim etc etc I've considered all the potential objections carefully and in the end find the counter arguments more compelling if jahai is intermittently responsive then she does not currently fulfill criteria for brain death the first cardinal requirement of which is unresponsiveness rather she fulfills criteria for the so-called minimally conscious state defined in 2002 by the aspen working group they wrote quote in mcs cognitively mediated behavior occurs inconsistently but is reproducible or sustained long enough to be differentiated from reflexive behavior end quote two years later the lead author geoceno elaborated on the criteria quote diagnostic assessment is particularly challenging in mcs as a hallmark of this condition is behavioral inconsistency patients in mcs may show clear signs of consciousness on one examination and then fail to produce the same behavior during a second examination conducted minutes hours or days later for this reason serial assessment is essential serial assessment is precisely what the videos provide the nomenclature of mcs and other disorders of consciousness may soon change as proposed by this recent article accompanied by an excellent commentary by Jim Burnett I was privileged to examine jahai in her apartment on December 2nd 2014 which unfortunately happened to be one of her unresponsive days she exhibited no brainstem reflexes and did not breathe over the ventilator during or during 20 seconds off it if it hadn't been for the video evidence I could easily have mistaken her for brain dead to shed light on the state of jahai's brain she was transported on September 26th 2014 to Rutgers University hospital for an MRI scan MR angiogram and venogram an electroencephalogram and a multimodal evoked potentials the tests were facilitated by the international brain research foundation and observed by Dr. Kaliksto Machado in this audience who recently published a paper about the MRI and heart rate variability findings that reinforce the evidence for awareness before showing you jahai's MRI scan it is important to provide a context by comparison with 3 cases of chronic brain death that I've studied this is the MRI of the famous TK who became brain dead at age 4 from meningitis and was maintained in that state for over 20 years an MRI scan done 13.9 years into brain death showed no recognizable brain structure the entire intracranial contents have been replaced by a chaotic jumble of tissues, fluids and calcifications here's the MRI of a Japanese boy who became brain dead at age 13 months from presumptive viral sepsis and shock these scans were taken at 4.8 and 5.5 years into brain death there's not even a hint of any brain structure this is the same boy's CT scan after just 1.7 years by which time the liquefaction was already complete this final example is from a teenage girl who became brain dead from a malignant brain tumor by 10 months most of the brain tissue as well as the tumor had liquefied in contrast to the viable tumor remnant that you see growing out through a pre-existing surgical bur hole if Jahae were brain dead we would expect her MRI at 9 months to show a similar pattern of near total destruction but here it is there's astonishing preservation of the superficial internal anatomy and surprisingly little cortical atrophy the scan is binomians normal however with massive demyelination of the white matter an abnormal signal in the cortical ribbon this slide courtesy of Dr. Machado from his paper shows 3D surface reconstructions of the right hemisphere illustrating the remarkable preservation of the gyral pattern there is cystic degeneration in the deep white matter and parts of the corpus callosum this sequence sorry on the left is a mid-sagittal section showing not only the patchy lesions of the corpus callosum but also destruction of the posterior pons and medulla does that arrow show there? yeah the axial sections on the right in which water appears white shows that much of the damage is in the unusual form of a midline slit and degeneration behind it little wonder that jahai exhibits no brainstem reflexes but notice that the upper brainstem here is grossly intact and this is where the reticular activating system begins to ascend to the deep nucleus called the thalamus right here which is also grossly preserved since these are the structures that mediate arousal and alertness is tempting to speculate that it's relative preservation in contrast to the lower brainstem destruction could account for jahai's intermittent awareness despite her severe motor disability and absent brainstem reflexes jahai's mr angiogram and venogram showed no signal related to blood flow within the brain substance there is flow in the supraclinoid segment of the internal carotid arteries here which are of abnormally small caliber the vessels that you see here are in the meninges are on the surface of the brain from the extent of structural preservation one can infer that jahai's cerebral blood flow is not absent but markedly reduced below the threshold of detection of the mr studies moreover there must never have been a time when it was completely absent or else her brain would have undergone total liquefaction like the chronic brain death cases at the time of her radionuclide scan in oakland on December 23rd 2013 cerebral blood flow must have been reduced to below the scan's resolution too low to support synaptic function but just enough to prevent wholesale tissue necrosis this is the range called the ischemic penumbra well known in the stroke field and hypothesized by the brazillian neurologist Cicero Corimbra to occur globally as a mathematical necessity during the progression from normal flow to no flow in the pathogenesis of brain death jahai's case may be the first indirect confirmation of Corimbra's hypothesis how to reconcile the MRI and MRA and MRV we talked about that her neurophysiological test results were not as accurate as the analysis to anything the EEG was isoelectric the brainstem evoked response showed no response including wave 1 for the neurophysiologist somatosensory evoked potential showed no response individual evoked potential showed no response so how to reconcile that with the behavioral evidence of MCS obviously reconciliation is speculative we don't pretend to know the answer and there's no time to go into it so maybe some of you want to ask me about that during the Q&A session importantly brain death is a clinical diagnosis an ancillary test can support clinical evidence for brain death but they cannot trump clinical evidence against brain death so in conclusion since early 2014 jahai has been in an MCS brain structure is much more preserved than expected for chronic brain death and she was probably in global ischemic penumbra at the time of the original diagnosis because global ischemic penumbra can mimic clinical brain death in every way and cause a false positive radionuclide scan finally we do not undergo puberty so with that I'll conclude and thank you for your attention thank you Dr. Schumann those were amazing imageries and much to talk about there I can't begin my remarks without noting that while the mass college of pharmacy was very nice to host the harvard bioethics center it hosted my father when he graduated here in 1948 he loved this place so he died and I'm pretty sure he's dead but he died about a year ago at the age of 98 I believe it had something to do with the red socks winning the world's series I'm amazed that we haven't seen all sorts of disclosure slides up here when people ask me what is bioethics ever accomplished this is something we've accomplished it's a disclosure slide and it actually is something that has no relevance to this talk I don't have any conflicts and you may see me leave to a chair shortly because in my march toward death I have a bum knee and so I've got to go get a knee replacement soon and we'll see how it holds up and I'll just ask for a little help in changing the slides anyway that was just meant to get you on my side as a pity so a court recently rejected a Romanian man's claim that he's alive Konstantin Realu learned in January that he was dead this came as a surprise to him he was working as a cook in Turkey for the past 20 years he returned home to discover that his ex-wife had him officially registered as dead he has been living a legalistic nightmare of trying to prove to authorities that he is in fact alive he faced a major setback in court in the northeastern Romanian city of Vasily when they refused to overturn his death certificate because his request was filed too late the decision the court said was final that must be what Bob was talking about with bright lines I am a living ghost he said in a phone interview with the AP I'm officially dead though I'm alive there he is thank you very much anybody thinks I know what dead is there are clearly different standards in the law than there are in medicine or science there are clearly lines being drawn around sets of data that may or may not be deemed as adequate by some in medicine and science and maybe within the law but it is an area that is relatively murky I want to remind you too as we think about Jahai's case the idea that different places have different criteria for death is very much with us it's not just a question of dead in New York and alive in New Jersey a person officially declared dead in Hungary can be taken into Slovakia and be brought back to life and it has happened I'm told a couple of times there I was considered dead in California and alive in New Jersey with the exception that Michelle told us about and here we see this is just a chart that shows different standards and tests that are used in a selection of nations some want to see just CO2 declining some want to see if you over breathe without the ventilator can you breathe without it don't worry about an apnea test some just use clinical signals and some require more than one physician to do things and others don't there's a lot of variability in how people get declared dead all around the world we might agree and I'll make a suggestion that we kind of agree on what the definition is in terms of what we're looking for the total and irreversible loss of all brain function if you will which maybe Jiay has come back from or seen maintained because levels of brain activity were not measurable for her but in any event that does not get unanimity with respect to the tests that ought to be done or the technology that ought to be used in order to decide whether someone meets the definition and these lines by the way all over the place China for example has never recognized brain death it impacts its organ transplant behavior in ways that are very negative some of you know there's controversy about where Chinese transplant organs may get sourced from but there are many places within the world that basically require tests don't require confirmatory tests or leave it up to the doctor to simply pronounce death and I want to remind you of something else as we think about brain death it isn't really the case that we've got a whole ton of consensus about cardiac death indeed could be argued that brain death for whatever its merits as a definition as a test and as a set of criteria to invoke those tests is far better and more accurate at determining a bright line of death than cardiac death just before I came here I spent a little time at the NYU Bellevue hospital and then our Tisch hospital I noticed a couple of things which will make Michelle nervous one, we seemed to spend a little more time resuscitating white people than black people all were pronounced cardiac death but seemed to me as if we were getting a few more tries and we definitely are trying harder on younger people than very old people that didn't inspire me I'm not going anywhere near that place cardiac death has no real agreed upon criteria whatsoever in terms of how hard you try to prove irreversibility none it has no clear upon definition about how many minutes you should wait to establish that cardiac function has disappeared some places wait five minutes in Canada before organ procurement begins on a cardiac death other places wait longer there isn't any agreed upon time or advice we published about this not too long ago about when you call the code and say we're done varies all over the place depends on where you are, who you are it actually varies a lot according to where you're trained so there's a lot of disparity on that end of the spectrum we tend to be pounding on brain death but of course most people don't die pronounced by brain death they die pronounced by cardiac death so the McMath case if I was trying to look back at the medical autopsy here it did involve an unexpected death in a child accompanied by mistrust, anger and ultimately litigation certainly not anything that anyone expected to happen to the poor young girl once she went in to have this surgery to help her with her apnea but it led to a good deal of distrust I've seen a number of articles saying people just aren't listening to the parents I think Michelle touched on some reasons but they're also just hostility because if you will the hospital was seen as causing your death and getting trust in whatever they had to say from anybody would be very difficult some maintains that she shows that by attentive nursing care brain dead people are not dead that may be I don't think we know as much as Alan has studied some people who have been declared brain dead and kept on machines it is one gigantic research project in a way the ability to come out of pvs and move to minimal consciousness how long would that happen how far do you progress would it ethically even be cruel to try and do what some are suggesting that we try to make more systematic efforts to wake up people from pvs if we move them to what some of you will know as locked in syndrome is that an experiment we'd want to do is that something we've done to jihad I don't know I'm just asking that you know what we infer from her case as a case is a small series but maybe we would like to see what would happen at least in animal studies or in other situations in terms of where people are going should we try to really aggressively intervene with them some forecast that giving a grim prognosis for those who want to maintain a brain person undermines public trust in medicine I do that the worry is that people will get the idea if they learn about jihad or others that everybody who's brain dead even the 98 year old dad of mine is somehow going to roll back and have some areas of the brain intact and show arousal and attentiveness which I doubt very much the New Yorker article that sort of focused in on people being irresponsible like me in forecasting dad things for jihad or others who are brain dead but that people try to maintain I think that's exactly what doctors that I talked to said I actually have no view empirically about what might be happening to a dead body that one tries to maintain with breathing or feeding or hormones or anything else but it's certainly the case that most people who I talked with at New York institutions would say it's pretty likely that it's going to be grim if you try that on the average person declared brain dead now maybe the young as they often do do better than the old and that's entirely possible brain death has always been as Bob Truag knows better than me tricky in younger people and newborns and so on so again sure no doubt she was dead in California both by legal standards and the medical tests that were required she was tested more than most and had outside expertise come in and do it so ladling what she is now in until Alan had a chance to take a look at her gets to be difficult when people are thinking well I don't know if I can trust what the doctors are saying about who is dead so if we wish to revise brain death definitionally should it be possible to maintain cellular or vitalistic life in a body does that require that we alter either the definition that we're using now or the testing and I won't keep you in suspense I'm going to suggest that it requires that we start to think about testing something's going on here at the limits of our measurement now when he commented about the penumbra of electrical activity that was tough to measure and maybe something is under the radar for us we could be doing more fmri's on people who are prospectively brain dead except it would cost us a fortune and most places don't have the technology but maybe we want to insist that if someone demands or could pay for aggressive testing with the latest technology that that is something they ought to be afforded the opportunity to do not sure so from the math case lessons I draw I'm not sure the definition is wrong I am nervous about the ability of our test to detect and implement the definition that concerns me I'm also not sure that we have enough evidence nor will we ever unless we get it out of animals to know what really might happen with dead bodies I am very sure that we have no idea what might happen if we took the average cardiac dead person and tried to intervene with them and maybe we could prolong certain types of activity or resurrected in them that's possible I don't know but here's a company that thinks it's not only possible but they're encouraging people to do it this is looking forward now moving away from the math but just to get us all freaked out here for a second so there's a company called Biocork which happens to be based in one of my old fonts in Philly that wants to see whether by injecting peptide stem cells lasers deep brain stimulators can they reverse death they're advertising this on their websites the possibility that brain death could be reversed was reported this past year in hundreds of articles around the world this is a typical story from the Daily Mail in the UK could we soon reverse death US company to start trials reawakening the dead in Latin America in a few months and this is how they plan to do it Biocork plans to test their theory of this combination of interventions on brain dead patients the method which by the way has not been tested in animals which might be good idea but I don't think the animals can pay the team had proposed doing this last year in India but got shut down by the government although they did get approval apparently from an IRB there so and this is off the website to be declared officially dead in the majority of countries you have to experience complete and irreversible loss of brain function or brain death although this sounds final and absolute I'm sorry this is from a different article a company in the US believes it doesn't have to be Biocork is set up to do repair and reanimation we were reportedly told through the medical establishment this is the president that brain death is irreversible and should be considered the end of the line or is it have we come to the technological point we were able to push the envelope to see if this is truly the case in a certain sense that's what been going on with Jihad not with these kinds of more modernistic interventions but just sort of seeing well what would happen if or what might happen if we maintained someone is there some chance that they are just below the line that Bob was showing us about where brain death is but capable of going on or having even some function in some way return Iron pastor I know him and he is not a fringe player in terms of his scientific background however the company is in Philly its labs are in Tampa and I wanted to show you that some of what the company's own advertising is saying they take a unique approach to mimic the dynamics found during the natural results of disease degeneration and aging that's regenerative medicine and so what they claim to be able to do is to merge knowledge from different disciplines to try and find techniques that will allow the brain to rebound the company offers and this is what I want us to think about a little bit on the website confidential personalized support attuned to the most delicate and complex medical situations that people that they might want to contact them on their website and what it's saying is if you have somebody who's dead call us we'll help you out so the drive to deny death and use medicine and science to reverse it partly new but is certainly being fostered by ambivalence about or doubts about or shedding uncertainty around that bright line of brain death this trial by the way that they're talking about is already on the NIH's clinical trials.gov list which is not a place that necessarily sorts out good science or bad science but it is there and so if you were looking you'd say well that must be a pretty good trial too cardiac death is reversible even five minutes after a person's heart stops beating their brain cells may still function according to a just published study in annals in neurology just came out nine people from around the world had electrical signals in their brain monitored as they died they all suffered from some kind of serious brain injury and they all had DNR orders and the idea was like a battery that loses its charge this loss of polarization may be reversible at least for a while said one of the neuroscientists in the study Jed Harkins at Cincinnati the chemical changes that lead to death begin with depolarization that change begins to countdown and the chemical damage but what he was saying is it looks like perhaps with the right interventions maybe we could get cellular activity to come back that means using different types of electrical stimulation and he believes the intervention may prolong biological activity in the dead but not sure what that means in the cardiac death so we have a couple of interesting developments I didn't talk to you about a third development some of you may know which is to try and freeze the body when it suffers what normally would be a fatal injury repair it and then reanimate the person and that basically is taking someone allowing them to be dead fixing them and then bringing them back to life which is a different angle on the ambiguities of death so what should we be doing should we abandon brain death I'm not sure that again the definition is wrong in terms of saying the brain can't control anything it's irreversible but testing for that I think Jehigh and other cases may make us have to think harder should we mandate efforts at reversing death should everybody get a run at a technology or technique, cardiac or brain death that gives them a chance after a few minutes to reanimate I don't know but I think that issue is coming and I think it's going to come with economic implications and even utter the word transplant in these remarks but that's because I think we better be sure that people are dead before we get involved with procuring organs from them however, maybe the technology is soon to the point where we're going to have to go through a run of that before we decide to pronounce death more than we do do we have to get somebody's permission to be dead or is it still going to be something that professionals do so we haven't really knocked at the door of doctors deciding remember that map I showed you of the world that a lot of places where doctors pronounce you dead and that's their job and patients basically don't play a role in it but maybe it will soon become part of informed consent at least if people say well even if they're dead I would still like to take them home and see what happens maybe possible and who's to pay I think legislation has the answer to this I hate to sometimes point to our distinguished legislators as the place where the people who must resolve this but I don't think we should litigate ourselves out of brain death I think we ought to be having hearings I try to listen to expert opinion and revisit the subject as necessary to see whether the state laws need to be updated or changed that would be okay so I think not only does Chahai raise tough questions about the adequacy of our examinations I guess I want to leave us thinking as we head into the discussion period there are changes coming both in technology to examine the brain that we'll have to decide how aggressively do we want to use those how much money do we want to spend to use those if people think there are ways to reverse damage even after what we now accept as a test for brain death is that something that everybody has a right to try is that something that we're going to have to use to accommodate and work with before we start declaring a death that may have implications for transplant and other domains I don't much care I think I'm a believer in the dead donor rule so I think we got to get death straight before we worry about what does it mean for everything else and lastly what role the patients and families have to play in this New Jersey accommodated degree standard and that's what they chose to do politically and so be it but is that wise to put the acceptance of death in the hands of patients or their families it's tough for families to accept death it's tough I made a joke about my father being dead but it's hard for me to accept that he's 98 years old he's been dead a year they still find it hard to accept it I know he's sneering about this talk and sat in his room so I think he did, maybe it's new, yeah he did so I think we have an issue there about how far do we extend paternalism and professional judgment where does that intersect family values and the ability of people to decide for themselves how they want to deal with the death of a loved one alright we will stop promptly at 7 so we do have a few minutes here and I would ask that you not have long preambles to your statements that they be brief and preferably a question and we're going to and we have so Blair over here Lisa over here with microphones and I'll let I can see somebody back here who is very anxious to do you have a microphone over there Lisa? excuse me Dr. Machado from Havana Cuba I would like to remark that I was called by the International Brain Research Foundation September 2014 and when they commented about the I proposed to do some ancillary test where prescribed by the US licensed physician and I have the result here in the recent publication after I processed the raw data I demonstrated preservation of the intracranial pressure tested by MRI and you can see here moreover using MRI upper and deductions coefficient and compared with normative data we demonstrated a live tissue in Jahae moreover in MRI we demonstrated the preservation of tracts some of them were disrupted but some of them were there regarding EEG the problem of EEG is the electrocardiogram artifact my team has developed a software to eliminate the artifact for the electrocardiogram and then we demonstrated true EEG over 2 microvort per division also quantitative EEG information of the EEG spectrum and also we applied heart rate variability for the test autonomic system and all components generated in the brain stand and upper center autonomic system were preserved but the most striking result was that on the mother boys we demonstrated autonomic response emotional response that is here using the heart rate variability that is in agreement with the video shown by the professor I don't think that she's not brain dead but she's not minimally conscious she rests in some place in the spectrum of consciousness not previously described Do you want to speak at all for that? Yes Thank you Calixto for sharing that information and I hope we will all read Calixto's paper now that it has just come out and thank you for sharing the slides for me to show here Thank you Calixto Whether you call it minimally conscious state or something else I think the terminology is going to be changing soon I do think she fulfills what the Aspen group defined in 2002 as minimally conscious state but the terminology is probably going to change soon Okay, Blair Hi, Mike Nyer Collins from Florida State My question is for all four of you whoever wants to comment but if you could comment on the idea of we have tests that are diagnostic for brain death so the standard criteria of in this Brainstem, Maryflexia, and apnea those tests are supposed to tell us whether an individual is or is not in this particular noceological category that the UDDA defines as irreversible cessation of all functions of the entire brain and we've known for many, many decades that those tests aren't really any good but they're not good because you can meet those tests and still have some hypothalamic function and other things What is interesting is that as time has progressed have become the noceological category so if you test positive by the diagnostic tests you are now considered to be brain dead the problem with that is so long as you follow the procedure it's now logically impossible to have a false positive because being brain dead now just means being declared brain dead so it's impossible to have a false positive which shows there's a problem so I was wondering if you could comment on that and how the McMath case does or does not inform that dialogue. Thank you Well I guess I would just simply agree with you that I think we've recognized for several decades now the gap between what the UDDA says the complete absence of all functions of the entire brain including the brainstem and we know that actually the criteria do not test for all of those things and I think that that gap is something we've known about Jim Bernat has written about why it should or should not matter I think it is one of the points of litigation in the McMath case actually and so as art says this is probably litigation is probably not the right way to work through these scientific problems but it looks like that's the direction it's going I would just add to that you know it's complicated is that it's not as if tests aren't foundable and it's not as if the stakeholders also aren't influenced by their own interests which makes these areas complicated you think about another space where that's that's similar and yet different the NICUs involving babies that are born after hyper stimulation of the ovaries and multiple embryos gestating in the crowding of the womb right so you have now NICUs being some of the most profitable centers of hospitals a lot of this probably experimentation if hospitals didn't intubate respirate and what not if you're poor and you don't have that type of access I mean the difference between individuals who may have spent hundreds of thousands of dollars to achieve pregnancy through assisted reproductive technology where they may have gestated quadruplets sex tuplets which we've seen and the very aggressive care that's provided afterwards and sometimes there is there are babies that are able to live after that sometimes not certainly poor people who gestate sex tuplets where those opportunities are not available and the hospital isn't even thinking about making sure that those babies will get the kind of care that they might get someplace else also exposes this fragile line there's something that was very revealing in the slides one of the slides and videos that you showed and it was the parents saying now they can't say you can't hear your mother how much of this is also about parents and very complicated space in which parents occupy and it's complicated by law and it's complicated by medicine and I don't want to overwrite the point because my colleagues will speak to these issues but I hope that we're able to come back to them tonight or over the course of the next couple of days to think about these nuances and even if the legislature even if courts are not the best places to decide these issues it's complicated our legislature is the best places either let's move on hi Sam, Shemi from Montreal I think that we should we have an obligation to be open to scientific facts that teach us things science is based on observation repetition and reproducibility and I just want to clarify a few things one is Dr. Schumann you relied on your opinions based on videos but you were unable to reproduce those things by direct observation by yourself is that correct that's right she was not in a responsive state when I was there so you could not confirm that they were real based on your clinical evaluation the implication of a patient being able to respond to a command means that she can hear and she can process and she can transmit in order to have a voluntary purposeful motor response how do you reconcile that with a flat EEG absent evoked potentials that include the inability to hear based on electrical testing and the inability to transmit sensory responses through the brainstem thank you I was hoping that somebody would ask me that Bob could you call up the slide at the end of my presentation possibly why don't you start your answer here but Blair can you help me please last slide I I agree that a functional MRI would be fascinating this is our last slide so go back there so regarding flat EEGs Calixto did an EEG at a different time and it was not as isoelectric so the one that was done at Rutgers was interpreted as isoelectric I haven't seen it myself but anyway the EEG samples only the cortex directly under the scalp so there's lots of cortex the EEG doesn't sample EEG does not sample deep nuclei amazingly consciousness can be present in children without cerebral cortex they can interact with the environment in a meaningful way I've published about this of course acquired brain destruction is different from congenital brain absence or partial brain absence nevertheless the EEG per se doesn't necessarily tell you about if there's awareness of the environment and since her responsiveness is intermittent how do we know if her EEG activity might be intermittent also and if Calixto's EEG found activity and Rutgers EEG didn't well maybe that supports the idea of it being intermittent next slide regarding the kind of cheating the frequency of the click stimulus is above the spectrum of the human voice so audiologists consider the brain some auditory evoked response an inadequate test of hearing absence of wave one is common in brain death and doesn't imply anything about the integrity of the downstream nuclei that generate waves in the brainstem evoked response but importantly absence of it can be due to desynchronization of the action potentials and not only to absence of action potentials so there are reports of intact hearing despite absent wave one following acoustic neuroma surgery for example two more somatosensory evoked potential is not surprising given her MRI scan the somatosensory evoked potential is determined mainly by large diameter fibers and the posterior columns which mediate position and vibration sense but it implies nothing about the downstream integrity of somatosensory pathways especially of other modalities and it implies nothing about the integrity of the motor descending pathways or other pathways next and the visual evoked potential of course is not surprising at all that she had no response to that and she's presumably courtically blind that implies nothing about consciousness neither does do the other evoked potentials so this is all speculation of course how to reconcile that with the videos but I find the videos compelling and I don't understand everything about what the tests are telling us but I find the videos more compelling than the tests this is a question for us in the beginning you talk about China never recognizes brain death at the end of your talk you reiterate the concerns about organ procurements would you elaborate more about the potential of users in particular in countries that don't have transparency not at length today it's an issue for a different day but generally speaking if you don't have brain death in a country and you are performing a large number of transplants then you're going to have to rely on living sources some of which may be turned into donors by practices like execution so that's been the charge that floats around with respect to China and some other places as well that's quite a charge right it's quite a charge but put that aside that can be next year's topic what I wanted to say was there's a tendency to say look we can't give up on brain death because we need organs for transplants and that's not my view my view is we have to get death straight and then work around it for transplants the public won't support cutting corners to get people dead to get organs it just doesn't pop up in the polls you don't hear people sort of saying I accept that they're occasionally an article which may appear but the political will to go that direction is nothing so that's where the issue lies here I think is saying do we have to beef up the tests could we beef up the tests is it affordable to beef up the tests is everybody got to be declared dead by putting their head in an FMRI machine boy that would be quite a expenditure and quite a dis well let's put it this way be a useful stock investment in certain scanning technologies so I don't know how we want to go in that area we do accept error rates in testing there people have Michelle I thought was going to go this way people have their breasts removed on tests that turn out to be erroneous in the genetic testing area we learn about mutations we didn't know about 10 years ago when people were taking drastic measures to prevent breast cancer so it may be that that's just an area we live with because we're going to live with a certain degree of uncertainty thank you Lisa this is a question for Dr. Goodwin and Dr. Schumann and it's about if Jaha is somewhere between brain dead and conscious and once we're able to define this will it be considered a win or a loss for the black community in 50 years time oh my gosh it may not be a question you can answer right now towards the end of the conference but I'm curious to see where this leads medicine and race are we going to be talking about this the same way we talk about the Henrietta Lax case or is this going to be considered more of a influential case in moving medicine to understanding all the different aspects and socioeconomic factors that it encompasses because watching their parents talk about how now they can't say I can't hear your mother that one really struck home because my mom's always saying I can't hear and like knowing that she might be somewhere inside still responding in the ways that she's able to I'm wondering if this is going to be a win in eventually or if this will still be a loss of some way well there's also the question of how isolated is this particular case can we use this case as definitional you know one of the things that John Paris said that you know our questions in this domain are not how to treat but whether to treat and whether to treat has great economic implications and that's difficult for us to you know to resolve in our society and as we're talking about death notice that we don't mention because of problems in the past what is life when do we know that life truly is there right and so we can look at the videos and see that the videos are so incredibly compelling and you can feel through what the mother articulates that there's something quite profound in the relationship with her daughter and in that way you know you can almost hear sojourner truth right and ain't a woman right like still this articulation of can you hear me but is this case a one off and what does victory mean victory in this case have some relation to do with race the fact that resources would be expended over time for this one case for a young woman who may never have greater functionality than what it is that we see in this video and it makes me wonder about questions such as is life the ability to enjoy is life the ability to experience happiness is life the ability to experience some form of pleasure it clearly we have there is life that we can see and it's life that's being supported by respiration and intubation but I think that there are harder social questions for us to think about I don't know if 50 years from now we can think about Jahae's case and actually say that it's victory or that it is no victory I think that there are some who experience right now I think her mother would say that she is victorious she got her daughter out of California where in California her daughter was considered dead she has her daughter now in New Jersey and I think she would not be alone because there are others who are in New Jersey there's a reason why New Jersey has this particular law and I think that there are those in New Jersey are very happy that this law exists I have not heard cases from New Jersey though where situations such as Jahae's have been reversed in the ways in which people typically would associate with coming back or having a kind of healthy life and that's complicated and I think we should see it as complicated and I hope over the next couple of days we can really unpack how difficult that is to answer that question one final quick question here well I'm sorry we're in the back hang on a second thank you all so much I have a question for Dr. Trude and Dr. Schumann Dr. Trude in the beginning you mentioned that there is a possibility that Dr. Schumann's data might suggest that Jahae recovered partially from a state below where the current line is drawn at brain death and that might mean that there is a potential return from that state of brain death but Dr. Schumann you mentioned that there is no point at which her cerebral circulation could have been completely cut off because that would have led to inevitable decay so I'm wondering to what extent do you think that this is a possibility of returning from a state of brain death versus the limitations in our current diagnostic tools for determining circulation and electrical function so I'll hold my comments Alan do you want to comment on that yeah I would like to respectfully take issue with your slide that shows the bright line and the part below because across from the bright line you wrote irreversible apneic unresponsiveness as brain death but the UDDA doesn't define it that way the UDDA defines it as irreversible loss of all brain functions so the only way that you can be sure that the loss of brain functions is irreversible is if you're at the bottom of your slide there's total liquefaction of the brain which is like the MRI scans and CT scans of the chronic brain death cases I showed you before JAHEI's MRI scan so that is brain death and that's why it's irreversible so we're going to have to take this conversation offline because the neuropathology of brain death though has not been consistent with extreme necrosis or liquefied brain so the diagnostic criteria don't comport with the UDDA definition you can see how we just love this topic please come up to the stage afterwards and ask your question because I promised I was going to end at 7 okay so we're going to stop here if you have further comments or questions please come up I hope to see you tomorrow morning just one second oh we have a reception yes we are we have a reception upstairs