So, when I was first given this topic, my first thought was, new tools? What are the new tools? Are there new tools out there that I didn't know about? Again, just some information about me. So, what I would hope you would get from this session is having an understanding for the need for those that are conducting the brain death exams to be well-trained, to have ongoing training in this area. The other thing is the professional community needs to advocate for our hospitals to uphold the AAN guidelines and not pick and choose those guidelines. And we need a lot of public education, just like we do for stroke and cardiac. I have no disclosures. So, just to go over some history, the Determination of Brain Death Act, I think it was 1981, basically defined a national definition of brain death because we needed that. However, they left it up to each state to further define it. And we'll talk about some of the problems with that. But they define it as an irreversible cessation of all functions of the entire brain, including the brainstem. It must be made with accepted medical standards and an irreversible cessation of circulatory and respiratory functions. So, we have a number of standards. The current standards are, in the adult community, the 2010 American Academy of Neurology medical standards for brain death and death by neurological criteria. And for the pediatric community, the current ones are from 2011, which was a joint effort by SCCM, American Academy of Pediatrics, and the Child Neurology Society. Now, the last one, the 2020 World Brain Death Project, was more of a consensus statement that it was being offered for different medical societies around the world and countries to develop their own standards based on their own cultures and their resources. So we all know, before conducting a brain death exam, you need an established diagnosis that can lead to complete and irreversible loss of all brain function. We need to look at conditions that may confound the clinical exam. It needs to demonstrate the coma, brainstem, areflexia, and apnea occur. Temperature needs to be at or above 36 degrees centigrade. And they need to be normotensive. Ancillary testing. So if you look on this, the gold standard, if you were to do ancillary testing, but the brain death exam is a clinical exam. You don't necessarily need any sort of testing. And I think that is poorly understood. So you have your angiogram, which is recommended by both the consensus statement and both the adult and the pediatric community. The radionuclide cerebral blood flow scan, both, all three as well. And transcranial Dopplers, but this is only in the adult and in the consensus statement. The other things, the other EEG evoked potential, CTA, MRA, they're really not recommending. So the history, the concept was first noted by the French in Molart and Goulon in 1959. Then came the Harvard brain death criteria in 68. As I said, the UDDA was in 81. The first brain death criteria was actually in the pediatric community in 87. And then adults in 95. And then the adult brain death criteria were updated in 2010. I think they're about to be updated again. And in 2011, the pediatric guidelines were updated. And again, the consensus statement in 2020. So I said before that we have this national definition of brain death, but they left it up to the states to interpret it. So that's led to a lot of problems. New York and California, reasonable accommodation for religious or moral objections. Illinois, take religious beliefs into consideration. So that can be interpreted a lot of different ways, right? And New Jersey, the state that I live in, is the only state that allows for exemption of death by neurologic criteria if it violates a person's religious freedom. And then death is determined using CP criteria. So there was a famous case of a 13-year-old that had complications of surgery, was declared to be brain dead. The family fought it, didn't believe it, found a hospital in New Jersey that accepted the child for the purpose of doing a trach and a peg. The family took the patient to that hospital, ended up being a 231-day hospital stay because when it came time to go home, they gave a lot of pushback. And eventually went home and died, I think it was four years later. But I mean, this patient was dead in the state of California, but not dead in the state of New Jersey. So there's clearly work to be done here. Now because of all of this, the AAN, the American Neurological Association, and the Child Neurology Society decided to have this summit to look at these issues. And they determined that the guidelines are good guidelines, there are no changes needed there. But institutional policies are deviating from the guidelines. So that's work to be done. Who are the examiners that are determining brain death? So there's work to be done there. And they felt the public trust might be compromised by the difference in the guidelines between pediatrics and adults. So why do people not accept this? I can tell you I have a close friend whose husband recently died of cardiopulmonary arrest in Germany. And she did CPR, got him back. And you know, I mean, she's a non-medical person, but it sounded like he was pretty much brain dead in Germany. And she said they want to take him off life support, I just want him to die naturally. So to her, cardiopulmonary cessation was natural, but not the fact that he was brain dead. And this all happened as I was preparing these slides, so I was kind of living this horror. But anyway, there's distrust, there's misunderstanding, there's hope that they're going to regain neurologic function. I mean, they see things on the internet. There's grief, there's guilt. A lot of times if it's a dysfunctional family, and we've all seen that, they feel guilty that they're going to take them off. There's a desire to receive Social Security. I saw that in some of the literature, and I've seen it. So I mean, as horrible as it is, there's religious and moral beliefs. And then things like this 13-year-old that was transferred from one state to another, people hear about that, and so they're not sure that they're really dead. And of course, all the stories of recovery from brain death. So there was this great study that I saw that looked at 508 hospital systems, only 492 responded, and what their guidelines are. And what we found is they're all over the place. And that was really a surprise for me. I've worked at major university hospitals, and I've found with the neurointensivists I work with, they follow the guidelines. Now honestly, I don't know what the guidelines of the hospital were, but I would assume they were the AAN guidelines. But after reading this article, it doesn't look like it. So who's performing the exam? What are the prerequisites of testing? Details of the clinical exam, details of apnea testing, and details of ancillary testing. So I mean, you can see all this, and you'll have the slides, but just to point out a couple of things, 478, why would you not require apnea testing? I mean, that's insane to me. So you see that we are not following the guidelines. I mean, and this was 492 hospital systems across the United States. What did I? I'm not seeing it now. Okay, so who's performing the exam? Only 163 out of those 492 clinicians had expertise in neurology or neurosurgery. So that was kind of shocking to me too. And 212 were attending physicians. Well, it's very nice that the attending physician would come in and declare somebody brain dead, and you know, the family probably has a relationship with them, but is that the person we want doing it? How often are they doing it? Are they really skilled to do that? And requiring a number of exams, I mean, the guidelines only call for one exam. The other interesting thing in terms of the prerequisites, only 181 of those systems required them to have a temperature of greater than 36 degrees centigrade, and 276 required absence of hypotensive, being normotensive. So that's kind of shocking too. Ancillary testing, we're all over the place with that. Ancillary testing, I mean, a lot of hospital systems are requiring ancillary tests that aren't recommended. So we have a lot of work to do here. There was a similar study of variability of brain death protocols in Europe. They looked at, I think they looked at 33 European countries and Turkey and Russia. I don't know how Turkey and Russia got thrown into it. And again, they looked at prerequisites for brain death, clinical tests, who the clinicians are, the number of clinical exams required. And basically, so they had 28 respondees. So we have 28 out of 33. And they were pretty good with some things. I mean, 20 all of them excluded therapeutic concentrations of drugs, 18 required them to be normotensive. I mean, that's, again, is sort of consistent with the US. 28 required them to be unresponsive, no motor responses. But again, a lot of variability. A lot of them requiring more than one exam, up to three exams, how many physicians, ancillary tests all over the place. So lots and lots of variability. This study was fascinating. This was an investigation of public perception using the internet. It's fascinating and horrifying. We know that people get information from the internet. So this was a qualitative study, perspective cross-sectional, looking at Google and YouTube videos. They used brain death and brain dead. Inaccuracies were found in four of the 10 Google and six of the 10 YouTube. There were a lot of kind of horrifying commentaries on this. Now in the Google, seven out of the 10 were written for the public, three out of the 10 for the professional audience, but there was a lot of inaccuracies. YouTube videos, 80% of the videos were professional and they ranged from 38 seconds to 18 minutes. If you read this article, I mean, it was really horrifying what some of the, it had people waking up and they were in a coma for a year and look, they woke up. And if you look at some of these commentaries, was he actually dead though? The beep machine was on and he still had tubes. These disgusting doctors, they won't even give people a chance to fight for their life. Doctors are like vultures on people in coma for their organs. There was a lot of confusion between organ donation and brain death and that we are declaring people brain dead so we can steal their organs. So what is the solutions? I mean, I'm preaching to the choir here, clear, concise, consistent messages by all members of the team. And I can say the same thing that someone else is saying, but because I use different words and people are looking for hope, they're going to hear it differently. We need to require brain death testing. The clinicians that are performing the exams need to be skilled at it. It should be built into the recredentialing process. And maybe, maybe we need to have oversight with joint commission or something like that, some regulatory body to make sure that these hospital systems are using the appropriately trained people and that training is ongoing. We need public education. I mean, clearly there is a disconnect. And how do we get there? I mean, that's a big job. We need to advocate for hospitals to support the AAN guidelines and not pick and choose which guidelines they're going to use. And clearly from that U.S. study, you can see that's what's going on. And we need to advocate for a consistent legal approach for all of the states to be on the same page so that you can't be dead in California and alive in New Jersey. And of course, we need to educate our families and work them through the process when we see things are not going in a good way. Thank you for your time.

brain death exams

standardized practices

misinformation

healthcare professionals

established guidelines