 From children's Marcy in Kansas City a great panel Bob question for you if For some reason the New York Times lost arts phone number and called you and said oh What are you actually proposing to replace the current? dead donor brain death DCD Criteria for who should be allowed to donate and tell us in a sound bite Portion is hard, but I'm not sure that good ethics necessarily always has to reduce to a good sound bite You know, I think that what Frank and I proposed in our book was that if there are Patients who are going to have like support withdrawn who are expected to die and have to be very careful about how we develop those criteria That they should be allowed to donate that that would happen with anesthesia because we wouldn't want them to experience any pain and That we believe that with their consent indeed at their request That that would be an ethical choice and it would be a more straightforward and honest approach than what we're doing now Which is to put them through an orchestrated depth Which does which limits the number of organs that could that can be procured reduces the quality of those organs Which is really not what the donor had in mind when they said they wanted to be an organ Thank you dead Dan soul Macy here at the University of Chicago come thanks to all of the panelists help particularly thank Thank thank Bob for a talk in which after congratulating Jim in the first maybe minute of your talk you managed to say Almost nothing I could agree with for the next 29 29 minutes particularly about assisted suicide rule of double effect Distinction between killing and allowing to die etc But but a lot of that I think was off of the the central target of the question I want to bring you back into conversation With now Jim about this permanent Verses irreversible distinction and I think you called it a category mistake, and I'm wondering whether it's a Not a category mistake to categorize it that way because I think it's more about the logic of implication Of certain states, and I guess the question is that you're raising is whether if an event has occurred that could potentially be Reversed and no one intervenes to reverse it We've made a decision not to reverse it that that somehow changes its status to not being permanent And I'll give an example totally outside of this if I'm running a race And I decide in the middle of it. I I can't do this anymore, and I stop I think I've lost the race at that point and the fact that I could start again Doesn't seem to change that nor the fact that it's you know potentially possible That it hasn't been ruled out. Absolutely that I could win Changes the fact that I have lost the race So do you disagree with that as because I think that's sort of at the heart of the you know permanent versus Irreversible distinction Being at the heart of it, I mean I see what Jim is saying and if I'm reading him correctly He's saying that permanent is a perfect proxy or irreversible that once we know something this is what it says Well, if not, then I'm giving you I'm giving we could ask friendly friendly amendments Jim was that what you meant? well the The idea of permanent irreversible. It isn't only that it's a proxy. It's that it is the medical standard of care and that as a matter of Medical practice That's why I wanted to make the distinction earlier between if you will an ontological approach Compared to a medical standard approach that we are allowed to do it at that point and that that's what I see as Relevant yes from a practical perspective It is it is a proxy and a lot of the other things we do also are that way We are beginning to think now about death determination in the uncontrolled donor after Failed cardiopulmonary resuscitation and there's a choice that has to go on there, too and that's the choice of stopping an ongoing CPR effort and that there are some criteria that have been proposed for that But we know that in practice it's done all different ways and that we also know that the recent paper Published in the Lancet online in September of this year showed that Longer cardiopulmonary resuscitations led to better outcomes suggesting that some of the patients might have survived and Also went home earlier. So some of the survivals were probably okay neurologically And but a choice is made just like the choice not to intervene and resuscitate Making it a contingent event. There's also a choice that goes on with When to end resuscitation there's also a choice that goes on in terms of physicians Agreeing to allow cessation of life-sustaining therapy. So many of these Deaths that we would like to have firm endpoints on that seem Totally biological and that we are not somehow involved in or complicit in that's not that simple You're saying that That's a reason why we can't go to them dead quickly in DCD I just want to I think this really ignores context if I've been with a hospital ward And I see somebody and I listen to their heart and it's stopped and I declare them dead I don't know yet whether it's reversible or not, but what are the consequences of my uncertainty? not The child is there until the nurse gets around and coming over and Packs, you know him or her up and they go to the board the consequence is nothing When we do this in the context of DCD donation and we say that at two minutes your dad The skin the knife comes down on the skin I mean to say that we can make the analogy from one to the other and just ignore the huge difference in context Doesn't make any sense to me gentlemen Now I'm not familiar with it The more general question you're asking and and I think this is a good panel to ask that question of is How permanent and how irreversible is the diagnosis of brain death? Are there ever mistakes are there ever people who have been shown to come back from such a diagnosis? I guess that's behind your question. Well, it is because actually I was My husband was in the ICU and there was a young woman who was 29 had a two-year-old child and she in effect was declared brain dead and The hospitals are the all of the ICU because I was often in the waiting room where some of these consultations were taking taking place they wanted the family to remove all life support and The parents and the family just couldn't quite do it then well two days later. I was there when it happened She woke up and she lived for a couple of days And then she did have some massive strokes But she was obviously not brain dead even though because she she was able to communicate with the family and respond to doctors and do So those are you know that was a very personal experience, but well, they're obviously cases of Erroneous diagnosis, and I think that sounds like was the case here there have been two well reported cases of Fulfilling the clinical criteria for brain death Following rewarming after therapeutic hypothermia protocols to limit brain damage after cardiac arrest where they did Recover somewhat and those I think count as true cases of Erroneous diagnosis, but fulfilled the diagnostic criteria and what that has shown us is that There's something about the hypothermia protocols in cardiac arrest that should make us wait longer After rewarming before declaring brain dead, but that would be the only exception More commonly the term is either used improperly or the testing is done improperly to account for cases like you're described September hi, I'm September Williams of former McLean fellow, and I am Speaking of the Winnipeg protocol for frozen people Coming back when I was in Winnipeg and school in 1972. I had the opportunity to pass out leaflets in front of a demonstration Where Crispinard was speaking and I handed him a leaflet He looked me straight in the eye in 1972 and said thank you. I mentioned this and this is directed to dr. Kaplan because I Believe he had never been handed a leaflet before When you talk about the difference between constructive engagement the relationship between a part-head at that time and what's happening in China and the use of human research subjects without their consent was Was quite parallel as it has been throughout history with African-Americans and Native Americans in this country historically the question is is do you use sanctions Or do you use constructive engagement or do you use targeted construction constructive engagement? Crispinard was a perfect person to tap his inner humanity and Say you're on the wrong side man Come over here. Okay. You want to do transplant, but you got to get on the right side So do you have in the rubric? A targeted constructive engagement for this question and there has been some discussion among people who have sort of rallied to be in opposition Within that group you see the whole rage you see the sort of no contact no Interaction on any front with China until they stop the barbaric practice Then you see more where I am which is boycott particularly transplant related Scientific and medical activities, but try to constructively engage with people of goodwill in China or who can Influence people of goodwill in China to keep moving So mine is the tactical or focused We're not going to let you report at the meetings on liver transplant outcomes, but we're still going to be talking and Maybe other medical meetings you can come to and talk about other things. We're not it's not a complete ban I I don't think anybody empirically knows What's the correct strategy to follow in trying to change a nation-states policy about a Evil practice, but I'm sure that part of it in the case of China is to keep the PR focus there They they don't like being called out. I can tell you this week The Israeli Parliament who knew picked up on this boycott idea and about ten of them wrote a letter to the Chinese government Saying you should stop the practice Chinese government has gone crazy He's now asking the Israeli government to censor the ten Nesset Parliament members I like that. I mean, that's good. You know, that's a lot of PR, but it's an example of what they don't Want they don't want to be seen as pariahs Do you want to be seen as a modern state coming in to join their fellows at the table of science and technology? So To me it's it's both Carrot and stick I still think that's the Transplant surgeons in China that would be willing to put their lives on the line that you know Careers may Look for them. I think we'll take we'll take three more questions I'm gonna ask the final three Questioners to be fairly brief in the question Jeff gosset Lurie children's in Chicago I'm a transplant pediatric transplant cardiologist, but not an ethicist One thing I would say that struck me from these conversations is that one will always be able to find an example Where our rules did not work the child who the patient who woke up the example of an erroneous diagnosis of brain death And that list obviously could go on Including the child who was taken to the to the OR and brought back to the family despite their wishes otherwise If you would postulate that there's always an example where this is wrong Then we simply shouldn't be in this practice period taking your arguments to the extreme. Obviously, I don't agree with that and so the question becomes at what point do we find a Reality of what we do that a discussion with the family has a right to Accept that that family should have been allowed to donate we allow our patients families to not accept donation We had a baby whose parents clearly Express understanding did not want to transplant and the baby died we allowed that to happen Why shouldn't we allow the parents who whose child goes to the OR to be allowed to have to be a donate to be a donor? I think we place artificial barriers without By setting these rules the question is where we set them and why we as a society Place these when you obviously both spent a lot of time thinking about this and have very different views Not the legal question. I think is different than the medical care question I'm not really I kept sitting down because I'm not sure I'm phrasing this as a question Just two comments one not directly in what you were talking about in terms of Peds But just the anecdote issue a couple of years ago now just at this time of year. There was a story about a man in Belgium Who? Rahm Eubon was his name who allegedly had been in a permanent vegetative state for 17 years and then woke up and began to write a book I Looked into that case because it seemed to me unlikely Although I guess the newsweek thing maybe not so but in any event the point isn't so and in fact It wasn't true. He had been writing a book with facilitated communication and the people helping him write the book with the authors and he Had not written a book people had hoped But I don't know the newsweek book. I do know the Eubon story and I do know that Sanjay Gupta the estimable doctor of television Wrote a book two years ago in which he talked a lot about people waking up and miraculous Recovery's and we can never be sure who's really dead the culture Has a very strong interest in finding out that hope always goes on so even though these anecdotes are rare They really come flying out and it relates to something that we're all concerned about which is Implications in one area of practice for the rest of practice I know firsthand from listening to some ethics Consults that people will say I read Gupta's book and there's always a chance that despite you're saying he's brain dead Which is in PBS, but that's what they heard that he's gonna wake up or he could wake up So we must continue. I don't know how to handle the sociology of all of that but it's there and I think our culture wants to drive toward a Kind of belief in resurrection of a sort that might be religious or who knows but it's in the culture It means that we have to attend to that Consistency requirement and be alert to debunking the anecdote when it comes out and it's not so other quicker comment I whispered to Bob up here, you know I got into this debate really in a strange way early because I came out in favor of trying to have anencephalic infants as donors and it got Crucified as an idea AMA everybody and his brother came out and opposed the suggestions not far from where Bob was is Trying to go. I was trying to say the category is distinct Maybe we could have two rule sets of rules one for everybody and one for anencephalics And then we won't worry about a slippery slope But the public reaction to the anencephalic Donation with parents wanting to do it and feeling it was the only thing that would redeem this terrible thing that had happened to them And so on it was really really negative It's just that we may sell the dead donor rule Ourselves and have convinced the public that they better stand by that rule in a way that we don't understand But I you know looking back at that experience Is the dead donor rule really matter it sure did in that one? You know despite parents were willing and no harm to the infant and all the rest of it That policy went nowhere Except Cal Stiller in Canada yeah Cal Stiller did a few but then even Peter doves. That's right. Yeah Tracy Tracy Cougler University of Chicago I'm a PICU doctor. I Declare brain death, and I've done DCD. I really wonder I Agree That neither death is perfect And I also have a talk of are they dead yet? but But I think that families When the heart has stopped to see the patient is dead And I think declaring death in the PICU is a better place to do it than declaring death In the OR after the organs have been taken. I will tell you since I think I've done all of the DCD donors at this institution and pediatrics I Hate clearing those kids dead And I'm a hundred percent in favor of it and I hate doing it they're the hardest kids I have to declare dead and I feel like that if we go to taking the organs while They are more alive than DCD that We're just turning it over to our transplant surgeons, and I think that becomes a much bigger conflict None of what you've heard up here shows up when I'm in the intensive care unit. I told them how to complete Okay, I make the diagnosis of brain death and I use the right language I mean it's not fair for me to come into that environment and Bring a different vision. Although I do feel that there's a lot of indications that we're moving in that direction and you know, I don't know how to Address what feels most comfortable for us and everything else I mean I found different parents have different views and I think it's hard to generalize