 in permanent vegetative states and the ethical implications of resuscitation procedures. Professor Parris previously served on the Board of Directors for the American Society of Law, Medicine and Ethics Committee as well as the National Hospice Organization and the Society of Critical Care Medicine. Today Professor Parris will be giving a talk titled Approaches to Resolving Intractable Disputes Between Physicians and Families Proposed and Practical Options. Please welcome me and welcome Professor John Parris and I also want to extend the invitation you should come back and visit our hallways. It would come for about three months and just walk around the ICUs and we would have more ethics consults than we could handle. Please come back, Professor Parris. I feel as if I came when Mark arrived. I want to begin though by saying today is the anniversary, the first anniversary of a very important article published by John Lantos exactly one year ago today on this topic, ethical decision making, ethical aspects of decision making in the neonatal intensive care unit. I recommend it as simply the best thing I've read on the whole topic. And John bravely takes up the issue that George Annis whom no one ever thought would be a shy retiring type said in 2004 the issue that John writes about is the one that has never been resolved namely what do we do about parental decision making that goes contrary to medical advice. That problem has not been solved. It began with Hippocrates. He thought he solved it. Back when he said what do you tell the patient? Tell the patient nothing. Why not? Because he and was always a he might not take your advice. But the better example was your advice if it's then he also goes on to say do not treat the patient who's overmastered by his disease. Why not? Because he'll die and then they'll say you were an idiot. It's bad business practice to do these things when you're going to lose anyhow. But the issues have gone on from Hippocrates. Hippocrates came up with the idea though that and it's prevalent in most of the world as John just told us. The doctor knows best. Let him or her make the decision and that's the best we can do. I recall teaching some students. I had a Syrian physician in the class and there was a woman saying well it's my body, my decision and he looks at her and he says are you stupid? I said why do you see there's a cultural difference here? And we're not going to solve it with rational analysis. And fairly much Hippocrates theory that leave it to the doctor prevailed right up through the 1950s. I recall the first time that I went into the ICUs probably here back in the 70s and when we faced a dying patient we just skipped over that patient. Left him or her isolated feeling lonely and unwanted and unimportant. In fact they would be better off as if they were already dead. That ended when Elizabeth Kubler-Ross, this is the 50th anniversary of her death and dying book and it's her great contribution to bioethics was not the stages of dying. Those were criticized roundly and severely. But she also had one important point. Listen to the patient, even the dying patient. Take the patient's values and make them known. Make them important because that's what's important to that patient. That's been the great contribution that she made to bioethics and it pretty much prevails to this day as to how we approach bioethics in the United States. Now it's gone too far. There were people like Bob Beach who would be writing about autonomy. And I wrote an article one time and he was giving a talk and he says, I see on the program there's gonna be a talk here on autonomy runner muck, the far reach of each. I said, come to the talk and learn what it's about. He said, I never said that. That's all fake news. I said, come, but I noticed he didn't show up. But you had people that autonomy became, and probably the worst example, the greatest example of that would be baby K, a child born with encephaly, meaning there was no brain. I recall one time meeting a judge, a chief justice of a Supreme Court of one state that'll go unnamed. And I said to him, now the old test of this was, and single you look old enough to know what the old test was. You took a flashlight, you put it here, and when the beam came out there, what did you know? And I stood in front of this judge and I said, what did you know? Well, he hesitated and hesitated, and I saw my opportunity. I said, you know you've got a judge. No biases, no preconceptions, no nothing, perfect. And they said, my, this is not going to be what we thought it was going to be. From Kubler-Ross, we got the idea that it should really be autonomy. The decision should be the parent, should be the patients. True, then you get into the issue of the NICU, when the patient obviously can't make the decision. And Duff and Campbell, in a famous article, 1973, on moral and ethical dilemmas in the newborn nursery, said, we have 14% of the cases here at Yale, New Haven, die because of a decision to withhold or withdraw treatment. And then they said, who should make that decision? It certainly ought not be the doctor, it can't be the patient, it should be the parents. And then they held that. So here you had one option, it's how we do these all, they simply do whatever the parents want. That seems to be what happens in India. And except in the United States, it was being done in hospitals, and McCormick criticized Duff and Campbell saying, there's a problem with that. There's no standards, there's no norms, there's no guidelines. There's simply the will of the family. And the will of the family could be in the interest of the child or it could be family considerations. And Dick McCormick, who wrote, I think, in a little article in Gemma in 1974 called, to save or let die, what was probably the most insightful essay I've ever seen on these issues. And he said, what you're really looking for is, what is the relationships? What is it? He asked of it, published it in a medical journal, but it was... He was. And he used to spend most of his time talking with Mark Sigler, trying to persuade Sigler that the Catholic insights were better than his. And he was probably right. Sigler would confess to that later, years later. In fact, if you ask, how did I meet Sigler, it was on the debate circuit. Debating, it was draw a lot of official tuition and fluid. And Mark had written an article in the Annals of Internal Medicine called, Against the Emerging Stream. You think I've forgotten these things. And we debated that before the American Medical Association in New Orleans. And Mark's saying, oh no, this is against the emerging stream. I said, Mark, it's against the stream that began in the 19th century. You ought to think back centuries. You should be a Catholic and go back 500 years and see how these aren't new questions. These are, in fact, that began, that question began with Basil in the fifth century, the fourth century, rather. And Cormac would make those kinds of corrections. And so you had, the doctor knows best, you have leave it to the patient, you have the parents will do it. Then we had the great futility arguments in the 1980s and 1990s. And they all collapsed when Sigler, Lantos and, what's his name, Helft, wrote the article, rise and fall of futility movement and said, there's a big problem with using futility. Namely, there's no discussion. The words are conclusory. It's the purpose of futility was to end discussions, not to begin a discussion, not to learn what values and insights were there. And fairly much, that article in 2000 was the end of that. I remember Schneiderman writing to me saying, how could you possibly write, futility is a flawed concept. You were one of the people who started it. I said, but I've learned from the era of my ways. I've learned from the great master, Sigler himself and Lantos and Helft, was it Paul, Paul Helft? Yeah. We learned from them and you say, you can go. So futility ended and where do we go now? Well, part of it is the American way of resolving all these problems is go to court. That is probably the least best way you can go because the judges will all say to you, what do I know about that? I can't even spell the word in cephaly and you, or as I met the Chief Justice of the Supreme Court of California one time, we were talking about new forms of reproduction. He said, I don't even know what you're talking about when you're talking about fetal ovary transplants. Does that mean we can have babies? You look at him and say, judge, I don't think you know the birds from the bees. So we bring these questions to people who say, I don't know anything about this. Why are you asking me? But that's what we tend to do. And it tends to be a widespread phenomenon. And we saw this in the United Kingdom with two big cases that came last year, Charlie Guard and Alfie Evans. And these were cases where the parents wanted to have an experimental treatment done in the United States and they'd raised the Evans case, the Charlie Guard case, they'd raised a million and a half dollars and thought that that meant they could just go. Well, the physicians at Great Ormond Street raised the question before the court. And the British system is very clear. If any party, the doctor or the family raised the question and it goes to court, the court alone will decide what is the best interest of the patient. This came about from a case that happened years ago, the Hillsborough soccer case, the Tony Blan case. He was in a persistent vegetative state and the family wanted to withdraw the artificial Christian fluids. And the doctors had read Siegler that you can't do this and said, oh no, this would... What's that? It changed my mind. You have a mind and it changed. I can recall Siegler one time saying, I've changed my mind, I've changed my mind. No, no, no, I'm with you, I agree with you. I hate to say it, he says. But the British courts, in those days, England didn't have a Supreme Court until 2009. Hard to believe. They took the cases to the House of Lords until the law lords said, there's a problem here. We both write the law and we interpret the law. There should be an independent Supreme Court and now there is and it has 12 members and the only 11 will meet so they don't have a tie. And the British law lords ruled that against my advice and I told the British Medical Society not to do this, that these cases are of such import that any case involving the withdrawal of a life-sustaining treatment must be decided by a court. Now the British courts are better situated than American courts. All the important cases go to the so-called High Court and these are judges appointed for life from among the highest ranking lawyers in the country. They were recommended to the Queen and there were royal appointments and they hold them till age 75, actually. But that's as good as life. And then they all become lords. And the American system is vastly different. Here we have 50 different state legislatures and each legislature can independently do whatever it wants. We also have 50 independent state Supreme Courts and they tend to contradict each other and the worst example of this was the Shiavo case in which the decision as to whether or not to withdraw a life-sustaining treatment from this patient in a persistent legislative state and there was a dispute between the husband and the parents. The parents insisted that she wasn't in a persistent legislative state. The husband said the medical evidence is that she is. The Florida courts found the medical evidence was that she was. The autopsy established that that was true. But that case went first to the trial court in Florida, then to the Supreme Court of Florida, then to the Florida legislature and the Florida legislature did something that was very interesting. They said in a case in which there's a well-defined persistent legislative state and there's a dispute in the family as to what should be done. The governor of the state of Florida, Jeb Bush should decide. Oh my God, says Mark, that's right. Slow Jeb, we got to do it. And the Supreme Court of Florida said, this is unconstitutional. Then that wasn't the end of it. Then it went to the United States Congress and the Congress voted that the federal courts should inspect to be certain that what the Florida courts did was correct. So it went to the federal district court, then it was supposed to go to the, then it went to several federal courts of appeal and four times it went to the US Supreme Court. It involved the governor of Florida, involved the president of the United States, George Bush came back from Texas to sign the law. And you say, do we really want to have the governor of the state deciding whether or not there should be a withdrawal of treatment from a patient? That's, what's this got to do with it? So the Americans have a very divided legal system. We've got 50 independent states, each with its own legislature, each with its own Supreme Court and they frequently contradict each other as to what should be done. New Jersey and Quinlan decided that yes, this decision should be made and should be made by those who best represent the patient, namely the family. Massachusetts came along and said, oh, that's a terrible idea. In the sequence case and said, only the court can make this decision. And along comes New York in the story case and said, such decision should never be made unless there's clear and convincing evidence from the patient when the patient was competent that he or she didn't want the treatment. Well, who's not protected under that? All infants, what infant has ever signed an advanced directive that says he or she wouldn't want to be maintained this way. And we know there are lots of babies who probably ought not be treated. And as the phallics, for example, and you say, what kind of a rule is it when you say it must be done only with the consent of the competent patient? And you can see what they're trying to do is trying to protect competent patients. But in the meantime, large numbers of people are left unaddressed. Namely, how many of you have signed an advanced directive? Susan Toll, put your hand up. Yeah, not all. And this is a sophisticated audience. If you were in the state of New York, what protections would you have? Where's the clear and convincing evidence of what you would want? I used to say, be very careful if you go into the Big Apple. Have your post program written out and your advanced directive clearly signed and your healthcare proxy named, otherwise you're at risk. At risk of significant medical treatment that you don't want, that's not helpful, and go. Finally, in the end, John Lantos writes that the best way to solve these problems is with shared decision-making with the family and the physician. Spend time with the family, learn what their needs are, learn what their goals, what their values are and try to work out a compromise. He's probably on point. That's the better way to do it. It's better than the doctor saying, I unilaterally write this order or the parent saying, we don't agree with the husband and let's go to court and have a judge who knows nothing about it decide. That is, most of these cases can be resolved with careful patience and listening and willingness to admit that you don't know all of the factors, all of the issues, all of the values and try to work with the family. Now there may be some cases that are simply intractable. Those are the ones that land in courts and those are the ones that I'm afraid are going to go to judges and one would hope that these would land in a British court where the judges are better suited to it. One of the problems that you'll learn about American courts, American judges, is 90% of American judges are subject to election. Very few, except for the federal judges, they're appointed for life, but the state judges are primarily subject to an election, to a recall election perhaps. But you know if it's going to be a decision, a question between whether we're going to follow what the doctor wants or whether we're going to follow what the family wants, what's the public going to say? The family. And these judges put their fingers up and test the waters and so you get such, and to show you how far in advance you can go, you'd have the encephalic baby, baby K, but the most dramatic case we've had was Jahe McMath in California and she was declared legally brain dead. Five neurologists, including the chair of the department at Stanford who was appointed by the court, five declared she met all of the statutory criteria and the judge said, oh, I regret to the family, I regret that the law is so strict but if you meet these criteria you are legally dead and the mother says only a parent can decide whether the child is alive or dead. Think of the implications of that. 300 million people in this country, each one deciding whether granny is alive or dead in the attic. The public health implications are incredible. But that's where we've gone. We've gone so far on the side of autonomy that the parent or the patient alone will decide what he or she wants and you must do it or so we think. I'm not so convinced that you must do it as John Lantos will tell you but it's not easy because they threaten to sue you, they threaten to go to court and litigation is very expensive and very unsavory and who wants to go to court? Have you been sued yet, Mark? Not yet, well, it can happen. 52 years. 52 years, you're still breathing and those pockets are deep. They'll be coming, we better stop. Best advice I got from Mark when I was here, Ed Dunn from Louisville, Kentucky, I run a five hospital palliative medicine, palliative care system in Louisville was never go to court, period. Just don't do it. If no other case that you cited today than the Terry Shibow case was not instrumental in convincing us that the court system is not designed to solve this problem, it just isn't and we have under-friended patients who suffer from anoxic brain injury, nobody to speak for them, no advanced directive and we go to court in Louisville to ask a judge if we can make this patient a DNR, a lot of natural death because he's got no life, he's vegetative, nobody to speak for him. And the judge looked at us and I wasn't actually or my social worker did, he looked at us and said, how can you ask me to make that decision? He said, don't you have a two doctor rule? And basically what the judge said, which is really true, is judges cannot make these clinical decisions, go back to the four box method, medical indications, autonomy is absolutely right, but it's not without boundaries and there has to be a medical indication to do everything including CPR as we all know, I've done thousands of CPRs as a surgeon, they hurt people and there's gotta be a medical indication to do it. Well, I think you're absolutely right and I recall being at a conference in Kentucky and this man came and said, can I sit in on your conference? I'm the Chief Justice of the trial court. I said, of course, so he's sitting right about there and so I called on him when a question came up and I said, Judge Johnson, what's your, he said, no, no, no, I'm here to learn, I don't know anything about this, I can't even pronounce the word you guys use. Don't come asking me, you're asking the wrong person. Go talk to somebody in the field, go get some doctors and find out. Just one quick plug, so my name is Ricky, Rickle Bouddow, I am a hospitalist over at Columbia University in New York and thankfully actually, the law there has since been changed. I think it was about maybe five or six years back, there is now thankfully a new surrogate law such that even if there hasn't been any sort of clear or evidence that someone did feel a certain way as long as there is a surrogate who is acting in the patient's best interest, we can then act on that. So that's one of the nice positive steps forward. That's right, there was a real problem in New York and it had to do with, what did you do with the incompetent patient who had a surrogate and you had to have the written authorization of the surrogate of the family member in order to have a DNR order and if they didn't do it, you couldn't do it. Yeah, so. It took about 10 years to get rid of that law when they realized this was a disastrous idea. All right, well thank you. We are running on Mark Siegler time and we are really late. I have to limit the number of questions. Just remember that we have two more speakers before lunch. So our next speaker.