 Speaking of shared decision-making, and when it goes well and does not go well, no matter which side of the Atlantic we're on, John Parris is going to give a talk about lessons learned from the Charlie Gard case. He is the Michael P. Walsh Professor of Bioethics Emeritus at Boston College. His academic background extends to history, government, education, and philosophy. And he has published over 150 papers in the areas of law, medicine, and ethics. He has participated in over 80 court hearings, including the Notable Brophy versus the New England Sinai Hospital, which commented on the rights of patients in a persistent vegetative state to refuse medical care. Additionally, he has been consulted by over 500 organizations to comment on the ethics of medical treatments, procedures, and practices. Furthermore, Professor Parris serves as an editorial review board member for the Journal of Perinatology, the Cambridge Quarterly of Health Care Ethics, and the American Journal of Bioethics. He is also on the board of the directors of the Fallon Community Health Plan and on the board of advisors for advanced cell technology, both of which are in Worcester, Massachusetts. Today, Professor Parris will give a talk titled Lessons Learned from the Charlie Gard case. Let's give him a warm welcome. Thank you, Sarah, and thank you, Mark, for inviting me. I might say that when I met Mark here, his opening comments were, you look wonderful. Words I said to him, you only say because I'm old. It's always a pleasure to follow John Lantos. You learn a great deal from John. I've learned a lot from John over the years. We shared an office one time, and I learned a great deal in those days, way back when we all had common rooms there. And I've learned a lot and stolen a lot from John. I haven't seen the most recent article in the England Journal yet, but I certainly have read and used his article on Dostoevsky, which says, really, parents don't want to make these, nobody wants responsibility for these decisions. The doctors don't want it, the judges don't. Judges, I'm telling you, don't want it. Why are you asking me? I can't even spell in. They'll tell you. And yet we repeatedly go to them. And the case we're talking about today is exactly on the point. What happens when the parents and the physicians disagree? And there were two famous cases in England, one Charlie Gard, the other Alfie Evans, both last year and both landed in court. Now, the British have a very different way of approaching the issues from the Americans. If there's a dispute between the physicians and the parents, and any party brings the case to court, the court alone will decide what's the best interest of the patient. As the British courts have put it, we are not going to assess the reasonableness of the arguments put forward by the physicians or the parents, nor are we going to simply take the old method of saying we defer it to whatever the parents want, their values are prime. We will make the assessment for it. That caused enormous problems in both the Charlie Gard case and the Alfie Evans case, because the public, particularly in the United Kingdom, was furious at this, and it extended to the world, who of course got himself into this, but Donald Trump. And the US Congress, and they granted Charlie Gard a temporary visa to come to New York and granted the parents a temporary visa, despite the fact we don't want any immigrants, except from certain countries and with certain problems. And then, the argument we heard today was, ethics is difficult. And the ethics is difficult unless money is involved, and there was a lot of money involved in Charlie Gard. Charlie Gard's parents had raised $1.6 million and said, we're now rich, we can take them wherever we want. And they got a, this Charlie Gard had a very rare mitochondrial disorder for which there was no known treatment. But there was a doctor, identified only in the court transcripts, originally as Dr. I, later we learned his name, who said, I will treat him with this nucleoside therapy, even though it's never been tested on anybody with his condition, and even though it's never been tested even in animal studies, and even though I've never examined the patient, nor have I read his medical record, but send him with the money. We heard that today, money trumps all. And it's a problem. And the British judge, partly the differences in the way in which the British and the American legal system are established. In the United Kingdom, the case went before a high court judge, and there are only 108, they were appointed by the crown, and they have it for life, or till age 75. I was astonished to read, in the American scene, not only do we have the federal system with 50 legislatures and 50 Supreme Courts, all of which contradict each other in their standards, but 90% of the state judges are elected. You can imagine what happens when these cases hit the press, and the immediate response is, well, whatever the parents want should be done. And in England, you had a group called Alfie's Army that threatened to go into the hospital in Liverpool, take the baby out, and take him to Rome for treatment. And then when police guards were called, the press said, oh, they're trapping the baby in the hospital. The police were there to prevent Alfie's Army from invading the hospital and attacking the doctors whom they threatened to murder. I've been threatened with murder, too, right here at the University of Chicago. Oh, yes, we're going to throw you in Mindy's status, we're going to throw her off the roof, and we're going to slice your throat. Oh, ask Dr. Schreiber, he put us into this case. I think you put us into this case. Murder, most foul, has been threatened. And then the next is, of course, we're going to sue you. Now, if you haven't been sued, you haven't existed in the... I've been sued. But in the Alfie case, in the Evans case, it went to court, and the British court ruled that it was in the best interest of a child not to be subjected to... In fact, the court said this is not about money, this is about whether or not a child should be subjected to an investigational therapy which had never been tested, for which there was no evidence that it worked, by a physician who had never examined the patient or seen the medical record. And the British court ruled no. And the parents had all this money and wanted to go to court. And in fact, when the case came up, then some Italian and Spanish doctors came in and said, we think it should be done. And the doctors at Great Ormond Street where the child was being treated were under great attack. They were being threatened with physical abuse. They were being threatened with being sued. They were being threatened, period. And they finally went back to court and said to the judge, you should reopen the case and see what evidence. And the judge asked a very specific question. What medical articles have appeared in justification for the use of this therapy? And his answer was, the answer was none. And then he brought the doctor from New York into the court and said, I want you to examine this child and tell me why you believe this child should be subjected to this therapy and what's the basis for it from the published articles. The doctor came and said, oh, the child is now so profoundly compromised that it won't work. The doctor at Great Ormond Street said, that's exactly the way he was when you started this case. And the British case said, the court said, no, we are not going to allow him to be transferred. And then you had the second case of Alfie Evans. And this case got even more bizarre in the press reports because you had press reports saying that the Pope has intervened in this case. Well, I found this in the New York Times and I said, well, let's see where this came from. Well, the OR document was Breitbart News, which you are aware of. And it had nothing to do about Alfie Evans. It had to do with fights about who should control the Vatican's council on health. And it was really an attack on Pope Francis. Then Francis made the mistake that Mr. Trump does. He made a casual comment saying, I really am praying for this family and I hope that they were able to accompany the child through his last stages of life. This got interpreted as Pope says child should be transferred to Bambino-Jesu Hospital in Rome. Sort of a community hospital. And then everything went wrong. So here you have these arguments that the Pope now says there is hope for this child and I think he should get the treatment and it should be at Bambino-Jesu in Rome. And the British court said we're not interested in those issues. We're not going to allow this to happen. This child had a neurological disorder. His brain had turned to liquid. And there was no diagnosis and there was no known treatment for it. What do we learn from these? Well, we learn first of all that the public does not put a great deal of confidence and trust in science. Alternative facts now rule the universe. When John talks about facts, we have alternative facts. And there are other ways of looking at these issues and that's what we should do. And this alternative universe should prevail. Secondly, you had in these cases not only the degradation of science but the thought that the parent should be able to do whatever they want. Well, John Lantos talks about parental autonomy. What is autonomy? Autonomy is the right of the individual to make his or her own decisions. It doesn't in fact apply to parents, for minors. Well, we now know we have child protective services and they came... One of the things we learn is that regulations come into being because of a prior incident. And there were lots of examples of parents acting very much against the best interests of the child. And so we have child protective services. Then you also have the fact that even good caring loving parents can make terribly bad decisions. And John Lantos gave us the background of this. It's a frightening experience. And some of them so overcome with fear that they will cling to anything. Desperate parents of desperately ill children are desperate. And some of them... John gives us the data, 25% of them will say, do everything. Even though the doctors say in the literature there's nothing that can be done for this particular child. The cases go on and they become very difficult. And ultimately the decision was made in both Evans and Charlie God not to allow the transfer and not to allow the treatment. This did not sit well with the general public. The public was furious at this idea. And you come to the question of what should be done. In the American scheme of things, we tend to do whatever the parents want. That becomes the trump card. And we have the outcome of that. We have cases of Anne Cephalic's baby K. And the parents say, we don't believe she's not going to be able to communicate. We believe God's going to make her whole. So keep on going. You don't have 23 months. Or you have the more bizarre case of Jahe MacMath who was pronounced brain dead and a judge brain dead. And the parents said, we don't believe she's dead. We believe she just needs to get better. And we don't believe the doctors at Children Hospital in Oakland. We don't believe those three doctors at UCSF. We went to court and the judge appointed the chief of neurology from Stanford to do an assessment who said this child meets the criteria for statutory definition of brain death and the judge ruled that she was legally dead. And the coroner issued a death certificate. The parents said, we don't believe she's dead. Her heart is beating. She's warm. She's moist. She just needs to get better. And then they took her to New Jersey. Why New Jersey? Because there is a bizarre statute in New Jersey that says if the patient has a well-formulated religious objection to death by irreversible cessation of heart and respiration, they are not dead. What 13-year-old girl has formulated clear religious views of this type? And we now know that the religious views of the parents, which were quite unknown in this case, do not prevail for the beliefs of the child. So the parents went there and then after a couple of years, she succumbed to liver failure and the parents agreed that this was her demise and she was buried in June of this year. What do we learn about these cases? We learn that the public does not put a lot of trust in the medical community. They don't believe the doctors. They believe that their personal beliefs ought to prevail. And they're willing to endure incredible amount of suffering on the part of their children to get their will, to get their way. One of the standards that we have is of processes, rather, is of all places, Texas. In most jurisdictions, if there's a dispute between the family and the doctors and it goes to court, who knows what's going to happen. But Texas has a statute, as does California, as does Virginia, that says if there's a dispute, the parents have in Texas its 10 days to find another hospital willing to treat the patient. And if so, transfer it. If not, the current hospital and physicians have no obligation to provide the treatment. And in the cases that came up, the most famous which was Son Hudson in Texas, and there the child, 40 other hospitals were called, all of whom rejected the transfer of the case. And so the decision was made to stop. This was a child with a severe congenital dwarfism and the doctors believed he was suffocating because of the ventilator. But Texas gives you a way out. If there is another doctor, and there was in the Evans case, there was a doctor in New York who was at Columbia Hospital, no less, and there were doctors in Rome at Bambino Jesus who said we'll take him, but the doctors in Bambino Jesus said the most we can do is palliative care. He could get that in Liverpool, England as well and did. But if there is, isn't it better simply to transfer the child, avoid all the adverse publicity, avoid all the anger, avoid alienation of the family, avoid the bad press, avoid courts, and the outcome is pretty much going to be the same as it was in these cases. The chances of this child surviving are extraordinarily limited, but you haven't alienated the family. I'm not so sure that it's a great way to proceed because what we know is the numbers will escalate. It's not just going to be those who've got the $1.6 million fund, and it'll soon become a demand on the part of the entire community, and that the insurance should cover it, or Medicare or Medicaid should cover it. I mean, one of the bizarre forms in the Jai MacMath case was her family wanted to bring her back to California, so she'd be eligible for Medi-Cal. But in order to do that, they had to have the death certificate rescinded because Medi-Cal, oh, Mark, I'm not making these up. This is the stuff out of which your center does its best work. We look at these and say this is odd. But when you're setting policy, how do you formulate it? I think John Lantos and his insights on Dostoevsky were probably the most insightful that I've read, saying nobody wants to make these decisions. And one of the things we've learned is that we don't want to have these decisions just made by the doctors because they could be wrong. We don't want to have them made just by a panel of experts because we don't trust experts. Experts, the elite are out these days. So should we do it by what the press demands or what the crowd outside the hospital is demanding? That's not a better way to go. I don't think mob rule is not the way to come to these decisions. And so we have centers like the McLean Center where people come and spend a year and think about it and then they publish about it. And it's probably a better way to do it than having a mob screaming in the thing. Or having a judge who really doesn't understand the issues very well and who depends upon others to tell him or her what the facts are. And as John Lantos made very clear, facts are very disparate entities. What facts and what values and how do we best solve it? What we know is the British seem to think they've solved it by giving it to courts. What we know is in the American scheme of things, that's a terrible way to go because you've got hugely disparate ways of doing it. You have in New Jersey saying it depends upon what the family wants in the Quinlan case. You have in Massachusetts with the profoundly compromised Mr. Sekowitz saying, well, we'll have substituted judgment now. That's a huge problem with even nomenclature. We think substituted judgment, what do you think substituted judgment means? Any idea? Any idea? Now these are all, well, these young people, they're younger than anybody. I've never seen it at the McLean Center. They are visitors. Oh, well, let's call on the real people then. You're not a visitor. You're a visitor. Oh, they're all visitors. You know, it's like when you go into hospitals, you say, who are the doctors? There's not a doctor in the hospital. Or if you can identify one, she'll immediately say that she is a pathologist. Substuted judgment doesn't mean what it sounds like. It doesn't mean that the doctor's role is substitute his or the judge's, his or her judgment, that's what it is. It's got a very interesting old definition. It says that the role of the court, when this case comes before it, is to quote, don the mental mantle of the incompetent. This came from Judge Giliakos in the Supreme Judicial Court of Massachusetts. And I've said our Supreme Court, I'm from Massachusetts if you haven't figured out, does this regularly. They don the mental of the incompetent with great regularity and great alacrity. Then you have the highest court in New York saying, that's crazy. And what you need is clear and convincing evidence from the patient when competent as to what he or she wanted. Well, where are you going to get that in the Charlie guard case? He was an infant. Or where are you going to get it in the Alfie Evans case? He was an infant. How are we going to make decisions? Under these standards. And that's what John Lantos gives us. It's not as easy. It's more complicated, more difficult. You can't please everybody. The old old, the sigla standard, which was, the doctor knows best. That got buried. You grew up with it and you haven't abandoned it. And then we went to, well, whatever the parents want. And that turned out to be not such a great idea. The British say, well, whatever the court. And Eric is not going to grow up with that. He's one of these young guys. He and I once wrote an article. Long chapter on decision making for newborns, I think. Not so easy. It's complicated. It's difficult. It's hard. I think what we've learned from these British cases is, the British have resolved it to their satisfaction by going to court. That's the least best way to do it in the United States. In great part because the judges want no part of it. And they will kick it back to whatever the family wants. And they've given us legal decisions in baby K that an annus of phallic should be treated. Or they've given it to us in, in, even though she's legally dead, carry on. And you say, this is not a way to go. And that's why we have the McLean Center. Because we're going to solve these problems. Thank you very much. Michael Masal. Excellent presentation. The Italian government made baby Evans a citizen. When you come to the border here, if you have a disabled child, you're not allowed in the country. I think there is massive confusion on when disability allows you to be a citizen. And when it allows you to be excluded. As we heard in the lecture, if you have money, you're a citizen. John, I'd like to go back to your point about lack of trust. About what? Lack of trust, parental trust. Because I think that's at the heart of my concern with what you're describing here. And I think it's founded. I think it's founded that many parents do not trust that the doctors are giving them accurate information. And part of what I heard in John's talk is that doctors and nurses overwhelmingly think that death is preferable to life with disability. And we have that information overwhelmingly from a number of studies. And when I look at the data about doctor decision making and what we know about disability, we know 40% of vegetative state diagnoses are wrong. Behemic math was actually believed not to be brain dead in the later years after her diagnosis. So part of what's interesting about her story is we had an example and we've had a couple more since than a people who were declared brain dead that probably no longer meet those criteria, which is uncomfortable for us. Doctors are fallible and we're not very humble. And I think that we also, when I look at doctor-patient relationship and I look at patient-centered care, I don't see patients centered or patients anywhere in this conversation about negotiation. I think that there's a power differential and doctors are fallible and we're not very humble and we make a lot of mistakes and we don't rely upon sometimes the best sources of information. We don't teach disability in medical training. So a lot of doctors are relying upon their bias when they are counseling parents about disability. So I just want to go to the heart of the issue of trust and how we as ethicists can try to correct that problem before we look at other ways of imposing the courts or unilateral DNRs or whatnot in this process. Thank you. Thank you.