 So, Dr. Kodesh is our next speaker. He is a professor of pediatrics from the Cleveland Clinic Foundation and a professor of pediatrics at the Lerner College of Medicine at Case Western Reserve University. He did fellowships at the University of Chicago in both hematology oncology as well as the McLean Center for Clinical Medical Ethics, and then he joined the Rainbow Babies Hospital where he was the founding director of the Rainbow Center for Pediatric Ethics. Dr. Kodesh was the principal investigator of an NCI-funded multi-site trial on informed consent for pediatric leukemia trials, and in addition, his important research has been funded by the American Cancer Society, the Greenwall Foundation, and the Cancer Treatment Research Foundation. Today, Dr. Kodesh will give a talk titled Pediatric Ethics, Lessons for Grown-ups. An unenviable position to stand between all of you and your lunch, so I'm going to try to be brief and hopefully provide some quality, but first and foremost, congrats, Mark, on 30 years of wonderful work at the McLean Center. Great to be back on the south side. I've been thinking a lot about pediatric ethics, and if there are any lessons for grown-ups that can be drawn, certainly I think in pediatrics we learn a lot from adult medical ethics, so there's lumpers and splitters. I'm going to do a little lump in here and some split in two. The American Academy of Pediatrics says children are most enduring and vulnerable legacy and that they have inherent worth, and pediatric ethics, I think, is best defined as a branch of bioethics. It analyzes moral aspects of decisions made relating to the health care of children. The photo you see on your right is from the first edition of our book about the ethics of research with children. My conflict of interest that I'm about to plug is our second edition will be available next month with great chapters by John Lantos, Laney Freeman Ross, and a chapter, Sarah, by Skip Nelson, about the Duchain muscular dystrophy interesting controversy by Skip and colleagues. So often I talk about the ethics of pediatric research, but this is I think more of a clinical talk, and I'm going to use some casuistry here. Tyler is a four-year-old with an acute GI bleed. He has a CBC in the emergency room. His hemoglobin is 4.7. His parents are devout Jehovah's Witnesses. They refuse permission, and I'll focus on that word permission, to give impact red blood cells. His heart rate is 196. His blood pressure is low. If you are the physician caring for Tyler, what's the right thing to do? Case number one. Here's case number two, Ashley. A seven-year-old female who, in the words of her parents, is permanently unable because of a static encephalopathy. Parents ask the surgeon to perform breast-bud removal, hysterectomy and appendectomy followed by estrogen therapy to close her growth blades and keep her small. And the goal is a kind of reverse enhancement, so that she'll not have menstrual periods. She'll not get pregnant if she's ever raped. It'll be easier to care for her at home as she grows. If you're the surgeon or the endocrinologist, the ethics question is always, what's the right thing to do? And here's case number three, Max, taken from the work of our colleague Bob Trug published in the New England Journal a number of years ago. Max is a two-year-old who has a large frontal encephaloseal. He survived a surgical excision, but he's left neurologically devastated. The parents insist on full medical and technological efforts to continue his life, despite the clinical team having recommended that he get palliative care. Max has an arrest and there is no DNR order on the chart. If you're the ICU doctor, what is the right thing to do? Do you do CPR or not? Those are the three cases. In pediatric ethics, I like to use a triangle to describe the geometry with the child at the top of the triangle. In adult medical ethics, by contrast, it's the doctor-patient relationship. We don't have the parents interceding as it were. I don't know if I have an arrow here, but over there, you see the clinician thing. So that's one fundamental difference between pediatric ethics and adult ethics. Another difference is to think about proxy consent, and the idea that substituted judgment, which was mentioned earlier, is a subjective thing and is really focused on autonomy. Whereas in pediatric ethics, we like to think more about best interests of the patient. Sometimes people talk about the harm principle, basic interests. There's different ways of putting it, but the idea is that pediatric ethics can be more objective and can promote beneficence. So this curve is interesting, and I do would like very much to have a pointer here. I don't know if this, there we go. This is an archetypal curve. No one's life actually works like this, but it's an interesting thought experiment, I think. When you're born, you have no decision-making capacity, and as you grow, you get to some point where you can participate in assent and then maybe informed consent. And then people can plateau, and often, but not always, there's some decrease in decision-making capacity, and below which you get to the point where maybe you can't make your own decisions anymore. But if you could measure decision-making capacity really well, accurately, precise, there'd be a point where you're at the same level here and here. So I'll hold onto that thought for a second about that same point. Assent, I think, is the holy grail of pediatric ethics. We know that providing understandable information is almost always ethically obligatory, but there has to be a distinction between inviting a child's decision and soliciting a child's views. And assent is really about soliciting the child's views and some amount of shared authorization. And it's hard, but there's a difference between this point and this point. And that difference is substituted judgment can be used if someone's up here and we can understand what they would have done in a particular situation, we can apply it here. Down here, we don't have that luxury. Important difference conceptually, I think. We've talked already today about parental autonomy, and I reject the notion of parental autonomy. I think parental authority is the proper language. Its autonomy is something that everybody loves to love in ethics, but it doesn't apply in pediatric ethics because children are not the property of their parents. If I had a hat, it wouldn't say make America great again. It would say children are not the property of their parents. That's the idea in pediatric ethics, and I think there's some applicability to adult ethics that we'll get to shortly. So I want to reject parental autonomy. I want to say that parental authority is legit, and I want to cite this paper from a wonderful young ethicist who I've had the privilege of working with, Brian Sisk, who talks about dilemmas that pediatricians can have when parents and older children disagree. A good pediatrician has these different tools in his or her toolkit and can apply them in different situations depending on the context. You could use the advocate model where you really try to empower the child. You could be more deferential and apply a little pressure to do if you think it's in the best interest what the parent wants to push for the power of the parent, and you can be more arbitrative. And I think this is a helpful framework in pediatric ethics. It might actually apply to adult medical ethics as well. So let's go back to the cases and try to sort of wrap this up and get us out to lunch. Tyler, I often said when I would hear a case, when I was training ethics fellows, is this a what's the right thing to do case, or is this a who gets to decide case? And in pediatric ethics, generally it's a what's the right thing to do case. In adult ethics, it's often a who gets to decide case. I think in Tyler's case, a who should decide case, this framework is ethically inferior to a what's the right thing to do case. If Tyler was 34 years old, it would be a who gets to decide case. It would be very different, and Tyler would likely die. And I think we would regret that tragedy, but the consensus certainly in adult ethics is that that's what we do if someone has an objection that it's deeply held to blood transfusion. Tyler is a lot younger than that. And so one lesson for grownups is that there are important differences between adult and pediatric ethics that need to be supported. And it's really important to not conflate adult and pediatric ethics. Case number two is the story of the pillow angel. It was, I think, one of the most interesting cases in pediatric ethics, maybe all of ethics in the past couple of decades. And I think here the tool of component analysis can be helpful. It may well be that the medical therapies could have been helpful, but the surgical therapies were quite challenging. There's a residue of eugenics in the sterilization aspect here, going back to Buck versus Bell. Really, I think in retrospect, people saw that it would have been problematic to go ahead and sterilize her, given all of that history. But some of the other more medical therapies might have been acceptable. There was a lot of concern expressed that Ashley's best interests weren't really the basis of her parents' decision making. There were accusations that this was being done for their own convenience. And I think we need to be much more humble than that. I think these parents from everything one could tell really were trying to be very thoughtful and do what they thought was best for their child. So for us to accuse them of just doing this for convenience was pretty problematic. And there's also this interesting idea that if we did the Ashley treatment on everybody, it would perpetuate a system where we're not giving good care to children with disabilities. We're just trying to make things easy. And so I think we need to be circumspect in judging motivations, both in pediatric ethics and adult ethics. And this would take some time to go through, but it's available on the internet. And I encourage you to look at. There's some really, really interesting things. And I love it because it reminds me of the coagulation cascade. Finally, some really important differences between refusal and demand, some of the things I've learned back here about positive rights and negative rights back in the day. In Tyler's case, parents are refusing packed red blood cells. In Ashley's case, parents are demanding or requesting surgical and medical intervention. Those are classic examples of expressing a negative right versus a positive right. Adult medical ethics, we say patients are free to refuse anything, but they can't demand tests or treatments. That simple dichotomy doesn't work so well in pediatric ethics, I think. I don't think that right to refuse packed red blood cells for Tyler applies to his parents in that case. One, I think of the most important contributions of pediatric ethics to adult ethics can be thinking about an ethic of care. Children, as I said at the beginning, are inherently vulnerable. They require our care from the outset. A newborn baby, if we don't feed him or her, is not going to survive, right? So there's that nurturing aspect in pediatric ethics that I think we don't apply often enough in the adult world. And it's sometimes thought of as a feminist ethics. The main thing I think is that it's focusing on relationships rather than rules. And I'm probably unfairly appropriating an ethic of care for pediatric ethics. But what the heck, I think it's a really good way of trying to think about things. And sometimes in adult ethics, I think we get too wrapped up in a more atomistic approach. And we don't recognize that we're really interdependent creatures. Pediatric ethics help us to remember that interdependency. What about Max? Here I just want to say that the loss of a family member is an ultimate tragedy. And there's this idea that I think is powerful that if one life is lost, it's as if the whole world has been lost. So healthcare professionals that are making decisions about resuscitation have to be more than technicians. There may be cases where futile CPR is justified for symbolic reasons, regardless of the patient's age. In this case, Dr. Trug decided to go ahead and do CPR despite its futility. And I had an interesting email exchange with him about that. We had a child die of neuroblastoma at the Cleveland Clinic last week, where the same thing happened. We ended up doing CPR even though we knew it was futile. And it just depends on the case. But I think we have to be really careful about digging in our heels and saying we will not do CPR when the parents insist on it. Because in the end, the parents will be the ones who live with the memory. And there is some moral damage corrosion to our souls as healthcare workers when we do things that are against our better judgment. And so we need to promote resilience and to help our caregivers focus on their own wellness. But in the end, it feels like a zero sum game sometimes around these CPR decisions on children that are dying in futility. So I don't have an easy answer to this one. But I can say that some of how we think about it in pediatric ethics, I think would be helpful in CPR and DNR decisions in adult clinical ethics. And I think this is my last slide. The vulnerability is an issue for children, but also for adult patients. We all face vulnerability and we grow when we're vulnerable. If we're not vulnerable, we're not going to grow. Pediatric ethics provides a framework that can be helpful for adults in terms of that vulnerability. Family dynamics are extremely important in pediatric ethics. And I think they're often underlooked when we are faced with adult medical ethics cases. So we ought to look at family dynamics more carefully in adult medical ethics. And that's maybe something we can bring from pediatric ethics to those of you that are practicing clinical ethics in the adult world. Thank you very much.