 Good morning. I'm delighted to welcome you to the second day of the McLean conference. As you remember from yesterday, this is the 32nd annual McLean conference. The first program this morning will be on Pediatric Ethics and our moderator will be Dr. Laney Ross. Laney is the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics and is also a Professor of Pediatrics, Medicine, and Surgery. Laney is an Associate Director of the McLean Center and the Co-Director of the Institute for Translational Medicine. Laney Ross has been the recipient of many honors during her career, including a John Simon Guggenheim Morial Foundation Fellowship in 2017 and in 2015, the winner of the William Bartholomew Award in Ethical Excellence from the American Academy of Pediatrics. In addition to moderating today's first panel on Pediatric Ethics, Laney will give the third talk during the panel on the topic, quote, Who Speaks for the Child when the Parents Cannot? End quote. Other speakers in the Pediatric Ethics panel will include Mark Sheldon, Megan Collins, and Eric Kodish as well as John Lantos. Please join me in welcoming the moderator of this Pediatric Conference, Dr. Laney Ross. Thank you. Thank you, Mark, for that kind introduction. I do think you confused the pediatricians and the surgeons since I think the surgeon should have had the first morning. But anyway, I hope everyone is awake and the only thing that stands between us and getting Mark back as the McLean Prize Lecture recipient is this morning panel on Pediatric Ethics. I'm very excited to introduce my colleagues. The first speaker will be Mark Sheldon, the Distinguished Senior Lecturer Emeritus in Philosophy and also in the Medical Ethics and Humanities Program at the Feinberg School of Medicine at Northwestern University. He has also served as adjunct senior scholar at the McLean Center and senior policy analyst at the AMA and currently serves as adjunct faculty and ethicist at Rush University Medical Center here in Chicago. Professor Sheldon has published and presented talks on a variety of issues, including informed consent, confidentiality, the forced transfusion of children of Jehovah Witness, children as organ donors, disclosure, and the use of Nazi research. Please join me in giving a warm welcome to Professor Mark Sheldon. Welcome back, Mark. Thank you, Laney. I do want to thank Yolanda for her help and me trying to get online, do all the things that I needed to do. And I also want to thank my cat, Magiku, for his willingness to share his home office with me for the past several months. This morning, I'm going to talk about an issue that has concerned me for a number of years, back to a point where I spent the year at Loyola University working with Dave Tomasma. And the very first case I encountered involved a three-year-old who had just come back from the recovery room who had donated bone marrow for her one-year-old sister. In that case, we were talking about bone marrow, but it surprised me that this had occurred. And the questions that came to my mind are, on what basis could a child be subjected to a procedure of this kind? Who had consented? Who had weighed the risks and benefits? And then finally, what physicians could be comfortable with this when a perfectly healthy child is put in harm's way for a non-therapeutic purpose? Now, this involved bone marrow donation. She had undergone, though, a general anesthesia. So it wasn't the similar situation where adults donate bone marrow. But then I found out that actually children were donating paired organs. And there was a case that got the national attention involving a seven-year-old brother, a twin who donated a kidney for his brother. And he was presented in the national press as a hero, as very, very generous, all the ways that we would want to talk about this. But it really concerned me. And so I actually looked at the literature and discovered that, in fact, there had been some people who had given attention to this. And initially, it was a psychiatrist, Melvin Levine, who focused on the question of whether a child could consent. Then he also looked at the issue, he and his group looked at the issue of best interest. Norman Faust had a paper in which he tried to come up with some kind of way to substitute judgment. And then, following that, there was Danny Maguire and John Lentos, who had written papers in which they appealed to some idea of forced altruism, as being a reason why we should permit this to happen. And then finally, until the paper I'm going to discuss directly this morning, there was a paper that appeared in the Hastings Center by Vig and Vig, I think it was, putting forward ideas about the family and how somehow this decision was in the same category as decisions that parents would normally make for their children to have one of their children donate an organ to another child in the family. So, what I want to look at, though, this morning, and I'd be happy to give you all the references I just mentioned if anyone is interested, but I want to look at this morning, and I'm so happy that Lainey and John are sharing this panel with them, there was a paper that appeared in 08, Miners as living organ, as living solid organ donors, and Lainey was the lead author on this. And the paper is interesting. It does look at benefits and risks and the benefits are self-esteem seen as a hero, which is exactly the way this child was presented in the National Press many years ago. Family relieved of a burden of caring for an ill child, and there's more parental time, psychological benefits, I guess, in the sense of attention given to the donating child. The paper does also identify risks, lower self-esteem, sense of neglect, issues about missing body parts and scars, guilt or shame if the transplant fails, possible coercion, risk of surgery and anesthesia, mortality, slow, but it's there, two in 10,000, a 10-fold greater for a living liver donation, and the usual sort of things. It does point out that the Amsterdam consensus developed in 04 came to the conclusion that minors younger than 18 should never be allowed to donate, and so I thought that was interesting that they pointed to that. The paper identifies four conditions, I'm sorry, the American Academy of Pediatrics also dealt with this, identifies four conditions, and the paper that I just mentioned identifies five conditions, so I want to go through those conditions and talk about them. First of all, both donor and recipient must be likely to benefit. Donations restricted within an intimate family. Is there a way I can get rid of my picture? Because now, since the slide has suddenly got larger, my picture is taking up part of the slide. Okay, anyway. Oh, thank you. Okay, okay. No, it's hard for me to see part of the slide. That's the issue. Okay, thank you. That's better. Both donor and recipient must be likely to benefit. Donations restricted within an intimate family. I have to mention that Lainey has used this concept of an intimate family elsewhere, and I think there are two questions that come up. First of all, I'm not clear that there's any definition out there of what an intimate family is, except for the exclusion of strangers. And second, when we think about the families that we're in, or the families that we were raised in, the actual family dynamics are often a challenge to discern and very difficult to ascertain. Also, the likelihood of success cannot be low, and that's about avoiding one of the psychological risks to donating a child failure or not measuring up. The next condition is a surgical risk for the donor must be extremely low. This, to me, is a kind of odd discussion as far as this condition is concerned, in that there's no defense of the basic assertion, just comparative risks of donating, for instance, of a kidney or a section of literature. Are there data, and I'm sorry, is data a way, the use of data, is this a way actually to answer this particular question would be the issue that I would raise. Three other possible sources for organs must be exhausted. Donation is a last resort, a potential recipient, otherwise likely not to survive. So that's a pretty clear condition. But moving on to number four, the donor must agree to donate freely without coercion, and that is somehow established. This willingness to donate freely is somehow established by an independent donor advocate. The advocate the paper says should be trained in child psychology and development skills in communicating verbally and nonverbally with children knowledge of relevant medical procedures. And again, this idea of an intimate family comes back to the picture only with an intimate family. And then this is a quote, the child advocacy team should ensure that the degree of emotional intimacy can justify the risks. Truthfully, I have no idea what that means. Problem, really, the focus on the conditions, a general, a more general problem is that here we're focused, we're being asked to focus on the conditions necessary for uncoerced consent, but not assurance that the consent is in fact uncoerced. Are the conditions sufficient? So we have some abstract idea of what conditions should obtain. But how do we actually know that they have been obtained? Number five, emotional and psychological risks to the child donor would be minimized before discussion with family, child role playing, etc. All these reviews. But what is this about? Does this just make everyone comfortable with the pending procedure? In that sense, emotional and psychological risks are being minimized, but through a process that reduces concerns that should not be minimized. Is this an attempt, in some sense, at a normalization that distracts us from the other kinds of issues that are at the center of this and that I've raised? A little bit more about condition four, the issue of informed consent. There's a statement in the paper that says this, the donor must be informed that the donation may have acute and long-term health risks. Do we know them? Ascent is important. Active agreement to participate and not your failure to object. Does the child, in terms of ascent, does this adequately deal with the pressure of family dynamics, particularly within a so-called intimate family? One of the things that I think is interesting is that if you think about, the pressures are greater. It seems to be within an intimate family than when the child may not be so emotionally at the center of this in their own mind. And then there's a talk about the courts that I found puzzling. This, as far as the AAP is concerned, does not believe that the court approval is necessary. Donor advocacy team is now viewed as adequate. It used to be the case, and I'm not sure, actually I'm not sure if it's changed or not, that where a child gives up a paired organ, there had to be court involvement. And the court would appoint an ad litem to actually report to the judge in regards to the best interest of the child. I can't agree. I think this keeps everything in house in a way that doesn't adequately protect the interest of the child. If this is going to happen, I think, minimally, the court needs to be involved. Also, the authors say some of these conversations should occur without the family being present. And I'm very puzzled by that idea. And also, I think what gets me a little bit is that the Academy ignores the previous literature. Review of the previous literature shows that the first proposal did focus on obtaining form consent. That was the Melvin Levine paper and best interest, but they were actually set aside. Foss talked about substituted judgment, I'm sorry. McGuire and Lantos talked about forced altruism and Dwyer and Vig put forward normative concepts of the family, but I'm not sure that any of that, all that discussion is important, would have been important for the AAP to review, but I'm not sure that they did. So just sort of finishing up here. It seems to me reviewing the literature, and that includes the paper by Ross and the position of the AAP, arguments justifying taking kidneys from healthy children are at best inadequate. I think there's really a sense in which they all fall short. At worst, they're actually one form of rationalization or another. We want to get to a place where we would allow this donation, because obviously we want to save the other child's life. What we see in these various papers over the past 30 years is, at least in my view, ultimately a way to try to rationalize doing this. Then the larger question is then on what basis would such action be justified? Would it be utilitarian? Utilitarian arguments, if we're talking about in some form or another exploiting an individual are obviously problematic by themselves, but it's also interesting if we're talking about applying utilitarian argument in relation to where the line is drawn within a particular family. Now, one of the things is, well, there is this trend going on, which we recognize increasingly the right of adolescents to make decisions for themselves. I actually support this, but it's in relation to adolescents dealing with terminal illness. The difference between adolescents deciding to donate solid organs and adolescents who are terminally ill deciding to forego treatment is that as far as the latter is concerned, very sadly, tragically, they have the experience on which they can base those judgments. That's not the case where we're talking about adolescents donating a solid organ. They have no clue what that means. Then finally, just a kind of reflection here. There is a visceral reaction at prospect of being party to unavoidable death. It's terrible. I think in a way it ends up being character guardian in character where adults act without real benefit of irrational justification, more on the basis of faith. But the problem with acting on the basis of faith when we make decisions for others, particularly vulnerable individuals like children, seems to be problematic. Particularly, it seems problematic for physicians who really swear to do no harm to engage in this activity. I just want to mention if you want to review some of that literature that I mentioned. I did a guest editorial for the Cambridge Quarterly back in 04 where you'll find brief discussion, for instance, of Lantos' discussion, which I'm still thinking about. It seems to me it's a challenging discussion. Thank you. Thank you very much, Mark, for starting off this panel in such a provocative way. I now have the privilege of introducing Megan Collins, who's an assistant professor of ophthalmology at the Wilmer Eye Institute at Johns Hopkins, where she is also faculty at the Berman Institute of Bioethics. She specialized in pediatric ophthalmology and adult strabismus, including ambliopia, what we know as lazy-eyed congenital cataracts, retinopathy of prematurity, vascular anomalies, and craniofacial malformations. She was part of the Johns Hopkins University school-based eye care team, which recently won prevent the line. This is Jenny Pomeroy Award for Excellence in Vision and Public Health for their work researching and addressing vision problems in high-poverty schools. She will give a talk titled, Reducing Pediatric Eye Care, Disparities, the Role of Schools, Providers, and Legislatures. Please join me in giving a warm welcome to Professor Megan Collins. Megan. Thank you so much, Lainey. I don't know if anybody else felt the same way that I did last night, that I was missing being in the law school dining room, celebrating the first day of the conference with all of you, and doing some singing with the ethics team. I hope everybody is doing well. I'm going to talk today, as Lainey said, about school-based vision care, and I'm really focusing on school-based vision care in the era of COVID. Let me use my remote here to advance the slides. I have the following places that I received grant funding from, as well as consultancies, not discussing any off-label medications today. So, as all of you may know from prior years, when I've talked about this, I have a passion for pediatric vision care and have a passion for thinking about different models to deliver vision care for children who may not be accessing it on a regular basis. And, you know, the reality is we know that at least 25% of kids actually need glasses, but more than half of these are not obtaining necessary care. And there's a lot of complexities to the system in that screenings are usually conducted at school, and then kids go into the community if they fail to screening, and then they go somewhere else to get glasses, and then they, of course, need to wear the glasses regularly. But what happens when kids don't get screenings at school, or even if they do, they don't go to the eye doctor in the community, they don't go to the eye doctor in the community, or they don't get the glasses afterwards, turns out that, of course, all of those kids who need glasses, our data suggests that roughly 5% of those who should have been screened and had an eye exam and glasses end up not getting them. So, this has been a large argument for what's going on, and why aren't kids accessing care in the community, and what can we do about it. And school-based vision programs have really been a hallmark as to how do you overcome structural advantages, how do you advance this ethical mandate to address basic health needs, and this becomes even more important, given some of the work my team as well as others have done, looking at the impact of poor vision on academic performance. We have just finished a three-year study at Johns Hopkins, where we looked at students in grades pre-kindergarten through 8 across the city. We had children in 132 schools that received school-based eye care, and we were able to show that receiving glasses at school had a positive improvement on their academic performance that equaled one month of learning for all kids, and three months of learning for kids who were in special education, or who were in the lowest 25% of their class at baseline. So, sorry, I'm working on my remote here. So, as you may recall from me talking about before, Vision for Baltimore is a program that we've developed across the city. It's a partnership with our health department, our city school system, Johns Hopkins University, our optometric partner Vision to Learn, and Warby Parker, and what this program does is it serves children in every single pre-k through eighth grade school across Baltimore, and it brings this Mobile Vision Clinic to school. We conduct screenings for children, children who fail screenings, so a screening is something done by a technician. It indicates that a child may be at risk for a vision problem. They're offered the opportunity to have an eye exam. The eye exam is done by a licensed optometrist, and kids who fail the eye exam then get to pick out their own glasses if they need them. The glasses are brought straight to school. They're prescribed and dispensed at school, and they're replaced if they're needed. So, over the first four years of the program, we've served over 60,000 students, so those students have undergone vision screening, and an incredibly high number, one-third of them have actually failed that vision screening, and then been offered a school-based eye exam. We had incredible success in the fact that we actually been able to give eye exams to over 10,000 students during the first four years of the program, and I think 80% of those kids needed glasses, so we've given out over 8,000 pairs of glasses, and one of the beauties of the program that we've always been very proud of is all cares delivered directly at school. So, this is a slide that I showed last year, and then we all know what happened March 13th of this year. Schools closed across the country due to the coronavirus. By mid-March, almost 50 million K through 12 students in the U.S. were out of school. So, the question is what happens to a school-based eye care program when schools close, and I want to step back for a minute because I think it's important to ask what happens to a lot of things for kids when schools close, and I'm going to draw your attention to what we have called really the child well-being school support framework, and it's this acknowledgement that schools are not only a place where children receive learning, but it's also a place where kids get millions of meals. It's a place where they get health services. It's a place of safety, supervision, and security during the day, particularly for kids who are on stable housing, kids whose parents are essential workers, and we have a group at Hopkins that has actually started looking at how have kids been impacted by COVID school closures both last spring and then into this fall, and now it looks very much like it's going to continue into this winter. And we've argued from an equity perspective that so many of these services that schools were providing, they were really there to help shore up these pre-existing structural injustices that kids may not be accessing eye care, they may not be stably housed or getting three healthy meals a day. School closures have exacerbated all of these structural injustices, and there's just been this compounding of threats to the well-being of children, and particularly with regards to health services, which I would argue is probably getting less attention than some of the other provision of school-based services such as, you know, trying to still provide meals, trying to ensure children are still having some academic curriculum. So what type of school-based services am I talking about? Honestly, it runs the gamut. Schools are homes where kids get vision and hearing screening, they may get vision and dental health programs such as our vision for Baltimore program, there are school-based health centers, there are mental health programs, there's speech occupational physical therapy, there are vaccinations, but let's focus specifically on what happens to school-based eye care. So there are really two different components. There are state mandated vision screenings that typically happen at schools, and then there are school-based programs like ours that in addition to doing screenings, we're doing that follow-up, we're connecting kids with the eye exams and the glasses. So first let's talk about the screenings. Pre-COVID, 41 states plus the District of Columbia had mandates for vision screenings in schools. So when schools closed in March, any kids who had not been screened by that point in time in the year, that just stopped, that was all suspended. And with the plan of let's resume next fall. And I think we all know that things have changed drastically this fall with schools opening in a very patchwork framework of virtual versus hybrid versus in person. So we've done a recent analysis looking at who's doing vision screening in the U.S. during COVID, and as you'll recall from the last slide, 41 states had been doing vision screening at this point in time. Only 12 have officially issued provisions about what they're doing this school year, and almost half of them have actually suspended vision screenings. The others have modified them in terms of the students that they are seeing or the details that they include in the vision screening. And the vast majority just haven't made any position yet. As a lot of school districts and health departments and the ones who kind of issue these screenings have really been waiting to see what's going to happen with COVID in schools. So this is a tracker that is by Burbio. And what they have are tracking is what schools are open, what schools are closed and what schools are partially open or closed or hybrid in the U.S. And they update this actually every 72 hours. So if you look any of the areas of the pale are schools that are actually closed or versus the dark, deep violet are schools that are open. There's kind of that swath in the middle of the country. And so imagine when you're trying to do something like vision screenings and you have a school that is closed, you can't do it. A school is partially open. You have, you know, you won't have only a small percentage of your children there. So it really sort of threatens the ability to do those types of vision screenings. This becomes incredibly significant when you think about the fact that 75% of vision problems in children are asymptomatic. They won't say mom, dad, I can't see. They'll usually fail a vision screening first. So if these kids are not failing vision screenings, they may not be having vision problems detected that they otherwise would have known about. And we know that can have long-term impacts for their vision as well as for their academic outcomes now as well. So what are we doing in Baltimore? I'm happy to say that we are still going, but on a significantly reduced schedule because of the fact that Baltimore actually most schools are still closed. As of this week, they're opening up 27 schools across the city. And they've already opened up a number of schools partially for student learning centers. So what we've done is we have developed a modified infection control protocol. Everybody's wearing their appropriate PPE. We've modified the exam. And we're offering the services outside the school building, as you can see, which we've always done with our vision clinic, but we now have the door open. And we offer by appointment so that we stagger children. So there's an appropriate amount of social distancing and clinging of equipment between students. We've also increased health education significantly to parents, including offering sort of Facebook live sessions about vision care and vision screening and how does the program work, online educational material. These are a couple of pictures of our program now. So this is two members of our team who you think school based vision care outside is simple. It's easier during the summer, but then when you get into the fall and it gets cold and it starts raining, we've actually built an awning that goes onto the van. So you have sort of a little enclosure. And then of course we have all of our team wearing their masks. So I just like to pause for a second and think, so what am I worried about and why do I think this is important to consider? I think there's three ways of inequity for a vulnerable child. And I think you can think about this through any of the categories that I talked about from the school support framework, whether it's food or continuity of learning. But from health care and from vision exams, we see that during this past spring, children did not receive any vision screenings or eye exams from mid-march onwards. And during this academic year, which I think many people had early on thought maybe it was going to be a year to catch up, we know instead it's going to be a year that it's probably going to be a loss of most kids not having access to those things. And what happens is those impacts are compounded. When schools do come back and resume full-time sessions, there may be less of a priority for school-based screenings or eye exams because there are so many other things that we know children are going to have suffered learning loss and other issues that we're going to try to shore up efforts on that front. So I think it's important as we're moving forward and planning for the future that we no pun intended don't lose sight of vision. And here's some of my thoughts about how do we do that. We really need to strengthen program communication and parental engagement. You know, in the school-based healthcare and the era of COVID is going to have to do a much better job than I think it previously did at involving parents in knowledge about the program, resources for connecting for kids outside of the program, and also developing relationships with community providers. I think one of the things we've always struggled with in Baltimore, and I know other programs across the country have, is you're able to give a child a pair of glasses and have the, you know, that initial exam in the school, but what happens after that? And there has to really be sort of this robust overhaul within the healthcare system for us to build these stronger connections so that, you know, if we go through another pandemic, which we all hope that we will not, we're not leaving kids without access to the resources that they have become so dependent on the schools for. Finally, there's a huge role for thinking about telehealth and other app-based technology, particularly within the world of vision care. There's a lot of people working on this, lots of, you know, smartphone apps to do screening or to do part of eye exams. And as we, again, have sort of been forced to think about technology in a very different way, from the school perspective, we should be ready and willing to be innovative in how we use this to help kids get access to the care that they need and develop those relationships with parents. I have my email address here if anybody has questions. I just want to thank you all again, Lanie and Mark for the invitation. I wish I was there in person with everybody. I hope everybody's staying safe and well and look forward to answering any questions during the panel discussion. Thank you very much, Megan. Really important topic about health equity. So I'm going to be talking about who speaks for the child when the parents cannot. I don't see my slides. There we go. I have no disclosures. I do want to make two important acknowledgments. This talk is based on two manuscripts that I wrote with colleagues. Michael Fishman was a medical student who I worked with for several years, and he led the empirical project. Rupali Gandhi and Aaron Taladi Pakhet led the more analytical theoretical project. And what our project was to look at is who speaks for the child when the parents cannot. For adults, this is often the topic of clinical ethics consultation. When a competent adult presents to the hospital but is unable to make health care decisions, the first thing we ask is does the patient have an advanced directive? Has she named a durable power of attorney for health care? And if not here in Illinois, we have a ladder of who would speak for this individual if they were unable to speak for themselves. Now, when children, children are presumed to lack decisional capacity. There are exceptions and there are circumstances, but parents are presumed to be the decision makers for their children. So what happens when neither of them are available? So in Illinois, the question is who is a legal parent? And the answer is the biological mother is presumed to be the legal parent. In Illinois, a father is a legal parent if he's married to the mother, he signs the birth certificate or he goes to court to get paternity rights. Of course, we always tell men that if they sign the birth certificate with rights comes responsibilities. Another set of legal parents are parents who legally adopt a child. Now what happens when the patient is a child and his parents are not available? And the example we've given in the paper was a fire and he's the only survivor. Of course, now we could have if the whole family got COVID and his parents are in an ICU and unable to speak. In Illinois, healthcare surrogate act after we started our project, actually after the empirical data were collected. At the time when the study started, we had seven states that had surrogacy ladders. But as I mentioned, in January 2009, it was expanded to include children. So initially, it didn't actually even say that this list could work for children. But in January 2019, it was added that children could be included if a child needed a surrogate. And in fact, they added a ninth, the temporary custodian per the juvenile court act. Problem was is who they left out, which for children may be grandparents, aunts or uncles or godparents who may be the more appropriate decision maker. So how large is this problem? It turns out that 3% of U.S. children currently do not live with legal parents, presented to U.S. children living with unmarried parents. So instead of the single parent becomes incapacitated, this issue would arise. And that was 13% in 1968, is now 32% in 2017. So this is a real possibility. And in fact, that the three institutions that were represented in this study, all of us have been contacted either through the emergency room or in an ICU setting about this issue in the past few years. So to surrogate decision makers for children, there are patchworkal policies actually across the states. Some states include minors in their surrogacy ladders like Illinois currently does. There are also kinship caregivers. So California was the first to pass a combined medical educational consent law for minors in 1994. And by 2010, 29 states, including the District of Columbia, have policies to allow kin caregivers to provide consent for children's medical needs. Kinship providers can obtain permanent guardianship, but this entails a formal process. And then only 21 states provide consent to major medical decisions. And finally, there's something called the standby guardian, which really came about during the era of HIV, where in some states, parents can nominate a standby guardian who will assume custodial responsibilities of the child if the parent is unable to perform them, assumed to be for acute situations, but clearly may be needed in the long term. So an empirical study, we decided needed to be done until we surveyed general and subspecialty outpatient clinics and the pediatric intensive care unit at three different hospitals in Chicago between November 2018 and March 2019, both online and paper. We got a convenient sample of 669 persons. You can see the distribution. And we got 521 respondents who provided partial or complete responses. And again, some of it was done online, some of it was done in paper. And our first finding was that 50 of our 512 respondents were excluded because the respondents were not the legally authorized representatives. So these children were with an adult in the clinical area, and yet there was no legal guardian with them. And so this was the question we asked. Imagine that you are unable to make decisions for your child. Imagine you were in a serious car accident and could not respond for a few weeks. Whom would you choose to make decisions for your child? And we wanted them to choose up to three and mark with an X one per column. And these were the options they could give. One of the limitations of this study is that we didn't ask whether there was another legal parent. And you'll see that impact of leaving out that question and the results. As I said, we're only going to look at the results of the 91% who were legal guardians, 90% of whom were biological parents. There was four had state appointed guardians for 1% and the two were step parents. The people who came as non-legal guardians, very interesting to look at that list, not clear that the healthcare providers actually asked and asked if they actually had paperwork, which was giving them permission to bring the child to the clinic at this point. And so we did a surrogacy ladder. Who would they choose first, second and third? And not surprisingly, the vast majority chose other legal parents. And it may be that all who had a second legal parent chose that option. Again, one of the limitations of this study. Second choice was most frequently a grandparent, but aunt and uncle also came in. And third choice was an aunt, uncle, godparent and grandparent. And we only followed the lines for the point of this slide, just to look at those that resulted in over 5%. So what you could see is the most common was first let it be the other legal parent, make decisions, then a grandparent, then an aunt or uncle would be 31%. And these three options, though, still add up to less than half of the options. So basically, if we were to create a surrogacy ladder like the Illinois Healthcare Surrogate Act that's mainly used for adults, we don't have enough consistency to even hit a majority. So and then how do you prioritize within a group, right? Grandparents may include biological maternal and paternal grandparents, as well as step grandparents. How we deal with it in adults is all people at the same ladder level get to make decisions. Would that be how we would do it here with multiple grandparents claiming that they had the right voice? Siblings may include half siblings, as well as step siblings, and even biologically unrelated siblings. And of course, this gets to the whole issue of biology may not determine intimacy. And Mark Sheldon and I can argue about what I mean by intimacy in the Q&A. But biology may not determine intimacy, physical proximity, or willingness to take on the responsibilities of healthcare decision makers. So if asked, a parent's decision may be based on some individual's involvement in the child's life, the surrogate's own health status, the surrogate's willingness to take on the responsibilities. And one can imagine that these factors may change over time. Grandparents were clearly the most popular second choice, but by the time the children are older, the grandparents may be more frail and may not be able to do that. And who I then assigned to be my child's guardian when the child is two or three may be very different than who I'm assigning at age 15 or 16. So what this comes down to is that we actually need to think about advanced care planning for children. And then the question is, who is going to have those conversations? So I have to say that as a general pediatrician, I'm told that every visit that I have to address all the questions in the American Academy of Pediatric Sprite futures recommendations, which often includes over 50 topics to address in 15 minutes. And then if the child is coming for both a well child visit and a sports physical, I get to add on another 79 topics that were introduced by the AAP Sports Medicine group, again, all within 15 minutes. So I also just wanted to think, imagine you walk in with your healthy newborn and your pediatrician says, so imagine something tragic happens to you. Who should speak for you on behalf of your child? Not the way I'm going to introduce my first several well child visits. Now, how many? And the answer is some, maybe most, young parents write a will, but that only kicks in after the parent dies. So the scenario that we gave was you're in the ICU, but you're not dead. So we're not really going to your will on who's going to be the custodians of your children. So that becomes part of the problem is then what I'm asking in that clinic visit, if I'm to do advanced care planning is to imagine something tragic happens to you. Oh, no, you don't die, but you're more a bunch. So now who should speak for you on behalf of your child? And how often will should the parents and general pediatrician review these choices? Because as we said, people move, people become frail and even some of the surrogates may die. So in some advanced care planning should be in the purview of pediatricians. It probably belongs in the purview of the general pediatrician. But while general pediatricians should raise it and probably even remind parents that they've made some decisions, they probably going to have to leave us with parents to do on their own time. Maybe it should become part of the my chart where they can just list this so that we know not only who can come to the clinic with their child, but also who should speak for them if they became incapacitated. Because those could be two different situations. The person you permit to bring your child to the clinic may be just out of convenience. The child came home from sick and is complaining of ear pain. May not be the person who you would want to be making long term decisions just because of who works and who's available and things of that sort. I do think that this type of information could be aided by the electronic medical record. The section of the my chart can ask about this and send out reminders yearly. Lawyers may also raise the issue and encourage parents who come in to write a will to also complete a durable power of attorney for health care on behalf of themselves but also on behalf of their children or recommend that they documented or have their pediatricians documented in the medical record. Surrogacy ladders are useful but not sufficient as use of top three surrogacy ladders only made it to slightly less than 50% of what all parents would want. Although more research needs to be done in a broader population with an improved survey tool. So with that I will introduce our next speaker and thank you and I'll be happy to answer questions during the Q&A. Our next speaker will be Rick Kodesh who's a pediatric hematologist and a professor of pediatrics at the Lerner College of Medicine of Case Western Reserve University. Previously Dr. Kodesh served as the F. J. O'Neill professor and chairman of the Department of Bioethics at the Cleveland Clinic Foundation and as the founding executive director of the Cleveland Fellowship in Advanced Bioethics. Dr. Kodesh served as the chair of the Bioethics Committee of the Children's Oncology Group and is appointed member of the American Academy of Pediatrics Committee on Bioethics. Today Dr. Kodesh will give a talk entitled Once a Man and Twice a Child. Please join me in giving a warm welcome to Rick Kodesh. Thank you Laini. Good morning everybody and I'll start out by saying Mazaltov to Mark on the upcoming very imminent award of the McLean Prize. Well deserved, very proud of you Mark and I know that there's some reciprocity that you're very proud of all the wonderful speakers at this conference and the progeny of your of your work, your bioethics children and grandchildren as someone said. I am going to talk this morning about Once a Man and Twice a Child. This is a phrase that my grandfather Erwin Cohn of Blessed Memory used. My grandfather was born in 1900 so it was always real easy to know how old he was and in the late 80s and early 90s, he lived to be 97, he would frequently say Once a Man and Twice a Child. So this is a tribute to him in some sense and the building on a foundation of a talk I've given called Pediatric Ethics Lessons for Grown Ups and I am going to try to use the technology here to advance the slide myself. My disclosure is that I have a consulting agreement with Insight to be on their data sharing review panel. Will not affect this talk at all. Wanted to begin with cases as Mark often taught us to begin with cases. Two archetypal cases to think about. The first is a two-year-old male who comes to the emergency room brought by his parents with a fever and a stiff neck. The doctors suspect meningitis and they propose an LP but the parents refuse. The second case is a 77-year-old male who has worsening dementia and he insists that he continue to be permitted to drive. Says that this has been a great pleasure for him as many guys love to drive over the past 61 years and he doesn't want to give up the keys. The children ask for his keys. I'm going to put those cases out there for us to think about to frame the talk because lately I've been thinking about decision-making and to give away the punchline of this talk. I'm going to say I think we've overthought decision-making in ethics and I think we can take some lessons from pediatric ethics and how we think about children to sort of understand why it is that we've over-emphasized decision-making. But let's look at this sort of list of kinds of decisions first. On the top you see the ultimate sort of best situation deciding for oneself. On the bottom you see deciding for others. Young children, those who have never had decision-making capacity. In the middle there are a couple options for thinking about decisions for those who are unable to decide but have been previously able to make decisions. Number two is basing a decision on a holistic assessment of a person's values and life story. Pretty good you know set of foundations I think philosophically to make surrogate decisions or deciding for others based on what the person indicated most recently which I think is often done but probably not as good as the holistic assessment. But at the bottom certainly is trying to make a decision for someone who's never had decision-making capacity. And I've shown this slide before. It's really in some ways sort of the essence of this question about at what point do people have decisions to make capacity to make capacity to make decisions. I don't know if you can see my cursor or not with this technology but I'm going to try anyways. At the point of birth when the court is clamped children get eventually to a point of assent. In pediatric ethics we call this assent with two S's right ASS ENT. But lately I've been thinking that maybe we should reformulate it as ASC ENT that there's an assent, there's a growth of decision-making capacity and eventually we get to a point as competent adults where we can make our own decisions and then for some but not all elderly there is a decent that begins and people who get dementia eventually get to a point where they cannot make their own decisions anymore maybe the 77 year old in the case that I showed originally is at this point right now. There are some tools to measure decision-making capacity. Paul Appelbaum's work certainly stands out in that area and we can quantify this and try to be objective but but I think we've been overly focused on decision-making in bioethics and I'm going to talk about that a little bit more in the next slides because this would be the once-a-man and twice-a-child sort of formulation here and it's never perfectly symmetric of course so a couple points about this. The first is as I prepared for this talk I learned that there is such a thing as the theory of retro genesis you may all be very familiar with this I just learned about it and over the past few months and I would say it's been debunked but it's an interesting idea that we cycle back to an infant-like state as we age. There are certainly parallels of helplessness and reversion to vulnerability as we get older but I would also remind us that we're always vulnerable and we're always helpless to some extent and certainly 2020 has shown us that if nothing else. There is the applicability to both young children and aging adults and those with dementia of an ethic of care. The spectacular work of Carol Gilligan here I think pertains and the idea that as we need care there's an obligation on others to provide that care especially family members friends communities and then important differences and the risk of what I'm going to call a disrespectful analogizing I want to be be clear that I'm not trying to make a total argument of similarity between infants and elderly people with dementia. So what are some of the key differences? The former the infant is always helpless the latter is not and I think really important to be respectful both of children and infants but also of elderly who have dementia. The dementia is almost always gradual but so is infant and child development just in the other direction. Clinically the former that is infants have what I call a resilient protoplasm we see this in the Peds ICU all the time children that we think are not going to survive somehow managed to and certainly as I was doing a lot of adult ethics consultation I didn't see that kind of resilient protoplasm unfortunately. Ethically in the slide before showed this the latter group has a track record of decisions values and life narratives and finally finitude the idea of a life well lived and from many elderly people that I talk with the acceptance that there's a beginning and an end a time for every season as the as they say and that there's a natural order of things as opposed to the profound tragedy of the death of a child. So what I'd like to do is call for a richer account of medical ethics that would attend more to interdependency to vulnerability to the social determinants of health and to measuring I think the quality of a society by how it treats its least well off. The next slide I think speaks better than I do a quote I recently found it's a simpatico critique of late 20th and early 21st century bioethics I think we've gone astray and I call for sort of a realignment of thinking about this by less emphasis on decision making and the quote is by putting decision making at the center of its understanding of the moral life this is what bioethics has done this view treats cognition and rational will is the essence of our humanity and radically downplays unchosen obligations more importantly it implicitly treats those who depend most heavily on others because they are not able to make choices as diminished in worth and I added the italics here this this thing that if you're unable to make a choice somehow you're diminished in worth I think is is problematic and pediatric ethics can teach us about this this is a quote from Yuval Levin in a book review earlier this week actually in the Wall Street Journal but I wouldn't be a good fair and balanced person if I didn't show a quote from the New York Times as well as the Wall Street Journal I think it's important to represent both papers and this is a recent headline showing the Groningen protocol is making progress that in the Netherlands it is now permissible for doctors to help end the lives of terminally ill children with active euthanasia even between the ages of one and 12 I've spoken in opposition to this before and I continue to be really firmly opposed to it I think it's scary and dangerous and I would urge all of you to reject these arguments that say oh it's a different culture we can't understand them they can't understand us that's all that's all good and well to understand cultural differences but I think there are some fundamental universal moral things like parents shouldn't have decision making capacity to terminate the lives of their children so what is the real situation Bob Marley says check out the real situation some of you will know this tune he goes once a man and twice a child and everything is just for a while and one question maybe we can talk about on the panel is in this photo does Bob Marley have decision making capacity or not few implications and then I will wrap it up vulnerability is an issue for children but also for adult patients and pediatric ethics I think can provide a framework to be helpful when adults are vulnerable and then family dynamics impact children to a considerable extent and these factors are likely more important for adult ethics than is generally appreciated again think of the 77 year old who is still driving and maybe shouldn't be in the role of his spouse adult children or the parents who are refusing a lumbar puncture from the beginning so this web of relationships this idea that decision making happens sort of as a singular thing by an individual I think should be replaced by more of a matrix of supported decisions and understanding things about vulnerability and interdependency that we're ignoring now the current pandemic has underscored as I said both vulnerability and interdependency and one hopes that our field that is medical ethics will remember these lessons after a vaccine restores um a semblance of normal life to society um and um finally and most importantly I think caring for others especially those in most need can be clearly a burden but also an opportunity to grow and a way to make the world a better place so I am going to conclude by saying thank you and also say I'm looking forward to getting the band together again next November in Chicago a place of music and to sing with you and I look forward to the panel discussion thank you very much for listening thank you very much Rick it's now my pleasure to introduce John Lantos who spent several decades here at the University of Chicago McLean Center Dr. John Lantos is the founding director of the Children's Mercy Bioethics Center at Children's Mercy Hospital and a professor of pediatrics at the University of Missouri Kansas City School of Medicine. He was on faculty at the University of Chicago for two decades before becoming the John B. Francis Chair in Bioethics at the Center for Practical Bioethics in Kansas City. He's the former president of the American Society of Bioethics and the Humanities and of the American Society of Law Medicine and Ethics Dr. Lantos has published five books and over 250 academic works and topics such as bioethics the doctor patient communication religion and medicine and the ethics of clinical trials today Dr. Lantos will give a talk titled three lessons learned as our children's hospital responded to COVID-19 please join me in welcoming back Dr. John Lantos. John. Thank you Annie and it's great to be here even virtually like Rick look forward to getting the band back together I would just like to start by adding my thanks and praise to Mark for many decades of inspired leadership you know we don't always appreciate that Mark's true genius as a teacher is that he got some pretty amazing results when he was starting with material that was shall we say not very promising. McLean Center always took in many students who could generously be classified as misfits and mongrels refugees from their home disciplines of pediatrics or medicine or surgery psychiatry I mean all the smart and promising docs went into cardiology and orthopedic surgery but Mark took us as we were and ignited a spark we were all people who when everyone else was plowing ahead with what Gretchen Schwartz he characterized as clinical momentum we would perceive all sorts of ethical issues and feel moral distress we didn't fit in I remember when David Cronin one of the first surgeons to do the fellowship joined he didn't want to tell his surgeon colleagues that he was studying ethics so when he went to class he would tell them he was going to the gym ethics was like a kinky sexual proclivity. Mark you provided an intellectual home an astounding opportunity for networking a fierce loyalty to the program's graduates and your role model your passion for teaching as a true calling I think has really inspired us all the best tribute to your work is in the brilliant talks that we heard yesterday and we'll hear more today for me it's truly humbling to hear about the amazing work that this program's graduates are doing on issues ranging from global health and justice to health care disparities to vision care for poor children moral distress moral injury leadership ethics consultation end of life care women's health it is an inspiring legacy so thank you mark from the bottom of my heart we will all be lonesome when you go but I know that since this is a calling for you you will not really go you will just continue to inspire students in new ways and in whatever new roles you take on my prayer for you is that you get to spend more time with your kids and grandkids and then you get some nachas watching others pick up the torch and carry on what you so beautifully created and nurtured over all these years so thanks Mark you called about uh oh somebody said back in January February must have been March to ask for this talk and you needed a title so I talked about three lessons from COVID-19 from our hospital hoping that by November I'd have learned three lessons and now sort of had to put together a talk to figure out what those are I made lots of lists and I'm just going to highlight some of the things that I think we learned as we went I have no conflicts of interest the amazing thing for hospitals is that almost overnight when this thing broke hospitals had to do this astounding array of tasks develop new supply lines for PPE drugs devices new protocols for clinical care redesign family centered care initiate telemedicine support staff morale manage budgets regional collaborations the list goes on and on and we had to build the plane as we were flying it and it was a an astounding thing to try to do when most of the world was at least temporarily closed I asked our hospital ceo what key lessons he learned and he made this shortlist agility and decision making leadership communication visibility and vulnerability the need for constant monitoring of the wellness and morale of employees dealing with the financial implications of COVID and developing new ways of regional cooperation I'm just going to talk a little bit about a couple of these one of the things we've heard a little about and that had a big impact on staff morale was this idea that health care workers were heroes this was especially tricky for people in children's hospitals where we were not seeing a lot of COVID cases our hospitals average COVID inpatient census has been two patients some have been very sick but for the most part we have not been seeing the problems that others have been seeing and yet people treat us as heroes part of the ambiguity of the hero designation is that much of what's heroic about what health care workers are doing arises because other people have screwed up this was an ICU doc from New York City who said we can't justify the deaths of doctors and nurses and say they're heroes we don't want the recognition we just want the support they died because somebody didn't have enough protective gear every time someone dies or is thought I was a hero I want people to think somebody screwed up Carlo Bellini writing from Italy called this a risky myth and highlighted again the ways that heroism in this context was usually a measure of how badly the systems were functioning rather than a measure of how heroic the health care workers were when I see one picku nurse talked about the guilt said my experience of COVID has been this cup wrenching helplessness and what I can only describe as survivor's guilt she wrote I was torn between the guilt of not enduring what is happening in the hotspots watching other nurses in the opposite situation who face furloughs and layoffs how can it cause such opposing situations in health care and how do I belong in this category of hero I'm not caring for patients with COVID-19 a lot of people found themselves stressed by the fact that they were living in parallel worlds intersecting worlds of home work and then COVID home and work and this created conflicting obligations we heard about some of these yesterday as health care workers had to deal with taking home the fact that they themselves could infect their children there would be vectors for this terrible disease one of the things that our hospital did with leadership from the top was an extraordinary effort at paying attention to employee wellness we had COVID wellness teams at various staff meetings created a phone line provided suicide support there's a pandemic support group we had meditation and mindfulness classes virtual support for the team so it's an inspiring legacy of paying attention to issues that arose during COVID but like everything that I'm going to talk about today offers lessons for what to do in the post-COVID world one of the other big issues for the hospital was redesigning family-centered care we went from sort of the ideal of having families involved in every aspect of a patient's care and thinking of themselves as crucial essential partners of the health care team to the situation in COVID that everybody is familiar with where the health care workers look like visitors from outer space where family members can't be present at the most crucial times and this led to again much moral distress and problems in the quality of care because parents truly are members of the health care team in pediatrics and so in the NICU there were concerns about safety the anguish of living limiting parents to one at a time the need for parents to await their own test results before seeing their babies the initial ban on breastfeeding and many of the other issues highlighted on this slide we found workarounds we found ways to bring families in some of them may again outlast the pandemic telemedicine and the use of virtual devices for much of this care is something that both doctors and patients found problematic in some ways but beneficial in others it allowed family conferences with relatives who were distant it allowed many doctors to be brought together at the same time telemedicine essentially recreated the house call and many doctors said improved the care by allowing them to see people in their home environments the financial impact was huge our hospital CEO estimated that we were losing a million dollars a day back in April it led to tough decisions and our hospital CEO started doing live connect teleconferences that people could join in April unfortunately we had to furlough about 10 percent of the workforce because we weren't getting COVID patients and we were canceling all elective surgeries it was an inspiration that the remainder of the employees started an employee assistance fund that raised $250,000 to help colleagues and I'm happy to say that most furloughed employees were eventually rehired the other big lesson that a lot of the talks yesterday focused on was the way that COVID highlighted the intersectionality and the ways that healthcare schooling daycare and many other issues overlapped in ways that highlighted connections that we all knew about but hadn't necessarily brought to the forefront before this article by one of the co-authors one of our program graduates Maggie Moon talked about sort of how these impacts sort of snowballed from family to unemployment and food security to mental health to the effect on other healthcare problems like under immunization and delayed care for underlying complex chronic conditions for children we're going backward in COVID times in many ways including higher rates of poverty higher rates of hunger around the world there are more child marriages there's more domestic violence academic disparities are increasing one economist in looking at the response said we gave less money to the entire child care sector than we gave to delta airlines and she wrote I've been struck by how much the federal government scrambled to save the airlines wouldn't it be terrible if we lost our airlines it wouldn't be great but how terrible would it be for our economy if we lost all our child care in our schools we didn't devote nearly as much money to those issues the overlap on COVID and racism is pretty clear because we know that brown and black people are living much closer to the edge and have much less wiggle room to deal with the stresses of unemployment and poverty this was a multiple choice question about how much liquid wealth do people have facing crisis and for african-americans in the united states today it's about one one hundred foot what it is for white households very Churchill and colleagues wrote about the future of bioethics and all this and said it shouldn't take a pandemic to make us face these issues and said there's much talk about returning to the new normal for bioethicists such as language should set up a red send up a red flag normal life is and has been unfairly healthy for too many of us who are too long one of the interesting things that happened and had a big effect on our hospital was the overlap between COVID and the national protests that have come to be labeled as part of the black lives matter movement after after the protests in the streets uh George Floyd's death our CEO and chief diversity officer wrote a letter to the entire staff saying as health care providers we recognize the profound the long-term impact racism has on the health and well-being of children families and communities and we recognize the impact these continued acts have on our black employees who are repeatedly traumatized by witnessing and experiencing acts of racist violence and it led to a number of very specific institutional commitments to try to address racism within the institution uh societal racism is one thing we've always thought of ourselves as the good guys on that but uh when we looked internally we found that uh we didn't we weren't walking the walk as we were talking the talk and that led to specific institutional commitments to increase racial and ethnic diversity but also to create things like a quarterly journal club on issues of race and racism nanti racism task force a new EVP position hospital-wide book groups in which employees get together and read some recent works about race racism and white fragility michelle weems is the new executive vice president for equity and diversity these are some of the books that hundreds of our employees are reading and discussing and looking at sort of what we can do to make our institution and our lives part of the solution rather than part of the problem so when i look at uh three lessons probably the most important one is about this overlap of disease and racism which is a problem both among patients and families communities but also may be more directly relevant within health care institutions relevant because that is something each of us can do something about by trying to figure out whether we're part of the problem or part of the solution we've learned both on the local level and national level that leadership matters that having inspirational uh and ethical leadership makes a huge difference and finally i think the key lesson is that we all need to dedicate ourselves to thinking about the implications of what we've learned for what the post-covid new normal will be and as mary churchell and colleagues said uh not let it be just a return to the problematic old normal thank you so much and again thanks to mark for so many years and so many great experiences look forward to the panel great so at this point thank you very much john i'm looking forward to bringing all of us back into the panel um got some great questions i would encourage people to continue to bring us questions into the q and a and to remind you to stay on the call after the panel ends because we'll be honoring mark steigler um so the first question um and i'm going to throw it out to all of us who have written on the topic of uh children in being organ and tissue donors is is there a difference between donating a solid organ versus bone marrow and uh we'll let mark have the first word but then i would love to hear from the rest of us who have written on this topic uh thank you uh it was really interesting to hear the other presentations um i yeah i think there's a difference um in the sense that we're talking about a procedure that that involves less risk i mean there is the risk of general anesthesia but still giving up an organ and what the long-range consequences repercussions of that are uh would be different than donating bone marrow it is interesting that at least and leni knows more about this than i but the last time i had checked in the state of illinois a parental permission alone was okay for bone marrow donation but the donation of a of a irreplaceable organ needed again to have court involvement and i may not be up on where the the law is at this point john do you want to comment since you were quoted for poor steltrusion yeah you were quoted as well but um i think there's a big issue if you think that uh the risks of the donor is relevant if i if i understand your arguments mark it doesn't i'm i'm not sure how that would fit into your assessment but any seem like almost any unconsented touching would be ethically problematic for for me the risk would be crucial and that there would have to be some threshold of risk below which organ donation from a minor would be permissible as a sort of enactment of altruism uh used the title forced altruism with deliberate irony since uh it is oxymoronic i never realized that i took that i took it seriously john um because i didn't know everything he says is full of irony because because if we're talking about moral education there's a you know there's a big difference between telling a kid if he takes his favorite toy to nursery school that he may have to share it versus take your favorite toy to nursery school and share it those are two very different things in regards to what i think of as moral education but that's interesting thank you no i actually think i think you're right i was just sort of trying to answer that question but i think you're right there's a problem with bone marrow transplant uh donation as well i mean we could look at blood transfusion if a child had the right blood type and was the only one would it be okay to take blood i mean seems to me again risk would be the relevant the threshold setting uh consideration i would say risk but i would also think about the benefit so we actually have mark a separate policy statement at the aap for tissue donation because we did think the risks were so much lower because it is replaceable and but it's also there's a huge interestingly issue of the psychological so uh bone marrow donation particularly used in the cancer setting children still may die and much more frequently than with for example a kidney and so the psychosocial issue shouldn't be ignored as well one of our questions that came back to you mark was um what about the harm that might be done for a child who's not permitted to save their siblings life so i'll bring it back but no i think that's a good question um and truthfully what i always think about is the novel and then the movie ordinary people and i think that that child is probably going to need support and therapy but that's i think that's the way to deal with that kind of situation i think i'm not sure where eric uh where rick would be on this but but my sense is that there is an issue with that there would be an issue in terms of making these kinds of decisions for others in a kind of way where we want to balance risk uh there is a utilitarian element to this where you know if we talk about where the line is i have no clue where the line is um in in that regard uh when we talk about families and and so on so yeah i would have a lot of discomfort um about that i would um point out that when i looked at the program mark um and saw your your title revisiting the use of children as organ donors um i didn't even think about bone marrow or stem cell donation um my colleague steve jaffy and i published a paper a number of years ago defending um parental discretion uh in in this uh regard and and i think it it does rest primarily on the low degree of risk to the child um but also on um and this is this is admittedly the opposite of how i usually argue so i want to have my cake and eat it too if that's okay um this is within the zone of parental discretion i think and lanie you're absolutely right there there are tremendous psychosocial implications um uh if god forbid the the recipient gets gvh or dies but i i would just um say that um it's not up to us as healthcare workers to make those judgments for parents i don't think when the risk is so low and when it's a tissue that regenerates uh and that um the potential um for um saving the life of a sibling or even knowing that one tried again in our clinical experience with with parents that to sort of take the phase one desperation scenario and move it over they don't have the ethical concerns about phase one research in childhood cancer they don't have the ethical concerns about exposing a young child as a potential marrow or stem cell donor that we might have so it's interesting i know that that you like the term parental autonomy and i i actually dislike it but in this case i think it's uh it's it's a reasonable parental discretion when we're talking about bone marrow so the only thing i would add the issue of where we differ rick is that um we argued in both statements for the need for an independent donor advocate somebody who could talk to the child and make sure that they truly are on board um and we did that unfortunately because of some of the cases that came in the literature of a sibling who had raped his sister and then his sister was asked to be a his stem cell donor and in a sense a second rate from our perspective and so um but with the caveat that the purpose of the living donor advocate really wasn't about looking to exclude kids but to really give them um some resources and sort of scaffolding their own ability to make decisions and understanding the implications of what it would really mean to refuse as well as to agree to be a bone marrow donor but i don't want to spend the whole time on that um i would like to there was a little bit of a discussion in some of the questions about the use of substituted judgment in pediatrics versus the use of best interest so who wants to start with that one well i mean i can just begin by saying that it seems to me that substituted judgment is near well impossible in a child younger than you know five or seven and a decent number of children who have serious health care problems fall into that so you're really left for those cases with only the harm principle basic interest or best interest i think substitute judgment could cook it kick in for for adolescents or those in the ascent but it's uh it's uh it's not for everyone in pediatric ethics and i guess my sense is that the distinctions are of much more interest to bioethicists than they are to clinicians or parents that what people uh generally do is uh some amalgam of all of the above what substituted judgment essentially being a way of saying you know if you know a competent adult would decide this maybe we can assume that they're making a decision based on their interests maybe that means it's in the child's best interest then we weigh risks and benefits and we sort of put together every uh possible theory to try to come up with the best solution on a case by case basis well i think one of the things we're trying to do with it is go beyond the medical best interest so i think the best interest standard to the extent that it's a useful theory um which i'm not sure it is but it's supposed to encompass more than just medical best interests right but also include the cultural the social the psychological and in the uk the very adamant that best interest should also include the ascending autonomy of the child so um since i've brought up that issue i would like to go to uh dr micah misal's comment which really goes to um both to to rick and to megan is where is the social justice in that seniors get medicare and meals and children with special health care needs have been on hold for rehab needs since april and really just again getting to the point that schools are a lot more than just educating but providing food mental health services regular health services etc so throwing it to you guys throw in eyeglasses megan i was going to say rick do you want to start or no no you please i've spoken already well um first of all it's such a it's such an important point and this is the big challenge that schools had become the home for so many things for kids and with schools closed they are not getting access to these things and it becomes a real social justice issue um with regards to children with special learning needs um you know we've seen such a backlog of kids being able to access any of the either the learning or the therapy services that they were supposed to be getting through the school setting virtually uh it's you know it seems crazy to me that we can we can assure different things for adults that we're not offering or providing for kids particularly uh covid if anything i think has caused such sort of a glaring lens on the inequities that exist that if anything my hope is this helps us realize we have to do better and that it's not just you know one program here and one program here it really needs to be policy overhaul um and how how we pay for children's health care how we connect kids with you know in the community um if anything it's been sort of a disincentive for a lot of you know people to to see kids who don't have health insurance or they don't have or they only have Medicaid when you look at sort of the the the eye care community um because it's they're not getting they're not getting paid so they're not seeing them so they say well let's just get them seen through school-based programs and then you don't have school-based programs and these kids literally have nowhere to go yeah i would just add um that we got a a really um moving and thoughtful letter from most of our medical students this summer after George Floyd was killed um asking for an anti-racist curriculum in our medical school more than we already had and we've tried to think carefully about that but also brought on it out to to be more anti-oppression more broadly and I think children in some sense are in oppressed category is I think about it if you think about the question about Medicare versus Medicaid and the uneven Medicaid expansion that came after the Affordable Care Act so you know Medicaid is sort of the best we have for financing the health of children unfortunately because there's so many children in poverty and I guess my one of my hopes for the new administration is is that Medicaid expansion will be uniform and that there will be more attention I think I guess I would sum it up by saying to say you're a pediatric ethics person is synonymous I would hope with saying that you're a child advocate and I'd like to see us all do more child advocacy Rick I think the one thing that I would also share is you know I've been as I've been interviewing ophthalmology residents and fellowship applicants this year more so than any other have I seen that issues of social justice and health equity and community engagement are front and center and and I find that really inspiring and I find that the message is clearly getting out between undergraduate and graduate medical trainees about how important this is as part of their career and their career is not just what happens between you know a doctor and a patient in a clinic setting or a hospital setting but it's really about how do they engage and connect and build bridges into the community so I'm hoping that that continues to happen uh I want to bring up a question from Eric Wiles uh switching again to can seeking ascent backfire when we ask children for their ascent for an intervention and instead they offer dissent but we still proceed with the intervention or or we talk them into it or we uh are we talking about that with adults too right um but yeah but there's a little bit different there's a little bit different I mean there was an interesting paper I can't give you the reference right now I was done at University of Minnesota looking at adolescents who donate an an organ and they were asked why they were willing to do it and in some cases it was because they had been kind of the difficult child in the family and this was an opportunity for them somehow to be approved of by the family there was one case where the family had promised a kid a new a car um there's also the issue of the fact that adolescents are looking for some kind of ordeal by which to pass from adolescents to adulthood and most societies have that kind of thing here in the states we don't really have it um and oftentimes we have adolescents looking for their own means of making that passage and that seems to be reflected in this study as well this particular paper wasn't approving or disapproving they were just really interested in the reasons why these adolescents were choosing to to donate um like a kidney I want I want to push back a little bit on on that looks um in that in the history and we don't have great data because we didn't keep track but in the history and I've studied it less than a hundred children have ever served as a solid organ donor we could agree that probably 99 of them were inappropriate but it's small numbers and in the last 20 years they've been less than five so you know as you talk about it the real issue is actually bone marrow and I think many of us think that the risks are low enough um because children are not serving as living solid organ donors there are exceptions and some of them might agree to I wasn't sure if the question I wasn't sure if the question was about donating organs or whether it was generally about ascent for routine medical treatment it sounded like it was more about routine medical treatment and for that we might think about some equivalent to the zone of parental discretion where we have a zone of child discretion the same problem of seeking ascent and then overriding it arises when we seek parental permission for something that they're not allowed to refuse it becomes in my opinion a comforting ritual we're going to pretend to ask you for permission you're going to give it and we'll all feel better but implicit in that conversation is if you don't we're going to do it anyway because we've decided it's in your child's best interest and you don't really have the right to refuse those treatments so ascent functions in the same way sometimes I think you're absolutely right I think um and that's why at least in the research setting there are you know specific places where our child's ascent is requested and their descent is absolutely binding and there are the types of research yeah and certain types of research example where we don't even have we don't ask because the answer is we're going to do it and I think that's at least more honest um you know we think about like vitamin k which is a huge debate um then mandatory by uh jch o regulations and most hospitals around the country question is why are we even asking but I just want to get back to john's uh john's interesting analogy about parental discretion and ascent discretion the there may be ethical you know um uh consistency there but but legally there's a big difference right there at least when it comes to ascent for clinical things there isn't a big legal foundation for requiring that whereas for parental provision there is and so my response to the the question actually has to do with selection it has to do with which procedures you um you you try to solicit ascent for which which treatments which tests and um and and if you are not serious about um respecting the choice of of that young teenager or older teenager then uh then then I think it's more informing than it is soliciting ascent and there are there are things where you want to give the the patient his or her own discretion and there are there are times so I think when we get into trouble is when we use ascent too broadly in some sense um and aren't selective about when we deploy it and johnna clark who's a he calls it titrating directiveness like for decisions where there is a choice you titrate it down and say you know here are the facts what do you want us to do when there isn't a choice you titrate it up and say we need to intubate now yep sounds very wise um our late colleague bill meadow used to do something very similar in it saying we were rather than always asking for permission um some of us didn't necessarily agree where he drew the lines the um the next set of questions actually goes to uh karen devon from canada wanted us to talk a little bit more about physician assisted death in canada legal ages 18 surveys show that half of pediatricians feel that mature minors should be included if capable what are our thoughts yes and I would say no just going from a single word I would say maybe uh my um since I showed something in my talk the slide my concern really is about very young my my concern is for everyone when it comes to active euthanasia but setting that aside my special concern is is for young children who have no part and I think if we're going to take mature minor seriously um uh we we need to to have equivalency with what adults can decide yeah and I want to rick I just want to say what you were talking about was the groaning in protocol and the question I wanted to ask you about your comment on that was were you objecting to that because because of the issue of a possible deterioration of the slope where we where we engage in something more wholesale or because what the dutch are describing are situations presumably and they they supposedly have physiological evidence and I can't make a judgment about that that uh these children are going to experience ongoing physical pain very serious physical pain so are you saying that there's no particular case where infant youth or infant euthanasia would be morally acceptable or are you saying that yeah there may be cases but but we don't want to go down that road so I'm a little unclear what your objection was I'll send you my paper from the Lancet a number of years ago but it rests foundationally on parental decision making versus someone making their own decision it is supported additionally by almost never is there a case where aggressive palliative care is insufficient and if you look at their criteria what one of the most bothersome criteria is um um uh unreleivable suffering and the the idea that a clinician can judge on unbearable suffering in an infant I think just clinically doesn't hold hold water yeah well that's what I that's what I was saying that that is they talk about physiological studies that they've done but again of course an unbearable suffering is the criteria that's used in the Netherlands as opposed to here in the States where we talk about terminal illness with less than six months to live which which I've which I think was primarily um a standard that was politically possible to put in place I mean because it was identical to the hospice standard that we'd all gotten familiar with um and and I know from I had a student who worked on this issue and interviewed people were politically involved in putting that law getting that law passed that that's exactly what they were doing was making use of the hospice standard the Dutch so don't make use of that but but the hospice standard actually in pediatrics is different than it is in adults and we don't have a six month requirement you know I'm talking yeah I know I realize right see um I actually will question the whole use of the mature minor standard um we have no good test to determine what is a mature child so it basically comes down to if I agree with their decision making they're mature and if I disagree with them they're immature and I find that very dangerous um and so definitely do not want to see uh a physician assisted suicide moving down into the minors I think you wouldn't be in Canada or they have no age of consent for regular treatment so but I'm struck correct uh by both in both the questions and the discussion how quickly and easily uh even in the face of COVID and everything we've been talking about disparities and institutional racism and all that how quickly and easily we move back to these rare and esoteric bioethical dilemmas about consent for bone marrow transplant or lowering the age of euthanasia which it seems to me are not the most important issues we're facing as a society with regard to the well-being of children right now I mean I think Mike Masal is trying to push us a little bit on that or when Ku who wrote in from uh uh I believe Malaysia talking about you know how we balance uh hospital revenues with restarting the economy in terms of what the impact will be on children opening schools I mean it almost seems like bioethics doesn't have the language or the the appetite to take on uh the biggest issues and instead retreats to uh some relatively rare and a bit esoteric dilemmas so let me push back on that so I agree with you large extent but here's where I'm going to push back we should not have we should not need to medicalize poverty poverty is a huge social injustice if we're talking about bioethics clinical ethics I think we have to acknowledge that um many of the problems that we're dealing with are really huge social societal and belong outside of the clinical setting the fact that we have to have food repositories in our emergency rooms an absolute city-wide disgrace and so how would you respond to that because I think that's part of the the conflict here absolutely I would say that the issue is about building a comprehensive safety net for children that includes medical care and includes attention to schools and includes attention to racism and and justice and health disparities it's not just for kids but it certainly includes kids and kids are among the most vulnerable so finding the overlap between those domains I think is a proper role for pediatricians in bioethics the American Academy has had statements on poverty and on racism that highlight the role of pediatrician in addressing those issues right yes they're social not medical but they have a huge effect on health I know but what happens when you put everything into one bucket is and I'm going to push Megan on this right because the schools are not just about education they're about child care they're about feeding our children they're about providing mental health reproductive health care services and what happens when they close we really have harmed our children in so many ways in part because we don't have a huge social net instead we've either tried to bucket into schools or tried to bucket into bioethics and we're missing it this is a much bigger issue than what we're dealing with Megan you're up well I was just going to say so last year when I was talking about school-based health care I made the argument that had fundamentally altered the doctor-patient relationship because we had brought schools into the equation and we had for a large part actually taken parents out of the equation because everything happens in the school setting there's not often direct discussions between parents and providers at all in in kids are sort of not left with a connection to the community when they have additional needs and that was already a problem and now that it's become a huge problem because the the school community network that existed to address all of these health issues is largely gone at the moment and so you have you've almost have kids in a worst position because they don't their parents are not familiar how to access care in the community and it wasn't working well before and now it's really not working well because you've got a pandemic so I think I think the large ethics issue to me is from social justice standpoint how do we overhaul this system how do we build better engagement and bridges between educators and clinicians and we just we've never done that well before and now there really is an imperative to do it and do it well and everybody who hasn't watched Megan's talk in the McLean Center faculty seminar series ought to pull that up on YouTube and watch it since the work they're doing at Hopkins is quite inspiring thank you John so on that note which is a I would also just go ahead I put in a plug for what the eyes don't see the book by the pediatrician from Flint also has a beautiful vision of what this ought to ought to look like so on these positive notes sort of I want to remind everyone to stay on because we're going to go right into celebrating Mark Siegler and the winner of this year's well-deserved well-earned McLean Prize in clinical ethics so I'll pass it over to Dean Polanski and to Mark Siegler thank you