 Good morning. We are about to begin Saturday morning at the McLean Center conference on clinical medical ethics. I am delighted to welcome you to the fifth panel of the annual McLean Center conference. This panel is entitled Pediatrics and Family Ethics. It's my great honor to introduce this panel's moderator, Dr. Laney Ross. Laney Friedman Ross, MD, PhD, is the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics and Professor in the Departments of Pediatrics, Medicine, Surgery, and the University of Chicago College. Laney is also the co-director of the Institute for Translational Medicine and the Associate Director of the McLean Center for Clinical Medical Ethics here at the University. She is a practicing physician as a pediatrician and a member of the McLean Center at the University of Chicago since 1994. Laney's fifth book will be published later this month by Oxford University Press. That book is entitled Living Organ Donor as Patient Theory and Practice, and that fifth book was co-authored with Dr. Dick Thistlethwaite. Laney Ross is currently writing another book on siblings in health care, which is funded by a National Library of Medicine Award. Today, as I said, Dr. Laney Ross will talk about her sibling project and will also be the moderator for this panel on Pediatrics and Family Ethics. It's a pleasure to introduce you to Dr. Laney Ross. Thank you, Mark. I'm really delighted to be leading the panel on Pediatrics and Family Ethics, and I'm really excited for our first speaker, Dr. Rick Kodish. So Rick is a pediatric hematologist and professor of Pediatrics at the Lerner College of Medicine of Case Western Reserve University. He's vice chair for professional staff affairs and faculty development in the Pediatric Institute and program director for the Cleveland Clinic Fellowship in Pediatric Hematology and Oncology. He also co-directs the Art and Practice of Medicine course in the Lerner College of Medicine. Dr. Kodish is frequently invited to present lectures nationally and internationally on ethics, childhood cancer, and informed consent. He's the author of more than 100 peer-reviewed papers and journals including JAMA and the New England Journal of Medicine, as well as book chapters and reviews. He's the editor of Ethics and Research with Children at Case Based Approach, which had its first published in 2005 and the second edition in 2017. Dr. Kodish was elected as a fellow of the Hastings Center in 2013 and received the Distinguished Service Award from the Children's Oncology Group in 2005 and from the American Society for Bioethics and Humanities in 2016. We welcome you back, Rick. Thank you, and good morning everybody. Thank you, Lania, for that warm introduction. I'd like to just begin by mentioning that it's great to be here virtually, but I can't wait to be back together on the south side hopefully next year with good friends and colleagues. I'd like to thank Mark and the team, of course, for putting together the meeting and to offer my congratulations to Bernie Lowe on receiving this year's Very Well Deserved McLean Award. I'm going to talk this morning about Therapeutic Orphan Redux, Artificial Intelligence Research in Pediatrics, and this work is really a team effort. I'll give credit to those who deserve more credit than I at the end of the talk. Next slide, please. I do have a consulting, two consulting agreements to disclose, which you can read there and in my humble opinion are not relevant to this talk, but exposure is important. So there you go. The next slide, please. So this morning, I'd like to help us understand a bit of history that of children as therapeutic orphans and the risk, at least to assess a bit, the risk that history will repeat itself with regard to artificial intelligence and ML is machine learning. And to consider steps that we might take to decrease the risk of this happening again, while still minimizing research risk children, always an important principle of pediatric research ethics. Next slide, please. What is the Therapeutic Orphan? I'm going to tell this story in a dichotomous way, a little 20th century and then 21st century history. In the 20th century, I think the story begins with the sulfonamide elixir, which was a disaster in 1937. It was responsible for the death of more than 100 people in the early days of antibiotic formulation. And it turned out that diethylene glycol really made the taste of this medication quite palatable. But obviously, diethylene glycol is not good for you and 100 innocent people were killed at that point in the course of taking that medication. And then the thalidomide disaster in the 1950s, which is interesting because that happened primarily in Europe, some of the laws that were put into place after the sulfonamide disaster prevented harm, an epidemic really, a phocomelia to children because of the United States FDA approach to that. All of this came together in 1963 to result in what were called orphaning clauses in the package inserts of medications that were aimed to restrict or dissuade use of medications that were not properly studied in children. And this language really had a major impact on inhibiting the use of medicines in children. And moreover, the study of medication in children and Dr. Harry Scherke that same year in 1963 coined the phrase therapeutic orphan, point out the problem with this approach that children would indeed become therapeutic orphans. Next slide, please. We'll fast forward to the 21st century and my apologies for summarizing a really complex set of issues. But in my opinion, at least there's been progress in the 21st century, both with policy and legislation to ensure that children are not left behind when it comes to drug development. But it is still a work in progress. And we have a really interesting recent example for which I think it's actually kind of too early to write the history. And that's COVID vaccine development. A cynical take on this might be to say children are less important in society. They don't have money. They don't vote. And therefore, vaccine was not studied in children until later on. And as everyone knows, just recently approved in the 5 to 11 age range. However, there is a complex analysis here. There are public health benefits. This is a disease that while hundreds of children have died from it, it is not as severe as it is in adults. So we have an ongoing story about potential therapeutic orphanhood with COVID vaccine. That's the subject of another talk. Next slide. So what is artificial intelligence? A little primer. I am not a computer expert or a programmer at all. But I've learned that machine learning is one type of artificial intelligence. It utilizes complex algorithms to identify patterns in large data sets that imitate the way humans learn, gradually improving its accuracy. It's essentially a recursive phenomenon of the fact that I understand it. It's to be distinguished that as machine learning is different than deep learning, which requires even less human intervention. And as I understand, it is mapped on neural networks as sort of a paradigm. And if you want to learn more about this, IBM had a terrific explanation for lay people on its website. And I'll give you the link in a second to jot it down if you're interested. And we can go ahead to the next slide. So what are some artificial intelligence examples that don't involve healthcare? I was driving home from work a few days ago, listening to Spotify as I often do. And I heard a simple twist of fate, the classic song from Blood on the Tracks by Bob Dylan. But it wasn't Dylan playing it. It was Brian Ferry, the former lead singer of Raxi Music, much more upbeat version of it. I got home and looked at my Spotify and it turns out Brian Ferry came out with an album in 2007 called Dylan-esque, where he does all covers of Dylan songs. This is an example of Spotify getting to know me using artificial intelligence to put out there a song that I might like. And indeed I did. And I've noticed as I use Spotify that it gets better and better at predicting the kind of music that I would like. Or alternatively, it's shaping my brain, I suppose. But there's a man-machine interaction going on. Same thing applies to Netflix, self-driving cars use AI, the personalization of advertising online, fraud protection in banking and finance are utilizing AI. So I think all of this suggests that technology of AI is becoming ubiquitous and its use in medical research and in healthcare is inevitable. Next slide please. So as so often the case in medical ethics, science can get ahead of the reflective analysis that ought to be concomitant that is or potentially even, you know, before concomitant anticipatory, if you will. That analysis is important. And I feel like we haven't done this with regard to artificial intelligence in healthcare yet. Therapeutic orphan concerns are my interest in pediatric ethics appropriate for this panel. But certainly there are lots and lots of examples. Dr. Jordan Cohn, who has spoken at this conference before, gave a talk at the AAMC a few years ago asking whether doctors would still be necessary at all. And his conclusion is that people will always get sick. And for that reason, we will always need doctors essentially to accompany people on their illness journeys, sort of a more medical humanities, the soul of the doctor answer. And that was very reassuring to me because sometimes I do worry that we won't need doctors in the future. This is just, again, a little broader speculation on the ethical issues in artificial intelligence. Thank you for indulging me in that. And let's move on to the next slide and get back to children and the issues around artificial intelligence research in pediatric research ethics. This clip from the Wall Street Journal about six weeks ago mentioned that the FDA had approved an artificial intelligence software to spot prostate cancer. You're not going to be able to read it, Eric. You can maybe point to the area we had talked about. It's in the middle of the first column. But it says that there are, I think, 250,000 cases, thank you, of prostate cancer each year in the United States. Perfect. And just by contrast, there's about 6,000 cases of childhood cancer. That is all childhood cancer as opposed to this one diagnosis, a common adult cancer, which is prostate cancer. So that gives you an idea of the scope of epidemiology, cancer epidemiology, and why the FDA is authorizing AI software for pathology of prostate cancer. Also, interestingly in this paper, and you can't see this, it's cut off, about $220 million in venture capital investment has been made by the company that has produced this now FDA approved software that uses AI to detect prostate cancer. Next slide, please. So some data here earlier this year, our team looked at clinicaltrials.gov and found 864 clinical trials using AI or ML. 20% of those included children, but only 20 of them, which actually there's a type of there. It's 2% of the 864 are studying pediatric specific problems. So what are the risks? The risks in my mind are that low enrollment of children could lead to post-hoke exclusion from analysis and or the development of models that make inaccurate predictions that could cause harm to children. Next slide, please. This will show you a little bit of the second category, both in nephrology and in hematology. We know that children have lower BUN and creatinine levels than adults. So using models that are not adjusted would create the situation where kidney disease and children would be missed. And in hematology, my own field, we know that there are different normal values for all three cell lines that vary to some extent with age. And the same thing is true for hemostasis and thrombosis lab measurements. So using adult values would risk missing things for children. The next slide. Another way to say that, I guess, statistician once mentioned to me, garbage in, garbage out. So we need to make sure we're not putting garbage into the models so that we don't get garbage out. Algorithms need big data. And there are lots of adult examples of big data. The cancer atlas, there's the thousand genomes, all of us project. There's a paucity of big data sets in pediatrics. And I want to mention here two different kinds of big data that we might think about. One is biologic data, which is omics. Another is clinical data sets from the EMR. And EMR also raises lots of concerns about garbage in, garbage out. I'm sure many of you who are practicing clinicians have seen many, many errors in the EMR. Again, that applies not just to pediatrics, but to all artificial intelligence that might rely on the EMR. Next slide, please. So about a quarter of the US population is under the age of 18. We know that children are less likely to be hospitalized, which is the place where data is most easily captured in the EMR. And there's a whole issue of the failure of the National Children's Study, which was launched, I think, about 20 years ago and basically just was a failure. We could be in a situation where we had a lot of pediatric data and we're not. Also, the topic of another session, but that's one reason maybe the children will be excluded. Next slide. Most importantly, I think, is economic drivers. We all know Sutton's law. When he was asked why he robbed banks, he said that's where the money is. And I think the same thing is true for pediatric research on artificial intelligence. We learned that from the drug situation. The economic incentives have changed in the 21st century. So how might we change that in pediatrics? Next slide, please. We can anticipate and prevent reactive legislation. In some sense, what happened in the 20th century was reactive legislation. It was good that there was no Focomelia epidemic because of polytomide, but that reaction went too far. So I think we should be vigilant to be sure that children are not excluded from AI research. We can use both carrots and sticks to try to provide economic incentives to study AI and children and its application in healthcare. And I think we need advocacy from organizations that care about children and their health. The Academy of Pediatrics Society for Pediatric Research, National Association for Children's Hospitals and Related Institutions, these organizations I hope will step up and advocate for this. Next slide, please. Cross-training with pediatrics residency would be another solution followed by medical informatic fellowships. And this is just a quick tribute to Mark. Mark excited two generations now I think of people about clinical medical ethics. We need people like Mark who are going to excite pediatric investigators and give them a career path with sustainable funding and mentorship, importantly. Next slide. What are the risks to children? This is where we go back to privacy and confidentiality. Always a bit hard for me to remember the difference between those. So I put them there for you. I think there can be legitimate concerns about confidentiality breaches. Both concepts could be relevant here. But I think the risk is more a risk of wronging children than it is tangibly harming children. And I think that's meaningful here. So the next slide. I think if, and this is a term of art in pediatric research ethics, minimal risk, if we conclude that the risk of harm to any individual child is minimal risk, it certainly would favor the balance to a more robust research program in artificial intelligence for children's health care. And in general, I think the risk of wronging any individual child is of less concern than actually harming them. That's not to say that we should accept the wronging of children by any means. But as we analyze this, I think we need to be pretty supportive of doing more AI and ML research in children. Next slide, please. Many of you have heard this. I think it's quite salient here. Those who cannot remember the past are condemned to repeat it. And my pitch here is that we should remember the past about therapeutic orphanhood and avoid therapeutic orphan redux so that children benefit from AI and all that it might bring. Next slide, please. Would not be fair if I didn't thank Matt Nagy, who is a spectacular future star in pediatric ethics. A fourth year medical student who did most of this work as first author. Also my colleagues at Washington University, Brian Siss and Albert Lai, who contributed significantly to this work. It was a team effort. I want to thank for listening. I want to apologize that I have a conflict and will not be able to be on the panel, but I do know it will be a great discussion and I will watch it because I know it will be available after the conference. And my email is listed here. If anyone has thoughts, feedback about this talk, ideas, I ask you please to jot down my email and shoot me an email. I look forward to hearing from you again. Thank you so much, Mark and the McLean team. And I will wrap it up. Thank you, Laney. Thank you, Rick. That was a great talk. And again, for those who have questions, please contact Rick directly as he will not be on the panel. So thank you. I'll be the next speaker. Thank you, Mark, for that generous introduction at the beginning. So I will just continue on. And my topic is, am I my brother's keeper looking at the issue of sibling ethics? Okay. So just again, disclosures. I own stock in Bristol Meyers Squibb and General Electric. I will not be discussing any drugs or off-label uses. So I want to just give a little bit of history about this project. It actually began 25 years ago when I was almost funded by the Green Wall Foundation to host an interdisciplinary conference on siblings and their interactions with health care. And it was going to look at questions from transplanted genetics to caregiving and caretaking. Bill Stubing had promised me, he said it was a very contentious decision not to fund. And he didn't want to talk about it that year. And he promised that he would tell me about it. And every few years when we'd run into each other at conferences, he looked at me and said, still not ready to talk about it. I miss you, Bill. And I guess I'll never know why this plan was cut short. Sibling ethics, though, has been relatively ignored in philosophy and medical ethics literature. And it made me realize that I was still going to have to pursue this project. So the reason is the Sibling ethics has been relatively ignored in the philosophy of medical ethics literature in part because philosophers like to talk about voluntary relationships. And siblings are an involuntary relationship. There are ways that we can think about it from a philosophy perspective. We can think about ethics literature on partiality and intimacy. So partiality is when you're talking about why we favor some groups, rather than taking a more global perspective. And clearly the argument here would be based on intimacy. But that doesn't really help us distinguish between friends and siblings. And so one question is, are siblings different than friends? And if so, why? And some of it may be about the longitudinal relationship, although for some of us who have childhood friends, that might not be the case. And so we need to think, is there something different? Is it based on genetic relationships? Well, some of us don't even have genetic relationships with our siblings. So it's not exactly clear how to distinguish siblings from friends. There is a whole social science literature also on kinship. But often when they talk about kinship, they're often talking about parents and child and not usually about the horizontal relationship between siblings. And so over the years, I've come to realize that one of the mistakes in my project from 1996 is that I was really trying to understand the sibling relationship between siblings and not looking at siblings as members of families. And I was looking at them as an isolated relationship, but I realized that we must take them within the social context in which they occur. And this parallels the realization of medical ethics, in a sense, that individuals cannot be looked at as isolated autonomous agents, but rather the doctor-patient relationship must be understood within the larger context. Patients often come with their spouses, their children, their loved ones. Doctors often come with the whole medical team. And so this notion of this isolated doctor-patient, or one sibling to another sibling, is sort of not a rich way of thinking about relationships. And so I realized I need to have a framework for thinking about siblings and sibling obligations because in healthcare, because as healthcare professionals, we ask, expect, even assume so much of and about them. So think about when we find an individual middle-aged man who comes in and there's no relatives. The first thing we do is we try to find relatives who are often looking for siblings. If you have a genetic result, you often will counsel a patient about telling their siblings who might be at greatest risk. If an individual comes in with kidney failure, the healthcare team may look to them and say, we need to find you a living donor and your best luck would be someone who would match you, would be a sibling. And so there's so many places, and then of course, when an individual, for example, comes in the hospital and leaves quite weak and needs caregiving, people often look to the family and that often involves siblings, particularly as we age. And so it becomes an interesting issue that we depend so much on siblings in healthcare. And yet we haven't figured out why we think more about siblings than we do about friends. Yesterday, as we were talking about decision making and about surrogacy ladders, for example, siblings are much higher than friends. And so we need to understand why we think that is the case. And so as I said, those are some of the examples that got me realizing that we need to have a way for doctors to be able to think about why we depend so heavily on siblings. And so I appreciate the National Library of Medicine giving me a three-year grant to think about this project in detail. My thoughts, though, are still preliminary and love to hear your feedback. So the thing is, is that when we talk about siblings, we have to realize that they come in all shapes and sizes, as well as in all degrees of biological relatedness, right? So we can have full siblings, meaning that we share the same two parents. In fact, we could even be twins and we can be identical and share literally 100% of our genetics, or we could be fraternal twins. We also, siblings can share genders, or they can be of different genders, and they can be within one year of each other, but they can also be 20 years apart. So they come in quite different ways. And then we can talk about half siblings, where we have one of the same parents. And this may be due to divorce or death, but it also may be due to parents, single parents having children, even using artificial insemination, for example. Again, with half siblings, we have issues of gender and age separation, and we may or not have even emotional relationships with them, because they may be being raised in different parts of the country, if not the world. Then we can have step siblings, where there is no biological relationship. Again, this may be due to divorce or death. Again, there may be issues of gender and age separation. And again, you may or may not have emotional relationships. And then there are adopted siblings, where there may be family, it may be a family adoption, so you may actually be related to your siblings because of biology, by biology or by genetics, you're actually nieces and nephews. You may be non-related biologically, it may be an open or a closed adoption. So in other words, siblings come from incredibly diverse different pathways to becoming siblings. And as I said, one of the interesting things about all of this is we don't choose our siblings. So one question then to think about as I'm working on this book is, who are the siblings? And so are these individual siblings? So children who share the same genetic parent are relinquished at birth to be raised by different parents. And so they may not actually know that they exist to each other. This has become sort of every week you read some popular magazine or newspaper article of siblings who found each other or they went on ancestry.com and found out that they had siblings and things of that sort. But in my mind, this is not the type of sibling I'm talking about. For my project, I want to be talking about siblings who have an emotional relationship. Less interested or less important is the genetic. It may be for certain areas, for example, genetic testing or even transplant. But overall, the issue for me is much more about the intimacy between siblings. You could imagine individuals whose mothers selected the same sperm donor knowingly or unknowingly. Are they siblings? And again, for this, if there's no emotional relationship, they are not siblings from my perspective. And then how about children raised in the same household but who are in a sense being raised by different parents? And this was actually an article that just was in The New York Times about three weeks ago of an article about does co-housing provide a path to happiness for modern parents? So talking about the difficulties of being a single parent, particularly when there's an emergency and things of that sort and so how family at these groups of single parents are living in a common structure in order to be able to help each other out. Or you could imagine more formally in like a kibbutz-like setting, does that make the children in a sense siblings? And I'm going to suggest for my project, these are not the groups that I'm considering siblings. So then we have to say sibling relationships. Are they based on nature or nurture? And so here I'd like to talk about the relevance of the biological and here we can talk about it's important in the area of genetic testing or an organ and tissue transplantation. But we also have to talk about the relevance of emotional intimacy. Actually, Eric, if you could get rid of my picture so to make the slides a little bit bigger. Thank you. The relevance of emotional intimacy and here we could be again about being reared together or apart. We can talk about the quality of our interactions. We can talk about the evolution of the relationship over the lifespan. So it's one thing when you're living together as you're being reared by your parent or parents and then as you grow up and you move apart or you develop different interests, how does that impact on the sibling relationship and how much do you have an obligation in some ways to go back to your childhood? And then of course there's parental interaction and parental expectation and pressures and that parents may be conflicted when their children's needs change or even clash and how the sibling relationship is impacted when one sibling is sick or even disabled. We also always hear stories about the favorite child, the black sheep child. And then of course we get into obligations when siblings grow up and have their own families. What are their obligations to their family of origin versus their family of choice in the adult siblings? And for the purpose of my project, as they said, I'm going to focus on siblings who share at least one parent emotionally, not necessarily biologically and have or expect to have a sibling-like relationship that persists over time. So for the purpose of my book, children who are adopted out of a family are not siblings. Children of sperm donors in different families are again, regardless of shared genes, are not siblings. And children raised in the same household are not siblings, even if they themselves see themselves as sictive kin. I'm looking for a much more of an intimate family without regards to the genetics. And so then comes the question of do children, particularly child siblings, have moral obligations to each other? Now minors, particularly young children, are not moral agents and therefore have no moral obligations. And that's from the position of Paul Ramsey. McCormick might argue that children have moral obligations from a national law perspective in a sense what you would do if you truly could look back and make those types of decisions. But regardless, the parents are moral agents and they are morally responsible for their children. So they can insist, even authorize, for example, that one child help another to benefit the family provided that it does not significantly harm the child's basic interests. And this is true both in the healthcare, where parents may authorize one child to be a bone marrow donor, but it's also in other areas where parents may be putting lots of resources into one child to become a famous tennis star and the other child is dragged along to all those events. However, in the healthcare world, healthcare providers are moral agents as well and must decide whether they ought to help parents achieve their goals. And then we still have to decide, though, whether older children and adult siblings have moral obligations to each other. So in a sense, what I'm arguing is that while child siblings may not have moral obligations because of our notion that children don't have full moral obligations, what happens as we age when we become adults to what extent do we have to think about our obligations to our siblings? So do adults have it? And the answer is either no, yes or sometimes. So the arguments against adult siblings having moral obligation is that it's a non-voluntary relationship. I didn't ask to have this sibling, so why am I being given these moral obligations? The answer for yes would be on what grounds? Is it based on biology, emotional intimacy, or family benefits? That is, that did more than just the sibling benefit. And I would argue that neither of these are sort of the right answer. I think the best answer might be sometimes. But then we have to ask what is the basis for these obligations and what are the limits? And do our obligations change as we age and our relationships evolve? And then how can you write a whole theory about it? So as you can see, I'm stressing in this project because I haven't been able to get sort of my hand around what is the nugget of a sibling relationship? It is so important, it's some of the most important relationships that we have from a social perspective. When we look at our religious traditions, siblings are prominent in the Bible. They're actually pretty dysfunctional, but they are prominent in our religious traditions. And so then I have to say then what would be the basis for our moral obligations to our siblings? And is it just family obligations? Because in family obligations, we have that thousands of voluntary parent to child relationship, hopefully and usually of voluntarily parents having children. And children may actually have an obligation of gratitude to their parent, but that doesn't explain the sibling, which is non voluntary. And so do they have obligations to each other out of deference to their parents? Do they have obligations to each other for family benefits? Do siblings have obligations to each other just based on proximity? And then that of course gets to the point of when they're raised 15 years apart, for example, by the time one becomes old enough to have a real relationship, the other may be out of the house. Is this what we call in philosophy a status-based obligation that families just generate member obligations? Is it based on shared genetics, which may be relevant in some situations, but not in many others? And is it based just on shared intimacy? Which is where I think we want to be putting a lot of the importance on the sibling relationship. There's a shared childhood, there's an intimate longitudinal relationship, there's a degree of friendship and emotional closeness. And again, though, I acknowledge that this may not be relevant in all families for all siblings. And then how to deal with that? And then I ask myself, can anyone else help? So for example, in the traditional case in the first living kidney donor transplantation, Herrick was basically told, you are the only person in the world as an identical twin who can save your brother because we have no immunosuppression and you're the only chance for a living donor. Does that place an obligation or is that almost too coercive of an obligation? And finally, as we try to understand our moral obligation, we need to think about cultural norms. And is there a moral underpinning or is it just communal tradition? So lots of different case scenarios that I'm thinking about from my book, I'm just going to run through them. The first, though, is that siblings are playing and one falls into a well. Now, the fact is that the other sibling has an obligation, but so does any stranger. If there's an easy duty to rescue if it entails minimal risk. So that doesn't really help us. But how about the individual diagnosed with an autosomal dominant genetic mutation that causes cancer? Here, again, this is based on the duty to inform. And if I refuse to disclose, then we get into the question of can my physician disclose without my permission? Or what is my in a sense, my relationship with privacy, even though I am a sibling? Then in case three, we have the obligation to participate in minimal risk for my siblings. Given the time, I'm just going to skip some of the details of all the different cases that I'm examining. The fourth case I'm looking at is sibling is stem cell donor for a sibling with leukemia, which I've already mentioned. But I do want to point out that there are some significant risks when we talk about even a stem cell and not even a solid organ donor, the psychological risks here are really great. And I would have loved to have had Rick on the panel to discuss some of these risks. And then finally, I'm going to skip through, as I said, these details. We have the sibling as kidney donor. So what I've been trying to do is I look through some of these examples going from the minimal risk of to the more significant risk of sibling is kidney donor. But I also want to point out that we often ask siblings to serve as healthcare decision makers, they are highest higher on the ladder than many other relationships that we have. And then again, finally, as I've mentioned already about caregiving. The last one may be the most controversial about sibling obligations to help each other with respect to reproductive, whether it's about carrier testing, whether it's about gamete donation, and even about surrogate wounds and uterine transplantation. And so to think about this is if there are moral obligations, what are the limits and what are the role of other family members? And is family destiny or do the same rules really apply for friends and neighbors? And how am I going to find that nugget that teases out the sibling from the rest of the family? And then I have to put that sibling relationship in context with the role of the healthcare team. And whether healthcare teams solicit help from family members is morally appropriate? Or do we need actually independent advocates for family members who may be asked to help? Even if we don't have moral obligations to our siblings in the strict content sense of having a perfect duty, can we still be morally obligated to help them on the grounds that we owe it to our parents? We owe it to the family unit? Do children actually have moral obligations to their parents? At least there's a rich philosophy literature that I can look to, although it is on both sides of the story. And how then to translate that into siblings, I'm still trying to figure out. So with that, I just want to conclude that sibling relationships must be examined as a non voluntary peer relationship in the lived context of interrelatedness or not and intimacy or not over time or not. That sibling relationships must be understood within the larger family context and within the largest societal context. Siblings may have moral obligations based on intimacy with each other and with the family as a whole. When genetics is relevant, they may be clinical relationships to call on siblings rather than other intimates. But the moral duty stems from intimacy and not biology. And so how does that relationship cause so much of this dependency of moral obligations? So I do want to acknowledge that the sibling obligations may be defeasible, and that again is going to create lots of difficulties for me to come up with a coherent theory. And the answer is it may need to be multiple frameworks for thinking about siblings in the context of health care. So thank you very much. I look forward to comments during the panel discussion. So I now want to move over to our next speaker, one of my dear colleagues, Dr. Sarah Hone, a board certified in pediatric critical care medicine, pediatrics and pediatric hospice and palliative care medicine at the University of Chicago Coma Children's Hospital. She's the director of the pediatric supportive care team program, which encompasses pain, palliative care and integrative medicine. She's also an associate director of the McLean Center for Clinical Medical Ethics, and she co-directs the ethics consultation program for the hospital. In addition, she is an assistant program director of the pediatrics residency for well-being and resilience. Her research interests include studying the impact of standard triggers for palliative care consultation, addressing health care disparities in palliative care, and studying burnout among trainees and attending. She's involved in addressing food insecurity at a local level by managing community freak. Her passion is to encourage patients, families, and health care workers to find joy amidst difficult circumstances. She also runs our clinical ethics consultation service and brings some wonderful cases to us. Sarah, Flora is yours. Thank you very much. I hope you can hear me. Hopefully you can see my slide soon. Thank you to Dr. Siegler and the McLean Center for Clinical Medical Ethics for this opportunity to talk to everybody. I need to publicly thank my friend and colleague Karen Feldman, both for collaborating on the slides with me and allowing me to sit in her house up north while my daughter is taking an exam nearby and giving me a safe place to stay with Wi-Fi. So I want to thank her for that. What I am going to talk about today is why the individual provider approach to pediatric palliative care consultation can exacerbate health care disparities. I'm going to talk both about some cases and some data, and I'll be going back and forth between some Comer data and then some national data. I have a picture of sunflowers there because I was raised in Kansas, and not everybody realizes that the sunflower is the Kansas State flower. And if you say, gosh, how is this relevant to today, November 2021? It's only relevant because everyone in Kansas, and Dr. Lantos probably knows this as well, that Paul Rudd was named the sexiest man of the year by People Magazine. And so everyone in Kansas is celebrating this and fun, random, non-ethics facts. I used to live across the street from Paul Rudd when I was five years old. And his mother is actually famous throughout Kansas City because of her voice. And she used to do all these commercials for hot tubs. So there you go. That little bit of joy that I brought you is that one point that you're now going to get on a trivial pursuit game. So I have no disclosures whatsoever. I am a big proponent of palliative care, and I absolutely view both the cases and the data through a view of positive perceptions of palliative care. So what are we going to talk about? I'm going to first go through what the literature shows us in particular in the neonatal ICU and then talk a little bit about what the national recommendations are, what our colmar experience is, and then share with you a case that we recently had that involved both the NICU and the PICU. I'm then going to talk about some data that we have on a national level about palliative care consultation in this setting of bone marrow transplantation. And then I'm going to finish by talking about our pilot project where we have integrated palliative care into the outpatient oncology clinic and why we think that is successful and why we think that should be a model moving forward. So what's the current state of affairs with palliative care? Sadly, it really is the elephant in the room. People think that we're promoting death. People think that we're the grim reaper. People think that we want to stop all the machines. And sometimes healthcare providers think that we have some magical little DNR button that we can come in and make a family change their mind, which we cannot do that. I think people often call both ethics and palliative care because they think that we can change people's minds and we can't. When I think about what is the most simple way to explain pediatric palliative care, it's really that you want to bring joy to difficult conversations and you want to bring joy to difficult situations. And this might seem really, really challenging, but a lot of it's just celebrating really small victories. And we're rarely going to change the outcome, but we hopefully will very often change the process. And I think by changing the process, you've helped that family forever in terms of how they look back on this and how they reflect on that experience. So what do I think is the best encompassing quote about palliative care? Maya Angelou once said, people will forget what you said, people will forget what you did, but people will never forget how you made them feel. And I really think that Maya Angelou encompasses what the goal of palliative care is better than any other person. So what do we know about the use of automatic triggers? We know that in 2021, everything's about algorithms and protocols. If you go on to the system at Epic, it's going to give you a little alert to go to your agile pathway to make sure that you're following everything on a protocol. So we know that a lot of medicine these days is protocol driven because it's been demonstrated across medicine to improve outcomes. So a few different people have done research studies looking at automatic triggers for pediatric palliative care consultation within different neonatal ICUs. This was work that was done at St. Christopher's Hospital in Philadelphia. And they came up with very specific criteria and they improved the consultation in these patients from 26% to 46%. You can't see that, maybe Eric, if we could make that full slide. What you can see is that they used a wide range of different organ systems. So they looked at extreme prematurity, they looked at heart problems, neurological problems, kidney problems, and those were the systems that they targeted for their automatic triggers for palliative care consultation. And this was published in 2018 in the Journal of Perinatology. And then other people have looked at this more recently. This was at Nationwide Children's Hospital in Washington, D.C. And then they looked at trigger criteria to increase appropriate palliative care consultation. And this was published in the Quality and Safety Journal. And they found that they increased their consultation rate from 25% to 80%. What was interesting about this is they used a very specific diagnostic list. Eric, maybe if we could make this one big also. So you can see that they started with a really wide a range of things. But in the end, they really only had five. And I would argue that most NICUs across the country have been consulting palliative care for the list on the right, which is what they ended with, which are the children with Trisomy 13, 18, and the kids with profound renal failure when they're born and Anne and Cephalie. And so I applaud the authors for trying to be rigorous about this. But I think this was far too narrow-minded. And I think that they came up with good compliance because their list was far too narrow. So what has been our experience at Comer? If you remember that last slide, the five diagnoses on the right, we've been consulting on those patients forever. The NICUs been, we've done a really good job integrating us for in the fetal center for the kids with Trisomy 13 and Trisomy 18. And so I think those five diagnoses we've always been involved in. But what about everybody else? So in the last year and a half, there's been more sort of collaboration between the neonatal ICU and the pediatric ICU. And one of the things that started happening is we started getting pediatric palliative care consultation on the children who were on what we call the launching pad to move upstairs for better or for worse. So the kiddos that were really sick and really big, but were sort of outlasting their stay in the neonatal ICU and more appropriate to be cared for in a pediatric ICU. So these are the sickest babies with BPD who weren't able to transition to another place and then go to the pediatric ICU. So we've been following several of these babies over time. And I must say, when it was first presented to our team, we thought, I'm not sure we have anything to add for those babies. But I think it just gives a longitudinal perspective. And again, it gives us an opportunity to say, Hey, what can we do to sort of bring joy to this situation? So now I'm going to tell you about a case study that yes, I absolutely have the mother's permission to share. And this was an x 23 week premature infant. He had severe lung disease and stage respiratory failure on very, very high settings. He was on multiple sedative agents. He was on neuromuscular blockade. He eventually came to the pediatric ICU. The mom had always said, you know, I want everything done always and forever, all of the things that is what I want. And over time, we were able to work with her to get her to agree to DNR status. And he think it was partly because we could say to her, you know, no, we haven't known him since he was born, but we've been following him since the spring. So we've gotten to know him over the last six months. And when we sat and we talked and we said, you know, what, what do you want? What do you want for him? Like you want him to live, everybody wants everybody to live as long as possible. We totally understand that. But what are the life experiences you want him to have? And that was sort of a different way of thinking about it. And so what she wanted was she wanted him to have a wonderful birthday party. His first birthday was coming up. And she wanted him to go outside. Both his primary and NICU nurse said that he loved fans and he loved air. And so what they really wanted was for him to go outside. So that is on his birthday party. We had a birthday party in the pediatric ICU. And his mom and his sisters talking about Dr. Ross and the role of siblings, they felt so much joy. They felt so excited and so happy. And there he is in the middle with his little tuxedo that he wore on his first birthday and wearing his tux in his crown. He went outside and he felt fresh air for the first time. And the mom was so happy. And I think it gave her sort of the acceptance and the closure that she needed to move on. She also sent me this and asked me to share this with you, which shows at his different stages. He did ultimately pass away a couple of weeks after his birthday. And she was so relieved and so grateful that they had that time together. And she really felt like, hey, that was his bucket list. And we talk a lot in adult medicine about the bucket list, but we tend not to do a very good job incorporating that in pediatrics. So what about beyond the neonatal ICU? Anyone who's ever been to a pediatric ICU knows that oftentimes the sickest kiddos in the pediatric ICU are those with hematological malignancies that have undergone bone marrow transplantation and are often on high ventilator settings, dialysis, all of the things. And so we wanted to see what were the rates of pediatric palliative care consultation in that population. And part of the reason we wanted to do this is because we know that children who are racial and ethnic minorities have much higher mortality when they're admitted to the pediatric ICU. We also know this is a different study that shows that they have not just differences in outcome in their oncological diagnosis, but differences in their outcome when they're admitted to the pediatric ICU. And so there've been multiple studies. Eric, maybe if we could make this one slide big, that would be helpful. Thank you. And this is consistent with other studies that have shown that both the intensity of end-of-life care and the location of end-of-life care is very different. But in particular, the study from 2020 in pediatric critical care medicine really talked about the higher mortality despite all the levels of technology. And so we did a study looking at national data, looking at discharge data through the FIS database. Our hypothesis was that those that are racial and ethnic minorities would be less likely to get inpatient palliative care consultation. And Eric, why don't we leave all the slides big maybe for the next five or six slides? Because it'll be hard to see the tables without them. Thank you. And so we looked at ICD-10 codes. So we looked at the hospital admission in which they received their bone marrow transplantation. And then we looked at patient data and acuity data. And what we found was that there were differences in race and ethnicity based on who got a pediatric inpatient palliative care consultation. And that when we further analyzed this, this was true despite whether or not they were headed, the indication for their transplant was a cancer diagnosis such as leukemia versus whether or not it was for an immunodeficiency. And we found that there were high acuity indicators. So people who had ICU admission, people who had mechanical ventilation, people who died and people had a longer length of stay. So those were the clinical conditions that were markers of palliative care consultation. And that makes sense. But what we found is that those differences persisted even when we controlled for acuity. In particular, people who were Latinx, so people who identified as Hispanic and Latino were half as likely to get pediatric palliative care consultation despite controlling for length of stay, mechanical ventilation and acuity of illness. So what do we think this means? We need to be aware that Latinx pediatric stem cell patients are half as likely to get inpatient pediatric palliative care consultation. We know that there's multiple factors that go along with this, including language barriers, implicit bias, mistrust, and then cultural and spiritual preferences. In terms of the language issues, a lot of the hospitals across the country, even before the pandemic, had really moved towards using video interpreters instead of in-person interpreters. And I really think we're doing our family's disservice because they're not getting the same level of interpretation. Although I must say I have to give a shout out to the random human who was this Spanish interpreter for a family meeting we did a couple of weeks ago on the iPad. And the interpreter was like, can we have a time out? And the interpreter actually was like, I feel like there's two different conversations going on and I'm concerned that the father doesn't understand that his child is dying. And that was shared with this from the Spanish interpreter on the iPad. So they're incredible, incredible dedicated professionals who take their lives very seriously. And I think in future work, I would love to study the moral distress among interpreters because they have to say the hardest words and we don't give them very support, nor do we give a lot of avenues for interpreters to share all the conversations that they're having. But how this is relevant is that we know patients who are non-English speaking are less likely to get the same level of care and they're less likely to get pediatric palliative care consultation. So we do think this is something we should be mindful of. This is another study that shows that patients who are Latinx have that you can mitigate this difference when you do a multi level healthcare intervention which looked at aggressive integration of interpreters. And with aggressive integration of interpreters, they found that you could mitigate some of these disparities. So I bring this all up because I think that although we could not in the discharge database account for level English proficiency and limited English proficiency, I think language is going to be one of the keys to mitigating our disparities moving forward and close attention to making sure everybody's understanding that. And so this was a study that we did at St. Christopher's Hospital looking at language and outcomes in an emergency room and we found that people who were non-English speakers were much less likely to get an intervention. They were less likely to get at medicine and they were less likely to get admitted to the hospital. So how and when do we address palliative care in a consistent fashion? So I would tell you the way to do this is to do it in the beginning. And in the beginning means in clinics, the variety of the healthiest cancer patients are getting all of their treatment in clinics. And so we need to have palliative care go into the clinics. And I'm just going to give you the thousand foot view of this study because I know that I have one minute left. But essentially we picked the AYA population. So we embedded palliative care essentially me in the clinic with patients who have adolescents and young adults with leukemia because of both the concerns of mental health and physical symptoms that patients face in this time period. And we know that in adults early integration of palliative care is standard. And so we know that there were different ways to get palliative care involved. So one of it were people in the study and then the other ones were people who had a high symptom burden. And essentially we would do a clinic huddle and they would tell me who they wanted me to see. And so what we found was that this was feasible. It could be done. And then the second phase of this study was to say, what did the patients think about this? Did they think that we were rushing people off to hospice? And long story short, no, they did not. So in general when we looked at this, I'm going through the symptom screeners. But overall what we found was that it was positively received to have palliative care in the clinic in the beginning. So that is certainly what we think the model should be moving forward. And I'm going to go through these. Hopefully we'll be able to make all these slides available to you after the fact. And so what do we think? We think palliative care should be integrated in the beginning along with continuum of care. So whether that's in clinic, whether that's in the neonatal ICU, whether that's Lara Vita, we think that early integration of palliative care is feasible and well received. And we do think that that combined with really close attention to language of origin can help us mitigate some of the healthcare disparities. So I am super grateful to Dr. Ross and Dr. Siegler from the McLean Center, in particular Dr. Ross with all of her help with all of these projects over time with Prime and all of the scholarship feedback that we get. We have a team of people, both all the collaborators within the HEMOC clinic, everybody in the SRP. I've had two different students do this work. So I'm grateful for everybody. We just want to be there. That's all we want. Yes, I'm a little bit obsessed with animal pictures. And I think that is all we have one minute and 12 seconds over. My apologies. Thank you for this opportunity. I really appreciate it. Thank you, Sarah. And thank you for all the work that you do. I just want to remind everyone that please be asking questions in the chat. And if there are certain questions that are of most interest to you, you're supposed to click on it so they get up made more important until they'll be entered in our panel discussion. I now have the privilege of introducing Dr. Katherine Hunter, the chief of pediatric surgery at Oklahoma Children's Hospital of the University of Oklahoma. Her clinical interests include general neonatal and pediatric surgery and surgical correction of chest wall deformities. She completed her fellowship in clinical medical ethics at the McLean Center in 2018. Dr. Hunter is a surgeon scientist and she has received several intra and extramural grants and awards, including funding from the National Institute of Health, the American Pediatric Surgical Association, the American Gastroenterological Association, and the American College of Surgeons. She has published over 70 peer reviewed manuscripts. Dr. Hunter is a member of many academic societies, ACS, SIS, SUS, AWS, and APSA, and serves on multiple national committees. Welcome back, Dr. Hunter. Thank you so much. It really is a privilege to be able to speak today and I really enjoyed the talks that we've had so far. So all right, my topic for today is going to be navigating difficult decisions in pediatric surgery. I have no relevant disclosures. The learning objectives for today's talk are to identify difficult decisions that may be encountered in the surgical care of our pediatric patients. And I also want to take some time to discuss some of the strategies to navigate provider-provider-provider parental conflict within the framework of ethics as well as pediatric surgery. So our pediatric patient population are certainly very, very diverse. There's a diversity of age, developmental staging, as well as the ability to participate in their own health care decisions. When we talk about a pediatric patient, we're talking about everybody from the neonates all the way up to the late teen. And the ethical issues and the considerations around the care of each of these patients is unique and quite different. So this does create some difficulty at times. We also have to deal with the caregiver. The caregiver in its best case is a very motivated health care proxy. But at times it's not that straightforward. We don't always deal with the perfect family unit. Sometimes we're dealing with broken families. Sometimes there may be an absent family member. And then unfortunately, sometimes, particularly for pediatric trauma, sometimes the perpetrator of the injury to the child is actually one of the family members. And this can certainly create issues. The setting in which a lot of the care in pediatric surgery takes place also may be an environment that promotes conflict or difficulty. We can have difficulty just because oftentimes as a pediatric surgeon, we're not necessarily the primary team for some of our patients. So there can be numerous specialties that are actually involved in the care of a complicated medical case in a pediatric patient. We also within a health care sitting have providers that are at different levels of expertise or training. So higher RP comes into play. And most of the settings, as I said, that we work in include things like the intensive care unit as well as the operating room. And these are classically thought of as more high acuity situations which are recognized to be areas in which conflict is perhaps a little bit more rife. So in order to kind of go through some of the topics and meet our learning objectives for today, I decided that the best course of action would be to select a series of case examples. This was actually hard because there's so many different cases and so many different nuances. I hope that the three that I've selected will be enlightening and generate some good discussion. In the first case, this is a case that I was involved in when I was up at Northwestern. It's a case of an infant born with trisomy 21 and a tracheolosophageal fistula. This is very similar in many ways to that classic case I believe from the 1960s of the duodenal atresia at John Hopkins. So listen and we'll go from there. There was a newborn baby girl. She was born to a family who already had two other healthy children. The diagnosis of tracheolosophageal fistula as well as trisomy 21 were surprised to this family. We only identified either of these medical diagnoses after the time of delivery. The medical team and the surgeons agreed and recommended a repair. However, the family absolutely refused any surgical intervention, including a G tube and went further than that requested that there be no TPN or parental nutrition provided to the child. A tracheolosophageal fistula is a relatively common diagnosis, certainly something that is very treatable in this day and age. It does require a surgery, typically a thoracotomy, and the idea is that we put the ends together. This diagram at the bottom of the picture, you can see the five classic types. This baby most likely had the second along there, which is listed as B. So not the most challenging case for somebody with training. And certainly, once it's connected, the anticipated outcome would be that the infant would be able to take food and grow and generally do quite well. This was very shocking to a lot of us. This was shocking to our neonatology colleagues, to the nurses, as well as to the surgeons. And it really was a source of great moral distress. We also felt really angry. We were angry at the parents that they would not want to let us take care of their child. We were frustrated. We felt that we were explaining very clearly that this was just a plumbing issue and we could put them back together. And what we noticed was that the family also, the mother and father, really withdrew and almost hid from the clinical setting. However, you have to remember this when we're considering things. This is a quote from Roy Eddall. Ethical dilemmas will be misconstrued. If the clinical situation is not understood in all its subtle medical and human complexity, the maximum method in clinical ethics is each case contains its own resolution. Understand the patient, and in this case, also the family, body and biography as comprehensively as possible. And the balance of elements required to resolve an ethical uncertainty, conflict or dilemma will emerge. So that was when we had to step back. We try and adhere to the key ethical principles. So beneficence, we really wanted to make sure that this family really did understand the core goal of the providers. So this is an opportunity to really sit down not just with the same provider, the same providers, but really make sure that we're explaining what we perceive as the medical facts clearly in a way that can be understood. Maleficence, really also we're assuring the family that we weren't trying to inflict harm on the infant and get that point across in a very safe and considerate fashion. And then I think also, as the medical team, really acknowledging that the decisions or the recommendations that we make do have lasting implications not only for that child, but also for that family and that family unit. And that perhaps our own choices may not be what's in the best interest of that particular family. So what we did was we had a patient care conferences. And it's really important, as I think was alluded to by the prior speaker, to really have a broad range of people present. So we had the neonatologist, the surgeons, the nursing team, we had palliative care, we had religious support, we had just about every single group that we could include. The family, however, continued to refuse. And we obtained an ethics consultation. And at this point, we did indeed proceed with a judicial approach. And this was really based on that presumption that the treatment of the child would actually be averting death. If this child was not provided with any nutrition, never mind the reconstruction, death would be imminent. The outcome was that the parents did actually terminate their parental rights in this case. I think it was it was hard for them. I think it was more the point when we went through it, it was really not so much about the tracheolosophageal fistula. Unfortunately, it was really about the fact that they did not feel that within their family unit they could support a child with the potential of developmental delay. And ultimately, the infant did undergo a successful repair and ended up being fostered by one of our neonatal intensive care unit nurses. And the family did have peace with this decision. And I think there was some relief. So changing track to a very different case, this is a case of teen autonomy all the way at the other end of the spectrum. So John is a very pleasant 13-year-old boy and he has ulcerative colitis. He's despite having intensive outpatient medical management, he's had biologics and immunosuppressants. He continues to have frequent flares. And these frequent flares are really impacting his scholastic ability as well as his socialization. He's actually missed 40 days of school in the past year. So the GI team meets with them, they're concerned, but they do outline two therapeutic plans to the family and him. One is to continue the medical management and hope that perhaps there is a change or a better response. And the other is to refer him for surgery. Now the surgery would involve a temporary ostomy, which is a connection of the bowel up to the abdominal wall. And it would also mean that at the time of the reconstruction back down to the anus, he would probably be plagued with frequent loose stool at least for a period of time. His parents do think that the surgery would be best thinking perhaps he could get back to school and have a more for normal life. Whereas John is adamant that he does not want to have a temporary ostomy, and he really doesn't want to have any of those quality of life issues or potential complications. So dealing with the teen is a unique situation. Really, when we think about informed consent, it's really about the ability to understand the implications of the procedure, the benefits, the risks, the alternatives, and also have the capacity to make decisions based on a balance of weighing these different decisions. Some children and teenagers are in a different developmental stage where they may be able to participate more. I personally as a surgeon strongly believe and need ascent from my teenage patients. I think that would be the standard certainly as recommended by many people with any knowledge of this. However, you know, sometimes they're conflicts, parents don't always grieve their teenagers, shocker. So this is an interesting decisional discord strategy that was actually designed more for pediatricians, but I went ahead and adjusted it to provider because I think it's relevant to pediatric surgeons as well. The deference model would be that simply the parent's choice was accepted. This would work on the premise that the parent has the child's best interests and knows what's best for the child, but it completely sort of violates or minimizes the autonomy of that child. The arbitrary model is that really the provider tries to act as a mediator between what the parent and the child actually are choosing and hopefully come up with some sort of compromise in between. And then the third model is the model advocate of model whereby the provider sort of sides with the child and tries to support whoever their decision is, sometimes at the cost of what the parent would like. As a surgeon, I think it's really important to try and maintain and build trust with all parties, especially since sometimes what we're doing is a little bit more high risk. And if there is a bad outcome, you really want to make sure that you're all on the same page and you can maintain that trust and therapeutic relationship or even working through complications and sometimes pretty bad complications. So for me, I would always want to try and find a balance between the parent and the child. In the case of this particular situation, you really want to make sure that you have the patient understand in a developmentally appropriate way what their condition entails and have them participate strongly in that decision making process. I would also say if you ask a teenager their opinion and then you completely discount it, you're going to break down the trust in a sometimes non-recoverable way. You also have to sometimes assess what one child understands versus another, as sometimes that obviously can change the input that you might accept from one party or another. The AAP is very clear about wanting to make sure that teenagers at an appropriate developmental level are able to have a voice in their own personal care. And as I said before, this is something that we strongly agree with. So in the case of John, both options were reasonable. Both options were put on the table by the GI team. And for his outcome, the decision was made to continue with the medical management. John didn't indeed continue with this for another six months. It gave him time to process what was going on. And after six months and multiple more days of missed school, he did actually decide to have the the colectomy with the ostomy. He did very well with it, but he needed to do it on his own timeline. And at the point where we got there to do the procedure, he was he was ready. And I think that if we had forced it, or really tried to be more dogmatic in our recommendation to surgeons, we would have broken down that trust. In the third case, we're going to talk about a case of neck totalis. So neck totalis is an uncommon but devastating neonatal disease of the intestine. Unfortunately, it strikes our most fragile patients, the premature infant. This is a case of an x 37 week baby boy who also had a hypoplastic left heart. And he developed severe hemodynamic instability and day of life 42, after undergoing surgical cardiac paliation. This is really sad because he was actually nearing to discharge from his cardiac procedures. But now he ended up requiring cardiovascular support. He was on increasing vasopressor support and a abdominal x-ray revealed extensive pneumatosis and portovina venous gas, which really portends to somewhat advanced necrotizing and tricholitis. On surgical exploration, that baby was found to have widespread bowel necrosis and a very tiny amount of viable duodenum. The rest of the bowel really appeared highly necrotic. So when you're discussing these type of complex issues, it really is important to try and provide the family with some of the medical facts. So although neck is common and there are multiple many neck survivors in extensive cases, the patient is really at risk and in this kind of case will be a short bowel syndrome patient. And they may in fact be dependent upon lifelong parental nutrition. Unfortunately, in small babies, there's no guarantee that they will actually make it to having a transplant or being a transplant candidate. And TPN in a very small infant isn't something that you can do indefinitely. Oftentimes it leads to liver toxicity and the baby may ultimately expire within the first couple of years of life if they get that far. Also when babies have extensive necrotizing and tricholitis, they're at risk for other complications such as catheter sepsis. There's also very poor neurological outcomes for patients with this type of issue. And it should be noted that the bowel can grow and improve. However, I think with something this short, the likelihood of that is very low. So the ethical considerations for this case is that for the family, this really might come as a shock. Even though their baby was small and it had complications and cardiac surgery, they really were thinking they were going to go home. And suddenly this horrible event happens and it's under an emergency type of a situation. So whenever possible again, we really strongly recommend that we involve a multidisciplinary team to truly try and help this family during these kind of acute events because unfortunately sometimes decisions need to be made acutely. We also involve as many providers as possible so that we can really balance the two competing ethical principles of beneficence and non-maleficence. Many of us do feel moral distress with situations like this. And we recommend reviewing the clinical case on an ongoing basis. It's important to be transparent to others. I also often encourage the neonatologists or others to come and view the bowel with us so that folks can really see what we're talking about. One of the approaches for surgical decision making that I think is very useful was developed by Dr. Schwarz and her colleagues. This is the best case worst case scenario. It was truly developed in the setting of vascular surgery and for geriatric patients, but it really is a useful tool for all of us. The idea is that you go through the best case scenario for the patient versus the worst case. You approach it in a way that as a storyteller. So you go through what the best outcome for that child would look like versus what the worst one is. And this hopefully helps the family to frame things better and imagine their life in the future and get away from that kind of acute fear that's happening. So the urgent discussion is required. The outcome unfortunately for this particular patient was predicted to be dismal. And generally our recommendation is no bowel resection and potentially a second look, but most likely allow natural death to occur. There may be different opinions within the treatment team, but I really do think the other important piece that we have to have as surgeons is really to make sure that we're a consensus with all of our other colleagues and team members so that we can really address the family as a unit with a unified voice. Because I think when there's discord, it really leads to more confusion and distrust with the family during a very difficult time. So in conclusion, decision making must be tailored to the parties involved. There has to be a team approach. And the input of the child when appropriate should be encouraged and respected. Consider using that best case, worst case model to help with decision making and prioritise beneficence and non-maleficence whenever possible. Thank you so much for your time. I appreciate it. Thank you very much. Before I introduce our next speaker, I just want to remind everyone to please continue to put questions in the chat and up-click them if you think they're of importance so that we'll address them in the panel. I also want to remind everyone that please stay on after the panel. There will be no break, but I will then be introducing Dr. Dean Kenneth Polanski, who will introduce our McLean Award winner, Dr. Bernie Lowe. Our last speaker, my privilege to introduce Dr. Megan Collins, an Associate Professor of Ophthalmology at the Wilmer Eye Institute and the Department of Pediatric at Johns Hopkins School of Medicine. She is also Associate Faculty at the Johns Hopkins Berman Institute of Bioethics and at Johns Hopkins School of Education. She specialised in pediatric ophthalmology and Adults for Business and directs the Wilmer Pediatric Ophthalmology Fellowship Program. Dr. Collins is the inaugural Executive Director of the new Johns Hopkins Center for School-Based Health, Equity and Youth Engagement. Dr. Collins. Dr. Ross, thank you so much. Great to see you. Great to hear so many wonderful presentations from old friends and colleagues in Chicago. I really do look forward to the next time we can be together in person, but I'm grateful Lainey Mark and the whole McLean Center team for inviting me to speak today. I'm going to go ahead and advance my slide. So today I'm going to talk about the topic of pandemic-related K through 12 school disruptions, school health and health equity. I have the following disclosures. Today's talk, the way I want to frame it, is I want to talk about K through 12 impacts in operations during the pandemic that's now really span three years. I'm going to talk touch briefly on some equity considerations and then the remainder of the time I'm going to talk through the school support framework and growing health needs that we're seeing. I like to start with this quote from my colleague, the founder of the Berman Institute, Ruth Faden, because I think she really encapsulates this was just at the beginning of the pandemic in the United States what we were seeing, which is just as in all public health emergencies, poor children and poor families will suffer the most. And it is most important as we're thinking about these issues, about how we're going to mitigate at that point in time very early in the pandemic, that we have to include active measures to lessen the disproportionate impact on our most vulnerable children. And this is borne out now over 20 plus months at this point in time that we knew that there were going to be so many equity issues at the crux of decisions about when to close schools and when to reopen them. While all children would miss out from school closures, our most vulnerable children would miss out the most. So this was really the inspiration for a group of us, including Ruth Faden, Annette Anderson from the School of Education and myself, to establish what's called the E-School Plus Initiative. And this is an interdisciplinary team at Johns Hopkins that has worked together now since February of 2020 to develop guidance for school stakeholders and policymakers thinking about how to make responsible decisions to support children during COVID disruptions. And there have been a lot. This is a brief timeline of what has happened for students in the United States over the past 20 plus months. And what you can see is roughly starting back in March of 2020, over 50 million students in the U.S. were out of school at that point in time as schools across the country closed. The last school year was sort of a ebb and flow of in-person and virtual and schools being closed. At the same time as schools have sort of had this flip-flopping of operations, there have been a number of consequential policy decisions that have been happening at the national and the state level about vaccine mandates for teachers, mask and vaccine mandates, or sometimes cases of states arguing on mask bans for students and teachers in the classroom. And what we're seeing is that with all of these disruptions from school, what's happening most is we have to think about the vulnerable student population. And in order to think about it, I think it's important to define it. And so there are, you know, there's a huge population of individuals that we define among vulnerable students. And those include students who are living in poverty, students who qualify for support under the Individual with Disabilities Education Act. And they were 50% of students who are getting at least some of their meals at schools through the free and reduced meals program, as well as students who are English language learners. But what we don't capture here well is the other students who are also at risk. And those are students who don't have stable internet in the home. They may not have a device for learning when they're doing remote learning. They may not have supervision in the home for somebody to help them as they're doing coursework. They may be on an unstable or transitional housing. And we now have over 3 million students that we have seen actually just lost from showing up to school at all during the 2020-21 school year. And this brings us to thinking about this vulnerable population. It brings us to thinking about what schools do for kids. And what we what we recognize is they do so much more beyond learning and the provision of education. Schools are critical in food security and provision of a lot of basic health services this may be immunizations, this may be community health centers. They are a place of shelter and safety during the day and they're a place of supervision. And if you go through each one of these bullets we have seen now accumulating evidence of the negative effects of kids being out of school. We have over a billion meals that have been missed. We have lots of information about kids not getting their regular immunizations. We have lots of things about teachers who are traditionally a key player in identifying children who are at risk of child abuse of cases not being reported by teachers yet seeing an uptick in physical abuse of children during the pandemic. So just important to think about these roles and what I'm going to transition to next is really thinking about the school-based health framework. But before I do I want to I we've you know we put a lot of a lot on schools before the pandemic and even during the pandemic. But one of the things that we recognize early on and I want to recognize because Leni Ross's team did a lot of really interesting work in this area as well was looking as to as schools closed how are they thinking about supporting children. And we you know we did a tracker that looked at how State Department of Education reopening plans. This is now back a year this is the 2021 or 2020-21 academic year how they were thinking about these operational considerations which is the first six categories and then the red box is the equity considerations. And what we what we saw in our work is that you know at the beginning of the beginning of the school year unfortunately a lot of people are not thinking about things very clearly but over time we saw there was growth both in thinking about operational considerations as well as equity considerations although I would argue that the equity considerations still lagged. But here's where some things might have gotten lost in translation we wanted you know it was important for schools to be thinking about these things and to talk about them in their plans. But what we've begun to understand much more is what's actually happening on the ground so it's one thing to say in the plan we're going to make sure that everybody gets their necessary health services or that we're giving you know parents appropriate support if their child can't come to the school but we're now beginning to understand what that actually translated into. And I am going to focus for the rest of the talk really on school-based health and what's happened with school-based health services during the pandemic. And this figure I think is key because it recognizes the interrelatedness between health and education. Healthier students are better learners and education creates opportunities for better health. So the pandemic really was disruptive for school-based health services and what happened is you know pre-pandemic we recognize school-based health centers were places that children would go to to access routine care. This could be primary care it could be immunizations it could be vision or dental care. What happened with the pandemic is when schools closed a lot of those operations were suspended they were put on hold for a while we saw a lot of school nurses be being redeployed towards contract tracing or testing or other efforts so a lot of kids who would rely on schools for that health access and narrowing some of those health disparities weren't getting this and at the same time we also saw they weren't going into the community and I can I can personally talk as a pediatric eye doctor but we saw this in vision care so we saw that states were often states often mandate vision screenings for kids that are done routinely at school with the pandemic and with sort of the interruption of of school activities last year most of those didn't happen some of you may be aware seen some of the discussion in the news and in the vision literature that we're actually seeing a spike in nearsightedness during the pandemic because all of us are spending so much time on our computer so we have less screening happening we have more vision problems happening but we have less access to care because that chain of bringing it through the school was not happening as much so our team wrote an article about this couple I guess sometime last year and argued that one of the things that we're seeing with the the pandemic is that there really is just this foundational role of school-based health centers and the pandemic has sort of upended that in ways that we need to now think about how do we how do we increase the opportunities for school-based health centers to continue to have the impact that they need to have and one was was a call for building stronger communication and parental engagement as well as building partnerships in the community so when we had situations where schools were closed that parents would know where else to go to seek care there also has just been in a revolution in the use of telehealth and other app-based technology for for virtually connecting with families which I think is extremely important and the final area here that's that's really interesting to me is schools have started to become more and school-based health centers I should say have become more of a resource for the community as well as for the students who were traditionally in that school and this is this is just an example from kip uh baltimore has the rail center which is run by by johns hopkins university and it is a school-based health center that was actually successful keeping our operations opening during the pandemic but i love this quote from the medical director here because it it um i think highlights sort of the the evolving role of nurses she says nursing professionals have reinvented themselves in school nursing 12 times over the past year it's so true because they had to they had to shift into so many different roles and often sometimes at the expense of some of the roles that they had been doing previously so which brings me to a recent analysis that we've done kip as an example of a place where they began offering vaccinations for for kids in the for teachers and for kids in the community and it looks like actually a lot of um health school districts have started to do this this is an analysis we recently did of 24 districts in maryland and as you can see over 70 of them are start are providing school-based covid health services so of course covid has become the important thing um in terms of health services recently and this was for testing and for vaccination but the interesting thing here is if you look not only are they offering these services to students but the vast majority are offering to teachers as well both for testing and for vaccination and even when you go further into vaccination they're also offering it to families and in a third of cases to the communities as well i think this just underscores this growing role of school-based health centers um as we are still in the pandemic and looking beyond now one of the things that recently president biden announced was the american rescue plan with funds that were included for schools and schools were us department of education had a template where schools were supposed to think about what types of resources they needed to open safely during this school year and beyond and these were every state department of education submitted a plan to the u.s department of education they would do over the summer um we analyzed the 48 that were published when we did this analysis and what we wanted to look at was recognizing this growing role of school-based health centers and school health services and this expansion um into covid care as well as actually i haven't mentioned yet this you know we've huge mental health um challenge particularly for for um adolescents and young adults that we've seen um yeah become exacerbated by the pandemic and so the need for schools to be in this space as well so we looked at data on nursing on somatic health services those would be the traditional primary care vision care things like that as well as mental health services and covid services and here's what we found so just to orient you in the in the four different categories that we looked at the yes is in orange and the no is in blue and what you'll see i mean you know kind of across the board um nobody is is talking about school-based health services as much as i would have expected i would have i would have expected a hundred percent of plans to be talking about things and as you can see that's not the case um but what you can also see is where the most um emphasis is um is on mental and behavioral health services followed by school nursing and um school covid services but you can see 90 plus percent of the plants did not actually mention anything about school-based somatic health services which to me is concerning given what we've seen how critical those are um in providing care for kids that again had not traditionally been getting care in the community we delved into this a little bit deeper um looking at you know what were the subcategories that were included in mental health and somatic health services and you can see again across the board somatic health services were not addressed um in any way uh in comparison to how mental health services or school nursing mental health services were the most but then school nursing were being addressed and and to me that is something that i'm concerned about because i think that school nursing and i think mental health services are incredibly important but i want to make sure that we don't lose um lose sight of the importance of our somatic-based health programs that i think have been critical to kids over the years and i'm going to give a brief example um from from my own work so i help um run a school-based vision program across the city of baltimore which is called vision for baltimore and this is a program that started back in 2016 goes into schools and gives them eye exams and glasses and we we stayed open during the pandemic on an appointment basis but basically we saw probably 10 percent of the kids during the last school year that we had seen in the prior years and and the reason this becomes concerning for me is the model that we have developed um has demonstrated both an ability to identify kids who need glasses make help them be able to see better but we also have recently published a report about the academic impact so there's lots of kids who are struggling because they don't have um glasses and can't see clearly so there are a lot of school-based programs similar to this um that are advancing both health and educational equity but as we're sort of navigating into the hopefully post-pandemic world i think emphasis is not necessarily directed towards some of these programs uh and i worry long term that this will widen some of the already pre-existing health and educational disparities that these programs were helping to um have some catch up on so uh in conclusion i think it's just important that we recognize school-based health services have really expanded way beyond their traditional scope during the pandemic for student staff in the community there to me is some concerning evidence on the horizon that we may not be paying as much attention right now to some of the using some of the resources for some of the traditional somatic school-based health services i'm very glad to see the work that's being done in mental health services because i think that's critical but i think as we move forward and we recognize both the short and long-term impacts of covid-related interruptions on school for children i think it's important to recognize both and make sure we shore up our system to ensure the the best outcome for our children i have my email here if anybody has any questions and thank you again for the opportunity to present thank you all as we're regrouping in order to to see the whole panel i just want to thank all the speakers uh for this wonderful talk i also just want to take one moment to correct the misunderstanding in my talk one question was why i ignore adopted children i actually include adoptive siblings um who are raised together what i was saying is that if a child is relinquished and then the parents go on and have additional children that i don't consider the relinquished child to be a sibling um and there was a infamous case in the literature where parents who had relinquished a child then went looking to that child to serve as a bone marrow donor and i don't think that that is actually a sibling relationship at that point but i'd like to start with some of the questions that are coming that have come in and some really uh difficult ones uh and let let me start with mark sigler's question dr hunter and or dr hon is there a risk that the multidisciplinary team involved in consultations will intimidate or overwhelm parents yes there is um you know i and actually it makes me think of a particular conversation um with a family group that i had you you don't want to come in where it's sort of us against them um i also think that it's really important if you are are having one of these conversations to ask the family who they would like there um i don't mind if there's a grandmother or a friend or somebody else i want them to be supported i also take real care when we're setting up the room that it's not the family and then the providers kind of like bridged against them um i do think that some of those dynamics are really important to be sensitive to because it really is a team and group discussion um as opposed to the expert medical people against the family um so that's what i would say hey that's yes the only thing i would add is i think this is why a longitudinal experience integrating palliative care in the beginning is really helpful because then they're not seeing 20 people for the first time at you know a table where we're going to talk about all these horrible subjects but we're able to see them sort of over time one on one for people who have long hospital stays or even in the clinic and just check it on them see if they need juice see if they need a snack and i think those little things help us forge a relationship over time who i don't think it's about getting so many people at the table at the same time but having us there over a longitudinal experience uh dr hon we also i'd like you to clarify do you encounter situations that lack of medical insurance interferes with pediatric palliative care so that's a great question i think that i have never encountered where that's a barrier because um partly because of medicaid not being able to balance spill anybody and all pediatric hospices have sort of a philanthropy arm as well we have the most challenges we've recently had a 21 year old patient who was getting aggressive chemotherapy and also met hospice criteria and he was not able to go on hospice until he stopped his treatment so i think he had six days on hospice before he died but i think that it's much more of a barrier for adults than children i must say we've been fortunate either through philanthropy um or through medicaid to get everybody covered for their outpatient needs great i also just would like you to address um please address the somewhat discouraging prevailing perspective regarding medical futility versus your positive palliative care paradigm the f words you don't like to use that yeah that's hard um i don't know the answer to that i mean i think you could say that just because a situation is medically futile doesn't mean that you still can't help the family find a way to find joy or find a way to make it better so many times it's things that we don't think about turning their favorite song on the radio putting on their favorite show getting their favorite thing nearby so i think even you're going to invoke futility you can still talk about other things to you know sort of help the family accept where they are by focusing on something positive i know it seems a little bit polyanna um bring joy to a dying situation but that literally is what palliative care is supposed to do so if we're doing it well it should bring something so maybe replace the futility with the favorites that's why we love you doing your job doctor that's the own dr hunter there are a lot of questions about your case with um the medical custody and whether for example whether uh adoption or relinquishing the child was considered even earlier up front when the parents were refusing um and things of that sort to just wanted you to comment on sort of the order and whether it may have reduced some of the stress if the parent had understood what their full option range was yeah i i actually think that's that those are really good points i think that there was also a learning curve for the medical team because the initial reaction from the medical team i mean this is not a strength is oh there's something wrong with this family if we can just explain it well enough if we can bit you know bend their will to what we think needs to happen um you know we can we can sit on this for another you know few days and i think that we really had to reframe our approach to it and i think you really have to take some of your personal feelings out of it and really try and um put yourself into that family shoe and although for me as an individual um in the context of my family and my children um that a baby like that would would be a welcome family member i guess it's not for everybody and and that's not for me to judge it's not for us as a healthcare team to judge we just need to do the best thing for that individual patient and that baby so yes i think we we should have thought about that um maybe from the get go and put that on the table that the family it wasn't either you take this baby home as it is or the baby dies but there are other options and um other other things that can be done or social circumstances for that that child it's a good point so megan the um you you continue to talk about your talk of the expanding role of healthcare in the schools and first of all the school's doing incredible number of different things for children which became so obvious during this pandemic so is that a danger in and of itself that we rely on the schools to do so much and then a pandemic happens and we're really left without anybody to be in a sense the safety net uh thanks lanie it's it's a great question and it really depends on how the school services are conceptualized i think the the the best case scenario is when the the school health services are done with some connection with the community partnership so that if schools are closed if there's an emergency people know where to go but we saw lots of experiences during the pandemic that just because the school-based health center and the the school-based vision program and the school-based dental program were closed kids were not getting any of these services and and as we're sort of getting back in person we're recognizing okay we've got lots of mental health issues we've got to figure out how to make sure we have COVID testing and COVID vaccine and we're using our health services to to focus on those areas but we're losing we're losing i think the recognition that there were a lot of things that they did previously that we can't that we can't lose we can't risk losing because we'll put kids further behind in the long term if we do that thank you uh dr hon there are a couple of questions about your data so one is about racial disparities exists with triggered adult palliative consults with physicians declining more white patient triggered consults how might that be overcome that was from dr uh jena piscitello wow um that's complicated so if i understand the question correctly jena is saying that on standard trigger consultation in the adults that patients who are white turn them down or doctors who are white turn them down maybe just read the question again a little confused yeah uh racial disparities exist with triggered adult palliative consults with MDs declining more white patient triggered consults so is the physicians declining for their white patients i'm not sure i can answer the question because i don't know that paper that she's referring to i think in our experience it's the opposite certainly um part of why we moved anecdotally to palliative care consult is because the people or standard troopers were that the initial consults i got when i first came to komar were all from physician moms so if you want to talk about the highest health literacy dr momy's have a very high health literacy and it was actually the dr momy's and the nick you when their children were dying that said i want to talk to the palliative care doctor um so i don't i mean jena you're brilliant and i'm looking forward to your talk later today um but i just i'm not familiar with that paper so i can't comment on that i think that was not our experience and all the data in pediatrics shows that people are um refusing based on their assumptions their implicit bias that oh they're a catholic they're not going to want to or they're you know latino and they're not going to want to um or they're african-american and we know that that's not in their value system so i think a lot more people let their implicit bias be a barrier than refusing consults for white people and to be fair if the problem is that i mean there's just no issue in terms of access to care among the caucasian population so that's just not where we should put our focus and on that note there was a follow-up question by dana van de heide who wrote dr hon was there a difference in how frequently palliative consult was offered to families of different ethnicities but declined by them so in general if a palliative care consult has been offered but declined there would still be documentation in the chart all of the fizz database which was national data was discharge data so one of our limitations this is only for things that were billed i think that it all depends on how people present it i think if people say this is another person in your care team and their expertise is x y and z it's not something that would be declined when would anybody on rounds ever say i don't want the pharmacist involved in my care but we recognize the pharmacists are the experts in pharmacology so why and if you have an infection you never say oh i don't want infections disease you know involved in my care so if families are refusing that or you know surgery like when does anyone ever say no people don't so i think they do oh thank you go ahead uh no i i think that sometimes people have um a fear of what it means to involve a a surgeon and i think that there's some families who adamantly um don't want the surgeon to come in because they feel like that's some sort of um means to getting towards a an end of life situation so they try and keep us at bay um i mean i have literally been told i don't want any surgeon in the room i don't want surgeons here because we're kind of a scary entity and we're we're really fixers we are carpenters and plumbers but um sometimes what surgery represents in the context of that family's experience is abhorrent wow that's a really interesting perspective it that's a great conversation i want to bring in some uh more panelists and so let me bring in uh megan on this one could you please explain more why school-based somatic health services is receiving less attention compared to other health services right now and i guess i'll add is it just that we have sort of only so many resources and then how can how do we deal with this i think we're trying to have schools put out so many fires at once honestly we you know they're appropriately so there's been this push for how do we get kids back in the classroom and we're and we recognize okay we need you know we need people to be vaccinated so how you know what's the role of schools in vaccination what's the role of schools in testing so those are very important we've also recognized that kids being you know under lockdown for 12 to 18 plus months has caused a significant mental health crisis so we've got to put a lot of dollars there i i think the stuff that unfortunately takes a back seat when you're in a crisis mode is the preventative care it's we'll deal with that later we'll deal with the you know sort of that the um the routine physical the dental care the vision care the things that are important for sure but we've got a lot of other stuff to do um so i i think that is you know honestly to me why it's happening um that there's we're worried about putting out all these fires but i guess the argument i'm trying to make is that there's something simmering in the back that five years down the road is going to cause us a lot of problems if that if we don't try to keep it on the radar right now we're going to be in trouble and it's just we're seeing it across the board for for all kinds of school health services that are not you know who were critical um or is not enough there's not enough staff there's not even enough honestly sometimes bandwidth from from parents or schools in general if you bring the services in they've got so many other things going on it's hard to bring them in but as we move towards normalizing a bit i'd like to make sure that we just don't lose um lose a remembrance of why these are so important and why we started with this in the first place and great and back to dr hunter although i would love to hear some of the other panelists comment about the dangers of asking for the adolescent's position when it may be more of an urgent case in the one you described and the child's refusal might not be respected i i think that um as i said trust is really at the um forefront of of the relationship i think between the surgeon the patient and the family because the unique thing with being a surgeon is that people are either handing over them their own selves their own person or their most important human in the world their child to somebody to really violate in order to fix them right so we kind of cause injury to fix a problem so for me i i work a lot with the teenage population because of the chest wall deformity work that i do and i i do find that um i like working with teenagers and i think that a lot of them are a lot more um reasonable than you might first think and i think if you address the um the teenager with respect and autonomy and you're not just talking to the parent you're actually also talking to them i really feel that my my conversations with them are actually just as reasonable as they are with the parents um i haven't had too many situations where a kid would really absolutely refuse to do something um that was in the interest of being lifesaving for them i think most of the discussions where we do run into trouble are the the ostomies where you know somebody doesn't want to go to prom with this type of the thing um but i i perhaps do take a little bit more of a paternalistic track um but a respectful one that you know we're going to work through this we're going to do it together i'm going to tell you what's going on um as opposed to us three out here's option a and option b option a and option b are just fine when there really is some equipoise between the decisions i might have a preference um but it's not going to be um to their detriment i when it really is something that i strongly feel is going to be lifesaving um then then i will push for that but really in a supportive way um and that's just my own personal style but i i do need them to take my hand in the process and and walk with me and what role would you say the parents have in in convincing the child or is it just your role and um ideally um they are my partner in this and and we and we work together but i will tell you there are some teams that do not want to hear from the parent they are in a particular developmental place with the parent where they're if you say black they're going to say white um so in those kind of cases i think really trying to engage the um the patient and it's also okay to have parents step outside and have a private conversation with them of course with parental permission to do this um and sometimes you just have to take a bit more time give give people time let them go away and think about it if it's not an acute decision for a couple of days or a week and then come back again that's okay you don't have to sign on the line right when you meet me so so sarah i would love to hear to what extent do you deal with uh parent teenage differences in attitudes regarding palliative care and how do you address that yeah so it's a great question i think it comes up frequently with goals around end of life care because families will say well they told me they wanted everything done and then you get to a point that everything means something different and everything's not always feasible anymore and so i think we tend to remind parents that they just need to honor like the spirit of what their child wanted and not necessarily all the different things i do want to follow up on what that hunter was saying about equipoise because i think we see this a lot more in our patients with sickle cell disease who are in the hospital for a pain crisis and yesterday it was rounding on an adolescent patient who was on ketamine and diluted and we need to have a two-way conversation about our plan moving forward and he was just grunting at me and i'm like we need to have a plan um and then i eventually got him to say a few words so then we could make a plan moving forward but to me it's the difference between saying to them what do you want to do which people have a tendency to say to that population well what do you want to do today as opposed to saying we have two choices do you want to do a or do you want to do b and i think when we give them two very clear choices then we make a lot more progress with adolescents and we give them a lot of autonomy we by no means call their parents every time we round on them um because it's their pain in their body and i'm not as interested in what the parents perceive um but no just to follow up on the point of equipoise great so we have 20 seconds left is there any final words that any of the panelists want to bring up if not i want to thank everybody i see comments have been sent about whether the handouts will be available all of this will be on a zoom channel through the university of chicago mclean center and we're thrilled that you were so engaged in this panel so on behalf of my co-panelist i would just want to say thank you and i want to remind everyone please stay on because we're about to come to the award presentation of the mclean prize and i'd like to take this opportunity then to introduce henneth polanski who is the president of the u chicago medical health systems and dean of the division of the biological sciences and the pritzker school of medicine and the executive vice president of medical affairs who will be introducing dr bernie lowe our this year's well-deserved mclean prize winner so thank you all very much for a great panel