 Good afternoon. On behalf of the McLean Center for Clinical Medical Ethics, the Center for Health and the Social Sciences, and the Bucksbaum Institute, David Meltzer, and I are delighted to welcome you to the second lecture in our 2019-2020 series. It's a series of 26 lectures, and the programs are available out next to the lunches in the back. It's my pleasure today to introduce a dear friend, our speaker, Dr. John Lantos. Dr. Lantos is a professor of pediatrics at the University of Missouri in Kansas City and is the founding director of the Children's Mercy Hospital Bioethics Center. Upon receiving his medical degree from the University of Pittsburgh, Dr. Lantos completed his residency at Children's Hospital National Medical Center in Washington, DC. And following that, he served for two years in the public health service in rural West Virginia. That's where I think we first encountered each other, rural West Virginia. He later came to the University of Chicago, completed a fellowship at the McLean Center and went on to teach in the Department of Pediatrics for 20 years. Dr. Lantos is one of the few physician ethicists in the country who has served both as president of the American Society of Law and Medicine and Ethics, as well as president of the American Society of Bioethics and Humanities. John is on the executive committee of the American Academy of Pediatric Section on Bioethics. He's also an associate editor of a number of journals, including Pediatrics, the American Journal of Bioethics, and Perspectives in Biology and Medicine. A highly published author, John Lantos writes about ethical issues in clinical care, research, and public policy. He's written two outstanding books about ethical issues in neonatology, including one with the late Dr. Bill Meadow. They worked on it here. That book was entitled Neonatal Bioethics, The Moral Challenges of Medical Innovation. Currently, Dr. Lantos is working on a forthcoming book on the rise of fetal medicine. While here at the university, he wrote a book with Diana Lauderdale called Pediatrics, called John Help Me. Prenatal. Prenatal Babies and Fetal Patients, another book about fetal medicine. In the policy arena, John has served on President Clinton's Health Reform Task Force, advised President Bush's Council on Bioethics about ethical issues in research, and currently is a co-investigator on the NHGRI-funded U19 Center Grant to study clinical and ethical issues in whole genome sequencing of newborn babies. Today, as you see behind me, Dr. Lantos' talk will be on the doctor-patient relationship in pediatrics. It's a pleasure and a delight to welcome John back to the University of Chicago. John. OK. And it is, of course, a great pleasure to be back. Let me just clarify one thing about the introduction. When Mark says, we encountered each other in rural West Virginia, Mark was not in rural West Virginia. Never had. Yes, that was a virtual encounter. But great to be back, great to see so many friends, a little daunting, but going to talk a little bit about doctor-patient relationship in pediatrics. We used to do these in that H-103, where people sat around the table, and it was much more faculty workshop-y. So let's try to keep that atmosphere. And in the spirit of the program that David Meltzer and I used to run, the Robert Wood Johnson Clinical Scholars Program, it's OK if the speaker gets stopped on their first slide with questions and never gets to another one. Just please, this should be interactive, ethics is a contact sport. But if you don't interact, this is what I'll try to do today. First, give a little theory, mostly from Laney Ross. Is Laney here? Oh, man, then I can say anything. What's that? He said it'll make you talk. Oh, OK. I was anticipating. OK. Go through a few cases to sort of illustrate the theory and then talk about the unique role and the unique stresses of what it means to be a parent who was expected to be a surrogate decision maker, since as we'll talk about the pediatric doctor-patient relationship, it's really a doctor-patient-parent relationship. And then discussion of the ways that cases can inform theory and theory might help us think about cases. So Laney wrote a great article a few years ago about the doctor-patient relationship in pediatrics. And she outlined four foundational principles for what pediatric bioethics is all about, and perhaps why it's different from other sorts of doctor-patient relationships. One is the foundational principle. With adults, the foundational principle in much of bioethics is self-determination. The idea is you find out what patients want. Sometimes there's a conflict between what doctors think is best for them, but the patient wins. Self-determination guides treatment decisions. In pediatrics, no? Yes. You're shaking your head. In pediatrics, the principle is the best interests of the child. You could think of this in Beecham and Childers terms, adult medicines autonomy. Pediatrics is beneficence. Parents and doctors are held to the same standard. We're supposed to do what's in the child's best interest. Laney says, as I mentioned before, that in pediatrics, instead of a dyadic doctor-patient relationship, it's really a triadic doctor-patient-parent relationship. Although if their actions fall below a threshold of abuse and neglect, the state can intervene. And the state can even override situations where doctors and parents agree to withhold life-sustaining treatment. This is what the baby-toe case was all about. So it could be thought of as a quadratic rather than triadic relationship. Doctor-patient-parent state all held to that same best interests of the child standard. Laney says that another fundamental feature is the child is assumed to lack decisional capacity. We'll talk about that one. And then parents are presumed to be the surrogate decision makers. And they're expected to make decisions based on the child's best interests, although Laney also says we don't really hold parents to that standard. We hold them to a standard of basic interests rather than best interests. We'll get into what that might mean as well. I'm so disappointed Laney isn't here. She'd be shouting at me already. But here are some comments on her four categories. One, the best interest standard is sort of a principle everybody likes. Nobody knows quite what it means, but it sounds good. And there's little argument that we should try to do what's best for a child. The idea that it's a triadic relationship just seems to be a fact rather than a value. I mean, babies can't make decisions for themselves. So the babies are patient, but the parent is the decision maker. That one's easy. The last two, though, seem to be where the action is. Do children really lack decisional capacity? And many of the complicated cases in pediatric bioethics have to do with emerging capacity for making decisions as children get older. And the whole concept of seeking the ascent of the child rather than the informed consent is this kind of muddy, murky gray zone where we sort of say, yeah, it's not informed consent, but we still need to involve the child in some way. So we're going to seek their ascent, try to get them to agree. And then there are all these questions of, I quote, does that really mean? And what if their parents disagree? And we'll talk about that a little bit. And then the idea that parents are uniquely suited to act in the child's best interest, I think, is an even murkier gray zone and gets into the whole idea of whether families have interests, or parents have interests that also need to be considered. Do siblings have interests? And what happens when the interests of the family, the parents, or the siblings conflict with the best interests of the child that I think is somewhat unique to pediatrics? Yes, sir. Yeah, John's the first point. Sure. If the best interest in the child, the most significant theoretical example of a treatment cost a million dollars and a 1% chance of being successful, once the best interest in the child is taken 1% chance. Maybe. And that is not the best interest in the community, necessarily. So I would say that it's not unperceivable to say that the best interest of the child is going to be a foundation. I think there's a real question here of assets, a resource allocation, and the cost of certain interventions. So the way I would, yeah, great point. So there's a conflicting principle of justice and resource allocation. How much do you spend on one child if it's going to be detrimental to all the other children? In the context of doctor-patient relationship, I would say the doctor should advocate for that 1% chance, but constraints might be necessary coming from somewhere else, or I would say if the doctor is not doing that and instead is making the resource allocation justice decision, they're not acting as that patient's doctor anymore. They're acting as a policymaker. But isn't that unfair that you put the decision making decision on that? Shouldn't somebody else be setting? I'll give you an example where this is happening today. Well, it's not quite your example. It's not the 1%. But what if a treatment costs a million dollars and it has a 50% chance of being beneficial, which is the real situation with two treatments that were recently approved for spinal muscular atrophy? One of them has the highest price tag of any drug yet, $2 million for a single dose. And the FDA approved it, and doctors are prescribing it. Is that bad for other children? Absolutely. If you think resources are limited, and David has his hand up, so. Well, I would say that's a good one. OK. Which is, but it's no differentially controversial between that issue in children versus that issue in adults. In other words, the trade off. That's a good way. And so another way to pray, I think, where your comment from is, sort of, what do you need about the doctor for children as opposed to the doctor for patient relationship in adults? And this issue was one that I'm not sure staff rates those two. That's a great point, Dave. The patient wanted the 1% chance with the million dollar treatment and was an adult. Somebody would face the same issue. Do they have the right to do it? But that would be based on autonomy. This presumably, what would make it different in peeds? In peeds, I think, and if the SMA example is a good one, it would turn not on the million dollar price tag, but on the 1% and the question of whether anything is worth doing with a 1% chance. Two other considerations I think that make peeds unique. And this may be at least somewhat related to these points. Pediatrics, more than medicine, I think, has an interest in the child's long term future. Long term, like decades, not months or years. So when we're treating babies, we think about what they're going to be like as adults based on known outcomes. I don't think, in the same way, internists think about what their patients are going to be like 20 years down the road. Six month outcomes, maybe five year outcomes. But in peeds, there's a much longer term horizon thinking about the adults to be. And another thing that's unique about peeds is, in some cases, we take more of a population health approach than I think other specialties do. And two examples of this would be newborn metabolic screening and mandated or semi-mandated childhood immunizations, where the goal is to say every child should have all of these things as a matter of public health. I think that's a unique perspective that we'll get to when we talk about controversies about immunization. Yep, please. So sometimes when parents or prospective parents are facing a child with a severe challenge, that has implications for whether they decide to have other children. OK, I think that's true. So then there's a life that would never potentially be brought into being, who that's being influenced by the decision that you make about this one. Now, I'm not saying that's easy, but I'm saying it's a reality. And so would have an impact on the doctor-patient-parent relationship after the diagnosis of Tay-Sachs or Gauchay's disease? Or a pre-natal diagnosis. And you would say, we need to talk about what's best for your. I'm just saying that, and this is true in adults as well, that there are familial effects. But they're a little different because there are lives that exist in the context of a family where decisions you make about one person affects others. Here we're talking about lives potentially that don't even exist by any wrong definition. But would be affected by a decision. So a much more direct effect on future reproductive decisions than, say, diagnosing Huntington's disease in a 50-year-old, which might have an impact on the way the family thinks about having you yet. Thank you. I'm going to add that one. OK. Let's delve into the emerging decisional capacity one. Because, again, I think in Laney's four principles, it's a bit of an oversimplification. It works for neonates to say the child doesn't have decisional capacity. But many of the ethical dilemmas that come to a Children's Hospital Ethics Committee focus on the involvement of older children or teens who seem to have opinions, sometimes strongly held opinions about what's best for them or what they prefer that their parents don't. So here's one. 15-year-old with metastatic sarcomas scheduled to undergo a debulking procedure because she has lung metastases. The anesthesiologist says we should put in an epidural catheter for anesthesia. And for post-op pain, the parents say, fabulous, great idea. The patient says, no way. I don't want you sticking a needle in my back. Parents take the anesthesiologist aside and say, she doesn't know what she's talking about. Put her to sleep. And then once she's asleep, put in the epidural. What do you think? Yes? I think it's the frozen pot that you have to take the teens to stand. Parents say, she's just scared of needles. If she's asleep, when she wakes up, she'll thank us. We know her best. And we know what's in her best interest. Parents are the legally-empowered decision makers. According to the Ross principles, patients are presumed to lack decisional capacity. So what's best for the teen? And if you don't tell her, is that really lying? I don't know that it's us. Once you were under, you seemed to be in pain. And we had to make a clinical decision in the OR. So we decided to do the epidural. Sorry. How do you feel? I'm in no pain. Could a road trust? And who gets to decide? I mean, do the parents get to decide? Does the doctor get to decide? Parents say, she's our kid. We know what's best. We have the legal right. Just say, we're your parents. We know that's pretty good. So you could counsel the parents to say, exactly that. Like, let's not do the deception. But you have the legal right. It's what's best for her. She's kicking and screaming on the table. It's hard to put an epidural in. But we have her strengths. Yeah? But here's also the right. And so here's many anesthesiologists that aren't going to be willing to do this anesthetized job. Because our pediatric anesthesiologists, even in small children, they give some verset where they do not fully anesthetize them. So there may be medical contraindications to doing what the parents request. And the anesthesiologist could say, I clearly can't do that. So we'd be back to Bob's approach, which is to say, we get to make the decision. Yes? She should have some self-interpretation of that. And that her scent is essential, and that she can stay in her mind when she has the day to say it's not an epidural. Put the epidural in then. Yeah? OK, here's some reasons to defer to the parents. Again, from Laney, children make decisions based on limited world experience with greater attention to short term rather than a lifetime autonomy issues. Parents have rights and responsibilities, even after the child has some competency. And the intimate family has intrinsic value. The parents have a right to sort of say how they want to raise their children. And that's why we give them the right to make decisions, even sometimes controversial decisions. Yes? Well, what if the case is not about control of the pain? OK. And rather, it was a life or death decision in the same age room. What if? I think the parental decision would put the overwhelm for these reasons. Yeah, reasons like that, the overwhelm of the child's issues, the result of the child's death, or an incurable event. So it's the implications of the decision rather than taking a hard stand on whether children should be able to make decisions. Children can make trivial decisions, but serious decisions. So we're saying to them, we respect your autonomy in a playpen. Yes? Yes. Well, I think the first reason to differ is here. If it's not going to affect the child's lifetime autonomy issues, and it's really only about a short term issue, perhaps it's appropriate, I think, is what we're saying to make the child make decisions. Here's what some other people said. This is a forthcoming in pediatrics, where we have a series where we present cases and then you get people to comment. So we've got a bunch of pediatric anesthesiologists to write about this. Ivor Burkowitz is at Hopkins. He said, no way. A decision denying this regard to developing autonomy is disrespectful. It will affect her long term trust in medical. Essentially saying, I'm taking the longer term view. We're not just looking at her short term interests, but we're raising her to be a trusting person. And parents, if you violate that trust, you are not thinking about her long term interests yet. So I think we have a certain, and I have another example, of patients for the disorders of the sexual development OK. And not held them in the old days. We know that we've done a lot of harm to these individuals. Some people know it better than others. Sometimes we have to make decisions early because of other medical conditions. But now, there's a big trend in all the centers to wait until a child is old enough to ascend and understand what is going on with their bodies and to help them participate in the decision making. But the surrogate that we had was the physician, instead of the parents, he had counsel with the parents. That's what we thought was the best interest of the child. So because that is not an emerging autonomy scenario, let me change it a little bit for you. We take the new approach rather than the old approach. The child has CX congenital adrenal hyperplasia and clitoromegaly XX, say to the parents, parents say, you've got to make this thing smaller. She looks like a boy. You go like, no, no, no, wait, wait for her emerging autonomy. She may like a big clitoris. How do we know? And she gets to be five and says, when I go to the bathroom, I don't look like the other girls. I don't like this. And the parents come back to you. Is she old enough now? No. The parents give you a huge amount of attention. OK, you've had five years. And until a child is of an age to consent, there's still a lot of data that is not real. Sure, always. We have centers who are few that are given to the children to assess. Although this is one area where I think not only are there a lot of things that are not known, but in this particular situation that you're talking about, they are unknowable because nobody's going to do a randomized trial of earlier clitoral reduction surgery and do careful long-term follow-up to look at marital satisfaction, sexual satisfaction, psychological adjustment, and suicide rates. Not going to happen, so we'll never know. And we still have to decide. You either do the surgery or you don't. OK. It's a great example because if you get out of the newborn period and the kid's getting older and eventually it gets into all the questions about gender transition and all that stuff, when does the child know enough that we're going to say their opinion prevails and you can bifurcate that and their parents agree or and their parents disagree. So it's a great example for the complexity of this triadic relationship with emerging decisional autonomy. Maybe there's an analogy at the other end of life for declining decisional autonomy, although again it doesn't engage in the same way the unique role of the parents in the long-term follow-up issues. So how long? No, we'll get back to how long you wait before doing that surgery. We would pay a price down the road for not being respectful now. And this is Mark's point, the sacrifice might be worth it if the risks of refusing were serious. But in this case we have other equally good arguably ways of controlling her pain. So it's a decision that doesn't really matter. So the price you'd pay in overriding her decision or deceiving her and destroying her trust would be a price you'd pay for no real benefit. You can do a regional block. You can do all sorts of things. I think in addition to Debra's point about it, at what age have children achieved the ability of the right to assent to a decision? There is this other point that is different. It's not just kids going wandering around. But what is the dividing line at which we would permit a child with the ability to accept, to make such a decision for himself or herself? And at what kind of situation would we not be in? And I think we're identifying at least the factors that would go on the scale on both sides. One is the seriousness of the decision. One is some assessment of the teen's capacity to reason about that particular decision. And one related to seriousness is whether there are alternatives. And then it would get into are the alternatives good enough? What if the alternative is not quite as good? What if the alternative is half as good? How comparable does it have to be? And that gets into this. As the child's capacity increased, we move away from the best interest approach and honor the children's developing autonomy. All that sounds good. Teens, doctors, and parents eventually work these things out most of the time. In this case, the anesthetists refuse. They talk to the parents. They explain that there were alternatives. The parents got it. They didn't do the epidural. It was all good. And when that happens, all the principals come into harmony, and we don't have to have a con. So what happens, though, when they don't, when the problem persists, who should win and why? And it's the proper standard then the child's best interests or the child's basic interests or the child's interests weighed against some family factors, parents' interests, siblings' interests. How do we count the child's emerging autonomy? And again, this is what's different in PEDES. The role of the family for a pediatric patient is not like the role of other surrogates. Spouse making a decision for their spouse, adult children making decisions for their parents, they don't have skin in the game in quite the same way that parents do. So Dan Grohl, who used to be here, got his PhD in philosophy, is now up at Carleton, wrote a widely cited article now where he really tried to tease out what he conceptualized as four different models of family interests and the way we think about why family interests might matter and why we might sometimes defer to parents even in a decision where we think what they're doing is not necessarily in the best interest of the child. He calls these, you can see it, oxygen mask, wide interest, family interests, and what he calls direct. The oxygen mask model is put on your own mask first, then help your child where the rationale is you're taking care of your own needs so that you can take care of the child's needs. Your needs are instrumental to taking care of the child's needs. They don't trump the child's needs. They support the child's needs. And parents should consider their own interests then only when doing so helps the sick child. Oxygen mask model. Wide interests, Dan Grohls, is in doing well by my child, I'm at the very same time doing well by myself. My interests can implausibly do encompass the interests of the child. That's what wide means. So there's no sharp separation between the interests of the sick child and the interests of the parents. I want my child to grow up to be healthy. That's my interest. I'm going to do what's best for them. He calls the family interests model one where he says, the family is an entity that has its own moral claims, almost as he calls it a corporate entity. Sometimes we have to do something that's not the best thing for one member of the family because the family needs that. And maybe it's bad for the child. But families have the right to demand sacrifices of family members for the good of the family. This is a model that I think is prevalent in most of the world, less prevalent in America and maybe the West, although I think even in many parts of Europe it's the model of family. The family is the moral entity that needs to be taken into account, not the individual. Usually the father is the spokesperson for the family and says, we have four kids. I'm paying for school for three of them. And the fourth one is a premium and is in the NICU. And the bill is going to be too much. Let that kid die. The family needs the money for the other kids. And in most parts of the world, most doctors would say, that's a perfectly reasonable decision. Dads have the right and the obligation to make those decisions. You're coming to a question, but there's an extent to which this is not an ethical decision. But I think my decision is at least my one. So you talked about letting the kid die. The other side is the other kids don't go to college. So they're in a world where families aren't supported when they suffer something like this. There are sacrifices made by the rest of the family regardless. They're just different. One person may sacrifice a life, the other is going to sacrifice a life. But I think it's worth pointing out that that is to some extent imposed by the structure of society rather than imposed as an ethical judgment. I agree. Almost 100% with that. I guess the only tweak I do on that is to say the availability of societal resources determines the point at which we permit the interests of a baby. Yeah. So that in America today, we would say, we don't care about your other kid's college tuition. We're going to treat this kid. And if you say no, we as a society are going to pay for it. We're going to take the kid away from you. You don't have the right to make that decision. It's in the child's best interests. And we feel so strongly about that as a political body that we're going to pay. They don't say that in India. Yeah. The other subtlety I would add to this is that there's a distinction between sacrifice and fear sacrifice. And there's somehow this model in one's thoughts about it are shaped by that. That how sacrifice when imposed is going to be distributed is yet another issue. So yes. And here's an example, too, of how it actually plays out. I say it's different in the West than in other countries. But when I've talked to neonatologists in India, they will sometimes say, OK, this family had a baby girl born at 35 weeks, five days. Kid needs two days in the NICU. Parents say, we're not going to pay for that. There's no other mechanism to pay for it. The doctors say, no, we can't. We're not going to let you let this baby die when there's an easily available treatment. Maybe that's a combination of your two points, severe sacrifice and relatively trivial cost. And the doctors advocate for the best interests of the patient, overriding the parents and family interests. I imagine that the three of them go to college. That's bad for the three that didn't go to college. But of course, we can get your doctor. So this idea is related to how one feels about sort of multiple smaller losses versus one big one. Yep. Dan Goldin says there's also, and this is the model he favors. He calls it the direct model. He says, who needs all these subtleties? Everybody in a family has interests. Just say what your interests are. It's the direct. Other family members' interests matter. They should be taken account. They may be competing. And it's appropriate to consider them. And he says, let's stop talking about best interests. Let's admit that there are lots of different interests that play. Put them on the table and honestly weigh them and say, and maybe this is sort of like the one kid dies versus three go to college. So how do they play out? Well, let's look at this one. Two month old presents for a well baby visit. The doctor notes baby didn't receive any vaccines at birth. Talks to the parents about this and they say, of course not. We don't believe in vaccines. We want the child to have any. We eat a vegan diet. We eat all organic food. That's the best protection against infectious disease. What else do you wanna talk about, Doc? What should the doctor do? What's in the child's best interest here? How many people think the child's best interest, the best interest of the child would best be served by giving the child the first DPT, the routine child? Okay, not everybody. Okay, most people, but not everybody. Why is it not in the baby's interest? Are there medical contraindications or vaccines dangerous? Yes. So they have interest. What are your policy of a baby? The fact is more harm to the baby because the baby's not getting any visits. And does that depend on how many other babies are getting immunizations? That is, are you depending on herd immunity to say it's not in the baby's interest? No. Mm-hmm. The children aren't getting any visits. Soon we'll have to have to. But I think to daily make parents with a two month first visit or a second visit is more problematic. And I'm going to take ladies' interests as all the kids in this area that use immunizations. And when measles, episodes of measles, she calls all these parents and says, measles is out there, don't you want immunization? And she gets some percentage of it. Mm-hmm. And then she convinces some percentage to do the NMR, so it's just measles. So there are ways to do it. But just to be clear about the structure of your argument, you raised your hand that it would be in the child's best interest to get the immunization. You did not. OK, OK. So you don't think it's in the child's best interest. Is that because you don't believe immunizations are safe? And you believe in that. But you think family interests and their values and their right to live by their own values outweighs what would be medically best for the child. Just trying to. And it preserves the doctor-patient relationship. Yes. We'll get to that. But so I mean, the kinds of reasons parents give, medical, confident, religious beliefs, personal beliefs, the kinds of reason doctors give are public health considerations, the interests of other family members, the interests of other patients in the waiting room, I put, but you could also put the interests of other kids in school. So is there a public health reason to say to parents, your beliefs and values are outweighed by my responsibility as your child's pediatrician to protect the other kids at school? I agree with the points just made. What I'm saying is that the school's role, I believe that the doctor's role is forcing immunizations exactly where they'll send them out the door and not get in health care. And so what I agree with is trying to work with the family to convince them over time once they trust me in all the life Lainey does and hope that they stop vaccines later. OK, so you'd try to preserve a trusting doctor-patient relationship, even if it means not doing what you think is best for the child because you think it's best for both the family and your relationship with the family. Right. OK. So a lot of docs now don't do what Lainey does. They say, you don't want immunizations? I'm not going to be your doctor. Here's names of three other doctors. Lainey Ross is a good one to call. She accepts all these patients. And why do they say it? When they've surveyed doctors, they say it's that there's a breakdown in trust. Parents don't trust me about this. How are they going to trust me about anything? I can't be a doctor for someone who doesn't trust my medical judgment. No. Fear of litigation. What if the kid gets measles? They come back and sue me. OK, document, document, document. Lack of commitment to a common standard, risk to other children, again in the waiting room or other places. And so I don't want this child in my practice for all these reasons. None of these have to do with best interests of the child. So this is a situation where the doctor-patient relationship is either based on some sort of notion of stewardship for society, some threshold of just being pissed off at parents who you disagree with, or some self-protective instincts about fear of litigation. But that's about the interests of the doctor or the practice or the other children in society. So doctors who do this are clearly not focused on the best interests of the child, whether keeping them in the practice or not is unclear. And some doctors say you shouldn't do it, because it's not in the child's interest. Smithing families will neither get the child vaccinated nor are sure that the child's other medical needs are met. So you have an obligation to do it. Others say, no, I have the right to set the parameters for who I take care of. Certainly the AMA's position on doctor-patient relationships support this. Doctors have a right to choose who they serve. So if you keep the child in the practice, you're essentially endorsing, accepting. And that's a compromise of your own moral integrity and maybe sense of professionalism. OK, perhaps. In the ER, since many children looked at the number of prescriptions that ended up in trash can or on, they left the ER, and it was a lot. So it was probably antibiotic growth. So one of the unique things about immunizations is because we give them in the office, we know who's refusing. But if you give someone a prescription, you have no idea whether they're taking it. That may be the complicity thing. I mean, I have to let this kid walk out the door knowing I had the Hib vaccine in my hand, and I just stood there. I can't live with myself. That's the irritation factor. Families who refuse are a pain in the ass. I mean, because you also feel an obligation to try to talk to them every damn time. Absolutely. I tell them I give them literature to explain. Yeah. Yes. And in fact, studies show the thing that's most likely to change people's minds is their pediatrician continually brow beating until they come around or an outbreak for some people, although not all people. Here are my views. Parents who refuse immunizations are selfish, they're wrong, they're bad people. They take advantage of herd immunity. They benefit from the burdens and very small risks that others take. The benefits to the child clearly outweigh the risks. If everyone immunizes their kids, everyone will be better off. It's the right thing to do. And so what? It still shouldn't destroy a trusting doctor-patient relationship because parents do all sorts of bad things and throw our prescriptions in the trash. And this idea that people who don't follow my every recommendation are going to lead to a terminal breakdown and trust in the doctor-patient relationship and my moral integrity is compromised and I'm complicit in bad care is a crock. And doctors who refuse to take care of kids who whose parents refuse are equally selfish because they're free riders just as much as the parents are. That is, I haven't met a doctor yet who said I don't take our vaccine hesitant kids who said, and I don't think any doctor should. These kids shouldn't get medical care. Let them die. Let them die of measles. Let them die of horrible death. No, what they do is they say, go to the university. Go to the safety net clinic. Dump them on some other doctor which shows a lack of professionalism and integrity. So every pediatrician ought to care for all children regardless of whether we. So that would be my view of what the doctor-patient relationship ought to do. The American Academy of Pediatrics does not agree with me. Well, they sort of do. Pediatricians should avoid discharging patients from practice solely because a parent refuses. But when a substantial level of distrust develops and significant differences in the philosophy of care, pediatrician may encourage the family to find another physician or practice. How waffling can you get? You can get more waffling. In 2016, the annual leadership forum of the Academy passed two resolutions. One saying the AAP will support pediatricians who discharge vaccine-refusing families. And the other saying the AAP will support pediatricians who continue to care for vaccine-refusing families. We love you all. I'm like the Canadian Pediatric Society who says some physicians may consider dismissal. However, refusing to care for the child would not be considered to be in the best interest of the child. We do not support doctors who dismiss patients from their practice. How much time do I have? When should I stop? OK, we'll sort of skip this then. This just shows that if, in fact, that happens, all the kids who refuse immunizations get concentrated in a few practices, which is a public health disaster and is more likely to lead to outbreaks, which is going to affect all kids. So it's not just yet. How about this one? This one we sort of talked about. This gets into family interests and stuff. Kid has a meduloblastoma. Can get routine chemo and radiation locally. Or you can get a better treatment 500 miles away. Proton beam therapy, which reduces neurotoxicity and has had better cognitive outcomes long term. What's in the best interest of the child? I think it's a proton beam therapy 500 miles away. Do parents have an obligation to do it? Why not? It was an immediate response, a gut instinct. So it's a family, the family interest would say the price is too high. And perhaps the benefit is not significant enough. What's a few IQ points, really? Yeah? There is a similar kind of cure for this. Our proton beam therapy is 30 miles away, but it was outside. There was no Romer-McDonald pass where the proton beam therapy is. Mom wanted proton beam therapy, and fundamentally because of her sociotherapy, she couldn't get it. So that's more of a justice issue than Dr. Potion. The doctors wanted to give it, the mom wanted to get it. It was best for the kid, but the resources, the societal resources were not in place to provide it. This one, I think, reflects one of the oldest distinctions in medical ethics. Goes back to 12th century Catholic moral theology of ordinary versus extraordinary care, which in Catholic moral theology is not based on whether the treatment itself is extraordinary, but on the entire set of circumstances. Person in place, I forget the exact words, but it's very case-specific moral reasoning that looks at the burdens for this family, for this treatment, for this child, for this disease, and says, if those add up to too much, it's OK to forego even life-sustaining treatment. And it does reflect, I think, this idea of family interest, which is what you said, that doing too much for one family member can be detrimental to others. What about when doctors disagree? The baby who had a prenatal diagnosis of complex congenital heart disease at 22 weeks of gestation said the prognosis was guarded. The parents didn't want to have an abortion. They said, well, carry the baby to term, and we'll do perinatal palliative care after the baby's born. Baby's born, the postnatal cardiologist who these days is different from the prenatal cardiologist goes in, assesses the baby, and says, we can fix this. It would be medical neglect to let this baby die. Parents either sign this consent or will take you to court. Which medical opinion should prevail? Parents call the prenatal cardiologist who comes by and says, I still agree. I think palliative care is completely appropriate. What's in the best interest of the child? How much does it cost? So because we're sort of rushing, all these cases are meant to illustrate these peculiar complexities of parental decision making. And let me just rush through this last part and then we'll stop. And if we have time, take a few questions. I mean, I think one of the other key things that makes pediatrics different, not wildly different, maybe not starkly dichotomously different. But the parent's emotional experience taking care of their own sick child, I think, is also fundamentally different than another adult who's a legally empowered surrogate. I mean, you love your spouse when they're sick. It's emotionally traumatizing. But I think when parents have a sick baby, particularly mothers, it's a whole different thing. And parents respond in interesting and complicated ways. A lot of these are from parents who are quite medically sophisticated. Felicia Kohn is a bioethicist, does ethics consults in the NICU and had a baby born with a complex congenital heart disease and said everything she thought she knew was out the window when it was her baby I needed to have this surgeon hold my hand, draw me pictures, and answer questions that I wasn't even capable of asking. Ravicky Forman, who had preemie twins. The world receded. Everything took place in slow motion and was viewed as down the wrong end of a long telescope. So much was unfamiliar that if I was asked my name, I had to think for long moments. Think of these quotes in light of the idea that we're going to parents to ask them to make really complicated medical decisions. Another parent of a preemie, I had crazy thoughts if she ever got out of this box, would she know I was her mother? If she died, would I get a birth certificate? They're a bit funeral. Box of ashes, what size box did she recognize me? Was she afraid? Did she wonder where I'd gone? Some parents want to let their babies die. That's the great novel about a dad who had to make a decision for his baby with a severe congenital anomaly. Oh, he won the Nobel Prize for this. Some parents want more treatment than doctors think is appropriate. Some parents totally beat the odds, have a tiny preemie who's predicted not to survive and survives and thrives. And they're grateful and talk about their miracle baby. Some parents changed their minds. Again, Vicki Forman, when her twins were born, says, I don't want resuscitation. And then two days later, she writes, something had changed. I had come to accept these compromised babies as mine. My milk had come in. I needed to decide if I would pump or not, if there was a purpose to that act of motherhood and the whole mess felt oddly faded. So what do you, well, we'll take it. So what do you do on day one if you know that this is a common reaction? And somebody says, let my babies die on day one. Are they? Do parents have decisional capacity to make those decisions? Some parents are just terrified. I mean, NICUs are terrifying places. Here's one from Annie Jeanvié, who's a neonatologist and had a tiny preemie and talks about how when her own baby was sick in the NICU, she hated to go visit. And she went because she wanted to prove to the social workers that she was bonding, even though she was having nightmares every night. So in thinking about another one of these unique aspects of doctor-patient relationship in pediatrics, it's the unique vulnerability of parents when they have a critical baby that I think demands sort of a different sort of psychological insight, understanding, and approach to shared decision-making than in most cases involving adults. One last one, then we'll be done. It's also that decision-making is a process, not an event. So another one of the things that's changed in medicine across the board is social media. And some of the best cases and reports on cases we have now come from parents' blogs. So this is a case entirely taken from a parent blog, which you could go to, faithhopeandmommyhood.blogspot.com, where they talked about a case where there was an ultrasound at 10 weeks of gestation showing anomalies. Genetic testing was normal. 26 weeks, more anomalies were discovered. At 28 weeks, went to a fetal health center where there were experts in this. They did further evaluation, and it looked bad. So after they had a big consult, multidisciplinary consult, they said, Doc said, with her hernia cleft heart issues, she'll be struggling too hard to breathe, too much for her baby body to bear. We're going to have our baby, and we're prepared to hold her until she dies. Her care plan now consists of making her as comfortable as possible. Whether it's going to be minutes, hours, or a day will not be known until she's here on July 11. On July 31, we don't know how Piper will be at delivery. We pray, and are thankful that we'll have time to experience her as a family together, no matter how long she's here. She was born two weeks later. The echo showed that her heart disease was not quite as bad as the prenatal echo. Her heart's able to sustain her body. Now we can start to deal with trying to sustain her oxygen and CO2, and pretty soon she'll be able to have surgery, and they'll fix it. First thing is to fix the congenital diaphragmatic hernia, and then we'll do her cleft, and then we'll do her heart. And in August, things are looking good, although there's no telling how long this journey will be. And on their blog, they posted pictures of mom and dad and little Piper with her oxygen and her cleft lip. Pictures of her one week birthday, there she is. There she is with her sister, who came into the NICU, and they were bonding, but her hospital course was not straightforward. September, she got a G-tube. Actually, in August, she got off the vent. October, she had aspiration pneumonia. And back on the vent, in December, she had a trach. She had persistent pulmonary hypertension. She got a GJ tube, and now at eight months of age, she's still in the NICU on a vent. You don't have cases like this here, do you? Still hadn't had any surgery. So are we doing what's in the baby's best interest here? Parents look pretty happy. Baby doesn't look to be suffering. It's cost at least $1 million so far, with about a 1% chance of a good outcome. Should we stop? How the parent's enough is enough, based on either what's in Piper's best interest for some resource allocation? How many say, time to let little Piper go home to her maker? Nobody. Parents do not agree there. They're totally on board. Keep going. And they did. Eventually, Piper got worse and worse, says was the most likely outcome. And they wrote a beautiful thing on the blog about taking her off the lentin, letting her die, holding her the whole time. And we're grateful for every day that she was with them. We did not lose this battle. This was not a tragedy. She did not fight for nothing. So prenatal notice is uncertain. There's always hope. I'll lead to prolonged unsuccessful treatment. Another complicated example of not going to do this. Essence of doctor-patient relationship pediatrics primarily focus on the interests of the patient, but those are present near future and distant future. But they're also crucial considerations of parent and family. There's a public health orientation. I think it's unlike any other relationship in medicine. And amazingly, given all these complexities, it works pretty well most of the time. And those are the slides I skipped that actually looked at what were perceived as intractable disagreements. And it turns out most intractable disagreements become tractable. OK, thanks. That's children's mercy. Thank you. The final fact, the answer is in some of the last few slides that doctor-patient relationship basically is on trust, that the trust has to be felt between the doctor and every patient, including the two-year-old child, so that if you do not have and so much of it is cited, not as spoken, that if you do not develop relationship between the doctor and the child of two-year-old, then it cannot work. In the beginning, when you see the child, you try to test them, they cry and all these things. But I'm sure you have noticed in legitimate children that the trust is there. As soon as you get to them, they leave their sleep after to get their blood and their brain, they don't have to have the tape. And the person who wasn't sure wanted to have a spinal tap, the young man, maybe he is smarter than a double. Without knowing anybody, they go ahead. He's smart, he doesn't trust you. And if the anesthesiologist maybe have brought in the day before, if you get the relationship developed, then we'll make a big difference. Or if the parents, if the relationships you have developed, they don't help you for influenza or whatever injection. So we need to learn about what the patient think of us rather than what we think of them. Great points. I mean, I also think one of the reasons why most of this works pretty well most of the time is because most of the doctors who work with children develop skills in building that sort of trust with the kids and with the parents. And most of the time, interests are aligned. So I mean, this happens in all of bioethics where you pick out the relatively rare cases where there are disagreements to try to tease out when there is a breakdown in trust, when there is a disagreement between parent and child, when there is a disagreement between doctors, which way do you tip in a particular case? Yeah, no, I think you're right. I think it sounds like it. So if you want some more excellent discussion, you can keep it down for a while. Here you go, Jim. There's also a big problem. I'm going to question this now on vaccine hesitancy. She's a candidate for an investment fairtaker who has written an excellent book in terms of strategies about how to talk to the man. Let me just say a word. Since you brought it up, every month I added a series in the journal Pediatrics, which is what this collection that I was talking about is. But if you have cases that raise controversies, send them to me. Because all the cases we do in that series are real cases that people have seen other cases than write to me and say, I have a good one. And what we do is summarize the case in 300 words and then get two or three people to write comments on it. So send me cases. Get published, get famous. No RV use though. Thanks.