John Lantos MD: "The Doctor-Patient Relationship in Pediatrics" 10/16/19

Dr. Mark Siegler

Good afternoon.

Dr. Mark Siegler

On behalf of the McLean Center for Clinical Medical Ethics, the Center for Health and the Social Sciences, and the Buxbaum 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

Dr. Mark Siegler

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, D.C. 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 Pediatrics 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 Pediatri...

Dr. Mark Siegler

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's 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.

Dr. John Lantos

Okay. 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.

Dr. John Lantos

Yes, that was a virtual encounter. But great to be back. Great to see so many friends. A little daunting. But I'm 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 kind of 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 okay 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.

Dr. John Lantos

What's that? 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's expected to be a surrogate decision maker since, as we'll talk about, pediatric doctor-patient relationship is really a doctor-patient-parent relationship. And then a discussion of the ways that cases can inform theory, and theory might help us think about cases. So Lainey 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 pediatric, no. Yes. You're shaking your head.

Dr. John Lantos

In pediatrics, the principle is the best interests of the child. You could think of this in Beecham and Children's terms, adult medicine's 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 Doe 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.

Dr. John Lantos

I'm so disappointed Lainey isn't here. She'd be shouting at me already. But

Dr. John Lantos

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. 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 baby is our 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 assent 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 assent, try to get them to agree. And then there are all these questions Like, what does that really mean? And what if their parents disagree? And we'll talk about that a little bit.

Dr. John Lantos

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, of the parents or the siblings, conflict with the best interests of the child? That, I think, is somewhat unique to pediatrics. Yes, sir?

Advertisement voice

Yeah, John's first point. Sure. If the best interest of the child, let's take a theoretical example of a treatment that costs $1 million. of being successful.

Dr. John Lantos

The best thing for the child is to take the 1% chance. Maybe. And that is not a question for the community, necessarily. So I would say that that is not controversial.

David Meltzer

You say the best thing for the child is that they have foundation. I think there's a real question here of

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assets of resource allocation and the cost

Dr. John Lantos

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.

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But isn't that unfair to the clinician, the physician making the decision? Shouldn't somebody else be setting...

Dr. John Lantos

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. I was going to answer this question for you in a slightly different way. Okay. which is

David Meltzer

that it's certainly controversial, but it's no differentially controversial between that issue in children versus that issue in adults. In other words, the trade-off.

Dr. John Lantos

That's a good way.

David Meltzer

And so another way to frame, I think, where you're coming from is sort of what is unique about the doctor-patient relationship in children as opposed to the doctor-patient relationship in adults? And this issue is one that I'm not sure separates those two.

Dr. John Lantos

That's a great point. If 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 impedes. Impedes, I think, and if the SMA example's a good one, it would turn not on the million-dollar price tag, but on the 1% and the question of whether anything's worth doing with a 1% chance.

Dr. John Lantos

Two other considerations I think that make peds 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 gonna be like 20 years down the road. Six month outcomes, maybe five year outcomes, but in PEDS there's a much longer term horizon, thinking about the adult to be. And another thing that's unique about PEDS 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

David Meltzer

at this maybe more controversial

Dr. John Lantos

and

David Meltzer

problematic, 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.

Dr. John Lantos

Okay, I think that's true.

David Meltzer

So then there's a life that would never potentially be brought into being 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.

Dr. John Lantos

And so would have an impact on the doctor-patient-parent relationship after the diagnosis of Tay-Sachs or Gaucher's disease? Or

David Meltzer

a prenatal diagnosis.

Dr. John Lantos

And you would say, you know, we need to talk about what's best for your...

David Meltzer

I'm just saying that, you know, 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 the decisions you make about one person affects others. Here we're talking about lives potentially that don't even exist by any remote definition, but would be affected by a decision.

Dr. John Lantos

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. Thank you. I'm going to add that one.

Dr. John Lantos

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 sarcoma is 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.

Dr. John Lantos

What do you think? Yes? I think if the teen understands the pros and the cons, that you have to take the teen's stance. Parents say, she's just scared of needles.

Dr. John Lantos

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.

Dr. John Lantos

Patients are presumed to lack decisional capacity. So what's best for the team? And if you don't tell her, is that really lying? Deception. I

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don't know that it's

Dr. John Lantos

best. 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 erode 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.

Dr. John Lantos

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 restraints. Yeah? There's also increased risk of

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having a epidural in a patient who's sedated versus an

Dr. John Lantos

unsedated patient.

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And that's real. And so there's many anesthesiologists that aren't going to be willing to do this in an anesthetized child. Because our pediatric anesthesiologists, even in small children, They give some versed, but they do not fully anesthetize.

Dr. John Lantos

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.

Advertisement voice

Right. Treating something like pain, which is uniquely the child themselves is going to feel, not the parents, that she should have some self-determination of that, and that her ascent is essential, and that she can change

Dr. John Lantos

her mind, but she has to wait and then put an epidural in. Put the epidural in then, yep. I think that would

Dr. John Lantos

be really unethical. Okay, 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 lifetime autonomy issues. Parents have rights and responsibilities, even after the child is 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?

Dr. Mark Siegler

Why did the case

Dr. John Lantos

not involve control of pain, but rather it

Dr. Mark Siegler

was a life or death decision

Dr. John Lantos

in

Dr. Mark Siegler

the same age group?

Dr. John Lantos

What if?

Dr. Mark Siegler

I think the parental decision would overwhelm.

Dr. John Lantos

For these reasons.

Dr. Mark Siegler

Yeah, reasons like that could overwhelm the child's wishes as a result of the child's death or an incurable defect.

Dr. John Lantos

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.

Audience commenter reframing the child-versus-parent decision criterion

Well, I want to phrase it differently. It's basically taking away your first reason to defer to the parent. If it's not going to affect the child's lifetime autonomy issues, and it's really only about a short-term issue, then perhaps it's appropriate, I think, is what we're saying to make work a child-based decision. Or a sentence.

Dr. John Lantos

Here's what some other people said, and this is forthcoming in pediatrics where we have a series where we present cases and then you get people to comment. So we got a bunch of pediatric anesthesiologists to write about this. Ivor Berkowitz is at Hopkins. He said, no way, a decision to deny and disregard developing autonomy is disrespectful. It will affect her long-term trust in the medical. Essentially saying, I'm taking the longer-term view We're not just looking at her short-term interests, but

Dr. John Lantos

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. Yeah?

Pediatric surgeon commenting on disorders-of-sexual-development decisions

So I'm a pediatric surgeon, and I have another example of patients

Dr. John Lantos

born with disorders of sexual development. And in the old days, we used to say, it's easier to make a girl than a boy.

Dr. John Lantos

And not tell them in the old

Pediatric surgeon commenting on disorders-of-sexual-development decisions

days.

Dr. John Lantos

Some people know it better than others.

Pediatric surgeon commenting on disorders-of-sexual-development decisions

Sometimes we have to make decisions early because of other medical conditions. Right now, there's a big trend in all the centers to wait. until the child was old enough to ascend and understand what was going on with their bodies and to help and participate in the decision making. But the assertion that we had was the physician, instead of the parents, we had the counsel

Dr. John Lantos

of the parents as to what we thought was in 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 congenital adrenal hyperplasia and clitoromegaly XX. Say to the parents, parents say, like, 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. No. The systems have to be in place for us to support the families to do a huge amount of education. OK, you've had five years.

Pediatric surgeon commenting on disorders-of-sexual-development decisions

And to support them until a child is

Dr. John Lantos

Sure, always.

Dr. John Lantos

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. It's not going to happen, so we'll never know. And we still have to decide. You either do the surgery or you don't. Okay. It's a great example because it... If you get out of the newborn period and the kid's getting older, and eventually 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, and their parents disagree.

Dr. John Lantos

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. 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 could do a regional block. You could do all sorts of things.

Dr. Mark Siegler

I think in addition to Deborah's point about at what age have children achieved the ability or the right to assent to a decision. There is this other point that it's not just kids wandering around. But what is the dividing line at which we would permit a child with the ability to assent to make such a decision for himself or herself? And at what kind of situation? Would we not deliver on

Dr. John Lantos

that? 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's not quite as good? What if the alternative's 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.

Dr. John Lantos

All that sounds good. Teens, doctors, and parents eventually work these things out most of the time. In this case, the anesthetist refused. They talked to the parents. They explained that there were alternatives. The problem, parents got it, they didn't do the epidural, it was all good. And when that happens, all the principles come into harmony and we don't have to have a conflict. So what happens, though, when they don't, when the problem persists? Who should win and why? And is 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 peds. The role of the family for a pediatric patient is not like the role of other surrogates. A 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

Dr. John Lantos

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 masks, wide interests, 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.

Dr. John Lantos

Oxygen mask model. Wide interests, Dan Grohl says, In doing well by my child, I'm at the very same time doing well by myself. My interests can and plausibly 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 interest model one where he says, the family

Dr. John Lantos

is an entity that has its own moral claims, almost as a, he

Dr. Mark Siegler

calls

Dr. John Lantos

it

Dr. Mark Siegler

a

Dr. John Lantos

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.

Dr. John Lantos

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.

Dr. John Lantos

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, you know, we have four kids. I'm paying for school for three of them and the fourth one is a preemie 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

David Meltzer

those decisions. So you talked about letting the kid die. The other side is the other kids don't go to college. So there's no ethical judgment there. In a world where families aren't supported when they suffer something like this, there are psychological by the rest of the family regardless, which is different. One person may sacrifice a life, the others may sacrifice. 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.

Dr. John Lantos

I agree almost 100% with that. I guess the only tweak I do on that is to say, Sort of 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 interest. And we feel so strongly about that as a political body that we're

David Meltzer

going to pay.

Dr. John Lantos

They don't say that in India.

David Meltzer

Yeah. The other subtlety I would add to this is that there's a distinction between sacrifice and sphere sacrifice. Yeah. 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

Dr. John Lantos

distributed. 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, okay, 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. So 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.

David Meltzer

I meant it within the context of the family. One child dies, the other three don't go to college. That's bad for the three that didn't go to college, but it's worse for the two who died. So that there's some, this idea is related to how one feels about sort of multiple smaller losses versus one big one.

Dr. John Lantos

Yep.

Dr. John Lantos

Dan Grohl then 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 into 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 at 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?

Dr. John Lantos

Well, let's look at this one. A two-month-old presents for a well-baby visit. Doctor notes the 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.

Dr. John Lantos

That's the best protection against infectious disease. What else do you want to talk about, doc? What should the doctor do? What's in the child's best interest here?

Dr. John Lantos

How many people think the best interest of the child would best be served by giving the child the first DPT, the routine child?

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Not everybody.

Dr. John Lantos

OK, most people, but not everybody. Why is it not in the baby's interest? Are there medical contraindications? Are vaccines dangerous? Yes. So

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they have interests. So that's...

Dr. John Lantos

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?

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Mm-hmm.

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But

Dr. John Lantos

I think to alienate

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parents in a two-month first visit or second visit

Dr. John Lantos

is more problematic. And I'm going to

Advertisement voice

take Lainey's interests. Lainey has all the kids in this area that refuse immunizations. And when measles, episodes of measles, she calls all these parents and says, measles is out there. Don't you want an immunization? And she gets 7% of the chance.

Dr. John Lantos

Mm-hmm.

Pediatric surgeon commenting on disorders-of-sexual-development decisions

And then she convinces

Dr. John Lantos

some percentage to do the MMRs, which is. 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. So you don't think it's in the child's best interest. Is that because you don't believe immunizations are safe? 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... Okay. And it preserves the doctor-patient relationship. Yes. I have a

Audience clinician favoring longitudinal trust with vaccine-refusing families

question. I understand that, but what about

Dr. John Lantos

school? We'll get to that. But so, I mean, the kinds of reasons parents give, medical, religious beliefs, personal beliefs, the kinds of reasons 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?

Audience clinician favoring longitudinal trust with vaccine-refusing families

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 organizations exactly what will send them out the door and not getting health care. And so what I agree with is trying to work with the family to convince them over time once they trust me, all the like-mindedness, and hope that they stop vaccines.

Dr. John Lantos

Okay, 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. Okay. So a lot of docs now don't do what Laney 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. If 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.

Dr. John Lantos

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,

Dr. John Lantos

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 interest 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. Dismissing families will neither get the child vaccinated nor assure 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.

Dr. John Lantos

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?

David Meltzer

OK.

Dr. John Lantos

Perhaps. I mean, looking at this quote,

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my ER at Cincinnati Children's looked at the number of prescriptions that ended up in the trash can or

Dr. John Lantos

on the ground when they left the ER, and it was a lot. It was probably antibiotic prescriptions for an ear, 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.

Audience clinician favoring longitudinal trust with vaccine-refusing families

That's the irritation factor. Families who refuse are a pain in the ass. I mean, because you

Dr. John Lantos

also feel an obligation to try to talk to them every damn time. Yeah, yeah.

Dr. John Lantos

Yes, and in fact, studies show the thing that's most likely to change people's minds is their pediatrician continually browbeating 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 in trust in the doctor-patient relationship and my moral integrity is compromised and I'm complicit in bad care is a crock.

Dr. John Lantos

And doctors who refuse to take care of kids 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 says, 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 a 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. 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, the pediatrician may encourage the family to find another physician or practice. How waffling can you get?

Dr. John Lantos

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.

Dr. John Lantos

Unlike 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?

Dr. John Lantos

When should I stop?

Dr. John Lantos

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, yeah. How about this one? This one we sort of talked about. This gets into family interests and stuff. Kid has a medulloblastoma, 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?

Dr. John Lantos

I think the proton beam, therapy 500 miles away. Do parents have an obligation to do it? Why not?

Dr. John Lantos

It was an immediate response, a gut instinct.

Dr. John Lantos

So 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? What bothers

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me about this, there is a similar child. Our proton therapy is 30 miles

Dr. John Lantos

away. But it was a child who lived on the south side.

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So

Dr. John Lantos

that's more of a justice issue than a doctor-patient relationship. 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, 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. That's what you said, that doing too much for one family member can be detrimental. What about when doctors disagree? A

Dr. John Lantos

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, we'll 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 we'll take you to court. Which medical opinion should prevail?

Dr. John Lantos

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, I mean, 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 parents' 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.

Dr. John Lantos

And parents respond in interesting and complicated ways. A lot of these are from parents who are quite medically sophisticated. Felicia Cohn 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 the surgeon hold my hand, draw me pictures, and answer questions that I wasn't even capable of asking. Or Vicki Foreman, 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? There'd be a 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. There's a 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.

Dr. John Lantos

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 change their minds. Again, Vicki Foreman, 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 fated. 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. Do parents have decisional capacity to make those decisions? Some parents are just terrified. NICUs are terrifying places. Here's one from Annie Janvier, 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.

Dr. John Lantos

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 critically a 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.

Dr. John Lantos

One last one, then we'll be done. It's also that decision-making is a process, not an event. So 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 a ultrasound at 10 weeks of gestation, showing anomalies. Genetic testing was normal. 26 weeks, more anomalies were discovered. At 28 weeks, we 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, the doc said with her hernia, cleft heart issues, she'll be struggling too hard to breathe.

Dr. John Lantos

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 11th. On July 31st, 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? No. Still hadn't had any. surgery. So are we doing what's in the baby's best interest here?

Dr. John Lantos

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, tell the parents enough is enough? based on either what's in Piper's best interest or some resource allocation?

Dr. John Lantos

How many say time to let little Piper

Dr. John Lantos

go home to her maker?

Dr. John Lantos

Nobody.

Dr. John Lantos

Parents do not agree. They're totally on board. Keep going. And they did. Eventually, Piper got worse and worse, as was the most likely outcome. And they wrote a beautiful thing on the blog about taking her off the vent and letting her die, holding her the whole time, and were 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 nurses are uncertain. There's always hope. Home may lead to prolonged unsuccessful treatment. Another complicated example of doctor, I'm not gonna do this.

Dr. John Lantos

Essence of doctor-patient relationship, pediatrics, primary focus on the interest 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.

Audience clinician commenting on pediatric procedural trust

Spinal tap, vaccinations. The answer is in some of the last few slides that you talked about. That doctor-patient relationship basically is on trust. That the trust has to be known between the doctor and every patient, including the two-year-old child. So that if you do not have a, and so much of it is cited, not spoken, that if you do not develop relationship with a doctor and a child of two year old, you 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 leukemia children that the trust is there As soon as you get to them, they leave their sleep up to get their blood, and they bring their hand out of the cave. And the person who wasn't sure wanted to have a spinal tap, the young man. Maybe he is smarter than a dog without knowing anybody. He said, go ahead. He's smart. He doesn't trust you. And if the anesthesiologist maybe have brought him the day before, a few days, the relationship developed,

Audience clinician commenting on pediatric procedural trust

then we'll make a big difference. Or if the parents, if the relationship had developed, they don't doubt you for influenza or whatever injection. So we need a lot to learn about how, what the patient think of us. rather than what we think of them.

Dr. John Lantos

Great points. I mean, I also think one of the reasons why most of this works pretty well most of the time is because

Dr. John Lantos

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.

Dr. John Lantos

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. Like 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? But yeah, no, I think you're right.

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I think it's so much in advertising budgets for huge graphics amounts for a service. So if you want some more There you go, Jeff..

Dr. John Lantos

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 the other cases and 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 RVUs, though.

Dr. John Lantos

Thanks.