#404 - 🔵 [NEO CONFERENCE] - What guides us when parents disagree on medical care? (Dr. Mark Mercurio)

Hello friends 👋

When parents fundamentally disagree on life-saving interventions in the delivery room, how do clinical teams decide the next step? Live from the NEO Conference, Ben and Daphna sit down with Dr. Mark Mercurio, Executive Director of the new Center for Pediatric Bioethics at Boston Children’s Hospital. Dr. Mercurio dissects a highly complex ethical case regarding parental disagreement over resuscitation at the border of viability. Emphasizing the distinction between parental "preference" and parental "judgment," he explores the necessity of clinical humility, the hidden margins of error in gestational age dating, and how admitting our own medical uncertainty is the first step toward honest family counseling.

Link to episode on youtube: https://youtu.be/djM0DQsiEi8

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Short Bio: Mark R. Mercurio, MD, MA is a physician and bioethics lead at Boston Children's Hospital. He received his MD from the College of Physicians and Surgeons at Columbia University. He received his BA in Biochemical Sciences from Princeton University, and an MA in Philosophy from Brown. His work has primarily been in pediatric ethics. Bioethical areas of interest include end-of-life care, approaches to critical decision-making, and education. He has published widely, and has received numerous awards including the William G. Bartholome Award for Ethical Excellence from the American Academy of Pediatrics.

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The transcript of today's episode can be found below 👇

Ben Courchia MD (00:00.578)

Hello everybody, welcome back to the Incubator Podcast live at the NEO conference. We are joined by the esteemed Dr. Mark Mercurio. Dr. Mercurio, thank you so much for making time. Of course, you are coming from Boston Children's. You have a very interesting session today. Daphna, can you remind us that the...

Mark Mercurio MD (00:09.998)

Thanks for the invitation.

Daphna Yasova Barbeau MD (00:19.394)

Sure, I will. Everybody's been looking forward to it, actually. We've been asking people what they're looking forward to, and they wanted to hear the ethics talk on parental disagreement on medical treatment. So absolutely critical in today's climate in the NICU.

Mark Mercurio MD (00:37.486)

It's a difficult problem, no doubt.

Daphna Yasova Barbeau MD (00:40.226)

Yeah. Was this a requested talk or is this something that you wanted to give?

Mark Mercurio MD (00:45.376)

It was a requested talk. I published a paper last year with one of my fellows, Alice Baker, on this issue, on a question in the newborn ICU where the mother and the father disagree on whether or not resuscitation should be attempted in a case where we would have gone with whatever the parents wanted.

Ben Courchia MD (01:05.383)

That paper that's not on the podcast.

Daphna Yasova Barbeau MD (01:07.031)

Yeah, I was just going to pull up the episode. But actually, would you mind walking us through that case?

Mark Mercurio MD (01:13.81)

So that case and that paper, I can take you through that with some changes made to respect confidentiality. Sure. Because I probably remember it wrong because the case itself was a few years ago now. But I can certainly walk through the case to give you an idea of what we're going to talk about today in just a couple of hours. It involves a child who is at borderline viability, a woman who comes in with her husband, and it is expected that she's going to deliver very soon. And the gestational age is such that we would offer resuscitation.

I've spoken about this before and written about it and bored everybody with it. Basically, to try and simplify our approach to this, to say that some things we consider impermissible, we simply won't do, and some things we consider obligatory. And some things are kind of in between in that zone of permissibility, where it's permissible but not really required, and where we give parents a lot of choice. That's what Lynn Gillam, my colleague in Australia, calls the zone of parental discretion, which is a nice way to think of it. So when a baby is expected in that zone, and the AAP or UpToDate might refer to that as, say, 22 to 25 weeks in that area, or 22 to 24 weeks, might say, here we give parents the choice of whether or not we're going to attempt resuscitation or just provide comfort measures only.

And this is a conversation I think every neonatologist has had many times. This is hard work; this is a hard part of our job. Of course, it's much harder work for the parents. This is a really difficult time. So when we sit with these folks, often under time pressure, and say, "Well, should we or should we not try to resuscitate this baby?" I think in the paper we made the baby 23 weeks, and I think in my talk today we made the baby 22 weeks. But for either 22 or 23, I think most centers in the country would give parents a choice.

Mark Mercurio MD (03:13.13)

So what happened in this case was that when the parents were initially approached by the neonatology team at the request of maternal-fetal medicine, one parent said, "Okay, yes, please do attempt resuscitation." They were given the information—I don't want to bore folks, your audience is very familiar with what we do. We tell them what to expect clinically. We tell them the likely outcome if we try to resuscitate, recognizing there are wide error bars around our ability to predict these things. But we talk to them about the data in terms of survival and in terms of disability. We talk about the likely hospital stay and the things that the kid would encounter, and that sort of thing, and then answer questions they have, and then ultimately with them try to reach a decision about whether or not to move forward.

And I think most neonatologists, for the most part, at 22 or 23 weeks certainly, would say to parents, "And so, what would you like us to do?" Which is, of course, a terrible burden on the parents. Absolutely. But rather than do that, to say to them, "Well, here's what we're going to do," is maybe perhaps less of a burden, but more of a usurpation of their parental authority, their right to decide for their child. So we have these conversations. Again, I just touched on it briefly. We can talk about that in greater length if you want. But I suspect your audience knows how to have these conversations. One is patient. One presents the data in an unhurried fashion, in a not overly complex fashion. One talks about likelihoods.

And then, we give the parents a choice. What we encountered in this case was one parent said, "Yes, resuscitate," and the other parent said, "No, don't." The staff and the clinical teams sat for an hour not quite sure what to do, and so I was approached—I believe I was chief at that time—and also because of my background in medical ethics, asked how we should handle this. And so we spent some time working through how to handle it, and... pardon me.

Daphna Yasova Barbeau MD (05:19.438)

It's okay. You're getting a consult right now.

Ben Courchia MD (05:20.227)

Definitely.

Mark Mercurio MD (05:23.15)

I hope not.

Ben Courchia MD (05:24.206)

Where people can find that paper.

Daphna Yasova Barbeau MD (05:25.934)

Yes, actually we've reviewed a number of your papers. I actually wanted to talk about this one next.

Mark Mercurio MD (05:33.134)

Bring it on, you should let me read them, you know. Could have given me a chance.

Daphna Yasova Barbeau MD (05:36.49)

Well, this is what I actually said today, but really, that was a lie. I just wanted to have you on. We've been wanting to have you on for some time.

Ben Courchia MD (05:38.752)

We were going to bring him for the talk.

Mark Mercurio MD (05:46.078)

I can't believe it.

Ben Courchia MD (05:49.966)

Maybe we can actually invite you on the podcast for a longer interview down the road.

Mark Mercurio MD (05:54.35)

Oh sure, well let's see how this one goes first.

Daphna Yasova Barbeau MD (05:57.164)

Well, one of the other papers that we highlighted was from Pediatrics in 2024, "The Value of Parental Judgment in the Ethical Gray Zone of Periviability." Words matter. And I thought that was such an important title, because we can go through all the steps. But there's something about the way we say things to families, the words that we use, the words we avoid sometimes, that seem to really make a difference. And I think when I was training, that difference was...

Ben Courchia MD (06:17.292)

To be avoided.

Daphna Yasova Barbeau MD (06:26.37)

Which decision was the parent going to make. And as I've matured in my own clinical practice, it was, how do we make the parents comfortable in the decision that they choose? So tell us a little bit about where do we go wrong with the words used.

Mark Mercurio MD (06:46.718)

So to give credit where credit is due, this is a paper I wrote with Matt Drago. That's correct. Yes, so this is mostly Matt's work. So just in case Matt's listening, he might think, "What's going on here?" This was more Matt's work than mine. I was happy to work with him on it, but this is mostly his work, so he should get credit for that. He did a good job. It was an insightful thing.

There are words we use. And I think that paper was largely about words we use with each other, not even words we use with parents. The parents' preference as opposed to the parents' decision or the parents' judgment. And that was Matt's insight and we wrote about it. I thought it was a good one because I think it has to do with taking the parental decision or parental judgment seriously. We talk about parental preference, but our judgment.

Much of what I'm going to talk about today is about wisdom and the wisdom that we feel we have, and I think that we might do better to aim for humility. Wisdom is kind of aiming pretty high. I think I learned in ninth grade the Oracle saying no man is wiser than Socrates, not just because Socrates is the one who realized he didn't really know that much while everybody else thought they knew things. I think that was a wise insight, that we need to be honest about what we do or don't know. And I worry that we sometimes approach these decisions with a sense of, "I know the data." Well, and I'll talk about this today, you might not know the data as well as you think you know it. For example, what's the survival at 22 weeks? Well, depending on who you're...

Ben Courchia MD (08:16.322)

That's a great insight.

Daphna Yasova Barbeau MD (08:36.268)

Tell us the pearls now from your talk. You don't have to give us all of it away.

Mark Mercurio MD (08:40.898)

Whose data do you want? The survival at 22 weeks is somewhere between 0 and 90 percent. Okay, depending on what database you're quoting. That's right. And not just what individual, even what nations. I mean, it's dramatically different between certain countries in Europe and Japan, for example, where they are very aggressive and where they probably have the highest percent survival and they have it in their national network. But then at individual places like Nagano Children's Hospital, again, it's a single center so we have to approach these data with caution. But they've shown many times over the years that they can save most of these kids. As can happen in the US, the results at a place like Iowa stand out as being very different than most other places in the US.

So we have to be a little bit cautious in thinking we know what the likely outcomes are. And I think we need to present it that way to parents, to let them know there's a degree of uncertainty. I mean, it's a difficult line to walk because the parents are looking for us to have confidence and looking for us to know. And I think that in areas where we do have confidence and where we do know, that's a beautiful thing. It's good for everybody. But when we don't really know but nevertheless project confidence, I think some parents may take comfort in that, but I'm not sure that's the right way to go.

If you think about it, as the attending, if I had to go—and full disclosure here, I stepped down from clinical neonatology a couple years ago, so I'm talking about ancient history, like the early 2020s. Think for yourselves, if you get called to speak to somebody and they say, "Well, the parents really want to know what to expect," and what you have is a child who is 29 weeks and who has RDS and has been intubated and just got his first dose of surfactant for RDS. And the parents want to know what to expect in terms of the course of his lung disease. I'm betting that when you go in there to have that conversation, you're pretty comfortable because you've seen so many kids go through this course. And you're too smart to tell them, "I guarantee that everything's going to be fine." You're too smart to tell them that. But you're comfortable telling them, "You know what, the majority of these kids really do well."

Daphna Yasova Barbeau MD (10:55.746)

Made that mistake before.

Mark Mercurio MD (11:01.984)

"And I think in your child's case, here's what we're likely to anticipate." And I'll bet you have, in the way you speak, a certain measure of confidence because you've been down that road many, many times, and you know what to expect, and you know what it looks like. Of course. And then an hour later, you get asked to talk to some parents for a child who was born at 22 weeks and appears to have some mild neurologic injury, but you're not sure, maybe it's mild. The parents want to know what to expect. And you're like, "Well, you know." Or a child with hypoxic-ischemic encephalopathy, or so many other things where it's long-term, particularly when it's neuro instead of pulmonary. I think we're all a lot more comfortable talking about pulmonary than we are about neuro and long-term outcomes with that. So the confidence that we sometimes have but sometimes don't, we have to find a way to be calm and confident without being misleading, without pretending to have more knowledge or more wisdom than we actually have. I think that's where humility comes into this.

Daphna Yasova Barbeau MD (12:05.07)

I wonder then, what do you say about how we manage the art of uncertainty? There is a way for us to share with families the things we don't know, but it's hard to do.

Mark Mercurio MD (12:19.232)

It is. It is. Okay, here's another slide from the talk. Your viewers are saving so much money by just listening to this podcast instead of coming in. Again, something else from high school. This is how I have a very shallow understanding of so many of the great things in civilization. So the one Shakespeare play that we read...

Daphna Yasova Barbeau MD (12:42.348)

It sounds like you went to a great high school.

Mark Mercurio MD (12:45.144)

Mr. Dobbs was my English teacher. With Mr. Dobbs, we read Hamlet. I remember, you may have read this in high school too, right? When the old man is sending his son off into the world and he says, "This above all: to thine own self be true, and it must follow, as the night the day, thou canst not then be false to any man," something like that. But of course, what he's saying is first be honest with yourself, then it's easier to be honest with other people. Right.

So in terms of how we manage uncertainty, I think it really starts by admitting to ourselves that we don't know. And then the next step is after I'm done admitting to myself, admit to my colleagues. Then it's that much easier to have that conversation with parents. For example, at your institution, when you're trying to decide what to do with a certain group of newborns—many places have these conversations around 22 weeks, should we or shouldn't we offer resuscitation. Because a lot of things to your younger viewers that seem obvious now, I mean, 15, 20 years ago, everyone knew that survival at 22 weeks was impossible. A lot of things that everyone knows turn out not to be true. So yeah, isn't that frustrating? And so whatever that conversation was, if it's around 22 weeks or whatever it is at your place, at any place, it starts by...

Daphna Yasova Barbeau MD (13:56.97)

Screening.

Mark Mercurio MD (14:10.83)

All right, what are we going to do with these kids? Well, let's talk about the data. Let's be honest about what we know and what we don't know and what we're able to predict and what we're not able to predict. So of course, we talk so much about, "Here's a kid who's 22 weeks and three days." And that's how it gets presented to us as we're going over to talk to them. "Well, 22 weeks and three days." And what I always tell the fellows is, when someone tells you that, you got to say, "Based on what?" And if they say, "This was an in vitro fertilization case," you say, "Well, okay." If they say, "Well, this is an unregistered patient who we just met an hour ago, so it's based on an ultrasound we just did an hour ago," well, now you've got error bars of at least two weeks in either direction. So now your patient is either 20 weeks or 24 weeks. So your chance of survival is somewhere between 0 and 80 or 90%, right?

So those error bars are something we don't think about a lot. So we need to be honest with that uncertainty really with each other to start with. Just as we're sitting around, what do we know? And the reason why I bring this up about 22 weeks and three days, when people say 22 weeks and three days based on an ultrasound from this morning, to me that's like saying, "What time is it?" They say, "Well, it's 11:17 a.m." I say, "Based on what?" They say, "Well, based on the position of the sun in the sky." I say, "Well, then don't tell me it's 11:17. Tell me it's about midday. Give or take a little bit." It's 11-ish, it's noon-ish. We kind of pretend to have accuracy. And of course, it's not just the MFM guys. It's us as well. We pretend to have accuracy.

Daphna Yasova Barbeau MD (15:47.246)

Right, why 22 and 0 but not 21 and 6. Yeah, for sure.

Ben Courchia MD (15:53.89)

You were mentioning a little bit before we came on air about this new center that is opening under your leadership at Boston Children's. You want to tell us a little bit more about that?

Mark Mercurio MD (16:01.422)

Sure, I'd be happy to. Yeah, this was as I stepped away from clinical neonatology just a couple years ago and was still doing medical ethics at Yale, an extraordinary opportunity presented itself and so I leapt at it and was fortunate enough to get the position. So I am the executive director of the Center for Pediatric Bioethics at Boston Children's Hospital, which is a brand new center. It started basically upon my arrival just in October of '25.

So this new center is—there are other wonderful centers in the country and we hope to match them. I won't mention it by name, no sense giving them advertising. You guys know who they are and they're run by friends of mine. But we are going to do things related to... we're going to have a pediatric bioethics fellowship that will possibly start this July, but if not, then July of '27. We're going to augment the resident education of bioethics. We're going to have an online certificate program that's going to be advertised within the month starting next fall. We're going to work in partnership with the Harvard Medical School Center for Bioethics. The center at the Children's Hospital is brand new, but the center at the medical school, which of course is bioethics writ large, is not just pediatric bioethics. The center at the medical school is very highly regarded. Becca Brendel and that whole group, they just do wonderful stuff.

So when they approached me and said, "Let's do a course together," I leapt at the opportunity. And then they said, "Well, and Bob Truog"—who you guys have likely heard of; Bob is just an absolutely marvelous pediatric bioethicist and intensivist. And Bob is semi-retired. He agreed to stay on a little bit while I started this, so he's working with me. So I'm really fortunate in that regard. Bob and I are going to co-direct this course that's soon to be advertised. It's going to start in the fall, an online course in pediatric bioethics.

Ben Courchia MD (17:59.182)

I'm really hopeful that we can have you on the podcast sometime this year and we can talk more about where people can find the course and talk about the details of all that. Obviously, we're limited today by the nature of this episode type, but a conversation to be continued, Dr. Mercurio. Thank you so much for dropping by.

Mark Mercurio MD (18:13.486)

Thank you very much for the invitation. Our pleasure. Alright, have a great day.