We are releasing today a special episode dealing with the recent decision by the US Supreme Court to overturn Roe vs Wade, eliminating the constitutional right to abortion in the United States. Specifically, we wanted to focus on what are the implications of this colossal decision on neonatologists and the practice of neonatology. To that end, we are very fortunate to welcome to the show Dr. Jonathan Fanaroff who has the perfect background to lead this discussion. Dr. Fanaroff is a neonatologist, an ethicist, and has a law degree; he is most likely the best person to help us understand the ramifications of the SCOTUS decision on the field of neonatology.
In case you wish to learn more about the supreme court's decision to overturn Roe vs. Wade you can read more about it here:
Bio: Dr. Fanaroff is a Professor of Pediatrics at Case Western Reserve University (CWRU) School of Medicine in Cleveland. He is a neonatologist as well as Director of the Rainbow Center for Pediatric Ethics at Rainbow Babies & Children’s Hospital. Dr. Fanaroff earned his law degree from the University of Virginia School of Law and his medical degree from the CWRU School of Medicine, where he was elected to the AOA Medical Honor Society. During his second year of neonatology training at Rainbow, he commuted to Chicago and completed an ethics fellowship at the University of Chicago. Dr. Fanaroff’s research interests center on ethical and legal issues in neonatology and pediatrics. He is the immediate past Chair of the American Academy of Pediatrics Committee on Medical Liability and Risk Management. He lives in Cleveland with his wife Kristy, a neonatal nurse practitioner, and children Mason, Cole, and Brooke.
Dr. Fanaroff can reached at: Jonathan.Fanaroff@UHhospitals.org
Dr. Fanaroff mentioned several papers during our conversation and you can read those here 👇
The transcript of today's episode can be found below 👇
Welcome Hello, everybody. Welcome back to the podcast off now. How are you?
Oh, I'm doing great. I love I love extra episodes.
Yes. So today is an extra episode of the podcast. We have two guests with us. We have Dr. Rooney Tom's who the audience is becoming familiar with now, at this point, Ronnie, how are you?
I'm doing great, guys. Thank you for including me on this.
Oh, of course. And we have the pleasure of having with us today we have the pleasure of having on with us Dr. fanaroff, who is a Professor of Pediatrics at Case Western Reserve University School of Medicine in Cleveland, Ohio. He is a neonatologist as well as director of the rainbow Center for Pediatric ethics at Rainbow babies and Children's Hospital. Dr. fanaroff also earned a law degree from the University of Virginia School of Law and his medical degree from the Case Western Reserve University School of Medicine where he was elected to the AOA medical Honor Society and that's one of the big reasons obviously why we were trying to have him on is because of his dual expertise in both neonatology and law. During his second year of neonatology training at Rainbow he committed to Chicago and completed an ethics fellowship at the University of Chicago, Dr. Fenner offs research interests center on ethical and legal issues in neonatology and pediatrics. He is the immediate past chair of the American Academy of Pediatrics committee on medical liability and risk management. He lives in Cleveland and Cleveland, with his wife, Christy and neonatal nurse practitioner, and children Mason, Cole and Brooke, Dr. Jonathan fanaroff, who is joining us on this special episode to discuss with us the practical ramifications of the recent decision by the Supreme Court of the United States regarding Roe versus Wade, and the right to abortion in the United States, on the practicing neonatologist. Dr. fanaroff. Thank you so much for being on with us. Thank you for having me. Daphna you lead the way.
Yeah, well, and admittedly, I actually think this was Rooney's idea. So I'll take credit for it. But I think Rooney's idea to say we'd been talking about and they said, Don't you think this would be a good episode for the podcast that people need to know? Because I am, I'm American born. And I think there's still a lot of us, admittedly, who are maybe not so familiar with the legalese and the legal system who are struggling with understanding how this is going to affect us. And so I think maybe that's where we'll start. Dr. fanaroff, if you can maybe just help us understand if and if we're having trouble knowing what this means kind of on face value with the overturning of the decision.
Jonathan Fanaroff 3:28
Sure. So the end just to start out, I think it's important to recognize that no one knows, you know, exactly what all the ramifications of, you know, the decision by the Supreme Court was, you know, June 24. It is July 6. And so there, there are still a lot of questions and things that are going to be sorted out over time. But the bottom line is that, since the 1970s, there has been a constitutional right for a free viability, abortion in the United States, based on the Supreme Court ruling Roe v. Wade. And that had the Supreme Court has had many abortion cases since then, including Planned Parenthood V. Casey and others that have modified that constitutional right but it has existed until June 24. When the Supreme Court ruled in the case of dabs V. Jackson, Women's Health Organization, that Roe v Wade and Planned Parenthood V. Casey no longer applied and eliminated a woman's constitutional right to an abortion and they In their ruling, the Supreme Court determined that the authority to regulate abortion resides now with the individual states. And so what that means is that each state in the United States now has the ability to implement laws applying to abortion within its borders. And that includes any limits for bands, including in the pre viability period.
Can I ask a clarifying question? So obviously, we had this federal legislation, but the States still had some power over how, how things regarding abortions were managed at the state level. Yes, right. And now, so that's it's still a state level. But there was some difference, even in states even when the legislation was not overturned.
Jonathan Fanaroff 5:58
Correct. And so, you know, this is probably a good time to go back to seventh grade. And our social studies classes when we learn, you know, about the structure of the United States government. And, you know, the United States government starts first and foremost with the Constitution. The Constitution was drafted over a six week period in 1787. And, you know, it's the highest law, it's sets out, it creates our government, and it sets out how it works. And it basically, the goal, if you go back in time was to have separate, you know, sort of disperse power in a way. And so you had three separate but equal branches, with the executive branch being led by the President, the, and the judicial branch, with the Supreme Court, sort of at the top of that, and the legislative branch with Congress, the House of Representatives and the Senate, each with different roles. So the Congress, the role of Congress is to in the legislative branch is to write laws, the role of the executive branch with the president is to basically carry out those laws. And the goal of the judicial branch is to sort of mediate between the other branches to interpret the law and review the way that laws are applied. The states have a very similar setup, they have three branches, they have a governor, and step up instead of a president. And the way the US government is set up is that the federal government has a say in certain areas, and the states have say in sort of everything else. And so to answer your your question more directly, as long as the states comply with the federal law, then that is okay. And so, going back to with Roe v. Wade, there was a constitutional right to a pre viability, abortion, but different states wouldn't put in laws to that some being much more restrictive than others. But absolutely. Among the 50 states, there was a huge variety of laws and interpretations and restrictions, depending on which state you're in.
And so that's a very interesting point. I want to I want to mention this for our audience who's for for listeners, who are who may be abroad were in the United States, the right to an abortion was instituted by the Supreme Court, because they interpreted the Constitution as including this right, in the original Constitution. It's not something that, for example, where I come from in France, the French Assembly voted on this and made it into law. In the US this this never really went to the Senate to Congress. This was something where the Supreme Court justices decided yes, this is in line with the Constitution after a case was raised, in this case, Roe v. Wade. Right. And and this is how this became into law, which is I think, is an important difference in how the right becomes in effect in the country, depending on where you live around the globe. This is not something that's very common.
Jonathan Fanaroff 9:38
It is a you know, the United States is set up and was set up historically right, they wanted to it was you know, a direct response to the British government right where, you know, there was a king or queen and you know, in fact, we just have a celebration right Queen Elizabeth came into power based on on her, you know, family status, and she became queen in 1952, at age 25. And she's still the Queen today, in 2022. So the setup the founders of the United States government, were setting it up as in sort of a direct response to their experiences there.
And so to conclude this, this, opening these opening remarks, I think it's important to mention exactly what is the current state of affairs right now, in the US, as you mentioned, the Supreme Court has relegated to desta decision about the right to abortion to the states. And what's interesting in the United States is there were, for example, certain states that had what these are called the trigger laws, basically, the states had anticipated the day this decision would become would take effect, and have these automatic laws that take effect where abortion becomes illegal right away. And there's a total of 13 states, and I'm not gonna list them, but there's 13 states that have this. And then there's a bunch of other states who are going to have very liberal abortion laws. And so there's, it's creating a huge differences, huge differences in the landscape of the United States, depending on where you live. So we are in Florida, our situation is different from somebody living in New York, and it's definitely different from somebody living in, say, North Dakota.
Jonathan Fanaroff 11:27
Absolutely, and this is, this is a great time to, you know, to remind everyone that this podcast, this is really an academic discussion, do not this is not legal advice for anyone, I am not a practicing attorney. And it's very important in this situation, because the the consequences are real, that you have appropriate relationships with attorneys in your state. Because the law, you know, and as as neonatologist, we are remember, we are regulated by federal law, we have a DEA license, we are regulated by the state, we have a medical license from the state. And things are changing very rapidly in some states and others, not as much. But in my State of Ohio, there was a trigger law, in effect, and that, you know, within two days of the the court decision, that law came in, you know, came into effect and is now in effect in the state of Ohio and the legislature in the state of Ohio is moving to pass other laws. And so you do need to, you know, be aware that, and it definitely legal, you know, rules, right. And we are governed by the law in this in this country. It can come from a court decision, like the Supreme Court, it can come from, you know, the legislature, it can come from the State Medical Board, there's a lot of different sources, and no, the technologist is going to have time or the skills to keep up with that. So it's, it's just as important for those reasons to be aware and have good legal advice.
Okay, so then,
what I mean, I think we're gonna get into the, you know, the details of what this means for us, but maybe now's a good time to since you brought up that point about having a good working relationship. Like, what are the recommendations for those of us where, you know, legalese, we just kind of glass over, like, what are some of the, you know, basic terminology or, you know, relationship skills, we need to just inter engage with our, you know, legal systems and our hospitals, for example?
Jonathan Fanaroff 13:44
Sure, and I recognize that there's, you know, 5000 neonatologist in this country practicing in a variety of different environments. I think there's 3000 NICU. So, you know, some, you know, I'm fortunate enough, I practice in a large academic medical center with a large legal department, you know, we have, so in our institution, and we I practice in a, you know, sort of level four NICU environment with a number of community hospitals that have more level one Nick used in we're all part of a health system and we had a, We've convened a task force, and that's got legal, it's got high level administration, it's got our obstetrician and MFM. Colleagues, it's got, you know, it's got neonatology, so and everyone is just trying to work on staying up to date on changes and making sure those get communicated to the practicing Obstetricians and Gynecologists as well as nurses and all you know, everyone else, it takes a team to care for these patients.
And so I guess the before we enter now the discussion about the practical implications for the practicing neonatologist. I want to preface everything we're going To discuss by saying that this is not a discussion as to which side of the argument we should be on. It's not an in depth review of the decision or of the laws at every state level. But it's going to be mostly to inform neonatologist about what they should be aware of what are the what are the areas of your practice that this law will impact? And maybe how to think about certain things when it comes to addressing what didn't use to be problematic now that they might become a bit more controversial. So with that being said, I was wondering, maybe Rooney, do you want to? Do you want to take the ask as Dr. fanaroff? Your your first question?
Yeah, that's great. Yeah. So Dr. fanaroff, you know, as a practical practicing Nina technologist, so I just want to try and clean it up a little bit for ourselves. And I love your little history lesson, where the where it kind of everything is embedded in the constitution for people understand. And this is, you know, this is the philosophy of life, liberty, and pursuit of happiness where every every individual born in the US has rights, they have legal rights, of course. And based on those rights, we kind of have to manage our patients respectfully, and respect their rights. So under this new law, the way I see we could be in a situation where we can have to manage babies who are kind of in a what we often call a pair of viable period. Right? So as we're balancing ethics and law, how do we a little bit of the history of this, how does that kind of fall together when it comes to? What should we base our decisions on now? Is it just the purely the law and the individual of rights? And where do ethical decisions kind of fall in? And how do they tie together?
Jonathan Fanaroff 16:55
Right? Yeah, a great question. And, and cannot be emphasized enough. This is obviously a very emotional and it always has been, to be honest, it's not. And so whatever your personal beliefs are, whatever, however you feel about, you know, about these decisions as a practicing the ontology, I've always, as someone who's very interested in ethics and law, neonatology, I honestly, I hate the abortion aspects of this, I, you know, to me, I'm here for I'm here for the baby and for the family, when they come and so, you know, the ethics and law are different. You know, it's, I should point out that just because something's ethical, doesn't mean it's legal. And just because something's legal, doesn't mean it's ethical. You know, I always give the example of, you know, when my wife went into labor at 1am, I ran red lights and went well above the 35 mile an hour speed limit, I broke the law. But I did it for moral and ethical reasons. And the same is also true, just because I'm looking at, you know, the historically, if you ever go to Rome, ancient Rome, you know, which was one of the first cities actually had the laws of the city, in the middle of the city, and there was tablets, and on there, it said, and obviously now formed child should be put to death immediately. That was the law. So I'd argue that's not, that's not an ethical law. So you know, I don't know that this decision changes, our approach in the delivery room should be always to do what with what is best for that baby, no matter why they're there. First of all, it is you know, even if the if a mom and it's always been true for you know, if a mom comes in, and she was having a termination and the baby is delivered, and is viable, you know, if it turns out that the baby's, you know, then our, if we're called the delivery, we have to do what we think is in the best interest of that baby, regardless of why they're there. And so I think, you know, nothing for me from this law, in terms of what I'm doing in the delivery room, it's always should be caught talking with the family, and, you know, trying to figure out what the best care approaches for that baby. And in the, in the case of a baby who is, you know, 20 weeks or too small, you know, going with a care, you know, towards comfort care, as a you know, always providing care, and for a baby where a family wants us to try going ahead and, and trying and I've said that for years, when I give talks if a family asked me I've gone to a delivery of a 19 week, pregnancy before when a family is asked and I've gone and have a value of the baby and said I'm sorry, there's you know, we're our care for this baby's going to be comfortable but the family was happy I was there. You know, that's that's actually don't matter who was my mentor and neonatology and ethics you know, always said that The term attending means to be present. And and
I know that's so powerful because I think the conversation, especially on our side, and it's still being written, I mean, for everybody, it's still being written. Right. But our side has not been taken, you know, the neonatologist, the pediatric side has not been taken much into account of what does this actually look like most of the legislation is very specific towards obstetric providers. And, you know, saying, Yeah, of course, we can care for babies that are that are born early, but that may look different than a full resuscitation for a baby that's of these very, very low gestational ages. So I think that's a great point that we have, we have things to offer, right?
So I guess my question, then, based on what you said, Dr. fanaroff, is, you'll have to choose let's let's let's push the knob on to the extremes on both ends. So you'll have for example, a state that has a very liberal abortion practice and maybe a baby that is delivered at an age where they could potentially be considered viable, and then you find yourself in this position, do you have an obligation to resuscitate versus not, and then a state where the abortion laws are very restrictive? And then you find yourself in front of a baby that is not viable, like a 15? Week infant? And then does that mean that comfort care now becomes, quote unquote, wrong? Right? Do you have to maybe you may not have ET Tube small enough? So should you just slap on a cannula because you have to provide the most intensive care you can because this baby has quote unquote, rights and so so that has to be done? Is does that? Or is that? Or is that wrong on both counts? Were no your practice of neonatology should not change at all.
Jonathan Fanaroff 21:55
I mean, we are we're still at this point in time, you know, you're supposed to practice, you know, this guessing maybe the legal side, or, you know, you, you need to practice as you know, it was a reasonable needed to us I don't think putting a cannula on a 15 week, baby is a you know, once again, that to me, and there was you know, a few years ago, there was, you know, the, there was a federal law called the born alive infants Protection Act. That, you know, if you read it, and it's, it's not that long, it says, it says a baby that's got a heartbeat, or is crying and moving is alive. Right. And I agree with that. I don't think that's super controversial. And a baby that's, you know, that's born at 15 weeks still has, you know, there should be dignity, and there should be humanity and compassion, and, you know, and caring for that baby. So, you know, but at 15 weeks, there's nothing, you're not going to be able to intubate that you're not gonna be able to give and it's not, you know, so the care you're providing is going to be it's going to be comfort directed. But But, yes, it is, you know, I do think and once again, Roe v. Wade said, you know, abortion, there was no constitutional right, when the baby was viable. So that's been for somebody and and viability has forced change, right. You know, John F. Kennedy, as President had a two kilo 34 week baby that died of rds, and 1964. And if you actually look over the years, you know, NRP is it's a fascinating historically, right and RP 20 years ago used to say, You do not need to resuscitate a baby with trisomy 13 or 18. You don't have to resuscitate if they're less than 23 weeks, then they've moved out. Right, they want to know, so we've always had, you know, how small is too small questions in, in in neonatal ethics and things like that. So but at this point in time, I don't have anything to offer for 15 weeks other than
and the limit of I know, Rooney has a question. But so the limit of viability in the US still remains 23 weeks, correct?
Jonathan Fanaroff 24:05
No, I would disagree with that. I think I think anyone who's seen the, you know, what's coming out of Iowa? You know, it's a loaded question, in a way. Right. And and I think the, you know, going back to, you know, John Tyson's, you know, excellent outcomes estimator, is that recognition that it's not just gestational age, right, it's weight. It's, you know, it's not your age, it's just other factors. So you want to take factors in and you want to include parents, and as I said, if you look at the evolution of, of NRP, and we've just gone into eighth edition, and now they really say, Look, you should have this conversation with families. And if the family is not available, then you should try. And that going back to another, you know, sort of dull meadow, John Lantos, kind of, you know, trying and failing for many families is better than than not trying at all.
Maybe, maybe, maybe I'll take I'll take this off here. But isn't isn't there? Wasn't there a cut off where parents were allowed to decline resuscitation? Right? I mean, if the right from from what I read I mean, again, I'm, I'm going off memory here. And correct me if I'm wrong, isn't there? Isn't there a rule somewhere that said, if the baby is 24 Plus, the parents cannot really refuse resuscitation, but if the baby is 23 and below, or 22 and below independency, I want comfort care. Even if the baby is alive, crying, kicking you, you should respect the parents wishes. Am I wrong in that?
Jonathan Fanaroff 25:34
You're sort of wrong. I mean, if I it's not, it's not uncommon to be so if you look back once again, we got a little bit hung up on just industry and gestational age. And in fact, no, it's okay. It's a very common it's, it's a good but you know, if you want to get looking at rp and rp, actually quotes the AMA, the American Medical Association Code of medical ethics that has also been around a long time. And the American Medical Association Code of medical ethics opinion 2.215 says that the primary consideration for decisions regarding life sustaining treatment for seriously for seriously ill newborns to be what is best for the newborn? And they say no, I always give the example. And I'm teaching about, you know, Jehovah's Witness families, right, where they, they refuse a blood transfusion, Mom's having significant bleeding, she says, I would rather die than receive a blood transfusion based on my religious beliefs. That since the 1960s, she has that right. That is both ethical and legal for a competent adult to refuse a life sustaining treatment based on their legislation. Now, she says, and I don't want you to transfuse my baby, I'd rather my baby die. And the answer to that is no, ethically and legally, we will transfuse that baby because we are in need to do what's best. So now understanding that that mother is doing what she thinks is best for that newborn. She's thinking beyond the medical, she's thinking about religious implications. And so the AMA goes on to list five factors that you need to consider including the chance that the therapy will succeed. The risks involved with treatment and non treatment, the degree to which the therapy of successful will extend life, the pain and discomfort associated with the therapy and the anticipated quality of life for the newborn with him without truly understanding also, the quality of life is a very difficult thing. And that most people look at neonatologist and think we have a horrible quality of life. Right? I worked July 4 weekend. So there are all these different factors. So getting back to your point, the parent who says and Mark materia who's a well known ethicist, Neonatologist at Yale, he he, along with colleagues published writing because the most difficult ethical question where a family with 23 week twins was provided information based on the calculator, the outcomes estimator, and said, Okay, resuscitate the girl and don't associate the boy
because because the outcome estimated based on
Jonathan Fanaroff 28:14
the data set that said the 23 week female had much better outcome than the male. So they were doing it based on all the things that we you know, we gave them the tools we gave them the tools we use, right? If you had a baby, if you had this situation in room nine, labor on nine and labor on 10. You might think, Okay, this is okay. But they did not think that they end up saying, Look, we just said we can't do that. You know,
I'm gonna I'm gonna hunt down this paper. I'm looking at it right now. But even though I was wrong, I'm going to leave this this.
Jonathan Fanaroff 28:48
Let me just finish. So the bottom line is when the family says it and the reality is I don't hear this very often, and you don't encounter it very often. But the reality is, the family comes in and they're having a 28 week baby, and they say, and you say, look, there's increased risks of problems long term, they go listen, I comfort care for my 28 week. You say we were not doing that. So there are, you know, there is a gray zone, there are things I cannot resuscitate a 15 week or aggressively I don't have those tools. And I'm not going to allow a you know that there is always a little bit of gray zone where you talk with the families and try and figure out what is best for the newborn and there always will be a gray zone in neonatology.
So they're different. It was great that you brought up the born alive there from Protection Act, and I had the privilege of working in Alabama for many, many years. And when that came out in 2002, I believe it was something like that impacted us quite a lot. So we actually spent a lot of time going to preventable babies, if you will, in the delivery room and at I believe the counseling there really mattered a whole lot. But as correct me if I'm wrong again, but I do believe that the resuscitation guidelines changed. And RP did change a little bit because the US Department of Health and Human Services came out kind of with a statement saying that if we didn't handle the preventable infant correctly, or if we were reported withholding any kind of medical care, it could be a potential violation of federal law of federal statute. So what what do we need to do correctly in the delivery room? What do we need to document? What do we need to as part of assessment? Do we need some new kind of screening program for viability? What are your thoughts around that in this situation?
Jonathan Fanaroff 30:51
Sure. And, you know, as I said, if you remember NRP, you know, the NRP committee came out with a statement about the bornyl. And as I said, I read the born alive infants protection I can you can't do it's, it's really, all it says is a baby who's born with a pulsating cord, or a heartbeat, or moving or breathing is a lot. And as I said, I agree with that. I still want to do what's best for or it doesn't mean that some people interpreted it. Some people said, this means you have to resuscitate every baby no matter what, no matter what size or gestation. And I don't see that I never saw that interpretation. You know, I think our job is intelligence is to provide humane, compassionate care, recognizing that we can't always fix things, and you know, and so, you know, but at the same time, there is, you know, there is a law called EMTALA, you know, the emergency medical treatment and active Labor Act that does say any, and that has been extended to the labor and delivery. Yeah, it does say any, you know, any baby who, you know, who is born alive, does have, you know, does require a screening exam. And so getting back to your documentation, you know, I think, you know, saying, so that's where I do say someone calls and says, are delivering, and you say, I'm not showing up. That's, that's not a great idea. But just to, but to come and document and say, I was there baby is, you know, too small for, for resuscitation. And, and, you know, clearly, very, very low gestation. care provided was warmth, and, and humidity and skin to skin, you know, you're always providing care, as I said, if you get it gets back to that,
yeah, I think that's a good point, too, to create kind of a, a new platform for that form of care. And always focusing on the best interests concept.
Jonathan Fanaroff 32:54
Correct. And, and understanding that, once again, this is, you know, for the families, it's just, it's a horrible time, and you're, you know, you're doing your best to, yeah, reasons do matter. And it's the same thing, you know, when you talk about, you know, when you get morphine to, to a dying baby, you know, euthanasia is illegal. So if you give a big slug of morphine, to promote death, that is euthanasia, that is illegal. If you give a standard dose of morphine to make the baby comfortable. That's okay. So I do think documentation, documentation is important of what you did and why you did it. Absolutely.
I think we've, we've skirted this, this topic a little bit so far, and you've written extensively about the prenatal console. And so to follow up on kind of Rooney's question, you know, how did this, how do you think this changes our prenatal konsult? You know, in my experience, as, as the laws change, society, who may not be privy to all the information that we have, seems to think that, you know, medical care has changed. And that's not always the case. So how, you know, does this change the way you approach the prenatal console?
Jonathan Fanaroff 34:17
That's a great question. I'm glad you brought it up. Because I do think this is an area where neonatologists are going to need to be very aware of what the laws are. And so a lot of this is going to, as I said, the legislatures are in many states, not all states are scrambling to change laws, especially surrounding notches, and many of the termination laws are not necessarily directed against the woman seeking termination but against the providers, you know, often the doctors and in Texas, the laws is sort of anyone who's promoting that So they're sort of the, the, as they quoted, and I don't I'm not aware of any of these lawsuits yet. But, you know, the person driving you across the state, the person advising you. And so it's it's, I don't know if that's yet whether those laws are going to hold up or not or what's going to happen. But for the neonatologist, if you are in a state where those laws are being considered, then the advice that you're giving may may end up being potentially restricted. Now, there's also, of course, the constitutional right to free speech. There's other you know, there's just a lot of different factors here that that play. But I do think that potentially, in a state where termination is not an option, it may be difficult to provide that advice, if that's something that was was being done. So I don't, you know, it's very early, but that is something that may potentially affect neonatology.
Yeah, and I can envision, even even say, our resuscitation patterns don't change, though I anticipate that they will. But you know, how, how does that I think what we will find is that we will be asked to do more many more consults, and that we will be at many more of these pre viable deliveries. And so any, you know, again, this is something you've written on extensively, even before this discussion, any recommendations for people who maybe that's not their favorite part of the job, and they still they maybe struggle with that counseling to begin with? And now there are all these additional factors kind of at play?
Jonathan Fanaroff 36:58
Yeah, I mean, I think, you know, there is a growing racket. Yeah, when I was in training is sort of the, it was sort of felt like you either had or you did, right, you were either good communicator and good at doing consults. And if you're gonna, or you just were terrible, and, you know, there's now recognition that communication is a skill. You know, there's lots our fellows now do simulation, with difficult conversations, you know, there are ways to try and improve that I think that these are, these are conversations, you know, that, that we can, you know, we can always get better at, and recognize it, and I should say, also, and, you know, going back to the potential laws, the, you know, restricts what you can advise and things like that, that there is also a role for neonatologist and for everyone for advocacy. Right. So, you know, the, in terms of, you know, the American Academy of Pediatrics is big on advocacy and the American Medical Association and things like that. So there are different, there's your role as the bedside neonatologist and then your role as a, an advocate for families and for and for babies and for everything like that, but that it's a little bit separate. But there is you know, I think here is you can't have too many disclaimers about you know, the, one of the first things you learn in, in law school is, you know, ignorance in the law is no excuse, you are expected to be aware of what the law is in your state. And as I said, it is changing rapidly.
And there are some cases like fanaroff, from the past where, say, parents of the I believe it was a 23 week or 22 week er who actually sued the institution, because they felt as though they had they known the potential aspects of neurological or neurodevelopmental problems that their child would have had or had ultimately ended up having they would not have agreed on a resuscitation is that kind of situation. Now we're kind of taking out of the equation because of the born alive infant Protection Act and the new this new situation,
Jonathan Fanaroff 39:12
potentially. So that's, yeah, those are those are some some pretty hard to reconcile cases, because in a way that the families are suing saying I wish my baby was never born. They're really hard. Hard to stomach. They're a couple of yeah, they tend to be genetic, certain genetic conditions. That were not that were not diagnosed. And a couple I think, with failed, vasectomy or things like that. But in general, yeah. I mean, the argument, certainly if you're in a state, and they say, Well, I wish I'd, you know, if I'd known I would not have carried this pregnancy through. It's hard to see how you can make that argument if you would not be allowed to change the outcome. So Oh, That may change. Those are once again, those are relatively rare cases. And I do think, you know, I always, you know, one of the most important cases that in fact, I just wrote something in pediatric research, I am Baby Doe, which is one of the most important ethics, neonatal ethics cases and ethics cases. And for those from who haven't heard of it, this was in, you know, 40 years ago. So where a baby was born in Indiana, April 9 1982. And he had Trisomy 21, and esophageal atresia. And his family refused to consent for surgery, and he died from starvation at six days of age, it became sort of a national because the hospital disagreed with that decision, they went to court, and the court agreed with the family and said, while your your obstetrician said, this child is never going to have a good quality of life, right, it has nothing to do with esophageal atresia, that everything to do with the Trisomy 21, and so on that baby died, and that's where the baby doll regulations came. That's where, you know, and I, right, you know, if baby that was born in 2022, of course, we're doing that surgery, right, it goes back to again, the family can't make your, you want to do what's best for the baby. And we know, you know, I find children's Trisomy 2121, to be some of the happiest children right now. So ethics do change.
And I think if you are I mean, I would be remiss if I didn't recommend a book on the podcast. But if you are interested in this time of neonatology, the book by Jeff lion, called playing God in the nursery is a tremendous book going over some of this of this particular time period. And it's an it's quite an eye opening. So can I have something where you, you were gonna say something,
and you go ahead.
Again, as as of as I'm thinking about the foreigners in this country, like myself. And going back to what Daphna was asking about the prenatal consult. We've learned the vernacular, as we were being trained. And I'm wondering if following up on deafness, question about how we conduct our prenatal consult, do you think that we have to be more cautious with certain terms that we use that like the how we throw around the word viable, preventable? Or do you think no, do you think that that we should continue to conduct our consults, as we've done until now, and that this new Reg, this new decision by the Supreme Court shouldn't really affect the verbiage that we use during a consultation. So I don't
Jonathan Fanaroff 42:38
think that recent changes should change how we approach these, but I do think that hopefully, we have changed our language over time. And there's a nice paper called lethal language, lethal decisions, and we have to recognize, first of all, the internet exists. So you know, years ago, if someone was diagnosed with prenatally with trisomy 18, for example, then the physicians would say, these babies all die in two days, and, you know, nothing else can be done. And this is horrible. Nowadays, the first thing a family is going to do, they're not going to wait to get home, and they are they're gonna get on their phone. And they're, and one of the first things you're gonna see is an organization called soft supportive families with trisomy, and, and, and they're gonna see 11 year old with trisomy 18. So our language, you know, around, there is no line of viability that I know, in terms of, you know, so you know, as I said, different than every, and no one has the crystal ball. We, all of us, in the in ontology who've been practicing for any length of time had babies, we said, There's no way this baby's gonna make it, and, and then they come back in your unit years later and look great. And then there's others who we think are gonna be just fine, and they're not. So no one has that kind of level predicted. And so we always we do need to be honest with families about that's not to say we shouldn't be honest and open. And even, you know, even Iowa, you know, it was published, you know, the best results in the, I think 22 weekers that I've seen outside of Japan, you know, they still have more than half of those babies don't ultimately know that it's still so I think being honest with families in using appropriate language, we want to be very, you know, honest with families when we think things aren't going well or we think this is going to be difficult, but but as I said, no one has and that's human nature, by the way, too. Right? And it's not you know, if you go to a cancer board, and they say you've got a 99% chance of death and 1% chances rival everyone is gonna say I'm in that 1% Right. And that's the length of war language used in cancer, fight cancer beat cancer, you know, right. And that sort of is for event you know, this is we do the NICU every day, but for families is not and so when you're doing the antenatal concert I think you should be honest with them. And different families are different. Some families, they're going to rely on their faith, they don't really want to know what you have to say, and others are going to be. You know, I've noticed families where the parents are engineers, for example. They want every piece of data they can.
Yeah, I think that's a great question. Ben Noona, you know, kind of terms that we frequently use, like futility of care and Perry Bible, that kind of stuff. So I think it's yeah, we will increase our awareness around the use of that. And what do you think about the use of C percentages? So often, we use, you know, percent of chance of survival, that kind of says a 20% chance of survival, maybe a percent of moderate to severe disability, for example, how, you know, it's often I feel uncomfortable using such final numbers, what do you think of that?
Jonathan Fanaroff 45:57
Same thing, I think it depends on the on the families, I usually will get them access to the, you know, I do use the outcomes estimator. And often I will print that out and give it and once again, a lot of them are finding it on their own. You know, it's on the internet for free. And it's, you know, and I don't I don't overly focus on on those numbers, because, yeah, there's lots of things that are in the calculator. And there's lots of, you know, you know, and so I don't overly focus on numbers, but the families want numbers I'll give them you know, and that's always been also like the, you know, the orphans estimator is, generally I think, I think bond Vermont offered expert network is now in a before, it used to be, you know, 15 tertiary care centers, and not necessarily reflective of your institution at the same time, you know, if you only have to 23, because a year and they both die, you say we have 0%, you know, so whether you use local data, versus there's always that debate, too. So I think, I think giving families access to the data that we want, but some will put helping them interpret it to and, and, you know, end up taking away hope, obviously, is a big part of any national consultation being realistic, but but never taking away hope that's part of our, our job as healthcare professionals,
I have one question just for, you know, our community, I can anticipate that there are people who, myself included, who are having some moral distress about what our role will be, and what do you think, you know, as as groups as maybe leaders and training programs, or leaders in our hospitals? What should we be doing to support our staff? When these kinds of, you know we deal with ethical situations all the time, right, we have a baseline of of moral distress already in our in our units, and this seems like it might amplify some of those feelings,
Jonathan Fanaroff 48:03
right? I mean, I think for us, you know, our job doesn't, it really doesn't change. Based on this, on this ruling, our job is always to advocate for families and the babies when they're born. And, you know, recognizing that we can't save every baby, of course, and and so, you know, I don't I think the obstetricians have a whole range of concerns and issues that they need to deal with it. That doesn't mean otologist I don't believe because once again, when the baby is born, it doesn't matter for us why they're born. It really doesn't. So and I don't think, you know, I think for us getting if if we get called to deliveries we otherwise wouldn't. Yeah, of course, it's always hard and you don't always you don't always know at the same time. That's been true. We've always had, you know, the moms role in who there's no prenatal care, and we don't know what we're gonna get. And sometimes the babies come out on are clearly too small. And sometimes they're thankfully larger, you know, we've dealt with those situations. And, you know, going back to NRP, and I do think NRP, over the years is done a fairly good job of, you know, laying out a framework for ethical, you know, the ethical dilemmas, dilemmas and and basically, that's what they say they if you look, if you're not sure, or the you don't know, you can't talk to the family, then go ahead and try and resuscitate. And, you know, it's, it's getting back to some of the legal cases. You talk to you one of the one of the more famous ones is Miller case in Texas, where the family sued for resuscitating their 23 week infant against their wishes. And that ultimately went to the Texas Supreme Court that that The jury had actually awarded over $16 million to the family. And that got reversed. But you know, the at the end of the day, when we're in these situations, we should try and talk to the families try and try and go along with in that gray zone go along with what they think is best for their child. And, you know, if we can't talk to them, then in general, we try. Because if that's what most people would want,
I almost see like a small area of expertise may be a senior fellowship developing in this this range of, of, you know, appropriate support in the pair Bible period, that's mostly going to happen in labor and delivery, maybe, especially specialized units for that kind of stuff. I don't know, I think it's so broad, but it's so important, because these are families in distress, who need that this type of support. And I do think neonatologists can fill that void, that that area of expertise to help them understand truly understand the situation that they're in with, with their newborn baby that they love dearly. And we want to support them through that difficult situation.
Or maybe an extension of these small baby units that are they're blossoming around the country where the people who are leading the way in the care of these 2223 weekers may become the best people to actually provide provide some counseling as to what to expect in terms of the outcomes and the management of these babies. That's that's a good point. Okay, well, this was this was tremendous. Dr. fanaroff. We really appreciate you taking the time. I feel like you've given us a lot of important guidance and a lot of good advice and a lot of information about this process. I have been trying to keep up with all the references that you cited during the interview. I have them all, I think I will post them on the web page of the episode. And is it okay with us to share your email address with our audience in case they want to reach out to you with with questions or comments about the podcast? Of course. Yeah. So then thank you. Yeah. So we'll do that as well. Thank you. Thank you so much. Daphna Rooney.