MacLean Conference - John Lantos, "Thinking About 22-Weekers"

MacLean Conference introducer for John Lantos's 22-weekers lecture

For many years, John was one of the associate directors of the center and has trained literally dozens of the fellows here, so probably many people in the audience have been greatly influenced by John. John is currently director of Children's Mercy Bioethics Center at Children's Mercy Hospital in Kansas City, and he's a professor of pediatrics at the University of Missouri, Kansas City School of Medicine. He's offered several books, including Do We Still Need Doctors?, Neonatal Ethics, and The Last Physician, Walker Percy and the Moral Life of Medicine. He served as both the president of the American Society of Law, Medicine, and Ethics and the American Society of Bioethics and Humanities. And John will be speaking about 22 Weekers.

Dr. John Lantos

a tough act to follow in the dictionary, and they have Dave Shiedermeyer's picture.

Dr. John Lantos

I'm gonna talk about 22 Weekers, but I thought in this topsy-turvy week that has been so emotional in so many ways, we ought to spend a moment thinking about Leonard Cohen, who died last night, and I have a couple of his lyrics to meditate on. may be meaningful for this week. Everybody knows the boat is leaking. Everybody knows the captain lied. Everybody's got that broken feeling like their father or their dog just died. He also had a song about hope and democracy in the United States. And he thought democracy might return. And he wrote, it's coming from the sorrow in the street, the holy places where the races meet. from the homicidal bitchin' that goes down in every kitchen to determine who will serve and who will eat, from the wells of disappointment where the women kneel to pray for the grace of God in the desert here and the desert far away. Democracy is coming to the USA, to the shores of need, past the reefs of greed, through the squalls of hate.

Dr. John Lantos

Rest in peace, Leonard.

Dr. John Lantos

Also, let me just apologize. I'm a little jet lagged. We just returned from a tour through India where we did three bioethics conferences with a team from Children's Mercy, but also Angira Patel. Angira, are you out here? Not yet. She's coming today, who trained at the McLean Center. And thinking of the talks earlier this morning, I mean, if you start thinking about health disparities, the problems we face in the US are minuscule compared to the disparities between the US and the rest of the world. So I'm a little jet lagged, so this might be a little bit incoherent, but I will try my best. Thinking about 22-weekers, most of my talk will be about this graph. Isn't it beautiful? I'm sure you can all interpret it, but let me walk those of you who are having a little trouble through it. This was a study from the NICHD Neonatal Research Network that looked at how many babies got treated in 24 of the leading children's hospitals in the United States. So across the top is 22, 23, 24, 25, 26 weeks. Each dot

Dr. John Lantos

is the value of how many babies got treated, and the lines are standard errors. So what you can see is at 24 to 26 weeks, almost all babies received what they called active treatment. There were a few outliers. At 23 weeks, every center offered treatment to some babies, and some offered treatment to every baby. that at 22 weeks, five hospitals provided active treatment to no babies. They apparently had a policy, we just don't treat 22-weekers. But seven hospitals offered active treatment to every 22-weeker, and the rest, the other 12, were somewhere in the middle.

Dr. John Lantos

Turns out that hospital policies are the strongest predictor of survival for babies under 22. five weeks in hospitals that treat more such babies, save more such babies, and hospitals that restrict treatment or policies that restrict treatment lead to avoidable deaths. The hospital with the best survival rates, the University of Iowa, reports 40 to 50 percent survival for 22-weekers and higher survival rates than most other places for their 23 and 24-weekers. Here are their stats from the University of Iowa. in between 2006 and 2014, 48% survival for 22-weekers and 88% for 24-weekers. And this is how they compare to the Vermont Oxford Network, a large consortium of

Dr. John Lantos

NICUs and the Neonatal Research Network, Iowa is clearly the outlier there at every week of gestation by about a factor of three or four at 22 weeks. How do they do it? They do it by a concerted effort that involves both obstetricians and pediatricians so that Every baby or every pregnant woman after 20 weeks gets antenatal steroids, something that the American College of Obstetrics and Gynecology does not recommend. They have a standardized protocol which you can't see here, but you can see that it's complicated, but they follow it in the first hour of life for these tiny babies. And part of it includes innovative techniques of ventilating where every baby is put, oops, every baby is put on a high-frequency jet ventilator from the moment of birth, which reduces barotrauma and leads to better neonatal

Dr. John Lantos

lung function. So my central question for the talk is this. Since most centers, many centers don't treat any of these babies, is there any other situation in which a patient has a disease that is uniformly fatal without treatment? And some centers report 40 to 50% survival rates, and other centers not only do not offer the treatment, but argue that it would be unethical to offer the treatment, and many bioethicists support them. I think probably not. It's weird.

Dr. John Lantos

So I know what you were thinking. Gestational age is a predictor of mortality and severe neurocognitive impairment. Parents don't want their tiny babies saved, and it costs too much. All of these are wrong, some more than others.

Dr. John Lantos

is a predictor of mortality, but at this gestational age range, 22 to 25 weeks, while it is associated with survival, it is not associated with neurologic impairment among survivors. That is, the 22-weekers who survive do just as well or just as badly as the 25-weekers who survive. Here's some data from a big study in England

Dr. John Lantos

published in the New England Journal of Medicine in 2000, where they looked at their babies less than or equal to 23, 24, and 25, and what you can see, these are all measures of disability, what you can see is basically no difference at the different weeks of gestational age within this narrow range at the borderline of viability. Similar data from Iowa, 22-weekers have the same rates of IVH, intraventricular hemorrhage, bronchopulmonary dysplasia, and neurocognitive impairment as 23, 24 weekers. So if the goal of treatment is to reduce the number of survivors with neurologic impairment, the only sensible policy would be to cut off treatment at 26 or 28 weeks where you really start to see the fall off. And it's a seeming paradox, since more babies survive with disability at higher birth weights than at lower ones, even if the rates of disability are higher in smaller babies. And here's a thought experiment to show that. Imagine a group where there was 90% survival and 20% of survivors had severe disability, versus a group that had 20% survival and 50% of the survivors had severe disability. 20% of 90 is 18, 50% of 20 is 10, so the overall number of impaired survivors that society would have to take care of, if you will, is much higher, almost twice as high in the higher survival rate than in the lower survival rate. But in this area, people seem oddly impervious to, that should say, data.

Dr. John Lantos

Take, for example, a recent statement by ACOG and the Society for Maternal and Fetal Medicine. They say, delivery before 23 weeks typically results in neonatal death, irrespective of newborn resuscitation, 5% to 6% survival. And among survivors, significant morbidity is universal, 98% to 100%.

Dr. John Lantos

Both claims here are just wrong. They're not fact-based. But here's where they come from, a sort of, I think, almost willful misinterpretation of the data. Here's the data from the Neonatal Research Network. Overall survival was 5%. So in that sense, the ACOG statement was quoting a a factoid that you could take from this study, but the survival rate of babies who got active treatment was 23%, and only 22% of babies got active treatment. So if every baby got treated, the overall survival rate would probably be somewhere closer to 20%.

Dr. John Lantos

Or to look at it another way, it depends which question you ask. This is from another NICHD study and here the question was how many babies survive without impairment?

Dr. John Lantos

and you could put in birth weight and gestational age, and this is online, there's a neonatal outcomes calculator, and if you put in how many 500 gram 23 week, they don't go down to 22 by the way, how many 500 gram 23 week singletons survive unimpaired, they break it down by boys whose moms didn't get steroids, boys whose moms did, girls with no steroids, girls with steroids. And there's three things to note here. Among 23-weekers, there's a four-fold difference in unimpaired survival. The girls are 18% and the boys five. Survival rates double if the moms are given steroids. And this doesn't distinguish death from disability in the survivors. So you can ask a different question, not how many 500-grammers survive unimpaired, but how many of the 23-weekers who survive are unimpaired, and from that same calculator, It's a very different statistic. So if you think the treatment is worth doing, if you can get greater than 50% good outcomes, depends whether you consider a good outcome only among survivors or to put it another way, is it worse to have tried and failed than not to have tried at all? Is it better not to offer a treatment and let a preemie die or to offer a trial of therapy and withdraw if things looks bad? Why do people do this? It seems, and I offer this tentatively, it seems that there's simply a bias against preemies. Consider these two cases, for example. A previously healthy two-month-old baby develops a fever, irritability, listlessness, and a rapidly spreading rash. A lumbar puncture shows that he has meningitis. If the baby survives, he will likely have severe neurologic impairment. or a baby born at 23 weeks, 550 grams, with APGARs of three and six, and he's intubated and given oxygen and his color and tone improve. In many hospitals, initial treatment would be considered optional for the baby in case two, but I would suggest is automatic for the baby in case one, even though the prognosis is better for the preemie than it is for the two-month-old with meningitis.

Dr. John Lantos

Or another thought experiment, babies born at 22 weeks and 500 gram gestation with APGARs at three and six, or an 84 year old without an advanced directive comes to the ER diaphoretic short of breath with chest pain and ST elevation. Here are the survival rates for that 85 year old, unadjusted survival rates, about 15% overall, and as I pointed out here are the achievable survival rates for the 22-weeker. While many people would say that CPR for that 84-year-old might not be the best thing, I'm not aware of any hospitals that have policies to say we absolutely will not offer CPR to any such patients without even discussing it with them and their family. There is something about preemies. Here was a study that Annie Janvier did in Canada with residents and nurses, gave two case vignettes. One identified the patient as a 24-week preemie and the other just described a patient and gave outcomes that were those of 24-week preemies in that institution at the time and asked people, would you resuscitate? And what they found among the nurses and the residents was if you said it's a 24-weeker, they were half as likely to resuscitate as if you simply gave them the outcomes of a 24-weeker but didn't say what the gestational age was.

Dr. John Lantos

Many people think parents would not want treatment for such babies. Surveys of parents suggest that this is also not true. Here are the sorts of data that suggest that. This was a study of physicians, nurses, parents of children who had been extremely low birth weight babies. In this study, they actually, the

Dr. John Lantos

kids who had been low birth weight babies were now teenagers and they surveyed them as well. The question was, I believe an attempt should be made to save all infants regardless of birth weight. the parents and the teens were much more likely to strongly agree than the physicians and nurses who mostly strongly disagreed with that. Or percentage of people who thought it was appropriate to try to save babies at all costs. This is healthcare workers, mothers of term babies, and parents of preemies. In fact, it seems that in all these studies, parents who've had experience in the NICU are the ones most likely to say that we should try to save babies at all costs. Or here was one where they asked doctors, nurses, and parents to rank three states, death, severe impairment, or moderate impairment, that is, which would you think is the worst outcome here with severe impairment being wheelchair-dependent with the intelligence of a one-year-old unable to speak, read, write, incontinent with no independent activities of daily living. Is severe disability worse than death? The doctors and nurses, 55% of the doctors and nurses said that it was, but the parents of preemies, it was only 25%.

Dr. John Lantos

So my modest proposal is that neonatologists and professional societies should simply stop using gestational age as a basis for policies about which babies to treat, and instead treat even the most premature babies the way we treat every other patient, that is, talk to the parents, the surrogate decision makers, examine the patient, and then make a recommendation about whether treatment is indicated. Radical suggestion, I know. There is an elephant, or actually two elephants in the room. One is abortion politics. To save 22-weekers, is it to admit that the Roe v. Wade framework was wrong? and to raise questions about the rights of fetuses at a gestational age where abortion is still legal. And the other is institutional political culture. In order to get the kind of outcomes that they get in Iowa, there needs to be cooperation between neonatologists and obstetricians. Perinatal care has to be a seamless whole. There has to be an agreement to make a commitment to both develop the kind of obstetric services and the kind of neonatal services that enable this high survival rate. And that would take a tremendous shift in the institutional cultures at most hospitals in the US today, but if we ask parents, many will want treatment, and if we're asking them and offering treatment, I think we have an obligation to put in place the kind of systems that would lead to good outcomes with treatment too. ask parents and have them request treatment for 22 weekers when the obstetricians don't give antenatal steroids to pregnant women at 21 and 22 weeks and where the NICU isn't set up to provide the kind of care that this baby's need is a cruel hoax. We can learn from places like Iowa about best practices And in Iowa, they've actually created a subunit within their NICU that they call the tiny baby unit, which is sort of a NICU on steroids. And that's how they get those outcomes. So in conclusion, survival rates are improving for 22-weekers. Non-treatment is a self-fulfilling prophecy. A policy in favor of treatment will be welcomed by most parents. And my prediction is we will see more and more centers begin to emulate Iowa and treat more 22-weekers with better outcomes, and outcomes across the country will improve. Thanks.

Dr. Norman Fost

Is that you, Norm? John, that was great. Peter Singer, Jeff McMahon, and more recently, Dominic Wilkinson, a neonatologist philosopher, whose book you called the best book in bioethics in the last 20 years. I disagree with you, I think it's the best in the last 40 years. But all three of them have at least raised questions about the moral status of even normal newborns. Arguing that moral status has something to do with an entity that has hopes, plans, dreams, values, aspirations, and this is why we don't give dogs the same moral status as other animals. human individuals. So under that view, treating preemies and even newborns differently than three-year-olds or five-year-olds or 84-year-olds would have some coherent basis. And since you so praised Wilkinson's book, but maybe not every chapter of it, I'm interested in your thoughts about that.

Brief voice 1

Just say

Dr. John Lantos

he's wrong. Say that again?

Brief voice 1

Just say he's wrong.

Dr. John Lantos

A philosophy that would treat newborns at any gestational age as non-persons would be an internally consistent philosophy, although it would lead to very different treatment patterns than I think Tom Wilkinson would endorse. That is, it would allow non-treatment presumably up to some post-birth age, at which point some magical physiological transformation would occur that somehow would confer personhood on somebody who the day before didn't have it. I actually didn't read Dom Wilkinson's book in quite that way. I mean, I think what he was talking about was more how we use predictors for babies in whom treatment has already been started. and how bad the likelihood of disability would have to be before we would withhold or withdraw treatment.

Audience member 1

John, you talked about the sort of exceptionalism of the University of Iowa. Can you speak to what the factors are that led to that culture there and how that came about?

Dr. John Lantos

That's a great question. I cannot answer it except to speculate based on a visit that it was leadership within neonatology and an institutional culture in which collaboration between neonatology and obstetrics had already existed and continued to exist. But how that came about, I don't know.

Audience clinician comparing 22-week treatment policy with spina bifida history

John, thank you. I wonder if you think there might be an analogy to spina bifida. In the 70s, we had the Lorber camp saying only treat the best of them. And you had the McClellan camp saying treat all of them and study the outcomes. And it took a long time for people to be convinced of the data, which said that treating all of them, you get the same outcomes as if you treat only the best 15%. It seems to me this moving target and trying to believe your data is part of the problem I'm wondering what you think.

Dr. John Lantos

Just to be clear about what I'm arguing here today, it is not that, here's a double negative, it's not that it's inappropriate to consider disability as a long-term outcome and severe disability as a reason to withhold or withdraw treatment. What I'm talking about here is an institutional policy not even to offer initial treatment categorically to a group of patients. So maybe to the extent that in the 60s and 70s, people tried to develop scoring systems for the severity of myelomeningocele and say, if it's above a certain level, we shouldn't offer treatment. There's an analogy, but I think even in those cases, what they would do is recommend non-treatment, but still offer it if the parents insisted That's very different than the many centers who just do not even discuss and say, we have a policy, 22 weeks. No discussion.

Audience clinician comparing 22-week treatment policy with spina bifida history

My sense was that there were places that had a categorical policy. If you didn't meet these criteria, they weren't going to treat you. And so you had people saying, we don't know that. We

Dr. John Lantos

have

Audience clinician comparing 22-week treatment policy with spina bifida history

to offer treatment and we have to study it and see whether that hypothesis is true. That was my understanding.

Dr. John Lantos

If that's true, then the analogy would be a good one.

Audience member 2

Right, so everybody loves data, and I hear you saying we're not getting data here because of these... dichotomous policies, and I think the third elephant maybe in the room is disability ethics, how healthcare professionals specifically have this, and we see it over and over again in ethics consultation, this quality of life bias. So to respond to your question about another disease that might be somewhat like this, I was thinking about childhood leukemia in the 70s. where the treatment itself, not the underlying condition, but the treatment itself, craniospinal radiation, high dose anthracycline, caused a lot of disabilities in exchange for the potential for cure. It's not a perfect fit, but at least it gets us there, and what we did in oncology was we got data.

Dr. John Lantos

Good point. Like Christie's question, I'd have to go back and look at whether there were places where if you got a diagnosis of ALL in 1970, people said, even if you want it, we're not gonna do it. Do you know whether that's the

Audience member 2

case?

Dr. John Lantos

And I think it was more discouragement of treatment and saying, you know, this is experimental and we don't think it's gonna work and there's gonna be a lot of pain and suffering, but if you want it, we'll do it.

Dr. John Lantos

And again, by my analogy, once some centers started reporting good outcomes, I'll bet there weren't many centers that said, no, that's unethical, we're gonna continue not to offer that.

Dr. John Lantos

Martha.

Audience member 3

Good morning, Dr. Lantos.

Dr. John Lantos

Professor.

Audience member 3

You've done remarkable work, particularly over the last 10 years in this area with preemies and what we call micro preemies. And you might know I'm a narrativist. I'd like to ask you, particularly, I would never do it in a crowd other than this one, I think, but you're a grandfather of a previously 23-weeker who is now 10 years old. and he was born at that weight, he was born at 23 weeks, one day, at about 500 grams. By two days, he missed the mark for which that hospital would not have treated him. Will would not be here. I wonder how much, or not how much, but in what way has your own close-up experience watching and being there with a family who went through it, in what way has that influenced or helped you to think about these things?

Dr. John Lantos

For those of you who don't know, Martha's my wife.

Dr. John Lantos

And the grandmother of that preemie. Personal experience is, shapes our views on almost everything and watching Anna and Mitch and Will go through that. Will was actually a twin and the other twin Sam died at one day so they offered treatment to both twins. Outcomes were radically uncertain and

Dr. John Lantos

We were blessed that Will both survived and did very well. He was left with what would be classified by the NICHD classification system as a severe impairment. That is, he is severely visually impaired and thus would fall into the statistics about either dying or surviving with a severe impairment. He's also an A student. plays soccer and is a pretty good pizza maker. He has a little bit to learn on that account. But we've also worked with a group of pediatricians who have had babies in the NICU, and I think our experience is mirrored in that group. We've published a couple of papers together now. And going through the experience, doctors react just the way parents do. It's interesting. Somehow, Common humanity trumps professionalism and so in the surveys my guess would be that most doctors who have had a baby in the NICU would fall out looking more like the parents in those surveys than like the health professionals.

Dr. John Lantos

One

Dr. Norman Fost

more? Oh yeah, you're back. Yeah, one more if there's time. Getting back to Wilkinson. If you had a preemie, if you had a predictor machine, and you knew with 100% certainty that a preemie was going to turn out to be profoundly impaired, such that death would arguably be in that child's interest, that continued survival was not in his or her interest. If you had that situation, I'm guessing you would be much more tolerant of parents and doctors in concert agreeing not to provide aggressive treatment for that baby. If that's true, and you can just tell me if I got that wrong, if you found out at age one, two, or three that the child had turned out that way, so now that it is 100% that the child is in a state where you think continued survival is not in his or her interest, particularly with more medical treatment, would it be appropriate to act in a way that would end that child's life at that point? And if that were true, easy or if that were acceptable, then might not more doctors be willing to treat aggressively at the front end. So I'm interested in your thoughts about that.

Dr. John Lantos

So just to be clear about what you're asking, you're saying should we legalize euthanasia for severely impaired three-year-olds? Something like that. Yeah.

Dr. John Lantos

No, they have not in Belgium, actually. In Belgium it's for children who have decisional capacity. They're about to in the Netherlands.

Dr. John Lantos

I don't think it would make the decisions any easier for the same reason that it doesn't seem to make decisions in the NICU easier to know that you can withhold or withdraw life-sustaining treatment later. That is, it's still a struggle and doctors will discuss with parents when they have predictors of just that sort of severe neurocognitive impairment whether to withhold or withdraw treatment. And the more severe the impairment in the NICU, the more likely it's gonna be severe impairment later in life. And many parents choose not to withhold or withdraw treatment. I think the number of cases in which the scenario you described would actually play out would be so minuscule that the likelihood that it could reflect back on decisions in the delivery room or the first weeks of life is also minuscule. I also think, I mean a good

Dr. John Lantos

clinical example of the scenario you described would be trisomy 13 or trisomy 18 where we have virtually 100% accurate prediction that kids are either gonna die or be severely impaired. I think that's a perfect situation for shared decision making. But what we found, somewhat surprisingly, is even given that information, many parents choose life prolonging treatment. And again, all I'm arguing is that should be the paradigm for 22 weekers.