Extreme Prematurity

Dr. Mark Mercurio

Thank you all so much for coming. This is a big night. This is another combined session from the Center for Bioethics across town. And David Smith, our director, is here, as well as Carol, who is the coordinator of everything we do over there. It's combined with the Yale Pediatric Ethics Program. And so we get to bring in the big guns when we combine forces. And so we've got Dr. John Lantos here. John has had a long and storied career at the University of Chicago. but recently has moved to Children's Mercy Hospital in Kansas City out in Missouri. And most of you have seen John's name over the years in a number of places. He has been a very prolific writer and speaker in this. He's written some marvelous stuff, some books that are eminently readable. Someone which, believe it or not, is actually sitting next to my easy chair at home, the one on neonatal bioethics, which I'm working through. And there's another one called The Lazarus Story or Lazarus Case, which is a great read. These things are very readable, very informative and insightful, as the articles are and as the talks are. And we're very fortunate that John has agreed to come tonight and talk to us about extreme prematurity. Thank you, John.

Dr. John Lantos

Thank you. How many are from the End of Life group versus the, what's the other

Dr. Mark Mercurio

one? The Pediatric Ethics

Dr. John Lantos

Program. Pediatric Ethics. Yeah, come on. How many people are... Doctors? Okay. And nurses? How many people have been in a NICU in the last 10 years? Okay. Quite a few. Okay. About half there, too. Good. So Mark mentioned this a little bit, but I'm going to just tell you a little bit about where I'm coming from before I start dealing with... Do I have to stay close to this? Can you hear me from way back here?

Dr. John Lantos

Where I'm coming from on these, I'm a general pediatrician, not a neonatologist, although much of my clinical work throughout my career has been taking care of kids with complex chronic diseases. So I started doing that sort of at a time. Today I think it would be called palliative care, although when I started doing it, it was called chronic disease and worked at a specialty hospital for kids with chronic disease, many of whom were NICU patients. survivors, although by no means all. A lot of traumatic brain injury and other weird congenital anomalies. And for 20 years I've been working as a bioethicist. My primary research interest has been bioethics, not exclusively focused on neonatal intensive care, but focused more broadly on innovative therapies and dilemmas around medical progress. And then recently became the grandparent of Primi twins, my stepdaughter gave birth to twins at 23 and a half weeks. So I have these different perspectives. My clinical work was at this hospital, which you can sort of see. It looks like San Diego, doesn't it? But it's really on the south side of Chicago. The lagoon was part of the expo, the 1892 expo.

Dr. John Lantos

La Rábida, as the Spanish would say, was Spain's pavilion in the 1892 expo. The original one burnt down, but they built a replica. Modeled after the monastery where Columbus prayed before setting sail for America, and therefore at the Columbian Exposition in 1892. It's one of the patients from the website, so not a HIPAA violation, I don't think. Mark mentioned a couple of the books, and this is a little Will Johnson, who's now four years old. His twin brother died in the NICU. So I bring all these different perspectives, thinking about sort of what it means for doctors making decisions, what it means for parents and families, grandparents making decisions for babies in the neonatal intensive care, and The take-home message by the end is going to be that something about the way we do things is not working very well, although when I say that, it works well most of the time. That is, for most babies who are born in the NICU, doctors and parents sit down and talk together. They make decisions. The decisions are relatively non-conflictual, although quite stressful, particularly for the parents. But people come to an agreement about whether to continue treatment or stop treatment, usually without too much animosity or bloodshed. But every once in a while it breaks down, and those are the interesting cases for bioethics, and we study them sort of the way scientists study rare diseases because they give us insights into normal physiology. And if you look at sort of the parent side of this phenomenon, dynamic first.

Dr. John Lantos

There are a couple of things to note. One, it's hard to get information about parents. There's lots of studies of doctors' attitudes. There's a few of parents' attitudes, but they tend to be thin studies. They don't tell you much. So the place I find you get a lot more information about parents and how they think is in narrative, particularly fiction and creative non-fiction, essays that parents write about their experience. Many of you may know Kenzaburo Oe's work. He's a Japanese novelist who won the Nobel Prize in Literature. He wrote a book called A Personal Matter. The book tells the story of a father who had a baby born with what's called a brain hernia. In the book, Oe, in real life, had a son born with an encephalocele. And so the novel... is intensely autobiographical. Most of his work, it turns out, is intensely autobiographical and tells and retells the story both of this baby's birth and about what it meant for him and his family to raise a child with severe disabilities, even to the point where in his Nobel Prize acceptance speech he talked mostly about his son. But in the book, the father doesn't want treatment.

Dr. John Lantos

it's a beautiful portrayal of what parents go through in trying to think about whether to save their baby or not. One of the things he writes is this sort of, it's not my fault. The fact that an abnormal baby was born to me and my wife was a simple accident. Neither of us is responsible. All we can do is leave him at the university hospital and make certain that he'll weaken and die naturally. We're blameless. Some parents want more treatment than the doctors think is appropriate. This was a narrative that appeared in the Hastings Center just in January by a mother who had a baby with trisomy 13. And she wrote, before Annie was diagnosed, we had never heard of trisomy 13. Once her chromosomes came back during pregnancy prenatal testing, the doctors discussed with us the possibility of terminating. We chose not to. Instead, we decided that we would treasure the time we had with her. Then she tells the story about how they took Annie home, and Annie came back with respiratory distress and was admitted to the PICU, and the intensivists seemed annoyed that we would not agree to a DNR order, and we later learned that a DNR order had been entered without our knowledge or consent. They eventually subpoenaed the records to find out what happened to their baby and found that not only was a DNR order written, but pretty massive doses of fentanyl and midazolam were given to their baby. And she says, we went to Annie's pediatrician hoping she could reassure us that all that went on was appropriate. And the pediatrician audibly sighed and said, sometimes it happens that a family just doesn't get it. You must understand that children can live on technology for a long time, essentially apologizing for the, I mean, apologizing not in the asking forgiveness, but in the explaining away what had happened in the PICU. Some parents start out not wanting treatment. change their minds and want treatment. This is a beautiful book that came out in the last year, I believe, by Vicki Foreman, who also had preemie twins, called This Lovely Life. And she talks about how when these twins were born, they didn't want treatment. And she went in and said to the doctor, we want the twins to be DNR. I was against resuscitation at birth, not in favor of prolonging life support. These babies were born too early. The doctor refused to make the twins DNR. It's not typical. She quotes him as saying, in memory, for us to include this type of order in the chart.

Dr. John Lantos

And then, two days later, with some enormous self-insight, she describes how her mood and her ideas started to shift. She writes, the day before, I stood outside of the NICU and cried and threatened to rip out every tube and line attached to my twins. But something had changed in the last 24 hours, something I wished I could explain to my father. Her father is a child psychiatrist who was saying, Don't let them save these babies. They're all brain damage. You've got to stop them. So she was fighting against her father on the one side and the neonatologist on the other. And she writes, while I was only three days into this ordeal, I had come to accept these compromised babies as mine. My milk had come in. I needed to decide if I would pump my milk or not, if there was a purpose to that act of motherhood. Everything was happening in the now and there was no standing back. I wished I could find words to describe how this whole mess felt oddly faded. That is somehow meant to be Evan and Ellie's mother. And she goes on to tell the story of what it means or meant to her and her family to live with these decisions. And it turned out Ellie died, Evan lived for eight years. Some parents feel just ignored. This was a famous book from a long time ago about events in 1978. It was published in 81 after an article that appeared in The Atlantic by Robert and Peggy Stinson. And they described the NICU staff as just ignoring their wishes. Wishes, judgments, thoughts rarely of interest to the medical staff who arrogated decisions to themselves as though we did not exist. Pessimistic assessments of Andrew's condition made by neurology that they were never mentioned to us by anyone. Some parents are ambivalent. This was an interesting paper that appeared in JAMA almost 10 years ago now by Doug Richardson, where he actually had one of his parents, one of the mothers of one of his patients in the NICU, write alongside his own writing about the decision-making process. And it makes an interesting and compelling back-and-forth sort of narrative. But he describes the case in sort of medicalese 42-year-old teacher, labored 24 weeks, three prior miscarriages, got steroids, delivered at 25, Apgars,

Dr. John Lantos

a baby responded to resuscitation, birth weight was 830 grams, so pretty big, 25-weeker, had RDS, necrotizing enterocolitis, sepsis, jaundice. But the mother writes what she was thinking at the time she went into labor. And she wrote, if I were to deliver now, the baby would have a 50-50 chance. So we decided if the baby was a fighter to intervene and help as much as possible. But if the baby wasn't responding, quality of life for the baby wouldn't be so good. So obviously, we want a baby who's going to be healthy and also have a good quality of life. And then four days after birth, she does her own personal assessment. It feels so good to have hope and to see her really fighting. I mean, she's a fighter. The baby met her criteria for continuing life-sustaining treatment, but she's also terrified. This tiny little baby, and she writes, she's so tiny and fragile, I'll touch her, but I can't really touch her. I don't know why, but I'm scared. I'm very scared. I don't want to break her.

Dr. John Lantos

And then she has this sense of personal parental duty. If I didn't have the hope and energy, I don't think she would have that much, the mother writes. So it's almost as if sort of she's conveying her spirit into the baby. If she didn't have the strength to sit there by the bedside and help her baby, her baby would die. I know many Duke fans who sort of felt the same way last night. If they weren't there, rooting.

Dr. John Lantos

Some parents don't want to be involved. This was another interesting story, and I'm going to get off the stories in a minute, but they're so fascinating in their variation that I think it sets the stage for some of the other sort of epidemiologic data from the doctor's perspective. But this one sort of cross-straddles the two. Annie Janvier is a neonatologist, as is her husband, Keith Barrington, and the two of them had a 24-year-old. weaker, and she's written some astounding personal essays about what this experience was like for her and the two of them. One appeared in Archives of Pediatrics and Adolescent Medicine, and she wrote in 2005, our daughter Violette was born at 24 weeks, five days. Violette had a stormy course. When she was sickest, so was I. I was better able to cope as she graduated and became more stable. By the time she was on CPAP, I was fine. That's almost the opposite of that. Giving the baby strength, the baby was giving her strength, but she also said that she loathed visiting the NICU, which is interesting since she's a neonatologist and so you'd think would be more comfortable than most parents. I loathed visiting while she was unstable. I hated being encouraged to participate in her care. I visited because I felt I had to show the nurses and the social workers that I was a normal parent who was bonding. I had to do kangaroo care and hold my 700 gram baby as she became dusky. She goes on, I held Violette and told the nurses that I wanted to. even if I dreamt every night of dropping her and seeing her eyes roll on the floor and her brain gushing out.

Dr. John Lantos

Baby at Risk is a book that Ruth Levy Guyer wrote where she went back and interviewed parents and they sort of, many of them echo the Stinson's. Nick used to have, misleads them, went out of their way to hide information. Another said, if the doctors and nurses knew what our life was going to be like, why shouldn't we have known? They need to be more honest with parents. So there's these mixed messages coming from parent narratives that some feel neglected, some feel lied to, some feel ambivalent, some feel passionately committed to their baby. But there is strong, complex, primal emotions. There's intense family pressures along with professional pressures on the parents one way or the other to continue treatment, to stop treatment. And they're all... sort of working on these strangely unconstrained decisions that is ultimately sort of for many of these decisions we turn to the parents particularly for babies uh... sort of in whatever you call the gray zone of parental discretion and say to them what do you want us to do keep your baby alive let your baby die it's up to you a

Dr. John Lantos

sort of decision that We generally don't turn to parents in pediatric care for almost anything else. I mean, for most things, we say, here's what your child's got. Here's what you need to do. And people listen to us. But for this, the most difficult and, in some ways, earth-shattering decision, we hand it to them and say,

Dr. John Lantos

your call. The doctor's dilemma is how do you deal with the variation in parental responses? Should we really expect parents to be able to make these decisions? Should we make the decisions for them? And if so, on what basis and after what sort of process?

Dr. John Lantos

Conventional wisdom on this that most of you who work in this field are familiar with, and maybe the others are too, is that the doctor's job is to sort of categorize the clinical situation into one of three zones. That is, either treatment's futile, or in neonatology you say the baby's not viable, too premature, we can't do anything, and so even if parents want treatment for their 21-week baby, we say, sorry, incompatible with life. At the other extreme, the chance for survival and intact survival is so good that even if the parents say, no, we don't want treatment, we say, tough, it's in the baby's best interest. That's not really your decision to make either. And then there's this middle domain that people have called the gray zone or zone where outcomes are ambiguous or uncertain. And doctors, in theory, determine the boundaries of the gray zone, and within the gray zone, treatment is optional, and that's where we're at. turn to parents to make decisions. The American Academy of Pediatrics talks about the gray zone and says within that zone, decisions about non-initiation and withdrawal should be made by the health care team and parents working together. Parents should be active participants in the decision-making process. Most official neonatal and pediatric societies, if you look all across Europe and Australia and New Zealand, Latin America, interestingly, is different. They...

Dr. John Lantos

sort of don't officially acknowledge that they ever withhold or withdraw treatment. Italy is a little bit like that, too. So there is some international variation. It's hard to tell what they mean exactly when they say they never withhold or withdraw treatment since they, like everybody else, obviously don't have the resources to continue treatment on every baby. Parents have said the same thing. Helen Harrison is a sort of famous parent advocate who had a 32-weeker herself, but who had some congenital anomalies and had a terrible outcome and has become sort of a spokesperson for family-centered care, which is sort of a code word for giving parents more of a say. And she wrote a statement along with a bunch of doctors published at pediatrics essentially saying parents have the right to make decisions regarding aggressive treatment. They should have all the same facts as the professionals. And so in the vast majority of cases, parents have no say whether a newborn is treated or not. That is,

Dr. John Lantos

born too early, born after the 25, 26-week threshold. But in those few cases that meet our criteria for ambiguity or uncertainty, they're asked to participate and even to ultimately make the decision. Or at least that's true in theory. In practice, it's not so clear that even that happens. There have been some studies to see whether practice reflects theory. For example, this was a survey of every neonatologist in New England, asking them to what extent they'd invite parents. Maybe you were one of the people

Dr. Mark Mercurio

surveyed.

Dr. John Lantos

And what role do neonatologists see themselves playing? And they asked the doctors, in your opinion, who should make the final decision to withhold resuscitation in the delivery room? 77% said doctors and parents together, shared decision making. If you ask them who does actually make the decision, only 40% said doctors and parents. And half of them said, I just make it all by myself. So they all know the right answer, but they don't put it into practice. Another survey, this was actually two surveys seven years apart, but the results were exactly the same. 500 people surveyed, and each one picked at random from the AAP neonatal section. They were given babies at 500, 600, 700, 750, and said, what do you do? Full resuscitation, comfort care, or defer to the parents' wishes? And here's what they found. 23, 24, 25, 26 weeks, resuscitation, comfort care, defer to parents' wishes, So at 23, most people would just do comfort care. At 24, most people would do resuscitation. At no gestational age did more than about a third defer to parental wishes.

Dr. John Lantos

Everybody seemed to feel like they knew what the right thing to do is, given only gestational age. Well, it was gestational age and birth weight.

Dr. John Lantos

The shared decision-making ideal seems to be more adhered to in theory than in practice, which is fuel for the anti-paternalist fire. Helen Harrison again. The anatologists don't discuss it. Poor outcomes, suffering of the baby ignored. Parental options to forego resuscitation are rarely mentioned.

Audience questioner on the outcome chart

That's not

Dr. John Lantos

quite a fair interpretation of this. Parental options to forego resuscitation are mentioned. They're, in fact, imposed. It's not that doctors are always treating. It's that doctors are usually making decisions by themselves. So it raises the question, are doctors really that autocratic? Are parents so systematically excluded from decision-making in a way that is morally troubling? And some studies suggest that this sort of overstates what's really happening, that these vignettes where you're given a forced choice Suscitate comfort care deferred to parents may not capture the complexity of what's going on or may capture a more doctor's sense of what's going on than parents' sense of what's going on. So here's a study where people went and asked parents. And they found 327 parents of very low birth weight babies from nine different NICUs. Most parents had surviving babies. About a third had long-term sequelae. So some babies survived unscathed. Some had problems... They interviewed them about a year after the NICU and interviewed them for about half an hour. These were the different centers, mostly around the Pacific Rim. They asked them, did you understand the prognosis? And anywhere from about two-thirds to four-fifths of the parents said,

Dr. John Lantos

yeah, they understood the prognosis. Did you expect sequelae? In most cases, about a third to almost two-thirds expected sequelae. Only a third of the babies had sequelae, so... It wasn't like they hadn't been told bad things would happen. If anything, the bad sequelae were exaggerated. The outcomes were better than they expected in most of the cases. Almost everybody thought their baby was going to die or feared that their baby was going to die. And many of them still feared that their baby was going to die, even after they took them home. And in most cases, the chances of a baby dying a year out from acute discharge are much lower than these numbers. So it seems like parents are getting the message. It seems like they feel like they're being talked to and they're participating. Maybe that what's happening is that doctors are trying to talk parents out of treatment, but because they are less willing to treat actually than parents are, so that parents are participating in the decisions most of the time, but most of the time they're participating in a decision to

Dr. John Lantos

treat. rather than a decision to withhold treatment. And some of the evidence for that comes from studies such as this. And by the way, I'm throwing up all these studies. I mean, if people have a question or comment, just raise your hand if I'm going to get to it later. I'll put you off if it's more interesting than what I'm going to get to later. We'll go with that.

Dr. Mark Mercurio

Because I can just get on the train and...

Dr. John Lantos

So here's the study. And there have been a couple studies like this with interesting nuances and variations. And I'll present some of them later in the talk. But if you talk to, these were doctors and nurses who work in NICUs, parents who had had an extremely low birth weight baby, that's the LBW, and parents who had a term baby and asked on a Likert scale, Do you agree or disagree with this statement? I believe an attempt should be made to save all babies regardless of birth weight. Doctors and nurses strongly disagree with that. Parents

Mixed presentation and audience boundary fragments

are more unpredictable.

Dr. John Lantos

Some strongly disagree, some strongly agree. A lot are in the middle, but overall they tend much more to the agree side of the chart than the disagree side. They want more treatment than doctors think is is appropriate. So things sort of don't add up here. Critical parents say doctors over-treat and withhold information about poor prognosis. Doctors say parents won't let them stop even when treatment is futile. So they sometimes have to make decisions unilaterally to stop treatment. And they think it's inappropriate to treat all babies regardless of birth weight. Vocal parents write about their dissatisfactions in the Atlantic and publish books about them. But when you actually survey most parents, the ones who don't write say,

Dr. Mark Mercurio

Yeah, the communication was

Dr. John Lantos

pretty good. I mean, that proves what we've known all along, that people who write books are weird. So that's not surprising. Everybody says they favor shared decisions, but most decisions seem to be made by the doctor alone, and nobody talks about money. Doctors don't talk about money.

Audience questioner on cost and insurance

On the last slide, was any analysis done about parents' views related to

Dr. John Lantos

I've never seen a study of parents' views about who would pay the bill. I haven't seen studies now that I think about about doctors' views about who will pay the bill either. There are studies of what the bill would be and how it compares to the cost-effectiveness of NICU care that I'll get to at the end.

Audience questioner on cost and insurance

Right. Exactly.

Dr. John Lantos

Right. Unless they're enormously wealthy, which would mean if... Even when they're enormously wealthy. That's right. So we collectively subsidize this. And in a sense, that creates this weird, unconstrained choice. I mean... When parents are asked about a decision for their tiny baby or their grandmother, it's usually in the context of, you know, money is not a part of this decision. The weight is a part of every other decision. This one is disconnected from money. Whether the medical care is paid for, of course, having a premature baby or having a baby with a complex chronic condition is an enormous financial cost on the family. And we all know that NICUs make a lot of money for hospitals, and so there's a financial incentive for doctors to treat, but doctors tend to be more pessimistic. There's a financial cost for parents in having a survivor of the NICU, probably less than having a non-survivor, but they seem to want more treatment in spite of that.

Dr. John Lantos

Can doctors convince parents to forego treatment? So doctors say not every baby should be treated. Most parents say we want treatment regardless of birth weight. Is this an informed consent problem? That is, what would happen if you standardized counseling and really hung a lot of crape? That is, explain to the parents just how bad it was going to be if we say they're 23-weekers. They did a sort of experiment with this. at a hospital in Portland, Oregon, that was published in the Journal of Pediatrics last year, where they put in place a comprehensive standardized counseling program. This was their schema for the counseling program. They thought at 24 weeks or below, parents should be told the treatment was inappropriate. For them, the gray zone was 25 and 26, and above 26, they thought every baby should be treated. In the handout that they gave to parents, they said, we do not recommend NICU care for infants more than less than 25 weeks because the chance of NICU death or significant neurologic injury is generally 50% or more. And we believe it's not reasonable nor fair to insist on resuscitation of these babies who have enormous long-term health problems that we can't help you cope with. So they told all the parents this. And then they looked at what parents decided. And they looked at two points. The study was women who came in threatening a premature delivery because they wanted to get them before the baby was born. So many of the parents they counseled ended up not actually having to make a decision because they didn't end up delivering prematurely. But after counseling for these women who came in in early labor, these are the weeks on the side, those are the days, 22, 23, 24, 25, 26. That's how many said, I want my baby resuscitated.

Dr. John Lantos

So it went up. Some even at 22 weeks said they did. By 324, steady increment. Then they looked at what actually happened to the babies who came in, and what they found was a little difference. Babies at 22, there were some parents who said they wanted resuscitation. No baby got resuscitated. By 324, more babies got resuscitated than parents had initially said, and the same with 25 and 26. In fact, if you look at the shift at each gestational age, 22 went from 11% to none, By 3-24, the gestational ages where the doctors were saying, don't do this. It's a bad idea.

Mixed presentation and audience boundary fragments

Parents said, screw you. We want it anyway.

Dr. John Lantos

And more agreed when they saw their baby than even had initially before counseling said they wanted it. Interestingly, at 25 weeks, even though the

Mixed presentation and audience boundary fragments

shift went in the same direction,

Dr. John Lantos

17% still refused resuscitation. Those babies were allowed to... die so it seems like parents put their maybe not their money where their mouth is but their values where their choices where their values are and when they have a baby they not only say we want resuscitation in theory but in practice say it even when the doctors are telling them it's a bad idea An interesting

Mixed presentation and audience boundary fragments

question about parents

Dr. John Lantos

that people ask all the time. So why do parents want treatment that doctors don't recommend? And it seems like there's at least two possibilities, or broadly speaking, two categories of possibilities. One, which is a commonly held view among people who work in NICUs. They just don't get it. This is going to ruin their life. And if they knew what we knew, They wouldn't make this choice. So it's a failure of communication. It's a failure of informed consent. And neonatology, I hear this mostly from neonatology fellows, you know, because they're young and enthusiastic. They're like, we should make a videotape of these severely handicapped kids with trachs and G-tubes seizing all the time and make them watch it so they can see just how bad this is going to be. And then they'd agree with us. versus the other theory is you can show them the video. They get it.

Audience questioner on the outcome chart

They

Dr. John Lantos

just disagree

Audience questioner on the outcome chart

about the value of life

Dr. John Lantos

with disabilities. So this neonatal fellow would say, you know, if I saw that videotape, I would say, I don't want that. But

Mixed presentation and audience boundary fragments

maybe parents see that and say, better than the alternative.

Dr. John Lantos

Some studies have tried to tease this out.

Mixed presentation and audience boundary fragments

There's a study from Hong

Dr. John Lantos

Kong, almost 600 people. 135 health care workers, doctors and nurses. They found mothers of term babies, and they found mothers of preterm babies, 300 mothers of preterm babies, and they gave them health states to rank, rank order. Which one of these is the worst? Which is the best?

Dr. John Lantos

Of the six, here were the three that were spread out along the bad end of the spectrum. Death was one. The second one was severe global impairment, which they described, this is a little abbreviated, but kid in a wheelchair, intelligence of a one-year-old, When he was older, unable to speak, read, or write. Incontinent, no independent activities of daily living. Severely physically and cognitively impaired. And then they had moderate global impairment, which was not quite so bad. Crutches, special school, can't read or write, can't live independently, but wasn't wearing diapers. And then they asked these three different groups, the doctors, the professionals, the parents of term babies, parents of preterm babies, to rank order these. Which is the worst? Which is the second worst? Which is the best? And this is a complicated slide, but briefly, health care workers, mothers of term babies, and parents of preemies. The blue are the people who said death is the worst, severe global impairment is the next, moderate is the best. Red is the people who said severe global impairment is worse than death, death is in the middle, and moderate global impairment is better than those. So the big take-home point here is only a small group of health care workers thought death was the worst, and a much larger group thought severe impairment was the worst. Mothers of term babies were in between, and the parents who'd actually had a preemie were the least likely to rank things in that order. So what percentage thought severe disability was worse than death? For doctors, it was 55. Mothers of term babies, 40. And parents of preemies, 25%. So it seems like the more experience you have taking care of a preemie, the less likely, as a parent, the less likely you are to think this. And in this same study, should we try to save babies at all costs? Health care workers are the least likely to think so. Parents of term babies in the middle parents of preemies the most likely to say that.

Clinician audience participant

Not all

Dr. John Lantos

parents though. I mean, parents of preemies, 25% thought death was better than severe disability. And 50% said, no, we shouldn't try to save babies at all costs. So a lot of variation, but a big contrast between parents and health care workers.

Dr. John Lantos

Quickly, one other study, same study design, neonatologist, nurses, adolescents they included this time who had been preemies or were term babies and the parents of the adolescents. They were the way they described the different health states. Jamie was the best. Pat was the worst. And they asked people to rank these, not rank order them, but just zero being worse than death, one being perfect

Mixed presentation and audience boundary fragments

health. And here's what they found, that health professionals and parents

Dr. John Lantos

are HP and P. For the two best babies, the health professionals and parents agreed with decrement in quality of life. But for the two worst babies, the health professionals crossed the worse than death line, whereas the parents and the teenagers said, yeah, it's bad. It's 0.2 on a zero to one scale, but it doesn't cross the zero line. These studies suggest parents are more tolerant of disabilities than doctors and nurses. They rate quality of life with disability higher than do doctors and nurses. They're more likely to opt for treatment, even if survival is with neurocognitive problems. And parents who've had a preemie are more likely than parents who haven't to say that. There's problems with all these studies, right? Some people say, yeah, well, once they've made a decision and they have a baby, You're saying, do you wish your baby was dead? How can anybody say that? So it's a flaw in the design. It's a self-fulfilling moral commitment that they've made. So now it shapes their values. Another flaw with these studies is there's no interviews with parents whose babies died,

Dr. John Lantos

which would be an interesting group, babies who went through NICU care or chose not to. And most disabilities in the surviving preemies are relatively minor. because most disabilities in surviving preemies are relatively minor. So the parents who say, who've had experience with this, mostly have not had experience with kids who are the most severely disabled. But that would be a study that would be even harder to do and is waiting to be done. How are we doing over time here? Okay. So one response of doctors to this is, we just need more data.

Dr. John Lantos

In particular, we need prognostic data because the reason for all these ambiguities, many doctors think, is because of the prognostic uncertainty. Whereas, if we could say more precisely, it's not 30% of babies who have disabilities or 50% of babies, but your baby is going to have these specific disabilities, then... we'd be out of that zone of ambiguity or uncertainty and into sort of a zone of science and hard data. And so neonatologists have been working hard on evidence-based bioethics, as some people call it, refining prognostication, proving predictions for individual babies. And this view is sort of that ethical problems are really epidemiological problems. If we had the data, the... ethical dilemmas would go away. And the goal is to precisely define futility in the gray zone and give some hard data for shared decision-making. And the sorts of studies that people do who believe this are like this paper that came out in the New England Journal a couple years ago out of the National Institute of Child Health and Development Neonatal Network, where they retrospectively reviewed data from, I think, 13 tertiary care neonatal centers.

Dr. John Lantos

came up with precise prognostic predictors based on data from the last five years and based on more than just birth weight and gestational age. And they've now put their algorithm on the web so you can go to this website and for any baby you can plug in these five factors, gestational age, birth weight, sex of the baby, whether it's singleton or multiple, and whether the mom got antenatal corticosteroids and get a much more refined prognosis for that baby. using things that are available at the time of delivery. And it's a fun website to play with, right? You go and you fill in the blanks, 23 week or 450 gram female singleton whose mom got steroids. And it says in the NICHD neonatal network, this is the outcomes for all infants. And then they looked at just the ones who made it to the NICU who got intubated and ventilated. So some babies weren't treated in the delivery room. So they counted those and didn't count them. So you can look at it either way. You know, you put in a 25-weeker, 575 male, twin, his mom got steroids, you get the exact numbers for survival, survival without profound impairment, survival without moderate to severe impairment. Does this help answer the question parents want to know, which is not your baby has a 30% chance of moderate to severe, but will my baby be okay?

Dr. John Lantos

what parents want to know and even that question is not quite precise enough because it could be one of two questions and the answer depends on the precise meaning of the question so for example if the question means what are the chances that my baby we're in the delivery room now my baby will survive and be unimpaired these are the numbers for a 500 gram baby 23-week boy, 23-week girl, 24-week boy, 25-week boy, 25-week girl, and if what that question means, will my baby be okay, is will my baby survive and be unimpaired or a greater than 50% chance? None of these will be okay. They all have less than a 50% chance, and this is the sort of data that the Portland, Oregon folks use to say there's less than a 50% chance. But the parents could be asking a slightly different question. They could be asking, if my baby survives, will he be okay or she be okay? And here are the same numbers from the NICHD neonatal network for those babies. Among survivors for 23-week boys, 57% are unimpaired. Among survivors for 25-week girls, 76% survive without.

Dr. John Lantos

neurologic problems. So if okay means more than 50% of survivors survive without neurologic problems, they're all going to be okay. Yeah? I

Audience questioner on gestational-age uncertainty

think in your analysis there, the one problem I have is the gestational age. How can you tell? I mean, that's the issue. I mean, you can say, I just think it's very difficult judge gestational age, so are there any other clues that you could use to judge by different standards what the gestational age is?

Dr. John Lantos

I mean, the best, I mean, what we have is last menstrual period and prenatal ultrasound.

Audience questioner on gestational-age uncertainty

And sometimes you don't know.

Dr. John Lantos

Well, the prenatal ultrasound, you don't need to know last menstrual period, but it has a one to two week range of uncertainty. It's

Audience questioner on gestational-age uncertainty

just 23 weeks. It could be 21 or it could be 25.

Dr. John Lantos

Exactly. So take it for what it's worth. It's the best we got. And it's not nothing. Most neonatologists will say, yeah, that's what we got going in. And then we look at the baby. And sometimes babies appear to be less mature than we thought. And sometimes they appear to be more mature than we thought going in. So they always want to have a little... wiggle room on a prenatal promise about what they're going to do in the delivery room. But a lot of times, these match up well with the physical examination. And then if you have last menstrual period and the prenatal ultrasound and the physical exam all consistent, then it's probably a pretty good estimate of actual gestational

Audience questioner on the outcome chart

age. I'm one of the slower kids in the school. What does the 16%, the column that's in the middle, it's 50% if they survive unimpaired. So if they survive,

Dr. John Lantos

57% will be unimpaired, 23-week

Audience questioner on the outcome chart

boys. But then is the 16%, how many, what percent? That is, of all the 23-week boys who are born at 500 grams, many will die.

Dr. John Lantos

So they won't be in the survival group. So 84% is either they died, or if they survived, they were unimpaired. Let me show it to you a different way, because I bet you're not the slowest one. You're just the bravest

Mixed presentation and audience boundary fragments

one.

Dr. John Lantos

Here was a study that came out of rainbow babies in Cleveland. How many babies do well? Again, the same sort of categories. No impairment, impairment, died, and a little loss to follow-up. So here were their raw numbers, 500 babies in the 80s, the 90s, and the early 2000s. And so you can see the numbers who survived without impairment get bigger and bigger. And these were the percentages if you're taking this rate, this percentage over the whole bar. That's what this means. So 158 out of 496 is 32%.

Dr. John Lantos

32% survived unimpaired, 40% survived unimpaired, 50% survived unimpaired. But if instead of taking the ratio of survived unimpaired over the whole bar, you just take it over survivors, let's get rid of the babies who died. Now it's 158 out of 218. Now 72% of survivors are unimpaired.

Dr. John Lantos

32% of all babies survive unimpaired. Does that help?

Audience questioner on the outcome chart

Yes. This slide is much clearer for me.

Dr. John Lantos

Okay. Good. And so how many do well? 50% of all babies in the latest data survive unimpaired, but 76% of all survivors are unimpaired. And the trends are interesting, too. Because the trend in babies who survive unimpaired is clear, 30% to 40% to 50% over the time period. But there's no trend in unimpairment among survivors. It went from 72% in the 80s to 65% to 75%. It's always been sort of two-thirds to three-quarters of survivors. And that was babies under 1,500 at one time.

Dr. John Lantos

Same thing if you look at a different center. That was Cleveland. This is just a different way of portraying it, but Edmonton recently published their data broken up by different time periods, each chart being one specific gestational age with all the uncertainties. So these were their 24 weekers from 1974 all the way to 2003. Same category. Survived unimpaired, survived with impairment, osteoporosis, and died. Survival rate improved. The number of unimpaired survivors improved the percent of survivors who were unimpaired except for the last period. And whether that's a trend or an anomaly, except the last period, it was about half of survivors. Some years, a little bit more. Some years, a little bit less. So it seems to be pretty robust data from a lot of different centers. Yeah?

Mixed presentation and audience boundary fragments

What about the proportion of babies that are borderline that are born?

Dr. John Lantos

How many babies are born at 23 weeks? Are there more babies born at 23 weeks now than there were? Seems to have stayed exactly the same for 25 years. So the total rates of preterm birth have been going up slowly and steadily. But most of that is 32 to 36 weeks. Most of that is near term. And the rate of extremely low birth weight or extremely low gestational age babies has stayed almost exactly the same. Interestingly, yeah.

Mixed presentation and audience boundary fragments

What's the definition of honey

Dr. John Lantos

here? Yeah, great question. People use different definitions, although the usual is a comprehensive neurologic and developmental assessment done at 18 months or two years, or some people do them at three years or five years. So it's some relatively... long-term follow-up with a standardized sort of testing. And then what you pick is your cutoffs. Here, I'll show you. We'll skip that. We'll just go to that. Survival is clearly better. Disability rates among survivors. Here are some of the things. So Bailey scores, which is a developmental assessment that works sort of like an IQ. So 100 is considered average. 70 is considered severely average. Delayed. And so they did these Bailey scores for babies at less than or equal to 23, 24, 25. They looked at any developmental disability. So were they falling short of their milestones? Usually by two standard deviations. Did they have severe disability? Did they have no neuromotor disability, no sensory disability? Sensory is primarily blindness and deafness. So blindness, deafness, physical. milestones and cognitive milestones, but with a cutoff, a permissive cutoff, two standard deviations, so

Dr. John Lantos

be the equivalent of an IQ of 75 or 70. So not severely impaired. And some people break it down into moderately versus severely. Here's another way of looking

Mixed presentation and audience boundary fragments

at it.

Dr. John Lantos

isn't really a trend across the gestational ages. 25-weekers don't do any better than 23-weekers. Yeah, here's another way of looking at that. So again, this is cognitive scores, the Kauffman Assessment Battery for Mental Processing Composite, or the other, you know, again, boys, girls, 23, 24, 25, and these are the mean scores. 100 was normal. These were full-term controls. So the full-term kids must have been from Lake Wobegon. They were mostly above average, slightly. But again, 23, 24, 25, not much difference. Girls do better than boys, but girls are smarter than boys. We knew that. But 23-weekers, 24-weekers, I mean, you

Mixed presentation and audience boundary fragments

can imagine

Dr. John Lantos

sort of a trend inching up. And you know you have to get to here by term. But the question of, is there a break point here? It doesn't seem to be. And there certainly isn't at 25 weeks compared to 24 weeks. So this idea that sort of the gray zone ends at 24, 25, 26, if it's measured in terms of outcomes for survivors as opposed to survival rate, is pretty arbitrary.

Mixed presentation and audience boundary fragments

This just suggests to me that just looking at birth weight and gestational age, Right. And that's the doctor's dream, that if we could come up with better individualized prognoses, we could say, we could predict this at birth and predict this at

Dr. John Lantos

birth.

Mixed presentation and audience boundary fragments

So even though you're a 23-weeker,

Dr. John Lantos

we'll get your genetics, and we'll get your PO2s, and we'll get your cerebral blood flow, and we'll get your interleukins, and we'll assess your social environment because the three strongest predictors of neurologic outcome are whether a baby has a big bleed in their head, whether they have sepsis, and whether they're poor. So we'll make everybody rich,

Mixed presentation and audience boundary fragments

and then we'll all do better.

Dr. John Lantos

I'm going to skip this because it's sort of... But this is the same sort of thing. It actually goes over your point again. If you look at these graphs from Edmonton where they do it by 23, 24, 25 weeks, the percentage of survivors with disability at 23 weeks was 60%. At 24 weeks, it was 12%. At 25 weeks, it was 25%. My three workers seem to do worse in Edmonton. And interestingly, in Edmonton, if you look at their... data on 23-weekers, they stopped treatment.

Dr. Mark Mercurio

They were getting better, better, better, better, better

Dr. John Lantos

until 01-03. No survivors. So they made a policy.

Mixed presentation and audience boundary fragments

Outcomes are not

Dr. John Lantos

good enough to continue to treat. Another way to look at this just briefly, and I'm really going to be done soon, is nationally. So if we're saving more babies, and the more premature you are, the more cerebral palsy there is, there should be more cerebral palsy. So people have looked at this in multiple, multiple studies from multiple, multiple different countries. And this is a paper that appeared in 2006, Clinics in Perinatology, aggregating 50 of those studies over 50 years, from 1950 to 2000. And what you can see is not a whole lot of a trend. Two per thousand. Little blip in here, interestingly. Seemed to be going up. in the early 80s, which may be correlated with sort of a period of rapid innovation without a lot of study of what was working and what wasn't in the intensive care. That's when I was a resident, so it could have been my fault. But it certainly was one of the reasons I got into biomedical

Dr. Mark Mercurio

ethics, because I saw this.

Dr. John Lantos

But it seems to have tailed off. And if you just look at prevalence of CP among babies who were born at less than 1,500 grams, just among survivors. So how many babies are there with CP who were born at less than 1,500 grams. It was high, went down a little bit, went up a little bit, now seems to be coming down again.

Dr. John Lantos

Last thing I'm gonna talk about, what about cost? This is a little complicated data, and I can summarize it by saying neonatal intensive care is among the most cost-effective of medical therapies. Not intensive care therapies, but in dollars per quality-adjusted life year ranks up there with things like pap smears and flu shots? Stick with me. And I'll give you two studies that will either convince you or not, but they're interesting studies. This was one from Australia. They broke them down into three different time periods and then looked at 100-gram increments in birth weights The two different bars were two different measures of quality of life adjustments. One was QALYs, one was DALYs, disability adjusted life years. I don't understand the difference, but the numbers were about the same. What they found, if you just look at the most recent time period, number three, which was the late 90s, $2,000 to $4,000 per quality adjusted life year for babies 500 to 600 grand. $3,000 per QALY.

Dr. John Lantos

This went up to about $4,000. Those were actually making money. I don't quite get that. But about $2,000 or $3,000 per quality adjusted life year.

Dr. John Lantos

How can that be for the tiniest babies? The reason is because babies who die tend to die quickly. This was a study from our NICU. No, this was from the Vermont Oxford Network. Among 400 to 500 gram babies who die, when do they die? 70% die within 24 hours.

Dr. John Lantos

So in fact, the ones who have the most expenses tend to survive long term. This is, by the way, the opposite of adult intensive care. The more time you spend in the unit, the more likely you are to die. So if you're going to get out of the adult ICU, you want to get out on the first day because with every day you're in there, your chances of ever getting out go down. The NICU, it's just the opposite. It's every day you're in there.

Mixed presentation and audience boundary fragments

Your chances of getting it

Dr. John Lantos

out could look awful. Here's a great study. Lots of numbers. Came from a Harvard economist. I shouldn't say that here. Most places that's a sign of respect. They compared 1960 and 1990 cost-effectiveness of treatment for babies at different birth weights. They put in the number for the value of life and they looked at the total cost. So some interesting things. Total costs for babies less than 1,000 grams went way up for babies at low birth weights because more of them survived. They were cheap

Mixed presentation and audience boundary fragments

here because they all died. Got cheaper with each incremental

Dr. John Lantos

birth

Mixed presentation and audience boundary fragments

weight, whereas here it went up

Dr. John Lantos

and then went down again.

Dr. John Lantos

They then looked at the change in costs and the change in value where you assign a value to each year of life. And then they did some sensitivity analysis. If you say a year of life is worth $100,000, you get this. If you say it's $50,000 and you do a discount rate, the longer you live, the less each year of life is worth. All sorts of cool stuff. But the change in cost from 60 to 90 costs a lot more. The change in value of what you get for it is a lot more even than what it costs because you're buying a lot more years of life with your NICU costs. or they then compared it to other interventions. So flu vaccine for kids, treatment of babies 1,000 to 1,500 grams is worth about as much as flu vaccine, costs about as much as flu vaccine in dollars per quality. Babies less than 1,000 cost a little bit more, but about a third as much as a

Mixed presentation and audience boundary fragments

pap smear every three years, about

Dr. John Lantos

a third as much as treatment of hypertension, and about,

Dr. John Lantos

ACE as much as biped surgery. So sort of pick a comparison. Whatever comparison you pick, NICU care seems to be a bargain. Summary, and then I'm done. Parents' views about treatment vary widely. Some want everything, some don't. Doctors and nurses want algorithms, cutoffs, prognostic accuracy. NICU care is cost-effective at every birth weight. Outcomes for survivors are no different by gestational age in this extremely premature age range. 23-weekers do just as well as 26-weekers. It seems like part of what's going on here... Actually, I'm not even going to do that. That's too complicated.

Dr. John Lantos

I think we've misunderstood parents. We've developed models for decisions that take the wrong elements of autonomy and combine them with the wrong elements of paternalism. We give parents... the most autonomy, where the decision we're asking them to make is the most horrific. That is, to ask parents, do you want us to stop treatment and let your baby die as the first time, really, we include them in a shared decision-making process is really bizarre. And I think for most parents, something almost impossible for them to deal with. Not all parents. But for most, although even there, I think most parents come in with their minds made up. They know what they want, so it's not the counseling. We focus on the baby's

Dr. John Lantos

interests only when our algorithms predict certain outcomes. I think, like it or not, babies don't have intrinsic meaning in this decision-making process. They're assigned meanings by our stories or by the parents' stories. And we have to try to figure out what those meanings are in order to really understand what sort of involvement the parents would want to have. I see three coming challenges in all this. One is the challenge of better prognosis with, if you imagine, personalized medicine and more individualized prognostication. That may make things easier, but it may make things harder.

Dr. John Lantos

In my opinion, it will not solve these problems. It will just change the tenor of the discussion with parents and perhaps lead to interesting backlashes, as we've seen in 2013 and 2018. Earlier fetal diagnosis is coming. That is, I think we're going to be much better at picking up both congenital anomalies, but also markers for premature delivery. People are getting much better at figuring out the physiology of early labor, and so we're going to be able to counsel people earlier in pregnancy. So imagine this discussion with a pregnant woman who comes in at 14 weeks of pregnancy, and we say, you have all the markers that suggest you're going to go into labor at 24 weeks. Do you

Dr. John Lantos

want to terminate the pregnancy now? Or do you want to keep going? it'll be a variation on prenatal diagnosis for congenital anomalies with even more uncertainties associated with it. I think it'll force a showdown in some ways over the questions of the moral status of the fetus, which have been sort of haunting this field like a ghost for a long time. And better prenatal care will allow survival of babies who are more and more impaired, and to the extent that this difference between doctors and parents about the value of life with greater of impairment is real and not sort of an artifact of that self-fulfilling moral commitment or lack of information, I think we're going to find conflicts about medical futility and about which babies deserve treatment and not becoming more intense rather than less as our prognostic ability gets better.

Dr. John Lantos

My test has dignity slide. And there's Will. I think the parents

Audience questioner on religion and disability

probably did not see enough in terms of who, you know, to give up, who the immature babies, because not just, you know, they will suffer for their whole life. They may also maybe look down, you know, by their friends, neighbors, or, you know, whoever. The other thing I think, I don't know if you have that data related with religion's role in the parents' decision about what to do with those immature babies.

Dr. John Lantos

I completely agree that it's, I wouldn't say an impossible decision for parents, but

Audience questioner on religion and disability

terrible. Yeah, everybody

Dr. John Lantos

talks about religion, although I think all religion. I haven't found a religion yet that says, smother him with a pillow. I mean, it seems, I don't mean to be completely flippant here, but I think it's less which particular religion and more whether one is religious.

Dr. John Lantos

not whether you're Catholic or Hindu or Jewish, but the importance of spirituality in life. I mean, I think the atheists approach these decisions very differently, and it may just be a coincidence, but Oregon has the highest percentage of atheists in any state in the country. They're the place where this NICU study was done. They're the first state to have legalized assisted suicide. So, I mean, I think... lack of religious belief versus religious belief may be the more important distinction than which religion.

Mixed presentation and audience boundary fragments

What about differences in countries? I noticed the references that you gave were mostly from the United States or from Australia. What about Japan or China?

Dr. John Lantos

I know something about Japan. I don't know anything about China. Japan reports the highest birth, gestational age specific survival rates in the world. They're now reporting, they've published in peer reviewed journals, 30% survival among 22 weekers. Most people in other places think there's something fishy, but it's hard to tell what. whether it's referral

Mixed presentation and audience boundary fragments

patterns. But they are very aggressive. But then the next question I would have is, 30% survive, but what proportion of all babies are in the denominator?

Dr. John Lantos

Yeah, that's the fishiness. That's what everybody wants to know. Since they also have fewer NICU beds per population than most countries. Fewer. And Europe has fewer than the United States. We know a lot about Europe. Although Europe is, of course, not monolithic in its approaches to these. So the Scandinavian countries look much more like the U.S. in terms of aggressiveness and low birth rate and gestational age. Holland looks more like Oregon, and until recently had a cutoff at wouldn't treat any baby under 25 weeks, and had a protocol for neonatal euthanasia. Interestingly, I have a friend who actually wrote the neonatal euthanasia protocol, who's a neonatologist, and he says the treatment protocols have started to shift in large part due to public pressure. Parents who are delivering pre-meets and cross the border to Germany, which looks much more like the U.S., and get treatment and then go talk to the press and say, if I had delivered in the Netherlands, my baby would have died. And here's his picture. And so the doctors are being forced by the public pressure to lower the threshold for resuscitation. Italy says they resuscitate everybody.

Dr. John Lantos

So there's widespread variation from country to country, but also within different places in the same country. Even places in the same city have different protocols. It seems to be very quirky and idiosyncratic.

Audience questioner on cost and insurance

problem. I agree.

Clinician audience participant

We have a lot of data. Maybe the answer is to educate doctors better, you know, teach them how to be better doctors. I mean, you know, I, in my own experience, I mean, I've never had a situation where, you know, a parent had to make a very difficult decision in that gray zone and you sort of just dump it in their lap. That just never happens. I mean, as a real caring physician who understands the subtleties. And every case is completely different. And that's why you can't rely on numbers so much. You have to look at every case individually. So that just doesn't happen because when you ask, you don't just go in and ask a parent to make a decision. There's always a communication nuances, what the doctor is feeling. what the attitude is, and there's always an interaction there. So it's not like you're just dumping the autonomy on the parents. That just doesn't happen in real practice.

Dr. John Lantos

Yeah, I mean, I agree with everything you said. I think that the

Mixed presentation and audience boundary fragments

tension

Dr. John Lantos

has to do with the way NICUs are stacked. So, I mean, ideally, a parent would develop a trusting relationship with a doctor and the decision would play out over

Mixed presentation and audience boundary fragments

time.

Dr. John Lantos

And maybe you get a trial of therapy and you'd have defined endpoints that you'd look at. I mean, is this sort of consistent with your experience? But I think more and more, well, first of all, nobody chooses their neonatologist. So there's no sort of... parental input into who's on the night they go into premature labor. So if they get you, they'll get one approach. But my hunch would be your colleagues may have slightly different approaches. So who you get in the initial conversation is going to vary at random. And then when you go on or off service varies at random. And so sort of trusting relationships are constantly being interrupted. I mean, this was one of the most maddening things for my daughter when she was in the NICU. She never knew who was going to walk in and say, I'm your attending today. And some she liked and some she didn't like. And

Dr. John Lantos

she had no choice. I mean, I don't think her experience was unique. And if anything, it was uniquely good. She's an epidemiologist. Her husband's a malpractice attorney. I think she got sort of gold standard care. And still, that relationship that you're talking about, I think is the solution, is the exception.

Dr. Mark Mercurio

We've got time for one more question. This lady up here has been waiting patiently for a while.

Chaplain audience participant

slightly different take on the role that religion can play in this. I know that the Pope has just recently said that all life must be sustained with artificial nutrition and hydration. And I don't know whether that applies in neonatal intensive care units or whether he was just talking about older patients. And the other thing I would say is that there are a number of religions for whom life after life in this body is a real and good thing. So that someone who is religious may very well think that death is not the worst outcome based on the religion with which they identify. So I think that rather than saying it's religious people versus atheists, I would like to see you look at religious people with more nuance.

Dr. John Lantos

Thank you. I totally disagree. But thank you. And I only disagree because of overwhelming data about the effect that any... I mean, if you separate people by their answer to the question, how religious do you consider yourself to be, without looking at the Pope or any particular doctrine, and then you look at their attitudes about life-sustaining treatment, withdrawing life-sustaining treatment, end-of-life care... There's a dozen studies now that show a robust relationship between self-described religiosity and wanting more aggressive treatment at the end of life. So this paper I've been thinking about writing because I think there is another strain in religion that is exactly the one that you're talking about that seems almost contradictory to this current attitude when sort of religious people put their faith in God, not in intensiveness. I want to write a paper, When Did God Become an Intensivist? It seems like people do sort of look to medicine in a different way in relation to their religious beliefs than they used to. I have data that suggests that's not true. It's an anecdotal.

Chaplain audience participant

No, I'm a chaplain. I'm not a dativist.

Dr. John Lantos

Okay. Stories count, as David, I mean, He's in your

Dr. Mark Mercurio

experience. We had John Parris here last year. He would be an exception. His quote on that, you can get him to give a quote for your paper, which was, when religious families insist that everything be done because God is going to create a miracle. John Parris, for those of you who don't know, is a Jesuit priest from Boston with his heavy Boston accent and bioethicist as well. His answer to that is, I ought of God to need a vent. It's a view similar to, I think, the one that, maybe you can quote John here like that. One more. Barb, last question for the night, please.

Audience questioner on gestational-age uncertainty

I have a question that looked at the way that it was presented to

Audience questioner named Barb

parents because it strikes me that we talk about survival or we talk about you only have a... It's all the negative instead of presenting data in two different realms, in two different ways, and see if that influences people's decision and thoughts.

Dr. John Lantos

So there's a group that started in Columbia and now the primary investigators moved to Pittsburgh that tried to do exactly that. And the only thing they varied. So when you think about how you present data, you can imagine lots of things you could vary. I mean, the kind of things that I presented about survival versus... But the only thing they varied was, do you say how many babies survive or do you say how many babies die? So for babies born at this gestational age, 30% survive versus for babies born at this gestational age, 70% die. And then they wanted to ask, so do you want us to resuscitate or do you want comfort care? The IRB would not let them go to real parents in the NICU. So they had to do surveys of randomly selected

Dr. John Lantos

non-NICU adults. But they found a strong correlation. Interestingly, more among non-religious people than among religious people. So it's another one of the religious people made up their mind and how you presented the data didn't. And they were more likely to go for aggressive treatment than for comfort care. Among the non-religious people, if you presented survival data, more said, I'll go for that. If you presented death data, mortality data, more likely to go for comfort care. So yeah, and not subtle effects. 10 or 15% difference from changing one, tweaking one word. So if you expanded that and imagined

Dr. John Lantos

conversations that varied lots of different ways you'd probably find even stronger.

Mixed presentation and audience boundary fragments

Okay, thank you very much.