 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 the director of children's mercy bioethics center at children's Mercy Hospital in Kansas City And it's a professor pediatrics at the University of Missouri Kansas City School of Medicine He's offered several books including do we still need doctors? Neil Neal ethics in the last physician Walker Percy and the moral life of medicine He's served as both the president of the American Society of Law Medicine and Ethics in the American Society of Bioethics in Humanities And John will be speaking about 22 weekers Boy, you look up tough act to follow in the dictionary and they've Dave Sheeter Myers picture 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 Maybe 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 Rest in peace Leonard. Yeah Also, let me just apologize. I'm a little jet lag. We just return from a tour through India Where we did three bioethics conferences with the team from children's mercy, but also on Gira Patel and Gira 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 lag. So this might be a little bit incoherent, but I will try my best. So 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 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 receive what they call the active treatment There were a few outliers at 23 weeks Every center offered treatment to some babies and some offered treatment to every baby But at 22 weeks five hospitals provided active treatment to no babies. They've apparently had a policy We just don't treat 22 weekers But seven hospitals offered active treatment to every 22 weaker and the rest the other 12 were Somewhere in the middle Turns out that hospital policies are the strongest predictor of survival for babies under 25 weeks in hospitals that treat more such babies save more such babies and hospitals that restrict treatment 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 percent survival for 22 weekers and 88 percent for 24 weekers and this is how they compare to the Vermont Oxford Network a large consortium of 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 anti-natal steroids something that the American College of Obstetrics and Gynecology does not recommend They have a standardized protocol that 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 Chet ventilator from the moment of birth which reduces barotrauma and leads to better neonatal 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 percent 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 So I know what you are thinking the 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 gestational age 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 survived do just as well or just as badly as the 25 weekers who survived There's some data from a big study in England 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 of the same rates of IVH Intraventricular hemorrhage bronchopulmonary Displasia and neurocognitive impairment as 23 24 weekers So if if the goal of treatment is to reduce the number of survivors with neurologic impairment to the only sensible policy would be to Cut off treatment at 26 or 28 weeks where they 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 percent survival and 20 percent of Survivors had severe disability versus a group that had 20 percent survival and 50 percent of the survivors had severe disability 20 percent of 90 is 18 50 percent 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 in the 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 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 five to six percent survival and among survivors Significant morbidity is universal 98 to a hundred percent 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 five percent So in that sense the ACOG statement was quoting a Factoid that you could take from this study, but the survival rate of babies who got active treatment was 23 percent And only 22 percent of babies got active treatment So if every baby got treated the overall survival rate would probably be somewhere closer to 20 percent 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 to how how many babies survive without impairment? 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 singleton survive unimpaired they break it down by boys whose moms didn't get steroids boys Mom's did girls with no steroids girls with steroids. There's three things to note here among 23 weekers There's a four-fold difference in unimpaired survival the girls are 18 percent 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 grammars 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 percent good outcomes Depends whether you consider a good outcome only among survivors or to put it another way Is it worth worse to have tried and failed then 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 pre-means Considered 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 give an oxygen in 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 Or another thought experiment babies born at 22 weeks and 500 gram gestation with Apgars of three and six Or an 84 year-old without an advanced directive comes to the ER diaphoretic shorter breath with chest pain and ST elevation Here are the survival rates for that 85 year-old Unadjusted survival rates about 15% to overall and as I pointed out here are the achievable survival rates for the 22 weaker while many people would say that CPR for that 84 year-old might not be the best thing I'm not aware of any policy 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 Jean Vieille 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 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 suggests that this was a study of physicians nurses parents of Children who had been extremely low-bate with birth weight babies in this study. They actually the 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 in continent with no activities 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% 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 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 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 hole 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 u.s. Today But if we ask parents many will want treatment and if we're asking them an offering treatment I think we have an obligation to put in place the kind of systems that would lead to good outcomes with treatment to Ask parents and have them request 22 weekers when the obstetricians don't give Antinatal 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 hope so 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 of 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 banks You norm John that was great Peter singer Jeff McMahon and more recently Dominic Wilkinson neo-natologist 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 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 praise Wilkinson's book, but maybe not every chapter of it. I'm interested in your thoughts about that What say that again 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 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? It's a great question. I can't I cannot answer except to speculate based on a visit that it was leadership within neonatology and an institutional culture in which collaboration between neonatology and and obstetrics had already existed and continued to exist, but how that came about John thank you I Wonder if you think there might be an analogy to spina bifida You know in the 70s. We had the Lorber camp Saying only treat the best of them And you had the MacLone 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 percent It seems to me this moving target and trying to believe your data is Part of the problem. I'm wondering what you think 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 my lumen ingesiel 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 offered 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, no discussion 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 So you had you know people saying we don't know that yeah We have to offer treatment and we have to study it and see whether that hypothesis is true That's that was my understanding If that's true then the analogy would be a good one. Yeah, right So everybody loves data and I hear you saying we're not getting data here because of these dichotomous policies and and I think the third elephant maybe in the room is disability ethics How health care professionals specifically have this and we see it over over again in ethics consultation This quality of life by us 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 anthrocycline 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 Good good point like Chrissy'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 case? And I think it was more 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 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 Good morning, Dr. Lantos You've done a remarkable work over the 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 five 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 How much in what way has that influenced or helped you to think about these things? For those of you who don't know Martha's my wife and And the grandmother of that preemie Personal experience is Shape shapes our views on almost everything and watching Anna and Mitch and Will go through that will was actually a twin and the other twins Sam died at one day So they offered treatment to both twins Outcomes were radically uncertain and We were blessed that will both survived and did very well He was left with what would be classified by the NIC HD 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 and Played soccer and is a pretty good pizza maker He has a little bit to learn on that count 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 Trump's 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 that like the health professionals One more. Oh, yeah, you're back Yeah, one more if there's time Getting back to Wilkinson If you had an a preemie if you had a predictor machine and you knew with a hundred percent certainty Yep, that in 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'm if I got that wrong if you Wound up and if you found out at age one two or three that the child had turned out that way So now that it is a hundred percent that the child is in a state where you think continued Survival is not in his or her interest particularly with more medical treatment If it were would it be appropriate to act in a way that would end that child's life at that point and if that were 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 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 They have been No, they have not in Belgium actually in Belgium. It's for children who have decisional capacity They're about to in the Netherlands 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 We'll 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 going to be severe impairment later in life And many parents choose not not to withhold or withdraw treatment I think the number of cases in which The scenario you describe would actually play out would be so minuscule with 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 Clinical example of the scenario you describe would be trisomy 13 or trisomy 18 where we have virtually a hundred percent accurate prediction that Kids are either going to 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-perlonging treatment and Again, all I'm arguing is that should be the paradigm for 22 weekers