 Good afternoon. On behalf of the McLean Center for Clinical Medical Ethics, the Department of Obstetrics and Gynecology, and the Bucksbaum Institute for Clinical Excellence, I'm very pleased to welcome you to the fifth lecture in our 2016-17 lecture series on reproductive ethics. brochures for the series are available outside. It's my pleasure to welcome our speaker today, Dr. Steven Brown. Dr. Brown is a pediatric radiologist at Boston Children's Hospital who specializes in prenatal and pediatric body imaging. Dr. Brown's work explores professional norms and ethical values that underlie clinical decision-making and communication while using advanced diagnostic and therapeutic technologies. Dr. Brown's projects have included a national survey of prenatal care providers' attitudes about pregnancy management in the setting of various fetal and maternal conditions and another study of the development of communication skills for prenatal care providers and radiologists. Dr. Brown is a graduate of the University of Pennsylvania School of Medicine, completed a residency in diagnostic radiology at Massachusetts General Hospital and fellowships in pediatrics radiology and pediatric interventional radiology at Boston Children's. Dr. Brown completed a fellowship in medical ethics at the Harvard Medical School. He's a longstanding member of the Boston Children's Hospital Ethics Advisory Committee and also a faculty member in the Harvard Center for Bioethics and in the Office of Ethics at the Boston Children's Hospital. Dr. Brown's talk today is entitled, as you can see behind me, ethical tensions between maternal fetal medicine and pediatrics implications for prenatal counseling. Please join me in giving a warm welcome to Dr. Steven Brown. Thank you very much. It's really great to be here. Thank you, Julie and Dr. Siegler, for the invitation. And I just want to say how honored I am to be here for many reasons. But perhaps first and foremost is because of how much this particular center has informed my own thinking on the issues I'll be discussing. And hopefully over the course of the lecture, you'll see some of the intersections of our work. So I wanted to start just by saying that I have no financial disclosures to make, but I do want to say from the outset that I am white, a male, I'm Jewish, I'm between 40 and 60 years of age, I'm married, I live in the Northeast, I'm moderately liberal, but I'm politically unaligned. I work at a freestanding independent pediatric center and it's an academic practice. And as all of you very well know, all of these factors may influence my interpretation of the facts as much potentially as any financial disclosures that I might have. So the objectives for today are to discuss how obstetrics-based and pediatrics-based specialist attitudes towards pregnancy management may reflect the interplay of clinical experiences and ethical values. And this is becoming of increasing importance as more counseling and diagnostic work for pregnancies in which the fetus has some congenital diagnosis or prenatal diagnosis. More of that is going into the domain of pediatrics, whereas in previous years, 10 or 15 years ago, it was more exclusively the domain of obstetrics. And but I want to place these differences, and I'm going to place a lot of emphasis on putting these differences within the broader context of the portals for bias and practice variation that exist in prenatal counseling. Because I don't think we can look at these professional orientation differences in isolation, but rather any policy implications ought to be considered within the broader context. And so what are, what kind of world is Crystal entering here? What are the portals to bias and practice variation that she's going to encounter? And I very much look forward to hearing what you have to say during the discussion phase of this. But let's start by saying, well, the first thing is that she is entering a world of rapidly evolving technologies, prenatal diagnosis and therapy. Many of you know that the conversations that we're having around prenatal diagnosis, for example, around Down syndrome are very different now than they were even five years ago or 10 years ago. And certainly the conversations around prenatal surgery and therapeutic options are changing in particular for this particular entity, spina bifida. Now no long, it used to be a relatively binary decision of whether to continue the pregnancy and have surgery postnatally or discontinue the surgery. Some people would put in adoption as a potential option also. But now, in many centers, the possibility for prenatal surgery is on the table. And hang on to your hats because as Diana Bianchi, who is now the director of the National Institutes for Child Health and Human Development, has suggested here, we are just in the early phases of what we're going to potentially be seeing in terms of the therapeutic and diagnostic options for prenatal and for the fetus. All right, so she's entering in this rapidly evolving technologically evolving world. And she's entering into a world of very morally controversial terrain. And as this group knows in such terrain, in particular reproductive decision making, there are variable provider, self-perceived obligations to disclose information or make certain referrals or to counsel directly or non-directively. We know, and again, the group here has taught us a lot about this, is that the counseling and the concern is that outcomes ultimately will reflect not just the facts, but our interpretation of the facts as filtered through our values. And of course, there are important provider variables for how these facts are interpreted, including age, gender, religion, political ideology. And one of the questions that our group has asked is, to what degree does professional orientation, the difference between, say, the perspectives of a pediatrics-based specialist or an obstetrics-based specialist, to what degree should that be included amongst these important variables? Now, some of you may be familiar with the argument or the discussions around hypoplastic left heart syndrome, which is a very interesting example of how values and facts interplay. For example, in hypoplastic left heart syndrome, as a technology has improved, should palliative care be considered an option that is offered to patients in that setting? And similarly, we are seeing analogous discussions in which the interplay of values and facts is important with swinebifida, myelin, meningocial repair. So here is some of the data. In 2011, a randomized, controlled trial concluded of a three-center trial of prenatal, open, intrauterine, myelin meningocial repair versus postnatal, and basically found that there was a half the rate of the shunt requirement, and twice the rate of being able to walk independently at 30 months. So some important benefits from the surgery. Not all babies are helped by the surgery, but many are. Of course, this comes with significant maternal morbidities, coru and the adex separation. And this just actually came out online recently, the more recent data, not in significant rates of coru and the adex separation, pulmonary edema, oligohydramnios, placenta, upruptions, spontaneous membrane ruptures, maternal transfusions, premature deliveries, respiratory distress syndrome. There is about a 3% perinatal death rate, which in the original data was not different from prenatal to postnatal, but in CHOP's post-moms data has shown about a 6% perinatal rate, so as we get past the trial, there are things may change over time within terms of the outcomes. The surgery is associated with a significant rate of either very significant thinning or even dehiscence at the historotomy site. The surgery itself, to my understanding, involves a abdominal laparotomy, a low abdominal laparotomy, with then a exposure of the uterus and a uterine incision, either a fundal or posterior uterine incision. The fetus is exposed, the defect is repaired, and then with all things occur, as is hoped for, delivery is by repeat surgery at 37 weeks, in which they go through the same laparotomy, but they don't go through the same incision in the uterus. They go through a low incision in the uterus. So that's two incisions in the uterus, two surgeries, for each of these cases. So how are people, and then all patients, require cesarean deliveries for any future pregnancy? So how do we talk about this? Well, we have this set of facts. What about the values behind them? This is how the Children's Hospital of Philadelphia, at least in 2014, was describing this on their website, saying this is not a cure, but this trial demonstrates scientifically that we can now offer fetal surgery as a standard of care for spina bifida. And the Europeans, this is the European group that does a lot of these surgeries. The conclusion derived from all data existing today is that maternal fetal surgery, although not a cure and not free of risk, represents a novel standard of care for select mothers and their fetuses suffering from one of the most ruinous non-lethal congenital conditions. So these are some of the folks involved with the surgery. This was a Cochrane review, which basically said, there is insufficient evidence to recommend drawing firm conclusions on the benefits of harms of prenatal care as an intervention for fetuses with spina bifida. So a different take, potentially a more objective take, but there was only one study, and they reviewed that study, and this is what they determined. So now this is a pediatric neurosurgeon from England who, I believe, has passed away. They're writing in 2000, so well before this surgery, these surgical outcomes, well before the trial even commenced. And she wrote that this intrauterine surgery ought not be considered a standard of care until it's risk-free, both for the fetus and the mother, and that the improvement in order for it to be considered a standard of care ought to be dramatic, VP shows unnecessary, brain development normalized, a normal bowel and bladder function, normal sexual function in men, and walking without or only with minimal bleeding. And that's kind of a far distance from where the outcomes currently are. And this is a group of parents of children with myeloma and meningocereal who are asked, again, pre-mom's trial study, the management of myeloma and meningocereal trial, several years before it, what outcomes would be necessary for them to make a recommendation of intrauterine surgery, say, to their friends, and they would said the VP shunt of 12%, rather than the 40%. Wheelchair use rate of 8%, incontinence rate of 5%. So here we are seeing a very interesting example of where we have a set of facts and we have a set of values around those facts and different interpretations of what should be considered, say, a standard of care, not unlike, should palliative care be a standard of care, say, for hypoplastic left heart syndrome. And it's interesting, by the way, that more recently, before giving this talk, I checked the CHOP website again, and they've changed their language somewhat. They say, fetal surgery for spina bifid is not a cure, but studies show that prenatal care can offer significantly better results than traditional postnatal repair, so perhaps not casting it a standard of care any longer. And there is some acknowledgment in the most recent paper on the mom's outcomes that we still have new centers coming on board, and we don't know what those results are going to be. Selection criteria are variable around the country, and we don't know what's going to happen as selection criteria change, or different at different centers. So considerable variability, potentially, in outcome. And hypoplastic left heart syndrome, as we decided, as we discussed, is an interesting example of the interplay of facts and values. And it's also, hypoplastic left heart syndrome gives us, has been studied, and it gives a very interesting picture into the practice variation that occurs in prenatal and congenital conditions around the counseling. And so this is a study of about 750 pediatric cardiologists and surgeons who self-reported that they, about 36%, discussed all the options with patients when the condition is diagnosed prenatally. So the options, including pregnancy termination, continuation of the pregnancy with palliative care, and then stage palliative surgery and heart transplants. 62% of them recommended palliative surgery or cardiac transplantation. Interestingly, if they themselves were faced with the prenatal diagnosis personally, and if it was a pregnancy that affected them directly, or their partners, a 24% would choose palliative care or palliative surgery, only 0.6% cardiac transplantation and almost 50% pregnancy termination or palliative care. So what are some of the factors here explaining some of the difference that we're seeing and what is recommended and what people would do for themselves? Well, certainly patient factors can be an important component of this. There may be patients who are presenting to these centers who don't wanna hear about elect determination, they don't wanna hear about palliative care, they wanna hear about what can be done for their baby. Or the physicians may perceive whether they know or not that this is why the patients are coming to them. But it may also be that they're an important provider and institutional interests that are somehow driving the recommendations in a way that leads recommendations to be made in a way that's different from what people would choose personally. Interestingly, a study by Alex Kahn and the author of this original, of this study showed that looking at physicians' personal preferences about what they would do over the time period, from 1999 to 2007, they did one, an early study and a late study, they found that there was little change in physicians' personal preferences, even though the outcomes for hypoplastic left heart syndrome improved over this time period, physicians' personal preferences about what they would do for themselves did not change, suggesting somewhat of a disassociation between the objective outcomes and provider values around the set of facts and outcomes. All right, now, so we have a situation where Crystal is entering a landscape of morally controversial terrain, lots of potential provider attitude differences. And this is all now superimposed upon a significantly evolving landscape for fetal care where an increasing model of care is where the care is targeted and oriented toward diagnosis specifically and therapies targeted specifically to the fetus. And this is the North American Fetal Therapy Network in 2010 and this is the same map in 2014. And one can see that this is a rather significant shift. In fact, the shift has been so dramatic that Detroit, which was previously south of Boston and Providence, is now north of Boston and Providence. So this is a very dramatic shift. But one can see, one can imagine that of all these centers that there's probably a significant degree of heterogeneity in the practice models. Some work has been done, we have done some work and Doug DeCamo's group has done some work about demonstrating very differences in available technologies, services provided. And one can imagine that the management strategies may be different, referral patterns may be different, financial models may be different. So lots of heterogeneity in the practices and this is not dissimilar to say the heterogeneity in practice that we see in perinatal care around the treatment and management of periviable newborns where we've seen significant differences in providers' attitudes about both clinical and ethical matters, what gestational age is appropriate to commence with or initiate treatment, what gestational age is something clearly beneficial or clearly not beneficial or futile. And we've seen in perinatal care significant differences in management strategies among centers, in available technologies among centers and the concern has been raised by people like John Lantos and Bill Meadow that there's been demonstrated to be significant outcome differences amongst all of these centers. And the question is to what degree are these institutional and provider factors influencing patients' decisions and outcomes in a way that may be undue in a way that the patients and even the providers may not be aware. And so the concern is that the analogy is close enough that there's a compelling reason to suggest that this may be happening in the fetal care landscape. And of course, one of the more interesting changes over time has been the shift of more and more pediatric specialists involved in the diagnosis, counseling and management of prenatal-league diagnosed fetal conditions. And this has happened over time and one of the more interesting events or developments is that you now have freestanding children's hospitals which are involved in this enterprise. And it's interesting to see how heterogeneous these models are. So, you know, this was previously the domain of obstetrics-based maternal fetal medicine specialists and now we have it moving into pediatric centers. And the centers are really very interesting and there are differences. So Children's Hospital of Philadelphia was the first freestanding pediatric center to house services for full services for prenatal diagnosis, counseling and treatment. It is a freestanding hospital. It houses, it's a very impressive unit that where there's a lot of counseling and diagnosis done. There's also surgery done. It was one of the centers where the mom's trial was performed. They have the entire apparatus for the surgery as well as for the post-surgical care of the pregnant woman and for the fetus are all housed within the pediatric's institution. The next one to open up is Boston Children's Hospital Advanced Fetal Care Center in 2000, so CHOP is in the mid-90s. They open up the center. Boston is a very different model. Very few intrauterine surgeries are performed at Boston Children's Hospital. They don't have deliveries within the hospital. There are some intracartiac interventions, percutaneous intracartiac interventions done at Boston Children's Hospital, probably the largest experience in the world. But those interventions are done elsewhere at the hospital joining the Brigham Women's Hospital, which joins the Children's Hospital. So the deliveries are done outside much of the counseling. So it's really evolved into a counseling, a significant center for counseling and diagnosis, but not for treatment itself. But still a lot of the patients that were coming in ultimately will become Children's Hospital's patients once they're delivered. The next center to open up was Children's Hospital of Cincinnati. Also, the Fetal Care Center of Cincinnati, housed in the Children's Hospital of Cincinnati, also a very impressive facility, again, which houses all of the apparatus, for say, open intrauterine surgery within its confines. It's a different delivery model in that it is the Fetal Care Center of Cincinnati is a joint venture of the Children's Hospital of Cincinnati, as well as the Good Samaritan Hospital and the University of Cincinnati Hospital. So Good Samaritan is part of the tri-health system, is a faith-based institution, which does not perform elective terminations for congenital fetal conditions. So one wonders what happens when you have a faith-based institution referring into a fetal care center that does surgeries for some of these conditions, or in which, regardless of whether you do the surgeries, the patients will still be funneled into their neonatal intensive care units in their surgical enterprise once the babies are born. It also turns out the University of Cincinnati does not perform elective terminations for congenital fetal conditions. So now you have two centers referring into the University of Cincinnati, referring into a fetal care center. Neither of those centers performs elective terminations. How does that affect decision-making for the pregnant woman? We don't know, it's an open question. I think it's a legitimate and reasonable question to ask, but we don't have outcomes to address it. Texas Children's Hospital is another freestanding enterprise which houses a lot of the apparatus for these services. Texas Children's Hospital itself is a very interesting model, a major pediatric center that now has spent a very large amount of money to purchase and control ultimately obstetric services and maternal fetal medicine services. So it has the Texas Children's Hospital Women's Pavilion, has a full service obstetrics and gynecology unit. They even have a unit for, they have a menopause center. So a menopause center centered within a pediatrics kind of institution and a novel idea. But you also have a series of impressive network of maternal fetal medicine, Texas Children's Hospital maternal fetal medicine units all referring into the hospital. And you have a health plan, the Texas Children's Hospital health plan, which is, I don't know how many people or how many families are covered by it, but it covers certain services, it doesn't cover other services. So one wonders whether or not all these different models affect decision making in some ways that the patient like Crystal or others coming in may have difficulty navigating. But there is this fundamental, and now that we do have more pediatrics specialists, pediatric surgeons, cardiologists, neurosurgeons, neurodevelopmental specialists, neonatologists, orthopedic surgeons, et cetera, is there going to be a difference between the worldview, is there a difference in the worldview of these pediatric specialists compared to the obstetric specialists that could potentially affect counseling and ultimately outcomes? And there are a number of different ways in which pediatric specialists and obstetric specialists could differ. They may have different conceptions of how conditions behave, about the risks and the perceived risks, perceived benefits and perceived burdens of any potential procedures or surgeries or decisions prenatally and postnatally, they may differ in who should provide counseling. A pediatric specialist may say, it may be hard for them to say, well, how can an obstetric specialist provide really full counseling about a condition like Down syndrome or spina bifida? I'm a neurodevelopmental pediatrician. I've worked with these families throughout the course of their entire lives. I know what these families go through. I know what the condition entails along a great spectrum and obstetricians just don't have that vantage point. The obstetricians on the other hand may say, I'm a very astute reader of the literature. I can interpret the data as well as anybody. And in fact, I may be more like the Cochrane review and provide perhaps a more objective review and which may balance out in the end whether or not I should provide the counseling versus a referral. And people may differ on when the referral ought to be made. Should a referral be offered before any decisions are made, when the diagnosis is made, but before any decisions or only after any decisions are made? What information is to be discussed? This is an analogous question in perinatal medicine where there are significant differences that exist among practitioners over what specific information should be discussed. Most practitioners will say, well, sure, yes, we ought to discuss the respiratory distress syndrome and we should discuss the probability or the possibility of intraventricular hemorrhage or what that means. But fewer may opt to discuss the retinopathy of prematurity or the long-term neurodevelopmental outcomes and even fewer may want to discuss or feel that it's important to discuss what are the financial or emotional burdens on a family of raising children who are affected. So similarly, maternal fetal medicine specialists and pediatric specialists may have similar differences and one information should be part of the perinatal counseling process. But most importantly, and this is where my own, this is where I came into this area of inquiry is because I worked as a imager both in a maternal fetal medicine center and also in a pediatric center that was doing a lot of diagnosis and counseling for pregnant women. And you learn over time that the experiences, the lived experiences of pediatric specialists and of obstetric specialists are very different. Very different experiences with the spectrum of experiences during the reproductive years and before and after very different experiences with disability, with long-term congenital conditions. And ultimately, I think it's reasonable to just suggest that these experiences culminate or result in lived values, differences in their lived values. And this is from Arthur Kleinman, who is a medical anthropologist at Harvard who wrote, lived values, the actual practices and engagement of what really mattered in a particular place and time amongst vexed patients and families and clinicians. And there's a significant difference just on its face of the lived experiences and lived values of obstetric specialists and pediatric specialists over time, these lived experiences are processed emotionally and ultimately can lead to different values and emanate in values that diverge. Now, so what are some of the different ethical perspectives that practitioners may differ on and there's the whole host of them. Pediatric specialists and obstetric space specialists may differ on their perceived obligations of themselves to the woman or to the fetus or to the child that's to be born or the future child. They may have different perceptions of obligations of that the pregnant woman has to the fetus or the future child. This can be articulated in a question of how much risk should a pregnant woman assume for how much benefit to the fetus or the future child. To what degree is the pregnant woman or responsible for the well-being of the child? Is there a difference between being responsible for well-being and assuming risk? If we're talking about crystal in particular, the question becomes if for whatever, if the decision is made to continue the pregnancy either because it emanates from her truly held values and preferences or because it emanates from all these other pressures and variables that may come to bear on her decision-making or some combination, once the decision is made for her to continue the pregnancy, does that incur upon her a obligation to consider the surgery strongly? There may be different perspectives on that. There may be very different perspectives on maternal autonomy. To what degree, how do we define maternal autonomy? Do we find it narrowly? Do we find it broadly? And what burdens may we impose upon a pregnant woman's liberty interests as an extension of how we feel about the autonomy? And then there's a consideration, there may be different perspectives on the psychosocial and political vulnerabilities of pregnant women. Many are quite aware of these very significant pressures that society places on pregnant women. There's very significant issues of class and gender and race inequalities and other pressures that put significantly constrict a woman's autonomy and of such a space specialist may be more sensitive to that from their experiences. On the other hand, those who are in the world where they're caring for and advocating for patients with certain disabilities and impairments may see the enterprise of prenatal diagnosis as being discriminatory towards those who are living with current conditions like Down syndrome. And so they may feel obligated in some way to try to advocate for those individuals even in the form of prenatal counseling. There may be differences in the ethical appropriateness of certain management options. Some people may feel that elective termination simply is not an appropriate reason, is not an appropriate option. Others may say, given the current set of factors as I see them, prenatal surgery is just not an appropriate option. The obstetric space specialist and pediatric space specialist may operate under different normative frameworks within their institutions. Pediatric specialists, many of the institutions operate under the using the best interests standard. So the pediatric specialists may be inculcated with in the ethos of the culture where the best interest standard is preeminent or predominant so that with that standard loving, well-informed, reasonable parents are given significant deference in the decision making or to make decisions that they perceive to be in the best interests of their child, but up to a point where providers may determine, not lightly but may determine that what the parents are requesting or the decision they've been made is the harms are substantially disproportionate to any potential benefit or it's simply unreasonable or it's not in the best interests of the child, however you might define those. Others may be steeped in the culture of principles-based culture. This is a lot of the literature we've seen, we've seen the turvenac maculic model penetrate a lot of the literature and there may be some of the services where there's a lot of fetal surgery done may work on the basis of this principles-based approach to surgical decision-making. Others may take a more, a different attack, attack espouse say by people like Annie Lierly and Maggie Little, Mary Mulwald, Lisa Harris in which sees flaws in the principles-based approach which sees a more appropriate approach to be a relational approach or a quality-based approach where we have to think of the relationship between the, rather than thinking of the conflicts and the interests, we're interested between the fetus and the pregnant woman may diverge, we need to think more about where they're intertwined, interdependent, where they establish an important intimacy. So people may be operating under these different frameworks and then finally there may be a just a simple, not a simple, actually rather complex, dissonance or tension that occurs for various specialists when they're discussing certain procedures or decisions. So someone who is really concertedly working for the therapeutic benefit of a fetus, whether it's in the delivery room or whether it's intrauterine, may have experienced significant cognitive dissonance, emotional dissonance, ethical tension, discussing elective termination. Someone who has worked with pregnant women who has seen the vulnerabilities that they did and the pressures that are placed on them, who has seen them struggle with the various challenges of conception and pregnancy and all the various contingencies, just may see the fetal surgery, the prenatal surgery as it just cannot, it creates too much dissonance for them to discuss it in good faith. So this is kind of the theory behind it. And so our group has done a number of different, put out a number of different papers in which we've approached the subject. The first way we approached the subject was to look at the policy differences, the then existing policy differences of the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists, their differences of their positions on the ethics of maternal fetal interventions. And this paper came out in 2006 that I wrote with Bob Trug and Jeff Ecker and Judy Johnson as we compared the then existing policies. And there were subtle differences. And one of them was around judicial intervention from maternal refusal of recommended treatment. The American Academy of Pediatrics statement, which was put out in 1999 said that if a physician feels strongly that further intervention is necessary, judicial authorization is absolutely required. However, given the potential adverse consequences of forced medical or surgical procedures, court intervention should be seen only as a last resort. So it's not something they take lightly, it's something they would do with a feel of heavy burden and feel queasiness doing it. But nonetheless, they do leave room for overriding a maternal refusal of a recommended treatment. The then existing ACOG document said that court authorized intervention against the wishes of a pregnant woman is rarely ever acceptable, even in the presence of court or authorizing intervention, the use of physical force against a resistant, competent, patient woman is not justified. So a difference, a subtle difference, but a real difference. And if you look at the documents themselves, there was a difference in how strongly they held to maternal autonomy. And there was a difference in the risks that they thought pregnant women ought to assume. So the ACOG document did not talk about a woman's responsibility to assume risk for a pregnant woman. They said the woman has some responsibility for the well-being of the fetus. Whereas the AAP document wasn't well-being, it was they have some responsibility to assume some degree of risk. So a difference in that, and then there was also a difference in acknowledgement of the psychosocial vulnerabilities of pregnant women, which the AAP document at the time did not discuss at all, and which the ACOG document discussed at length. And so these differences ultimately played out to slightly different policies. Ultimately, the two groups came together in 2011 and wrote a document which was revised and said even the strongest evidence of fetal benefit would not be sufficient ethically to ever override a pregnant woman's decision to forego fetal treatment. A very strong language in which both groups came together. But originally there were differences potentially relating to worldviews and some of these ethical perspectives that were discussed. Now, so how does our group want to know how does this play out on the level of the individual practitioner? And in order to do this, we did a survey of 100 of, and the respondents are 192 maternal fetal medicine specialists and 242 what we defined as fetal care pediatric specialists, pediatric specialists who are involved with the counseling diagnosis and or treatment of prenatally diagnosed fetal conditions. Surgeons, cardiologists, neonatologists, radiologists, orthopedic surgeons, et cetera. And so this was conducted in 2009, 2010. It was completed in 2010. And one of the things I wanted to point out is among these two samples, there were no differences for race, ethnicity, income, religious affiliation, political affiliation, religiosity, political ideology, ownership with a religious affiliation. There are experiences, personal experiences with disability or with themselves or the family. And I was also wondering to point out that as we look at these differences, maternal fetal medicine specialists within and outside of fetal care specialists were uniform as opposed to different in their attitudes. Okay, so with regard to judicial authorization we said, do you agree, do you agree when, if ever, is it appropriate to seek judicial authorization to compel a pregnant woman's adherence when she has refused the recommendation? We gave a few different examples. Maternal refusal of the AZT therapy to prevent perinatal HIV transmission, maternal refusal of percutaneous retransfusion for fetal anemia, secondary RHIC immunization at 25 weeks. These were examples that were cited in the AAP document. And as it turns out that for both of these examples the pediatric specialists were significantly more likely to agree that seeking judicial authorization was appropriate. Now, it's important to note that it's not, you know, it's not, there are still maternal fetal medicine specialists who agreed with this statement but significant differences. Now, how might this play out in current and contemporary times? Well, it's, no one's going to be seeking judicial authorization to force a pregnant woman to undergo, you know, fetal surgery, maternal fetal surgery, but it may mean that pediatric specialists have a higher degree of expectation for the recommendation that the woman will follow the recommendations that are made to them. There may be a greater degree of directiveness involved. We don't know. These are, these are still, some of these are still empirically open questions. We also asked specifically about the attitudes about congenital fetal conditions. And we asked about three conditions. Down syndrome, congenital diaphragmatic hernia and spina bifida. We asked them what was the importance of certain information. In the setting of a couple of 26, we're both 26 years old, married, coming and presenting for consultation around a fetus at 19 weeks, diagnosed with one of these. What's the importance of information? When should the pediatric consultation be offered? What would their support in their role as a professional? To what degree would they support a decision by the couple to terminate, to electively terminate the pregnancy and then to estimate their outcomes, estimate their termination rates? And this is a crude measure of outcomes. It's the only one we use. So, clinical characteristics of the condition, not really controversial. The majority of all felt that it was important to convey the clinical characteristics of the condition. This is the percent who ranked it as of importance. Pregnancy termination, there was a significant difference. The maternal fetal medicine specialists were significantly more likely to state that it was important for them to discuss elective termination. Again, it's not deeply polarized. There were, in fact, a lot of fetal care pediatric specialists who felt it was also important to convey information about that. Some of the pediatric specialists who I've spoken to about these data will say, look, I'm a pediatric specialist. It's not my job. My job is to talk about the heart condition. My job is not to talk about elective termination. On the other hand, if two floors away, you have an adolescent medicine clinic where part of the counseling process for pregnancies for, say, adolescents involves talking about pregnancy termination or the potential option for it or the services available for it, then to talk about it in the one setting of a woman who is pregnant at 14 years old or 15 years old, we're not at least discussed that are open as an option and a 26-year-old woman who is pregnant with a fetus that has a certain condition that may reflect some degree of bias within the institution. All right, personal contact. How important is it to offer personal contact with individuals or families with a condition? We see that for Down syndrome congenital diaphragmatic hernia and spina bifida, the pediatric specialists were more likely than maternal fetal medicine specialists because it was important, but I do want to point out that these groups are not monolithic by any means. And so how I interpret these data is not so much about the difference between pediatrics and maternal fetal medicine specialists, but rather there's a lot of variability around this particular question. And if a woman goes to one center, she may get offered that contact. If she goes to another center, she may not get offered that contact. What degree does that contact make a difference? And it may be just random where she winds up going in terms of whether or not she gets this counseling. Financial costs and treatment of subsequent and financial costs and treatment of subsequent care of a child and those significant differences between the groups for either, for any of these conditions. But again, neither group is monolithic and one can imagine that as crystal or another patient one prior rider to another or one center to another, we're going to see a fair amount of variability superimposed upon the heterogeneity that we've already seen. Timing of pediatric specialists, basically we asked prior to the decision to continue or discontinue a pregnancy, we asked it for all of them. At what point should it be offered? Can general diaphragm, manicurney and spinal bifida? Similar, the majority, but there was a significant difference between pediatric specialists and the maternal fetal medicine specialists. What does this mean? Why is this? Well, it may be that patients coming for the patients in which the fetus is diagnosed with Down syndrome may not go to the pediatric specialist's office. They may not want the referral, whereas these patients might want the referral. But there may be some kind of difference that is perceived on the part of the specialist regarding how these should be managed or whether or not it's appropriate to have a pediatric specialist involved. Support for pregnancy termination in their role, to what degree would you support the decision that's made? Significant difference between the two groups along for all of the conditions. Again, the groups are not monolithic, suggesting that there's variability within the groups. So one of the big points here is that inter-provider intra-specialty differences may be as important as inter-group. Patient outcomes, we only ask what are your estimated termination rates? There's only a significant difference after a multivariate analysis for Down syndrome, which the maternal fetal medicine specialist reported a two to three times greater termination rate. This may relate to patient preferences and who was referred for what reason, but it could also represent some degree of bias along the provider specialty distinction. Pediatric specialists, you know, the question is that their understanding of this particular, is it their understanding of these particular conditions or is it more than that in terms of their values around pregnancy termination? We found that for the presence of a fetal abnormality, the effects of a child with disability on marital and family relationships, costs of healthcare for the future child along all of these lines, the maternal fetal medicine specialists were significantly more likely to disagree that these were not appropriate reasons to terminate pregnancies. So there's more than just their perceptions of the conditions themselves. There is a distinction over between the two groups in terms of what are appropriate reasons to continue or discontinue a pregnancy. All right, intrauterine treatment. Let's see, I'm about 55 minutes into five more minutes. Okay, all right. I'll just summarize the data we asked about intrauterine treatment before the mom's trial, and we found that we asked them about, to imagine a hypothetical procedure in which the clinical profile was very close to what the actual profile turned out to be for prenatal surgery for a non-lethal condition. And what I wanted to point out is we said, well, if the patient has a severe non-lethal disability, a severe non-lethal condition that will result in a severe disability, and the open intrauterine surgery will result in a moderate disability or a mild disability, would you recommend the surgery? And for both outcome of moderate or mild, we separated it definitely, would recommend or would not recommend, we can see that for both of these, whether it's moderate or mild, there's no difference between the two groups, but a significant degree of difference within amongst practitioners as a whole. Meaning that there's probably a lot of variable counseling potentially around this procedure or hypothetical procedure that if Crystal goes to one physician or another, it may make a significant difference in whether or not they're given a recommendation about the surgery. All right, so what kind of new world is Crystal entering? It's a complex world. There are numerous portals to practice to bias and practice variation. There's been very morally controversial terrain, a lot of unresolved clinical and ethical questions, very heterogeneous practice models, and then we have counseling providers with disparate worldviews, and I think where our data fit in is that just professional orientation may be an important variable just as age, gender, religiosity, et cetera, and I think so going forward for those doing this sort of work is important to keep in mind and is important to keep in mind for policy differences. And the concern is as with, say, counseling around the threshold of liability, that the locus of care may significantly influence the information options, recommendations, or directiveness, which is used in the counseling. And then, of course, there's, I think, compelling reason to be concerned that the decisions that patients are making and the outcomes may not necessarily reflect their own preferences and values as much as all of these very, very significant provider interests and institutional factors. With that, I will say thank you very much. I would love to hear your take on the various policy considerations and I will withhold mine for the moment and I want to say how much I appreciate the opportunity to talk to you today. Thank you very much. Dr. Brown's paper is opening for comments or questions. Yes, please. Thank you, Dr. Brown. That was very enlightening. What's funny, last Friday I have a patient exactly like the lady you presented. She's 20 weeks. She referred to me from somewhere in the north side. She had the same story, meningitis, and she had the same changes in the brain. And the question, and we did MRI on her and proved the same thing. And the difficulty was how to convince both the father and the husband and the wife. How do you approach that and they have divergent opinions on how to move? And I just sent out to the neurosurgeon and I didn't hear from them since then. So the question is... The question, what do you do when the father wants something and the husband wants something and the mother wants something? So they wanted different things. They wanted different things. They're not agreeing on your recommendation or perceived recommendation. Who wanted which client? Well, the mother was reluctant to go through termination or interruption or pregnancy. And the father was just hedging to it. Well, I fell from 10 floors and I have spinal injury but I'm now fine and this kid is gonna be fine. So he doesn't want the child to go through difficulties but the mother's not really sold about that. And I was totally... I'm saying, look guys, my job is to have mothers have babies so I could live as an obstetrician. But it was very, very difficult on me. It was very... That weekend after that I could not really sleep. What is the real answer for a condition like this? There's a diversion. Well, first I think... Well, two responses. I think it would be hard to... I think you wanted your best to get them to work together to come to a mutual solution in which the woman does not feel that she's been pressured into having elective termination. I think that's probably, to me, that's really... That's probably the worst outcome is where you have a woman who's feel that she's been pressured to have this termination. But, you know, his interests I think are important compelling here too. I think trying to get them to work together, trying to have them... Do they have a chaplain that they can work with? Do they have a social worker that they can work with? Do they have a psychologist that they can work with? I don't know what the time pressure... Obviously, there's a lot of time pressure issues, but do they have people that they can work with who know them to try and come to some mutually satisfactory... But I think that there are models for... This is a rare case, but you have much more common models. For example, a couple who has three children in which there is an unintended pregnancy and there's a tension between the two in terms of what to do with that pregnancy. There ought to be already intact mechanisms to help couples adjudicate that or come to some kind of mutually satisfactory decision around that. I think those mechanisms... Just tell Mamoud to be quiet. Stop talking, Mamoud. It makes it easier. So here's a different question. It's on a different level. I'd like to talk... Thank you very much. You talk a lot, in a lot of different data, about provider variability, both across fields and even within a field. Across fields. So that OBS versus pediatricians and then even within the field, within OBS and within pediatricians. And so it's a two-part question. One is, do you think that there's anything we can do about that? But the more interesting question to me is, do you want to do anything different about that? Is it to make a sort of extreme or inflammatory statement, sort of believe that I would do? It's inevitable to have differences among providers, and that's what parents are going to perceive when they come to different caretakers or experience when they come to different caretakers. And maybe that's not such a bad thing. I don't disagree with that. I think that that's an important point. I don't want to advocate that the recommendations be standardized, that everybody makes the same recommendations. I think that that would be inappropriate. And I don't want to suggest that all of the services should be, everybody should have the same service. I think that part of the solution ought to be that there should be standardized information. Regardless of the recommendations that are made, the information that's available is standardized and made available, not forced, not mandated, but made available. And within that standardized information, where there's variability within counseling, where there's information that not everybody thinks the same way about this, where the specific institution stands and why, and over time, some kind of enhanced process, a degree of transparency. But at your point as well, I wouldn't want to say this should be the recommendation for every patient and every provider. But you know that the quality of information is just barely a starting point. That you could provide equal information and yet the outcomes in this situation, or we talked earlier, prostate cancer, or choices about transplantation could vary enormously, even when all the information was in front of the patient, who can't process or understand the complexities of the information. It's like when the patient comes in having googled their three conditions, which are very difficult to manage, even for an expert, and deciding that they know exactly how these three should be intertwined, the information alone is not sufficient. And I agree, and I think part of the enhanced consent process would optimally involve independent, that is patient advocates, or those who can assist with decision making who are independent of the institution or the providers involved. I think if over time a cohort of independent physician, excuse me, this independent patient advocates could be cultivated that are independent of the institutions, I think that would be an important part of the process. I agree. Yeah, thanks for that talk. I enjoyed it. So I think one aspect you didn't get into much is the whole notion of the technological imperative that says that the mere availability of technology sort of encourages its use, and I think that's exemplified by people choosing to have the surgery when it's offered to them, but if you ask them separately, what would you need to do this surgery? They were much more rigorous that they would want the results to be a lot better than they actually are. And I think that's a force that really is important. So just the mere availability, and the question is, why does technology become more available? I think one of the things you showed was the whole, showing the variability of how it's being administered is that there is an economic incentive here, right? These are cost centers that it developed. You hinted at it in Texas. They've developed this machine that creates these surgeries, and they need to feed the machine. And so that is an important force that I think needs to be reckoned with when you're considering how people make choices. I agree, I agree. Yeah, yeah, yeah. Well, yeah, I'll come back to that. Yeah. Yeah. I'll come back to that. Terrific. Please, go ahead. We were talking about this before, and so what we're talking about, I think, overall is how secondary interests, secondary institutional and provider interests are holding sway over the primary interests of the patient and the best interests of the patient. And that is the definition of a conflict of interest. If you look at Dennis Thompson's 1993 New England Journal paper on conflicts of financial conflicts of interest, what he says is that, you know, this is all under the umbrella of non-financial conflicts of interest, even though it's financial conflicts of interest. What he said was that these other non-financial conflicts of interest are no less powerful or important as what we would define as financial conflicts of interest, but we can't contend with them because they're not as fungible, they're not as objective, and we can't deal with them in the same way as financial conflicts of interest which are more concrete, fungible, quantifiable. But I think in the 20 years that have come since that paper was put out, we have sufficiently compelling data about how some of these factors do influence decision-making that perhaps over the time there ought to be more of a conflation of these factors such that these competing interests, whether they emanate from ideological differences or heterogeneity differences in practice models ought to be treated in similar fashion as conflicts of interest, where disclosure becomes more important for all these differences. Thank you. Thank you for that presentation. This is in no way a critique of your work. You can only study, you know, several things at a time, but your focus, of course, was on provider values, and I don't think I ever heard you use the term patient values, and I want to interrogate your use of the term counseling. So you use the word counseling a lot, but it was coupled with the word recommendation. So I work some with counselors in abortion care, and I work with genetic counselors and others that, as a professional, focus have non-directive counseling as their, you know, North Star. Obviously physicians most many operate differently, and the end of their counseling sessions can be very directive. So it's a whole different counseling model, a directive counseling where there's a very firm recommendation made, and I thought that an underlying presumption in your work was the counseling was a directive counseling. So right there there's a big branch in a counseling type, which I don't disagree with necessarily in this circumstance, but I wonder what the role of the clinician is in eliciting patient values, and as we former McLean fellows were so well taught, the idea of like then tailoring your counseling to that patient's value set rather than presenting this mental information, providing your recommendation without that eliciting. And I'm interested in that split between elective termination and then if we're going to go forward with this pregnancy, there's still a whole host of decisions to be made. So I guess my question is, what's the role of patient values and what's your thoughts about the directive versus non-directive counseling in these phenomenally morally fraught and technologically uncertain questions in pregnancy? So first I mentioned patient values a few times, one in regard to the variability in counseling around hyperplastic left heart syndrome and then around why there was a difference in the counseling about Down syndrome and also in the outcomes. I did mention that patient values may be who decides to go to those physicians. My feeling about directive and non-directive counseling is that the field has largely been committed, genetic counseling for example, to value neutrality and non-directive counseling. Would you agree that that's true? Yeah, that's my impression. My concern is as we, as providers, hide behind our veil of neutrality that the biases that we come to the table with will emerge from behind that veil in ways that neither we nor the patients are aware in regard to how we frame the decisions, the order in which we frame options. There's the degree of body language or how we express a support for a certain decision. So I do have concerns that biases are emerging in ways that are not, that are powerful which we may not be aware of and I would be an advocate for over time training practitioners to begin to discuss their values with patients in a way. I believe that it can be done in a way that is effective, that is a shared conversation, a two-way conversation in which it can be done in hopefully non-judgmental ways. Just as we have spent enormous resources in training physicians to convey bad news, potentially we could put resources in the training people how to convey in a way that ultimately says, you know, Crystal, I've looked at, we've done a lot of talking and I've seen, you told me about your life and I've got to say it just doesn't make sense to me that you would go forward with this pregnancy. Or, you know, Crystal, I know you have an enormous number of challenges in your life. It seems unbearable, but I know you are a strong and resilient woman and I have to tell you, I'm very uncomfortable with the decision to discontinue a pregnancy. That's my own personal value and I think you can do it, but I know that there are other physicians who feel differently from me and if you want to pursue that path, you know, as your physician who cares deeply about you, I will, you know, make that referral or, you know, or even if I feel, you know, it doesn't seem to me that it seems like it doesn't make sense for you to continue the pregnancy. I will do what you need to get, you know, the resources for you to continue if that's what your desire is. Does that kind of, does that? Well, it's interesting. Yes, I mean, that's a rich answer. I think what people mean different things when they say counseling, that sounds to me like a true shared decision-making where I get a role in this decision. I think a classic counseling model would say it doesn't matter exactly what my values are, try to filter them or I'll share them with you, but it doesn't matter whether I think you should do XYZ, though I might reflect back, it sounds like you don't want to continue this pregnancy okay thing to do, that would be a value affirmation of the person versus saying, I don't think it makes sense for you because who cares what I think, I don't have to live with the decision. To me that's a true counseling model versus a shared, I get a say. But those are complex issues. They are, and you know, my main concern is to try to shift the balance of power so that it is the values of the patient and the preference of the patient ultimately that are able to prevail in the ultimate decision and outcome. Terrific. Thank you. Last question. Yes, we'll give you the mic. Earlier Dr. Meadow had said it's good. He thinks sometimes for the different physicians on the team to have different recommendations for what the patient should do. And my question is how is the fetal care center model different than the cancer center model where all the specialists come to the table, they each express their own bias, they make a decision and then present in front of the patient versus, you know, going to see the pediatric specialist say say this, going to see the obstetric specialist say say this and then the patient sort of comes out with, you know, one institution saying two different things. I don't know how the different hospitals handle that. Some probably do have the model where everybody comes together at the same time. Some don't. There may be some advantages to everybody coming together with a joint recommendation. But then the institutional interests potentially become very powerful in that setting. Whereas there may be an advantage to having different institutions involved in the counseling where you might more likely hear different viewpoints. Now hearing the different viewpoints, as you suggested, would say prostate cancer, you know, that could be incredibly difficult. But at least you're hearing the different opinions. You know there's different opinions out there. You know, this is a common issue with ethics committees and with care in the hospital that there's, you know, five different views around a patient decision around which, you know, the patient is never aware that there, but I think it would be validating sometimes for patients to know that there are all these different opinions about what their, what decisions are being and recommendations are being made. Thank you very much. We've got the problem. Thanks. Thank you very much. Thank you. We're going to say no. Thank you. Thank you.