 I'm gonna go ahead and get started. Hi, good afternoon. And on behalf of the McLean Center for Clinical Medical Ethics, the Bucksbaum Institute and the Department of OB-GYN, I'd like to welcome you to the eighth lecture in this 2016-17 series on reproductive ethics. It's my great pleasure to introduce Dr. Jeffrey Ecker. Dr. Ecker is a high-risk obstetrician and department chair at Mass General in the Department of OB-GYN. He's also a professor at the Harvard Medical School. Graduate of Princeton University and Harvard Medical School, he went on to complete residency at Boston's Brigham and Women's and fellowship in maternal fetal medicine and obstetric ultrasound at UCSF. Dr. Ecker has published widely on clinical and ethical issues in obstetrics and gynecology. He's co-directed a national survey funded through the Greenwall Foundation on obstetrics and pediatric specialist attitudes regarding pregnancy management. More recently, Dr. Ecker worked on an NIH-sponsored study looking at pregnancy experiences of women with physical disabilities. Just this past year, he received a Partners in Excellence Award for his academic scholarship and outstanding contributions at Mass General Hospital. Dr. Ecker has filled many leadership roles in the American College of Obstetricians and Gynecologists, including chairing the College's Ethics Committee and serving as chair of the Committee on Obstetric Practice. Dr. Ecker is a founding member of the Massachusetts Perinatal Quality Collaborative and serves on the Perinatal Advisory Committee of LeapFrog, a national quality measurement organization. Dr. Ecker's talk today is entitled Death and Pregnancy, a case for limited autonomy, question mark. And please join me in giving a warm welcome to Dr. Ecker. Thank you very much. Thank you all very much for the invitation and for coming to listen today, and I hope participate in a bit of a discussion. As you heard, I do these days hail from Boston, the city where Theo Epstein won his first World Series, I'll point out. I was glad the Red Sox went out early so I could unabashedly root for the Cubs along the way. I usually think of pregnancy as the start of life and today we're gonna think a little bit about it being a context for the end of life and that can be a little bit of a jarring disconnect, a disconnect that I'll argue makes many behave in funny and not perfectly ethical ways. My disclosures, you will tell, I have not been pregnant. You may not know by looking at you, me, but I have not had near death experience and had to make decisions like we're gonna talk about today. And I readily admit knowing some of the faces already in the audience that a lot of you know a lot more about ethics than I do. You have training, are training to be what I would call professional ethicists. I am not a card-carrying ethicist. Those who know me would tell you that I have actually no moral compass whatsoever. And so when someone like me winds up in front of someone like you, like all of you, what I wind up doing is telling stories. I think of myself, I've asked to describe last night at dinner, I was saying I'm more of a pragmatic ethicist. I think about the real-life consequences of some of the decisions that we make. So this is the first story that I'll tell. And some of you may be familiar with it. This is, there are two cases here that are real cases and this is one of them. The patient question was a 33-year-old mother of a 15-month-old and one night, cooking in the kitchen, she collapsed of what was eventually proven to be a massive pulmonary embolism. She was described initially as ethnic but alive in the EMTs, got there and transported her to the hospital, were very quickly and sadly, they recognized that she was brain dead. Not many 33-year-olds have had discussions about end-of-life and end-of-life wishes, but this individual and her partner, her husband, it turns out were EMTs. And so I thought actually quite a bunch about this and had decided that in cases like this, they would clearly want care withdrawn and happily the family who had arrived at the hospital at the time didn't have any disagreement, not that I think that their individual thoughts would have really influenced things here, but there was no contesting the patient's wishes. And so I mean, I'd ask, just with the facts that I presented to you here, who wouldn't agree to withdraw care in someone like this, right? You stated that she was being cleared of brain dead. Yes. So by what standards in the whole brain, I think that we've got some more, do you normally withdraw care if somebody's brain dead? They're dead. Well, we'll discuss that. So that's an interesting, I'm not gonna say twist, but an interesting fact in that case, but even more so if someone is brain dead, I don't think anyone would object to stopping whatever machines she was on. But the patient here was 14 weeks pregnant, as you've guessed from the title of my talk, and the hospital that she was brought to was a hospital in Texas. And Texas law is states, as I've written here, shown up on the slide here, that a person cannot withhold CPR or a certain other life sustaining treatment from a patient that's known to be pregnant. And this patient was known to be pregnant. And the hospital interpreted this to require that their staff continue to provide support. And the quote here is from one of the hospital administrators to provide support to protect the unborn child against the wishes of a decision maker who would terminate the child's life along with the mothers. This not surprisingly didn't sit well with the family and a lot of time in court ensued. Now I don't know how many of you in the audience practice obstetrics I do, but very briefly in one slide I'll just tell you that the notion that you can brain dead or not near death, keep an individual alive whose circumstances are dire, who is facing certain death without continued support. And for the purposes of the talk, I'm not sure what to call someone like this, but we'll ignore the distinction between brain death and what was going on here. You can do this. And there are certainly cases and case reports of individuals being maintained on support for weeks and months to reach a point at which a healthy viable child could be born. I've written here some of the thresholds that those who don't practice obstetrics may not be aware of for limits of viability. This patient was at 14 weeks. So really we're looking to gain 10 to 16, 18 weeks before you can have a notion of some healthy outcome and the chances of a healthy outcome depend on many things including the initial inciting event and the circumstances of the resuscitation, but also what happens as you're traversing this long interval of support. There were some initial arguments including the initial argument that you've recognized that this was not someone who was being kept alive, this was someone who was dead. Philosophically, quickly folks recognized and made the objection that this was a case of an individual or someone who had recently died being used solely as an incubator, really not respecting her wishes, but using her or her body or what had been her body as a means to the end. And of course pretty quickly, this made its way into newspapers, television, and commentary, there's a lot of commentary on the slippery slope that doing this might imply or suggest and we'll have some fun, because what would an ethics talk be without wandering down the slippery slope? We'll do that a little later to talk about what the potential, well, if you do this, what else could you do along the way? I won't dwell on this a lot. You all are very familiar with the simple terms here. You know, a principle-based approach to biomedical ethics, there are many different approaches, but using that approach often founds a lot on the notion of autonomy, the notion that well-informed individuals can make decisions about their healthcare and they should be able to do that free from coercion and we had a nice back and forth over dinner last night talking about limits on that. Certainly this notion is central to what many of us recognize as the concept of informed consent, but autonomy, I'd argue to you, really only has value if those with power, those who are providing care, respect it. It means very little if I say I want X, Y, or Z about my healthcare and everyone else proceeds to routinely ignore it. There are exceptions for the very young children, those who are not of right mind or otherwise incapacitated, but in general women and pregnant women are not felt to fall into any of those exceptions. And so the question I think at some level before us is to what degree should pregnancy or maybe the chance that someone is pregnant or could become pregnant limit an individual's right to make decisions about their healthcare. I would also suggest one of my core beliefs, just the way I act in life is a notion of fairness, of treating like things alike, the concept of justice. And I think that this case and others like it raise important questions of justice to what extent are women as a group, as a class, unduly burdened by pregnancy or the possibility of pregnancy, to what degree are those who can and cannot become pregnant unduly burdened. And so from the start we should recognize that this is a little unusual, right? I mean by some standards, this is brain dead, dead. How can we really speak about autonomy in someone who has been declared brain dead? You know, the philosophical I'm using there are the topic for another day. I think we can, and I won't expand on it in great detail. You maybe already have in other talks, but there are reasons why we care as families, as individuals, as a society about respecting the wishes of the dead or wishes they made before they were dead. It provides some distress to relatives, friends and family to watch their loved one being treated after death in a way that they had not intended. And I think it gives some of us who are among the living some distress to think, boy, this is what I want to happen to me, my body afterwards to think that that's gonna be routinely ignored. So seeing how the dead are treated, I think affects how the living feel, but it is difficult, it is a little odd to think about autonomy in one who is brain dead. But again, this is an odd case in many ways. The next bunch of cases are hypothetical. First patient is pretty much or could pretty much be me. And I'll ask a little bit along the way for a show of hands, but here's a not atypical clinical presentation that one would present to first year medical students, right? Fever, nausea, your white blood count is up. You've got some tenderness in the right lower quadrant. And folks know what this is, right? This is an acute appendicitis. And I recognize that in this day and age, there's talk about giving antibiotics and not operating, but for the purposes that today we'll pretend that someone's sick enough for, it was five years ago when we didn't use antibiotics, that the answer here to make someone better is to go to the operating room and do an appendectomy and take out the appendix. That's what healthcare providers would do. Could I say no? Sure, right? Anyone? Right? People say, of course. Okay. Matter of fact, kids at home? Maybe, so what if I'm a single father and have kids at home? Could I still say no? I think so. I'm glad afterwards in the discussion to hear objections to that, it'd be fair for someone to say, hey, you know, hey Jeff, you've got kids at home and they will be thrown out into the streets and what are you thinking about all that? But I could and, you know, again, this presumes and most of you only met me for 10 minutes. Presumes you think I'm of right mind and not crazy, but we'll assume that that's not the case. Okay, same case, does it matter if it's a woman who presents to the emergency room? I don't think so. I'm glad, there's always someone in the audience who likes to play the point counterpoint, but I think in the abstract, it really doesn't make a difference. And does it matter if she has young children and is a single mother, right? Is difference there, you know, woman with kids, man with kids? Probably not, we should tuck that away and think about to what extent we ask different questions of, I know at our hospital there are some forms that we make some mother's sign in the general hospital, not specifically in the OBGYN service, when they're refusing care that could have life-threatening consequences that I don't think are offered for men with children to sign. But in general, I think folks wouldn't object to someone here saying, no, I don't want napendectomy. Well, suppose she's pregnant. Can she still say no? I mean, this is a little different than our case. Here's someone that's rational in front of you who's pregnant. So I'm curious, there probably are. There's some that would say, yes, she has to have a napendectomy. Okay, I've certainly been places where folks argue to me strongly that that needs to happen. And the question that I toss back is exactly, how would you do that? How would you take someone, and that's the practical part. What, are you gonna sit on them? What would you take your thorazine dart gun from across the room and put them down? I don't know how you would do that. The next case is also a real one. This one dates long ago from my residency. Clearly it made an impact on me at the time. A 28-year-old woman, a homeless woman, came to our labor and delivery from the shelter where she was staying. She was 38 weeks pregnant. She'd had a bunch of vaginal deliveries before. She was with her kids. This was a family shelter. She was bleeding heavily and had frequent painful contractions. And I was somewhere along my residency and I was paged to come see her. And you know, residents, maybe not those that are in the audience here, but residents then were jaded lot and bleeding. I've seen bleeding, you know. I don't, you know, show me bleeding. And the person, the attendant that was with her brought out literally a large shopping bag like you get at the grocery store. It was filled with blood. Okay, so now convinced. Checked her two centimeters dilated and this was the fetal heart rate monitor. And some of you are obstetricians, others are not. Down here are contractions. So regular contractions. And up here you kinda see the squiggles that are going down with each contraction suggesting that maybe this fetus isn't tolerating what's going on and what's going on. Many of you know, I will tell you, is a placental abruption. So the placenta is separated from the wall of the uterus. That's up here and there's blood building up behind it. That presents a risk to the fetus because when the placenta is no longer transferring oxygen, the fetus will quickly become hypoxic. Moreover, it's a life-threatening emergency for a mother who is losing lots of blood and becoming coagulopathic as the clotting factors are consumed. So this is not a good situation for mother or the fetus. This is an easy situation in general and obstetrics. If I showed this to first year OBGYN interns, they would say, well, what I do now is a cesarean delivery, okay? And that, you know, she's two centimeters. She's not, you're not gonna get the time to allow a vaginal delivery here. Yes, you would do some things to be sure you had blood available because the cesarean delivery, if she's not clotting well, could be a mess. But once you had all that set up, you would quickly move, both for the sake of the mother and the pregnancy to do a delivery. So can this patient say no? She's awake in front of you. She says, no, I do not want a cesarean delivery. No, don't do that to me. Anyone think she can say no? Okay, anyone thinks that we have to do a C-section? We should do a C-section. So there's some people shaking their heads, yes. And I would say, and I'm glad to get to your question in a second, I would ask the same question I asked before. I actually have an answer in this case. How would you do it? I'm sorry, you had a comment or a question. Why did you write your own weakness that really doesn't want to know? Sure, so that's a great question and it comes up a lot around these decisions. I'm gonna set that aside for a second and we can come back to it. But I think that's just another case of some of what we're talking about here. So I'll step back for a second. We need to talk a little bit about these cases and in all interventions that we recommend or bring to bear for the benefit of a pregnancy and recognize sometimes we talk about fetal treatment. Right, I don't know, in Chicago but there are other places around the country that have fetal surgery programs or fetal treatment programs. And we should recognize that there is nothing that we do to affect the health of a pregnancy that is not done to a woman, to the pregnant woman. Right, I can't give steroids to promote lung maturity directly to a fetus and certainly any of you that have been involved in fetal procedures or so-called fetal surgery recognize that it is, for most of the procedure, the mother that is being operated on and not the fetus directly until you go through the mother. And so we can't intervene in this last case without intervening on the mother. And so I think a reasonable question to ask is what to call forced maternal treatment for the benefit of a fetus. And I'm not anywhere close to a lawyer. I would have said assault perhaps maybe last night. Someone suggested battery but I don't know the difference. Please. I think you are discussing the essence of those people who face patients like this. Certains are the ethical way of thinking. It's different from those that are mostly sitting in chairs and they discuss ethics because the rational person is not the one who is only awake and he says yes or no. Rational person says yes or no based on reason that it is rational. Not just being conscious and says yes or no. So there are people who say somebody who has appendicitis and all of a sudden it rests and he says no, I don't want him to say well that is his autonomy, he says no. But that's what the job of a doctor is to nod and encourage and find out why and why is it then and maybe I come back in another hour and talk to you. And so autonomy is not checking yes or no and I find it very much often what you are saying is the essence of what is different between those who face the patient and those they just don't from remote thinking of what John is to what Mel said. So I don't disagree at all and I thank you. You very nicely summarized my talk which is great and it's a nice day out maybe I could. No, I agree, a couple of thoughts about that. I think you point to a great distinction and in talking about these cases and talking about things like this and sometimes speaking with my legal colleagues I think you've hit it exactly. It is one thing to have hours, days, in this case in the first case weeks to mull it over. When a patient like this presents on labor and delivery someone has to make a decision now. And I absolutely agree with you that it is not if a patient makes a decision says no it's not oh they've checked the box. It's their problem. Good luck to them, see you later. That is exactly the job of all of us in healthcare to try appropriately I would argue to persuade to understand to ask someone essentially look. You've come to a hospital seeking care. Most rational people would care about their life would follow a decision that someone wearing a white coat with MDRN midwife after their name. Help me understand why. And you'll see as we work through these cases that there was an interesting answer as we did that. I think the issue sometimes is not so much that individuals don't have reasons. People generally in my experience have reasons for making decisions that don't comport with what we think is usual and expected. It's just that we haven't understood them. And that sometimes by understanding them one can then have some traction and make a different kind of appeal. So I apologize for the purposes of a talk like this I presented as a yes no but you're right. I mean it's a lot of back and forth. So but I think it's important because I'm often called. Some of you probably serve as ethics consults. I'm often not often but when cases like this come up people calling me up good right thinking people I should we go to court and get an order to do a C-section should we make someone have something done to them. And I think it's important to just as you articulate to think a little bit why would some have that reaction. Why when I asked would some in the audience have this woman with an abruption maker compel due cesarean delivery why did some not yes. And I think the answer is in our minds and clearly in the case before we think the benefits outweigh the risks. So we think there is generally general and again it's a shorthand here but good is better than bad by doing what we're recommending. And there is a real concern that surely the patient doesn't understand because this is so obvious that there must be I'm just not getting through or it's language or there's something that's being missed here. And some would say that it's just such a crazy decision that to choose not to do it is evidence alone that someone is not of right mind and not right thinking. You know in this last slide I talked about benefit benefit outweighing risks. We need to think about who the benefit is for in some cases when we're forcing things. Now in the abruption the benefit is for both mother fetus we're gonna ignore the question about whether or not a fetus is really a who or a what for the purposes of today. But what is the obligation of an individual to act for the benefit of another? Does one have to do something? Does one have to donate something? You have a child that needs a marrow transplant for whatever reason we'll pretend that it's your marrow that matches. There's a famous case, McFell v. Schimp or something like that where a relative could have gone a long way to save a cousin's life by donating bone marrow. Is someone compelled to do that? Does it matter if what we're talking about is bone marrow or stem cells, stem cells these days that you can get from peripheral blood or is it something big like a kidney? Does someone compel to do that? I think in general I can't, again all of you are wiser than I will construct arguments that I haven't thought of and tell me about them later on but I can't really construct an argument that compels someone to have to do something like this. I mean, look, let's take the case that we started with. You know, what about someone who's dead? In general, we don't take organs from, what do we call them, folks who had been alive and are now dead that was against their stated wishes. So it's difficult for me to imagine a case for making a living individual do something to benefit a fetus but maybe others will. But maybe others will. There is some existing guidance from professional organizations just because there's existing guidance doesn't mean it's right and so but I do offer it up to suggest that some reasonable smart-minded folks have thought about this and suggested an appropriate path. First of all, with regard to declining treatment during pregnancy, American College of OB-GYN would argue that pregnant women, like women like men who aren't pregnant can decline all treatments no matter how beneficial and that it's not our role is to persuade and educate and understand but not to coerce and there have been some writing about topics like this that have suggested, well, the reason to go to court and get a court order to do something is not really because you intend to do it but it's to convince the patient that you're really serious about this. Oh, now I see the doctor went to court and got an order, they must really mean what they say, they're not just pulling my leg. I think that crosses a line a little bit. And in a document that's mostly focused on end-of-life care and respecting and this was mostly as one might imagine in our profession focused on joint oncology patients, patient squishes, those are their surrogates, appropriate surrogates should be respected and then a bit of the document goes on to argue that pregnancy should not change that guidance or recommendation in that recognizing it's not just all about individuals, sometimes it's about facilities and their attorneys that facilities shouldn't stand in the way of individuals wishes pregnant or not. Most of you are familiar with this case, I'm sure. It's also in terms of existing guidance, I think many would say a decently settled matter of law. So this story here, Angela Cater had been treated as a child for Ewing's sarcoma, had been well and disease-free for a period of time, had actually, I am told, I'm led to understand, sought an opinion about whether it was safe to become pregnant, they said yes, yes, go ahead, get pregnant, she got pregnant and then tragically about 25, 26 weeks, Virial became apparent that the cancer was widely metastatic and somehow they had a notion that she had days to live, I don't know all the clinical circumstances. And the hospital, recognizing that she only had a few days to live, sought an order to have her undergo cesarean delivery. And this seemed to be against the patient's wishes, by the time a lot of this happened, she was sedated and maybe intubated, but she wasn't able to participate, but her family certainly agreed that that was her stated wishes and the obstetrician caring for her wanted no part of it. The court nonetheless granted, in order for the cesarean delivery, and they found someone who was willing to do it, the baby quickly died, the patient, Angela Cater, died in a day or two and I don't think it's a stretch to imagine that someone that critically ill, her death, her demise was hastened by having a major abdominal surgery. Now this is the perfect example of a mood case, right? The patient, the fetid, everyone's dead. There is, you know, the court's not gonna change nothing here, but the family in a number of organizations did bring it to the DC Court of Appeals, which I'm led to understand because where it's located is a fairly influential court and they wanted the order overturned and after three years of back and forth and argument, it was indeed overturned with the language that you see there, essentially as I read it, you know, kids don't ever do this again. This is not the right thing to be done. So there's a fair amount of legal guidance and yet, I'll show you what's out there. So I don't know why I'm picking on the State of Kentucky, but this is what's available on the Attorney General's website for the State of Kentucky. Living wills, there's lots of you. The right to make decisions about healthcare. No, healthcare may be given to you over your objection, except down here at the bottom, effectiveness of living well suspended during pregnancy. These are the forms that you sign that says if I have been diagnosis pregnant, that diagnosis known to my attending physician, this director shall have no force or effect. Okay, so it's easy to pick on Kentucky. There are great sites where you can find kind of what exists out there for laws and here, quickly, are a number of states. Look at California, not valid if pregnant. Okay, so boy, that's a pretty darn blue state and look at that. And the reason I part and pick and part on Kentucky is that some of this information came from a nice law review article from the Kentucky Law School, 31 states. This all adds up to 51, by the way, because DC counts as the extra one. 31 states impose or suggest limits in pregnancy and there's a gamut from no, you can't do it or you know, we won't respect it or we won't respect it if the fetus is viable or could viable, you can look at all of that but more than half of jurisdictions in this country would say that a living will is not enforced or valid if someone is pregnant and 15 states are silent and there are five brave ones. I actually couldn't tell you which ones that say, yeah, pregnant woman's wishes are respected regarding end of life care. I'll give you a couple quick updates just to keep you interested here. So the first case, the woman who had collapsed at 14 weeks of pregnancy, while number of weeks passed while all this was being fought out and she's brain dead so we can't say she's alive but her heart was beating and the oxygen, her blood was being oxygenated and so folks did an ultrasound and not surprisingly she had been hypotensive and hypoxic for a while and over a period of time that manifests itself as visible and important changes in fetal neurodevelopment so you can see spaces in the developing fetus' brain and it was clear that there was a devastating injury to this fetus that didn't make no nevermind at the time because of the laws I've shown you. It didn't have a provision for healthy, live born, it just was pregnant. And then the case that I was involved in as a resident so this woman's bleeding, abrupting, declining caesarean delivery, we did move her not forcibly but we moved her to the operating room because everyone anticipated that as I and others continued to talk the bulb would go off and she would say yes, let's do it so we thought that being there made sense but she continued very clearly to decline caesarean delivery and language that was crystal clear that no one could not understand. So why do the laws exist? Well, I think a lot of energy in perinealethics gets focused on the rare cases of what's perceived as conflict between fetus and mother. Now, to some extent, pregnancy is always a small risk to a woman's health but it's pretty darn small and there really is the vast minority of circumstances in which there's a dramatic conflict like in the first case or in other cases that we might imagine and really, so you heard in the introduction, I practice maternal fetal medicine. What I spend most of my time talking to folks about is not doing things that I think are beneficial that they don't want to have done but keeping patients from doing crazy things that they want to do because they think it's gonna be beneficial. Oh, I'll be on bed rest for 30 weeks with my feet up in the air. Oh, I'll undergo this, that, the other procedure. I want you to put a tube in, you know. So I really think that the inclination of many pregnant women is really about sacrifice and not this notion of withholding care and of course, we'll recognize that so much of this is tangled up in the ethics and the politics of abortion and we can, you hear on another day, you probably have, you can have long and healthy debates about the moral status of the fetus. I need to set that aside today. I don't think the moral status of women or pregnant women is truly a matter of debate. So now just some brief fun with the slippery slope. So if we start thinking about, well, there is an obligation if one is pregnant to do things or have things done to you on behalf of the developing fetus, where might that take us? Right, could we say we wanna restrict or compel behaviors short of end-of-life treatment? I mean, that's the much more common case that obstetricians and midwives, family practice docs who take care of pregnant women are faced with. You know, what would we, you have someone who has bad diabetes that can't seemingly won't control, you know, that I could come with a long list of risks to the developing fetus there. Patient who declines antiviral therapy with an HIV infection. Maybe would we tell folks, you know, not to do things? Well, there's a small risk someone thinks with an antidepressant of this, that or the other thing. I'll recognize that that is not totally settled science there, but there's a small risk. So it's your obligation not to take this medicine even though it makes you feel better, allows you to go on. Anti-seizure meds, right? We recognize dilantin, lamyctal, other things have clear teratogenic potential, right? Would we say, well, that's harmful, you can't do that. What about before, early pregnancy? Right, that first part of pregnancy, organogenesis is happening, that's a critical time for potential environmental harms. Right, I see a number of, it seemed to be young women in the audience. You went out tonight to have a beer, a glass of wine, we went into the bar, could they plunk a cup on the table and say we need to do a pregnancy test first? You know, to be sure that you're not pregnant before we serve you, right? There are clear effects early in pregnancy of fetal alcohol. There, I mean, you could go on and on here. I think it's useful because sometimes these cases I think many people would say no, of course not, you know, people can have a drink in pregnancy, I can't really stop them. You know, illustrate the more extreme cases that we're talking about today. And again, exactly how would you do this? So you had a patient who wasn't controlling her blood sugars well. Would you hospitalize her? Would you hospitalize her and stick the insulin into her? How would you really do that for how long? I'm just not sure at a practical level if someone came to me with a core order how I would really do that. And some will raise the objection, well, wait a second, Jeff. You know, are you gonna, once the baby's born, can parents do anything that they want? Now, this is actually an interesting philosophical argument. There are some who would argue that, you know, until a neonate is interacting with decisionally capable, you could bring them to a mountaintop some place and say, we won't go into that today. But the differences between a fetus and a baby are obvious, at least I think to me that you can first of all directly treat a baby. In general, in our society, we think of babies of having some rights and independent status. And at least, again, at a pragmatic level, I think birth is a clear dividing line that many can recognize. It's no longer an issue of autonomy is treating another. I mean, that said, parents have a fair degree. I've messed up my children but good and I have a fair degree of latitude to have done that. But there are some limits in what will let parents decline or not, those cases are often too fought out in court. So what to do if, and I would say I'm someone that, you know, disagrees with what happened in Texas, what's a moral provider to do? Well, an easy answer is to say disobey. Don't go along with it. Pull the plug. You know, stop the machine that's pushing air in and out. That's easy for an ethicist to think about in the confines of a room like this. But the people involved, these are the bosses telling them it has to be done. It's their hospital, it's where they have privileges. Right, I was a doc in Texas where this case was happening, I reached in, I took an action, they'd say, that's it, you're out of here, right? You're not allowed to do that, you know? Attorney General in Texas could get mad at me. I've broken his or her law by doing those things. Some will tell me later it's a little bit of a cop out but I think that one thing those who feel moral distress and objection can make that clear to their colleagues, to administrators, to the public and work albeit slowly to overturn some of these things and I think that there's a greater option to decline and say, as all this is starting, I'm not gonna be part of this. You know, I'm not gonna be the one that is starting this whole ball rolling. So some conclusions to the cases and then you all will have some thoughts and comments and we can have a discussion. Eight weeks after the patient collapsed, she was 22 weeks along, the court indicated just what you recognized from the beginning that she was brain dead and the law wasn't meant to apply to folks who were brain dead and they allowed the machines to stop, her heart stopped, the fetus's heart stopped as well. I put her name up there, it was widely, she was referred to in the press, her identity was widely known at the time but Texas certainly dodged the more interesting question about whether or not any of this would be okay if she hadn't been brain dead. Suppose she was terminally ill and needed support but wasn't brain dead. The other case, so you're gonna love this. Okay, so as I was sitting there counseling her, we'll leave how it happened or who would, but they gave her the stuff in the IV that put her to sleep and so she went to sleep and we went ahead and did a cesarean delivery, it was totally uncomplicated, it was just exactly what we thought was going on and mom and baby were perfectly healthy. And I went to see her later that day, the next day and she was actually terrifically grateful. It's a lot and I said, what's going on? How come you didn't want us to do this? I was asking, you know what was happening and she explained that she was living as I said in a family shelter that had her three other kids there and family shelters were then, are now an unusual thing so getting a spot is a coveted thing and the rules of the shelter were that you couldn't be absent from the shelter for more than two days and if you were they gave up your space and she understood that if she had a cesarean delivery that we would likely keep her for four days in the hospital and that she had a vaginal delivery that she would stay for two days and so she was like I'm gonna have a vaginal delivery so I can get back to the shelter and keep my family together. That's a pretty darn rational line of thinking and it's also one that once understood is of course trivial to deal with, right? The shelter didn't kick her out, we made a full call, they understood what was going on, it was all good. It points to the challenges, you know, going back and asking what do you do when that window isn't there or you're not getting, you're not understanding and I still don't have an answer to it. I think the larger question in retrospect understanding things that it make what we did appropriate and ethical. Clearly I've thought a lot about this circumstance over the years and I would argue not. I don't, at some level the outcome was okay in retrospect all involved maybe including the patient may have been glad for the outcome. I'm not sure that at the time it was right I'll end where many of you imagined I would end even before I started. I do think that there is an extremely strong case to be made that the wishes of patients, their surrogates should be respected at the end of life, assuming rational and of appropriate age, regardless of whether or not they're pregnant in particular the right to decline care. I've tried and some of you will toss things at me I haven't thought of but I think is largely without exception. I do worry about the slippery slope consequences and these aren't just hypothetical many are aware of all kinds of treatment being compelled during pregnancy pregnant women. Lynn Paltrow in New York runs an organization that's focused very much on these cases. Think of one recently a woman in Florida court order preterm labor at 22 weeks she was ordered to stay in the hospital rather than be at home with her family and I don't know how they did it but they managed to keep her in the hospital at least for a bit. I have to add as an internal fetal medicine doc there's not a shred of evidence that that makes any difference into when someone's going to deliver. And then there's a pragmatist I'm not sure how you make all this stuff happen even if you think that it's right and there's an argument for it. So those are the cases and the thinking that I wanted to present to you today. Again I appreciate being here. I'm very mindful of the fact that I'm in a room within a place with folks who have thought long and hard about this in ways that my brain cannot. And so I do welcome objections and thoughts and questions and we can think together about it. I'm mindful that what I presented will seem overly simplistic but I think it's at some level these are very basic principles and we as ethicists, as care providers that focus on the health of women we need to be very concerned about any instance of their erosion. I'll end there you can throw things at me now. Thanks very much. And very interesting. I have a question about the serogacy. The mother who, the mother and the lady who's paying her to carry the babies and stuff like that. The serogate carrying triplets. She is not doing well. Okay. And the mother who paid for her to carry the babies want her to have a C-section because she want these babies alive. And she does not want to have a C-section. I'm sorry, I'm missing that. The serogate carrying triplets. Yeah. And one of the babies, one of the fetuses is not doing well. So the woman, the egg donor. The woman. The question is actually simpler if we say the mother does not want to have a C-section but one of the baby is not doing well and they want her to have a C-section. The couple who paid for it. I mean, I just don't see a case or a way to force someone to have a major surgery against their stated wish. Now, again, that's not to say that there's not a bunch of discussion that's involved and helping individuals understand the consequence of their decision. In the case that you present, I mean, serigates are ripe for kind of hypotheticals like this but presumably a lot of thought in advance went into her thinking about this. But I'm glad for someone to object. I just don't see a way to do it or a clear moral argument to make her have an obligation to do it. I have a question about the concept of rationality and I'm not sure exactly what my question is. So bear with me a bit. I mean, you mentioned it a few times and a few other times you kind of implied it that we're talking about people who are capable of making rational decisions. Now, I'm not talking now about someone with dementia or someone who's too young to be rational, but human beings are not primarily rational creatures. There's great bias and I like this bias because I'm a University of Chicago graduate so how could I think otherwise? In favor of rationality. However, I know that I don't act rationally an awful lot of the time nor does anybody else witness the recent election. And I guess I'm saying that because physicians in particular are probably biased in favor of rationality, they may be likely to overlook other people's non-rational decisions and not give them the same credibility, not value them the same. And I'm wondering how you figure that into your equation. Yeah, I think, and then I freely admit I may be, I haven't thought in great detail about when I use the word rational or rationality, the specific definitions and tests for such, but I think you're getting at a great point that it's, and then to use a loaded term, it's about individuals' values and their ability to understand their values and articulate their values. And there, I'll return to what I said before. I think when people make decisions that don't match with what we expect, they often have reasons. And those reasons can be from the heart, the spirit. And I don't mean to suggest that those should be discounted any less. But it can be, it gets to the question. Is there a decision that someone could make, someone free of, we'll assume that they're free of mental illness, are able to understand what's being communicated to them? Are there decisions that someone would make that would just be evidence of, no, that alone, you're saying that, you're crazy. And I don't know, we could come up with some, right? Is it, I haven't thought about this before. If someone says, okay, I'm gonna shoot myself in the head, is that just, you're not right, that's crazy. Are there other things that folks could do? I don't know. I'm, you sense, I'm pretty reluctant to assign healthcare decisions to that category, but people could object. There were some who would say, look, woman is having an abruption, and it's going to save her life, promote the health of the pregnancy. That is just crazy, and you can't do it. Your second to last slide, your conclusion slide, you basically wrote that the informed refusal right of a pregnant mother is near absolute. And I guess I'm wondering if you thought of a situation that would be an example where it's not absolute, and what you were getting at with that. Yeah, I, so it's great. I reverted to kind of institutional language, the head. H, there you go, she'll get me. So, when we were, I'm sure I'll get trouble out of mine. So when we're debating those statements and things like that, there was a healthy debate for is absolute, and that makes people, you know, someone's going to come up with the case or the circumstances in which it's not absolute. So the way it was written was, is near absolute, and some of the effect that we cannot even, and we cannot imagine a case in which it, and I can't imagine a case in which someone can't say no, even though they're pregnant, but a lot of smart people, creative people, in the audience, someone, maybe you, you, someone will tell me the case. Well, I think we doctors now living in a period of ethical confusion. Obviously, what John Stuart Mill and Conn said so beautiful that if everyone or every country followed that, we would have had a wonderful world, there would have been peace all over, no one bombed any other countries. But now, because of all atrocities in Germany, syphilis areas, oppression, we have come so far to this side that we have lost the interpretation of autonomy, and therefore we have lost our ability as a doctor to have an opinion and have a judgment. Sure, ultimately every person has autonomy. You have perfectly have autonomy to commit suicide, but you cannot come to my house and do it. If a pilot has perfectly perhaps has autonomy to commit suicide, but not when he is up in the air, because now each one of us beside autonomy, we have duty and duty for what we have accepted to do. The mother who was just had a baby and did not want it to have a C-section or whatever treatment, that is abusing the child. If we consider that infant is a human being. If we don't think it is a human being and it is an appendix or a little tumor, then yes, but jeopardizing and as you said, some people say this is my autonomy, drink and have cocaine and all these things. I'm bringing a child in this world which is disabled for the rest of the life and also the society is disabled because they have to take care of him. So autonomy to me seems relative, not necessarily something that everybody says, oh yeah, you are autonomous, you could do anything you could. And so we live at the moment, as I said, in a period of a confusion in medicine. If that 28 year old person in emergency room doesn't wanna have operation and I don't do operation on him, I might get bite from the court and I'd be excused, but I do not excuse myself morally that I listen to that person I just walked out without really exhausting any mean that I have to convince him to have operation. Now somebody my age in multiple cancer and it doesn't wanna have an operation, that make it rational. So there is no reason to argue with that. So I think I am very thankful of the kind of thing that has been bothered me all the time in my discussion with my wonderful friends and you brought it up nicely. Thanks for all that. I mean, I do wanna make it clear. I don't think that it's a question of physicians not having opinions and expressing those two patients. Like many of you, I work with folks younger in their career and I readily admit to patients somewhat to their distress. This is what I would, I think there is a generational thing when patients say, what would you do, doctor? Or what would you recommend? There are some that say, oh, that's not for me. I don't recommend or tell, I'm not you. That's not important. I disagree with that. I think it's fine in an appropriate way to let patients know what you would do for yourself, what you recommend. Autonomy, as I see it, is not about not making recommendations. Medicine is much too complicated, I think, to just simply dump the facts in front of an individual and say, okay now, tell me what you're gonna pick. So I totally agree, you can't leave the room and the more you're convinced that a treatment is beneficial and the benefits outweigh the risk, the more the obligation is to do what you can to help patients understand it. I had a couple of other things to say but I've gotten lost in the own model of my own thoughts. Thank you for that great talk. I really appreciate that example you gave. My question has to do with emergent consent. It sounds like in the circumstance you describe having, I'm not that far out of residency, I recall often invoking emergency as a almost overriding imperative in which autonomy becomes diminished. What I wanna know is how do you propose when in an emergency we feel obliged to do something we don't think is right? In other words, when the default in an emergency seems to contradict what we think ought to happen, how do we reconcile that? Well, it's a difficult circumstance. We'll recognize that it generally is a rare circumstance because in emergencies, many patients, many individuals are willing to give up their autonomy or understanding to say, okay doc, okay nurse, okay whoever, do what you need to do. That's why I'm here just as the gentleman suggested. What's much more tricky is as in the last case I presented when someone articulates a clear no. I think the answer then is to help individuals very quickly understand this is an emergency. I can't explain to you all of A, B, or C but I really believe based on what I see that if we don't do X, Y, or Z now, the following will happen, right? Autonomy, informed consent is always adapted to the circumstances. It's easy to have a weeks long, here's the literature, here's the paper I printed out for you when someone's having an elective procedure. There are times when you just can't, where time doesn't afford that luxury but I think then you can explain simply that to patients. Again, it's a little different to me when someone is clearly articulating, no, I don't wanna do this, you know. Hi, you're bleeding to death from a gunshot wound. I am going to do the following, you know. I don't know, people will have allergic reactions now but if someone said, didn't jump up and say no, you will not. I would take that in an emergency situation as being, okay, I'm gonna go ahead and do that but others may disagree. I like to point out that the issue with the nose testers is that we have to do a lot of time to talk to a lot of our patients, a lot of the service has to be slanted and a lot of our other service distributions are coming into emergency centers. Coming into us for the first time. So often we have the ability to kind of sit down with our patients and really talk to them about the potential things that will happen at the time of their delivery and that there may be very quick emergence to the expected events and I feel like there are opportunities that are sometimes lost to talk about these like occupational delivery or the role that C-section has in a setting that's more controlled, rational and the ability to really have a meaningful exchange rather than kind of coming in after a person that's been second to later or pushing for five hours to get a start throughout the day and you're not saying, well, they're making a little problem with those talks and maybe even more of that. Yeah, I think you're right. I mean, relationships, look, they're important in so many ways, especially in medicine and having those relationships, we've all had the circumstance. The healthcare, if someone, you know, being willing to let us do what we recommend because they trust us. You're giving me a healthy dose of deja vu. I, emergencies are tricky and I remember years ago, many years ago, seeing an auditorium like this where I was where you're sitting making the case for the one with the abruption saying, well, you don't understand. It was this, we had to act right then. How would we, and I become much, I am now the person sitting in the front of the room that with time has reconciled myself to occasionally the difficult circumstances of watching preventable bad things happen because that was not the patient's wishes. Those are really difficult circumstances. I'm not suggesting otherwise. So you're saying at this time that in retrospect, you would have let her die because of those insurance? Yes, yeah. All right, I'll just talk about it. I think I have a couple of thoughts here. First is that when someone tells us that they are actively suicidal, we can and will actually hospitalize them to prevent it. And there's something about coming to a hospital and saying, I'm here, can you help me? That puts us, I think, in a different position. I don't frequently, I don't always agree with Chavez, but in this case, I think I do actually. We don't have to invoke the moral status of the fetus in order to protect the women and the man in cases two through five. These people are here presenting with what they didn't anticipate happening that day. Very difficult situation. They came to doctors presumably because they wanted somebody to do something to help them in a difficult situation. And perhaps there are many reasons why they wouldn't say yes immediately to the idea of having a body altering surgery emergently happen to them that day. But they also didn't come here, if they really did have, if they really were seriously opposed to treatment, they probably shouldn't have presented to a medical center. So the problem is, by all issues with your statement that then you need to explain to them, this is an emergency, I'm going to do this. And only then not proceed if they jump up and say no. I think that actually falls in the category of coercion. By saying to a patient, if you don't let me do what I'm going to do, you'll die. That comes across sometimes more coercive to patients and they may be more likely to jump up and say no, no, no, don't do that to me. I think there are times when we as physicians need to accept that we're going to make a paternalistic decision for the best that is possible in this patient when the benefits so greatly outweigh the risks that we need to just make a decision and say, I'm sorry, I'm doing this. I get the pragmatism and I agree with you. If you can't make it happen, you can't make it happen. But we should be willing to stand out on a limb and say this is what is best. I'm going to do this next. So just three quick thoughts and then I think ultimately you and I may disagree. But I would say that first of all, folks come to hospitals. They don't understand all the things that are happening. The woman who's bleeding thinks she's going to have a vaginal delivery. She's coming to the hospital, have a vaginal delivery. People come to hospitals and we spring things on them all the time that they're like, I didn't think you were going to tell me that. Forget about it. So I see less traction in that argument. I think what you said though is an example of a conversation that one could have directly with a patient that would be remarkably compelling. Oh, I get it. Right, I came here to be helped. You want to do this to help me, you really believe it. And I don't think, although I understand that the language can be dramatic, you will die. There are some times when that's truly the best and succinct evaluation of the circumstances. And I don't know that it's coercive to deliver that. There are other ways, there are plenty of ways that you can say it, but you have to do your best in the circumstances. And if you really think that someone's going to die if you don't do X, Y, or Z quickly, I don't know that the right thing to do is to dilly-dally around. I know you're not suggesting that. Yeah. But stake in the ground today, I'm doing what's best. So stake in the ground, but not stake in the patient. I think what's so interesting is that most of these questions around informed consent had nothing to do with the pregnant status of the woman. Yes. Which is really interesting. With the exception of the first set of comments about kind of almost like a relational autonomy, right? Is your autonomy somewhat limited due to your responsibilities to others? But I found it very interesting that none of the questions thereafter really addressed the pregnant status of the woman. Which is why a lot of this comes down to my fairness and justice. And just let's agree that we're going to treat people the same. And you may be better here in this city, in this part of the country, but I see where I am in all kinds of subtle obligations and differences. Now, I just can get back. They're really awesome. OK. There you go. I have one quick question. And you wrote about the Munoz case in the New England Journal. Yes. And I've sent that out to most. I think, did the fellas, did you guys all get that? No? No. OK, I'll send it out. I'm curious to hear what the response was from the medical community to that piece. In general, I think that in some ways, the Munoz case is an easy case because she was brain dead. But I did get a couple of the, you don't care about the baby, the child, and that. So there were some of that. There wasn't as much. I didn't see, is there maybe two or three letters? Not a crazy amount. And they were felt by the editors to be not significant enough that they didn't even want any response to that. But there was an interesting amount of chatter that is certainly preserved on the internet that you can see about that. It was back in, it harkens back to a different time when that was all the talking heads talked about. And not what's going on now. And it's hard to dissociate this, as you said, from the growing zone in Texas around abortion and a lot of the dialogue there. Very interesting. Thank you so much, everyone. Thanks, everyone, for calling.