 To introduce our next speaker, Dr. Erin DiMartino. She's a Pulmonary and Critical Care Fellow, no, attending at the Mayo Clinic in Rochester, Minnesota. Dr. DiMartino received her undergraduate degree from Williams College and attended medical school and residency at Dartmouth. She stayed at Dartmouth for her residency and then went to the Mayo Clinic to pursue fellowship and pulmonary and critical care. Dr. DiMartino completed the McLean Center Ethics Fellowship two years ago. Her primary research interests are in clinical medical ethics with particular focus on advanced care planning, surrogate decision-making, and health policy. Dr. DiMartino has led a group of scholars from the University of Chicago, Harvard, and the Mayo Clinic to write a powerful paper on healthcare surrogate laws whose paper was published in April 2017 in the New England Journal. Today, Dr. DiMartino will give a talk titled Pregnancy as an Exception to Self-Determination, U.S. State Laws and the Critically Ill Pregnant Patient. Please give a warm, warm welcome to Dr. DiMartino. Thank you for that welcome and for the opportunity to present our research at this beacon of scholarship in clinical medical ethics. I have no financial disclosures. For patients who have lost the ability to make their own medical decisions, decisions for those patients are legislated on the state level. Processes have been clarified through waves of legislations in the various states, including advanced directive laws that allow an individual to prospectively make or articulate treatment preferences in the event of a future illness, or third party, empower third parties to make medical decisions such as default surrogate statutes or durable powers of attorney for healthcare. And these third parties are then authorized to participate in medical decisions on behalf of the incapacitated patients up to and including decisions around withdrawing and withholding life-sustaining therapies. It has now been well established that these statutes are tremendously heterogeneous across states, and it is emerging that there is poor understanding and awareness, I would argue, among the populace, but even among physicians who care for the patients in these states. Fortunately, decisional incapacity and critical illness during pregnancy is rare, but pregnancy is a vulnerable time in a woman's lifetime, and she may be more likely to interface with the medical system for reasons of trauma or sepsis or hemorrhage, and end up on life-sustaining therapies in one of our intensive care units. As we were doing previous research, statutory research, we noticed this mattering of references to pregnancy and end-of-life legislation, and yet realized that these had never been systematically examined, and so we set about to do so. We looked to establish the prevalence of mentions of pregnancy and end-of-life legislation in advanced directives. We wanted to know both how many of these mentions were, mentions which enabled or empowered a woman to make treatment elections in the event of an incapacitating illness during her pregnancy, but also on the other end of the spectrum, how many of these mentions of pregnancy restricted a woman's choice? And more specifically, whose choice, whose voice was being affected? Was this the woman's own voice through her advanced directive, or was it a third party impeding the ability of a surrogate to step in and make decisions on behalf of a loved one who had incapacitating illness during pregnancy? We were also interested in whether the likelihood of fetal survival influenced these laws, and we wanted to correlate whether the statutes and each state's advanced directive matched up against each other. So in order to perform this analysis, reviewers with medical and legal backgrounds perform meticulous statutory review combing through the statutes of all 50 states in the District of Columbia, and also identified official advanced directive documents for each state, looking in the agencies, state agencies like the Department of Health, and also in each bar association to try to find official documents that are proposed by the governments of each state. We entered these into a shared spreadsheet, and when interpretive discrepancies arose, they were settled by consensus among the author panel, and these statutes, we just completed the review last month. So this, in contrast to the previous two presentations, we won't be doing any anatomy lessons, and in fact, we'll be talking more about geography and health policy here. There's a lot of information on this slide, and I'll walk you through it. The first thing that hopefully is striking you is that there's a tremendous amount of heterogeneity across the states. The green states of which there are seven are states that ask a woman to indicate her treatment preferences in the event of a life-threatening illness during her pregnancy through her advanced directive. There are 14 states that don't mention pregnancy at all in their advanced directives or end-of-life legislation. Let me emphasize that. Only 14 states don't bring up pregnancy. There are 18 states, which are depicted in pink, that prohibit withdrawal of life-sustaining therapies from a pregnant woman if it is felt that her fetus is likely to survive with ongoing application of life-sustaining therapy to the mother or to the woman. And finally, there are 14 states that have restrictions regardless of the likelihood of fetal survival, meaning that under no circumstance, if the woman is found to be pregnant, can life-sustaining therapies be removed from the patient? So whose choice is impacted? Here, we list the 30 states that have pregnancy restrictions. So in total, 30 of the 51 have a pregnancy restriction, again, including the District of Columbia. And in this slide, these are all of the pink and red states from the previous slide. We were interested in how many impacted first-party decision-making, so invalidated and advanced directive, and found that 25 states invalidate a woman's advanced directive when she's pregnant. What does that look like on paper, you might ask? So here's a quote from a statute, the declaration of a qualified physician, and declaration meaning advanced directive, of a qualified, excuse me, patient diagnosed as pregnant by the attending physician, shall be given no force and effect. And before everybody in the room sits back and feels comfortable that this must be from some far off land, this is Illinois. 19 states forbid third parties from withdrawing or withholding life-sustaining therapies. Now again, remember that the third parties are both durable powers of attorney for healthcare, but also default surrogates who are appointed at the time of an incapacitating illness. And these 14 states indicated with the white arrows place a blanket restriction, meaning that neither the first party, through an advanced directive, nor a third-party decision-maker, the loved one, the family members at the bedside, is authorized to withdraw or withhold life-sustaining therapies from these patients, just on the basis of pregnancy. So 28 states contain within their statutes a pregnancy restriction. You might be surprised to learn, as we were, that only nine, so about one in three, communicate this restriction in their official advanced directive document. So unless you go looking for it, there's a very great chance that you would never know as a woman who's completing an advanced directive or as a clinician, until you're in a situation like is depicted on this slide, that there is a potential conflict between what is written in an advanced directive and what is permissible under the law. Additionally, two states, Washington and Idaho, don't have a statutory pregnancy restriction, but do indicate on their official advanced directive documents for those states that the document is invalid during pregnancy. Alaska, the Alaska Health Care Decisions Act, contains a pregnancy restriction, but very confusingly, part of that statute includes a sample advanced directive, and the language in that sample advanced directive allows a woman to indicate treatment preferences in the event of her pregnancy. This was all passed contemporaneously as part of one statute, direct conflict. We also found that four of the restricting states require pregnancy testing for any woman of childbearing age prior to issuing, say, a do not resuscitate order or any decision about withdrawing or withholding life-sustaining therapies. Conversely, five of the restricting states do contain a caveat allowing discontinuation of life-sustaining therapies in the event of undue pain and suffering that cannot be alleviated by medication. In a highly unique provision, Pennsylvania assumes the financial burden of ongoing life-sustaining therapy applied to a pregnant woman. 37 states mention pregnancy in their end-of-life legislation and advanced directive documents. How did we get here? This is a vanishingly rare clinical situation. And when did we get here? I think our research to date has answered fewer questions and opened up a bunch more. One of the questions was when did this all happen? So as you can see, these acts have been enacted over the last 30 years, starting in 1979 with an uptick in legislative activity in the early 1990s and then again in the mid-2000s. The most recent new legislation around this was passed in 2011. But the tide does seem to be turning. Earlier this year in Connecticut with support from the American College of Obstetrics and Gynecology in the ACLU, Connecticut repealed its very strict pregnancy restriction law. And four women in Idaho have filed a lawsuit challenging the constitutionality of their state's pregnancy restriction under substantive due process. So for the implications of this research, I'd like to start at the bedside because that's where I spend most of my time. And though I haven't personally faced one of these cases, it's difficult for me to imagine a situation in which there wouldn't be tremendous thought and care and scrutiny given to a decision for a grave, gravely ill pregnant woman, both because of wanting to honor her wishes in the way she would want to live the final days of her life and also out of respect for a potential life that is impacted by those decisions. I think to the extent that we now know these restrictions exist, transparency is a minimum bar. These should be well established and well communicated to the citizens and to physicians. And so that women can engage in proactive advanced care planning, particularly as they face pregnancy or high risk pregnancy. It's important to acknowledge that these laws represent quite a deviation from standard practices around consent, which we've been talking about this morning, around surrogate decision making, and importantly around the refusal of unwanted care. We, as I said at the beginning, are left with more questions I think than we have answers, but it's important to ask ourselves if these laws reflect our values as a society and if the state should be intervening in such highly personal decisions at a painful time for the family. And moreover, whether it's constitutional and permissible to do so. So I'd like to thank my collaborators, in particular, Beausberry, who's been instrumental in pushing this research forward and now open up for questions. That was an excellent talk and review. Thank you very much. I assume you're gonna publish this. It's in review. Excellent. You did ask one question and that was how did we get to this state? I have one partial answer. After returning from my fellowship here decades ago, I was part of a very small group in Arizona, one of the states that does mention it, but it's, you know, permits use. And how did we, why did we mention pregnancy? Because our small group looked at the former law, which we were asked to replace and it said it won't be used in pregnancy. And we said, no, we can't do that. And so we specifically put in the, yes, it can be used in pregnancy. And so that's a partial answer. That's fascinating. Thank you. And we're starting to look actually, not only at the dates of original enactment, but the dates of revision. And these laws, some of them have been revised a dizzying number of time. And what we're trying to parse out now is, were these revisions substantive or were they simply changing the order of certain other parts of the advanced directive legislation that had no bearing on pregnancy? And so I think it's interesting. There are some states though that are touching these laws on almost a yearly basis over the last decade. And some of them are making substantive revisions to the areas around pregnancy and choice. Bronner, UFC. This is really important work. So my question is, you mentioned that this is a fairly rare occurrence. Do you have any idea of the numbers of actual patients who this has happened to? And it seems, you mentioned that a lot of doctors don't know these rules and I for one did not know that that was the rule in Illinois. And so it'd be really interesting to see what really is happening to pregnant women when they do get gravely ill. So I can answer both in terms of the literature and some anecdotal information. First, in terms of the literature, we know that less than one in a thousand ICU admissions is pregnant. And there are case reports of, but there are not a lot of studies that describe series of patients. So it's difficult to quantify how many of those ICU admissions are cared for and then dismissed and go on to deliver a baby. What we do know is that there are case reports of women who have sustained devastating, usually neurologic injury and life sustaining therapies have been applied up to the point of live birth and there are even some case reports that describe good outcomes of the child several years later. But in terms of the frequency with which these laws are referenced, we think it is vanishingly rare. I have surveyed around 20 or 30 intensivists informally with cumulatively hundreds of years of experience and nobody could tell me an exemplar case where such a statute would have been applicable. So this is incredibly rare and yet very frequently legislated. Hi, September Williams, ninth month consults. So my question is, is that you're seeing from the end of the ICU, but how often are you seeing women of childbearing age arrive in the ICU with advanced directives that actually include a dialogue about what they weren't done with pregnancy? Right, almost never unless they have a life-threatening illness of which they are already aware and to be more inclusive some of those women would have a pulse instead. But very, very rarely both women and men. And in fact, women are as part of Medicare rules are instructed to be made aware of their right to complete an advanced directive as they're receiving intake as they're coming into the hospital even to deliver their baby. And as a person who delivered a baby a little over a year ago, I remember how dismissive the nurses and different administrators were when they would ask me that question. Well, do you have an advanced directive? Not that you need one, but do you have an advanced directive? Until you do. So I asked them to stop saying that. But beyond that, no, it's vanishingly rare that we encounter somebody in their 20s and 30s with an advanced directive and I've never. I've never seen one that specifically addresses pregnancy. That might be one of those things that can be done instead of the pelvic exam during the gun. I like that. I like that. I like that. I like that. Yeah, done. Norton Healthcare, Louisville, Kentucky. I don't have a question, just an obvious comment. Who writes these laws? And you know, with the gerrymandering and voter suppression in this country, regardless of what your political stripes are, we don't have representative democracy. And so we've got to do something about that because these legislators in my own state in Kentucky don't represent the values of the majority who populate Kentucky. Thank you for that comment. Good morning, everyone. So on the matter of rarity, my instructor usually says, if it happens to you, no matter how rare it is, it happened 100% of the time. I have a few questions. How do these state laws correlate with abortion laws, for example? And does the absence of mention of pregnancy open the door for medical bias when it comes on to the state, for example, California, that doesn't have a status with regards to this? And when you mentioned pregnancy, how far, how advanced are these pregnancies that you mentioned? Are they viable pregnancies or, you know? Sure. What do you think, can you present to that? So only two states defined viability. I think it was Louisiana and Florida. Most of the other states just kind of have this vague language around likelihood of survival with ongoing application of life-sustaining therapy to the mother. So that conceivably could be, pardon the turn of phrase, could be from six weeks old. And in some cases, in Texas in 2015, this law was mistakenly applied to a person who was of 14 weeks gestation. And there was ongoing mandated medical treatment. So the question of survival or viability is a very gray line, and it's rarely defined in the law. We are going to compare these, this map, to maps of abortion law. And remind me of your middle question again. The other one was a matter of the absence of mention, how does that affect bias in decision-making by a medical profession? Yeah, I mean, that's a great question. I think the absence of mention, in my opinion, probably leaves the door open for less legal interference with these decisions without being able to lean on a law that's been passed by the state legislature that means that a hospital feels they cannot withdraw life-sustaining therapy. I think there's probably more latitude given to the family and loved ones in making these anguishing decisions. But we don't know that for sure. One question? OK. Yeah. So he actually asked my question, so I just wanted to say good talk. OK.