 Hi, everyone. Thank you so much for coming to this, the 20th lecture in this year's 2016-17 McClain Center Series on Reproductive Ethics. The series is jointly supported by the McClain Center for Clinical Medical Ethics, the Department of OBGYN here at the University, and the Buxbaum Institute. It's my pleasure to introduce today's speaker, Dr. Lori Freeman. Dr. Freeman is a sociologist at the University of California at San Francisco. She's in the Department of OBGYN. She also teaches in the School of Public Health at UC Berkeley, is part of advancing new standards in reproductive health, also known as Answer at UCSF, and also a Greenwall Scholar. Dr. Freeman received her BA at Oregon, at University of Oregon and her PhD in Sociology at UC Davis. Dr. Freeman investigates the ways in which reproductive health care is shaped by our social structure and medical culture. In her book, Willing and Unable, Doctors Constraints in Abortion Care, she explores a qualitative study of the challenges to integrating abortion into physician practice. Unexpected findings from those physician interviews led her to research and write about the intersection of religion and health care, especially in Catholic institutions. Dr. Freeman examines how conscientious objection in medical practice operates at the institutional level. Dr. Freeman's talk today is entitled Women's Perspectives on Receiving Care at Religiously Affiliated Institutions. Please join me in giving a very warm welcome to Dr. Lori Freeman. So today I would like to talk with you about patients' perspectives on and experiences with religious health care, or more specifically Catholic health care. To be clear, when I say Catholic health care, I refer to the institutions, not individuals. Many research and write about the rights of individual professionals to refuse to provide services that conflict with their beliefs. However, individuals are legally protected from having to provide care that conflicts with their beliefs and must be accommodated by employers in most contexts. I'm particularly interested in institutions because that prediction doesn't go both ways. That is, individuals, religious or not, must uphold religious policies where they work, usually as a term of employment or privileges. They are not free due to their individual beliefs to conscientiously provide standard care restricted by the institutions without consequences. So going further up the chain of command, so to speak, this research looks at the religious commitments of the institutional entities that override those of their employees and patients in the United States and what effects that can have on daily medical practice. Here's a glimpse of the roadmap of this talk. For background and context, I'll talk about what makes Catholic health care worth studying, how principalism can be used to frame ethical tensions, and in particular how we came to be interested in the question of patient autonomy in Catholic institutions. Then I'll introduce you to two studies we've done, one qualitative and one national quantitative survey that displays patient understandings, awareness, knowledge, and preferences related to Catholic health care. After sharing the survey findings, intermixed with patient stories from the qualitative data, we can discuss the broader implications together. Some have done studies to evaluate if the religious mission of the hospital enhances care in a meaningful way, and if so, how. Some do research about how religious clinicians navigate moral conflicts with care. I conduct much of my research in collaboration with Deborah Stilberg, Dr. Stilberg here at the University of Chicago, who spoke last week in this series. For some of you who were here last week, there might be some familiar background, but I'm going to go ahead and include the basics of what we need to understand this talk. What we ask is how do institutional religious policies restricting OBGYN care affect daily practice, and what does this mean for patients? Well, more specifically for women of reproductive age, toward whom a great portion of the religious policies are directed. Why the focus on Catholic health care specifically? Those in Dr. Stilberg's talk last week remember that she explained that Catholic health care sector has been growing, whereas the presence of other religions in medicine has been shrinking. In this chart, you can see that Catholic hospitals between 2001 and 2016 increased nearly 8%, and during the same time period, the other religious hospitals decreased 38%, secular nonprofits decreased 11%, and public hospitals decreased 34%, and the only hospital type that increased besides Catholic hospital was for-profit hospitals. However, looking at the share of the market by hospitals is a big undercount. Another way to look at it is by a portion of hospital beds. Catholic health care accounts for 16.6% of hospital beds in United States, and that means that one in six patients will be treated in Catholic hospital. Also, the difference in percentage may be due to undercounting Catholic hospitals that have been sold to non-Catholic networks, but still operate under the directives. Catholic hospitals treat all women, not just Catholic women, but even Catholic women use contraception and abortion at similar rates to the rest of the population and don't necessarily want doctrine circumscribed care. Catholic hospitals, like most hospitals, receive public funding and pay for care, like most other hospitals, through private and public insurance, and not church dollars. The employees and patients are diverse, and the hospitals tend to care for those who live near them and not necessarily those who share the faith. As you can see, the distribution of hospitals is pretty uneven, such that some states have more than 40% of their care operating under Catholic doctrine. The gray states have less than 20%, if you can't see the small writing. And 46 sole provider hospitals are Catholic, meaning that patients may have no other hospital in a reasonable distance that they can go to. Catholic healthcare touches the lives of many people, whether or not they intentionally seek it out, sometimes due to proximity, sometimes due to reputation for care, and sometimes because of insurance constraints or because it's the only hospital in the area. Catholic healthcare really stands out from other kinds of religious healthcare for a variety of reasons. One is that it accounts for about 70% of all religious healthcare. And in contrast, the diverse group that makes up that remainder includes Jewish and a variety of Christian and a few other affiliations. But Catholic hospital policies are relatively consistent, even if the on-the-ground implementation may vary slightly. They must adopt and practice by the ethical and religious directives for Catholic healthcare services, sometimes called the ERDs or directives for short, which are written by the U.S. Conference of Catholic Bishops, and they're available online. Furthermore, while Christian hospitals are known to restrict abortion in certain circumstances based on their religion, Catholic policies are much more expansive, prohibiting abortion in all circumstances, as well as sterilization, contraception, fertility treatment, and other topics that can come up, and you'll hear more about. There are 72 directives, and if you're not familiar with Catholic doctrine on this topic, an overly simple explanation is that the policies and the directives derive from the central belief that sex is only morally legitimate when it occurs between a married man and woman with the intention of creating life in the process. Contraception and sterilization are seen as a violation of the integrity of this process. And facilitating the end of a pregnancy at any point, even during an already doomed pregnancy, is morally equated to a prohibited abortion, with some caveats, which I'll explain. But it is important to understand that undergirding the directives related to abortion, miscarriage management, and even end-of-life care is the idea that no action should be taken to hasten the end of life, whether that life be a zygote and elderly person and everywhere between. So I know that some of you saw these last week again, but I wanted to show you a few directives. In case you weren't here, this is a basic one that says all Catholic hospitals must follow the directives. This is the directive about sterilization. Direct sterilization of either man or woman, whether permanent or temporary, is not permitted in a Catholic healthcare institution. Procedures that induce sterility or permitted when the direct effect is the cure or alleviation of a present and serious pathology and simpler treatment is not available. So there's this kind of caveat. Abortion, that is the directly intended termination of pregnancy before viability or the directly intended description of a viable fetus, is never permitted. Every procedure whose sole immediate effect is the termination of a pregnancy before viability is an abortion, which in its moral context includes the interval between conception and implantation of the embryo. So you can see the implications for some kinds of contraception or an emergency contraception, at least the thoughts on those that still persist. And this is part of great interest to this area of work. This is the caveat about what if a woman is at serious risk during a miscarriage or a pregnancy loss. And it says that she can be treated if you're treating the pathology. And so I included this part below, which is an interpretation, I think, in easier to access terms from an ethicist, Ron Hamill. He says, ethically, if infection develops during pregnancy loss, directive 47 provides guidance. Labor and delivery may be induced. This would constitute an indirect abortion because it fulfills the condition of the principle of double effect. So you're not trying to destroy the fetus. You're trying to deal with the infection. And if the fetus dies along the way, that's the acceptable effect because of the pathology. So those are the directives. So we can understand this in an area of inquiry in many ways. Today I'll have us consider the highly utilized framework of principalism and bioethics. And we can start with beneficence and non-malheasance. Are religious restrictions on reproductive health care helping patients? Are they harming patients? How about considering justice? Do these restrictions disproportionately affect disadvantaged groups creating additional barriers to care? Very little research exists in this area so far. And finally, do they restrict patient autonomy? I'll return to autonomy later as that's the focus of this talk. But for now, I just want to consider the top two in some detail. And I've made this handy chart. You don't have to read it all now. Or you can. The most common argument that religious restrictions are beneficial, unsurprisingly, is a religious one. Policies restricting reproductive health care protect women from having the option of services considered immoral within a religion, in this case Catholicism. As such, contraception, abortion, fertility treatment, and the like are not viewed as part of health care, really, but rather something unnatural. At the level of the individual clinicians, religious restrictions are valued for protecting them from being complicit in such care. And some theologians add an institutional dimension. To this perspective, Dan Solmezzi, a bioethicist and theologian based here until recently argues that beyond being good for individuals, religious policies and religious institutions are good for society more broadly. They enable institutions, sorry, enable institutions to hold a protected moral space and to ensure that policies for the use of modern medical technologies are kept in line with religious moors. Institutional conscience rights are thus seen as a social good. There's much to unpack here, but for now I will just suggest that proponents of the argument that institutional restrictions on reproductive health care are beneficial are considering multiple levels that include the patient, the clinician, and the broader society. And they are in agreement that the policies are keeping a certain kind of evil at bay. Those who argue that religious restrictions are harmful and I will be transparent in locating myself here typically believe that women do best when they can determine their own reproductive trajectory. That women should be able to use safe and legal means to prevent or terminate pregnancy when they feel it is necessary. From this perspective, contraception and abortion are not immoral. Bringing a child into the world is regarded a lifelong physical, financial, and emotional investment that only the pregnant woman can or should decide to make. Going a step further depriving her of reproductive autonomy has negative effects for her sense of self-efficacy in the world, for her children's well-being, and for the larger society in that it re-stigmatizes family planning services that are so highly utilized and so critical for women's lives. At the clinician level restrictions are viewed as an impediment to standard care that the patient wants and that the clinician has a duty to provide, or at least to help her find as a gatekeeper to the limited resource of health care. On the level of society, health services that enable women to control the timing and number of births that she has are considered a social good that promotes gender equity and a healthier society. Pretty basic ideas for this group, but it's important to get at the essence of the disagreement. The very restricted care is seen as the means to public health from one perspective and a kind of evil from another. You might notice that these different arguments don't really speak directly to each other. Perhaps they speak around each other, but their logics regularly employed in the literature and in debate about family planning and the right to restrict care in religious facilities or even in debates about health care reform. Yet you can see these opposing perspectives differ at the level of one's entire worldview. And I just want to make a brief note about adoption, which is often brought up as the escape valve in this discussion, at least as an alternative to abortion. The truth is that the adoption rate is less than one percent of unintended pregnancies, whereas about half of unintended pregnancies end in abortion. Demonstrating that as much as adoption is widely discussed, it does not appear to be widely embraced by women in a position to make that decision. Even in the complex case of miscarriage, when that very decision to have a child is taken out of a woman's hand, research shows that having the ability to choose the course of treatment is critical to her well-being. Among the three options of miscarriage management, which you probably know are expectant medical and surgical. The most important predictor of satisfaction is having the right to make that decision and choice. For those of you not here last week, this relates because a woman miscarrying in a Catholic hospital may not have choices over care if the fetus hasn't died yet or if she hasn't become sick yet, making it possible to justify the abortion or the DNC. Even if her membranes have ruptured and the pregnancy is determined to be over, treatment to empty the uterus would be considered a prohibited abortion according to Catholic theology. Treatments delayed until the fetus dies or it can be demonstrated to an ethics committee that her life is threatened by sepsis, hemorrhage, or a comparable threat. And I've included some examples from our research with physicians for background here for those of you not at the talk last week about how some physicians felt the directives harmed patients. One physician said, if you go to a secular hospital anywhere in the country with the complication of ruptured membranes but say a normal baby at 20 weeks, you a woman would be offered pitocin. That would be one of her options. In my hospital I can't do that. So then I'm aware I'm not exactly practicing the standard of care from a non-Catholic hospital standpoint. As you can see, this physician characterizes the restriction as mandating care beneath the standard practice she'd learned before working there. Similarly, doctors frequently spoke about the directives as restricting what would be safest and most patient-centered. This doctor said, I think in a truly Catholic hospital you just go there knowing you can't practice to the capacity you want. And thus it requires a patient to have another procedure. If you're in the delivery room and you have a C-section, the tubes are right there or the day after a vaginal delivery, the uterus is up at your belly button. Just make a little incision in the belly button and the tubes are right there. They're very easy to tie. Furthermore, doctors were concerned about transparency. Some worried about whether patients understood what the religious policies were or whether the hospital is Catholic. For example, one doctor said, I don't think my patients are aware there are restrictions. The only time that would come up is if you personally had that issue. Most of the time I think it's a surprise. Like when I tell them I can't have, they can't have a tubal. Another points out that patients don't likely don't know during pregnancy that there's a committee involved in the decision to treat. The public isn't aware that if you come in with ruptured membranes, sorry ruptured membranes at 20 weeks, that you do not have the option to terminate the pregnancy, that that's something that has to go to committee. Typically an ethics committee has a clergy member, a medical member, maybe an administrator. So in light of physicians' concerns, we wondered how well can women identify if their hospital is Catholic or what that might mean for care. While the names Mercy and Providence might be recognizable as Catholic to some, hospital names such as Lakewood, Peace Health, Dignity do not necessarily convey that care is religiously restricted. These two studies were interested in this question and were innovative in assessing the transparency of religious hospitals on care. In the first, Miriam Gyahi's team randomized 236 women in Denver to two hospitals, one called St. Ignatius and the other called Metropolitan, and asked them what reproductive services they expected to find in their hospital. The majority of respondents in both groups expected to be able to get all of the reproductive health services, including the ability to end a pregnancy for any reason. And in another study, also by Miriam Gyahi's team, the researchers analyzed Catholic hospital websites and found that none listed any restrictions on contraceptive services. Between what the physicians told us and what Gyahi's research indicated, we wanted to dig deeper into this question of transparency about religious restrictions. We wanted to know to what extent women are aware of the religious affiliation of their health care, informed by how and how informed they are about how religious health care might differ and how able they are to access other care in a timely and dignified way. So from after doing the physician interviews, we went on to conduct patient interviews and then a national survey. And in the summer, we will begin phase two of the patient interviews. And today, and I'll just mention that I also do am doing ongoing interviews with ethicists who worked in Catholic hospitals. And today I'm going to focus on these two studies that Dr. Stilberg and I are working on. So in phase one, oh, sorry. I just want to also mention that we haven't published any results yet from the survey. It's really brand new. And so I'm just going to share some of the analysis we've done. So in phase one, we conducted 22 exploratory in-depth interviews with women who had experience seeking reproductive health care that is in Catholic facilities. And then we split the research into two phases, because the first phase of qualitative interviews was helpful for informing the design of the survey. But it wasn't resulting in a sample as diverse as we wanted. So we paused to allow the survey to take place. And this summer, we're going to recruit from 881 survey respondents who said that they'd be fine with being recontacted for an interview. And we'll fill that sample out more completely. But today, I'm going to draw on the 22 respondents that we have from phase one and show how they can illustrate some of the survey results in a meaningful way. I won't go into the methods at length here, but feel free to ask me any questions after. So I'm a sociologist, as you know, and primarily a qualitative researcher. And I was delighted to be able to work with Dr. Stilberg on this research. She has extensive survey research experience. And our aims were to assess whether women can identify the Catholic affiliation, understand the implications, and again, create that sample. Writing a survey to assess knowledge and awareness is a tricky business. You want to know what they know without telling them. So we developed the survey advised by experts at the University of Chicago Survey Lab who tested and conducted cognitive interviews with the instrument. And then we fielded it to Norc's Amerispeak panel. So the survey starts by collecting respondents' reproductive experiences, which services and healthcare facilities they use and how they make that decision. Then we move into a fictional vignette slightly adjusted from Miriam Gyahi's study. We renamed St. Ignatius St. John's to make it simpler and clearer. And to those unfamiliar with St. names like I am, or had been until now, I didn't really know how to say Ignatius. I didn't know if people would definitely know that meant a Catholic hospital. And we wanted them to really have the best shot at knowing that was a Catholic hospital without telling them so initially. And because we're trying to replicate the real life experience of going to a hospital when you don't look up their religious affiliation. We kept the other one named Metropolitan. And then we randomized our group of respondents to St. John's or Metropolitan and asked them what services they expected that they could receive along very similar lines to Dr. Gyahi. At the end of the section, we asked them directly if they thought St. John's or Metropolitan had a religious affiliation so that we could know which was also different from Gyahi's study where it was sort of inferred. And so we wanted to be able to see if what would be predictors of getting it right. In our third segment of the survey, we asked questions to gauge their preferences around religious policies for care, sort of opinion questions. But we didn't want to bias them, so we left them all to the end. And we waited until this point to ask if the hospital they mentioned earlier in the survey had a religious affiliation. And if so, what? So 1,430 people took the survey. Let's see what we found. So just to start, this was our write-in question. We asked them, thinking about where you live currently, if you needed an OBGYN or you needed reproductive care at a hospital, what hospital would you be more likely to go to? And then have them write it in the hospital name, the location, the city, and the system if they knew it. We then checked responses with a rigorously researched current list of hospitals governed by the Catholic Directives. And the list is compiled by a non-profit organization called Merger Watch that tracks Catholic health care growth, among other things. We used their list because it includes hospitals that have been sold, like I told you before, to non-Catholic entities. They might not be a member of the Catholic Health Association, or they might not have a listing as a religious institution in the Medicaid logs. But we know that Merger Watch did the research to find out if they're still being run according to the Directives. Are they still governed by Catholic doctrine? So these are non-weighted responses, and we found that 17% of our sample named a Catholic hospital as a place that would be most likely to go for care, which is very fitting. That's close to the percentage of hospitals in the U.S. that are Catholic. And so we also asked why they chose that hospital in particular. We asked everyone, of course, about their primary hospital. And while they could check all that apply, we followed up by asking them what was the most important reason. And you can see what we found the most common important reason was quality and reputation, second insurance, third the particular doctor works there, fourth location, fifth specialty, and religion of the hospital was less than 1% as the most important reason. Although 13% or so of the respondents did indicate it was a reason when they were able to check as many as they wanted. When asked if people had other hospital options, many responded that they had no reasonable choice based on cost or insurance or distance. So about 34% on cost insurance, 31% on distance. Interestingly, that number goes up for the respondents who said their primary hospital is Catholic. So now we're going to move to part two of the survey. This is where we replicated Yahis Vignette with some minor changes. And our Vignette read, imagine a woman just moved to a state. She learns about a local hospital called St. John's or Metropolitan. She needs pap smear, so she makes an appointment to see her OB-GYN who works at St. John's Metropolitan and to see them in their women's health clinic. And then we remind them, answer each item remembering this is about a hospital and clinic named whatever in another state, not any hospital you know by that name. So part of why Yahis team had chosen Ignatius was there aren't that many hospitals named Ignatius, so they wanted to make sure people weren't biased by their own experience at a hospital. But we decided to go with St. John's as a very common name to make sure they truly knew it was Catholic. Well, they had the best shot at knowing it was Catholic and asked them to make that observation themselves. So we asked them some outpatient related questions first, you know, would you expect your OB-GYN to prescribe birth control pills, advise you about natural family planning and a long list of services. And then we asked, we actually continue the Vignette, the woman likes a doctor in clinic and decides to continue there as a patient. And then we ask a series of questions pertaining to hospital care. If the, and today I'm just going to talk to you about this one because again, it's really in the analysis. If the patient wanted or needed it, would you expect St. John's or Metropolitan OB-GYN to perform a tubal ligation? Okay. Just to give you a sense that the survey also talks about asks about abortion in a variety of circumstances, asks about infertility treatment, miscarriage management, prenatal care, birth, a mix of reproductive services. So we found 60, okay, among women who correctly identified St. John's as Catholic, 67% of the women thought they could get a tubal ligation there. And we did an analysis of anything predicted this age, religion, education and region were not predictive. So being Catholic was not predictive. It might be some sort of hard for people to understand that a Catholic woman wouldn't know that St. John's wouldn't provide these services, but this is where the qualitative data is somewhat illustrative. For example, I interviewed a Catholic woman who tried to get a tubal ligation from her urban Catholic hospital. And she explained, when I was going to get my tubal ligation, get my tubes tied, I called another hospital. It was a Catholic hospital in a Northeastern city. I grew up in that face. So it was kind of a connection for me. You know what I mean? I figured a tubal ligation, that's not terminating a pregnancy. It's nothing to be frowned upon. Surprise to me, it was. So in this, you can hear that she understood that the hospital was Catholic and that a Catholic hospital might restrict abortion, but she didn't have any idea of the broader reproductive policies, specifically that a sterilization procedure would also be restricted. Interestingly, it was the Catholicness of the hospital that drew her that familiar connection. In another interview, I spoke with a young transgender man who had scheduled a hysterectomy with his mother's trusted physician. Like the previous patient, he was going with what was familiar. But the case was abruptly canceled due to the religious policies. The patient was unclear this could become an issue until it was. He detailed an interaction he had with the pre-op nurse who had called to give him instructions. The nurse asked which procedure he was having, why he was doing it, and even after explaining that it was a gender reassignment surgery, she wanted to know why. He felt the conversation was awkward and too personal. His doctor didn't anticipate it would be a problem. He just didn't view the hysterectomy as a prohibited sterilization because the patient had already had his breast removed and had been living for a man for a long time had been taking hormones with no intention of ever bearing children. While one might assume the objection was related to the transgender aspect of the surgery, that's not technically the problem in the directives per se. So I asked him after he told me a story and did anyone mention that that hospital in your city that your doctor usually goes to was Catholic? Was that a concern or a consideration? And the patient said, I actually didn't think about it. After my doctor called me to let me know what the hospital said about the surgery was when I thought, oh, this hospital is called, and then he listed a vaguely Catholic name, which is a Catholic hospital. I didn't think about the whole religious aspect of it. I had no idea. It just kind of dawned on me when he called to let me know that the nuns at the hospital had rejected my procedure. So the rejection was not a technical one. I mean, I'm sorry, was a very technical one. Sterilization wasn't a loud period. The doctor rescheduled the surgery in a non-Catholic hospital not too far away and was able to complete it. The next patient story I want to share is a bit longer and it displays significant confusion around the religious policies. I spoke to a woman in the southwest with two kids already and she was living in a homeless shelter due to domestic violence. She tried to get an abortion from a Catholic hospital. She went there because her friend told her they were very helpful with finances when you're uninsured. They said that the friend said that she could get set up with Medicaid there. They could help you finance the care. However, her friend didn't go for an abortion. She recounted, I was wanting to get an abortion and they really didn't want to do it. I mean, I guess they performed them there before from what I've heard but I had got because I'd gotten a referral there through another lady but you know they wanted me to look into adoption and you know saying that there are families who can't have children and that I should meet with someone. So I did and stuff but I really didn't want that. If I was further along I would have considered adoption but I was only like a couple of weeks. So they did ultrasounds and had her meet with adoption counselors. She came back for four different visits the whole time pretty sure she wanted an abortion but she thought this was what she had to go through first. She didn't exactly understand that because the hospital was Catholic they would never provide the abortion no matter what. If she had, she said she wouldn't have gone to four appointments. She said, I don't want to have like just some kid floating around out there that I never get to see or why'd you abandon me and I was wondering like what if because I've been sexually abused and when I was younger so like you can have issues you know like if you just kind of abandon it you know and you don't know how life is going to turn out and stuff. So as you can see she's dealing with a lot. She's homeless, she's experiencing domestic violence and she has a history of sexual abuse. She went on to clarify that the pregnancy was not intended. She'd been relying on condoms because they had no health insurance for birth control. She thought all of the appointments and counseling was a process that preceded the abortion or that would perhaps earn her access to the abortion. She continued, it seemed like if I was going to do the abortion that like I should have at least gone through the steps that they wanted me to. If that's the conclusion we were going to come to at the end they would talk and talk and talk and the baby's just getting bigger and it just kept feeling more wrong you know like they were looking for a certain outcome and just didn't think we were having and I just didn't think we were having a meeting of the minds of what I really felt was right for me. When she finally determined they were never going to provide or help her get the abortion anyway she found Planned Parenthood. She dreaded going there because she knew about the protests outside the clinics and didn't feel safe. Once there Planned Parenthood counselors told her about financial resources she could get if she wanted to have the baby but she decided she needed to terminate for reasons beyond her own poverty. Toward the end of the interview I pressed her a little to try to clarify her level of understanding of the religious policies of the hospital. I asked okay when you were calling the Catholic hospital because your friend said you should go there did you know at the time that it was Catholic? The patient said no I didn't. Well I might have thought it was kind of a little bit because of the saint being in the name but then sometimes they just use that because they're hospitals of course you know they so they want people to feel safe. Okay so for this patient the religious hospital name meant we want you to feel safe here. It didn't necessarily mean to her you won't get an abortion here. So from here I want to take us back to the survey data away from Storyland and we were able to quantify the awareness of religious policies in a second way beyond the St. John's vignette. In part three of the survey we asked all respondents whether their primary hospital that they had written into question two of the survey had a religious affiliation and what it was. We delayed the question until after the vignette because we didn't want to bias it. So we broke out the 17 percent of the people whose primary hospital is Catholic and we found that only 65 percent of them knew that it was Catholic. The other 35 percent didn't know. Most of them thought it was secular. So then we moved from there to assessing preferences and we learned something interesting about how you ask preference questions about religious restrictions. So first we asked them how important is it for you to know what the hospital's religion is when making decisions about where to get care. And 11 percent said very important 24 percent said somewhat important. So about a third. Then we asked by giving them first a little information some hospitals restrict some OBGYN and reproductive care because of the hospital's religion. How important is it to you to know what care is restricted before you decide where to get care. And that changed things. Then it was 52 percent very important 28 percent somewhat important. So letting them know that some care is religiously restricted really changed their interest in the religiosity of the hospital. Much like my qualitative interviews I'm guessing some of them thought the religion wasn't about the actual care. It was about feeling safe. It was about being inviting. I mean in terms of policies. So toward the end of the interviews we would ask patients questions to assess their opinions. I'm going back to the qualitative again their opinions of religious policies and religious health care if they hadn't already made them clear. And I found that while patients might have been surprised that certain services weren't offered they tended to be more surprised about things like denial of contraception or serialization than abortion which isn't terribly surprising given the intense stigma and controversy around abortion and how highly segregated abortion is from most other medical care. One patient said it's not them that's going to have to raise the baby or you know I mean I can see them not wanting to do an abortion but if you have to if you want to have birth control or female sterilization or male sterilization that should be a choice that's readily available to you no matter what kind of facility you're in. Another said I don't feel like they a hospital that has religious beliefs should be able to dictate what services they provide based off their religious beliefs because I'm in need of your care. That doesn't mean that I have to believe what you believe in order to be helped in order to be cared for. If it has something to do with how the hospitals represent themselves publicly I completely understand that that's your funding. That's all of that. I completely understand that but how you treat people and how you care for the patients it shouldn't have anything to do with that. This patient seems to highlight the idea of the fiduciary relationship of the health care providers she indicates that she expected the religion of the hospital to be more of an image than a doctrine something to help raise money but that fundamentally health care providers shouldn't deny services. She also captures how patients don't really anticipate that hospitals differ that they could restrict based on religion at all. There was a certain uniformity in options expected as a duty or an obligation to patients if the hospital was open to the public. So in summary a third of U.S. women cannot identify their own hospitals sorry Catholic hospitals affiliation. The majority of U.S. women of reproductive age do not know about Catholic hospital restrictions and qualitative findings suggest women assume some type of duty to provide full scope care. The vast majority of women want to know about religious restrictions before they decide to seek care. So this research brings up many questions about how awareness autonomy informed consent and access to reproductive health care relate to each other. How can patients have autonomy in this context without information. At what stage do patients need to be informed. Should facility policies be able to limit information to what they consider morally legitimate options or should it be all options. Catholic health care leaders have at times responded to their critics. One response I want to share with you is from Ron Hamill a senior ethicist at the Catholic Health Care Association. He wrote this article. Is it going to show up. Oh there it is. Okay about early pregnancy complications in which he directly addressed our research on the topic and the ACLU's lawsuits on behalf of women who had been denied timely miscarriage management at Catholic hospitals. In the article he gave detailed instructions and interpretation of church teachings in regard to a topic pregnancy and pregnancy loss scenarios basically explaining how and why the directives work as they do and not suggesting other practices. But what interested me most was his attention to informed consent. He argued to readers that Catholic directors encourage informing patients so that she has a full she has full medical and moral information to inform her conscience while recognizing that not all will agree with his perspective within Catholic health care. He says well some will disagree the full disclosure of medically appropriate and indicated options factually of relevant information including direct abortion in difficult obstetrical situations can and should occur with within certain parameters. Interestingly adds for the sake of trust in Catholic health care. If physicians in Catholic hospitals were to routinely and systematically refrain from disclosing factually relevant information to what extent would that weaken the trust of patients. I'm sorry the trust patients have in them and the health care professionals that practice in Catholic facilities. So while Hamill addresses here the issue of informing women of options that might not be available in a Catholic hospital specifically induction of labor or DNE before the fetus has died during a miscarriage. He doesn't directly address the upstream question that is if a woman knew that a hospital was Catholic or even more specifically that her options were restricted in a Catholic hospital would she go there at all. Still I appreciate his willingness to open the discussion within his field and community about Catholic health care how it could be more transparent. So I really want to thank the McLean Center and the Department of Obstetrics and Gynecology and CI3 and especially Julie Kor for bringing me here and organizing this talk. So thank you very much. We're going to open this up to questions. Lucy I see your hand waving. Lady in the red. I just wanted to ask were you in the selection of the name were you trying to pick one that was polar or like kind of you know mixed or unclear in the like selecting St. John's. We tried to be very clear. We were hoping to be very clear. Did we achieve that as a Catholic. No I mean I think that I don't know I'd be interested. I can't remember whether you said what percentage recognized or reported St. John's as Catholic versus what you saw with like their own hospitals because like St. Ignatius is a very like only Catholic St. You know in terms of my understanding versus like other like St. John could be Lutheran could be Episcopalian or the I mean not not it was one person but it could be interpreted as some other kind of Protestant. We gave so much thought to this question you would not believe it but we didn't think of that. Yeah we were really we yeah we were really thinking about people who didn't know anything about Catholicism and whether they would recognize the name Ignatius which I know in Chicago probably seems really silly but I am from California and I've never seen that word and so I I just thought well I want someone to just be completely I mean Debbie and I so then Debbie and I searched that sorry Dr. Stilberg and I scoured the internet for St. Catholic St names that were not overly used in Catholic hospitals so that you know that people wouldn't confuse it with their own care and then we reverted back to let's pick a very common St extremely common but that's that could be the problem well it could be I guess if you were Catholic and you know a lot about Catholicism that's interesting but what was the percentage that recognized it with that versus we didn't because it was 65 for their own right actually I want to say that the 80% of the people who were randomized to St. John identified it as the oh yeah okay good that was in here okay and the 60 that you're remembering it was 67 percent didn't and 67 percent thought that they could get a tubal 67 percent of the people of that 85 percent who knew it was Catholic they knew that population knew it was Catholic so I think we kind of dealt with it okay because if 85 percent definitely got that it was Catholic then anything within there is knowing that it was a Catholic hospital and that was the difference between the Geahi study in this one is that we did verify at the end of the vignette what affiliation did you think this hospital was instead of try to guess based on their responses if you really wanted to be clear why didn't you just call it St. John's Catholic Hospital well that's a really good question this is and this was the dance we were doing we were trying to be just as clear as a typical hospital would be they don't say St. John's Catholic they say just St. John's mercy providence so they don't tell so we were trying to be just as yeah just exactly mimicking the experience of someone just walking in so I threw something like this at Debbie last week and I'll I'll do it again this week if I was a Jewish guy who owned a deli I would feel like it was a restriction of my religious freedom to be forced to serve people pulled pork and just because that's what they wanted or just that's because that's what my employees wanted to serve I would still want to have that freedom okay well that's getting right at the fiduciary question it's sort of is healthcare different somehow than a deli is the question if you get public funding and you're taking up a spot of our healthcare system is it different and if and if a person is in a critical situation sometimes life and death sometimes it's just uh so I understand a critical situation is different yeah but I'm getting public funding as a Catholic institution I'm not hiding that I'm a Catholic institution and still the public is agreeing to fund me well um this is exactly what we're interested in are you hiding it I mean the question is uh so are you hiding it because the I like the there's the research about websites there's no information on the websites there's been a lot of name changes um Alexian brothers became is it a Vita there's Catholic Healthcare West became dignity health there's a lot of de-Catholic de-Catholicizing of the image to be more generic but the policies are still written by the bishops so patients may not know that I'm Catholic but whoever's funding me knows that I'm Catholic ah okay so then the question is what is what is the what is the um duty of our healthcare system to decide where the money goes right and this came up last week too as maybe Catholic institutions shouldn't be publicly funded uh I mean I think that's a big of the big ask but it's interest I mean it's a big such a big part of our system at this point yeah hi I don't wow this left um I was just wondering in the statistic you gave where you said the people who had identified a primary Catholic hospital were less likely to know of a secondary hospital um does that correlate with the availability of Catholic hospitals as opposed to secular hospitals like are they more common in uh rural areas or something that's a really good question I cannot say we've done that analysis yet but that will be one of the things we should control for region well was reached no we haven't controlled for region yet for the access thing is the second choice of a hospital yet yeah so thank you I'll add that in I mean in part I don't know the answer yet to that question because there's just um we need we probably just need to know more about where Catholic hospitals are in that do more background work on that as well as control for region thank you for the great presentation it seems to me there are several layers of ethical questions that are built into this it seems that this survey most gets at what you just said is kind of the primary it's more do Catholic hospitals have bad pr are their websites just lousy or is it you know is it an active kind of thing I mean having worked with a a lot of websites at hospitals my general presumption would be no they're in fact just lousy I mean and and you know ours right here says inaccurate things about what I do and so it seems to me that wouldn't have to and then apply intentionality you'd have to do a different kind of thing to look to see and and again it is plausible a hypothesis that in fact for market share for the reasons they have done that and and again that might be different within the institution there may be a marketing team that's doing that where the directives people have no idea you know they're like oh they got another member we changed her name again you know I mean it would seem to as an ethicist that would be important that if the the marketing people are doing it to trick people you know for ethical reasons or just to get market share that would be it seems to me an important question from the institutional point of view and I think that you're touching on an important tension within Catholic healthcare right now and probably for last couple decades is you know in this really period of really high growth and fierce competition honestly there are the market-minded people running Catholic healthcare and then there are the mission-minded people running Catholic healthcare and they're not always on the same they don't always have the same agenda and so I do think there is some tension and some disagreement there and that's true at a lot of institutions I'm not just Catholic ones that the I mean in this institution you just talk about trauma center which we won't but I mean like you could you could have that same kind of you know or if we have midwives deliver you know I mean that kind of thing is inherent to all hospitals and institutions it seems to me the other thing about that that I wondered specifically is do you have numbers about those who knew it was a Catholic hospital and could distinguish and say yeah they don't do abortions we know that but then didn't know about the tubal because you just you will have those numbers yeah because that would be an interesting question if it's if there's a big difference between those two that means that the Catholic PR about abortion is good which is not a good about contraception right that makes sense right no it does thank you we will have those numbers I'm sorry jumping off of Peter's question I I do think intent matters when it comes to the way the hospital is portraying itself but it's not the only thing that matters I mean I think part of what Lori's talk emphasizes is if it is true that the average woman facing the average circumstances or even looking at sort of a normal range of circumstances in picking where you go for health care doesn't a doesn't have choices so back to your point about you know is it rural location or distance or insurance restrictions um or has restricted choices or frankly just restricted time to make a choice right like you're taking time off work and you need to go get a new OBGYN who's going to write your prescription for the pill and it's kind of frustrating to show up to one that you thought you were going to get that and you don't so any of those circumstances then I think the question that's equally interesting to intent is whose responsibility right and what to what extent do we hold the public responsible for digging really hard to find more information to what extent we hold the hospital's responsible should there be a third party whose job it is to just you know distribute the unbiased information that everybody can access I mean that that to me is kind of the next step down of what do we do about it hi Lori um I know that your research and Dr. Stilberg's research is focusing on reproductive health but I'm just curious if you know of other research that's being done about other health care practices that are religiously driven just to count that into that it's the practice of the care and not necessarily always the marketing but sort of that intent question but is there any other research being done about end of life care or any other practices that might be also different because of the religious affiliation you know the primary ethical issue that I'm aware of being outside of the reproductive health issues is end of life care like you mentioned and I am not aware of current research are you can't think of something even though it comes up always I've done a little bit of interviewing about it it comes up quite regularly huh psychiatric care yeah there are a few end of life questions I think in the curling survey the large survey but I haven't seen much more related to the physician yeah yeah the physician of experience of it right yeah conflict and that kind of thing yeah um but I do think it'd be a rich area of research um it's a little yeah I don't know I don't know whether um how how rich the area of research would be because I don't know if it's more um I don't know how the problem of not having one's advanced directives to not want food and water that's what we're talking about in 2005 they added a directive saying if a person says I do not want food and water they must still give them food and water at the end of life in a Catholic hospital um because it the bishops um decided that food and water is sort of the essential essential life prolonging and to take it away would hasten death um so that that directive happened and there was there's been a lot of interest I just don't know yeah right um so I might I don't want to key in too much on one specific aspect of a very big topic but in particular you know you I think it was Ron Hamill was the SSU side at the end so what he said about informed consent to my reading actually directly contradicts one of the ERDs which says that informed the that full uh to paraphrase full options must be given provided they do not contradict Catholic teaching right um and so uh that and the other one that that I think is interesting in light of tensions between individual provider conscience and especially um conscientious provision um is there's there's something that I again I'm paraphrasing but not by much that says um it does not offend individual conscience to restrict care that that is contrary to Catholic teaching yeah full stop and that's and so I guess I guess my question is um that to me either highlights that there is variation in that interpretation some of which might be um authoritative and some of which might not be he's not a bishop so I would suspect in the Catholic setting it's not authoritative or it possibly highlights the fact that people even very well intentioned people in the leadership of these institutions don't realize that these are actually problems that patients face um what do you think about that I think that he's very I mean this comes at the end of this incredibly detailed article where he actually itemized my research Debbie's research um the specific cases and that the ACLU has tried um so he was super very aware and then goes through and applies the directives teach site case so I think this is a very aware person very knowledgeable and actually I think he was trying to start a conversation and maybe push push them a little maybe maybe this is how things change very very slowly is to say um look at this idea this is a legitimate idea and maybe it's maybe I'm being overly optimistic but maybe that will trickle into something has there been a response to that and where was that like how was that it's in the prime it was published in a few locations honestly but they're all Catholic healthcare journals primary you know resources in Catholic healthcare and have there been any like letters to the editor any responses that you're not that I'm aware of no I mean I don't I actually there may be I just I'm not aware thanks for a really informative discussion um you mentioned in your agenda that one of the next steps down the road was more provider or physician based qualitative interviews I may have missed that or I think that was there as a cyst okay okay well although I wouldn't yeah then I was curious about data that might be available about what I'll term sort of the the hidden practices within Catholic institutions that are either provider driven the example I remember in training was the frequency of hysterectomy as a surrogate for tubal ligation and I'm just wondering about that what's the awareness is it continued to be a real issue it's clearly not directly related to the doing the sort of the right thing in the context of of reproductive rights and choice but I'm just curious about what the prevalence might be and if anyone's interested in getting at that information so number one that is something we've done a lot of research in qualitative way about and Debbie presented some of those findings last week but they really really interesting practices around yeah um we heard terms like well these are kind of older older terms in the past people used to say oh she has a really tired uterus let's take it out or let's do it a uterine isolation and these were like words to not say we're doing a sterilization and somehow those would fly by okay and even the physicians we interviewed um in 2011 and 12 um a lot of them remember having more permissiveness around tubal ligation they said oh and I took this job 10 years ago when I took it 15 years ago people told me I could get these these approved if there was any health problem just you know anything and um and then that then they crack down on that and I've been reading a bit of history and it looks like there really was a movement within um just within the catholic leadership and the bishops to crack down on these excessive tubal ligations um it just at the very highest levels and trickling down through our through departments some people saying oh our department chair in our interviews our department chair came and said you can't do that anymore um so we we call them workarounds um in our data and we we love we love to sort of look at the different ways that people talk about it but I think we need to do a survey to because you can't get a prevalence in the qualitative studies just range so thank you lori this was really interesting I love um that you're looking so closely at what patients know and understand and my question for you is whether you and debbie or anybody else that you know of is thinking about figuring out a way to understand what patients understand about um hospitals that are otherwise secular hospitals but that follow the erds because of some sort of a business arrangement or agreement a purchase agreement or merger agreement with a catholic healthcare institution and what do those patients know and how do they understand when you can't use like the name as the proxy for what their experience will be at the hospital you just gave me a really good idea um because if we look at our list of the 1200 no of the 213 catholic hospitals perhaps we can sort of adjust for transparency or sort of create columns of different levels of transparency and see if there's differences kind of is that what you're saying because some some of them probably barely look catholic at all and are not named so but still operate is that what you're talking about yeah right so you go to your community hospital you think you can get whatever care and in the end they turn you away when you're miscarrying because they follow the erds and whoever would have known um because they're not even a catholic hospital yeah yeah and like the 16% who were seen or where their primary hospital was catholic and they correctly identified that did that include the mergers through merger watch or just the catholic hospitals correctly identified their hospital included all that was the master list that was the everyone who is run by the erds um whether they're currently owned by a catholic healthcare network or not merger watch that's what merger watch merger watch is most current list yeah they really did a lot of work tracking down the hospitals this is an awesome data set so i'm really excited for you guys do this analysis it's really it's really important and good in terms of like the the fact that you have the you know the there was the merger watch map that showed that in different states there's like like washington and alaska are like approaching half of all hospitals um you have this you know map with different kind of market shares or thresholds of seepage of you know controlled by religious health systems do you have any hypotheses or plans to do like in terms of whether people's knowledge is also connected to those different levels because you do it is nationally representative right so you could saturate kind of yeah to see whether it actually makes them black you know more knowledgeable or not yes fascinating definitely um we've talked a little bit about um testing it by saturation level and i think it's interesting it just happens to be interesting to me about washington state because i don't know what the the level of the catholic population is in washington but i'm anticipating it's lower than other places yet there's higher maybe i'm wrong yeah yeah but um if it's lower and the saturation capital hospitals higher be interesting to see like versus another place whether anyway with the place like alaska i mean there's a whole host of other issues that that creates because of just the number of and access in general access absolutely uh hi thank you so much for your talk um i just had a question it's kind of a specific question but i was surprised at your finding that um that religion and education were not predictive of whether people knew about the nature of their hospital i guess i was just wondering did you have any qualitative interviews um where the person hadn't been surprised or had been aware of it and um and if there was if you had any kind of preliminary idea about why that would be maybe you know politic political ideology or something like that what were the factors that would make someone more aware right if someone if someone if someone wasn't like you know who was totally aware and like you know maybe that that was at 30 percent or smaller but who were aware of of the restrictions that how catholic hospital might have like what did you do you think there is any kind of predictive the one the one i'll tell you what's really predictive is working in the hospital i had a couple people who were like you know had some level of employment in the hospital didn't mean they knew all of the the but those are the people who i felt were the most knowledgeable um or they worked in health care to some extent they had just a little bit more insight about it um but i don't really i don't know what the predictors would be and i don't know yeah doesn't come to mind any real revelations about i mean i guess yeah some people who had a fair amount of knowledge about Catholicism would definitely anticipate the abortion restriction you sort of heard that a little bit like i couldn't understand abortion but they um were frequently surprised about other things so in the medical model we rely on the provider to do the informed consent but when it comes to an institutional level like this the information doesn't necessarily need to come from the religious religiously affiliated institutions themselves i mean market watch or um the bixby center or you know anybody could mount the public information campaign to say you know uh your rights are limited if you go to these places check our list before you you get health care yeah i mean maybe i don't know florie wants to speak to that i mean there are a lot of different kinds of information campaigns going on i think that's um one at one approach and this is lory chaton from the clu it's involved in some levels of information so i don't i do know that there is some looking at that sort of thing and obviously even the work um that um lory and debbie are doing and others to get the message out there is helpful but i guess i would turn back to you and ask when the patient comes and isn't aware and isn't given full information about her medical circumstances and treatment options um doesn't that undermine or violate the ethical obligations that a physician has to a patient to make sure that she is making an informed medical decision so it's not enough for a third party to have the responsibilities they don't go there because in the end they're not going to get to everybody and in the end we know the patients do go there they don't know the limitations and they are sent away without full information of the kind that hopefully they would be getting for example here at the university of chicago or they don't necessarily have a choice yeah right so you know for those women who have this one institution and now they know that they you know that these options are restricted or some options may be restricted but there isn't necessarily a transparent discussion at the doctor patient so i just for clarification are you saying that it shouldn't like the the physician doesn't have to have a does not have a responsibility to review all these options or i'm just a little confused are you saying that the the provider shouldn't be responsible for having some full disclosure you know ideally the provider would but if it's a matter of you know what's the most cost effective way of getting a result it might be more cost effective to put a list of catholic hospitals on buses they're going around the city than to try to convince saint ignatius to really disclose you know uh you you know what they do and the the restrictions they put on their providers maybe you do want to talk about that though because aren't you kind of working on a disclosure well yeah i'm going to talk about the disclosure thing or did yeah i mean the disclosure law and what happens yeah i mean but the law the law that past has to do with um what a healthcare provider institutional or individual because that's how the law Illinois law defines healthcare provider has to ensure that the patient knows and so again i think you're this isn't a bad idea that you're suggesting but i don't think it's a full proof idea and i think that there are patients who you know will go anyway i think that julie's comment about having not having a choice there are people who's the only hospital in their community is one that lives under the restrictions whether it's because it's a catholic hospital or because it's a secular hospital that follows the erd's people's insurance networks limit them they're all kinds of limitations and so unless you happen to see the sign on the bus and then made your decision about what insurance to get that maybe your employer offers etc etc i mean it's complicated and ultimately we trust our healthcare providers to give us information and to um have our best interests at heart when we come there for care so hi um really enjoy your talk i guess i was just wondering the erd seemed to be sort of the sticking point in terms of uh the root cause of the limitations on care and those you said came from the the bishops has there been any changes as a result of pope francis's work in terms of uh creating maybe a more liberal catholic interpretation a short answer i don't know of any change anybody else know of any change i mean i maybe these things take time or maybe there won't be any change right because it's also written by the american bishops yeah i don't know how i don't know on the ground like how much the you know how much the change at the top sways the change at that level it's hard or whether i mean there was a lot of controversy in the initially they that the us bishops were not very pleased with the liberalization in pope francis's way of speaking about maybe we shouldn't focus on abortion so much so i don't know whether they're on the same page or not i mean i'm sure technically they are but i mean officially they are um but i don't know you know but this is definitely out of my wheelhouse honestly um me a little more theologian in the room um so one of the things that our institution sort of has a pulse on right now is being a trauma center are there any restrictions about whether a catholic affiliate hospital or catholic hospital can be a level one or two trauma center i just don't know if there's any policies about this because i can imagine if a woman is hemorrhaging from a miscarriage and she calls 911 and the ambulance brings her to a trauma center if that trauma center happens to be catholic but is there any other restrictions about this let me clarify if there's trauma then they can do it so if she has a life if her life is threatened by hemorrhage then the ethics committee would approve it quickly i think unless there was a malpractice problem or a bad interpretation though the interpretation of that i mean we've had a case where um we cared for a woman who was at another catholic institution um who was hemorrhaging um and she had to be eventually transferred here so i think that there is a lot of room for interpretation because there was cardiac activity and this gets back to debbie's question of responsibility because the bad cases that we hear about in the news sometimes if you really look closely they could have treated but they didn't interpret correctly so then whose responsibility is it to improve the interpretation part because the bishops issue the directives then you have the ethics committees implementing and then you've got the doctors below them trying to make quick decisions with ethics committees approval and there's just room for human error slash uh well of course there's always room for human error but um but yeah there's room for i guess misinterpretation and i would say also the issue with the trauma centers you know then the challenge is in regions that would otherwise not have a trauma center um to withhold having a trauma i mean there's so many you know it gets very very dicey um because then that also becomes a it's like a justice issue against a justice issue so it becomes quite challenging and then there's the whose responsibility is it and is it do you go up one higher i mean is there a way that the u.s. government has a role in ensuring um equal access sorry who do we expect to do the informing um i i sometimes feel like we in the reproductive health world need to acknowledge that when we get obsessed about access to reproductive health care we need to start from the standpoint that access to to health care in our country is not so great is not guaranteed we don't have um the right to information about how to get good health care anywhere so in a lot of ways i think what we're asking is um do we expect access to contraception and abortion sterilization to be as bad as everything else or is it okay that it's worse and is it worse um because i think uh and again acknowledging that we may be holding to some hypothetical standard that just doesn't exist in our country i do think there's a real role as well for stigma and the public attitude that if women have to work harder for these services that's kind of that's kind of normal that's kind of okay that this are these are sort of separate things that you kind of have to work a little harder to find and so i mean again i don't yes we are we are advocating for good public information um but i think that's in a backdrop of already sort of uh higher barriers i think the access question is is huge but a lot harder than just the awareness question