 Our next speaker is Alexia Torqui. Alexia is an associate professor of medicine and the director of the Fairbanks Fellowship in Clinical Ethics at Indiana University. Alexia studies patients' preferences for end-of-life care with a particular focus on surrogate decision-making for patients with impaired cognitive function. This is a line of work that Lexi has developed herself and very fundamentally important in the field of surrogate decision-making. Today, Lexi is going to talk to us on the impact of religion and spirituality on surrogate decision-making. Lexi Torqui. Thanks, everyone. It's great to be here today. This is kind of a new area that I've delved into, which is the impact of religion and spirituality. Of course, I had lots of ideas and things to share, and I thought about an hour of slides. I really had a hard time cutting them down, but I've managed, and at first I thought I'd just get the hook or kicked off the stage, but now I hear I'll get a hug, so maybe I'll just go back to my hour-long presentation. We'll see if it works. At least I can see the slides, so even if you guys can't, I can hopefully say something intelligent. I'm going to start off by acknowledging my team. And also, apparently I have a conflict of interest because my life partner works for a medical technology company, but I assure you I don't use mass specs or liquid chromatographs in my own ethics research. So I'm going to start off with a case, which I'm just going to kind of describe for you. So it's the case of Ms. R, who is a patient who's admitted to the hospital. She is critically ill. After a couple of days, she becomes septic and then develops cardiac arrest. Three days later, she is unresponsive and the medical ICU team sits down with her family to talk about whether to withdraw the ventilator. The family says we won't give up. We are praying for a miracle. Have any of you guys encountered a case like that? Okay, so this is one of the things that I've been very interested in, is just how family members incorporate religious and spiritual beliefs into their decision-making and how we as clinicians should respond to those. So what I'm going to do today is talk a little bit about the research that already exists on the association of religion and end-of-life preferences. I'm going to talk briefly about some research we've done exploring patient and surrogate preferences. Because most of our patients were Christian, I'll talk a little bit about Judeo-Christian perspectives on death and dying and propose a theoretical model in next steps. So I'd say that there's been a growing body of research that explores the impact of religion on preferences for end-of-life care. And I'll just give you a few example studies. One study by Van Nessetal found that patients who endorse growing closer to God during illness want more aggressive care. They did look at other variables such as religious attendance, identity, and spiritual growth and found that these did not impact desires for aggressive care. So it really depends on which aspect of religious experience you look at. Patients with higher level of religious practice are more likely to think DNR is immoral. Those who relate religion to a highly important one want more aggressive care. Finally, a study by Phelps that's been widely quoted that actually found that positive religious coping impacts aggressive care that's received at the end of life. So not just preferences, but actual care. I mean, as you know, there are a variety of dimensions of religious experience that have been explored, mostly one at a time, although that first study up there does look at several dimensions. So overall, there's kind of this general association with religiosity and preferences for aggressive care. So as many of you know, my own work has been motivated by the idea that making decisions for others differs in fundamental ways for making decisions for oneself. And so it's worth looking at whether there's any research out there about the surrogate situation. And actually, there's very little. One study that was done of the general public and published in a surgery journal found that over 50% of individuals believe that divine intervention could save a family member from a major trauma when physicians have determined care is futile. Another study of surrogates found that 64% expressed reluctance to believe physicians' futility predictions, and one of the things they cited was divine intervention. In fact, surrogates' prognostic estimates are not just what their doctors tell them, but things like optimism, intuition, and faith. So as you can see, there's not very much literature about this relationship. But what I think is important is that overall, there's evidence that patients and families who are more religious tend to want more aggressive care at the end of life if you account for the fact that there are various measures and definitions of religion and limited data for surrogates. As I'm sure many of you have experienced sometimes very complicated ideas and medical ethics get translated into very simplistic generalizations for both the general public and I think for practicing physicians. And I'm afraid that the message that's gotten out there as a result of this research is that religious people want aggressive care at the end of life. And I think that's problematic, and I think sometimes when we confront a family who says I'm expecting a miracle, don't stop, or we're going to continue aggressive care because of faith in God, we tend to end the conversation. It's like a block. We feel like there's nothing we can do. And I want to explore the possibility that there's a lot more going on there. So when you look a little deeper at this research, I'm going to start with a study by Balboni that surveyed patients that about 26% of all patients would want all members to extend life even if they were going to die in a few days anyway. And patients who expressed religious was more important to them were more likely to want all these measures with an odds ratio of 1.96. Now that seems like a potentially challenging situation for those of us in medical care who think that quality end of life care often can involve a focus on comfort. But the bottom line is that 74% of patients did not want these measures. And with an odds ratio of 1.2, it still has to be less than 50% who actually wanted a palliative approach to end of life care. Another study that I think has sometimes been misinterpreted as the Phelps study, which found, again, that patients with high religious coping tend to want more aggressive care. But if you look more specifically at the numbers, for example, you see that even of the high religious copers, only 13.6% received intensive life prolonging care at the end of life. And 71% of those patients received hospice at the end of life. So I think the conclusion from this should be that the majority of individuals, religious and non-religious, but here the majority of religious individuals want and receive comfort and hospice care at the end of life. And I think that's a very important conclusion for all of us to understand as we approach patients who are highly religious with questions of end of life care. So I want to talk now about some research that I've done over the years with both patients and surrogate decision makers about how they understand decision making. And I just love what Lynn has introduced us to of the concept of looking at how families and patients, ordinary people, kind of understand conflicts, maybe philosophical or religious ideas. I think that's incredibly important. So when I was in Atlanta, we interviewed a series of patients about their own preferences of end of life care. And one of the things I found is that in Atlanta, particularly where I was in an urban public hospital, religious talk was very prominent. In fact, I would say that there was kind of a social response bias and favor of it. And so even though we didn't particularly ask about religion, we got a tremendous amount of information about it. So patients reflected a variety of perspectives on this, some of which involved religious justifications for an acceptance of death. As this one said, I don't actually fear death as I did in the past because I know it's a deliverance. Death is a deliverance. Like this world outside of where we live in, it's about time for me to go somewhere else on another journey. So in this case, there are religious perspectives invited in acceptance of death. But in contrast, we found some who rejected death or wanted a long life and invoked religious reasons for this. I know I want to live a long life, a long life. I'm 74 now. I want to get that age again. 74 again. We'll see. Ain't nobody want to die. You know nobody want to die. I can't understand people wanting to die. I want to live as long as the good Lord lets me live and you do too. So in this case, the patient was both reflecting her desire to live a long life in the hope that she did, but also a reflection that this was ultimately in God's hands and not in her own hands. More recently in Indiana, we've interviewed surrogate decision makers about their perspectives on death and dying. And so we've done a series of interviews and looked for similar themes among surrogates. And again, we find mixed perspectives. We find an acceptance of death. For example, a daughter making a decision for her mother who said, I feel that will be the best decision for her. This is about a DNR order. And if her heart were to stop beating, I feel like God was calling her home. In contrast, we find evidence of patients who struggle against death. A patient who hoped for a cure, or a family member who hoped for a cure for her sister. I just keep faith in God that she's going to be all right. In another situation in which two family members were asked about whether to write a DNR order for their parent. And the daughter who we were interviewing who was opposed to the DNR order challenged her sister saying don't you believe in miracles. As a reason why a DNR order should not be agreed to. So what we find in both our interviews with patients and surrogates is a tension between acceptance of death and struggle against death and hope for a cure. And some of the themes we found include of belief in the inherent value of life, hope for a miracle, the struggle, the heroism of the struggle against death, and then in contrast acceptance of death as God's will. And death is the beginning of an eternal life. And I'll talk about a couple of these in greater depth. So there's a tremendous emphasis on the value of life in many world religions, probably all. And I'm going to talk more specifically about the Judeo-Christian tradition and particularly Christianity because that's where the majority of the patients in our studies were from. So there's a belief that life is valuable. Life was a creation of God. This is present throughout the Judeo-Christian tradition. In a couple of years ago, I remember a wonderful talk here by Dan Salmacy in which he talked about the fact that the value of life is different. The value of life is infinite and it's different from other concepts like the length of life. I can't possibly do justice for it. But the bottom line is that this is a complex concept and yet for some of our patients it leads to a belief that they must struggle against death. It's perceived as heroic. It's perceived as an expression of their faith. And while it's true throughout our population of patients, we may have found it's particularly true for African-Americans. And Lavera Crawley has made the observation that in the African-American community such personal struggle takes on an air of dignity and nobility which resonates with broader social and political struggles to ensure equality or correct injustice. So an important theme for many of our patients. Another theme that pervaded our interviews and is certainly present throughout the Judeo-Christian tradition is that the belief in the miracles are possible. From Moses parting the waters to the miracles of Jesus this is an incredibly important belief and for many people keeping their faith means hoping for a miracle. And for some of them, they articulate that hoping for a miracle means we as physicians cannot take away aggressive medical treatment. However, within Christianity certainly death and the afterlife are central elements of theology based on the notion of the death of the body as the beginning of eternal life. And this also promotes a sense of acceptance that many of our patients voice throughout the interviews. Now I think these themes are central and I think specific prohibitions against restricting medical care or insisting on medical care are actually much rarer. So for example, some Orthodox Jews believe about the breath and the importance of the breath in life. Jehovah's Witnesses actually may refuse bread products and there are Catholic prohibitions against withdrawal of artificial nutrition in the PBS although it's possible that that's really because the PBS is not regarded as a terminal disease but rather as a state of profound disability. So the third and probably most important conclusion I want to draw for this is that the themes of acceptance of death and struggle against death are both important concepts for religious patients and surrogates. Both are perceived to be consistent with strong faith and so I want most of all to question the notion that a struggle against death and a desire for aggressive life prolonging therapy is more consistent with faith than the opposite. I think this is important both in how we approach our patients when religious themes come up in surrogate decision making or even in decision making and I also open some doors for research which I'm going to talk about a little bit next. How am I doing on time? Two minutes. Okay, alright, that's about right. So the questions I want to ask are when do the themes of acceptance versus struggle emerge and I'm particularly interested in the case of surrogate decision making. So there are two things I want to propose. One is that these may vary based on the religious dimension that is being measured. Religion, of course experience is a multi-dimensional concept. There are patients who may be high in intrinsic religiosity, who may be low in religious activity and most of the studies have actually just looked at one of these and not looked at how they fit together. So to give you an example, Pargament has developed the concept of religious coping in order to understand how individuals are making the use of religion to understand and deal with stressors. Including methods of coping to gain control, where some people might take a collaborative approach. In an item from one of the surveys is I try to put my plans into action together with God. Others may plead for direct intercession by praying for a miracle, for example and those may lead to very different hopes and very different desires with respect to what to do. In contrast, religious orthodoxy, confirmation to specific creeds or doctrines. So there's a scale for this to be religion specific because of the specificity of creeds. I believe one must accept Jesus Christ as Lord and Savior to be saved from sin. So I propose that it is important to measure not just one dimension of religious experience, but many when we're looking at how they impact these desires for aggressive care and comfort care and that we may find differences depending on the religious dimension that we measure. But second and probably and of course these are moderated or impacted by a variety of other issue demographic factors. But probably more important for the medical setting is I believe that these when these themes of acceptance and struggle emerge may vary based on other modifiable factors. Some of which are religious and spiritual and some of which are non-religious. And I'll just give you an example of trust. This is an area where there hasn't been a lot of research, although maybe tiny signals in some studies. But I was presenting this as a work in progress to colleagues and a neonatal specialist in the room who I will tell you off the bat as an atheist said to me this is so true. I sit down with my family and they talk about religion and then I've established trust and God leaves the room. Now I thought that was really interesting and of course it shows her bias. But I think her perspective was that patients and family members are often invoking their religious talk when they do not trust us. And I want to propose that honoring their religious experience and respecting them as individuals may in fact allow the conversation to move forward and religion may no longer serve as a potential barrier to making good decisions. So what I propose is that in addition to the dimensions of religion these other dimensions such as health literacy communication trust and spiritual support actually pay a tremendous impact on how this relationship plays out and I want to study this in a more elaborate or depth. So the next steps are that we're conducting a prospective study of 350 surrogates who are interviewed during hospitalization when they're actively making a decision for a seriously older adult. We're measuring these dimensions of religious experience and then also these things that I think may impact the relationship either through mediation or moderation. And then doing a six month follow up where we actually look at the care patients received at the end of life. And then we have our patients die. So the point of all this, it's nice to characterize these relationships and have a wonderful model but what I truly hope is that our decisions can be enriched by understanding the many factors that go into surrogate decision makers religious expressions during decision making and that religion should not be a barrier to good decisions about end of life care that in fact if we can establish trust, provide spiritual support and good communication it is possible that we'll be able to move through these conversations and provide effective end of life care when we need to. Thank you very much.