 Alexia Torque, who I thought her name was said Torque, but I was wrong, and she corrected me, so now we all have to remember, is an associate professor of medicine at Indiana University and the director of the Daniel F. Evans Center for Spiritual and Religious Values in Healthcare and the Fellowship Director of the Fairbank Center for Medical Ethics. That's like, you don't do anything, do you? Just kind of sit around. Her research focuses on end-of-life care, patient communication, spiritual aspects of care and surrogate decision-making. She was the first person to describe and analyze the relationship between doctors and healthcare surrogates. Dr. Torque's also done work in medical education, designing and evaluating curricula regarding end-of-life care and clinical ethics for medical students, residents and fellows. Please welcome Dr. Torque. Hello, it is a pleasure to be here. Thanks as always to Mark and the other leaders and staff at the McLean Center, especially the staff who kept this conference moving along so well. I'm deeply appreciative of this, yes. I am deeply appreciative for this community and the opportunity to see all of you in this two-day conference. So here I am back again to talk about surrogate decision-making, a topic that has fascinated me for over a decade now. And as many of you know, my research is motivated by the experience that making decisions for others is fundamentally different and I think fundamentally more difficult than making decisions for oneself. It involves different ethical principles, approaches to communication and more recently for me questions about meaning and faith. About three years ago, I presented some preliminary qualitative data here about surrogate's religion and spirituality and now I hope to present a richer picture that includes a larger observational study of a cohort of surrogates of hospitalized older adults. So I'll start with a case to quickly orient you to the kind of patient I'm talking about a 66-year-old woman with a long history of heart failure is admitted with an exacerbation and respiratory failure. She has cardiac arrest on hospital day three, on day six, she is completely unresponsive. The family says we won't give up, we are praying for a miracle. Any of you who have participated in ethics consultation or hospital care have been involved in a case like this, requesting life-sustaining treatments because of religious beliefs in the face of a poor prognosis is a source of ethical distress for clinicians and a source of conflict for families. So what I'll do in this presentation is first review the literature on the relationship of religion, spirituality and decision-making for both patients and families. I'll draw some conclusions from what has been done by others and then show both qualitative and quantitative research that I've conducted over the years to fill this out. So what do we know about the impact of religion on end-of-life preferences in care for patients making their own decisions? Well, several studies have shown an association between religion and preferences for aggressive treatment. So for example, patients who endorse growing closer to God during illness want more aggressive care. All the way at the end here, patients' religious coping impacts actual aggressive care received at the end of life. So there appears to be an association. What do we know about surrogates? Well, not very much. One study found that over 50% of the public believes that divine intervention could save a family member from a major trauma when physicians have determined care is futile. Other studies in this area have found that in ICU population, religion and spirituality were only raised in 16% of conversations, mostly by the surrogate, and clinicians further explored those beliefs in only eight of the 40 cases. And then other qualitative research has just sort of identified themes that are important to surrogates, but not their particular role in decision-making. So what do I conclude so far? There is evidence that patients and families who are more religious tend to want more life-sustaining treatments at the end of life. I feel like this has become a little bit of the common wisdom, and what I wanna do now is question that assumption. So I think the story is more complicated than that. Here's a study looking at a population of cancer patients from the coping with cancer study. They found that 26% of all patients would want all measures to extend life, even if they were going to die in a few days anyway. So about a quarter. Patients who expressed that religion was more important were more likely to want all measures with an odds ratio of about two. But the other way to look at it is that three quarters of all patients do not want this, and at least half of highly religious patients don't want it. I think that's important. Looking at that study that looked at the actual receipt of care, this study measured the extent to which a person copes through religion. So for example, they turned to religion for comfort in times of stress and divided patients into high and low religious copers. So although that's true, that the high religious copers wanted more aggressive care as evidenced by these differences between high and low here, it's important to point out that only 13% of the high religious copers received intensive life prolonging care at the end of life, and 71% of them received hospice. So I think this shows that the majority of religious individuals both want and receive hospice and comfort care at the end of life. I'll talk briefly about life and death in the Jewish and Christian traditions. That's the faith of the vast majority of the patients I care for and do research on. But I want to acknowledge that this is a limited and incomplete perspective. I'm working with George Fischett, who's here in Chicago actually, and I've studied to extend this to members of other faiths, and I hope to be able to tell you about that at some time in the future. So this tradition perceives life, especially human life, as the creation of God. And the Christian tradition also speaks of eternal life and life after death, suggesting that death is not in fact the end or even necessary something that we should fear or avoid. There are also cultural factors that intersect in complex ways with religion as Lavera Crawley has written in the African-American community, such personal struggles take on an era of dignity and nobility which resonates with a broader social and political struggles to ensure equality or correct injustice. Let's look at what patients tell us. I'm gonna show you some quotes from a study we did of African-American patients at Grady Hospital in Atlanta over 10 years ago. So one man said, I don't actually fear death as I did in the past because I know that's a deliverance. Death is a deliverance like this world outside of what we live in. It's about time for me to go out somewhere else anyway on another journey. Here is a daughter who says I know, or wait, here's another patient actually who says I know I wanna live a life, a long life. I'm 74 now. I wanna get that age again. I can't understand people wanting to die. I wanna live as long as the good Lord lets me live and you do too. This patient both wants to live a long time but acknowledges that in her view it's ultimately up to God. What do surrogates say? So here is a daughter. We found that surrogates express a similar diversity of views. I'm here as a son talking about a conversation with his mom. I said, when it's your turn, you'll go. And I said, asking for it might help but I said, I doubt it. I said, he has a time for everybody. And now here's a daughter. My mother did not want extraordinary means. She wanted us to go so far and then after that it was God's will, let God take over. So another statement about who's really in control here. It was actually harder for me to find examples in this study of people requesting care on the basis of faith. One surrogate told me about how he hoped for a cure for the patient saying, I just keep faith in God that she's going to be all right. Another was arguing with her family because she opposed a DNR order and said to them, don't you believe in miracles? So what we see from these diverse quotes is that the themes of acceptance and struggle against death are both important concept for religious patients and surrogates and both are perceived to be consistent with strong faith. Because cases about miracles like the one I presented at the beginning are paradigm cases and clinical ethics, I wanna find out more about whether the association between religion and desires for life-sustaining treatment hold for surrogates as well. And we were able to do this in the context of an observational study of surrogate decision-making for older adults in three hospitals. We enrolled patients where the surrogate had made one of three types of decisions for the patient listed here. So to explore these relationships, it's important to understand that religion and spirituality are multi-dimensional constructs. And it may be the case that they affect preferences for care differently. This may be important in terms of understanding surrogate perspectives and making difficult decisions. So through a literature review in an in-depth process with some of our chaplains and theologians on campus, we identified several dimensions as well as validated scales for most of them. So for example, for spiritual well-being, we used a scale called the facet SP for religious coping, the brief R cope. We proposed that these dimensions of religion and spirituality affect decisions for life-sustaining treatment at the end of life, and that each dimension may affect decisions differently. And further, of course, these decisions are further affected by demographic, emotional and cultural factors that must be accounted for in the model. So this is our basic conceptual model. So our 360 participants had an average age of 82 for the patients, 28% were African American and most of the surrogates were adult children. So I'll show you some of the results from the religion and spirituality items. So here, 44% attend religious meetings weekly or more, a fairly religious sample in Indianapolis. Over half engage in private religious activities, daily or more. In intrinsic religiosity, a classic item is my religious beliefs are what really lie behind my whole approach to life, tends to be true or definitely true three quarters of the time. Here's the item we wrote about miracles. I believe that divine intervention or a miracle might change the course of the patient's illness and 56% agreed or strongly agreed. Now turning to our preferences for care, we also asked the surrogate what their preferred code status was for the patient, and we found that 55% preferred DNR status. For the 156 patients who died within six months of enrollment, we found that only 45% received hospice at the end of life. This was a surprise to me. And I'll say we did this through medical record review through the Indiana Network for Patient Care, which is a shared data system in central Indiana, and then also by surveys with the survivors of decedents. So it might be an underestimate, but I think we're pretty close. We also find more appallingly that 76% of our sample received at least one of those life sustaining treatments within 30 days of death. Joan Tino and others have validated this. A lot of people are getting hospice, but they're also getting ICU care in the month before hospice. So back to our model. This table shows the odds ratios for the surrogates preference for DNR status. The first column shows the unadjusted odds ratio for each dimension, so separate analyses, and the second shows them all in the model together with the covariates listed below. So as you can see, belief in miracles was the only one that was strongly associated with DNR status. So if you believe the divine intervention or miracle could save your family member, you're less likely to favor DNR status for your family member. And then religious denomination was significant in the unadjusted, but not the adjusted analyses. Moving on to what actually happens, as you can see here, for aggressive care in the last 30 days of life, there were no significant associations with any of these religious or spiritual variables, so no associations whatsoever. For hospice at the end of life, you can see that intrinsic religiosity or believing that, or stating that religion is the master motive in their life or lies behind how they live their life, it was significant, and also the belief in miracles. So again, with these odds ratios less than one, it suggests, for example, that believing in miracles made it less likely that the patient would receive care at the end of life. All right, so from this we conclude, there is limited evidence that surrogates who are more religious prefer more aggressive care for incapacitated older adults, or that the older adults get more aggressive care with an exception or two. The belief that divine intervention or miracle could save the patient's life is associated with preferences for full code status and lower hospice use, and intrinsic religiosity is associated with lower hospice use. So strange exception. So the implications of this are that the relationship between spirituality and religion and care decisions is highly variable. There are patients and families who endorse both acceptance of death and resistance to death on the basis of their faith. Requesting aggressive life-sustaining treatments on the basis of religion should be the start of the conversation. I feel so often what I'll hear from a resident is the patient was hoping for a miracle, so we're just gonna continue to do what we're doing. And I don't think that is should be our response. We should all begin to explore what is really going on there. And also finally, there's something different about miracles. It says miracles in hospice, but it's actually miracles in a couple of things. And I just want to explore what is different about belief in a miracles from all these other important dimensions of religion and spirituality. I'm gonna start here with a definition. A miracle is an event that is not explicable by natural causes alone. A reported miracle excites wonder because it appears to require as its cause something beyond the reach of human action and natural causes. I like this definition of a miracle because of its two aspects. A miracle is something that is outside the laws of nature but it is more than that. A miracle evokes wonder at the presence of the spirit in one's life. I want to credit Richard Gunderman, actually one of our early speakers for pointing this out to some of us at a Fairbanks Ethics Center lecture several years ago and he referred to the German word for miracle, wonder, to remind us of this important idea. So both of these concepts matter when we're talking about medical miracles. So when our children's hospital sponsors the annual miracle ride or numerous healthcare organizations choose the slogan miracles happen here, I hope we are not promising divine intervention but we are promising something that is wonderful. I personally am filled with wonder and gratitude at the way modern medicine has saved several members of my family that I love, people I love from life-threatening illness. So miracles are amazing. The wonder of medicine is amazing. So getting back to our topic I think when people ask for a miracle what doctors often hear is you have to continue to life-sustaining care. And looking at my data I'm just starting to think about what does the family member really mean? Do they really mean only God can say it's time? God wouldn't have put him on the ventilator if it wasn't part of the divine plan? Well I'm not sure about that because none of these other dimensions of religion were really all that important. This is a test of faith, as people of faith we must hope for a miracle. I can't stand this, I can't accept the possibility of this death or maybe something more straightforward. I will not give up on the possibility of a miracle and in order to do that I'm going to insist you continue life-sustaining treatment. So how can we respond? First of all of course we remain in relationship, we voice respect and maintain presence and listen. This is a little controversial but I'm going to say that you can hope or pray for a miracle too. I pray for miracles and so I might do that if it feels right for you. We can all hope for them. We can provide the spiritual support they need. This is where our chaplains come in to help understand what they mean when they're asking for a miracle. But I think what's very important is that we do not have to commit to treatments that are medically inappropriate. Here are two examples I've seen in recent years pressers continued in the setting of limb necrosis, dialysis for a patient who was actively dying. So I would say that the family member's belief in a miracle does not compel us to offer these things. We don't give choices to patients that are really choices like for example we could add a new presser if you'd like. We make a recommendation at the very least and as Dan Brudney articulated perhaps might work with the patient to identify important values. Ethics and palliative consultation are of course our allies. And finally the controversial issue of unilateral decision making and dispute resolution. So I hope you'll think with me on what to make of this data. Why are miracles different? And why is it the case that patients who believe in miracles but aren't necessarily religious and spiritual in other dimensions, particularly one aggressive treatments? Thank you. I have a question for you. But there's a question in the audience first but I'm gonna go first. Hi. So I once actually had a family member of a patient tell me that he thought pulling withdrawing care was like giving God an ultimatum. You gotta do the miracle now. And he said he thought that was pretty rude so he wouldn't do it. That is an interesting idea. So I think you can add that to your list. Right, absolutely. That would be another explanation. And I would say that the more, so that's really interesting. I hadn't thought about it as like a challenge to God but I think what some people do say is that God's role is to deliver the miracle and my role is to maintain faith by continuing these aggressive treatments. So I've heard that too. That, you know, I mean we often wanna say and kind of a pat answer, which I think is kind of a dangerous one that doctors want to, or clinicians wanna offer is, you know, well God can work a miracle whether or not we continue this treatment. But what the family members might say is well my job is to maintain faith by continuing this treatment. So they're not all convinced. No. Yeah. No and some of them think they'll piss God off. Right. Yeah, which is really interesting. I had not heard that. Yeah. I don't know. I heard that and I thought, ooh, you okay? So. Your turn. Yeah, Bob Taylor from, no longer from, oh shoot, sorry, from Care Dimensions Hospice. So two comments kind of, or two related. So I've often said to people, God doesn't need our help to make a miracle. But the more, I think the more interesting theological point is why does God make miracles? And of course the perception very often is that somehow the miracle is a reward for faith. But if you read in the Bible, what I, my understanding is that they are signs that God uses and they may or may not, the people who are given the miracles may or may not be particularly faithful. And it isn't so much a reward for faith as it is a sign that God uses for his own purposes which are mysterious to us. And so faithfulness, so to me an attempt to respond to that is yes, faithfulness is a good thing in and of itself. And God may choose to reward your faith with a miracle, but there's no promise made by God that faithfulness will result in a miracle nor will faithlessness. So that's how I've dealt with that. Depending on how, you know, more or less, I say more or less depending on the circumstance, but I found that helpful in some circumstances to have that conversation. Thank you, are you a chaplain? I'm a physician. You're a physician? That's, I think that's wonderful. I'm a frustrated chaplain. A frustrated chaplain. You wanna maybe do some CPE? Cause I mean, I think, I mean, I'll tell you, I think the extent to which physicians are capable of sort of interpreting theology for patients probably varies widely. I think probably most of us do not have that skill. I think maybe some of us do and also our chaplain colleagues do. And I think they're such a valuable resource. Another thing I've heard my chaplain colleagues say is to talk about the kind of miracle that might happen and that there may be other kinds of miracles besides the miracle of cure. And for some people, they're open to hearing that, that God might provide other things that are equally important even if God does not provide the miracle of cure that that person is hoping for. We had one woman who was, I'm sorry to continue, but who was convinced she was gonna have a miracle because she was so faithful and she had young children. But with multiple people talking to her over time, physicians, nurse practitioners, chaplains, she finally came to the realization to agree with our suggestion that what she could do for her children is demonstrate her faithfulness no matter what happened. And that was the most important thing she could do for her children. Yeah, and I think that's wonderful that she was able to come to that on her own. I mean, kind of a new understanding that maintained her faith. Thank you. There is one more. I'm sorry. My name is Arielle. I'm actually a student at NYU and I'm in my second unit of CPE. So I am studying to be a chaplain. And I hope that this isn't too redundant, but something that we're being trained to kind of sort through with patients is what happens when that miracle doesn't come through and how do you maintain that faith and be able to still move on and still have faith even when what you hoped for was dash. Yeah, and I mean, I appreciate that. I think that's something that patients struggle with. I certainly find that in my palliative care clinic. I mean, a little bit along the lines of why did this happen to me? I've been a good person. I've been faithful. Yeah, I mean, the kind of questions of the odyssey kind of come into play when something awful happens to them and they don't get the outcome that they hoped for. But thank you for that comment. Thank you.