 I'm delighted to introduce our next guest, good friend and colleague, Dr. Alexia Torque. She's an associate professor of medicine, I'll give you a note to you, and the associate division chief of general internal medicine and geriatrics at Indiana University. She's also 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. Her research focuses on end-of-life care, patient communication, spiritual aspects of care, and surrogate decision-making. Today, Dr. Torque will give a talk titled The Role of Religion, Spirituality, and Spiritual Care in the Experiences of Surrogate Decision-Makers. Please join me in giving a warm welcome to Dr. Alexia Torque. Thanks so much, it's great to be here. As other speakers have mentioned, when I was asked to give a title a couple of months ago, I gave what I thought I was gonna talk about, and I'm gonna talk about something that's overlapping, but not exactly the same. I'm gonna briefly talk about, let's see if I can move it, there we go. I'm gonna briefly talk about religion, spirituality for both patients and surrogates, but then I'm gonna make sure I focus some of my time on how we address religion and spirituality in the healthcare context, specifically spiritual care and chaplaincy. And so I'll hope to accomplish that in the next 18 minutes. My disclosure is I'm funded by the NIA and I don't have any industry funding or other conflicts. I'm gonna start with some definitions and framing of this topic. When I started this work, doing more formal work on religion and spirituality, I had kind of an interesting encounter at one of our work in progress sessions at IU where one of my colleagues stood up at the end and said that he felt really uncomfortable when I started talking about religion and spirituality. And in fact, he felt judged. His own story was pretty interesting. He's from Syria and he grew up under what he perceived as a very oppressive religious regime. And when he came to the United States, he decided that he wasn't going to practice religion and he didn't believe in God and really he's a committed atheist. And yet when I talk about religion and spirituality, he felt judged. This led to a really worthwhile dialogue between the two of us about what it means to talk about religion and spirituality and the perspective I take on respecting other people's points of view. And so I'm going to start with this definition of spirituality developed by Christina Pujolsky and others is kind of a consensus definition, that it's a dynamic and intrinsic aspect of humanity through which person seek ultimate meaning, purpose and transcendence and experience relationship. It's expressed through beliefs, values, traditions and practices. I think there are a couple of things about this that are important. First of all is that I believe that spirituality is an intrinsic aspect of every person. Whether they are religious or non-religious, I believe this to be the case. I believe these dimensions such as ultimate meaning, purpose and transcendence are some things we all experience. Now some may even take issue with that. They may say that in fact some individuals consider themselves to not be spiritual. But for purposes of this discussion, this is what I think. And it respects people who are both religious and non-religious. Religion, as Dan Solmacy says, is a set of particular beliefs, practices, sacred texts and other features related to the transcendent experience. So probably a more narrow, you may perceive it as being entirely subsumed within spirituality, although there might be aspects of religion that are in fact not spiritual. The second area where I've gotten some pushback and just want to kind of address is the area of research on spiritual care. In the course of my research, I've gotten some pushback from chaplains and others. So first of all, my friend, Malaz, who said that he's concerned that my research will advocate for particular religions or just advocate for religion more generally. Chaplains have countered that or have argued that spirituality and spiritual care just can't be put under a microscope that in fact these things cannot be studied. And I'd say that as many of us have proved over the last two days, deep questions about meaning, purpose and value can in fact be rigorously researched. And finally, chaplains have argued that imposing the scientific method is in conflict with the individual responsive nature of spiritual care. My chaplain colleagues often walk into a patient's room with nothing in their hands, both as a symbol and a practical expression of the fact that they come with no preconceived notion of what the patient will bring to the table. So I'm gonna start by talking about the role of religion and spirituality and illness. And I believe that it fills at least three roles. One is that illness can be conceived as a spiritual crisis. The second is that spirituality and religion are important in coping. And then third, as we all know, they're important in medical decision-making. And in the interest of time, I'm going to try to hit highlights instead of talking a million miles a minute, as is my tendency. So I will skim over some of this. This study by Nixon at all, I thought it had some great quotes to illustrate illness as a spiritual crisis. As this patient said, I feel scared and thought I was probably gonna die. This makes me think seriously about my life. What had I done to deserve this? The whole thing has awakened in me, stirred in me religious beliefs, a whole reappraisal of life. The Jungian analyst, Jean Genot de Bolen, has described illness as a trip to the underworld. It is something that can be terrifying. It is a change. We come, if we come back, we come back significantly different than how we went in. I mean, I thought that was a wonderful metaphor for illness as a spiritual crisis. And can spirituality and religion help people cope? Here is a quote from one of our studies. I know that without faith, I couldn't have come this far. Faith is very important to me because of the simple fact that without faith, I probably wouldn't be here right now without hope and faith and trusting in the Lord. A study done in LA found that 80% of patients with serious mental illness used religious activity or belief to cope and 30% reported that religion was the most important thing that kept them going. Moving on now to preferences, to decision making. I think there's substantial evidence, as I've spoken in past years, that religion has an impact on end-of-life preferences and treatment. First of all, patients who are more religious do have a tendency to choose more aggressive life-sustaining treatment. We found in research that we recently published that surrogates who believe a miracle might save the patient are less likely to prefer a DNR order and the patient is actually less likely to receive hospice at the end of life. So we conclude there's evidence that patients and surrogates who are more religious tend to want more life-sustaining treatments at the end of life. But there's just gonna highlight a couple of aspects of data. So this study at the top is from the Phelps study which actually showed that high religious copers tend to prefer more life-sustaining treatment at the end of life. And I'll highlight here that they received, for example, more intensive life prolonging care. But I think an important point here is if you look at the high religious copers, only 13.6% of them actually received aggressive life-sustaining treatment at the end of life, suggesting that the majority obviously did not. The bottom table shows us that study that we recently published in which we looked at multiple dimensions of experience for surrogate decision-makers. And I think the important thing here is that in the both the vibe-variate and the adjusted odds ratios, the vast majority of religious dimensions were not associated with receipt of hospice with one notable exception and that is miracles. Patients who endorsed that a miracle could save the life of a patient were substantially less likely to allow the patient to be enrolled in hospice or to have the patient enrolled in hospice at the end of life. So again, it is not any dimension of religiosity is this particular belief in miracles that's important. How do patients in surrogates explain this? Here's a patient saying I don't actually fear death as I did in the past because I know it's a deliverance. And another one talking about her mother that she did not want extraordinary means because after that it was God's will, let God take over. So themes of acceptance of death and struggle against death are both important concerns and both are conceived to be consistent with strong faith. I think it's really important to think about how this relates to our work as ethics consultants and there was this fabulous study by Mandini that was done in 2017 about religion and ethics in consults regarding life-sustaining treatment. So they reviewed 95 consults at Mass General Hospital and they found that religion was present in three ways because several of which I've mentioned it was important in coping. It was important because chaplaincy visits allowed an opportunity to process religious and spiritual themes and decision-making and it was central to conflict in life-sustaining treatment. As you see on this table, it was central to conflict in 25% of cases but it affected coping 65% of the time. And so while we often think of religion as a source of conflict, it really serves multiple roles. Importantly in this study, religion was not associated with in-hospital death or receipt of life-sustaining treatment. So it's important to know that again, the literature is somewhat inconsistent in this regard. So now moving on to where I really think the focus needs to go. We know that religion and spirituality are important in the illness experience and they're important in treatment decision-making. How do we provide support within the healthcare setting? How do we address this? There's some data about how we do or don't do this well. A study by Ernikoff and colleagues that looked at goals of care conversations in the intensive care units with audio recordings found that religion or spirituality was raised in only 16% of conversations, usually by the family. That was 40 cases. And how did clinicians respond? They only further explored those relief beliefs in eight out of 40 cases. So the vast majority of the time they just moved on. In the coping with cancer study, they found that 88% of cancer patients considered religion to be at least somewhat important. Less than half reported their spiritual and religious needs were met by their own communities. And 72% reported that they were minimally or not at all met by the medical system. So a lack of support for something that was very important. This same study examined the effect of spiritual support on decision-making and found something really interesting. Terminally ill patients who are well supported by their own religious communities use hospice less and aggressive medical interventions more. But if they put reports support by the medical team, which included chaplains but wasn't just limited to chaplains, they reduced aggressive treatment. So it's really interesting. People's own faith communities, people who are connected to their own faith communities have more aggressive treatment. Spiritual care by the medical team decreases it. So why are those effects so different? Here's another study back to the Nixon study that just demonstrates what this religious support in the healthcare system might look like. The nurse at night allowed me to cry. She remained with me just sitting by me. I felt accepted that way. I remember she did say I could speak to the hospital chaplains if I wanted to. The day staff would organize it for me. The chaplain did visit me and I did find it helpful. I owned pastor and church friends visited and this was most helpful of all, of course. And chaplains provide support as well. Chaplains came by and prayed with her at times. Got healing touch was instrumental in her getting better. And also you don't only ask for prayer for the patient but you ask for prayer for the family as well because it was a really hard time. So I think that spiritual support and care can be provided by many medicals of the medical team and in fact there are some important models and research done on how that responsibility can be shared. But chaplains are our spiritual care experts. I think that over the course of my career I didn't understand what chaplains did until fairly recently and I wanna share some of that with you. There are 10,000 healthcare chaplains in the US that provide 10 to 15 million hours of care each year. Chaplain staffing in hospitals varies widely from perhaps even just a local clergy who volunteers to a highly professional staff and chaplain training programs which include interns and residencies. Chaplains are trained through a series most have a masters of divinity and then complete internship and residency sometimes usually one year but sometimes two years in order to learn to comprehensively assess spiritual and religious needs of patients, families, staff and address those needs. This is just a snapshot of some of the competencies that the Association of Professional Chaplains advocates including established deepened and impestoral relationships with sensitivity, openness and respect, manage crises, formulate and utilize spiritual assessments, provide religious and spiritual resources and facilitate theological reflection. All of these things require extensive training and openness and something that I think I've mentioned but will emphasize again is that chaplains are trained to care for patients who share their faith and for patients of other faiths and for patients of no particular religion. One area of the research in this area has been really just characterizing what chaplains do. This is the whole field of spiritual care research and interventions is pretty early and so this study by Masigate all was an effort to use focus groups, review of the literature and then some validation to actually demonstrate what chaplains do and this is just a part of their long table about chaplain tasks that include for example, aligning care with patient values, accompany someone in their spiritual and religious practice outside your faith tradition by acknowledging the current situation. You might build a relationship of care and support and assist with finding purpose and important aspect of spirituality. We've conducted a study or this is a collaboration with George Fischat and Dirk Labashain and others at Rush in which we conducted a retrospective chart review of ICU notes for 100 and well actually for about 250 patients. We found in the ICUs that about 78% of patients receive at least one visit. Most of them receive just one or two and the most common activity is emotional and spiritual support. One thing that I'll highlight is that is the role of chaplains in decision-making. We found a rather low number based on what they report in their chart notes. We were able to find evidence of documentation of decision-making support in only about 15% of cases. This is a little bit in contrast with a study by Jeannie Werpsack who's here at this conference. She conducted an online survey of 463 full-time chaplains and asked them about six activities and found that supporting patients and families in emotional process of decision-making was present 71% of the time, I'm sorry, half the time or more in 71% of cases, communicating patient beliefs and values, helping patients and families clarify factors that impact treatment options. And so she actually found a much higher prevalence of decision-making support based on the chaplain's own report. Another study that we've conducted at IU Health was led by Alex Lyon in which he selected 30 children representing 230 chaplain encounters and did an analysis of what we can learn from the notes. And I think the study was really fascinating. They found rich descriptions of spiritual and psychological aspects of the patient and family's experience. And it was just amazing how much we could learn about the patient and their family from reading these notes. And the sad reality is that many of us as physicians in particular do not read chaplain notes. Here's one that I thought was sweet, knowing that his hair was going to fall out, he owned it by letting his brother give him a mohawk. Chaplains conducted diverse interventions, both religious and secular in nature. Some of these were tailored to children and involve things like song, games and touch. Some of them were more advanced with parents. So here's a chaplain who wrote in their note, the parents and I spoke about whether God tests human beings. I suggested that many events during an illness can encourage human beings, including their son, to grow into a fuller understanding of God. So some deep theological reflection with a parent. And finally, they provide care within a longitudinal relationship, particularly in the setting of pediatric oncology where a chaplain told a mother, we are here to walk with her, whatever road may be ahead of them. Of course, we are also interested in intervention research and high quality interventions. Just like we do, we are interested in the rest of medicine. And this is at a really early stage. Several systematic reviews that were published a few years ago by Fischette and others found only three high quality studies of chaplain interventions. And I'll briefly mention one was in COPD patients. One was conducted at our hospital on patients receiving cabbage. And then another one by Karen Steinhauser that assisted the patient, sorry, the caregivers of patients with ALS or cancer. And I'll say that the only difference they found between the intervention and control groups was some difference in the caregiver's preparation for death, but not in anxiety or peace. I'll end by talking about a study that we're conducting now called the Chaplain Family Project, in which we've developed an approach to spiritual care that could be used in a randomized controlled trial. And we did this by trying to balance the openness the chaplains want in their practice and think as core to their practice with the rigor that's needed to implement this in a randomized controlled trial. So we developed this with an interdisciplinary team. We called it the Sky Framework. We proactively contacted families addressed four dimensions of spirituality, the interventions and documentation. And I'll just show you here, basically, this is our framework. The four dimensions include meeting and purpose, relationships, transcendence and peace and self-worth. And I'll just end by saying that we conducted a pilot study with 25 surrogate decision makers and we're now about halfway through a randomized controlled trial of 160 participants. And so I think really, when you look at this, I'm gonna go right to the end and just talk about next steps, is that I think we need larger multi-centered trials in this area and I think the time is right for funding from national sources, including the NIH and the Palliative Care Research Cooperative. Chaplains are forming national networks of researchers, including transforming chaplaincy in the PCRC and we need to continue to train chaplains in research and then finally to implement trial results to improve practice. Thank you very much. Any questions? I was curious in whether