morning. Thank you for joining us early this morning. We've got a an expert and engaging panel that I'm really excited about. My name is Elaine Chen. I will introduce I am we all are at Rush University Medical Center and we have for you Dr. Abhaya Trivedi who will be talking about her own experiences and some racial disparities in end-of-life care. Dr. Brady Scott who is a respiratory therapist and leads the educational program for respiratory therapists in our institution who will be talking about the respiratory therapy perspective. I will be talking a little bit about managing symptoms and family expectations and then Dr. Paige Steven who is a board-certified chaplain will be talking about spiritual care. So without further ado we have a lot of content so we're just gonna get started. Welcome. Thanks Elaine for that introduction. Like she said I'll be starting off our session on inter- professional case for compassion at the end of life in the ICU and I'll specifically be focusing on family experiences surrounding the end of life and disparities in end-of-life care. I'm Abhaya Trivedi. I'm associate professor of medicine at Rush University Medical Center in Chicago and I'm the associate program director for the fellowship training program. I have nothing to disclose. Here's a QR code for the question and answer session. Today I'll be discussing a personal experience dealing with end-of-life care and how that has impacted my clinical care moving forward. I'll also be talking about racial disparities in the ICU and specifically at the end of life and different factors that contribute to those differences in the care that we provide. So I'll start out with the case 38 year old with obesity who was admitted with acute hypoxemic respiratory failure and acute encephalopathy requiring intubation. He was at a friend's apartment, had an episode of emesis followed by what was described as choking by his friend. He then lost consciousness, did not lose a pulse per what we were told and the friend called 911 and per her report EMS arrived quickly. So upon arrival he was intubated and subsequent imaging showed changes of significant cerebral edema that was attributed to anoxic encephalopathy. So this patient was my 38 year old cousin. I was 22 at that time and I was just about to start medical school and we were all of course shocked by the sudden events that led to his eventual death but what has stayed with me in the last 15 years has been the way in which the medical team interacted with us during that time. So my aunt and uncle were told that there was nothing else that could be done. I know I've been guilty of saying something similar but didn't really have a chance to ask any questions and regardless of them knowing that he was gonna die they didn't feel like they understood what happened and even when I arrived they really couldn't answer my questions either. They were of course grieving but also very confused about what had happened and anytime they approached it was there was nothing else that could be done. I remember not really getting much information from the physicians there but one of the nurses coming up to me asking me to convince my uncle to allow for organ donation because that was the right thing to do and I was in no place to have that discussion with him. Obviously none of us would be doing that now but I vividly remember that conversation and you know it was not my place. I was not involved in the decision-making nor was I gonna suggest anything of that sort to someone who was just losing their son when he had already made the decisions that he felt like was right. And lastly there really wasn't much information that was given to our family regarding what was to expect once he was terminally extubated. We just thought that he was gonna be extubated and he would pass away quickly but because he was younger otherwise healthy had no other end organ failure he lived and he lived for two weeks while my aunt uncle watched him by his bedside slowly dying thinking that they were starving his son their son to death. So obviously this is still stayed with me as I'm talking about this and this has really shaped how I care for patients at the end of life and discuss their loved ones with their families. Now I know nothing could have changed the eventual outcome and that would have he would have died regardless but the impact that we can have on a patient's family at this time was really real to me and it stayed with me since then. And reflection of this time has also made me realize how important it is to have these conversations and be mindful of where the patient's family is coming from but specifically in our disadvantaged and minority populations. I mean our family had higher level of education had well language wasn't a barrier but we were still met with these challenges so I could only imagine how other families would be treated during this time. And so I'm gonna shift gears now and I think everyone can understand the racial disparities that exist in medicine in general but specifically were highlighted to all of us during the COVID pandemic where we were also involved. So this is from the CDC this is from last year in 2022 where they discussed their rate ratios compared to white non-hispanic persons and all of the groups except for Asian had increased cases, hospitalization, and death compared to white counterparts. But I think what's important here is what the CDC marks is that race and ethnicity are risk markers for other underlying conditions that affect health including socioeconomic status, access to health care, and exposure to virus related to occupation. So it is not because these patients are black or Hispanic that they're dying. It is because of the structural racism that has led to these increased risk factors that lead to their mortality. So I'll switch to a question. So which of the following is true regarding health disparities in end-of-life care? A, black patients were more likely than white patients to be hospitalized or admitted to the ER in their last month of life. B, when compared to bereaved family members of white veterans, families of racial ethnic minority veterans were significantly less likely to report excellent overall care during the last month of life. B, black patients receive hospital services at a lower rate and have lower rates of completion of advanced directives or all of the above. I think most people have had a chance to take a look. So right, everyone was all of the above, and that's exactly what the right answer is. So I'm going to focus now on those specifics that I just discussed. So this was a trial that was done in Louisiana in patients with metastatic cancer that had died of metastatic cancer between the years of 2011 and 2017. And this was a retrospective analysis of end-of-life care from the Research Action for Health Network. And they evaluated whether race was associated with five indicators of burdensome care in the end-of-life, including ER admission, ICU admission, hospital admission, mechanical ventilation, chemotherapy. And what they found was that black patients were more likely to present to an ER or to be admitted to the hospital in their last month of life. This was a survey of California adults on serious illness and end-of-life in 2019. And they compared a total of 1635 African-American white adults. White patients were 50% more likely to complete an advanced directive. And differences were explained by level of mistrust and discrimination experienced by African-Americans. This was a retrospective national study using the renal database system. And this was over a million patients that were dying on dialysis during the years of 2000 and 2014. And the primary outcome was a discontinuation of dialysis prior to death or death in a non-hospital or hospice setting. And the primary outcome was less likely to occur in any minority group when compared to the non-Hispanic white patient population. And this was 10% versus almost 23%. And even when they adjusted for factors such as age, sex, income, insurance, the primary outcome was still lower in any minority patient compared to their white counterparts. And lastly, this was a survey of bereaved families of minority veterans in our VA health care system. And this was a retrospective analysis of that survey. And the sample included 18,000 patients who had died over a course of 120 VAs between 2010 and 2015. And bereaved family members of racial ethnic minority veterans were significantly less likely to report excellent overall care during the last month of life compared to white families. And specifically, families of black veterans were nearly half as likely to report excellent overall care than their white counterparts. And so that study was already done. And that was data that was available. But this specific study looked at why this could be the case. And some of the specific etiology they looked at were if it was related to burdensome transitions and high intensity end-of-life care, spiritual support, death benefits, or care and communication. And interestingly, they didn't find that any of those factors related to why patients of minority families were rating this poor quality of end-of-life care. So this just shows that there's further research that needs to be done as to why we're seeing this disparity. So what are some of the factors that are contributing to disparities? And really, we have to start and think about the mistrust and perceived discrimination. And where does that come from? Now, I'm going to bring up the Tuskegee experiment. Because every time I review this, I am really appalled by how recent this was. And this wasn't something that was in the remote past. So just to briefly summarize, in 1932, the US Public Health Service, working with the Tuskegee Institute, began a study to record the natural history of syphilis. This included 600 black men, 399 with syphilis, and 201 without. Researchers told the men that they were being treated for bad blood. But in 1943, penicillin was a treatment of choice for syphilis. But none of these patients were offered the treatment. But the study wasn't stopped until almost 30 years later, in 1972. And the last patient in the study actually died in 2004. So I think we'd like to think of this as a remote past, but it's not. It happened very recently. And this has been continued, not specifically in this way. But racial bias and discrimination are continuing to occur today and affect the care that we provide and affect the mistrust that continues. And I'm going to focus a little bit on the continued racial bias and discrimination in health care specific to our field. And to talk about race correction and pulmonary function testing. So I came across this from Lundy Braun. She's done a lot of research and looked into race correction and spirometry. She's a professor of pathology and Africana studies at Brown University. And she started writing about this when she read about a controversy in Baltimore in 1999. And through her work, she describes how race correction is embedded in racism. So that controversy was in Baltimore in 1999, dealing with Owens Corning, which was a manufacturer of insulation. And they were the targets of lawsuits over charges that the asbestos in its products were sickening workers. And this was dealing with thousands of workers. But the company asked the judge to make it harder for African-Americans in Baltimore to take the company to court. They wanted black people to show that they had worse lung function compared to white counterparts as a result of asbestos exposure before they qualified for trial. But the request was thankfully blocked by the judge. But she read about this. And that's what led to her writing, her research, and her book. And when we look into this further, it's not from 1990. This was a justification for slavery. Thomas Jefferson writes about this as poor lung function as a justification for enslaving black people. And Samuel Cartwright, a plantation physician and slave owner, developed his own spirometer and arbitrarily picked a 20% difference in lung function. And this was, again, perpetuated until very recently. This has been continued as far as a race correction factor in pulmonary function testing. Now, recently this year, the American Thoracic Society has urged to move to a race-neutral equation. Our institution did that last year. But many institutions still haven't made this change. And finally, to discussing pulse oximetry, which came to light again or got a lot of emphasis during the COVID pandemic because people were using pulse oximeters at home. Oxygen targets were really driving whether someone was admitted to the hospital or whether they received certain therapeutic options. But this was looking at a cohort at University of Michigan and a multi-center cohort as well. And they described occult hypoxemia, which was defined as an SpO2 between 92 and 96% with an oxygen arterial saturation of less than 88%. So what they found was that patients that identified as black had increased three times the increased rate of this occult hypoxemia than patients identified as white. This was true in the U of M cohort and in the multi-center cohort. But although this was given attention in 2020, this is not new. And Drs. Tobin and Gibran talk about this in a recent letter to the editor and European Respiratory Journal, discussing the inaccuracy of pulse oximetry in dark-skinned patients across 32 years. So they had initially shown this in 1990 and there are subsequent studies that have come out showing this discrepancy since then, but nothing really had changed. And what they say is that if data in 1990 had shown that pulse oximetry was less accurate in white patients than in black patients for some unknown reason, we wonder whether we would not have witnessed the publication of articles by manufacturers documenting vigorous efforts to resolve inferior performance of pulse oximetry across ethnic groups. And I think that's true because we didn't really see much change until recently. So I think there are several other additional challenges to consider. Religious and spiritual beliefs, withdrawal of life-sustaining measures may not be in lines with one's cultural or spiritual beliefs. And specifically, withholding feeding at the end of life can be traumatic for many patients and their families. Social support, families may not have the support to even be at the hospital during this time when we're having these discussions. Language, I think we can all appreciate that will impact anybody's care during their entire hospitalization. Education and financial considerations. And I think we talk about education and medical literacy a lot, but I think in general, regardless of who the patient is, we are not good at this and we can be better. And really this book, I encourage everyone to read it. It has changed the way that I practice medicine. Dr. Rana Audish is one of our colleagues in a pulmonary critical care physician at Henry Ford Hospital in Detroit. And in her book, she discusses her critical illness when she was seven months pregnant, when she had a ruptured hepatic adenoma that led to a cardiac arrest. She lost her infant and multisystem organ failure. And she describes the deficits in communication and lack of empathy she faced during her care and recovery in her own hospital where she was a critical care physician. So if she's dealing with this, then we know that patients that are disadvantaged are dealing with it as a much higher level. And like I mentioned, her story has impacted how I practice medicine. And I think that we can all be better about communication, showing empathy and being kind, especially in the ICU. So to summarize, racial disparities throughout healthcare. And I think what's sad to me is that we know that we're failing our minorities and specifically black patients throughout all of healthcare and even in the end of life, we need to be better. And we must examine our own implicit biases when caring for all patients and assess how this may impact their care. In order to improve end of life care, we got to take several factors into consideration prior to initiating discussions with a grieving family and during the process of losing a loved one. Thank you for your time. Thank you. All right, so first of all, thanks for being here, and thanks for Dr. Chen, my other friend Dr. Trivedi, Paige, and my colleagues here for giving me a voice here to represent the respiratory therapist perspective in this important time. So my name is Brady Scott, I'm an associate professor and the program director of the respiratory care program at Rush University. So here again, and so we're going to start immediately with a question. So I'm going to ask you, so let's gauge your engagement with respiratory therapists in compassionate extubation and end-of-life care. A, honestly, I do not have any discussion with RTs. I put in the order, RTs do their thing, it's a task for them. Two, I would love to have the RTs be more engaged in this process, but honestly, they do not seem that interested, or they're too busy, you know, staffing's terrible everywhere across the country. It really depends on the RTs. Some are interested in the whole process, and I do my best to make sure their concerns are heard. Others, well, to be honest, it seems like a task to them. Let's see. D, our whole team, RTs, nursing, physicians, of course, and whoever else, pharmacy, all meet prior to extubation like this and discuss any concerns and overall plan. E, RTs are involved with this? I didn't know that. Tell me more, I don't even know what you're talking about. Do I go to the next screen, or does it come up on this one? Oh, here we go. Oh, sorry, there's a gnat up here. Sorry about that. A gnat just flew up my nose. I've never had that before on stage before. That's a first. Yeah, so it really depends on the RT, and I think that's, to be honest with you, that probably, I'm not at all surprised by that answer. I thought maybe there would be an answer on A. That seems to reflect some of the literature, but maybe in this room, everybody's here because this is what you do and you're interested in it, and so that's cool. All right, so let's move on. So, let me say that as a respiratory therapist, and again, I've been a respiratory therapist since 2001, so I've been around for a bit. Now, I'm in the academic side of our world, and I can tell you that, not surprisingly, extubation is quite common for the respiratory therapist. We do this literally every day, every single day, and it's part of our training. In terms of a co-arc, which is our accrediting body, you know, respiratory therapists, they're describing the scope of practice here, managing life support activities is within our scope of practice of our accreditation bodies. All in our textbooks, including ones I'm authors of, I literally have contributed to these textbooks, and I have not seen a single thing, nor did I write anything about compassion extubation, so I'm part to blame here. I could have probably brought it up, so now that Elaine has invited me into this world a bit more, I'm going to make sure we're going to get out there. So, textbooks, nothing, not even mentioned at all. The one that sells the most, the Pilbeams Mechanical Ventilation textbook, probably the most used in the country for our profession, nothing about compassionate extubation. Guidelines, they tell us how to do it, we know how to do it, we know how to extubate, we talk about extubating people, and when I think of extubation as an RT, it's to liberate from mechanical ventilation, maybe to get to go home. It's not this other version. So, we get guidelines of how to do critically ill adults, but it doesn't really guide us of what to do in this type of scenario. We even have in our own profession, we have guidelines about how to remove the endotracheal tube, about how to literally go through the process. On our exams, respiratory therapists are tested on our national board exams, so we have board exams that create licensure, just like your profession as well. It's there. You can see performing extubation is literally part of our exams, right at the bottom, I don't know if the light's showing up or not, right here at the bottom, right there. This is the exam matrix. Again, ensuring modification made to the respiratory care plan. I get literally exam questions on liberating from mechanical ventilation and extubation. But, I can tell you that it's all about the patient who just got better. That's who we learn how to extubate. So, I can tell you, and I am pretty confident with this, very confident, we are not well trained in compassionate extubation. We don't know what this means, we don't know how to do it, we haven't been talked to, our instructors didn't teach us, we didn't simulate it, most likely. Now, I realize that our professional accreditation bodies, they're not prescriptive, which means some programs actually may be doing it, and I'm going to commit, we'll start doing this better. Because I'm a little bit embarrassed that I'm here at CHESS doing this, but we're not doing this back home. So, we're going to have to fix that when we get back to the house. Right, so very little currently is being done to address compassionate extubation right now, but we're going to try to change that, and very little has been done to address coping mechanisms, and I'll talk more about that in just a second. So, what can RTs do? Well, I think if we do this well, you know, we do things like oral suctioning, removal of excessive secretions, you know, we remove the endotracheal tube and holder and tape, and one of the things, you know, if we're mentored by somebody who's done this correctly, we make sure that the tape marks and all those things are mitigated for the patient's family, it becomes better. We deflate, pull the tube, extubate these folks, and we dispose of this in an inconspicuous way. We do this while making sure the alarms aren't going off the ventilator. I've done this several times with patients' families in the room. I know that's not always a practice, but I've done it with them in the room, I've done it with them not in the room, I've seen various ways across the organizations that I've worked. Optimally, this can be done with two people. I can tell you this is a lot easier for me to do when I have a couple people help me out, just because if nothing else, I'm trying to keep the alarm from making so much noise at this time, especially when patients' families are around. So, we can do that. We can do things, I think, that we can contribute to making this a process, which is, as Dr. Trivedi has just really done a great job of explaining, it's so brutal, it's so hard for our patients' families. But, we can do this the best way we can to not add to that stress. But, what I wanted to do, and so I actually have struggled with this, because Dr. Chen invited me to come talk. I'm like, what do I talk about? If I have an audience, what do I say? Because I'm going to pull the tube, I'm going to do the best I can, so what do I say? So, what my message to you is, this is not so easy for everybody, for us. And so, what I hope we can do is I want to show the lived experiences of RTs through some qualitative research that's been done, and kind of frame this discussion real quick. I don't have a whole lot of time. I'm going to try to frame this out in something that maybe you can take back to your institution and try to improve. One of my messages is, your RTs are probably not trained in their academic training to do this well. They probably have never simulated it. If they've been in a situation in the ICU, maybe they were allowed to participate. But, they may be doing, they're asked to do something they may have never done before. They don't really even know the best way to go about this. All right? A recent really cool paper here that was published in Respiratory Care Journal in 2022 about the lived experience of respiratory therapists doing withdrawal of advanced life-sustaining therapies. These are busy slides. I'm happy to send this to you, or I can give you the reference for the paper. It's a great read. They have a bunch of themes. This is a qualitative study. They ask RTs about their experiences, the end of life. The impact of power relations. Some RTs felt underappreciated in their roles here. They're being asked to go in and withdraw life support, which is not easy for folks, right? But, they don't feel empowered to ask any questions. Or, people are treating it as a routine task for the RT, like giving a nebulizer. And, that's not viewed as a routine task by a lot of your respiratory therapists. I can't speak for all of them. Because, even in the same paper, some RTs are like, that doesn't bother me. You know, it's the physicians making a decision with the family. It doesn't bother me at all. And, I kind of feel that way. My friend, Dr. Mears, we've worked together for a long time. And, she noted yesterday how many times, how many examples of withdrawal of patients that I can name. I can remember. I can speak to. And, she said, you say it doesn't bother me. Look how many of these cases that you can break off the top of your head. I'm like, ooh, you're right. There's something here I don't understand. Right? So, another one is, again, underappreciating the RT's role here. Again, RTs feeling undervalued. Being called in the last minute for extubation, end of life. Some RTs even felt insulted by their limited involvement in the process. You're asking me to do this. You're not asking me anything about this patient I've been taking care of for two months. Right? And, so, and then wanting their voice to be heard. I think that goes without saying. And, again, I'm happy to send you these. I realize these slides are a hot mess. They're really busy. But, I just wanted to put a lot of stuff here. A bubble theme emerged here indicating RTs sought tools for better communication, education, and support. They're saying, we want to know how to do this. If you're going to ask me to do this, and my family members especially are going to be in the room, I want to do this right. And, as a matter of fact, these are the patients I've been involved in their care for three months. I know them. I extubated this patient already twice and we thought they were going to do okay. They're not doing okay. I got to know them. I want to do this better. Right? They emphasize the need for formal training and education. So, can you go back to your institution and actually create a simulation, create some sort of policy or something? Again, they're calling for well-established protocols. What are the expeditions? What do we do? If this patient does this, what do I do? How do you want me to do this? Again, we're just not trained on it. Some of your RTs may be. Mine are not. Ours are not. And, I got to fix that. I'll do it. All right? Tools to help communicate, support and educate the family. You know, what questions can I answer? Because I'm in there with them. If they ask me a question, do I have to run out and go get the doc? What am I able to say? Right? I'm uncomfortable here in some situations. Right? And, finally, the emotional involvement and exposure. You know, the theme was about the emotional aspects. It's the weight of the physical act. And, some of them acknowledge that there's an emotional weight here of withdrawing life support, of withdrawing the ventilator. And so, we've also, the importance in providing emotional support. And, thankfully, I've had even people like Paige and Elaine come to my classroom and talk about this because, as an educator, a couple years ago, I realized I was failing my students by not teaching them about emotional, these emotional aspects of our job. And, unfortunately, I learned that from a student who told me that. They didn't teach me this. They was me. I'm the program director. Right? All right. Deep ties. Again, we do get to know these people, just like you. You know, I've taken care of these people for a long time. All right. So, I've got to move on quick. So, I'm going to run out of time. Why does this matter? I don't know if you've heard about burnout. Rampant in my profession. Right? So, a lot of RTs are reporting severe burnout, a lot of emotional exhaustion. RTs are burning out, too. There's a lot of emotional exhaustion in that job. You know, I always say you never want an RT involved in your care, ever. But, obviously, I'm the person you never, ever want to ever see in your room. That means something's not right. Right? It's never a good find to have a bunch of RTs hovering around your room. Right? So, again, this has been studied a lot. So, what is, you know, 73% of RTs are experiencing burnout, and it's the lack of respect here, the lack of recognition. And I think this contributes that to a little bit. You know what, Brady? It's a task. Go pull that tube. You're like, it's just not a task for some people. Okay? Survey regarding end-of-life care. RTs are saying our school training, what we did have, was ineffective. You know, some got no training at all. So, the authors recommended more training for end-of-life care. Secondary distress in RTs. I'm going to move quick here. I didn't know what secondary distress was, to be honest with you. Again, tells me where my training's at. I didn't know what this was. But the secondary traumatic stress, effectively, is the stress resulting from helping or wanting to help somebody. Right? So, RTs are thought to be at risk. They did a study on this. And the conclusion was RTs are at a diagnostic level common of PTSD and secondary traumatic stress. Right? And, again, what stands out to me as to why, I don't know that every single time I do this I have an emotional day about it, to be honest with you. I've estimated so many people at the end of life. But I wonder if it's the repetitive exposure over and over and over and over We do it every day. I think I wonder if that's contributing. I'm not a psychologist, as all of you know, so I don't know. But, again, a student comment to me was made me think that we have to do better, that I have to do better, and I've actually asked Elaine and Paige to help me do this. I had a student during COVID right in our ICU tell me this. Nobody told me how many people would die in this profession. We talked about saving lives. We did not talk about how much death there would be. And I realized that was part of me. Again, why are RTs leaving practice? I don't know if your hospitals are having staffing problems. Mine are. Why are they leaving practice? Real quick. They're emotionally drained. Every day dealing with death. Had to go. I felt the stress. Well, I would cry every day before I go to work. Right? So there is a toll here on some people. So the main point here, RTs are experiencing quite a bit of death and dying, but we're not formally trained on end-of-life issues and compassion. My only ask of you, my message to you is if you are engaging or if you RTs are involved in this process at your hospital, please consider engaging them. Bring them into some discussions. Help train them what the expectations are. And, again, I think probably half your staff will be like, you know, Dr. Chen, why are you asking me this? I'm good. I've been doing this job for 20 years. I'm good. But I may not be the therapist that's two years out of school. Right? So you may have a different group. And I will say that I'm now aware of my former students that are struggling here, and I did not prepare them because I, too, felt that was, yeah, you'll just figure it out as it goes. But that was my experience, and I'm kind of projecting my experience on them, and I don't know that that's the best thing for them. I don't think it's the best thing for our patients. And, again, I'm happy to send you these slides. So thank you so much. Thank you. All right, I will be moving on to talk about symptoms and family expectations. Again, my name is Elaine Chen, and I am a pulmonary critical care as well as palliative care physician. So we will be talking about improving communication, recognizing risk factors for complicated grief, and optimizing symptom management. All right, so I'm going to start with a story. My friend called me up. Actually, she didn't call me. She texted me, and she said, hey, can we have a phone call, because who makes a phone call these days? And I remember it was a weekday. It was after work. I probably had some notes to write. I put my kids down, and I went down to the basement to try to find a place where I wouldn't wake up my kids but still had cell signal. OK, so she had just returned from a stressful and heartbreaking trip to California. Her mother had been hospitalized a few times over the prior year, but things were seemingly going well. She was hospitalized again, and she was getting better and getting ready for discharge when all of a sudden, she became unstable and ended up in the ICU. My friend couldn't get a clear picture of what was going on from her dad's secondhand reports, but it sounded like things were not going well and that her mother might be dying. So she dropped everything, hopped on a plane from Chicago to get there. She rushed straight from the airport to the hospital just in time to say goodbye to her mother before she died. After her mom died, the doctor popped in, pronounced death, offered a few words of sympathy, and then walked out. The chaplain spent a good amount of time with her and really helped them feel supported and cared for. She wanted to speak with the doctor a little bit more to get more clarification about what happened, but she felt like she didn't have the opportunity and that her questions were not answered. She walked in late. It was the end of the course. I don't remember all the details. So Jennifer told me, or my friend told me a story about decompensated heart failure. Improving? Classic story we've all heard many times. Diuresis, whatever, and then a rapid deterioration into what sounded like sepsis and multi-organ failure, with a central line, vasopressors, renal replacement therapy, and mechanical ventilation. We see this every day. A standard, complex, rapid decompensation leading to death. Even though she couldn't give me the lab values, medication doses, test results, I knew what it looked and felt like, because I have seen it a thousand times. But it felt different this time, because I was hearing it over the phone and I could hear her grief and hurt and heartache, which I don't usually experience as I'm taking care of my dying patients. I know I wasn't there and I can't see the details, but based on the story you are telling me, it sounds like they did everything they could, they did everything right, and it sounds like they didn't miss anything big. She told me she was reassured and comforted. I thought about what I say and what I do for families, and what I don't say or don't do, and how often. So she was expressing grief. Grief is normal after a loved one's death. Everyone should experience this. What is complicated grief? Was she experiencing this? Griefs are estimated at 46 to 52 percent after an ICU death compared with 5 to 10 percent in the general population, so common in our families. It's a prolonged, intense grieving that affects physical and mental health and impacts on social and emotional well-being, and may include guilt, anger, denial, emotional numbness, or difficulty in engaging with activities. These are things that may lead to increased risk of complicated grief, vasopressors, dying while intubated, family disagreements, fighting about what's going on, living alone, the familial love, the families, being a spouse or partner of the deceased, problematic communication with physicians, do our patients or our families ever fight with us, and being present at the time of death, which I've always thought was relatively healing, but maybe not. And these are factors associated with decreased risk. Older age, patient declining ICU treatments, being prepared for death, and involved in end-of-life conversations. So expected deaths, where families have time to prepare, and the patient wants it or is ready for it, makes it better. And this is a systematic review that was published last year. So what can we do as a profession to try to decrease complicated grief? This was a cluster-randomized trial of physician and nurse interventions. It was a prospective, multi-center, cluster-randomized trial of 34 ICUs in France, where they recommended and implemented a three-step support strategy with the physician and or the nurse. And they hypothesized that this proactive intervention involving repeated meetings with relatives of patients dying after decision to withdraw or withhold life-sustaining therapy. So this is not before the decision, but after the decision, will decrease post-ICU burden and presence of prolonged grief disorder at six months after death. And they did find that their strategy decreased prolonged grief from 21% to 15%, significant and substantial. So what was involved in this three-step support strategy? Step one, in the time leading up to death, you prepare the family for the patient's imminent death. Talk to them. Give them opportunities to ask questions and express their emotions. Encourage the family to talk to the patient. Say goodbye. Discuss being present at death and involvement in the physical care and spiritual needs. Bringing in clergy from the family's faith community, helping wipe down their eyes, suction their mouths, all of these things that help them be more present and involved. So during the dying process, during the withdrawal of life support, being present, walking into the room, meeting the family's emotional needs, help them support them along their spiritual practices, and actively listening, clarifying, and answering questions, talking about the death event and what it looks like when death is more imminent. And then, after the patient's death, express condolences, encourage questions about the ICU stay, address doubts, offer a visit for the family with the ICU team later on, and showing empathy and giving relatives opportunities to express feelings. So these are three different steps during the dying process. And to be honest, it's very difficult and unusual for a single physician and nurse to be involved in all three of these processes. So if you're only present for one or two of these steps, I encourage you to be present and be available. The authors found a significant increase in family conferences held, physician and nurses entering the room during this time. And we're all guilty of it, I think, myself included. They're dying. It's a dying process. We want to give them space to grieve, space to be with the loved ones. But they found that going in and asking questions, just offering support was helpful, that they don't feel abandoned that way. And also, an increase in the nurse and physician meeting with the family after death. I think that we do a good job of this in our institution, but we don't actually count it. And my guess is that we're not as good as we think we are. So we must be intentional about spending time with families. For relatively unexpected deaths, offer more explanations if the family has questions. For all patients, I like to talk to the families about the patient as a person when they were well. What gave them joy? What did they love? What were our interactions? Who did they love? What did they do together? Bring memories into the room, and that always gives families a bit of joy. And also, allow silence and space for grief. How often can we sit down and just be present for five or 10 extra minutes? It's a lot of time. There's other patients waiting for us, needing us, paperwork to do, notes to write, medical examiners to call, lots of logistics, but being present can be so helpful. When patients are talking about how much time they might have left, we can talk about Abby's family and their experience after withdrawal of life support. How much time do they have? We never know, and I always talk about the uncertainty. I can't predict how long. Sometimes people go much shorter. Sometimes people go much longer. But we have some ideas, right? We know that somebody on 15 of PEEP and 100% FIO2 is not going to survive a long time. Five of PEEP, 30% FIO2, their lungs are not their problem. In our experience, most patients in your loved one's situation have minutes to hours, hours to days, days to weeks to live. And we have an idea, and we should try to give them that guidance. Now talking a little bit more about the time of the dying process, families don't know these things. Blood pressure drops, right? We know these things. I have a typical spiel where I go through all of these in order. The heart rate may go up. It may go down. Do we still have the monitor on? You may see that. Try not to look at the monitor. Focus on the patient, their face, their comfort, the temperature when you're holding their hand or embracing them. It may be very, very cold, very, very warm. The skin may be flushed, or it may be blue and pale. It may be cool. There may be some mottling. There may be clamminess. All of these are common things. And then I talk about the breathing patterns, which can be a little bit scary for families as they watch their patients change their breathing. They're breathing really, really fast. Are they in distress? No, they're not. They've got these long pauses. Are they still alive? What is this rattling that's going on? And then symptoms of dyspnea, pain, anxiety, delirium, death rattle. These are all things for us to think about. I'm not going into a ton of detail on these today, but I have some quick questions to just get us everybody reengaged. Which of the following is best for treating dyspnea at the end of life? All right, I'm going to move on and see what we're all thinking. So we've got a variety, morphine drip, fentanyl patch, dilaudid, push, morphine orally are all equally effective. And the correct answer is that all are equally effective as far as we know. And here's some data to support that. So this was a systematic review published just earlier this year discussing opioids for dyspnea at the end of life. And mostly what we found highlighted is that this is extremely difficult to study because dyspnea is defined by self-report and end of life research is of course very, very difficult. There were different papers studying all of these different types of opioids, morphine, fentanyl, oxycodone, and hydromorphone that are among the opioids that have been studied. And all of them were shown to be effective, but there was no consensus or standardization regarding agent or dosing. So pick an opioid, think about what agents, what method of delivery will be effective in our cacectic or febrile patients. Fentanyl patches are obviously less preferred, which is probably why we had zero people choosing them. Okay. Another quick question about the death rattle. What should we do to manage it? All right, so we've got frequent suctioning recommended to decrease pooling. It's actually recommended to only suction once or twice. Regarding supine positioning, really lateral positioning is recommended to allow the secretions to drain into the cheeks and out of the back of the throat. Glycopyrrole, you guys are all correct, does not cross the blood-brain barrier, causing less sedation than the other anticholinergics, which may be important in the setting of somebody who has more than a few hours to survive. It's also available IV and quickly effective, though if it is effective or not is a subject for another debate. And atropine eyedrops actually can be given, but we usually give them sublingually rather than in the eyes. So this was a systematic review published about nine years ago about treatment of the death rattle, which is noisy respiratory tract secretions in the dying patient, ranging from 12% to 92% in various studies with a weighted mean of 35%. And the practices I just mentioned are recommended, but the data is not strong for any of them. In terms of counseling, we should be reassuring families, giving them some guidance with how to interact with the patients, and encouraging that they touch their loved one, their family member, and offer comforting words. Why might the doctor not have engaged? Maybe he didn't know the case well, he or she. Maybe they were the covering doctor, it was nighttime, how often have you covered a night shift, pronounced a patient who was dying, and then offered a couple words and walked away. Because you didn't know anything about the patient, you didn't know the family. But my friend just walked into the room at the very end. She didn't know who the regular doctor was. Maybe they were uncomfortable, maybe they had already spent a lot of time with the other families, with the patient's husband. Maybe it's a personal issue and I'm just having a bad day and I can't do this right now. For me, I as a physician, caring for dying patients takes a toll on us. Sometimes we need a break. There was a lovely editorial published a couple months ago about some of this pain and grief in chest. I would offer that sometimes spending a little time with family can be healing and rehumanizing for us as well. And as we all know, death is not a failure because everybody dies. I end with this, with this hurt, and move on to Paige, who will offer us some ways to heal. Hi, I'm Paige and I'm the chaplain on the team. I'm really glad to join you today. We're going to be talking. I work at Rush University Medical Center with everyone else and I have nothing to disclose. My first plug for you is to get to know your chaplain. Maybe you work with them all the time and you know them really, really well, and maybe you think we're like nice-ish volunteers walking around, but at Rush University Medical Center, we have a robust clinical pastoral education program, which means we have interns, residents who all have their master's degree, board-certified staff chaplains who either have a master's or a doctorate. Our chairperson is a bioethicist and we have researcher chaplains as well. So get to know them so that you can calibrate your collaborative work together. Meaning making, all right? So what do we do at end of life? Meaning making. Everyone, you and me and the person at the bus stop and everyone hanging out at the beach, we're all making meaning all of the time. Like we're all just like fleshy, meaning-making people. That's like what we do. Many people call that meaning-making system religion, but not everybody. In fact, increasingly so. And just because you might not use religion as your primary meaning-making framework doesn't mean you're not making meaning. Everyone, everyone, everyone's making meaning all the time. And so one of our tasks is to attend to the ways people are making meaning in the room. So your chaplain is likely grounded. Every human is likely grounded in their own meaning-making system. And that is not what we bring into the room when we meet someone. Our job is to meet someone where they are, to tease out of them, to listen carefully to the meaning-making system that they're utilizing. The one they walked in with long before I had ever met them. The coping strategies that they might have trouble accessing because of profound grief and mirroring it back to them, that they might weave even this brokenness, even this awful grief moment back into the narrative of their life. And so we're doing that a lot through life review, paying attention. Like Elaine said, tell me about who they are. So some of this is like dignity therapy. I don't know how much you know about dignity therapy. It's a guy, Harvey Chachanov out of Canada, out of Winnipeg. He's really amazing. You should look it up. But legacy leaving, right? So what is this? Who were they? What brought them joy? What did they love in this place? What were they most proud of? I don't shy away from hard stories. They might have hard stories to share, and that's okay too. Many of us do. And attending to that and weaving that back in. Spiritual assessments. So spiritual assessments are something chaplains are doing all the time. This is often much more applicable during sort of while they're alive. But we do this at end of life as well. In fact, you can too. And the one that I'm going to commend to you is FICA. Maybe you've heard of it. This is actually developed by a doctor out of George Washington Institute for Spirituality and Health. So Dr. Christina Paholsky developed this. Go to the GWISH website. They have like a million tools and modules. It's fantastic and really great. I love it a lot. But FICA is the easiest one to remember, right? F, faith. What's their meaning-making system? I, important. Is it super important to them or not very important to them? C, community. Who are their people? A, how would they like it addressed in that moment or in their care while they're with you in the hospital? So sort of this isn't a checklist. Like you're like, tell me about your faith or your meaning-making. Like this is just about the ways in which you pay attention while you're having normal conversation and sort of keeping that in your mind so that you can utilize it and also refer to your wonderful chaplain. So what can you do at end of life? So probably not you, maybe just a colleague of yours can relate to this impulse, right? Like your job was to fix it and it can feel hard, like really hard when that wasn't the outcome and it was everyone's hoped for outcome was to fix it. And it can feel like I just need to slow walk out of that room. And so while you're fighting that impulse to slow walk out of the room, I want to relieve you of the burden. No family expects you to be their chaplain. No family expects you to be their therapist or their best friend. They just want you to be a human. They know you're their doctor. They know you're their respiratory therapist and clinician. They just want you to be a human because in their humanness, their raw grieving humanness, they just want to connect with you. And so this is about you can say one thing, two things while you're fighting that urge to slow walk out of the room, relax your shoulders, attend to the tone of your voice and make eye contact, say one thing that you remember about them. Every day that I walked into your father's room, I know he was in so much pain, but he always offered me a smile and I'll remember that. Even if you didn't get to know them well, I didn't get to know your sister very well, but it's been an honor to meet her through you. And I can tell by the notes in the room that she was really well loved. So whether you knew them really well, whether you just met them that day, you can still sort of attend to that moment. In fact, you don't have to say a billion things. You might undo the really tender, lovely thing that you did. So relieve yourself of the burden of having to do everything, but resist that temptation to sort of just leave the room because they're looking for your humanity. You might know research of Brene Brown. This is just about meeting people where they are, right? Offer them your vulnerability. Offer them your humanity and your empathy, just like my colleagues have offered. I want to offer, so we're going to talk about burnout. We've already talked about it quite a bit. So this is important. So it's important to realize that, so Vivek Murthy, burnout is a shift from a me problem to a we problem. The original researchers, this was just starting to get researched in the 1970s. So this is Christina Maslach and Herbert Frudenberger. Christina Maslach, in particular, talked about the individual versus the structural realities of burnout, and I think this is sort of under-talked about. We talk a lot about the individual pieces, and I'm not going to undo that for any of you. I think it's important to meditate and stay connected to your community and pay attention to sort of your individual resilience mechanisms. If you are not in a workplace that is structurally set up for your thriving and flourishing, your individual mechanisms will fail. And so this is a message for leadership. If you are in the we, this is a message for us. We must collectively work to make our workplaces spaces for each of us to flourish and thrive while teaching us how to individually have resilience. So these things need to be deeply partnered, and it is important to lift up. This is a we problem. With that being said, I am going to offer two specific images. And these are the images that I want to leave with you. So compartmentalization, I'm not going to take it away from you. It has its place. It's super important. Compartmentalization is what helps us not ugly cry in every room I go in, right? Every day I go to work, every day you go to work, is someone else's worst day of their life. It's a lot. And so we need compartmentalization to be able to keep going throughout our day. The over and over and over and over that Brady talked about is so real. And so we do this to help keep ourselves going. But we need to be able to partner it with ways to metabolize it. We need to unload it. Your ship is going to sink. It's going to tip over at best. If we don't figure out ways to metabolize the beautiful, important, difficult stories that we walk alongside. So you and your team will have your own ways of doing this. Some people take off their lab coat and take a deep breath and think of the names of the folks that they've walked alongside and sort of shake that off. The adult palliative care team that I work alongside, we do it a little more formally together. So every Friday, after we do our table rounds, I lead our group in bereavement rounds. We read a list of every individual that we've walked alongside since the last Friday who has died and anything we might remember about them. And so I read their names and we talk about them. Sometimes my colleagues will only give me clinical information. They had this diagnosis and this is what happened and they came from an outside hospital. I very gently ask some of those follow-up questions. Who are their people? What else did we know about them? Oh, well, we sort of evoke those stories and let them sit in the room. If we had tons of time, I would do this with you, but I'll invite you mentally to think about the people you've walked alongside recently who have died, anything you might remember about them. And then at the end, I summarize and it sounds a little something like this. On this Friday, we take a brief moment to pause and lift up and remember Chaba, Dirk, Joanne, Mary, Mark, Nelson, and Julia. We got to know them as a grandmother, a spouse, a brother, a son, an uncle, a cousin. But we know they were many things to many people. They were likely colleagues, neighbors, confidants, best friends. We might have only gotten to know a sliver of their lives. We know that some of them made meaning through their faith. One in particular learned their faith through their grandmother and passed it down through her family. Another was known as the life of the party. One was a Chicago public school teacher and taught for her entire career. Another loved to bake and lived exclusively for his granddaughter. Some had really hard stories, experienced a lot of pain and complicated relationships. Some were able to draw near and have their families nearby them at the end of life, and others were not able to have that. We give thanks for the fullness of their lives, that which we knew and that which we didn't, for all of the good that they poured into the world, for the love and the nurture and the joy and the compassion that they poured into the places and spaces and people that they knew here in this world, because those qualities remain. We wish and hope for a sense of comfort to surround those who wish they were still here, those whose hearts are broken, who were not ready to say goodbye. May they have communities of care to hold them close, to journey alongside them in all that their hearts feel. And I give thanks for this team, inside and outside this room, who make it your business to lift up the dignity and humanity of each of these individuals, to learn their stories, to see them in the fullness of who they are. May each of us continue to become better practitioners because of the ways we've walked alongside these stories. May it deepen the wells within us that we might have a greater capacity to attend to the stories that are yet to come, the ones we'll meet today and the ones in the week to come. And then I read a poem and we go on our way for a Friday. You will find your own ways to metabolize it. That is one way to take a brief moment to dig into the humanity and say goodbye so that you might meet the stories that are yet to come. Partner your compartmentalizing with a way to metabolize it. My very last image for you is that we need a buoy, okay? We need something to keep us afloat, joy. This will be different for each of us as well. What is your plumb line? What is that thing that you hold on to that gives you joy and keeps you afloat? And this is not about toxic positivity. This is about knowing that when we meet others in their depths, we're not going to stay there. We have something to keep us afloat in these ways. This is about having something that we can hold on to so that we might actually feel safe enough to draw near, to reach those depths, to access our vulnerability and empathy, right? Archbishop Desmond Tutu puts it perfectly, discovering more joy does not, I am sorry to say, save us from the inevitability of hardship or heartbreak. In fact, we may cry more easily too, but we'll laugh more easily too. Perhaps we're just more alive. Yet as we discover more joy, we can face more suffering in a way that enables rather than embitters. We have hardship without becoming hard. We have heartbreak without being broken. Heartbreak without being broken. I will, we have time, yeah. If you'll indulge me, I'll read you a 30-second poem to close us as I do our palliative team. This is Ada Lamone. I don't know if you know her. She was our poet laureate. She's amazing. Get her stuff. This is called The Raincoat. When the doctor suggested surgery and a brace for all my youngest years, my parents scrambled to take me to massage therapy, deep tissue work, osteopathy, and soon my crooked spine unspooled a bit, I could breathe again and move more in a body unclouded by pain. My mom would tell me to sing songs to her, the whole 45-minute drive to Middle Two Rock Road and 45 minutes back from physical therapy. She'd say that even my voice sounded unfettered by my spine afterward. So I sang and I sang because I thought she liked it. I never asked her what she gave up to drive me or how her day was before this chore. Today, at her age, I was driving myself home from yet another spine appointment, singing along to some maudlin but solid song on the radio. And I saw a mom take her raincoat off and give it to her young daughter when a storm took over the afternoon. My God, I thought. My whole life I've been under her raincoat, thinking it was somehow a marvel that I never got wet. May we each remember to ask about the stories that have come before we met them. I give thanks for the ways in which you have been shelter for people during their storms. And I hope for you, people and places that are shelters for you, while you do this beautiful and hard work, day in and day out. Thank you. Thank you. Paige is always so powerful and we're so grateful for her. We've gone over, but we'll be here for questions if you have any.

racial disparities

end-of-life care

symptom management

spiritual care

effective communication

respiratory therapists

compassionate care

training and support

managing symptoms

family expectations