 Good afternoon, why don't we go out and get started because we have a fantastic talk today by Dr. Ann Mosenthal. Thank you all for coming, those who came on time, and I'm sure there will be some stragglers who have clinical responsibilities or other duties that brings them in. So this is the seventh in our year-long series, marching up to March 1st, 2018 when the Adult Trauma Center at the University of Chicago Medicine opened. It's a series that focuses on ethical issues in violence, trauma, and trauma surgery, and the prior six discussants, lead, lecturers, participants at the podium, but all of you have been nothing but extraordinary. I humbly include myself among those people, that's a joke, but actually more foundationally I think we have an incredible opportunity today to tackle an area that is often ignored but inevitable. No one gets out of life alive, life is 100% mortal, but we often are challenged by how we address the end of life, and Dr. Mosenthal has been a revolutionary leader in this space in very brief, in terms of background, Dr. Mosenthal currently serves as a Benjamin Rush, Jr., endowed chair and professor of the Department of Surgery at Rutgers, New Jersey Medical School, and for those who pay attention to seismic changes, there's a lot of seismic changes going on in New Jersey in terms of how academic affiliations and community partnerships are evolving with many players consolidating in a times-fragmented healthcare system, but by way of initial background, Dr. Mosenthal received a medical degree at Dartmouth Medical School before completing her surgical training in University of Massachusetts in Worcester, when I was in Massachusetts, we call that Worcester, I didn't know any better, but it's actually Worcester, and she then went on to do a critical, surgical critical care fellowship at Master's General Hospital before moving south to New Jersey, where she's actually risen through the ranks from assistant professor to now chair of that department, and one of the many claims to fame of Dr. Mosenthal is that she became a chair who happened to be female, that's the way I like to define it, before Me Too campaigns or before the incredible Look Like Me Surgeon campaigns around what the face of excellence in surgery exemplifies, so thank you Dr. Mosenthal for your stellar leadership in that space, but moreover she has helped to create a new field. She is boarded in both, or actually triple boarded in surgery, surgical critical care, and palliative care, and has helped among many, including at the Pringle Mill in the room, advance the space related to linking surgery, palliative care, and critical care. She has had multiple important roles and is the founding director of the first division of palliative care in surgery in the nation, has served on multiple advisory roles, including chairing the American College of Surgeons Committee on Surgical Palliative Care, and a member of the advisory board of the Center to Advance Palliative Care. And among many other things, one of the things that I think is most notable is her interdisciplinary collaborative work, most notably the Project on Death in America program, which touches so many different aspects of healthcare in America at a time when there's such a focus on adding value, and that includes value at the end of life. She has been awarded multiple awards over the years, most notably I will add the inspirational physician by the American Medical Association Woman Physician Section, and this is not an obituary even those that end the life discussion and talk, so I'm sure your parents would be proud as would your children as well as your spouse, but her talk without further ado is entitled Palliative Care and Trauma, Violence, and Ethics of Care. Please join us in a warm welcome. Well, thank you. That was the most wonderful introduction that I've ever had. I really appreciate it. It is really an honor to be here. I have heard much about the McLean Center for Ethics, and I have been very excited to hear that there's going to be a new trauma center here, and so it's really a convergence of all the things that are really important to me, so I'm very pleased to be here, and my parents would be proud. However, my mother would really object to that photograph of me. I don't know where you got it, but it's terrible. Really? I think that it was a candidate at the ACS recently, and I have to figure out who took it. Anyway, so other than that, it's all over. So I am going to talk about palliative care and trauma, a little bit about violence, and a fair amount about ethics. I am not an ethicist. I am, however, a palliative medicine physician, and my one disclosure is that I am on the board to write the exam questions, so Pringle, you will not get any of the answers from me. And otherwise, I have funding from PCORI with Gretchen Schwerze, who you probably know. So this is where I come from, Newark, New Jersey. I am a trauma surgeon, as you know, and this is our trauma center. Newark, New Jersey has a reputation probably amongst all of yourselves as being a gritty northern city. We think about the Sopranos. We think about violence and all the problems that go with it, but actually on the bottom right is Branch Book Park during Sherry Blossom season. It's quite beautiful, and we have a beautiful skyline on occasion. This is the other side of Newark. We indeed have a serious gang problem. Those are the red breed gorillas. We have a lot of violence intervention issues, and people that go out and try to work with the gangs, and we have a lot of urban blight and all the issues that go with that. Our trauma center serves about, we have about 3,000 activations a year, 1.8 million people in northern New Jersey, so it is not just Newark. It's also the surrounding suburbs, the highways, the port, the Newark airport. This is the real side of Newark, which is a community just like the one that you all live in. There are people having urban gardens, taking their children to school, and going to work, and that is frankly most of what our trauma is about. We have the highest rate of pedestrian fatalities in the nation. That is our biggest problem, and everyone thinks our problem is violence. That is a problem, but we really have a much bigger problem related to motor vehicles. People walk to school, walk to work, and elderly are always getting hit by cars. I don't know why people can't cross the street without getting hit by a car. So that's where I come from, and that is how I got into palliative care, strangely enough. So how do we die? There's a lot of myths in the nation about how we die, and I think most of us imagine that we're going to get old and go nicely into the sunset and fade away like this woman in the picture. Many elderly people think about the end of life and hope that it's going to be pain-free and peaceful. There's been a lot of stuff in the lay press and a lot of public demand that we do a better job because we're not doing a very good job. And some of you may have read some of these books or seen some of these papers, and I'm sure you're all familiar with the fact that in healthcare that we provide, we are not doing a good job at the end of life care, and people are getting way more care than they actually wanted without even knowing it. I think one of the big changes in this space is Atul Gawande. I hope you've all read being mortal. It's really profound and very simple. The truth is that how we die in America, a lot of people die, at least in the Medicare age group, after having surgery. And Gretchen Schwarz, who was a McLean fellow, wrote this nice editorial about that fact that a significant number of elderly people are dying after they have surgery. This was featured in the New York Times, this study that in the final year of life, nearly one recipient in three had surgery in the last year of life, and one in five had surgery in the last month. And one can ask the question, was that really a benefit, painful, burdensome? And we don't know if they needed that surgery. They didn't need that surgery. One of the things that suggests that maybe we're doing too much or too little in some spaces is that there's a huge variability across the country. So in some regions, like the one I work in, there's a huge rate of surgery at the end of life, whereas places like Hawaii, there's much less. And the Midwest, there's much less. So we don't know the answer, but it is pause for thought. So how do we die from trauma? Turns out trauma, which we think of as a sudden, acute illness that happens, and then you die, is really not the case. And for sure, the, is this a pointer? Yes. For sure, the biggest death from trauma is in the first minutes. Those people don't present to the hospital or to care. The next group is in the first hours. We refer to the golden hour in trauma. And that is these two together are the biggest. And then there's a smaller group that go on and reach the hospital, have an ICU stay and go on to die before they leave the hospital. And then if we get out here, it turns out that there's a significant mortality years, weeks, months and years later, that is in excess of the general population. So trauma is in effect a chronic disease. And we certainly see this in Newark, where we see patients come again and again with another trauma. So this is a little bit different. And it's really a public health problem that we pay very little attention to. So it turns out that trauma is now the leading cause, the fifth leading cause of death in the elderly. This is the fastest growing group of trauma patients in the nation, partly because our demographic has shifted. And partly because trauma is now sort of the final common pathway of frail people who fall and have extensive serious illness and comorbidities, who we now can keep alive and functioning for a very long time. And they often exit the world after a trauma, not going peacefully in their bed. But what about young people? So you may be familiar with the statistic I find it shocking. Young men die from trauma. Black men until the age of 35, as you can see here, died from trauma. And then it's homicide, homicide, homicide until age 35. And it's heart disease at 35. That's a problem. White men, it's trauma, but it's not homicide. The second leading cause for white men is self-inflicted. So we have a serious problem. I mean, and young people are dying. For women, it's a little bit different. There's less homicide. But the leading cause of maternal mortality in the United States is actually homicide, which is a statistic that I just found out. And it's really shocking. That is not true in the rest of the Western world. No matter who you are and where you live, to lose a loved one from trauma, especially if its violence is a terrible, terrible event that is that one can never recover from. And this is the reason that I got into palliative care. So so many times I have as a trauma surgeon had to go out and speak to a mother or a father about their child who just died in the emergency room or in the operating room table. And I was woefully ill-prepared to do so when I came out of my training. And thinking about that propelled me to eventually do the grant that I did on the Project in Death in America to develop palliative care training and programs in trauma. One patient in particular is really the person who I think is responsible for getting me here today. And this is him. I won't tell you his real name. His name was, I will call him Johnny, for the purposes of this presentation. And I will tell you his story because in many ways it's my story. So in 1998 I was on trauma call the day before Halloween. And this young man came in. He had been shot three times with a shotgun. Once in the chest, once in the abdomen and once in the pelvis. He was about 22. Turns out that the reason he was shot is that he was robbing a bodega. And somehow the owner of the bodega got the shotgun away from him and shot him instead. He was not, as I learned to find out, a particularly upstanding citizen of the world and had a warrant out for his arrest, I think for murder. And upon his admission to the hospital he was under arrest. However, he was mortally wounded. I took him to the operating room and discovered that he had a huge amount of blood loss. And the one shotgun blast had gone directly through his pancreas in the head of the pancreas. So he almost died about 14 times that one night. I think he actually arrested on the table and we got him back. I was able to get him off the table to my surprise after a lot of blood and a lot of effort. And he went to the intensive care unit. Turns out he had a spinal cord injury at the thoracic level. He was paraplegic. He also had pelvic bleeding from some major organs. The next morning I was quite pleased with myself that I had saved this man. And I was quite pleased that I had saved a man who had a major pancreatic injury because we don't have those very often and usually people die. So I was quite pleased with myself when we presented at morning report only to have my colleague say, oh, you should have let him go because he's never going to survive. And this is ridiculous and he's never going to and I was determined to pull this guy through. So I operated on him about 40 more times. He almost died another 40 times. He had an open abdomen. He had malnutrition. He had every complication. He almost bled out of his femal artery which exploded following various procedures to try to revascularize his iliacs. He could not eat because his stomach was completely stapled off. But I got him through it. I got to know his family. He had 12 brothers and sisters. His family matriarch was his older sister who really ran things and every time he almost died I would go to her and say, I think this is it. I think I'm not going to be able to pull him through. And she would always say, just try. And I knew that he was going to live a life of misery if I could pull him through. But she would say he would want to live. So I did. And we pulled him through. He was in the hospital for nine months and eventually I sent him home. Fortunately, the criminal justice system decided that he would probably be too expensive to keep in incarcerated because he was on TPN. So he went home on home TPN and his girlfriend took care of him. He developed huge dacubid eye and essentially his lower extremities became gangrenous and he had to have amputations. And he was in and out of the hospital with sepsis and a lot of problems. After about a year and a half and actually it was about a month after I got this grant and the project on death in America, he got readmitted and was very near the end of life. And I finally sent him home on hospice with his sister, all of his children. He had four children and he died at home a year and a half after his injuries. And I began to think, what was I doing? Was that a great surgical success? Or was that an abysmal failure? Did I just waste all these resources on this guy who was never going to do well? Or was it a great case? And I really don't know. For him, was it worth it? He had such a will to live and he survived. He got a year and a half that he otherwise would not have had. But I saw the suffering. He came to my office every week for wound care and he would sometimes bring his little son who would see this man. He was a very vital man in the beginning, totally diminished with his huge wounds and amputations. And I thought, wow, this is a terrible burden on his family. But he was always positive. And just before he died, they actually went on a trip to Florida. So I don't know. And I thought, is this trauma surgery or is this palliative care? And it began to get me thinking that maybe these really might be the same. So this is how I began to think about how trauma and palliative care really should come together. So because we're talking about ethics, I ask the same question. And I ask of you. From an ethical perspective, what was this? Was this futility? Did I observe his autonomy? I think I did. But I'm not sure. Did I help him? Or did I do more harm? And from a justice standpoint in terms of society, did I waste a lot of resources on a man who most of the world did not appreciate? When I think about it from an ethic of care standpoint, I developed a relationship with this man over 18 months. He was my companion every day. I knew I knew him inside and out. And Eva was very difficult to work with and take care of. But in the end, we had a very close relationship and he trusted me. And I really took care of him. From a violence standpoint, why did this happen? The structural violence issues of what world did he come out of? Why was he robbing a bodega? Was he a victim or was he a perpetrator? And does it really matter? These are all the questions that I think his case brings. And I'm hopefully going to explore with you a little bit more. So what I hope to do is define what palliative care and trauma is from a clinical standpoint and also an ethical standpoint. Talk a little bit about the epidemiology and the palliative care disparities that we see as well as trauma disparities. And why is this hard? And it's really hard. And we talked about it today in various meetings with the fellows. I was really amazed to hear the diversity of thoughts and opinion and how hard this really, really is. And then talk a little bit about the challenges and some framework that how we can move forward. So what is palliative care? Palliative care means patient and family-centered care that optimizes quality of life. It actually, in this current definition, which is from the National Palliative Care Consortium, has nothing to do with prognosis. It doesn't say anything about dying. And it's really a kind of care that can be offered throughout the continuum of illness regardless of prognosis. It involves addressing the whole patient, physical, intellectual, spiritual, emotional, social, and to facilitate autonomy. There's a lot of definitions. These are some of the other ones. Live as well as possible for as long as possible. Live well until the end. I think that's what Atul Gawande says in his very profound book. It's not about having a good death. It's about living well until the end. It's also the best possible care at the worst time of one's life. Cecily Saunders, who is really probably the, certainly the founder of the hospice movement in the United Kingdom, she died about 10 years ago. She defined palliative care as the relief of total pain, physical, emotional, social, and spiritual. She was an amazing woman, actually a nurse before she became a physician. So when I was thinking about this in ethical framework, I started looking at what the ethic of care is. And it was interesting to me that palliative care in many ways kind of defines the ethic of care. Erica Sal, who was an internist and a physician who wrote a very seminal article in New England Journal about suffering, which, if you haven't read it, you should. But this is one that I think is so relevant to palliative care and to trauma care. Recovery from suffering often involves help, as though people who have lost parts of themselves can be sustained by the personhood of others until their own recovers. As physicians and healthcare providers, that's what we do. We lend strength. We were talking today, and I see Ann in the back of the room, was really opening our eyes about her work as a physical therapist with patients that we've sent out from the hospital. And she lends strength to help people recover. And I think that's so important part of what we do. So palliative care ethics, and this is Dr. Saunders again, talks about the relationship as being really important. And it's the individual in the context of the setting and the world that we find ourselves. So it's not just about the individual and the autonomy. It's about the relationship. And I won't read this quote. But the end of it is, their autonomy must be seen in the context of society as a whole. So I think there's a shift to it's not just the individual patient, it's their family, it's the healthcare providers, it's society. And that's what palliative care brings. She also talks about truth telling. And that truth telling again needs to be in the context of a relationship, not just information. And she refers to this pretty famous quote from John Dunn, that no man is an island. So the ethic of palliative care is a little different than what we think about in trauma care, which is very aggressive. And we save people and we cure them and we patch them up and we do amazing things with technology. And it's all about the individual person. And we have a sense of duty that at all costs we must save lives. And that as a trauma surgeon is how I was trained and what I believe. But we also have a duty to observe a patient's preferences and what do they really want in the context of their illness. The ethic of care, on the other hand, is that dying is really an important event, but it's also a natural one. As someone said, we're all going out of this life at the end of it, no matter what. And perhaps we need to shift our framework of what we're really doing here. People are in relationships in all of society. And to be socially isolated is one of the worst things that can happen to a person. And we need to care about the relationship, not just a contractual agreement. This is a wonderful book by Joseph Finns, who is a palliative medicine and an ethicist. He was for a long time at Cornell. And he talks about palliative care as an ethic of care in the context of a cultural milieu in society as well. And that the way to get there is through the patient-physician relationship and through excellent communication. And this to me is the aha, which is it's all good to be philosophical about it, but how do we make this happen? And the way we make it happen is by talking to our patients and having a dialogue. So palliative care on a practical level and an operational level is really care that's provided alongside disease modifying treatment. And there's now plenty of studies, certainly in cancer, that if you have palliative care alongside your curative therapy, you will live longer and have a better quality of life. So this is really the framework that I think we need to shift in trauma care, that we are doing palliative care and trauma care and resuscitation and curative therapy all together. And it's not an either or. It's both. So why palliative care and trauma? Because it's good for the patient and maybe it's what patients want. It's certainly good for the family and huge burdens on families to take care of survivors of trauma as well as to make decisions for those who die. The clinician imperative, we have moral distress and taking care of our patients and I heard a lot of that today in our conference. Quality, it's high quality care. It's patient centered. It's high value. And there's also an ethical imperative. We have an ethical imperative to observe the patient autonomy and to provide them the care that will benefit them and not harm them. And sometimes that's palliative care. So what do patients with serious illness want? There are a lot of studies now, mostly looking at elderly patients with serious or chronic illness such as cancer, dementia, vascular disease. They're really none in trauma. And they want what we want, which is pain and symptom control, relief of suffering. We don't want to pull on the dying process, have a sense of control, and most people don't want to burden their family. And we want to be able to strengthen our relationships. There's that relationship thing again. So lots of polls and most Americans, if given the choice in a philosophical discussion in the survey, would choose quality over quantity. That's not true for everybody. And we don't know who they are or who we are until we really think about it and we ask. What do family caregivers want? They want their loved ones wishes to be honored. They want to be included in the decisional process, but they don't want to be burdened. And they want help. They want help in all the practical things that go on with dying and the end of life and being seriously ill. And most of what they want has nothing to do with medical care. It's support and help in a practical way. What do we want? We want to give great care that's going to benefit somebody and we don't want to do harm. And we have significant moral distress if we do and we don't want to prolong suffering. I think none of us want to do that. The challenge is to tell which is which. And we don't want to do futile care. Society wants to avoid cost. And we say we want to avoid prolonging of dying, but we don't seem to be able to quite get there in a political sense. All of this is in conflict and it results in ethical conflicts and moral distress for us and families and people. So we really want equal access for all and we are certainly not there. We want everyone to have access to palliative care and hospice at the end of life and that includes trauma patients. And if you live in an environment and a context where that is likely to happen, then you need the same access. And we want to be sure that it's fair and just. But we have disparities. So we certainly have disparities in many, many ways in healthcare, but we do have disparities in palliative care and we're just beginning to understand that. So now as of, I think this was in 2015, 63% of hospitals have palliative care service. I know you have one here. 85% of large academic medical centers have one, but only 50% of safety net hospitals have palliative care. So that's only half. So that's a whole group right there. And it is clear that where you get your care, the culture of that hospital, we talked about this today, is really probably the major determinant of whether or not you get palliative care. There's a lot of studies on regional variation, but it's probably specific institutions that matter. So what about minorities? So there's a lot of work on this. There's less utilization of palliative care. There's certainly less utilization of hospice. There's also less access for the reasons that I just said. There's less access to opioids and pain management. There are clearly disparities in how we approach pain management based on race and ethnicity that we are just coming to understand and we need to do something about. There's poorer quality physician communication with their patients. And because most palliative care is focused on cancer still in hospice, clearly is focused on cancer. Minorities tend to die from things other than cancer. So the challenge is how can we get there? How can we bring palliative care into trauma? And there's a lot of challenges. There's challenges about the disease. There's challenges about the patient, the family, us, nurses, the system. There's surgical momentum and there's the issue of structural violence. So I'm going to talk a little bit about those. One of the challenges is we don't know who's going to die. We think that's a challenge. And that is a challenge in our practice because we think, oh, we're only going to do palliative care if we know they're going to die. And we all can argue about, oh, I know they're going to die or they're not going to die. And when do I know and how do I know? And the reality is that trauma of all things has a pretty well-defined prognostication scores and they're getting better and better. So injury severity score is very predictive of mortality. If you combine injury severity score with age, which I'm sorry to say is over 55 for those of you in the room that are like me, over 55, frailty is huge, huge, huge. And we're just beginning to understand that frailty is probably a more important predictor of outcome in elderly trauma patients than the injury itself. We're very good at glascoma scale and traumatic brain injury and knowing if you're going to die. And we're pretty good if you get blood transfusions and you're in shock, that's bad. And brain death is easy because you're dead. So you'd think we would have no problem, right? The problem is that functional outcomes we really don't know. So none of these things are very good for predicting what your functional outcome will be at a month, at six months, or a year. There's so much variability and a lot of things that the patient brings to the table are determinants of that. Whether you have access to rehabilitation, social determinants of health, all of these come to bear. And so even though we are pretty good at saying that you're going to die in the hospital, we are not good at whether you're going to die later or what your functional outcome will be. That's really important, particularly for a neurologic injury. So that's the challenge. Despite our certainty, we have a lot of uncertainty. So people want to know, the family wants to know in a traumatic brain injury, they just want to know when they're going to wake up. Are they ever going to wake up? That's what they want to know. Will she ever talk again? Will she ever walk again? And that's our challenge is how to manage those conversations. And then when people get angry, what do you mean they're never going to walk again? You never told me that. It's really hard to tell the truth because we don't want to take away hope. I hear that a lot when I talk to surgeons that, well, I don't want to take away hope. So what about the patient? So patients, the world believes that if you show up at the trauma center and they're going to believe it here, that you're going to save my life and you're going to fix it. And then after I have that operation, I'm going to tomorrow get up and go home and walk out of here and resume my life. That is not true. Some people believe it's better to die trying. So I want that operation even if it's probably not going to help because I feel some good about I tried. People think they're going to die on the OR table if they die, which is of course not what happens. Sudden trauma, everybody's unprepared. Nobody's expecting to have a trauma. Even the elderly frail patients that I have who are 95 and have fallen three times in the last six months, they're shocked that they might have a mortal injury. Violence is a whole other spectrum of unpreparedness, traumatic for the survivors, traumatic for the family, for society, and brings a whole set of baggage psychologically to the injury and the care. And of course an amputation and a spinal cord injury are huge loss, even if you live, these are huge losses and there's a bereavement that goes with it. So we don't have an opportunity to discuss, if you have an advanced directive, that the patient has a mortal wound and usually we're discussing it with the family. So most patients in the ICU, as you all probably know, if you work in the ICU, about 80 to 90 percent of the patients who are in the ICU do not have capacity to discuss their wishes. The family has their own set of issues, acute grief reaction to the news of death, acute grief reaction to the news of spinal cord injury, traumatic brain injury. I mean these are terrible, terrible things. And families go on to have significant PTSD themselves, anxiety, grief. Just having a stay in the ICU for a family member precipitates a whole host of psychological issues and health issues for the caregiver. How the news is delivered will be remembered for the rest of their lives. That's on us, we have to do it as well as possible. So the ethical issue is, how do we tell the truth with maintaining hope? And is it our responsibility to take care of the family? I would submit that the palliative care approach is yes, the family is part of the unit of care. There's huge uncertainty, despite our certainty, we have a lot of uncertainty and we do not help families by having 17 specialists and each of us says a different thing and each of us has a body part and the nephrologist says, oh their kidneys are better today and I see you guys say, oh this is worse today. It's very confusing and the families are burdened by having to make decisions and the role of the surrogate, we really need to explain to them over and over and over that they're to help us understand what the patient would want, not what they would want. And sometimes we have to take that burden on for ourselves. They have high emotional informational needs. We all have had the experience where I told them the bad news and they don't want to hear it. We need to tell them often. And there's a nice paper I think by Len Jacobs about how many people in the United States actually believe in miracles. It's like more than half the population and I've heard that many, many a time we're waiting for a miracle. So us surgeons have a unique complicated relationship with palliative care. We have a very intimate relationship with our patients that we've operated on. I had a very intimate relationship with the man that I just described for a year and a half and I put my all into it and I did not want him to die. And I felt a sense of failure when he did. Could I have done it better? If only I had XYZ. There's also the challenge, no one should bleed to death if they're in the hospital. I mean that should just never happen. But it does happen and it's really hard to preside over that. And we are the Asian of suffering in many ways. Maybe not so much in trauma that I didn't shoot them thing but in elective surgery we are. And it's hard to grapple with that and it's hard to shift into what would the patient want and I need to do palliative care. The emergency department also has these issues. We have a real rescue imperative. We have no relationship with the patient or the family. They showed up three minutes ago. We don't know if they have a DNR, if they have a post or most. And many of us who work in the emergency room it's about getting the patient through and palliative care takes too long. So it's easier to just default to intubate, resuscitate and move along than to actually ask these questions. And it's really hard to do good communication. And the nurses and the residents have a lot of moral distress. And I think we talked a little bit about that today. And we oftentimes have conflicts within our team between physicians, nurses, whoever. And it's hard to present a unified, compassionate approach to a family if we aren't all on the same page. And lastly our culture. So surgical culture to me is totally influenced by the morbidity mortality conference. And I'll get to that a little bit in how we try to craft some solutions that would affect that. But we, I don't know about your M&M but we talk about if they died, we talk about what we could have done differently and it was our fault. And we don't talk about maybe it was a good death or maybe they had great end of life care or maybe they were on the ventilator for a month when we all knew they were going to die and nobody did anything about it. So we have some room there for improvement. And we don't talk about outcomes that patients value. I mean patients don't really value 30-day mortality. They'd like to live six months or a year or five years. And we don't talk about quality of life. We don't talk about did that get struck to me actually relieve their obstruction and they could eat again. These are things that we need to think about and where palliative care I think has a role. So we thought about all of this at my trauma center. And when I was privileged to have a grant from the project on death in America, we decided that we needed to think about where was palliative care relevant for trauma patients. There was clearly a huge gap. So we create an integrated palliative care program in our ICU. It was mostly focused on trauma. We actually did it for all of our surgical ICU patients. But the biggest group were trauma patients. And we did a three-year project and we actually showed that we could decrease the non-beneficial life support that was used for people who died. And we had no change in mortality rate. So we all had this fear that if we were aggressive about palliative care that we would actually make people die. And all that happened was the same rate of people died. But they just died earlier with less weeks on the ventilator, more time on hospice, palliative care, and being able to talk and spend time with their families. That was a huge improvement we got. So we identified initially the gaps and we found that we had huge variability in the way we communicated around end of life, dependent on who was on call, who was in the ICU. It really didn't depend on the patients at all. And that's why we did this. So we put together a communication bundle. So that's the first part, which I'll tell you a little bit more about. And we also added a peer review to our trauma section meeting where we review our mortalities every month. And we added a little peer review about the quality event of life care. Was the communication good? Were the conversations started early enough? Was there withdrawal of life support appropriately? And as I said, we showed that we at least decreased the use of non-beneficial life support and less feudal care, so to speak. So this is what we created. We did a palliative care assessment within 24 hours. And I'll show you a little bit about what that was. And we have our palliative care team. It's a little unusual. We have bereavement counselors who are our counselors. And they came and did a family support intervention within 24 hours. They talked to the family. They identified who's the healthcare proxy. They offered support. Most of these families are in crisis. And we had a family meeting within 72 hours. All the literature in the ICU says that a family meeting should happen within 72 to 96 hours. And there's a lot of good data on that. In fact, there's quite a bit of evidence. We tried to identify early the people we thought were at high risk of dying and we paid attention to pain and symptom control. We had an order set that we implemented for people who were clearly on a palliative care track and had a DNR order. And in those days, it was on paper. And we did the peer review. So on admission, we actually asked the residents and the ICU residents and the nurses to answer this question. What is the likely outcome for this patient at discharge? Do you think they're going to be dead? Are they going to be dependent? This is basically a Glasgow outcome score for those of you that are familiar with trauma. And we asked that question really just as a prompt to get people to think. Well, if we think they're going to die, then we should be doing more aggressive palliative care now, not waiting until next week. And we did the peer review, as I mentioned. So this is what happened. This is just a little bit of the data from that time. The DNR orders were placed earlier. The withdrawal of life support went up and was also earlier. There was no change in mortality rate. We also had some qualitative data where we increased the discussions on rounds at the bedside about palliative care issues, family issues, pain management quite significantly. All of this is published in the Journal of Trauma paper from 2009, I think. So how did we manage to do that? Timing was really important. And I've come to believe even more important that doing this early, early, early, and especially in trauma patients is vitally important. The palliative care team was integrated. We didn't call a consult. They came every day. They rounded with us. They met with the families and they facilitated our meetings. We had interdisciplinary family meetings. I think the key to our success was that we had all the disciplines. So it wasn't just the doctor. It was a palliative care counselor, an APN. It was the nurse, hopefully. Sometimes we couldn't succeed on that. And it was truly a communication that was involved everybody. It really supports the family. They feel more comfortable. They ask better questions. And it helped with transition of care and other settings. So this is what was hard. And this is how we addressed it. I think the key is communication as early as possible to establish a trusting relationship and support the family. And then when three days later you think you're talking about a do not resuscitate, you have a relationship with somebody. And it's important to acknowledge the uncertainty of the outcomes right up front. This is what the best scenario would be. I'm worried that, you know, they could still die. I'm worried they may never wake up. You have to articulate these worries even if you're not certain about them. And our palliative care team did things like ask questions that the family doesn't know to ask. Like what does better look like? Or doctor, what are you saying? What are you recommending? Sometimes patients ask but they don't always. And I sometimes have asked or they ask to the family if your husband was here, what would he say he wanted? It's not about what the family wants. Families have a hard time with that. So there's a couple of studies, recent literature, about how we're doing on palliative care and trauma. And we're not doing so great as a nation. Most trauma centers, less than 35% of the deaths have palliative care services on board before they die. And there's even fewer patients who survive who have any kind of palliative care. So we're not doing so great. This is one paper by Emily Rivett who is a colorectal surgeon and a palliative care person. And this is from Vanderbilt, the top one. We did some follow-up studies at our place and we looked at how are we doing. We actually looked at the palliative performance scale, which I won't get into here, as a possible trigger. And we found it was correlated with mortality in elderly patients. So we did pretty well. You can see that the people who died, 90% of them had a palliative care consult or family meeting or some kind of goals of care discussion. But the people who were discharged in a functionally dependent state to a nursing home, et cetera, we didn't do so well. And all those people got feeding tubes and tracts and we just did them. So for us in our hospital, this is our area of improvement. In most trauma centers, this is still an issue. So I'm pleased to say that the American College of Surgeons and the Trauma Quality Improvement Program has embraced this and we spent the last year developing best practice guidelines for palliative care and trauma. Those were just released and I think they're posted on their website about two weeks ago. And the hope is that this is now a tool that you can use as you build your trauma center, that we can really move the needle on some of these gaps. The key messages are that, again, palliative care is delivered with trauma care in parallel. It's not in either or. The patient and the family are the unit of care. The family of trauma patients have huge needs and, optimally, it requires an interdisciplinary team. And that we all, as trauma surgeons, trauma nurses, advanced practice providers, the whole gamut, we all need to have basic skills in how to communicate and how to do this. To me, I think this is kind of an easy thing for trauma centers because trauma centers are based on having all the disciplines come to bear for the best care possible. And so I don't think this is really a reach. And as you're thinking about creating your trauma center, I urge you to keep this in mind. This is, again, the same picture of the concept that palliative care and focusing on patient-centered and family-centered needs is a continuum throughout the injury, the recovery, and hopefully years to come. So I think, so I'm just going to go over a piece of what's in there because this is essentially based, somewhat based on our work in what do you do, how do you move a patient through a palliative care program that's easy, simple, and can be integrated into care. So we propose this guideline. This is really, I think, best used for ICU patients, but it can be applied, for example, to all trauma patients if you think appropriate. So all trauma patients, when they get admitted, are by definition seriously ill. Everybody should have a healthcare proxy identified on a mission. And probably everybody, I mean, maybe you could argue that young people who have an isolated fracture don't need a question about an advanced directive, but why not? Everybody needs their pain assessed and treated. And every family, whether it's a minor trauma or a major one, needs some kind of support and informational support about what's next and what's happening in all of this. And so based on that, those are very basic things that should be happening. And then we do a screen for palliative care, which includes the prognostication, the surprise question. Is anybody familiar with the surprise question? Those of you that do palliative care probably are. Surprise question is, would you be surprised if this patient died within a year? Because if you aren't surprised, that means they're really hospice eligible virtually. And therefore you need to think, oh, they need palliative care. And then there's frailty assessments, which is only relevant for elderly over the age of 65. So what's the screen? The screen is really to identify the group of patients who would benefit from an early goals of care discussion. And it really should be based on your prognostication assessment, which should include the injuries, any preexisting conditions, age, frailty, and you kind of have to think in your mind, is this person likely to die in this hospitalization? And would I be surprised if they died in a year? And you can really sort this out. I think the next level is, is there a profound disability expected? Is it a neurologic injury or an amputation? And based on that screen, you can stratify patients into three categories. The first category is a negative screen, and those patients don't need palliative care. The next two categories are really people who have potentially life-threatening injuries who might die in the hospital, might die in the hospital, or a very frail elder. And the second category are those that you really expect to die, you know, who are going on to brain death, who have some severe disability and anticipated. These are some examples, which we don't have to go through. So what happens to those patients? So within 72 hours, there should be a conversation about do they have an advanced directive? There should be a family meeting to discuss what the prognosis is, what the goals are, things you might have a change in goals, and a discussion of code status. This is when it's time to think about time-limited trials, getting an official palliative care consult, if that's the way your system works. Some of this can be done by trauma providers themselves. And then there's those who are imminently dying, and they need an end-of-life care protocol, comfort measures, very focused conversations, DNR, and there the shift is pain and symptom relief is the priority. And one can contemplate hospice, organ donation, all of these are part of the discussions that would ensue. This is the whole thing put together. Everybody needs pain and symptom relief. Everybody needs, every family needs bereavement or support for themselves. What about the patient who dies in the ER? And I'll just go briefly through this. So dying in the ER from sudden trauma is not something we think about palliative care, but this is what got me into it, and it's really important. We need to know how to communicate bad news. We need to know about grief, how to manage grief in the moment. We need to understand, is it important for families to witness a resuscitation? Is it important for them to see the body? The answer mostly is yes, and we need to know how to deal with that because it all happens in five minutes. So I refer you to a fast fact, number 305, also in the Journal of Palliative Medicine, that we wrote that really outlines all the steps of how to prepare yourself for the conversation, the physical space, and how to deliver the bad news. And essentially the gist is that it's short. You give a warning shot, and you do it as compassionately as possible, and you have to say dead or died. You can't say past, or we lost him because some people, some cultures, you know, they don't understand what you're saying. And it, most families, it's very important for their prolonged grief and recovery to see the body. There's some controversy for many of us about if there's a lot of mutilation, is that okay? In general, you try to cover, and that's a whole other discussion. So the bottom line is mostly yes, particularly if it's a child. So getting back to my patient, after hearing all that, I guess I ask you, was his care, was it ethical? Did I, did we do, as his team, you're nodding, thank heavens? Did we do the right thing for him? Did I do the right thing for his family? I went to his funeral, and he actually had two parents who visited him once. And I, it was helpful to me to see all of these people who were grieving his loss. The, so I think it was good for, it was ethical for me. What about society? Did we, did we make an impact? I don't know. I'd like to think that he's one of the reasons I'm standing here today. So in an ethics of care framework, it was a lot about the relationship. It was a lot about him in the context of society and his world, in my world. It was also his autonomy. So he was very clear all the way along that he wanted every operation. He wanted every resuscitation. And even though I thought he had the worst quality of life possible, he did not think so. And he was a very proud man. And he did die surrounded by his family. So what about the cost? And in some, you know, I remember my colleague saying this is futile in the very beginning. I would say it's not. And we all have a relative interpretation of futility. I don't think this was non-beneficial care. He got a year and a half of life that was valuable to him. The class of society was huge. He was on home TPN for a year. And he was on Medicaid. So he was, you know, on the, on the dole, so to speak. What about the violence? This is huge. And this is an unaddressed problem that we need to address. He, we have huge disparities. I mean, this man could not go to rehabilitation in part because he was under arrest. In part because he didn't have benefits. And he stayed in the hospital for nine months because of that. And I think it significantly affected his recovery. He did not have, he did not learn how most spinal cord patients how to, you know, take care of himself. He didn't have access to all the bells and whistles in terms of wheelchairs, care, you know, turning. He had his fairly impoverished girlfriend taking care of him. That's not okay. And whether he, whether you think of him as a perpetrator of bad things or whether he was a victim, I think he was both. And I don't think that matters. But I think we have to think about all of those issues as we think about what's the right care for people. So I come back to, was this good palliative care? I think it was in many ways, although I wish it could have been better. Was it good trauma care? He survived. I got him out of the hospital. But it was a burden on his family. And it was a lot of care and work. So I just wanted to finish the story because I think it exemplifies all of these issues. He died, as I said, and I went to his funeral. He had 12 brothers and sisters, all of whom had many children. And in the ensuing few years, I took care of his nephew who was shot. I took care of the same nephew who was in a car accident. I took care of a different nephew. And one of his brothers was also admitted to the trauma service. I knew all of his family. And the really terrible thing was a few months ago, I was on trauma call again. And a young man came in in a motorcycle crash. And for reasons that I still don't understand, he arrested right in front of me and died. He was about 40. I went out to talk to his family. And this man's mother was this man's sister. And she fell into my arms. And she of course recognized me. And I had to tell her yet again that one of her family members had died from trauma. And so the story goes on. And this is the world that I live in. And I think you will soon to live in as well. Because certainly in Chicago, this is a family problem. It's an endemic problem. And it's a major public health problem. And hopefully palliative care can have some solution. So that's my... I want to start by saying I actually, I'm a cold, hard-ass trauma surgeon who had chills, as you told the story of Johnny. And how the story of Johnny is your story. It gives you pause. It should give us all pause. As well as how we're all interconnected. And you didn't expect to take care of that 40-year-old who is related to Johnny. I'm going to actually start with a selfish question before we open it up. Because I'm sure there's questions in the room. Because that was very rich talk. And I hope that we can take some of that and apply that here at the University of Chicago Medicine and Trauma Center. The primordial question for me is how do you take care of you and self-care? Because this burden is heavy. Well, that's a great question. Some of it I do by giving this talk. And a lot of it is sharing that experience with others, including my colleagues who experience the same. That's a really critical part. I mean, in terms of self-care overall, I do things for myself and exercise and all that stuff. But being able... And that I think is one of the things that has helped me from a palliative care standpoint is having colleagues who really do this day in and day out and think about death and how to do it better. And sometimes you just have to go in the room and cry on their shoulder. Or they cry on my shoulder. And we share that sorrow and sadness. And that really is helpful. And I think that is what got me through being a trauma surgeon, to be honest. Our question is from the room. Dr. Ken Wilson, one of our trauma faculty. Dr. Miller? Hi. Yeah. Well, I think the work you're doing is wonderful. Obviously, I'm sort of similarly aligned. From what I can tell, you're the only trauma center that has an embedded palliative service. Is that true? Are there...? Possibly. I don't think entirely. I think we were just talking about Oregon. I think there's a lot of culture of palliative care in their trauma service as well as overall. And I'm looking for David. You're right there. You can verify that or not. So I think it's shifting. I don't think by any stretch it's similar to ours. But there are more and more people who are starting to do it and embracing it. Yeah. But it's a... We've got a ways to go. I thoroughly enjoyed your talk. And I'm actually Ken Wilson that we met earlier. But one of the things that I recognize in these large urban centers is that there is structural violence all around the hospital. But somehow the hospital seems to become a sacred ground where people kind of respect that. Although they have structural violence, it seems to be spared from that. And my question is, as you mentioned, the conversation of family will remember forever. And so when you can't be the hero, you should almost have, in my opinion, have a scripted conversation as to why they died. And your slide went by very quickly. So the question is, who should be there and who should not be there when you have that conversation? Understanding that you're dealing with a situation that potentially has a very short fuse and a very big flashpoint. Are you talking about who should be there from the family or who should be there from the professional side? My team. So first of all, never do it alone. And ideally, there should be the doctor who can, and it doesn't have to be the attending. I mean, it should be the doctor who was there and can deliver the news in a compassionate way. So it could be the intern, but probably not because they're less experienced. And ideally a nurse. I mean, it would be great if you had a chaplain or a palliative care person, but usually it's two in the morning and we don't. Now, you may have that. At one point, we did have a pastor that we could call in and they would come in and do that conversation with us. But it's not good to wait. So I usually do it with a nurse. Sometimes a student comes because they want to see it. And maybe a nursing assistant, you know, somebody. So there's two or three people, but that's it. My experience, and this might be controversial, is that you do not want the police or security in the room. That is very inflammatory. And you really don't want 17 family members. You want one person who you think is the responsible party, which is, you know, often a mother, a wife or whatever. And you want to identify who those people are. I have been in situations where the family was, you know, 17 cousins, quote, and I mean, people will can be violent and violent is, you know, throwing things, etc. And you need to be, you need to position yourself so that you can get out of the room and allow people to act out whatever they're going to do. The other, in certain cultures, swooning and falling on the floor is very common and you need to just let them be on the floor and not try to yell at them that they should stand up. What I found most effective when there's a lot of screaming and, I mean, which there usually is, I mean, almost everybody is totally in shock and people get very violent is to say, I know you want to see him or her and if you calm down, we will let you come in and see your loved one. And usually sort of two by two or something like that. That usually gets people pulled themselves together. I don't know if that's helpful. Dr. Siegler, when is this videotape available? Because I want to distribute it widely. Okay, because I do think there's a lot of trauma information that's rich here that we need to get to a wider audience than the 70 or so people that are in the room. My next question is actually related to disparities. Minority groups, and I hate the word minority because actually that has a superior inferior context, which is actually incorrect. So groups that are other than groups that are often on the giving end of information in this space. One of the challenges that I've experienced over and over again, who happens to be an African-American trauma surgeon, is this issue that at the end of life, it is amazing to me how people's values, which are important and need to be valued for some communities, especially African-American ones, there's a demand for more at the end of life. What's the driver? Because in every other space with respect to health, there's often less. So at the end of life, there's desiring more. To be honest, I don't think we know the answer to that. There's a lot of theories. I can give you mine. The first, I mean, and this is true related to those people of other who are impoverished is the lack of access to healthcare historically and personally is huge. They just want to be cared for, and so that becomes the driver. I think that, and that's my experience. My other experience is that cultures that have a very strong faith background often rely on that way more than any information that physicians can provide. So my worldview of this is going to be a horrible quality of life or whatever is really not relevant because there's a strong faith and they're guided by that. And there's actually a few studies. This is regardless of ethnicity, race, whatever, that most families, the most important thing that drives their decisions around end of life is not what the physician said, but it's their cultural beliefs, their faith, and how their perception of the individual patient is like he's very strong, he's a fighter, all that kind of stuff is way more important to them and how they make decisions than anything we can tell them. And the last is that for some communities, life itself is so valuable. And it's not, and then quality might look bad to me or you, but it's so valuable that it's worth a lot. So is it on? Oh, it is on. Oh, wow, it is on. Okay. In your guidelines for palliative integration into trauma that you said were published and some of the screening questions, I was just interested in, did you choose a particular frailty screen or you said you screened for frailty, but I was wondering what the screen and why you chose that one out of the many that are available? We actually particularly didn't choose one because there's so many. And I think there's an appendix in the back that gives examples of different frailty scores. There's really no evidence that one's better than another and, you know, just as long as you do something. I mean, so if somebody's dying in front of me, you know, bleeding to death and whatever, they get resuscitated. That's what they do, what we do, no matter what, unless they come in waving their pulse, which I have never had anybody do that. So it's just, so that's the priority. I mean, my feeling is, and we talked about this with the fellows, is ethically withdrawing life support is the same as not starting. In other words, once you've started it, that doesn't mean you have to keep it. It's a time limited trial, whether the trial's five minutes or an hour or two days or whatever. They're the same. So I think in America we err on the side of aggressive life support until such time as we think that that's not a good idea. That's, I mean, in the, in the, if somebody is bleeding in front of you, you can't stop and discuss. You gotta go. You gotta open their chest, whatever you gotta do. Does that, I don't know if that... Dr. Mosenthal, thank you so much for that wonderful talk. My name is Charles Rhee. I'm actually one of the palliative care physicians here at University of Chicago. And I have a question with the, I would say every expanding scope of palliative care, one of the things you, you may mention of was even as our scope seems to be expanding, the availability of palliative care physicians is definitely in demand. We definitely have both the supply side as well as a provider side deficit. How, what guidance would you have in terms of how to bridge that gap between the demand and the actual supply? I guess my first response is that we all, those of us who are not palliative care physicians all the time, need to know how to do primary palliative care. And we need to be educated in it. And that's what the hope is with those guidelines is that accompanying it, we will have, you know, training programs, workshops to help people develop the basic communication skills that are relevant to your specialty. Because, because there just aren't enough. And, and I also think that on the flip side, you know, palliative care physician is not familiar with all of the issues of trauma care. Now, you could be because that could be part of your practice. So I think that's important. The second is that it's not just about doctors. There's a whole wealth of providers, nursing, pastoral care, social work, psychology, that bring a lot to the table. And you can build a team you don't need an official. Sometimes when I speak to palliative care audiences, they're not happy with that because it's all, you know, our billing paradigm is that you get a consult and you put it in a bill. But hopefully someday that will go away. But yeah. So when dealing with systemic inequalities and poverty that strongly impact recovery outcomes outside of the hospital, how best can healthcare providers work with those challenges, especially when taking advantage of the increased communication that palliative care along with trauma care provides? Well, the person sitting to your right can tell you a lot about it. Because we just had this discussion. I don't know. It's really a huge problem. We have these silos that, you know, those of us that live in the hospital, we don't know what happens to people after they leave. And Anne, who is a physical therapist, spoke very eloquently about those challenges. It's a real problem. I mean, we don't, we have this compartmentalization of what we pay for and that completely drives the care. And the solution is to change the way we pay for it. Because people are going out of the hospital and not, and always are not getting the care that they need. And most of the care from a palliative care standpoint in the world that's needed is not medical care. It's social support. People are socially isolated. They're depressed. They need a ride to the doctor. You know, people have to, many elderly spend, you know, three days a week going to the hospital, to the clinic to get some, whatever. They need help with getting their medication. They need financial support. They need physical therapy. They need respiratory therapy. They need things that address the social determinants of health, none of which the medical center is any good at dealing with. So I don't know the answer except that we got to change it. So you know, you and I philosophically agree. We invest a fair bit in the space related to what happens in the four walls of the hospital. But patients actually don't care what happens in four walls. They actually want to be able to recover holistically and regain a function if they lost function. And to be better than when the event that occurred, that they wished didn't occur, that occurred, can they recover to the best of their ability? And that journey continues way beyond the hospital and way beyond your ability to suture their damaged femoral artery. So I mean, I think that that is just, you know, the emotional, psychological, psychodynamic part as well as how do they integrate back into their community. So actually, in partial answer to your question, we just got a grant from a foundation in New Jersey to start a trauma survivorship clinic. And most of what we're going, the grant is going to pay for is not medical care, but health coach, social worker, an advanced practice nurse to, and we're going to have a peer to peer support program that will link both caregivers and the patient to other trauma patients. So I think that kind of program, which to me is palliative care, it's pushing palliative care out to helping survivors deal with all of the holistic, I think is the right word. So I think we need more of that. But of course, insurance doesn't pay for a lot of that. You have to have an encounter to, I'm hoping that we can develop some telehealth solutions, which I think is another place where there's a lot of opportunity to connect people. You know, there's all those social media with patients like me stuff that I think could really be used in trauma as well as lots of other things. So this goes the other direction. The ethics of end of life, what particularly prompts my question were the photos of people jumping out of the world trade towers. They knew they were going to die. And so they chose part of what makes your talk and this discussion so problematic to me is the ethics of how we help people die. I'm in religious circles where unfortunately it feels to me like keep them alive as long as we can. And I'm saying, why? So I just leave that image of people deciding to jump as a signal to us that many more people than possibly we realize are aware, in contrast to Johnny, that things are really at the end and they don't want to trouble their family or live a very awful life, even for six months. So it's a question, but a prerogative of the James Watson, one of my most difficult trauma patients in Boston was a woman young, recently married, who had told her husband she never wants to live as a quadriplegic, dove into a pool, broke her neck, paralyzed from the waist down, from the neck down. Last words before being intubated was, do not keep me alive. I'm not sure what the question is. So yeah, yeah. So I think to me it's that people choose and people have the right to choose in this culture. That's what autonomy is. But sometimes if we don't provide the social support, the medical support, the things that people really need, they may choose something that they wouldn't otherwise. In other words, they would choose an end that they might not otherwise choose if their suffering was addressed, whatever that is, if their social isolation was addressed. So I just throw that out. I mean, that to me is part of the role of society is that we have to care for people that are suffering, whether they're going to live till tomorrow or they're going to live six months or 20 years or whatever it is. We need to engage and we need to ponder it and help them deliberate in that decision and that choice. I think that's the role as physicians as well as palliative care so that people are sure they're going in the right path. I mean the World Trade Center, which I lived through, yes, I mean they only had two choices and none of them were good. But hopefully mostly it's not those two choices, I guess. I don't know if that answers your question or is just a philosophical approach. Dr. Moser thought that was a riveting, provocative, thought-provoking and enlightening journey. Thank you for the vulnerability of sharing, Johnny, and your story and we will be developing many stories here at the University of Chicago, Madison, so stay tuned.