 So now it's my privilege to introduce Kelly Michelson. Kelly Michelson is the Julia and David O'Line Professor of Bioethics and Medical Humanities at the Northwestern University Feinberg School of Medicine and the Director of the Center for Bioethics and Medical Humanities. She's an associate professor of pediatrics at Northwestern and an attending physician in the Division of Pediatric Critical Care at Lurie Children's Hospital, as well as the Director of the Institute for Public Health and Medicine. Kelly completed her ethics fellowship here with the McLean Center in 2010. And today, Kelly will give a talk entitled Bioethics Education in the Pediatric Intensive Care Unit Beyond End of Life Care Decision Making. Please join me in welcoming Kelly. Thanks, Laney. It's really great to be here. I haven't been down to U of C very much and I always love coming back. So thank you for the invitation. It's a thrill for me. So just to let you know about some grant funding that I have from PCORI and ACS and some other places but no other conflicts. So my goals for today are to describe some of the ethical issues that we encounter in the PICU. I'm not going to talk about slow codes. And then to describe at least two different approaches to teaching bioethics to clinicians who practice in the PICU. So this came about because when I was a fellow in the PICU, we were very fortunate to have monthly ethics discussions, a full hour dedicated to bioethics in the PICU, which I think is unique and I was grateful for it. But I was also frustrated because they were sort of structured like we'd all sit down, someone would identify a case that was happening and we'd kind of talk about it. And while it was good and important, I also found sort of a sense of like I wish I had a little bit more structure. And the cases often ended up being sort of similar cases because we do see issues where we talk about DNR and does it make sense? And kind of these end of life care things kept coming up. But what else was there? So when I took a position as an attending, I took over these discussions and had to think about what I wanted them to look like. And when I was thinking about it, there were sort of certain things that I wanted to make sure that they came across. And these were mostly directed towards fellows, but attendings would come. And as I continued to do this over the years, invited more and more people in the PICU, nurses, social workers, et cetera. So wanted to make sure to cover sort of fundamentals what I call Bioethics 101 on speed, some bread and butter topics, things that we see commonly in the PICU, talk about new things that are happening in bioethics, and then sort of more the human side of things. You know what? These are an old set of slides. Yeah. So I'm just going to keep talking. Do you want to continue? Sure. So the kind of what to teach I've sort of gone through, and the other thing was sort of how to teach them. And I wanted also to have sort of a mix of this. So we did kind of a combination of case-based discussions. And then we have included sort of what I call like piggybacking on other things happening. We've invited people in to present with us. And then also sort of the listen, read, sit, and think. So trying to focus on the human side. So I have a beautiful picture to show you of a quilt that my mother made. My point in showing you this beautiful picture is that I kind of think of this kind of approach like the quilt. This quilt is made of like all these different scraps of material that have been sitting around that are part of a bigger, more beautiful, bigger piece that was created for a different space. And when they come together, they form a picture made of all these different scraps. And I think that's kind of what our bioethics curriculum looks like over a couple of years. People sort of get a flavor for each of these different scraps. And my hope is that in the end they'll sort of come away with some sense of what it's all about. So this is the beautiful quilt. Thanks to my mom. Thank you for changing those. So I kind of already did this. I'm not going to go back and do it. So what I thought I'd do is kind of just give you a sense of the things that we go over and how we do it. And then if we have time, when do I finish? Oh, nice. OK, great. I will do something else. OK, so in terms of sort of general fundamentals, right, I wanted the fellows to come away with all these terms so that when they move on in their careers they can talk about what principles are, consequentialism, et cetera, et cetera. So these ideas usually fit quite well in sort of this case-based approach. We had a nine-year-old patient with a brain tumor who was unresponsive. The brain tumor was unresponsive to treatment and had become neurologically devastated but didn't meet brain death criteria. And the mother was very adamant that we continued to do everything that we could possibly do. And this met with a lot of challenge in our unit. So what we did for this particular case was we went through it with the lens of what would sort of a principalist approach take, how would a consequentialist look at this, et cetera, et cetera. So people get some exposure. Decision-making is a big part of the ICU. And there are sort of, again, some fundamental terms that I wanted all the fellows to have. So for this, we used a case of a 16-year-old with chronic granulomatous disease who was admitted with sepsis and kidney failure but was refusing care but also wanted to be a full code. And so this gave us an opportunity to think about each of these different things. And fortunately or unfortunately, these kinds of cases come up in the PICU with such regularity that we can take usually a case that's happening at that time. In terms of some of the bread and butter topics, transplantation is a big one. At my institution, we do all transplants except for lung transplants. And they bring up a lot of topics. Donation after circulatory death, which has been something that's developed during the course of my lifetime. We had a case of a 12-year-old who was brain dead after a suicide that gave us an opportunity to talk to, oh, well, that's actually not a good case for that. Anyway, decisions about listing patients for transplantation, a teenager with an intentional overdose who was in acute liver failure, neurologically devastated a patient who was in acute liver failure, and transplantation from a non-U.S. citizen. So again, as these cases come up, an opportunity to talk about transplantation. The other cases that I talk about are sort of other issues that come up in the course of working in the intensive care unit. And this gives us an opportunity to talk about research ethics. So for example, authorship. As someone who does research and mentors, young trainees, this comes up every year. And how do you think about authorship and what are the ethical issues around authorship? Not something that is necessarily specific to the ICU, but that's very important. Some of the other things that have come up in our unit are issues related to conflicting research studies. We do a lot of multi-center research, as well as investigator-initiated research. And sometimes we have the problem where the same patient qualifies for two different studies. And investigators are both interested in enrolling that patient or family. And how do you decide how to approach that person? Who approaches the person? Whether they are, the family learns about all the studies or one after the others. There's a lot of ethical issues that have come up just because of the research that we do. And then we were also involved in a study, another multi-site study, looking at management of patients who have had CPR and families needed to be consented within six hours. So this brought up issues around obtaining emergency consent. What are the challenges of obtaining consent in a highly stressful, emotionally charged situation? So when I started doing this, it was about once a month, and I did kind of all of them, which is really boring because that's the same person. I've been fortunate over the last couple of years to have a couple of colleagues join me, but I still think that it's really important to bring in other perspectives. So one of the things that we've done over the last few years is bring in other speakers to give us their view on things. So we've had nurse, PICU bedside nurses come and present. They talked about a patient who we were doing a compassionate extubation on and what it's like from their perspective to provide the sedation for that patient. They talked about caring for a brain dead child for long extended periods of time and what the issues are for them. And then we brought in some parents. We had a father of a child with spinal muscular atrophy who came in and helped us think about decision making and some of the challenges that he experienced with his child and for other children with chronic medical, complicated medical conditions. So then there's the PE back approach. So one of the challenges is if you plan these sessions based on cases that are happening in the ICU, there's not always the case that's gonna fit what you want, when you want. So that can be a little bit of a challenge. But there's oftentimes things happening in outside the world that we've piggybacked on. So it's sort of not to reinvent the wheel and keep people current and relevant. As an example, the Society of Critical Care Medicine put out a webinar around palliative sedation. It was an interview with discussions provided us an opportunity to think about the ethical challenges in this area and talk about things like the doctrine of double effect. And then when the policy statement about requests for potentially inappropriate treatments in ICU came out, that was another opportunity for us to think about how others feel what the thoughts are in this area and help keep everyone relevant and timely. Some of the things that we've done have been a little bit more didactic in nature. One of the people who's joined in the last couple of years, Erin Paquette is a lawyer, so she gives a talk, usually once a year or once every other year, around legal issues in Illinois, things that we as ICU doctors need to know, things like protective custody and TALA, Compassionate Use of Therapeutics. Someone's given a talk on health disparities in justice. And then again, trying to help keep this relevant to everyone, touching on topics that are really timely. So when the country was dealing with issues around Ebola and how to manage Ebola, we were a site for people with suspected Ebola. And that brought on a number of challenges, including who takes care of those patients, what we do if they were to arrest and how all that happens. So a lot of issues around professional obligation. The social media has become an interesting challenge for a lot of us in medicine. And so gave us an opportunity to talk about personal and professional boundaries and HIPAA. And then we usually, once a year or every other year, do sort of stories in the media session where we talk about what everybody else is talking about, and here the Jaha'i McMath case is an example of one of the things that we would bring up. So then the last thing is what I call Read, Listen, Write, Sit. Usually once a year we do, I usually call it a narrative ethics, and the idea is to kind of focus a little bit more on the human side of things. I think I have to thank John Lantos for this because I think this was really sort of embedded in my head when I did the fellowship here. And I usually do this in February or March because it's cold, it's dark, people are really tired in the PICU, it's been a long winter season, and I feel like they need an opportunity to not think about terms, and but to just think about where the humanity lies in the work that we do. So to give you an idea of the kinds of things that we've done, I've had people read this piece that was published in New York or a few years ago called The Aquarium. This was written by a father of a child who at around seven or eight months of age developed a brain tumor and talks about his experience from the diagnosis to the death of his child. He describes this experience as sort of living in an aquarium and sort of realizing there's a world out there. It turns out this father's daughter was taken care of at Children's Memorial, so it really is very poignant for us. But not all the pieces obviously are that close to home. The JAMA, a piece of my mind is a great resource for this kind of work. One of the things that we've read is this piece called The Panda Story, which focuses on how we as healthcare providers have touched the people that we care for in a meaningful way, sometimes in ways that we don't always appreciate at the time. And then another one, the view from Fiesole. Are there Italians in here? I was with an Italian last night to Fiesole. I think is how you pronounce that. Fiesole is a small town right near Florence that I've never been to, but maybe someday I'll be fortunate to that supposedly has this incredibly beautiful picturesque view, amazing. It's so many people who go to Italy, go to Florence and never see Fiesole. And the idea is that this piece talks about is that as we go through our lives in healthcare and we sort of touch on the surface that in sort of with all the challenges happening with healthcare, time constraints, financial constraints, we're losing a lot of the soul of what we do in medicine. But if we take the time to dig a little bit deeper, there's a lot more to be seen, a lot more substance that can help guide what we do and sort of help nurture that soul. So I was going to take one or two more minutes to give you all an example of that because this is gonna be a long day and people are gonna be sitting. So I thought maybe a little bit of a change of pace even though we're at the beginning. So I'm gonna read to you all this book called Lulu's Rose Colored Glasses, which as you can see has a little bit of rose colored glasses. I would show you the pictures, but I don't think that's gonna work well. So here we go. Lulu's in the back, that's me in the front. We're driving to Chrome Set's house when I said with a grunt. What a horrible rotten gray day. The sky is gray, the trees are gray, the road is gray, even the leaves are gray. Oh, I guess we're out of luck for the day. Come to think of it Lulu, I feel gray. I really don't like to feel this way. Lulu wasn't listening to me when she said, oh mama, look what I found. It's my rose colored glasses. They're rosy and round. Oh mama, try them on and see. Please try them on and see what I can see. Lulu, please, I'm trying to drive. I really need to have quiet for heaven's sakes alive. Oh mama, oh mama, would you please try them on? I looked at her face and she had a little grin. Didn't she know the mood I was in? Lulu, listen, we're almost home. Would you please be quiet and leave me alone? I looked at her sweet face and then gone was her wonderful magical grin. Okay, Lulu, I'll try them on. I said rather sad, wondering why in the world I had gotten so mad. So on went the darn glasses, so rosy on my face. And in spite of myself, the world seemed a more beautiful place. Gone was the gray that made me so glum. Everything was pink and rosy and plum. Oh Lulu, the sky is rosy and the trees are rosy. The road is rosy, even the leaves are rosy. Lulu, everything is so beautiful and rosy. Well, I guess we're not out of luck for the day. Boy, do I love to feel this way. Oh Lulu, thank you for making me see what you see. I'm so glad to have you here with me. You brighten my days when the world seems gray. You show me the world in a brand new way. By the way, Lulu, can I have your rose colored glasses? No mama, you need to find your own. And that's just what I did. I feel like it's important to remember that everybody sees things from a different vantage point. And that's sort of, I think one of the points of that story. So with that, I will stop. Thank you. Quick question for you, in terms of logistics of teaching us, a lot of medical education these days requires documentation and milestones and all sorts of administrative hassle. How do you fit this into that? Yeah, I've been fortunate not to have to deal with that. So you just avoid it. To be quite honest, although I mean, I think that's manageable, we could certainly do that. The way the curriculum and the PICU is set up, where I work, they have an established curriculum and ethics fits into that. It's part of the WAMC, whatever, requirements and stuff. So there's a strong support for it. And nobody has yet made me come up with milestones, et cetera, et cetera. So I guess I've dodged that bullet.