Chapters Transcript Video A Case for Storytelling in Healthcare Matthew Lewis, Ph.D., presents at the Johns Hopkins Department of PM&R’s Grand Rounds in June, 2021. it's great to be here on behalf of Primary Care Progress organization. I'll talk a little bit about where I am a senior strategic consultant to get this sort of upfront business out of the way. There is no financial affiliation with Primary Care Progress or myself. That would be a conflict of interest for this material. Uh This material is sort of just for the education and um skill acquisition of us in the healthcare field. So okay, the objectives were sent already. I want to kind of weave together a little bit of the theoretical of the importance and possible possibilities and power of narrative and storytelling and the healthcare ecosystem. Um And also how working inside intentional storytelling work is actually a teeming behavior. It's a leadership skill for working on teams and when it comes to engaging patients it creates hope, bidirectional hope both for ourselves and in our patient care. So those are the three things I hope you step away having some consideration around and some interest in thinking about and pursuing more so in terms of background. Um what brings me to my consulting work in health care is the time I spent in academia most recently. As noted, I I was a cultural psychologist by training at Emory University. My dissertation was dissertation titled what we talked about when we talk about war, an ethnographic study of storytelling and the work of words. And what I did in practical terms is I spent three years doing life narrative interviews of veterans coming back from war and trying to understand their experience in Iraq and Afghanistan. And then I spent a year out in the field being an ethnographer, um participant observation in upstate new york of a writing group for veterans and their family members to kind of write the story about what war meant and what war was some of my primary research questions is how do we kind of, individually and collectively make meaning and make sense of overwhelming experiences of experiences that live outside of our every day? Right. And that's a question, both on an individual level and on a cultural level. Right? We Walk through airports and we hear, thank you for your service and we see on social media posts the idea of, you know, 22 suicides a day and the social media response to that. That is what I would sort of lightly term a cultural meta narrative that is in relationship to someone's individual experience. And in my research I was trying to tease out what that relationship was, both the positive aspects and some of the tensions Before that, I was at the Harvard Divinity School. Um I studied with a professor at the Kennedy School of Government. I split my time dr marshall Ganz and I thought deeply about um storytelling and narrative engagement as a principle for change making right. Dr Ganz is trained as an organizer with dr king and cesar Chavez and has a long history of thinking about how do you enfranchise communities to make change from the inside Out. My B A. Was from Georgetown University, where I studied the health humanities, and it may seem a little strange that I would eventually end in health care, but it was towards the end of my dissertation that colleagues like those of Primary care Progress said, you know, listen matt, you've been studying all this stuff deeply in terms of thinking about war, but healthcare is one colleague stated it is going through a death of 1000 paper cuts with some of the burnout and some of the ways that the system really isn't working for those who are involved in it, both on the patient's side and the clinician side. And this is before covid. So I sort of got dragged into this healthcare consulting have been really happy the work I've been doing within it in the last two years, so been a bit of background about me and I also want to highlight the background of how primary care progress decided a decade ago at its formation and infancy that narrative would be a part of the leadership programming that it would do so to start. It wanted to take best practices from the advocacy and organizing way in terms of thinking about change making and that included narrative. It also wanted to think deeply and closely about teaming and creating environments of interdependence, right? Teams that are truly interdependent are the teams that are higher functioning and that's going to always include, as we see in the literature so much these days. The question of trust and psychological safety. So ultimately what primary care progress was dedicated to was more a question of team culture than necessarily team structure. Um and I've highlighted two articles here by a researcher who talks about if you're missing that culture piece and you want to do say, Equality improvement project in terms of team structure or shift a protocol, you oftentimes don't successfully come up with that change unless the culture exists. So the question was always there's gonna be a really strong emphasis in the leadership tools that primary care progress engages in in the healthcare landscape around culture, right? And part of that was going to be stories, both inviting and listening to stories, be those, the stories on our team or the stories from patient and sharing our own. And there is strong evidence based support around the power of narrative work. And I'm just gonna lift up three examples um, Steven Pinker and his big book, big in terms of a lot of information and big in terms of a lot of pages um, in his how the mind works. It would be interesting to go back if you wanted and look at Chapter eight and he talks about how narrative is actually how we learned wisdom, not just information. So things like our values. How do we establish and signal our values to our team and also remember our values for ourselves is largely a question of narrative. I'm also aware of a researcher who's at the university of texas James Pennebaker, who has many, many articles. I've highlighted one here about the health benefits of stories quite literally our physical health, but also within our communities. When we engage in storytelling work, our communities feel more connected to each other, right? And I don't mean I actually mean feel in a very specific way. So that's kind of feel not in the abstract as in I'm part of this team but feel in the specific as in this team sees me and I see them very important for the flourishing of communities and narrative is a huge piece of that. Finally, there's been a number of studies around damaged amygdala and decision making. You can find this example and others at the NIH. Um and really there is a link between choice, fullness agency and the emotional processing in the brain, right? It's not the only way that we make choice, but it is very much tied end how we make choice. So if we know that to activate emotions is to activate agency. The question really becomes what is the quickest bridge into that emotional center? And it turns out storytelling is a very clean seamless way to activate an emotional connection. So it's really how we learn values and wisdom. It's it's important for the health of individuals and the health of communities and on top of it, it's tied into choice. So there's a background on how primary care progress, wanted to establish itself organizationally, there is strong evidence based support that narrative should be part of that in creating those cultures. And then the last year, right? Um and I use this black slide to be a little jarring because I think over the last year plus global pandemic, the isolation and polarization and ways in which we've had to ask new questions about who we are as a community, on a national level, questions of social equity, um racial equity. It took our known world and it really was like a snow globe that turned upside down and on the back end of what we have come through and are still going through. It really forces us to ask the question, do our old frameworks are old lenses, does it still hold, does it still matter when the world has turned upside down? And I'm actually going to put forth that our stories are powerful in this moment and matter now more than ever. And I'm going to offer three reasons why that is. And then I'm going to take us a little bit deeper going into some of my learnings from my seven years in the dissertation. So first, um our stories very much connect us to our own resilience. I'm gonna paraphrase here victor frankel and his, you know, to make book man's search for meaning and you know, to paraphrase basically if we have a why if we are connected to our why we can survive almost. Uh and cultural psychology, we would call that the resilience bubble when you feel your why when you feel your mission, you are more resilient, right? And in telling our story that bubbling up happens stories are also intimately connected into the nerve center of recovery. Um I'm aware of standing on the shoulders of the great work of the academic Judith Judith Herman, the psychiatrist who writes a lot about trauma and recovery and and talks about telling the story is the best first step towards the restoration, right? The restoration of self, the restoration of community and to rebuild for us to decide what are the best learnings, What are we taking away from this moment of overwhelming from this moment of tumult that we just went through. We're going to have to continue to tell the story of what we saw, how it felt and what it means to us. Right? So doing the storytelling work now matters more than ever because it will help us be resilient. It will help in our recovery, it will help us rebuild. But I want to go one layer deeper into some of the trauma theory that I talked about in my own research and it begins with the idea that that healing and I mean healing for ourselves for our teams and sort of patients healing takes place over time, right? In the immediacy of an experience like working an 18 hour day, right? When the pandemic starts and then a 20 hour day after that. And then being worried about PPE and then going to the next day after that and suddenly you blink and it's been a year when you are in the rawness of the experience, it is all data, you have not made meaning of what you've been through, you have not sort of coherently integrated that experience. And initially when you get through the data phase, what we know and the research supports this is processing has to happen within the group that can hear your story and you trust here's you well in group processing we call it, right? So we have to say in the eyes and the ears of the whole, we have to tell the story of what we just went through and only then can there be community meaning making, right? Only then when we come out on the other side does it begin to make sense? Okay, that's what that was all about. And here's where we're gonna go next. Here's how we're going to lean into this now. Ubiquitous term, the new normal. So along the way of temporal reality, right from data, all the way through to meaning made and meaning making processes within a community. We need to be doing narrative work and I mentioned Judith herman earlier, you know, and this is a quote from page one of kind of her biggest book, trauma and recovery remembering and telling the truth about terrible events are prerequisites both for the restoration of social order and the healing of the individual. Right? Also, when we are doing that sort of chronological step of moving through a big experience and telling the story of it, we can sometimes trip up around language and categorizing and categorization definitions that can be productive and definitions that aren't so productive. So, I'll just give you some examples from my own personal research. Um I write a lot about moral injury. You've probably heard moral injury be adopted more into health care. Sometimes you hear it as moral distress, moral injury. Kind of came out of a little bit of pushback in the field around PTSD specifically around this idea that now that I'm diagnosed with post traumatic stress, I've been categorized. I've been kind of overlaid with an identity which is different than saying post traumatic stress or post traumatic injury or moral injury, which denotes a whole separate category of where that injury comes from. Right? So, our language holds specific pre figuring elements that impact our story. And we have to be careful with language. And one of the ways we can be careful with language is by doing story, work sharing our own story and listening to the stories of others. Because when we are in the specificity of someone's narrative life, when we are in that life world, the problematic nature of being categorized disappears because we are in someone's felt individual life world, right? Also you might want to think about how this can kind of transpire more on a cultural level and it may seem tangential to where you all are professionally, but I'm aware and thoughtful of the lessons learned from the truth and reconciliation commission after apartheid in South africa and the idea of norm ng the language of survivor or victim right? If a culture picks a certain sort of language definition, it becomes a norm and that norm has certain impact on the individual one way around it, the sharing of stories, right? One way to sort of jettison the possibility of that being a negative negative definition is to think about our individual story work. Finally, even trauma and traumatic. At the start of my research, I realized that I couldn't enter into the space of the veteran community, especially with the kind of outsider status as someone who hasn't served and immediately offer up the language of something being trauma definition final stop or something being traumatic, there might be a way in which it's yes and or know something else. And I had to hear that by engaging in story work, you know, a quote that kind of sums this up well and this is the public intellectual um Hannah rent, you know, she she talked about the storytelling does this really sort of um profound act of giving us meaning without giving it negative definition, right? We reconcile our real world are felt world through storytelling work. So I sort of think that the evidence they support was there before the practices were there before. Now more than ever this matters. But I I don't want to ever get too far away from ah the the awe, the very humane and human way that we enter the world and we're storytellers, it is a natural muscle That we stretch. Right? Um there was a recent discovery of a cave 40,000 years old discovered in Indonesia. Researchers from Australia come into this cave where they think it might have been one of the earliest dwellings for you know, man and woman coming out of the ocean and what do they see on the walls? But just this discursive storytelling work right immediately upon becoming sentient. We are storytellers. And if you want me to fast forward a bit through history and give like um a more updated anecdote or vignette, you know, I'm thinking about when the Apollo Eight mission went around the moon. Here are astronauts, right? These are not poets, These are not trained out of comp lit or getting an M. F. A. In in fiction. These are astronauts And they come around the moon with 500 million people looking up into the stars and the first thing that they did was they read from the Bible, right? They told a story of one of the greatest creation stories that we have as a culture. So in these, in these moments where we just try to give the kind of authentic information of who we are and why we care about what we care about. We signal that out into the world by being storytellers. So if I've built my case brick by brick and kind of proved my case brick by brick, um, it seems only fair that I, I at least take it one deeper and actually do a little story sharing myself around how I found my work. Um, not, not what my work is per se on a CV, but how I found my work. So, uh, this is me a lot younger, less, less gray in my beard at that point. Um, I was at the hole in the wall gang camp in my mid twenties was where I worked, it's a summer camp for chronically and terminally ill Children in Eastern Connecticut and I hadn't actually landed there right out of the gate from undergrad. I had had the experience growing up of, of my life being a bit like a jet stream that I was caught in. Um, because when you never really like fit one place or another, you, you often feel pulled along by the experience of your own unfolding. Um, My parents were divorced and my mom grew up in santa fe new Mexico. My dad was from that northeastern Kennedy like family where our summers were eerily similar to dirty dancing. So I kind of bounced between those two worlds in high school and college. Um, I was an athlete, I was a runner, but I also really love to read and write, love to reid plays, write poetry and sort of did that quietly to and from track meets in the busses right out of college. I didn't really know what I wanted to do or who I wanted to be when I grew up. Um, but I knew I love stories. So I actually worked in independent film and at a literary agency and it wasn't until I landed at this camp, the Hole in the wall gang camp to do some volunteer work that I finally felt like I found my work and I'll never forget that night. One night, one of being there, all the campers, they sing a camp song. Uh, and there's lyrics in the middle of that song. If if by chance you should be going there, please take this message that I hope you'll share. Our time is brief. There's so much to do. Don't waste a minute of what's given to you. And I was totally taken aback that here is this community of families and Children who are going through this unbelievably overwhelming experience. And here's this song, this cultural story that overlays on top of that experience and gives meaning makes it maybe a little bit more manageable now. I didn't have the language or the research to fully articulate what I was seeing that would take my work in grad school and my dissertation work. But I knew I had found my work in that moment and it really is what continues to light me up in my work today. So that's a little bit about me. And I want to point out one thing for everyone on on this call and listening is I just want to point out the two introductions that that I came to this grand rounds talk with right. So two introductions here and the first is my academic training and you know, the kind of left side of the slide and the right is who I am and what I care about. And I I am not intending that the right side of the slide is always appropriate. In fact, there are situations where it's not appropriate. But if we don't exercise some facility and some thoughtfulness around sharing our stories, we miss out on the bidirectional connection within our teams within our patients. That builds empathy, that builds compassion, that builds trust, psychological safety, all those important cultural signals that are going to help us through the times that we're going through and are going to make health care's not only more manageable, but more productive for everyone that's involved. So I'm going to leave with a few actionable recommendations before I open up the floor for any questions that can come and chat or feel free to come off mute. I'm going to offer up three recommendations that the first is find moments to share your story. I keep telling stories in the eyes and the ears of the whole within your community, within your care teams and last keep your antenna up as others engage in narrative strategies because you can learn a lot when you see how others go about this and I'll give you just a few examples of each of these two sort of clarify what I'm talking about. Soon after my PhD I had a small grant to fly around the country and watch different clinical care teams in real time engage with parents, patients do ethnographic observations in rural communities? Urban communities, Big health systems, Small health systems. And I was in Northern New Mexico talk of shadowing the medical director of a Hospice and when she would go into people's homes and when she would talk and do a team huddle. She was constantly sharing the why of her work. She was saying, yeah guys, this is why I show up every day. This is why this work is so profound and impactful. This is why it matters to me. And I asked her at the end of the day, you know I said dr trone why are you always sharing your why? And she said I don't know, it just makes me feel better. Right? That's that resilience bubble that I talked about earlier. So find moments to share your why but also find moments to invite from patients there. Why during that same ethnographic ethnographic time. I would get to stay afterwards and ask the patients, when did you feel most connected in that exchange? When did you feel the most seen and heard? And overwhelmingly the best of patients patient moments is either when they were sharing their story that was non medical or hearing a little bit of their clinician story that was non medical. Right? So in both directions, it's important to find those moments to share our story in terms of doing collective storytelling work. Dr Vivek murthy now the surgeon general of the country who was once a narrative student when I was a teaching fellow at Harvard um when he was still in clinic at Brigham and women's hospital and he was running a clinical team every friday. He would invite that team to come in and share a story of something that didn't have to do with work. Right? That was just a culture and a norm that he created again before Covid. But we can imagine how important that is after Covid. After what we've been through. Finally, um I was lucky enough to be at the table without tool go one day are sort of public intellectual surgeon writer for the new yorker. Um we were both giving talks at the patient patient safety symposium in south Carolina. And I started asking him about his sort of own practices too refine both his scholarship and his medical practice and what he said to me is he's just always on the lookout for good storytellers. And I asked him how does that kind of make you a better doc? That seems a little antithetical. And he said when he sees good storytellers often, what they're doing is they are being hyper curious about engaging with the other. And he said that's really at its core. The DNA of medicine is being very curious and leaning in on how you engage with others. For him, his antenna is always up around people doing storytelling activities because it helps him think about being sort of not only a better writer but a better doc himself. So I leave you with those recommendations. Those invitations also put up briefly so we can see it beyond what I referenced in my talk. Um there's a few places that you might want to go if you wanted to go, just kind of one layer deeper on some of the themes I've talked about today. I would definitely suggest on the left here. These are sort of very salient readings that have to do with patient care and patient engagement and where narrative fits on the right. I've offered up a few more in my kind of lane of research dan Mcadams. Um Judith Herman who have brought up before one of her articles in terms of that, the psychology and the human impact and where narrative fits in and how it sort of helps us kind of live into our own recovery live into our own identities sort of feel more ourselves. And then finally I offered up the stanford storytelling project. They've got a lot of good resources to kind of think discursive lee and broadly about how you might want to pull in other frameworks. Um that could be productive and helpful kind of right now in the here and now of your professional life. So I'll put myself on pause. I'm gonna stop sharing my screen so that I can attend to the chat and and happy to hear any reflections, insights, questions that folks might have. Hi dr lewis this is pretty rather than um I'm the vice chair for research and the department. Um I really want to thank you for your talk and you know, especially in our field we are constantly listening to stories stories about what people were like before their disability, what their recovery story has been like. And I think from my own experience when we do qualitative research and some of the research is quantitative but qualitative research sometimes brings out these stories and you know, in a quantifiable way, if you will, you know, that's what we try to do. But I have noticed time and time again how healing that process is for the patient. You know, just being asked to tell tell whoever is asking the question what happened and I mean we do that clinically. Um, so I guess my question to you is um you've men, you've mentioned how, you know, even for team building, even to deal with our own traumas, you know, sort of telling the story is important. Um I'm just curious if you have considering that part of the whole history taking process in medicine, you know, is about hearing the other person's story. Do you have any pointers of what we can do differently, do better ah in this process as you know, as clinicians, perhaps its researchers. I think your main point that storytelling is at the core of understanding individuals and understanding of a situation is it's really out well taken. Yeah, it's it's a great question and a few things come to mind. Um you know, I personally, as part of primary care progress, I've actually been collaborating with ken johnson and we've we've done a workshop to dedicate time and do some storytelling work and we're hoping to do more workshops. So of course there's there's this sort of setting aside time and I know we all have a scarcity of time to do to do this and be intentional and actually practice some skill acquisition. Right. Um how do we ever learn to ride a bike? We ride a bike and we fall over, you know, no one's ever figured out how to ride a bike by reading a book. So there is some sort of practical praxis to just trying and setting time aside to try. But I also will just give you kind of two things that have come up in my own work, both as an ethnographer and a researcher. I remember talking to someone who taught leadership at M. I. T. I believe in the business space and offered up for me. I want you to ask why? Five times. Just keep asking why And when you think that you've gotten to the layer that is someone's values know that you're like three or four steps away. And that those three or four steps get at the deeper story and the more you get to the deeper story, the more let's say a patient is going to feel heard responded to and that healing that you talked about is going to start taking place. Right. So I really tried to hold myself to have I asked why enough? Have I asked even just one more why question if it's a 15 minute patient visit, can I just, can I get in one more? Why? Right. The other the thing that I've I've offered up when I've done some work um in the V. A. Space and then also trying to do some training about the I don't love this language but the civilian military divide. I've I've offered to people that it can be very tricky to say thank you for your service that can be received in a very particular way from people that I know who have served but try out, thank you for your service semi colon. I'm interested to know what branch of the military were you in And just that simple addition opens people's minds to. Am I inviting the story in a way that immediately shuts down more? Or am I inviting the story in a way that is an applied ellipsis that says this is my best way of starting the conversation, however that lands with you and I do that in earnest and with best intentions and I'd like to know more. And so I think people pick up on that signal of oh they do actually want to know more. This isn't just a one way that I can close the conversation and then move on to my next engagement. Does that help and answer your questions? Yeah, thank you. That that is very helpful. I think there's a comment in the chat from Jack? Oh yeah, yeah. Um absolutely, yeah, I think spending the time to to sort of really listen here each other um being available to that, not not just living in kind of the information overload of say social media is important. Yeah, so thank you dr Lewis steve Wagner, thank you for your for your presentation um and appreciate your interest in listening to patients and hearing their narrative and I agree with you. I think there are two issues here. One is having, you know what you talk about is a real interest in those stories, right? And wanting to see that, I want to see this whole person, not just the symptom or this disease. Um, I think the other thing is, you're right, is developing the skills to do that, right? And you know, having a little, if you will, for lack of a better word, um set of questions that you ask on a routine basis to help elicit those those stories from our patients. And many of us I think are fearful of, you know, asking questions that may have listened to story for fear of the patient will go on and on and on and on. And of course there are some patients who are big talkers, but we have a colleague here at Hopkins name is Debra rotor in the School of Public Health has done many, many, many studies of patient and provider interactions And what she will tell you is if you ask the patient and open ended questions, the average length of time a patient will talk is about 45 seconds. Now there are patients of course who are disinhibited and have um who go on, but we should not be afraid of asking the question to elicit the story for fear that too much time will be taken up because the vast majority of time, that will not be the case, you know, but I think you point out very clearly to us having a passion for wanting to hear that story Is a useful one, right? Mhm. You know, um and your quote by Dr Herman about the need that people are gonna heal from trauma, that they had to be able to tell that story and hear that story. And it may take multiple times. Often suggest tells us why rehab total rehabilitation takes longer than the amount of time that the medical rehabilitate, that, that the immediate acute medical rehabilitation takes, right? Because people have to tell that story many, many, many times before, maybe told fully and completely. Um and often uh the the the time needed to be in the hospital is shorter than the time needed to tell the story. We have to think about this is a longer process. Right? So, I appreciate your comments today. Thank you. Thank you. and one thing it Hearing the comment, one thing it reminded me of is just, you know, I'm putting a little emphasis that that the process, the kind of distillation of, of sharing the story takes time and takes repetition. I want to underscore that usually the starting place is always with that in group. Right? So, I connected with Duke recently around a symposium they did around brain aneurysms and just being there to kind of witness people who have been through that very unique experience. There was a lot of ways that you could see the story opening up within that in group that probably doesn't always feel safe in other spaces and other places. So um I would urge you to think about your team here at Hopkins, your care team. The people that are your colleagues, that's your in group. And how are the ways that you can continue to invite and share within that in group? And then also what are the ways that you can direct patients to whatever in group feels trusting and the best first step to begin to open up. It might not always be that it's us and that's ok. It might not be that we are the person to occupy that space when it's just beginning. Um And that can take a little bit of um additional stress off our shoulders to remember that. Well, if nobody has any more questions um I just want to thank you again doctor list for sharing your experiences and your expertise with us today. Um And I'm sure you'll be willing to accept emails or other correspondence if something should come up after this point. But otherwise everyone you get a few minutes back to uh get some lunch or relax and um everybody thank you so much. Have a great day. Thank you. Bye. Thank you. Thank you. Thank you. Hi matt, my name's Leanne Sprinkle. I'm a nurse that works for the Q. I. Team at Hopkins and rehab is one of my areas that I cover. Um I've attended a few patient and family advisory conferences and they're excellent and that's where I learned before I was a Q I I was a case manager and then a pick you nurse. Oh and Hopkins. And that's where I learned about the power of storytelling and it's just amazing to hear from people who are patients um and families and you really make a connection once you learn that and I'll never forget when I was a brand new mother and a nurse and I was taking care of a woman child who had a accident and broke their pelvis and was in a body cast. And you know, this little five year old couldn't understand whether any of the cast and I was just being very patient and loving and listening to the mom and her frustrations and the and the child. And she just looked up to me and she said, I bet you're a great mom. That was like the best comments you could've ever given me. I felt great about being a nurse. But to show that she felt that I was a good mom to her child when she felt like she didn't know the skill to be how to be a mom in this kind of a situation was amazing. And I learned that from listening to these patient advisory councils in this conference, I went to one time where they just, all they do is tell stories. So I appreciate this talk today. If you don't mind sharing that one song that you shared the title of that song, I would love to reflect back on that song if you remember what it was or Yeah, Rewrite the quote for us in either an email to Jack or Yeah, I'll pass it along with exactly the the camp song is called Stars in the Sky and it was a non profit um that I probably mentioned, founded by Paul Newman. So of course with paul Newman Star wattage, it was composed by like a famous broadway composer. It's it's a wonderful camp song, but I'll share it with Jack. Yeah, because I'm very active in my church's youth ministry programs and I work a lot with middle schoolers and I really appreciate what you have said because a lot of them go through a lot of trauma when they're in middle school. Yeah. You know, with things. So anyway, that's just another side note. Thank you very much. I really appreciated your talk. It was great. Thank you. Yeah, thank you for sharing and have a great rest of your day. Created by
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