Stories We Tell Each Other to Heal: Ricky Leiter, Alexis Drutchas, & Emily Silverman

Eric 00:01

Welcome to the GeriPal Podcast. I forgot what I say next, Alex.

Alex 00:06

Introduce your name.

Eric 00:07

My name is Eric Widera. I’m a little bit nervous. I’m sharing a story with you.

Alex 00:12

I’m Alex Smith, and usually you ask me who we have with us today. But we’re going to do it a little different today.

Eric 00:18

Throwing us off. I am off.

Alex 00:23

All right, first, we’re welcoming back Ricky Leiter, who’s a palliative care doc at Dana Farber Cancer Institute in Brigham Women’s Hospital and Harvard Medical School and is co-founder of the Palliative Story Exchange. Ricky, welcome back to the GeriPal Podcast.

Ricky 00:38

Great to be back. Thanks for having me.

Alex 00:40

We’re delighted to welcome Alexis Drutchas, who is a palliative care doc at the Massachusetts General Hospital and Harvard Medical School and co founder, also of the Palliative Story Exchange. Alexis, welcome to GeriPal.

Alexis 00:53

Thanks. Excited to be here.

Alex 00:55

And we’re delighted to welcome Emily Silverman, who is assistant professor of medicine at UCSF and creator and host of the Nocturnists Live show and podcast. Emily, welcome to GeriPal.

Emily 01:06

Thanks for having me.

Eric 01:08

So I’m excited. Obviously, I’m excited. I forget what I’m actually doing in this podcast. So we’re going to be talking about story exchanges to reconnect with medicine. But before we jump into that topic, we always start off with song request. Ricky, do you have the song?

Ricky 01:22

I do. I would love to hear “Ahead by a Century” by the Tragically Hip.

Eric 01:27

Why did you pick this song, Ricky?

Ricky 01:29

Well, as someone born in Canada, I feel like obligated to pick something by the Tragically Hip, sort of the music of my childhood. It was my first concert without my parents. And actually this song was the last song they played live ever after, you know, before their lead singer, Gord Downie, unfortunately died of a gbm. So has a special resonance for, I think, a lot of people who are Tragically Hip fans.

Alex 01:54

And you’ve been requesting, I think, the Tragically Hip previously, but we got denied.

Eric 02:00

So does Alex have an anti-Canadian bias? [laughter]

Alex 02:04

What?

Ricky 02:04

I will just say the Canadian listeners of GeriPal will very much appreciate this.

Alex 02:10

I’m married to a Canadian.

Eric 02:11

Oh.

Alex 02:12

She was born in Montreal. All right, here we go.

Alex 02:51

(singing)

Eric 03:23

Thank you, Alex. All right, I’m going to start us off with one of my few questions on here because we’re going to get to exchanging stories too, is medicine is an evidence based discipline. We like data, we like science. Give me number needed treats. Give me the relative risk reduction. That’s medicine. And stories are anecdotes. It’s not science, it’s not data. What’s the value of stories in medicine? I’m going to turn to Emily to start us off on that one.

Emily 03:59

Medicine is both a science and an art. We definitely draw on the sciences, on biomedical science, on clinical trials, on pharmaceutical design and all sorts of things like that. But at the end of the day, I actually view medicine more as an applied science. So we take that science and we apply it to something that’s very messy and chaotic, like a human being or a community or a population.

So I think just as much as we focus on the science and the evidence, it’s important to think about the art of how we apply that to people and the relationships and all of the great fun stuff, the stories that unfold in the exam room alongside the science itself.

Eric 04:44

Yeah. And I gotta ask Emily, is that why you started Nocturnist? I encourage all of our listeners to listen to the Nocturnist. You’ve been doing it for a while too, right?

Emily 04:57

Yeah, it’s been about eight years. I’ve been running a medical storytelling program called the Nocturnus. And it was born when I was a medical resident at UCSF Internal Medicine. And I had always dreamed about being a doctor from the time I was a little kid and started to hit a wall, started to feel burned out, started to notice that I was spending a lot of time sitting at a computer screen and not as much time as I had hoped, sitting with my patients and getting to know them and also realizing that medicine had changed a lot in the last 10 or 20 years.

When I spoke to physicians who had been practicing back then, it seemed that the sort of modern cohort of medical students and residents and young physicians were facing a different set of challenges, a unique set of challeng challenges. And I wanted to create a place where people could come together and talk about that and to do it in the storytelling format, because stories are really fun. And I had always loved the arts and just found that storytelling was a great way not just to explore some of these feelings and emotions and challenges that were coming up for us in the profession, but also to Build community and to build a sense of cohesion and togetherness and joy in medicine.

Eric 06:21

And what did that initial story exchange look like? Was it at somebody’s house or.

Emily 06:27

Yes. So the very first show was in this Victorian house. There was a living room that you could rent. It was like kind of a co op with this common space that different groups could rent for events and meetings and things like that. So I think I spent like 90 bucks to rent the living room for an evening. And we got, I want to say, 30 or 40 different folks to come and sit in the audience. And we had six or seven different people stand up and tell stories related to a theme. And that was the very first show. It was very haphazard.

There was not a lot of preparation or coaching. It was a little bit more open mic style. And over time, it evolved into much more of a polished production where we would choose a theme, put out a call for stories, receive submissions, select the storytellers, and then put them through a really involved coaching and story shaping process. And then the theaters just kept getting bigger and bigger. And then the podcast spun out from that. So it’s kind of been off to the races since then.

Alex 07:35

Can I interject here? When I was a UCSF med student a quarter century ago, I was behind by a quarter century. I can remember two instances of storytelling in training or in education, I guess. One is Rachel Remen’s healer’s art program, where we would tell stories to each other in small groups. And another was just my friend Bimla Schwartz, who’s now chief of General medicine at Zuckerberg San Francisco General. We just have people over to share stories. And one thing that distinguishes your program, Emily, is like, the idea of the audience and the podcast and, like, putting it out there for public consumption. I wonder how you made that decision.

Emily 08:20

It’s funny, I don’t know if it even was a decision per se. I think it started off from a need, a hunger in the community. People really wanting to engage with their work and their community through this more artistic or storytelling format, since we were also fatigued from sitting in front of computers. And then as it grew, I just was viewing the entire enterprise as a love letter to health care. I feel like, you know, even before the pandemic, certainly during the pandemic, we talk a lot about the grit and the resilience of healthcare and healthcare workers and, you know, the amazing drive that they have and the amazing ability that they have to connect with people. There’s obviously a lot of flaws in the healthcare system.

As well. But I really wanted this project to be a love letter to that community. A love letter kind of back to my community. And as it turns out, the only thing better than receiving a love letter that’s specifically written for you is intercepting a love letter and sort of voyeuristically reading that love letter and getting a window into a world that isn’t yours. And so I find that a lot of the people who are outside medicine or who are maybe healthcare adjacent, really enjoy listening to the podcast and coming to the events less because they feel like the events are directly targeted toward them.

Although increasingly we are starting to bring in more patient voices, but more because there is some behind the curtain feeling of, you know, getting to step in the room and even if you only understand, you know, 85% of what’s said, because there’s a little bit of jargon, some inside talk that. That gives it some intrigue and helps people understand, like, who are these people and what is this subculture? Because we all interface with it at the end of the day as patients. So this is an opportunity for people to access it through a different form.

Eric 10:14

And you have a call out right now, right, for uncertainty. Is that a theme that you’re working on? Did I read that right on your page?

Emily 10:22

We are, we were very happy to receive a grant from the ABIM American Board of Internal Medicine to develop a podcast series on the topic of uncertainty in medicine. And actually, just before this, I got off a two hour creative production meeting where we’re just kind of like putting the episodes together and trying to figure out how to make that. So that’s been really fun.

Eric 10:44

So if listeners want to submit something, do they still have time to submit?

Emily 10:48

We’re a little late in production, but never say never. I think if you do have a burning uncertainty story, you can reach out to me at EmilySilverman@ucsf.edu and we do have some open holes and gaps in the series, so there might be a chance. So, yeah, send me your uncertainty story if you’ve got something that you think could be a good fit.

Eric 11:10

Yeah, great. And then Ricky and Alexis, I’m wondering kind of the same thing from your perspective, how did you start thinking about the palliative story exchange?

Ricky 11:23

Yeah. So rewind a few years. And I was interviewing candidates for our clinical fellowship and interviewed Alexis, who had been like family medicine doc before, done all kinds of cool things. It’s one of those applications you read and you’re like, oh, wow, like, if I had applied, I would not get in anymore. You Know, and was just so excited to meet her because she had all this stuff about narrative and writing, and that’s, like, super important to my career. So we met, hit it off instantly. Spent, I think, the whole time talking about narrative. She ended up matching with us, which was awesome.

And we were on service together one weekend, I think, sort of walking back to the office, one of those conversations, you know, attending fellow, just kind of debriefing. And Alexis said, you know, wouldn’t it be great if we could get a whole bunch of people together, someone’s backyard, open up a bottle of wine and tell stories as a way of connecting, you know, like using our shared love of writing and narrative and all this stuff? And they said, yeah, that would be amazing. We’ve got to do that. I mean, it’s Boston in the winter, so we’re going to wait until the spring to go to someone’s backyard. But that was.

That was January 2020. So, you know, a few weeks later, world totally shut down on us. I was, you know, in the ICU over at Brigham and Women’s leading a Covid sort of palliative care team. Alexis was staffing the end of life unit at Mass General. And we were kind of texting back and forth and was like, you know, remember that storytelling thing that we had talked about? We should do it, but do it on Zoom. Because we were feeling totally disconnected and isolated and scared and grieving and like, all of the things. And so we put it together. We had, you know, it was a Monday night in June of 2020. We had, I think, 40 people log on to Zoom. It was like the most people we had seen in ages, even virtual. And our call was very simple.

It was like, write about what you’re taking home with you at night, what you can’t stop thinking about. And we had these amazing stories. Like, you know, there were stories about what it was like to care for patients in the COVID ICU and dying of COVID and all of that, which were incredibly powerful. And then someone told a story, I’ll never forget it, of like, going back to the grocery store in person for the first time, and how totally bizarre it felt. So a lot of laughter, a lot of tears. And what we kept hearing from people afterwards was like, I felt so connected to everyone in a way that I haven’t felt in months. You need to keep doing this. So we did. And I think Alexis can kind of pick up the story from there, but that was kind of the sort of the birth of the palliative story. Exchange. We’re kind of a Covid baby.

Alexis 14:08

Yeah. And just to say it’s us. And Rachel Rush, who is a pediatric social. A palliative care social worker now at Colorado. So the three of us have really spearheaded this over time. And I think there’s some really beautiful parallels between your work, Emily, in terms of this idea of a love letter to clinicians. I think so much of the time, we’re trained to think of stories as patient stories and think about our impact on the stories. How are we hearing the stories? What are our biases? And I think overall, we lack the ability to truly sit with suffering together in medicine and palliative care, especially in the setting of COVID and caring for those that are dying.

There aren’t a lot of institutions, places to turn to, to share and make meaning. One of my favorite quotes that we used in our article is one by Toni Morrison where she talks about, you know, narrative creates us at the moment that we’re. That we’re creating it. And so this idea of us creating the meaning in our work, like, what is the meaning of seeing all the suffering that we do? How do we take that home? How do we. How do we make any kind of sense of that together, was a beautiful thing that we’ve noticed for palliative care clinicians interprofessionally across the board. And so how we’ve done it since is we were either invited by particular institutions, like we’ve been to UCSF or the Palliative Care Fellowship in Toronto, or much larger conferences like the Memorial Sloan Kettering World Hospice Day.

And we send a call out for storytellers. So it’s all volunteer. And rather than themes, we ask them, you know, what can’t you stop thinking about? What are you bringing home with you? What are you bringing to work with you? And really, our one rule is for it not to be a patient case. We really want it to be more inflect, more reflective. And then we have people sign up online, we create an order when we have more people than we can handle in an hour, an hour and a half. We just. We are really trying to be mindful of the breadth of experience people bring, you know, to be sure that we have chaplains telling stories, social workers, physicians, apps, et cetera.

And then we try to vary the tone of stories. We ask people sort of overall, what’s the tone? So it’s not just overall sad and horrific. We try to have some balance between things, and then we take time in between to reflect as a group, and we set up sort of some community agreements and ground rules before we begin. And we’ve been sort of surveying folks over time and have really grown in our community and are sort of starting pilot sites across the country to start instituting sort of palliative story exchanges at different healthcare institutions, different divisions of palliative care.

Eric 16:51

So I got a question. So it sounds like, Emily, am I correct right now, the nocturnists, you also not only ask for those stories, but you help kind of like a TED Talk a little bit, refine those stories over time. Is that right? Help build that story or more like the moth does. Edit the story of the moth.

Alex 17:10

Yeah.

Emily 17:11

For our live shows, our model was to do story development with the storytellers. And the storytellers told us universally that that was really valuable for them because that Toni Morrison quote is perfect. Like, sometimes you’re not really sure why you’re telling a story or what the story is really about. And so the story development process is half, you know, creative and editing, but it’s also kind of half therapy and just figuring out, like, what is it that you’re trying to say? So we recruited some amazing story coaches to help with that.

And so for the live shows, by the time the person steps out on stage, they’ve gone through this really extensive story coaching process. But then when Covid hit, we couldn’t do the live shows anymore. So we started a different format which was much more unscripted, improvisational, spontaneous, and raw, which was our Covid audio diary series. In a similar vein to the work that the two of you are doing, we just said, send us a voice memo. Tell us who you are, where you are, and what’s going on today.

And for the first three months of the pandemic, that very first wave, we got several hundred audio diaries from clinicians across the United States and stitched those together into this sort of audio verite documentary series, which we called Stories from a Pandemic. And since then, we’ve been playing a lot more with that more raw, improvisational voice memo format. There’s pros and cons, I think, to the scripting and the massaging and the shaping and the spontaneity. And it just depends on what the moment calls for, I suppose.

Eric 18:48

Yeah. How do you think about that, Ricky?

Ricky 18:50

For exchange, we focus on the storytelling and the story listening. And so we have everyone write their story down. And we’re very explicit that we don’t want them to focus on the performance of it. It’s really about sharing the story itself. So we want them to read the story. There’s no preamble. You know, there’s really lower the activation energy because we want to be as sort of participatory as we can be because we heard that from people, they were like, oh, I’m, you know, understandably, like, nervous about sharing my story, even though these are my close colleagues.

And so we said, we’re just going to have you write it down. Like write it down and read the story. And that works really well. We have recently, for our larger events, and even not as large events, we have people send us their stories. We want to make sure. And we’ve never had this before, but there’s like nothing inappropriate there or that would be otherwise offensive or show any sort of bias because we think that could do real harm. And so we certainly don’t want to have a story that shares that. We’ve never had it. But in the process, we now sort of lightly, we don’t edit their story, but we give suggestions.

And most of the time the suggestions are the same, which, you know, are. Get more personal. You know, like, this is great. And tell us more about what you’re feeling and your reaction to this. And then it’s amazing to see the stories, like, come alive when they’re read. Like, we now know the stories that are going to be told. And even so, there is so much power in hearing the storyteller read. Read the story.

Eric 20:24

Yeah, I can imagine it’s this balance between kind of the raw feeling that’s coming out with an unedited story and a really good, polished story that just resonates with people.

Alexis 20:36

Yeah. I think either way, the powerful part that we’ve noticed is when it gets more personal. Because I think again, that we get so good at telling other people’s stories. And I think that’s where a lot of the vicarious suffering occurs and happens is it’s like we’re not seeing where we are in that or where our family is or where our colleagues are. And I think we’re asking people to turn inward in a way that their training has never asked. And so it is interesting to think that the last few times we’ve given feedback, each time it’s like, where are you in this story? And can you bring that out?

Eric 21:11

We can take this time to share stories. And I’m actually going to be the guinea pig, because I’d love to hear how you would approach this. Like, what does that style look like? So I’m going to start off with a pallavic story exchange style. I Actually wrote my story down. I’m not going to tell you what it is. Right. I don’t tell you what it is before.

Ricky 21:32

No preamble. No preamble, preamble.

Eric 21:34

Just jump into it. And I’d love to hear kind of what you do after that. So here’s my story. Alex came to my office excited to share the news that we would be all sharing a short story for this podcast. I was hesitant I put it off. I’m not sure why the stories are all there, but I guess it feels overwhelming to pick. Almost like describing a drop of water while standing in front of a raging waterfall. Should I share a story about the hospice patient whose cancer miraculously went away, but that meant we would have to send him back to his unsafe living environment where all of his other health issues would blossom?

Maybe the alternative of the patient whose family hopes for a miracle in the face of certain death, for only that death to occur as anticipated by all. Or maybe the guilt I feel over not stopping a procedure that ended in a technical success but failed to achieve a patient’s goals. The more I think about the stories, the more they become like a drop of water in a waterfall, becoming indistinguishable for one another. I feel like a bad palliative care doctor for not keeping the stories distinct. I’m overwhelmed. I tell Alex I don’t have a story to share. What are you doing, Ricky? I see some handling.

Ricky 22:49

We encourage people and I think on zoom, it’s so important, right? Even in person too, you want feedback as the storytel and it can be so affirming to them. So we encourage people like claps, snaps, jazz hands, like use the zoom. All the features, the floating.

Eric 23:05

The interesting with zoom is I didn’t hear the snapping because I think zoom, actually.

Ricky 23:10

Yeah, but you can see it.

Eric 23:14

I don’t have my glasses on, so I just move it.

Ricky 23:17

So we encourage people to use the chat and I think what we would do there, I mean, you know, Eric would. I love that story. And I think it really spoke to me and I think it speaks to that feeling that I have. And I imagine others do too. When we’re starting these story exchanges be like, what am I going to write about and what’s the story going to be? And there is that sort of sense of, on the one hand, I have all these stories to share, but where do I start and where do the details, they all blend together.

And yet all of those examples you shared are ones that I think I feel viscerally as a palliative care. You know, inpatient palliative care, Doc. Like, I’ve had all of those experiences, and they’ve all sat with me, and so I loved how you. You mentioned them all. And then the idea of the drop and the waterfall was just perfect. And I’m wondering, like, the rest of the group, like, what were. What were your reactions to Eric’s story?

Eric 24:10

And just pause right there. Ricky. Is this what you’re doing during the story exchange?

Ricky 24:14

Exactly. Exactly.

Eric 24:15

All right. Unpause. Keep on going.

Ricky 24:18

Yeah.

Alexis 24:19

And just to point out, like, we always model one of us as facilitators, what feedback could look like. I think when Alex came to ours in Montreal, you said something like that we show each other positive regard always. And that’s really what it’s about. We’re not critiquing each other’s stories. We’re not saying if it was good or bad. It’s really about what resonates, what’s universal here.

Eric 24:41

And so that was my medical training is about telling me, is this a good or bad? And how can I improve?

Alex 24:46

Yeah, I was going to share my feedback, which is, I think you failed the palliative story exchange. It’s supposed to be about one patient story.

Eric 24:57

That’s what I need. I feel better now.

Alex 25:01

I get kicked off the zoom.

Eric 25:03

God, I needed that zeta maskism that medicine teaches us.

Alex 25:08

I can.

Eric 25:09

I can sleep tonight.

Alexis 25:15

Shut down now I’m better.

Eric 25:19

The world is back to normal. There you go.

Alexis 25:21

Yeah. I did really feel when you said something like, I feel like a bad palliative care doctor to not keep them distinct. I feel like that after a week, I was just on service last week, and by the end of the week, thinking, you know, did I have an impact? Who. Who did I care for? Did their life, you know, in not remembering the details, it feels like somehow we’re saying that they didn’t matter, when in fact, they do matter, and they have mattered. And I. That really resonates with me that.

Eric 25:50

That line that you said, Wonderful. I’m gonna pause real quick. Emily, for nocturnists, is there anything that happens after the story like this?

Emily 26:00

Well, sometimes we go out and have drinks and food, so that happens.

Eric 26:07

So there’s like a verbal clap sharing. That’s the feedback, but there’s no, like, exchange of thoughts, like, what’s happening here and what I got from Alex. Bad Eric.

Emily 26:20

Yeah. At our live shows, there’s a backstage. And so we do nerdy theater exercises backstage to warm up our energy. We do Icebreakers. We get to know each Other, I think the. A cohort of storytellers who are performing that night build their own little mini community as storytellers. And I’ve seen, you know, people walk off stage after telling their story, like into the arms of another storyteller, and people telling each other how proud they are.

And so I think there’s definitely a feeling of warmth and receptivity and support backstage from the cohort of storytellers, obviously from the audience, any family and friends who attended the show, colleagues, people, you know, often will have people approach them, them to offer reflections about the story. And then for many of the stories, we sit down weeks, even months after the story is performed to unpack the story further through a conversation. And so one of the formats of the nocturnist is you hear the 10 or 15 minute raw story clip from the stage up top, and then there’s a music break. And then we sit down and we kind of meta talk about the story and kind of just let the conversation be organic and go where it goes. So it’s kind of like the primary source and then the commentary. And so that’s been a really fun format.

Eric 27:42

That’s awesome. And then I think what’s so cool.

Alexis 27:44

Here is the overlap and the distinctness, you know, that there’s like this universal overlap of community building and vulnerability, and there’s a distinctness in terms of the format. And I just love that. I love that because it doesn’t mean that one is for one. Just the variety allows people in medicine to connect with the impact of their work in their life and vice versa. And there’s something really beautiful about that.

Eric 28:10

And then, Ricky, how would you transition to the next story?

Ricky 28:13

Yeah. So we would give time for reflection. Oftentimes the reflection naturally decrescendos. And then we’ll say, and now I’m going to pass it on to Alexis, who will introduce our next storyteller.

Alex 28:27

Yeah, which is we’re going to do now we’re going to pass it on to Alexis, who is our next storyteller.

Alexis 28:33

Introduce myself. All right. It was the kind of day that almost seemed made up. A clear cerulean blue with an angle of light that bounced off the gold State House dome. The contrast between this view and the drab hospital walls as I walked into my patient’s room was jarring. I’ll call my patient. Suresh. His lymphoma had relapsed, and palliative care was consulted to help with his symptoms. But despite the havoc cancer was causing, he had a warm, peaceful quality about him. He sat in his recliner by the window.

After learning about his pain, I asked how he spent his days. His face immediately lit up. Suresh was a barge captain, a dangerous and thrilling profession that led him to transport goods across international waters. His eyes glistened as he described the joy he felt at sea. Mornings alone on the bow, feeling the salted breeze, calm nights on the deck, looking at the stars through the stunning darkness. The freedom he exuded was palpable. Having spent years of my childhood living in Japan and Hong Kong, my family’s entire home had crossed the Atlantic on cargo ships four times. Maybe Suresh had captain one.

Every winter we hosted US Navy sailors who docked in Hong Kong for the holidays. I remember sharing stories of our adventures, who saw or ate what and where. I loved these times, the freedom of being somewhere new, the way our identities shift and expand as we grow and experience. When Suresh shared his stories of the ocean, I was back there, too. My mind returned to the stark hospital room, his temples sunk and his muscles in his legs narrowed as the cancer took over. Still, I could so easily conjure him as the robust man standing on the ship’s bow.

The realization of all he’d lost. It hit me not just in the comparison of who he was earlier and now, but in the realization that we all sit so precariously at this threshold. I know who you are now is not the person you’ve been, I said to Suresh. With that, he reached out for my hand and started to cry. We looked at each other with a new understanding. I saw him not just as a frail patient, but as the person who embodied a full life, as someone strong enough to sail across the ocean. I see now that I saw myself in him. Maybe that’s what affirming someone’s dignity entails. To truly see their personhood means that we have to see our own aliveness reflected in theirs, and vice versa.

It’s been over a year now since I took care of Cresh. A few times a year, my wife and I take our son to the harbor in South Boston to see the planes take off and the barges leave the shore filled with containers. And every single time I think of Cresh, I picture him sailing on the waves, free as he’ll ever be.

Eric 31:03

That was beautiful. Okay, I’m gonna pause real quick. And now I’d like to hear from them. Like if this was a live nocturnist podcast. So you have a little bit of musical interlude, right? And then you said maybe a little sit down to discuss. Is that right?

Emily 31:22

So thank you for sharing that story. It was beautiful. One thing I’m noticing is that the first two storytellers wrote their stories down and read them, and that’s wonderful. And it’s not the format that the nocturnist uses. So the nocturnus doesn’t script the stories word for word. People don’t read off a page. It’s. Think of it less as a literary reading and more like a theatrical performance in the form of a monologue, where the monologue is roughly outlined but not scripted word for word.

So when a storyteller steps on stage, they might have a rough sense of where the story begins, where it ends, and what are the major beats. Narrative beats, kind of like the skeleton, I guess, of the story. But then it’s not until the moment and the night of that you fill out the skeleton with all the, you know, flesh. That analogy was more morbid than I meant for it to be.

Alex 32:22

Geriatrics Palliative Care Podcast.

Emily 32:24

There we go.

Alex 32:25

Roll with it.

Emily 32:25

Yeah, you’re not afraid. You’re not afraid of a good skeleton metaphor, but you did say that there’s.

Eric 32:30

A little bit of sit down, like a conversation about the story afterwards.

Emily 32:35

Well, let me finish about improv, and then I’ll get to the sit down. So the reason that we embrace this format is because it does allow for a little bit of feeling into the moment and that embodiment and, like, really tapping into what the audience needs and wants in that moment. So I’ve had certain stories that felt really serious in the coaching sessions and then weirdly came out, like, really comedic in a way that worked. And then stories that have been the opposite that have felt like they were a bit more playful and comedic, but then on the day of actually, the way it was received and the way the energy was in the room, it came out feeling a lot more serious.

And so I think one thing we really like about not having it scripted word for word is the opportunity to kind of flex into that moment and just be present and kind of try that out. So that’s one difference. And then for the sit down, it’s not usually sit down on the stage that night in the theater at the show. It’s usually the show is the stories alone. And then weeks or months later, we’ll have a zoom conversation just like this, where I’ll sit down with the storyteller and we’ll say, you know, how was it for you to get up on stage and perform your story?

And let’s talk about the story development. Process and let’s talk about your dad or whatever the topic was of the story. And it’s a bit of a longer form. So the container of a 10 to 15 minute live story is very specific. Like you don’t want to cram a whole life memoir into a 10 to 15 minute story. Like you really want to focus more on a moment, but the conversation is more spacious and so we can get a little bit more into the person’s life story and kind of go off on tangents. So that’s the format that we use.

Eric 34:17

Fascinating.

Alex 34:18

A quick comment, because we have to move on. We still have three stories left to go. As my prep work for each podcast, I do a quick Google search of people and Alexis, I saw that you identify as a writer, self identified as a writer. And I saw that shine through in your story.

Eric 34:31

The colors.

Alex 34:32

Yeah, Cerulean blue, the choice of words, the specific words that fit, set up the story about the sea and precariousness. The exact right word at that moment. And I think it’s interesting you identify as a writer, not a storyteller, per the comments that Emily was just making. And we should move on, I think, right?

Eric 34:56

Yes. Emily’s yeah, Emily, I think you’re sharing the next story.

Emily 35:01

Sounds good. So I didn’t write mine down. So I guess this is true to my promise for improvisation, but I wanted to make my story a little bit of a love letter to palliative care. I’m an internal medicine trained physician. I’m not a palliative care physician, although I still have thought about going down that route. But anyway, this is a story about palliative care and my mom. So my parents, I’m an only child and my parents were living in Florida, in Miami, which is where I grew up.

And they were living in the house that I grew up in. And for about five years, my mom was declining from a dementia illness, we think something Parkinsonian. Maybe it was dementia with Lewy bodies, but. But not exactly sure. Some diagnostic uncertainty there. And so she was declining. And I lived in California, which was far away. So I would visit as much as I could and, you know, do my best to take care of her and advocate for her as I could. But then when Covid hit, I went a year without seeing my parents. And that was due to travel restrictions and things like that. And finally when we were able to travel again, I flew to Florida. I walked into my parents house and I came upon a scene that was really different than it had been in the past.

And I just realized that There was a lot that had happened that I had missed. So the patio outside was completely overgrown with weeds. I had never seen that before. It was, you know, normally it was completely kept clean. And my mom was in really awful shape. She was more frail than before. She wasn’t eating. She didn’t want to get up out of bed or out of a chair. And my dad and a caregiver that was helping out were really trying to push her and persuade her to get up and just transfer into a different room at least every day. And she was starting to get more and more resistant to doing that.

And then most upsetting was that she was having these pain episodes. And I still don’t really know what they were, but there were these kind of intermittent pain episodes where she had a lot of pain in her legs and it would last for like minutes. And she. There was a lot of grimacing. It was just really upsetting to see. And I turned to my dad and I said, I think mom needs palliative care. And he didn’t really know what that was. And she did have a primary care doctor. And I was trying to figure out what to do about engaging her.

Actually, what I ended up doing first was I’ll never forget sitting on the couch next to my mom. And I called up my friend who is a palliative care doctor and described the situation. And I just remember he said, I think your mom needs something long acting. She needs like some methadone or something to get ahead of the pain. And then I asked the primary care doctor about methadone and she was like, I don’t do methadone. Which I don’t blame her. So anyway, long story short, I was able to call and get a palliative care team. It was a home based pallia program. It was all covered by my mom’s insurance.

And they arrived one day. It was a multidisciplinary team. They came into the house. It was, I don’t want to say it felt like a party because obviously this was not a happy occasion, but it was just so nice to have some people and some energy in the house. It felt like there was some stagnation that had been happening in the house. There was a doctor, there was a nurse, there was a chaplain, there was a social worker and there was my dad and there was me and my husband and my mom. And I remember we were all sitting around the kitchen table and I just felt this feeling of relief, like it’s going to be okay. And they started to visit periodically.

They got on Top of her pain. And right before I left Florida, I remember sitting on the couch next to my mom, and my husband was sitting on the floor watching TV just a few feet in front of us. And my mom liked my husband, but I don’t know, there had always been some distance between her and my husband. I think she. I’m an only child and kind of felt possessive over me and just didn’t love that. I was now, like, married and growing up and starting my own life. And I had always hoped to see some more warmth from my mom to my husband. And so I’m sitting on the couch, and she’s finally having her pain under control and feeling a bit better. And she looks at my husband, and my husband turns around and says something to her, and my mom looks at his face, and she goes, oh.

And I’m like, what, mom? And she’s like, oh, oh. Like she’s having an epiphany or something. She’s like, your face, your face. And she looks at my husband’s face. She goes, your face. It’s so comforting. It’s like a bowl of soup. And my mom is not a poet. She doesn’t really speak in metaphor. But I knew exactly what she meant about a bowl of soup, because my husband does have this, like, really warm face. He’s got a beard. And then she kept going, and she was like. And not just any soup. Not like a thin, brothy, you know, chicken soup. It’s like a hearty soup, like a stew. And she just went on and on.

And I had never heard her talk like this before, like, in metaphor also. It was just a really unusual outburst of love and affection for my husband, who had been so wonderful supporting me and supporting her and kind of being there. And it was just this really beautiful moment. And I feel like that moment would not have happened if the palliative care team hadn’t gotten everything in order. So several weeks later, my mom did end up passing and did so in a state of peace. And ever since, I’ve just been eternally grateful to the palliative care team and the palliative care discipline for what they did for my mom. So thanks to everybody listening who does this great work.

Eric 40:49

Thank you. That was wonderful. Truly. On theme of the love letter for the for the Dr. Nest, I’m struck.

Alex 40:56

By the complexity of emotions that you feel at that moment, that central moment in the story when your mom says that your husband’s face is comforting like a bowl of soup. You know, it’s both that, like, love that Impending loss that, like, wishing for more, that their relationship had been better. The humor, you know, and that strikes me that that’s one of the things that makes a great story great, is the sort of richness and complexity of those flavors in that story.

Ricky 41:24

I also think, like, the unexpectedness, like, you know, I did not see it going in the direction of soup. And then when you named it Emily, it felt so right that it just. It was a beautiful way of tying this story together.

Eric 41:37

I also like hearing the differences between the kind of telling the story without the piece of paper in front of you and telling the story with the piece of paper and kind of the differences and how that story arc is forming, how it sounds to the ear. Maybe we can try the paper again. Ricky, do you have the paper? Do you have a story to tell via pal story exchange style?

Emily 41:59

Sure.

Ricky 41:59

Okay. It was late on a Friday afternoon in December 2019. Dark and cold, but blissful in our pre pandemic ignorance. We had been following a woman who was in renal failure from refractory myeloma. She wasn’t a candidate for dialysis, and she was dying. Sam, my fellow, and I took the elevator upstairs to the hospital’s top floor. Both of us were just a few hours away from our winter vacations. My mind wandered. The patient’s daughter was sitting vigil by her bedside. Sam sat down in front of her on the foot of the bed. I took my usual seat on the trash can. The daughter was filled with anticipatory grief, regret, and anger.

Sam did a beautiful job responding with empathy and complex reflections. I scribbled mostly illegible notes so that I could give her specific feedback. After we walked out, I briefly lost focus, daydreaming about my impending moments of solitude on the ski slopes. I zoned back in when the patient’s daughter told us. It had been a rough year. All of this with my mom, of course. And a friend got sick through instinct. We both did the palliative care head tilt. Mmm maneuver. And then my frog died. Frog died, I wrote, not really thinking about it. Perhaps a more experienced palliative care clinician would have leaned into it.

Tell me more or I’m hearing that your frog is really important to you. What else feels important right now? We eventually moved on to the next topic. Missing an opportunity for connection, I suppose. We talked about the dying process and what she could expect for her mother. We hugged after we left the room. Sam turned to me. Did she say her frog died? Yep. We tried to debrief, but we really couldn’t do it. I’m not particularly proud of what happened next. Like a true research fellowship trained palliative care physician. That night I scoured pubmed for data on the efficacy of support frogs. And they don’t tell this story to poke fun at our patient’s daughter. Far from it. But it was an encounter that stayed with me in the years since. I’ve started to notice more and more support frog moments.

Those moments that outside of a palliative care encounter, would seem totally outrageous. And yet when we’re in the middle of them, locked in and empathetic, they make perfect sense to us. And I think it’s okay to find the humor in our work. It’s okay, perhaps even necessary, to laugh a bit together at the occasional absurdity of what we all do as palliative care clinicians, particularly after the years we’ve all had, I think we could all use a support frog or two.

Eric 44:29

That was fabulous.

Alex 44:31

Speaking of Ricky.

Alexis 44:36

I think it’s cool to point out that like the we, we also have done some live events at conferences and such, and I think what we found. We were worried about asking people to read their story, thinking would it be boring compared to more performative experiences? But I think a lot of people’s cadence and emotion comes up whether they’re reading in person or not. You know, audience members cry like you see a lot on Zoom and it can be connective, even for those who know and work together really closely. I think we always come out learning something new or something unexpected about those that we have felt close to already or those that we don’t even know. So I think that’s a cool similarity. Even though the format is different, you still feel a lot.

Eric 45:22

Yeah. Well, I wonder, since we all had a chance to share a story, maybe Alex, instead of the song, you can end with your story.

Alex 45:31

Sure. Here we go. And I’m going to violate the precept of no preamble. I shared this story with my wife, who’s my story developer. You know, vulnerable story, my writing. I share it with her and her first comment to me is, alex, you have to stop putting two spaces after the period. Yes, wholeheartedly agree.

Eric 45:51

Apparently me and Alex cannot follow directions.

Alex 45:54

No, we’re terrible.

Eric 45:55

No preamble.

Alex 45:56

Here’s my story. It’s called pronounced. The call from the hospice nurse came at 4:30 in the afternoon. Can you come over to the unit and pronounce? Alvin Thomas, have you called the family? I asked. I was only covering the hospice unit for the day. I didn’t know any of the patients, the nurse replied. No friends, no family. Pushed everyone away. Homeless, no one to call. I walked from my office to the hospice unit in the yellow sun of a fall San Francisco day. Room two, called the nurse. I closed the door behind me.

His body lay on the hospital bed. Wispy gray hair, emaciated, scarred, quiet. I placed my stethoscope on his chest. Silence. I felt for a pulse. Absent. I shone a light in his eyes. Pupils were fixed. I squeezed a finger. Nothing. I thought of my son at daycare, how he’d squeezed him goodbye that morning. I hope Alvin Thomas had been loved. I hope he had been held by his mother, swaddled and hugged tight to her chest, rocked and sung to and loved unconditionally. I held his hand, squeezed a little. Time of death 4:45.

Alexis 47:07

You’re going to make me cry here, Alex. Seriously, that was. Yeah, yeah. I mean, how can we all not think of our own kids here and those we love?

Eric 47:17

Well, I want to thank all of you for joining on this podcast. Thank you for the stories. Thank you for the things that you’re doing so we can share these stories and hear other people’s stories too. Mockingly. I started off with the idea that medicine is about data and science, when in truth, it’s the stories that make meaning. So thank you for making so much meaning and thank you for being on this podcast.

Ricky 47:44

Thanks for having us.

Alexis 47:45

Thank you

Emily

thank you.

Eric 47:48

And thank you to all of our listeners for your continued support.

This episode is not CME eligible.