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Eric and I weren’t sure what to call this podcast  – storytelling and medicine? Narrative medicine?  We discussed it with today’s guests Heather Coats, palliative care NP-scientist, and Thor Ringler, poet.  It wasn’t until the end that the best term emerged – storycatching.  Because that really is what this is about.  Clinicians “catching” patient life stories.   

What’s in a story?  Well, as we learned, everything.  Our patients aren’t “the 76 year old with heart failure in room 202,” as Heather Coats astutely noted.  They’re people, and what makes us people if not our life’s stories?  Our loves, our triumphs, our failures, our work, our families.  

Thor Ringler helped start the My Life My Story project at the Madison VA in Wisconsin.  It’s since spread to over 70 VAs.  VA “gets” the importance of storytelling in medicine, without the need for reams of research to back it up.  As Thor notes, capturing patient stories has face validity as positively impacting the patients who share their stories and have them documented, and for the clinicians who get to truly and deeply know their patients in far greater depth than “what brought you to the hospital?” Heather Coats is hard at work establishing the evidence base for the power of capturing patient stories in healthcare settings, for those health systems that need a little more convincing.   

Wonderful work.  Enjoy!

Many links:

VA Presents: My Life, My Story: George: A Voice To Be Heard on Apple Podcasts

Every Veteran has a story. Our mission is to help them tell it.

My Life, My Story: VA’s healthcare improvements through deliberate storytelling – YouTube

Storytelling Helps Hospital Staff Discover The Person Within The Patient

A few data based publication links from Person-Centered Narrative Intervention Program of Research: 

Unpacking characteristics of spirituality through the lens of persons of colour living with serious illness: The need for nurse-based education to increase understanding of the spiritual dimension in healthcare

Integration of Person-Centered Narratives Into the Electronic Health Record: Study Protocol

Bennett, C.R., Shive, N., Coats, H. (2020). What Mattered Then, Now, and Always: Illness Narratives From Persons of Color. Journal of Hospice and Palliative Nursing, 22 (5):392-400/ PMID: 32740304.

Coats, H., Meek, P., Schilling, L., Akard, T., Doorenbos, A. (2020). Connection — The Integration of a Person-Centered Narrative Intervention into the Electronic Health Record: An implementation study. Journal of Palliative Medicine, 23 (6),

Coats, H., Crist, J., Berger, A., Sternberg, E., & Rosenfeld, A. (2015). African American elders’ serious illness experiences: Narratives of “God did,” “God will,” and “Life is better.” Qualitative Health Research. doi:10.1177/1049732315620153.  PMID: 26701962.

Narrative Methods Textbook referenced in podcast
Narrative Methods for the Human Sciences

A few Dignity Therapy- Harvey Max Chochinov links
About us – Dignity in Care

Research Team – Dignity in Care

Other links:
Curiosity by Faith Fitgerald

Eric’s blog post on Dignity Therapy from 2011



This episode of the GeriPal Podcast is sponsored by UCSF’s Division of Palliative Medicine, an amazing group doing world class palliative care.  They are looking for physician faculty to join them in the inpatient and outpatient setting.  To learn more about job opportunities, please click here:

Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: Today we are delighted to welcome Heather Coats, who’s a palliative care nurse practitioner and scientist and Director of Research at the Hospice and Palliative Nurses Association, or HPNA, an Assistant Professor at the University of Colorado and Schutz College of Nursing. Welcome to the GeriPal podcast, Heather.

Heather: Thanks Alex. Thanks for inviting me. And Eric, thanks to you both for having us today.

Alex: And we’re also delighted to welcome Thor Ringler, who is a writer and editor at the VA in Madison, Wisconsin. Thor, welcome to GeriPal podcast.

Thor: Thanks, Alex. Great to be here with you and Eric and of course Heather, who I’ve worked with for many years. So awesome.

Eric: So we’ve had an interesting topic today, storytelling and medicine, narrative medicine… We’ll talk about what we should call it, but before we do, Heather, I think you have a song request.

Heather: I do Alex, and I’m so happy to have this song request, it’s called The Eye by Brandi Carlile, which comes from a quite old 2015 album called The Firewatcher’s Daughter. So I would love to hear. And of note I would’ve used in the light of what we’re talking about today, Brandi Carlile song, The Story, but my colleague here at University of Colorado, Carey Candrian, already has done a previous podcast and that was her song of choice. So Alex and I had to find another one, and Brandi and her ballads are very near and dear to me because you can imagine that’s related to narrative and telling of people’s stories.

In addition, I think this song specifically because of my palliative care background, the chorus that talks about you can dance in a hurricane but only if you’re standing in the eye really speaks to me because so many of the persons that I care for and their families are standing in the middle of hurricanes and yet they have this presence that is still allowing them to live fully. And so I really gain that and I love the chorus words that she uses in this song.

Alex: That’s great. Thank you for this request. Here we go.

Speaker 5: It really breaks my heart to see a dear old friend go down in the war now place again. Do you know the sound of a closing door? Have you heard that sound somewhere before? I wonder if she knows you anymore. I wrapped your love around me like a chain, but I never was afraid that it would die. You can dance in a hurricane, but only if you are standing in the eye.

Eric: That was a beautiful song.

Alex: It’s a great choice. Thank you. Of course, you’re right. The story would’ve been better because that is what we’re talking about today. But yeah, great choice.

Eric: So patient narrative storytelling, independent of what we call it, I’d like to turn to both of you and just how you got interested in this as a subject. Heather, since you started off with the song request, I’ll start off with you. Why is this a research focus of you? How did you get into this?

Heather: Sure. So I think as palliative care clinicians, we use narrative as we try to understand more about the persons that we’re caring for and their families. Interesting enough, my PhD was actually Using Narrative Methods for Human Sciences, which is a textbook by Catherine Riessman, which is narrative analysis methodology. So during the dissertation, that was a method for my PhD research and that’s related to… I was learning about African American elders experiences of psych-social-spiritual healing and serious illness. So that’s a title of a publication in qualitative health research. And it was in that moment that one of my participants doing the interview broke my heart.

And I call her name Ruby because that’s the pseudonym, because I did the whole narrative interview as a method, turned off the recorder and had watched her through this 45 minute interview, start like this, hunched over, breathless. She was a heart failure patient. Been in the hospital four times, vented, been told the story to her family, she won’t live. And here she was with me today. By the time we got done, she’s bright, face is great. And when I turn off the recorder, she said to me, “Heather, why has no one ever asked me those questions before?” And my interview guide for the narrative analysis methods were, tell me about you. Tell me about your illness. Tell me how your illness has impacted your relationships with others, your healthcare team, your family, friends, your beliefs, your values, your preferences. So those questions we ask when we’re doing a palliative care consult.

And so it was from that time on that then I continued going and that’s how Thor came into my life. I went to University of Washington and a colleague there, Lucille Marchand, introduced me to Thor, who’s a palliative care physician and said, “There’s somebody doing this narrative that you did for your method as part of integrating it actually into the patient, or I call persons, electronic health record to impact that communication between the clinical healthcare team and the persons that we are caring for.”

So lo and behold, that’s how I met Thor. So it was a narrative method, turn to intervention. And now my program of research is around testing that person-centered narrative intervention or PCNI because you have to give them an acronym in healthcare.

Eric: How about you, Thor, how did you get involved in all of this. Unmute, Thor.

Thor: Yeah. So I’m a writer, I’m a poet. I come to this from two different training backgrounds. First as a MFA in poetry, which was my initial career, I guess. I thought I was going to be a professor or educator, decided I didn’t like that. Many years later, went back to school to get a master’s degree in marriage and family therapy in counseling that led me to the VA. And then this program, which was initially a pilot project, which was to interview veterans about their lives and about their stories and put them in their record, in their medical chart for their doctors and nurses to see, I was brought on for the initial pilot of that and that’s how I’ve been involved since then for the last 10 years I guess at the VA. So I love to write, I love talking to people, I love people and I love to let their voices be heard. So that’s my motivation for [inaudible 00:07:46]

Eric: Yeah. And can you tell me a little bit about… You mentioned this project, what project?

Thor: Oh, I’m sorry. Yeah, that should be the background. So I work on a project, a VA program called My Life, My Story. And it’s a project where we interview vets, some at bedside, some outpatient, and we ask them pretty simple question, what would you like your care team to know about you as a person? What’s important for you? Where do you come from? What are the experiences that have shaped you? And which of those experiences would you like to share with us that we could then write into a story that we’ll share with providers? So that’s how the program…

Eric: And I love this program, you’ve been in the New York Times, NPR, and it’s in multiple different institutions, is that right?

Thor: That’s correct, yeah. Within the VA it’s now at 70 VA hospitals. It started here at Madison at one and it’s also spread outside the VA now to hospitals in Boston, Providence and now starting up actually in California and UCLA and UCSF.

Eric: For this project, who actually does the, I guess both storytelling part, I’m guessing that’s the veteran or the patient, non Vas, who does the writing and the listening? Is it all writers and poets like you or is it different people at different sites?

Thor: It’s different people at different sites. We have some sites that’s volunteers. So we have community volunteers who often they have a background in writing or background in healthcare, certainly an interest in interviewing and an interest in writing. And then we also have another Vas, many of the interviews are done by medical students or other healthcare trainees as part of their clinical rotation at the VA. And then there’s also staff like myself and there’s researchers like Heather who I was really fortunate to meet because she applies the critical research lens to the work. I produce stories, that’s what I do. I’m a producer of content for veterans and for staff, but I’m not a researcher. So I’m super happy when Heather first came and started working with us because she has that other perspective, which is something we need as well.

Eric: And before we go into the research aspect, I’d love to know, Heather was talking about her structure with the patient. Is there a structure to my story that you use that other people use? Are there training materials?

Thor: Yeah. Heather can speak to her end of it because I know it’s a little different in the research thing. I think there’s more of, I wouldn’t say a script, but we don’t have a script, so we don’t have a set series of questions that we ask. I would say we touch on certain topics and then those are just generally childhood, growing up, entry into the military because we all always interview veterans, the military experience, returning to civilian life, work, marriage, where you are now and where you look forward to being in the future. So those are the general topics. Within that, we don’t have a list of questions. We coach our volunteers and our writers to follow the person they’re talking to and see where they want to go and let them guide the interview as much as possible.

Eric: And what do you do with that?

Thor: What do you do with that? You mean once it’s done?

Eric: Yeah, once you’re done, what happens to it?

Thor: After the interview’s done in almost every place, the interviewer is the person who writes the story. So from that interview, which is, at least in the VA and Madison is about 50 minutes is our average length. From that we turn that recording… Sometimes it’s an audio recording, sometimes it’s notes. We turn that into a first-person narrative. So it’s told in the veteran’s voice using as much of their vernacular speech and language as possible. So it sounds like them. And we try to keep it to 1,000 words. So roughly two to three pages. And the reason for that is so we want providers to actually read them or at least be able to glance through them depending on their workload and what’s going on that day sometimes.

Eric: And you put that in the chart too, is that right?

Thor: That goes in the chart, yes. And I guess one important thing too is that it only goes in the chart after we have reviewed it with vet or the patient. So they have to give the thumbs up and say, “I want that in there.” And they can make changes if they want, edits and stuff like that. So it’s always with their consent, that the interviews are with their consent and entering into the chart is also with their consent.

Eric: I love that. Bucks the trend of most charting nowadays, which is click boxes and completely unhelpful stuff that is just done with a mouse versus this narrative format. Heather, what should I be calling this by the way? Storytelling? Patient narratives?

Heather: I think I’ve had many, many conversations about this and because I am in that program, I research, of course I would never put the word story in one of my NIH grant applications. So I try to think about narrative and story interchangeably, but I really think story or storytelling, it comes from the humanity. So for the general public story or storytelling is a much more approachable word and probably has more meaning. But if you’re thinking about the literature world or the humanities world or the world I’m living in and trying to continue to have funding to run this program of research around person-centered narratives, I have narratives. So I really do vacillate back and forth. Do I walk into a person that I’m… A potential participant and say, “I’d like to collect your person-centered narrative”? We use story across the space because I think it’s just more an approachable word. We can get very heady over on the academic side of things. So I go back and forth between both. Depends om my audience.

Eric: And what are you doing as far as a research project? How are you looking into this?

Heather: Yeah. So like I said, I got to meet Thor, I believe it was May, 2016. I just blew up to Madison, spent the week with his team and trained and learned all about all the fantastic things that were happening with My Life, My Story program. And then came back. And so mine is here at the University of Colorado system, so a non-VA system, so different electronic health records, we have Epic. And so began the journey of, okay, how can we emulate what they’re doing with a different electronic health record program? Working with our clinical decision support team and thinking about where that could be. I was successful and had funding. And so in the moment of going, we need to do this now, we ended up putting these first-person narratives. Just like Thor was talking about, we do a co-creation process, which is that going back to the patient and saying, “Here’s what’s been written.”

We say, “Please, change it or delete anything that is in here because we want it to reflect what you want it to say, not what we want it to say on our side.” And then when that is approval done, it goes up and then we have an alert that goes out too for me because I’m in the nursing space to that acute care bedside nurse in the inpatient setting. So I’ve run two studies, we’ve done one feasibility, exit interview data says patients love it. That makes sense. It was doable in an acute care setting. And of course the nurses really and so there’s a pub which is labeled connection, the integration of person center [inaudible 00:16:08]. Because when I was doing my exit interviews as part of the feasibility aspects and Thor and I have had multiple conversations.

I said I didn’t ask anybody in my interview guide questions and use the word connection in those stems of what I was asking, but 100% every nurse and every patient when I was asking my, did you like to do this? Would you do this again? What did this mean for you? The word connection was what happened. And as a clinician for over 28 years, I feel that some of that healthcare systematic structure that we have, the check boxes that only allows to type 28 words in a free text box, has decreased that connection to remind us as clinicians, why we do what we do and then also provide more human centered care, person-centered care for the people that come into these big structures called hospitals. So it’s a very scary culture for people who are not in healthcare. And so if we can just find a connection.

So one of my exit interview nurses said, “I connected with them because…” It was actually music, Alex. You would love this because in that story that was in that patient CHR was a particular song that had meant a lot to this individual. And the nurse said, “That story meant a lot to me and now we’re like best friends,” every time this heart failure patient is coming back in and out. So it provided just a gem of something, connection around this story that had both been meaningful to both individuals, we’re humans too, clinicians. So we have past stories experiences. Our patients have past stories and experiences and if we can find those connections, even though the care that… The healthcare system is a can be sometimes a difficult place to be either for us as clinicians after we’ve lived through this pandemic or for the patient because they don’t want to be in a hospital, it just humanizes that aspect and provides a space for more person-centered care in our really defragmented, really dehumanizing healthcare system.

Alex: Yeah. I love the way you put that and probably even more so during COVID. And just taking a step back when I think about sharing stories and understanding patients’ narratives and their life stories, forming those connections with them, those deep connections to understand who they are, where they’ve come from, what’s important to them, I guess part of me feels like is this something that we should study? Here we have a poet, Thor Ringler, should we study poetry and medicine? Is that something we should… It seems reductionist to try and figure out, okay, what patient outcomes is this?

Eric: What does it do to IL2 levels-

Alex: Yes, exactly. Yeah.

Eric: Inflammatory markers?

Alex: Yes. Length of stay. Why study this? What’s the reason? Heather, I’ll put it to you first.

Heather: Sure. So I have a partner who is in the humanities and he will say, “You don’t need to study. This makes common sense for just being a good human, whether you’re a clinician or the patient.” So I do hear you Alex, in that space of why do we have to study it? I think the difficulty is in our healthcare system we have, as I said, depersonalize that space. And so for me, when I think about my work, and Thor and I have talked about this a lot, it is for those patient outcomes. So the patient outcomes that I’m currently in my IRB approved protocols, quality of communication, which is actually Dr. Randall Curtis’ team from the University of Washington Measure. It’s 19 items and it’s two constructs. The first is just quality of communication, general communication, and then the next construct is quality communication around worsening illness and death.

So from that then I also look at patient reported measures which tries to capture the patients’ biopsychosocial wellbeing. So promise measures such as the Promise 29 profile and the psychosocial illness impact, which actually is about negative and positive, that meaning and purpose or existential aspects of how the patients are finding meaning in life or maybe not having meaning in life from the negative aspects. Because for systems to uptake these kinds of delivery models, as researchers we’re trying to prove the worth, get the significant P value. And I think those are the things that Thor, when I think about the program I research, I think, I wish my system would just say, “Let’s do this program.” And so Thor’s program, which is now in many, many, many VAs from My Life, My Story initiative that started with his group years ago, gives me the hope that systems can consider having person-centered delivery of care. I think all of us and healthcare as current clinicians today after what we’ve just lived through, really need to have these connections to understand why we’re there or we’re not going to stay where we’re at.

And so that comes I think from my palliative care background, knowing that the work that I do is very meaningful to me, but I think also hopefully meaningful to patients and their families as we help them move through their illness journey, whatever that journey is for them. But Thor’s work gives me hope because I’m like, if it can be in one system and just blow up and go to many, many systems, we can do this.

Eric: And in your work, Heather, is there a structured format for the interviews?

Heather: So leaning back into those narrative analysis, as you can imagine, it’s very open-ended. So if you think about qualitative methodologies, there are some semi-structured interview questions, but these are just open-ended. I think the other interesting thing that we’ve learned going through this process is we actually collect our demographics, not via survey but actually in that narrative interview. So you can imagine, think about the demographics we want to know, we allow the person to audio, to answer those questions demographically. And then we ask those four key questions, tell me about you, tell me about your illness, that kind of aspect. So it’s the collective of in research we need demographics and then leaning into, and I call those demographics our warmup questions, think about the trust and rapport that you’re trying to capture when you’re meeting a person for the first time ever.

And then we get into those deep ear questions, tell me about you, tell me your illness. So that’s really the structure, but really trying to stay more open-ended and letting that person, and sometimes they’re families. So I allow family members to be present if they want them to. That’s fine. Co-create a story amongst three or four family members and the interview gatherer, whoever that is, the story catcher, because I think that’s a space of also now we have a narrative and the family is interacting and maybe some of those narratives haven’t been said before. Now you have patient and family connection.

Eric: I guess one question is when I went to med school we were trained to do an HPI, starts off with a history, we talk about their illness, we get a history of their symptom burden. Why is this any different than that?

Heather: So the two things that I talk about is as a palliative care clinician, I have my structure that I need to fill in for my billing note, my HPI and my other things that I need to have in that note so it can go out to properly be billed. The flip side of this is in those notes so much of that is about how the patient is and not who. I think we also lean into, I’ve learned so much from my social work colleagues and/or my spiritual care provider colleagues because they do really lean into some of these other aspects of the who, not just the physical. And I’ve learned a lot from my particular research assistant here who is not a clinician trained research assistant. She’s a clinical research coordinator trained for many years. She’ll say, “Why are you always talking about their illness?” The person does not identify who they are as the person in room 222 with heart failure. That’s what we do as clinicians. They’re John who’s a father, who’s a grandfather. That is who the patients see themselves as. And that’s what these narratives are about.

Alex: Thor, I want to come back to you with this. When you hear about this research stuff, does it make your skin crawl and you’re like, why are we studying this? Or maybe thank God somebody’s doing it but not me. And also this blew up in the VA system and now we’re trying to study it. Is that because we had enough evidence to do it or is it because people in the VA were like, this is important? This is important. I don’t need more evidence to know that this is important. This has face validity. I get why this is important for our veterans. I don’t need to show that some of these outcomes change in order to implement it system wide. Thoughts from you, Thor?

Thor: Hey, great question, Alex. Yeah, I think it’s the second one. I think it’s like I’m glad somebody’s doing it but not me. And I think you had spoken earlier about just the inherent value of certain human behaviors and certain things that we do. To me, arguing that stories are important and connect people and proving that through a study is proving the importance of love and what it means. What is love? Why do we do it? It’s something that’s basic to humans, narrative is, and we tell stories all the time. We’re sharing stories right now. We tell stories to our kids, we grow up listening to stories. Everything on TV is a story. Everything podcast. It’s just all narrative. And so narrative is how we shape the world and interpret it, but also how we emotionally connect to it. And so there’s a power there that isn’t in the language of the chart currently today.

The language of the chart is data, third-person due to this, this, this, and facts. Narrative takes those things, those items, weaves it into a story, puts a voice into it as well. And the voice I think is what we really connect with. And so for me, you asked the question of is the VA waiting for research to come through? No, it’s not because I think the VA realizes because we’re a mission driven organization, we’re here because we care about veterans. We want to help them not only heal, but also to help them hear their own stories, to tell their own stories, to feel validated in the world, to feel like we hear them, to know that we hear them. And these stories do that in a way that nothing else does. And I just want to share just a couple things that Heather was talking on and Heather, you spark me when you’re talking about this.

The idea of warmup questions, I think you do it through the questions about demographics. Our warmup, unless someone has a really specific place to start, our warmup is really simple. We just ask people where were you born? Tell me about your family. What was your brother’s name? What was your sister’s name? What did your parents do? These really simple questions. And then I think part of the issue that you face in a clinical setting, especially in a hospital, is everyone who comes into the room wants something really specific. They want your blood pressure, they want to know your pain scale, they want to know whether you had a bowel movement, when was your most recent bowel movement, all these things. So these are all really specific questions. So it takes them a little bit of time to adjust to this idea that oh, you’re just there to talk and you’re just like, oh well, what do you want?

It’s a different thing. So you’re shaking them out of patient mode and giving them out a patient mode and letting them become a person. And I think Heather, you’d also mentioned this idea of people… In your first example, you had talked about a patient you interviewed who just lit up during this process. And I’ve had that happen. I remember early on just being amazed by how I would go into a room and my perception, I’m not a medical provider, going into the room was like, oh wow, I have this sick old person laying in bed. Oh my gosh. And so I sit down and then what’s remarkable not only in the course of that 50 minutes, when they share this themselves with you, is first of all your perception of them changes and their perception of them changes.

So the frail patient in the bed who is laying there and a helpless thing and object of pity who we’re trying to help becomes this animated person with this rich in a very intense and amazing life in front of you. And they literally grow in size in your eyes during the course of that interview and become animated. So I think that process is a magic process. It’s not something you can measure, but it’s definitely something that happens during these interviews.

Alex: I want to ask, we have to mention Harvey Chochinov because so much, he’s a giant in this field and much of this work is related to his dignity therapy approach. I just realized we haven’t had him on GeriPal. We need to remedy that issue, Eric. We need to get Harvey on GeriPal. You did write a blog post about him though, Eric. In 2011 he published a Lancet Oncology article about dignity therapy and before we get to whether it works or whether it doesn’t work in evidence since then, because 2011 was a long time ago, I just want to point out that there were some gems of questions in dignity therapy and I’m sure that you have some really questions that… We’ve talked about the general categories, but I wonder if there are some more specific questions that you found to be particularly useful from dignity therapy.

When did you feel most alive? I love that question. When did you feel most alive? What are your hopes and dreams for your loved ones? Are there particular things that you feel still need to be said to your loved ones or things you would want to take the time to say once again? What have you learned about life that you would want to pass along to others? And these are a little bit more palliative care centric than things we might use with a general population of hospitalized old adults or people in the nursing home or in the outpatient setting because there’s that feeling of life closure and legacy in some of these questions. Nonetheless, I just wanted to open up and see if there are any key other questions that you have for our listeners that they might just pull out to use in their practice of sharing stories with patients.

Heather: Because we’re talking about narratives, there’s actually another text. And by the way, Harvey has a brand new book out Dignity and Care. So please do check it out and I hope he comes onto the podcast. In the legacy space, Steven letter for you when I’m gone, 12 essential questions to tell a live story. So if you’re leaning into this legacy and life story, you just go to Google and there are many, many different kinds of questions. Some of them being very 45, they’re StoryCorps and they actually have a program out that is encouraging younger person, so like a granddaughter or grandson to then reach out to their grandparents and then they can record and literally put it into StoryCorps, which then becomes part of the National Library of Medicine. So there’s a lot of different kinds of legacy programs out there. And of course they’re running big, they may be privately funded, a lot of them probably aren’t grant funded because they’re just running it as a program like Thor’s is.

I think on the flip side, for me, when I was thinking about all of those kinds of programs and then thinking about the big acute care hospital and knowing that I’ve been living and breathing in that acute care hospital for so many years, to think about what Harvey has done with his legacy booklets when I went to his training, some of those documents are like 22 pages and they spend a couple of weeks to create this legacy document that then begins a gift to that person and their family. But because I was such a clinician, I was like, okay, I know what my clinical work looks like. I’m not going to have time to read 22 pages of this legacy document. So it’s this tension that I constantly think about. And Thor and I have talked about these tensions of getting something that is usable, acceptable, and I think acceptable from two places.

It’s not just about for the patient or the person living with fill in the blank illness, but it is something that’s acceptable for those clinical teams to use pragmatically to take that into their daily aspects of the care that they’re providing for people who are in our systems. So that’s my thoughts about that. I love all the dignity stuff and I want something that is 100% usable. Even in the crazy hurried clinic space, the interesting thing, I have had two or three outpatient clinic managers email me that said, “I saw this narrative.” So it got put in when the acute care and it just anecdotally, I’m not tinging them, but I literally have a patient story tab that sits over on the left side of the patients and that’s where it says, and it says, patient story.

And if you hover to discover it says, want to know more about who your patient is? And that’s what the little popup box says. And so people are seeing these narratives as the patients move across outpatient, back to inpatient, outpatient. I love that. And that’s my hope. Can I study that longitudinally? Sure. And so my work’s life is set out for me.

Eric: How about you Thor? Any response to Alex’s questions about key questions?

Thor: Yeah. I think what I was thinking when you asked that, Alex, was two things. I guess over the years I feel like it hasn’t become so much about the questions, it’s become about who you are in the interview. And so for me as an interviewer, I think that two most important things that I’ve learned and the things that I lean into are I lean into what I don’t know. I lean into my own lack of knowledge. I approach it as a know nothing. I approach this person as someone who knows nothing. I’m a fool, teach me about you. Okay. So I feel like that’s a valuable perspective to come into when you’re talking to someone.

And the other thing that I really lean into is silence. Trust the silence when it’s there and don’t interrupt it. And if you’re in an awkward place and you feel like, oh I want to say something, what’s going on? If you cannot say something for 10, 20, 30 seconds, you can get to a totally different place in the interview and you can let the person get to where they’re talking rather than you guiding them. And so I guess those aren’t really questions, but those are really important things that I feel like you need to do.

Eric: I love that. As a doctor, I think this is probably why it’s so hard because we want to know everything. We feel like we should know everything even before we see people. And even the question about… I want to know what are the four questions I should ask somebody? Get checklist in some ways. And it sounds like probably the most important thing is just listen, drop your agenda and just be there for the conversation.

Heather: And I think Eric, that’s where I go. The healthcare system as it’s built in our kind of US space or westernized space has not allowed us to have time. So those are also in my publications about both people saying time, whether it’s the person. So I’ve had persons say to me, “Oh, can you come back and help me write my autobiography that I was wanting to write and then put that in my chart?” I was like, “Then the clinicians won’t read your autobiography but use this as your first chapter and go.” I’ve had clinicians say to me, “I don’t have time.” The time is a real thing. So I think that’s part of that sustainability aspect is where’s the balance of usable across this interactive process called clinical healthcare team, busy US healthcare system and what’s meaningful to both of the persons living with the illness who are in our systems and us who are providing that care in the systems?

Eric: And do you have an idea of costs?

Heather: I think some of that stuff I’m capturing… So I’m just finishing up a three-year study that actually tested in a randomized control pilot trial, these outcomes. So we capture the cost and just like Thor, our interviews are about 45 minutes. And so thinking about my palliative care clinical visits, I get 40 minutes for return. But even then, we’re looking at RBU’s, and if it’s a new patient, do I get a little bit longer time? Sure. So that’s the tension of like that, where can this be done? Whose role is this? Who best would be this? In fact, my research assistant who is not a clinician, I would say probably does a better job capturing these narratives than I do because I’m trained as a clinician to ask the questions, get the agenda because I need to write a billable note.

So thinking about that and who the best process and I think Thor’s with the VA systems, their different hospitals are all doing it in different ways and we can all learn within our context of the system we work in what might that look like. But cost-wise, it’s that time as well, 45 minutes. But then it takes about an hour to an hour and a half for us to write the co-creative, go back and put… It’s about 15 minutes in the acute care setting for the person to read it, change out or delete and then up we go. So a three-hour process and then whose time is that? Depends on who’s doing it and how costly that is. Or volunteers, we have volunteers on our palliative care team that are doing story catching, not in my research project because I don’t have persons who are receiving formal palliative care consults. I’m trying to get upstream people who don’t have palliative care consult because I think we do capture narratives in our palliative care notes. They’re just a 20-page document because there’s so much detail in there that we as clinicians type, but it’s not first-person.

Thor: I was just going to say, Heather, I love how you call it story catching. That’s such a great term for it. I struggle a lot with who we are, who our role is doing this listing. And obviously we’re listeners and the writers, but story catcher has a nice feeling to it because it implies that they’re out there and it just needs somebody to do the catching. It’s not like we’re going out and making it happen, it’s they’re there all the time. It’s falling from the sky. It’s in the rooms of every patient that we see. They’re there and all we need to do is catch them. So I love how you say that.

Alex: I love that too. I want to go back also something you said earlier, Thor, about it’s the attitude in going into these meetings and that’s something that might spread out beyond these encounters. And you would hope that clinicians are engaging in storytelling with patients or story catching outside of these specific assigned tasks. Faith Fitzgerald, who we referenced on a recent podcast as being a great critic of prognosis when she said it was the punctilious quantification of the inherently amorphous, but she also wrote one of my favorite articles called Curiosity in Annals of Internal Medicine. I may have talked about it before. You both are nodding your heads. I see you’ve heard of it. She talks about the need to go in with an attitude of curiosity and she gives some examples of patient, of when she was dean and she was interacting with med students and residents, examples of how could they not be curious.

Here’s one, a senior resident presented a patient morning report and the physical exam said the patient had a scar in the groin. When I asked how the scar was acquired, she said, “He told me he was bitten by a snake there.” “How did that happen?” I asked. “I don’t know,” she said. And Faith writes, how could that be? How could you not ask how they got bitten by a snake in their groin? The imagination runs right with the possibilities. Another, students presenting says the patient has had below the knee amputation times two. They did a bedside interview presentation and Faith Fitzgerald standing there, “I saw the patient had legs.” I asked the student, “Did you find legs on your physical exam?” “Yes,” he said. “Then how did he have bilateral below the knee amputations? Why did you think that?” It was in the chart. We have to go beyond that.

And so she challenges her students to come up with the dullest patient that they could find and she goes and interviews this person and that she’s not getting anywhere. And she finally, she says, “How long have you lived in San Francisco?” “Years and years.” Was she here for the earthquake? No. She came after. Where’d she come from? Ireland. When did she come? 1912. Had she ever been to a hospital for once? How did that happen? She broke her arm. How did she break her arm? A trunk fell on it. A trunk? Yeah. What kind of trunk? A steamer trunk? How did that happen? The boat lurched. A boat? What boat? It hit iceberg. Oh, what was the name of the boat? The Titanic. And suddenly she’s like the most interesting patient in the hospital. So that attitude, as you talk about Thor, is just essential here. Just wanted to highlight that as we’re winding down.

Eric: I think that’s a great place to add. I do want to highlight, we’re going to have links in our show notes. The VA actually has, I think from Boston implementation guides for My Life, My Story both for faculties and trainees and a bunch of other great links. So we’ll include that in our show notes. But before we end this, I want to turn it over to Alex who’s going to play a little bit more of that song.

Alex: (singing) “It really breaks my heart just to see a dear old friend go down in the worn out place again. Do you know the sound of a closing door? Have you heard that sound somewhere before? Do you wonder if she knows you anymore? I wrapped my love around you like a chain, but I never was afraid that it would die. You can dance in a hurricane, but only if you’re standing in the eye.”

Eric: Heather, Thor, thank you for joining us on the podcast.

Heather: Thanks for having us.

Thor: Yeah, thank you. It was really nice. Thank you.

Eric: And thank you to all our listeners. Again, we’ll have a bunch of links on our show notes. Just go to

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