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Two weeks ago on the GeriPal podcast we talked about why and how to write for the general public.  This week we’ve invited three guests to share their stories about storytelling that’s written for healthcare providers.

The first guest is Liz Salmi.  Liz wrote a fabulous perspectives piece in the NEJM titled “Deciding on My Dimples” which talks about her experience as a patient doing shared decision making during neurosurgery for resection of an astrocytoma.   In addition to this being a fascinating story, Liz brings in a great perspective as a patient, advocate, researcher, and a punk rocker.

Our second guest is a recurring star of GeriPal, Anne Kelly.  She just published an essay for JAMA Piece of My Mind titled “The Last Visit”.  In this piece Anne describes her experience with the expressions of love she and her mother shared in the last days of her mothers life.

Lastly, but certainly not least, we’ve invited Preeti Malani.  Preeti is the editor for JAMA’s Piece of My Mind section.  We’ve asked Preeti to come on to describe what happens behind the curtain when evaluating these stories, including what makes those few that get accepted stand out.

We’ve also love to hear from you on twitter and facebook your own experiences writing for the medical world (and please include links!)

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

Alex: This is Alex Smith.

Eric: Alex, we got a full house today. We got somebody in between us ,too.

Alex: Yeah, we have three people in studio. Our listeners will be familiar with Anne Kelly, who’s a social worker at the San Francisco VA, on the palliative care service, who wrote a JAMA piece of my mind title The Last Visit. Welcome.

Anne: Hi, guys. Thank you. Happy to be elbowing my way in between you today.

Eric: And also the occasional intro speaker for the GeriPal podcast. You’ll recognize her voice from that.

Alex: We also have Liz Salmi, who is a communications and patient initiatives director at OpenNotes at Beth Israel Deaconess Medical Center in Boston, and tweets @TheLizArmy, where her description is be one, do one, teach one. We’ll hear more about that. She’s the author of a NEJM Perspective titled Deciding on My Dimples. Welcome, Liz, to the GeriPal podcast.

Liz: Yay. Thanks for having me.

Alex: We’re delighted to welcome Preeti Malani, who is professor of medicine in the Division of Infectious Disease at the University of Michigan, my alma mater. Woo-hoo.

Preeti: Woo-hoo.

Alex: An ID doc and geriatrician, deputy editor, and director of editorial equity at JAMA and editor of the Piece of My Mind section at JAMA. Welcome to the GeriPal podcast, Preeti.

Preeti: Thank you so much for having me.

Eric: So this is going to be part two of a series we have on writing. The first one we did with Louise Aronson and Rosanne Leipzig on Writing for the Lay Public. Today we’re going to be talking about narrative writing specifically for healthcare professionals. So unlike academic journals and elsewhere. But before we go into that topic, I think, Liz, you got a song request for Alex.

Liz: That’s right. It’s called the Beginning of the End and it’s by Weezer.

Eric: Why’d you pick this song?

Liz: So I used to be the drummer in a punk rock band. And so-

Eric: Get out of here.

Liz: No, it’s true. The lyrics to the song, which are by Rivers Cuomo, who’s the lyricist/songwriter for Weezer, I believe what the story is telling is talking about as the front man for a band, he’s thinking about what you’re thinking right as you’re about to go onto a stage and perform in front of this huge audience, as these rock stars.

But my piece in the New England Journal is about being a patient right before awake brain surgery. When I was preparing for surgery, that feeling, the nervousness about going live on stage in front of the surgical audience, the lyrics for that became my theme song. I just had two awake surgeries in the last year and a half.

And so, it’s about going live on stage in the medical audience, and everything from the whiteboard in the surgery room saying, “Here’s the lineup. Who’s up next for surgery?” and seeing my name on that list of I’m up next, I’m on stage next, really spoke to me. That’s how I interpret the lyrics.

Alex: That’s great. Thank you for that story and for this suggestion. Here we go, without the whole punk rock band and drummer behind me, a little bit of the song. (singing)

Eric: Liz, what was your punk rock band’s name?

Liz: It was called Lucky Strike.

Eric: Lucky Strike. Lovely song. I think it’s perfect for the topic at hand. Liz, I’m going to start with you. So you’ve been dealing with astrocytoma, right? You’ve had four craniotomies.

Liz: Right.

Eric: You are active on social media, on Twitter. You’ve written notes. Why did you decide to write this piece for New England Journal’s Perspective? What motivated you to reach out to the healthcare audience in this way?

Liz: Yeah, I mean I’m a person living with a grade two astrocytoma for the last 15 years. My entree into healthcare is not in the academic space at all. It’s a real lived patient experience. I started blogging as a patient, just talking about my own story online like patients did back in the day.

Then I got online as a patient advocate and started connecting with the brain tumor community on social media and Facebook and Twitter, and actually started working in the healthcare space, in palliative care advocacy, for a palliative care advocacy organization in California, which is where I’m based, about eight years ago.

Then that transitioned to this world of actually working in academic medicine for Beth Israel Deaconess Medical Center, on the OpenNotes project, as both a communication specialist but also really being passionate about … One of my favorite things is taking complicated concepts and translating it to a lay audience in healthcare as a communicator. Then in the OpenNotes work that I do, I was hired to take something complicated like transparency and patients having access to their full records in medicine, and then making that something that the lay public understood.

And so, in that work, working with Beth Israel in this academic medical center, I was exposed to people who write papers. I was not trained formally at all in this academic space, but when I’m hanging out with a whole bunch of academics and they’re all writing papers, I was like, wait a minute, I could write papers, too. Wow. This formula for writing a paper, the intro, the methods, what did we learn, the results, and then what does the big picture say, that type of writing really made sense. It’s a formula essentially.

Coming from a communications background and my form of writing, my formula is writing for Associated Press style, AP style, and it’s a formula. So I was like, wait a minute, there’s a formula for academic writing. I could learn this.

And so, my colleagues and mentors from OpenNotes in Beth Israel really supported me in absorbing everything about how to write for academics. I as a patient advocate was obsessed with, wow, patients could do this, too. We have stories to tell. How do I translate that?

So fast-forwarding to why did I write this specific paper was I, in the last year and a half, have had two awake brain surgeries with my wonderful neurosurgeon, Dr. Hervey-Jumper, at UCSF. He’s a rock star.

Having the first surgery about a year and a half ago, I got to experience live, real time, something brand new, awake surgery, brain surgery. Wild. And I learned so much and I really tried to take notes during that experience. I was like maybe I’ll write a blog post about this later. But it’s hard to remember all of that and like am I an unreliable narrator as a person who’s writing something during this awake surgery?

But because I had a recurrence very quickly, within six months, I got to go into surgery again. Then I was able to refer to the first surgery just six months earlier and think about it going into the surgery. I was like can I remember everything this time around? What can I learn? I really want to take notes during surgery. It’s very meta.

And so, going into the surgery, I was laser-focused on trying to remember everything. I’m going to try to remember as much as I can, so when I wake up, can I write a … My thought was I’m going to write a cool blog post about this.

And so, when I started to write blog posts like a week later coming out of surgery, thinking I just put something out on Twitter and do a Twitter thread, one of my mentors, Dr. Tom Delbanco, at the Beth Israel, I said, “Hey, I’m going to write a Twitter thread about my awake surgery,” and he’s like, “Stop. No. This is huge. No. This is bigger than a Twitter thread. What you’re telling me is a paper that should be captured in the academic literature somewhere.”

And so, I started going down the rabbit hole of what journal would accept this story and how to frame it and who is the audience? To me, it’s all the clinicians everywhere, and how to write it, how to have it accepted.

And so, we can go further into that, but really it was to stop and write it for an academic and clinician audience. To me, it’s not just all the doctors, but also specifically surgeons as well, because they’re a different beast. So I’ll stop there.

Eric: Yeah, I can also imagine … So writing a traditional academic journal article is, one, you said it’s formulaic in a way. You have the same sections. Writing this piece for New England Journal Perspectives is much less-

Liz: Different. Yeah.

Eric: Yeah, it’s very different because-

Liz: Yeah. So these perspective pieces are narrative pieces, just like we’re going to talk about in a second with the other piece. As a patient, first-person perspective blogger, it made sense to write a perspective first person. I think for most academics, they have a hard time writing first person. They want to go into third person. They-

Eric: The study showed.

Liz: Yeah, yeah. It’s really easy as a patient to tell your story first person, but I really wanted to level it up going, wow, if I’m really aiming for the New England Journal, this has to be good, because then if they see it and they don’t like it and reject it. Like, okay, I wrote this for this journal, I want to make sure it works for the backup journals, which were also cool candidates as well.

Eric: Anne, hearing that … And Kelly sitting stage left. I don’t even know what stage means. Anyways, you wrote a piece, JAMA, Piece of My Mind. It’s called The Last Visit, about your experience with your mom and the last visit that you had with her. I’m wondering, hearing Liz’s story about how things came to fruition with her New England Journal piece, did any of that resonate with you?

Anne: I had a very different path toward this process. So my piece is really reflections around caring for my mom who died toward the beginning of the pandemic in 2020, and the influence of my work in hospice and palliative care and the perspective that I brought to my care for her in that time.

Since my mom died in 2020 until I wrote this piece in the fall of last year, I had not ever expected or intended to write about my experience. I’m not a writer, I would say, and I’m not someone who journals or does other writing activities. As I went through my grief process, journaling and writing was not something I did. It was something I heard could be a good idea, but I really just had no words over time.

And so, it was really in the fall of this last year that for no good, real logical reason, I just felt myself suddenly feeling compelled to write. There was a moment in time where I indulged the feeling. And so, whatever that was, these words that were coming to my mind, I just let myself put them to paper and to see what happened.

Honestly, I thought it was going to end up just being a vent session on a piece of paper, but what came out was something different, and I was struck by that. It was private and it was something I worked on privately over time.

Then as I came, as it took shape and to closer to what it is now, I took a step back and looked at it and just felt like what is this? I don’t know what this is. It feels special to me. It feels important to me. Is it something that just lives in a binder under a bunch of papers in my desk somewhere, or is this something different than that? And so, that’s when I actually took it to Alex here sitting on my left to say, “I don’t know what this is. Help me figure it out.” That’s really what prompted me to work toward considering sharing it in this way.

Eric: Thank you for that story. Yeah, I think there’s one thing writing for yourself, and there’s another writing it for a potentially very large audience that … Probably the sense of vulnerability and-

Alex: Scared to go on is the lyric in the song.

Eric: Did you feel that way, too?

Anne: Yes. It was scary even just to share it with Alex and a few other very trusted people that are very close to me. It was very emotional for me to write it and to reread it. And so, it just brought with it a lot of vulnerability for me personally. And so, when he suggested, “Hey, I think there could be something here,” eventually I also brought Eric into the conversation to say, “What do you think?” They both were saying, “Go for it,” but it actually took me I think maybe two months just sitting on it and really thinking about it, and really thinking about why would I put it out there? For who? For what reason? If I did want to, do I have the courage to do it?

Eric: Yeah. Can I ask, why did you put it out there? For what reason?

Anne: That’s something I’m still figuring out, if I’m honest with you. I think ultimately it was I really trust the people around me, and the people around me were telling me that this could resonate with other people’s experience, that it’s finding words that other people relate to and that for other people, it might resonate with them or feel good to read something like what I wrote.

In the end, I believed you. I decided to believe the people I trusted around me that maybe this could be helpful to someone else. Although I went into it reluctantly, not sure.

Eric: Yeah. Liz, for you, why did you write yours? You said for the surgeons. Is it-

Liz: Well, no. I mean it’s interesting what you’re saying. You were encouraged by colleagues or mentors, “Hey, this is good. You have a story here.” That resonates with me, that a colleague said, “Your blog posts could be bigger than. You could put this somewhere to reach a specific audience.” And so I had a mentor who was like, “Clean that up and make it … This could go somewhere big like JAMA or New England Journal.”

And so, to me, then it became a challenge, like a mission of what is it I want to say? You talked about being a little nervous about, oh, I’m going to … There’s a vulnerability of putting that out there. I realized a little bit later in writing my story about awake surgery is that, well, I recognize that it’s a unique experience.

Not many, even brain neurosurgery patients, get to be awake. Not many people with malignant brain tumors who’ve gone through awake surgery are able to tell these stories. People die. I felt like there’s a little bit of a duty of being a person who could deliver the message about the experience when many others cannot.

So there is this almost higher purpose of representing this perspective, but then being nervous about am I going to be smart enough to put this in the New England Journal? Do I have the right way of explaining this?

Then in submitting the manuscript, I also realized there are two characters in my paper. It’s first person, Liz, who’s going through brain surgery. Then the protagonist is my neurosurgeon, Shawn, who I was like, “Oh my gosh.” I messaged him, I was like, I’m going to write about awake surgery and I’m going to submit it to a journal.” He was like, “You go.”

Then a couple of months later, I’m like, “I think it might be accepted by a big journal, which means more people will see it. I just want you to know.” He was like, “You go. I’m excited for you.” Then it got accepted and I was like, “So just so you know, it’s the New England Journal and people are going to hear about our surgical experience together.” He was overjoyed and excited.

But then when I dug into it a little bit further, I was like, “Well, I just want to make sure you feel comfortable that this isn’t just about me. It’s also about you.” And so, I really wanted to share … So there’s the vulnerability of realizing I’m telling somebody else’s story and I want to make sure I’m representing him well in a way isn’t feeling too exposed, if that makes sense.

Eric: Preeti, I’d love to get your perspective. So we’re starting off with a question of why. Why do this? We’ve heard a couple of reasons why both Anne and Liz did it. You get, I’m guessing, a ton of narrative medicine essays, perspectives. But even taking a step back, why does JAMA even have this section, this Piece of My mind section in it?

Preeti: Thanks for the question, Eric. Before I forget, so, Liz, Shawn was at Michigan for years.

Liz: Oh yeah, I know. Yeah.

Preeti: Just a lovely, lovely person, amazing surgeon. So I smiled when you mentioned that. I know we’ll talk a little bit about Anne’s piece in a moment. But, Eric, the section in JAMA has actually been there since 1980, if you can believe it. It looks very, very different today than it did then. But some things haven’t changed much.

In fact, at the beginning of the pandemic in 2020, we were planning on doing this theme issue, 40 years of a Piece of My Mind, and that actually was published in May, early May of 2020. You can imagine that the planning period was different than the time right before it went up. We picked 40 essays from the past 10 years to highlight. There’s a subjectivity to it, which is difficult.

Why write? To me, I think, at a very basic level, so much about medicine is dehumanizing. Ultimately there’s this human aspect that’s there. There’s this beauty that’s there, whether we’re doing geriatrics, infectious disease, palliative care. It’s really about people.

So much in medicine, especially the health records, the HR, is so not about people and not about the clinicians that deal with the records either. And yet how do you bring that forth? I feel like narrative and storytelling does that.

One difference with the JAMA section that I think trips up some people is that we require written permission from everyone. Anne, I’m sure we probably required your dad or somebody to sign something. Liz, you mentioned Shawn. You took the opportunity to tell him. We would’ve required probably a signature.

It’s amazing that that ends up being a roadblock sometimes, because people are writing things that are so deeply personal, and for a variety of reasons, JAMA has this very high bar around this permission piece. But that’s a little bit of an aside.

Eric, you mentioned … It’s very selective, about a thousand-plus essays and 48 a year are accepted. And so, there are good ones that get passed on. I think it’s very difficult because people are vulnerable. They are coming to you often with something very, very deeply personal.

I’ve never submitted a piece of my mind. I’m not sure I could write one to be honest. As I was cleaning up my office, I found something I’d written in 2016. I think maybe I had that on my radar that I would like to write about something for a Piece of My Mind. It’s funny, I just tucked it aside. I might get back to it and try to maybe send it to New England Journal’s Perspectives.

But I mean my point is that these are beautifully written, most of them. The writing itself is captivating. But it’s the story also. Something that I look for is novelty, a compelling story, but also is there something actionable? Because, for example, we get a lot of pieces on wellness and mental health.

For example, and not to criticize medical students, but sometimes you get an M1 or M2 writing about burnout in physicians, and sometimes I’m like, okay, that’s a harder piece to write about. It’s almost like you’re an outsider looking in versus one of my favorite essays. It’s called Beyond Burnout. Maybe we can share that in the notes. It’s such a gripping piece. But Anne’s piece, and if I may-

Alex: Please.

Preeti: … I just want to read the intro. Anne, I hope that’s okay.

Anne: Sure.

Preeti: It might be easier for me to read it. “The Last Visit. ‘I love you to pieces,’ my mom said this to me two nights before she died. She was sitting up right in her recliner chair, the only place where she could find temporary moments of comfort. It was late at night, the house was dark, and she couldn’t sleep. The sensation of itching pins and needles haunted her right cheek from the shingles she had months earlier. Her back hurt, her hips ached, and her feet, riddled with bandages, hung carefully over the edge of the footrest. She looked at me lying on the couch near her and whispered the words.”

You read that and you want to keep reading. It’s like this subjective thing. If you look at the first paragraph or the first sentences of these pieces, often there is something like that. It’s like this hook that draws you in.

Of course, Anne’s piece, I hope everyone has read it, if you haven’t, it’s such a moving piece. It’s a love story. It’s a story about caregiving. It’s a story about how extraordinarily difficult the pandemic was, not just because of COVID but because of everything else. Thank you, Anne, for writing it, because people read that and that dehumanization is pushed away because it’s such a human story.

Anne: Thank you.

Eric: Let me ask you this, is it actionable? You mentioned actionable. Is it actionable? What actions are we looking for?

Preeti: Yeah. Again, I think not everything is actionable, but I’m going to give you a few examples. Again, the wellbeing pieces, the parenting. There’s a lot of pieces on parenting. There are a lot of pieces in everything from young kids to older kids, to adult children. That caregiving piece, like I want to see something actionable. Sometimes it might be like, hey, if you see microaggressions, step up and say something. I wish that this person had said something.

There’s a great piece written by a physician who describes a racial microaggression. I think she was a student at the time, or a resident, and a patient said something to her and that her team didn’t really at that moment step up and say, “No, this is not acceptable.” I think that’s what I’m talking about with action, or it might be family leave policies. It might be everyone should eat lunch together with other people.

And so, I’m not looking just for a line listing of policy points, but something that you can take away. But the novelty is important.

Alex: So here’s something that I take away … And this may be because I know Anne so well. But from her piece, one of the key aspects from my perspective in reading it is that here we have hospice and palliative care social worker, deeply committed to the field, deeply committed to improving quality of life for people near the end of life. Seen, as you wrote in that piece. Many patients walk this journey, and concerned about people who were nearing the end of life, who end up in the intensive care unit and dying with care that is potentially burdensome to them with little chance of meaningful quality of life.

You introduced the piece talking about how you were there with your mother two days before she died. She’s not in hospice, and you’re talking about admitting her to the hospital. And so, how can this be? How can this be, somebody who’s so deeply invested and embedded in hospice and palliative care, caregiver for her mother? It’s at this point where she’s talking about highly aggressive life-prolonging treatment. What happened here?

And so, the take home for me was that, God, these things are complicated, and they don’t always work out the way that you would think they might work out. We have these quality metrics like hospitalization days before death, used hospice, enrolled in hospice, and days before death.

They’re limited. They’re limited because, on the individual level, when you get down to it, the complexities of these stories and the caring involved may lead to these complex relationships, understanding what the goals are, as you had done with your mom. You’d said she wanted this, but not yet.

Anne: Yeah. I think as folks will learn from reading my essay is my mom was someone who had a lot of … She had multiple medical problems, including end-stage kidney disease and had been on dialysis for a number of years. By that point, her health had declined such that we knew, doctors had warned us that we were getting to a new place, that soon there would come a time where dialysis would no longer be possible.

And so, we had begun bracing ourselves for that and imagining that, of course, when that time comes, hospice will be the service that would be best to support her and us, and keeping her comfortable at home. And we weren’t there yet. We still wanted more time together and hoped with certain interventions that we might be able to buy more time together. It’s really sitting in that crossroads that we found ourselves in that day.

Of course, something unexpected happened the next day that we couldn’t have predicted or foreseen. But, yes, it was a constant tension around when is the right time and living with that.

Eric: It’s also interesting, because when you read these pieces, and I love Piece of My … Is it one of the most red parts of JAMA?

Preeti: Yes, yes, yes. It’s like a thousand words that can transform you. It’s amazing. It’s such a short piece.

Eric: People read into it what they read into it. So, for example, Alex, that was the thing for him. The first time I read it, I immediately thought, “Oh, you’ve got to submit this to JAMA.” Part of it was it was exceptionally timely, the fact that we were talking about the …

COVID was woven into it, in particular isolation, limited access, worrying about transmitting a fatal virus to somebody, this tension that builds up not being able to visit in hospital settings. It just felt like everything is right here, and it’s so important to get this message out about just the trauma that we all went through, not just COVID trauma but all the things that came along with it. It just felt very timely.

I wonder, from your perspective, Preeti, how important is the timeliness? It’s the topic. Wellness comes up a lot, but it feels like that was something that we talked a lot about four years ago, and we’re thinking a lot more about wellness in different ways now than doctors should be mindful.

Preeti: Yeah, I agree. It’s been very interesting, tracking the pandemic. The story of the pandemic is ultimately going to be told in narrative form. It isn’t the randomized trials, which are very important, obviously, for the work that all of us do, the work that I do clinically.

Anne’s piece is a little bit different in that she wrote it later, and you explained that this was part of your grief process. You weren’t sitting out to write an essay about this experience. This was something you were … You’re a grieving daughter and also trying to manage probably a lot of other things during the pandemic. Again, your mom didn’t die from COVID, but it was during a time where we were very worried about this.

If I can share in my own family, my grandmother died early in the pandemic, just before her 97th birthday. My brother and I are both infectious disease physicians and we live near where we grew up. My grandmother lived with my parents. This was in May of 2020. We get that phone call that we’d been dreading for a while.

My grandmother was actually doing quite well overall, but had been declining. A lot of it, I think, was just social and just wasn’t interested in things as much. The discussion that we had was what are we going to do? She really should go to the hospital. But it’s May 2020. It means no one’s going to be able to go in there with her. She couldn’t hear. She didn’t speak English very well. My brother ended up driving her to his hospital, because he said, “At least I can be with her.” What kind of decision, what kind of world do we live in where that’s the decisions we had to make?

Anne, I got that sense. It reminded me of the situation my family had to figure out also, and millions of families had to figure these things out. Thankfully, I think that we have forgotten some of this, but those early days were just … COVID wasn’t the only risk. It was one of 20 risks that we thought about.

Anne: When I hear each of you talking … And, Liz, I’ll be interested to hear your thoughts on this, too … it reminds me around how … So I put myself out there. I didn’t really know what to expect. Actually what I learned is exactly what you guys are illustrating, which is the people for whom my essay resonated, it resonated for them in different ways and for different reasons.

Some people so kindly sent me messages. Some people, it resonated with them around having a deeper sense of empathy for what their patients and their families are going through. For others, it reminded them of the experiences they’ve had in caring for someone that they love in their family. And so, different pieces of it resonated with people differently. I’m wondering, Liz, if that’s been your experience also in the feedback you’ve received.

Liz: Yeah. Thank you for asking me that. That’s very social worker of you to bring me in to the conversation and asking that question. Yeah, my essay was not a timely thing. There was no tie into the moment of COVID.

I’m an empowered patient advocate, individual, and I feel like the motions, the feels were not necessarily in my essay at all. I think for me writing it, there was a little bit of a … To me, it was this is neat. I’m really curious about the experience. I learned something here and I want people to understand what it was like to be in this moment because it’s so rare.

But the responses once it … One, I was excited that it got accepted. I couldn’t believe that happened. And, oh yeah, I want to get back to you, Preeti. You said, “Oh, if this was … I’m surprised the New England Journal didn’t ask for some disclosure or … ” They did. They did. They confirmed. We worked with Shawn and he was like, “You guys go.” So we were good there, too.

But I think the community, the response, that was overwhelming. You don’t need to be a neurosurgeon and have had that surgery experience. What people were excited about was the concept of shared decision-making. That was what was demonstrating in that surgical situation, shared decision-making during surgery at the same time, which then adds that novelty component is, well, how do you do that?

Shawn is demonstrating in a rock star way, how do you do shared decision-making in that moment? Then in talking later with Shawn, I was like, “So did you hear from anyone in neurosurgery what they thought?” He was like, “Oh my gosh, dude. Yes.”

We had two completely different experiences. I had the palliative care, medical, Twitter communities, like, “Shared-decision making. Way to go, Liz.” Then Shawn’s response, from what I’m learning, is neurosurgery was not talking to me, because they don’t know me, but neurosurgery was going to Shawn, saying, “Your patient wrote about you in New England Journal,” and, “You do this? You ask patients live during surgery, like what choice do you want to make? That’s radical.”

And so, I believe he’s having to defend a little bit about this new way that neurosurgery is performed, where you … And we’re not just making these decisions just at that moment in time. There’s many discussions about my quality of life, what is meaningful to me. I’m like it’s all about running and movement. If my foot drop is happening, I understand that, but I still want to move.

So we had all these pre-planning discussions before surgery. So he knew what my goals were, where in that moment, he could say, “Do we stop or do we keep going?” That’s-

Eric: I think that’s an interesting thing, too. It’s going to what Preeti said, it’s both novel and it is very timely. There’s a growing movement around this, and not just traditional shared decision-making but shared decision-making in a way that really I haven’t seen talked about before.

Liz: Extreme. Right. Very extreme. Yeah.

Eric: So let me ask you, Liz, this, is that why a medical journal? You talk about you could do a tutorial. You get some number of people. You can get in New England Journal and you get thousands more. You get into New York Times, you get millions more. Why this avenue?

Liz: Who’s the audience? Who are you writing for? As a patient, patient advocate, like I mentioned how I got into this space, writing to my fellow patient community, writing for fellow patient audiences, writing from an advocacy perspective for the brain tumor community or this emerging patients as researchers and collaborators in the design and conduct of research community. That is growing and existing.

I was just so moved from this experience of, I don’t know, the end … I don’t have someone to recap or read my essay, but at the end I talk about … The last few sentences of my piece is about … Wait, hold on. I’m going to bring it up [inaudible 00:41:17].

Eric: You can pull it up.

Liz: I think I said … The last paragraph, or the last, yeah, paragraph, says, “With surgery in our rear-view mirrors, the decisions we shared are behind us, and our paths as surgeon and patient now diverge. But my curiosity is piqued, and I suspect my next research collaboration will be inspired by my time in the operating room. Once you’ve traveled to the moon, the earth never looks the same again.”

To me, it was the peak of advocating for myself, understanding my needs, partnering with my clinician, my doctor, my surgeon to make decisions that are possibly life-changing. I am just inspired by the partnership that we had.

Sometimes people talk about brain surgery, rocket science as this kind of joke. I was thinking about how there’s this almost outer space experience you have in that situation. The best way I could communicate some situation that other people will probably never have was to compare it to being in outer space. I almost did this whole analogy …

One of the great things these editors do is they’re like, “Bring it down. Bring it down. Too many words”.” I was like I really wanted to talk about this astronaut who’s out in space traveling the moon. But then the neurosurgeon’s there. They’re mission control in Houston guiding you through this process. I wish there was a little more words for it, but hopefully me sharing it here on the podcast will be my space to do that.

Eric: Well, let me ask another question, because this is really about narrative writing, the components of it, the process of getting it into a journal. We talked about this in our last podcast around the lay public is working with editors. Is there a tension between … In that once you’re in that process, you get people giving you feedback about losing your own voice, why you wrote it for yourself, and then now incorporating other people’s voices into your narrative. They’re giving you feedback to change certain aspects, to narrow it down, maybe change words. Do you worry about losing your own voice? I’m going to start with Anne. Thoughts on that?

Anne: I think for me the biggest editing came from having to meet the 1600-word limit for Piece of My Mind. And so, I did a lot of editing and whittling down prior to submitting. Then once it was accepted, after I picked my jaw up off the floor in shock that it was accepted, we went through the editing process.

I would say, in my experience, there was very few things that had to be tweaked. It was really around adjusting a few word choices here and there just to be in keeping with the words that people are using currently. So, for example, in my essay, I initially used the phrase emergency room, and JAMA said, “We use emergency department.” So very minimal changes. So I was lucky in that I didn’t have to be challenged in that way.

Eric: Yeah. Well, we’ll see if Preeti yells at me for this. There were some word choices that you disagreed with, that you also pushed back on.

Anne: There were a couple. There were a couple.

Eric: Can you give me an example?

Anne: Yeah, I mean the editor … or not that, the-

Eric: Copywriter.

Anne: … copywrite editor. Initially, I used the phrase, “I checked my mom’s blood sugar,” and the copywrite editor just automatically changed it to, “I checked my mom’s blood glucose,” which is nothing I would ever say in real life. And so, when I noticed that, I asked permission to learn more about whether it would be really required to use the word glucose or if I could keep blood sugar in there, which would be more in keeping with my natural communication style. In the end, they gave it to me.

Eric: Preeti, how do you think about that, too?

Preeti: Yeah, yeah. So what would’ve happened is I get the essays, I would’ve done the first pass. The piece was really nicely written when it came in, as I recall. It was several months ago now. So I don’t remember the details. But I suspect it’s things like time and precision of language.

But then, you’re right, when it goes to the manuscript editor, sometimes those things, they get … Like doctor gets changed to physician. Sometimes I’m like, “No, doctor is okay. Sometimes you want to say doctor.” There’s flexibility. I think blood sugar, I’m glad we allowed that. They probably asked me and I would’ve said no. Definitely in this section, you wouldn’t use it in a randomized trial, but …

Eric: So it’s okay to push back a little bit if you think something’s important?

Preeti: A little bit. A little bit.

Eric: A little bit.

Preeti: I would say, just quickly, I know we’re wrapping up here, is that I try to preserve the writer’s voice, but making sure some things are clear, the precision of the language isn’t always there. Sometimes there’s just missing pieces or things need to be reorganized a bit.

But these are not heavily edited essays. I mean they’re edited, but they’re not … Anything that needs that much editing wouldn’t probably make it. So you want to see something that’s got a great idea, and then it’s a matter of polishing, I would say, more than hardcore editing.

Eric: Liz, from your perspective, did you ever worry about losing your voice, or did it feel like you were able to keep it the whole time?

Liz: It felt like me the whole time, I’d say, from … Editors, I mean their job … I felt like any edits and tweaks I got were great. They were minor. Then I think the really valuable thing the editor asked me was to say, “Hey, I noticed this entire essay, you were referring to your neurosurgeon by his first name.” I say, “I introduced him as Dr. Shawn Hervey-Jumper. This is his title.” “But then for the rest of the paper, you talked about him as Shawn, first person, as opposed to Dr. Hervey-Jumper. That’s a choice. Do you want to make that choice and wanted to check with me?”

I thought about it. I was like, “Oh my gosh. Am I minimizing Shawn’s expertise and experience by referring to him in this way throughout this whole thing?” So I did text him and I said, “I just got the paper accepted. We’re going through review. Are you okay with this?”

Mainly my decision to say that was that when I was first introduced to him … Well, when my first time meeting him as this is going to be your neurosurgeon to remove your malignant brain tumor, he came into the room first time meeting and said, “Hey, I’m Shawn,” and we shook hands. To me, he’s been Shawn ever since.

And so, that’s how I see him and that’s the way he talks during surgery. And so, I wanted to maintain that, and wanted the audience to recognize this is his personality throughout. From what I’ve learned later, he’s like, “I want to make sure you feel comfortable talking to me because we’re going to be doing a ton of communication during surgery, live, real time. If you wanted me to refer to you as Liz and you want me to be referred to as Shawn, then we’re going to do that.”

And so, having that established situation about how we communicate with each other was key. So the editor wanted to make sure that was okay with both sides, and it was.

Eric: Well, I want to acknowledge that … I want to thank everyone for joining us. I think Preeti actually has to leave right now, so feel free to leave.

Preeti: Yeah.

Eric: But we’re going to end with Alex singing a little bit more of that song.

Alex: Thank you, Preeti.

Anne: Thank you, Preeti.

Liz: Thank you. Thanks. Bye.

Eric: Alex, as Preeti goes off, a little bit more Weezer.

Alex: (Singing).

Eric: Liz, Anne, thank you for joining us today.

Anne: Thank you, guys.

Liz: Thank you. Thanks for the song.

Eric: And thanks for putting your words out there. They’re really impactful, obviously in different ways to different people. So very much appreciate it. Thank you all of our listeners for supporting the GeriPal podcast.

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