Sarah Dabagh: 0:00

Dan. Hi. This is Sarah, and this is Dan, and we'd like to welcome you to pedia,

Daniel Eison: 0:06

a monthly podcast about all things pediatric palliative care as always,

Sarah Dabagh: 0:11

the views on this episode are ours alone and do not represent our respective organizations, and they do not constitute medical advice. The story

Daniel Eison: 0:17

of how this episode came to be is a little bit different than a lot of our other episodes. We got an email from former guest of the podcast, Dr Bob McCauley, and he told us that, very excitingly, he has a book coming out. The book,

Sarah Dabagh: 0:32

which I believe is coming out on June 4, is called because I knew you how some remarkable Sick Kids healed a doctor's soul. And Dr McCauley was kind enough to send us some advanced copies, and as we were reading through them, certain themes emerged, certain thoughts emerged, and the idea of this episode took a little bit of a shift, and so we're going to let our guests speak for themselves, but we've invited on two friends of the podcast, Dr Macaulay and Dr Adrian, who have quite A few things in common, including both being now published authors who have written about their own work doing pediatric palliative care, and we're going to have them sort of come on and introduce themselves. But before we do, it was important for us to say to our listeners that there is a trigger warning for this episode in which we will be addressing themes regarding the childhood sexual abuse. You

Bob Macauley: 1:24

My name is Bob McCauley, and I'm a pediatric palliative care doc at Oregon Health and Science University in Portland, Oregon.

Chris Adrian: 1:31

And I'm Chris Adrian. I'm a pediatric palliative care doctor at Children's Hospital Los Angeles.

Sarah Dabagh: 1:36

Thank you both again for coming. I would love to start Bob, one of the reasons we're here today is because you have a book coming out. I'd love for you to tell our audience a little bit about what the book is, when it's coming out, and how it came to you to write it. Well, it's

Bob Macauley: 1:51

great to be here. Thank you for the invitation. Sarah and Dan and to my friend Chris, it's nice to be here with you. So the book is called because I knew you how some remarkable Sick Kids healed a doctor's soul. And the genesis of that was about now five years ago or so, and I had been reading a bunch of books in the adult palliative care world, really beautiful books about adult palliative care docs and the patients that they had taken care of. Specifically, I think of that good night by Sunita Puri, which is a beautiful book, and I kept thinking to myself as I read these books over a period of time that pediatric palliative care is different. It has a lot of similarities, but it is really unique, as we all know on this call. And so I thought about some patients that meant a lot to me, impacted my life, and illustrated maybe some themes that were missing in books about adults. And the next day, I thought a few more patients, and a couple of days later, I had enough that I started making notes. And then I thought to myself, this might have some legs. So I reached out to the parents of those patients that I was still in touch with, most of the kids who were mentioned in the book. And I asked them, I said, I'm thinking about writing about your child and my experience, would that be okay with you? And with one exception, they said yes. And then we had some very profound zoom calls, mostly during pandemic, and a lot of the time that they were far away, and we remembered about their child together, and then I wrote the various chapters and circled back and made sure that I got everything as right as I could. Then it became a labor of love to find a way to get it published. So a little kernel that I overlooked which anyone who wants to do this should not overlook it. It's always better to get a publisher before you write the book than to write a book about a potentially powerful and not overly attractive in the marketplace subject, and then try to find a publisher. So I did it backwards. It happened to work out. I do not recommend it to my family and friends.

Daniel Eison: 3:53

I almost want to just hear Chris's voice now on this as someone else with expertise in this area, you've also been in in this world of writing about, how is it you put it Bob, a powerful and potentially not market ready subject. So Chris, what's your take on that?

Unknown: 4:09

My solution to the problem of getting someone interested in a book that's going to brighten, terrify or despair at the market is to bait and switch, to propose one book and then turn in another book, which is the book I'm working on now, was was supposed to be a fairly anodyne collection of perspective pieces about medical education, and has turned instead into a memoir of medical education that is mostly about grief, suffering and a visceral rendering of a subject that I kept at arm's length in fiction previously, but now I've turned to in a kind of quasi memoir. They're kind of always written about, about kids in trouble in in one way or another, when faced with the challenge of of joining the kind of endeavor that Bob was describing around how you know that those books are comparatively all over the place in the adult palliative world, but they've been fewer of them in. I think, in the peds world, books that try and bring an understanding of pediatric palliative care and what it's like to be a clinician, to be one, or why we are clinicians. I'm interested

Sarah Dabagh: 5:11

in this description of, sort of, this unintentional memoir, and this transition into a memoir as you write about kids in trouble and Bob, I wonder if you can touch on this too. You started your description of writing this book is talking about the stories of other people and other children, but it's impossible not to leave your own story in in some way, as you piece those stories together into a novel. And I'm wondering if you can touch on what telling your own story as part of this was like, yeah, it

Bob Macauley: 5:41

was an interesting road in the sense that the early versions are significantly different than the final version, and the reason for that is I shared the manuscript. Took me about two years or so to put it together, and then I shared it with a few people whose opinions I really trust, and every single one said the same thing. They said that this book needs more of your as in my voice in it, because we in the practice of pediatric palliative care, to state the obvious, we engage in such profound relationships and situations that I think we can't help but be changed. And so if we take a more kind of removed, analytical view, we don't really do justice to the power of the stories. And so with that invitation, I started diving a little bit deeper, and it was really only in the course of writing the book, although it was not the purpose of writing the book, but a sort of side effect, if you will, that I began to tie together some big loose ends in my own life that what people if they choose to read the book that's come through so much editing over so much time that hopefully those strands have been tied together in the text, but it took me a long time to tie them together in my own mind, to put them to paper, to understand what it was about the work that we do that drew me to it, and to understand how much the kids and families that I have treated and come to know and truly been inspired by have changed my life. And so it was really about the 30th revision at the end, when I finally put it all together. That if somebody were to say, like, can you condense this book into a sentence or two, I'd say it's a thank you note, like it's a thank you note to these kids and their families for showing me what the goodness and the courage that human beings are capable of that resonates

Unknown: 7:52

for me, in particular, that gratitude for being in a place where somebody else shows you the best in the world, having experienced the worst of it, and something that You know, that I struggle with, even just as a clinician, and it's probably true of any for any clinician, but maybe particularly for us, that presence is so much a part of our clinical method that if you can't really be present in the room with somebody, you're going to miss something, or you'll be impaired in your process or in your method. And there is something about about not being able to be fully present with my own history as child, or as a child who encountered the worst of the world or the worst of what people have to offer each other, that made it hard for me to be present for the kids and families I was working with. In a funny way, there was a strength I think I borrowed to face my own stuff that in turn let me come back into the room to be present for them and help them. And it was this, you know, this very surprising and astonishing, somewhat painful at first circle, but once it got going, it felt like a way into the work that was finally sustainable. Like no one's gonna remember what a self winding watch was, but there used to be watches that they wound just when you raised your your hand up to look at the watch style that felt like that.

Daniel Eison: 9:03

What both of you have started to talk about, but we've spoken about, just implicitly so far, is you've both made mention of personally experiencing some of the worst of what the world has to offer, and how that has influenced the work that you do, the writing that you do, and I'm, I'm wondering if you can talk more about the way that watch wines itself. I appreciate

Bob Macauley: 9:27

that. Dan, so for me, and I'm sort of used to kind of more of a lead up to this, I don't really start here, and so I appreciate the chance to sort of have some conversation beforehand. But so I was sexually abused as a child, and I think that it's taken me a long time to understand how that has impacted my life. Looking back, the pieces fit together actually really well. I just couldn't put them together very quickly, because I think that when. Someone experiences trauma, it throws a whole lot of variables into the mix, and oftentimes impacts your ability to see and understand and I think that the early drafts of the book, especially, I didn't go into that quite as much, or not nearly as much, for a couple of reasons. One is, I think I was trying to protect the reader just a smidge like, this is a story in the book of 18 or 20 kids I've taken care of. Most of them did not survive. And so I could imagine somebody reading that being like, well, I can't get any sadder than that, and me being like, well, actually, don't. Don't sell me short. I can. I can make it sadder than that. That just seemed like piling on. The other piece too, that I really struggled with, and continue to struggle with, is so I had something happened to me that was really bad. I don't want to equate that with a parent losing a child. So are they both sad? Yes, this is not a competition, and if it were, I would lose hands down seven days a week. I don't ever want to be put in the same category as parents who have gone through what the read parents have gone through. I sometimes say that I experienced a grief adjacent world compared to what they experience. Do I have a sense of what they go through? I think maybe, but nothing close to what they have experienced in losing a child, and it was really in the conversations that I had with the parents that I spoke with in writing the book, that I think implicitly, because this didn't really, I didn't share my own story with them, but we were talking about their stories implicitly, I think they gave me permission to share my own story, because I Don't think parents want to have a corner on that market. It's not like they're out there telling everybody when someone else has a hard day, well, you don't know what a hard day is. I know what a hard like. I've never experienced a brief parent do that when they encounter somebody who's having a bad day in that person's own world, whether that's like running late for work or something not that big a deal. They have compassion for that person, like their goal is not to win the contest of who hurts the most. Their goal is to try to make the world hurt a little less. When I saw that, then I said, I think I can speak from the heart more than I did early on.

Unknown: 12:17

I guess I can say Bob and I are not in the same club that no one would ever choose to be in. Also was was sexually abused as a young kid. And also, typically, I think, because it's getting different in a good way, that men and women, men, especially men, are going to get help around earlier, instead of in your 40s, 50s, 60s, it's 2030s, 40s. Now the folks in my therapy group, half of them are in their 30s, and the social worker leads it describes that as a shift over the course of his career, and one that he celebrates So similarly, I didn't the information was there, but I didn't integrate it. Sometimes I describe it as the course of my training, between trained as an oncologist and and then as a as a hospital chaplain, and then pediatric palliative care, and finally, in learning to be a psychedelic guide, that the lighting slowly shifted, and then suddenly, in a more dramatic way, shifted to help me understand what had happened and what it had to do with who I was and and how I behaved in the world. Relationally, both professionally and personally, writing has been part of that, that writing has been a it's an occasion to represent and articulate not just what happened, but really what it what it means, and put it in relationship to the present. Again, both, I guess, both personally and professionally and to be you know, for me, I I'm still working on this never ending book by envy you that you you finish yours, because I'm still, still struggling to complete the last chapter in which I really understand everything and have it all figured out. And it may a, um, mature, well adjusted, emotional being, both professionally and personally, there's been a an evolving project of trying to articulate an honest, satisfying answer to it, and then, you know, in doing so put myself in relation to the parents in a way that I think, you know, echoes what Bob said, and really understand, oh, wait, I'm this is the relationship of my own suffering to this, this family suffering, or this parents suffering, and to really, like, acknowledge with real humility, there is nothing else like what our families and patients are going through. Everybody has their own worst thing. You know, I

Sarah Dabagh: 14:20

hear a lot of questions asked to applicants, asked to myself, ask the colleagues, what brought you to this field and what made you go into pediatric palliative care. And oftentimes, the person who's asking asks with an incredulous air. One thing I love that you said, Bob, is this I wrote down the sentence this goal to make the world hurt a little less. I think it's a goal everybody can sign up for, and there are many ways to do it. Not all people have to sit at the bedside of a dying and sick child in order to help make the world hurt a little less. But that's a place that both of you found yourselves, and the journey there, for both of you touched on. You know, spirituality and. And chaplaincy training, it touched on narrative and telling other people's stories. Interest in people's stories pulls a lot of people to palliative care. And this may seem like a strange question, but 15 years ago, what would you have said brought you to palliative care, and how would that answer change today?

Bob Macauley: 15:18

Yeah, that's a great question for me. 15 years ago, I would have talked about sort of a confluence of experience and skills. In addition to being a pediatrician, I'm also an Episcopal priest, and so I would say something like, it's a way to bring together the things I was trained to do, and also recognizing that sometimes our greatest strength is also our greatest weakness. And so one of the after effects of what I experienced as a child is like I am an elite dissociator. For most of my life, I had to, or at least my younger years, I had to. So that is a skill, a survival skill that once acquired, it doesn't take a whole lot to slip back into it. And so it wasn't like I wasn't emotionally connected with my patients, but in the moment, I can dissociate to beat the band. And what that means is I can get through intense situations, tuck things into a corner, and then deal with the feelings that I tucked into that corner when things have settled down. And I think that's a valuable skill in some ways to have to some degree, but taken to an extreme, it's not healthy. And so 15 years ago, I would have said it's a confluence of my training and my skill set acquired in all kinds of different ways. And now I would say that I started in a place where people did things that no one ever should do, and I found myself to my great blessing in a place where people do things I never thought human beings could do in the best possible sense. And that's where the healing comes for me. Yeah. I

Unknown: 17:04

think 15 years ago I would have, I would have said, palliative care. You're crazy. I'm never going to be a palliative care doctor. But back then, I had some awareness of a nebulous sense of, oh, I want to, I want to learn to help people. I want to learn to take care of them in ways that go beyond the at that time you're writing the chemotherapy and managing the intense complications of cancer treatment for kids. I think this speaks back to what Bob was just saying about dissociation, being drawn to intense psycho emotional situations or work where I really I could just be completely what looked like totally calm and compassionate, but also distant, reasoned and like, looking disinterested and clinical, but also connected in a way that appeared one way. But actually what was at the heart of it was just a talent for dissociation that went beyond any other academic or creative talent. It was like, the one thing I was absolutely best at, but the one thing I didn't acknowledge that I was doing, even though, like, I got the bradycardia award as an intern for being most unflappable in terrible situations. But that was because I was literally not all there. I actually was clinically, you know, I think doing a good job in those spaces and being helpful, but not in the way I think I can now. And I guess it comes back to what Bob said, but there was, you know, there's something about being really fully invested, finally, in the idea that as awful as things get, there's another side to it. You

Daniel Eison: 18:26

know, this article that Chris wrote that we interviewed you about low so many years ago on this podcast where the question was, less, why do you do this work, and more, how do you do this work? And I think I'm hearing you both say that the trauma of your past, the things that you've gone through, influence both of those answers. It's both the how and the why. And I think that's an important nuance,

Bob Macauley: 18:53

yeah, and I think that's incredibly insightful. Totally agree. I think that the how piece for me is on some level, to come to peace with the fact that a little dissociation once in a while is not the worst thing in the entire world. You know, like it gets you through difficult times taken to an extreme. It can be really unhealthy. But there's probably, there's a wonderful thing about not being tachycardic during a code like Chris won his award, and embedded provided some excellent care to kids who needed it right then and there. I think the why piece is certainly my background and my history contributes to that, and that's the one that I really think most about, which is to say that when I tell people I do pediatric palliative care, like, first of all, I don't tell many people that. I just tell them I'm pediatrician because it's just nicer for them and I don't want to ruin their day, but if they really want to know more, then I'll tell them. And they, often times, go down the road of, Oh, you're so selfless, and you're, you know, it's amazing what you sacrifice, and you know, it's lovely that, you know, it's a nice thing for someone to say to somebody else, but I'm like, that's not true, right? Like, and I don't think it should be true. I don't. Think anyone listening to this podcast who is involved in pediatric palliative care, somehow, I would hope that we don't wake up every morning and be like, This is the worst thing ever, and I'm just going to get through the day, but it's the right thing to do, because if that's the case, you probably don't have a very happy life, and arguably, you're probably not providing awesome care. But the other extreme is also really interesting for me. I never want to get to a place, and I hope I never have where I do this work only for me, like, if I'm like, I have wounds from my past, where can I go and find my own healing? Well, then I should get in therapy, and I should have some friends, right? I shouldn't go out there with parents, with really sick kids and have them meet my needs. And so I think that some there's got to be the right middle ground in there. And I don't know what the right answer is, but I think that there's danger on both extremes.

Unknown: 20:52

Yeah, I think that the how became the why for me, and once I recognized that, it freed me up to do the work in a way that gestures more towards what Bob's talking about. In fellowship, I had a, you know, one of my mentor and fellowship, not very far into the fellowship, asked, What dark need is being met in you by, by being in this work. And he asked, in health, sort of half facetiously, or in the context of, you know, if you're, you know, just looking around in a at HBM and, and if there, you know, anybody who seems a little kooky, asking, asking the question, what like the people who are who like, seem a little too interested in in death and dying. Answering that question can be part of a way to be grounded in the in the everyday, or every time you go into a patient room to ask, when I'm like, What am I here for? What's going on, and how can I really be supportive?

Sarah Dabagh: 21:38

And so in some ways, you've answered this question, but I'm going to ask it again. In what ways have you felt your practice shift or change with this realization, this full circle, as you've described it, realization, in some

Unknown: 21:52

ways it didn't change anything the technical parts of the work, even the kind of technical parts of the psycho emotional work. I don't know that I necessarily looked any different to my team or to the folks we were consulting for, but it shifted how I understood what I was doing, and it changed me as a preceptor, for sure, because suddenly I started asking in the most gentle way possible, different questions about the residents who came to rotate with us, or our fellows, or visiting fellows, that I would ask them some version of the question, tell me more about why you're here, or, you know, the residents. What are you hoping to learn while you're with us? And I would start to offer the question, you know, is it sort of choose your own adventure thing. What comes up for you when you are in these spaces with us? And would you be willing to think in between now and when we see you again, about your own experience of grief, say, or think about your own experience of loss, and maybe writing that down something, writing something down about it, maybe not just coming, come back into our shared clinical space or educational space, and we'll talk about it. I

Bob Macauley: 22:59

think, I think, Oh, actually, I know I think less, and dare to trust my heart and my sense of what the world is, which is what I was trained not to do as a child. And that took a lot of reformatting, if you will. The sentence that I most miss about the book was one that I fought really hard for, and my publisher would not back down. I had a little aside, and I said, not to go all Buddhist on you or anything like that, but it would seem to me that the height of presence is not thinking about being present. I still like that line, but he thought it was anti Buddhist. I don't think it was, but so now I'm going to slip it into a podcast so I still get to say it that was for me. As I look back, I thought to myself, I think there's a little growth there, from where I started out to where I ended up that thing. So

Daniel Eison: 23:56

as your comment is highlighting, both writing and podcasting are methods of public communication. You also both mentioned how your experiences and your processing of those experiences have had an impact on your interactions with your colleagues, with your teams, and this is something that you have both written about, and it's something you're both now podcasting about and I'm wondering if you can just reflect on that experience of talking about this in a public forum. Yeah,

Unknown: 24:28

I guess you know my I guess I can say I outed myself as a childhood sexual abuse survivor in a short perspective piece in a medical journal. And it's funny, I the piece I wrote, It was intended as a bookend for the one that we talked about here a couple years ago, which was about being at a cocktail party and being asked, How do you do this work? And it was sort of that that original piece was the answer was, I can do this work because it's a privilege to actually get to be next to it. It's an I'm grateful that I'm. Um, that the work puts me close to it, instead of being at a distance or hiding from it. So lucky me. Lucky us, anybody who's put in the way of other people's suffering. And the second piece was why I do this work. How I do this work goes back to what happened to me and everything we've been talking about, about why having to share a shared sense of reconciling suffering can be an engine for a vocation. I think some part of me, even back then, this was a couple years ago, hoped that just saying the words I was I was sexually abused by my parents when I was kid. I hoped that that would just be an occasion for clinicians, I guess, to have an example of somebody opening up a route the relationship between their own their own trauma and their vocation as clinicians. I wish that podcasts like this, or even a tendency in the world of popular medical non fiction, a place where people get to show up more as themselves and not just talk about suffering at a remove, that'll open up a different space of conversation.

Bob Macauley: 26:02

Yeah, I resonate very much with what Chris said. And for me, this was never the purpose of writing the book that I wrote, but one of the results of writing the book was tying things together into more of a coherent narrative of my own life, so that I understand that better. I also think that there is, as we are talking, less than two weeks away from publication date of the book is equally exciting and petrifying, maybe more petrifying right now than exciting, but they're kind of competing with each other right now, because before I started writing the book, I could count the number of people who knew that about me on one hand. And now I really hope more than five people buy the book. That'd be nice if I need at least two hands. And I come back oftentimes to a quote that I think about a lot by Janice Joplin, who said Freedoms just another word for nothing left to lose. For me, right now, I look at it as freedoms, just another word for nothing left to hide. So it's out there, and anyone who wants to read the book will know that, and that is a very freeing thing, because it takes work to keep secrets, and it's nice not to have to do that work. I hope people who read the book will like if they don't know about pediatric palliative care, they'll know about pediatric palliative care well what it is that we do on a daily basis, which I think is so important. And then I also hope that when they see somebody who seems like they have it all together just walking down the street or bumping into somebody, they might pause and say, I wonder what that person is carrying, and maybe that will lead to greater understanding and compassion.

Daniel Eison: 27:52

This feels like a moment for me to say to our audience, please, please read this book. It absolutely does explain what pediatric palliative care is all about, in a way that I think people in the field and people not in the field alike can appreciate and understand things more deeply. It helped me understand things more deeply about the work that we do. And I want to, just like, hand it out on the street corners to everyone to be like, This is what I do. I'm so proud of what I do. Look read this book. It does such a good job. And I don't know if this is the part in the recording where I'm supposed to give the book a plug, but like, definitely do read this book. It's really an awesome book.

Bob Macauley: 28:29

I really appreciate that, Dan and not that it would, if it does make a difference, I would note all proceeds from the book are going to charity, primarily to support our program here in Oregon, but also a portion. And this is especially relevant, especially relevant with the conversation with Chris abortion going to darkness to light, which is a fabulous organization that is working to prevent child sexual abuse.

Sarah Dabagh: 28:56

I think the thing about this episode that was strange for us is we are so used to talking about human suffering, but a very specific kind of multifaceted but situational human suffering, that encountering a new and different kind of human suffering, I was just hesitant as to how to do it right. That

Daniel Eison: 29:16

comparison struck me, as well as you and I were thoughtfully, delicately asking questions. I thought to myself, This is what we do professionally. We ask people about the worst things in their lives, and yet it still felt challenging. I wonder if it's because, like you said, it's a very different type of suffering. And also, I think there might be something different in that we were talking to colleagues, and that's not often what we do.

Sarah Dabagh: 29:46

And I think this piece I want to make sure is evident too, is that this was the journey, the self discovery, journey of two specific people happen to have a tremendous number of parallels, but is not meant. To be reflective of whether or not anyone is an excellent pediatric palliative care provider in the absence of their own personal trauma.

Daniel Eison: 30:06

Yeah, I think that's really important if we're talking about takeaways from this episode. After we recorded it, I had a conversation with someone who is thinking about going into pediatric palliative care, and I was very conscious of, first of all, not asking the question of, well, why? Why'd you choose this field like, what? What's your dark secret? And then without my asking, as this person shared their very personal experience with grief and loss and illness, I was able to say, hey, you know you're not alone in having personal historical reasons for wanting to come into this field. That's not a bad thing, because it can feel weird to say, well, I'm going into this because of something that happened to me. But actually, it turns out a lot of people do. And

Sarah Dabagh: 30:53

the take home to my take home, I think the piece I'm really carrying one feeling or idea or fragment of a thought from this conversation. I think the thing that they said pretty explicitly at the beginning, but then I held on to it as we had the rest of the conversation, was the how do you keep doing this work? There's this fulfilling idea to the fact that you are watching the best of humanity, and you are watching a reminder that there is goodness in the world, in the way that people flock to the bedside of a dying child, that that is a reminder of like, the goodness in the world that I think sometimes we need. And it's actually very fulfilling, not

Daniel Eison: 31:31

to be trite about it. But isn't there that quote from Mr. Rogers about when something bad happens, look for the helpers. And in our line of work, we get to see the helpers all the time.

Sarah Dabagh: 31:41

See the helpers. I think it's also important to say that we are not the only helpers. Yeah,

Daniel Eison: 31:45

for sure, yeah. Thanks for listening. Our theme song was written by Kevin McCloud. You can follow us on blue sky, where our username is pdal, dot bsky, dot social. You can find the notes for this episode and all the others on our website. Pedipal.org, if you'd like to submit thoughts, objections or ideas for future episodes, please reach out through the email on our site. This has been PD, pal, see you next

Sarah Dabagh: 32:11

month. The other thing, I think it's funny, just I edited this out of the highlighting, but Chris says in as we were recording, and I recognized that when it happened an exact sentence that he said in our last episode, really, yeah. It was the like, oh, pal, I don't care what's that a bunch of people in like, Jesuit robes, like, oh yeah. It was an exact to the word sentence. And I said, we can't include that because, like, our listener, if they exist, will know that Chris has a limited number of lines. Sorry,

Daniel Eison: 32:38

we can't expose him like that. He's willing to talk about his horrible childhood trauma. Childhood Trauma, but if show that he has, Like, a few one liners and He repeats You