Sarah Dabagh: 0:02

Hi, this is Sarah,

Daniel Eison: 0:03

and this is Dan.

Sarah Dabagh: 0:04

And we'd like to welcome you to PediPal.

Daniel Eison: 0:07

A no-longer-new podcast on all things pediatric palliative care.

Sarah Dabagh: 0:12

The opinions of this podcast are ours alone and do not represent our respective institutions, and they do not constitute medical advice.

Daniel Eison: 0:19

If you feel awkward at cocktail parties, keep listening. And don't worry, we do, too. Let's talk about it.

Sarah Dabagh: 0:26

I feel like usually our episodes don't really need an introduction, we say let's just jump into it here, our guests. Here's a very straightforward topic. This one needs an introduction.

Daniel Eison: 0:35

It does. And I think partly because we start out in one place, and the conversation really goes in a somewhat unexpected direction. Now, I almost don't want to say anything else. And just leave it up to our listeners to find out where that unexpected direction is.

Sarah Dabagh: 0:49

But we should own up to the origin of this episode.

Daniel Eison: 0:53

Okay, that's fair.

Sarah Dabagh: 0:54

This episode started with Jared, who was our first guest, and now our first repeat guest, reaching out to us with an idea he had been working on. And that idea reminded us of an article I had read from Chris Adrian, about five or six years ago, and where the intersection of those two ideas went was a little bit unexpected, but very, very interesting. The general idea is how do you navigate the elevator pitch outside of the medical community...

Daniel Eison: 1:23

...and the all-too-common response, "Oh, that's so sad..."

Sarah Dabagh: 1:23

...when your job is pediatric palliative care.

Alison Silverstein: 1:29

Hello, my name is Alison Silverstein, and I'm a pediatric Hospice and Palliative Medicine fellow at the University of Tennessee Health Science Center in Memphis, Tennessee.

Sarah Dabagh: 1:38

Allison, thank you so much for coming on. One of the reasons we wanted to have you on in particular is because, unlike our other guests, you are newer to this concept of "Oh, that's so sad." And you're newer to this concept of the cocktail party. And I actually wonder, do you remember the first time you heard about pediatric palliative care? Do you remember if you had that, "oh, that's so sad" reaction?

Alison Silverstein: 2:01

So I think that I was a bit of a strange child. And I volunteered throughout high school at a camp for children with cancer and other blood-related diseases. And I don't really remember the first time anyone talked to me about pediatric palliative care. I feel like when I think back throughout my childhood, and like entryway into medicine, that I was always doing it and thinking about it without realizing that was the name for it. As opposed to people who learn first that pediatric palliative care is maybe the hated term, "the death team," or whatever it may be, like, I thought of all of these things. And then someone told me like,"Oh, Allison, all those things that you're thinking about and wondering about. That's pediatric palliative care." And so I think for me, it was a moment of like, "Oh, that's awesome." Like, "I love that there's doctors who do that. Can I be one of them? Like, that's just so cool." And so I don't think I ever had the "that's so sad," visceral reaction.

Daniel Eison: 3:07

How has that borne out since you've gotten into the field? Has your perspective changed since you've now started training?

Alison Silverstein: 3:15

I think that there is certainly a heaviness and a sadness that is intertwined within pediatric palliative care, and hospice. But I love what I do. I have never been happier getting to go to work every day. And my work provides me with so much meaning and joy and value. I just feel incredibly privileged to like, be a new part of the Pediatric Palliative Care family.

Sarah Dabagh: 3:43

Talking to people both within that family and outside that family, both before you started your fellowship and now during, do you feel like your answer to "that's so sad" has changed?

Alison Silverstein: 3:54

Absolutely. It's still evolving. I think that I am trying to figure out the best way to answer that question without ostracizing whoever I'm speaking with. I said something to my uncle at one point, and he kind of paused and was like, "Oh, my goodness, have I ever made you feel bad or like a monster for wanting to do what you do?" Like he had this like moment where he was checking himself. And I don't ever want to make people feel like that with my answer. I think explaining to family is really challenging because my mom also gets a lot of questions herself. And then she feels like, "How do I explain this?" And so that has been a pretty common topic of conversation. I think my answer generally, is just that I get to work with children and their families during some really hard and challenging times and hard and challenging medical diagnoses to kind of support them however I can, no matter where their journey leads.

Daniel Eison: 4:55

I want to ask more about the conversation you had with your uncle, if you don't mind, because I'm really interested in the words you used, or that he used, I guess, which was I don't want you to feel like we think of you as a monster for doing this. Because I actually think that's speaking something that is often thought but not often said, that there is a certain monstrousness to what we do. Would you mind expanding on that?

Alison Silverstein: 5:18

Something that I have wondered about is like, am I a good person for being able to do this work? Like, should it not leave me bedridden and just emotionally destroyed? And the fact that I find that the work that we're able to do provides joy and meaning to myself, is that like, kind of sadistic? Am I-- am I a monster for that even? And I think that trying to reframe things is really important. So children are sick, no matter where I'm at in life, if I wasn't a doctor, if I was a doctor, there would be kids who would be very sick. And there would be families going through immensely challenging times. That is not something I can control. But I can control how I influence them or walk with them on their journey. And if I can bring a little bit of joy, if I can bring a smile, if I can alleviate a little bit of pain, if I can bring people together, if I can help decrease confusion or stress, that is a success. And that is amazing, and humbling and beautiful. And that is what brings me joy. It's not joyous that children are sad. And I am not a monster, or I am not an awful person for wanting to bring joy. And so the work itself is meaningful and uplifting. The situations, quite frankly, suck. But that is not something that I can control or anyone can control. And so how I modulate or influence is, to me, the biggest part to focus on.

Daniel Eison: 7:07

I will just say, that's beautiful. And oh my god, me too. If you talk to my therapist, you would know like... I talk to my therapist a lot about feeling like a horrible person for finding satisfaction in this horrible, horrible field we're in. And yes, you're not alone in that.

Sarah Dabagh: 7:23

And I think there's another question that actually makes me wonder that, that's not "Oh, that's so sad." And maybe it's not a question, maybe it's a statement, but I feel like hear a lot, "I could never do what you do." And that's hard to respond to as well.

Alison Silverstein: 7:36

Yes. And I typically respond, "That's awesome, because I could also never do what you do." And that is the beauty of medicine. And that is the beauty of this world, is that there are people who want to do all of the different things. I personally would not find meaning joy, satisfaction from being an ophthalmologist, but we need ophthalmologists. And so it's great that someone else wants to do that. Sure, maybe it takes a certain kind of person to do pediatric palliative care. But it also takes a certain kind of person to be an ENT, or to be an internal medicine doctor. And I think that's the beauty of medicine. And you can extrapolate that out forever. And so that is a statement that certainly didn't sit well at first, because I don't like all of the attention being on me. Iit kind of to me goes with the"you must be so special" statement that we all get. And I think that we are all special and uniquely apt to do whatever it is we do. We're no different.

Sarah Dabagh: 8:43

I have this sort of funny tension with my husband, who is a pediatric oncologist, because I could never do what he does. And he could never do what I do. But the Venn diagram of those fields is so intertwined and connected.

Alison Silverstein: 8:56

I actually thought I wanted to do pediatric oncology for the better part of 20 years. And there was something that, like, didn't quite sit well with me and this gut feeling that that wasn't right. I had one friend who, when I told her I was pivoting from oncology to palliative care, she was like, "Well, duh, that's obviously what you were gonna do all along." I was like,"Okay, thank you for telling me that three years ago, it might have been helpful." And then other colleagues who were like,"But wait a minute, don't you want to cure people? Don't you want to really help them? Like, what are you doing in palliative medicine?" There's definitely misconceptions that still exist. And I'm hopeful that with a growing generation and generations of people who are choosing Hospice and Palliative Medicine, that our workforce will continue to expand our messages will continue to expand.

Sarah Dabagh: 9:47

So it feels like instead of "That's so sad," you got a (Dan, don't cringe),"That's so rad." Or you got like you got a positive response. And I'm wondering actually, how often you feel like you didn't actually get a positive response.

Alison Silverstein: 10:01

I think from those who I am closest with, and who know me, and know my heart and my passions, that I feel overwhelming amounts of support. And the "that's so rad" response. Because they just see how how it works.

Daniel Eison: 10:23

When someone says,"Wow, you do that? You must be such a special kind of person," how do you reply?

Alison Silverstein: 10:28

I really hate that "you must be really special" response. And I don't do this work thinking that I'm special, or the people around me are more special than someone who chose something else. You guys clearly can tell that I'm kind of floundering on this one, because it never sits well with me. And I'm still in training, and I'm still working on it. So I think that we are all special for different reasons. And, like, that is great. So after the awkward silence after my feeling incredibly uncomfortable, I probably change the subject.

Sarah Dabagh: 11:01

Can I offer you the line that's become my favorite?

Alison Silverstein: 11:04

Please.

Sarah Dabagh: 11:05

I'm not, but my patients really are.

Alison Silverstein: 11:07

Wow!

Daniel Eison: 11:09

That's so good.

Alison Silverstein: 11:10

That is so good!

Sarah Dabagh: 11:12

What about the question, "How do you do this?" Because that opens up that concept from earlier, of "Are you sure you're not a psychopath?"

Alison Silverstein: 11:21

To me, that is like such an easy question, because for me, it was "how could I not do this?" I probably launch into some stories of ways that it matters. I truly believe that our work matters. I say it again and again, but I'm privileged and humbled to be able to do it. And I think that I'm here because I believe that and I live that every day. And when a child dies or something bad happens, understanding how our team's involvement made something bad a little less bad, or how we made something go just a touch smoother, or how a nurse says, "Thank you so much for being here and helping guide me through XYZ." It's so obvious to me how and why I do it. And so that one, I can just talk someone's ear off with a bajillion stories, and then they probably are feeling awkward and walk away.

Jared Rubenstein: 12:23

Hello, my name is Jared Rubenstein. I'm a pediatric palliative care doctor at Texas Children's Hospital and the Baylor College of Medicine.

Sarah Dabagh: 12:30

So much like the last time we had you on, I'm tempted to open with an excerpt from one of your YouTube videos. And I'm wondering if you can tell us a little bit about where this latest one came from, and what your inspiration was?

Jared Rubenstein: 12:42

Sure, the inspiration was Allison Silverstein, who I believe you're also interviewing for this episode, was asked to write an op ed at the end of her residency. And she wanted to write a palliative care one. And she reached out to me to say,"Hey, should we write a palliative care op ed together?" And we were brainstorming about what topic we thought would be good for sort of the lay public and came up with this idea of the cocktail party question and how, you know, as a society, especially in the last couple of years, there hopefully would have been more comfort and willingness to engage in these hard conversations and talk about a field like ours. And so we wrote it up as an op ed that we were really proud of, and nobody wanted it. And so we submitted it to a few different papers, tried rewriting it as a journal article as well. And nobody wanted that either. And we said, how about we just make a video out of it? And that led to the video

Sarah Dabagh: 13:31

And that led to the podcast.

Jared Rubenstein: 13:32

Yes.

Daniel Eison: 13:33

That's really interesting, actually, and I think maybe speaks to some of the hesitancy or... Well, I don't know, I'm curious, maybe you can speculate about why do you think no one was interested in that particular piece?

Jared Rubenstein: 13:45

So I mean, part of it may be it just wasn't great. Like, I'll-- I'll own that, as one of the authors of it, maybe it-- maybe it wasn't a good enough piece. I think part of it is it felt like it was a piece without a home because while it was designed to be for the lay public, these are conversations that the lay public is not really interested in having in a lot of ways.

Sarah Dabagh: 14:03

It almost feels like a perfect simile for being at a cocktail party telling someone you do pediatric palliative care, and then having them pause and go, "What do I do? What do I say?"

Jared Rubenstein: 14:13

Uh huh. What ended up being the take home point of the video was the sense that Allison and had from talking about it, that our hope and why all these different stock responses people have-- whether it's "that's so sad," or"I could never do that--" they're all conversation-enders. And, like, our hope for any conversation is to have, especially if it's something that we feel passionate about, or that's important, to be a conversation starter. And I think that was ultimately our plea at the end of the video is, you know, to have-- let's have conversations about this. Let's open doors. And if something's hard to look in the face, maybe keep looking for a minute and seeing if there's more there.

Daniel Eison: 14:45

When you're talking to lay people about what you do, have you found that there are responses that do open the door more versus other ones that cause people to really close off?

Jared Rubenstein: 14:55

The biggest thing I've noticed, so like in the before times when there were cocktail parties, I think for me, it's been an evolution over my career. Like when I was a resident planning to go into palliative care and a fellow just starting in palliative care, I wanted to make friends and be less socially awkward and meet people and not make people uncomfortable in conversation. And so I think it was much more along the lines of "Oh, I'm a pediatrician," and only if there was more digging, and we're asking on the part of the other participant in the conversation, I'd get into more, because my goal was really to not make people uncomfortable, and to have conversations continue about other stuff. And now where I am in my career, and in my life and where the field is, and as someone who's become sort of an evangelist, for lack of a better term about, we need to have these conversations and let's talk about palliative care, I'm okay, if it makes people a little bit uncomfortable. Because I think that these are conversations we should have. And part of it, I think the fear of making people uncomfortable, too, comes back to that naming piece. And you know, we know that the majority of people, study after study shows, just don't know what palliative care is. And so I think feeling some confidence so that you can name it, and then people aren't going to be like,"Oh, that's awful." It'll be, "I don't know what that is." And then you can sort of have a bigger conversation if you're willing to. And I think depending on the setting, I love doing that. And I love having the ability to reframe and help people realize the sad stuff is out there. And I have a job where I get to be with people in it and try to make it better. And I think there's there's nothing sad about that.

Sarah Dabagh: 16:18

Do you have a favorite response you've gotten from someone when you've told them that you do pediatric palliative care?

Jared Rubenstein: 16:25

I can't think of a specific favorite one. It's more just the genuine curiosity and the willingness to have... I mean, that happens so rarely where it becomes more of a conversation. Like that's my favorite response is just, "I don't know what that is. That's, that's interesting. I'd like to hear more about it."

Sarah Dabagh: 16:39

So your favorite response is a palliative care response, "Tell me more."

Jared Rubenstein: 16:43

Absolutely. The stock unfavorite responses, I think are the "Oh, that's so sad," which is a conversation-ender, the, "I could never do that," which is a conversation-ender, and the one I personally grapple with is like, "You must be so special." And it's often said by someone who I think probably couldn do it if they chose and have chosen to pursue other things with their life. And that's fine. And everyone should be able to pursue what gives them joy and gives them satisfaction. But I think for me, I struggle the most with "You must be so special, I could never do that." Because one, I think more people probably could do it, I wish more people would do it. And I also don't feel like I'm very special. Like I've started when I give talks about this to med students and residents saying, you know, "Everyone thinks if you go into palliative care, you must be a naturally good communicator, and a really good person. And I'm here to tell you, I was hugely socially awkward growing up, and I'm just a very average person. And so anyone, like if you get the right training, this is a field anyone can do if you're interested."

Daniel Eison: 17:42

One of the things that came up with Allison, and is also coming up again now is the idea that it's a skill set. And it's a learnable one, and it's not just some intangible beauty that someone has in their soul that allows them to do palliative care. It's like no, like, I had training, I did VitalTalks, I did a fellowship, you know, whatever it is. When people believe that it is some special quality, it stops them from going into the field, potentially; it stops them from seeing the full spectrum or the full breadth of value that the field has. Because if it's just some expression of the specialness of a person, well then somehow in a way, that's different than and potentially lesser than, what any other subspecialist does. It's not a concrete set of skills that are used in a technical way to achieve certain outcomes in a medical setting, which we all know it to be.

Jared Rubenstein: 18:36

Absolutely, yeah, I mean, I think I've had before the, you come out of a room and you update the medical team about a conversation you've had with the family and new information that's come to light or plans that have been made or goals that have been elicited. And somebody, usually someone more junior will say, "Oh, what's your secret? How do you do that magic in there?" And I was like, "I don't know, fellowship training and some years of experience?" In a way that no one would ever go to a surgeon after they come out of the OR and be like, "Can you teach me some of that magic, how you got the appendix out?" Like it would be such a ludicrous question. But for reasons that I think are sort of clear, but a little unclear. It doesn't feel weird for people to ask that to us.

Sarah Dabagh: 19:10

You're sort of getting back to that idea of conversations as the palliative care procedure, which I feel like we've talked about a couple of times with a couple of our guests, even though I don't think it's ever made it to the air. And it reminds me of the idea that everybody feels like they are a conversationalist, but not necessarily a procedural conversationalist. I want to say it's like hand washing, where everybody washes their hands, but some people scrub. And if you were to go to someone who's washing their hands and give them tips and feedback, they would go, "But I do this every day. This isn't a procedure." But then you make it one and then you make it better.

Jared Rubenstein: 19:49

Yeah, no, I love that analogy. I mean, I think it also leads to some of the weirdness that the thing we're a procedural specialist in is something everyone else does as part of their job usually as an afterthought. And often we see other people doing this part of their job. And I don't think any other fields have that. Like you don't have plastic surgeons walking through the ER inspecting all the suturing. And you don't have a cardiologist sitting over my shoulder in clinic when I'm listening and trying to hear a kid's murmur and evaluating how well or not I'm doing. Some of the nicest moments I have, and when I'm most flattered, is after a family meeting where a doctor from another team will take me aside and say, "Hey, do you have any thoughts about how I communicated with that family in there?" Like, those are some of my favorite moments in medicine, where I feel like it's an understanding that what we have is a specialty that can be taught and learned and practiced, and sort of a mutual respect for like each other's fields.

Daniel Eison: 20:37

And yet, despite our expertise, and training in conversations, the whole point of this conversation that we're having now on this episode, and your op ed, is that there's this conversation that we struggle with so much. And all of us, for all our training, can't seem to figure out how to have this conversation with people about what it is we actually do.

Jared Rubenstein: 20:57

Yeah, absolutely. And I think it's taking the procedure out of the operating room for lack of a better term. And it's in the wild. The rules are different, and the... I mean, it's probably a totally different skill set. Like I think there are socialites that would be much more apt to navigate some of these conversations than we would.

Daniel Eison: 21:13

I recognize that too, as a fellow socially awkward person. I remember talking to some of my colleagues about this, actually, when I was in residency about how socially awkward people who are drawn to medicine often find the structure of the medical interview, to be kind of liberating, because it gives you something to say, and it gives you a structure for how to converse, whereas when you're at a cocktail party, you don't have dot phrases, you don't have a structure.

Sarah Dabagh: 21:39

You go into palliative care, because you value and feel comfortable in the silence. And the cocktail party is not somewhere or sitting and being comfortable in silence works well.

Jared Rubenstein: 21:48

Yeah. And it's something we ask our fellows and students and residents to think about, sort of from the beginning of their time with us is, you know, having your three different palliative care pitches. There's like how you explain palliative care to a patient and family, which is like the initial consult pitch. There's how you explain palliative care to another medical team, where maybe you're consulted by a colleague, and then you go see the patient. Now it's a different colleague on service, and you walk out of the room and they look at you like, why are you coming out of my patient's room? We're not there yet. It's too soon. Did you just go in and euthanize them? And like how you, in just the moment, you have that conversation about, here's what we actually do, and here's specifically what we did for this patient just now. And then there's the cocktail party one.

Daniel Eison: 22:28

Do you actually ask your fellows to have a cocktail party answer?

Jared Rubenstein: 22:31

Oh, yeah, absolutely.

Daniel Eison: 22:32

Awesome. I do have one more question. Jared, I've heard that you do pediatric palliative care. You must be so special to do that. How do you do what you do?

Jared Rubenstein: 22:43

You know, I'm flattered. Thank you for asking and saying that. But I'm actually-- I'm just a regular person. I put my white coat on one arm at a time like anyone else. The hard stuff, we just support people and support each other and supporting other people. And the other part is that a lot of it the days aren't that sad. It's wonderful. We get to be with people who are going through something hard, but really work to make their life better and do what we can to help people live their best life in the setting of whatever their illness is. And I think that's totally satisfying and empowering.

Chris Adrian: 23:18

Hello, I'm Chris Adrian. I'm a pediatric palliative care provider in Los Angeles.

Sarah Dabagh: 23:24

Chris, we invited you on this episode, because both of us are huge fans of the article that you wrote about the cocktail party conversation sort of about your position as a Heme/Onc doctor. But I'm wondering if you can tell us a little bit about the inspiration for writing that originally,

Chris Adrian: 23:41

My fellowship research project was a project where I just wandered around kind of like the-- no one will remember what this was, but there was this commercial once upon a time for Tootsie Pops, where this little kid went around asking different animals, how many licks it took to get to the center of a Tootsie Pop, and nobody could ever really tell him. My research project was to go around my different attendings and ask how did you learn, and how do you teach, the psychosocial aspects, or psycho-emotional-spiritual aspects of pediatric oncology? How'd you learn those and how do you teach them? That was the project. So that was always on my mind anyway. And then when that opportunity came when somebody reached out to ask me to write, that's kind of what I knew about in the moment. I wasn't working clinically, so I didn't have any particular cases or vignettes that this question had been on my mind for a while.

Daniel Eison: 24:29

You wrote this piece while you were not clinically practicing, and in some way, were closer to being non-medical, and it is about your interactions with people who are not in medicine. How do you feel like that influenced your ideas in that piece? And do you feel like your ideas have changed since getting back to being a clinician?

Chris Adrian: 24:49

Yeah, they have. I think, in part because I've evolved or mutated-- mutated might be a better word-- as a clinician, because I became a palliative care provider. I wasn't a palliative care provider when I wrote that essay, didn't know what palliative care was back then. And maybe even more importantly, I thought it was a bunch of people who dressed like 18th-century Jesuit missionaries, and just talked about death all the time. As I understood better what it was, I would have written a different essay three or four or five years later, than I did back then as a civilian, in some ways, I guess I could say that. I mean, the cocktail party is actually, you know, was real. I was single at the time, I was hoping something might come out of the interaction at the cocktail party! I wanted him to like me, I can say it that way. And it's funny to speak to somebody and try to, you know, make it not so bad for them or make it hurt less when you're telling them because ultimately, what I what I think I figured out or what what writing the essay helped me understand, that you're not protecting them from anything. They're-- people protect themselves from the idea of that kind of enormousness or enormity of suffering, the suffering of children, other people's suffering. I shouldn't have to make excuses for that when meeting strangers. In that essay, you know, I say something like, "It's your loss, not to get to do this kind of work, because it's a privilege." And I wouldn't in general say that to civilians now, it's a little bit harsh. And I think I have learned to protect people who don't know this stuff up close and personal, I don't want to be violent in my interactions with them. And there's the other thing that I will confess to you that I didn't know, really, back then, because I can say, gosh, that was almost that was what, seven or ten or something years ago now that I wrote that little piece, is that being around other people's suffering in that way, especially it's suffering of blameless parents, completely innocent children, is an opportunity for me to be with my own suffering. And that most of what was hard for me, at least, about tolerating other people's suffering was not coming to a reckoning with my own, or being dishonest with myself about-- about things in my own life that I hadn't really quite attended to. It was easier for me, as a healthcare provider, and as somebody in a helping profession. This is true as a when I worked as a chaplain, it's much easier to go pay attention to somebody else's pain than to really be present for your own. When you go into a room or when you start to deal with or negotiate with death as a daily part of your professional practice, your own experience of death gets-- you have to reconcile with it. It's going to get triggered. Regardless, I think there is something present for me for sure, around my own childhood, that when bad things happen to children, some part of me was upset about that. And I needed to be in conversation with it and reconcile with it in order to be fully present for the parents and children I was taking care of, in order to be fully to be authentically present with them and not be distracted by the part of my own experience that was activated and alarmed.

Sarah Dabagh: 27:40

You talked a little bit about the hesitance for worry of causing pain, and then working through that pain with someone, explaining and ending up somewhere on the other end that is in some way better, be it for information shared, lessons learned, different sort of approaches to the world. And I think you've managed to both describe palliative care and therapy.

Chris Adrian: 28:05

Feel like we don't want to call it therapy or we don't want to acknowledge it as therapy. And it isn't. In an important way it isn't therapy, I think it isn't therapy in the sense that you're not encroaching on the territory of an actual trained therapist who needed all the years of their training to get to where they are to be helpful and not dangerous to their patients. But there is some kind of Boolean overlap. There's something about the notion of presence that also is in conversation with your training as a clinician, whether you're a nurse, whether you're a doctor, whether you're a social worker, Child Life person, anybody like the whole kit and caboodle of our interdisciplinary team, there's something about that palliative presence, I think, that is therapeutic, but it isn't therapy. And that's mysterious to me. Like you know, it's not a matter of, oh, you need to go suffer a lot in order to do this work. I don't think that's true. It all depends on how far you've been able to go yourself and then being able to make a space between what you've been through and experienced and reconciled with and what the patient or family is being challenged to do. Because I feel like it's the first rule of Fight Club is don't talk about Fight Club. First rule of palliative care-- pediatric palliative care, at least-- is don't talk about your experience, because it doesn't matter. What matters is how you show up out of your own experience in relationship with the patient or family.

Daniel Eison: 29:14

It's reminding me of that Alexander Hemon piece,"The Aquarium." But yeah, there is a space between the suffering that we witness and the suffering in ourselves. They run parallel to each other, or they talk to each other somehow. And maybe that's part of what is so difficult, or what is so confronting about the cocktail party question. It's bringing that into a space where that wasn't before.

Chris Adrian: 29:39

Yeah, I mean, talk about trouble at a cocktail party! Palliative providers, ICU doctors, child abuse specialists, we have it a lot easier than the actual parents who have to show up at a cocktail party and say-- and have to answer the question,"How many children do you have?" And then they have to make this assessment around, well, who is this person? What can I tell them? Do I can take care of them? Do they have children? If I talk about my child, is it going to put them in a place where they worry for their own children? I mean, we're just bystanders in a way, though, of course, we're sacred bystanders, in a way, I hope. Like everybody finds their way in to authentically connect with people as a provider in these spaces. But yeah, I mean, I hear that from parents all the time, not just that they have trouble at cocktail parties, but there's something about their suffering that people become allergic to. One of the first things I got assigned to read when I was a divinity student was a book of essays by a radical feminist German theologian from named Dorothea Zola, who had this anecdote-- which I never quite still have gotten to, like, do the chicken research to see if that's actually true or not-- but it was certainly a compelling story. And I took it up as if it were true. I think it probably is. She has this anecdote about like, how chickens react to sick or suffering chickens, other chickens. And so they peck them to death, or they keep pecking them, peck at them until they leave the flock, and nobody has to look at them or be around them. And Dr. Zola's argument was, you know, people do that too. And we think that suffering brings out the best in the bystander, but it often brings out the worst in us.

Sarah Dabagh: 31:04

Unfortunately, that chicken fact is true.

Chris Adrian: 31:07

Oh, no. I think some part of me secretly hoped chickens are nicer than that.

Sarah Dabagh: 31:12

But I also think about the cocktail party is that question is asked, like, "How are you doing?" And if you ask someone, "how are you doing," and they go "Awful, terrible, no, good," you also don't know what to do. Because that's not the social interaction you think you stepped into. You meant to do some sort of platitude and move on and have a pleasant time. And the sort of that unexpected nature is I think, the thing that's jarring because I think when you answer the question, not at a cocktail party, the feeling and the conversation is different.

Chris Adrian: 31:45

And I don't know if you all have had this, but there's also there's another version of this within palliative care, where an adult provider will say-- this happened to me all the time in fellowship-- they would say,"Oh, I'm so glad. Thank god, you do what you do. I could never do that. Like the thought of being with children. That's just too hard." I think there was this other version of that, that was"Oh, thank God, you know, you do you, honey, I don't know how you do it. But go right ahead." As if there was something like gross or toxic about it. Ultimately, I would save this special reply-- I feel some mild regret about saying this now, but I would say something like,"Yeah, well, you know, I don't think I could do adults either. Because you know, the thing about kids is no child dies alone. Honey. And that special pain of well, you can live you can raise children, you can try your damnedest as a human being, and nobody will come to you on your deathbed, and it is up to the nurse on your shift to go in there and check in with you as you're dying and maybe provide a little human connection. You know what, I don't think I could do that. If we're comparing pain in some weird contest kind of way, you win. Because I will take the extraordinary love that shows up in the room around a dying child. That sustains me even, as it's hard. I don't know if I could do it. I don't know if I would have the strength to show up and be the only person who cared enough to hold somebody's hand after a lifetime on this earth."

Sarah Dabagh: 33:10

That is the ultimate cocktail party image, is you standing there, martini is hand, being like, "Well you're gonna die alone." So here's your response.

Chris Adrian: 33:22

Anyway, to any of those people who are listening, I'm sorry, said that to you. My own fear of dying alone was probably speaking more than anything else.

Daniel Eison: 33:35

As I have been revisiting these interviews, editing them and seeing what the story is that everyone's telling, and actually seeing how the story flows from Allison to Jared to Chris, it's had an unexpected emotional impact on me. I have felt a renewed enthusiasm for doing pediatric palliative care. And obviously, I have been enthusiastic about it, but it's actually not been something I've been practicing. And I'm about to start practicing it again. And talking in a very real and often raw way about why we do what we do has been exciting and revivifying. Like, I feel like more excited. I feel like when I was starting my fellowship, and I was like yes, okay, I'm gonna do this. No, you know what? I really-- I feel a little bit more like when I was at the end of my fellowship. And I was like, I am a pediatric palliative care doctor. I love doing this work. I know why I'm doing it. And I'm excited to do it.

Sarah Dabagh: 34:34

I think that's sort of the funny thing about this episode, because it's centered around an op ed that nobody wanted. But as we're going through this and as we're making this, this feels like the episode that we desperately want, and that I think a lot of our listeners desperately want and I don't know what that says about us as a field, what that says about rest of sort of the medical community. But that's been the most interesting about this. I think the journey our guests go on, as we were doing these interviews, I wondered where I am on that journey. There are some points in which I've sort of settled into Allison's shoes. There's some points in which I settled into Chris's shoes. I now almost feel that when I introduce myself as a pediatrician, as I did to my new neighbors this weekend, that somehow that's now wrong, where it didn't feel wrong before we started this. And I think the part that now feels wrong is what Chris talked about a little bit, trying to protect other people from pain and myself from awkwardness is not necessarily the correct or right thing to do.

Daniel Eison: 35:32

Yeah, if I just say I'm a pediatrician, I'm privileging my own comfort over another person's right to the truth. In a way it almost feels like a kind of ethical obligation, in some sense. And maybe I'm getting a little too lofty with this. But like, we do owe people the truth. If we went into a room to break bad news, and tried to cushion the blow, soften it, and be like, well, it's not so bad... We kind of owe it to people to be like, no, this is what we do. This is what the world is like, This is who I am in the world. And yeah, it sucks at times. Yeah, it's hard at times, but like, it is what it is.

Sarah Dabagh: 36:09

I think one thing we didn't talk about that I worry about is the, "Oh, you must be a saint." We never really touched on that sentence. But introducing myself to my neighbor as a pediatrician this weekend, I almost didn't want to invoke "you must be a saint," because when I don't take my garbage out on time, I want them to know that it is in character, right? Like we're not saying... like everyone says, we're not special. We're just drawn to a work, like other people are drawn to their work.

Daniel Eison: 36:39

In that beatification, in that involuntary sainthood that gets thrust upon you, there's a certain discomfort because, yeah, sometimes you're late with the garbage. And sometimes you let your kid have six hours of screen time a day, and sometimes... just hypothetically, not that I do that, but um... But yeah, you know, it's like, I'm a normal person. Last night, I was on call with one of the oncology fellows who spontaneously, without me directing the conversation this way, started to talk about the cocktail party question. In their case, it was more the, like, first date question. And they said, what they've come up with over the years is the "three saints and you're out" rule, where if the first time someone's reaction is, "Oh, you're such a saint," they're like, okay, that's nice. I'm gratified, let's move on; if it happens a second time, that's a red flag; and it happens a third time, they're like, that's it, we're done. Like, you can't get past this. I, of course, was like, "Boy, do I have a podcast for you!" And I actually-- I actually emailed them the article, "The Question." I was like, you've got to read this, as a current pediatric oncology fellow, like, this is exactly what you're talking about.

Sarah Dabagh: 37:49

And for our listeners, we will put the articles and the videos mentioned in this podcast in our show notes, highly recommend everything in there. Thanks for listening. Our theme song is provided by Kevin McLeod. You can follow us on Twitter where our username is@pedipal. You can find the notes for this podcast and all of our episodes on pedipal.org. If you'd like to submit thoughts, objections or ideas for future episodes, please reach out via email on our website. This has been PediPal, we'll see you next month.

Daniel Eison: 38:21

I'm getting this down right? Like this is-- this is pretty smooth for-- I've said this a lot of times now, so...

Sarah Dabagh: 38:25

You are a human dot phrase.

Daniel Eison: 38:29

That is the most backhanded compliment I've ever received.

Jared Rubenstein: 38:34

Aren't we all human dot phrases in one way or another?