PediPal

Episode 1: Water Support Team

February 21, 2021 PediPal Season 1 Episode 1
Episode 1: Water Support Team
PediPal
More Info
PediPal
Episode 1: Water Support Team
Feb 21, 2021 Season 1 Episode 1
PediPal

How do we name our pediatric palliative care teams? Is the word "palliative" just a liability? Why does Justin Baker regularly cosplay as a marsupial?

In this inaugural episode of Pedipal, Dan and Sarah interview colleagues from around the US about the names of their teams and how they introduce themselves to families: Dr. Jared Rubenstein (Texas Children's "PACT," @DrJRubenstein), Dr. Bob Macauley (OHSU's "Bridges"), Dr. Tricia Keefer (Michigan's "Stepping Stones," @KeeferMD), and Dr. Justin Baker (St. Jude's "QoLA," @justinnbaker) weigh in on these questions and more. Their answers may surprise, vindicate, or infuriate you, but we can all agree on one thing: We're the fire department, not the fire. Right?


Links to things we mentioned in the show:



Theme music: "Sneaky Adventure," by Kevin MacLeod (2009)

Show Notes Transcript Chapter Markers

How do we name our pediatric palliative care teams? Is the word "palliative" just a liability? Why does Justin Baker regularly cosplay as a marsupial?

In this inaugural episode of Pedipal, Dan and Sarah interview colleagues from around the US about the names of their teams and how they introduce themselves to families: Dr. Jared Rubenstein (Texas Children's "PACT," @DrJRubenstein), Dr. Bob Macauley (OHSU's "Bridges"), Dr. Tricia Keefer (Michigan's "Stepping Stones," @KeeferMD), and Dr. Justin Baker (St. Jude's "QoLA," @justinnbaker) weigh in on these questions and more. Their answers may surprise, vindicate, or infuriate you, but we can all agree on one thing: We're the fire department, not the fire. Right?


Links to things we mentioned in the show:



Theme music: "Sneaky Adventure," by Kevin MacLeod (2009)

Daniel Eison:

This is Dan

Sarah Dabagh:

and this is Sarah.

Daniel Eison:

And we'd like to welcome you to PediPal

Sarah Dabagh:

a new podcast about all things pediatric palliative care.

Daniel Eison:

The views expressed in this podcast are ours alone and do not represent our respective employers or institutions. T hey do not constitute medical advice.

Sarah Dabagh:

If you're having a medical emergency, please close this podcast and call 911.

Daniel Eison:

Welcome to our first episode.

Sarah Dabagh:

We'd like to take a moment to mention that we are not associated with Jerry pal. And unfortunately, or fortunately, there will be no singing.

Daniel Eison:

In this particular episode, we thought we'd focus on the naming of pediatric palliative care teams. We'd like to start with our favorite one, the water support team:

YouTube video:

I think you could be really helpful, but I think the family might be worried something is wrong if the fire department shows up at their house. But something is wrong. Their house is on fire. Do you think there's any way you could talk to them but not use the word fire?

Daniel Eison:

That's a clip from the animated video "Palliative Care PSA - We are the fire department, not the fire." You can find the link in our show notes on pedipal.org.

Sarah Dabagh:

Our first guest is Jared Rubenstein from Texas Children's. Jared, I wonder if you could tell us a little bit about both the thought process and then the sitting down and making of that video because it's such a classic.

Jared Rubenstein:

The origin of the idea, I think is just the feeling that probably all of us have at some point that before we can even start doing the work of palliative care. There's all these doors we have to go through of getting permission to talk to somebody of sending the right messaging, being asked to talk about this, but maybe don't talk about this or being told I'm not sure the family's quite ready to meet you. And one day I was just coming back from seeing patients and started to think about that analogy that it feels like it's a fire department coming to somebody's house on fire but being told not to go in for fear of sending the wrong message.

Sarah Dabagh:

There's an unusual amount of power that people attribute to us like if you talk about x, you're going to convince the family or you're going to really talk them into something that they don't want.

Jared Rubenstein:

The name changes and the asks for name changes, I think are very much clinician driven. One of the nice articles that sort of put it in the literature and showed that was Dena Levine and Justin Baker's article from a couple years ago where they interviewed a bunch of kids and parents as dyads who were being introduced to palliative care and asked them if they'd heard of palliative care before yes or no and I think found that most of them hadn't. They told them a little bit about palliative care and said also palliative care teams take care of children that are dying, how about now and found that even more so people still had positive connotations about it. And so for me, I thought that was just such a nice sort of myth debunking article to put into the literature what I think a lot of us have sort of suspected for a while like I always joke when when people ask, you know, how should we introduce your team, there's a lot of good ways to do it. But definitely one way please don't do it is say "Don't be scared, but I'm calling palliative care," because everyone knows if you tell someone not to be scared of something it for sure makes them scared of it. For when I meet patients or families who have had experience, whether it's been from a parent or a grandparent, worked with palliative care or hospice much more often the experience is, oh, you know, I had palliative care or hospice for my grandma, and I found them really helpful. And so I think it sort of furthers the myth and misconception a bit that if there is some cognitive loading, or if there is some previous experience, the assumption almost feels like it would be negative, which I think is often not the case.

Daniel Eison:

I'm now thinking back to like two recent experiences I had where someone suggested hospice to a family. And their reaction was, oh, my mom had hospice and they killed her with morphine. But I think you're right that that's maybe not the overwhelming perception for most people.

Jared Rubenstein:

Yeah, I've had that experience to where people say things like, yeah, hospice killed my grandma with morphine. So there certainly is some negative myth and misconception out there. But I think it's not all of it.

Sarah Dabagh:

As we were getting ready to make this episode looking through programs around the country. I don't know that I saw any adult programs that don't come forward and say we are palliative care, because no adult hospital is going to deny that adults die. But I wonder if there's a pull from pediatrics to not want to admit that like we have a palliative care team children die at our hospital.

Jared Rubenstein:

Yeah, I think that's certainly an important point. And and you're right, I don't I'm not sure I've ever seen a hospital brag about their palliative care team, which makes me sad. But I think it's all kind of tied into it that if you're gonna brag about what an awesome palliative care team you have, it has to acknowledge some hard things about the way the world is and that children have bad illnesses. And sometimes children are unable to survive those bad illnesses. That doesn't make for a great billboard.

Sarah Dabagh:

I see even in the adult world the trouble of a consensus definition. And I wonder if that is some of the same distress with the idea of palliative care that we've touched on and I wonder if that's why you know, the wh o comes together they put together a definition and then 10 years later a paper comes out saying oh, you know, we tested the definition and some of us don't like it so we made it longer. We added more and I think we're the only specialty that comes with a paragraph when we are introduced because you know, I'm the cardiologist. I work on the heart is a complete introduction for for palliative care. It never seems to be that simple.

Jared Rubenstein:

I think that's certainly true. I think when I meet a new patient family, my introduction to the team, it always comes with a paragraph to talk about what it is. And I sort of name that and say, you know, it's not as easy as saying we're the heart team or the lung team. So here's the series of things we do, and including things like the interdisciplinary nature that's inherent in our field in a way that it's not necessarily part of other fields. So I do think it's helpful. Do you introduce yourself as palliative care and practice more the way it's labeled for the hospital, I almost always introduce ourselves just as the palliative care team to people because I feel like both would warrant an explanation. And I think an explanation is always justified. Because it's such a big and all encompassing field, I guess I feel like it's okay that the the introduction always comes with a little bit of a preamble and a paragraph. What worries me more is that when the the need for the preamble or the paragraph is because there's been some negative loading with something like, Don't be afraid, but I'm going to call palliative care or I want you to meet palliative care, it's not going to be as bad as you think, which are all things that happen in her head.

Sarah Dabagh:

I don't remember if this is in the video, or this is in the description of the video, Jared, but the idea of we are not the fire, I think it's so sort of apt in all the stuff we've been talking about.

Jared Rubenstein:

Yeah, I mean, I think at heart, our culture, and particularly our medical culture is quite superstitious, which I always kind of grapple with and feel like should be at odds with a profession that's sort of grounded in science and medicine. But the idea that, you know, naming something makes it true, or naming something will make it happen faster. If you're bringing in this team that talks about hard things. It not only means hard things might be happening now. But maybe it'll make them happen more if we start talking about them. One of the conversations that was sort of foundational for me in starting to think about this was I went to see a patient in our pediatric oncology clinic. And one of the oncologists who I know said, "Oh, hey, it's good to see you. I always really like seeing you. But it makes me sad when I see you here because I know somebody is having a really bad day." And I said, "I hate to break it to you, but this is a clinic for children with cancer. So everyone here is already having a pretty bad day. And I'm hoping that I'm coming to make one of their days better."

Sarah Dabagh:

I like that. I think that's beautiful.

Bob Macauley:

My name is Bob McCauley, and I am the middle director of the bridges pediatric palliative care team at doernbecher Children's Hospital at Oregon Health and Science University or OSU in Portland, Oregon,

Sarah Dabagh:

I would love to hear a little bit about the history of naming the program"Bridges" and where that came from.

Bob Macauley:

The story goes that when they were deciding what to name, the new palliative care team, some of the conversations went to whether or not to include the term palliative in the title because that can sometimes be a bit off putting those in the adult and pediatric world. And so they thought about trying to come up with an image that involves kind of going from one destination to another, which can mean a lot of different things it can mean from going from one critical incident in a patient's care and what that means in terms of revising goals of care, or re goaling as sometimes we talk about, or perhaps kind of more, even more profoundly the destination of going from one place to another in terms of life to whatever happens afterwards. And they decided to go with bridges for a couple of reasons. One is that they wanted something that kind of had a clear beginning and a clear end. So it wasn't sort of a nebulous concept, but rather there's one end of a bridge and a different end. And it also seemed to fit Portland because one of the nicknames for Portland is Bridgetown, because the Willamette River bisects Portland, dividing it into east and west, and they're 12 bridges over the river. And it seems like there's many reasons why it fits both geographically and thematically, that's pretty cool. A lot of people really like it. And some people really don't, we had one parent of an oncology patient that we were helping care for, who was an advertising executive kind of person who took me to task over the title of the name in a very kind way, and actually volunteered her services if we ever want to rename our team, because bridges immediately conjured to her the notion of dying, that it was a bridge from this life to the next. There was a local foundation that expressed interest in providing some funding to the team. So you know, when someone says they want to fund you, you do everything possible to grease those wheels, because pediatric Palliative care is never going to make money on its own. And so there was concerned before this big meeting with this foundation, that bridges might be sort of an off putting name. And so they had come up with other ideas, or at least the the intention to change the name of the team so that that wouldn't be a barrier to the funder. And they were ready to confess that when the funder interrupted them and said, one of the things we've love most about your team as we love the name bridges, and it is so appropriate to which the people on the team in the room said, we could not agree more. We adore our team name.

Sarah Dabagh:

Are there other families who adore the name?

Bob Macauley:

You know, I haven't had many conversations with him about it. I think that one of the things to say is that we are not really known in the hospital as the bridges yantrik palliative care team, although that is officially what we are titled, we're just known as bridges. So when we meet families, all they're told is that the bridges team is there to help them through difficult times or support them and decision making or manage symptoms. So the word palliative actually doesn't come into things. And I think bridges is just viewed as this title that they know us as and hasn't really, aside from that one I mentioned, prompted to many deep reflections. And I think that on a relative basis, that's probably a positive, because, in my experience, rarely our family's super excited to meet with the palliative care team. Some are actually, you know, very opposed to it based on their preconceptions about the word palliative. So the fact that we are at worse neutral, and maybe a little kind of characteristic of Portland, probably on a relative basis puts us ahead of the game.

Sarah Dabagh:

How long does it take in your introduction or in your relationship with families for the word palliative to come up?

Bob Macauley:

It varies among the composition of the team at any one point depending on you know, which attending was on service, who's in the room? I often don't talk about palliative in the sense that like, first of all, I think it's an it's an unusual word. We never use it in a nontechnical setting. And when was the last time you use the adjective"palliative" in casual conversation or the word-- or the verb "palliate?" Nobody ever uses those terms, I don't think.

Sarah Dabagh:

I'm going to palliate myself by getting a massage later on. Is not--

Bob Macauley:

Precisely. That's sort of an odd thing to say.

Daniel Eison:

I sometimes hear, almost pejoratively, you know, I work with a lot of oncologists, and they'll talk about how a patient "is palliative" now.

Bob Macauley:

Right. I completely agree. So I think it has something of a negative connotation. It also sometimes is inaccurately applied. You know, some people talk about palliative as a synonym for non-curative, which is actually not what it means. You know, it's interesting to go back to the derivation of palliative from Balfour Mount in Montreal. He coined the word palliative care, in large part, because nobody knew what it meant. So if you don't know what it means it can't have a negative connotation, at least at first. So when I introduce us, I say,"We're the Bridges Team. We help support people, support them in making decisions, keep kids comfortable," and I don't actually use any other adjective.

Sarah Dabagh:

Do you ever have a family who, weeks or months down the line says, "Hold up, you guys are a palliative care team?"

Bob Macauley:

We have not experienced that at least in during my tenure. I think in part, because by the time they come around to seeing the word, they've already gotten to know what we do. And so rather than the connotations of palliative tainting our work in their eyes, I think that our work might help transform their understanding of what palliative is what I would say, though, is there other words that get us into trouble, and actually wrote an article about this. One of the things that we put on our brochure was identifying the population that we serve as children with life limiting illness. And that did get us into a lot of trouble, which is one of the reasons why I really don't like the term life limiting when we're working with a family of a extremely premature infant who might not survive, or might start with some degree challenge, or conceivably could survive with with no him at all, ultimately. And when we said we're working with you, because your child has a life limiting illness, at least on the brochure, we seem to concede that this child would have a limited life, which his parents were not willing to concede at that point and felt like we were not aligned with them by virtue of that language. So I think that pallida isn't all isn't the only word that sometimes gets us into trouble.

Sarah Dabagh:

No, and I've gotten into trouble with that phrase, too because, and very fairly, some parents will say,"Even though my child's life might be short, that does not mean it's limited or less."

Bob Macauley:

Yeah.

Sarah Dabagh:

And that connotation is there for that, too.

Bob Macauley:

I think we do the best we can with what we have, and I'm a fan of trying to build relationships, then we're less likely to offend people with certain terms, once they understand sort of the motivation and the intention that comes with them. If we bring terms out first, before we have that relationship, then depending on how they interpret things that might have been well intentioned, it could actually create a barrier to working together.

Daniel Eison:

It brings me back to what you said about how you like to describe more what your team does, rather than what you are sort of in a similar way, I guess to how we think about treating pain functionally rather than on a number scale. Um, you know, it's more about like, well, what can we do for you? What can we do with you? What can we allow you to do? And not, you know, this is who we are what we are. So I think maybe the functional naming of palliative care teams, it could be a way to go.

Bob Macauley:

It's one of those things where if once you've used it long enough, you start-- you stop noticing it. And so when another team introduces us to a family and says, you know, we'd like to get a Bridges consult or have the Bridges team come by, I think sometimes it takes them by surprise that the families like"What's that?"

Unknown:

I think that reaction is equally existent for the word"palliative care," though. What's that?

Bob Macauley:

Yeah, I would totally agree. And so in a way, it's a fitting name for our team, especially in Portland.

Sarah Dabagh:

Any stories about your team getting together to play bridge?

Bob Macauley:

We never really thought of that. We have talked about leveraging bridges a little bit more. The bridge as a visual symbol is is a big deal. And especially around Portland, like people have t-shirts with all the bridges of Portland and known as Bridgetown. So I said, well, maybe we should do that, like go all in and have, you know, little pins with a bridge on it or have that be our emblem. And that, as quickly as I suggested it, was just as quickly kiboshed from a branding point of view. Our children's hospital has one symbol, Dolly, the little girl with the pigtails, and we were not going to be able to bring up any other symbol for any other team within the hospital. So--

Daniel Eison:

I suppose you can all get matching bridge tattoos and not tell anyone in the hospital administration.

Sarah Dabagh:

They can't stop that.

Bob Macauley:

Especially in Portland, that's a pretty easy thing to pull off from a tattoo perspective.

Tricia Keefer:

My name is Tricia Keefer, and I'm the medical director for the stepping stones pediatric palliative care program at CS Mott Children's Hospital at the University of Michigan. Ever since we started in 2005, people had been trying to convince us to not be called pediatric palliative care. And so we sort of dug our heels in for a while and decided that we really wanted to just be the pediatric palliative care team. So we were until March of 2018, we had a parent who approached us with the name Stepping Stones, we had been approached with other names before, mostly by providers, and even our department chair. This was a bereaved parent who'd been working with some of the families in our program. And he really observed that the type of interaction that we do is really like a sequence of stepping stones along the path or journey that a family is taking. And that there was just this family perspective of feeling lost and feeling without a clear direction forward. And that that really resonated with him and really resonated with some of the families he'd been working with. So we sort of tried it on for size, and talked with a number of our colleagues, some of our other families, and eventually, by mid 2018, decided to actually officially change our name. Although when we change that we went with the Stepping Stones Pediatric Palliative Care Program, because we had felt really strongly about maintaining the words palliative care within that, because we wanted to make sure that we were representing what we were doing in a way that was transparent and that no family was going to feel like they you know, signed up or met with somebody who they didn't want to meet with.

Sarah Dabagh:

And I think it's a beautiful name and that there is not a finite number of stepping stones implied. I'm wondering when you introduce yourself. So you use the word palliative care.

Tricia Keefer:

Yep.

Sarah Dabagh:

In your in every introduction.

Tricia Keefer:

Always. Well, I would say I do. I don't-- We have a pretty large team. But I would say our team members, I'll use the word "palliative care." I think our colleagues really like to call us "Stepping Stones," which is fine. You know, I mean, that's part of it. But we always do sort of a little intro to this is what we do. This is our brochure, here's our card, you know, so there's no, you know, sense of, you know, that we're trying to misrepresent ourselves. And I'm not saying that other programs that have a different name are misrepresenting ourselves as I guess I don't want that to be taken the wrong way. But we have this really open discussion about, you know, sort of who we are and how we can best be helpful today.

Daniel Eison:

Why do you think it is that your colleagues prefer the name "Stepping Stones?"

Tricia Keefer:

I think it's just sort of the age old relationship of palliative care, you know, a lot of people's brains with death, dying, end of life, hospice, whatever the negative connotation is. It's nice to give people an alternative set of language to use, but in our work, we try not to say things like a patient has passed or they, you know, might go on to the other side, we try to use the words death and dying and, and be really explicit. And so for me, the word "palliative" is you know, the best description of what we do and it's what we are trained to do. It's what we're board certified in. So I like using that alongside something that makes it palatable to other people.

Daniel Eison:

In your experience with families, how do you feel like they receive that?

Tricia Keefer:

I've never gotten kicked out of a room for saying"palliative care." Most families with it as a description will be open to discussing, you know, how can we best be helpful? There are some families I think, who say, you know, no, thank you. I think especially families connected with other families or other teams that haven't had a good palliative care experience. But I don't know that things would have been any different had I come in and said, I'm part of the Stepping Stones team.

Sarah Dabagh:

Are there any other teams in your hospital who either have been asked to or have on their own created an extra name for themselves?

Tricia Keefer:

I mean, I think there are a lot of teams that try to have some sort of name that in part describes who they are, and that makes it easier to say or more palatable. So like our short gut clinic is called the CHIRP Clinic. Our home based palliative care program is called the Partners for Children program, and our adult oncology palliative clinic is called the Supportive Care clinic. I think with the ones that are more palliative-focused, I think it was a little bit about, you know, how do we present ourselves in a way that people are going to be accepting, and let us in the door to give the spiel about what we do, I guess, Stepping Stones at one point was going to be our nickname. And we just decided to make it official.

Daniel Eison:

There's an idea in the image of like progress forward and movement towards something. That's an interesting and maybe fruitful kind of metaphor.

Tricia Keefer:

The reason we really like Stepping Stones too was that sometimes you're like crossing a river on a path that there are stepping stones, but there might be a really big jump in between two of them, or there might be a stone missing, or one might be really slippery, one might be really stable and big. And that you might actually take a very different set of stones across the water than what you were initially anticipating its progress forward. But there's also the opportunity for progress sideways and backwards. And you know, in unexpected ways.

Sarah Dabagh:

Do you ever have a family that really holds on to the image and says, "Okay, what stone are we on now?" Or "What's the next stone after this stone?"

Tricia Keefer:

We have had some. I would say that it varies between our team members, how many people use-- use that imagery in that narrative as a big part of their conversation or not. And so there are certainly some families who that is really just how they describe, you know, this is what stone I'm on today. My personal narrative doesn't always go with the whetstone I'm on, although I would love to incorporate it. It's-- it's newer, you know, it's two years, and I've been practicing for well over 10 years, and so I'm just not good at incorporating new things.

Sarah Dabagh:

You're not on that stone yet, is what I'm hearing.

Tricia Keefer:

I'm not on that stone yet. Exactly. But I wish I was.

Sarah Dabagh:

We have more of a formal introduction of who we are and what we want to do. But I have to skip that just to comment on the fact that Dan and I were both looking at this email from you. And both of us just realized for the first time that that picture is you wearing a koala outfit?

Justin Baker:

Yes, it is. That outfit. That's why I was telling you this. I don't just have this set up for you. This is real. This is all here in my office. It's all-- it is the real deal. Hi, my name is Justin Baker from St. Jude Children's Research Hospital here in Memphis, Tennessee. I lead our Quality of Life and Palliative Care Initiative here at the hospital. And I'm one of our attending physicians on our pediatric palliative care team, which is known as the QoLA team. And koala is spelled Q-O-L-A and it stands for quality of life for all.

Sarah Dabagh:

When you are introducing yourselves, how much does the koala image come into that introduction?

Justin Baker:

When people look up who we are, or our appointment shows up on their schedule, it actually is called the quality of life appointment. And then when we walk in, we have in front of us folder, and the folder has a koala on it, we have a refrigerator magnet, which has our 24/7 number on it. And that is of course a koala magnet. We have a scratch paper notebook that we give them which of course has the koala on it. And the last thing that I'm very proud of is we give them a stress ball koala. And they actually get these four things. And we say something like if you're having a difficult day, or if you're having a tough time, think about squeezing the koala. And if that doesn't work, turn it around and look at its butt, because on its butt is our 24/7 number and you can reach us and we'll do whatever it takes to help your day be better. So in this meeting with these children, I get to use the word"koala" and "koala butt" and that seems to go pretty well. I really think it helps with introduction and kind of taking the air out of the kind of the emotions in the room or kind of the concerns in the room if there were any to really use humor. It's how we train people really to talk about things here. It's actually really interesting now to hear our CEO, if he tries to say the word palliative care, he always says,"palliative care, I mean quality of life." And so so they those are really viewed as one in the same in the vernacular here of St. Jude.

Sarah Dabagh:

I think it's an amazing introduction and I can't imagine not getting a laugh or at least a smile...

Justin Baker:

That's right, the koala butt usually gets a smile from everybody, including myself and I usually start laughing before I do it because I'm so excited to get to say the word"butt."

Sarah Dabagh:

"How many years and that hasn't gotten old?"

Justin Baker:

No, I know it's been, yeah, seven or eight years now but it hasn't gotten old. I think that says a lot about who I am, you know, I don't have too serious of a bone in my body. Palliative and end of life care is-- is, you know, palliative and hospice care or any of these, hospice and palliative medicine, all these terms are still even to this day, very scary to people. And right away, we realized in pediatrics, that was gonna be a bad idea. So even when we first opened our team here, institution-wide back in 2007, we called ourselves the Quality of Life Service. And you know, after about three years of that, maybe four years of that, I felt like we still were becoming kind of known for end of life care. And so I decided to go kind of full-on rebrand. And that's when the koala was introduced, recognizing that the quality of life piece of the palliative care component of what we do was always the inarguable piece.

Sarah Dabagh:

What occasions bring out the actual koala costume?

Justin Baker:

Well, so the koala costume, to be perfectly honest with you, is pretty hot. And it certainly comes out probably about once every other month, it certainly comes out if somebody is having a really difficult day on a clinical perspective, I'll try to cheer them up with that. It comes up in educational events, it comes up in large meetings where I'm worried people are going to think of themselves or think of the situation as too big. So I've worn it multiple times in Grand Rounds or in other-- other situations like that. So it-- I would think that the koala is a little bit more PR when it's on my whole body. Oh, the most recent time actually, I have a video of this in case you need to include it in the in the podcast. The most recent time was in celebrating the 2020 graduating fellows, I put on the koala outfit, and a latex koala mask and did a backflip into my pool. And that was that was actually the most recent time I had it on, which is about three weeks ago.

Sarah Dabagh:

We will post both that and the photo that you sent us in our show notes with your permission.

Justin Baker:

Perfect. Yeah, absolutely. You have that permission. I put it all over Facebook already. So I tweeted, I tweeted the flip. So it's out there.

Daniel Eison:

I'm really actually just kind of speechless. Like this is-- this is an amazing aspect of this team that I don't think is really shared by any other team I've ever heard of. And--

Justin Baker:

I think so as you talk to people, please. I mean, I've purposely not copyrighted this because I really want have the opportunity to use it because I think it's a really helpful way to think about palliative care. And you know, even teams that have kind of more traditional names, I still think that a lot of them use either hospice or palliative. And I think there are real reasons to do that. I get that. And that's why in our hospital, we are the Quality of Life and Palliative Care Initiative. But I think in meeting with families, there's just no reason to not remove as many hurdles as possible on the front end. And I-- we certainly have not experienced the downside to doing it this way. Medicine is viewed as, even pediatrics is viewed as a little bit more stodgy and kind of wanting to take ourselves a little too seriously, and so it helps shake that up a little bit.

Sarah Dabagh:

I'm wondering if anyone has ever reached out to you to ask permission to be the koala team or if there's ever been like a franchise opportunity with these items, right?

Justin Baker:

I know! That's what it feels like. But no, yes, we've had a couple people that have and I've sent them Is there a term for a group of koalas? everything and there is another koala team in Canada, but it's certainly available, so as you guys are talking with folks... For us, it's-- it's been I mean, useful is the wrong word. I mean, it's been helpful on every single front, you know, from an academic standpoint,it's been helpful from an educational standpoint, it's certainly been helpful in a clinical standpoint, it's been helpful in a unity standpoint with our team and another time that I didn t tell you that we wear our ko

la outfits:

we all wear them at Halloween. And so, St. ude Halloween is a really big eal. Before the koala had r You know what is really sad? I would super, super encourage you ally caught on people thoug t we might be mice as we were wa king around in our outfits. I'm ike, "Come on! No, we are the k alas! What are you not to look up a bunch of things about koalas. It's just that they're fairly, they're fairly solo. So the answer your question is no, because they don't hang out in groups. The other part is, is there's like rampant sexually transmitted infections in these things. So it's terrible. So don't don't look up anything about these things except their picture. They're a little bit angry. Also, they're not they're not sweet. So we lie about all of those things. And we call ourselves a team. So that is the group of koalas is the team.

Sarah Dabagh:

Do you ever feel like you make it to a certain point in a relationship with a family and it occurs to them later on that you are a palliative care team?

Justin Baker:

It has happened a few times where people would go and look me up, or look up a member of our team. And it says that we're part of the Division of Quality of Life and Palliative Care. And then they'd be like, "Oh, so you're a palliative care team?" And I'd say, "Yeah, yeah. What do you know about palliative care?" And they'll say, "Oh, it seems like it's, you know, it's about end of life care," and say, "Oh, yeah. But that's not how we use it here. Don't-- Don't worry, your child is certainly not dying, as you know, I mean, look at him jumping up and down over there. You know, this is what we do here at our institution, which may be different than how you have heard about it. Certainly, it's different than in the adult world. And we really try to partner with your primary team, and really focus on quality of life related issues, whatever those might be." And so it still gives us another opportunity to talk about what we're about. And it has never led to a time when people kind of felt like we were tricking them.

Daniel Eison:

Are there any other teams at your institution that have similarly rebranded themselves?

Justin Baker:

No, unfortunately, I feel like there should be. One of the names that just should not exist is the Pain Team. I absolutely 100% feel like at a minimum, they should be called the No Pain Team. It's a little bit like nails on a chalkboard to hear somebody say, "Let's consult the Pain Team." I don't-- I don't want anyone inflicting pain.

Daniel Eison:

If I were naming a team, would I name them palliative? Or would I name them something else? I don't know that I could say what's the right answer at this point.

Sarah Dabagh:

I think one thing that I'm noticing is equally loving programs will make equally loving decisions to either highlight or forego the word palliative. But it seems to be split about 50/50 in the teams we've talked to. And again, the selection bias there is we're picking the teams with the most interesting names. So the teams that call themselves just "the palliative care team" are not being highlighted in this episode. But I think it's-- I think it's working for every single person we've talked to. All of them feel like it is working for them whether or not they are using the term.

Daniel Eison:

That is true. And this may be one of those situations where there are just multiple right answers. And it's more about how you present yourself and not what you call yourself.

Sarah Dabagh:

Though I don't generate as many laughs in any of my introductions as I think the koala butt does. So I have to say really that is my favorite that has come out of this. That is my favorite name.

Daniel Eison:

This has been such a fun episode to record and we hope that you, our soon-to-be-devoted listeners, enjoyed it too.

Sarah Dabagh:

We'd like to thank all our guests for joining us on this episode of PediPal, and thank you for listening. Our theme song was created by Kevin McLeod. You can follow us on Twitter, where our username is@Pedipal. That's P-E-D-I-P-A-L. You can find the notes for this podcast and all 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. See you next time!

Jared Rubenstein: Everyone here is having a pretty bad day
Bob McCauley: When was the last time you used the word "palliate" in casual conversation?
Tricia Keefer: I've never gotten kicked out of a room for saying "palliative care"
Justin Baker: I get to say "koala butt"