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 in this podcast are ours alone and do not represent our respective institutions and they do not constitute medical advice. If you were expecting some sort of semi-witty joke right here, thank you for participating in our usual intro ritual. And we're happy to talk a little bit more about that today.

Daniel Eison: 0:28

We are now in a shared state of liminality at this point in the PediPal ritual, which is to say, the quality of ambiguity or disorientation that occurs when participants in a rite no longer hold their pre-ritual status, but have not yet begun the transition to the status they will hold when the ritual is complete.

Sarah Dabagh: 0:48

Yes, Dan is doing this service very kindly, because middle of one of our recordings, I had to on-the-side Google liminality, because I'd never heard the word before.

Daniel Eison: 0:57

But you were familiar with the concept. And I would actually argue that most people in pediatric palliative care are familiar with the idea of liminality, even if they haven't heard the word before, because so much of what we do, is steeped in the liminal.

Sarah Dabagh: 1:14

And this is the part where Dan and I are trying not to be 18-year-olds taking Philosophy 101 and starting their essays with "Webster's Dictionary defines ritual..."

Daniel Eison: 1:23

I mean, yes...

Sarah Dabagh: 1:24

Yeah, I think... let's read it.

Daniel Eison: 1:26

So Wikipedia, which is my go to.... According to Wikipedia, a ritual is a sequence of activities involving gestures, words, actions, or objects performed according to a set sequence. Man that's like anything! Ah, and then it goes on. Because if reading Wikipedia is a sin, the greater sin is reading the first sentence of Wikipedia and stopping

Sarah Dabagh: 1:53

Then moving on! Though the Webster's Dictionary was usually a sentence or two at a time. So I feel like it's not too much of a departure.

Daniel Eison: 2:02

True, although ritual I mean, like obviously, this is a complicated anthropological topic, and we are doing lip service to it in our episode, like there's a lot here, in what ritual is that we're not getting into.

Sarah Dabagh: 2:16

But we would also like to create a space to talk a little bit about what ritual means to pediatric palliative care and how it weaves into the fabric of our work.

Caitlin Scanlon: 2:30

Hello, my name is Caitlin Scanlon, and I'm a licensed clinical social worker. I previously worked at Riley Hospital for Children in Indianapolis on their pediatric palliative care team. And I now work in private practice, specializing in grief and bereavement, working with families who are experiencing children with lifelong life threatening illnesses, or are experiencing those things themselves.

Sarah Dabagh: 2:51

Thank you for coming on. We reached out to you based on an image that was really, really halting, which was the image of the remembrance wreath that you had created when you were in Indiana. And I'm wondering if you can tell us a little bit about that. And where that came from.

Caitlin Scanlon: 3:10

We actually took quite a bit of time to figure out what we wanted to do as a team for ritual of remembrance for our patients who had died. And we wrapped our minds around the idea that we wanted to honor them in a way that showed their vibrancy in a way that we could bring some of their personalities to the space, but also in a way that wasn't necessarily lent itself to any denomination, or any sort of thing like that. So I wanted it to kind of be neutral, also give some personality, and truth be told, one of the other palliative care teams in Indianapolis, an adult team does a similar concept. And so we were like, well, what if there's a way we can adapt that to our children? And also have it be this beautiful piece of the office that can be out in the open - acknowledge the lives but also maybe not as jarring as a list of names on the wall or a bucket of rocks, right, with each child's name on it, that for learners or people coming in- it could be a conversation starter, a really beautiful way to start talking about grief. And not this piece where people are afraid to ask about it.

Sarah Dabagh: 4:17

You know, I always wonder about the bucket of rocks example. What do you do in the bucket of rocks is full?

Caitlin Scanlon: 4:23

It's a really beautiful way to remember them, especially as we're taking that moment to write the name on the rock as part of a ritual for ourselves. I think there does come that problem though, right, is we can't just have canisters of rocks everywhere. And that was one of the things with the wreath is we said, well, we have a hallway even within our own suite, or the palliative care offices at Riley. We'll see when they start to overlap one another and to avoid that - we'll start a new wreath and we'll hang them up in the hallway. So we'll have this hallway of beautiful colors with wreaths can represent those children without the worry of - shoot, what do I do with this whole canister of rocks? That represents so many beautiful lives that we want to continue to honor. But I think some teams have made rituals of like placing the rocks in really beautiful parks where they can honor the child in another beautiful space and have some kind of ritual around that as well.

Sarah Dabagh: 5:21

Was there ever a time your team didn't have a ritual of remembrance? And what did that shift feel like when you started doing the wreath?

Caitlin Scanlon: 5:28

Well, we didn't have a collective team ritual for the first several years that I was there. We would it more informally take a moment at the beginning of every day. And so we would have this moment, especially if it was a patient that we work frequently with, where we would honor that person informally. What happens, I think, unintentionally, in those spaces, sometimes is families that we haven't been as involved in, just don't hold as much in those spaces, right. And that doesn't mean that we don't truly and beautifully care about those patients and the families we work with, we just don't have as much history with them. So you get a little bit of this disproportionality I think that happens, where families that maybe had a lot more... like we as team members, we also get emotionally attached, right? It's impossible. It's what you do with that emotional attachment, I think which is so important. But we do get more emotionally attached. So how do we find a way to make sure that we are looking at honoring each one of those individuals continuing to speak their name, give the respect and the appreciation to each individual life that was lived? And also coupled with, you know, the wreath is also this idea that we develop these almost individualized bereavement follow up plans for each one of those children. So the way we would start our Monday morning, I would start it typically myself - although sometimes other team members would do it as well - open with a passage or a poem regarding bereavement that helped open that space of reflection, we had a candle lit in the center of the wreath. And then for each child, if we knew their favorite color, or there was a color that reminded us have them, we would use that color ribbon. And if we didn't, then we would just use one that we thought represented some piece of them in that space, and we'd say their name. And as I tied the ribbon onto the wreath, people would share memories of working with that child, funny things that happen, heart-warming things that happened, but really breathing life into that space. And I think fundamentally, even though we didn't include families in this, families want to know that their child is still talked about that their child is still loved that their child's memory is still alive. And so it's kind of a piece that we can do for that. So within that, we shared memories or shared experiences with that family, we then discussed as a team, who would make follow up. Because while yes, I'm a trained clinical social worker, sometimes I didn't have the closest relationship with the family. And so in those spaces, if the nurse practitioner on our team or the clinical nurse specialist, the doctor, whoever it is, does it make sense for them to do the follow up? So do they want to do it together? Do they want to do it separately? What does that look like? And we could kind of have that conversation in the space too. So there was a little bit of logistical practicality that held us accountable to really doing the work that we believe in, that in our busy days sometimes gets pushed to the side, unfortunately, because we have more pressing inpatient matters, for example.

Daniel Eison: 8:28

I think there's something notable in the way that with your ritual, there is a blurring of the line between the sacred and the mundane. And that, in a lot of ritual spaces or with a lot of rituals, they are kept separate. But in the work that we do, there is often blurring. And I think it's really interesting how your practice reflects that.

Caitlin Scanlon: 8:54

Yeah, absolutely.

Daniel Eison: 8:55

You and your team interact with the wreath when you're tying a new ribbon on. What kind of interactions do you and your team - and any one else, actually, in that space - have with the wreaths? In other times when you're not tying ribbons on to them, what is it like for them to be there?

Caitlin Scanlon: 9:14

What it did is it opened up conversation, because people are like, well,"What is that wreath that's there?" Or like "what is that for?" Right? And then you get to kind of breathe it back into the space. I think there's a lot of trainees in the hospital, especially I would say in my experience, like doctors and nurses, that are really interested in this bereavement piece, but maybe don't bring it up or are afraid to navigate that or want to do the work but don't know how, so it gets pushed to the side. And is there an opportunity to really bring that into the space and then talk about what do you do when when you have a patient who dies? Right? Because most of you have also rotated through the ICU or rotated through Oncology and had a patient die, like what did that look like? How did you manage when you got home that day? Or what did your co-residents or your precepting nurse... Like, how did they address it with you? Opening a space of, "That's great. You're rotating with us for a month, and you see what we do. But what what are you going to do for sustainability in this space?" Right? Because there's comfort, there's beauty, there's a safe space within ritual that I think exists. I think that's why we have rituals, right? That, if nothing else, especially in bereavement, and I see this with a lot of families I work with, it gives you a space to allow yourself to grieve.

Sarah Dabagh: 10:33

I think there's something there in that desire from the medical team to be part of bereavement, but that feeling that they don't know how to, and the safe space of ritual that says, here's the place, when you're putting one foot in front of the other, here's a place to put your foot next, right here is something you can do. That's one of the things that brings that comfort, that brings that beauty to ritual that sort of gives you when you don't know where to step, a place to take your first step. I'm interested in this choreographed dance between the team and the family. With the phone calls and the standardization of the follow up, how have your teams navigated stepping into the family's dance, let's say, if they have invited people, from the team to funerals, and you're looking at standardization and treating every patient equally. How does that work?

Caitlin Scanlon: 11:21

In my work at Riley, I went to one memorial service of a family who I had worked really closely with for about four out of the five years I was there. You know, I have some colleagues, like some nurses on units or other colleagues who go to a lot more. And I made the decision that I wasn't, and not because I don't care for these families so deeply, but because I know that these families also talk to one another. And I think that there's an inherent piece of me that wants to be sure that one family doesn't think that I cared more or less for them. Because I didn't go to their child's memorial service. I have found when families at least hinted at me being there, I did a little bit more close follow up the day after I knew the memorial service happened, right? How did it go? We can find that common ground of support without a family potentially saying that they saw me and another family didn't. It comes from such a beautiful place when we want to go to those things or support families. But we also have to be mindful that oftentimes we're another loss for that family. So what is the commitment that we're putting forward as individuals? And is that sustainable when you have give or take 100 deaths a year that are happening for your team?

Sarah Dabagh: 12:35

That hits really hard - because it's a rule that I find myself struggling with. When there is a family who looks at me and says, "Sarah, you're a big part of this journey, can you come?"

Caitlin Scanlon: 12:46

When we make a deep connection, we also don't want that connection to end. And so just like we tell families that you know, there's no guidebook for this, right? There's no guidebook for us as clinicians in this space, either. What I have found helpful for me is taking a look at what is for me, what is for the family, and how can I navigate that space within myself, right? And some of that is talking through it with the team. Some of that is talking through it with my own therapist, or finding those spaces where I can explore like, well, what is it about this that's leading me in this direction? Or this direction? With the profound grief I have? Is it like this profound grief I have for the loss that I'm experiencing? Is it the profound compassion that I have for this family who's grieving the loss of their child? So really looking at whose grief and how is that manifesting? And how do I navigate that as an individual and then an individual within my team and individual within the system? All of those pieces together.

Sarah Dabagh: 13:43

Are there things you found yourself doing that were within your sphere as, Caitlin, a social worker, but didn't include the rest of the team?

Caitlin Scanlon: 13:50

I do a variety of things. I would oftentimes I love the "Baby Got Back" example, because I think it pray for my families. The other thing is, if I was working with a child who I knew had a favorite something, whether it was like a color, or a candy, or a song, if I came across that thing, I would take a moment, I still do that. There are certain songs where patients, on their last day of therapy, or in our deep conversations about what they thought end of life would be like for them, they shared that like they want this song to be playing when I hear those songs, or sometimes intentionally play them, right? Especially if it was like right after the death like finding a space and way to honor them enjoying that time, right? So I'll share, one of my patients, it was her last day of chemotherapy at the time and I was in the room with her and her mom and we said okay, let's have a dance party. And the song she picked was "Baby Got Back." I kid you not! And we're like the most absurd thing in the world. Like I'm dancing in a children's hospital, in a patient's room to Baby Got Back - me and her mom still got her out of bed with her IV pole and like twirled her around. And so when I hear that song or there's a variety of other songs and patient stories too. But I had a client or a patient who told me that I was an old lady for liking 100 Grand bars. I don't think chocolate and caramel and rice is like something that we shouldn't all love, but she insisted that it was an old lady candy, right. So every time I have those, I kind of think about her and send a message, like, think about her and think about her family and where they are, and continuing to breathe those people into life. Because the life that they live deserves to be honored forever. And I think coupled with that is the piece of I've always been one at the end of my day, especially if it was a day where we experienced a death - to take a few moments at my desk to reflect. Which sounds like a very non-ritual ritual. But it was a ritual, taking that that time to put everything away for a minute, sit there reflect on kind of the work that I did, and also the life that was lived, and then head home. Having that space so that I can honor that and give it the time it deserves instead of running to the next thing, which I think we're also accustomed to doing. illustrates really well the cloud of different emotions that are part of bereavement, right? You hear that song, and it's the joy of that moment, but the sadness of the loss and sort of all the complex emotions together at the same time. And I wonder if that's why the wreath seems so haunting and halting to me the first time I saw it, because it's so colorful, and it's so joyous and the way that it is displayed. And I think it's a really nice example of that whole sort of emotional mix that happens in bereavement. This beauty within grief that happens, we talked about this palliative care, like you can hold two things at once. That doesn't just go away when the person dies, we continue to hold those two things at once, the reality that we can still enjoy things that we do still need to go to work that we do still need to continue all of these things to be functional adults, while also recognizing that they need time and space to cry to be mad to experience a full range of emotions. And those things coexist. I can have a dance party with a family, that doesn't mean that their child isn't super sick. That doesn't mean that this space of illness isn't present, but we choose in that moment to also enjoy that. Right? And I find that in grief, right? Which I think is often really hard for individuals, too. Like, is it okay to laugh? Is it okay to, like, enjoy myself? And the answer is yes, there is no one way to grieve. And even in our moments of happiness, a lot of individuals will say, like, I'm sharing that moment with my loved one. The wreath is a really interesting expression of that. People are like, "Oh, this beautiful wreath," and then you tell them it represents-- each ribbon is a representation of a life that we've cared for that's no longer physically present with us. And then the face drops. And you have to remind individuals that it's okay to also appreciate the beauty that each one of these is a beautiful life that was lived no matter how long or short, there was a profound love that was present for that child, no matter what. I think that it all goes back to that piece that it really was able then to open a conversation, right, that grief isn't always this sad, sad thing that we sit and we can't function and we cry. Yes, that's all part of it. But that's also the beauty of grief, that it is all of these things at once.

Kristen O'Grady: 18:31

Hello, my name is Kristen O'Grady and I'm a music therapist. And I work for Accent Care hospice and palliative care of New Jersey, and I'm also adjunct faculty for Montclair State University in New York University. In terms of pediatric palliative care, we're all kind of often suspended in this space between diagnosis or a really significant health event and end of life. So we kind of like occupy this sort of ambiguous space at times where there might not be clear passage, we're not really sure what that-- how that will unfold. And we look at greater understanding of the qualities of that space and how that can relate to other periods of liminality in our lives, like adolescence, for example, right, where this kind of like messiness of, you know, in between, like, we're not kids anymore, but we're not yet adults, it's really clear that ritual plays very significant roles in passage from one phase to another, sort of like in adolescence, for example, we have various rituals, which would mark the transition. Whether it is smaller rituals of independence, you know, in the case of my kids, like, getting a phone or going out, you know, riding around by themselves on their bikes or being able to, you know, walk to Dunkin Donuts or something, I don't know. Or larger ones like graduations or significant birthdays, right like a Bar or Bat Mitzvah or Sweet 16, or something like that, Quinceaera. Those are marking transitions from one phase to another. And so then we think about ritual then in the work that we do, and what are the smaller rituals, which mark through transitions in time? Maybe those are clinical markers in disease progression, right. So sometimes we might find ritual there. The way that we open and close our time with patients and families. And then maybe larger rituals, such as significant things that we do with our teams following the death of a patient - memorial services, an example of larger, more defined significant ritual. And we think about these smaller moments as being just as significant and marking time in that way as well.

Sarah Dabagh: 20:46

I love how you mentioned both diagnosis and death as two different points of transition. And I think we think about bereavement rituals, we think about memory making rituals, we think about end of life rituals. I'm curious actually, to go to that other end of the spectrum, are there rituals you think are part of diagnosis or a part of first meeting a team that are important and meaningful for us? Or the family?

Kristen O'Grady: 21:11

I'm a music therapist, right, so in music therapy, one of the-- really one of the rituals that we think about is meeting in the music, right? What does it look like to meet someone in the music? And what might we take from that to create ritual going forward so that there's some expectation of what's to come? And part of the role of ritual is creating expectation. And it's also marking time. It may be smaller things like the place that you find yourself sitting in the room, if you are in a family meeting space, and it's the same space, usually, where you have family meetings, do you find yourself sitting in the same chair to ground yourself, right? It's a place where you begin to find comfort or grounding, because it's a chair that's familiar to you. So it's maybe the first time for the family, but it's certainly it's likely not the first time for you as the clinician, right, or nurse practitioner. So do those rituals help you to make those transition with the family, in order to be grounded and available, then, to have that conversation?

Daniel Eison: 22:16

I think there's a lot of really ritualized or ritualistic aspects of so much of that. I'm thinking about the initial consult that palliative care does - I'm thinking about the family meeting. That is one big ritual, right? We prepare in a standard way. We have chairs, we have tissues, we sit, someone gets sent to go get the family, the family processes in - that very much has this kind of rhythm to it, it has this regularity to it, at least for us. And we say many of the same words. Maybe I'll catch some flak from my palliative care colleagues for saying this but, like, it's a little bit of a script, right? Like we ask the same five questions in our initial consults. Yes, we're willing to have flexibility in that. But there is definitely something I find very ritualistic and sitting down and saying, "Tell me about your child."

Sarah Dabagh: 23:04

I will though name that it's a one-sided ritual, in that it's familiar for us and we are, I don't want to say comfortable in it, but we know the flow. We know the ritual. I love the concept of "meet them in the music." We are there. We know that dance, the family knows nothing. The family is learning words for the first time, the family is asking me is a family meeting like a business thing. It's a one-sided process that initial ritual. Bereavement, on the other hand, feels more like a two-sided ritualistic dance.

Kristen O'Grady: 23:35

Yes. And no. I think I'll push back on that a little bit.

Sarah Dabagh: 23:41

Yes, please!

Kristen O'Grady: 23:43

Because I think for folks who work in bereavement, there is a familiarity in that rhythm as well, where we're supporting families after the death of their child, we've done that before. Hopefully, likely, it's this is the first time a family is walking that path. Even if they've had other bereavement experiences likely this is a more unique bereavement experience. We have language there, too. We have ritual there, too. We have walked a path like this before. And quite frequently. There are rituals that are prescribed, maybe depending on family tradition, faith tradition, things like that. So there are kind of rituals that are prescribed to a certain extent, are expected. There's also a great level of uncertainty, especially when we're talking about the death of a child because so much of that ritual looks quite different. You know, if you've ever attended a service, a funeral or memorial service for an older person, a lot of times there's a mourning and then there's also this sort of joy and reflection of this person's life. They've lived to a very old age and there's a sadness but there's also reflection of this being an expectation of life, and the same isn't so true when we're thinking about what that looks like for a child's memorial or child's funeral. There's great level of disparity there, you know, depending on the nature of the circumstance. For us, as clinicians, practitioners, having our established rituals, I think grounds us in a way that we're able to continue to walk this path over and over again with families. Because in order to do that, I think we first need to establish for ourselves that level of comfort, of familiarity, and of expectation, even though we are working with people who don't have those things.

Daniel Eison: 25:36

So it's sort of, in a way, like each time, we as palliative care practitioners have these rituals that we go through. And part of that ritual is each time inviting someone new into it, and saying, like, come into our space, come into our practice. It's a way of, as you were saying before, of transitioning from a state in which the team and the family don't know each other to a state in which we are working together. And so it's almost kind of like a ritual of unity in some ways. It's an initiation into certain knowledge from both of our parts. It's about us learning what the family knows, it's about the family learning some things, usually, about what's happening to the patient. I think what Sarah was getting at earlier, and I think is really interesting is that by the time we get, if we get to that other set of rituals that are around the end of life, it's a very different feeling, because the family has started to develop... Ritualality? Ritualness? Ritual... they have developed rituals of their own.

Sarah Dabagh: 26:37

Or they've gone from being led in rituals to starting to lead.

Daniel Eison: 26:41

Yes! Sometimes you'll meet families who are already leading, like imagine your patient who has a complex chronic illness. And the palliative care team is meeting them for the first time, but they're a teenager already. And the family has their care down, and you come in, and you enter part of this very established rhythm. And if you try to go against that, you know, introduce your rituals... it would be like walking into a Catholic mass and starting to do a different service at the same time. It would be very chaotic.

Kristen O'Grady: 27:17

One thing I'm thinking about there is that these opportunities for ritual should never be something that's prescribed. If you ascribe to a faith tradition where someone dies, and you do certain things, right, those are kind of prescribed steps that you would take. But what we would offer as clinicians is so much more dynamic than that. And if it is prescribed, we might lose out on some of those nuances to engage in these moments as part of our clinical... intervention sounds-- isn't quite the word I'm looking for. When someone is moving to end of life, maybe we do handprints and then we do a recording of some kind. And that, you know, if those things become prescribed, we're missing out on the dynamic interplay between the family's needs, our needs, our expertise, how to kind of marry those things together in order to walk with the family in the way that they need us to.

Sarah Dabagh: 28:15

I love that we've talked about rituals that feel a little bit more-- I feel like we're all searching for words today. I don't love the word"mundane," but normal. Rituals that feel very normal. And I'm wondering if you have stumbled into, or your team has stumbled into, by design or by accident, rituals that are abnormal or different?

Kristen O'Grady: 28:34

That's a great question. So one of the things I'm thinking about that previous team that I've worked with, that we didn't necessarily set out to do but became an established ritual over time. We had a memorial service for each child that died. So in addition to whatever the family would do, externally, we would have an internal service specific for that child, not just an annual service. But specific. Something that evolved as sort of an unspoken way is that we noticed at some point that we were selecting a unique song at a certain point in the service, it sort of was at a pivotal point with reflection during the service, and it became our ritual of offering this remembrance that came from us. And I will say that sometimes it felt like an untenable thing. When you're so many services, and there were times when we were up until like the 11th hour, because we had created this precedent for doing this. But each time we did it, it was kind of the meeting reinforce the fact that we wanted to continue with this same ritual. But part of the ritual, though, became the gathering together of the music therapists and we didn't really necessarily work all together, but the gathering together, the selection of the song, and the rehearsal, it was an opportunity for us to create music together which didn't really exist, except for the fact that this child had died and we were putting this together. And so it was through that ritual that we created extraordinary meaning in that experience. So at no point, were we doing the same thing over and over again. Okay, we have another memorial, another memorial... it was like, an actively creative experience every single time, even though sometimes it was like, there can't be any more songs left in the universe that we could possibly come up with! But somehow, somehow it always worked out. So I found that to be one of the most personally meaningful things that I had participated in, and probably slightly more unusual than some of the other things that I'm thinking about.

Daniel Eison: 30:32

That's a beautiful ritual, and I think highlights something important about what ritual should be versus what ritual can become. You mentioned the spontaneity and the creativity of it. Behind that is the flip side, which is ritual that has become calcified, and just rote, and something that we just do because we do it, and we don't really know why we do it.

Kristen O'Grady: 30:56

There's something really interesting about music, and live music in particular, and making music together. There's a before that music ever existed, even if it's a song that you're recreating, right, you didn't write the song, it exists someplace, we can go listen to it, but it doesn't exist like this. And it will never exist like this again. When we come together, and we witness music being created. And in that way, we're a participant, or we're actively involved in that creation, right? We're singing, we're giving our energy in the audience. We're playing instruments. There's a before. And then there's an after the music itself becomes part of that passage. I talked about the creation of it, and like the development of the selection of the song, but actually the act of it, and the performance of it, or the offering of it at as part of the service. And it is-- itself marks that passage as well. And that's a big part of music therapy in palliative care, having these experiences of creation and of transition, like these mini transitions, marking time within sessions. So it's almost like we're doing these smaller rehearsals for a bigger transition. And so that's one of the theories that we would apply in doing some of this work, we have creation, we have newness, and we have movement, at the same time that we are talking about decline or other endings to have those things happening at the same time. So it makes I think music and music therapy, in particular, really an interesting facet of palliative care.

Sarah Dabagh: 32:30

And there's another concept in there of making something, in honoring that child, specific to that child. And that ritual would not be the same if it was the same song at every service. And then there's something about that creation, and that creativity and that molding of the ritual to the child that feels really important and meaningful.

Kristen O'Grady: 32:49

I agree with that. I think in the same way that starting the family meeting, you have similar questions, or you have the same questions that you ask as a scaffolding, right, you kind of go in with knowing this kind of roadmap, but you're remaining dynamic to the way that the meeting evolves, it's not that dissimilar, right. So we might have a roadmap, we've done this before, obviously, we're not going in with a completely blank slate. But it's the creation - remaining open to the possibilities that might unfold from the meeting, or from the session, from the experience that allows us to, you know, be sensitive to where a family might need us to move.

Sarah Dabagh: 33:24

A lot of the rituals we've talked about are

Kristen O'Grady: 33:24

I think about the families who frequently about reaching out to the family holding hands and taking a step forward. Together. I'm wondering if there are rituals you notice visit the hospital and almost instantly decorate the room, yourself do that are just about Kristen, or about those rituals, you see families do that, or just about that family completely separate from the team, because they're used to being there. And that is the way that they set the space for their child. For myself, it's changed over time. A lot. You know, what I needed for myself when I was earlier in my career is a lot different than what I find myself doing now. And so allowing that to kind of grow and change based on what my needs are. I find that the thing that I do the most when I've had a child that I work with passed away is that I need to go outside in fresh air as soon as I can. So that's my way to mark that transition is something about going out into the fresh air and then like really taking that deep, mindful breath of air that's outside of the building. Where I am is something that I find to be part of my ritual of closure. And then additionally my participation in some experience connected to the team. We have a very large jar where we have colored sand, and so each time we have someone that dies, we talk about them, and then we add their sand and so that we could see the colored layers of all of the people that, you know, we've taken care of who have died. And they become a part of that. And they continue to exist in this space.

Sarah Dabagh: 35:14

Is that sand on display?

Kristen O'Grady: 35:16

It is just in a spot for our team. It's not out where everyone can see it in the-- it doesn't go away, like it stays out, it's in the meeting room space. So it's ready for, you know, when we need it. But also, we were afraid to move it because if you've ever done like sand art, right, all the colors wouldn't mix together!

Sarah Dabagh: 35:35

There's something really beautiful about the colors of the layers of the sand, that it really depends how much you know about that item and that totem, to sort of define how meaningful that is to you and how you recognize it in that space. But as a standalone item, outside of the knowledge of the ritual that created it, it sounds like a beautiful item.

Kristen O'Grady: 35:54

And then it becomes something that's just for the people who are have been participants in this right. And so as you said, it's kind of nondescript, outside or not nondescript, but it is kind of a piece of art, but it has the meaning because we have assigned it the meaning.

Daniel Eison: 36:10

And isn't that such an important thing that rituals do, they ascribe meaning for the participants in them?

Sarah Dabagh: 36:17

The funny thing about recording this and thinking about this is now I look at everything and I say,"Is this ritual?" Is rounds ritual, right? Meeting every morning and rounding, is that ritual?

Daniel Eison: 36:27

Yeah.

Kristen O'Grady: 36:28

Oh, yeah.

Daniel Eison: 36:28

Rounding-- rounding is definitely a ritual.

Sarah Dabagh: 36:30

Or is printing my list in the morning and, you know, stapling it, is that my ritual? Or is that like you said, Dan, just something that we do?

Kristen O'Grady: 36:38

It could be both? Right? I mean, is it something that you do that prepares you for transitioning from being in your home life to being in the space where you're ready to care for other people? I don't know. I'm sure not everybody does the same thing. When they get there. Maybe you have your own way of transitioning your identities and that way,

Sarah Dabagh: 36:58

No it fits, transitioning from one space to another. Yeah, with my stapler

Caitlin Scanlon: 37:03

With your stapler.

Sarah Dabagh: 37:08

Dan, I think one of the things this episode has done to me is make me look at every single thing I do in my life that has any sort of rhythm to it and ask, is this a ritual? Sort of like that book - Are you my mommy? Is this a ritual?

Daniel Eison: 37:23

Yeah, absolutely. And I think the answer is yes, a lot of the time. Rituals are everywhere. It may seem odd to think of what we do as ritual, because we are operating in a very scientific, biomedical framework. Ritual seems like something that is done elsewhere, by other kinds of practitioners, not by doctors in hospitals. But I think when you start to look through the lens of ritual, you see that it actually is everywhere. It's in everything we do. And I think particularly maybe in palliative care, where there is this constant melding of the mundane and the sacred, the professional and the personal, the rational and the emotional, I think it highlights the ritualistic nature of what we're doing. And I think as with many of the things that we do in palliative care, the key may not be to decide whether things are rituals or not, but to recognize the ritualistic elements of all the things we do, and do them consciously and thoughtfully.

Sarah Dabagh: 38:33

And to have them in our repertoire for when we need that choreographed motion of how to take the next step forward. 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 the email on our website. This has been PediPal. We'll see you next month. And we need to invent a new word like "liminality" that Sarah can Google while we're mid-conversation because she's never heard it before. We can invent a new word for named ritual and unnamed ritual

Daniel Eison: 39:15

Or we can do a better job reading the anthropology literature, because I'm sure they've invented these words already and we just don't know...

Sarah Dabagh: 39:21

There's someone listening to the podcast, arms up, upset, "No, you guys, there is a word!"

Daniel Eison: 39:28

Yeah, guaranteed. We are very willing to accept hate mail from any and all anthropologists who are listening to this episode. Please, please correct us.