PediPal

Episode 9: Resonance

November 30, 2021 PediPal Season 1 Episode 9
Episode 9: Resonance
PediPal
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PediPal
Episode 9: Resonance
Nov 30, 2021 Season 1 Episode 9
PediPal

Music therapy, art therapy, child life, and pediatric palliative care resonate with each other in a lot of important ways. In this episode, Dan and Sarah chat with.... Dan and Sarah?! Yep, that's music therapist Dan Stafford and art therapist and child life specialist Sarah Yazdian Rubin. The Dans and Sarahs discuss creativity and loss, the roles expressive therapies can play in pediatric palliative care, and just how similar our respective fields can be. 

Show Notes Transcript

Music therapy, art therapy, child life, and pediatric palliative care resonate with each other in a lot of important ways. In this episode, Dan and Sarah chat with.... Dan and Sarah?! Yep, that's music therapist Dan Stafford and art therapist and child life specialist Sarah Yazdian Rubin. The Dans and Sarahs discuss creativity and loss, the roles expressive therapies can play in pediatric palliative care, and just how similar our respective fields can be. 

Sarah Dabagh  0:02  
Hi, this is Sarah 

Daniel Eison 
And this is Dan. 

Sarah Dabagh
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 views in this podcast are ours alone and do not represent our respective organizations and do not constitute medical advice.

Daniel Eison  0:19  
If you thought that because this was an episode on music therapy, that you were going to get a musical introduction like GeriPal, you are sorely mistaken.

Sarah Dabagh  0:29  
We've updated the intro so that we are no longer new. And unfortunately, neither is that joke. It's probably the last GeriPal joke, we're going to be allowed to make.

Daniel Eison  0:37  
That is definitely not the last GeriPal joke we're gonna make. Let's get into this episode. We have two wonderful guests.

Sarah Dabagh  0:45  
And as a fair warning to our listeners, our guests are named Dan and Sarah. So we're going to do our best to keep this as clear and understandable as possible.

Dan Stafford  0:56  
Hi, I'm Daniel Stafford. I'm a music therapist at Lucile Packard Children's Hospital for Stanford.

Sarah Yazdian  1:04  
Hi, I'm Sarah Yazdian Rubin. I'm an art therapist and a child life specialist currently working in private practice in Nashville, Tennessee.

Sarah Dabagh  1:13  
How did you find yourself in these careers

Dan Stafford  1:15  
In college I was in an acapella group. And I started learning how to play guitar. I was studying communications. And then I switched to psychology because I knew I liked people. I knew I liked helping people. And I knew I liked kind of understanding the way that people think and the way that people work the way that people feel. But music was always something separate from my studies. Music was always my passion. After I graduated, I kind of went the music route. I think at a point it didn't feel like fulfilling to me and I wanted to do something else and go deeper. And it took like two people reading an article about music therapy and sharing it with me. It was like a snap of a finger lightbulb or whatever you want to call it. It was just what I knew I needed to be doing with my life. I love working in a hospital being a source of support for patients and families. I have a medical background in my family -  my dad is a neonatologist, my mom's a physical therapist. So as always around that kind of stuff when I was growing up.

Sarah Yazdian  2:14  
What you just said about how you knew that's what you want to do with your life. I remember I also went to NYU for art therapy for graduate school and one of the teachers there, Marygrace Berberian, and she was a professor, who's still is a professor there now. But she said to a lot of us, you know, when you discover like art therapy, music therapy, for a lot of people, it is that like snap, it's that light bulb, because at least how I was raised and taught, you know, in my own family, and also just from culture and society, you like art, you should be an artist, you know, there aren't that many art based jobs that you know, are introduced to a young person aside from like being an artist or be an architect. So when I discovered art therapy, and then when I actually was in graduate school, when I was actually doing art therapy, it felt just like so perfect. I didn't know I wanted to be an art therapist till after graduating, I went to Tulane undergrad. But I was really I gravitated towards living in New Orleans, I think because there was like a very strong art and music scene. So just enjoyed it from that perspective, as well. I remember writing a paper at Tulane about art in the Holocaust. I think that was the first time I really started to analyze art and look at art in a different way. I think a lot of art therapists would say after going through art therapy school, you don't look at art the same way. You know, we look at art in a very different way because we can analyze the art and we can think about the artists and the meaning that that artists attributed to their work. Unlike you, Dan, I have no doctors in my family. I've always been very fearful of doctors myself didn't like going to the doctor as a young person and decided to apply to Mount Sinai because I was so afraid of it. And I was like, you know what, I have to do this because this really scares me and I'm probably just never going to do this. So let me just check this off my list and do this as my internship and I absolutely loved it. I definitely overcame some of my own fears, I think being in the setting, but you know, working my first internship was in pediatric hematology oncology, the outpatient clinic and you know, I fell in love with the children. I loved working with doctors working with nurses, that's really where I decided to pursue additional training and Child Life because I felt that you know, having an increased knowledge and child development really what helped me out in that setting in particular, so it definitely liked to incorporate other modalities in addition to art I love you know, incorporating some music, some play, storytelling, I really look at art and creative experiences like a very broad term. And I think in palliative care specifically, there are times where you know, we have to be creative. There are a lot of times when people don't want to create art and so think the art therapist or music therapist is tasked with finding other ways to connect and kind of extract meaning through creative experience,

Daniel Eison  5:07  
You mentioned how you grew up not liking doctors and being afraid of doctors, and I wonder if that has helped, as you have taken care of children who tend to be afraid of doctors, and not like doctors, as your own experience help sort of inspire you in ways to work with them.

Sarah Yazdian  5:23  
Yeah, I mean, I think just the hospital is a culture. And for many people who don't have illness, kind of don't experience illness, personally, it's very foreign, you know, you suddenly receive a diagnosis, you're in the hospital. And it's as if you stepped on a different planet, there's a complete new vocabulary, you have to learn there are people in power, essentially, that come into your room and do things to you. And you really don't have a say as to what these people are doing to you. And one thing that I really think about when I enter a patient's room in the hospital is this person has the choice, whether or not they want to interact with me and whether they want to accept my services. And I think that's a really big part of the art therapists and music therapists intervention is just presenting the choice when you walk into the room, do you want to work with me right now and re instilling that choice, I think is so it's just the foundation of things, so much freedom and so much connection between a patient and a provider, like an art therapist.

Sarah Dabagh  6:24  
You both talked about meaning making it pulling it out of encounters. And I'm wondering if there are themes that are really, really common that you come across. I'm hearing control and choice is a big theme already that you already have on your mind when you're walking into a room. But I'm wondering if there are other things that come up a lot in your interactions with these children.

Dan Stafford  6:46  
I see a lot of expressions of gratitude for the people who mean the most to them. My experiences with palliative care, a lot of the times have been with babies who can't verbally communicate with you. So parents expressing their love for a child parents creating something to express themselves in the midst of an experience, which is taking away something from them. It's like an interesting juxtaposition, right? Creativity in the midst of an ending, so to speak, being creative as a way to experience something that you're going through that feels almost like the opposite of creativity, right? An illness is kind of like something that can really take your sense of normality, it can just take your sense of a typical life and change it dramatically. And I love what you said Sarah about giving the choice giving the control back to them because they don't really have choice anywhere in what's going on with them. So it's an honor to be invited into these spaces.

Sarah Yazdian  7:47  
Creativity mitigates loss, whether a person is dying, or receiving the diagnosis and becoming well and healing. Now, there's still so much loss and illness experience. And one thing that I love about art therapy and music therapy and anything creative is that it mitigates all that is taken away, and it kind of almost like creates a different playing field. And I think that is such an interesting experience for the patient and also for providers to witness. I mean, I remember there was a patient, I had met the patient, the family right after a palliative extubation. It was expected that he was going to pass away soon after he actually survived for like two and a half or three weeks. And so it was really an excruciating time for the family because they were expecting something different. And they really just wanted to do something at the bedside and not focus on the vitals. And so I think for this family in particular, we did art therapy every morning. Not only did it become a ritual for them, but they created so many things about him that it, it felt like all of us knew him just from all the stories that were being told while they were creating art and none of us had ever met the patient when he was in a conscious state. So you mentioned before choice control, I think creativity is definitely another, you know, theme and connection. I mean, a lot of people especially who are people who are chronically ill in the hospital for a long time, they're isolated and craving that connection. And even if it's just a conversation with a non medical person on the team, I think that can be very life giving depending on what is shared in the conversation. So I think just yeah, sharing oneself in different ways. That patient identity is something that's very difficult, and a lot of people don't want to have that identity of a patient and so to help elevate other parts of identity, that are non illness related, I think can be very helpful.

Sarah Dabagh  9:44  
I've been taking notes as you've been talking about illness as the opposite of creativity, but then also creativity and the art of creating something as an antithesis to loss - melody, memory. Physical art is bringing something into the world to balance that sense. I think that's really beautiful, when you put it that way,

Sarah Yazdian  10:02  
It's amazing to see you know, and then in the palliative care space, you know, and someone knows that they're going to die, to create something for a loved one knowing that, that is the thing that will live on. There's a concept called legacy building, which I think it was familiar with. And that's like a very real thing with art and music, you know, creating pieces of music or pieces of art specifically, for a person that can live on that can be preserved, shared with generations to come, that's very meaningful.

Dan Stafford  10:33  
Sometimes a person or a family is not in the space, they're not physically healthy enough to want to create or even have the desire to create. But the cool thing about music is just listening to music, within that space, listening to something that just totally changes the aesthetic of the environment that they're in, is something that can be really, really impactful. Being in a hospital is a very traumatic experience for the families, the patients that are involved with it, but bringing their preferred music into it. Or even bringing a music therapist therapeutic intuition of how they can kind of shape this environment with sound is something that I've seen help patients a lot just make a more palatable environment.

Sarah Yazdian  11:19  
Similarly, you know, an art therapist will think about more receptive methods. So viewing a piece of artwork or even viewing images of nature, things like this to help with the relaxation response. I think a lot of music therapists and art therapists incorporate mindfulness and meditation type of interventions alongside music and art. So that can be really helpful too. Yeah, definitely like an ICU settings. And just in a hospital setting in general, I think about the whole person, I think about the whole person's senses and kind of help know, when someone's hospitalized, their senses can kind of become deprived, especially over time, you know, and you think of the hospital environment as typically a sterile environment. So we can kind of engage the senses in pleasurable ways, versus ones that evoke pain, which oftentimes that is what is happening in the hospital environment. Again, it's kind of mitigating the negative experiences with positive ones, because the hospital setting doesn't have a lot of privacy. And there are lots of beeping noises. And, you know, people talking in the hallways, we think about that aspect, too. So just to link back to your saying, Dan about like the environmental piece.

Sarah Dabagh  12:33  
It's funny, you both touched on how on the healing the healing environment is.

Sarah Yazdian  12:39  
I think it's kind of another concrete example of how an art therapist would maybe add a different dimension, I was working with a child who had cancer, and she was losing her hair from chemotherapy and decided to shave it off. And she was this kind of tough girl and everyone thought that she was handling it so well. And the art that she kept on creating were these weeping willow trees, she always would draw the trunk and then the weeping willow part of the tree like the leaves, and that was something that she spent like 30 minutes on, and she would just repetitively go over and over almost as if she was like brushing her hair, you know, me watching her create this weeping willow image over and over again. And also having the image to present to the team indicated to the team that this wasn't just some tough girl who wanted to shave her head and you know, kind of move on. And she really was grieving the loss of her hair. And as a teenage girl, that was a really big part of her identity, too. She loved to dye her hair. And it was a way that she expressed herself and that was kind of taken away from her. Bringing artwork to rounds, bringing song music, providing more information to the team can just be really powerful and understanding the kind of a more whole experience of the patient.

Daniel Eison  13:49  
It's within the grand tradition of art to speak truth, and often speak hidden truths or speak truth to power, whether that's the power of the medical team, the medical institution, or the power of illness, the power of death. And now I'm thinking John Keats, truth is beauty, beauty, truth and all that but I'm not gonna go there. A lot of the things that you're saying about the perceptions of the field and the way it interacts with palliative care and medical care more generally, are also reminding me of our colleagues in spiritual care. And one of the things that I've heard from the chaplain who trained me in fellowship was that chaplains are spiritual specialists. But everyone on the team should be a spiritual generalist. Do you think there's something similar in your fields, where as a physician, I should learn something or be versed in techniques or knowledge or approaches that would make me something of like a generalist or at least be able to identify like, Oh, this is when I need to call Child Life or this is when I need to call music therapy. Can I walk into the room playing with a little bit of clay? Introduce myself and hand it to the patient and see what happens, or is that crossing the line?

Sarah Yazdian  15:04  
I don't think art therapists own art. And music therapists don't own music. You know, I love when people use art to connect in a way that is within their scope of practice. And I, so I don't own art, I think that's totally cool for you to do. But there is a time when, of course, it feels out of scope. There are ways that doctors and music therapists even can use art to connect with and support their patients in a way that is totally safe. But of course, you know, there are certain things that do come up in art therapy that, of course, is handled differently by an art therapist and a doctor or a music therapist or whoever. We don't own the tools that we use, we just use them in a different way.

Sarah Dabagh  15:51  
Is there a time where we, as the medical team shouldn't consult art therapy?

Dan Stafford  15:57  
I've had people say, like, Dan, like, everybody could benefit from your services, you know, so we have to learn our own ways to prioritize, but for the not to refer music therapy or not send a console for music therapy or art therapy. I mean, because they look bored, and you want them to play, right, like boredom are not appropriate. 

Sarah Yazdian  16:17  
Yeah, I do think anyone who wants to engage in therapy should be able to and like in a perfect world, of course, there's like enough music therapists and art therapists or we could see everyone on the referral list and all this. For me, it usually comes down to: How was the person coping? You know, what are the supports in that patient's life? Again, like boredom, referral is something that is definitely like a no, like, there's that that's No, no, that there's no one else in the hospital and that person's bored. If I have no one else to see, that person is going to get art therapy, no, kind of back down to like time and we were saying down like individual patient loads. But as I mentioned before, kind of crossing off the art before therapist or music or therapist, any person that you think would really benefit from seeing a therapist. So someone who knew someone who's really struggling with pain, but is not responding to pain medication. So maybe there's a total pain picture. So thinking about, okay, how can an art therapist or music therapist support some expression of the emotional or psychological pain for that person? I think total pain, like when I learned about total pain, and palliative care, that was like a really great way for me to explain to doctors, people that I think would really benefit from art therapy, or music therapy, people suffering from total pain.

Dan Stafford  17:37  
I think we should be the ones who go in and assess whether this will be right for the patient or not, whether this is gonna benefit them within the hospital, but then providers being okay with if that referral comes in. And the creative arts therapist says, you know, says a soft, no, it's okay. It's based on us prioritizing patient care and other places. And based on a very intentional assessment, as well.

Sarah Dabagh  18:04  
I'm heartened to hear that there is an avenue for you to bring that truth to the medical team, that they are listening to you that they are inviting you to IDT or to rounds and really seeking that insider truth that you bring. Or maybe maybe we don't. And maybe we could be better about that.

Dan Stafford  18:20  
You really have to make your voice known if you want to get these things across. It's on us, I think, as creative arts therapists to really advocate for not just their physical health, but also their emotional health, their spiritual and creative health as well. If we want something known, I think the opportunity to be a part of those discussions. We have to really make it known?

Sarah Yazdian  18:47  
Yeah, I think a big part too, is just building your own relationship within the team so that people learn about you and respect what you do you see what you're doing firsthand. Usually people want to learn more. Art therapists, music therapists definitely need an elevator pitch. Because most people don't know what we do. Most people have a lot of misconceptions of what we do. We're just the art lady, the play-doh lady, The Music Man. And so to be able to speak very concisely about the evidence base, because that's what's valued, of course, in this community, but also just our knowledge of psychology, how we also weave in human development theory. I mean, all of that is a part of our work. And so communicating that we're more than just the arts and crafts lady in my case, which of course, I'm not knocking. Now, there's a lot of value in doing that, too. I mean, especially if the person wants to do that, then of course, they should do that.

Daniel Eison  19:39  
As you're talking about this, I'm having this moment of recognition, where I'm thinking palliative care, also has to have an elevator pitch. And it's also got so many misconceptions. Yeah, everyone thinks, oh, you're just the death team. You're just the Grim Reaper. And we also, you know, so I think there's a sort of kinship there. Yeah. And we have We talk a lot within our field about the pitch that we give, right. And we have to be able to walk into the patient's room and give a pitch. This is who we are, this is what we do. This is why we're here. And we have to be able to walk into the chair of the division or the C suite and say, This is who we are, this is what we do. And this is why you should pay us to do it. And we have to go to our colleagues and say, This is who we are. This is why you should consult us when you are pitching what you do, what does that pitch look like for families versus providers versus hospital administration?

Sarah Yazdian  20:35  
Yes, I mean, everything just said: The same. We do our pitches, depending on who is the audience, I think, you know, for families, know, some people who've been the hospital for a long time, kind of know the deal. But that initial introduction, you know, I'm Sarah, I'm the art therapist and Child Life specialist on the team. My job is to bring our materials if you want them, but really, I'm a listening ear for you, you know, we can connect over art or just share stories, I'm very, of course unoffensive and open, entering the room, I don't really want to dictate, you know, what we're doing, I want the patient to reach inside of themselves and discover something that they want to do. And so that's how I approach patients and families. Of course, if I'm referred for a specific reason, like pain management, I'll tailor that pitch to say there are a lot of art based interventions we can do that can help with pain. Are you interested in learning about these. So I think there's also this idea that everyone wants to do art all the time. And like, there are people that really don't want to create at the bedside. And that's okay. I think for children, it's like art in play. It's like, that's the first language of a child in music to, you know, these play experiences. That's how children understand the world and process their life events. And so for children, it's much easier to enter a child's room with art materials or musical instruments, they kind of just know what to do with them. And they want to, you know, typically engage with the materials. And sometimes there's a little bit more convincing that happens on adult units.

Dan Stafford  22:06  
I had this patient one time, who was really sad, she had to have a VAD device. And she was recovering from the surgery where she has a just an entirely new thing that she has to carry around with her all the time. Now. It's just life changing, it changes your body a little bit, you have this extra thing that wasn't there before she was having a really hard time came in gave my spiel, which was you know, Hi, I'm Dan. I'm a music therapist here for the cardiac ICU. So we're another layer of support here at the hospital, we work alongside the medical team to assist with any goals that you might have in this hospital. But the unique way in which we do it is we use music, starting that way, it kind of bringing a kinder face to the team, or just a different experience that is still medical team based. But like even this girl was too sad and upset in this moment to want to say yes, to music, but I think I I just told her that music, even if you're you're sad right now, right? Music is a space where you can be sad. And we can do something with that sadness and express that sadness in a different way. And she was like, slowly like, okay, by the end of the session, we were using the song, thank you next by Ariana Grande, to list out the things she's thankful for in life, right? And so it just kind of accepted her sadness. But then I don't want to say turned it around. Because that's not the goal to necessarily like turn around your sadness, but integrated gratitude within the sad experience that she's going through.

Sarah Yazdian  23:42  
Sounds like you helped her give shape to the sadness. Yeah, that's like a lot of times what music and what art can do. I mean, we're not, you know, ever trying to correct feelings. We're trying to create ways for people to identify their feelings and hold their feelings and express their feelings, and then maybe reflect on their feelings when they hear their song again, or look at their piece of art. Again, that's just another kind of big theme of what we do kind of giving shape to unshapeable aspects of illness. And you know, a lot of times like people always say art and music picks up when words fail. And I think a lot of times, especially when an emotion is so raw and experience is so new, people don't have the words to express what they're feeling. And so borrowing Ariana Grande's words, are using Model Magic or sculpty to just express anger in how one grasps the material. I mean, these are all kind of like the baby steps in one's own personal journey in finding the words for their experience. And so kind of what you were saying, Dan about when you enter a patient's space and you find little ways to connect. One way that I do it sometimes a little magic is basically like a playdough. It's kind of interesting. It's a little bit different novel And so sometimes I'll just go in actually playing with an art material and break off a little bit, give it to the child or give it to whoever is a way to just, again, invite a baby step in doing something different creating something, it's really important for us to enter with no expectations. And a lot of times, those are the sessions where, you know, maybe in dance case, you know, a song was created, or whatever it is. So that's another important piece to just the attitude that we have, as providers when we enter this space of zero expectations, letting the patient be who they are in that moment, and us providing some creative tools for them to express who they are in that moment.

Dan Stafford  25:39  
Same thing with listening, we can just go on YouTube, listen to a song that you really like, like, tell me more about the music that you like, I think about it, like, what does that look like to a provider coming in who doesn't understand music or art therapy, it can look like play, it can look like you're just listening to music, right? But there's a much deeper process that's going on. It's a facilitation and a fostering of a relationship that's gonna set them up to just allow this deep well of creativity to flourish while they're in the hospital.

Sarah Yazdian  26:09  
I think that's why there's a lot of misconceptions about our field because someone will come in and say, Oh, they're just playing with Playdough. Oh, they're just looking at a video on YouTube. Like, the just just doing this. Yeah, there is a lot of thought and intention behind all of the things that we're doing.

Sarah Dabagh  26:23  
The biggest message I think I'm hearing for our listeners, it's just the sheer intentionality of entering the room. The information you gather, the information you share, and the opportunities you provide, even if it's the opportunity for choice and you don't do art or music therapy with that patient.

Sarah Yazdian  26:40  
Yeah, people always say like, what's a music therapist? What's an art therapist, I always say, cross off the music part, cross off the art, you know, we're therapists, we have different tools. Of course, we talk to our patients to like traditional therapists who do traditional verbal psychotherapy, but we have different tools. We have art and music and storytelling and other creative avenues to help people express themselves in this space.

[Musical Interlude]

Daniel Eison  27:08  
So Sarah, what are your take home points from this episode?

Sarah Dabagh  27:10  
One of my main take homes is that we can do an episode with two Dans and two Sarahs and it's not that confusing.

Daniel Eison  27:17  
We'll see how confused our listeners are, though. 

Sarah Dabagh  27:21  
But I think really the biggest thing that struck me and we named it a couple of times, it's just that resonance with palliative care. I think one of the tragedies of the audio format, when we recorded video, is that all our listeners missed the big grin on both of our faces when Dan said that he introduces himself as an extra layer of support.

Daniel Eison  27:41  
I think I gave a big double thumbs up at that point, too. Yeah, it just kept being things that they said that were like, oh, yeah, that's what we feel in palliative care too.

Sarah Dabagh  27:52  
Yeah, it was wonderful to hear them talk about their role in pain management, and not boredom management. I thought that was a important note for our listeners.

Daniel Eison  28:01  
Absolutely. The other thing that I thought, and I think this may be this was a misconception I had when I thought about art therapy and music therapy, I often thought of it as something that was just helping patients to create, create meaning or create legacy, or process their emotions. But there's also this other part about the therapist potentially creating an environment that is healing and is therapeutic and is giving shape to the emotions that the patient is having, without the patient even necessarily having to create anything themselves. It's also something that, again, resonates with palliative care, because a lot of what we do is about creating an environment. Think about when we walk into a family meeting, and we're rearranging chairs and we're placing boxes of tissues strategically and we're turning on lights and off lights and things like that. It is all about environment in some ways.

Sarah Dabagh  28:56  
And I think the big headline word is still "intentionality."

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.