Music Therapy in Pediatric Palliative Care with Maggie James

Lukas: Where did you like to play as a child? I ask this question a lot because childhood memories shape us into the people we become. Welcome to Play It Forward, a Wearthy podcast. I'm your host Lukas Ritson. Thanks so much for joining me.

I talk a lot about play. I'm a dad, I'm a husband, I'm an educator, and I'm a playground designer. So I want to gather some of my favorite people who are advocates of children and nature and create a space to have an honest conversation about getting more kids outside. The power of play is very often underestimated, and I think we all need a little more play in our lives.

Our next guest is someone I had the honor of standing alongside on the TEDx stage in Brisbane earlier this year. She is a music therapist with 18 years experience in pediatric healthcare and has worked intensively in intensive care and palliative care. She believes that music provides a meaningful connection with a dying child, and the death of the child should be one of dignity and love. A TEDx talk named "Dying Young in the Arms of Music" moved many people to tears—a must watch that we'll put in the show notes. Please welcome onto the Wearthy podcast the incredible, loving, empathetic Maggie James.

Maggie: Hello Lukas! Thanks for joining us all the way from Montreal.

Lukas: Yes, yes, definitely won't miss it. Well, we'll start off with how we start all our podcasts—where did you like to play as a child?

Maggie: My favorite area to explore or play, and my earliest memory about playing with other kids or going out to play—it's a very unusual area. It's not a playground, it's not a park, but it's four corridors that are communal corridors within the apartment complex that I lived in. So when I was little, we lived in an apartment complex in Hong Kong that had more than hundreds of units, and each floor has four corridors shared by all apartments. And all the kids every afternoon would come out together and hang out and run around and chase each other along four corridors. There were no play equipment—it's us kids with our imagination. And still today, it's still my absolute favorite memories.

Lukas: That's such a unique experience. How was that play perceived by the other tenants?

Maggie: Yeah, you do get a lot of moms and dads shouting out "Come on, it's dinner time!" or "Don't chase our kids, why are you crying?" There's a lot of shouting, but that's just part of kids. But also, on our floor there were 20 other families, so all their parents look after each other's kids. If my mum and dad were running late coming home and grandma and grandad weren't ready for dinner, another mum might call out "Maggie, you want dinner tonight? Here, I'll call your mom and let her know." And then you'd just go to someone else for dinner until bath time, then your mum would drag you back. It's fantastic, it's wonderful—the true village to raise a child.

Lukas: Yes, definitely. And what did your journey look like from the corridors of Hong Kong to being in Australia to finding yourself in the field of music therapy?

Maggie: Well, I think having a Chinese background, play looks very different. I didn't have that much toys when I was little. I was actually talking to my husband tonight—when I was young, looking in our children's playroom there's loads of toys, and I was saying to him that when I was little I only had one tri-bike, that's all I had. But looking back, when you only have so minimal, you have to be creative. And I think that creativity started from when I was young because you didn't have much. So you use your imagination—tapping on the stairs, on the bars of the rail, jumping up and down, dancing along to songs that you make up. I guess that's probably paved the way to how I became a music therapist and probably where I got my creativity from.

Lukas: So you followed that path of music from an early age all the way through your studies?

Maggie: Definitely. I'm very blessed that from a very young age my parents could see that I have a love, or you can also say a gift, of music. My parents blessed me with piano lessons from the age of two. So from a very young age I just loved making up songs and I love using songs to make people happy. That's something innate in me—using music to connect.

Throughout the years when I grew up, I've always had music in my life—learning piano, flute, singing, guitar, saxophone, violin—all those instruments I like to give a go. And in university, when I had to choose what I want to do, within music there's not that many options. I was trying to pick between being a performer, being a pianist, or a music teacher. In the first year of university I still didn't know about music therapy, so I went into the path of being a pianist. I was doing lots of long hours of playing and I felt very disconnected from the world. When I was little it's all about using music to connect, so I felt that there was something missing—a huge component of my meaning of using music was gone.

So I looked into what career I could do that would allow me to use my tool, which is music, to connect. I explored the most typical path—music educator. Yes you can connect, but connect through teaching didn't sit right with me. So I came across music therapy, and I remember I spent a month with a music therapist volunteering my time to be her helper. I watched the power of music through her—how she used music to connect with children that are intellectually disabled or physically disabled. I saw these children go from being very dysregulated and frustrated sitting in a group to very calm as well as joyful. It's like there was a key that opened their door, and all the potential came out. Those that were not talking started singing and tapping along to the beat of the music. I was just fascinated, and from then on I decided that I've got to make this my lifelong career. So I went and studied music therapy and then got my first job at the Royal Children's Hospital in Queensland, which is now the Queensland Children's Hospital.

Lukas: That's amazing. And for those listeners going, "Well, you're going on about music therapy, what is music therapy?" For those listeners that don't know?

Maggie: That's a very good question. Music therapy is basically using music as a tool that therapeutically addresses specific emotional, physical, psychological, and social goals. What I mean by that is music becomes our vehicle. Any registered music therapist would have completed their master's study in Australia or in other countries. Once you receive the referral or a child that you need to meet, you start to do an assessment to find out how can we use music to enhance their areas that need to be improved.

Some of them could be physical—I could be talking about strengthening their muscles, fine motor skills, using their hands. If I'm talking about young children, using their hands to grasp onto the shaker and using simple music playing to strengthen each of their muscle groups in their hands. Or it can be communication goals—for example, children with a speech impairment, we use singing, we use humming, we use anything that activates our vocal cords through music—making clicking sounds, anything that creates an opportunity for musical play and to achieve their vocal output. That's how we maximize the communication goals.

So music therapy is not focusing on "I'm going to teach them how to count"—it's not so much about the educational outcome, but more about the developmental, emotional, and social outcomes.

Lukas: Yeah, for me as an overview, it seems like it's about creating a being state, not so much a doing state.

Maggie: Yes, the process. And it's not something that's new age for those listeners—it's not something that's just recent. This has been around, with the first research coming out in the 1800s, and even further back. It's even mentioned in the Bible about music soothing the soul of stress and anxiety.

Lukas: That's right. It's been around a long time, and I think everyone innately knows that music soothes. But what's happening now? Why are we so drawn to it?

Maggie: I guess like you said, it's not new, but it's also something that people can naturally feel at ease when you listen to music. You've got this intuition that music equals good. And in the age now that we're trying to explore holistic therapy input—because I want to avoid the word "alternative" because I don't believe music therapy is alternative, it's more holistic approach—and there are lots of scientific evidence as well.

I think the reason why there's so much more awareness, also with social media, is that it brings a lot of people looking for ways that they can actually make themselves feel good, that they can do at home, at their fingertips. I love your question "what is music therapy" because I think that what we do every day is using music as a form of therapy, which is different to music therapy. And I am a big believer that using music as a form of therapy is as important as music therapy itself. When I feel stressed, I also put on some music and make myself feel more at ease—and to me that is using music to relax, it's not music therapy.

For all the listeners out there, if you feel stressed, definitely listen to music. But if you feel like listening to music doesn't really work, a music therapist can analyze what sort of music you're listening to. There's research that recently came out looking into teenagers listening to music when they feel sad. They analyzed what sort of music they're listening to. The music that they're listening to that's positive is more likely to lift the mood, decrease their heart rate, they feel more settled, improve their oxygen saturation, and their blood circulation opens up. Whereas when they're listening to more sad music including the lyrics, their physical status decreases—their oxygen saturation decreases and their heart rates increase in a way that they feel anxious. So it's very important that it's not just music—it's what type of music as well.

Lukas: Yeah, and there's that tendency for people to leverage it in both directions, as you mentioned. Like you're feeling down and you're like, "Okay, I'm going to wallow in this, I'm going to put on that sadness and really go deep on it." And then it's only through going through that transition and acknowledging it that you can come out the other side for some people—so maybe it can be like both sides of the scale.

And I think we see in society this intrinsic motivation to move towards music. Like in the gym this morning, I looked around with this podcast in mind, and like 99% of people had headphones in. And I had that brief panic as I went to go into the gym this morning and realized my headphones weren't there, and then I'd have to listen to their amped up gym music, and I was like, "I'm not sure I can go." It was really interesting because I've been reading about music therapy and then going okay, just observe where it is in my life, and that was a prime example just this morning—how I was so turned off by the thought of going in and being exposed to music that just did not align with me and where I'm at in my journey. So it can really push and pull you from a very emotional level.

So there's music therapy from the emotional and the physical. And I encourage anyone to jump online and just Google like "music therapy results" or "music therapy facts" and you can see video footage of people performing music with children as therapy and seeing monumental turnarounds in children—from coming out of comas to doing rehabilitation. And you can physically see the children—like they're not engaged at all, the music starts, and then they get that smile on their face, they get that motivation to move towards that music, which is phenomenal.

But you've also taken it to another realm, and you specialize, as I mentioned in the introduction, in intensive care and palliative care. So for the listeners, can you break down how you found yourself in that field and what it's all about?

Maggie: I became a music therapist back 18 years ago, and when I first started, I was working in the rehabilitation unit, working mostly with children with acquired brain injury. With the amazing medical technology and treatment methods at the moment, most children would be able to survive, but I've also met many that were not able to survive. And through working with those children during those times, I really—this may sound weird—but I fell in love with the opportunities and the privilege in working with children that were dying.

I really felt connected, and I really felt there weren't many opportunities for these children to experience joy and fun before they die. So I really felt a strong pull into this area. And that's how I started. I met with the director of intensive care back then at the Royal Children's Hospital and proposed the idea of working with children in intensive care, especially in supporting children who are in palliative care—children whether they are born with life-limiting conditions, or whether suddenly unfortunately with an illness or accident they were not expected to live for very long. And I was very lucky that I was granted three years funding to work in this area, and that was back in 2009 I think. And since then it was going and going nonstop.

And also through that journey, I also went and studied neurologic music therapy and became a neurologic music therapist. Because obviously, like you said, we know that there's something great and fun and lovely—well, it's more than that. I believe that there must be something happening in the brain area. So I went to study and explore neurologically how does that work, especially when a brain is dying, because a lot of the areas in the brain would slowly shut down. Well, what is the role of music in our brain then, especially when a child's brain is shutting down? And all those elements just fascinated me, and that's how I started my journey and became a pediatric palliative care music therapist.

Lukas: And during your TED talk—as we said, we'll put it in the notes—it wasn't just the child that was a recipient of this music therapy. You've got some great examples of this really helping parents during this traumatic time as well.

Maggie: Obviously, a child always will come with the family unit. So when you work with a child, you can't separate the parents—and I would never want to separate the parents anyway. When I'm delivering music therapy, when I'm in the sessions doing music therapy with the child, I would always involve and invite the parents to be part of it. Because at the end of the day, music therapy is not just for the child, it's for the family. What the child needs the most is the love of their parents.

So it is about using music to connect and bond everyone that's in the room, whether it's one last time or whether it's a very long goodbye. Because some children, when they become palliative, it can be a very long journey as well. One of the longest journeys that I have had with a child was 10 years—he became palliative when he was one, and he was very lucky that he was able to enjoy life and pass away when he was 10. So it could be a very long journey. It's about using music to build memories with the parents and the child.

Lukas: And what does that practice look like? What's the practice that you're performing?

Maggie: Usually once when we meet a child with the parents, we ask them what kind of music they like to listen to. Because like you said, when you go to the gym and it doesn't align with what you love, you feel disconnected, you don't want any part of it anyway. So we always ask the parents what their child likes to listen to—whether it's Paw Patrol music or whether it's Wiggles, or you know, some really trick us by telling us that they love AC/DC, and you just go, "Okay, yep, I'll try to do that, I'll try to bring AC/DC into this." It can feel extremely inappropriate at times, especially a lot of the time I would be singing before the child takes their last breath, and you just feel highly inappropriate singing "Ice Ice Baby"—but that's what they want.

And it's not about me, it's about the parent and the child. So what that looks like is usually I meet the patient and the parents—or grandparents, whoever wants to be part of it can come in. In the intensive care unit, most of my patients are not conscious. They will be on life support with breathing tubes and everything attached to them. So I often bring my guitar and some small instruments in case some of my patients may still be aware and awake, then they can join in if they want.

After we know and work out what sort of music the parents and the child usually like to listen to, we often start with checking with the medical team as to what direction we're heading. So some days when I go into a patient's room, the medical team might give me a hint that, "You know, today's a good day, little baby Johnny is in good shape and it looks like we're having a happy day, so let's do something fun." Then I would know that the music that I bring—when I say "bring" is when I sing and play on my guitar—would be a bit more upbeat, a bit more playful. It's about using music to provide an opportunity to play, to have fun.

And for older kids like teenagers, sometimes they'll be like, "Okay, we've got the breathing tube out, we're talking today, so do you want to write a song together? Do you want to record a song, make a CD?" Some teenagers that I used to work with would want to leave behind their legacy writing songs. So we'd compile lots of songs that they wrote and recorded together.

So it's really dictated by the child's status of the day. Some days if the medical team gives us a heads up that we're not really heading in a good direction, we may be down to hours or days—that would be when I go in tentatively to check in where the parents want to take the direction. Do they just want to do something gentle? Then I may just sit by their bedside singing their favorite songs, or sometimes it may be just sitting next to them and holding their hands and waiting for them to have their awake moment and asking the patient what they want to do.

Usually because most of my patients would be non-verbal because of the breathing tube, I always have other materials for them to sign on a board or write on a board or point to pictures of what they want to do as well. So you need to find different ways of communication.

And some days I go in and they may just be chatting with their parents. And in the TEDx talk that you mentioned, when I was working with this little boy and his mom, a lot of the time this little boy was asleep obviously because he was so sick. And his mom and I started a project—we wrote a song together over the course of a few months for her little boy, which she sung to him as he passed away.

Lukas: Big stuff, big impact. And just want to honor you for your—it takes a lot of bravery and vulnerability to put yourself in that situation. Hats off to you, not many people could do it, and it's a great noble task to be there and be vulnerable with families.

How was the process received from traditional medicine? Because I could draw the similarities between alternate approaches—well, we know it's not an alternative approach, it's a proven approach—but there's generally a disconnect between the institution. So how was it received by the medical staff about you going in there, and any stories you've got around their views?

Maggie: I'm not gonna lie, it's not easy. It was not easy, and I bet it's still not easy. Obviously I'm on my turn to leave at the moment—I'm currently not practicing, I'm looking after my kids. But it's not easy because it's not a quick-fix therapy. It's not like taking Panadol and your pain goes away. It takes time, it takes relationship.

So I think it also takes a lot of education. A lot of our doctors—obviously you become a doctor because you want to help—and I think it is about us as music therapists, how we actually explain to the doctor how we can help, not just by another person making someone smile. Unfortunately in the medical system, when the medical system is financially so high cost, when being a music therapist that the taxpayer is paying, it needs to be more than just joy, more than just fun.

And I think that's a beautiful thing about music—yes, we bring joy, we bring fun, but we also improve physical outcomes. Like I said earlier, it improves our oxygen saturation, it decreases our blood pressure. And all those physical numbers that I've mentioned—it also helps when a child is dying or when humans are dying. We know that the latest research published last year in June talks about that hearing is the last sense that humans lose before they die.

What that means is when our brain gradually shuts down from the top down to our brainstem, everything slowly shuts down—it's like turning off lights. Each lobe, each section of the brain slowly turns off the lights, until we're left with our brainstem. And music is still able to stimulate the brainstem—our brainstem is still able to respond to music until the very end, until our brainstem, which is the last piece of brain, switches off the lights.

So that's how powerful music is. It's not just making someone happy, fun, relaxed, but it is actually neurologically stimulating, engaging, and connecting with us, with human, with our child until the very end. So it almost feels like every time I work with a patient, I feel like I am using music to hold onto their hands until they let go, until their brainstem switches off. And I think that's a beautiful thing that we're able to offer as music therapists to children who are dying.

Lukas: Yeah, for me what comes to mind is creating peace in those times—not just for that child but for the family as well. And I can see the parallels between what you do in a very intense environment, but there are similarities between education and early childhood education. You're coming up trying to portray this huge value to the child, but you're going up against something that isn't valued by the wider community. What keeps you going? What keeps you motivated saying, "Well, I'm going to keep going. I don't mind if people don't value the way I do and see it the way I do." What is your driver in that?

Maggie: I think that's the drive, really. And I think every time a doctor comes up to question, "What are you doing?" or "I've got a nurse wanting to come in to do other things," or "Instead of funding your position, I could have bought something else"—I feel like, "Okay, no, you don't get it." And I think that actually drives me—trying to make someone else understand. Because I believe that if you can make that person understand, that person also becomes your champion. Not a champion for you, but a champion for the future children who are unfortunately dying.

And I think every time someone questions or has doubts, I guess as I'm getting older, I feel like I'm trying to turn that into, "Hey, you're curious what I'm doing? I'll let you know." So instead of feeling like fighting against it, I feel like, "Okay, I'm gonna get your buy-in." I see it as more a positive challenge and turn that around.

Because throughout my 18 years in healthcare, back when I was working at the Royal Children's Hospital, at one point I was the only music therapist working four hours a week. And I was lucky enough, together with my team and my manager, to grow that position to become the largest music therapy team in the country. So I've experienced being alone and gradually growing my team. I really feel that working against it could seem so exhausting, but also it gives me energy and power.

And I think every time I meet a child that passed away, and meet a family that passed away—when I see the peace like you said, and the joy. It's weird to use the word peace and joy when we talk about death, but that's what I saw, that's what I experienced every time I met a family and was able to offer music. That's what I could see. And I think that gave me the energy and the power that there is something good in this.

And also, the other thing that I was sharing in the TEDx talk was working at the orphanage, when I was watching all these children that were dying in the room—there were 15 babies dying at the same time—and I just felt like there's nothing that I could do for them but sing. And as soon as I started singing, I could see the change. Like, every time when I feel exhausted or I feel someone's questioning me, I just think of all these positive moments. And they just give you the drive that I can't let this go. Every child should die with dignity and love, and that's what music can offer.

Lukas: Yeah, absolutely. That's monumental. It's big, but it's also such a beautiful thing. Palliative care is traumatic, it's sad. I personally experienced it with my family. No one wants to see their family go and die, but if music could offer that one hope—letting me know that my family member is dying in the arms of comfort and peace—I would want that for my family.

And you connect with families after, as they process this grief as well. It's not just speculated evidence, you actually have that feedback directly from the families telling you how much this meant to them.

Maggie: Yeah, definitely. Obviously we don't reach out to families, but a lot of families after their child passed away will come back to the hospital to say goodbye. Because obviously we were there for the most significant moment of their lives and most traumatic moments. A lot of families, being so kind, want to say their goodbye but also express their gratitude. And that's when we often get feedback from families. Seeing the joy and peace in their face just speaks volumes.

And a lot of the time in music therapy, we offer the parents whether they would like to video it on their phone and record it—they're very welcome to. And a lot of times when parents come and say goodbye, they'll show all the past videos. "Look at this, he was so happy here when he was singing with you and was kicking his legs to play the bells." And you can see that you have left a musical legacy for these parents to remember their child in a positive way.

Lukas: Yeah, absolutely. And being involved in such a heavy field but euphoric one as well, because you are absolutely contributing to these families—what encouragement would you have for people that are feeling the daunting mission of wanting to help children, but feeling weighed down by the monumental mission? It might be in therapy, but it might just be in education.

Maggie: I think that obviously, know your strengths—it's important—and know your weaknesses as well. Everyone plays a part in doing what suits them. For me it's music therapy and palliative care, but you don't have to play in the same game. There are lots of other areas and other children that—I don't want to say need help—but need you to amplify their life. And I think it's finding the why, the right button that clicks with you. Find your why.

Lukas: Not sure if you'd be exposed to this, but a question that comes to mind is how do you support someone to deal with a death, like even a sibling? There may be siblings involved, and children understanding that—is that something you're involved with, with the families as well?

Maggie: Yeah, we're very lucky that obviously because we're working at a large hospital, we have a team of palliative care practitioners—we've got occupational therapists, speech pathologists, doctors, nurses. Everyone plays a part to support the family. So you definitely work with siblings, trying to get them to understand and do what they want in this journey of saying goodbye.

Working with siblings and families is definitely part of what we offer. And often it's about whether they actually want to use music as part of them understanding the journey of saying goodbye. So yeah, it's really dictated by the families. And I often have the privilege to support siblings to say goodbye in their ways.

Like I mentioned before, a lot of time working with children in palliative care, the patient itself may not be fully awake and ready to be engaged when you arrive. And a lot of the time, other families are in the room. So your role is also just supporting them and offering them, "Okay, well, little patient is asleep. I see that six-year-old sister and two-year-old brother is also here. Should we make music together? What should we play for your brother who's sleeping in bed that's sick?"

And through that play, through the singing, through playing and making music together, often they would talk about other things that are deep inside their heart as well. Sometimes as music therapists, we allow them to explore that further. Through our training, we're also exposed to the elements of psychology and play therapy and child life therapy—all those topics. So there are certain levels of skills that we're able to handle as well as supporting these children to explore their feelings.

But there are times that also we can see that, okay, it's more than just allowing them to express, there's something more to that that's quite clinical. Then we refer them to psychologists or invite psychologists to come into our session to engage in a session together. So that it's not just me, but the psychologist is using her skills to guide, to treat, or to explore what is happening with the siblings in regards to dealing with the patient's death or the patient's dying process.

Lukas: Yeah, and for those people wanting to find out more—they might have ignited a little spark in them today about how to support families in this field—how would they go about finding out more about it?

Maggie: I think it depends on what that help looks like that you want to do. Obviously in Queensland, the Queensland Children's Hospital as well as Hummingbird House, which is a hospice, they always look for volunteers. So that could be a first start. And if you want something deeper, then definitely I encourage you to explore—if it's music therapy, contact the Australian Music Therapy Association to find out more, what it takes to be a music therapist. And maybe think about which direction you want to take. Is it something that alongside what you're doing now, you want to contribute? Or whether you want to really take that seriously to be your career. I think starting the conversation is the first step for sure.

Lukas: Yeah, and people can find your TED talk as I mentioned in the show notes. But finally, I just want to say a heartfelt thank you for all you do. It's an absolute integral part of life. I was actually—I think I was in Year 4 or 5—and I was in hospital for meningitis. And I had a young man, because I was in intensive care unit, I had a young boy my age pass away next to me. And then to see the support that reached out to me—that wasn't involved—I remember that from that young age. And to see the support that was given to his family around that, it's just so integral. So it really hits a note with me. So really appreciate all you do, your TEDx talk is absolutely phenomenal, so beautiful, and just keep up this amazing work. And thanks for all you've done for pioneering this field as well for so long, getting this out there.

Maggie: Thank you. Thank you for having me on your podcast.