Episode 39: Music and Hospice with Rory Bolton, Part One

00;00;13;00 – 00;01;47;03
Rick Hoaglund
My sister was in hospice at the end of her battle with cancer, and I learned a valuable lesson about the end of life and the struggle of knowing that you’re dying sooner than you would like. That is: the choice of how to die lies with the individual. For anyone in hospice, this choice is to ensure that they’re as comfortable as possible until the end. They have decided not to continue medical treatment with their condition, and they’re generally not expected to live more than six months. One surprising note for me was that my sister was in hospice for more than a year, and she lived in her home until she died. Hospice care in the United States began in the 1970s, mostly for cancer patients. Today, almost 2 million people suffering from a variety of illnesses are under hospice care at any given time. These patients are seen by a variety of specialists. The specialist provides expert pain and other symptom management, and the care is overseen by a physician, a nurse, as well as support from a team of professionals, including social workers and chaplains and certified nursing assistants. Our guest today is a member of a hospice team in Wisconsin. He’s not a doctor or a nurse, but his kind of medicine uses music and his job has changed his perspective on dying. You’re listening to On Topic with Empathia. I’m your host, Rick Hoaglund. Today we’re discussing hospice and music with our guest, Rory Bolton. Welcome, Rory. Thanks for joining us today.

00;01;47;06 – 00;01;49;09
Rory Bolton
Thanks for having me, Rick. Appreciate it.

00;01;49;11 – 00;01;58;08
Rick Hoaglund
Tell me a little bit about music therapy when we’re discussing particularly about hospice patients. I mean what does it do?

00;01;58;10 – 00;03;48;03
Rory Bolton
So if you were to go on to the American Music Therapy Association website and you would look up the definition of “What is Music Therapy?” you would find jargon such as: it’s an established health profession, it’s used to create a therapeutic relationship and it’s used to address physical, emotional, cognitive and psychosocial needs of our clients – and if we’re talking in hospice, our patients, since it’s a medical profession. That’s a lot for patients and their families, especially in hospice, to get a grasp on. And I like to phrase it in a way that it’s certainly not music for performing or for entertaining sake, but rather think of it as using music as a conversational piece. It’s a chance to get to hear the patient’s story through music that has been meaningful and impactful to them. Maybe that is, listening to [singing] “there were bells, on a hill, but I never heard them ringing. No I, never heard it at all. Till there was you” to help someone reconnect with their spouse, or to remember them and to honor them that way in, say, 50, 60, 70 years shared together. maybe it’s using music for stimulation to keep someone alert and engaged, and we can add kind of a rhythmic element to it.

00;03;48;05 – 00;03;55;15
Rick Hoaglund
So do you ask for participation from the person or are they, is it more of a listening piece?

00;03;55;17 – 00;11;12;03
Rory Bolton
You know, it’s both. Rick. Actually, because I never want to feel that I’m imposing myself or I’m forcing music on to them and we’re certainly not measuring someone’s musical ability, especially talking about hospice and that end of life journey. But it can absolutely 100% be a creative outlet for their expression. If someone, I’m sure, any of the listeners, maybe even yourself have heard of those sort of miracle stories of the power of music. And it’s and truly, it’s healing power and therapeutic qualities to it for someone who has been completely unresponsive in a coma or they can’t say anything in a normal conversation, but the minute you add a musical element to that setting, all of a sudden their ability to recall, their ability to engage, to focus, to participate, to even open up and take that trip down memory lane becomes so, so much in focus, so relevant to them. And that’s what I love. I tell patients and families that, you know, the patient themselves, they’re in the driver’s seat really, dictating how the session is going to go. I don’t necessarily come in with, what we would call as clinicians, a session plan. Now, if you’re working with children, I would definitely recommend having a session plan in place because you you need to keep that engagement, focused attention to reduce impulsivity, to make sure that you don’t have, monkeys climbing all over your back and taking all of your instruments away from you. And there needs to be some order to all of that in hospice. it’s a it’s a very, very different kind of setting, of course. And I think my, my greatest practicum, clinical practicum experience was that of working in a hospital setting where I was rotated between three different units: cardiovascular care, acute rehab and pediatrics. And as you can imagine, there is going to be a variety of interventions, a variety of music and repertoire that is going to be used. But I’m not going to be playing Edelweiss to a eight month old who just had, tooth surgery and is recovering. And so it’s a matter of creating this toolbox that you can pull from at any given moment, and finding all of the unique and creative ways that, music can be a part of that to accomplish these goals and really apply what we call the ISO principle in music therapy. And that’s just to meet someone where they’re at on any, domain level that could be cognitive, social, psychosocial, emotional, spiritual, what have you. And so I use music in that sense to create not only, a calming presence. You’ll notice that hospice clinicians do tend to have a softer spoken voice in general. Just to approach things with a little bit more sensitivity, to show that empathy to both the patient and their families to, and almost, music is that nonverbal, validating tool that even if someone is approaching end of life and, in that minimally responsive state, I always provide just a gentle education that our sense of hearing is the first to come in, but it’s also the last to leave us. And music can be so powerful. I’ve, I, in fact, have been present where music has been this transitioning medium of allowing someone to make that pass and transition, from this life into the next. And as you can imagine, of course, it’s it’s an extremely powerful experience, spiritual even even to say, depending on, your religious beliefs and such. But many people do turn to religion, at that end of life, finding their own form of reconciliation with, their maker, their creator, their spiritual being in that sense. Many people have what we might consider unfinished business, and we don’t necessarily know what that is or how that plays an effect into their timeline. Of course, we always say no one has that crystal ball when it comes to hospice and end of life. And we know that it can happen at any moment, even sometimes to clinicians, suddenly and unexpectedly. We have conversations like that in our team meetings where we said “yeah this this patient was stable all of last week and over the weekend had a sudden change in condition. and they ended up passing,” and so, you know, it kind of humanizes that aspect for us as clinicians too, that where as, as, many people might even say, hospice clinicians are angels and in that sense, I’ve been told that by many family members that you are just a godsend at this very right time when we needed it the most. And of course, that’s our affirmations that get us up out of bed each day. It’s not a job, you ask any hospice clinician and I would say 99.9% will say that it’s a calling or something to that effect, that they knew they were in the right spot, the right place, in their time and their journey, to come in to hospice. For me, that was going into my internship, and again, coming out of that hospital practicum, it was just a chance to build up my music repertoire, to be able to have a selection from the 1920s all the way up through current hits of today, because I’ve had patients as young as their, late 30s, early 40s. there’s a particular disease, Huntington’s, that will often, take patients at a very and unfortunate early age, many of them within, probably their early 40s. And that’s extremely relatable. I myself, I’m 35 and it, it just brings a lot of things into focus. And, and of course, it reminds us that we need to find ways as clinicians to have that balance in life to be able to stay grounded, present for the families, the patients themselves, so that we can provide the best care and service to them.

00;11;12;06 – 00;11;26;26
Rick Hoaglund
So you talked about having a musical repertoire that, that spans many types of music, many genres of music, many, I guess over ages as well. How do you select the right music for someone? Or is it important? Maybe it’s not even important.

00;11;26;28 – 00;11;44;27
Rory Bolton
I definitely feel that choosing the right music has a significant impact on someone’s response, someone’s ability to participate. Because if you, if you think about it, if… let’s, let’s just turn it over to you. What’s a favorite song of yours, Rick?

00;11;44;29 – 00;11;47;26
Rick Hoaglund
You know what was interesting? You did until there was you just now.

00;11;47;26 – 00;11;48;11
Rory Bolton
Yeah.

00;11;48;14 – 00;12;20;01
Rick Hoaglund
And it’s funny because I actually sang that in choir. I had a solo in that, and I can’t sing. I said, please don’t ask me to sing. But it was weird because it had an emotional, I had an emotional attachment to that song. When I heard it, I immediately thought about, I know this song. This is something I sang when I was in high school in choir, and I actually sang it at a contest and, and we won. And so I have I have an emotional attachment to that song, but, I, I actually like jazz.

00;12;20;04 – 00;12;20;09
Rory Bolton
You like Jazz? Okay.

00;12;20;10 – 00;12;20;14
Rick Hoaglund
Yeah.

00;12;20;17 – 00;14;14;08
Rory Bolton
So, you know, in that respect, if, if your heart and soul is in jazz music, if I came in – and without any advance notice of your preference – but I came in, more of like, with a prepared set list of how I think you might react and maybe even make, inappropriate stereotypes. And that could be based on, race based on gender, based on social, socioeconomic status, a lot of different factors. I’m, I’m not doing my job as a clinician to really get to know you as a person, to get to know your story, your music interests. And if I come in and select something that I think you might, might enjoy, maybe we’ll, we’ll see some kind of participation. But if it’s if it’s completely in a different state of mind, a different field, so to speak, I’m not going to get that same response from you as if maybe I played: [singing] “Every time it rains, it rains, pennies from heaven. Don’t you know each cloud contains, pennies from heaven?” Because that’s the music that you are closely connected with, and that’s involuntarily going to allow you. You’re not even going to realize it, because that’s the way our body works. We hear a pulse, we hear a rhythm, a beat, and we, we immediately and trained to that. We call that rhythmic entrainment.

00;14;14;10 – 00;14;24;08
Rick Hoaglund
Does, I guess that’s part of your homework and I maybe it’s not really homework. It’s in your discovery phase when you’re first meeting the person that’s really asking, what kind of music do you like?

00;14;24;10 – 00;17;16;25
Rory Bolton
Absolutely. That initial assessment, if we don’t have any information from other, other staff that has interacted. I always like to say, especially when someone signs on to hospice, I don’t, I never want it to feel that the patient gets immediately overwhelmed. We always say there’s a lot of faces to hospice. I mean, you have your nurse, you have, a health aide, on the home front, or, you know, coming into a community, a facility, there’s a chaplain, there’s a social worker, and now there’s a music therapist. Even in some cases, maybe there’s art therapy, maybe there’s massage therapy. A lot of different of, of those creative arts, modalities. And I never wanted to come across, like, music therapy is an a la carte item added to the overall hospice Medicare benefit, because just hearing, “Oh, Mr. John Smith loves music.” Well, that’s not enough for me to go off of, I mean it’s, it’s great, and I will absolutely love to meet John and, you know, see if we can discover something more about that. Well, you know, how has music played something for you in your life? But really, as a clinician, I’m looking for those clinical reasons: are they suffering from social isolation, depression? I mean, when we had Covid and the pandemic, that was huge. And music therapists alike, you could ask, we’re based out of the Milwaukee area, and we all had to kind of come together as a community and figure out how are we still going to meet our patients needs, but we can’t, you know, everybody is closing their doors to us. I mean, we, we looked into telehealth platforms for someone who was able, not only just to have video interaction, but to be able to receive the music that way. Some were more successful than others. At certain communities that were restricting visitors if, say, the patient was on the ground level on the first floor, we would do window visits, as crazy as that would sound and, you know, would would schedule it ahead with family or staff, so that we could best facilitate it. And all they would have to do is come to the window and we would, of course, be gowned and masked up even outside, and we made it happen. So I think that’s a testament to our ability to, ever be flexible and always be adapting to the situation and meeting someone.

00;17;16;27 – 00;17;43;29
Rick Hoaglund
So you talked about being part of a team because you were talking about having team briefings and team meetings, and how important is the team concept to working with someone that is in hospice? You’re, you’re a member of, you named several members that were on that team. How important is that cohesive treatment plan and do you actually talk about the, the patient among each other to determine what’s next?

00;17;44;02 – 00;22;23;04
Rory Bolton
So in hospice we have what’s called an interdisciplinary group or an interdisciplinary team. Some refer to it as IDG, IDT, what have you, they they all mean the same thing. It’s a chance for us – we were regulated by the government by Medicare – to talk about our patients every 14 days. We have to discuss their current plan of care or any observations that maybe we’ve seen in our last visits together. If someone is presenting, a change in their condition and their status, we need to come together as a team. And although the core team of hospice is the nurse, aide, chaplain and social worker, and music therapy is not considered a core member, I feel it is just as essential because we can often get in there, address on a, on a different level, someone’s psychosocial status. And I’ve, I’ve had so many team members come up and said we’ve tried everything, for say, pain management and the med intervention is not working. Well, they didn’t have music yet. Plain to say, because music doesn’t come in the form of a pill, but I always tell patients and families that it is healing from the inside out. And maybe that, maybe that pain can’t be fixed with a pill or, or, a subq injection, but they need to have that space. There was a, there was a great conference I attended and one of our, really our, kind of founding fathers, Russell Hilliard, who, who wears many hats and, and just a huge shout out to him and his team. He’s, he’s a music therapist, he is a social worker, he is the VP of patient care for his agency – a brilliant mind on top of it – and he phrased it in the best of way possible that I’ve even passed on to music therapy students that I’ve mentored and supervised. And that is: music can act as a container of space in that time of healing. If someone in the patient or a family member has an emotional reaction and they start tearing up, let’s say, the worst thing that we can do as clinicians is to stop the music and try to console them, but rather, if we let the music do what it is intended to do, it will serve as a healing property for them. It will allow them to express what has been bottled up inside for them to, to be a daughter again for their mother and not be their primary caregiver because they felt this burden, this weight, just literally weighing them, them down and they haven’t had time to just be a family again. And I, I love when those moments happen because it’s it’s a validating tool for them that we’re on this journey with them and we’re going to be there with them even after their loved one passes. I mean, that’s that’s what a hospice bereavement support service then follows up with, and really extends beyond that for 13 months, because we want to make sure that we’re with someone and present with them over that year anniversary of their loved ones passing. That’s, that’s absolutely huge and can change family members in that sense. And so using music as that container of space and the beauty of music is that sometimes I don’t even need to be singing. I love using my voice as its own therapeutic tool, an instrument, but it can, you know, as I can just be, I could be talking, I could and I could just be kind of noodling in the background. But I’m creating this, this atmosphere for them. And then the beauty of live music is not only do we have the ability to start and stop whenever we want, like a yes, that is like a tape recorder, but we can adjust the timbre, the tone, all of these different musical properties, the rhythmic element, as we see these moment to moment changes, adapt the music accordingly. And it’s, it’s just, it’s just such a great and powerful tool in that sense. So I love getting to use music and create a container of space for someone and to give them a healthy form of expression.

00;22;23;07 – 00;22;35;24
Rick Hoaglund
So I guess you talked a lot about family. You talked a lot about your patient. Is music therapy driven toward the patient therapy or toward the family?

00;22;35;26 – 00;24;32;09
Rory Bolton
I like to, to… yes, of course it is. As I tell family members that your loved one is on our service, but it doesn’t stop there. Hospice is so much a family centered and oriented therapy itself, and whenever it’s possible, I, I love to encourage and include family members to get to share in those moments and to get to see their loved one, truly, truly, there’s – there’s kind of an expression – come alive. But it’s, it’s great when someone who has maybe been down and, and depressed not only opens up, but then takes it to the next level. But maybe they, maybe they get to share in a very tender, emotional moment together. And you get to be you get to bear witness and be a part of that. Extremely humbling experience for us as clinicians. And the way I view it is simply it’s just such an honor and a privilege to be welcomed into that time and space with them. And I usually end most of my visits just saying, simply saying thank you for allowing me to share this time to, share this space with you, with the understanding that we know it’s been an emotional roller coaster for you guys. We know that there are things that are not going as planned, and this caught us all off guard. And now we’re we’re trying to kind of pick up the pieces best that we can and face this, head on. And I think having that reassurance, whether it comes in the form of a verbal reassurance or just someone being there and extending an outreach of a hand, that speaks volumes.

00;24;32;11 – 00;25;02;19
Rick Hoaglund
In our next episode, Rory will tell us what it’s like playing music for hospice patients. He also describes how the music and his experience has changed his views on living and dying. To hear other episodes of On Topic within Empathia, visit our website and Empathia.com. Follow us on social media @Empathia and subscribe to On Topic with Empathia to hear new episodes as soon as they go live. I’m Rick Hoaglund, thanks for listening to On Topic with Empathia.