Episode 40: Music and Hospice with Rory Bolton, Part Two

00;00;11;05 – 00;00;38;08
Rick Hoaglund
Rory Bolton has used his musical talent to perform for audiences all over the world. He’s performed on cruise ships and has even worked with the circus. But for the last six years, he has used his talents for another purpose. Rory uses music to help the dying. You’re listening to On Topic with Empathia. I’m your host, Rick Hoagland. Welcome back Rory. Thanks for joining us again.

00;00;38;10 – 00;00;39;26
Rory Bolton
Thank you, Rick.

00;00;39;28 – 00;01;11;09
Rick Hoaglund
So we’ve been talking about using music therapy in a hospice setting. And I guess my big question is: you know that the end is coming for hospice patients, and it could be quick or it could be – and I think that’s basically a fable that people think that it’s always quick. It’s not, it doesn’t have to be quick, I know that from personal experience. So how do you set out a treatment plan for someone not knowing? I mean, you know that the end is coming, you just don’t know when. Or maybe I’m wrong. Tell me if I’m wrong.

00;01;11;11 – 00;09;03;21
Rory Bolton
No, I mean, as we’ve probably talked about before, and maybe you’ve just heard this phrase tossed around. Nobody does have that crystal ball of when that finality will be, when someone makes that final transition. And even the best hospice clinician or medical director on hospice can’t always say exactly. Yes, we do have hallmark signs that we’ll tend to look for and will provide some kind of end of the life education to families and maybe even to patients themselves. Like, this is what you may experience given your primary diagnosis, your primary disease, and hopefully that helps guide them on their journey so that they don’t go into a more panicked state of when they start seeing these changes. And that can be physical, that can be respiratory, that can be agitation, restlessness. We often call it terminal restlessness, these sort of involuntary responses. But again, our job as clinicians is to be that guide for them to be a comforting presence along this journey and to manage those symptoms as we do see them. Because even if someone is showing more labored breathing, well, the good news is that we have comfort meds for that that can help break that up and allow them to breathe easier. And of course, music is is a great tool for that. I can be at the bedside and I can actually watch someone’s chest rise and fall and intentionally match the music to kind of get on the same page with them. Just kind of a quick story. That was an extremely powerful moment for me in my internship, and it turned out to be my first, actual death experience. And visit is that of this lady that I only met once. And at our initial assessment, we had a great visit. Her daughter was there. She had this velveteen rabbit, almost like a plush stuffed animal. And I found out that she was a drama director and teacher. And one of her favorite plays was that of The Velveteen Rabbit. And I left that visit, and somewhere up in that crazy musical mind, I’m like, there’s got to be a song about this. And sure enough, if you are a contemporary piano listener at all, George Winston has an album called Winter, and in that there is the song The Velveteen Rabbit, and it’s really the theme if – even if you’ve listened to the story and have kind of caught the the music in the background. [Singing] “Dee doo doo doo doo doo,” and it starts off in, in, almost, a waltz so that musicians we would call that a 3/4 pattern. But it was, it was a very, fast waltz, almost like there’s a grand gesture of, of a one kind of moving a song: 1, 2-3, 1, 2-3. And so it’s not 1-2-3, 1-2-3. And so it’s a very different, different feel. And over that, actually that first weekend after meeting this patient had a sudden change in condition. I, I couldn’t have have called that even if I wanted to because we had a great visit; she was alert, she was oriented. And I made a call out to the nurse and the social worker at the time, as well as offering out a visit of additional support to her daughter. And we met and I had just enough time to kind of do my research. And I brought back a small keyboard and without really saying much other than just approaching the bedside, she was presenting labored breathing. She had some signs of terminal congestion where you you hear a little bit more of, kind of that, that mucus sound – some people may call it like, the death rattle – there’s a lot of different names for it, but really, it’s just all, all part of, that end of life process. And it is something that, that we can manage and, and help someone breathe easier. And I set up the, I set up the keyboard right by the bedside and I listened for a little bit. I started in with the music and I, I intentionally tried to get on the same page, and I knew that she was breathing very hard – it was very short and shallow – so I knew the music had to kind of move itself along. [Singing] “Dee da da, dee da da, dee,” and the magical moment in all of that was as soon as within probably about 20 to 30 seconds we did get on that same page and her breathing was matching the music. And I knew at that point that we were going on this, this journey together, amazingly, that the daughter was was in was sitting in the corner kind of watching all of this unfold. And within moments that those signs of, and sounds of her terminal congestion completely ceased. It was absolutely incredible. And I kept the music going, and we went on this journey together. And as her breathing changed, so did the music. And it was almost like a music box winding down. You know, when you crank, you crank something up and it and you hear the music, just as as if you would hear it maybe on the radio or something. And it’s playing. But as that peg keeps turning, the music starts slowing down ever, ever so slightly, ever, ever so gradually. And it was, I still kind of get a bit emotional, kind of reliving that moment because it was so powerful to me. The daughter approached the bedside as the the social worker was it was in the room with us and she had indicated, mom is, you know, is making that transition at, at this moment. We were all just, just very amazed with what we got to see before us. And as the daughter leaned in to give her mother a final kiss, a single tear ran down the patient’s face, and she took her last breath. And following that moment, I kind of wound the the music down and came to a moment of just creating that atmosphere still for them. But then I eventually ceased, and I wanted to give the daughter that time and space. And she said that was in, in no other words, beautifully orchestrated. I mean, you, it was timed perfectly: the music and her passing. And I guess depending on wherever your religious affiliation lies and whether that’s a spiritual being, whether that’s a creator, whether that’s God, the only way that I could describe it would be divine orchestration. That I, that I was there in that moment, that for some reason the Velveteen Rabbit was meaningful to her, and that I was then able to provide that music and that that tune, and that was what she needed, despite any other family members coming in and giving permission for her to let go. That’s what she needed. And I mean, talk about a life changing experience.

00;09;03;24 – 00;09;24;27
Rick Hoaglund
That’s what I was just going to ask you about. So your story is a is a great example of how that has to affect you as well. So how do these experiences affect your daily life or your outlook on life or do they? Do they? I mean, you you do this every day for job.

00;09;24;29 – 00;10;47;12
Rory Bolton
And you know, and it’s, it’s such a great job it – because it’s not even a job. You ask any hospice clinician and it’s not a job. It’s, it’s not a chore for them to help someone on this journey. It’s, it’s a calling. It’s, it’s where they need to be at this time in life, and they know that their presence is making a difference for their patients and families as, as do I. And it’s that those little signs of, of affirmation for us, that keep the wheels turning. But absolutely, self-care is so important of, okay, I just walked out of a death visit. I’m probably shaken up a little bit, even though I’m trying to stay emotionally grounded amidst everything, but wow, what just happened before my eyes? I mean, it’s, it’s kind of a reality check of, I mean, you talk about death and dying and working in that field, but this actually just happened, and it humanizes the experience. It makes us count so many of our blessings, you know, it goes goes along with, good ol’ Bing from White Christmas.

00;10;47;15 – 00;10;51;03
Rick Hoaglund
Does it frame your view on death as well?

00;10;51;05 – 00;12;33;26
Rory Bolton
Absolutely. I’ve, I’ve experienced death outside of working in, in hospice and then experiencing it within hospice and they are very different experiences. Not really even on a, a similar comparable level. I guess, because as a, as a hospice clinician, getting to have a tool to use to aid in that journey and not be the one playing – being a family member, playing that waiting game. If someone has had a changing condition, but we don’t have that crystal ball that, that can that can be so much on on family and friends of just being at the bedside and seeing these changes, but not knowing what is, what is to come. And I feel it’s focused so much of being present in the moments that we have and not necessarily worrying about the past or even what went wrong leading up to this moment, and not necessarily projecting ourselves into the future and trying to plan for the unexpected. Because, because ultimately we can’t. But to be present in that, in that time and space, in that moment and allow someone to feel all of the feels that music brings them, to give them a healthy outlet of expression and again, serve as, this sort of nonverbal, validating tool that I’m here with you on this journey and you’re not alone.

00;12;33;29 – 00;12;42;21
Rick Hoaglund
Is there anyone that would be in your hospice care that you should not use music for?

00;12;42;24 – 00;15;16;20
Rory Bolton
So that, that’s an interesting question. And I learned this in my internship and I felt lost because of course I’m a music therapist, like that’s that’s what I do. Music is my world. I mean – and I came across a patient. Fortunately, I was with my supervisor at the time and we were able to really debrief after the fact, but music was not appropriate. In fact, any form of stimulation, whether that be your voice, whether that be something from an instrument, any audible stimuli was actually creating an aversive reaction and it was backfiring, causing more agitation, more anxiety. And although this particular lady was not able to verbalize that I, I saw increased moaning, groaning and restlessness, almost, almost to the point of sort of involuntary combativeness. And as a clinician, I felt completely lost. I’m like, what? What do I do in this? I can’t, I can’t leave this, this poor lady and this state of distress. I, I have to do something. And in sort of a – and without any intervention from my supervisor – I, I took a deep breath and I extended my hand out to hers, and I just took several calming, deep breaths, trying to focus on my breath and trying to be mindful of what I was creating around her, because music was not the answer in that case. As difficult as that was to accept for me, I continued just taking some of those deep breaths and to my surprise, the agitation ceased. The moaning stopped, her breathing changed and stabilized. It was an extremely powerful, humbling but yet insightful opportunity for me to realize that music is not always the answer, and we still need to find those creative ways, if that is the case, of how we can meet our patients needs, but maybe not through musical means.

00;15;16;22 – 00;15;36;07
Rick Hoaglund
When you’re applying music therapy to someone, are you looking for – because you’re a clinician – so are you looking for something that’s like a measurable outcome or more of an emotional outcome, or is it kind of a mix? Because it’s not like you’re giving them an injection and you can tell because they’re, you know, certain things happen to you, right?

00;15;36;11 – 00;15;36;51
Rory Bolton
Right

00;15;36;52 – 00;15;40;27
Rick Hoaglund
But maybe there are some measurable things.

00;15;40;29 – 00;19;35;21
Rory Bolton
Oh yeah, absolutely. It’s, so it’s great when I was doing a, a clinical rotation in the hospital setting, because music therapy is an evidence based profession, we we strongly rely on those hard numbers to kind of help back us and show the efficacy of what it is that we’re doing and how it is helping someone in that moment. And so what was great in the cardiovascular care unit, as part of my rotation, that because someone was hooked up to all these monitors, that was a great way for me to look up right in the middle of the music, not even have to stop the music, but then I could see heart rate go down. I could see, pulse ox, you know, sort of stabilize and breathing return to a more stable baseline itself. And those, those are great then to include in my documentation, because when a doctor is looking for what is, what is working, they can immediately turn to my note and see, okay, over the course of these 45-60 minutes, Mrs. Smith was was not only able to reduce her heart rate, but then she, where she wasn’t even able to participate at the beginning because she was in such of this heightened state of distress. We saw that she had a conversation at the end of the visit because her systems had returned to a comfortable baseline for her that allowed her to, to function in the, in that sense. So we’re always looking for ways that we can find those, those hard numbers, but maybe we’re not in the hospital and we don’t necessarily see that, it’s, it’s still something that can be very measurable. We’re not so much doing what we would call as clinicians like a frequency count. So if you’re working with kids, you’ll say, okay, Johnny is going to repeat this five times in the course of three sessions and this goal will be a – I mean, it’s it’s sort of very what’s, what’s the word for it? We want to achieve a predictable outcome based on our, our interventions. And again, because we’re not creating a session plan per se, when we’re, when we’re working and talking about hospice, we have to again find creative ways of how we can measure for self-expression. Maybe that’s about sharing in, someone’s story and taking that trip down memory lane. Maybe that’s allowing music to be an outlet for them that day, and allow them to have an emotional release that they’ve been holding and bottled up inside. And maybe that’s also including the family, because there’s anticipatory grieving as they see their loved one traveling down this path towards end of life. But then on a clinical level, when we’re talking about agitation, restlessness, impulsivity to ensure patient’s safety, you know, all of those are very measurable. Maybe on a nonverbal level, when someone is no longer able to communicate that, that they’re having pain, we we get to become greater detectives. And on a, on a nonverbal level, we’re looking for changes in their facial affect: wincing, grimacing, muscle tension, relaxing and tensing of the body. All those different signs are going to indicate, even when someone can’t tell us, if they’re comfortable or not.

00;19;35;23 – 00;19;51;03
Rick Hoaglund
When someone is done with your care, so they’ve passed away that – we’re talking about in a in a hospice situation here – do you continue at all with the families as a music therapist, or does your role end at that point?

00;19;51;05 – 00;22;13;12
Rory Bolton
So I try to find a way that I can have some, some closure to myself, as well as for, for the family, because I’m part of the active hospice care. And then after their loved one passes. Yes, they’re, you know, they would go on to a bereavement support, and we have a fantastic, bereavement counselor, here at Pro Health: Adam is, is just fantastic. He – in fact, I’m down in the same office with him out at our inpatient unit, and he is just on the phone, constantly reaching out to families, to loved ones, checking in with them, offering his additional support in any, any way, shape or form. And I think that’s important, not only for someone who knows that they have someone on their side and is, is following them and checking in with them from time to time and at different milestones. Of course, that one year, 12 month anniversary is very important to, have kind of a check in and hopefully, you know, there’s been some return to normalcy or a new normal for the family. But one thing that gives me the the greatest honor and closure is that when a family member – and I’ve even have it, I’ve even had this happen when we’ve only shared one visit together – and to know that it has been that impactful and made that much of a difference, and that is for, for them to ask me to be a part of a celebration of life or to share music for their loved one’s funeral service, that is by far the highest up on, on the totem pole of of honors and accolades. To know that you you made such a difference that, and maybe we only only met once, but we made that time count, and we were able to make this emotional bond and connection – maybe together, maybe with their loved one even – that was just so powerful and so meaningful to them that they would want to include me at that time. So that’s, it’s such a great honor.

00;22;13;15 – 00;22;23;15
Rick Hoaglund
Do you ever have. I’m not going to call it conflict, but do you ever have skepticism – that’s a better word, actually – from a family member about what you do before you actually perform?

00;22;23;18 – 00;24;10;27
Rory Bolton
Yeah, yeah. So I, I always, if, if someone is brand new to music therapy, I kind of like to ask, what do you know about music therapy? And that’s when I kind of go into my little spiel, not necessarily an elevator speech of going into the, the lengthy definition of, of everything, but how can I use it in the moments in the time, that we have together? And how can music be that conversational piece where I’m not going, I’m not playing through every song from start to finish doing all the verses, all the refrains and, you know, we’re at this concert for music. Yes, of course, family members will still call it. Oh, you, you know, to their to their loved one, “Oh, isn’t it great? You’ve got a private concert this afternoon,” and I just chuckle inside. It is what it is and you’re not going to change someone in that sense. So to, to their extent they, they can call it whatever they want. It, it does get to be a little bit confusing, and there’s often some miscommunication of when I walk into a community, into a skilled nursing facility and assisted living, and other residents see me walking in and, “oh, we have entertainment for this afternoon,” “Oh, the guitar guys here,” I mean, you name it. Like I, I’ve, I’ve had so many different nicknames. I, it’s – and I’ve only worked in hospice for six years, so I, I don’t know if thats something I should be proud of or not.

00;24;10;29 – 00;24;31;40
Rick Hoaglund
What do you do if, if you find out that the individual that you’re either going to see or maybe you find this out in the very first few minutes of meeting them, they don’t speak English or they’re of a religion that, that you’re not familiar with, and they want to hear songs from their homelands,

00;24;31;43 – 00;24;31;49
Rory Bolton
Sure

00;24;31;52 – 00;24;32;11
Rick Hoaglund
Or religious background, what do you do?

00;24;32;13 – 00;29;09;00
Rory Bolton
So fortunately, for me, with my background, I actually was opened to music therapy at the master’s level. As a bachelor in college up at Stevens Point, I was studying piano performance and with, with classical roots and foundations and. But then I was one of those crazy kids that took all these credits, and, in fact, I was on a pre-med path at one point. Perhaps somewhere along the way, when I was introduced to music therapy, that was the answer and that perfect fusion of allowing music to be that frontal focus while still getting to work in the allied health sciences and, and working in a health care setting. I still don’t know quite to this day, but I do know that it’s, it’s really changed me as a, as a person because I wear many hats. I am a professional freelancer, within the community. And so I understand the difference of performing versus music in a therapeutic context and how we facilitate that as, as, as clinicians. But all throughout my undergrad studies, I was accompanying instrumentalists and vocalists, and I guess maybe through osmosis, even though I didn’t take any phonetics classes of understanding these languages, I picked up on a lot and singing in the choir, we would, we would sing in different languages. So I actually I can sing in five different languages: German, Spanish, French, Italian and Latin. And actually I maybe, maybe it’s six because I’ve, I’ve, I’ve sung in, some, Hebrew and Yiddish as well. And in fact, I’ve, I’ve, I had, a Spanish speaking family and patient, just the other day that I, I saw and, I was able to, to not, not have a conversation with them in Spanish but provide that validating tool of honoring their loved one with that familiar music. And so I feel it’s it’s our job as clinicians that even if we don’t have that skill set to explore that opportunity because that just opens up the possibilities of how we can meet and connect with someone. Because if someone is is only speaking Spanish to their loved one, and and any time you try to communicate with them, even if you’re trying to discern if they’re having pain or not – which I, I think I’ve often use the phrase tengo dolor to just ask if, if they’re having any, any pain. And so I’ve tried to pick up on on little pieces along the way, but a lot of my accompanying experience working with vocalists, singing in foreign languages has played an immense aiding tool in allowing me to bring that into my clinical practice as a music therapist. And so I guess for for my sake, I don’t shy away at that. I, in fact, I gravitate towards it and say, oh, this, this is an opportunity for me to really explore something different. And it also changes things up. It, you know, it keeps it keeps the day, the days interesting going from one visit to the next because you’re not doing, [Singing] “on top of Old Smokey” or, [Singing] “Daisy, Daisy, give me your answer…” And you know, so if you’re not, you don’t feel like you’re you’re going into this cyclical rut of getting stuck doing the same song. So when, you know, someone is is able to share about their, French up upbringing or maybe their family. And then I think back to actually having studied French, both in high school and college and, and the song. [Singing in French] You know, it’s, it’s fun because then you get to have that communication tool with them.

00;29;09;03 – 00;29;31;28
Rick Hoaglund
When you’re speaking to someone that’s interested in becoming a music therapist and especially someone that is really interested in doing in a hospital setting or in a in a hospice setting, is there any sort of story that you tell them? Is there any sort of experience you’ve had that you tell them that you think kind of sums it up? I know this is a difficult question, sorry.

00;29;32;04 – 00;30;27;12
Rory Bolton
That is a difficult one. You know, it’s, it’s so hard to pinpoint just one because of the fact that every journey is different. Every hospice experience has sort of its own unique identity to it, and even if someone has the exact same disease progression and hospice diagnosis, whether that be congestive heart failure or COPD or Parkinson’s, they could have completely different pathways on that end of life journey. So, to be honest, Rick, it’s, it’s kind of difficult to again, say, give a structural framework of this is how it’s going to be because there’s so much of that that is unknown, even if someone has a similar progression, a similar disease.

00;30;27;14 – 00;30;42;02
Rick Hoaglund
Is there a way that you could explain to them emotionally what you go through or why you want to do this, maybe an experience that you’ve had that says, this is why I get up every day and I go and I do this? It’s because of…

00;30;42;05 – 00;31;50;29
Rory Bolton
So I, I try, I try not to necessarily share case studies with, with another family or patient because I don’t want to shift the focus away from them in that, in that moment. But in that same respect, if they say something to me after the fact, and you know, we’re wrapping the session up and so it could be something as simple as, I really needed this today, that to me speaks volumes. And then I, I will say, you saying those words and and me hearing them, that is the affirmation that allows my engine to keep running and, you know, and maybe they’re extending wishes, hoping that, the music that I share in the rest of my, my journey today with other individuals has that same impact and emotional meaning as it did for them. Those are the tools. Those are the phrases, the, the affirmations that absolutely get me out of bed each day.

00;31;51;01 – 00;31;56;27
Rick Hoaglund
Is there any message that we haven’t covered today that you’d like our listeners to hear?

00;31;56;29 – 00;35;10;09
Rory Bolton
I always, I always like to say that hospice is a scary thing. Families, they hear that word and they immediately project themselves. They’re jumping to conclusions of hospice being the end game. But there’s so, so much more that hospice can offer. And we as a, as an agency with Pro Health, we strive to bring families on to service sooner than later. So we don’t have to have that quick turnaround, but really then they get to appreciate to receive all of the services available through this hospice Medicare benefit, including music therapy. And because whether we have one visit or we have a year and a half together, we can still make, make a difference, have that that impactful visit with them and to share that moment together. It’s, it’s so important to, if you know, if you’re ready to stop any sort of treatment, any curative approach, and you just want your loved one to be comfortable, or maybe you yourself have sort of reached the end and you just want to live out your life. Hospice is, is not such a bad thing. And we, we can still allow you to live your life to the fullest, to allow you to take those trips and make those memories. And, I mean, when it comes to eating, unless someone is on a specific diet with hospice, kind of anything goes, really. I mean, we want you to live life to the fullest. We want to be able to promote that quality of life for you through any means possible. So if if you feel that you’re you’re up against the wall, you don’t, you don’t want to keep making those trips into the hospital and the clinic. And for them to say, well, there’s nothing we can do. And then they send they send you back home. We can we can help with pain. We can manage that. on the home front or even within a community, we can address those spiritual concerns, maybe that unfinished business allowing you to make that, that connection. We can help families in that in anticipatory grief stage of making sure final arrangements are in place so that when the time comes and their loved one passes, they have things already set aside. And on top of that emotional stress, they’re not burdened with that in addition. So absolutely, hospice is a beautiful thing. It’s a powerful tool and aid for someone’s recovery of their spiritual being. For family to come to terms and accept and to be a part of that journey once again, is just the greatest honor and privilege.

00;35;10;12 – 00;36;11;06
Rick Hoaglund
Rory, thanks for talking to us and thanks for doing what you do. I really appreciate it.

00;35;12;09 – 00;35;12;15
Rory Bolton
Thank you.

00;35;12;18 – 00;36;11;06
Rick Hoaglund
Thank you so much. Along with traditional music therapy that Rory has told us about in our podcast, he’s also involved in something called Heartbeat Recordings. Using a special microphone, Rory records the heartbeat of his hospice patients. He incorporates this sound into original music composed for the families. It was pioneered by another therapist, Brian Schreck, and now it’s an important part of Rory’s mission. In the evenings, Rory is a private music instructor in the greater Milwaukee area. He shares his great love of music with his students. To hear the other episodes of On Topic with Empathia, visit our website Empathia.com. Follow us on social media @empathia and subscribe to On Topic with Empathia to you hear new episodes as soon as they go live. I’m Rick Hoaglund, thanks for listening to On Topic with Empathia.