CPN | Music Matters in Palliative Care
7/11/2016
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Music Matters in Palliative Care

BY JESSICA STURGEON, MT-BC

Jessica Guitar

If I were to approach someone in the community and tell them that I am a “music therapist”, their reaction would likely be that of confusion and possibly intrigue. Each time I inform someone of my profession, the usual response is “Music therapy…what’s that?” or “Oh that’s nice! How did you get into that?” and “So, do you know how to play instruments? What would you even use in a job like that?” I have encountered these questions often enough to be able to provide an accurate and succinct response; however, I find that I’m often rushed to give a good description of my profession and my use of music therapy in pediatric hospice and palliative care. The opportunity to write about music therapy and my experiences here is truly a gift, as it allows me to fully share why I think I have the best job in the whole world and why I believe it is so effective for children dealing with chronic and life-limiting illnesses. First, I explain what it is, and then I give a few concrete examples.

Music therapy, as defined by the American Music Therapy Association (AMTA), is the “clinical and evidenced-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program”. Most people would state that music is “healing”, “relaxing,” and “part of who they are.” The very center of what I do as a clinically-trained music therapist is using that connection to music to meet their needs. Music therapy is used in various populations, from womb-to-tomb. This would include pre- and perinatal care, school and behavioral settings, geriatrics, psychiatric, rehabilitation, forensic and medical settings, and so on. The beautiful thing about music is its versatility. A board-certified music therapist has the ability to use music to meet goals including speech and motor rehabilitation, relaxation, communication, emotional expression, behavioral modification, and so much more.

My journey as a music therapist began in Indiana where I attended the University of Evansville. I had never heard of music therapy before. My plan was to major in music education, but little did I know that my plans were about to change! I was sitting in my orientation the summer before my freshman year when I heard about this music therapy degree. My school offered a double-degree program that would allow me to continue pursuit of my education degree while simultaneously obtaining a degree in music therapy. In this day and age, it’s always good to have a back up, so I signed up. I immediately fell in love with music therapy and all of the work I could do with others through music. All music therapists must complete a four-year bachelor’s degree or masters-equivalency degree, a minimum of 1200 hours clinical supervision through a national-roster internship, and pass the music therapy board examination. After five years, I completed the double-degree program and went on to do my music therapy internship in the Bronx, NY with a hospice agency. Once I was board-certified in 2014, I was ready to take on the world!

I am now the pediatric music therapist for a pediatric palliative and hospice care program in Florida. Our program serves both children diagnosed with chronic illnesses that may be life-limiting and children that have been diagnosed with terminal illnesses. We are blessed to have a pediatric-specific team that includes myself, a nurse, social worker, and child-life specialist. Currently, we serve approximately 25 children. All children have varying illness, family dynamics, and experiences. My job as the music therapist is to assess all of these things along with the patient and family’s preferences and abilities before starting music therapy. For example, some children may be non-verbal with high reports of pain and anxiety and only familiar with children’s folk songs. Another may have no cognitive delay but may be losing motor ability due to their illness and loves rap music. Several patients on our program are Spanish-speaking only. These all play a role in the decision to use instruments, singing, pre-recorded music, or other techniques. Let me provide some examples for more understanding:

 

 

Example One: Alex*.

Alex is a teenage girl with a neurodegenerative disease that will eventually result in her having no control or movement in her body and will limit her ability to speak or communicate. Despite this, she has no cognitive delay and functions like any other teenage girl. As her music therapist, I work on goals that include: providing opportunities for control and choice as she declines, expressing emotions related to her illness, and increasing her own coping tools as she navigates all of the changes that will occur. To address these goals, I have several approaches that I use. Each time she comes for a music therapy session, I give her complete control in deciding what to do on that day. It may be as small as choosing a song to complete lyric analysis to; or, it may be completing some guided imagery and relaxation. Regardless, I give her the control in deciding what she feels she needs in that moment rather than choosing it for her. To express her emotions, we may do some improvisation on instruments as she can project her emotions/thoughts onto the instruments being played. Another example may be doing lyric analysis of a song where she is again identifying emotions that she hears and comparing it to her own. In all these cases, music is providing her with a non-threatening way to share how she feels without using the phrase “I feel like…”. In every session, we are building coping skills together as she learns techniques that help her relax or bring her comfort. She often has found that listening to certain songs can help her relax when she’s angry during sessions, which can then be used when she goes home. Recently, she expressed an interest in playing the ukulele, which will provide her with a new coping skill and simultaneously assist with coordination and muscle control in her fingers. All of these techniques have allowed me to build a rapport with Alex, which gives her the freedom to discuss difficult issues with me or process those hard emotions.

Example Two: Justin*

Justin is a two year old boy diagnosed with a genetic condition that stunts his growth and causes malformations and dysfunction throughout his body and with major organs. Although he began on our palliative care program, he has since transferred to hospice. This patient is non-verbal and has little to no motor movement or communication. He has frequent periods of elevated pulse and decreased O2 saturation. In this case, music is used to address the physical needs of the patient. In most sessions, I utilize both familiar and improvised music on the guitar both with and without singing incorporated. One specific technique I use most often is called the iso-principle, in which I match the patient’s respirations and pulse and then gradually slow and soften the music to decrease his breaths and promote relaxation. He responds very quickly and usually has a difference of 10-15bpm from the start of music therapy to the end of each session.  If the patient is asleep (which he often is), I also work with his mom to increase her coping and express her emotions. One way we do this is through the creation of lullabies through songwriting. Using the patient’s favorite nursery songs, I assist in re-writing the lyrics to include things like what she loves about Justin, her favorite memories, her hopes for his future when he passes, etc. This has allowed her to talk about very difficult things in a non-threatening way and will provide her with a way to cope after his death as she looks back on the lullabies about him.

Example Three: Brian*

Brian is an 11 year old boy with Down’s syndrome who also has short-gut-syndrome. He is currently on our palliative care program and has a lot of medical and behavioral needs. In this case, music therapy was introduced to work on behavioral goals as patient had frequent episodes of hitting, biting, running, and non-compliance during medical procedures. To assist with this, I frequently use instruments to provide positive reinforcement and modeling of appropriate behaviors. When first starting music therapy, he was only able to sustain his attention for 5 minutes at a time and would often hit or throw instruments. Using behavioral techniques through music over the past year, however, we have now been able to increase his attention to 20-30 minutes with rare negative reactions or behaviors. Often, I will go with the pediatric nurse to provide additional support as well as she obtains his vitals for her nursing assessment. The instruments in this case have been used to distract from procedures and reward him once he has completed a component. Soon, we will begin working on communication as he has not met most speech milestones. This is another example of music’s ability to work on multiple goals at once and be versatile depending on the need.

Clearly, music therapy is extremely versatile and can meet a wide spectrum of needs. Whether it is physical, emotional, cognitive, spiritual, social, etc., music has the ability to meet children and their families wherever they are and help them through the journey. One goal that I have with every single one of my patients and families is to create a legacy. That may include writing a song or making videos, it may include recording their voice or heartbeat, or it may be just providing those opportunities for interaction that create lasting memories. Regardless, each child deserves to leave a lasting legacy whether they graduate off of the program or peacefully leave this world.

I sincerely believe that I do have the best job in the world and I am blessed to wake up every day and do what I love. For additional information, resources, or to find a board-certified music therapist near you, please visit www.musictherapy.org for more information.

 

Best to all,

Jessica Sturgeon, MT-BC

Pediatric Music Therapist

*All names have been changed for privacy and HIPAA compliance