Patient Stories Part II

A few last reflections from a year of service:

“Julia”

Sometimes I am called upon to offer Music Therapy services to patients that do not appear responsive to other forms of engagement during their hospitalization. I was approached by a Child Life teacher, with this sort of request, to visit Julia, who was frequently turning down any such offers from teachers, specialists, and volunteers. Julia, an 18 year old female, has been a frequent patient of UCSF Children’s Hospital. The first time I met Julia, I was armed with information that she had been taking piano lessons in school. With this knowledge, I offered Julia the opportunity to continue her practice in the hospital and she took me up on it.

After our initial encounter, Julia would give me variable responses to my regular offers to play the keyboard. I learned that if I approached Julia with the keyboard and introduced my visit as lesson time, then Julia was more apt to participate. We continued in this way for several sessions. On a subsequent visit, I learned that Julia was admitted to the PICU (Pediatric Intensive Care Unit) and I was asked to go see her there. Julia was intubated and appeared in no shape to be playing keyboard that day. Instead, I offered her my voice and she accepted. Julia and I made frequent eye contact during the songs that I sang to her and I encouraged her participation through a nod of her head if she recognized the name or singer of the song. Soon thereafter, she was moved to a less intensive level of care and we were able to resume our keyboard lessons together. It didn’t happen too often, but it was a great thing anytime she managed to smile during our time together.

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“Layla”

Layla is an 18 year old female patient who has been hospitalized for a lengthy period of time at UCSF Children’s Hospital for end-stage kidney disease and lupus. She is regarded by staff as having high mood lability and being very unpredictable. The first time I encountered Layla was in Music Therapy group. She was visibly the oldest patient in the group, and spent the majority of group sitting on the periphery in her wheelchair, watching the activity. At one point in the group, a young patient, who was experiencing some muscle spasticity, was attempting to play the drum. I later learned that this same patient had accidentally hit Layla in the face when she first entered the room. Layla was sitting next to the patient and leaned over in order to help him play the drum with more ease.

My subsequent sessions with Layla have taken place at her bedside. I usually stand at her doorway and inquire if she would like to listen to some music. Her shrug is my invitation. Despite Layla’s apparent indifference, she is very clear about her musical preferences even when she says that she wants me to select the songs. Layla usually will not sing along, but I observe her to often look intently at me while I’m singing or at the lyrics in my songbook. If I sing an incorrect word or melody line, Layla most certainly lets me know. One time, she made the observation that the chords listed above the lyrics were too lightly printed to be seen. She took it upon herself to rewrite the chord changes in marker so that I was able to better see them in order to play the song. I later read in one of Layla’s chart notes that she has self-identified as feeling better when she is able to be helpful.

During one session, Layla took out a personal recording device and recorded a song that she had requested during a few of our sessions together: Avril Lavigne’s “Keep Holding On.”

You're not alone - Together we stand - I'll be by your side, you know I'll take your hand

When it gets cold - And it feels like the end - There's no place to go - You know I won't give in

No I won't give in

Keep holding on- ‘Cause you know we'll make it through, we'll make it through

Just stay strong - 'Cause you know I'm here for you, I'm here for you

There's nothing you could say - Nothing you could do

There's no other way when it comes to the truth

So keep holding on - 'Cause you know we'll make it through, we'll make it through...

During our most recent session, Layla not only made song choices, but sang along softly, danced along to the music, and spontaneously offered a song choice of her own. She is currently on a behavioral reward plan to reinforce good behavior, but I find that music is a reinforcement itself that keeps Layla positively engaged and able to make personal contributions to a collaborative process. I will never forget the day I walked by Layla’s room and I clearly heard her shout with no hesitation, “I want music!”