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Sarah Pearson • December 18, 2014

Are we making a difference?

Helping professionals come in all shapes, sizes and scopes of practice. But we all have one thing in common: we hope that our work makes a difference. We want to improve lives, solve problems, and see that our skillsets and energy are being put to good use.

I work in inpatient oncology as a music therapist. Music therapy is a clinical health care profession that uses musical interventions within a therapeutic relationship to address client-centered goals. In inpatient oncology, I use live instruments, singing and songwriting to provide comfort, pain distraction, reflection, life-review, and emotional validation and reflection. About half of the patients I work with are palliative. My colleagues are RNs, social workers, spiritual care providers, dieticians, pharmacists, oncologists. “Making a difference” is something the whole team is striving for.

But what does it mean to “make a difference” when the patients we work with are dying?

Atul Gawante’s recent book “Being Mortal” has helped raise the conversation in our country about quality of death as well as quality of life. “When it comes to the inescapable realities of aging and death,” he writes, “what medicine can do often runs counter to what it should.”

We all want to help. Gawante, in a CBC interview November 17th, said that in his own practice as a surgeon, he felt very comfortable with the “fixable problems” such as appendectomies and other routine procedures, but less comfortable with the “unfixable problems.”

As a music therapist, I live in the space of unfixable problems. I cannot offer patients drugs or life-extending procedures, write prescriptions, or even explain their disease to them in detailed medical terms. I can only be present with patients, in a therapeutic relationship, with music as a thread connecting us.

Many times, patients have looked at me from the midst of their physical suffering and said, “I just want it all to stop.” Hearing them, I feel the inner turmoil about quality of life, about decisions to stop treatment, about the persistent drive in the current medical model to extend life at almost any cost. I feel powerless to help them. But I know that I can walk alongside them, at least for a while.

I wonder how much any health care profession, regardless of scope of practice, can actually help at the end of life, and how much of our collective work is simply about walking alongside.

The desire to make a difference is so strong. So it’s no surprise that feelings of helplessness, of not making a difference, is a common cause of caregiver burnout. Burnout is a common risk in all caregiving professions, but each profession has its own unique set of causes that might lead to burnout. In a 2013 study on burnout in music therapy, Dr. Amy Clements-Cortes identified common burnout factors for music therapists to include being a “professional minority,” and feeling “isolated and misunderstood.” Very few facilities or units employ more than one music therapist, so we end up working in isolation, with collegiality from other disciplines but none from our own. Also, music therapists are often working in an environment where the benefits of music therapy are not well understood by attending nurses and physicians. Music therapy can often be the “afterthought” of the disciplines present on a team, regardless of how appreciated and respected the therapist may be.

This can leave us yearning for validation from our colleagues and patients that our work matters. It can leave us yearning to make more of a difference, and burning out from feelings that we are not.

Recently, in a conversation with a colleague, an oncologist, I confessed a deep secret:

“Sometimes, during Rounds, I dream of going to med school, so I could actually make a real difference.”

My colleague the medical doctor paused for a moment, then replied: “I’m not even sure we’re making a difference half the time. You may be making more of a difference than us doctors are.”

I don’t think this oncologist and I need to argue over who is making more of a difference, but we can acknowledge that we share the same insecurities. Medicine has its limits. Music has its limits. Ultimately, life has its limits. We may all just have to adjust our idea of what “making a difference” really means, and continue to offer one of the greatest human gifts: walking alongside a person through their suffering.

Sarah Pearson is a music therapist working in oncology and palliative care in Kitchener, ON . She is the Program Development Coordinator for the Room 217 Foundation and Lead Facilitator of the Music Care Certificate Program.

By Shelley Neal March 8, 2024
I initially trained with MUSIC CARE to work with Seniors in Long Term Care who were experiencing dementia and Alzheimer’s Disease. This is the path I travelled with my mom. My training with Music Care and Room 217 supported capacity building in selecting music that was played on my harp or chosen recorded music. The music centered on the care of the individual and their specific needs. My job was to determine the individual’s specific and select music to address these needs. The music selected helped to build community, support sleep, talk about life experiences, create a background landscape of sound, support connection to decrease isolation and loneliness, as well as coming alongside people dying. My training with Music Care helped me understand how to support people “where they were” physically, emotionally, and spiritually. Through using beat, tempo, melody, and timbre, I could cater the music and desired support required for individuals or small groups. My profession is teaching. I am a special education teacher and use music in my primary teaching as a method for learning, practicing language skills, transmitting information about science studies or math equations, as well as having fun and creating our own songs. My teacher toolkit married exceptionally well with the knowledge and skills provided by the Music Care Certification training. Recently, my work with students has involved individual programming for the medically fragile children and the palliative children. I use music (repeating the chorus several times) to engage and connect with the kiddos. We use music to "talk" about feelings (our communication is through eye gaze, eye blinks, and squeezing hands), and content material. I use music to enjoy our relationship of being together. At times, due to medication for seizures, my little ones can be very sleepy. I increase the tempo, engaging in tapping the beat on her hands and using silly action songs. The giggles and wiggles make it magical. I also use music to tell stories (my students have CVI, cortical vision impairment, so visual perception is difficult). This helps the child to engage in the story arch and adventures. Music is my conduit for reaching out and being with the students. Recently, I had the sacred journey of visiting one of my children in ICU at Sick Kids. I was invited to come to say "goodbye". A dear friend who was an ICU nurse in a different department told me (AKA, insisted) that I bring my harp with me. I wasn't sure if this would be appropriate for the family. However, with the permission of the mom, I bravely packed my harp up and took it to the Unit. It was a beautiful evening of talking with their mom and dad about how special their child was in my life. I played the kiddo's favorite songs and then ended with "The More We Get Together". The little one opened their eyes and stared at me. We hugged, and I left. They passed the next morning. I consider this time to be a sacred gift. Music Care Certification has given me the confidence and toolset to work alongside people and to journey together. It is a time a beautiful, difficult, or sacred time that I have been honoured to participate in.  Thank You
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