Several years ago, I met Brian*, a young adult who was living with stage 4 lung cancer. The highly aggressive disease had metastasized to multiple parts of his body, including his brain. In our lengthy conversations over many music therapy sessions at the hospital, I was struck by his focus on legacy. He told me he was constantly wondering if and how he would be remembered. At only 27 years old, he was at once youthful and existentially weighed down by the reality of the disease progression, eager to soak in as many experiences as he could while being mindful that his time was limited. As a music therapist, I often focus on “legacy work” through songwriting as a vehicle for creative self-expression but also as an offering to the patient’s family. The songs I write with patients who are receiving palliative and end of life care often represent that which holds meaning to them. We write songs for loved ones, about loved ones, about oneself, about hopes, dreams, regrets, ideas, and reflections. Sometimes the patient wants to infuse humour, other times the lyrics and chord progressions are pensive, even melancholic. However, the songs come together, they always serve as a form of legacy. Perhaps that is an intrinsic outcome of songwriting: it’s inherently representative of a point in time and can be revisited as a reflection of that moment, of that person, of that experience or relationship.

In one of our music therapy sessions, I introduced the idea of songwriting to Brian, who immediately connected with the concept and told me he’d be thrilled to try it, though he wasn’t sure what he wanted to say or how the process would unfold. Together, over several weeks, he and I crafted lyrics, which he would later speak atop a chord progression we created. He told me he wanted the chords to feel “deep, painful, yet hopeful,” a contrast which he named as his own current reality, as he was balancing living while dying. I had heard of other music therapists recording patient heartbeats with a stethoscope and using the audio as a backing track of sorts, a rhythmic line that threaded through the song. Having just been generously gifted a digital stethoscope from a community organization, I knew in my own heart that Brian would be the perfect first patient for me to create a heartbeat recording with at the hospital. With a little help from my nursing colleague, we recorded Brian’s heartbeat, embedded the sounds into the track he and I had written and recorded, and a few days later, presented it to his family. Brian died several months later but his vitality remains embedded into the song he wrote, both in the music and lyrics but also in the acoustic representation of his life force: his heartbeat.

Over the past several years, music therapists have been using heartbeat recordings as legacy work with patients and families in a number of settings including but not limited to oncology, pediatric intensive care units, and hospices. Last year, together with the Adolescent and Young Adult (AYA) Oncology Program at Princess Margaret Cancer Centre, the Music Therapy Program launched a “Heartbeat Recording for AYAs” research project where we will be writing songs with this patient population and researching the lived experience of the legacy work and heartbeat recording for these patients. We’re so thrilled to be able to carry on this work as a research endeavor and hopefully come to a richer understanding of the impact of this songwriting approach. When I reflect on the work Brian and I did together, I’d like to think he would be excited to see this type of legacy work expanded for adolescents and young adults. Perhaps his courage to be the first patient to trial this experience is part of his legacy, too, and I will be forever grateful.

Dr. SarahRose Black PhD RP MTA is a certified music therapist and registered psychotherapist, specializing in palliative care and psychosocial oncology at the Princess Margaret Cancer Centre, and her private psychotherapy clinic (Whole Note Psychotherapy) in Toronto, Ontario. She is a pianist, vocalist, and music health educator, and has performed, taught, and presented on her clinical work and research across Canada.