In honor of National Hospice and Palliative Care Month, we are celebrating the hospice and healthcare workers who hold the hands and hearts of our patients and their families every day. In tribute to the physical, emotional and spiritual work they do, each blog this month will bring you an up close look at how they bring compassionate care to patients and families in extraordinary ways. We hope you will be inspired by these stories which shine the spotlight on these everyday heroes.
As a music therapist for hospice and palliative care patients, I feel incredibly grateful each day that I have the privilege to do this unique work. This November I reflect on National Hospice and Palliative Care Month, and realize I can honestly say that I absolutely love my job and the work that we do here at JourneyCare.
In my journey as a music therapist, I experience so many touching moments with our patients. But what makes my work especially worthwhile are the “WOW” or breathtaking moments. And sometimes, when I least expect it, a “nice” visit can become one of my best.
Moments matter. This phrase has been on my mind as I reflect lately on my work as a music therapist and as a hospice worker. From a simple smile and “good morning” to the woman sitting alone in her chair, to an entire team coming together to surprise a patient with a birthday party, I’ve seen how much this rings true.
Last December I had the pleasure of visiting a retired artist and teacher. His advanced prostate cancer left him with pain throughout his body, and his bladder spasms and infections had helped to slowly cease his social life. He was referred to music therapy services to elevate his mood and lessen social isolation, to promote reminiscence, story-sharing, and life review, and to refocus him away from feelings of pain and discomfort. As with all clients who I see for music therapy, I have the wonderful challenge of finding how music interventions can assist in easing identified symptoms. Knowing that the brain can only take in so much information at once, using Brian’s* preferred music held his attention and engaged him in enjoyable and meaningful moments, pulling his focus away from his pain. The perception of his pain and discomfort lessened as we sang together and talked about the music he loved throughout his life.
‘Tis the season of comfort and joy. How is that possible working with Jewish patients in hospice? That’s not as much of a challenge as might one think. As a Jewish Care Service Ambassador, I have the wonderful opportunity to visit with our Jewish hospice patients and provide Jewish support and companionship.
Music therapists use a range of musical techniques to help hospice patients relax, express feelings and recall significant experiences from their lives. Using both instruments and voice, music therapists encourage pateints to sing along with them or will help patients write songs to leave as a legacy for the people they love.
I don’t think I will ever forget one of my first experiences working as a full-time music therapist in hospice. Fresh out of an internship and living in a new city I realized I had some growing to do. I can remember my first couple of visits with one gentleman in particular. At the time, I was referred to help him with anxiety and processing of his illness. Strong, independent, and very open about what he wanted and didn’t, he was of course a little hesitant of the young woman walking in with a guitar ready to sing — wanting to know exactly how I could help him.
Drawing on their musical and clinical palliative care training, music-thanatologists use harp and voice to address physical, emotional and spiritual suffering at the end of life. Using music prescriptively, they vary the tempo and tone of music to respond to changes occurring in a patient's body, like a slowing of pulse and breathing, in the final hours of life. During their visits — music vigils — they alternate sound and silence to help patients and loved ones relax and rest.
Rebecca is actively dying. Her breaths have become agonal, and her skin is gray. Her cousin and I arrive at the same time, and together we sit by her side, offering her comfort.
One aspect of working with the dying that doesn't get the attention that it deserves is self-care. In our modern world, there is every incentive to go faster and do more. When faced with actual, honest-to-goodness life and death circumstances, caregivers and families can quickly go off the deep end and over-work, over-commit, or over-extend.
The funny thing is that when we hear the words "self care," we generally know what we should do, but we tend to not do it because we don't have time – a clearer example of irony would be hard to find. We know we should take a break, or go for a walk, or not eat that piece of candy, or count to ten, or take a deep breath, or get at least 30 minutes of moderate intensity aerobic exercise five days per week, or give 10 compliments per day, or have a regular spiritual practice, or have a creative outlet, or smile even when we feel like frowning. We know these things, but life (and especially death) get in the way of them.
The patient's breathing was labored and his forehead was warm and clammy when I arrived. His pulse was present, but irregular and quick. He opened his eyes widely and wildly in response to having a pulse ox placed on his finger. The facility staff was trying to address his respiratory distress, and the hospice RN came in to help. Not far behind the nurse was one of the patient's children. Through all of this, the musical prescription began—first a cappella, and then, after the patient's son arrived, the harp and voice together helped ease the patient's respirations.