As a young person, I dreamt of being a professional musician. I sang in an internationally ranked touring choir from ages 10–18, I had the lead role in several musicals, I was the first chair flautist in my conference, and I went on to pursue a bachelor’s degree in vocal performance. College was hard: I spent the entirety of my first semester junior year foregoing social gatherings and treating myself like a professional athlete, because I was determined to be cast in the lead role of Nerone in a production of Monteverdi’s “L’incoronazione di Poppea” the following summer. As a natural extrovert, that level of isolation and independent work depressed me, but I persisted with the motivation that my sacrifice would be rewarded. When I was ultimately denied this role due to my short stature, something completely out of my control, I realized that a career in opera would never be right for me. I mourned the time I had isolated myself for the sake of the craft and decided that I needed to find a profession where I could work with others in a collaborative and helpful way. To do this, I needed to build a bigger box by gaining skills outside of opera and music performance.
I discovered the field of music therapy, and quickly decided that my next step would be to pursue educational training to become a music therapist: I would get to utilize the skills I developed during my undergraduate studies, while also helping other people. My interest in hospice began at a music therapy conference session in 2013, given by hospice music therapist, Dr. Lauren DiMaio. I was impressed by her descriptions of meaningful connections she made while providing care for terminally ill individuals and their families. I then went on to pursue a clinical internship in hospice with Dr. DiMaio. During my internship I fell completely in love with hospice and the hospice philosophy. While many people think of a hospice admission as dark and sad, I learned that hospice is a service that treats patients as whole people, prioritizing the psychosocial, emotional, and spiritual needs of patients and their families rather than solely treating physical ailments. The hospice philosophy centers dignity and autonomy for every patient.
When I became certified as a music therapist after my internship, I decided to begin working full time rather than immediately finishing my master’s degree, because I wanted to gain meaningful experience before committing to a research project. I began developing my master’s research project after seeking additional services for a hospice patient with dementia, who presented with severe depression and had very clearly stated that he missed attending church services. I contacted the chaplain on my team to refer her services, and was surprised when she dismissed my patient’s requests, reporting that his family had declined her services upon his admission, and stating, “people with dementia just say things like that sometimes.” Her immediate rejection confounded me, as I thought that the mission of hospice was to address all domains of pain for our patients: physical, social, emotional, and spiritual. In this case, my patient’s clearly expressed needs were not taken seriously, and he therefore received a lower quality of care compared with patients without cognitive impairments. He was put into a box due to his diagnosis and wasn’t treated as a whole person. I decided to explore this issue within my own discipline and was once again surprised to find that there were only two studies addressing the use of music therapy for patients with dementia receiving hospice services — studies which only looked at music interventions for agitation. There were countless articles about music therapy for people with dementia, and many about music therapy in hospice care, but only these two about hospice patients with the diagnosis of dementia.
In conducting the literature review my masters project, I was even further shocked to discover that a substantial group of people with dementia are dying in hospitals, long term care facilities, or at home, never receiving hospice or palliative care services. I learned that people with dementia often experience great levels of pain and suffering at the end of life, experiencing what many authors referred to as “bad deaths.” I became completely obsessed with consuming research about this subject. Thinking about all the patients I loved who had dementia and the idea that others like them could be suffering due to this diagnosis-based disparity began to keep me up at night. I would memorize the shocking statistics from articles and rattle them off to anyone who would listen, about how people with dementia received significantly less pain medication than people with other diagnoses, about the burdensome interventions so many experienced near the end of life, and about the inhumanity imposed by viewing people with dementia strictly by their diagnosis, and not as people. After I finally finished my masters’ thesis, I knew I wanted to do more to help improve end-of-life care for people with dementia but felt limited by my very specific music therapy training. Once again, I needed to find a way to build a bigger box.
My local social network serendipitously led me to discover Dr. Cara Wallace, a social work researcher at SLU studying end-of-life care. I was accepted to SLU’s social work PhD program as a research assistant for Dr. Wallace, who currently holds two NIH grants and a cambia foundation grant. Dr. Wallace and I share the goal of promoting equitable access to high quality end of life care, and I have seen firsthand how her grant funded work has allowed her to focus on important and overlooked issues in hospice care access and utilization. I have already widened my box greatly by pursuing a PhD in social work, but grant writing is the next step to making an even bigger box.