The Experience of Music Therapy Within Medical Assistance in Dying
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EXIT MUSIC: THE EXPERIENCE OF MUSIC THERAPY WITHIN MEDICAL ASSISTANCE IN DYING by SarahRose Mary Black A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Faculty of Music University of Toronto © Copyright by SarahRose Mary Black, 2020 Exit Music: The Experience of Music Therapy within Medical Assistance in Dying SarahRose M. Black Doctor of Philosophy Faculty of Music University of Toronto 2020 Abstract Since the 2015 legalization of medical assistance in dying (MAiD), healthcare professionals across the interdisciplinary spectrum have been exploring their roles within this practice, and a number of professions have created guidelines and policies to define their role(s). Many Canadian music therapists also found themselves implicated in care for those requesting MAiD. No prior research has been done to gain insight into the role of music therapy within the context of MAiD. This qualitative hermeneutic phenomenological study, the first of its kind, examines the experience of music therapy within medically assisted dying from three perspectives: the patient, their primary caregiver, and the music therapist/researcher. Ten cases that vary in duration of involvement of the music therapist, demographic, characteristics, and nature of the music therapy are presented through a hermeneutic phenomenological methodology lens. A total of 24 music therapy sessions and seven caregiver interviews were transcribed and analyzed. A total 28 researcher reflections were analyzed. The analysis of data revealed thematic trends of life reflection activated by the musical interaction (wherein the music functioned as a narrator and a trigger), control (over musical and ritualistic ii choices), communication and connectedness (with the self and others through music), and aesthetic pleasure (as a catalyst for therapeutic outcomes such as pain and symptom management). Caregiver participant results revealed trends of immediacy of access to emotion through music, reflection (on personal narratives within music), witnessing (of patients’ emotional and narrative expressions), and unexpected opportunities (for life review through music). Researcher reflection data analyses revealed thematic trends of trusting (in the midst of uncertainty), witnessing (of the unfolding of narratives through music), therapeutic relationship creation (with a sense of immediacy), and support for patients and caregivers in their navigation of their MAiD processes. These results may have implications as to how music therapy is offered, standardized, and implemented in settings where MAiD is provided, as the overarching thematic findings show therapeutically beneficial outcomes in terms of quality of life, life review, and symptom management. Further research is merited to continue to explore the role of music therapy in the context of assisted dying. iii Acknowledgments It takes a village to complete a PhD. I am grateful to many, especially (though not limited to) the following people… To my co-supervisors, Dr. Lee Bartel and Dr. Gary Rodin. Dr. Bartel, thank you for believing in me through multiple iterations of academic pursuits, from my undergraduate work through my doctoral studies, and for always seeing a music therapist in me, well before I saw one in myself. You have always had my back and have supported me in times when I felt academically isolated and highly doubtful of this work. I am immensely grateful for your unending care, consistent encouragement, your level-headedness, and brilliant perspective. Words cannot fully express my gratitude to you. Dr. Rodin, thank you for supporting me not only in building the music therapy program at Princess Margaret and Kensington Hospice, but for seeing potential in my role as a researcher. Your unwavering belief in the therapeutic power of music has built my confidence, encouraged my critical thinking, and offered me incredibly unique opportunities. Thank you for instigating a radical and intuitive shift in my dissertation direction. Your ideas and perspective have shaped my clinical thinking, and I am deeply grateful. To my committee members: Dr. Joanne Loewy, thank you for your pioneering work in the field of music therapy, and all of your inspirational research and clinical contributions. My deepest appreciation goes to Dr. Linda Cameron and Dr. Brian Abrams, for their generous support and rich expertise. Taylor Kurta, thank you for being the best research assistant! You believed in this data and in the questions we were asking, and I am grateful for all of your efforts and your friendship. To the University Health Network MAiD coordinators: R.J. Edralin and Jessica Lam, you two have been a driving force behind my capacity to implement this study and connect with patients and families. Dr. Madeline Li, I’m so grateful for your ongoing support of music therapy; your pioneering development of the MAiD program at UHN is inspiring. Dr. Gerald O’Leary, your ability to delicately balance the art and science of medicine is unparalleled. It is a tremendous honour to work alongside you, and to learn from you. To my pal Dr. Joshua Wales, I have deeply admired the ways in which you have intertwined medicine and music. Thank you for always supporting me. To an incredible group of research colleagues: Ekaterina An, Carmine Malfitano, Dr. Sarah Hales, Dr. Rinat Nissim, Dr. Amy Deckert, Dr. Jennifer Bell, and Anne Rydall. You’ve all been so generous in helping me sort out the ups and downs of REB applications, writing up protocols, and generally offering the best support I could ask for. Dr. Chana Korenblum, thank you for dreaming big with me and for working together in the most wonderful, collaborative ways. To my PhD sister Maxxine Rattner. Thank you for being there every step of way and for believing in me. I couldn’t have done this without all our chats, shared experiences, and hugs. To my team at the Department of Supportive Care, The Princess Margaret Cancer Foundation, and PMH 16P, especially Drs. John Bryson, Ernie Mak, Breffni Hannon, Chris Blake, Camilla Zimmermann and Jenny Lau, and Trish Murphy-Kane, thank you for believing in music therapy from day one; Catherine Dirks for helping me connect to participants and always supporting my clinical and research pursuits. 16P Nurses, you are angels and I am privileged to learn from you every day. Thank you to Kensington Hospice: Drs. Haley Draper, Nadine Gebara, Katie Marchington, and Warren Lewin; to our heroic nurses, and iv incredible volunteers. To Debbie Emmerson, thank you for the autonomy to pursue this path and trusting me in my goals. Dearest friends: Tanya Andrusieczko, best friend of 19 years, incredibly generous and genius copy editor, my gratitude to you is beyond words. Thank you for always being there with a brilliant, helpful, and compassionate heart and mind, and perfectly timed phone dates. Thank you for taking this dissertation and nurturing it with your expert care. My dearest childhood friends Kim Castellano and Daniela Sinisi for the endless love, and for always celebrating all the big and little moments; Phil Mardimae for supporting me with immense kindness; Stephen Sinisi, for encouraging my writing and holding these narratives close. Matthew Baxter for keeping me honest and asking amazing questions; Kristen Walker for being the most caring and kind cheerleader; Robyn Cross for your incredible generosity of spirit, humour, and care; Amanda Wolfe and Lauren Hutton, professional inspirations and personal phenomenal friends; Sarah Pearson, Aimee Berends, and Naomi Rachlis, my music therapy sisters, with me through every experience, believing in me with such love; Dr. Peter Friedman, for unfailingly lifting my spirits, and always welcoming me into your home with love and a cocktail. And to my marvelous musical counterpart Dr. David Loach, for your clinical inspiration, constant love, ever-present support, and for grounding me in the music we both adore. Thank you to the University of Toronto’s Faculty of Music, most especially Drs. Bina John, Lori-Ann Doloff, and Amy Clements-Cortes, for always believing in me. To Dr. Colin Andrew Lee, you gave me my footing in the profession, and I am a music therapist because of what I learned from you. Bev Foster and the Room 217 team, thank you for constant kindness. Dr. Max van Manen, your writing has been profoundly influential, and came as a guiding light at a difficult time. Your phenomenology of practice opened my mind and truly is a perfect fit for the nuanced work of music therapy at the end of life. I feel indebted to the album “Carrie & Lowell” by Sufjan Stevens. It helped me sit with and process the stories, the lives, and the deaths. Catherine Haire, in times when I felt especially isolated, just knowing that we were traversing this path together was incredibly supportive. To a wonderful musician and righteous human, Harley Haskett. Thanks for the title, my friend. I owe you. I would be nothing without my family. To my Mom & Dad Martha & Patrick Black, thank you for my first boost up onto the piano bench as a little kid. Thank you for never questioning my path, believing in everything music had to offer me and the world around me, and for hundreds upon thousands of hours of listening, supporting, encouraging, caring, and motivating me to work hard, dream big, and care deeply about this work. Michelle, my brilliant sister, the first person to introduce me to Leonard Cohen: you consistently pursue incredible feats of academic, professional, and personal strength, and I have and will always admire you. My brother Paul, thank you for teaching me the power of lyrics, of nostalgia in music, of telling stories. Your ability to narrate human experience has always been a huge inspiration. To my godmother Maria Scavuzzo, thank you for a lifetime of unlimited care, love, and tremendous support. Tony & Mariarosa Ascenzo, my amazing parents-in-law, you’ve supported me, cared deeply about my work and my interests, and have always been there for me through the rollercoaster of this process.