Music at the End of Life: Easing the Pain and Preparing the Passage

Music at the End of Life

Recent Titles in Religion, Health, and Healing Among the Healers: Stories of Spiritual and Ritual Healing around the World Edith Turner Kabbalah and the Spiritual Quest: The Kabbalah Centre in America Jody Myers Religion and Healing in Native America: Pathways for Renewal Suzanne J. Crawford O’Brien, editor Faith, Health, and Healing in African American Life Stephanie Y. Mitchem and Emilie M. Townes, editors Healing the Soul after Religious Abuse: The Dark Heaven of Recovery Mikele Rauch

Music at the End of Life Easing the Pain and Preparing the Passage

Z Jennifer L. Hollis

RELIGION, HEALTH, AND HEALING Susan S. Sered and Linda L. Barnes, Series Editors

Copyright 2010 by Jennifer L. Hollis All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, except for the inclusion of brief quotations in a review, without prior permission in writing from the publisher. Library of Congress Cataloging-in-Publication Data Hollis, Jennifer L. Music at the end of life : easing the pain and preparing the passage / Jennifer L. Hollis. p. cm. — (Religion, health, and healing) Includes bibliographical references and index. ISBN 978-0-313-36220-0 (hard copy : alk. paper) — ISBN 978-0-313-36221-7 (ebook) 1. Music thanatology. I. Title. ML3920.H635 2010 780.87'7—dc22 2010002195 ISBN: 978-0-313-36220-0 EISBN: 978-0-313-36221-7 14

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This book is also available on the World Wide Web as an eBook. Visit www.abc-clio.com for details. Praeger An Imprint of ABC-CLIO, LLC ABC-CLIO, LLC 130 Cremona Drive, P.O. Box 1911 Santa Barbara, California 93116-1911 This book is printed on acid-free paper Manufactured in the United States of America

To my parents

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Contents

Series Foreword

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Acknowledgments

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Introduction Chapter 1 Building a Harp, Building a Life

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Chapter 2 A Confluence of Ideas: Historical Influences on Music-Thanatology

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Chapter 3 An Introduction to Music-Thanatology

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Chapter 4 Stories from the Bedside

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Chapter 5 Prayers, Resumes, and Nightline: Music-Thanatologists Consider Vocation

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Chapter 6 Integrating Music-Thanatology into Medical Institutions

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Chapter 7 Encounters with Death: Music and Transformation

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Resources

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Bibliography

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Index

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Series Foreword

The “Religion, Health, and Healing” series brings together authors from a variety of academic disciplines and cultural settings in order to foster understandings of the ways in which religious traditions, concepts, and practices frame health and healing experiences in diverse historical and social contexts. The present volume offers extraordinary insights into the work of contemporary music-thanatologists. These professionals provide hundreds of Americans with what can be considered the ultimate healing: helping dying patients and their loved ones through the transition from life to death. Jennifer Hollis, herself a music-thanatologist, shares her sense of the power of music to soothe the body as well as the soul, creating a “sacred space” even in high-tech hospital rooms. As Hollis writes in this book, “When we move past what medicine can cure, outside the reach of language, and beyond what we feel we can bear emotionally and spiritually, the unique qualities of music and a loving presence can provide comfort, breathing room, and the hope for peace.” The stories that emerge from these moments at the bedside can provide hope and insight to those who suffer from a terminal illness and those who care for them, as well as insights into the very meaning of healing. In this volume, as in other books in this series, we see that the word healing in and of itself is multidimensional and multifunctional. It can mean the direct, unequivocal, and scientifically measurable cure of physical illnesses. It can mean the alleviation of pain or other symptoms. Healing can mean integration and connection among all the elements of one’s being, reestablishment of self-worth, connection with one’s tradition, or personal empowerment. Healing can be about repairing one’s relationships with friends, relations, ancestors, the community, the world, the Earth, and / or God. It can refer to developing a sense of well-being or wholeness, whether emotional, social, spiritual, physical, or in relation to other aspects of being that are valued by a

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particular group. It can also mean coping, coming to terms with, or learning to accept that which one cannot change. Healing, as it is described in this book, has to do with almost all of these elements: reducing pain, connecting with loved ones, emotional and spiritual growth, and finally — transitioning into death. Perhaps the most common theme in accounts of healing is the enactment of change, whether understood as restoration to an earlier state or as transformation to a new one.1 The transformation that comes about in the healing process implies movement from one, less desirable state, to another, more desirable state. Thus, the study of religion and healing includes looking at how individuals, communities, and religious traditions diagnose and interpret causes of illness and misfortune, as well as practices aimed at addressing affliction both ideally and pragmatically. This volume, together with other books in this series, grapples with a core challenge faced by all healing practitioners: Healing is not only about belief or ideology but also, more importantly, about transforming real, tangible suffering. In his classic work on Brazilian religion, Roger Bastide coined the phrase “law of accumulation.” By this he meant the different efforts made by ritual experts to maximize the effectiveness of their healing work by accumulating a wide repertoire of ritual techniques.2 Bastide’s law aptly describes contemporary spiritual seekers making their way through the complexities of international, globalized, and mixed religious cultures. Indeed, music-thanatology combines elements from medieval Christianity, modern psychology, music theory, spiritual care, and hospice and palliative medicine. Yet, as Hollis shows, this mixture — performed with the intent to heal — is experienced as authentic by both practitioners and patients. We hope that through facilitating the publication of studies of diverse healers, healing communities, and healing practices we will offer readers tools to uncover both the common and the uncommon, the traditional and the innovative, and the individual and the communal ways in which Americans engage with, find meaning in, and seek to embrace, transcend, or overcome affliction and suffering. Susan Sered and Linda Barnes Boston, Massachusetts January 2010 NOTES 1. For more on this, see Linda Barnes and Susan Sered, eds., Religion and Healing in America (New York: Oxford University Press, 2005). 2. Roger Bastide, African Civilizations in the New World (New York: Harper and Row, 1971).

Acknowledgments

This book has truly been a collaborative effort. Dr. Susan Sered offered the initial idea of a book on music-thanatology, and was a mentor at every stage. Her guidance and encouragement were essential as I developed the shape and scope of the book. Dr. Linda Barnes offered excellent advice and an essential edit of the final draft, and I am indebted to both Susan and Linda for their tremendous support. I would like to thank Suzanne Staszak-Silva at Praeger/ ABC-CLIO for her enthusiasm and assistance at the start of the project. Along with the copyediting team at Apex CoVantage, I would like to thank Michael Wilt at Praeger/ABC-CLIO, who provided feedback and guidance on the final manuscript while patiently fielding my innumerable questions. Throughout the research process I was sustained by a remarkable community of colleagues, and this book could not have been written without them. As I traveled to meet with them, they opened their personal and professional lives and shared a depth of wisdom and experience. I would like to particularly acknowledge and thank those who hosted me at their workplaces, provided introductions, and helped to coordinate interviews: Gloria Viglione in Denver, Colorado; Kristin Gover, Margaret Pasquesi, and Tony Pederson in Glenview, Illinois; Jane Franz, Gary Plouff, Sr. Vivian Ripp, and Robert Scheri in Eugene, Oregon; Laura Lamm and Andrea Partenheimer in Portland, Oregon; and Jeri Howe and Claudia Walker in Everett, Washington. Music-thanatologists and their colleagues who were not interviewed in person made themselves available by phone, and still others contributed an enthusiastic willingness to participate, even if our schedules did not allow for an interview. Each conversation made a contribution to the development of the book’s themes and to my own understanding of music-thanatology. My deepest appreciation goes to those who read drafts of these chapters. These include Marilyn Denton, Maia Evrona, Judy Fay, Cheryl Giles, Rosemary Suozzi Lloyd, Jan McArthur, Beth Cavaliere Parker, Margaret Pasquesi,

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Stephanie Paulsell, Tony Pederson, Sr. Vivian Ripp, Sebastian Stockman, Judy Theriault, and Kristin Willcox. The patience, insight, and good humor of these readers has been a true gift and has vastly improved my writing. I would like to thank Therese Schroeder-Sheker and the staff and faculty of the Chalice of Repose Project for their foundational work in the field of music-thanatology. I am particularly grateful for Therese’s writing on the subject, which was a rich resource for this book. The Lahey Clinic Medical Center has been a wonderful place to be a music-thanatologist and I treasure the opportunity to help care for their patients. I am grateful to Dr. Elizabeth Collins and the members of the Palliative Care Service for the many ways they open the door to this work. My colleagues at Harvard Divinity School were more than gracious as I balanced my work life with this project, and I have been supported by an amazing community of family and friends. In particular my parents, Kenneth and Nancy Hollis, and my brother and sister-in-law, Adam and Courtney Hollis, offered enthusiastic support at every stage. George Bevis listened kindly, kept me fed, and reminded me that writing is a task to be done joyfully. Teresa Santalucia offered sound advice, free laundry, and the unwavering confidence in my writing that I have relied on since we were teenagers. Sara Spoonheim’s boundless friendship has accompanied me on every part of my journey as a music-thanatologist, including the summer I built a harp on her kitchen table. Finally, I offer my heart’s gratitude to the thousands of patients and families who have welcomed music-thanatology into their lives.

Introduction

Music-thanatology is a young field. Founded in the 1970s by Therese Schroeder-Sheker, its practitioners provide live harp and vocal music at the bedside of dying patients. During these music vigils patients report relief of suffering from physical, emotional, and spiritual pain. Their family members may find an opportunity for rest, relaxation, and expression of deep emotions, which in some cases they have never had an opportunity to release. Staff members report a change in the atmosphere of the biomedical setting, from a reliance on medication and procedures to a sacred space where they too can reflect on their work in end-of-life care. Music vigils typically last from 30 to 60 minutes. During this time, patients and family members can respond to the music in any way that is appropriate for them. They may simply close their eyes and fall asleep, or they may cry, say good-bye, or sit quietly together. Music vigils may come early in a patient’s disease process or within the last few hours of life. Music-thanatologists may be called in for particular procedures, such as removing a patient from ventilator support. Dr. Martha Twaddle, of Midwest Palliative and Hospice CareCenter in Glenview, Illinois, has fully integrated music-thanatology into the removal of ventilator support for patients: “Our gold standard for ventilatory withdrawal is music-thanatology.”1 The music vigil provides a different experience for the patient, family, and staff. Before she hired the two music-thanatologists at Midwest CareCenter, Dr. Twaddle reports that there were few people in the room when a ventilator was removed. She remembers a particular patient who had been in an ICU for three months after complications from surgery. His daughter was struggling with the decision to remove her father from ventilator support, and Dr. Twaddle encouraged her to ask her father what he wanted. When the daughter asked him if he wanted the tube removed from his throat, her father gave

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a thumbs-up sign. His daughter then asked if he understood that he would not be able to breathe on his own. He gave a second thumbs-up sign. Finally, the daughter asked if he understood that without the ventilator, he would die. The man gave a big thumbs-up, and the daughter collapsed in his hand, sobbing. Dr. Twaddle refers to this moment as “the patriarchal blessing.” The man and his daughter agreed to remove the ventilator. Dr. Twaddle explained to the daughter what would happen next: “What we’re going to do is we’re going to come in and ease him off this ventilator so that it causes him no distress.” She explained that she would have some people with harps come to help support this transition. The daughter was surprised by the idea of music in the situation, but agreed to it. When the music-thanatologists arrived, they joined the daughter at the bedside. They offered live music to accompany the patient and his daughter as the man was eased off the ventilator and began to breathe on his own. Dr. Twaddle was focused on the patient and his daughter and did not realize how many people had lined up outside once they heard the music. And I turned around and the entire room was lined with people. . . . When I walked out the head nurse grabbed my arm and said, “We needed this so much. We needed this. Thank you.” It was so powerful for everybody. To be reminded that this outcome is not bad. You haven’t failed this guy. Look at what you’re doing for him.

The man was stable, but staff members were so committed to his care that they asked to keep him there, rather than moving him to a hospice unit. He lived through the night. He and his daughter received the Christian sacrament of communion in the morning, and the man died about an hour later. Dr. Twaddle believes that the music vigil provided an “affirmation of the sacred” for everyone. She says, “It takes it out of the medicinal, mechanical, high–tech.” As a result of this sacred moment, those who witnessed the music vigil felt at peace: “People felt so good about it, even though he died, and even though they had to take him off the ventilator.” This book will explore the ways in which music-thanatology affirms the sacred while providing clinical care to patients at the end of life. Using voices from practitioners, family members, and patients, as well as physicians, nurses, social workers, chaplains, and other professionals, it paints a picture of the ways in which music-thanatology has been integrated into modern biomedical settings. It will reflect on the ways in which this live harp and vocal music offers medical, emotional, and spiritual care, and the implications this care has for the way patients die, as well as the way practitioners and other staff relate to death and the dying process. Relating to death and dying in a new way is no small task. Death, though constantly visible in news reporting, television, and movies, is increasingly

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detached from our daily life experience. When someone we know is sick, that process happens apart from familiar spaces, most likely in a hospital, and is conducted by medical experts. We don’t always know what to say, or whether to visit or stay away, even when that person is close to us. When he or she is no longer able to fight the disease or hope for a cure, the transition to end-of-life care can be disorienting for everyone. Patients, families, and staff members must make a dramatic shift in their thinking—from cure to healing, from holding on to letting go. Hospice and palliative care professionals can help navigate these new waters, but rituals, images, and resources in the popular culture, which might serve to guide us, are limited. When medical technology and a rigorous treatment plan have been unable to cure the disease, it is possible for patients and their family members to find the courage to accept the task of letting go, even as they struggle with their grief. The opportunities for healing, resolution, forgiveness, and transformation that arise from this acceptance are innumerable. But how can any of us find the courage, in a moment of loss, to remain present, to say the important words or reach out to those we love? How can we accept death when loss threatens to change life as we know it? The stories in this book agree that it is beauty, intimacy, and meaning that can transform the suffering found in these moments. When we move past what medicine can cure, outside the reach of language, and beyond what we feel we can bear emotionally and spiritually, the unique qualities of music and a loving presence can provide comfort, breathing room, and the hope for peace. It is not only patients and families who long for an experience of meaning in end-of-life care. During their busy days, juggling a multitude of tasks, staff also craves the calm and stillness of the music vigil. One hospital chaplain shared that staff members are so affected by the music that they try to “sneak into the room while a vigil is going on.” He offered a poignant image of the deep craving for music he sees: “I’ve seen nurses standing outside the door of the vigil with their ear pressed up against the door, listening.” This image reflects what one music-thanatologist noted in our conversation—that most of us are bereft of beauty. Music-thanatology offers a vision for understanding death and dying in a new way: accompanied by the beauty of music within the meaningful space of the music vigil. This is not intended to be a complete picture of the field of musicthanatology. I interviewed music-thanatologists about their training and experience in the field, their reflections on death and dying, the stories that have stayed with them, and whether they feel they have a call or vocation for this work. As it was necessary to limit the scope of this project, I focused primarily on those practitioners who work within the United States. The interviewees were primarily people I knew who had time for an interview or who approached me and offered to participate. The interviews with administrators, physicians, nurses, social workers, chaplains, and other professionals

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were facilitated by my conversations with music-thanatologists, who made introductions and in most cases scheduled the interviews for me. These interviews included questions about how music-thanatology is introduced and understood at their institutions, what they believe the modality does for patients and families, and if there were particular stories they could recall from a music vigil they had experienced. The interviewees were incredibly generous with their time and reflections, and they shared with me how they would like to be identified. Occasionally, I chose to conceal the identity of an interviewee, or make small changes to his or her story, if I felt that the material was particularly sensitive. In the end, it is not only patients, families, and staff that are impacted by the role of music in end-of-life care. It is also music-thanatologists themselves. Those I interviewed echoed a profound gratitude for the opportunity to be present with dying patients and their families. They believe it has taught them something not only about death and dying, but also about living. This is true for me as well. One of the best pieces of advice I’ve ever received as a music-thanatologist came from a family for whom I never played any music. After a receiving a physician’s referral, I brought my harp to the hospital to offer music to a patient and his wife. When I arrived, the door was closed. I knocked softly and was invited in. I greeted the man and his wife, who were middle aged. The man was lying in the bed, and his breathing was extremely slow, regular, and shallow. I noticed immediately that he seemed to be actively dying. His wife sat next to her husband. There was soft music playing in the corner of the room. She beamed at me, getting up to shake my hand. “You’re the harpist!” she said. “Thanks for coming.” I thanked her for having me. As I continued to listen to her husband’s respirations and watch his coloring, it became clear to me that he probably only had hours to live. I told his wife that my harp was in the hall and asked if she would like some music. She smiled broadly. “Well,” she said slowly and kindly, “We’re hippies from the ’70s. That’s not really our kind of music.” She pointed to a small CD player with soft music coming out of it and a pile of CDs in the corner of the room: “This is more our style.” “That’s fine — thanks for telling me,” I said. She got up to turn down the music. She told me about her husband’s lifelong love of music, and all the concerts they had seen together. Then she told me about how considerate the staff at the hospital was and how much she appreciated the things they were doing to make them comfortable. She asked me some questions — where I lived and how long I had been playing the harp. Then she stopped and looked at me. “You know, right now I’m feeling very calm.” She glanced at her husband. “Next week I know I’m going to be hysterical. But today, I feel really calm. And I’m going to tell you something.” I waited. “We’ve been married for a

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long time. And he’s not going to make it to retirement. So I’m going to give you some advice.” “Ok,” I said. She paused. “Eat the cake.” I nodded. After watching so many people say good-bye to one another, I knew she wasn’t talking about dessert. “That’s real wisdom,” I said. “I mean it. You just don’t know what’s going to happen.” NOTE 1. Quotes throughout this introduction are from an interview with Mary Sheehan and Martha Twaddle, May 28, 2008.

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CHAPTER 1

Z Building a Harp, Building a Life

I was 21 when music-thanatology arrived in my life as a magazine article in a pile of mail. I had no premonition of the impact it would have. I had just returned from a summer internship in Spain. I was about to begin my senior year of college. After graduation, I wasn’t sure exactly what I would do, but it seemed likely that I would get a job as an elementary school teacher on the East Coast. If you had told me I was about to move to Montana to become a musician for dying patients and their families, I would have laughed. I had never touched a harp, had no experience with the dying, and could hardly find Montana on a map. The opportunity to be a musician in a new way was what first captured my imagination about music-thanatology. I had always loved music, and by high school, I had taken lessons on several different instruments — piano, flute, cello, and even a few strange weeks on the trombone. I was active in music groups, from marching band to show choir to an a cappella group. But my musical life was always extracurricular. I found performance nerve racking, so it didn’t seem likely that I would become a concert pianist. Also, my overall professional plan was to save the world, and I wasn’t old enough to understand that this can be — and often is — accomplished through music. But once I had time to reflect on the idea of music-thanatology, I realized that I had found something that would allow me to have music at the center of my life, would feed my interest in spirituality, and would meet my longing to be of service. At a moment of transition and change in my life — my graduation from college — it arrived quietly, slowly encouraging me to reconsider what I knew of myself and what my life was going to look like. MOVING TO MONTANA The article that introduced me to music-thanatology appeared in the Connecticut College Magazine. Written by medieval historian Frederick S.

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Paxton, a professor with whom I had studied as a student at Connecticut College, it described his work as a member of the faculty at the School of Music-Thanatology at the Chalice of Repose Project in Missoula, Montana. The article described students who were learning to use live harp and vocal music for patients who were dying. It was intriguing, offering a vivid picture of the environment of the school, the focus of the musicians’ work, and the energy and efficacy of the music. He discussed the role of his research on medieval monasteries in its curriculum. I made a note of the address so I that I could send away for more information. Once the packet arrived, detailing the curriculum and admissions process, I became fascinated. Music-thanatology seemed an unexpected, but excellent, fit with that moment in my life. I was an active musician who did not want to be a performer. I was dedicated to service but passionate about creativity. And I was open to a brand-new idea. Music-thanatology combined my desires in a way that I had never imagined possible. Although the school was on the other side of the country, it seemed exciting and worthwhile to seriously consider attending. The school accepted new students every two years, and it would be another year before I could apply. I decided to move a year ahead of time in order to find an apartment and a job while continuing to make a decision about entering the school if I were admitted. In a somewhat miraculous turn of events, my friend Sara agreed to come with me. Sara and I met on the first day of freshman orientation, and after a few long conversations at the local Thai restaurant, we became inseparable. When I decided to move to Montana, I invited her to come. I couldn’t believe my luck when she said yes, agreeing to meet me in Missoula at the end of her drive from New Mexico. Needless to say, my parents hoped that my postcollege plans would involve a more definite career trajectory. When I talked with them about my decision to move to Missoula, they wanted to learn as much about the city as they could, but it would be several years before the now-ubiquitous Internet would make this the work of a single weekend. Instead, they bought two subscriptions to the daily Missoula newspaper. They had one delivered to their home and the other delivered to my dorm room. The Missoulian came in batches of two or three every few days, and for months we talked about the advertisements, the housing prices, and the job listings. I worked two jobs all summer to save $3,000. This seemed like an enormous amount of money and definitely enough to fund a two-week cross-country trip, put down a deposit on an apartment, buy furniture, and pay for all my living expenses until I could find a job. My parents asked me nicely to please invite someone to come on the road trip. They offered to come with me themselves. They cajoled. They tried to insist. I refused. In the end, my parents bought a phone in a canvas bag that could be plugged into the car’s cigarette lighter and handed me a pile of maps with a trip

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planner from AAA. I had a car full of boxes, a copy of On the Road, a shoe box of Indigo Girls and Ani DiFranco tapes, and a pack of cigarettes hidden under the front seat. I was inventing a new vision of myself minute by minute, and I wanted to be alone to watch it unfold. After almost two weeks on the road, I spent the last night of my road trip in a hotel room in Miles City, Montana, after a long drive across North Dakota. I tried to flirt my way into a discount with the teenager behind the counter: “Do you have lower rates for girls moving across the country?” He laughed and replied, “Um, I can give you the AARP discount if you want.” I took it. I woke up the next morning and drove across Montana. The towns looked sparse from the highway, and I had never been to a place where there was space in between the towns, where it was possible to be out of one town but not yet in another. Finally, I saw what looked like huge clouds low on the horizon. It took me a moment to realize they were the Rocky Mountains. Billings, Bozeman, Butte. The cities passed by, and the landscape became greener. I drove into Missoula craning my neck toward the windshield to get my first glimpse of the city. Missoula was greener than Butte or Bozeman, at least from the highway, and I could see the river immediately. I didn’t know which exit to take, so I picked the one with the sign for the hospital, hoping that it meant St. Patrick Hospital, where the School of Music-Thanatology was located. I followed the blue and white “H” sign as I came off the highway. I quickly found myself in front of the hospital. I pulled over and parked the car. Standing on the sidewalk in front of St. Patrick Hospital, I looked up. I wanted to feel overwhelmed with certainty, see fireworks, and hear bells ringing to celebrate my arrival. I would have settled for the small coincidence of someone walking into the hospital with a harp. Instead, I stood in front of a gray stone building, with the front door sliding open and closed, open and closed, as people walked briskly in and out. There were no harps, no music streaming out of the windows, no feeling of déjà vu. It was a plain old Catholic hospital on a weekday in a Rocky Mountain university town. Sara and I quickly found a house to rent, furniture to fill it with, and jobs. After a few months, our lives fit right into Missoula, a friendly, overeducated city that was so beautiful that it was common to hear people say that a percentage of their salary was paid in scenery. APPLYING TO THE SCHOOL OF MUSIC-THANATOLOGY In December, the school held a public concert. The faculty and students made a distinction between the music they played for the dying and music for the living, and public concerts were a part of the music-thanatology

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curriculum. The music was exquisite, with small harp ensembles alternating with the large group singing and solo instrumentals. I was shocked to find myself in tears throughout a performance that was obviously prepared with love and care by an intimate community of musicians. I submitted my application and went through both telephone and in-person interviews. As I considered whether to enroll if I were admitted, I reflected on questions I had had throughout my life playing music. Was music inextricably intertwined with performance? What did it really mean to connect with an audience, even a small audience of only a patient and his or her family? I continued to long for a way to be both a musician and to be of service in the world. I wanted service to have beauty and music to have meaning. I knew that even if I completed the program, there was no guarantee that I would ever get a job as a music-thanatologist. In addition, I would have to work full time in order to support myself while I completed the rigorous curriculum, clinical internship, and certification process. On the other hand, I would be able to study music in a new way, within a community of fascinating people. I agonized for months, and then made a final decision. Whether by grace or inertia I didn’t know, but I decided to step into the unknown. BUILDING A HARP This decision meant that I needed a harp. I decided to build one myself. I wish I could say that I had been satisfying a lifelong dream of making an instrument by hand. Instead, the decision was economic. When the school suggested purchasing one of two harp models, I found that one of them, from a company called Musicmaker’s Kits, came as a significantly less-expensive kit. This made it the better option for me since I was not making much money working in a group home with emotionally disturbed teenagers. My friends and family were astonished: “Wait — you’re going to build it yourself? Do you even know how to do that?” I had neither workshop nor tools. I had never made a single item out of wood (or anything else). Nevertheless, I refused to entertain any doubts — I didn’t have enough time for doubts given that I had to show up at the school with a harp in September. There wasn’t a minute to lose. One night, I came home to find a cardboard box propped up against the front door. I knew it was my harp kit but could not believe how small the box was. It stood about five feet tall and was flat and plain. Somehow, I had expected it to weigh 300 pounds and glow from within. But it was just a simple cardboard box. I picked it up along with the mail and carried it inside. The kit contained wooden pieces, nylon strings, tiny plastic beads, and tuning levers. The instructions estimated it would take me about 40 hours to build and included a list of tools, most of which I could not identify. I began by attaching the base backward, so the foundation of the harp

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leaned the wrong way. (I suspect this is why the sides attached with screws and not glue or nails.) I reversed my steps and reattached the base to the sides, and everything fit perfectly. After that, I read the instructions much more carefully. It so happened that, in the middle of this project, I was introduced to a furniture maker. Eager for advice, I told him I was building a harp but feared I would ruin it with my inexperience. He kindly invited me to finish the project in his wood shop. When I brought it in, he generously praised the work I had done so far, encouraged me to keep following the directions, allowed me to share his space, and answered all my questions as he carried on with his own work. Once the structure was complete, I attached all 31 strings and tuning levers and set out to tune the harp for the first time, matching the pitch to a cassette included in the kit. I tuned and retuned the nylon strings over several days until they finally held their pitch. On the first day of school, I carried my harp out the front door, stopping short on the porch. I stared at the car. Just how was I going to get this large, fragile instrument into my car to take it to school? I had used a friend’s station wagon to get it back and forth to the furniture maker’s shop and had not stopped to think about how I would get a four-and-a-half-foot-tall, 25-pound harp, for which I had no case, into the backseat of my Volvo sedan. I briefly considered — and rejected — the idea of tying it to the roof. A sweaty half hour later, I drove across town with the trunk open, the top of the harp wedged inside, and the base blowing free in the fall humidity. Once at St. Patrick Hospital, I carried it awkwardly to the classroom, where I saw that my harp fit in with the others, for the most part indistinguishable as homemade. Indeed, building it would prove an apt metaphor for many moments of my career in music-thanatology, when I would be called to create something beautiful and helpful without always knowing exactly how to do it, or how the music would fit in with people I was meeting for the first time. THE SCHOOL OF MUSIC-THANATOLOGY My classmates came from many different backgrounds. They had stories of long careers, education, and spiritual experiences that led them to music-thanatology. On the first day, we moved around the circle making introductions through the course of a leisurely afternoon. I felt increasingly self-conscious — my only accomplishment was graduating from college. The curriculum was rigorous, as was the schedule. It included full-time coursework two days each week and weekly private harp and voice lessons. All students sang in the Chalice Schola Cantorum, played in a small harp ensemble, and prepared for public performances. There were the usual rigors of homework, reading, and exams, and a process of discernment in anticipation of the second year’s clinical internship.

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The curriculum was complex blend of disciplines. In addition to musical training, it included history, anatomy and physiology, medical lectures, inner development, spiritual psychology, epistemology, and anthropology. Among the faculty were resident and visiting professors, visiting lecturers, resident instructors and resident music-thanatologists. Woven throughout the curriculum was a call to inner transformation, with questions of meaning and spirituality present throughout each lecture. It was imperative that we prepare our inner lives to meet the dying with music, but the ways we did so were not prescribed by the school, and the curriculum taught no particular religious practices. The Chalice of Repose Project provided music-thanatology at St. Patrick Hospital and at other institutions around Missoula. Clinical internships, which involved providing music vigils to patients with a resident musicthanatologist and other classmates, began in the second year. Students entering their clinical internship year had to demonstrate proficiency in individual pieces of music by sitting for a clinical music review. We were then placed in an on-call rotation. When we arrived at the vigil, we determined the number of harps we would bring into the room and where we would all sit. We decided who would greet the patient and who would collect the clinical data at the start and the end of the music vigil. Eventually, student interns took turns leading the prescriptive process of assessing the patient and making decisions about the delivery of music. My first music vigil took place at a nursing home. We sat alone with the patient, an elderly man. I did my best to respond to the resident musicthanatologist as she chose the music and gently directed us to play, sing, and offer silence. Then, it was over. The man remained comfortable and unresponsive throughout, just as he had been when we started. I did not observe many changes at all during the music vigil. I drove home confused and disappointed. It had been two years since I first read about music-thanatology. I had completed one year of training, immersed myself in the language of the new field, and prepared myself to do the work at the bedside. I didn’t understand why the first vigil was not more profound. This feeling did not last. As I completed the 60 required vigils, I saw a wide variety of patient responses, and I began to see how unique each patient was and how important it was not to expect the patient to do anything or to respond in any particular way. The music vigil was often an exercise in mystery. I didn’t always know for certain what I was doing, and I brought little life experience to the music vigil. My teachers praised my academic work but gently encouraged me to move beyond it, in order to deepen my relationship to the music and my ability to witness the dying process. At first, I understood death as an abstract concept, rather than something I could relate to on an emotional or spiritual level. I knew the patients I saw were dying, but I felt more like an observer than an engaged witness. It wasn’t

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until my own heart had been broken a few times over the following years that I began to soften and relate to the patients and families — not just to their grief and sadness, but also to the complexities of love, acceptance, forgiveness, and communication. When I began to understand how close death was to the patients and families I was seeing, it slowly, over many years, occurred to me that death was equally close to me. The literal images of this vulnerability in the vigil have deeply affected me. I still have moments where being alive at all seems both miraculous and tenuous, when I can hardly believe the good fortune of being able to ride a bike down the street, speak with the people I love, or enjoy a beautiful day in the sun. The two academic years passed quickly, and when they were over my classmates and I participated in a pinning ceremony, a public gesture of our intent to continue in our formation as music-thanatologists. We then had to prepare for certification requirements, which included not only the completion of the didactic component and the clinical internship, but also a professional paper and comprehensive exams. It took me an additional year to complete these steps and to become certified. It was then time to determine what would come next. MY FIRST JOB AS A MUSIC-THANATOLOGIST Finishing the training and certification had been more of a spiritual journey than a career move. I knew that my education had been profound and that being in the presence of the dying had changed my life in ways I could not yet predict. But my vision for a career in music-thanatology ran into the reality of limited opportunities for employment. Although I worked briefly as a parttime music-thanatologist for the Chalice of Repose Project, I was considering whether to stay in Montana. I decided to do what I always did in times of transition: I applied to school, in this case, to master’s programs in writing. As I was finishing my applications, I was invited to a wedding in Boston. At the reception, I sat next to a couple in their final year at Harvard Divinity School. Not only had I never heard of the place, but I had never heard of divinity school at all. I decided to learn more about it and, in doing so, discovered a new way to understand service — as ministry. By the time I entered Harvard Divinity School that next fall, I was convinced that I had come to the end of my life as a music-thanatologist. For the next three years, I rarely played the harp or spoke about my work with the dying. I did not feel called to ordination or to other vocations in which I might have carried over some of my skills. My time in Montana began to seem like a postcollege adventure. And yet, I continued to explore topics related to healing and creativity. I worked as a research assistant for the Religion, Health, and Healing Initiative

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at the Center for the Study of World Religions. This involved traveling to Episcopal churches in the area to attend healing services and interview practitioners. I was a chaplain intern one summer, where I learned to offer pastoral care, prayer, and a listening ear to patients in treatment for cancer. Another summer, I returned to Missoula to intern at the Missoula Demonstration Project, an organization with a community-based approach to researching and improving end-of-life care. As I neared graduation, I began to consider what I might do professionally. But as I tried to organize my resume and job-hunting plan, I experienced a strong intuitive certainty — an inner knowing that now is not the time. I literally could not keep my mind on the job search. When I forced myself to concentrate on the task, my only thought was: now is not the time. In April, I received an e-mail about a music-thanatology position at a hospice outside Chicago. As soon as I read the e-mail, I suspected that this was the opportunity I had been waiting for. I sent the hospice my resume, was hired a few weeks later and, by the end of the summer, had moved to Chicago. WORKING AS A MUSIC-THANATOLOGIST Seasons Hospice and Palliative Care is a large hospice with a strong commitment to music, and when I was hired, they already provided music therapy. As the only music-thanatologist on staff, I could receive referrals from anyone at the hospice. In practice, this meant that I traveled over an enormous region, sometimes driving more than a hundred miles in a day to get from one patient home or hospital room to another. My knowledge of and respect for the hospice model of end-of-life care grew tremendously. The nurses, chaplains, social workers, nurse’s aides, volunteers, and physicians I met were deeply committed to patient care and comfort, and they were strong advocates for patients and families. Besides offering music vigils, my day included team meetings, offering education about music-thanatology, and charting. As I met patients and families from different cultures, religions, and backgrounds, I quickly learned the importance of flexibility. At times, I found myself in music vigils with patients who did not speak English, with no one nearby to translate. If they spoke Spanish, I could haltingly introduce myself, but I was not able to offer extended, subtle explanations of the harp or its purpose. If they spoke neither English nor Spanish, I did the best I could with body language and music. In other situations, patients’ and families’ religious identities were the strongest force in the vigil. Sometimes the music played a secondary role to long prayers and spontaneous bedside rituals. I was once invited to a patient’s

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home on the recommendation of a chaplain with a long relationship with the family. The hospital bed sat in the center of the living room, with family members filling the room. The patient’s wife stood next to the bed. As I began to play, she offered an extended healing prayer for her husband. The music accompanied her increasingly impassioned prayers. I continued to play, and soon her husband became more alert. When the prayers and music were over, the wife invited the chaplain and me to stay for dinner. While I would not normally have stayed for a meal, out of respect for the patient’s and family’s privacy, it was clear we were being invited into an intimate family space, and we both accepted her hospitality. I had been trained to turn off phones, close doors, and ask medical staff to suspend nonurgent patient care during music vigils. While this remained an ideal, I could not always carry it out when working in multiple settings, with patients and families from a wide range of circumstances. I began a steep learning curve as I tried to communicate the possibilities of the music vigil, while also trying to respect individual needs, hopes, and boundaries. I learned to set aside how I imagined a music vigil should look and instead to accept what unfolded in the moment. For example, during one patient visit, a family member asked if she could play my harp—a question I had never been asked in a vigil. Intrigued by her interest and the opportunity to share the instrument, I was happy to say yes. I invited her to sit on my stool and to tip the harp back onto one of her shoulders, keeping a firm grip on it with one hand before plucking the strings with the other. I told her that the stings were not fragile and that she couldn’t hurt the harp, so she should just go ahead and make some sounds on it. Other family members watched. Then they lined up to sit down and try the harp themselves. It was not a moment of deep silence or reverent attention, but it was what this family wanted to offer their loved one, the way they wanted to experience the music together. Although it might seem that I must see a patient’s death almost every time I do a music vigil, prior to working for Seasons Hospice, I had never witnessed the moment of death. I had been working there for a few months before I was present for a death. It was remarkably simple. I was alone with a woman in a nursing home, gently singing to her. My hand rested on her hand, providing a light touch, while I sang in rhythm with her breaths. She had been completely unresponsive for close to a half hour, breathing softly and more and more slowly. I decided to move to the harp and slowly pulled my hand away. She reacted with a slight, small movement of her head. I immediately put my hand back over hers and began to sing again. Her breathing became slower and slower over the next several minutes. And then she just died, like the wind through tall grass. I waited for the next breath. It didn’t come. I waited. The silence expanded, as I realized there were no more breaths. We sat together in

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that silence until someone came in to care for her, and I had to break the spaciousness by speaking. MUSIC-THANATOLOGY AS MINISTRY I eventually returned to the East Coast and today am a part-time musicthanatologist for the Palliative Care Service at the Lahey Clinic Medical Center in Burlington, Massachusetts. Although I am only in the hospital one evening a week, the staff members I meet in various units have welcomed the music. Occasionally, a member of the nursing staff will discuss their clinical goals with me before a music vigil. For example, one evening, as I wheeled my harp onto an intensive care floor, a nurse came over to direct me to a particular patient. “He’s very fragile,” she said, “It would be great if you could play for him. You could even play outside the room. I want you to help him relax, but please don’t lower his blood pressure at all, okay?” Her confidence in the way that music could affect multiple systems of the body revealed a nuanced understanding of the possibilities of music for clinical care. She addressed me as a colleague, even though utilizing music to stabilize blood pressure and offer relaxation was likely not a regular protocol. During another evening visit, a nurse told me that her patient’s heart rate had been unusually high all day. “We’re hoping that the music will help bring it down,” she said. Once inside, I met an elderly man who was barely alert. He did not greet me verbally as I introduced myself but opened his eyes slightly. About halfway through my visit, his nurse returned to the room and thanked me. “As soon as you began to play,” she said, “his heart rate decreased by half.” Staff regularly remark that fewer patient alarms go off when there is harp music on the floor. They also comment on the benefits of music for lowering their patients’ blood pressure — and for themselves. After 10 years as a music-thanatologist, the music vigil provides regular opportunities for growth in my clinical knowledge. I don’t always know how to explain the effects of the music, but I believe patients and families when they tell me the music is beautiful and meaningful. Understanding myself not as a performer but as a contemplative musician guides me when I am in danger of giving in to fatigue, playing in a routine way, or showing off. It reminds me that a music vigil is not a place for perfect playing and perfect singing. Instead, it is a sacred space where music, presence, and compassionate attention accompany a dying patient as he or she prepares to leave this world. A few years ago, I heard a lecture about ministry. In that moment, something finally clicked. I understood that my previous discomfort with the label musician came from my ambivalence about performance, not about music. When I understand myself to be a minister, contemplative music becomes a vehicle of my ministry, and the work of music-thanatology becomes my vocation. The spiritual practice of that vocation is the music vigil. As a spiritual

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practice, it is not something I will likely ever finish or perfect, but instead something I will practice. The spiritual practice is in balance with clinical knowledge; it requires me to apply an intellectual rigor to what I observe, in order to asses what is true and to be able to communicate it to others. This is not always easy or comfortable, just as practicing piano or memorizing the bones of the body is not easy or comfortable. Like anyone with a spiritual practice, I commit to going to the bedside again, regardless of my mood or my questions. Neither doubt nor certainty matter in a spiritual practice; it is only the doing that matters. As I cross the threshold to see a dying patient, I set my intention again. I put my hands on the strings, not because I know what will happen, but because I am called to make this small offering, with my homemade harp, and my own voice, and as much love and compassion as I can offer. People often ask how I can be a music-thanatologist. My answer is that the other side of grief is love — a deeply human, beautiful, striking, everyday love. The privilege of being present with dying patients has offered me insight into mystery — the mystery of loving family and friends, the brevity of life, and the courage ordinary people demonstrate every day. It is true that I witness a tremendous amount of grief at the bedside. But I also witness the love people have for one another and their tender struggle to express it in words, gestures, stories, or simply a look. It is pure grace to be invited into the presence of this love — a man stroking his brother’s forehead, a granddaughter whispering stories to her grandmother, an elderly man gazing at his wife of 50 years, friends gathered around a bed, holding hands.

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CHAPTER 2

Z A Confluence of Ideas: Historical Influences on Music-Thanatology

Where did it all start? Music-thanatology, a professional field in which musicians play live harp and vocal music for dying patients, is both an art and a science, weaving together medicine, music, and spirituality. At first, the idea of music-thanatology might seem an unusual or unexpected development in the history of a technologically rich medical culture in the United States. However, in examining the historical context out of which it was born, one can see more clearly how this new field offered a creative solution to the challenges that patients face at the end of life, along with the staff and family members who care for them. Therese Schroeder-Sheker founded music-thanatology in the early 1970s and, by 1980 had created the Chalice of Repose Project as an umbrella for the multiple tasks related to developing the field. She writes that these included “publishing the medieval material, teaching the musical repertoire, and taking the music out into the hospices” along with lectures and other public presentations.1 Several other significant innovations also occurred in that same era. First, during the 1970s, the hospice movement’s emphasis on pain management and a conscious preparation for death began to transform end-of-life care in the United States. Second, music therapy, which had served many different populations of patients since the 1940s, began to formalize its role within palliative care. Another important historical influence would prove to be the medieval customary — a text that records the living customs of a monastery. In 1980 historian Frederick S. Paxton translated the customaries of an 11th-century monastery in Cluny, France, into English for the first time. Schroeder-Sheker has called monastic medicine the “historical, scholarly, and spiritual inspiration” for music-thanatology.2 The availability of Paxton’s translation of the death rituals at Cluny provided her with a text that became “central to the development of the vision of the Chalice of Repose Project and the field of music-thanatology.”3

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This chapter will explore how the interweaving of hospice philosophy, the development of music therapy, and the historical grounding provided by Paxton’s translation helped lay the foundation for a new field that focused exclusively on music and end-of-life care. These historical threads illuminate how music-thanatology — even though its practice in biomedical settings may at first seem counterintuitive — in fact emerged in the United States just as biomedicine itself was beginning to identify complex needs, particularly the need to care for the whole person and the need for beauty and meaning at the end of life. MUSIC AND RITUAL Music has been associated with medicine for millennia. Martin West suggests that it goes back to Paleolithic times. In the primitive world view that West describes, those who suffered from illness consulted an expert who could communicate with the spirits. These experts often used musical instruments to complete their magical work, specifically the drum, bow, flute, and horn. He also notes precursors to the harp: “The hunter’s bow, when one end of it was put in the mouth to provide a resonator, became a musical bow, which made a twanging sound; it was from this that the harp eventually developed.”4 Such instruments were all made out of animals that were dead; their use invoked images of the dead speaking through their former bodies. According to West, “By means of music the expert may conjure and control spirits, make them speak their secrets, compel them to do his will.”5 He argues that this may be a source for the belief that music can be used for healing, through the invocation of spirit help. In ancient Greece, healing work focused on appeasing the god who had caused the illness or suffering. Pythagoras, a figure from the sixth century b.c., is associated with the early use of music for healing. It is difficult to assess the actual discoveries that he made, though his followers attribute a great deal to him. Either way, he — or perhaps his followers — discovered the numerical ratio of basic musical concords, such as the fifth and the octave, which they used to explore ideas about the relationship between music and the soul. Athenian intellectual Damon wrote about the effects of music on the emotions. He believed that different raw materials of music, such as its modes or rhythm, had different ethical qualities. Because of this, he advocated for a system of educating young people that would emphasize music’s most useful qualities. Plato was influenced by Damon and thought that certain music could influence the souls of young people. Believing that it encoded particular qualities of humanity, Plato understood that educators must pay careful attention to the kinds of music youth heard.6 Boetheius, a sixth-century philosopher and theologian, wrote the most influential work on music, De Institutione Musica. Its importance resonated

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throughout the Middle Ages and Renaissance. He believed it was a force that held together the four elements, its harmony providing a balancing effect for the parts of the body and soul. James Garber writes, “This view is consistent with the theoretical basis of medieval medicine, that is, the balance and imbalance of the elements, qualities and humors account for health and disease.”7 In this context, music could offer healing or disturb the fragile balance. While the ancients used music to explain the very nature of the universe, as well as the route toward and away from health, music has also been closely associated with ritual activity. Ritual is not something necessarily distinct from modern life; we witness ritual at weddings, funerals, birthday celebrations, and graduations. Participants in rituals go from one state to another: student to graduate, single to married, or child to adult. Music often accompanies this transition. Anthropologist Arnold van Gennep examined ceremonies of transformation from beginning to end and then classified these ceremonial patterns in relationship to one another. He divides what he calls rites of passage into three categories: rites of separation, such as funerals; transition rites, such as pregnancy; and rites of incorporation, such as marriage.8 Frederick Paxton, in turn, applied van Gennep’s threefold ritual structure to the deathbed rituals of Cluny.9 Anthropologist Victor Turner built on van Gennep’s work by further defining three stages of each type of ritual. The first stage is separation, either from a previous social role, from a state of being, or both. The second stage is the liminal stage, from the Latin limen, meaning “threshold.” In this stage, the person’s role is ambiguous. He or she has departed from their previous role or state but is not yet fully transformed. In the third phase of the ritual, called reaggregation or reincorporation, the passage has been made, and the participant has been brought into his or her new state. Turner makes special note of the liminal phase of the ritual, calling the participants liminal personae, or “threshold people.” They exist in a space in which normal classifications no longer exist. According to Turner, “Liminal entities are neither here nor there; they are betwixt and between the positions assigned and arrayed by law, custom, convention, and ceremonial.”10 Turner’s theory on the stages of ritual has been extremely helpful to the field of music-thanatology as it describes its work with dying patients. Citing Turner’s work, music-thanatologists often image the dying patient as one of the liminal personae, no longer fully engaged in his or her previous role, but not yet reincorporated into the new identity. Dying is a threshold. The music vigil is a place that welcomes the ambiguity of the liminal and accompanies and supports the dying patient as he or she makes the transition out of life and into death. One of the qualities of music that lends itself to ritual activity is that it does not necessarily have to be attached to its source in order to be perceived. In Theology, Music and Time, Jeremy Begbie points out that unlike

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visual art, which must be seen with the eye to be perceived, sound can be separated from its source and still be heard. He writes, “This opens up a space which is not that of discrete location, but, for want of a better word, the space of ‘omni-presence.’ ”11 In my interviews with music-thanatologists and their medical and psychosocial colleagues, a quality of sacred space was often mentioned and will be discussed in later chapters. At the same time, Begbie argues against the suggestion that music by its very nature lifts the hearer out of everyday life and into a quality of timelessness: “Much well-meaning talk about music’s supposed ‘spirituality’ and its theological significance has been built on the questionable notion that music affords an entirely different kind of temporality to that which pervades our day-to-day, non-musical experience of the physical world.”12 In “Music, Trancing and the Absence of Pain,” Judith Becker discusses the Rangda / Barong ritual of Bali, Indonesia, and provides an example of the ways in which music functions in ritual. The ritual involves the witch Rangda and the beast Barong and serves to restore balance to the village when a misfortune has come upon it. Gamelan music and drumming accompany the ritual, during which a group of young men goes into a trance. The trancing men do not experience pain or fatigue, a phenomenon that Becker attributes to the sacred and emotional nature of the ritual, accompanied by the music. According to Becker, “Music enhances the sense of a different imaginary world, provides a rhythmic template for the trancing body, increases emotional excitement, and facilitates the experience of a different self.”13 Respondents to Becker’s article discuss a number of the qualities of music as they pertain to ritual. Kay Kaufman Shelemay, for example, draws on the example of two types of musicians who use music to relieve pain. The first are church musicians from the Ethiopian highlands, called dabtaras. In representations of dabtaras, church icons show images of musicians protected from pain, but these musicians do not discuss their role as healers. Shelemay found other forms of musical healing in the United States among Jews of Syrian descent, who utilize music in ritual to alleviate pain by singing particular songs or including a participant’s name in a song in order to promote healing.14 Howard Fields, in his discussion of how ritual and music can change the experience of pain, notes that music makes ritual much more powerful. Ritual, he suggests, has the potential to change people’s expectations, which are made up of what they would like to have happen (hope) and their sense of the likelihood that they will receive it (faith). Fields claims that music and ritual do not impact hope as much as faith: “Here’s my proposal: music has a special way of mitigating doubt or improving faith because it’s nonpropositional. Since it’s nonpropositional, it can’t be false. Even if it is harshly dissonant, you can’t falsify music. It’s there, so it is in some way shielded from doubt. Doubt is always linguistic in its expression. Music can be bad, but it can’t be untrue.”15 Fields’s proposal has remarkable implications for

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a field that relies on music to provide end-of-life care. Even if a visit from a music-thanatologist does not affect the patient’s hope for a cure, it can affect his or her expectation regarding pain and therefore help to mitigate it. Music that creates a space for patients and families to occupy can offer an experience that is different from everyday life — one in which this new experience can offer new possibilities. THE RISE OF MUSIC THERAPY AND END-OF-LIFE CARE IN THE UNITED STATES Music-thanatology has long been associated, and occasionally confused with, the field of music therapy. However, music therapy precedes musicthanatology by more than 30 years. Music therapy arose in the United States in the 1940s, although its origins are much earlier. Canon Frederick Kill Harford created the Guild of St. Cecilia, a group that explored musical healing in Britain. In the late 19th century, he carried out and published a series of experiments on the healing properties of music. In “The Music Therapy Profession in Modern Britain,” Helen Tyler concludes that ideas similar to the main precepts of Harford’s work form the basis for the development of contemporary music therapy, including the importance of training and the ability of music to successfully treat patients alongside medicine. Tyler also traces the history of the development of music therapy in the United States. In 1919 a course in musicotherapy was taught at Columbia University. The National Association for Music in Hospitals was formed in 1926. In 1944 the first academic curriculum in music therapy was designed at Michigan State University. Finally, the National Association of Music Therapy formed in 1950.16 Jane Edwards’s study of music in health care contexts from the 1890s to the 1940s reveals that one of the primary influences in the development of the field was the return of injured soldiers following the Second World War.17 At that time, growing attention was placed on education and licensing for music therapists, along with efforts to utilize a scientific approach to research and evaluate the effects of music therapy. A pilot program of music therapy in the palliative care service at Montreal’s Royal Victoria Hospital got underway in 1977, using a variety of instruments as well as recorded music. Music therapists used several techniques with palliative care patients, including the exploration of feelings through discussions, creating art, and other activities to go along with music. Primary reasons for referral included anxiety, withdrawal, difficulty with language, and pain, and music therapy was used to meet patients’ physical, psychological, social, and spiritual needs. It was defined in the following way: Music therapy is the controlled use of music, its elements and their influences on the human being to aid in the physiologic, psychologic and emotional integration of the individual during the treatment of an illness or disability.18

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Patients and families found that the music “is often able to comfort when words are inadequate or inappropriate,”19 although researchers Munro and Mount stressed the importance of assessing the patient and using music judiciously, given patients’ vulnerability: “Man has little defense against the influence of music. Its impact often has far-reaching emotional and psychologic effects that need to be observed and channelled appropriately.”20 Practitioners had to pay careful attention to music’s various elements, such as volume, or the choice of whether to use live or recorded music. These concerns echo the ancient understanding of the power of music both to heal and to harm. Music therapy has continued to grow in hospice and palliative care through the present day. In 2004, a conference called “Music Therapy at the End of Life Symposium” led to the publication of Music Therapy at the End of Life (2005), in which the different authors discussed related approaches. Cheryl Dileo and Dawn Dneaster, for example, suggest four categories of music therapy at the end of life, which they call receptive, creative, recreative, and combined. Receptive approaches include experiences for the patient in which music is listened to passively. This may include song dedications, musical life review, and lyric analysis. Creative approaches involve the creation or composition of music. Improvisation and songwriting are creative approaches. Recreative approaches include conducting or performing pre-composed songs. Combined approaches use music therapy along with a different modality, such as massage or meditation. When working in end-of-life care, music therapy goals can be supportive, communicative/expressive, or transformative. The music therapist uses their assessment to determine the needs of the patient and the level at which music therapy will function. At the supportive level, music therapy can be used to manage a variety of symptoms and to provide comfort or pleasure to the patient. Communicative/expressive music therapy allows the patient to process or express emotions, feelings, needs, or wishes. The transformative level of practice allows for growth at the end of life, including conflict resolution or finding hope or meaning within the dying process.21 On its Web site, the American Music Therapy Association defines music therapy as “the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.” Related educational programs have been offered since 1944. Music therapists are certified by the Certification Board for Music Therapists, which is accredited by the National Commission for Certifying Agencies. As they prepare for certification, music therapists must complete undergraduate training in music therapy or its equivalent, pass an exam, and complete an internship in music therapy.22 They serve patients of all ages, in a wide variety of settings, including schools, hospitals, and nursing homes. Since 1994, music therapy has been reimbursable through Medicare; Medicaid

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reimbursement varies state by state, and some private health insurance also provides reimbursement. In his book Hospice and Palliative Care Music Therapy: A Guide to Program Development and Clinical Care, Russell Hilliard says that music therapists are trained and prepared to provide music-based services to patients and families throughout their cycle of illness. They can also provide bereavement support for families after the patient’s death, and “coordinate the music provided by non-music therapists such as volunteers, chaplains, nurses, or social workers.”23 He advocates for a music therapy practice that coordinates the various types of music visits a patient might receive, so that the music therapist may utilize his or her assessment skills to continually evaluate the efficacy of music therapy, volunteer music, recorded music, and other supportive music services. Hilliard notes that music therapists who work in end-of-life care will meet other professionals offering music services, including music-thanatologists.24 Starting around the 1970s, several other programs developed that invite music into medical settings. These programs vary in training, focus, and setting, but they each offer bedside music, often with the harp. In her article “Just What the Doctor Ordered,” Leah Delight Schade compares five harp therapy programs. She argues that in the 20 years before 1998, when the article was published, “our culture has begun to incorporate music and the harp into its more traditional medical arts and modern clinical settings.”25 She focused on programs such as the Music for Healing and Transition Program, the International Harp Therapy Programme, Healing Harps, and ACCHORD Music Access Project, in addition to the Chalice of Repose Project. She notes that many of the founders of these groups had moving personal experiences that drew them to develop training programs for others to work at the bedside with a harp. They emphasized the importance of training and shared ethics. It is clear, then, that by the time music-thanatology was developed in the 1970s, music therapy and other therapeutic music programs had laid the groundwork for a conversation about the benefits of music in biomedical settings. Music-thanatology’s particular niche within end-of-life care will be explored in chapter 3. The hospice movement of the 1970s provided the second stream of influence for this development. THE RISE OF THE HOSPICE MOVEMENT IN THE UNITED STATES Music-thanatology emerged at a moment not only when music therapy was entering the field of palliative care, but also when the hospice movement began to influence end-of-life care in the United States. The Latin root of the word hospice can be translated into both “guest” and “host,” as well as “stranger” and “friend.” Although hospice is often believed to be a special home or hospital where individuals go for the final weeks or months of their terminal illness,

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it is actually a concept of holistic care offered wherever the patient lives: their home, nursing home, or hospital room. Hospice services include regular visits from a hospice nurse, who manages the overall care of the patient along with a hospice physician. A certified nurse’s assistant is available to provide physical care of the patient, such as bathing. A social worker and chaplain offer a range of psychosocial and spiritual care support for the patient and family. In addition, hospice volunteers may visit with patients and families. According to the Web site of the National Hospice and Palliative Care Organization, hospice care in the United States is paid for by Medicare, Medicaid, and medical insurance companies. This funding includes paying for medication related to the hospice diagnosis as well as medical equipment such as a hospital bed or oxygen tank, when required. Hospice care is available to patients who are expected to live no more than six months and who have decided to forgo curative treatment for their disease process. However, endof-life care can be unpredictable. Patients may remain on hospice for longer than six months if the hospice team assesses that they continue to be eligible for services. The roots of today’s hospice services lay in religious traditions that are thousands of years old. The Council of Nicea met in a.d. 325 and decided that every city with a cathedral should also have a hospice. Both Christians and Muslims saw the care of the sick as a religious imperative.26 As early as a.d. 361, Roman Emperor Julian the Apostate grew concerned about the care the Christians provided to the sick and the poor, fearing that this compassion would lead to vast conversions and political power. He instructed the Romans to begin to imitate them.27 During the Crusades, hospices became popular throughout Europe and served both travelers and crusaders. Knights and Christian religious orders worked together to not only build hospices but also serve people in the hospices. Attendants took a vow of poverty, and knights who mistreated those whom they served were punished severely.28 Joy Buck traces the history of hospice in her article, “Reweaving a Tapestry of Care: Religion, Nursing, and the Meaning of Hospice, 1945–1978.” Hospices of the late 19th century heavily emphasized the spiritual care of the dying. At Our Lady’s Hospice in Dublin, the budget reflects the priority of spiritual care. According to Buck, “The amount spent on the chapel and chaplains was almost identical to that spent on medical attendance and pharmacy and is indicative of the limited pharmacopoeia and the high value early hospices placed on spiritual care for the dying.”29 In these early homes for the dying, Buck notes that care was directed to three “distinct yet interrelated entities: mind, body, and soul.”30 A caring presence and individual attention to the patient was emphasized. The hospice movement in the United States can trace its roots directly to Dame Cicely Saunders in Britain. Saunders, who over the course of her career trained as a nurse, a social worker, and a physician, developed her passion for

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end-of-life care while working at a hospice called St. Luke’s Home. She was deeply affected by a relationship with a patient named David Tasma, and when he died, he left her money in his will for her future hospice, which she would open 19 years later as St. Christopher’s Hospice.31 Saunders’s approach to care for the dying was an integrated vision with an emphasis on spiritual care. She used a multidisciplinary approach, focusing on the relief of total pain. This meant responding to pain that was not only physical, but also “emotional, social and spiritual.”32 Cicely’s scheduled dosage of drugs is considered one of her most important contributions to the field of medicine. She developed a protocol so that patients regularly received dosages of pain medication, rather than enduring pain and then having to ask for medication. In 1967 she set up St. Christopher’s Hospice. Her vision was informed both by her education as a physician and by her Catholic faith; she wanted the hospice to be both medical and religious, though she did not want to impose religion on any patient.33 She utilized a cocktail of medication she had first learned about at St. Luke’s, which allowed the patient’s pain to be managed without being sedated. The success of Saunders’s hospice led to collaboration with those in the United States who were interested in care for the dying. The early hospices in the United States began in the 1960s. Saunders traveled to the United States giving lectures about the success she had had in pain management and care for the dying. In her book The Hospice Movement: Easing Death’s Pains, Cathy Siebold argues that the British hospice care system was not entirely consistent with the medical culture in the United States. For example, American physicians were not typically involved in the spiritual and emotional side of patient care. The American medical culture emphasized technology and placed volunteers in a lower status than paid staff. In addition, the British health care system had a much more open engagement with religion and spirituality.34 Even with these differences in culture, Saunders’s influence took hold in the United States, particularly thanks to psychiatrist Elisabeth Kübler-Ross. Kübler-Ross developed a theory of stages that terminally ill patients pass through after receiving their diagnosis. She advocated for open conversation with dying patients and an acceptance of death in the culture. In 1966 these two prominent figures were invited to lecture at Yale University Hospital. After meeting Saunders and becoming familiar with her work, Kübler-Ross became a leader in the hospice movement. Siebold argues that without Kübler-Ross, the hospice movement might not have succeeded in the United States. According to Siebold, Kübler-Ross “made the public sit up and take notice of death and dying.”35 When she traveled and lectured, she inspired local groups to form for further discussion about death and dying. As hospice care has grown in the United States, concerns for how to pay for it have also grown. The hospice benefit for Medicare was created in 1982. A recent article in the New England Journal of Medicine notes that between 2000

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and 2007, the number of Medicare-participating hospices in the United States grew significantly, from 2,300 to 3,200. The Medicare Payment Advisory Commission (MedPAC) advises Congress and recently reported that in addition to increasing demand and the introduction of for-profit hospices, there may be incentives in the hospice benefit pay structure that account for this increase. Specifically, the benefit pays a variable daily rate that depends on the patient’s level of care. Medicare reimburses hospice for each patient, regardless of whether they are seen by hospice staff. MedPAC recommends adjusting this payment system so that the benefit pays more at the start of the patient’s length of stay, when resource needs are likely to be higher.36 On the other hand, professor of medical ethics Robert Veatch argues against paying for hospice as a medical treatment. Because of the wide range of support that hospice provides, he does not believe hospice should be medicalized. Veatch believes that at the end of life, the nonmedical component of care is often more important than the medical. As a result, he argues that hospice should not be funded through health insurance or Medicare. Instead, hospice should be an independent program, universally available and probably attached to Social Security. This would remove the need to rely on a medical model for end-of-life care.37 Palliative care is associated with hospice but offers some distinctive features of care for the dying. From the Latin pallium, the word means “cloak” or “mantle.” The term was first officially used in Britain in 1987, when palliative care was recognized as a medical specialty. In 1989, the European Association for Palliative Care defined it as “active total care when disease is not responsive to curative treatment; it neither hastens nor postpones death; it provides relief from pain and other distressing symptoms; it integrates the psychological and spiritual aspects of care and helps the family cope during the patient’s illness and in bereavement.”38 This care focuses on pain and symptom management and integrates spiritual and psychological needs, including bereavement care for the patient’s family after death. The World Health Organization defined palliative care in 1990, emphasizing quality of life of the patient and the possibility of expanding the role of palliative care beyond end-of-life care by initiating it earlier in the disease process. Although palliative care evolved out of hospice, it has several distinctive features, primarily focused on its involvement at all stages of disease process and utilization of tertiary interventions when appropriate.39 Hospice and palliative medicine (HPM) was formally recognized as a medical subspecialty in 2006. GROUNDING A NEW CLINICAL FIELD IN MONASTIC RELIGIOUS PRACTICE Today, music-thanatology has become a component of end-of-life care in hospitals, hospices, and nursing care settings across the United States.

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Practitioners pioneering in other countries have not always encountered the same level of acceptance. Hilly Bol is a music-thanatologist from the Netherlands. A former radiologist, she learned about music-thanatology while attending a conference called “The Hospital as a Temple” in October 1997; she enrolled in the School of Music-Thanatology at the Chalice of Repose Project less than a year later.40 After completing her training in the United States, Bol has found that making inroads in her own country has been challenging. In spite of her outreach to other fields, such as music therapy, she has discovered a lack of experience with musicians in Dutch medical institutions. “When I talk to people in the Netherlands about harps in hospitals here, whether music-thanatologists or music therapists or other harp programs, they just don’t understand. They have no idea about that,” says Bol. As the only music-thanatologist in her country, she must continually educate her medical colleagues about offering live music for end-of-life care. As an undergraduate, music-thanatology founder Therese SchroederSheker worked at a geriatric home. She grew troubled by the callous way in which patients were treated and by the lack of meaningful or careful attention paid when a patient died. She shared her concerns with a priest friend, wondering whether she should leave the position. The priest believed that the situation was a “spiritual opportunity.”41 He encouraged her to remain in her work while expanding her spirituality to include the scriptures of the world’s religions, to be “open to the endless religious and spiritual differences and needs in human beings.”42 As she contemplated this conversation, she had an experience with a man who was dying of emphysema. He was combative and difficult to care for. One evening, when Schroeder-Sheker entered his room, she heard his loud death rattle. Although she was frightened, she went to his bedside: “Without any theory, but perhaps because of the way my priest friend had fortified me, I responded to his dying as one human being to another.”43 She reached for his hand, and he surprised her by holding on to it. Not knowing exactly how to respond, she decided to remain with him. Her posture reflected the “imagination of a supported birthing” which her friends had experienced in Lamaze classes.44 She “got into bed with him, midwifery style, Lamaze in reverse, and sang to him until he died.”45 As she sang, the man became much more comfortable. Schroeder-Sheker recounts, “He rested in my arms and began to breathe much more regularly, and we, as a team, breathed together.”46 After he died, the other orderlies in the nursing home allowed her to remain with him. Schroeder-Sheker recalls the effects of this experience: “It was a completely life-changing experience. None of us spoke about it, but from that moment on when anybody was approaching death, we all dealt with it in a different way.”47 Schroeder-Sheker identifies this experience as “the first vigil.”48 She did not set out to begin a new professional field and notes that “the development

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of both music-thanatology and the Chalice of Repose Project happened naturally, organically.”49 While teaching in Denver, she developed the work of using the harp in the medical setting.50 The first 11 years were an “apprenticeship time of quiet observation, developing ideas, gaining clinical experience, and formulating questions, while simultaneously maintaining a teaching, concert, and recording career.”51 According to Schroeder-Sheker, by the mid-1980s, she had worked in “every hospital and hospice in Denver.”52 She began to take on students but knew that music-thanatology needed to find a way to work “right in the heart of medicine.”53 In the early years of her work, Schroeder-Sheker used the term musicalsacramental-midwifery. In the mid 1980s, she was introduced to the term thanatology, the study of death and dying, by the medievalist Valerie Lagorio. Schroeder-Sheker realized immediately the importance of this term for her work: “It was probably more acceptable than the first words I had been using, which unashamedly evoked religious and feminine sensibilities.”54 Initially, Schroeder-Sheker used both terms, choosing music-thanatology when she spoke medically or academically, and using musical-sacramental-midwifery when she spoke about pastoral theology. When the two terms were no longer helpful, she chose to use music-thanatology. It seems likely that this choice reflected Schroeder-Sheker’s commitment to creating a new medical modality. In an interview with Joshua Leeds, she explains her commitment to moving music-thanatology into a medical setting, rather than a college or university without medical facilities: “I think that by the late 80’s, I knew that there would be no hope for us unless we were in a hospital or in a medical setting. If we stayed in a purely liberal arts setting, we would remain just an idea.”55 In an interview with Kurt Rosenberg, Schroeder-Sheker said, “It’s very important to develop a broad, in-depth research model because we won’t be able to consciously know why the music works if we don’t.”56 Rosenburg then summarizes her larger vision for the work: “That, she says, will dissolve the boundaries separating the physician, musician and priest, uniting the work of all three into a ‘medicine of sound.’ ”57 This medicine of sound was integrated into a medical setting two years later when Schroeder-Sheker moved the Chalice of Repose Project and School of Music-Thanatology to St. Patrick Hospital in Missoula, Montana. At that time physicians “voted to welcome music-thanatology to Missoula as a medical modality. They wanted to offer this modality as a standard component of supportive end-of-life care”58 In tandem with her commitment to the medical integrity of the field, Schroeder-Sheker explored the relationship between music-thanatology and monastic medicine. Raised near a Carmelite monastery, Schroeder-Sheker “grew up hearing plainchant.”59 When she sang to the elderly man during the first music vigil, Schroeder-Sheker sang chant from the Christian monastic tradition, including “the Kyrie from the Mass of the Angels, the

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Adoro te devote, the Ubi caritas, the Salve Regina.”60 She would later embark on a personal course of study in monastic medicine, as well as internal and palliative medicine, while she maintained appointments at Regis University and then St. Thomas Seminary.61 In 1984, she met historian Frederick Paxton at the International Congress on Medieval Studies. Paxton presented a paper called “Liturgy and Anthropology: A Monastic Death Ritual of the Eleventh Century.” The morning after Paxton presented his paper, he met Schroeder-Sheker at breakfast. As they sat down to eat, she asked him to listen to a piece of music. Paxton recalled the experience of hearing the music: “Leaning over, she sang in my ear two alternating lines in Latin and Old Irish that echoed the deathbed chants at Cluny. It was hauntingly beautiful, and profoundly moving.”62 Paxton’s master’s research focused on monastic attitudes toward death in the late 11th century, and Schroeder-Sheker found his work to be essential as she developed the new field of music-thanatology: “Until being introduced to Paxton’s work and thought, I had not found a linguistic methodology or organizational model that could speak to the nuances of both clinical and pastoral practices, and music-thanatology needed both capabilities.”63 The translated deathbed rituals at Cluny provided the field of music-thanatology with a unique religious and historical grounding. Paxton would go on to join the faculty at the School of Music-Thanatology as a visiting professor from 1994 to 2002. It is easy to see the connection between the contemporary music vigil and the deathbed rituals at Cluny. In both spaces, a community of loved ones gathered around the bed of the dying patient while music was offered as a stabilizing and uniting force for everyone present. The monastic ritual began when an ill monk in the infirmary informed his caregivers that he knew his death was approaching. The ailing monk made his confession, according to Christian monastic tradition, and asked for and offered forgiveness to the community. His fellow monks stood around his bed, and the dying monk asked for the sacrament of anointing. Chanting psalms, the community continued to sing as the priest anointed the monk, placing holy oil on his body. The dying monk received the sacrament of the Eucharist, kissed the cross, and then gave a farewell kiss to the members of the community. Paxton notes the intimacy of this gesture and how it reflects the family-like structure of the monastery. It must have been a moving scene. It is, as well, truly a last farewell for the monk and his community, for from this point on, although he will be constantly attended and watched over by a few, the whole community will not be again called together until he is in the midst of his death agony.64

The community then watched and waited for the monk’s death. A servant who was educated in the signs of approaching death remained with the

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monk and watched so that the whole community could gather for the final moments. Once the servant saw that the final moments were approaching, the monk was placed on a blanket with ashes. If the monk was conscious, another monk read the biblical story of the death of Jesus. Otherwise, the monks sang the psalms. Once the dying monk entered his final agony, special boards were clapped together to signal the monks of the monastery to run to the infirmary. The monks chanted the Credo over and over again as they ran to the bedside. They continued to chant until the monk died. If the dying went on for a long time, other prayers were said. If the monk did not die immediately, the community was called together as many times as needed until the monk died. The customary indicates that everyone should be present for the monk’s death.65 Paxton notes that the gestures of running while chanting the Credo makes it clear that the community must attend the moment of death. The soul is somewhat vulnerable at this moment and must be aided in its departure. It is a profound attempt to bring aid to the dying man, through the juxtaposition of action and contemplation in the expression of faith. In the ideal situation the Credo will be chanted right at the moment of death, and that outpouring of faith, no doubt joined by the dying man if possible, will preserve the soul as it leaves the body.66

This ritual became a central image in the development of the field of musicthanatology. Schroeder-Sheker has located in the customaries of Cluny many of the same gestures that the music vigil offers to dying patients: “In the Cluniac teachings, I saw many things that were incredibly relevant. I learned that there was a way of caring, with beauty and intimacy and reverence that could easily be translated to anything that we need today.”67 SchroederSheker noted that music-thanatologists do not recreate these rituals, or any religious rites. Instead, they study religious texts and historical liturgies.68 There are also differences between deathbed rituals of the Cluny monastery and contemporary music-thanatology. The monks of Cluny were steeped in the chant of their daily religious practice. On their deathbeds, they heard their community singing music that was intimate and familiar. Not only had they likely been singing this music for decades, but they had also likely been singing this music with these same men for decades. The deathbed vigil allowed the monk to be wrapped musically in the love of his community and the music of their shared faith. Today, music-thanatologists can replicate neither the community of the monastery nor its intimately familiar musical repertoire. Music-thanatology instead strives to engage in an even more challenging task—to provide the same warmth, love, and intention of wholeness to strangers, using music that

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may be strange to them. The music-thanatologist and the patient engage in a ritual that is mediated by the music itself. The significance of the music and its meaning is unique to each person in the music vigil and may never be expressed in words. In modern medical settings, music-thanatology offers a rarely seen opportunity for patients and families to be together, in an environment of peaceful calm, in a period of time when they do not need to do or say anything. In this expansive space, accompanied by music, anything is possible. RESEARCH ON MUSIC-THANATOLOGY As with any other medical modality, music-thanatology has been called upon to articulate its unique efficacy. It has done so by maintaining a careful balance between the music-thanatologist’s two roles as contemplative musician and clinical provider. Two research projects about the field appeared in 2006 and 2007. They call to mind the dual role of the music-thanatologist as musician-clinician, as one focuses on the quantitative, and the other on the qualitative aspects of the field. A multimethod study of the effects of music-thanatology was carried out at St. John of God Hospital in Geelong, Australia. Its aim was to “implement and evaluate a music-thanatology programme for patients facing the end of life” at that institution.69 During this study, six participants between the ages of 70 and 85 received a total of 21 music vigils. A researcher attended and recorded details of the music vigils and then interviewed family members and staff. The music-thanatologist, Peter Roberts, provided his own reflections on each of the music vigils.70 The study participants reported a variety of responses to the music, including feelings of relaxation and being soothed. One study participant, who researchers call “Robert,” was 83. He had been told he had only a few months to live. Robert described in detail his profound experiences in the music vigils. He reported that the music vigil “took him somewhere.”71 Cox and Roberts report that this place was “not just a place of calm, but somewhere where he experienced love and trust. He called it ‘The Haven—The Place of No Fear.’ ”72 Robert was so profoundly moved by the music that he felt compelled to share, particularly with the medical world, the benefits of music for people without hope. After several music vigils, Robert described an ability to take himself to “The Haven” when the music was not present, and to become calm and peaceful even when he was initially panicked. Music-thanatologist Roberts noted that this patient had moved from “music into silence.”73 Cox and Roberts contend that it is both the prescriptive nature of the music and the compassionate presence of the musician that address the existential suffering that can occur at the end of life. Using a term from the Celtic tradition, they call the music-thanatologist the anam cara, the soul friend.

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The anam cara “sees what is happening, knows what is real, understands and offers a personal self where another can let go in trust and shelter.”74 Cox and Roberts conclude that “music-thanatology offerings change the way people die — isolation and fear are replaced by peace and readiness.”75 It is not only music; it is the prescriptive nature of the music that makes it powerful and it is the presence of the musician that adds the depth of compassion, the genuine presence that with the music and the prescriptiveness creates the safe environment of reverence, peace and tranquility for people to do their own work of unbinding and leave-taking, to move, as Peter says, from music into silence, when his work is done. Its importance is immeasurable.76

The second study was published in the American Journal of Hospice and Palliative Medicine in 2006. Entitled “Music Thanatology: Prescriptive Harp Music as Palliative Care for the Dying Patient,” the study measured vital signs before and after a music vigil for 65 patients. The purpose of the study was to determine the effects of this modality on dying patients, specifically addressing agitation, wakefulness, respiration (rhythm, effort, depth, and rate), and pulse (rate, rhythm, and strength). The study found that patients’ wakefulness decreased during the music vigil, along with their agitation levels. Having pain at the start of the vigil did not prevent patients from experiencing a decrease in agitation by the end of the music vigil. Changes in respiration rates, such as a slower rate and a deeper breath, indicated a calmer state at the end of the vigil. However, there were no significant changes in the rate or quality of the pulse measurement of patients in the study. The authors conclude that a “prescriptive vigil conducted by a trained music thanatologist could provide an effective form of palliative care for dying patients.”77 There are many possibilities for additional studies about music-thanatology. For example, a retrospective chart audit of approximately 1,500 music vigils is underway at Midwest Palliative and Hospice CareCenter. This study will compare vital signs collected before and after music vigils for 1,100 patients in order to assess the efficacy of the intervention through analysis of observed changes. There are a wealth of questions to be pursued in future research, including the impact of music vigils on various systems of the body or the exploration of the more psychological impacts of the music vigil, such as patients learning to use the experience of past music vigils to quiet and comfort themselves when the music-thanatologist is not there. MUSIC-THANATOLOGY AT THE CROSSROADS OF MUSIC AND MEDICINE In the rich history of music and medicine, music-thanatology has arisen at the confluence of a number of cultural streams. It joins the hospice movement

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in assisting patients and families as they accept the end of curative treatment. It joins other therapeutic musical modalities in suggesting that music is an important tool that can be used for healing, even in painful situations. Music-thanatology has also carved out a unique niche within these influences. It serves a single population, dying patients and their loved ones, with particular tools, harp and vocal music, and a compassionate presence. It maintains a dual focus in contemplative musicianship and palliative medicine. And it simultaneously embraces connections to monastic ritual. The interplay of these three forces—music, medicine, and spirituality— will be heard in voices throughout the coming chapters. NOTES 1. The Laughing Man, “Musical Sacramental Midwifery: The Laughing Man Interviews Therese Shroeder-Sheker” (1988): 41. 2. Schroeder-Sheker, “Shaping a Sanctuary with Sound: Music-Thanatology and the Care of the Dying” (1998): 28. 3. Schroeder-Sheker, “Preface” in A Medieval Latin Death Ritual (1993): xiii. 4. West, “Music Therapy in Antiquity” in Music as Medicine: The History of Music Therapy since Antiquity (2000): 52. 5. Ibid., 53. 6. West, “Music Therapy in Antiquity” in Music as Medicine (2000): 51 – 60. Ironically, while the ancient understanding that music has the power to comfort and transform persists, music’s power to cause disturbance or harm is rarely discussed. This is perhaps due to the ubiquitous presence of music in contemporary life in the United States. While moving through daily life it is possible to experience a continuous stream of music in a variety of public and private spaces. At any time, we can use our personal music devices to listen to literally thousands of songs. Apart from ear damage or reflections on social isolation, it is difficult to imagine a case being made for the harmful effects of certain tones or rhythms, though we will see later in this chapter that it was a concern of early contemporary music therapists working in palliative care. 7. Garber, Harmony in Healing (2008): 95. 8. van Gennep, The Rites of Passage (1960): 10 – 11. 9. Paxton, Liturgy and Anthropology: A Monastic Death Ritual of the Eleventh Century (1993). 10. Turner, The Ritual Process: Structure and Anti-Structure (1977): 94 – 96. 11. Begbie, Theology, Music, and Time (2000): 24. 12. Ibid., 26. 13. Becker, “Music, Trancing and the Absence of Pain” in Pain and Its Transformations: The Interface of Biology and Culture (2007): 190 – 91. 14. Shelemay, “Response: Thinking about Music and Pain” in Pain and Its Transformations (2007). 15. Coakley and Shelemay, Pain and Its Transformations (2007): 217 – 18. Discussion is by Howard Fields and is entitled “Discussion: Ritual and Expectation.” 16. Tyler, “The Music Therapy Profession in Modern Britain” in Music as Medicine (2000): 375–79.

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17. Edwards, “The Use of Music in Healthcare Contexts: A Select Review of Writings from the 1890’s to the 1940’s” (2008). 18. Munro and Mount, “Music Therapy in Palliative Care” (1978): 1029. 19. Ibid., 1033. 20. Ibid. 21. Dileo and Dneaster, “Introduction: State of the Art” in Music Therapy at the End of Life (2005): xxi–xxv. 22. Hilliard, “Music Therapy in Hospice and Palliative Care” (2005): 173. 23. Hilliard, Hospice and Palliative Care Music Therapy: A Guide to Program Development and Clinical Care (2005): 14. 24. Ibid., 11–14. 25. Schade, “Just What the Doctor Ordered” (1998): 12. 26. Siebold, The Hospice Movement: Easing Death’s Pains (1992): 14. 27. Stoddard, The Hospice Movement: A Better Way of Caring for the Dying (1978): 20–21. 28. Ibid., 24 – 36. 29. Buck, “Reweaving a Tapestry of Care: Religion, Nursing, and the Meaning of Hospice, 1945–1978” (2007): 115. 30. Ibid., 117. 31. Ibid., 118. 32. Du Boulay, Cicely Saunders: The Founder of the Modern Hospice Movement (1984): 137. 33. Ibid., 62 – 74. 34. Siebold, The Hospice Movement (1992): 70 –72. 35. Ibid., 73 –74. 36. Iglehart, “A New Era of For-Profit Hospice Care — The Medicare Benefit” (2009). 37. Veatch, Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge (2009): 183 – 92. 38. Lewis, Medicine and Care of the Dying: A Modern History (2007): 121. 39. Ibid., 122. 40. Interview with Hilly Bol, September 6, 2008. 41. Schroeder-Sheker, “Shaping a Sanctuary with Sound” (1998): 30. 42. Ibid. 43. Ibid. 44. Peck, “An Interview with Therese Schroeder-Sheker” (2009): 11. 45. Ibid. 46. Schroeder-Sheker, “Musical-Sacramental-Midwifery: The Use of Music in Death and Dying” in Music and Miracles (1992): 21; italics in original. 47. Horrigan, “Conversations: Therese Schroeder-Sheker Music-Thanatology and Spiritual Care for the Dying” (2001). 48. Schroeder-Sheker, “Shaping a Sanctuary with Sound” (1998): 29. 49. Peck, “An Interview with Therese Schroeder-Sheker” (2009): 10. 50. Horrigan, “Conversations” (2001). 51. Schroeder-Sheker, “Music for the Dying: A Personal Account of the New Field of Music Thanatology—History, Theories, and Clinical Narratives” (1993): 40.

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52. Horrigan, “Conversations” (2001). 53. Ibid. 54. Peck, “An Interview with Therese Schroeder-Sheker” (2009): 11. 55. Leeds, Sonic Alchemy: Conversations with Leading Sound Practitioners (1997): 49. 56. Rosenberg, “Musically Midwifing Death” (1990): 10. 57. Ibid. 58. Schroeder-Sheker, Transitus: A Blessed Death in the Modern World (2001): 87; italics in original. 59. The Laughing Man, “Musical Sacramental Midwifery” (1988): 41. 60. Schroeder-Sheker, “Musical-Sacramental-Midwifery” in Music and Miracles (1992): 21. 61. Schroeder-Sheker, “Shaping a Sanctuary with Sound” (1998): 28. 62. Paxton, “From Life to Death” (1994): 27. 63. Schroeder-Sheker, “Preface” in Liturgy and Anthropology: A Monastic Death Ritual of the Eleventh Century (1993): x. 64. Paxton, A Medieval Latin Death Ritual: The Monastic Customaries of Bernard and Ulrich of Cluny (1993): 15. 65. Ibid., 16 –17. 66. Ibid., 20. 67. Leeds, Sonic Alchemy (1997): 52. 68. Schroeder-Sheker, “Shaping a Sanctuary with Sound” (1998): 31. 69. Cox and Roberts, “From Music into Silence: An Exploration of MusicThanatology Vigils at End of Life” (2007): 82. 70. Ibid. 71. Ibid., 84. 72. Ibid. 73. Ibid. 74. Ibid., 88. 75. Ibid., 89. 76. Ibid. 77. Freeman, Caserta, Lund, Rossa, Dowdy, and Partenheimer, “Music Thanatology: Prescriptive Harp Music as Palliative Care for the Dying Patient” (2006): 100.

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CHAPTER 3

Z An Introduction to Music-Thanatology

The use of the left or right hand, the octave being played, the kinds of strings and fingerings used — all these can become conscious choices, which, when combined with the heartfelt disposition of the “midwife,” infuse something into the music that extends beyond what is measured by our material senses. The music pours over the dying person like a balm. It’s a new kind of anointing. —Therese Schroeder-Sheker A friend recently spent some time in a Boston hospital, where she noticed a woman with a harp standing in the hallway speaking softly to two other people. After learning about my work, my friend was thrilled to actually see a music-thanatologist at her local hospital. The next time she saw me, she couldn’t wait to tell me about it: “Jen, I saw a music-thanatologist last weekend! She was really involved in her conversation, so my husband and I just started talking loudly about music-thanatology. We used your name a lot, so that she would hear us and we could go introduce ourselves. But she didn’t seem to notice us at all.” I gently told my friend that I didn’t think this woman was a music-thanatologist, and that instead she might have been a music therapist, therapeutic musician, or a volunteer. My friend’s comments raised an important question about harpists in hospitals and how they differ from one another. What are the particular qualities that music-thanatologists bring to the medical setting, and how do these qualities differ from other types of musicians? This chapter will offer an introduction to music-thanatology and will outline some of the field’s unique qualities. DEFINING MUSIC-THANATOLOGY Music-thanatology locates itself within the medical subspecialty of palliative medicine. The music-thanatologist specializes in caring for the needs

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of the dying, offering live harp and vocal music at the bedside. Attending carefully to the patient’s vital signs and the needs of their loved ones, the music-thanatologist creates an individually tailored musical prescription for each patient. The time the music-thanatologist spends with the patient and family is called a music vigil. These visits typically last between 30 and 60 minutes but may be as short as a few minutes or as long as several hours. Everything depends on the needs of the patient and family in that moment. The intent of the music vigil is to relieve suffering, which may be physical, emotional, or spiritual. Responses to a music vigil can include sleep or deep relaxation, relief from pain or agitation, and changes in vital signs. Patients and family members may express deep emotions during a music vigil, for example, choosing the vigil as a time to say good-bye. When family and friends are present, the music-thanatologist considers and includes the needs of everyone in the room. A restless patient, a tearful friend, and an anxious relative who has just arrived from some distance may have different, or even contradictory, needs. The music-thanatologist must maintain an awareness of all the activity in the room. While working for a hospital, a hospice, or as a private contractor for a number of institutions, the music-thanatologist collaborates with members of medical, psychosocial, and spiritual care teams. Effective collaboration requires that the music-thanatologist be able to offer robust, ongoing education so that colleagues can make well-informed referrals. This ongoing education differs among institutions and may include new employee orientation, formal lectures, educational presentations at staff meetings, brochures, and outreach to colleagues who may wish to attend a music vigil. An institution may require a physician’s order for a music vigil, and music-thanatologists are often required to document in the patient’s medical chart. Music-thanatologists may attend care plan meetings with patients and families or play an active role on interdisciplinary team meetings. In addition to charting in the patient’s medical record, some musicthanatology practices make use of the clinical narrative, which captures both the clinical data observed in the music vigil and more nuanced aspects of the effects of the music. The clinical narrative can be used for clinical discussions, case studies, professional development, and education. Two recent articles by Sharon Murfin and Mel Haberman highlight the importance of the narrative. Murfin and Haberman completed a one-year study at the Sacred Heart Medical Center in Spokane, Washington, where music-thanatology has been offered since 2002.1 They studied the narratives written after each music vigil in order to both draw attention to and describe the needs of the dying, and to advance the field of music-thanatology in meeting those needs. Each narrative includes existing diagnoses, information about medication, the known emotional state of the patient and family, and other detailed information. The clinical narrative describes the music vigil in detail, including musical choices, observed

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changes in the patient and family, spoken conversation, and details about the prescriptive process, the term used for the process of assessing the patient and delivering music at the bedside. At Spokane’s Sacred Heart Medical Center, music-thanatologists utilized two forms of documentation. The observation form documents a minimum of 25 patient characteristics before and after the music vigils. The clinical narrative creates a narrative record of the music vigil. Murfin and Haberman suggest that the use of the clinical narrative is uniquely suited to the practice of music-thanatology. Although the observation form documents discreet elements of a patient’s physiological and behavioral responses, the clinical narrative allows the practitioner to reintegrate as a participant – observer every awareness and perception that emerges while interacting with the patient as a holistic being. The narrative situates the music-thanatologist in the beauty, reverence, intimacy, and respect offered to the dying persons, which are hallmarks of music-thanatology practice.2

The observation form demonstrates the efficacy of the prescriptive music, while the clinical narrative captures something beyond the changes in vital signs. Murfin and Haberman describe this as “the dialectic and ephemeral nature of the interpersonal bonding and communication that occurs on many levels between the dying person, the music, and the music-thantologist.”3 The narrative does not force the multiple voices into a particular form. Murfin and Haberman conclude that the clinical narrative instead offers something new: “Simply put, the patient’s dynamic unbinding processes and responses to prescriptive music can’t wisely be reduced or isolated, and instead invite us to walk with them in new and living ways.”4 These new ways of being with the dying are made audible in the prescriptive process. CREATING PRESCRIPTIVE MUSIC Music-thanatologists use the term prescriptive music to describe the harp and vocal music they provide in the music vigil. The term reflects musicthanatology’s focus on responding to the unique needs of individual patients. No two music vigils are the same. Prior to the visit, the music-thanatologist receives information about the patient from the referral source, most often a nurse, social worker, chaplain, or physician who is already involved in the patient’s care. The type of information most often includes the patient’s disease process, symptoms, prognosis, family dynamics, psychosocial factors, and individual concerns about the patient’s level of comfort. The referral source may indicate a particular reason for the referral, such as restlessness, agitation, pain, or inability to sleep. The referral may be for emotional or spiritual reasons, such as grief, fear, anxiety, difficulty coming to terms

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with the end of life, family conflicts, or unresolved spiritual or religious questions. From the moment they enter the room, the music-thanatologist engages in the prescriptive process. After speaking with the patient’s nurse or caregiver, the music-thanatologist introduces himself or herself to the patient and family and explains what it about to happen. Whether or not the patient is alert and oriented, the music-thanatologist addresses the patient directly during this introduction. He or she continues the assessment by checking the patient’s pulse and respirations, observing his or her countenance, and evaluating any indication of pain. The patient or family themselves may offer brief verbal information about their immediate needs. The music-thanatologist prepares an environment that is restful and sufficiently quiet. He or she makes certain there are enough chairs, turns off all televisions and music players, and adjusts the lighting when appropriate. The door may be closed for quiet or left open for family members who are arriving or leaving. The music-thanatologist places his or her chair and harp within the line of sight of the patient, for the patient’s benefit and so that he or she can gather visual information about the patient’s responses. If appropriate, a music-thanatologist may invite family members to draw closer to the bedside during the music vigil. The music-thanatologist may make brief initial remarks about the music and then offer a few moments of silence before beginning to sing or play the harp. The music-thanatologist is already paying close attention to the responses of the patient, such as their respirations and countenance, in order to accompany them, right where they are, right in that moment. The prescriptive process utilizes what music-thanatologists call the raw materials of music. These elements can be as wide-ranging as the rhythm, melody, or harmony of music, or as small a gesture as a single interval from one note to the next. They include timbre, meter, mode, volume, and pacing, and whether the music-thanatologist uses harp, voice, or both. Like the chemical compounds within a particular medication, the raw materials of music combine to create a prescription for the individual patient. Music-thanatologists sometimes refer to the raw materials as their tool kit or medicine bag, and the raw materials offer possibilities for the relief of suffering. According to Therese Schroeder-Sheker, the music vigil begins with “measurable vital signs” and then offers the opportunity for a change to occur.5 As the heartbeat and breathing patterns change with the delivery of the live music played at the bedside, slowly, gradually, everything shifts. A deepening occurs, and a great deal of energy is suddenly available again for the dying person to attend to all the interior work that dying, reconciliation, forgiveness, acceptance, loving, letting go, and saying goodbye entails.6

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Music-thanatologists rely on a combination of musical and clinical training for their prescriptive process. They also rely on an informed intuition. Anna Fiasca, a music-thanatologist in The Dalles, Oregon describes the balance between relying on what she knows about the music and what comes to her intuitively.7 Both play a role. When something comes to me, I might reflect for a moment on why that’s coming, and if it makes sense to me. Often, after the vigil when I’m reflecting on the music and the vigil, I become aware of many connections between what was occurring and what music I responded with — connections I wasn’t consciously aware of in the vigil. I realize even more deeply why that piece came to me when it did and why it made sense. There’s a lot of space in there for my application of the music and how I made the choices. When I’m thinking more analytically — what’s going on here, what do I know about music that might be helpful — I also keep in mind that OK, maybe I know that for most people if I choose something that’s minor in nature they will chose to move their focus inward. I’m also aware that that may not be the case for this person. And so it’s a combination of the thinking through and the trusting what is arising— I go ahead and try what seems a supportive musical response, but I’m aware of the patient’s response to it, and ready to adjust to whatever phenomenological changes I observe.

The prescriptive process has changed for Fiasca over time, as a result of “being with people over and over again, watching how different elements of music affect people.” She has realized that there are no hard and fast rules — even guidelines seems too strong a word. “People are so unique,” Fiasca notes. For Donna Madej, a music-thanatologist at the Sacred Heart Medical Center in Spokane, Washington, the prescriptive process includes the “clinical knowledge of [the patient’s] respirations, heart rate . . . symptoms, pain levels, alertness” as well as the emotions of the people around them.8 Then she tries to “let the music work.” She uses the musical elements to relieve physical and spiritual suffering and to “address the dynamics that are present in the room with the family. It’s a . . . privilege. [There’s so] much intimacy in that room.” To move into that room, and to be present to what is, and to be open to bring out really I think the best of what is possible in that room. Because so often the music turns people toward the patient, toward the meaning of their dying, in ways that maybe they haven’t had the space to do that. The music seems to stop everything —to stop time— and give people the space to move toward the dying.

Madej echoes other music-thanatologists when she acknowledges her musical and clinical skills but states that she does not cause the changes she observes. Instead, she says “the music is doing the changing.”

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Music-thanatologists sometimes describe prescriptive music as accompaniment. For Mary Werner, a music-thanatologist at St. Patrick Hospital in Missoula, Montana, this definition came out of her musical education on piano.9 Werner pays very close attention when she first enters a patient’s room and thinks about “the tenor of the room, the emotional state of the people present.” She notices when the television seems to be on all the time, or when families bring personal touches to the room like flowers or a plant from home. In her own prescriptive process, she distinguishes between the use of harp and the use of voice, noting the particular power of singing: “I’ve found that since the training, vocal work is something that I save . . . for really going deep. I don’t usually pull that out of the bag unless I feel like that’s a place that people can go. The harp is my primary medicine.” Gary Plouff, a music-thanatologist at Sacred Heart Medical Center in Eugene, Oregon, also mentions the power of the voice in the music vigil.10 He notes that over time, “through repetition, continual working in the field and using the music in different situations . . . you come to some conclusions about it.” One of his conclusions is that singing often leads patients and family members to become tearful. He believes this has to do with the power of the singing voice, which can make the space “very intimate.” The singing voice “touches the heart. It just seems to go to the core of the heart.” Like Werner, Plouff carefully chooses when to use the voice in the music vigil: “[W]hen I feel a lot of people . . . not quite able to express grief or whatever they need to express, that often this sung text will open that up.” In speaking about their prescriptive process, some music-thanatologists choose not to use the term prescriptive music, wanting to avoid the suggestion that some pieces of music are prescriptive, while others are not. Instead, they focus on the idea of offering music “in a prescriptive way,” a distinction they believe expresses more fully the flexibility of the process. Sharilyn Cohn, executive director and cofounder of SacredFlight in Portland, Oregon, speaks more to “the prescriptive delivery of music” rather than the term prescriptive music.11 Is music in and of itself prescriptive? Perhaps more accurately, the musical elements found in music hold potential prescriptive qualities. Just as medicine sitting in a bottle has unrealized potential, so does music. The unlocking or realization of this prescriptive potential occurs through the prescriptive delivery of music by the music-thanatologist. It involves taking music, analyzing its musical elements for their potential prescriptive qualities, determining the appropriateness of such during each vigil, and then releasing that potential through the prescriptive delivery of the music. It requires special training, deep inner work, and presence of being.

According to the Web site of the Music-Thanatology Association International, prescriptive music is “a way of being present to both the obvious

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and the subtle aspects of a situation, analyzing options, and responding in a deeply musical way.” The patient always remains the focal point and leader of the music vigil. Whether conscious or unconscious, the patient is always in charge of the musical direction because we connect at the level of breath, pulse, temperature, pain, effort, and tension; things that we all share by dint of our basic humanity. With this focus, the music can address the needs of each unique individual. In this way, the music seeks to be an expression of beauty and love; and as such, it transcends diverse affiliations of faith and culture.12

Music-thanatology has suggested that unfamiliar music is more appropriate for the end of life because it does not invoke past memories and associations. During the prescriptive process, the music-thanatologist is aware of whether the music they are playing is likely to be familiar. The dying patient is engaged in letting go of his or her personal identity and experiences, and playing unfamiliar music may facilitate this transition. Schroeder-Sheker has argued that during the dying process, the individuality of the patient — marked by nationality, race, language, religion, education level, and class — begins to diminish and may ultimately become peripheral. During the “art of dying,” the individual is in a process of transformation. “The process of being carved out makes room for something or someone entirely new.”13 Acknowledging the importance of cultural competence in caring for the dying, Schroeder-Sheker also notes the paradox that arises as these cultural markers are simultaneously falling away. Schroeder-Sheker has had almost “no experience” with patients in their final days or hours requesting particular music: “Somehow, in the deeply layered process of ‘letting go,’ many aspects of identity, including ‘favorite things’ cease being essentials. This terrain of shifting essentials is part of the human-making experience of mortality.”14 At the same time, sometimes familiarity as a raw material is beneficial. Several music-thanatologists described experiences in their clinical practice in which familiar music was an appropriate prescriptive choice. Anna Fiasca believes that patients should ultimately determine the choice of music, even if that music is familiar. I have had experiences where if I hadn’t offered something that they requested, I don’t know if I would have gotten beyond that and really been able to offer a vigil. All of this just says to me that there really should be no rules at all, as far as what music is the right music for a given situation. I think we need to be very open, very present, and let the patient show us the way.

Music-thanatologists draw upon a shared body of music, which they use as a starting point for the raw materials of music. Although they agree that there are very few limits on the possibilities for music, having a shared body

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of music allows them to collaborate easily and to train new students. Many music-thanatologists have learned additional material that reflects the cultural or religious identities of the populations they serve. They believe in an open approach using a variety of musical sources. Even so, they also acknowledge that there are some people who will not benefit from musicthanatology. Anna Fiasca notes that there is no simple way to make this determination. There may be people we are not able to serve. I don’t mean an ethnic group. There may be many people in many non-Western cultures who might respond very well. But for others it might not fall on their ears in a way that’s positive. We’re starting to move into new territory. People are experimenting with different things.

As they experiment with new things, music-thanatologists rely on the raw materials to offer a range of choices, and they acknowledge that the way is not always clear. Sandy LaForge, a music-thanatologist who lives in Missoula, Montana, believes that “each person is such a mystery. And death itself is such a mystery.”15 Medicine is an art, as is music-thanatology. Because of this mystery, LaForge says, music-thanatologists must become “comfortable with ambiguity.” There is no set formula, and the shared body of music provides a starting point for the practitioner’s unfolding encounter with the patient and family. The goal of prescriptive music is no less than a transformation of the dying process. According to Schroeder-Sheker, “Our ultimate goal is to help facilitate a blessed, peaceful or a conscious death and, thus, reintegrate death back into the life cycle as yet another sacred, human-making threshold, instead of something perceived as an enemy, or a medical or nursing failure.”16 A conscious or blessed death can have a powerful effect on the “entire human biography” of the individual, as well as those around them. A good death affects the whole community, including the medical culture, for years to come. It doesn’t mean that suffering has been eliminated, but if meaning has been found — ultimate meaning — we are surely, for all time, crowned, restored, and regal even in our vulnerability and dissolution. It’s the life and/or the death that has been stripped of meaning or reduced to statistics that is tragic. The life unwitnessed, unremembered, is demoralizing to us all.17

THE ROLE OF THE CONFIDENT GUEST Music-thanatologists carefully choose their words when entering and exiting the music vigil. Schroeder-Sheker has called music-thanatology a “nontalk modality.”18 The music vigil can provide an alternative to verbal processing with other members of the interdisciplinary team or can help to

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facilitate it. In fact, one chaplain finds the music to be very helpful to his work and highlighted the difference he sees in patients after a music vigil: “When I . . . have done patient care following a vigil, it’s really amazing. It’s like the groundwork has been laid for just an awesome conversation. Really honest conversation.” Music-thanatologists can call on other members of the interdisciplinary team when they feel a patient or family requires counseling or additional support. The offering of music without requiring the patient to respond is a crucial component of the music vigil environment. The music-thanatologist provides music into which the patient can rest, frequently referred to as sacred space. In this sacred space, the patient does not have to watch politely or applaud. Instead, he or she is welcome to do anything that expresses or relieves suffering. Ultimately, the patient directs the vigil with his or her physical and emotional responses, but not in a way that requires any energy or engagement. The patient can rely on the music-thanatologist’s sensitivity and attention without having to offer any specific instruction. Music-thanatologists sometimes use the term confident guest to describe this role, which is both humble and directive. During a music vigil, all attention is directed toward the patient and family members. When the patient and family feels the need to host or take care of the music-thanatologist, the vigil risks becoming a small, bedside concert. While this can be entertaining, it limits the more vast possibility of truly relieving suffering. The confident guest explains what will happen; for example, that music will alternate with periods of silence. This relieves those present of the need to speak or even applaud, to react, or to direct the moment. The confident guest sees to his or her own needs, eases a burden rather than adds one, and does not need to be shown the door when it is time to go, so that the patient and family can remain in quiet relaxation even after the music vigil is over. TYPES OF MUSIC VIGILS Music-thanatologists do not exclusively see patients whose deaths are imminently expected within 24 – 48 hours. It is extremely difficult, even for medical processionals, to predict when death will occur. Patients regularly defy physical indicators, living significantly longer periods of time than predicted, or having a sudden decline days, weeks, or even months sooner than expected. For this reason, music-thanatologists make a broad distinction between music vigils for patients who are close to death (imminent) and those whose death is still a number of weeks, months, or even years away (processing). The imminency vigil is a referral for someone who has 24 – 48 hours to live. During these vigils, the music-thanatologist is typically with a patient who is not alert or oriented. The music-thanatologist

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may receive an urgent referral or may have an ongoing relationship with the patient, which allows for a transition from processing vigils through the end of life. Sharon Murfin and Mel Haberman offer a poignant observation about the term imminent in their discussion of the clinical narrative: “The impulse to protect is aroused by this language, as the dying person is seen as one in extremis, literally as if in danger of falling over a cliff or into an abyss.”19 Exploring the alternative term, immanent, they state that music-thanatology has “particular resonance with the dynamic qualities of immanence at the deathbed vigil” because of live music’s capacity for flexibility and responsiveness. Moreover, they contend that “creating space where immanence can unfold and be supported is a particular aspect of the palliative care offered by the prescriptive music of the music-thanatology vigil.”20 During the imminent music vigil, the music-thanatologist may offer some gentle guidance to family members about the patient’s status. In other music vigils, the family may want to tell stories, joke, or leave the room. The music-thanatologist responds musically to the activity of the room, no matter what happens. Patients and families remain the experts, and the music offers options rather than directives. During the processing vigil, the patient is not actively dying and may even be alert, oriented, and able to communicate. The focus of these visits varies. They may be in response to symptom management, such as assisting a patient with pain or labored breathing. They may also assist with emotional or spiritual suffering, as the patient transitions from aggressive treatment to comfort measures at the end of life. Music-thanatologists make their own assessments of the type of vigil when they arrive. A patient may become imminent quickly, or a patient who appeared to be actively dying may become more alert and engage with family members or staff in conversation and activity. The dying process varies from one person to another, and the music-thanatologist must remain attentive and open, noticing even the smallest changes that indicate the patient’s evolving needs. WHY THE HARP? All music-thanatologists play the harp and use harp and vocal music in the music vigil. The harps are typically lever harps, which are smaller and more portable than the larger pedal harps seen in orchestras. Although jokes about angels abound, the reasons for using harp music are primarily practical. The spacious sound box allows the musical sound to reverberate through a large space and offers significant resonance and richness of tone. This resonant sound is particularly important in busy, and often noisy, medical settings. The size of the harp and the number of strings provide a wide range of tones

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from high, shimmering notes at the top of the register to deep bass notes at the bottom. The harp is a polyphonic instrument, meaning that it can play more than one note at a time, like a piano or a guitar. Lever harps fit easily into most cars, elevators, and hospital rooms. Many music-thanatologists use wheels or a cart of some kind, particularly if their work involves travel to different institutions. As the music-thanatologist meets patients and families for the first time, the harp may invoke religious images of the afterlife. Most music-thanatologists have countless stories of patients and families making references to angels playing harps in heaven. These responses have undertones that range from casual interest to real anxiety. In fact, family members may refuse a music vigil out of fear that the patient will hear the music and believe they have died and gone to heaven. These associations can often be assuaged by reassuring the family and speaking directly to the patient to introduce the music-thanatologist and what is going to happen in the music vigil. The harp itself is central to the practice of music-thanatology. Its physical presence is often an object of great interest for the patient and family, and for others who see it in the hall or elevator. Most people have never seen a harp and are intrigued by the object itself, even before they hear the music. Annie Burgard, a music-thanatologist at Palmetto Health Hospitals in Columbia, South Carolina, describes what it’s like to bring a harp to a patient for the first time.21 When you walk into someone’s house, or when you walk into the bedside, the harp becomes the focus. It’s not the music-thanatology; the harp is the first thing. It helps things get going without the focus being on you. It’s not threatening. And then it’s beautiful to look at, beautiful to hear. That’s why I call my Web site “harp bridge.” It really does become the bridge between many things.

The harp carries metaphorical significance as well. Schroeder-Sheker has described the way that the harp must be empty in order for the sound to resonate. It also must be tuned regularly. To tune and to stretch the strings is a metaphor for our own soul life. Every single one of us can do with reminders about how to be in tune with others and with ourselves. Is my thinking in tune with my feeling? Is my feeling in tune with my doing? All these relationships are taught, little by little by little, when you have constantly to tune and stretch and refine strings.22

Whether it serves as a bridge, a beautiful object, or an image of the musicthanatologist’s inner life, the harp is a unique presence in the music vigil. It provides both a tonal quality and a physical presence that transforms the space of the music vigil. With the harp present, the hospital or nursing home

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room becomes a space for spacious quiet and reflection — a place of possibility, rather than routine. EDUCATING NEW MUSIC-THANATOLOGISTS The nuanced set of skills required in a music vigil is developed during the practitioner’s educational formation. The School of Music-Thanatology at the Chalice of Repose Project in Missoula, Montana, graduated its first class in 1994. The seeds of this graduation were planted in 1990, when medievalist Paul Dietrich invited Therese Schroeder-Sheker to give a concert during the annual conference of the Rocky Mountain Medieval and Renaissance Association. The following day, she made a formal presentation on music-thanatology to physicians and nurses at the Institute for Medicine and the Humanities, a project between St. Patrick Hospital and the University of Montana. At the dinner that followed in the evening, the president of the hospital, Lawrence White, spoke with Schroeder-Sheker about the possibility of moving the Chalice of Repose Project from Denver, where it was founded, to Missoula. Over 2 years, they developed a plan for this transition. Schroeder-Sheker and several of her students from Denver moved to Missoula in 1992.23 The 2-year training and certification in musicthanatology graduated five classes of students over 10 years, from 1992 to 2002. This work has been written about extensively in Schroeder-Sheker’s monograph, Transitus: A Blessed Death in the Modern World. In 2002, the School of Music-Thanatology in Missoula closed, and the Chalice of Repose Project relocated to Mount Angel, Oregon. The closing of the first School of Music-Thanatology and the resulting loss of professional resources caused anxiety among the school’s alumni. Deeply concerned about the future of the field, they turned to the Music-Thanatology Association International (MTAI), founded in 1999. The MTAI had ratified an initial constitution, elected officers, and agreed to support one another in order to deepen the work of music-thanatology. They invited other musicthanatologists to join them, created a Web site, developed a newsletter, and began to offer an annual conference open to music-thanatologists, friends, and supporters. It became clear to MTAI members that the field of music-thanatology needed a published set of standards and competencies. This project was led by music-thanatologists Judy Fay and Sr. Vivian Ripp. Ripp was also a chaplain with experience in the certification process for the National Association of Catholic Chaplains, and Fay was also a counselor who was committed to the education of new music-thanatologists. The committee they formed determined that all music-thanatologists should demonstrate competencies in personal, musical, medical, clinical, and thanatological areas. The personal competencies focus primarily on the maturity and integrity required to

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build relationships with the dying and their loved ones, to maintain excellent self-care, and to build supportive networks with other professionals. Musical competencies focus on the ability to utilize live harp and vocal music at the bedside. Medical competencies focus on basic anatomy and physiology, disease processes, pain and symptom management at the end of life, and basic knowledge about pharmaceuticals used for hospice and palliative care. Clinical competencies for the music-thanatologist include particular knowledge of the use of prescriptive music at the bedside and the delivery of this music within a variety of religious and cultural systems. Finally, the thanatological competencies relate to knowledge of modern palliative medicine and hospice, an understanding of the dying process, anthropological understandings of ritual, and some of the ways in which the history of Christianity has influenced attitudes toward death in Western cultures. Once the standards and competencies were written and approved of by the body of the MTAI, it was then possible for the organization to establish an independent certification process. Applicants for certification are required to have completed their music-thanatology education and to have completed 50 supervised music vigils. Certification applicants must also participate in clinical discussions and demonstrate mastery of the shared body of music. Once these initial requirements are met, the applicant engages in a process with the MTAI’s Certification Team to demonstrate required competencies. New music-thanatologists can complete their formal education in one of two ways. First, they may complete their work through the Chalice of Repose Project, which offers a Contemplative Musicianship Program and a MusicThanatology Program. According to the Chalice of Repose Web site, both are distance learning programs that combine Web lectures and broadcasts with intensive residencies. The Contemplative Musician Program is a prerequisite for the Music-Thanatology Program. Second, a music-thanatology certification preparation program began in Portland, Oregon, in fall 2007. This program, which is affiliated with Lane Community College, offers 20 weekend didactic sessions in Portland, as well as a supervised internship with a certified music-thanatologist. This internship includes a minimum of 50 supervised music vigils. Students attend clinical discussions and have an opportunity to perform in large regional public performances with other music-thanatologists and musicians. Students who complete this preparatory program are encouraged to apply for certification through the MTAI. CREATING A NEW TRAINING PROGRAM Jane Franz, a music-thanatologist in the spiritual care department at Sacred Heart Medical Center in Eugene, Oregon, had a conversation with a

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hospital chaplain that motivated her to take seriously the need to train new music-thanatologists.24 Dr. David Waggoner, a chaplain who had completed his doctoral work in higher education policy and management, asked her about the age of most practicing music-thanatologists. Franz quickly calculated that majority would be retired in the next 15–20 years and realized that another school needed to open if the field was to have a future. She began to brainstorm with music-thanatologist Sharilyn Cohn. Although neither had experience in higher education administration, Franz and Cohn began to plan for their future school. They called on Waggoner’s expertise for help with curriculum development. They approached Lane Community College for a possible home for the school. Lane Community College offered to take on the certification preparation program based on the competency standards that had been established by the MTAI. The school would offer students course credit for their internship. Franz and Cohn would serve as the directors of the program. With the curriculum and leadership in place, they confronted the problem of finding faculty members. They made a formal presentation on their curriculum to 10 musicthanatology colleagues in Cohn’s living room. At the end of the presentation, Franz and Cohn asked their colleagues to sign up for any classes they were interested in teaching. Franz remembers their eager response. And that’s all I said. “Sharilyn will be in the kitchen with the master copy.” You’ll have 45 minutes to talk it over. They were trampling each other to get to the kitchen. They couldn’t sign up fast enough to teach classes. It was amazing. Sharilyn and I were in tears at the end.

The faculty did not ask for salary information at the meeting. Franz knew that they would be paid only for their teaching hours, and not for the hours of preparation required to implement the new curriculum, and she prepared for this conversation before the meeting. But the topic simply never came up. Franz recalls, “[Until] the day they received their first paychecks, not one of our faculty ever asked what they would be paid, or if they would be paid. Never once. We were ready to tell them, but they never asked.” CONCLUSION The field of music-thanatology is evolving from its initial inception period to a complex profession utilized in a variety of settings around the world. The following chapters will attempt to capture many different voices in this evolution, from the practitioners to referral sources to the patients and families who have experienced a music vigil. Like their choice of music in the vigil setting, music-thanatologists must use great dexterity as they enter new settings, offer ongoing education, and introduce themselves to patients and families. As end-of-life care continues to emerge as a topic of national

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conversation, it seems likely that music-thanatology will be increasingly utilized as a resource for patients and families. NOTES Epigraph from The Laughing Man, “Musical Sacramental Midwifery: The Laughing Man Interviews Therese Shroeder-Sheker” (1988): 42. 1. Murfin and Haberman, “Building the Ship of Death: Part I” (2007): 619. 2. Murfin and Haberman, “Building the Ship of Death: Part II” (2008): 71; italics in original. 3. Ibid., 71. 4. Murfin and Haberman, “Building the Ship of Death: Part I” (2007): 622. 5. Schroeder-Sheker, “Prescriptive Music: Sounding Our Transitions” (2005): 57. 6. Ibid. 7. Telephone interview with Anna Fiasca, July 2, 2008. 8. Telephone interview with Donna Madej and Betty Barber, June 29, 2008. 9. Interview with Mary Werner, September 9, 2008. 10. Interview with Gary Plouff, April 26, 2008. 11. Telephone interview with Sharilyn Cohn and Barbara Cabot, June 24, 2008. 12. “The Music,” Music Thanatology Association International Web site, http:// www.mtai.org/index.php/what_is/category/the_music/ (accessed June 1, 2009). 13. Schroeder-Sheker, “Letting Go; The Paradox of Cultural Competence in End-of-Life Care” (2007): 163. 14. Schroeder-Sheker, “Narrative Medicine and Unresolved, End-of-Life Longing” (2006): 171. 15. Interview with Sandy LaForge, September 11, 2008. 16. Schroeder-Sheker, “Narrative Medicine and Unresolved, End-of-Life Longing” (2006): 169. 17. Horrigan, “Conversations: Therese Schroeder-Sheker Music-Thanatology and Spiritual Care for the Dying” (2001). 18. Ibid. 19. Murfin and Haberman, “Building the Ship of Death: Part I” (2007): 620. 20. Ibid. 21. Telephone interview with Annie Burgard, August 3, 2008. 22. Zaleski, Kaufman, and Goleman, Gifts of the Spirit: Living the Wisdom of the Great Religious Traditions (1997): 242. 23. Schroeder-Sheker, Transitus: A Blessed Death in the Modern World (2001): 86 – 87. 24. Telephone interview with Jane Franz, June 30, 2008.

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CHAPTER 4

Z Stories from the Bedside

The body has this innate intelligence. The body knows how to get born. The body knew how for me to have a baby when I had a baby. And then I came to realize —Hey, the body knows how to die. Dad’s body knew, each thing shutting down. It’s like a computer shutting down. The body has this innate intelligence. And it seems like the vibrations of the music kind of tap into that, and help that to be an orderly, peaceful process. Because it seems like in order for the body to die that the mind has to be able to let go and accept and the body has to be doing this shutting down. And both these things have to be together. Because if one or the other thing, if they’re not in harmony together, then you’ve got this suffering. And so music-thanatology alleviates suffering in that way. —Family member, reflecting on a music vigil Music-thanatology uses music in place of words. As a result, it is difficult to convey how a music vigil will sound and feel. Many layers of emotions may arise, along with spiritual and religious questions or physical sensations — both for the patient and for family members. Among these multiple perspectives, one person’s account of the vigil may vary widely from another’s. This chapter is a journey though stories of music vigils, told by a variety of voices. Roles are not always clearly defined in the music vigil, and several of these voices occupy multiple roles, serving both as nurse and patient, or as administrator and daughter. The stories are the response to an open-ended question about a music vigil that was particularly important or that had stayed with the interviewee over time. In the case of a patient or family member, it may have been the only music vigil they ever experienced. In most cases, though not all, the story they told was particularly meaningful to them. In other cases, the story highlights a particular insight or reflects a moment of transition in the patient’s dying process.

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This collection of stories is the heart of this book. It is an invitation to the bedside and a firsthand account of the music vigil. In an attempt to allow for a stronger sense of the individual experience, I have utilized extended quotations. This brief collection of stories is not intended as a representative account of the music vigil experience, but certain overarching themes emerge. These themes include the tenderness that family members show in the music vigil and the ways in which the music vigil can help with the process of letting go. In some stories, the patient describes the experience of the vigil; in others, staff members share the personal impact the music has had on them. Some stories contain tension or grief. Others contain surprise. Like music-thanatology itself, these stories are an invitation to be present, to witness, and to listen carefully to the compassion that is offered to dying patients, not only through music but through the attention of those who love and care for them. FAMILY TENDERNESS IN THE MUSIC VIGIL One of the hallmarks of the music vigil is the way in which the music provides a space for the expression of tenderness between family members. Those present may not know exactly what to do and may be making up their response to the dying process moment by moment. The music can provide a gentle structure in which they can feel their way through the new territory. In this story, a young woman is surrounded by her parents and sister. Musicthanatologist Tony Pederson of Midwest Palliative and Hospice CareCenter in Glenview, Illinois, uses the music to accompany not only her breathing, but also the gentle touch that her family offers.1 I was playing for this patient, and she was having a little bit of trouble breathing, there was a little hitch, a little moan on each exhalation. The sort of moan that doesn’t really sound like pain, especially since her brow is really smooth, and there’s not a lot of tension evident in her body. It sounds like she’s keeping her airway clear. And so it’s one of the things that I can point out. Because of course the family is concerned that she is in pain. I can mention this little bit of evidence that maybe it’s not pain, since she can’t cough, that little moan might be a more comfortable way to breathe through the congestion. . . . But the other thing that was happening in this vigil . . . was that it was a younger woman and her parents were there. And her sister . . . was obviously very involved and attentive and really present at the bedside. And when she had to step away to cough or blow her nose or something, the parents came up to the bedside. And it became an opportunity for them to have this tender moment. They each took her hand, and it was funny, one of them had this agenda. He had decided that this was what they were going to do, and he really was encouraging his wife to do the same. She was a little more trepidacious, a little more leery, didn’t want to mess things up, cause pain or distress. But the husband was really going to do this — and wanted to stroke his daughter’s arm,

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and stand with her, and really take the opportunity to have this time. It was this tender moment and he was really going to be present for it. And it was neat for me, because you know usually at some point I will stop and ask people how they’re doing, if they’ve had enough, or want a little more. And I wasn’t sure in this one, how it was going to go. So I stopped and asked, and he looked at me very seriously, and said, “No, that was good. You can do about as much of that as you want.” So I did a little more and that’s when he embraced this opportunity to really be with her in this time . . . It was a good thing I think for the siblings to see and they also kind of stayed back and let the parents be there with her.

He does not speculate about the nature of this father’s agenda. Instead, he relies on the prescriptive process. It’s tough, that’s one of the tough things about this job is that I don’t have the background. I don’t know what their history is. I can just say that he wanted to stroke her arm and did for a long time. And what I can do in that context is — he was also a little unsure of how to be at the bedside, but really wanted to be there. So setting up a regular metered musical line gave him a pacing. Gave him a structure to do the stroking . . . and after some extended periods I could taper and test the waters to see if he was ready to be done. And he wasn’t, and so the music can sort of turn around and reengage. And at that time I was really accompanying him, because the patient had gotten into a really steady place. And it’s not that my focus shifted as much as expanded. Like I don’t leave her behind but I add him.

Pederson continued to use different musical properties to draw the family together as they sat with the patient. There’s this respect for the different places that people are at. And I think about that in terms of the patient is doing one thing, focused on the work of breathing and not really engaged in an obvious way with her surroundings. So that, musically . . . had a lot to do with maintaining this reliability of chord progression. So as I would move away from the tonic, I needed to be reliably coming back to the tonic. And doing that in the context of the regular stroking of the arm makes a lot of sense. But we also have the mother that’s not entirely comfortable with the whole situation with her daughter. And so providing a melodic line that can occupy her in a way that doesn’t get heavy and dreary is also important. And then sort of the last part of that is this really judicious, minimal use of harmony on the harp, I’m talking sparse, letting these harmonies of the sixth sort of ring and be in the space. To me this had a lot to do with this picture of relationship. So there wasn’t a lot going on in terms of a harmonic line or flow. Sometimes you know those harmonies do a lot of good moving along in parallel. And this wasn’t so much like that, just little moments that would appear. And they were simply restful instances of reflection rather than a really tight moving in tandem.

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Watching the patient and family carefully, he soon saw indications that the music vigil was drawing to a close. When I later started to extend the rubatos and taper it down and actually shifted the rhythm of the whole progression that I was doing and he let his stroking slow and kind of taper off . . . He was ready to be done. He changed his hand position and went from stroking her hand, and then he put his hand on her back, and just held her hand. And it was clear to me that yeah, he was done. And he’s not a young man, and so they’d been standing there for a while. So it was a little bit too of: he’s going to be ready to sit down. Plus he’s doing this emotional work. That’s not something you’re going to do for an hour. So then when I tapered that time, it fit for him, and the wife was certainly okay with stepping back from that time. So it was clear, evident all around that that was a good amount. And it also gave the other kids a chance to come back.

In this story, the change for the patient and family is subtle, and the musicthanatologist includes everyone’s needs in his prescriptive process. As Pederson notes, his focus expanded to include the family members, rather than shifting from the patient to her family. Family members can also find that their focus and awareness expands in the music vigil. One administrator I spoke to works with music-thanatologists, and both of her parents received music vigils before they died. She stressed the difference the music made in the way her family behaved as they gathered at the bedside: “I come from a family of managers . . . so it’s not unusual for someone to be directing someone else. Or orchestrating . . . I think more importantly that there’s no need to be saying something. So that . . . was really sort of a pleasure in a way, to be sitting present with a family member without feeling that you have to say anything to them.” After being with their father in a music vigil, she and her siblings welcomed a music vigil for their mother. As they sat together, she noticed the way her siblings behaved toward their mother. And it was nice because my two oldest brothers were sitting on either side of her. Again, not their inclination to be contemplative. . . . I had one sibling that hadn’t been in town a lot. And this allowed them to sort of enter, without feeling like they had to [make conversation] . . . This is a gift in that it allows people to reflect on what’s really happening. Rather than the need for the social interaction.

Because the music was not familiar, she and her family could sit quietly together without expectations. The music vigil “doesn’t demand anything of you,” she observes. There’s no previous knowledge of the tune, there’s no . . . preconceived, nothing that you can say about that music in your head that would make you think about the music, and therefore it allows you to think about something else . . . It doesn’t

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evoke anything else, that if it was a known melody . . . even the instrument isn’t as well known. So I can’t bring anything, the music doesn’t make me go anywhere else than with myself . . . It’s sort of like the glue to the room, in a way.

For this administrator, the music-thanatology vigils offered her the opportunity to prepare for her parents’ deaths. Because if you keep doing and talking and focusing on other things than what’s actually happening, you somehow don’t embrace it in a way . . . I mean . . . one of the times I remember I had my 14-year-old daughter lying on the couch reading Harry Potter when the harps were playing . . . It helps it become normal . . . younger children, 10, 8, were there. And I think it helps them. Because otherwise you’re just sitting there without it. Again, it’s the glue. It’s sort of a cohesive factor. Which I think is healthy to have you really take a look at what’s going on . . . [O]therwise you get it at the end, and it’s done and you go, whoops.

While for some the music vigil is cohesive, in other cases it draws out different responses from different family members. One woman I spoke with works for a hospice. Her father’s music vigil was featured in a newspaper article, which she puts on the table between us as we talk. Some of her family members had reservations about the harp music, but they trusted her and agreed. She gazes at the newspaper photograph as she describes it to me. We sat as close to him as we could possibly get. We reached for him, and we were touching him . . . I had actually heard them play before but I had never been in this situation, even as a volunteer, where I was actually a part of a death vigil. And so for me I found myself sort of losing the people around me and getting into the space where I could really, really focus in on him. And I had actually been the one doing — I was the power of attorney — I had been doing most of the detail work. And doing most of the health care planning. There had been a lot to think about in addition to this. And so it was just a time for me to just watch him, stroke him, and really, really feel 100 percent focused. I liked the sound of the music; I think everyone did. It wasn’t a nursing home any more. It really was our space.

She did not pay attention to the photographer or the reporter during the music vigil. One family member became upset during the music vigil and chose to leave. She says she normally would “tend to have walked [the family member] into the hall and say, ‘Are you all right?’ ” or something like that. But I kissed her and let her leave. “I just remember wanting that time with him and not wanting it to be interrupted.” She continued to focus on her father and did something uncharacteristic, which was not to have a caretaker response toward her family member. Her father’s response to the music was not immediate, and he did not calm down or relax until well into the vigil. But after the music vigil, he

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became much more responsive. His daughter believes it was the result of the music. And as everyone cleared out of the room, my sister helped him sit up in bed and the aides came in and helped him sit up. And he popped awake. And he hadn’t been talking very much at all, during the day, or even the day before. And he sort of sat up in bed. He’s an extremely gregarious guy, very friendly, and he used to say, “I love you, I love you.” We used to call him “the Mayor” because he would walk down the hall and kind of salute. He was smiling. He was sitting up in bed, and he was recognizing us, and he was kissing us. I love you — not a lot of words. And then, after we left, the aides were starting to give him dinner. And he hadn’t really eaten [before then].

This woman and her sister were close to their father and had cared for him “almost as if we were taking care of our child.” She reflects on whether her family members would have enjoyed the vigil more if they had known more about music-thanatology. Calling it “a mixed experience,” she says, “My goal had been to be inclusive. And I was aware of this very wonderful thing that could be provided, and I thought it would be something that would make them feel so good.” She remains grateful for the music vigil and is honored that the musicthanatologists made themselves available to care for her father. It moves her to think about it, and she feels she will “remember that moment for all time.” She says that having music-thanatology was “more than I hoped for.” She remembers “feeling so connected to him.” PATIENTS DESCRIBE THE MUSIC VIGIL In rare instances, the patients themselves describe the effects of the music. Annie Burgard is a music-thanatologist for Palmetto Health Hospitals in Columbia, South Carolina.2 In a previous position, she and another music-thanatologist attended a series of music vigils over several days. There was a little boy and he was only 4 years old, and he could only use one part of one of his lungs. He had some kind of cancer and he was dying. And he was such a special little guy, and we did a series of four vigils in two days, one at night and one in the morning. After we went the first evening and played for him, he wet his bed that night. Which is the first time that he had wet his bed in a long time. His mother said that he only used to wet his bed when he would get highly sedated for surgery. He usually would take 12 boluses of morphine a night, and that night he only took 4. And in the morning, he said, “Mommy, I think the music took my pain away.” He used to call the music “heart music.”

Ann Dowdy is a music-thanatologist for Applegate HomeCare and Hospice in Salt Lake City, Utah.3 A patient and her husband sat on the couch looking

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at photographs during a music vigil that Dowdy provided in their home. The following week, they called and asked her to return. Dowdy made a suggestion to her during the second music vigil. And this time I said to her, “You know what would be helpful? If you closed your eyes. Let’s see what happens. Let’s do an experiment.” And so I did that. And when I was getting ready to leave, I asked her how it was, and she said, “Wow! Motion pictures!” And the next time I saw her . . . she was really sick. And so I played for her one more time. And I asked her how it was for her, and she said, “I had the most amazing experience. I was at this place, and you were across a kind of divide between the two, like a culvert. You were sitting over on the side, playing harp on the grass.” And she said, “I felt so wonderful. I have never felt so wonderful in my whole life [than] in this place.”

The woman’s feedback was meaningful for Dowdy. And that was the first time I had ever had feedback like that, ever. Most people aren’t conscious. That little lady died 32 hours later. I knew that she was seeing herself on the other side and she just loved it, and it was really neat. It was a gift to me to be able to say that to me about this is where she was. . . . Those are the reasons that one keeps going.

Some patients offer a spiritual explanation of the music. Claudia Walker, a music-thanatologist at Providence Regional Medical Center Everett in Everett, Washington, once played a brief music vigil for a woman in her forties.4 The woman responded immediately. And after a couple of minutes she said, she looked right at me and said, “I get it . . . God’s right here, right?” I mean, she just went immediately to that place of: I’m not alone. I’m not alone. God’s here. And that’s all she needed.

Walker replied, “Oh, yes. I think so too.” The insight was so profound that the woman was content with only that short period of music, and Walker ended the vigil. MUSIC AND LEARNING TO LET GO Much of the dying process has to do with letting go, an ongoing process that happens on multiple levels. Music can help alleviate the suffering of letting go, even when harp music does not appear to be something an individual patient would appreciate or enjoy. Donald is forthright about the type of man his father was, and how unlikely he was to enjoy music-thanatology: “This is what I said in my eulogy — he spent his entire life fighting through things, being loud. And in this final

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moment, it was hard not to be awed by the measure of peace that was granted to him. And I have to credit the music-thanatology program for that.” His father’s cancer was discovered too late to be treated, and he had a rapid decline. I should give you a little bit of background also, on who my father is and how this happened. He was a workman all his life, a Marine veteran, a person who was known to everyone who knew him and a lot of people who didn’t know him as an especially powerful, and an especially brusque man, who didn’t have a lot of time or patience anywhere in his life for the gentler touches, or for any spiritual dimension to his life . . . He was dying of cancer. His cancer had wasted him away from a very powerful 240 pounds to something like 96 pounds by the time he died. So for him, dying was a very traumatic experience, I could tell.

Donald watched his father lose many of the things that had given him the most pleasure in life. A former Marine, his father was “a good solider.” He saw his disease process as orders, and he was willing to obey them. He struggled with his losses as he drew closer to death, and Donald could see “how much he was suffering in this situation where he couldn’t do any of the things that for him made life worth living.” He very much enjoyed wrestling with large engines of various types. He enjoyed eating a great deal. He enjoyed sex a great deal. He enjoyed drinking. All these pleasures of the flesh which were proof of his vitality were all things that he could not do any more. And he felt terrible. And so that’s why his passing was a blessing to him. And that’s why I was so relieved to find that in the last few moments of his life he did in fact find a bit of comfort and release through the music-thanatology program.

In the final weeks, Donald’s father tried to ask for the type of support he needed, but he could not find the words. Donald knows what his father was looking for: a male doctor in a white lab coat with a stethoscope who could tell him what to do in his final days: “Someone who was clearly an authority figure. Because my father was trying to surrender. And he needed an authority figure to surrender to.” I know that the closest he ever came to it was about two weeks before his death. He could not even hold his head erect any more, and he asked me, he told me he would like to talk to some special kind of doctor. That’s as close as he could come to articulate what he was obviously trying to say, which was “I feel really scared about this. I accept it but I feel scared of it and I wish that someone who is knowledgeable about this would talk to me about it.” And I tried. I tried to connect him to some kind of resource. But the problem with the medical profession . . . is that it’s all structured to help people fight off death.

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One day, Donald came to visit his father and found a music vigil going on. The music-thanatologist was gently holding his father, humming to him. Donald was surprised to see his father being cared for in this way. The music-thanatologist continued to make visits to Donald’s father and provided a music vigil on the day that he died. Donald, his sister, and his father’s best friend were present at his father’s death. But the time we got the call, he had gone beyond speech. You don’t know the extent to which someone is able to understand what you’re saying when they’re in their final few hours. You don’t know if they’re capable of speech, if they’re capable of hearing. So the only way you have to get through to people is touch. And that’s what we did. I held my hand on his brow, and I held my other hand on his hand. My sister was on the other side and she was holding his other hand. And his best friend . . . was there as well. It was a really awesome moment, a sacred moment. Because I could feel the sort of slight, subcutaneous trembling or vibration that I felt underneath his skin sort of cease. And so I signaled to the other people there, and they brought one of the professionals, and they verified that that was his moment of passing.

As patients prepare to let go of the lives they know, family members must let go as well. Music vigils frequently provide a space for families to reflect and reimagine their future, particularly as they confront separation and loss. Anna Fiasca is a music-thanatologist at the Mid-Columbia Medical Center in The Dalles, Oregon.5 She shares the story of a couple learning to let go of their plans for the future. This was an elderly couple. They had known each other in high school . . . Their paths crossed again and they ended up marrying. They were this couple who were so in love with each other. They had big dreams for their retirement. About two years into their marriage, he was diagnosed with lung cancer. Their first thought was that he would beat it, and at first he responded well. He did okay for a while. About nine months after that he was back again, and the cancer had resurfaced and spread. And then it started to be a whole different picture. So this was a couple who really struggled with his dying. And it was poignant how they struggled so hard to come to terms with what was happening to him. And at a certain point, he realized that he was dying but he couldn’t really say anything to her about it. She kept insisting that he fight until the end. And by this time, I was consistently providing vigils, and he was in and out of the hospital. And his wife, she would get impatient with him when he would get tired and want to give up. And she would kind of get mad, and tell him he had to keep fighting. So there was a real struggle going on.

The patient’s disease progressed, and he was eventually admitted to a nursing facility. His wife called about a week later to ask Fiasca to come immediately.

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When she arrived, the patient was actively dying, and his wife was leaning over his bed, speaking to him. Fiasca quickly realized that the wife was asking her husband to wait for his son to arrive, who was coming from a short distance away. And so I . . . went right to the harp and started offering music to . . . cradle them both. Music that was comforting, and to help his wife begin to maybe relax a little bit and begin to open up to a little bit of trust. Now this vigil was a little unusual for me because there was a second person involved who arrived maybe 10 minutes into the vigil, the woman I work with, with guided imagery. And she had also been working with this man and his wife, very, very closely, and they had wanted her to come too. And she didn’t do her guided imagery because that wasn’t the venue for it, but she was . . . there as a supportive presence. And so she . . . stood on the opposite side of the bed from his wife, and every once in a while said this quiet, gentle thing. Like, “Okay, you can just trust that he’s on his own timetable. He isn’t in this world any more, on the timetable of this world. You can just trust that his timing is perfect for him.” Every once in a while she would say something like that. I continued to support with music. And then I moved away from metered music into unmetered music as a way of . . . starting to open up and support him, because he was obviously in a place of unbinding. And his wife then also began to kind of quiet down, and she leaned in very close to him, and she finally said to him, “I love you so much. You’ve been such a good husband. Thank you for everything that you’ve been for me. If you need to go, you can go.” And within moments, he took his final breath. And then we . . . sat quietly with both of them. And then not too long after that his son arrived. And when his son realized that his father had died before he arrived, there was a moment of real angst for him. I moved out of the way and let him move close to his father. From a distance I offered the one last thing that I offered which was the Kyrie from the Mass of the Angels. And in that final space of music, his son settled right in and his wife settled right in and they were there with him. Talking about their fond memories and what a blessing it had been to be with him. After about another 10 minutes, it was really clear that they had found the peace that they needed, and that they would be okay, so at that point I left. It was a really beautiful final vigil that ended up being a time of release for everyone.

Admitting that a patient is dying can be extremely painful, and family members must let go of not only each other, but also of their hopes for a cure. Fiasca shared a second story about a couple who was deeply committed to their hope for healing. Faced with the dying process, they were forced to surrender that hope and accept a new vision for their future. This was a couple who were very active in a very fundamentalist church in the area. They lived in a little town quite a ways away from the hospital. Sometimes I would visit them in their home [or the] hospital. She was in the nursing home near the end. Her husband was in total denial about what was going on. This

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was a younger couple, she was in her late fifties, and he was a little older, I think in his early seventies. He would not discuss anything having to do with preparation for her dying because he was determined that the Lord would heal her. It was a very powerful religious belief that healing was possible and of course it would happen. And so . . . as his wife deteriorated, it became very difficult when there were issues that needed to be discussed and he would not discuss them. And while she shared his convictions, there was a point which she reached, which is pretty common for people who are dying, to reach that point where they know that that’s really what’s happening. And they begin to come to terms with it themselves. But for her there was no way for her to talk about it with her husband — to say the things she wanted to say to him, to acknowledge and thank him. She couldn’t ask him to make arrangements for her. They couldn’t have those conversations. When I would play for her he would go, leave the room. He avoided the music. On this particular vigil she was back in the hospital again. She had had a pretty big setback. He was sitting by her bedside and the nurse had just given them the menu for dinner and he had it in his hand. His wife was really grateful that I had come. The music really always helped her relax and helped reduce her pain. And so I began the vigil, and her husband did not leave. He stayed in his chair and held on to the menu, studying the menu. And then after about 15 minutes or so, he had tears in his eyes. And he put the menu down and he sat there and he wept. And I kept playing and he kept weeping. His wife had fallen asleep and so I continued with the music. And when it felt like the vigil was complete I stopped. And then he looked up at me, and his wife was still sleeping and he said, “This is so hard.” And he was breaking down and crying and then he said, “I know now that I won’t be able to take her home again.” He kept insisting that he could take care of her at home, and he wouldn’t let her be taken to another facility, and that was part of the reason that she had this setback, because she had fallen at home. And nobody could talk to him about it. At this point after the vigil, he said, “I realize that I really can’t take care of her any more. I have to let her go into a care facility.” And then he said, “You know what’s happening, don’t you?” And I said, “What’s happening?” And he said, “She’s going home.” And I knew he didn’t mean home in their little house. And then he broke down and cried. From that point on, right before he left his wife woke up and she kind of noticed that he was crying. He kind of tried to put a good face on again. I brought him a warm wash cloth, and he washed his face. But it was really obvious to her that he had had an emotional response. And he had been softened and opened and they had those conversations that they hadn’t been able to have, right after the vigil. And from that point on things had really shifted in their capacity to communicate with each other about what was going on. And it wasn’t all easy from then on, but it was a real turning point.

For other family members, the need to let go comes long before they are prepared. Deborah was very familiar with music-thanatology, but her mother’s

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illness progressed quickly, and she was not sure her mother would be able to have a music vigil. She watched as her mother struggled to let go and wondered what she could do to help her accept her death. Deborah first learned about music-thanatology at work. She hoped that her parents, who lived nearby, would be able to experience this service at the end of their lives. When her father became ill suddenly, she encouraged him to consider a music vigil. He declined, saying he did not want to be “harped to death.” Deborah did not insist: “I got to laugh and I told him, ‘If you met them you wouldn’t feel that way,’ but I respected his feelings.” Deborah’s mother was a pianist and organist, and music was the biggest source of joy in her life. When I met Deborah, her mother had died only eight weeks before. Deborah had been involved in her daily care. After her father’s death, Deborah moved her mother into the house across the street until she required full-time, residential care. One day, she received a phone call from the facility where her mother lived. So we got a call that her ankles were swelling and we needed to take her to a regular doctor’s visit. Well, we went and got her and she was just in terrible condition and so we called an ambulance. And so it all happened so fast in one way that I really didn’t have a chance to think.

Deborah wanted to take her mother to the hospital where she works, but another hospital was much closer. When they arrived, Deborah was told that her mother’s kidneys were failing. She then had in a long conversation about whether to pursue aggressive treatment, weighing the benefits against the impact on her mother’s quality of life. We came to the conclusion that we know that Mom’s not the kind of person that would want to be on a lot of machines, or any of that, and so, [we] decided on comfort care. And so I spent I guess it was seven or eight days next to her bed on the windowsill, day and night. I just slept on the windowsill and stayed with her, and she seemed very peaceful, and she was able to talk a little bit but . . . she said she was never in a lot of pain but she had this feeling . . . like she liked living and she didn’t want to die. She just didn’t want to die. And she told me that.

This made Deborah “feel horrible.” Her mother was 90, and her liver and kidneys were failing. She felt as if her mother were “holding on.” The doctors told Deborah that her mother would likely only survive a day or two, but her mother continued to live. Deborah was informed that Medicare would no longer pay for comfort care and that her mother would need to return to the residential facility. She was taken there by ambulance, and Deborah could see that she seemed happy to be back among her familiar things. The next morning, Deborah met with a hospice representative.

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That morning hospice came and they signed us up and they asked me, “Have you heard about our music-thanatology?” And I just started to cry. I just said, “If Jane could come, it would mean the world to me.” And do you know that it wasn’t but a couple of hours later that— on her lunch break — here comes Jane and her harp. And Mom had been having the noisy breathing and the whole thing and she was still just holding on, and the fever was going higher. And do you know that when Jane started to play Mom instantly relaxed? I think she played for about an hour. The sun came out, and it was shining through the window into her room. And so we opened the window. The wind chimes were playing in the background and I cried for the first time in that eight days. Cause . . . you just kind of go into an auto-pilot mode in this kind of a situation where you just have to be in the now and you can’t just completely lose it. But I was able to cry in a really wonderful way, with Jane. And Jane was crying. And it was just so beautiful because Mom was . . . so peaceful. I believe that’s when she let go. That was at noon and Mom was gone by four in the afternoon. And when she passed it was so quiet — I was in the room — that I’m not exactly sure when the exact moment was.

Deborah could see that the music brought her mother from a state of anxiety as she struggled to breathe and hold on to “the state of relaxation and acceptance,” which allowed her mother to let go. Deborah believes that the events that led up her mother’s death had a purpose. And so, being a spiritual person I can look back . . . on it and I can say to myself that things always seem to happen for a purpose and we don’t know when we’re in it what it is. But I think it was meant that she was to be there, and that Jane was to be there, and that that’s how it was supposed to unfold. And that’s why they kicked her out of the hospital. So I can accept it all much better now. But if it hadn’t been for Jane and her coming it would have been a whole different experience. She just helped me as much as she helped Mom. Because of being able to release that resistance or bring the acceptance. There’s just something about sound and music that runs so deep, on a soul level. And Jane is so good at what she does because she is a truly loving and compassionate person. And you just feel it, it just flows through her. And so I’ll always be grateful because it made the difference between a very, very sad death to sad but meaningful, because it was so peaceful.

TENSION AND PAIN IN THE MUSIC VIGIL Although the music can help support many painful emotions and physical symptoms, the dying process can still be a challenging time for patients and families. In some music vigils, the suffering is simply overwhelming. When this is the case, music-thanatologists can work with other members of the interdisciplinary team, such as chaplains and social workers, to offer the patient

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and family additional support. At other times, this suffering is transformed during the music vigil. Kay Adams, a clinical social worker, describes herself as the “biggest fan” and devoted referral source for music-thanatology at The Denver Hospice; she has accompanied her patients in multiple music vigils alongside Gloria Viglione, the resident music-thanatologist.6 In two separate conversations, Adams and Viglione share the story of a grief-stricken son who participated in music vigils for both his mother and his father. Viglione describes the first referral she received for this family. I received a referral from Kay Adams, clinical social worker, to attend an elderly woman who was transitioning. Within a couple of hours I was at her home for what would be an evening music vigil, in which Kay and 8 –10 family members were present. The son, as Kay described to me in her referral, was nearly overcome with grief. He wept freely, sobbing loudly at times above the musical offerings. The music vigil held a container for all the expressions around the room including some playful recollections by others, as well as the quiet presence of her husband, a white-haired gentleman in the corner rocking chair. The patient’s visible solace in relation to the prescriptive musical offerings was a unifying agent for all present.7

About a year later, Viglione received a second referral from Adams, this time to attend the husband, who was now in a nursing facility. Viglione recalls that “he had become quite beloved by fellow residents and staff alike in a matter of months. Kay relayed that the patient’s son, as before, was suffering tremendous grief; the son and his wife had requested the vigil for his father.” Viglione, Adams, and the family gathered at the bedside. Unfortunately, Adams was called away before the start of the vigil. Viglione describes this remarkable music vigil. What followed was one of the most poignant music vigil experiences in my 17 years of doing this work, as I, along with family, the facility administrator and various staff who circulated in and out, witnessed a very concentrated sequence of visible changes in this gentleman, from his initially rapid, agonal breathing, to his last breath and beyond. Subtle qualities of time and space were altered, as the music deliveries moved in tandem with his unbinding. I recall a strong sense of his particular labor as an adventure, a kind of shedding process, and how musical midwifery served the moment so naturally. By mid-vigil, I had told the son and daughter-in-law, “Do you see, your father’s breathing was 40 breaths per minute and now it is 20 breaths per minute?” Then, later, “14 breaths per minute,” and still later “10 breaths per minute,” sure to include them consciously in the momentum that was occurring. There were times of leaning inwards towards him, as family spoke quiet words of assurance and love; at other times there was something in his being that seemed to be expanding and our circle seemed to lean slightly outward, allowing those present to witness more from the periphery.

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Like a gentle unwinding, his breaths grew more and more calm, slow, quiet— until, during a delivery of Silent Night with harp and lulling pianissimo vocal accompaniment, he took in one last breath before two or three out-breaths, spaced wide enough apart to create some surprise for us all. A very gentle countenance remained on his face. More than that was a change in his eyes. When I had entered two hours earlier, I made definite notice of his open steel-blue eyes, both irises very cloudy in appearance. In the moments following his passing, his eyes became completely clear, and we all noted it with some remarks. In those moments of his passing, there was a quiet catharsis, a feeling of release that moved through as tangibly as I have ever felt, bringing tears of elation, awe-inspired silence and small bursts of laughter from us all, including his son.

When Adams called the family to offer them support after the funeral services, they expressed their gratitude for the music vigil. She recalls, “The family, when I did my bereavement call just said, ‘You know, I never knew death could be beautiful until now.’ ”8 In other families, personal differences contribute to an initial feeling of tension. Nancy Romanchek, a hospice nurse for Midwest Palliative and Hospice CareCenter, remembered a family with religious differences.9 They accepted her offer of a music vigil, and music-thanatologist Margaret Pasquesi said she could be there in about an hour. Romanchek suggested that the family leave the room for a short time to get something to eat. While the family was gone, she waited at the bedside with a nursing aide and a caregiver. Romanchek could see that the patient was actively dying:. “And I remember saying to the patient, ‘Could you just wait? Could you just wait until they come back?’ And [dying patients] do! I don’t know how they do it, but it happens all the time. And so he did wait.” Finally, the music-thanatologist arrived. And when Margaret came . . . her presence alone is something that is therapeutic. Because the way she speaks, she speaks in a quiet voice and she has a certain presence. She touches hands with everyone. She explains and really brings the whole apprehension down. She really kind of grounds the people, says what she’s going to do so there’s no surprises. And there’s always someone that wants to stand, and I always bring a chair because I know once the music starts they’re going to get really relaxed. And so . . . when that family was gone to lunch we set up the room and . . . made the lighting . . . low. So they came in and sat down and Margaret started playing. And the family invited us to stay because the nursing assistant was new and the caregiver had become very close. So it was about six of us in the room. And she played and it was so beautiful and you could feel the energy in the room shift. And the moment that she stopped playing, you could feel that difference in the room.

Romanchek asked the staff to leave the room with her in order to give the family a moment of privacy. Romanchek stepped back into the room to tell

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the family where she would be if they needed anything. As soon as Pasquesi stopped playing, the patient died. Even though knowing he was imminent, he was ready, it was like he loved that music, that music just brought him to a place that he was able to just let go. And of course then we were all crying. But it was so beautiful . . . Had that piece not been there, would he have died peacefully? Well, probably so. But it would have been a totally different experience. That family will remember that as a beautiful, peaceful death forever.

Sometimes music vigils can be challenging to the music-thanatologist as well as the patient and family. One music-thanatologist mentioned that after attending patients at the bedside thousands of times, the individual music vigils have begun to blur. She now remembers the difficult music vigils the most vividly and provided an example. A half hour into one music vigil, an elderly woman with two adult children at her bedside began to bleed out of her mouth. The nurses cleaned and changed the patient, but the musicthanatologist was aware that the bleeding would continue. The patient’s children were shocked by what they had seen but didn’t want to leave. Now they are on either side of this, looking at each other and looking at Mom. And they’re tense, starting to calm down a little when the red frothy foam starts to come out of her mouth. While they’ve suctioned her, it’s still going to keep happening. They panic and then out of somewhere — and I’ll say this is grace — the son walks around her to the side of the bed that the sister’s on. He reaches around her, he grabs the suction machine. He figures out in a moment how to turn it on and he suctions his mother. And he says, “We can do this.” We were all in tears. And I kept playing. And I could tell she was dying. And at some point I just knew . . . something needed to change, and I ended the vigil, and we hugged. And I sat down in the chair by the nurse’s station and about 20 seconds later they came out and said, “She’s gone.” So it was really hard, and it really stuck with me.

Some music vigils that are at first overwhelming can lead to peace and transformation. Andrea Partenheimer is a music-thanatologist at Providence Portland Medical Center in Portland, Oregon.10 During a recent music vigil in her previous position in Olympia, Washington, she found herself in a very difficult patient visit. She arrived at a hospice patient’s home and found the woman in pain, very nauseous and vomiting uncontrollably. Partenheimer walked into a situation where there was much more suffering than she had expected. I went into her bedroom to meet her and found myself holding a basin under her head while she threw up. Her body would give her a brief respite, then she would retch again. This happened over and over. When she looked in my eyes it

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was like she was just completely stripped, completely raw. I had never seen eyes like hers before. There was depth there, suffering, and absolutely no defenses or protection. It was intense, very real, and very challenging — and demanded more of me than what I was prepared to offer at the time.

Partenheimer says she felt like she “had this choice.” It was very hard for her to be with this woman, and the woman was aware of it as well. She looked into Partenheimer’s eyes, and Partenheimer felt as if the woman were asking, “Are you OK to stay?” She recalls, “It felt like my choice was simple: to graciously leave her, or to somehow dig deeper in myself and meet her where she was meeting me.” Partenheimer made the choice to stay and serve this woman any way she could. In the presence of the suffering she was encountering, Partenheimer also had to be willing to be vulnerable, to “strip away.” When she asked the woman about music, the woman replied, “Yeah, that might be good.” And I ended up staying with her for quite a while. At first, she was restless and repositioned herself a lot, then gradually she became more quiet and settled. She kept her eyes closed the whole time and stayed very internal. I found myself working hard to create a sensitive environment for her, then trying to let go of the working so the music could just emerge. It felt like she was in such an incredibly fragile place and the music was creating a fine gossamer film around her. The music was very stripped down and delicate — smooth melodies, very little texture, then spacious periods of silence. About an hour later, she appeared to be sleeping lightly. After sitting quietly with her for a while, it felt time to slip away. I tiptoed out of her room with the chair and came back for the harp. She opened her eyes and said “beautiful . . . helpful . . . ” It was powerful, and so humbling to know that the music had been beneficial for her on such a difficult day. She was an unusual patient for me — although we serve a lot of vulnerable patients, she was like the vulnerable of the vulnerable. She was so raw, and she let me be with her in that . . . What a privilege. I don’t think it’s possible to truly convey this experience, but it was beautiful in a really hard way.

STAFF MEMBERS DESCRIBE THE PERSONAL IMPACT OF MUSIC Staff members who work with music-thanatologists shared stories of their own profound experiences with the music. These experiences help them cope with the suffering they witness, manage the stress of their work day, connect with their colleagues, and even manage their own physical ailments. Social worker Malin Maleegrai works on a hospice inpatient unit at Midwest Palliative and Hospice CareCenter.11 In a previous position in this hospice, she worked on a team in the field, traveling to patients in their homes, hospital rooms, or nursing homes. She and music-thanatologist

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Tony Pederson were both present at two music vigils during which patients died. She described one of them. When I was out in the field, I shared a music vigil with Tony. It was a patient of mine who was in a nursing home. And she was imminent and dying and she didn’t have any family members at the bedside. And Tony started playing for her and you could just see a shift in her. [It was an example of a time] when someone just sinks into their bed, and the breathing becomes a little bit easier and I was holding her hand on one side of the bed, and Tony was playing on the other. And I just remember she took her last breath, and it was just this wonderful sigh. And then she passed. And it was so powerful, to be able to share that moment, not only with the patient, but also with Tony. Because she was a nursing home patient and she didn’t have any family there at that time, it seemed to me like such a beautiful way for her last moments—to have the music and to have people with her. And although she might not realize at that time who we were, but knew there was a presence and this beautiful music too, to send her off to wherever she was going.

Maleegrai finds that being with someone who is dying is “powerful and meaningful to you as an individual,” but she believes it is also personally meaningful to share the experience with a colleague, particularly one who is doing something beautiful for the patient. She knows that people who do not work for hospice may think this experience would be frightening. Instead, she says that “there’s such a peace about it that I can’t even sometimes put into words or explain to others who don’t work in hospice.” When I ask Maleegrai if there is anything that surprises her about musicthanatology, she shares that she is surprised by the emotions it brings up for her. I don’t know why it surprises me, but it does, that it hits me in my core. But always in a different way, depending on where I’m at that day, who the patient is . . . what’s going on in that space, the energy that’s in the room at that time. That’s probably the most surprising thing, for me. . . . I expect it to have an effect on patients and families. You know, that I expect. And then I hear them play, and I’m in vigils and you think that you’ll get used to it, and I haven’t.

Maleegrai is not the only staff member to be surprised by her emotional response to music vigils. Bonnie Roter, a nurse at Midwest CareCenter, shared her own surprise at her reaction to a music vigil.12 She describes the first music vigil she attended as “incredible.” I just sat in the room, and I just wept . . . I was so surprised by my own reaction. He was completely comatose and I just sat there and tears were just welling. It was just so beautiful. Sort of watching . . . Tony work with this gentleman, and checking the pulse, and watching the breathing, and playing to that. It was

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an amazing experience to be in on that. This was a man who was all alone. He had a public guardian. He was dying alone besides me as the witness and then Tony coming in. He was very comfortable when Tony came in and provided this, and it was very moving. After I cried I fell asleep. I felt incredibly drained, and when I woke up Tony was gone, the patient was still with us but he died shortly thereafter very, very comfortably. I just felt like, that’s how I want to go. When it comes to my time, it’s just my plan.

Some staff members offer more spiritual reflections about music vigils. Ginny Swenson is a social worker at The Denver Hospice who believes that music-thanatology has had a deep effect on her work in hospice.13 She once attended a music vigil with music-thanatologist Gloria Viglione for a young man who was difficult to care for. One of the vigils I attended was for a young man, probably only in his forties. He was homeless and was brought to our inpatient care center because he was within a few days of dying. He really did not have any friends or family, no real connections. He was experiencing some agitation. He was no longer verbal, and I wanted to be there for him and I wanted to be present for the music thanatologist . . . It was so hard for any of the staff to care for him. I think the vigil, or the series of vigils, was able to take away some of his agitation. I think it was just amazing and was powerful by touching on the mystery of death and dying. I don’t know how to describe it other than it just kind of softened him. Instead of desperately holding on, holding on with gripping agitation, it just kind of softened him. And I know after the last vigil, he passed within an hour.

Swenson believes particular elements of the music facilitate this softening: “I actually feel as if music and [the] vibration of music, I think that it just kind of touches the core of us.” She feels as if the rhythm in particular “soothes the heart and spirit” and provides a “deep softening, and deep relaxation that occurs.” This deep relaxation has also affected Swenson. When she sits in a music vigil, it has broken down walls that are created by the professional role she plays. For anyone who works in end-of-life care, it is important to be present. Music-thanatology helps her with what she calls her “practice of being compassionately present.” Some of the interviews with staff members took an unexpected turn. As other stories have indicated, when an institution has made a commitment to provide music-thanatology to their patients, occasionally their staff members have an opportunity to experience music for their own pain or health problems. While the staff member in this interview was not dying, the effect of the music on her was profound. Here the focus of the music vigil was pain relief, rather than end-of-life care. It points to flexibility in the role that music-thanatologists play at the institutions where they work. One of the hospice chaplains I spoke to has severe migraine headaches and once had a frightening episode with neurological symptoms. In additional to

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hallucinations, she could not remember the previous week or her children’s names. Her symptoms became so severe that she was hospitalized. She was having tremendous anxiety when the music-thanatologist arrived to play for her. It was a really frightening time. And [the music-thanatologist] came and played, and it was just so soothing. It was just . . . I could connect with her, when I hadn’t been able to connect with anything in over a week.

The music transformed her anxiety. My fear went away. And I think that was really the turnaround point in the healing process. Letting myself finally — you know you’re so wound up, you’re so tight, you want to be in control. And . . . you’re [going to] fight this thing. When [she] came and played I was finally able to just relax and let it be. Let the meds work. And I really do think that was kind of the turning point.

She gave herself permission to be vulnerable, in the same way her hospice patients are vulnerable. She thought to herself, “You know what this can do, so let it do it. Allow yourself to be in the same position that I tell our patients and loved ones to be. You know, be open to it.” She believes it was the “first time I allowed myself to be open to anything, because I was so wound up.” The music continues to help her with her migraine pain, and she sometimes attends music vigils for her patients: “I mean, they’re better than any medicine for my migraine.” While the music doesn’t take the headache away, it allows her “to go to another place.” She uses biofeedback in the music vigil to help manage the migraine. Nothing takes it away. But it certainly brings it down . . . There’s a difference between the headaches that you have every day, and the headaches that are really severe and lead into neurological, scary places. I think sometimes if I’m headed in that direction, it can stop me, and sort of turn me back around.

Another unusual set of stories came from a staff member who had experienced music vigils from three different perspectives: as a nurse, as a patient, and as a family member. Leah Trank, a nurse at Sacred Heart Medical Center in Eugene, Oregon, first learned about hospice when her father-in-law died.14 Inspired by the care he received, she wanted to become a hospice nurse but has since fallen in love with nursing in an acute care setting. In a coincidence she calls “full cycle,” this decision allowed her the opportunity to care for her father-in-law’s hospice nurse. Trank relies on the music-thanatology practice at Sacred Heart Medical Center, which is called Strings of Compassion.

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I know on days when I’m really stressed out . . . if I’m sitting outside a room where Strings is playing, if I’m sitting out there charting or whatever, I can feel my shoulders come down from my ears into a more relaxed position. On days when our harpists have an opportunity, they’ll come up here . . . and play for staff. And again, it has the same effect on us as it does on the families. It brings our anxiety levels down. And my goal ultimately for my patients is comfort, particularly for end of life patients, and so when Strings is playing, it’s bringing them comfort. And that reaches my goal as a staff member.

Trank begins with her experience as a patient. I’ll start with my simplest experience. I had an appendectomy a few years ago, and the [music-thanatologist Gary Plouff ] came and played for me when I was coming out of the anesthesia. It was really cool. One of the care managers told him I was on the surgical unit and he came and played. And I woke up to his playing. And it was just wonderful. It was absolutely wonderful.

I asked her if there was any confusion or disorientation when she awoke to harp music. Not for me. It was a nice way to wake up. It was just beautiful. And I woke up, saw him sitting there, and he smiled and told me why he was there, and I said, “Super. I’m going back to sleep.” It was so relaxing, oh my God, it made such a nice difference.

Trank’s family member also received a music vigil. [She was] an adorable, adorable little 93-year-old sparkle . . . She had had another fall and she broke her arm in two places. She broke her pelvis. And she told them she didn’t want anything done. She was done. She was tired. She couldn’t see any more. She was just tired. So one rainy afternoon . . . [music-thanatologist Sr. Vivian Ripp] came to play. And [my family member] was just this teensy, tinsy little thing with snow white hair and the room was kind of dark because it was cloudy and rainy outside. As Sr. Vivian started to play, you could see [her] whole face sort of relax, and as the music would rise, so would her eyebrows, then they would drop back down, and then they would rise up again. And as the music kind of built up to this level . . . I was really enjoying it. The sun broke through the clouds — this was so cool — the sun broke through the clouds, came through that window and her hair lit up, and was glowing. It was absolutely beautiful. I loved that moment. It was so wonderful.

Finally, Trank shares a story of an unconscious patient on comfort care who received a series of music vigils. She calls it her “favorite, favorite story.” One day, while his family was visiting, he became more alert.

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We had this gentleman. He had been in his life a fireman. And he’d been on comfort care, and in our comfort care room. And he’d been there about 10 days, and he’d been unconscious the whole time . . . Strings had been in there every single day playing for him. And the family was loving it. They enjoyed having [Strings] come. And he rallied one day. And was alert and oriented and was talking to the family. They had a great day. It was one of the days I call a “gift.” Strings was coming in to play, and they said, “Oh Dad, Strings is coming to play. You’re going to love them.” And he said, “Oh, I know. I’ve heard them.” Removes all doubt. I know that people hear what’s going on around them when they’re unconscious. Because he knew he had heard them before. He knew what it was.

SURPRISED BY THE MUSIC VIGIL Ultimately, it is impossible to know what will unfold in a music vigil. Two music-thanatologists shared stories of attending music vigils in which the end was a dramatic change from the beginning. What they expected when they walked into the room was completely transformed by the end of the music vigil. Christine Jones, a music-thanatologist for Applegate HomeCare and Hospice in Ogden, Utah, once watched as a family who had been struggling began to relax and take comfort in the music vigil.15 The patient was actively dying, and one of Jones’s coworkers was a friend of the family and attended the music vigil. Jones says, “I was given a lot of instruction beforehand. I was told they may throw you out 10 minutes after you come, because they think this is ‘foof music,’ but we’re going to give it a try because things are so tense, and they’re so upset, and things are so chaotic, that we’re willing to try anything.” I addressed the wife, and I said something to her that I don’t normally say. I said, “You know what? I’m just going to ask you to give me 20 minutes. Give me 20 minutes, that’s all I ask. Give me 20 minutes, and I’ll check in with you, and if it’s not your cup of tea you just give me the high sign and I’m out the door.” And she said, “OK, that sounds good to me.” Well, all of the men in this family, they all high-tailed into the kitchen. I began to play prescriptively, and everyone was behind me, and I couldn’t really see too much what was happening behind me. But all I know is that in about 15 minutes, the wife came over and proceeded to lie down on the bed with her husband. And the dog came, and got in between the wife and the husband. I saw everything shift in the room, and then little by little the big burly guys began to come in and sit on the sofa. And they began to tear up and process their own grieving. At the end of 20 minutes I looked over at the bed, and I saw the wife look at me, and then look down and look at her husband, and there was no need, really. She gave me every indication that I didn’t really need to check in with her.

Jones has reflected on this music vigil and what it means within the larger context of her music-thanatology practice.

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The vigil went on for about an hour. And everyone was comforted. Even the dog was comforted, and the husband’s heart rate slowed down, and the chaos, at least for that time, was not present. I really felt like I had done my job. And that was a really satisfying feeling. And again, every time something like this happens, I feel like we’re on the right track. Because I wasn’t going to be asked to leave, nobody was going to throw me out. But just the fact that this happened with this family tells me that this is the right thing to do. And that’s what sustains me. I’m serving well. And whatever happens I always say to myself, “I am preserving the integrity of the work. And I’m making my colleagues proud of me. And I’m proud of what we’re doing in the world.” This is what sustains me.

In other situations, the surprise comes from a family’s active participation in the music-making of the vigil. Music-thanatologist Jan arrived at a hospice patient’s home to find a large group of friends and family gathered outside, joking and talking together. She met the patient as soon as she walked into the front door. She’s alert and verbal, and actually she’s often cracking jokes with her three daughters. So they have this repartee going back and forth. And again, I’m thinking, “Hmmm . . . I wonder if I’ll be able to create the musical field here, and turn this small trailer into a sacred space.” Cause there’s a lot of joking, and laughter, and I’m going to have to penetrate that, as well. So anyway, there’s a bunch of people, 15 – 20 people . . . As soon as I started playing, I realized this noisy, kind of chaotic household full of people was instantly transformed. I hadn’t told them to turn cell phones off, but they had done so. There was this pervasive sense that everyone there was bringing this quiet and reverent attention to what was beginning to happen. I remember feeling really shocked. So this large family was gathered, and surrounded their mother, but again all these people were gathered, and they couldn’t all be close to the patient so some were relegated to sitting on the floor, or in the kitchen, scattered here and there. And so I continued playing, and there still was some dialogue here and there, taking the form of humor. And I just sensed that below this, there was grief, needing to be expressed. And so eventually I moved from bright hymns into darker material, more somber, more reflective, and it did encourage the family members present to move within a little more. And so sure enough, at times, then, the daughters were loudly sobbing, actually, and there was a great, heavy sadness that was being expressed, over their mother’s impending death. Then, by golly, the tears just as easily turned into laughter because the patient would crack one of her jokes. So this continued for most of the vigil.

As Jan prepared to end the music vigil, the family took over. When I was ready to stop, and the vigil was over, without any words whatsoever, the family spontaneously stood up, and formed a large circle that included me — I was part of the circle — and we all held hands, and prayed the Lord’s

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Prayer out loud. And other, shorter prayers were offered up. And one of the daughters began singing, “He’s Got the Whole World in His Hands.” And the patient loved this, and was beaming, and singing a little herself. And then subsequent verses included the naming of each of this woman’s children. So they name each grown child. And it was so clear to me that this family had so rallied with the music, and in their sense of telling their mother exactly what she needed. They continued to use music as a vehicle, but they were letting her know that each one of them would be just fine, and that it was okay for her to go. And it just felt like an incredibly remarkable vigil, because no one was more surprised than me about how it turned out, from my initial impression.

CONCLUSION In his book The Last Passage: Recovering a Death of Our Own, Donald Heinz discusses the centrality of storytelling at the end of life, as well as after death. The multidimensional purposes of these stories heal and contain grief, honor the one who has died, offer a reflection of the life that has been completed, and engage with a longing for resolution. This resolution may never be reached, even once the person has died and the story has been told. But this lack of resolution is one of the purposes of the story itself. According to Heinz, “The primary characteristic of a good story is its open-endedness. Individual readers or hearers can take it along with them, and the story continues to evolve beyond itself.”16 As many of the people I interviewed stated, each death is absolutely unique. This individuality is reflected in the story of their dying, which remains in motion even after it is told. Heinz contends that “the bequest of a good story is the ongoing process it sets in motion — stories never remain frozen. The story itself, especially its last chapter, is the record of the process of achieving a death of one’s own.”17 The stories in this chapter are not frozen. They are like a photograph of a river, in which we are invited to glimpse a moment of stillness, even though we know that a river is never still. The story moves like the river, changing and swirling as additional moments are recalled, repeated, and forgotten. Stories offer the wisdom of particular vantage points, and they do not attempt to say everything about the dying person, about music-thanatology, or about death itself. Instead, they invite us to glimpse a moment of stillness, where music meets love and attention, in order to create a unique story, a singular death. NOTES 1. 2. 3. 4. 5.

Interview with Margaret Pasquesi and Tony Pederson, May 28–29, 2008. Telephone interview with Annie Burgard, August 3, 2008. Telephone interview with Ann Dowdy, July 24, 2008. Interview with Claudia Walker, October 7, 2008. Telephone Interview with Anna Fiasca, July 2, 2008.

Stories from the Bedside

6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17.

Interview with Kay Adams, April 30, 2008. E-mail correspondence with Gloria Viglione, January 24, 2010. Interview with Kay Adams, April 30, 2008. Interview with Nancy Romanchek, May 28, 2008. Interview with Andrea Partenheimer, April 22, 2008. Interview with Malin Maleegrai, May 29, 2008. Interview with Bonnie Roter, May 29, 2008. Interview with Ginny Swenson, April 30, 2008. Interview with Leah Trank, April 28, 2008. Telephone interview with Christine Jones, August 4, 2008. Heinz, The Last Passage: Recovering a Death of Our Own (1999): 104. Ibid.

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CHAPTER 5

Z Prayers, Resumes, and Nightline: Music-Thanatologists Consider Vocation

Ultimately, music-thanatology is a vocation whose practitioners seek to understand not only the physiological complexities of disease processes, but also the spiritual significance of caring for the dying, and of dying itself. They seek to understand the significance of their own interiority, and of the role of presence at the bedside. —Therese Schroeder-Sheker A highly unusual and virtually unknown profession, music-thanatology requires its practitioners to occupy a role that is constantly being introduced and reintroduced to patients, families, colleagues, and new friends. As practitioners provide education, training, and service, they are regularly confronted with the question, How did you get involved in this? It is an important question. In almost every case, music-thanatologists have to make complex changes to their lives in order to attend the training, while simultaneously acknowledging that they might never find a job in their new field. Vocation is an important consideration in a context in which there are no guarantees of financial or professional reward. In fact, many musicthanatologists gave up secure and successful careers in order to pursue this new field. In all cases, the desire to work with the dying was stronger than the fear of change and sacrifice. What accounts for taking this high level of professional risk? I would suggest that in the absence of a guarantee of external rewards, the music-thanatologists instead experienced an inner satisfaction strong enough to mitigate the risks and carry them into this next part of their lives. The field itself defines this inner satisfaction as the pursuit of one’s vocation. Gregory Munro, former board member at the Chalice of Repose Project, could see this satisfaction in the students he met at the School of Music-Thanatology.1 Virtually every student, he said, “expressed to me the belief that they had a calling.”

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I would ask every student, “How did you come to this?” and it was amazing. They would open a magazine and see something about it and know immediately that they were supposed to do it and pick the phone up and call. Almost everybody had some story like that. There was a calling story. More than any other thing I’ve ever seen. I mean in any other profession you have people who are simply there because they couldn’t find anything else to do. But students here came from all over the world and they were called. It was crystal clear to me that they were.

From its inception, music-thanatology has been defined, in part, by the vocation or call of its practitioners. In a list of fundamental assumptions that create the field’s foundation, Therese Schroeder-Sheker includes vocation. This assumption “addresses the constant recognition that this work, no matter how skilled, is not merely a career. It is a service. This orientation requires clear intention and vocation, to be renewed with each deathbed vigil.”2 She defines music-thanatology as a “contemplative practice with clinical applications.”3 The music-thanatologist is a contemplative musician, grounded not in musical virtuosity but in the spiritual practice of caring for the dying. This idea of vocation is not unique among those who work with the dying as music-thanatologists; many who work in hospice or palliative care find tremendous meaning and a particular call to their work. But not many professions include vocation as a fundamental quality of the work itself. The reasons music-thanatologists enter the field can become a sustaining force in their practice. Many entered the field with a background in music but longed for a way to serve with music, rather than simply perform. Many entered with clinical training but felt dissatisfied with traditional forms of healing. Others had a spiritual focus and longed to integrate music and creativity into their ministry. Vocation comes from the Latin vocatio, which means “summons.” Vocatio comes from the word vocare, “to call,” from the Latin vox, “voice.” The idea of vocation is distinct from an individual’s career or profession, although it may include one’s daily work. It reflects a sense that the work itself provides satisfaction and meaning on an interior or spiritual level. It also implies that the practitioner feels some sense of the work being “right,” a good fit not only for their skills but also for their nature, personality, spirit, or soul. Schroeder-Sheker states that those who seek training in music-thanatology arrive with “a deep inner call, seeking to understand their longing as a desire for contemplative musicianship, and the blending of music, medicine and spirituality in the service profession of music-thanatology.”4 Schroeder-Sheker believes that music-thanatologists must engage their own inner life as they prepare to accompany the dying, although there are no specific religious or spiritual requirements to become a

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music-thanatologist. Music-thanatologists witness complex, grief-stricken, and sometime frightening scenes at the bedside. They must have a way to integrate their experiences without burning out. They draw upon inner resources in order to grapple with the questions of meaning and individual significance that arise at the end of life. And they must have individual and professional resources for support in order to keep providing excellent patient care. Practitioners accomplish this in a variety of ways, including religious or spiritual practice, music-making, and participation in regular clinical discussions with colleagues. One of the ways music-thanatologists explore their own interiority is to consider the path that led them to their work at the bedside, and to reflect on the ways in which their call has evolved over time. Of course, any time there is a call to a particular kind of work, there is someone who does the calling. What is the nature of the calling? Who or what is the voice? The music-thanatologists I spoke with rarely understood their vocation in the context of a particular religion or ritual practice. Instead, they described a more general spirituality, a powerful relationship with music, or an inner feeling of destiny or rightness that remains undefined. They were less concerned with the call’s source and did not always need to define it in order to experience it fully. The stories I heard from music-thanatologists about their vocation fell into several categories. The first were those who heard a sudden call in a single moment, which resulted in the immediate upheaval of their lives in the pursuit of the music-thanatology training. The second and larger category is made up of those who contemplated the idea of music-thanatology over a longer period of time, discerning their call in a reflective or spiritual way as they decided whether to attend the training. Some prayed about it; others asked for a sign or assurance that this was the right path to follow. Some were drawn to the work very naturally from another profession. Some found that their life circumstances prevented them from making an immediate change, and others were initially discouraged by their lack of musical experience. The third category is of those who do not necessarily believe that musicthanatology is a vocation. If they do use the term, it is loosely, referring more to their enjoyment of the work or to the fit of the work with their personality. These stories revolve around the more practical aspects of the work. For these music-thanatologists, the work made sense and was a natural extension of their previous interests and professional experience. Not every story fits neatly into a single category. Many music-thanatologists had careers in nursing, psychology, music therapy, alternative medicine, and ministry, and their professional trajectory curved easily toward music and end-of-life care. Even those whose careers were unrelated could connect elements of music-thanatology to earlier experiences in their lives. However, in

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most cases, the stories reveal a willingness to consider the idea of vocation and what it means to be called to the bedside. BELLS, WHISTLES, AND LIGHTNING: THE CALL THAT COMES IN AN INSTANT One of the most famous images of vocation is Moses at the burning bush. The story originated in the Hebrew Bible, in the book of Exodus. Moses, an Israelite who was raised in the powerful Pharaoh’s home, hears a voice calling to him from a burning bush. The voice tells Moses to go to the Pharaoh and demand that the Israelites, who are being held in slavery, be released. Moses asks questions of the burning bush. Who is the voice? How will he prove that the voice sent him? What will make the Pharaoh release the Israelites? Moses argues with the voice, saying that no one will believe him, and besides, he’s not a skilled enough speaker for such an important task. The voice continually addresses Moses’s concerns and insists that he is the one who must take on this role. Ultimately, Moses relents and accepts his call. He leads the Israelites out of Egypt and into the Promised Land. The surprising and humble moment at the burning bush marks the start of Moses’s transformation into a powerful religious leader. The call, while surprising and somewhat frightening, is also inexorable. The voice promises to provide the resources necessary to do the difficult task, even while Moses questions his capacity to fulfill the command. The feelings of inevitability, doubt, and surprise in this call story are present throughout the stories music-thanatologists tell. For some, like Christine Jones of Ogden, Utah, the moment of being called is as clear as a spotlight shining down on her.5 While this instant clarity is not typical of all music-thanatologists, it points to an experience that is typical: the work immediately captured her imagination. Right away, she knew she wanted to learn more. On that day in 1992, Jones was completing a master’s degree in integrated learning and education at the University of Montana. Therese SchroederSheker was visiting campus and made a presentation about music-thanatology. According to Jones, Schroeder-Sheker came out on stage playing a shruti box, a handheld instrument that produces a steady drone. Schroeder-Sheker sang a portion of chant over the drone. Jones remembers that when she finished singing, she joked with the audience, “You thought I would be an old lady.” She then shared the story of her early experience with the dying man at the geriatric home where she worked, who died in her arms as she sang to him. Jones was transfixed: “And when I heard this story I felt called, instantly called. I used to describe it as though . . . someone had pressed a button that connected me, like a jolt, like a hot wire to the divine. And I felt that I must

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do this. That it was the most important work I had ever heard about in my life.” Chris was already a singer with a lot of performance experience. Unfortunately, she also experienced stage fright. Learning about music-thanatology made her realize she could use her voice in a completely new way. She knew instantly that she wanted to apply to the school. Seeing Therese on the stage, I felt like I had been called into the light. One of my favorite movies is The Blues Brothers. John Belushi’s character had a calling to get some money, and he cartwheeled down the aisle of a church in the light. And I felt like I was cartwheeling down the aisle to Therese. I am there! I am going to do this and I’m going to finish this and I’m going to put blinders on no matter what comes my way.

Jones laughs as she describes an assumption she made about the curriculum: “So I went to the first day of school, and they said, ‘Time to order your harps!’ And I said, ‘What?’ I thought I was going to be singing to these people. But it just seemed to be the right thing. A matter of being in the right place at the right time.” In spite of her surprise, Jones never wavered about her call to music-thanatology. She recalls, “Once I saw her and heard about the work, that was it. If they had told me that I had to play ten instruments I still would have done it.” Like Jones, many music-thanatologists come to the work with a background in music. Others come from a background in medicine, or spirituality and ministry. But a few music-thanatologists make a complete departure from their previous professional lives. Barbara Cabot was at the end of a 20 career in banking, primarily in internal audit.6 Her call was as clear as the light Jones describes. On Christmas Eve in 1996, Cabot had dinner with friends. When she got home, she turned on the television. She saw a woman with a harp walking through the hospital. It was a profile of the Chalice of Repose Project on Nightline. Cabot sat riveted through the entire program. She says, “When I was watching it, it was like bells going off, and lights flashing and whoowhoo-whoo! This is it! Gotta go do this!” She immediately wrote to the television network and asked for a tape of the show. She continued to be fascinated, and contacted the Chalice of Repose Project for an application. As she considered attending, Cabot noticed changes in her own behavior and attitude. She had always been someone who fell into things, rather than carefully planning goals for her life and the steps to get there. She realized that this was the first time she was pursuing something she was passionate about. Cabot recalls, “The reason I had to do it was that if I didn’t, I’d never be able to say, I hate this job, I want to do something else. Well, here’s the something else. Do it, or shut up. It was a very strong call, and there was never a moment when I didn’t consider trying to get there.” As Cabot prepared her application materials, she had to

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call friends from her faith community to ask what the application questions meant, because “you don’t get the same questions in audit that you do in contemplative musicianship.” Cabot has never doubted her strong call to music-thanatology. While she completed her training at the School of Music-Thanatology, she met her partner, Sharilyn Cohn. Together, they cofounded a clinical on-call musicthanatology practice in Portland, Oregon, called SacredFlight, with musicthanatologists Anna Fiasca and Suzanne Cerddeu. Today, Cabot and Cohn run SacredFlight together; Cabot is its business manager. In addition to providing music vigils through local contracts, they offer public concerts, publish a newsletter, and present at professional conferences. During the first years of the business, Cabot worked part time in another field. She knew that this was something she would have to do until SacredFlight could sustain itself. After several years, she was able fulfill her dream of working full time for SacredFlight: “It’s been always a feeling of there will be a right time. It will happen in its time. Some people would say ‘God’s time,’ but I’m not attached.” Cabot thinks of the timing as being “in the stream of how things are supposed to happen.” At the time of our conversation, SacredFlight had recently seen a rapid rise in the number of music vigils over the previous two years. After several years of working as a music-thanatologist, Cabot can now see that her decision was perhaps not quite as divergent as she originally thought. Although the call initially required the new vocabulary of contemplative musicianship, in time she began to see how music-thanatology related to earlier parts of her life. At the beginning it was . . . the bells and the lights. And then, as I went through the process, I realized that in my life there were all these strands of yarn, and they’d been all knotted up and tangled, but at this point, they formed themselves into a braid, something that made sense. All these things, all these different pieces of my life.

Cabot’s partner, Sharilyn Cohn, heard a literal voice speak to her the first time she heard about music-thanatology.7 She and Cabot did not know each other on the night they both first heard about music-thanatology. Three time zones ahead in Atlanta, Cohn watched the same Nightline episode about the Chalice of Repose Project. Cohn’s playful sense of humor and Southern accent emerge as she jokes, “I saw it first.” She was a professional cellist running a successful sales and marketing fulfillment distribution business that she had founded. As she watched a few moments of the television show and saw the harps being carried down the hospital hallway, her reaction was immediate: “I took one look at that and kept right on going. The harp was not even really a musical instrument, back in my snobby professional cello days. And also, I didn’t like hospitals.”

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A few moments later, Cohn became more curious about the harps and turned the program back on. As she watched, she had the sudden feeling that she would do this work. She recalls, “Time stood still and I heard a voice in my head, ‘This is what you are to be doing now.’ ” The next day, she began to make phone calls to people she thought might be able to give her some guidance about using the harp with dying patients. She also sent away for materials from the Chalice of Repose Project. After the package arrived in the mail, her impulse was to throw it away, and she forgot about it. She completed a weekend training in a different therapeutic music program that was offered locally, hoping to avoid giving up her business and music career, but she found it unsatisfying. She continued to feel pulled toward music-thanatology, and she secretly bought a harp and began taking lessons. “I didn’t want to tell any of my friends that I had a harp. They would never let me live that down,” says Cohn. A few months later, she found the packet of information from the Chalice of Repose Project that she thought she had thrown away. She did not open it, setting it aside for a music therapist friend. Months later, she came upon it a third time and finally read through it. Her decision to become a musicthanatologist arose in that moment: “And then I thought—you know, you can go do this. Just sell your interest in the company.” At this point, Cohn became completely committed to becoming a music-thanatologist. She says, “For me, once I made the decision to do Chalice, if I didn’t get into that program, I thought I was going to die. I couldn’t not do music-thanatology. It’s like—we just have to do it, we have to make this work.” Like Moses at the burning bush, Cohn tries to find a way around giving up the life she knows before fully embracing her vocation. She tosses away the packet of information. When she finds it again, she doesn’t open it. She does not want to move to Montana, and she does not want to lose respect from her musician friends by playing the harp. Although she is now the executive director and cofounder of a successful clinical music-thanatology practice and she codirects a training program for new music-thanatologists, Cohn’s story reveals some of the complexities of considering music-thanatology as a vocation. Even for those who have the experience of hearing a clear voice, it is still difficult to begin. Among music-thanatologists who experienced a strong initial call, some discussed the role of spirituality or religious practice in hearing this call. Their conversation with God was sometimes literal, asking for guidance, support, or confirmation that music-thanatology was the right path. These conversations happened through prayer, meditation, and for some, letter writing. A vibrant woman in her thirties, Margaret Pasquesi is nearing the end of her pregnancy with her second daughter when we discuss her call to music-thanatology.8 Raised in a devout Roman Catholic household with nine siblings, she is familiar with traditional religious notions of vocation. She

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learned about music-thanatology during graduate school in 1998. After years as the lead singer of various alternative rock bands, a school project required her to do a new kind of individual vocal performance. The small audiences she sang for (sometimes an audience of one) responded immediately to the intimacy of being sung to with live voice, and Pasquesi herself longed to continue in this new type of performance, in which the focus was the listener and not the performer. But she was frustrated by her lack of clarity about how to begin and turned to her writing practice for guidance; “I wrote a letter to God. I literally said, “What the heck am I supposed to do? I’m in graduate school, trying to find my niche creatively. I’m finding myself doing these small performances that are so profound to people. What am I supposed to do with that?” Minutes after writing her letter to God, and in a fit of defiance at not getting an answer, Pasquesi turned on the television and found a Dateline report about music-thanatology. As she watched it, she realized immediately that this was God’s response to her letter. She waited for two weeks after seeing the television report, knowing that any serious consideration of music-thanatology would be life changing. She went on a retreat during this waiting period, where she felt moved to arrange a music vigil for a friend who was dying. “I heard, really clearly, ‘Why not arrange a vigil for Jenny?’ . . . I went out into the snow, and got on my knees, and just said, ‘God, dying is such a private thing. If you want me to do this, you’re going to have to make it happen.’ ” God did make it happen. When Pasquesi called Jenny to talk about music-thanatology, her friend was interested. Pasquesi was able to make the arrangements through the Chalice of Repose Project. A music-thanatologist traveled from Seattle to her friend’s hospital room in the Midwest, offering her a series of music vigils over the course of a weekend. The music-thanatologist left on Monday morning, and Jenny died that night. Over the next year and a half, Pasquesi felt that she was being “carried by a force greater than herself ” as she slowly and methodically received surprising and seemingly endless varieties of support that brought her to the School of Music-Thanatology. She even dares to call this stream of events “grace-filled miracles.” However, once she arrived in Montana, her life became much more challenging. She had a difficult housemate and felt as if “God was gone.” Pasquesi believes that her ego got the best of her, and she “was really sucked into that idea that I had a calling to be a music-thanatologist” and had some romantic notions about the work. She was forced to realize that deciding to pursue a vocation does not mean that things are going to be easy. She considered the difficulties she encountered in light of her call. Does suffering mean that you’re not actually on the right path? Or that you are on the right path, but pain is inevitable to vocation? Is suffering on a vocational path an essential element of inner transformation?

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These questions are confounded when Pasquesi encounters the frequent assumptions people make about music-thanatology. Our profession is such that others can easily imagine a lofty vocation: “Oh, you’re an angel. Oh, it must be so nice to have work where your hands don’t get dirty.” And while I do feel tremendously, gratefully blessed to do what I do, I have also come to an acceptance of, and a willingness to admit to others, the nitty-gritty of being a practicing music-thanatologist. Interestingly, I have found folks are relieved to hear that yes, I have had a few dark nights of the soul while schlepping my harp around Chicago for miles and miles in the middle of winter. And at certain moments, when explaining music-thanatology for what definitely seems like the millionth time, I have wondered if this could still be my calling. And sometimes, when I hear yet again the, Your-Life-Must-Be-Perfect comment, I have secretly said inside my head: “Dude, I work with people who are actively dying. Like all the time,” and wondered what I could possibly have been thinking when I said yes to changing my life in such drastic ways.

Pasquesi feels the most centered when she is in the music vigil, sitting at her harp. In spite of the challenges of her call, she has worked consistently as a music-thanatologist since she graduated from the School of Music-Thanatology and intends to keep doing so. “I’m just going to keep showing up and doing this as long as they let me,” Pasquesi says. While she feels strongly about her vocation, she does not believe that being called to music-thanatology makes her different from other people: “Every human being has a reason to be here on earth, and often at the end of life, individuals are searching for meaning. The music vigil frequently has offered people a nonverbal method of making sense of this mystery. There’s something unique about everyone. I think the meaning of life is to come into your own. Who are you, really? Why are you here, really?” Her road to musicthanatology has been exceptional, but not singular. As she says, “This has been an amazing, interesting, wild ride — just like everyone else’s life.” REFLECTING ON VOCATION: THE CALL THAT COMES AT THE WRONG TIME Not every music-thanatologists heard a voice, had a strong feeling, or received an immediate reply to a letter to God. For some, the call to musicthanatology was gradual. Even if their initial response was strong interest and excitement, they did not choose to immediately quit their jobs and begin the training. For some, it was the realization that once they began the work of music-thanatology, they would not be able to turn back. For others, the delay had to do with personal or family obligations. Loraine McCarthy had to wait several years before she could explore her interest in music and end-of-life care. I happened to visit McCarthy in her

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home on her 80th birthday.9 She and her husband, Charlie, a retired United Methodist minister, sat in their living room along with music-thanatologist Sr. Vivian Ripp. McCarthy and Ripp pioneered a music-thanatology practice at Sacred Heart Medical Center in Eugene, Oregon, working together until McCarthy’s retirement. The steps leading to their collaboration began many years earlier. McCarthy ran a hardware store with her first husband in Seaside, Oregon, for 25 years. At the same time, she was a church organist and played the violin. In 1980, she heard a talk on hospice at the hospital where she was a board member. She went to her husband and explained that she wanted to pursue hospice work. The hardware store was doing well, and McCarthy knew that he would be able to run it without her. Soon after this conversation, her husband had a heart attack while they were on vacation. He survived, but his health concerns required McCarthy to continue to help with the family business. McCarthy’s husband died 9 years later, and she and her family decided it was the right time to sell the store. McCarthy continued to be interested in end-of-life care. She recalls, “I just kept thinking, there has to be a combination between music and the hospice.” Then she learned about music-thanatology from three different sources in the same week: a yoga journal, a book chapter, and man she had known since childhood who encouraged her to look into it. She applied to the school and was accepted. She remarks that she was lucky to be accepted at an age when most people are preparing to end their careers, not begin new ones. On the day that McCarthy left Oregon, her granddaughter stood in the driveway crying, thinking that she’d never see her again. Even so, McCarthy had to follow her call. It’s a passion, it’s a calling. I always said I didn’t know what I wanted to be when I grew up until I was 65. Bravest thing I ever did was to pull that big Ryder truck out of my driveway to drive to Missoula, Montana. I drove to Portland by myself, towing my car. Then I met my brother, and we went to Missoula because it was kind of a long trip.

Once McCarthy completed her training, she worked with Ripp to begin a music-thanatology program in Eugene, Oregon. McCarthy retired in 2004 but continues to be an advocate for the work. She says, “So it’s still a passion even though I don’t have the voice to sing any more, don’t have the hands to play very much.” She continues to experience music-thanatology as her vocation, and volunteers at the hospital, doing administrative work or other tasks with her former colleagues, “just to be around my people.” Her second husband, Charlie, has been a strong supporter of McCarthy’s work in end-of-life care. His quick sense of humor emerges as he talks about McCarthy’s career as a music-thanatologist. When McCarthy was on call and needed to load her harp quickly into the car to go to a music vigil, Charlie

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affectionately called her “my wife, the fireman.” He designed a wooden cart for McCarthy’s harp, so that she would not have to carry it in a case with a shoulder strap. The cart design was so popular with the other music-thanatologists in the area that Charlie has now built 14 of them and has shared the plans with others so that they can build their own. Charlie explains that design of the harp cart has evolved over time. “We added the place for the stool, then the place on the front for papers. We always said if you wanted cup holders, then that was going to cost you extra.” In spite of his joking, Charlie’s belief in the benefits of music-thanatology means the world to McCarthy: “So there couldn’t have been a more supportive person. He goes walking in the mall and talks about music-thanatology. He has given away more of our CDs than anybody. We buy a bunch, and he sends them. I’m so fortunate to have him understand my passion.” Many music-thanatologists enjoy strong support from their spouse or partner—some of whom are also music-thanatologists. However, even with the support of family and friends, and a clear sense that music-thanatology is the right path, it often remains difficult to discern the best moment to begin. In some cases, music-thanatologists reflect and consider their call for several years. Even when they think the time might be right, they still invite further confirmation through spiritual means. Anna Fiasca, who shared several stories in chapter 4, is a music-thanatologist in The Dalles, Oregon.10 Fiasca was a classical violist who had a strong feeling that performance was not the right venue for the power she experienced in music, the power of connecting people to one another. Although she did not have words for it initially, she longed to use music “more in a way that felt like ministry.” She had no idea what that would mean for her career. But, like Pasquesi and her search for a new way to use her voice, Fiasca was “open and looking.” She first heard about music-thanatology while reading Medicine and Miracles, edited by Don Campbell, which has a chapter on music-thanatology. Fiasca’s reaction was immediate. “I literally broke into tears. I just felt like that [was] what I’d been looking for,” she recalls. She was not able to begin the training immediately and decided not to make the decision right away, believing that one had to have “pure motives” to be a music-thanatologist. She put the book away. When she returned to it a year later, she had the same tearful response. She did this several times, putting the book away for a period of time, and then taking it out again and feeling the same strong emotion. When Fiasca was ready to seriously consider applying to the school, she made an intentional request. She asked for confirmation that music-thanatology was the correct call for her. She received an answer in a dream. I just put it out there that if this was my calling, I would like some affirmation. Some time after that I had a very powerful dream. In the dream, somebody killed

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me by slicing my body open. In the dream, I knew that if I remained where I was, I would be facing my own death, and I had an escape and I knew I needed to face my own death. Then this person actually killed me. The experience that I had was no pain whatsoever. My body literally opened and nothing but light was in there. I expected blood, but there was light pouring out of my body. And then my physical body fell away, and I realized that my essence was light. I actually ascended into this kind of ethereal space where there were other beings around me. And realized that death was not anything to fear. I was just in absolute peace, the deepest peace, and then . . . I heard in some way that I wouldn’t be staying, that I would return to my body. But now that I had this knowledge it would be my work to be with people who were dying, because I could help bring them peace at the end of their lives. So I kind of felt like this was my answer. So I do feel, absolutely, that this was a calling for me.

Fiasca completed the training at the School of Music-Thanatology. After her first year of school, she made a presentation at the Mid-Columbia Medical Center, where she had previously been a volunteer musician. The hospital was enthusiastic and agreed to fund her second year of tuition if she would return to work for them once she completed her training. It is a small rural hospital with 49 beds and a strong commitment to end-of-life care. Anna works about half time at the hospital and is on the faculty for the musicthanatology training program at Lane Community College. Anna’s experience of her vocation has not faded with time. Like Pasquesi, she has encountered difficulties and questions about this path. In spite of “moments of self-doubt,” she feels she must continue. And there are so many things about it that are not clear, not delineated, and in the moment it’s hard to tell whether anything you’re doing is making any difference, whether it’s helping at all. And so sometimes I’ve walked out of a vigil and thought—boy, I don’t know if I should be doing this. I don’t know if I’m up for this. But overall, there’s just no question that I’m called to do this, that even if at times I don’t know if I bring everything that I wish I could to a vigil, or to my time with the patient, I feel that I have to do this work. I really do have to do this work.

THE CALL THAT COMES FROM WITHIN A DIFFERENT PROFESSION Some music-thanatologists heard a call to music-thanatology from within the work they were already doing. For Jan, a former psychiatric nurse, and Annie Burgard, a former music therapist, the call to music-thanatology began with an unusual experience of patient care in different fields. They both described the ability to perceive the wholeness or essence of the individuals they worked with. This perception led them to consider making changes in their professional lives that would eventually lead to music-thanatology.

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For Sr. Vivian Ripp, a chaplain, music-thanatology was a way to expand her holistic work on an oncology unit, and for Betty Barber, the call pulled together her work experience as a nurse and a musician. Judy Fay, who had no previous musical experience at all, found music-thanatology to be a natural progression from her work as a counselor. These stories reflect one of the complexities of being called. Each of these music-thanatologists had a previous career in medicine, music, or spirituality. Their call arrived not as a sudden flash of lightning, but instead as a slight, but specific, diversion from the path they were already on. Far from being called away from their original work, it was their original work that provided the insight that moved them toward music-thanatology. Each had to walk fully down the path they were already on in order to get to music-thanatology. Although she now lives in Montana, Jan’s Tennessee accent is still audible. Her call to music-thanatology began during her long career as a psychiatric nurse, when she began to have spiritual experiences that her medical training could not explain. I just started perceiving within the patients that I was working with, something more than I had been aware of previously. [It didn’t] have to do with mood, contact with reality, or what was going on with their neurotransmitters. I began to be aware of the sacred wholeness within each person, even if they were otherwise very disturbed . . . Some image of their soul presence was emerging for me. This was intriguing, and I didn’t know what to make of it, but I decided that whatever I had thought about consciousness and the human mind and spirit was probably due for a revision.

Jan’s call came in the form of an interest in human consciousness. She began to move away from the medical model of her nursing training, which focused on “broken parts, and things that weren’t working, neurotransmitters that weren’t firing, or were firing too much.” Her relationship with patients began to change. “I was somehow able to have a person who was crazy, if you will, sit in my office, and I could behold something within them that was whole and perfect. And they weren’t teaching me how to do this. If I had told my colleagues about this, they would have thought that I was crazy.” Jan’s changing perceptions led to a change in her religious practice. She moved away from her Christian tradition and began a period of study with a Tibetan Buddhist group. She studied states of consciousness and ways in which people are able to rest in pure awareness. She believed that the dying process had something to do with this state of consciousness and became a hospice volunteer. As she studied Buddhism, she found that the topic of death and dying was not denied in that tradition, and that reflecting on death was a part of the spiritual practice. She also found that the hospice patients she met experienced new states of awareness. She says, “I found . . . that patients

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were accessing this state of pure awareness, as they were withdrawing their attention from the external world, and turning more inward as a result of the process. And they were telling me about this state of awareness.” As Jan continued to move away from her medical background and more toward a spiritual orientation, she heard a Public Radio program called New Dimensions, which featured a story about music-thanatology. The connections between all her interests came together immediately: “I had always experienced music so deeply. And I understood it had the power to transform . . . [T]here was a resounding ‘Yes.’ I wanted to serve the dying, and I didn’t want to do it in a medical way. I wasn’t called to do that at all. I wanted to serve spiritually.” Jan was accepted to the school, and she and her family moved to Montana. She is aware of the sacrifices that her family made in order for her to pursue her call. She says, “I was aware of the pressure, which I created for myself, that I had sold my house in Tennessee and brought my family here, so that ended up being reinforcement. My family sacrificed a lot. On another level, I never doubted the work, or that it felt like I was meant to do it.” Remarkably, a second music-thanatologist also described a capacity for perceiving the essence of patients. Annie Burgard, who shared a story in chapter 4, was a music therapist before becoming a music-thanatologist.11 Her first job was at a psychiatric hospital where, like Jan, her focus was not on the person’s illness. Says Burgard, “My strength was seeing the essence of the person, seeing their real being. Being a music therapist I would have a lot of success in my work, I think, because my focus was on their health and not their illness.” Later, she worked with chronic long-term acute care patients, many of whom had head injuries. Burgard continued to be able to “see” something beyond their physical and neurological limitations: “My focus was seeing who they were, even if they weren’t able to do a thing. Through music therapy I could see who they are, their essence. I think I’ve always realized that we are more than our physical bodies. We have a spirit, we have a soul.” Burgard’s attention to this aspect of people echoed the spiritual focus of her work. Once she became a music-thanatologist, she would begin to articulate this through the language of ministry. After working with elderly and dying patients, she was inspired to become a hospice volunteer. From there she moved to Washington to work with patients with AIDS. When she read an article in the Utne Reader about music-thanatology, she applied to the school and was accepted. An important element of Burgard’s vocation is a focused call to work with the dying. She says, “The call was when my ears perked up at hospice, and I wanted the work I was doing to be with the dying.” While working in the hospital as a young person, seeing death more frequently, she learned that she “wanted to be around that because somehow there was the potential for a lot of meaning.”

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As a music-thanatologist, Burgard focuses on ministering to patients. She believes that music-thanatologists are “called to minister.” Burgard maintains that it is necessary to recognize the patient’s essence and to reflect that essence through the music. “A sense of meaning is brought out through the music, a direct reflection to me of the person that is lying there and the people who love them,” she says. Like Jan, she is oriented and called to serve the dying spiritually. Now that she works in a hospital’s spiritual care department, she sees her work comfortably integrated as “music medicine.” Some music-thanatologists combine their religious practice with their professional lives much more visibly, and their call to music-thanatology is part of a formal religious vocation. Sr. Vivian Ripp is a Catholic Sister of St. Joseph.12 She has a strong commitment to music-thanatology that has led her to take several leadership roles in the field’s professional organization, the Music-Thanatology Association International (MTAI), of which she is a founding member. She chaired the committee that wrote standards and competencies for the field and has been a mentor and leader through the development of the certification process of the MTAI. Ripp’s call to music-thanatology began at her workplace. She was a chaplain at St. Patrick Hospital in Missoula, Montana, when Therese Schroeder-Sheker was invited to make a presentation about music-thanatology. As she listened to Schroeder-Sheker’s lecture, she recognized much of the music being referenced from her years singing Gregorian chant out of the Liber Usualis, the book of music used by Catholic religious communities. As I listened to her, it fit so much in my background . . . The book of the chant music that we have in our repertoire is all the traditional hymns that are sung in religious life. So I learned those all when I was young. I have a master’s in spirituality, and I have an interest in Jungian psychology. And so the whole spiritual psychology was just up my alley. And then I worked on medical oncology and did part of my training on the hospice unit . . . when I did my chaplain training. So the whole being with the dying piece was very much a part of my call at that time.

During Schroeder-Sheker’s presentation, Ripp happened to be sitting near the president of the hospital. Ripp turned to him and said that if SchroederSheker ever brought her school to St. Patrick Hospital, she wanted to be in the first class. He agreed. She could see what a benefit music-thanatology would have for the care of her patients. She had already expanded her skills to include other modalities outside the traditional chaplaincy skills: “I’ve always been a holistic chaplain. I learned therapeutic touch, which is a way of using energy which is similar to using music as energy. When I was in Missoula in those early years in medical oncology, the door was totally open to being able to explore guided imagery, therapeutic touch. It wasn’t that anybody promoted that, it’s just that there were no closed doorways to my being able to do

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holistic chaplaincy.” Ripp recognized immediately that music-thanatology would be an excellent addition to her chaplain’s repertoire. The School of Music-Thanatology moved to St. Patrick Hospital that fall, and Ripp entered the following year. She continued to work as a chaplain while completing her training as a music-thanatologist. Once she finished her training, she accepted a position as a music-thanatologist and chaplain in Eugene, Oregon. Today, she maintains dual roles as chaplain and musicthanatologist; her experience as a holistic chaplain allows her to keep clear boundaries between the two roles. Betty Barber, a music-thanatologist in Spokane, Washington, also maintains dual positions, though not within the same institution.13 She is a full-time nurse who does music-thanatology in a community practice called Sojourn. She came to music-thanatology after observing the quality of care her mother received at the end of her life. Barber had taken care of dying patients, but felt a sense of helplessness. She says, “When people are clearly dying, there’s nothing to fix. All you can do is your best to keep them comfortable. Swabbing the mouth, turning, repositioning, pain medication. But when the time comes that there’s nothing more to say, and nothing more to do, that’s where music-thanatology comes in.” Barber was impressed with the nursing staff at hospice and began a postgraduate certificate program in Hospice Education, Bereavement, and Death Education through Southwestern College. Music-thanatologist Judith Shotwell made a presentation to the group. Barber says, “She brought this harp in, and that was it.” Barber had been a musician all her life, and this presentation pulled together her interests in music, nursing, and caring healing. In discussing the unique role of the music-thanatologist, Barber noted the centrality of the music-thanatologist’s inner life. It is not simply a matter of giving a musician the music and sending them into the room. “There has to be an element that is beyond the simple structure of the music and the skill of doing the music,” says Barber. She believes that music-thanatologists meet people at “a whole other level,” which requires maturity and life experience. Barber continues to feel a strong call to practice music-thanatology and now finds that she is unable not to engage in the work. When she recently began doing fewer music vigils, she found it difficult to stay away: “I can’t not do the music. The harp is there, it calls to me. I find myself needing to play vigils, needing to be present.” It was not unusual for practitioners to echo the idea that once they began to practice music-thanatology, they felt deeply called to continue to do the work. For Judy Fay, the call to be a music-thanatologist happened not because of her relationship with music, but in spite of it.14 Her work as a counselor and her experience with grief and bereavement led her naturally toward end-of-life care. One day while traveling through Missoula, Fay saw a poster

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for the winter concert at the Chalice of Repose Project. Fay was surprised to see these words together, and they caught her eye because she had reflected extensively on the image of the chalice as well as the word repose in her personal practice. She was determined to attend the concert, even though it would require a two-hour drive. There was a terrible winter storm the night of the concert, but she went anyway. “I drove over in a blinding snow all the way to Missoula. During the concert, I sat in the midst of the music and just wept,” she says. It wasn’t until she attended this concert that Fay learned that these musicians cared for dying patients. She had been involved in hospice in her counseling practice and also ran a group for people with HIV and AIDS and their families. She had also been personally affected by grief and bereavement, having been widowed at the age of 30. In coping with her own loss, Fay became a student of psychology. She read all that she could about near-death experiences, and the work of Stephen Levine. She took classes with Elisabeth Kübler-Ross, focusing on grief and bereavement, and she became a grief and bereavement counselor working with hospice. Fay called the office at the Chalice of Repose Project after the concert and explained that she worked with end-of-life groups in Helena, Montana. Although she had intended to invite the music-thanatologists to Helena to work with her clients, she was instead invited to apply to the School of Music-Thanatology. Fay had no music background and initially could not imagine herself playing music at the bedside. But the work was so “amazingly compelling” that she applied to the school. Fay’s story offers the unusual perspective of a practitioner who had absolutely no music background before attending the training. In spite of years of deliberate work on her own inner life, her first experiences with music shook her. Says Fay, “It was terrifying, absolutely terrifying. In my professional counseling training and because of my commitment to my own personal growth, I was used to turning over rocks and looking under them. I really thought that I had met the major issues in life.” But she met a new set of fears as she learned to play the harp and vocalize in front of people for the first time. One of the first days of class we were instructed to solo both vocally and on the harp. Since I had never sung or played before it was a huge assignment for me. It was especially challenging to vocalize, to solo, in front of the group. I remember thinking I’d rather take my clothes off and run down Higgins Avenue, downtown Missoula, than try to sing by myself in front of others.

She called on her psychology background for courage. “I had enough experience to at least have a framework for what it meant to have your voice heard,” says Fay. At the same time, she felt supported by the music of her classmates: “I felt so privileged to be in the presence of this beauty, of the beauty of the music.”

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Fay understands her music-thanatology work as a vocation, and her remarks highlight a component of the contemplative practice of musicthanatology. Her personal narrative and professional experience led her to be comfortable as a loving presence at the bedside of dying patients. Unlike music-thanatologists who were professional musicians longing to use music in a new way, Fay brought her professional experience of compassionate attention to her new training as a music-thanatologist. It was relaxing for me personally to walk into the rooms. The level of intimacy in the room is what allowed me to keep coming back, to keep showing up. The experience of being with someone who is so close to death, and is so vulnerable, was the element that was so compelling for me. It was the same experience that I had in my counseling practice. It felt like “home.” It was the same interior space where I met another person in their pain and suffering and helped them “let go.”

She eventually learned to trust that her work in the music vigil was enough, even if she was not a virtuoso on the harp. And at some point I had to put my personal doubts aside and trust that my presence was enough. My personal experience of the beauty and power of the music was so exquisite—I just had to trust that I was where I needed to be. I had to sing and play at the bedside in the midst of my questions and personal uncertainties. I had to “let go” of my fears, my inadequacies, my need to know and to control. . . . I had to personally experience the “little deaths” that would allow me to witness at the bedside of the dying.

DEFINING THE SACRED: THE SPIRITUAL CALL While some music-thanatologists define their call in the context of their previous careers, other relate their call more explicitly to a sense of destiny or their own spirituality. Jeri Howe is a music-thanatologist at Providence Regional Medical Center Everett in Everett, Washington.15 Her strong spirituality is woven throughout her life. “I guess I’ve always felt a strong spirituality in my life . . . it was mostly loving nature and loving God,” says Howe. Already a pianist, she began to play the harp in 1984. In 1991 she was invited to play music for a retreat for people living with AIDS. She quickly learned how much music could mean for people who were nearing death. Howe recalls, “I would play late at night, and some of them would come and lay on the floor near the harp and just express what a gift it was for their souls and their bodies to receive that sort of soothing music that just let them relax and deepen their spiritual experience.” Some people who had heard her invited Howe to play for them when they were admitted to the hospital. She also played at a facility for people who were living with AIDS. Occasionally, she was invited to play the harp for people who were dying.

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Like many other music-thanatologists, once Howe heard about the School of Music-Thanatology, mention of it arose multiple times. These connections came from a wide network of friends and family. She began to feel “pulled in that direction” and decided to apply to the school. Once she was accepted, she commuted between Seattle and Missoula—a 500-mile trip one way. In the training, Howe was able to fulfill a desire for further education about religion and spirituality. It was so fabulous for me. It was just what I longed for in a training. I was a lover of Emily Dickinson, and my class had a contemplative time with her poetry, and that was really meaningful for me. That was a spiritual aspect of the training I had longed for. I’d always had a leaning toward spiritual training and learning about religion, and so I felt very inspired and nurtured by the classes. I’d be so full of good stuff it kept me awake on the drive from Missoula to Seattle.

Howe’s sense of vocation was gentle and focused on the absence of obstacles in the journey to the school. She says, “I guess I felt kind of called, not in a dramatic way, but I felt like I was being led and guided towards that. Everything worked out for me to go that route, and the winter driving wasn’t bad those 2 years . . . I just was very lucky and I did feel called, like I was supposed to be there.” After 12 years of being a music-thanatologist, Howe still experiences the music vigil in a deeply spiritual way: “Not for every patient I play for, but there are those situations where there’s something extra that’s coming through. And I know everyone experiences that, but it’s an awesome experience to know that it’s coming through me, and is not coming from me. That experience doesn’t lessen over time. It’s a holy and sacred experience.” For Lawrence Duncan, a music-thanatologist at Hospice of Missoula in Missoula, Montana, the call to music-thanatology is deeply woven into his sense of his own destiny, which he says is “to learn how to serve.”16 A lifelong musician, he felt called to be a contemplative musician early in life. He studied bassoon and saxophones in high school and college but chose to begin a professional music career in the Texas music scene before completing his formal education. This phase of his life culminated in the loss of his connection with the muse that had since his youth inspired him, what for years had been an essential part of his being. This was a devastating and disillusioning turning point. He asserts that in our popular culture, the willingness of the young artist who feels called to serve needs to be tempered with discernment, otherwise the ideal of serving can slip into its shadow, what Duncan calls “the enabling of dysfunction.” No longer a working musician, Duncan relocated to Denver where he gradually reestablished his relationship to the muse by voluntarily performing and improvising music for The Christian Community at the Michael-Sophia Chapel and teaching classroom music at the Denver Waldorf School. He met

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Therese Schroeder-Sheker shortly after moving to Denver, and in the early 1990s, they collaborated on a few music projects in the community. She supported Duncan as a musician and encouraged him to become involved in the Chalice of Repose Project. He began to meet with a small group of students at her home in 1992 shortly before she moved the Chalice of Repose Project to Missoula, Montana. Duncan enrolled in the Missoula program and graduated with the first class in 1994. Due to circumstances in his personal life, Duncan left the Chalice of Repose Project in the second year following his graduation, but remained a contemplative musician in other settings. He participated in the creation of Satsang Music Company in which four performance ensembles evolved. One of those groups, conceived and cofounded by Australian musicthanatologist Peter Roberts and Montana Public Radio program director Michael Marsolek, is “A Musical Dreamtime Journey,” which has provided contemplative music, verse, and prose for solstice and equinox events in Montana, Idaho, and Washington for more than a decade. After years away from music-thanatology, Duncan began to understand that while his musical life was fulfilling, he still felt something was missing. Another music-thanatologist in Missoula, Mary Werner, was active in MTAI and made Duncan aware of the annual conferences. These reminders were “like being tossed a life preserver,” he says. Duncan decided to attend a conference and ultimately began working as a part-time music-thanatologist. As Duncan returned to music-thanatology, he began to realize the kind of impact the work would have on him. He says, “It’s like I know it’s going to make me do the work I need to do in order to be the person I want to be. What else could do it? It feels like a matter of stepping up to the plate. Are you going to fulfill your destiny or not?” He soon began to have a new awareness of how important the music was to his patients. For a while there I was seeing people once every two weeks because it was working for me in terms of my schedule, and what I thought I needed in terms of time. Then I began to realize that this schedule wasn’t really satisfactory. There was not enough continuity. And in the meantime, I began to have the experience of meeting new patients who would hear what I had to offer them and they would say, “I know you must be really busy, but do you think you could come twice a week?” And I began to think—my God, you know, they need me. They really need what I have to offer.

For Duncan, starting to see his patients more regularly was “. . . a relief. It just feels like that’s what I’m here to do.” Although he feels that it may be “elementary” to realize that his patients need what he has to offer, Duncan feels like he is “rounding the corner of recognizing who I am.” He feels strongly that music-thanatology is connected to the desire he had, even as a teenager, to serve. “And it feels good to know that you’re doing the right thing, doing

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the thing that’s both called for, and is in you to do. And I guess it feels like I’m allowing myself to believe that it’s in me to do,” he says. Jane Franz, who shared her story about codirecting a music-thanatology training program in chapter 3, also experienced a deep spiritual call to musicthanatology.17 Her description of vocation was uniquely physical, a feeling in her body. Like Fay, her call came in spite of her lack of musical training. While Franz was not a musician, she had felt a call to work with death and dying her entire life. After her sister died of cancer in her thirties, without the support of hospice, Jane realized that there had to be another way to care for a loved one in the dying process. She developed a seminar on preparing for the death of a loved one called “Before the Crisis” and began teaching it at the continuing education level. She was involved in hospice in Boulder, Colorado, when someone gave her a brochure about music-thanatology. She was immediately enthralled. And I read it and said, Oh, I am interested. And I called the Chalice of Repose Project, and they said, “It’s about harp and voice.” And I said, “Oh, sorry. I don’t play an instrument, and I don’t sing.” And they said, “If you feel you’re called to the work, apply, and we’ll be the judge of that.” So I did.

Franz was accepted to the program and found it intensely challenging to complete the training while learning harp, voice, and music theory. “I compared it to med school and law school, and the amount of work was like going through both at once, without having musical skills,” says Franz. But she describes herself as the proverbial “silk purse from a sow’s ear” type of person and was determined to let the school fulfill its commitment to train her. Franz was motivated in this endeavor by her strong sense of call. She believed that this was work she was meant to do. Unlike other music-thanatologists, who describe their call as primarily emotional or spiritual, Franz felt her vocation as a physical sensation. For me, the experience of being called to this as a vocation was one I couldn’t at the time articulate. It had a visceral feeling. I felt it in my body, up and down, inside my body. I felt it in my head, but it wasn’t a thought process. It just kind of consumed me and I knew that I had to do this, that I was supposed to do this . . . I had to trust, past all of my good sense and judgment and go for it. And during the [training] process, I had to continue to trust, because I kept having this knowing that this was what I was supposed to do. It felt spiritual.

Franz cannot say exactly what gave her this spiritual feeling in her body. Something that is me and also greater than me. I don’t know how else to say it. I struggle with the concept of God, so I hesitate to say “God.” I think there is however, some spiritual, divine, or greater universal process that is hooked up

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with every human being. And that it is intelligent and all knowing and I am part of it. And when I hook into it, then it’s available to me. And 10 years later, I still feel that way.

The call remains strong for Franz and has led her to codirect a training program for new music-thanatologists, to take on a mentoring relationship with her students, and to maintain a vigorous work schedule offering music vigils. “I will be very surprised if I do anything else that is not connected to music-thanatology for the rest of my life,” she says. Franz is honest about the challenges of keeping up with her many responsibilities as practitioner, teacher, mentor, and administrator. She vividly describes the intensity of her work with the dying and compares this intensity to that of air traffic controllers or firefighters, “because it takes ‘rapt attention.’ I always think of rapt attention as this total focus and attention.” In addition to this focus, “you’re also open, flexible, calm, and loving. . . . It’s not an easy place to maintain hour after hour, vigil after vigil.” Franz believes that even with a clear vocation and call, practitioners still need to remain grounded. “I think this is why we do so much inner development. Because you’ve got to be pretty strong, and pretty OK with who you are, and within who you are. You have to be able to sit inside yourself and be there, and be that way — present and open and nonjudgmental and alert and loving and connected.” She laughs. “Phew. That’s a lot.” Franz takes this conclusion a step further and offers a radical observation about the nature of music-thanatology. She concludes that the true core of the music vigil is not the music played on the harp or sung with the voice. It is the presence and intention of the practitioner. “You know you don’t need the harp to do the vigil; you don’t need your voice. I really believe if my harp fell apart in the hall or I couldn’t find my voice, I could still go in and do a vigil. So much of it is the intention that we hold, and the attention we give, and that presence we bring,” she says. Franz would not be able to offer this calm, centered, loving presence without a vocation for the work. Her call to music-thanatology is both the driving force behind her practice and the source of grounded support when she feels overwhelmed: “I think if I didn’t feel called to this work, I don’t think I’d be able to [do it]. I’d be off doing something else. But because I have this calling, it’s second nature . . . I don’t think you could do it without a call. I just don’t think you could maintain it.” DOING MUSIC-THANATOLOGY WITHOUT A VOCATION Franz’s point is an important one. Not everyone I spoke to related to the word vocation, or call. While some were comfortable using the term, their descriptions of becoming music-thanatologists were much less about

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experiencing a strong call than about becoming interested in a new idea that made both intellectual and emotional sense. Once they pursued the idea, it fascinated and engaged them, but it was not initially tied to a spiritual experience. It was more likely that the work felt right. This is not to imply that these music-thanatologists do not have a spiritual life or do not reflect on the meaningful nature of end-of-life care. But an experience of call is not the primary reason behind their decision to become a music-thanatologist. Some music-thanatologists simply pursue their initial interest step by step. Tony Pederson, who shared a story in chapter 4, describes his journey in terms of his observation of the music’s efficacy.18 He worked as a certified nurse’s assistant on an Alzheimer’s unit at a nursing home in Missoula. Musicthanatologists from the Chalice of Repose Project frequently played for his patients. He didn’t know much about the school, but he knew that he could observe changes in his patients as a result of the music. “[Before the music,] they had profound distress that you would see on their faces,” says Pederson. “And then after 45 minutes of music, their faces would be serene, and all their distress lines were just placid. And I just wanted to know more about this.” On the floors where Pederson worked, each patient room was connected to another by a bathroom. When he had the chance during a shift, Pederson wanted to observe the music vigils for his patients. He would enter the bathroom from the connecting room. Peeking through the door, Pederson watched the harpists and listened to the music. After the music vigil, he would meet them in the hallway. And then each time they would come out, I’d have a little question for them. What’s the deal with this harp? And I would feed them and give them water to keep them talking for a little bit. The more I found out, it just started to make sense to me. They were probably sick of me asking questions, and invited me to their graduation as a way of getting more answers. I showed up and heard Therese Schroeder-Sheker, and heard her talk about being a [certified nurse’s assistant].

For Pederson, music-thanatology was a practical choice: “To call it a calling, I don’t know—it just made sense.” Pederson found out about the training program just before the application deadline and had to stay up all night to finish his application. Every step that followed his entry into the training “just made sense . . . I think that’s why I stayed with it for so long. It continued to be a good fit.” Pederson certainly considers the idea of music-thanatology as a vocation when he speaks with patients and families. As I think about a vocation, when I talk to people, explaining what I do, people have a lot of questions and interest in how I came to do this. And

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a thing I hear myself saying is that I really feel like I’m doing what I’m supposed to be doing. And that’s a very satisfying thing for people to hear. Maybe it’s a sign of the times, but there are lots of people who are groping and making do. It’s not like the search is over, but [my] feet are on the path. There’s something about this notion that I am where I’m supposed to be. People — the look I get when I say that is — I’ve affirmed something in them. That’s what they thought. It meshes with their experience of time and space with the music.

Other music-thanatologists do not use the language of call at all. Sile Harriss is a retired music-thanatologist.19 She pioneered for the field of musicthanatology in several settings: entering the first class, participating in early on-call rotations at St. Patrick Hospital, being a member of the faculty at the Chalice of Repose Project, and accepting one of the first two full-time musicthanatology positions outside of Missoula, at Providence Portland Medical Center in Portland, Oregon. As she reflects on her breadth of experience, she does not consider herself to be called. After a previous career in scientific and technical writing and editing, Harriss was teaching Scottish harp in Seattle when a former student told her about the School of Music-Thanatology. Although Harriss was not initially interested, she reconsidered and had a long phone conversation with Therese Schroeder-Sheker, who encouraged her to visit Missoula. Harriss flew there that afternoon. When she returned to Seattle, she placed an ad for housing in the Missoulian and made arrangements to store her belongings, before she even knew whether she would be admitted. She received her letter of acceptance within weeks of the start of school. Harriss never felt comfortable with the idea that music-thanatology was a vocation. She knows that this may be the result of her conception of call. She says, “I never have felt called to this the way I imagine people get called, spiritually. Which doesn’t mean that I haven’t been. It means that I have an image [of a call], and my experience doesn’t fit the image I have.” For Harriss, music-thanatology offered a chance to explore a series of new themes, which included music and the harp, helping people, and further education in areas that fascinated her. Once Harriss arrived at the school, she began to hear other students using the language of vocation and their call to music-thanatology. In the first months of classes, several students came to an understanding that the work was not right for them and left. Harriss was surprised by their reasoning. “And I can look back at the people in my class who didn’t stay, and left after the first six months, or the summer in between,” she says. “And they were really, really clear that they weren’t called to this. And I thought, ‘This is so funny, this is so weird. What do you mean, you aren’t called?’ ” The image Harriss uses of her own entry into the field of music-thanatology is that of

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falling into a hole: “I totally stumbled into this. It’s like it was a great, big, huge, wonderful, productive, dark, nurturing, rich, but unseeable hole that I fell into.” HEARING A CALL, FOLLOWING A CALL Music-thanatologists use a variety of images to describe their initial encounters with music and end-of-life care. It is a hole they fall into, a light that shines on them, a voice they hear in their heads, a feeling in their body. It makes them cry, drive thousands of miles, quit their job, and confront a terror of making music in front of people. All without any guarantees of compensation, transformation, or success in this new practice. The differences between the types of call that practitioners experience is relatively subtle, and there is no one who objected to the discussion of a call or vocation. In fact, those who were the least likely to use the word call still framed their comments in terms of this concept and left themselves open to the possibility that music-thanatology is their vocation. This likely has to do with a shared training at a single school that emphasized the work as a vocation. However, I would also suggest that this understanding of music-thanatology as a vocation also has to do with the practitioner’s constant witness of the dying process, and the resulting engagement with the human mystery of death and the attempt to find meaning at all stages of life. Before finding music-thanatology, these practitioners describe a longing for connection and service — a longing for music that is not performance, a longing for holistic ministry, a longing for healing beyond symptom relief, and a longing to offer a loving, compassionate presence to vulnerable people. In this new field, they found a way to draw closer to the questions and tensions that had simmered beneath their previous work, interests, or dreams. No longer having to choose, they could begin to integrate different parts of themselves: musician and clinician, medical and contemplative, witness and companion. The context of the dying process was vast enough to provide a space for the deep engagement in the very questions of their lives. While the particular vocabularies differ — business, music, psychology, religious life, medicine, and music therapy — each call story contains a journey: I had a longing to be of service, and music-thanatology became the form. The journey itself is a type of ritual, and once on the other side, music-thanatologists may find themselves changed and unable — or unwilling — to return to their previous state. Sile Harriss stated this the most clearly: “One of the things nobody ever told us is that over the years this becomes a way of life, it becomes a way of being. So it’s with us all the time. Just because I’m no longer employed and right now I’m not doing bedside work doesn’t mean I’m not a music-thanatologist.”

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Once they have begun to offer music vigils, they find they cannot stay away from this work. Once they have witnessed the dying process at the bedside, they cannot go back to a time when they did not contemplate these important, human questions of expressing love and relieving suffering through music at the end of life. For these practitioners, it is a deeply satisfying and engaging task that they expect will carry them to the end of their careers—and perhaps, to the end of their lives. NOTES Epigraph from Schroeder-Sheker, Transitus: A Blessed Death in the Modern World (2001): 67; italics in original. 1. Interview with Gregory Munro, September 4, 2008. 2. Schroeder-Sheker, “Music for the Dying: A Personal Account of the New Field of Music Thanatology—History, Theories, and Clinical Narratives” (1993): 41; italics in original. 3. Ibid. 4. Schroeder-Sheker, Transitus (2001): 68. 5. Telephone interview with Christine Jones, August 4, 2008. 6. Telephone interview with Barbara Cabot and Sharilyn Cohn, June 24, 2008. 7. Ibid. 8. Interview with Margaret Pasquesi and Tony Pederson, May 28–29, 2008. 9. Interview with Loraine McCarthy, Charlie McCarthy, and Sr. Vivian Ripp, April 26, 2008. 10. Telephone interview with Anna Fiasca, July 2, 2008. 11. Telephone interview with Annie Burgard, August 3, 2008. 12. Interview with Loraine McCarthy, Charlie McCarthy, and Sr. Vivian Ripp, April 26, 2008. 13. Telephone interview with Donna Madej and Betty Barber, June 29, 2008. 14. Interview with Judy Fay, September 9, 2008. 15. Telephone interview with Jeri Howe, October 11, 2008. 16. Interview with Lawrence Duncan, September 8, 2008. 17. Telephone interview with Jane Franz, June 30, 2008. 18. Interview with Margaret Pasquesi and Tony Pederson, May 28–29, 2008. 19. Interview with Sile Harriss, April 22, 2008.

CHAPTER 6

Z Integrating Music-Thanatology into Medical Institutions

People will either say “The music is beautiful” or “I don’t like that kind of music.” And what they’re really saying is “This was a good emotional experience for me” or “Don’t make me go there again.” Which is what is so powerful about it. We have this powerful tool and everyone is able to talk about it as music. —Dr. Stewart Mones, Medical Director, Hospice of Sacred Heart Music-thanatology has been integrated into the daily routine of medical settings across the country. In a hospital, a physician writes an order for music-thanatology, and anyone reading the chart later will find a note from the music-thanatologist. A hospice chaplain offers prayer with a family during a music vigil. A nurse spends several minutes describing the music vigil to a family; even though their grandmother can’t respond by speaking, she can still hear the music and feel them holding her hand. A hospice social worker calls the music-thanatologist and asks her if she can come to a patient’s home right away. As music-thanatology is introduced into different settings, more and more medical, psychosocial, and even marketing and philanthropy professionals interact with and utilize music-thanatology in their work. Until now, publications about music-thanatology have been written primarily by musicthanatologists themselves, and much of the information about the field has been available in popular media, such as newspaper articles. There are two main reasons for this. First, the field was started less than 40 years ago, leaving a short period of time for those outside it to discover, research, and write about it. Second, there are fewer than 100 trained music-thanatologists and fewer still who work in a full-time capacity, leaving a small pool of practitioners to provide data. Music-thanatology is a relatively unknown field and continues to require ongoing introduction and explanation for new staff, patients, and families.

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With the creation of full-time positions in hospitals and hospices around the country, it is an appropriate moment to ask music-thanatology’s closest colleagues how they understand and utilize the modality. The majority of my interviews were with nurses, chaplains, social workers, physicians, and other professionals, including administrators and a hospice massage therapist. Several had also been present during a music vigil for their own family member. Most of the interviews were scheduled by music-thanatologists whose institution welcomed this research project. The hosting music-thanatologist facilitated introductions and ensured a quiet environment for the interviews. Because of this methodology, there was some risk of the conversations being skewed toward the positive. However, this did not prove to be the case. In some cases, interviewees shared their initial skepticism about the efficacy of musicthanatology, or the claim that the music vigil offered medical care. At the same time, there was a consistent sense of the good that music can do for patients at the end of life. Interviewees described the feeling of calm and relaxation that a music vigil provides. They talked about the music’s ability to relieve suffering without relying on pharmaceuticals, and their own sense of relief when they can offer music-thanatology to patients and families who require care beyond what biomedicine can typically offer. Even those who were suspicious or critical of music-thanatology did not suggest that it caused harm. The underlying theme of these interviews was that the music was beautiful and beneficial. At an administrative level, there was strong support for musicthanatology. Those in leadership positions in the institutions I visited incorporated music-thanatology into their vision of patient care. They saw music-thanatology as representative of the compassionate care they offer to patients at the end of life. This strong support often facilitates the creation of a new music-thanatology position, which requires funding, new job descriptions, and extensive education of staff about ways to effectively utilize the new service. It is worth noting that some of the hospitals and one of the hospices I visited are Catholic: PeaceHealth Sacred Heart Medical Center1 and Hospice of Sacred Heart, both in Eugene, Oregon; Providence Portland Medical Center and Providence St. Vincent Medical Center, both in Portland, Oregon; and Providence Regional Medical Center Everett in Everett, Washington. These institutions may tie the role of music-thanatology to their mission. It is important to note that Catholic hospitals serve patients from many religious traditions, as well as those with no religious tradition. Although musicthanatology does not have a religious identity, it seems likely that the markers of the music vigil — harps, sung music, and the compassionate presence of a contemplative musician — fit comfortably within a Catholic context. The creation of a new music-thanatology position seems to follow a regular pattern. The first step occurs when a person in leadership at a medical institution hears about music-thanatology and develops a strong interest in it. After

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a period of initial research and reflection, this person makes a commitment to integrate music-thanatology into patient care. Questions of funding arise at this point, since music-thanatology currently is not reimbursable by insurance, Medicaid, or Medicare. Once a creative solution is found that allows music-thanatology to be added to the budget, the institution hires a musicthanatologist. An education and marketing strategy is developed to support its utilization. Finally, music-thanatology becomes integrated into the daily life of the institution, and ongoing education is offered about the new modality. Permanent funding follows in the form of reallocation of existing assets, donations, or grants. Although some of the specific elements differ, this is the pattern that has been followed at four institutions where music-thanatology has been practiced for at least five years: PeaceHealth Sacred Heart Medical Center in Eugene, Oregon; Midwest Palliative and Hospice CareCenter, in Glenview, Illinois; and Providence Portland Medical Center and Providence St. Vincent Medical Center in Portland, Oregon. These institutions are not representative of all practices. For example, Portland is also home to SacredFlight, an on call music-thanatology practice run by two music-thanatologists, which was described in chapter 5. Another example is the music-thanatology practice at St. Patrick Hospital in Missoula, Montana, which was started in 1992 by the Chalice of Repose Project. Without providing an exhaustive list, the examples that follow provide a brief glimpse into four institutions that have made a long-term commitment to providing music-thanatology for patient care at the end of life. This chapter will begin with a discussion of the start of music-thanatology in these locations, including the initial vision for the new modality, initial funding, structural and cultural fit, and sustainable funding. It will then discuss the observations and reflections of the professionals who work with musicthanatologists, both in these institutions and elsewhere. It will conclude with their reflections on the ways in which music-thanatology impacts both their ability to care for patients at the end of life and the culture of their institutions. PEACEHEALTH SACRED HEART MEDICAL CENTER, EUGENE, OREGON Robert Scheri, director of Mission Services and Spiritual Care, speaks passionately about the role of music at PeaceHealth Sacred Heart Medical Center in Eugene, Oregon.2 He has been at the hospital since 1989 and has been committed to using music to improve patient care throughout his career. He believes that music can help people cope with the experience of being ill and receiving treatment in a clinical setting. I’ve always had a sense of wanting to integrate various forms of music into healthcare, because people are in crisis, and the culture is dominated by a language that is foreign to the heart. It is dominated by sounds that are foreign

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to the places where we live our lives. And it’s filled with a kind of activity that leaves us as passive participants in our own lives.

Scheri has had a passion for end-of-life care since he began his career in chaplaincy, nearly 30 years ago. When he first heard about musicthanatology, he immediately saw a parallel between music-thanatology and his own field of spiritual care: “The chaplain learns to use his or her person as an instrument, to orchestrate, to be present, to hold, to touch into tender places. We use words and relationships. And music-thanatology uses the music and the instrument of the harp and voice.” Scheri wanted hire a music-thanatologist for Sacred Heart Medical Center, but he did not have the flexibility in his budget to create a new full-time position or program. With a small amount of resources both in his budget and from donations to Spiritual Care, he found a creative way to fund a small pilot program until permanent funding became available. “I had a deep sense that if you give people a taste of something, an experience of something, and they see value in it, then that will drive the development of the program,” says Scheri. While attending the National Conference of Catholic Chaplains, Scheri saw a presentation on music-thanatology done in part by a chaplain colleague and music-thanatologist, Sr. Vivian Ripp. Ripp and Scheri had worked together on the certification process for hospital chaplains, and he was familiar with her work as a chaplain at St. Patrick Hospital in Missoula, Montana. Scheri invited Ripp to apply for an open chaplain position at Sacred Heart Medical Center.3 Ripp was hired and began the position in early 1997. Ripp and Scheri agreed that eight hours of her work week would be devoted to music-thanatology. They began an intensive educational program for hospital staff at all levels. Initially, they thought that they would meet with resistance. This had been Scheri’s previous observation when new modalities, such as therapeutic touch, were introduced at the hospital. “People would think of it as soft fluff, nothing with meaningful value clinically, in terms of patient outcome,” he says. But Scheri and Ripp did not experience any resistance to music-thanatology. Although Scheri believes that their aggressive education program led to wide institutional support, he also accounts for the lack of resistance in more spiritual terms. Music-thanatology “has its own spirit, touches people in a way that it’s hard to somehow quantify,” he says. “People get it, and they appreciate it and they value it.” After the program began, Ripp found that she needed help meeting the number of referrals. She learned that Loraine McCarthy, who shared her story in chapter 5, was in the process of completing her music-thanatology training and preparing to return to her home in Eugene. Ripp called McCarthy and invited her to volunteer as a musicthanatologist at the hospital: “I can’t pay you anything, but would you like to pioneer with me?” McCarthy gave an enthusiastic, “Yes!”4

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Sacred Heart Medical Center eventually began to receive donations from grateful patients and families. Scheri was able to add additional hours into his budget, and he eventually hired a half-time position. Later, the hospital partnered with Hospice of Sacred Heart, which agreed to fund a half-time position. The hospital and hospice now support two full-time positions, filled by three music-thanatologists. In addition to music-thanatology, Sacred Heart Medical Center has a second music program called Sounds for Healing. This program’s credentialed employees offer music to patients who are in recovery, and their volunteer musicians offer music in the hospital’s common areas.5 Scheri believes music-thanatology has altered the culture of the hospital and the care it provides at the end of life. He points to studies that indicate dying patients receive less frequent care from physicians and nurses. Since music-thanatology was introduced, Scheri has observed staff drawing closer to the dying process. And what we noticed is that when we started bringing music-thanatology into the patient rooms, all of a sudden, the nurses would say things like, “Would you leave the doors cracked while you’re playing?” Or the social workers would have reason to be hanging out around the room. And they would . . . go into the rooms after we left, more often, because they wanted to be part of that care that was just offered. So it started to change the conversation. It started to change where medicine had no goals around being with people who were dying. All of a sudden they started talking about making them more comfortable . . . We noticed that rather than avoiding the care, they wanted to be a part of something that they perceived as tender, loving, and beautiful. [It] fulfilled a deeper need they had, as healers.

Strings of Compassion, the music-thanatology program at Sacred Heart Medical Center, is now more than 12 years old and has begun to host student interns. In addition, the music-thanatologists and their local colleagues have produced two CDs as a fund-raiser for the program. Scheri was correct that the modality would find both cultural and institutional support once it was established at the hospital, where it continues to be highly valued by staff, patients, and families. PROVIDENCE PORTLAND MEDICAL CENTER AND PROVIDENCE ST. VINCENT MEDICAL CENTER, PORTLAND, OREGON Adrienne Simmons, director of Planning for Providence Health and Services in Portland, Oregon, learned about music-thanatology around 1999.6 Providence Health and Services learned that the Weigand Foundation was interested in funding a partnership between the Chalice of Repose Project and a health care organization in order to establish musicthanatology outside of Missoula, Montana. The two organizations applied

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for a grant. The grant proposal was accepted, and the two Portland hospitals began to plan for the new positions. Providence Health and Services was committed to improving the quality of end-of-life care. Simmons believed that music-thanatology would provide additional support to patients and families. “Most times, when people come to the hospital, they’re hoping for a cure.” But when a cure is not possible, Simmons said, “there’s a lot of healing that can be done. I think musicthanatology is a way to provide that healing.” Providence Portland Medical Center and Providence St. Vincent Medical Center spent two years planning for the 2001 arrival of the two practitioners. The hospitals determined that music-thanatology would be implemented as part of the pastoral care program in each hospital. They developed a communication plan and identified key constituencies for support and education. Simmons echoed others in highlighting the importance of the individual that fills a new music-thanatology position. Because of the lack of knowledge about music-thanatology, the individual practitioner’s fit within the institution was essential to the success of the new program. In particular, humor facilitated the transition. Simmons remembers that Laura Lamm, the musicthanatologist hired at Providence St. Vincent Medical Center, used humor to respond to one physician. My favorite story with Laura was one of our intensivists in the ICU at St. Vincent was . . . dubious about this whole music-thanatology thing, and joked with her and said, “Well, [do] you know how to play ‘Turkey in the Straw’?” And then it wasn’t too many weeks later, and he was coming down the hallway and she was playing “Turkey in the Straw” on the harp. And I think that kind of thing, in her joyful way . . . was a good style for introducing a new modality.

When the partnership between the two hospitals and the Chalice of Repose Project ended, the directors of pastoral care offered support for musicthanatology, and the hospitals added it to the budgets of the Pastoral Care departments, where they continue to be located. MIDWEST PALLIATIVE AND HOSPICE CARECENTER, GLENVIEW, ILLINOIS Midwest Palliative and Hospice CareCenter is located in Glenview, Illinois, and serves patients and families in northeast Illinois. Its chief medical officer, Dr. Martha Twaddle, heard Therese Schroeder-Sheker speak about music-thanatology in 1993.7 She had an immediate emotional reaction, saying she “turned to mush.” She said, “I was totally captivated on a personal level.” Twaddle corresponded with Schroeder-Sheker over e-mail in order to learn more about music-thanatology but did not immediately implement it at Midwest CareCenter. In 2002, Twaddle was surprised to

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receive a phone call from music-thanatologist Margaret Pasquesi, who had grown up nearby. Twaddle knew her from her time as a medical intern at Evanston Hospital, in Evanston, Illinois, where Pasquesi was a ward secretary. Twaddle remembered her as “the most incredible young woman” and laughs as she recalls Pasquesi’s appearance, which she describes as “punked and pierced.” She and Pasquesi had deep philosophical conversations late at night when Twaddle was on call at the hospital. Pasquesi and her partner, Tony Pederson, made a presentation at Midwest CareCenter, following their graduation from the School of MusicThanatology. Twaddle recalls that their presentation “resonated deeply with us. We went to our then CEO and said, ‘We’ve got to do this.’ ” Twaddle hired the two music-thanatologists to work as a team, seeing patients together. She believes that music-thanatology can be used to teach about hospice, and in addition to their work at the bedside, they participate in the organization’s events for community education. Mary Sheehan, Midwest CareCenter’s president and CEO, felt as though music-thanatology needed to be established initially before it could receive more substantial funding. “We decided to make a commitment, with the foresight to believe that it was something we could get funded,” says Sheehan. She believed that if the hospice differentiated itself with this quality intervention, it would find funding. Sheehan also saw music-thanatology as an important marketing tool and notes that Midwest CareCenter was the first hospice in Chicago to offer it: “I think we were the first in the market in Chicago with this kind of service. And it’s a very competitive market.” She believes that having music, which includes both music-thanatology and music therapy, has helped to distinguish Midwest CareCenter. She notes, “We’re the hospice with the music.” Twaddle concurs that music is a strong part of their identity: “It really defined us as quality. And very holistic, which was the number one.” Twaddle believes that it has affected the staff. “I think we’ve had staff come here to work because we’re the program that has music,” says Twaddle. Sheehan and Twaddle were correct that music-thanatology would find funding once it was established. Anne Rossiter, the senior director of Philanthropy for Midwest CareCenter, reports that they have received a number of large donations to support the hospice’s Music Care Services, which includes both music-thanatology and music therapy.8 For example, after a long-term donor’s mother died, the donor left a charitable trust and gave $225,000 to Midwest CareCenter; $100,000 was designated for Music Care Services. After two years at this level, the entire gift was given to Music Care Services. For two years in a row, they also received the first grant ever given to a hospice by the Illinois Arts Council. The hospice utilizes unrestricted funding from donors for Music Care Services. Their outreach focuses on the clinical framework of music, particularly the measurable changes that can be observed, for example, in respiration

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and heart rate. They are currently planning a large fund-raiser specifically to support Music Care Services. Rossiter sees these types of events as a way to educate the community about the care that hospice can offer. Twaddle sees the value of music-thanatology not only in the care that it offers to the patients, but to the family members as well. She points out that this intervention, like music therapy, is unique in its capacity to reach both patients and family members at the same time. “I think that’s fascinating,” says Twaddle. “No other intervention we use has that effect. Yes, we can make somebody’s pain better, but we can’t directly influence Mom, by the therapy. Music therapy is the same way. This has a really powerful emotional effect on families.” When the music-thanatologists first began at Midwest CareCenter, they collaborated with the music therapists to educate staff members about the two fields. Today the two modalities function as a single department collaborating with medical and psychosocial staff to provide patient care. Music Care Services provides ongoing education about the referral indicators for both modalities, so that staff can make referrals for patients. They also regularly participate in community education. CHANGING THE CULTURE OF END-OF-LIFE CARE Conversations with physicians, nurses, chaplains, and social workers raised a number of questions about relief of suffering at the end of life. What is a good death? What happens when biomedicine is unable to cure a disease and must begin to focus on the end of life? What is the role of emotion, spirituality, and intimate relationships in compassionate care for the dying? The interviews focused on a number of different ways that music-thanatology engages with these questions, and the resulting conversations. What is the role of beauty and intimacy in medicine? Does music-thanatology provide medical care? What about emotional or spiritual care? How does hiring a music-thanatologist influence or change the culture of an institution? Can music-thanatology change the way people die? Although the professionals I spoke to came from a variety of backgrounds, their responses seemed to relate more strongly to the culture of their institution and their individual personality than to their identity as physician or chaplain. Those with a personal interest in the medical possibilities of music or the spiritual components of end-of-life care were more likely to respond to music-thanatology through these lenses. Some of the perspectives are probably the result of ongoing education from a single music-thanatologist who is the only practitioner, or one of a few practitioners, in that institution. These conversations ultimately explored three core themes. The first focused on the notion that at the end of life, traditional strategies of biomedicine, such as medication, become limited and often fail to address the

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spiritual and emotional questions that arise as patients confront their own death. Medical professionals sometimes find that they do not have the time to make the more intimate connections they know that dying patients and their families need. The second theme that emerged was the consensus that musicthanatology can fulfill this need for connection and meaning making. By providing sacred space for patients and families, it operates within the boundaries of the medical institution while delivering the more elusive qualities of beauty, rapt attention, and love. This moves and inspires professionals from a variety of fields, and they express a gratitude and appreciation for this type of patient care. They are relieved when they are able to make a referral to music-thanatology, particularly when they come to the end of their own treatment options and see that the patient and family continue to suffer. Finally, music-thanatologists’ colleagues feel that music-thanatology impacts the culture of their institutions. They observe a greater attention to end-of-life care, and they appreciate the impact that the music vigils have on the way people die. They respect the work of the music-thanatologist and are grateful to have something so special to offer to the people they care for. THE LIMITS OF MEDICATION AT THE END OF LIFE Professionals in medicine, psychosocial, and spiritual care discussed a medical culture that too often relies on prescriptions. Seeing patients suffer in areas outside the scope of pharmaceuticals made them long for new solutions. Physician Gary Lee, a former hospice medical director at Hospice of Sacred Heart in Eugene, Oregon, put it this way, “We’re really dependent on biotechnology, but at some point, the drugs really fail you . . . You have to have the courage to admit that.”9 In addition to the limits of pharmaceuticals, there are limits on time. Physician Howard Lazarus is a pulmonary and critical care medicine specialist at Providence St. Vincent Medical Center in Portland, Oregon. He says, “As a physician, I like to think I have a high level of compassion and empathy and take the time to address patients’ and families’ concerns. But even with an extended consult, I’m a fleeting moment, and then I’m off to the next disaster or crisis.”10 Lazarus notes that nurses are with patients for many more hours during the day. But nurses are not always able to offer the kind of care and attention to their patients that they would like to. One nurse said that she tries to take “tiny opportunities” in her work day to offer her patients a closer connection. Often I don’t feel I’m in a place where I can give care that’s meaningful . . . Yes, I can pass meds in a somewhat timely fashion but I feel like on a lot of days the most important thing that I can do is actually make a connection with

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somebody. And often the 15 phone calls in five minutes and just the facts of being in a large institution in current Western medicine, mean that that’s really hard to do.

In some cases, physicians and nurses are also limited by the type of care that patients and families are willing to accept. Dr. Stewart Mones, hospice medical director at Hospice of Sacred Heart in Eugene, Oregon, believes that music-thanatology is a powerful tool that brings people into an awareness of their emotions. I look at music-thanatology as the thing I fall back on when I know everything else is going to fail. There’s some very deep emotional angst and pain that is not going to go away. The only approach is to have people to sit with it, because it’s been there for a long time, sometimes as long as 50 years. Patients and families have very complex ways to avoid feeling that emotional pain. It’s interesting to me that people often turn to the doctor for a medication for this pain. When I look at medications for deep emotional pain, they just seem powerless.11

Mones has moments when he also feels powerless. He has never been in a music vigil and wonders whether attending one would give him an opportunity to reflect on what it means to be a physician for patients at the end of life. He honestly addresses the challenges of his role as a physician: “It’s the conflict that I think all doctors are in, in addressing end-of-life care. We made this promise to keep people living in a healthy manner, and to recognize and remind ourselves that end-of-life care is consistent with all that takes a lot of work.” Mones reflects on the possibility of a good death, a popular concept that he believes has real limitations. He notes that a good death is not always possible, and that music-thanatology has helped him to accept emotions as they are, rather than attempting to change them. He doesn’t necessarily believe that a good death involves resolution. Instead, it’s taught me about sitting with emotions without resolution. That’s sufficient. Something transforms. I notice it in the families. I’ve given up the need for a good death. It’s just that having expectations is unhealthy. Seeing the raw emotions, and being with it. It’s a transformation.

Music-thanatology can sometimes offer the time and intimacy that other professionals feel they cannot. The nurse whose days are so busy pointed out the important relational qualities of the music vigil: “The connection that I’m not always able to make with patients, that’s not an optional part of [the music-thanatologist’s] therapy. And in that [the music-thanatologist] gets to a level that the nurses often aren’t able to, with the patients. And that’s a level that [the patients] need to get to for healing.”

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In addition, the music vigil provides a peaceful environment. Nancy Romanchek, a nurse with Midwest CareCenter, in Glenview, Illinois, notes that she learns a lot from the two music-thanatologists about setting the stage for a “peaceful death.”12 She likens it to planning a party, when you “set the table, and you order the food” before the guests arrive. The music-thanatologists do something similar when they prepare for a music vigil. They enter the room in a grounded way, make eye contact with the patient, and speak gently. They sometimes lower the lights in the room or close the blinds. “It’s almost like they just create a feeling of intimacy in the room as they begin,” Romanchek says. For some families, music-thanatology relieves their anxiety around the use of medication at the end of life. Rose Jackson is a registered nurse and works for inpatient hospice and palliative care for Kaiser Permanente at Providence St. Vincent Medical Center in Portland, Oregon.13 She jokes that she would not want music-thanatology at the end of her own life: “Truthfully, I tell people, I don’t want a harp. I want Tom Petty.” But she is deeply committed to music-thanatology and makes regular referrals, particularly when she notices patients and families expressing a lot of strong emotion. She knows that many patients and families are sensitive about the use of morphine and may have a misconception that pain medication is the only thing that hospice provides. When she offers music, it may reassure them that there are many approaches to pain management. She believes the music provides emotional support and helps patients and families to feel cared for. “When death is happening people don’t really know they can survive this. They don’t know that they’re ever going to feel better,” Jackson says. “I think what musicthanatology does is give them a glimpse of how it’s going to be, how they’re going to feel better.” Music-thanatology can provide relief not only to patients and families, but also to medical staff who work in this environment. Physician Howard Lazarus makes a special note of the environment created by the music. “I think it can be calming or comforting to the patients. I think it can be calming and comforting to family and health care providers,” he says. “It changes the air around the room when the harpist is here. It brings a sense of serenity to the clinical situation, where everyone can stop and take a deep breath.”14 MUSIC-THANATOLOGY AS MEDICAL CARE In some institutions, medical professionals utilize music-thanatology to provide symptom management in place of medication, or notice a decrease in the need for medication as a result of a music vigil. Lazarus observes, “I think it can be a type of medical therapy. I’ve seen patients’ blood pressures come down. I’ve seen heart rates slow down. I’ve seen levels of anxiety come down . . . [ W ]e administer many expensive medicines with potential side effects that do the same thing.”

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Physicians sometimes make an even stronger case for the medical use of music-thanatology. Physician Martha Twaddle, medical director of Midwest Palliative and Hospice CareCenter, believes that music-thanatology is “definitely a medical modality.”15 For example, she has seen a decreased need for medication on the hospice’s inpatient unit when patients experience agitated delirium. Twaddle made this observation during a retrospective audit. The research fellow working on the project came to her with startling data. The number of cases of therapeutic sedation on the inpatient unit dropped by 75 percent in 2003, the year that the two music-thanatologists, who spend much of their time on the unit, were hired. The decrease has persisted. Twaddle is quick to point out that there are other confounding factors to the data, and she has not been able to isolate the effects of the music vigil. But she remains convinced that patients who receive a music vigil in response to agitated delirium are less likely to require therapeutic sedation. When I ask Twaddle to hypothesize specific reasons for this decrease, she speculates that the patient is quickly calmed by the music and never gets to the point when therapeutic sedation is necessary. Agitated delirium is often associated with imminent death, so patients who are admitted to the inpatient unit are “getting very close.” The staff on the inpatient unit use the traditional medication along with music-thanatology, which soothes the patient, and “we never get to therapeutic sedation,” says Twaddle. “We don’t have to go there, because they quiet.” Other professionals concur that music-thanatology can be used in lieu of medication. One nurse I spoke with tells patients and families that musicthanatology is “another way to manage symptoms, but without medications.” And I think of everything I say, that’s the most appealing to people. Because most people would like to avoid the side effects of medicine to start with. [Music-thanatology is] something that no other part of hospice does, because its connection with the patients is so different from what we offer as medical people.

This nurse feels as if music-thanatology puts her patients “on the road to dying.” When patients seem stuck, music-thanatology helps to “move them past the blocks.” For this nurse, music-thanatology “gives me something else to offer when I don’t know what to do. And to me that’s a huge relief, to be able to say, ‘I’ve done everything I can, there’s something more.’ ” Although she initially felt that music-thanatology was “kind of a fluff, something extra,” the patients and families themselves taught her that it worked. Because [the music-thanatologists] are clear [about] what they do. Their charting reflects what they do. Their charting reflects the effect of what they do and what they’re trying to gain. But mostly it’s education . . . They just taught us what the point of it was. And we could see the results. And certainly the

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family’s feedback was the most important. And the patients. Because they told us it worked.

A nurse named K.C. makes a referral for music-thanatology when patients have pain or anxiety. She says, “It’s great for pain. I have seen patients just relax. So I think I would mostly suggest it . . . to people that just seem very anxious who need something to calm them down that isn’t more medication. And it’s for families too.” The conceptualization of music-thanatology as a medical modality is not limited to physicians and nurses. One chaplain I spoke to describes music-thanatology as a medical intervention when she introduces it. She explains that the practitioner will measure pulse and respirations and assures families that the music-thanatologist will follow the patient’s lead. At the end of life, there are not many other opportunities for the patient to lead a situation. The chaplain points out that “at this time in their lives, that’s about the only thing they have control of, and that they’re actually leading . . . I think it gives the loved one peace of mind that this is something that we can still do for them.” Pam Simon, a social worker and the supervisor of the Wholistic Care Team at Hospice of Sacred Heart in Eugene, Oregon, notes that musicthanatology, as well as massage, offers a reminder that hospice is “not a medication regime.”16 The Wholistic Care Team she supervises includes music-thanatologists, massage therapists, chaplains, volunteers, and bereavement staff. Simon’s goal in working with both music-thanatologists and massage therapists was to give them a place “within the medical model and health care setting.” In order to do so, they developed a referral form that lists the “risk indicator” for massage or music-thanatology. These include agitation, restlessness, sleep disturbance, or family involved in a long process of vigiling. Before and after a visit, the patient is asked to evaluate his or her comfort level on a 0 –10 scale. Simon believes that music-thanatology is “on a par with any pharmaceutical intervention that we use. I mean, certainly there’s physical pain, and physical pain that is receptive to pharmaceutical intervention. But whenever I’m in physical pain I’m also in existential pain because I don’t like to be hurting.” On the other hand, some professionals I interviewed felt that musicthanatology should not be identified as a medical intervention. One chaplain expressed a passion for music-thanatology and utilizes it in his work. However, he is skeptical of the claim that music-thanatology is scientific. He believes that music-thanatology, like chaplaincy, exists within the realm of the spiritual and emotional, separate from the world of empirical science. He says, “For me, music is tapping into the mystery of the cosmos. I believe God is very musical . . . I get impatient with the trying to make it into a science rather than simply letting the mystery be the mystery.”

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Another concern involved the possibility of music-thanatology having a religious identity. Nurse case manager Bonnie Roter of Midwest Care Center shared her initial impression that harps related to Christian imagery.17 Because she is Jewish, this was “a little barrier” at first, but she now realizes that music-thanatology does not have a religious identity. She sees something similar when she speaks to Jewish patients who believe that chaplains are always Christian: “There’s a lot of miscommunication, misinformation out there about religion in general and chaplaincy. This I think falls into that same category of this is a nondenominational kind of experience, nonreligious.” Other medical professionals were initially skeptical about musicthanatology but later became strong supporters. Mark Newson is currently a Nursing Administrative Supervisor at Sacred Heart Medical Center, but was previously a manager at Hospice of Sacred Heart in Eugene, Oregon.18 He reviewed the first proposal for music-thanatology at the hospice. Sacred Heart Medical Center approached the hospice, hoping to collaborate and expand the music-thanatology practice. Because of his role as a manager, Newson was skeptical of a program he saw as “untested, unproven, not revenue-producing, [and] not billable.” However, once he experienced the music himself, he was struck by the level of relaxation and emotional expression that the music helped to inspire. There have been multiple testimonies over the years, comments from patients and families that this was a ground-breaking venue for them to just let go of what they had bottled up and never had the right avenue for it to be released. Now that’s pretty profound in my book.

Newson also mentions the role the music can play for hospice staff, who must manage their own emotions about the dying process. And I think for the clinicians who have been there for vigils, myself included, that it becomes a very emotive piece. Not only to see what transpires for the patients and their family members, but I think for many of us, it triggered some of the pent-up emotion that just comes from the nature of our work. Rather than driving down the road after a visit and just letting it go, here’s a place that just pulls it out of you by its sheer strength.

Newson believes that many of the initial critics of music-thanatology at Hospice of Sacred Heart changed their mind about the modality after experiencing it. I think about the staff and I think about the naysayers and the skeptics from the get-go, and some of those who were most vehement in the sense that this was not going to work are probably some of the strongest supporters now. Because

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they have seen and experienced the power that comes with it. Whether it’s been through a series of consistent visits . . . or simply one or two at critical points in a patient’s life, they know now what it brings. And see that as supportive of what they’re trying to do. Areas that they can’t tap into through medicines seem to just get cut through with the music and the song.

CREATING SACRED SPACE It is rare in the contemporary American culture to experience a musical form that deals so particularly with death, and whose purpose is to accompany people through the dying process. This unusual modality requires an unusual vocabulary, one that is not often heard in biomedicine. The most common response I heard to the question of what music-thanatology does is that it creates sacred space. Both medical and psychosocial staff used the term sacred space regularly, easily, and without much explanation. This raised several questions about the role of the sacred in medical institutions. What use do medical professionals make of sacred space? What allows for a high level of comfort with this term? It may be that sacred space is a way to express a feeling of reverence without invoking a particular spiritual or religious practice. It may also be that music-thanatologists themselves use the term and have educated their colleagues in this vocabulary. Janelle McCallum, the vice president of operations at The Denver Hospice calls music-thanatology “one of the sacred pieces.”19 She believes that it is an important component of the sacredness of an ending, and the marking of an ending. “[I]t’s a reminder that the transitions that people are struggling to go through anyway might actually be eased with this work. Because it kind of pulls us back together. It connects the physical, the emotional, the spiritual. And I think when we’re out of balance we’re not as connected to those pieces,” says McCallum. Social worker Pam Simon believes that music-thanatology offers “sacred space,” and an opportunity to rest from the urge to do something. It provides a sacred space. It creates a sacred bubble . . . wherever they are. Whoever is inside that bubble is experiencing something safe and sacred and relaxing and quiet . . . In general, I think that the music fills in for people, and yet it’s very safe and protective. It allows people to redirect their obsessive thinking and worrying. The music draws a focus that’s really necessary . . . When their loved one is dying, there’s this overwhelming need to do or help. Do something. Even though [music-thanatology] gives them a break from doing something, they’re still doing something.20

One nurse I spoke to finds that the presence of the music reassures her that patients are well cared for during her busy work day. She knows that “something sacred is going on.”

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And as I’m running through my day, and my phone is ringing off the hook, and before I can do something three people have called me . . . asking me to do it, and the insanity of working on a really, really busy floor, I feel like there is a little corner somewhere if [the music-thanatologist] is there, where there is peacefulness, where there’s something really wonderful going on.

For some, the sacred space is tied to relationships. Dr. Woodruff English, a palliative care physician at Providence St. Vincent Medical Center in Portland, Oregon, framed his remarks about the dying process in terms of relationships with people who are no longer able to communicate with words.21 Music-thanatology, he believes, “gives us another tool to communicate with patients who neurologically aren’t able to communicate.” According to English, patients who have brain function failure can become isolated, and “this connects them.” Dying is about relationship. And so if we can establish a relationship with somebody who’s dying, we’re truly ministering to that person. Musicthanatology is a way of communicating with people who don’t use words or organized thought. We can maintain relationship with the individual through music.

Although family members have different needs, music-thanatology can give them sacred space and provide them with a ritual that helps make the transition in their relationship with the dying person. Several medical staff did not necessarily use the term sacred space, but instead spoke of the spiritual elements of the music vigil. When physician Gary Lee was asked if he believes music-thanatology offers medical, spiritual, or emotional care, he spoke about beauty.22 As far as a medical intervention, it sounds as if there is a place for it. Personally, I’m more impressed with the spiritual component. At least that’s where I’ve seen it. Music enters a place that isn’t necessarily all frontal lobe . . . To add a musical element, I think there’s something very hopeful about that. When you’re without hope, you’re really sunk. So I think it adds a sense of hopefulness. And why? Because it’s still beautiful, still reaching us in ways that words can’t.

Wendy EagleWolfe, a clinical social worker at Sacred Heart Medical Center in Eugene, Oregon, believes that music-thanatology helps families see that the hospital cares about them. She defines healing as “to be made whole” and feels that music-thanatology is a type of healing that can help to make things whole.23 According to EagleWolfe, the patients require less pain medication, families can express emotions, and the staff is supported— all through musicthanatology. When I ask her what specifically is so helpful, she says that it

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is the nonjudgmental nature of the beautiful music, which allows people to “sit back and just rest with whatever is going on.” The theme of creating sacred space was highlighted throughout conversations with chaplains. Chaplains may be the closest colleagues to musicthanatologists within a pastoral care department or a hospice team. Sometimes chaplains make visits alongside a music-thanatologist and offer a blessing, ritual, or sacrament during the music vigil. In addition, music-thanatologists are sometimes located, funded, and supervised through a hospital’s pastoral care department. In spite of the location of some music-thanatologists within pastoral care departments, previously the nearly exclusive realm of religious professionals, the chaplains I spoke to were flexible and inclusive in their welcome of the modality. While chaplains may believe that music-thanatologists offer spiritual care to their patients, one went a step further to say that she believes musicthanatology can at times be the primary source of spiritual care. She compares the music-thanatologist’s use of music with the chaplain’s use of language. [Chaplains] do it by inviting conversation or helping the patient articulate verbally their spiritual questions, or what they are struggling or saddled with. And music-thanatologists do it through music. So they create the environment for healing to happen through music. They also invite process. It’s just not always verbal process, although it can be. But it creates the space for the patient to have the time to sit with what is real for them, what is internally happening within them, and this allows healing to happen. There are times where verbalizing and talking isn’t helpful to the patient.

Not only does the music provide something different from language, it does not require the patient or family to respond verbally. Chaplain Theresa Helldorfer of The Denver Hospice, feels that music removes the pressure of finding words to describe what is happening. “I think that with words people are expected to respond in words, and many people don’t have words for their experience,” she says. “Music, however, takes the pressure off, because you don’t have to have words to explain it afterward. You just can . . . be held in the moment.”24 Chaplains and other referring sources face the challenges of explaining a new experience of music — one that is unlike a concert or background music. One chaplain described this as the “baggage” that both chaplains and music-thanatologists share. Chaplains have the baggage of religion and must provide ongoing education around the assumptions that they require patients to be religious, or to complete certain rituals at the end of life. This chaplain believes that music-thanatologists carry the baggage of “engaging with the music on a surface level.” According to this chaplain, when people refuse a music vigil because the patient is unresponsive or has trouble hearing, they miss out on the possibility of a deeper experience.

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It misses the whole aspect of the spiritual nature of music-thanatology and the healing that can happen. The spirituality of music-thanatology is just lost in that. It’s almost to the point that I don’t even want to say that it’s music. There’s something else that is happening there, not just music. Music is the mode of delivery for what’s really happening.

According to this chaplain, what’s really happening is “grace, or that mystery of the sacred.” The creation of sacred space is utilized not only in a music vigil but may be expanded to include more formal ritual. A chaplain at Sacred Heart Medical Center, Fr. Kenneth Olsen, worked with music-thanatologist Sr. Vivian Ripp to develop a ritual of anointing that can take place during a music-thanatology visit.25 He calls this the “Anointing of the Senses.” In the Catholic tradition, there is a sacrament called the anointing of the sick, which is offered to anyone who is sick or at the end of life. Olsen heard a radio show in which a speaker said that historically, Catholic priests anointed the senses in order to close them to the earthly world and open them to the next world. Olsen incorporated this into an anointing ritual to “celebrate life and remember.” When I work with people now I tell them everything we receive in this life, we receive through the senses . . . And we go through symbolically and ask God to close them to this world and open them to the next. And instead of just the priest doing it, and as we go through the body, I ask different members of the family to do different parts of the anointing, as we celebrate each sense, we remember and we celebrate.

During the anointing in the music vigil, holy oil is placed on various parts of the patient’s senses, such as the eyes and the ears. Olsen relies on the music-thanatologist to respond musically to the individuals present and the movement of the ritual. He believes that the music is an essential part of the anointing ritual, and the flexibility of the music vigil allows for the transformation of the experience of dying. The music-thanatologist can determine when to gently lead with the music and when to gently follow. The result is a transformation of the dying process into “what it should be,” says Olsen. “Certainly by our faith. It is a transition. It is a passing through a portal. And not this horribly tragic dissolution that so many people in this society seem to see it as.” Olsen feels so strongly about the role of music-thanatology that he identifies it as a sacrament. He comes from the Orthodox tradition, Eastern Catholic, which has only had the traditional seven Catholic sacraments for the last hundred years. In the case of music-thanatology, he believes that the ritual allows those present to increase their awareness of the divine: “I believe that when a music-thanatologist plays, they are engaged in sacramental

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activity.” He says the “beautiful part about all sacraments” is that “we have no idea how it works.” We increase our awareness of the infinite and eternal presence of the divine that we live in. Our attention is more focused . . . more attuned. We resonate with the divine. And I think that’s what music-thanatology is about — it’s hitting upon that concept of resonance, and we resonate with the same vibration of the divine, if you will. They bring the two together with that resonance.

The sacrament of “Anointing of the Senses” was the most involved and articulated ritual that chaplains and music-thanatologists engaged in together, but other chaplains noted other types of combined visits. Rev. Gina Volpe of Midwest CareCenter wishes that she could always have a musicthanatologist present when she administers the sacrament of the sick.26 She believes that the music provides a pace, a rhythm to the delivery of the sacrament: “I have to say certain words . . . so I have to have a voice. But the harp is giving a different voice. They’re giving me the rhythm.” One chaplain calls on the music-thanatologist to attend rituals or blessings that she offers with patients and families. Another mentioned that the music-thanatologist she works with is often invited to play for patient memorial services. In addition to sacraments, music-thanatology can also be utilized with massage. Russell Ramo is a hospice massage therapist who works with Hospice of Sacred Heart in Eugene, Oregon, and he sometimes offers massage during a music vigil.27 When he speaks about his massage practice, many of his remarks echo those made by music-thanatologists about their work. He talks about how there is no such thing as a “cookie-cutter” massage, and how the patient is in charge of everything that happens. He does not bring a massage table when he works with hospice patients, instead offering massage wherever they are, whether it is in a nursing home or hospital bed, or sitting in their own living room at home. He gently encourages each patient to share the ways they hope massage can help them. He has worked with Hospice of Sacred Heart for 10 years. A few years ago he became involved in end-of-life care for his own mother and was deeply concerned with some of the interactions he saw in the medical community. This renewed a personal vow for his own work: to see each person as someone’s mother or father. One of the tricks he uses to keep himself present when he notices his mind drifting is to think, “Oh, this is my mother in front of me.” Ramo believes that the combination of music-thanatology and massage provides more than either could offer alone: “It feels like for us to work together is a big amplification . . . of what each of us could provide individually to the patient and their families or whoever is around in the house . . . everyone usually feels the peace . . . palpably.” He sees that the music is “a very spiritual guide for the mind and the ears so that that patient’s really guided much more rapidly into that place than if I’m working alone.”

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Although Ramo is not a musician, when he works with the musicthanatologist his experience is that he, the music-thanatologist, and the patient “somehow are all playing music together.” He believes that if the music and massage can create an environment that allows the patient to access an inner calm or inner spiritual place, then the body will follow. Because everyone who is on hospice has a body that is “breaking down, and it’s not going to improve from a medical point of view,” he sees his own mission while working with a music-thanatologist “to be okay with the process that’s happening, that the body is dying . . . This life is coming to an end.” CHANGING THE CULTURE OF THE INSTITUTION WITH MUSIC Many of the interviewees believe not only that music-thanatology creates sacred space and offers a medical modality that can supplement or replace medication — they also believe it has the power to transform institutional culture. As Martha Twaddle and Mary Sheehan noted about Midwest Palliative and Hospice CareCenter, music can differentiate an institution and create a holistic environment. Staff members may even choose to work there because of the music. Mel Pyne is the CEO and chief mission officer at PeaceHealth Oregon Region, and he oversees the Sacred Heart Medical Center in Eugene, Oregon.28 He has attended music vigils and sees music-thanatology as “an integral part of our healing and compassionate care culture.” He believes it brings a spiritual and meaningful dimension to the care offered, both through the music and the environment it creates. One chaplain believes that music-thanatology has changed the way people die in her institution. It just changes [the staff’s] whole dynamic and how they are in relationship for that moment as they engage with the music. It changes how they are in relationship with other people. And that’s the part . . . where there’s been a culture shift. Because you can do all these comfort measures, and not change the relational aspect of your care . . . And so I hear nurses asking things, and physically moving in a different way and paying attention to different things, in a way that I don’t think that they would necessarily do. But the music invites that space to do that.

David Waggoner, a chaplain at Sacred Heart Medical Center in Eugene, Oregon, put the cultural change in a larger historical context.29 Waggoner believes that music-thanatology is “so different than anything else that’s happening to [patients] in the hospital room.” He calls it “an oasis of calm in the midst of the storm of death” and says that “it really is transformative for the environment.” Waggoner grounds the contemporary use of music-thanatology in medicine’s historical roots and in recent innovations in end-of-life care. After the

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Civil War and into the 20th century, medical care increasingly emphasized antiseptics, sterility, and science. Religion and modern medicine began to be seen in opposition to one another, and all too often spiritual care was pushed out of the hospital. But throughout the 20th century, partially through advances in medicine and partially through the development of a new generation of spiritual practices, the concept of a good death evolved. According to Waggoner, even chaplains have to be trained in the specifics of what a good and dignified death can be like: “First you have to understand that death is a process and not an event. That’s a big paradigm shift. And understanding those processes you have to gain enough experience so you see how people, how families go through the process.” In Oregon, end-of-life care is made more complex because of the Death with Dignity Act, which allows patients to request physician-assisted suicide. Because Sacred Heart Medical Center is a Catholic hospital, they do not offer or participate in physician-assisted suicide but instead make referrals for patients who request it. Waggoner believes that music-thanatology was an important force in the hospital’s cultural shift toward improved end-of-life care. So we have to think about dying differently. So if you take the phrase “good death” and then say “Death with Dignity” and you put those together how do you do that in this context so the person who is dying and the family all experience a dignified death? And so once you have that concept, you can then begin to build an environment to produce that, then we can begin to make significant progress. And at least, for us, music-thanatology in a sense became a cornerstone for the whole shift in the hospital.

At the same time that the music-thanatology practice began at Sacred Heart Medical Center, a national conversation was taking place about providing adequate pain management for patients at the end of life. New protocols were developed, and palliative care emerged as a subspecialty. Music-thanatology was already in place at Sacred Heart Medical Center and Waggoner believes that it was “the anchor for the others [medical disciplines] to build on.” Although he acknowledges that others might not see it this way he believes that “if we hadn’t had that there, we wouldn’t be nearly as far along as we are. And the process would have been much more strenuous to get going, to reach the level we are at.” Former hospice administrator Mark Newson, formerly affiliated with Hospice of Sacred Heart in Eugene, Oregon, also believes that music-thanatology upholds the culture and mission of the hospice. And as a program it brings to life the mission and culture of this organization. Perhaps unlike any other program that’s offered within it, and particularly for a hospice program. It is something that’s just different out in the world . . . I think it speaks to the Catholic nature of the organization and the commitment to

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compassionate care. It sort of rounds out the rough edges of what medicine often times feels like — very cut and dried, a diagnosis, a treatment, and it embodies that other piece of the religious tone of Sacred Heart, of PeaceHealth.30

Dr. Gary Lee believes that music-thanatology helps to acknowledge the grace that can happen at the end of life, as human beings struggle to honor a life that is ending.31 This process is good not only for the patient and family, but for the whole hospital. Knowing that death is going to happen to everyone, Lee would like to “make it less frightening.” He advocated for a balance between talking about death without focusing on it in “in a negative way.” He feels there is much to be learned from dying patients. [S ]ome of these folks when you attend them, when you attend their death, there’s this sense of grace. And I’m not a particularly religious guy, that’s not what I really come from. But some people are very, very impressive with the dignity they have, the grace they have, the beauty about them. And you’d like to have people learn from those experiences. And I think that music-thanatology is a part of that, bringing a sense of dignity and grace and beauty to the end of life. Making our best efforts as mere mortals to still celebrate this person, even as we’re so distressed at their death.

Lee believes this enrichment would be “good for the whole . . . hospital.” He knows that it is easy to focus on medication and taking care of pain. “But if you’re really going to do a good job, you take it up another notch, into another dimension, and learn from that. So I think the harps [bring] the sense that music-thanatology can bring something very powerful to the healing culture of the community.” CONCLUSION What is medicine to do at the end of life, when medication, technology, and words fail? It is a confusing time, full of changing and reversing roles. Physicians talk about beauty and emotions. Music becomes more powerful than medication. Grief levels the playing field between patient, professional, and family member as a single death resonates through many lives. Things are not always as they seem in the time of dying. Dr. Stewart Mones referred to the music as a Trojan horse. Patients and families may not know exactly what they are agreeing to when they invite a music-thanatologist into the room: “We bring in the harp, and people accept it because it seems so acceptable, but they don’t realize that they’re about to be brought into touch with some really deep emotions.”32 Sometimes these deep emotions can serve as a catalyst for resolution and grace. Staff members are also being brought into deep emotions. They experience the collective pain of watching patients suffer and of losing them, again and

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again. They juggle the competing demands of budget, time-management, and patient care in the regular presence of one of the most profound moments in life, the time of dying and the moment of death. The longing that these staff members experience was palpable throughout our conversations — their longing for excellent patient care, for the ability to give and do more for those that they serve. Patients and staff hunger for something beautiful and meaningful in the presence of the fear and pain that can accompany death. Somehow, in ways that are difficult to articulate, music-thanatology meets this need. The music offers a space that is both within and also beyond biomedicine. Safe and protected, it offers calm from what chaplain David Waggoner calls “the storm of death.” It is not always clear how the music, compassionate presence, and clinical knowledge combine. But when they do, suffering, space, and even death can be transformed. NOTES Epigraph from an interview with Dr. Stewart Mones, April 29, 2008. 1. This hospital is now one of two sister hospitals, Sacred Heart Medical Center at RiverBend in Springfield, Oregon, and Sacred Heart Medical Center University District in Eugene, Oregon. 2. Interview with Robert Scheri, April 29, 2008. 3. Interview with Loraine McCarthy, Charlie McCarthy, and Sr. Vivian Ripp, April 26, 2008. 4. Ibid. 5. Interview with Carleen McCornack, April 28, 2008. 6. Telephone interview with Adrienne Simmons, April 22, 2008. 7. Interview with Mary Sheehan and Martha Twaddle, May 28, 2008. 8. Interview with Anne Rossiter, May 28, 2008. 9. Interview with Gary Lee, April 28, 2008. 10. Interview with Howard Lazarus, April 23, 2008. 11. Interview with Stewart Mones, April 29, 2008. 12. Interview with Nancy Romanchek, May 28, 2008. 13. Interview with Rose Jackson, April 23, 2008. 14. Interview with Howard Lazarus, April 23, 2008. 15. Interview with Mary Sheehan and Martha Twaddle, May 28, 2008. 16. Interview with Pam Simon, April 29, 2008. 17. Interview with Bonnie Roter, May 29, 2008. 18. Interview with Mark Newson, April 29, 2008. 19. Interview with Janelle McCallum, April 30, 2008. 20. Interview with Pam Simon, April 29, 2008. 21. Interview with Woodruff English, April 23, 2008. 22. Interview with Gary Lee, April 28, 2008. 23. Interview with Wendy EagleWolfe, April 28, 2008. 24. Interview with Theresa Helldorfer, April 30, 2008. 25. Interview with Fr. Kenneth Olsen, April 29, 2008.

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26. 27. 28. 29. 30. 31. 32.

Interview with Rev. Gina Volpe, May 28, 2008. Interview with Russell Ramo, April 29, 2008. Telephone interview with Mel Pyne, May 7, 2008. Interview with David Waggoner, April 29, 2008. Interview with Mark Newson, April 29, 2008. Interview with Gary Lee, April 28, 2008. Interview with Stewart Mones, April 29, 2008.

CHAPTER 7

Z Encounters with Death: Music and Transformation

“WE WILL ALWAYS REMEMBER YOU” I once provided a series of music vigils for a patient over the course of a week. On our first visit, her warm, welcoming family was at her bedside. She was strong enough to smile and speak, and she told me that she liked the music. Her kind family drew me in immediately. During my second visit a few days later, the woman was unresponsive, and I arrived at a time in the day when her family was not there. On my third and last visit, her family was by her side, and she was actively dying. The music vigil lasted for hours and included long periods of music, as well as storytelling and conversation. Once again, the family included me and other staff members as welcome guests in this intimate scene. Finally, a nurse who had been carefully watching the patient’s respirations gathered everyone close to the bed. The woman died surrounded by her family, held by their tender gaze and gentle touch, and accompanied by music. In the moments that followed there was a silence, and then a slow return to activity. Staff offered condolences, and family members began to make phone calls. People moved in and out of the room. After several minutes, one of the family members turned to me and said, “I don’t want to talk to anyone. Will you please keep playing so I don’t have to talk to anyone?” She sat in a chair close to the bedside, and I positioned my harp close to her and began to play, carefully blocking her from the movement of the room. When she was finished she said, “It’s okay. I can talk to people now. Thank you.” The music vigil was complete, and I left the room with my harp. I began to gather my bag and cart, and to put the harp in its case. Another family member came out into the hall to find me. His face was urgent and exhausted. He thanked me as he reached into his wallet for a bill. I thanked him for the gesture but delicately assured him that I had already been paid. As he put his

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wallet back into his pocket, he struggled to communicate a depth of emotion. He said, “I want you to know that we will always remember you. We will always remember that you were here with us.” In that moment, I understood the role of the music and my own presence in a new way — not just in the music vigil, but afterward, when this family looked back on this day. I began to see that I was not simply a musician offering harp music or singing, or a clinician, carefully attending to the relationship between the music and the patient’s level of comfort. This man helped me to see the role of my own humanity in the music vigil. I could see that I was a part of the larger human family of those who love, and lose what they love, and are grateful to those who sat with them in their grief. This chapter will explore the ways in which music-thanatology changes the way people die. Providing beauty, support, and information in the moments and the spaces where they are needed the most, the music vigil can affect patients and families, staff and caregivers, and music-thanatologists themselves. Utilizing the mystery of music’s influence on the body, mind, and spirit, the vigil offers a chance for transformation — fear into courage, grief into peace, holding on into letting go. DENYING DEATH, ACCEPTING DEATH Our most important question as healers is not, “What to say or to do?” but, “How to develop enough inner space where the story can be received?” Healing is the humble but also very demanding task of creating and offering a friendly empty space where strangers can reflect on their pain and suffering without fear, and find the confidence that makes them look for news ways right in the center of their confusion.1

When Catholic priest and writer Henri Nouwen used the image of “creating and offering friendly empty space” to describe the role of the healer, he captured the intention of the music-thanatologist at the bedside. In the place of musical virtuosity or purely clinical medical analysis, music-thanatologists offer the patient and family space—a compassionate, musical, essentially wordless, open space in which dying patients and their loved ones can do the necessary work of departing from one another. The offering of space is not only the music-thanatologist’s response to suffering, but also to the presence of death. Death, the great unavoidable, sometimes defies our medical expertise; it does not listen to our stories or believe our arguments. It is not moved by our music or our tears. Death’s purpose is simply to arrive. When we fear death’s arrival — our own or that of someone we love — what is it that we fear? We fear suffering — pain, grief, change, and loss. We fear the experience of meeting death and wonder if it will be physically painful, humiliating, or terrifying. A loss of control shadows the end of life, as dying patients give up more and more of their previous life. Sometimes they

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stop being able to choose what they eat, how they spend their time, or even whether they will be at home or in a nursing home or hospital. The dying patients move into a new, unfamiliar state in which nearly everything they know is passing away. As this happens, they confront the grief of leaving the people they love and the life they have known. The dying person’s loved ones may feel a different set of fears. They may fear the intimate tasks of caregiving or of watching the person they love decline. They may feel terrified at the thought of being present when the person actually dies, along with guilt or anxiety about their loved one dying alone. They may anticipate the grief that will follow death but may also long for death to occur to put an end to their waiting and wondering. In the contemporary American culture, we experience a lack of information and instruction around death and dying. Even physicians, who may be confronted with death on a daily basis, may have little training or experience in end-of-life care and may feel disoriented when a patient they have worked tirelessly to save suddenly reaches the end of his or her life. Surgeon Pauline Chen, in her memoir, Final Exam: A Surgeon’s Reflection on Mortality, describes the way she was trained to treat dying patients in the intensive care unit (ICU). Again and again, she watched the same ritual unfold in the patient’s final hours. The nurse closed the door or curtain to the patient’s room and turned off the noisy monitors. The physicians disappeared to “give the family some privacy.”2 Chen herself learned to expect this practice but remained uncomfortable with her role. She recalls, “I lingered around the ICU computers, busying myself with test results. I looked in on other patients who were in the ICU. Mostly I fidgeted at the nursing station, unsure of when to go away and when to stay.”3 It was not until she watched her attending physician join family members at the bedside of a particular patient, offering an explanation of the process and comfort to family members, that Chen began to understand the important role that physicians could play to support dying patients and their families. Chen’s description points to the evolving role of the physician during the dying process. As Dr. Stewart Mones described in chapter 6, it is sometimes difficult for physicians to resolve the tension between the promise they made to work to restore their patients to health, and the need to accept the moment when curative treatment must end. Music-thanatology can help ease this transition, by providing physicians and other caregivers the opportunity to offer something else, the friendly empty space provided by prescriptive music. Historian Philippe Ariès’s examination of death and dying, Western Attitudes toward Death from the Middle Ages to the Present, would classify Chen’s experience as forbidden death. After centuries of a culture that integrated death and dying into daily, family life, death moved from the home into the hospital in the mid-20th century. After this “displacement of the site of death,”4 death became something hidden from view, and mourning became

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something private and secret. No matter who had died, the mourner was culturally required to grieve in solitude. Ariès notes, “A single person is missing for you, and the whole world is empty. But one no longer has the right to say so aloud.”5 Music-thanatology responds to the solitude of grief by accepting it and by welcoming the patient and family into the space of the music vigil. Although the patient may not be in his or her own living room or bedroom, the music provides a protected space for acknowledging the loss and expressing the resulting emotion. The denial of death is a natural response to the terror of death, which Ernest Becker describes in The Denial of Death. Becker describes this terror as the underside of heroism; the hero is the one who acts in the face of death, or, mythologically, who enters the realm of the dead and returns triumphant. Becker argues that the terror of death is natural and occurs in all human beings. The human being as an organism struggles between two forces. On one end, it must be aware of the risk of death in order to judge its own risk taking and survive. On the other, when it looks death fully in the face, it risks becoming overwhelmed and unable to function.6 At the end of life, patients may experience this terror much more acutely. I would suggest that one of the reasons music-thanatology is so effective in this context is that it creates an environment where this terror can be acknowledged and accepted, and then responded to with beauty. If a death is made beautiful, and patients and their families find meaning in their final moments, then it seems likely that their terror will be diminished.7 Physician Michael Kearney discusses terror management theory in his book A Place of Healing: Working With Suffering in Living and Dying. This sociological theory, developed by sociologists Solomon, Greenberg, and Pyszczynski, builds on Becker’s work and postulates that a defining characteristic of human beings is their capacity to perceive their own mortality, called mortality salience. The unconscious dread that this causes is avoided by an anxiety buffer, created when individuals deny their own death and maintain a strong connection to the larger culture, which decreases anxiety and provides self-esteem. Once shaken, this anxiety buffer can re-created by “reinforcing the dominant cultural world views” or “distancing oneself from or denigrating alternative views.”8 Importantly, this may explain the ways in which influences outside the mainstream medical model are so vehemently denied. According to Kearney, “At best these approaches are denigrated as ‘soft’ (i.e., tolerated within the system but, by implication, not really that important or relevant in the real world of ‘hard data’); at worst, they are rubbished as ‘useless’ or even ‘dangerous.’ ”9 This may help to explain the underutilization of hospice as an alternative to ongoing treatment of disease processes, or the resistance to utilizing complimentary or alternative medicine for patient care. The frustration and pain caused by the terror of death — and its resulting denial — has forced contemporary physicians and advocates to call for a more

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open conversation about death. Surgeon Sherwin Nuland, in his book How We Die: Reflections on Life’s Final Chapter, argues that it is only an open conversation about death that will lead to relief from this fear and anxiety. Nuland contends that “only by a frank discussion of the very details of dying can we best deal with those aspects that frighten us the most. It is by knowing the truth and being prepared for it that we rid ourselves of that fear of the terra incognita of death that leads to self-deception and disillusions.”10 Nuland enacts this discussion by taking the reader through a series of descriptions of disease process at the end of life. The voices in this volume contribute to this frank conversation. Music-thanatologists’ dual role as musician and clinician lends them a dual perspective on the need for a friendly empty space, where those who suffer can find relief and comfort. Unlike a physician or nurse, music-thanatologists do not try to cure the disease. Unlike a chaplain or social worker, they have the option of regularly using music with patients and families. Because of their limited relationship with the dying person, they will not necessarily grieve the loss of the patient as a loved one will. Instead, the music-thanatologist models an acceptance of death, providing music and an opportunity for meaning making as a path through the terror. The music-thanatologist’s ability to accept the presence of death comes from the contemplative practice of music-thanatology. The practitioner crosses into the presence of death again and again. No matter what happens, they remain present and open as they offer music. Even when the patient dies and family members wail and weep with grief, they sit, holding a loving intention. In their conversation about death, they speak with humility and patience about the practice of remaining centered, moment by moment, as both astonishing and mundane events unfold within the music vigil. Although they have introductory information about the patient’s status, they never know what will happen. Twenty additional family members may arrive, each wanting a chance to say good-bye. A family member who wishes to pursue aggressive treatment may resent the harp, believing it to be a poor replacement for chemotherapy. A staff member may enter the room and wake the patient, asking them to take medication. It is a surprising and ever changing space, as death itself is surprising and ever changing. This is a different type of connection from other clinical—or even pastoral— interactions that a patient may encounter. Because it occurs outside the realm of words, it does not require the patient to contribute conversation or the answers to questions. The patient can simply rest in the music. While it may not have many of the features of an ongoing clinical relationship, this connection may be felt deeply by the patient, the loved ones that are present, and the musicthanatologist. The music is the location of this relationship. Music-thanatologists concur that each death is utterly unique. Instead of becoming more and more similar to one another over time, each patient

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becomes more and more singular. Music-thanatologists’ reflections about these singular experiences fall into several broad categories. First, they offer themselves as a source of information and education about death and dying to patients, family members, and staff. In a culture that struggles to provide accurate information about death and dying, music-thanatologists sometimes find themselves as the experts in the dying process, offering helpful information to patients, families, and even medical staff. This may include signs and symptoms of imminent death, reassurance about the timing of death, and reflections about whether or not the patient’s symptoms indicate pain or discomfort. Because they have seen so many patients close to death, and because they carefully focus on the dying patient for 30 – 60 minutes during a music vigil, they are attuned to both overt and subtle cues. This feedback can provide reassurance to those who are seeing death for the first time. Second, they consider death as a natural process occurring in a spiritual context. Although it may be tempting to feel some influence within the dying process as the patient responds to the music, ultimately music-thanatologists know they are simply accompanying a journey that is already in motion. In this spirit, they offer space for this process to unfold. Third, beauty and awe are regular features of the music vigil. They are grateful to be welcomed into powerful and moving moments with patients and families. Although every practitioner also has difficult vigils, many report that the majority of their interactions at the bedside are positive, often leaving them with a feeling of awe. Finally, like every human being, music-thanatologists grapple with questions about the fear of death. Some have made a dramatic change in their own relationship to death and dying in order to become music-thanatologists, while others come to the work with an intuitive comfort with death, which their practice supports and expands. In the music vigil, they often witness situations that they hope to encounter at the time of their own death. Repeatedly sitting in the space of the music with dying patients, music-thanatologists become less afraid of death and more certain of the power of music to transform suffering. EDUCATING OTHERS ABOUT DEATH For some music-thanatologists, the experience of frequent exposure to death and dying leads to a new role as educator. As they learn more and more about the symptoms of imminent death, they can respond to the many questions and concerns of patients and families. They see themselves as resources of information about death and dying, which they regularly offer to patients and families. Tony Pederson and Margaret Pasquesi, who were introduced in chapter 4, work for Midwest CareCenter, a large hospice that serves about 350 people each day.11 One of the ways Pederson feels he is most useful as a

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music-thanatologist is in providing a calm and reassuring presence. Because he has been at bedside music vigils thousands of times, he is well-prepared to support patients and families who express a variety of emotions as they confront death for the first time. He tries to reassure people through his own behavior in the music vigil, providing a model rather than directives. Not that I know what’s going to happen, but that I have some perspective and I can tell them if I’ve seen this before . . . Because you walk into situations where people are up against the wall, and they don’t want to come near to the hospital bed, because there are . . . tubes and wires and there’s hardly a person in the bed. To show people that you can hold somebody’s hand, and talk to them like they can hear you. I think it goes a long way to putting people at ease, and giving them permission to treat this person like a person.

Pederson feels that his presence not only helps patients and families, but also the nursing staff. He offers his expertise to nurses with less experience in endof-life care, even reviewing the list of medications and offering his observations of the patient’s symptoms from the music vigil. Pasquesi points out that her music-thanatology training allows her to observe and assess the state of the patient, particularly the differences between agitation and pain, the subtle communication of the nonverbal patient, and the difference between pain management and overmedication. Pederson also frequently hears concerns from family members about the patient’s level of medication. He can educate family members by pointing out what he observes in the patient: “A family member will hear that a person is on morphine, and to them that sounds like they’re doped out of their mind. And to be able to point out no, when someone is on too much morphine, you won’t see these little movements.” For example, a patient who is still able to swallow is likely comfortable, without being overmedicated. Pasquesi echoes the voices of other music-thanatologists when she says that she understands her role as a confident guest at the bedside, which she defines as “someone who’s calm and reassuring. The confident guest is not afraid of death, and can offer information and reinforce what the team has been saying. They don’t need to be taken care of.” Pasquesi also makes herself explicitly available as a source of information about death and dying. One of the things I’ve learned here is to ask “Do you have any questions about what to expect?” And people don’t even know what they should be asking. And so I ask, “Do you have any questions about what to expect when they actually die?”

Pasquesi can then reassure the family if they have concerns about leaving the bedside. When they have questions, she offers information about the signs of imminent death. For example, the patient may have long periods without

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breathing, and then may begin to breathe again. Family members may see the patient’s skin tone change, or they may see mottling, a process in which the blood pools as circulation begins to slow. This reassuring presence and education is a way for her to be with patients “like a midwife.” Pasquesi gently encourages families to take care of themselves so that they can be physically, emotionally, and spiritually present as their loved one approaches his or her final moments. She feels it is a privilege to have this knowledge and to be able to share it. DEATH AS NATURAL, DEATH AS SPIRITUAL For some music-thanatologists, death has a natural, spiritual quality that allows them to be comfortable in its presence. They witness, but do not get caught up in, the suffering that the patient and family express. For Jan, a music-thanatologist we met in chapter 5, this quality comes out of her understanding that death is a developmental task. For Annie Burgard, who we also met in chapter 5, it comes out of her understanding of music as medicine. Jan is a former psychiatric nurse, and her interest in states of consciousness informs her understanding of death. Death is tightly woven into other aspects of life, and she quotes Elisabeth Kübler-Ross when she calls it “the final developmental task of life.” Kübler-Ross, a psychiatrist who wrote and taught extensively on death and dying, believed that the dying process offers an opportunity for growth. She believed that everyone can perceive on some level that they are meant for more than “eating, sleeping, watching television, and going to work 5 days a week.”12 Those who have the experience of going through the dying process with someone, and who choose to examine it closely, can grow significantly from it. Kübler-Ross acknowledges the almost universal temptation to avoid any consideration of death and dying. But if you have the courage to deal with it when it comes into your life—to accept it as an important and valuable part of life—then, whether you are facing your own death, that of someone in your care, or that of a loved one, you will grow.13

Jan believes that one of the tasks of dying is to understand that we are all one. The movement toward death is an opportunity to perceive this unity. She sees this in her role as a music-thanatologist, and she also witnesses patients and families who create a beautiful, loving space together even before the harp or vocal music begins. There are so many times when I’ve entered the patient setting, wherever it is, and there’s clearly already a vigil going on there. Not just because of the sheer number of family members gathered. But clearly, they are so aware . . . there are times when I think, They don’t even need me. They are already present, and they are doing what they need to do, and love is being expressed.

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Jan believes that music-thanatology may help transform the culture of death in the United States. For her, this impact comes out of the reverence that music-thanatology offers to dying patients, which contributes something essential to the experience of death. She would like to see the culture respond with as much love and respect toward death as it does toward birth. The one thing that I would want the world to understand is that birth and death are the same. And that we bring so much joy and reverence and attention to bringing a life into the world, and that we must come to understand that we need to attend to those who are dying in just the same way. That taking our leave from this world is absolutely just as important as coming in. And I feel as though music-thanatology brings that message through its beauty and intimacy, and its tenderness . . . all the qualities that you would want to have present at someone’s birth. And it is a birth, it’s the birth of that soul, in a new state of awareness.

As she grows in her knowledge of different states of consciousness, Jan finds that she is no longer surprised by death. She believes that people have difficulty comprehending the reality of death, since its exact moment is unknown and unknowable. In medicine, there are elements of death and dying that can be measured, such as blood pressure, respirations, and heart rate. This gives the illusion that an individual is alive in one moment, and dead in the next. Jan understands death in a different way. That various functions in the body are slowly closing down. And if you look at the brain and consciousness . . . we’ve got millions of neurons in the brain, and they’re slowly dying off. I think we’re returning slowly, gradually to that more essential self that we’ve been talking about, and to accessing that state of pure awareness. But I think . . . you know that whole process can be continuing, even as the brain moves toward the simplicity of one last cell.

For other music-thanatologists, their relationship with death has to do with their understanding of music-thanatology as ministry. Annie Burgard is a music-thanatologist in Columbia, South Carolina.14 When questions turn to the suffering she witnesses and how she copes with it, she uses the language of the pastoral care department she works for to answer, saying that the music can minister to whatever occurs. No matter what happens, she remains grounded in her role of creating attentive space: “I watch. I keep vigil. I allow anything to come up, whether it’s tears, bitterness, anger, or someone who loses it in the middle of the vigil.” It is her practice to simply let all the emotional responses come into the room. By accepting whatever happens, she is able to help resolve it. Burgard sees herself as part of the team at the hospital where she works and can rely on her colleagues for support. She says, “I think that’s what we’re there to do: to help the energy move, to help the spirit move,

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to help it move through. Once it comes through, whether it’s anger or sadness, I assume that’s what needed to happen. I don’t take it home with me.” BEAUTY AND AWE IN THE MUSIC VIGIL One of the remarkable things about music-thanatologists’ relationship to the dying process is their gratitude. They feel a deep appreciation for the power of the music and the welcome of the patients and families they serve. If they the mention pain or grief associated with death, it is most often as an afterthought or exception, a way to contrast a particular music vigil from all the others. For example, as we saw in chapter 4, they may remember a particularly difficult music vigil among many others that were calm and peaceful. It is not the case that music-thanatologists simply build up a gritty tolerance to the presence of death. They are not immune to or detached from the suffering they witness. Instead, they are deeply engaged, attentive to even the smallest detail of the patient’s and family’s needs. And they describe a deep love for the work and an ongoing interest in learning more and more about the ways in which music eases the transition to death. I would suggest that it is the efficacy of the music that facilitates the practitioners’ ability to continually remain present to the dying process. When all other treatments have failed, music-thanatologists can offer something that works. The music vigil is an opportunity for healing — whether that healing is spiritual, emotional, or indescribable — even if the disease continues to progress. Far from being afraid at the bedside, these practitioners describe powerful, moving, and tender music vigils. The dying process in these moments is not primarily filled with grief and suffering, although tears may be shed or difficult words expressed. These moments are instead filled with beauty, love, and meaning. Claudia Walker, who shared a story in chapter 4, job shares a musicthanatology position in Everett, Washington.15 A former music therapist, Walker is passionate about the role that beauty has to play in end-of-life care. For Walker, this is also a personal desire. She says, “As I get older, more and more I want beauty around me. I want color. I want flowers and art. And so we have this living art that we are bringing into places of fear and anxiety and I just think it’s incredibly important. It does have a rippling effect.” Walker believes that this rippling effect creates a change in the culture. She classifies the United States as a “death culture,” evidenced by the media’s fascination with death. We are surrounded by images of violence all the time, even as we push death away on a personal level. We seem to think that the violence will never touch us, although we are constantly exposed to it. Walker understands music-thanatology as a practice with the power to transform this violent culture. She points out that it “sounds dramatic,” but she believes that music-thanatology holds the power to “provide some sanity to

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the madness that is all around us.” She believes this is one reason why people are so grateful to find themselves in a music vigil. But I think it is such a relief sometimes for people to come into vigil, to be a part of this work that we do, and just enter the peacefulness of it, the calmness, the beauty. I mean I can’t overestimate the importance of the beauty. Most of us are so bereft of it.

Walker has had profound experiences with dying patients in the presence of this beauty. She says, “I keep being awed by the mystery of it for each person. We simply can’t predict how someone is going to move through the process. The physical signs can defy what we would guess.” In a recent music vigil, Walker had a physical sensation of the patient’s shift toward death in the last two or three minutes of her life. She felt a strong intuition to pay attention and to begin to sing. As the patient died, Walker could see two tears roll down her cheeks. The patient was a former opera singer and counselor. “And I really do wonder if because of her intimate connection with music, that music was a passage, bridge for her in that moment of time. But something profound seemed to be happening,” says Walker. She highlights the attention required in the music vigil. It’s like now is this moment, and I guess you could say maybe that it is a feeling like I would imagine a midwife would have as that baby is crowning and coming. That you know you just have this one moment, you just happen to be the one and just be with it, be there.

Other music-thanatologists describe a similar sensitivity to the needs of the dying patient. The role of accompanist means that the music-thanatologist remains open and watchful as they attend to the dying patient, carefully looking for small indicators: a tear in the eye, a hitch in the breath, a small movement in the hand, a wrinkle in the forehead. Each is a communication, affecting the prescriptive process. Christine Jones, whose vocation for music-thanatology was described in chapter 5, had a limited exposure to death before becoming a musicthanatologist.16 Her only experience was the loss of her grandparents. Like Claudia, she has had profound interactions with dying patients in which she was able to perceive something of death itself as it approached. “There have been instances where I have actually sensed the spirit moving from the body,” says Jones. There is a lot about working with the dying that surprises her. I didn’t expect to have a sense of awe and wonder, or that great sense of the other. I didn’t know that I would have this feeling of honor, or the sense that I was in the presence of something undefinable that had great mystery and beauty.

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As she spends more and more time around dying patients, she has come to a deeper and more detailed understanding of the signs and symptoms of impending death and has learned to respond with music. She feels particularly aware of the needs, presence, and individuality of the patients she serves, even when they are not verbally responsive. “There are so many times when the symptomology is similar to something I have seen before, but then these lovely personality quirks and spiritual influences come in. They can be so very varied,” says Jones. Because of these variations, Jones must constantly assess the needs of the individual patient and make adjustments according to what unfolds before her. She must be careful to monitor her own desire for the music vigil to look and feel a particular way. With this close attention, Jones can take the patient’s needs into consideration: “I’m surprised by how sensitive I’ve become to the needs of another person, even though they may be within minutes of dying. They have needs, even in their final moments! And so I have become sensitive to those, and try to honor those differences.” As they react with beauty and awe, music-thanatologists also witness suffering. In order to cope, they must find ways to support themselves, both personally and professionally. Sile Harriss, a retired music-thanatologist, had little experience with death before she began in the field.17 She jokes that after 15 years as a music-thanatologist, she still does not know anything about death: “It’s walking into the unknown, every single time you do it. Every single time. You walk into something you have never, ever experienced before. It’s so different.” As she neared the end of her career, Harriss made an honest assessment about her ability to continue in the work. Over time, she realized she was not being sustained in the face of the suffering she witnessed. I didn’t feel like I was getting what I needed to be able to go into those rooms and go across that threshold again and again and again . . . I wasn’t getting sustained . . . For me that showed itself in just simply not being able to put the kind of loving attention on patients and families that I knew I had been able to in the past, and that they deserved, and that I wanted to give them, for heaven’s sake. It isn’t that I didn’t want to. It was that I couldn’t do it.

Harriss believes that the key to remaining able to attend to dying patients over a long period of time is to remain connected to a team. While working as a faculty member for the School of Music-Thanatology at the Chalice of Repose Project, Harriss was a part of a community of faculty members and students. Even if they were not able to find answers to every question, their shared training and goals made it possible for them to quickly offer a reflection or encouraging word of support. Harriss believes this community offered her the type of sustaining support she needed.

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Even as Harriss raises these complex questions, she describes her own experience when patients died in the music vigil as one of awe. She describes herself as someone with a reputation for being unflappable. When a patient died in her presence, she was outwardly very calm. “And what’s really happening under the surface is that I’m really just totally, once again, stunned. Blown away. And overawed by the fact that they’ve moved on. Just totally, totally brought to my knees,” she says. Harriss believes that music-thanatology can have a powerful effect, even when people do not expect it. What they think they’re expecting, 80 times out of 100 is some kind of pleasant background music that’s going to distract them from all this. And what they’re going to get . . . 80 times out of 100 is some form of connection through sound to what they can’t face on their own yet. And it’s not going to be the way they thought it was. And you know that, because you’re the music-thanatologist. But they don’t know that yet. So you get to bridge, you get to build the bridge from wherever they are — which is sometimes nowhere, or everywhere. And it’s like unraveling a big knot. You get to slowly pull on the ends and see where the snarls are. And you do that with the music.

OVERCOMING THE FEAR OF DEATH In my conversations with music-thanatologists, it was unusual for anyone to mention fear or anxiety about being in the presence of death. Repeated exposure to patients at the end of life, and to death itself, helped music-thanatologists become comfortable, capable even of transforming a deep aversion to death and dying. The implication from these stories is that the music vigil can also transform the fear of death and dying for the patient and family. Michael Sasnow is a music-thanatologist in Portland, Oregon.18 He came to music-thanatology from a career in chiropractic, and his current work life is divided between his various areas of expertise: chiropractic, acupuncture, musical performance, and music-thanatology. He reflects on his comfort with the dying process. One thing is that I just have no discomfort about death. I feel like I could happen upon any situation where somebody’s dying and be able to offer my presence, whether I was doing music-thanatology or not. There’s something about being around death that just seems so familiar at this point.

Sasnow is also grateful and honored by what he is invited to witness in music vigils. This is the first thing I’ve ever done where absolutely without a doubt if I won the lottery I would still do it. Often, I’ll be sitting there in the course of a vigil, and then all of a sudden I have this fleeting thought of —I can’t believe this is

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what I get to do. I can’t believe I get to sit at this beautiful instrument and offer this music and have the opportunity to connect with people, even if they are strangers. To be able to connect with them, especially when they’re inviting me into the midst of what might be the most raw, vulnerable personal thing they’ve ever done. And I get to sit there and play music. It’s just amazing to me.

This depth of gratitude appeared again and again in my conversations with music-thanatologists. Rather than feeling as though they are doing something for the patient or giving something to the family members, they are much more likely to speak about the music as something that they are experiencing as well. It is typical to hear a surprise and humility similar to Sasnow’s at being invited into these precious and profound family moments. Although he has been asked if he feels he has become hardened to the dying process, Sasnow feels instead that the opposite has occurred: “I feel like I’ve just become so familiar with the process and the energy, and with the different possible ways of people being around it.” Sasnow is honest about his reaction when he sees people who are struggling. For example, he may see a patient who is having trouble breathing. “And in those moments, I sometimes have something come up like . . . I hope I don’t go like that,” he says. However, he most often witnesses scenes that he would like to experience at the end of his own life. What remains with Sasnow is the uniqueness of each death and the significance of the music vigil. One bit of wisdom I’ve learned is that everybody’s death and everybody’s experience with the death of a loved one is very personal. Very different things may be appropriate for different people for all sorts of reasons you don’t know. No matter what transpires in the music vigil, it’s still an amazing experience for me that every vigil is so unique. The music vigil is consistently meaningful and significant for people. It’s also a profound experience for me, and a gift to be able to connect with people in that way.

Another music-thanatologist experienced a complete change from a profound fear of death. Donna Madej works at the Sacred Heart Medical Center in Spokane, Washington.19 Madej’s work in end-of-life care is the result of what she calls “a conversion experience.” In her early life, she had a “horror” of death, which she found “very, very overwhelming.” When her father died in 1974, this fear became worse and continued for 20 years. But when her mother died in 1997, Madej’s relationship with death changed completely. She attributes this change to the tender care her mother received. Although Madej was not yet familiar with music-thanatology, she played a CD of harp music for her mother. After her death, Madej gave a copy of this CD to the nurse who had cared for her. About 18 months later, Madej began to train to be a chaplain. She was surprised to find herself drawn to work in end-of-life care and asked to work

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with hospice. She believes it was the contrast between the deaths of her two parents that ultimately caused her change of heart. She saw first-hand the difference that people can make when they provide excellent end-of-life care, and she wanted to offer that gift to other families. Now in her work as a music-thanatologist she can observe the ways in which the music helps to comfort those who are fearful of death. Madej’s intense fear of death has never returned. There are moments that are difficult, particularly when people are struggling or in pain, but she is no longer afraid: “I don’t run from it any more. I stopped fighting death.” Madej feels privileged to be invited to witness the dying process of her patients. She finds that her patients have “given me a tremendous amount of courage and knowledge that we can all do this.” One of the most incredible aspects of this work is helping families to face death. Because it’s hard to look death in the face, especially when it’s in the face of someone that you dearly love. And time after time, I would say 98 percent of the time when I’m playing, the music will turn the people in the room toward the patient. It lets them sit in the moment, with all of their emotions, and they’re cradled by this beautiful and incredible sound. And I think there’s a safety in the sound that enables them to look at death right in the face, because they do.

ENGAGING THE MYSTERY OF DEATH Music has the power to engage with and transform the mystery of death. It is a mystery that music-thanatologists confront again and again, as witnesses to the patients they serve. Laura Lamm, former president of the Music-Thanatology Association International and a music-thanatologist at Providence St. Vincent Medical Center in Portland, Oregon, spoke to this mystery. When asked what surprises her about being a music-thanatologist, she thought for a moment and said, “That people are breathing, and then they stop.”20 With great clarity and simplicity, Lamm captured one of the most profound elements of being human: that we will die, and that those we love will die. This mystery is a journey that all of us are already on. That we lose those we love is utterly intertwined with the human experience. Like birth, death is an unavoidable fact associated with strong emotion and requiring support and information. Those approaching both the start and the end of life can find courage in the places where they find beauty and meaning in their suffering. As Therese Schroeder-Sheker pointed out in her original term for the work, and others have echoed during our conversations, the music-thanatologist functions much like a midwife. The midwife does not control what is happening, but instead attends and supports the transition, providing comfort and wisdom. This expertise is based in having seen this before and knowing how to offer a presence, gently but confidently, until the transition is complete. The midwife does not do something as much as he or she is something,

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a witness to what is happening who offers good counsel and a supportive presence. Ultimately, music-thanatology offers music and a loving, compassionate presence as a path through death’s mystery. The music vigil helps to make meaning out of the senselessness of disease and the pain of loss. It offers beauty to those who suffer and provides a human witness for human grief. As this transformed space is created, everyone in the music vigil — patient, practitioner, and loved ones — can find their way together. NOTES 1. Nouwen, Reaching Out: The Three Movements of the Spiritual Life (1966): 97. 2. Chen, Final Exam: A Surgeon’s Reflections on Mortality (2007): 98. 3. Ibid. 4. Ariès, Western Attitudes toward Death: From the Middle Ages to the Present (1974): 87. 5. Ibid., 92. 6. Becker, The Denial of Death (1973): 15 – 17. 7. I am grateful to Tony Pederson for this insight and for his reflections on the music vigil as a container for meaning making. 8. Kearney, A Place of Healing: Working with Suffering in Living and Dying (2000): 18. 9. Ibid., 19. 10. Nuland, How We Die: Reflections on Life’s Final Chapter (1993): xvii. 11. Interview with Margaret Pasquesi and Tony Pederson, May 28 – 29, 2008. 12. Kübler-Ross, Elisabeth, Death: The Final Stage of Growth (1975): 117. 13. Ibid., 117. 14. Interview with Annie Burgard, August 3, 2008. 15. Interview with Claudia Walker, October 7, 2008. 16. Telephone interview with Christine Jones, August 4, 2008. 17. Interview with Sile Harriss, April 22, 2008. 18. Interview with Michael Sasnow, April 22, 2008. 19. Telephone interview with Donna Madej and Betty Barber, June 29, 2008. 20. Interview with Laura Lamm, April 23, 2008.

Resources

PROFESSIONAL AND EDUCATIONAL RESOURCES FOR MUSIC-THANATOLOGY The Chalice of Repose Project Inc. Mt. Angel, Oregon http://www.chaliceofrepose.org

The Chalice of Repose Project pioneered music-thanatology clinical care and educational programs worldwide and, through the work of Therese Schroeder-Sheker, has been distinguished with numerous awards, grants, and honors over three decades of work. The organization provides several different educational programs nationally and internationally, maintains an online bookstore, and provides multiple scholarly resources, recordings, scores, and DVDs for the field. Currently, the organization establishes new clinical practices in eight American cities each year and manages a series of graduate-level scholarships and modest clinical practice grants funded by individual and institutional philanthropy. Lane Community College Music-Thanatology Training Portland, Oregon http://www.lanecc.edu/ce/music Contact: Jane Franz at [email protected] or Sharilyn Cohn at sharilyn@ sacredflight.org

Students receive more than 600 contact hours during this two-year, nondegree training, which includes 20 didactic weekend intensives in Portland, Oregon, and one-on-one clinical internships. The training is designed to prepare students to meet the Standards and Competencies of the Music-Thanatology Association International (MTAI), the independent

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certification body for music-thanatology worldwide. Clinical internships provide students with more than 300 hours of on-site experience in hospitals and hospices working one-on-one alongside an MTAI-certified musicthanatologist mentor. Students also have an opportunity to participate in well-established annual concerts throughout the Pacific Northwest. Areas of study include but are not limited to the following: prescriptive music analysis, anatomy and physiology, palliative medicine, the nature of suffering, clinical narrative writing, vital signs practicum, medical terminology/pharmacology, monthly clinical discussions, harp and voice instruction, history of death and dying, contemplative studies, ethics, schola cantorum, and developing a music-thanatology practice. Music-Thanatology Association International Portland, Oregon http://www.mtai.org

The Music-Thanatology Association International (MTAI) is a professional organization for music-thanatologists, students, and supporters. It provides music-thanatologists with Standards and Competencies, a Code of Ethics, and a rigorous certification process. The MTAI provides opportunities for professional development through its annual membership conference and publishes the online Journal of the Music-Thanatology Association International. DISCOGRAPHY AND DVDS All CDs listed are by music-thanatologists, unless otherwise noted. Beauty Awaits, instrumental music by Jeri Howe and Claudia Walker. Contact: [email protected] or call the Spiritual Care office at PRMCE (425) 261- 4550. Purchase of this CD supports the work of Sacred Harmonies Music-Thanatology Harp program at Providence Regional Medical Center Everett. Discounts are available if ordering for an institution for resale. Dawning of the Day, by Laurie Rasmussen. Contact: http://www.laurierasmussen.com. Fly Aloft (DVD). An interview with Stuart Hayward, a music-thanatology patient who participated in a research project at Deakin University. Contact: enquiries@ imim.com.au. Harp Music of Light, by Christine Jones and Ann Dowdy. Contact: (801) 648-2279 or harpmusicofl[email protected]. Loom of Love and From the Deep Earth, by Music-Thanatologists from the Pacific Northwest. Contact: http://www.peacehealth.org/Oregon/PastoralCare/LoomOf Love/ LoomOf Love.htm or http://www.peacehealth.org/Oregon/PastoralCare/FTDE/ DeepEarth.htm. The purchase of these CDs supports the work of music-thanatology.

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Love and the Ferryman and The Sanctuary, by Peter Roberts, Threshold Music Services. Contact: http://www.robertsmusic.net. No Strings Attached: Love Songs for Harp and Voice, by Judith Shotwell. Contact: Judith Shotwell, P.O. Box 212, El Rito, New Mexico 87530; Tel: (575) 581- 4715. Rest and Remembrance: A Collection of Music for Reflection and Comfort, by Music Care Services at Midwest Palliative & Hospice CareCenter. Contact: careinfo@ carecenter.org. Music Care Services is made up of music therapists and music-thanatologists at Midwest Palliative & Hospice CareCenter, Glenview, Illinois. Shadow Play, by Michael Sasnow, Neshama Arts. Contact: [email protected]. The Wayfaring Pilgrim and Blue River Ballads, by Gary Plouff, Memory Tree Music. Contact: http://www.home.earthlink.net/~harpweaver.

MUSIC-THANATOLOGY WEB SITES HarpBridge, Columbia, South Carolina http://www.harpbridge.com Harpsong, Salt Lake City, Utah http://www.prescriptivemusic.org The Institute of Music in Medicine, Geelong, Victoria, Australia http://www.imim.com.au Kelly Lockwood, San Francisco, California http://www.kellylockwoodharp.com Memory Tree Music, Eugene, Oregon http://www.home.earthlink.net/~harpweaver/ SacredFlight, Portland, Oregon http://www.sacredflight.org Sacred Harmonies, Seattle, Washington http://www.home.earthlink.net/~sacredharmny/sh_index.html Threshold Music Services, Geelong, Victoria, Australia http://www.robertsmusic.net

PERFORMANCE ABOUT MUSIC-THANATOLOGY Sailing by Night, by Judith Shotwell. Contact: Judith Shotwell, Circle of Love, P.O. Box 212, El Rito, New Mexico 87505; Phone: (575) 581-4715. A 45-minute solo performance piece exploring death and loss from the perspective of music-thanatology. This theatrical mix of humor, beautiful music, movement, and tender stories is a powerful artistic and educational tool for both the general public and the full spectrum of health care practitioners. An excellent centerpiece for community outreach, conference, and/or benefit events, Sailing by Night engages and inspires the audience, opening up new avenues for much-needed dialogue on end-of-life care.

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FURTHER INFORMATION Harps Dusty Strings http://www.dustystrings.com (866) 634 -1656 Musicmaker’s Kits http://www.harpkit.com (800) 432-5487

Hospice and Palliative Care American Academy of Hospice and Palliative Medicine 4700 W. Lake Avenue Glenview, Illinois 60025-1485 Phone: (847) 375-4712 Fax: (847) 375-6475 E-mail: [email protected] http://www.aahpm.org Center to Advance Palliative Care 1255 Fifth Avenue, Suite C-2 New York, New York 10029 Phone: (212) 201-2670 E-mail: [email protected] http://www.capc.org Hospice and Palliative Nurses Association One Penn Center West, Suite 229 Pittsburgh, Pennsylvania 15276 Phone: (412) 787-9301 Fax: (412) 787-9305 E-mail: [email protected] http://www.hpna.org National Hospice & Palliative Care Organization 1731 King Street, Suite 100 Alexandria, Virginia 22314 Phone: (703) 837-1500 Fax: (703) 837-1233 E-mail: [email protected] http://www.nhpco.org

Music Therapy American Music Therapy Association Inc. 8455 Colesville Road, Suite 1000 Silver Spring, Maryland 20910

Resources

Resources

Phone: (301) 589-3300 Fax: (301) 589-5175 E-mail: [email protected] http://www.musictherapy.org

Therapeutic Music Harp for Healing LLC P.O. Box 3391 Littleton, Colorado 80161 Phone: (303) 591-1017 E-mail: [email protected] http://www.harpforhealing.com Harp Therapy Journal 3922 Orchard Road Macungie, Pennsylvania 18062 Phone: (610) 966-5677 E-mail: [email protected] http://www.harptherapy.com International Harp Therapy Program P.O. Box 333 Mt. Laguna, California 91948 Phone: (619) 473-0008 Fax: (619) 473-1233 E-mail: [email protected] http://www.harprealm.com International Healing Musician’s Program P.O. Box 272 Lummi Island, Washington 98262 Phone: (206) 729-1882 or (877) 720-0288 E-mail: [email protected] http://www.healingmusician.com Music for Healing and Transition Program Inc. 22 West End Road Hillsdale, New York 12529 E-mail: [email protected] http://www.mhtp.org The Vibroacoustic Harp Therapy Training Course® 3922 Orchard Road Macungie, Pennsylvania 18062 Phone: (610) 966-5677 E-mail: [email protected] http://www.harptherapy.com

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Bibliography

Ariès, Philippe. Western Attitudes toward Death: From the Middle Ages to the Present. Baltimore: Johns Hopkins University Press, 1974. Becker, Ernest. The Denial of Death. New York: Free Press, 1973. Becker, Judith. “Music, Trancing and the Absence of Pain.” In Pain and Its Transformations: The Interface of Biology and Culture, ed. Sarah Coakley and Kay Kaufman Shelemay. Cambridge, Mass.: Harvard University Press, 2007. Begbie, Jeremy. Theology, Music, and Time. Cambridge, UK: Cambridge University Press, 2000. Buck, Joy. “Reweaving a Tapestry of Care: Religion, Nursing, and the Meaning of Hospice, 1945–1978.” Nursing History Review 15 (2007): 113 – 45. Chen, Pauline W. Final Exam: A Surgeon’s Reflections on Mortality. New York: Vintage Books, 2007. Coakley, Sarah, and Kay Kaufman Shelemay, eds. Pain and Its Transformations: The Interface of Biology and Culture. Cambridge, Mass.: Harvard University Press, 2007. Cox, Helen, and Peter Roberts. “From Music into Silence: An Exploration of MusicThanatology Vigils at End of Life.” Spirituality and Health International 8 (2007): 80 – 91. Dileo, Cheryl, and Dawn Dneaster. “Introduction: State of the Art.” In Music Therapy at the End of Life, ed. Cheryl Dileo and Dawn Dneaster. Cherry Hill, N.J.: Jeffrey Books, 2005. du Boulay, Shirley. Cicely Saunders: The Founder of the Modern Hospice Movement. London: Hodder and Stoughton, 1984. Edwards, Jane. “The Use of Music in Healthcare Contexts: A Select Review of Writings from the 1890s to the 1940s.” Voices: A World Forum for Music Therapy 8, no. 2 (2008), http://www.voices.no/mainissues/mi40008000270.php. Freeman, Lindsay, Michael Caserta, Dale Lund, Shirley Rossa, Ann Dowdy, and Andrea Partenheimer. “Music Thanatology: Prescriptive Harp Music as Palliative Care for the Dying Patient.” The American Journal of Hospice & Palliative Care 23, no. 2 (March/April 2006): 100–104.

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Bibliography

Garber, James J. Harmony in Healing: The Theoretical Basis of Ancient and Medieval Medicine. New Brunswick, N.J.: Transaction Publishers, 2008. Heinz, Donald. The Last Passage: Recovering a Death of Our Own. New York: Oxford University Press, 1999. Hilliard, Russell E. Hospice and Palliative Care Music Therapy: A Guide To Program Development and Clinical Care. Cherry Hill, N.J.: Jeffrey Books 2005. Hilliard, Russell E. “Music Therapy in Hospice and Palliative Care: A Review of the Empirical Data.” Evidence-based Complementary and Alternative Medicine 2, no. 2 (2005): 173 – 78. Horrigan, Bonnie. “Conversations: Therese Schroeder-Sheker Music Thanatology and Spiritual Care for the Dying.” Alternative Therapies in Health and Medicine 7, no. 1 (January 2001): 68 –77. Iglehart, John K. “A New Era of For-Profit Hospice Care — The Medicare Benefit.” The New England Journal of Medicine 360, no. 26 (June 25, 2009): 2701 – 3. Kearney, Michael. A Place of Healing: Working with Suffering in Living and Dying. Oxford: Oxford University Press, 2000. Kübler-Ross, Elisabeth. Death: The Final Stage of Growth. Englewood Cliffs, N.J.: Prentice-Hall, 1975. The Laughing Man. “Musical Sacramental Midwifery: The Laughing Man Interviews Therese Schroeder-Sheker.” The Laughing Man 8, no. 1 (1988): 40 – 43. Leeds, Joshua. Sonic Alchemy: Conversations with Leading Sound Practitioners. Sausalito, Calif.: InnerSong Press, 1997. Lewis, Milton J. Medicine and Care of the Dying: A Modern History. New York: Oxford University Press, 2007. Munro, S., and B. Mount. “Music Therapy in Palliative Care.” Canadian Medical Association Journal 119, no. 9 (November 4, 1978): 1029–34. Murfin, Sharon, and Mel Haberman. “Building the Ship of Death: Part I.” Explore: The Journal of Science and Healing 3, no. 6 (November/ December, 2007): 619 – 22. Murfin, Sharon, and Mel Haberman. “Building the Ship of Death: Part II.” Explore: The Journal of Science and Healing 4, no. 1 (January/ February 2008): 70 – 73. Nouwen, Henri J. M. Reaching Out: The Three Movements of the Spiritual Life. New York: Doubleday, 1966. Nuland, Sherwin B. How We Die: Reflections on Life’s Final Chapter. New York: Vintage Books, 1993. Paxton, Frederick S. “From Life to Death.” Connecticut College Magazine (May/ June 1994): 26 – 29. Paxton, Frederick S. Liturgy and Anthropology: A Monastic Death Ritual of the Eleventh Century. Missoula, Mont.: St. Dunstan’s Press, 1993. Paxton, Frederick S. A Medieval Latin Death Ritual: The Monastic Customaries of Bernard and Ulrich of Cluny. Missoula, Mont.: St. Dunstan’s Press, 1993. Peck, Mona. “An Interview with Therese Schroeder-Sheker.” The Harp Therapy Journal 14, no. 1 (Spring 2009): 10 – 17. Rosenberg, Kurt. “Musically Midwifing Death.” Common Boundary 8, no. 5 (September/October 1990): 9 – 12. Schade, Leah Delight. “Just What the Doctor Ordered.” The Harp Column 6, no. 2 (November/December 1998): 12 – 25.

Bibliography

149

Schroeder-Sheker, Therese. “Letting Go: The Paradox of Cultural Competence in End-of-Life Care.” Explore: The Journal of Science and Healing 3, no. 2 (March/ April 2007): 161 – 63. Schroeder-Sheker, Therese. “Musical-Sacramental-Midwifery: The Use of Music in Death and Dying.” In Music and Miracles, ed. Don Campbell. Wheaton, Ill.: Quest Books, 1992. Schroeder-Sheker, Therese. “Music for the Dying: A Personal Account of the New Field of Music Thanatology — History, Theories, and Clinical Narratives.” Advances, The Journal of Mind-Body Health 9, no. 1 (Winter, 1993): 36 – 48. Schroeder-Sheker, Therese. “Narrative Medicine and Unresolved, End-of-Life Longing.” Explore: The Journal of Science and Healing 2, no. 2 (March 2006): 169 – 71. Schroeder-Sheker, Therese. “Preface.” In Liturgy and Anthropology: A Monastic Death Ritual of the Eleventh Century, by Frederick S. Paxton, ix–xiii. Missoula, Mont.: St. Dunstan’s Press, 1993. Schroeder-Sheker, Therese. “Preface.” In A Medieval Latin Death Ritual: The Monastic Customaries of Bernard and Ulrich of Cluny, by Frederick S. Paxton, xi–xiii. Missoula, Mont.: St. Dunstan’s Press, 1993. Schroeder-Sheker, Therese. “Prescriptive Music: Sounding Our Transitions.” Explore: The Journal of Science and Healing 1, no. 1 (January 2005): 57–58. Schroeder-Sheker, Therese. “Shaping a Sanctuary with Sound: Music-Thanatology and the Care of the Dying.” Pastoral Music 22, no. 3 (February–March 1998): 26 – 41. Schroeder-Sheker, Therese. Transitus: A Blessed Death in the Modern World. Missoula, Mont.: St. Dunstan’s Press, 2001. Shelemay, Kay Kaufman. “Response: Thinking about Music and Pain.” In Pain and Its Transformations: The Interface of Biology and Culture, ed. Sarah Coakley and Kay Kaufman Shelemay. Cambridge, Mass.: Harvard University Press, 2007. Siebold, Cathy. The Hospice Movement: Easing Death’s Pains. New York: Twayne Publishers, 1992. Stoddard, Sandol. The Hospice Movement: A Better Way of Caring for the Dying. London: Jonathan Cape, 1978. Turner, Victor Witter. The Ritual Process: Structure and Anti-Structure. Ithaca, N.Y.: Cornell University Press, 1977. Tyler, Helen M. “The Music Therapy Profession in Modern Britain.” In Music as Medicine: The History of Music Therapy since Antiquity, ed. Peregrine Horden. Brookfield, Vt.: Ashgate, 2000. van Gennep, Arnold. The Rites of Passage. Chicago: University of Chicago Press, 1960. Veatch, Robert M. Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge. Oxford, New York: Oxford University Press, 2009. West, Martin. “Music Therapy in Antiquity.” In Music as Medicine: The History of Music Therapy since Antiquity, ed. Peregrine Horden. Brookfield, Vt.: Ashgate, 2000. Zaleski, Philip, Paul Kaufman, and Daniel Goleman. Gifts of the Spirit: Living the Wisdom of the Great Religious Traditions. San Francisco: HarperSanFrancisco, 1997.

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Index

Adams, Kay, 62 – 63 Anam cara, 27 – 28 Anointing, 25, 33, 118 – 19 Applegate HomeCare and Hospice, Ogden, UT, 70 Applegate HomeCare and Hospice, Salt Lake City, UT, 54 Barber, Betty, 87, 90 Beauty, 4, 14, 39, 91 – 92, 101, 117, 133, 134 – 37, 139 – 40; and clinical narrative, 35; in Cluny death rituals, 26; lacking in people’s lives, 135; in medicine, 108 – 9, 116, 122; particular music vigil, 61, 62 – 66, 69, 139 Boetheius, 14 – 15 Bol, Hilly, 23 Burgard, Annie, 43, 54, 86, 88 – 89, 133 – 34 Cabot, Barbara, 79 – 80 Catholic hospitals, 102, 121 Chalice of Repose Project, 19, 45, 75 – 76, 81, 82, 91, 94, 95, 97, 103, 105 – 6; founding of, 13, 23 – 25; School of Music-Thanatology, 3 – 4, 5 – 7, 23, 44, 83, 86, 90, 91, 93, 98, 107, 136 Chant, 24 – 26, 89 Chaplaincy, 89 – 90, 113, 114; relationship with music-thanatology, 104, 117 – 19 Clinical narrative, 34 – 35, 42 Cluny, death rituals, 13, 15, 24 – 27 Cohn, Sharilyn, 38, 46, 80 – 81

Confident guest, 40 – 41, 131 Contemplative musician, 10, 27, 29, 76, 93 – 94, 102 Damon (Athenian intellectual), 14 Death and dying: connection to birth, 133; denial of, 128; fear of, 86, 126 – 29, 130, 137 – 39; individuality of each patient, 6, 39, 72, 83, 129 – 30, 138; as a medical failure, 40, 110, 134; music-thanatologist as source of education, 130 – 32; as a natural process, 132 – 34 Death with Dignity Act, 121 The Denver Hospice, Denver, CO, 62, 67, 115, 117 Dowdy, Ann, 54 – 55 Duncan, Lawrence, 93 – 95 EagleWolfe, Wendy, 116 – 17 Education, for music-thanatologists, 5 – 7, 44 – 46 English, Woodruff, 116 Fay, Judy, 44, 87, 90 – 92 Fiasca, Anna, 37, 39 – 40, 57 – 59, 80, 85 – 86 Franz, Jane, 45 – 46, 95 – 96 Funding, for music-thanatology, 102 – 8 Good death, 40, 108, 110, 121 Grace, 4, 11, 64, 82, 118, 122 Grief, 38, 62 – 63, 71

152 Harp, 4 – 5, 9, 14, 19, 38, 42 – 44, 114 Harriss, Sile, 98 – 99, 136 – 37 Healing, 7 – 8, 68, 99, 106, 110, 116 – 18, 120, 122, 126, 134; and hope for a cure, 58 – 59; and ritual use of music, 14 – 17 Helldorfer, Theresa, 117 Hope, 16 – 17, 27, 58, 116 Hospice, 8 – 10, 19 – 22 Hospice of Sacred Heart, Eugene, OR, 101, 102, 105, 109, 110, 113, 114, 119, 121 Howe, Jeri, 92 – 93 Interdisciplinary team, music thanatologist as member of, 34, 40 – 41, 61 – 62, 133 – 34 Jackson, Rose, 111 Jones, Christine, 70 – 71, 78 – 79, 135 – 36 Kübler-Ross, Elisabeth, 21, 91, 132 LaForge, Sandy, 40 Lahey Clinic Medical Center, Burlington, MA, 10 Lamm, Laura, 106, 139 Lane Community College, 45 – 46, 86 Lazarus, Howard, 109, 111 Lee, Gary, 109, 116, 122 Letting go, 36, 39, 55 – 61 Liminal personae, 15 Madej, Donna, 37, 138 – 39 Maleegrai, Malin, 65 – 66 McCallum, Janelle, 115 McCarthy, Charlie, 84 – 85 McCarthy, Loraine, 83 – 85, 104 Meaning, 99, 139 – 40; in caring for dying patients, 76 – 77, 88 – 89, 109 – 10; in the dying process, 14, 18, 37, 40, 83, 128 – 29 Medical chart, 34, 112 – 13; retrospective chart audit, 28 Medical culture, 13, 19, 21, 40; introducing music-thanatology into, 101 – 6 Medicare hospice benefit, 20, 21 – 22 Mid-Columbia Medical Center, The Dalles, OR, 57, 86 Midwest Palliative and Hospice CareCenter, Glenview, IL, 28, 50, 63, 65, 66, 103, 106 – 8, 111, 112, 114, 119, 120, 130 Midwife, 33, 132, 135, 139 – 40 Ministry, 7, 10 – 11, 76, 85, 88 – 89, 133

Index Monastic death ritual. See Cluny Monastic medicine, 13, 24 – 25 Mones, Stewart, 101, 110, 122, 127 Moses, 78, 81 Munro, Gregory, 75 – 76 Musical-sacramental-midwifery, 24 Musicmakers Kit’s, 4 Music, raw materials, 36, 39; unmetered, 58 Music-Thanatology Association International (MTAI), 38 – 39, 44 – 45, 89, 94, 139 Music-thanatology: as accompaniment, 36, 38, 50 – 51, 130, 135; Australia, 27 – 28; in lieu of medication, 108, 109 – 13; with massage, 119 – 20; in the media, 79, 80, 82, 88; as a medical modality, 24, 28, 111 – 15; changing medical culture, 108 – 9, 120 – 22, 130, 133; using music in place of words, 40, 49, 104, 116, 117, 119, 129; Netherlands, 23; lack of religious identity, 26, 76 – 77, 102, 114; research, 27 – 28. See also Education Music therapy, 8, 13, 17 – 19, 23, 88, 107 – 8 Music vigil: cultural or religious identity and, 8 – 9, 39 – 40, 58 – 59; imminent, 41 – 42, 64, 66, 112, 130 – 32; impact on staff, 10, 65 – 70, 105, 107, 111, 114 – 15, 116 – 17, 120, 122 – 23; meaningful, 61, 66, 138; peaceful, 27, 49, 60 – 61, 64, 111, 116, 135; processing, 41 – 42. See also Beauty; Stories Mystery, 6, 11, 40, 83, 113, 118; of death, 67, 99, 135, 139 – 40 Newson, Mark, 114 – 15, 121 – 22 Olsen, Fr. Kenneth, 118 – 19 Pain, 16 – 17, 28, 50, 92, 121, 122, 126; hospice focus on pain management, 13, 21; relief in music vigil, 54, 59, 64 – 65, 67 – 68, 110, 111, 113, 116 Palliative medicine, 22, 33, 45 Palmetto Health Hospitals, Columbia, SC, 43, 54 Partenheimer, Andrea, 64 – 65 Pasquesi, Margaret, 63 – 64, 81 – 83, 107, 130 – 32 Pastoral care. See Spiritual care Paxton, Frederick S., 1 – 2, 13 – 14, 15, 25 – 26

Index Pederson, Tony, 50 – 52, 66 – 67, 97 – 98, 107, 130 – 31 Plouff, Gary, 38, 69 Prescriptive music, 27, 35 – 40 Prescriptive process, 6, 35 – 40, 51 – 52, 135; informed intuition, 37; patient leads or directs, 39, 41, 113; singing, 38 Presence, as quality of music thanatology, 27 – 28, 38, 63, 66, 75, 92, 96, 131 – 32 Providence Portland Medical Center, Portland, OR, 64, 98, 102, 103, 105 – 6 Providence Regional Medical Center, Everett, WA, 55, 92, 102 Providence St. Vincent Medical Center, Portland, OR, 102, 103, 105 – 6, 109, 111, 116, 139 Pyne, Mel, 120 Pythagoras, 14 Ramo, Russell, 119 – 20 Reimbursement, for music-thanatology. See Funding Reimbursement, for music therapy, 18 – 19 Ripp, Sr. Vivian, 44, 69, 84, 87, 89 – 90, 104, 118 Rites of passage, 15 Ritual, 14 – 17, 25 Roberts, Peter, 27 – 28, 94 Romanchek, Nancy, 63 – 64, 111 Rossiter, Anne, 107 – 8 Roter, Bonnie, 66 – 67, 114

153 the field of music-thanatology, 13, 23 – 26, 44, 139; vocation, 75, 76 – 77 Seasons Hospice and Palliative Care, 8 – 10 Sheehan, Mary, 107, 120 Silence, 9 – 10, 27 – 28, 36, 41, 63, 65 Simmons, Adrienne, 105 – 6 Simon, Pam, 113, 115 Sojourn (music-thanatology practice), 90 Sounds for Healing, 105 Spiritual care, 104, 117 – 18, 121; of the dying, 20 – 21 Stories of music vigils, 6, 8 – 9, 125 – 26, 135; expression of family tenderness, 50 – 54; family describes, 52 – 54, 55 – 57, 59 – 61; first vigil, 23; learning to let go, 55 – 61; patient voices, 27, 54 – 55; staff describes, 62 – 64, 65 – 70; surprise, 70 – 72; tension and pain, 61 – 65 Strings of Compassion (music-thanatology practice), 68 – 70, 105 Suffering, 14, 34, 36, 37, 102, 108, 126, 128, 132 – 33, 134, 136, 139; and dying process, 27, 40, 42, 55 – 56, 92; relieved by music vigil, 49, 61 – 65 Suffering, and vocation. See Vocation Swenson, Ginny, 67 Therapeutic music, 19 Trank, Leah, 68 – 70 Twaddle, Martha, 106 – 8, 112, 120 Unbinding, 28, 35, 58, 62

SacredFlight (music-thanatology practice), 38, 80, 103 Sacred Heart Medical Center, Eugene, OR, 38, 45, 68, 84, 102, 103 – 5, 114, 116, 118, 120 – 21 Sacred Heart Medical Center, Spokane, WA, 34 – 35, 37, 102, 138 Sacred space, 10, 16, 41, 71, 109, 115 – 20 St. John of God Hospital, Geelong, Australia, 27 St. Patrick Hospital, Missoula, MT, 3, 5, 6, 24, 38, 44, 89 – 90, 98, 103, 104 Sasnow, Michael, 137 – 38 Saunders, Dame Cicely, 20 – 21 Scheri, Robert, 103 – 5 School of Music-Thanatology. See Chalice of Repose Project Schroeder-Sheker, Therese, 33, 36, 39, 40, 43, 78 – 79, 89, 94, 97, 98, 106; founding

Vigil. See Music vigil Viglione, Gloria, 62 – 63, 67 Vocation: called at the wrong time, 83 – 86; and destiny, 93 – 94; encountering suffering, 82 – 83; instant call, 78 – 83; lack of musical experience, 90 – 92, 95; related to current profession, 86 – 92; spiritual call, 92 – 96 Volpe, Rev. Gina, 119 Waggoner, David, 46, 120 – 21, 123 Walker, Claudia, 55, 134 – 35 Werner, Mary, 38, 94 White, Lawrence, 44 Witness: to the dying process, 6, 92, 99, 130, 138, 139 – 40; in the music vigil, 67, 137; to suffering, 65, 77, 132, 133 – 34, 136

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About the Author JENNIFER L. HOLLIS is a music-thanatologist at the Lahey Clinic Medical Center in Burlington, Massachusetts, and is the president of the Music-Thanatology Association International. She received a master of divinity from Harvard Divinity School.