University of South Florida Scholar Commons Graduate Theses and Dissertations Graduate School 8-18-2014 Changing Landscapes: End-of-Life Care & Communication at a Zen Hospice Ellen W. Klein University of South Florida, [email protected] Follow this and additional works at: https://scholarcommons.usf.edu/etd Part of the Health Communication Commons Scholar Commons Citation Klein, Ellen W., "Changing Landscapes: End-of-Life Care & Communication at a Zen Hospice" (2014). Graduate Theses and Dissertations. https://scholarcommons.usf.edu/etd/5364 This Dissertation is brought to you for free and open access by the Graduate School at Scholar Commons. It has been accepted for inclusion in Graduate Theses and Dissertations by an authorized administrator of Scholar Commons. For more information, please contact [email protected]. Changing Landscapes: End-of-Life Care & Communication at a Zen Hospice by Ellen W. Klein A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Communication College of Arts & Sciences University of South Florida Major Professor: Lori Roscoe, Ph.D. Darrell Fasching, Ph.D. David Payne, Ph.D. Frederick Steier, Ph.D. Date of Approval: August 18, 2014 Keywords: Health, Community, Spirituality, Ethics, Caregiving, Dying Copyright © 2014, Ellen W. Klein Dedication For Ann and Avigayil. Acknowledgments I am so very grateful for and I would like to thank Dr. Lori Roscoe, Dr. David Payne, Dr. Fred Steier, Dr. Darrell Fasching, and Dr. Jim Paul for their incredible mentorship and guidance. I would also like to recognize Dr. Jane Jorgenson, Dr. Mariaelena Bartesaghi, and Dr. Ludovico Balducci for their great and gracious support. I owe special thanks and much gratitude to Ann and MyoO, and all of the hospice volunteers, who both supported this research and welcomed me to their community. Most importantly I would like to thank the patients and their families who continue to teach me so very much and without whom this would not have been possible. Finally, I thank Zoe DuPree Fine for her technical prowess and kind support throughout. i Table of Contents List of Figures ................................................................................................................................ iii Abstract .......................................................................................................................................... iv Chapter One: Entering the Landscape .............................................................................................1 A. Attending to the Landscape.............................................................................................3 B. Getting Acquainted & Exploring the Hospice Landscape ..............................................4 C. Thinking Narratively .......................................................................................................8 D. Narrating a "Good Death" .............................................................................................10 E. Aims of the Project ........................................................................................................12 F. Research Almanac .........................................................................................................13 Chapter Two: Dying as Spiritual, Rhetorical, and Communal Landscapes: .................................17 A. Exploring the Spiritual Landscape ................................................................................18 a. Spiritual distress. ..................................................................................................22 b. Moral distress. ......................................................................................................24 c. Suffering .............................................................................................................27 B. Exploring the Rhetorical Landscape .............................................................................29 a. Appraisals & reappraisals ....................................................................................30 b. Rhetorical acts of healing.....................................................................................31 Blessing & curse. .........................................................................................33 Fight & dance ...............................................................................................36 C. Exploring the Relational & Communal Landscape.......................................................40 a. Relational landscapes ...........................................................................................40 b. Communities of practice. .....................................................................................42 c. Buddhist community. ...........................................................................................43 Chapter Three: Methodologies & Methods ...................................................................................49 A. Methodology: Ethics of Care ........................................................................................49 a. Care-centered relationship: my "ethics of care" story ..........................................52 b. Reciprocity & relationship building: setting the scene at the hospice house .............................................................................................57 B. Methods .........................................................................................................................59 a. Feminist research .................................................................................................59 b. Framing the research through inquiry ..................................................................64 c. Informed consent ..................................................................................................67 d. Data collection .....................................................................................................69 e. Participant observation .........................................................................................71 f. Interviews .............................................................................................................73 g. Data analysis ........................................................................................................74 ii h. Transitioning to seasonal landscapes ...................................................................76 Chapter Four: Autumn ...................................................................................................................78 A. Who We Are, Where We Are .......................................................................................80 a. What's in a name? ................................................................................................80 b. The island hospice community of care ................................................................83 c. Five precepts ........................................................................................................87 d. Negotiations .........................................................................................................89 e. Special communication ........................................................................................91 f. Placing parentheses...............................................................................................94 Chapter Five: Winter......................................................................................................................97 A. Ritual & Improvisation .................................................................................................98 a. Going to grandma's ............................................................................................105 b. Ringing the inkin................................................................................................108 c. Red Ducatis ........................................................................................................110 d. Taking advice .....................................................................................................112 e. Birth & death plans ............................................................................................113 f. "Do you meditate?" ............................................................................................115 g. Meeting with the Roshi ......................................................................................118 Chapter Six: Spring ......................................................................................................................125 A. The Guru .....................................................................................................................128 B. "No stone unturned" ....................................................................................................131 C. Resurrection & Enlightenment ....................................................................................134 D. "Whatever walks in our door" .....................................................................................139 Chapter Seven: Summer ..............................................................................................................143 A. Reflection & Discussion .............................................................................................144 a. Limitations .........................................................................................................147