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2014
Making Space for Dying: Portraits of Living with
Dying
Elise Lark
Antioch University - PhD Program in Leadership and Change
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Lark, Elise, "Making Space for Dying: Portraits of Living with Dying" (2014). Dissertations & Teses. 151.
htp://aura.antioch.edu/etds/151
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MAKING SPACE FOR DYING:
PORTRAITS OF LIVING WITH DYING
ELISE LARK
A DISSERTATION
Submitted to the Ph.D. in Leadership and Change Program
of Antioch University
in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
October, 2014
This is to certify that the dissertation entitled:
MAKING SPACE FOR DYING: PORTRAITS OF LIVING WITH DYING
prepared by
Elise Lark
is approved in partial fulfillment of the requirements for the degree of Doctor of Philosophy in
Leadership and Change.
Approved by:
________________________________________________________________
Carolyn Kenny, Ph.D., Chair date
________________________________________________________________
Alan E. Guskin, Ph.D., Committee Member date
________________________________________________________________
Carol S. Weisse, Ph.D., Committee Member date
________________________________________________________________
Timothy E. Quill, M.D., External Reader date
Copyright 2014 Elise Lark
All rights reserved
Acknowledgements
For my mother, who is my first home;
for Will, who is my present home;
for my first daughter, Jemma, who also helps others in need of a good home;
for Selena, my second daughter, whose birth-death was my initiation.
For Carolyn Kenny, my dissertation chair, who recognized that art is home to my true nature and
who held the space for my homecoming;
for Al Guskin, my mentor, dissertation committee member, and surrogate “grandfather,”
who believed in me and made me feel at-home at Antioch University;
for members, past and present, of the Oncology Support Program at HealthAlliance Hospital,
who have been my teachers of living with life-threatening illness and living with dying;
and for all those near and wide in search of a final good home.
I would like to thank the Founders and Directors of the Homes for the Dying who have
generously responded to countless questions over the past several years in support of my
research and the development of Circle of Friends for the Dying (CFD).
I also give thanks to the Board of CFD, for trusting my vision and for carrying the dream.
I am grateful to Will Weber, who served as travel companion and photographer on all my field
trips, for enhancing my travels and research. Finally, I would also like to thank my copy editors,
Shannon L. Kenny and Kim Yost, and style editor, Jayne Alexander, for their support.
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Abstract
In Making Space for Dying: Portraits of Living with Dying, I describe the everyday lived
experience of dying and the care culture within freestanding, community-based, end-of-life
residences (CBEOLR) utilizing portraiture and arts-based research. I craft four case studies into
“portraits,” based on interviews, on-site visits, up-close observation, and field notes. In the
person-centered portraits, I reveal the inner landscape of two terminally ill women, with data
represented in poetry. In the place-centered portraits, I “map” the social topography of two
CBEOLRs to illustrate how lives and care of the dying are emplaced, from the perspectives of
community leaders, residence staff, volunteers, family members, and residents, with data
presented as aesthetic (storied) narrative. Collage and photographs further enhance the text.
Little has been written about the meaning of home and the centrality of a home-like environment
in the healthcare milieu, specifically in the context of the end-of-life care setting. My research
helps to fill a gap in understanding care culture in the freestanding CBEOLR, a care-setting
genre rarely examined in the literature. Additionally, my study develops the notion of a “good
place to die” and introduces the Home for the Dying, a CBEOLR model unique to New York
State. Lastly, building on the literature on liminality, and informed by clinical practice as an
oncology social worker, my study specifically highlights the terminal stage of cancer and
introduces the concept terminal liminality, characterized by descent. Two broad dimensions
emerged: Nesting-in-Being and Nesting-in-Place. Together, these dimensions created a
framework for exploring care culture and ways of working with existential suffering. The bird’s
nest, as a utilitarian though temporal structure, provided an elegant metaphor for the special end-
of-life residence. Three linked sub-themes related to care culture emerged, Nest of Simple
Things (meaning making), Nest of Belonging (community making), and Nest of Everydayness
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(home making). Implications for leading change in end-of-life care highlight an initiative to
establish and maintain a CBEOLR in my own community. This dissertation contains embedded
jpg images and two supplemental files [MP4 video, MP3 audio]. The electronic version of this
Dissertation is at AURA, http://aura.antioch.edu/etds/ and OhioLink ETD Center,
www.ohiolink.edu/etd
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Table of Contents
List of Tables .................................................................................................................................. x
List of Figures ................................................................................................................................ xi
List of Supplemental Video Files ................................................................................................ xiii
Prologue: Mwezi’s Plea ............................................................................................................... xiv
Chapter I: Introduction .................................................................................................................... 1
Making Space for Dying ..................................................................................................... 2
Place: The Missing Link ..................................................................................................... 4
The Hidden and the Between .............................................................................................. 6
Care Setting and Care Culture ............................................................................................ 7
Returning Death Back Home: Communal Solutions ........................................................ 10
Research Purpose, Questions, and Gaps in the Literature ................................................ 11
Overview of Methodology ................................................................................................ 12
Chapter Summaries ........................................................................................................... 15
Chapter II: Literature Review ....................................................................................................... 17
How and Where We Die: An Overview of Death in America ......................................... 17
Inappropriate Spaces for the Dying .................................................................................. 20
Hospitals and Nursing Homes. ............................................................................. 21
Hospice in America ........................................................................................................... 23
The Wish to Die at Home. .................................................................................... 25
The Sociocultural Construction of Illness and Dying ....................................................... 27
The Central Function of Culture: Alleviation of Death Anxiety. ......................... 27
Social Constructionism. ........................................................................................ 28
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The Meaning of Suffering. .................................................................................... 29
Social Death, the Dying Self, and the Dying Body. ............................................. 31
Dying as Hard Work. ............................................................................................ 33
Illness and End-of-Life Narratives .................................................................................... 37
Narratives and the Production of Culture and Medical Subculture. ..................... 37
The Capacities of Stories. ..................................................................................... 40
Socio-Narratology: What Stories Do. ................................................................... 40
Stories From the Borderlands. .............................................................................. 41
Community and Communitas. .............................................................................. 41
To Speak or Not to Speak: Narratives in the Clinical Setting and Beyond. ......... 43
The Role of Meaning-Making .......................................................................................... 46
Illness as a Crisis of Meaning. .............................................................................. 47
Meaning–making as a Social and Existential Process. ......................................... 48
Empowerment Versus Diminishment. .................................................................. 49
The Meaning of Time. .......................................................................................... 50
Adaptability. .......................................................................................................... 50
The Hidden Dimensions: Existential Suffering and Liminality ....................................... 52
Existential Suffering and Well-Being. .................................................................. 52
Psychic Rupture: The Existential Ordeal. ............................................................. 53
The Psychospiritual Mechanics of Coping and Meaning-Making. ...................... 54
Liminality: Land of the Lost ............................................................................................. 57
Making Space for Dying: The Role of Care Setting and Care Culture ............................ 61
Meaning Emplaced. .............................................................................................. 62
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Institutional Care Setting Culture. ........................................................................ 65
The Liminal, the Sacred, and the Everyday: Hospice Emplaced .......................... 66
Hospice Emplaced Globally. ................................................................................ 69
Home-Like Care Settings. ..................................................................................... 70
Chapter III: Methodology ............................................................................................................. 74
Who Am I? ........................................................................................................................ 74
What Is Art? ...................................................................................................................... 75
What Is Creativity? ........................................................................................................... 77
Principles and Attributes of ABR ..................................................................................... 78
Poetry as a Way of Knowing and Expression. ...................................................... 80
Collage as a Way of Knowing and Expression. .................................................... 83
Principles and Attributes of Portraiture ............................................................................ 85
Goodness. .............................................................................................................. 86
Intimacy. ............................................................................................................... 86
Resonance. ............................................................................................................ 87
A People’s Scholarship. ........................................................................................ 88
Common Attributes of Portraiture and ABR. ....................................................... 89
Research Design ................................................................................................................ 90
Participant and Site Selection. .............................................................................. 91
Scope and Limitations. .......................................................................................... 93
Prior Learning: Observing Essence. ..................................................................... 95
Chapter IV: Portraits ..................................................................................................................... 97
Illuminations: Portrait of Diana ........................................................................................ 97
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