Images
Supplemental Files :
- Supplemental File 1 [above] : Introducing Diana [Diana Squires Edelman] video [
- Supplemental File 2: Lark Reading Diana's Memorial Poem audio
[Download these supplemental files at the bottom of this page]
-------------------------------------------------
Dr. Elise Lark is a 2014 graduate of the PHD Program in Leadership and Change at Antioch University.
Photo Credit: Will Weber
Dr. Elise Lark [Center] with her Dissertation Committee at her Dissertation Defense, Yellow Springs, Ohio, August 2014
L-R : Dr. Alan E. Guskin, Committee Member; Dr. Elise Lark; Dr. Carolyn Kenny, Dissertation Chair ,
Not Pictured: Dr. Carol S. Weisse, Committee Member, Dr. Timothy E. Quill, External Reader
Below: Figure 6.1 Faces Matter: Paricipants from Place-based Portraits
Photo Credit: Will Weber
Keywords
dying and death, community-based end-of-life residence, hospice, home, care setting, care culture, terminal liminality, portraiture, arts-based research, terminal cancer
Document Type
Dissertation
Publication Date
2014
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 (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
Recommended Citation
Lark, E. (2014). Making Space for Dying: Portraits of Living with Dying. https://aura.antioch.edu/etds/151
Introducing Diana - MP4
Lark_Reading_Diana's_Memorial_Poem_audio_mp3.mp3 (3046 kB)
Elise Lark Reading Diana's Memorial Poem - MP3
Included in
Community-Based Research Commons, Community Psychology Commons, Family, Life Course, and Society Commons, Geriatrics Commons, Gerontology Commons, Medicine and Health Commons, Oncology Commons, Public Health Commons, Social Psychology Commons, Social Work Commons
Comments
Photo Credit:Will Weber
Dr Elise Lark is an Oncology Social Worker and a community leader in end-of-life care. Elise discovered her calling in 1998 as a participant in a hospice volunteer training and immediately decided to return to school with the vision of becoming a hospice social worker. Since 2006, she has been a staff member of the Oncology Support Program at the HealthAlliance Hospital of the Hudson Valley (HAHV), in Kingston, New York, a program recognized nationally for its innovation. Her work focuses on individuals and families living with metastatic cancer and those facing death. In 2012, the HAHV honored her with the Outstanding Social Worker award. More recently, she has been involved in an initiative to develop palliative care services at the hospital and is a member of the palliative care team. Her larger vision is to reintegrate the end-stage of life into the circle of life and our everyday social world by returning care of the dying to families and communities, enabling people to feel more at-home with death.
To this end, Elise is the Visionary leader and Co-Founder of Circle of Friends for the Dying (CFD), a not-for-profit organization established in 2012.The mission of CFD is to bring compassionate, competent, end-of-life care to the dying and their families.The central goal of CFD is to establish and maintain the first Home for the Dying in the Mid-Hudson Valley.Earlier doctoral research for a Change Project, during which she discovered the Homes for the Dying, a model unique to NY State, evolved into a Life Project and a shared dream amongst a committed team of healthcare professionals and community leaders.Through her fieldwork, she has observed the benefits and transformative capacity of community-centered care of the dying for dying persons, their kin, and lay caregivers.
Elise is also a licensed massage therapist and has maintained a practice in the healing arts since 1988.She developed SYNtegration Therapy, uniquely blending somatic and psychotherapeutic modalities with the expressive arts.