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Making Space for Dying: Portraits of Living with Dying

Lark, Elise
http://rave.ohiolink.edu/etdc/view?acc_num=antioch1413217166

Abstract Details

2014, Ph.D., Antioch University, Leadership and Change.
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
Carolyn Kenny, PhD (Committee Chair)
Alan E. Guskin, PhD (Committee Member)
Carol S. Weisse, PhD (Committee Member)
Timothy E. Quill, MD (Other)
336 p.
Aging; Behavioral Sciences; Families and Family Life; Gerontology; Health Care; Individual and Family Studies; Medicine; Oncology; Public Health; Social Psychology; Social Work
dying and death; community-based end-of-life residence; hospice; home; care setting; care culture; terminal liminality; portraiture; arts-based research; terminal cancer

Recommended Citations

Citations

  • Lark, E. (2014). Making Space for Dying: Portraits of Living with Dying [Doctoral dissertation, Antioch University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=antioch1413217166

    APA Style (7th edition)

  • Lark, Elise. Making Space for Dying: Portraits of Living with Dying. 2014. Antioch University, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=antioch1413217166.

    MLA Style (8th edition)

  • Lark, Elise. "Making Space for Dying: Portraits of Living with Dying." Doctoral dissertation, Antioch University, 2014. http://rave.ohiolink.edu/etdc/view?acc_num=antioch1413217166

    Chicago Manual of Style (17th edition)

antioch1413217166
439
© 2014, all rights reserved.
This open access ETD is published by Antioch University and OhioLINK.