This dissertation explores the storytelling capacities of aesthetic, embodied approaches to hospice care. The action-based nature of this research enabled me to design and implement art-based storytelling programs, called Enrichment Programs, at Allegiance Hospice in Jackson, Michigan. Through engagement in these aesthetic and embodied experiences (i.e., music, art, photography, life review), as well as the use of multisensory forms of narrative development and representation, patients, families, volunteers, and care providers discovered new ways of embracing the creative and charismatic spirit upon which the hospice movement was founded. As a result and in line with the hospice mission, the quality of participants' lives were enhanced and compassionate, edifying relationships were cultivated.
Guided by narrative and aesthetic theoretical sensibilities, I volunteered for one year as the director of the Enrichment Programs which included designing and implementing art-based storytelling experiences grounded in theory and answerable to lived experience, conducting training seminars for new and existing volunteers, and making patient and family visits as assigned. During these activities, I collected discourse through participant observation, in-depth interviews, and review of artistic artifacts. Initially, two research questions guided my efforts: How do the enrichment programs provided by Allegiance Hospice foster storytelling in families during end-of-life care? How do participants narrate life experiences during Enrichment Programs provided by Allegiance Hospice? After spending several months at Allegiance Hospice, my fieldwork led me to explore an additional question: What is the role of storytelling and creative activities in helping participants negotiate lived contradictions and challenges of Hospice work?
My results are organized into four motifs, woven together by the narrative thread of creativity and charisma: Hospice ... A Movement with Momentum, Enrichment Programs ... Meaningful Moments and Lasting Legacies, Creative Pursuit of Possibilities in Interdisciplinary Team Meetings, Discovering a Shared Language ... Emplotment of Life, Loss, and Hope. Ultimately, I argue that (1) an aesthetic, embodied approach to hospice care fosters meaningful storytelling occasions, (2) the arts transcend constraining text-based conceptions of what counts as narrative, and (3) aesthetic engagement in the lifeworlds of patients creates space for hospice volunteers and care providers to manage the inherent contradictions in their work.