Exploring Emotions Near Death in a Social Model Hospice Residential Care Home Setting

Social model hospice residential care homes (RCHs) are community-run spaces where terminally ill individuals with a prognosis of three months or less can go to receive end-of-life care. These homes serve members of the community facing housing or caregiver instability and provide the services and housing that is not covered under the Hospice Medicare Benefit.  Hospice provides services in RCHs as they would in a private residence, and volunteers from the community work alongside trained staff to provide bedside care. To ensure continuity of care across multiple caregivers, care decisions are documented 24/7 at the end of each shift, providing a rich source of information for understanding care at the end of life when dying occurs outside of a medical setting. The aim of this study was to review and analyze caregiver narratives in order to capture the various emotions that hospice patients experience during the dying process when diagnosed with brain-related conditions (i.e. brain metastases, glioblastoma, or malignant brain neoplasms).  From the 27 cases who died at the RCH of brain-related conditions, I selected five to describe due to their powerful caregiver statements and continuity of emotion. The end-of-life themes that emerged through case analyses were fear, frustration, love, joy, and peace. This presentation will outline the process used to describe various emotions, as well as the approach for capturing these emotions into a media presentation aimed at increasing death literacy.  I plan to demonstrate my Scholar’s project capturing excerpts of patients’ final journeys organized into prose and provide an opportunity for audience feedback to improve community understanding of the dying process when it occurs in a home setting.