The Secrets of the Backstage: Directing Death Vigils.

Abstract

Background: The majority of hospice patients are over the age of 65, and the majority of hospice deaths occur in private homes. As a hospice patient's disease progresses, death becomes imminent and family and friends gather around to say good-bye. These private vigils are the culmination of the hospice experience and reflect both the strengths and the challenges surrounding hospice care. The purpose of this study was to explore the stories and experiences of hospice staff with death vigils, unveiling the secrets of home deaths and identifying barriers to a good death. Methods: Qualitative analysis of interviews with 25 hospice staff representing 11 different hospice agencies explored the emotions and challenges of directing and managing the vigil experience. Based on Erving Goffman's dramaturgical model, the experience is explored in depth to unveil a private experience in hopes of enlightening the public on what death in the home looks and feels like. Co-coding of stories and validation of findings by hospice nurses and physicians assure the trustworthiness of the data. Results: Hospice staff share narratives related to family and caregiver burden, challenges with symptom management, frustrations with staffing shortages, and administrative burdens surrounding the experience of death vigils. Conclusions: The family and hospice clinician's experiences with the final act of dying at home are sometimes challenged by the intermittent nature of home care during the final days.