“I Finally Feel Like I Have Help. Before, I Was Completely Alone”

Abstract

Little is known about community-based transitions to home hospice care. We used a Straussian grounded theory approach to understand the basic social process of care transitions that patients and their caregivers use when electing hospice care. Participants were recruited from hospice agencies serving 3 counties in New York State. Data were collected through 7 interviews of patients, patient-and-caregiver dyads, and a hospice nurse (n = 10). Data were analyzed using the constant comparative method. Our results generated an emerging grounded theory of the hospice care transition processes rooted in maintaining personhood and autonomy. There were 5 contemporaneous steps: (1) recognizing futility and pursuing comfort; (2) seeking help and input as health declines; (3) shopping for the right services, overcoming obstacles, and self-referring to hospice care; (4) attending to the business of dying while living; and (5) processing and expressing emotions. Although not central to the care transition process, an additional step was identified that occurred after the transition to hospice care: planning for an uncertain future. The hospice care transition process identified in the study reveals important mechanistic targets for the development of interventions that promote patient-centered hospice care transitions in the home setting.