Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study

Abstract

This study explored the meanings and experiences of patients with terminal chronic diseases and their caregivers, who face the imminence of death in the home environment after hospital discharge. The qualitative study used constructivist grounded theory. The participants were individuals with a terminal chronic illness, discharged to home, and their family caregivers. Data were gathered from in-depth interviews and field notes, and a comparative analysis was conducted to identify categories and codes, according to Charmaz’s theory. The sample consisted of 21 participants. Three inter-related data categories emerged: “Floating between acceptance and resistance: Perceiving the proximity of death”, “Analysing the end from other perspectives: it is in the encounter with death that life is understood” and “Accepting the path: between the love of letting go and the love of wanting to stay”. The categories translate the reconstruction of those facing end-of-life occurring in the home environment. It is amid the imminence of death that life gains intensity and talking about the finitude of life configures an opportunity to see life from other perspectives. Giving voice to individuals facing the mishaps of a terminal illness fosters the path to a comfortable death. For health professionals, it is an opportunity to provide structured and humanized care with an ethical attitude, in defence of human dignity.