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Key words: hospice, meaning, ethnography
ABSTRACT
This article presents the findings from a study intended to help occupational therapists better understand the meaning of occupation surrounding dying and death at a small residential hospice in the midwestern United States. Residents, their families, and hospice staff participated in a 6-month ethnographic study involving participant observation, interviews with staff, a group interview, artifact and document review, and journal keeping by the first author. Four domains of occupation were identified as elements of the dying experience: continuing life, preparation for death, waiting, and death and after-death. In the context of dying, both mundane and unique occupations took on new forms of significance to the residents, families, and caregivers. These findings contribute to our understanding of the nature and meaning of occupation and how occupation creates the good death.
A core philosophy of occupational science and occupational therapy is that meaningful occupation helps support and restore wellbeing. Occupation is viewed as the organizing force behind human activity (Yerxa et al., 1990). We engage in occupation throughout our lifespans, including when dying (Wilcock, 1991, 1993; Zemlce & Clark, 1996). This study explored the nature of occupation in the context of dying at a small residential hospice. Metropolitan Hospice (pseudonym), located in a mid-sized midwestern city, was the field site for a 6month ethnographic study of occupation and end-oflife care. Residents, families, and hospice staff participated in the study through their everyday activity at the hospice. The field methods included participant observation, interviews with staff, a group interview, examination of documents and artifacts, and personal journal and record keeping. This article describes many ordinary and extraordinary occupations that took place in this hospice context and contributes to our understanding of the meaning of occupation to the dying individual, his or her family and friends, and hospice staff,
Until the middle of the 20th century, most people who were ill and dying were cared for at home by family and community members (Aries, 1974). People died at home. The 20th century saw the transition of dying care from families at home to professional caregivers at hospitals (Cowley, Young, & Raffin, 1992). Healthcare professionals reconstructed illness into technical problems to be solved by professional caregivers (Kleinman, 1988), and dying and death became...