Living with dying : from the patient's perspective

Abstract

There are few descriptive studies on the experience of dying from the patient‟s perspective. The existing studies were conducted mostly on Caucasians, in the continental United States, or in other countries. Very little research has been conducted to explore the Pacific Islanders‟ perspectives on dying. Cultural differences may have an effect on the research results. The purpose of this research is to: (a) understand the lived experiences of residents in Hawaiʻi, with serious, progressive illnesses; (b) identify their values and preferences for the remainder of their lives; and (c) describe their ideas and beliefs of "good quality of dying." The population consisted of nine terminally ill adult Asian/Pacific Islanders living in rural Hawai‟i. After informed consent was obtained, data was collected through indepth, face-to-face, open-ended interviews. The recordings of the interviews were transcribed verbatim. The data were examined for themes and concepts utilizing interpretive phenomenology. The participant interviews resulted in rich descriptions of each individual experience framed within the context of the four existential life worlds (temporality, relationality, spaciality, and corporeality). Four distinct themes emerged: Higher Being or spirituality, family or healthcare provider support, symptom management, and mission and attitude. Cultural aspects were also examined. Implications included: (a) Effective patient pain control and symptom management are essential for quality of dying, (b) Open communication and loving support of the patient are essential to the quality of dying, and (c) Cultural characteristics should be used only as guidelines for care.