Perceptions regarding the gap between the good death and the usual death

Principal Investigators: Prof. Jiska Cohen-Mansfield & Dr. Shai Brill

Throughout time and cultures, the concept of a “good death” has existed, though in considerably varying definitions. In a concept analysis based on 42 studies, it was found that among patients, caregivers, and practitioners, the consensus attributes of a “good death” are: control over the dying experience, comfort during dying, a sense of closure, affirmation of the dying person, trust in care providers, recognition of approaching death, honoring of dying person's beliefs and values, minimal burdens on the dying person, optimized relationships, appropriateness of death, leaving a legacy, and family care. Additional elements which are commonly described include pain management, and being spiritually prepared to die.

The concept of “bad death” exists in the literature almost entirely as a contrast to the “good death”, but rarely has it been studied as a concept on its own in Western cultures. In non-Western cultures, “bad death” can merely be the absence of a culturally-defined “good death” or death at the wrong time or place. Common themes of the “bad death” include dying alone/away from “home”, having little control one's “death event”, being in pain or distress/uncontrolled symptoms, or a lack of acceptance by the patient of their impending death. There has even been some work on turning “bad deaths” into “good” ones after the fact, such as posthumous conception.

This study examines people’s perceptions and intents concerning the difference between the good death and the usual death, as well as extends the discussion from the dying process to the end of life stage. Thus, the end of life stage will be examined through surveying the perspectives of family and professional caregivers, as well as their delineation of the viewpoints espoused by the patients/family members they cared for. By doing so, this study aims to expand the conceptualizations used in past research to include end of life as a period in life rather than focusing specifically on the dying process. Finally, it is worth emphasizing that this study is seen as a pilot research for examining the aforementioned issues in multiple populations among the Israeli society.

The study is based on interviews with families and professional caregivers of patients who are either in a long term care hospital or died at a long term care hospital regarding the themes at the locus of the study.