Awareness of dying: Prevalence, causes and consequences

Analysis of a subset of data from a survey of 3696 relatives, friends and others who knew a sample of people dying in 1990 who lived in 20 areas of the United Kingdom (the Regional Study of Care for the Dying) is reported. Using the typology of awareness contexts developed by Glaser and Strauss [(1965) Awareness of Dying, Aldine, Chicago], the prevalence of different awareness contexts is described and compared with an earlier survey done in 1969. Open awareness of dying, where both the dying person and the respondent knew that the person was dying, is the most prevalent awareness context. This is particularly so in cancer and represents a change since 1969 when closed awareness (where the respondent knows, but the dying person does not) was more common. The characteristics of those dying in open and closed awareness contexts are then compared, suggesting that having cancer, not being mentally confused, having a respondent who knew for some time that the person was dying, and being of higher social class are independently predictive of full open awareness, a condition marked both by knowledge of dying, and a value commitment towards openness. Compared with people in closed awareness, people dying in full awareness are more able to plan their dying careers, so that they and their respondents are more satisfied with the degree of choice over the place of death, they are less likely to die alone, and are more likely to die in their own homes. Additionally, these individuals are more likely to have spoken of their wishes for euthanasia, another indicator of their desire to control the manner and timing of death. If dying from cancer, people in full open awareness are more likely to have received hospice care. It is suggested that underlying these patterns, and in contrast with some other cultures where awareness of dying is seen as less desirable, people dying in Anglophone countries are particularly concerned to maintain control over projects of self-identity. Their approach to death is a reflection of this individualism.death terminal care awareness hospice euthanasia