Evidence Summary
The concepts of existential distress and existential loneliness need clarity and agreed definition. [1,2] Dying brings decline in health, withdrawal from social networks, loss of normal roles, and the utter aloneness with the confrontation of the end of one’s existence. Existential distress at the end of life has been defined as hopelessness, burden to others, loss of sense of dignity, desire for death or loss of will to live [3] and threats to self-identity. [4,5] Existential Loneliness has entered the literature and 'is understood as an intolerable emptiness, sadness, and longing, that results from the awareness of one’s fundamental separateness as a human being.' [6]
Empirical studies have named a number of experiences that can be described as patient existential plight or distress. [7-11] There is significant relationship between cancer patient’s distress and the distress of his or her carer - they experience similar levels of distress. [12,13] There is some evidence, also that existential distress can adversely affect health care professionals. [14]
Screening of distress is still under development and recommendation of which tool to use depends on context of use. [15,16] A number of interventions focused on reducing existential distress have been reviewed, although the quality of evidence is poor and study sizes are limited. [5] Most interventions showed short-term benefit but there was limited follow up beyond 6 months. [5] There is some controversy about the use of sedation to manage distress that is not physical in nature. [2] Research is limited and there is a need to adequately define the concept of existential distress, but there is agreement among clinicians that sedating patients for this condition is not appropriate. [17]