Objective: Despair at the end of life has been identified by many psychooncologists as being the key element encountered when managing terminally ill patients, although often described in related terms such as existential suffering, spiritual despair, or more recently demoralization. The presence of end of life despair is characterized by hopelessness, helplessness, depression, loss of meaning and purpose, desire-for-death and has been associated with negative outcome, increased distress and suffering, and poor quality of life in palliative care settings. Yet tools to evaluate and measure the phenomena of end-of-life despair are greatly lacking. The proposed model will further characterize the construct of end-of-life despair.
Method: 246 patients in a palliative care hospital with a life expectancy of less than 3 months completed a psychosocial interview which consisted of a series of standardized instruments that included: the Beck Hopelessness scale, the Structured Clinical Interview for DSM-IV- for Major Depressive Disorder, the Memorial Symptom Assessment- Psychological Symptom Distress scale, the Schedule of Attitudes toward Hastened Death, and the FACIT Spiritual Well-Being Scale- Meaning subscale, and single item questions that assessed suicidal ideation, reasons to live and die, and perception of being a burden. A factor analysis was completed using a subset of items from these measures, which were identified as being potentially related to end-of-life despair.
Results: Several significant factors emerged including:, (a sense of loss of meaning, purpose and hope for the future) Passive Desire for Death (a wish to die sooner), Psychological Distress (depression and anxiety), Active Desire for Death (Suicidal Ideation and interest in PAS), and Fear of Suffering (psychological and physical).
Conclusions: End-of-life despair is an important construct that needs to be evaluated, measured and addressed among terminally ill patients.