Care strategy for death rattle in terminally ill cancer patients and their family members: Recommendations from a cross-sectional nationwide survey of bereaved family members' perceptions

Context Bereaved family members witnessing a patient's death rattle often experience distress. However, the benefits of specific care measures aimed at decreasing death rattle-associated family distress have not yet been evaluated. Objectives To clarify death rattle-related emotional distress levels among family members and their perceptions of the need for death rattle care improvement and explore the factors influencing both these issues. Methods A cross-sectional questionnaire survey of bereaved family members of cancer patients was conducted in 95 palliative care units in June 2007. Results Six hundred sixty-three questionnaires were mailed out, and 390 (61%) responses were analyzed. Among these, 181 (46%) respondents experienced death rattle. Of these, 66% reported high distress levels and 53% perceived a strong need for improved death rattle care. Factors influencing high distress levels were the gender (female) of family members, unawareness about death rattle being a natural phenomenon, and their fear and distressing interpretations of death rattle. Factors influencing perceptions of a strong need for improved care were the gender (male) of family members, severity of death rattle, death rattle-associated discomfort to patients, family members' experiences of inadequate nursing care (e.g., repositioning) and insufficient consultation about suctioning, and their perception of uncomfortable smells. Conclusion To decrease family-perceived distress, medical staff should alleviate patient symptoms and suffering with a comprehensive care strategy, try to decrease uncomfortable smells, and communicate with family members to address distressing interpretations and fears.