Agreement among family members in their assessment of the quality of dying and death

Improving end-of-life care requires accurate indicators of the quality of dying. The purpose of this study was to measure the agreement among family members who rate a loved one's dying experience. We administered the Quality of Dying and Death instrument to 94 family members of 38 patients who died in the intensive care unit. We measured a quality of dying score of 60 out of 100 points and found moderate agreement among family members as measured by an intraclass correlation coefficient (ICC) of 0.44. Variability on individual items ranged from an ICC of 0.15 to 1.0. Families demonstrated more agreement on frequencies of events (ICC 0.54) than on determinations of quality (ICC 0.32). These findings reveal important variability among family raters and suggest that until the variability is understood, multiple raters may generate more comprehensive end-of-life data and may more accurately reflect the quality of dying and death.