Family decision making at end of life

OBJECTIVE: To enhance understanding of the phenomenon of family surrogate decision-making at the end of life (EOL) by means of a systematic review and synthesis of published research reports that address this phenomenon. METHODS: Garrard's (1999) methods for conducting a systematic review of the literature were followed. Fifty-one studies focusing on family decision-making experiences, needs, and processes when assisting a dying family member were selected following electronic database searches and ancestry searches. RESULTS: In studies using hypothetical scenarios to compare patients' choices and surrogates' predictions of those choices, surrogates demonstrated low to moderate predictive accuracy. Increased accuracy occurred in more extreme scenarios, under conditions of forced choice, and when the surrogate was specifically directed to use substituted judgment. In qualitative explorations of their perspectives, family members voiced their desire to be involved and to accept the moral responsibility attendant to being a surrogate. Quality of communication available with providers significantly influenced family satisfaction with decision-making and EOL care. Group or consensual decision-making involving multiple family members was preferred over individual surrogate decision-making. Surrogates experienced long-term physical and psychological outcomes from being decision-makers. SIGNIFICANCE OF RESULTS: Functioning as a surrogate decision-maker typically places great moral, emotional, and cognitive demands on the family surrogate. Clinicians can provide improved care to both patients and families with better understanding of surrogates' needs and experiences.