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.