Learning Objective #1: Summarize the state of our scientific knowledge in family surrogate decision-making at the end of life, and identify directions for further research

Learning Objective #2: Describe ways in which clinicians can assist family surrogate decision-makers

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This presentation reports on a systematic review and synthesis of published research reports addressing the phenomenon of family surrogate decision-making at the end of life (EOL). Method: The electronic databases, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, Bioethicsline, CancerLit, and Cochrane Database of Systematic Reviews were searched using key words ethical decision-making, family decision-making, and surrogate decision-making in combination with terminal care, palliative care, hospice care, terminally ill patients, and end of life care. Ancestry searches were also conducted. Results: One hundred sixty (160) abstracts were reviewed and 45 primary research reports selected for inclusion in the systematic review. Conclusions: In concordance studies comparing patients' choices and surrogates' predictions of those choices in hypothetical scenarios, 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. Demographic characteristics, presence of advance directives, being the legal vs. the moral surrogate, and the surrogate's level of confidence that he/she knew the family member's wishes were unrelated to surrogate accuracy. 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. Family members wanted as much information as possible and did not report feeling overwhelmed with information. 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: 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.