advanced directives, bereavement, end of life, family caregivers, healthcare proxy, Impact of Event Scale-Revised, palliative care, social networks, surrogate decision maker (making)



  1. Webb, Judith DNP, ANP-BC, Palliative Care NP-BC
  2. Guarino, A. J. PhD


Approximately 70% of adults older than 60 years will lose decision-making capacity at the end of their lives, requiring a surrogate to make decisions about increasingly complex life-prolonging interventions. Surrogate decision makers play an important role, yet little is known about the long-term impact on them of making decisions. This study, a causal-comparative study, used social networks to survey adults who have experienced the death of a loved one in multiple hospital and nonhospital settings. Surrogate decision makers were compared with non-decision makers, using the Impact of Event Scale-Revised. In a sample of 339 subjects, 37% had served as surrogate decision makers. Comparison of mean scores on the three subscales: intrusion, avoidance, and hyperarousal, indicated that both decision makers and non-decision makers experienced mild to moderate distress within the previous week. Younger surrogate decision makers reported significantly greater symptoms of intrusion and hyperarousal. Non-decision makers' distress diminished over time, but decision makers continued to experience intrusion, even though for most the death had been more than 5 years prior to the survey. Previous experiences with death of loved ones are important considerations even when losses occurred many years in the past. While all bereaved individuals experience varying degrees of distress, surrogate decision makers have unique vulnerability for long-term psychological morbidity.