surrogate decision-making, families, life-sustaining treatments, qualitative research



  1. Hayes, Carolyn M. PhD, RN


The role of surrogate decision-maker (SDM) is legally recognized in the United States. As a result, family members, loved ones, and significant others are increasingly participating in decisions to withdraw life-sustaining treatment from terminally ill patients. This phenomenological inquiry was undertaken to learn more about the experience and meaning of the decision to withhold or withdraw life-sustaining treatments from an incapacitated adult following an unanticipated, catastrophic illness. Thirteen participants who had made a decision that resulted in a loved one's death were interviewed 6 to 18 months after the decision-making experience. Interview data were analyzed using Giorgi's 4-step method to identify meaning units, situated level descriptions, and general level descriptions. Two themes emerged that described the surrogate decision-making experience:representation of other and memory manipulation. These are complex, nonlinear processes of memory recall, creation, and reconciliation. Healthcare team members can minimize negative consequences and maximize opportunities for positive reflection by the SDM with a sound understanding of the decision-making process. Recognition of the needs of the SDMs, particularly the need to reflect on substituted judgment as they represent the full lives led of the patients and the need for time to recall, create, and reconcile memories were established in this study as significant to sound decision-making at end of life and healthy grieving for survivors.