What Influences Parents' Decisions To Limit or Withdraw Life Support?

Abstract

Purpose: Decisions to limit/withdraw life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on end-of-life (EOL) decision-making in the PICU has been limited by retrospective methods and the use of closed-ended questions with predetermined response choices. Deeper understanding of parents' views will allow physicians to focus EOL discussions on factors important to parents and help to resolve conflicts. We prospectively identified and described parents' self-reported influences on EOL decision-making for critically ill children. Methods: Parents of children whose PICU physician had made a recommendation to limit/withdraw life support from their child were eligible for the study. Parents participated in semi-structured audio taped interviews regarding their decision-making process. Interviews were conducted during the child's PICU stay. Interviews were transcribed verbatim and independently coded by two investigators to identify segments of text that describe factors influencing parents' EOL decisions. Results: Fourteen parents (9 mothers, 5 fathers) of 10 children were interviewed during the decision-making process. Factors influencing parents' decisions to limit/withdraw support included their personal observation of their child's suffering and decline; previous experience with death/EOL decisions; perceptions of their child's will-to-survive regardless of the child's cognitive and developmental state; their child's previous response to critical care interventions; their need to protect and advocate for their child; and the family's financial resources and concerns regarding life-long care. Parents expressed an overwhelming desire to do what is best for their child but struggled with feelings of selfishness, guilt and the need to avoid agony and sorrow. Physician recommendations, review of options and joint formulation of a plan helped parents gain a sense of control over their situation. Parents of eight children agreed to limit/withdraw life support and parents of two did not. Conclusions: Prospective interviews with open-ended questions identified factors influencing parents' EOL decisions such as their past experience with death and their anticipated emotional adjustments and future resources not previously described in the critical care literature. Inclusion of these factors into discussions with parents may facilitate the decision-making process. More prospective research is needed to further understand what is meaningful to parents during EOL decision-making for children.