Objective: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the use of closed-ended questionnaires. We prospectively identified and described parents' self-reported influences on decisions to forgo life support from their children. Deeper understanding of parents' views will allow physicians to focus end-of-life discussions on factors important to parents and help resolve conflicts.
Design: Prospective, qualitative pilot study.
Setting: Pediatric intensive care unit of a university-affiliated children's hospital.
Participants: A total of 14 parents of ten children whose pediatric intensive care unit physician had made a recommendation to limit or withdraw life support.
Interventions: : In-depth, semistructured interviews were conducted with parents during their decision-making process.
Measurements and main results: Factors influencing the parents in this study in their decision to forgo life support included their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care. Parents in this study expressed the 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 forgo life support and parents of two did not.
Conclusions: Prospective interviews with open-ended questions identified factors influencing parents' decision making not previously described in the critical care literature such as parents' past experiences with end-of-life decisions and their anticipated emotional adjustments and future resources. Inclusion of these factors into discussions is important to parents and may facilitate decisions regarding the limitation or withdrawal of life support.