Objective Describe the roles and respective responsibilities of pediatric intensive care unit (PICU) health care professionals (HCPs) in end-of-life care decisions faced by PICU parents. Design Retrospective qualitative study Setting University based tertiary care children’s hospital Participants Eighteen parents of children who died in the PICU and 48 PICU HCPs (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). Interventions In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. Measurements and Main Results We identified end-of-life care decisions that parents face based on descriptions by parents and HCPs. Participants described medical and non-medical decisions addressed toward the end of a child’s life. From the descriptions, we identified seven roles HCPs play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to HCPs. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents’ understanding. The general care coordinator helps facilitate interactions among HCPs in the PICU, among HCPs from different subspecialty teams, and between HCPs and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during and after dying/death. The point person develops a unique trusting relationship with parents. Conclusions Our results describe a framework for HCPs’ roles in parental end-of-life care decision making in the PICU that includes directive, value-neutral and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these roles during the decision-making process could improve parents’ experiences at the end of a child’s life.

Most identified FCs involved complex patients or patients who faced decisions affecting the child's quality of life or dying. For many patients who faced life changing decisions we did not identify a FC. Further research is needed to understand how to best utilize FCs and less formal conversations.

In the FCs studied, we found that DM is a nonlinear process. We also found that several SDM elements that could provide information about parents' perspectives and needs did not always occur, identifying areas for process improvement.

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