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A Descriptive Study of Decision-Making Conversations during Pediatric Intensive Care Unit Family Conferences

Journal title
Journal of palliative medicine
Publication year
Smith, M. A.; Clayman, M. L.; Frader, J.; Arenson, M.; Haber-Barker, N.; Ryan, C.; Emanuel, L.; Michelson, K.

BACKGROUND: Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs). OBJECTIVE: Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs. DESIGN: Observational study. SETTING/SUBJECTS: University-based tertiary care PICU, including 31 parents and 94 PICU healthcare professionals involved in FCs. MEASUREMENTS: We recorded, transcribed, and analyzed 14 PICU FCs involving decision-making discussions. We used a modified grounded theory and content analysis approach to explore the use of traditionally described stages of decision making (DM) (information exchange, deliberation, and determining a plan). We also identified the presence or absence of predefined SDM elements. RESULTS: DM involved the following modified stages: information exchange; information-oriented deliberation; plan-oriented deliberation; and determining a plan. Conversations progressed through stages in a nonlinear manner. For the main decision discussed, all conferences included a presentation of the clinical issues, treatment alternatives, and uncertainty. A minority of FCs included assessing the family’s understanding (21%), assessing the family’s need for input from others (28%), exploring the family’s desired decision-making role (35%), and eliciting the family’s opinion (42%). CONCLUSIONS: 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.

Research abstracts