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

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.

The use of family conferences in the pediatric intensive care unit.

BACKGROUND: Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision making. OBJECTIVE: The study's objective was to describe the use and content of PICU FCs. DESIGN: The study design was a prospective chart review comparing patients who had conferences with those who did not, and a sub-analysis of patients with chronic care conditions (CCCs). SETTING/SUBJECTS: The study setting was an academic PICU from January 2011 through June 2011. MEASUREMENTS: Medical events under consideration were placement of tracheostomy or gastrostomy tube; initiation of chronic ventilation; palliative care involvement; use of extracorporeal membrane oxygenation, continuous renal replacement, or cardiopulmonary resuscitation; care limitation orders; death; length of stay; and discharge to a new environment. RESULTS: From 661 admissions, we identified 74 conferences involving 49 patients. Sixty-four conferences (86%) were held about 40 patients with CCCs. Having a conference was associated with (p<0.05): length of PICU admission; palliative care involvement; initiation of chronic ventilation; extracorporeal membrane oxygenation; cardiopulmonary resuscitation; death; discharge to a new environment; and care limitation orders. Twenty-nine percent of patients who had a new tracheostomy or gastrostomy tube placed had a conference. We identified two categories of discussion topics: information exchange and future management. CONCLUSIONS: 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.

End-of-life care decisions in the PICU: roles professionals play.

OBJECTIVE: Describe the roles and respective responsibilities of PICU healthcare professionals 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 pediatric ICU and 48 PICU healthcare professionals (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 healthcare professionals. Participants described medical and nonmedical decisions addressed toward the end of a child's life. From the descriptions, we identified seven roles healthcare professionals 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 healthcare professionals. 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 healthcare professionals in the PICU, among healthcare professionals from different subspecialty teams, and between healthcare professionals 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 healthcare professionals' roles in parental end-of-life care decision making in the pediatric ICU 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.