Pediatric intensive care unit family conferences: one mode of communication for discussing end-of-life care decisions

Abstract

Objective: To examine clinicians' and parents' reflections on pediatric intensive care unit family conferences in the context of discussion about end-of-life care decision making.

Design: Retrospective qualitative study.

Setting: A university-based hospital.

Participants: Eighteen parents of children who died in the pediatric intensive care unit and 48 pediatric intensive care unit clinicians (physicians, nurses, social workers, child-life specialists, chaplains, and case managers).

Interventions: In-depth, semistructured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making.

Measurements and main results: We identified comments about family conferences in all clinician focus groups/interviews, except one individual nurse interview, and in 13 of the 18 parent interviews. Comments from parents were sparse compared with those from clinicians. Four topics emerged: purpose, structural aspects, challenges, and suggestions for improvement. We identified three purposes for family conferences: communication between clinicians and parents; communication among clinicians; and support of families. Described structural aspects of family conferences included: preconference planning, communication during conferences, and postconference processing. Challenges noted involved communicating with parents during family conferences, such as: difficulties associated with having multiple services involved; balancing messages of hope and realism; using understandable language; and communicating with non-English-speakers. Participants described additional challenges related to the logistics of organizing family conferences. Suggestions focused on methods to improve communication in, organization of, and preparation for family conferences.

Conclusions: Pediatric intensive care unit clinicians in this study perceive family conferences as having an important role in end-of-life care decision making. The paucity of data from parents, an important finding itself, limits our ability to comment on parents' perceptions of family conferences. Prospective research of pediatric intensive care unit family conferences, with specific attention to parents' experiences and to all aspects of family conferences, including pre- and postconference events, should seek to understand the role and impact of this mode of communication on end-of-life care decision making and to determine the need for improvement to family conferences.