How doctors actually (do not) involve families in decisions to continue or discontinue life-sustaining treatment in neonatal, pediatric, and adult intensive care: A qualitative study

BACKGROUND: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. AIM: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care. DESIGN: Exploratory inductive thematic analysis of 101 audio-recorded conversations. SETTING/PARTICIPANTS: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated. RESULTS: We identified eight relevant and distinct communicative behaviors. Doctors’ sequential communicative behaviors either reflected consistent approaches—a shared approach or a physician-driven approach—or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families’ decision-making preferences. CONCLUSIONS: Even though tailoring doctors’ communication to families’ preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors’ awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors’ skills in tactfully exploring families’ decision-making preferences and in mutually sharing knowledge, values, and treatment preferences.