Communicating with families of critically ill patients about continuing or discontinuing life-sustaining treatment

Medical decision-making in intensive care units involves many aspects and is always a challenging process. This dissertation aims to provide in depth insight into communication and decision-making practices in actual conversations in the neonatal, pediatric, and adult intensive care unit. It describes the extensive qualitative exploration of the following complex communicative challenges: (1) how to involve families in decisions, (2) how to exchange arguments pro and con decisions, (3) how to deal with conflicts that arise between the medical team and families during the decision-making process, (4) how to provide understandable information to families, and (5) how to discuss uncertainty with families. Findings showed that much is going well. Nevertheless, progress can be made on several aspects. The first step for this progress is awareness. Now it is up to the neonatologists, pediatric intensivists, and adult intensivists (in training) to further improve their communication skills in collaboration with nurses. They have to do so in a rapidly changing context involving technological advancements and a diversifying patient population which reshape the doctor-family relationship. Tailored communication is key in establishing satisfying communication and decision-making processes with families. Tailoring is only possible if families reveal more about themselves, their preferences, and their needs than seems to be the case now. They can be stimulated to do so by the doctor, but more awareness on the part of the family may also be necessary. Awareness about that it can happen to anyone that a loved one ends up in an intensive care unit and about the possibilities of peer support and family education.