How matters End-of-life communication with family members of critically ill neonates, children, and adults

End-of-life decisions, more specifically decisions about whether to continue or discontinue the patient’s life-sustaining treatment, are among the most difficult decisions to make. Decision-making is emotionally overwhelming and complex for all involved in the communication- and decision-making process, especially when it concerns life and death decisions for another human being. These situations confront healthcare providers and family members of critically ill patients with the limitations of medical possibilities and human knowledge. In these situations, there is no way out but rather only a way through. As such, how matters.
How physicians and family members of critically ill patients together make end-of-life decisions, how they communicate about these decisions, and how physicians learn to conduct such complex end-of-life conversations, can significantly impact the experiences and outcomes for patients, family members, and healthcare providers.
In this thesis, we therefore obtained in-depth insights into end-of-life communication- and decision-making practices in intensive care units. We aimed to increase knowledge and awareness of how physicians actually communicate with the family members of critically ill neonates, children, and adults during real-life end-of-life conversations. Additionally, we explored how physicians perceive their own communication and how they (wish to) learn to communicate with family members of critically ill patients in end-of-life conversations. Based on our overall conclusions, we propose three ‘shifts’ in communication. We also propose corresponding learning methods, to not only move toward effective end-of-life communication with families but also to move toward a valuing communication culture in intensive care medicine.