End-of-life care decision-making from perspectives of patients, family members and healthcare professionals in 10 countries: a qualitative study within the iLIVE project

Patients and families facing the end of life deal with constant health changes, making their ongoing involvement in care decisions vital yet often overlooked. The iLIVE project conducted a qualitative study across 10 countries, exploring the experiences of patients, family members, and healthcare professionals, enabling a comprehensive exploration of the experiences of end-of-life decision-making. The findings suggest that common emotionally driven motives among patients–to avoid suffering, to have agency and be engaged with others, to give and receive care–significantly drive decision-making. Secondly, patients and families need support in determining what is best for them over time, minimising unnecessary uncertainty through subtle communication that requires skills and time, considering multiple motives, and the likely future, while also acknowledging its inherent uncertainty. This frames decision-making as a process to determine the most optimal course of actions in a specific context to meet these needs as much as possible and cope with the distress arising from growing challenges to do so. However, these needs are often marginalised in settings dictated by systemic and contextual characteristics, heightening distress for everyone involved. The complexity of end-of-life decision-making, particularly when time is limited, poses challenges in finding the right focus, yet it remains imperative.