Giving a voice to patients at high risk of dying in the intensive care unit: a multiple source approach

Purpose Data are scarce regarding the experience of critically ill patients at high risk of death. Identifying their concerns could allow clinicians to better meet their needs and align their end-of-life trajectory with their preferences and values. We aimed to identify concerns expressed by conscious patients at high risk of dying in the intensive care unit (ICU). Methods Multiple source multicentre study. Concerns expressed by patients were collected from five different sources (literature review, panel of 50 ICU experts, prospective study in 11 ICUs, in-depth interviews with 17 families and 15 patients). All qualitative data collected were analyzed using thematic content analysis. Results The five sources produced 1307 concerns that were divided into 7 domains and 41 sub-domains. After removing redundant items and duplicates, and combining and reformulating similar items, 28 concerns were extracted from the analysis of the data. To increase accuracy, they were merged and consolidated, and resulted in a final list of 15 concerns pertaining to seven domains: concerns about loved-ones; symptom management and care (including team competence, goals of care discussions); spiritual, religious, and existential preoccupations (including regrets, meaning, hope and trust); being oneself (including fear of isolation and of being a burden, absence of hope, and personhood); the need for comforting experiences and pleasure; dying and death (covering emotional and practical concerns); and after death preoccupations. Conclusion This list of 15 concerns may prove valuable for clinicians as a tool for improving communication and support to better meet the needs of patients at high risk of dying.