Dying in intensive care: An analysis of the perspectives of families and clinicians on end-of-life care

Background Despite a growing body of research into end-of-life care (EOLC) in intensive care units (ICUs), few studies have concurrently explored the perspectives of families and clinicians. Objective The objective of this study was to identify the characteristics of high-quality EOLC in the ICU from family and clinician perspectives and by examining the care documented in medical records. Methods A convergent mixed-methods study incorporating electronic health record audits (n = 20), structured interview surveys with families (n = 20), clinician surveys (n = 189), and focus groups (n = 10) was undertaken at a 30-bed, level 3 ICU at a metropolitan public adult teaching hospital in Australia. Descriptive statistics were calculated from quantitative data, and inductive thematic analysis was used to analyse qualitative data. Results Overall, families were very satisfied with EOLC and the quality of communication yet, felt that earlier, clearer communication that the patient was dying was required. Families spoke of the attentiveness, or lack thereof, by ICU clinicians and the opportunity to be present for the patient's death. The majority of ICU clinicians felt EOLC could be improved. Nurses highlighted communication challenges when family meetings were delayed. Some nurses expressed a lack of clarity of how to withdraw care, resulting in hesitancy to cease potentially inappropriate care, and to provide EOLC outside ICU practice norms. In many instances, observations, invasive monitoring, and interventions were documented after EOLC commenced. A lack of documented personal cares was also noted. Conclusions This study provides new insights into EOLC from the dual perspectives of families and clinicians. There is a need for institutional guidelines to support ICU clinicians’ EOLC practices and education to improve clinician confidence with communication.