Family Outcomes and Perceptions of End-of-Life Care in the Intensive Care Unit: A Mixed-Methods Review

Abstract

The purpose of this review was to evaluate end-of-life care (EOLC) in the intensive care unit (ICU) from the perspective of family members. Sandelowski's segregated approach from Joanna Briggs Institute (JBI) Mixed-Methods Systematic Reviews guided this review. A search was conducted in PubMed, CINAHL, PsycINFO, EMBASE, and ProQuest databases and identified 50 papers (33 quantitative, 15 qualitative, and 2 mixed-methodology studies). Five synthesized themes (distressing emotions, shared decision-making, proactive communication, personalized end-of- life care, and valuing of nursing care) were identified. For quantitative results, study methodologies and interventions were heterogeneous and did not always improve family members' perceived quality of care and family members' psychological distress. Configuration of qualitative and quantitative data revealed ICU end-of-life interventions were ineffective because they were not guided by family members' reported needs and perceptions. To fulfill the family members' needs for the patients' EOLC in the ICU, researchers should develop a theory to explicitly explain how the family members experience ICU EOLC and implement a theory-based intervention to improve family psychological outcomes.

Keywords: critical care; end-of-life care; family; intensive care unit; palliative care; relatives.