Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study

Abstract

Objectives: The aim of this study was to examine the experience(s) of family with the nursing aspects of End-of-life care in the intensive care unit after a decision to end life-sustaining treatment, and to describe what nursing care was most appreciated and what was lacking.

Method: A phenomenological approach including inductive thematic analysis was used. Twenty-six family members of deceased critically ill-patients were interviewed within two months after the patient's death about their experiences with nursing aspects of end-of-life care in the intensive care unit.

Findings: Most family members experienced nursing contribution to end-of-life care of the patient and themselves, especially supportive care. Families mentioned the following topics: Communication between intensive care nurses, critically ill patients and family; Nursing care for critically ill patients; Nursing care for families of critically ill patients; Pre-conditions. Families appreciated that intensive care nurses were available at any time and willing to answer questions. But care was lacking because families had for example, a sense of responsibility for obtaining information, they had problems to understand their role in the decision-making process, and were not invited by nurses to participate in the care.

Conclusions: Most family appreciated the nursing EOLC they received, specifically the nursing care given to the patient and themselves. Some topics needed more attention, like information and support for the family.

Keywords: End-of-life care; Family; Intensive care; Nursing care; Qualitative research.