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

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.