A qualitative meta-synthesis investigating the experiences of the patient’s family when treatment is withdrawn in the intensive care unit

Abstract

Aim: To synthesize qualitative studies of patients’ families’ experiences and perceptions of end-of-life care in the intensive care unit when life-sustaining treatments are withdrawn. Design: Qualitative meta-synthesis. Data sources: Comprehensive search of 18 electronic databases for qualitative studies published between January 2005 - February 2019. Review Method: Meta-aggregation. Results: Thirteen studies met the inclusion criteria. A conceptual ‘Model of Preparedness’ was developed reflecting the elements of end-of-life care most valued by families: ‘End-of-life communication’; ‘Valued attributes of patient care’; ‘Preparing the family’; ‘Supporting the family’; and ‘Bereavement care’. Conclusion: A family-centred approach to end-of-life care that acknowledges the values and preferences of families in the intensive care unit is important. Families have unmet needs related to communication, support, and bereavement care. Effective communication and support are central to preparedness and if these care components are in place, families can be better equipped to manage the death, their sadness, loss, and grief. The findings suggest that health professionals may benefit from specialist end-of-life care education to support families and guide the establishment of preparedness. Impact: Understanding the role and characteristics of preparedness during end-of-life care will inform future practice in the intensive care unit and may improve family member satisfaction with care and recovery from loss. Nurses are optimally positioned to address the perceived shortfalls in end-of-life care. These findings have implications for health education, policies, and standards for end-of-life care in the intensive care unit.