Parental perceptions of end‐of‐life care on paediatric intensive care units: a literature review

Abstract

The aim of this study was to review the literature relating to parental perceptions on what constitutes quality end-of-life care (ELC) at the time of their child's death in paediatric intensive care units (PICUs). There are few issues in medicine as complex as those involving ELC provision and within paediatric intensive care, these decisions are particularly emotive. Improving the quality of ELC has become a national priority and an understanding of the reality of parents during and after the loss of a child is a mandatory step in achieving this. Efforts to improve ELC in PICU must be based on an understanding of the issues and problems that are unique to parents within this environment and cannot simply be extrapolated from other settings. It is imperative that this has a high priority in training, clinical practice and research for all members of the intensive care team. Databases were systematically searched to identify primary research that related specifically to parental needs during the death of their child on PICU and published between 2000 to the present. Although the retrospective nature of the studies reviewed presents some limitations, it does provide a broad overview of the characteristics of parental needs, indicating the scope for further empirical research. The identification and acknowledgement of the fundamental needs of parents at this time can enable health professionals to provide competent and compassionate ELC which is as focussed and evidence based as other aspects of paediatric critical care medicine.