Caring until the end: a systematic literature review exploring Paediatric Intensive Care Unit end-of-life care

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Abstract

Aims and objectives:

A systematic review of the literature focusing on the provision of end-of-life care (EOLC) on Paediatric Intensive Care Units (PICUs) and the options available to children and families within contemporary clinical practice.

Background:

The death of a child is recognized as a uniquely traumatic experience for a parent. The care delivered to a child and family surrounding death can have a lasting effect on the grieving process. The majority of paediatric deaths occur within PICUs, often as a result of withdrawing or withholding treatment. Withdrawal of intensive care is becoming more common within UK PICUs, and this review will focus on the options available when a child's on-going treatment is deemed to be futile.

Search strategies:

Literature published from 2002 to 2013 was obtained from a range of sources and critically reviewed. Cormack's (2000) framework for systematic literature review was utilized to critically review literature before analysis and synthesis of the literature was undertaken within the qualitative approach.

Inclusion/exclusion criteria:

Each article focused on issues surrounding the topic area, excluded adult and neonatal intensive care and was published in English.

Conclusions:

Eight papers met the inclusion criteria and were suitable for review (highlighting difficulties in reviewing a small, complex subject area). Key themes identified included family views, staff views, decision-making, medico-legal issues and resources.

Relevance to clinical practice:

Although the number of relevant articles is limited, a wide range of challenges facing children, parents and staff are highlighted, whilst generally supporting the facilitation of transferring children to their homes or hospice for withdrawal of intensive care and continuing EOLC. Further research is required, particularly regarding long-term implications, legal issues and the effectiveness of clinical protocols.

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