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Caring until the end: a systematic literature review exploring Paediatric Intensive Care Unit end-of-life care
1Nursing Studies (Child Branch), MSc Advancing Professional Practice (Paediatrics), Senior Staff Nurse, CICU, Great Ormond Street Hospital for Children, NHS Foundation Trust, London WC1N 3JH, UK.
Insights
Providing end-of-life care (EOLC) in paediatric intensive care units (PICUs) involves complex decisions. This review supports transferring children home or to hospice for EOLC, highlighting challenges and areas for further research.
Area of Science:
- Pediatric critical care medicine
- Palliative care
- Bioethics
Background:
- Child death is a traumatic event with lasting effects on parental grieving.
- Most pediatric deaths occur in PICUs, often after treatment withdrawal.
- Withdrawal of intensive care is increasingly common in UK PICUs.
Purpose of the Study:
- To systematically review literature on end-of-life care (EOLC) in Pediatric Intensive Care Units (PICUs).
- To explore options for children and families during end-of-life care in contemporary practice.
Main Methods:
- Systematic literature review of papers published between 2002 and 2013.
- Utilized Cormack's (2000) framework for critical literature review.
- Qualitative approach for analysis and synthesis of included articles.
Main Results:
- Eight papers met inclusion criteria, indicating a limited but complex subject area.
- Key themes identified: family and staff views, decision-making, medico-legal aspects, and resource allocation.
- Challenges for children, parents, and staff were highlighted.
Conclusions:
- Generally supports facilitating transfer of children to home or hospice for intensive care withdrawal and EOLC.
- Further research is needed on long-term implications, legal issues, and clinical protocol effectiveness.
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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