Heckford, E. and Beringer, A.
Child and family wishes: A case notes review of end of life care planning for children with life-limiting conditions.
Archives of Disease in Childhood, 96 (1 (Sup).
Available from: http://eprints.uwe.ac.uk/14659
- Published Version
Publisher's URL: http://dx.doi.org/10.1136/adc.2011.212563.187
Aim To assess compliance with ACT standards (ACT 2004)
in respect of end of life (EOL) planning for children who died from life-limiting conditions between October 2008 and
March 2010 (defi ned geographical area). Methods Retrospective case note review. A standardised data
collection tool was used and eligible children were identified from Child Death Overview Panel data.
Results 42 sets of National Health Service notes were
reviewed, relating to 20 children. The notes of 75% children
contained EOL ‘care plans’. In most cases, these child and
family choices were found buried among the narrative of the
case notes. Discussions about what to do in the case of acute life-threatening event were common (75%). Discussions about wishes during life (25%) and wishes after death (25%) were rare. In 50% cases location of death was either not discussed or no location other than hospital was considered. There were several areas of good practice. Timely and comprehensive discussions were particularly likely where staff had training or expertise in palliative care. Factors causing EOL discussions to be avoided or delayed were diagnostic or prognostic uncertainty,
outstanding investigations or any element of ongoing
Conclusions The ACT standards in relation to EOL planning
are being met to varying degrees and specifi c areas for
development are identifi ed. A locally developed tool exists
for facilitating the discussion and documentation of child
and families’ choices with regard to EOL. Clearly defi ned
indications about when to consider using this tool and how
to ensure that the information it gathers is effectively disseminated, will be crucial to its successful implementation
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