Skip to main content

Research Repository

Advanced Search

Child and family wishes: A case notes review of end of life care planning for children with life-limiting conditions

Heckford, EJ; Beringer, Antonia

Child and family wishes: A case notes review of end of life care planning for children with life-limiting conditions Thumbnail


Authors

EJ Heckford



Abstract

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
curative management.
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

Journal Article Type Article
Publication Date Apr 1, 2011
Deposit Date May 25, 2011
Publicly Available Date Nov 15, 2016
Journal Archives of Disease in Childhood
Print ISSN 0003-9888
Publisher BMJ Publishing Group
Peer Reviewed Peer Reviewed
Volume 96
Issue 1 (Sup
DOI https://doi.org/10.1136/adc.2011.212563.187
Keywords child, family, case notes review, end of life care planning, children, life-limiting conditions
Public URL https://uwe-repository.worktribe.com/output/963828
Publisher URL http://dx.doi.org/10.1136/adc.2011.212563.187
Contract Date Nov 15, 2016

Files






You might also like



Downloadable Citations