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Text
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URL Address
<a href="http://doi.org/10.1111/cch.12020" target="_blank" rel="noreferrer">http://doi.org/10.1111/cch.12020</a>
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Title
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Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records
Publisher
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Child: Care, Health And Development
Date
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2014
Subject
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Child; Female; Humans; Male; Advance Directives; Physician-Patient Relations; Pediatrics; Practice Guidelines as Topic; Communication; Resuscitation Orders; Time Factors; quality of life; end of life; adolescent; Preschool; decision making; infant; retrospective studies; DNAR; Parents; documentation; Parents/px [Psychology]; Terminal Care; Patient Care Planning/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; review; Medical Records; Neoplasms; advance planning; child and family wishes; Neoplasms/mo [Mortality]; Patient Care Planning/st [Standards]; Terminal Care/px [Psychology]
Creator
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Beringer AJ; Heckford EJ
Description
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BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared.
2014-03
Identifier
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<a href="http://doi.org/10.1111/cch.12020" target="_blank" rel="noreferrer">10.1111/cch.12020</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Advance Directives
advance planning
Backlog
Beringer AJ
Child
child and family wishes
Child: Care, Health and Development
Communication
Decision Making
DNAR
Documentation
End Of Life
Female
Heckford EJ
Humans
Infant
Journal Article
Male
Medical Records
Neoplasms
Neoplasms/mo [mortality]
Parents
Parents/px [psychology]
Patient Care Planning/og [Organization & Administration]
Patient Care Planning/st [Standards]
Pediatrics
Physician-patient Relations
Practice Guidelines As Topic
Preschool
Quality Of Life
Resuscitation Orders
Retrospective Studies
Review
Terminal Care
Terminal Care/og [organization & Administration]
Terminal Care/px [psychology]
Time Factors