Supportive and palliative care of children with metabolic and neurological diseases
Title
Supportive and palliative care of children with metabolic and neurological diseases
Creator
Hauer JM; Wolfe J
Identifier
Publisher
Current Opinion In Supportive And Palliative Care
Date
2014
Subject
Humans; Palliative Care; Terminal Care; Pediatrics; Parents; Communication; Nervous System Diseases; Risk Assessment; Hope; Stress; quality of life; Psychological; advance care planning; neurologic; Metabolic Diseases; Metabolic Diseases
Description
PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and neurological diseases. Evidence indicates the benefit of PPC. Utilization of PPC programmes can facilitate communication, ensure that families are better informed, improve certainty with decisions, enhance positive emotions, result in fewer invasive interventions at the end of life, and have an impact on location of death. Barriers to utilization of PPC include concern about taking away hope and uncertainty about prognosis. Challenging areas for children with metabolic and neurological diseases include the identification of distressing symptoms and prognostic uncertainty. This article aims to review literature relevant to this group of children, as well as provide a framework when considering specific palliative care needs. SUMMARY: PPC for children with metabolic and neurological diseases can lessen a child's physical discomfort and enhance parental certainty with decision-making. These areas along with other needs throughout the illness trajectory and bereavement are being increasingly met by the growing availability of PPC programmes.
2014-09
Rights
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
Journal Article
Citation List Month
Backlog
URL Address
Citation
Hauer JM; Wolfe J, “Supportive and palliative care of children with metabolic and neurological diseases,” Pediatric Palliative Care Library, accessed September 14, 2024, https://pedpalascnetlibrary.omeka.net/items/show/14969.