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

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

Pages

296-302

Issue

3

Volume

8

Citation

Hauer JM; Wolfe J, “Supportive and palliative care of children with metabolic and neurological diseases,” Pediatric Palliative Care Library, accessed September 26, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14969.

Social Bookmarking