A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program

Title

A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program

Creator

Ho C; Straatman L

Publisher

Journal Of Child Neurology

Date

2012

Subject

Pediatrics; Adolescent; Child; Child Preschool; Female; Humans; Infant; Male; Neuromuscular Diseases/ Mortality/ Nursing; Palliative Care/ Methods/ Utilization; Retrospective Studies; Terminal Care

Description

Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved.

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).

Notes

1708-8283
Ho, Charles
Straatman, Lynn
Journal Article
United States
J Child Neurol. 2013 Jan;28(1):40-4. doi: 10.1177/0883073812439345. Epub 2012 Mar 23.

Citation

Ho C; Straatman L, “A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program,” Pediatric Palliative Care Library, accessed November 20, 2018, https://pedpalascnetlibrary.omeka.net/items/show/11099.

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