Advance care planning and outcome in pediatric palliative home care

Title

Advance care planning and outcome in pediatric palliative home care

Creator

Hoell JI; Weber HL; Balzer S; Danneberg M; Gagnon G; Trocan L; Borkhardt A; Janssen G; Kuhlen M

Publisher

Oncotarget

Date

2018

Subject

advance care planning; home care; life sustaining treatment; medical order; palliative therapy; article; child; controlled study; death; female; hospice; human; major clinical study; male; resuscitation; retrospective study

Description

Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.

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).

Citation List Month

June 2018 List

Collection

Citation

Hoell JI; Weber HL; Balzer S; Danneberg M; Gagnon G; Trocan L; Borkhardt A; Janssen G; Kuhlen M, “Advance care planning and outcome in pediatric palliative home care,” Pediatric Palliative Care Library, accessed September 18, 2018, https://pedpalascnetlibrary.omeka.net/items/show/15158.

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