Advance care planning and outcome in pediatric palliative home care.

Jessica I Hoell,Arndt Borkhardt,Gisela Janßen,Michaela Kuhlen,Hannah L Weber,Gabriele Gagnon,Laura Trocan,Stefan Balzer,Mareike Danneberg

doi:10.18632/oncotarget.24929

Jessica I Hoell, Arndt Borkhardt + Show 7 more

Open Access

https://doi.org/10.18632/oncotarget.24929

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Journal: Oncotarget	Publication Date: Apr 3, 2018
Citations: 15	License type: cc-by

Affiliation: Heinrich Heine University Düsseldorf

Abstract

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.

Highlights

The main goal of pediatric palliative home care (PPHC) in children and their families with life-limiting conditions (LLCs) is the best possible quality of life [1]
Patients in Together for Short Lives” (TfSL) groups 1/3/4, who died during the course of PPHC, had a younger age at the start of PPHC compared to all patients of the respective groups at the start of PPHC
Whereas most CAYA with a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) died at home, all Full Code patients died in hospital

Summary

Introduction

The main goal of pediatric palliative home care (PPHC) in children and their families with life-limiting conditions (LLCs) is the best possible quality of life [1]. ACP is deemed as a process including the opportunity to make and sometimes modify decisions in a timely fashion in a multi-disciplinary team including patients, whenever possible, their families as well as health care professionals [2,3,4]. The patients/parents specify, whether they wish for the whole range of resuscitation and medical interventions should a life-threatening situation occur (Full Code) or whether they wish for comfort care only (Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR)). They might wish for some invasive lifewww.oncotarget.com sustaining interventions (such as suctioning, mask ventilation, intubation) but not for others (treatment limitations)

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