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Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs


Ramelet, Anne-Sylvie; Bergstraesser, Eva; Grandjean, Chantal; Dorsaz, Anouk; Fahrni-Nater, Patricia; Cignacco, Eva; Zimmermann, Karin (2020). Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs. Pediatric Critical Care Medicine, 21(5):e236-e246.

Abstract

Objectives: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU.

Design: Substudy of a nation-wide retrospective chart review.

Setting: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland.

Patients: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions.

Interventions: None.

Measurements and main results: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008).

Conclusions: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.

Abstract

Objectives: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU.

Design: Substudy of a nation-wide retrospective chart review.

Setting: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland.

Patients: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions.

Interventions: None.

Measurements and main results: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008).

Conclusions: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Scopus Subject Areas:Health Sciences > Pediatrics, Perinatology and Child Health
Health Sciences > Critical Care and Intensive Care Medicine
Uncontrolled Keywords:Pediatrics, Perinatology, and Child Health, Critical Care and Intensive Care Medicine
Language:English
Date:1 May 2020
Deposited On:11 Jan 2021 07:56
Last Modified:12 Jan 2021 21:00
Publisher:Lippincott Williams & Wilkins
ISSN:1529-7535
OA Status:Closed
Publisher DOI:https://doi.org/10.1097/pcc.0000000000002259
PubMed ID:32091504

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