PMID- 32091504 OWN - NLM STAT- MEDLINE DCOM- 20210106 LR - 20210106 IS - 1529-7535 (Print) IS - 1529-7535 (Linking) VI - 21 IP - 5 DP - 2020 May TI - Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project. PG - e236-e246 LID - 10.1097/PCC.0000000000002259 [doi] AB - 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. FAU - Ramelet, Anne-Sylvie AU - Ramelet AS AD - Institute of Higher Education and Research in Healthcare, Faculty of Biology and Medicine, University of Lausanne, Lausanne, Switzerland. AD - Department Woman-Mother-Child, Lausanne University Hospital (CHUV), Lausanne, Switzerland. FAU - Bergstraesser, Eva AU - Bergstraesser E AD - Paediatric Oncology Department, University Children's Hospital, Zurich, Switzerland. FAU - Grandjean, Chantal AU - Grandjean C AD - Institute of Higher Education and Research in Healthcare, Faculty of Biology and Medicine, University of Lausanne, Lausanne, Switzerland. AD - Department Woman-Mother-Child, Lausanne University Hospital (CHUV), Lausanne, Switzerland. FAU - Dorsaz, Anouk AU - Dorsaz A AD - Paediatric Department, Hopital Riviera-Chablais (Vaud-Valais), Vevey, Switzerland. FAU - Fahrni-Nater, Patricia AU - Fahrni-Nater P AD - Department Woman-Mother-Child, Lausanne University Hospital (CHUV), Lausanne, Switzerland. FAU - Cignacco, Eva AU - Cignacco E AD - Department Public Health (DPH), Nursing Science, University of Basel, Basel, Switzerland. AD - Department of Health Professions, Bern University of Applied Sciences, Bern, Switzerland. FAU - Zimmerman, Karin AU - Zimmerman K AD - Department Public Health (DPH), Nursing Science, University of Basel, Basel, Switzerland. AD - Children's Research Center, University Children's Hospital of Zurich, University of Zurich, Zurich, Switzerland. CN - Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Consortium LA - eng PT - Journal Article PT - Research Support, Non-U.S. Gov't PL - United States TA - Pediatr Crit Care Med JT - Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies JID - 100954653 SB - IM CIN - Pediatr Crit Care Med. 2020 May;21(5):505-506. PMID: 32358336 MH - Child MH - Humans MH - Infant MH - Infant, Newborn MH - Intensive Care Units MH - Intensive Care Units, Neonatal MH - Resuscitation Orders MH - Retrospective Studies MH - Switzerland MH - *Terminal Care FIR - Ansari, Marc IR - Ansari M FIR - Aebi, Christoph IR - Aebi C FIR - Baer, Reta IR - Baer R FIR - Beck Popovic, Maja IR - Beck Popovic M FIR - Bernet, Vera IR - Bernet V FIR - Brazzola, Pierluigi IR - Brazzola P FIR - Bucher, Hans Ulrich IR - Bucher HU FIR - Buder, Regula IR - Buder R FIR - Cagnazzo, Sandra IR - Cagnazzo S FIR - Dinten, Barbara IR - Dinten B FIR - Elmer, Franz IR - Elmer F FIR - Enriquez, Raquel IR - Enriquez R FIR - Finkbeiner, Gabi IR - Finkbeiner G FIR - Frey, Bernhard IR - Frey B FIR - Frey, Urs IR - Frey U FIR - Greiner, Jeannette IR - Greiner J FIR - Hassink, Ralph-Ingo IR - Hassink RI FIR - Keller, Simone IR - Keller S FIR - Kretschmar, Oliver IR - Kretschmar O FIR - Kroll, Judith IR - Kroll J FIR - Laubscher, Bernard IR - Laubscher B FIR - Leibundgut, Kurt IR - Leibundgut K FIR - Malar, Reta IR - Malar R FIR - Meyer, Andreas IR - Meyer A FIR - Stuessi, Christoph IR - Stuessi C FIR - Nelle, Mathias IR - Nelle M FIR - Neuhaus, Thomas IR - Neuhaus T FIR - Niggli, Felix IR - Niggli F FIR - Perrenoud, Genevieve IR - Perrenoud G FIR - Pfammatter, Jean-Pierre IR - Pfammatter JP FIR - Plecko, Barbara IR - Plecko B FIR - Rupf, Debora IR - Rupf D FIR - Sennhauser, Felix IR - Sennhauser F FIR - Stade, Caroline IR - Stade C FIR - Steinlin, Maja IR - Steinlin M FIR - Stoffel, Lilian IR - Stoffel L FIR - Thomas, Karin IR - Thomas K FIR - Vonarburg, Christian IR - Vonarburg C FIR - von Vigier, Rodo IR - von Vigier R FIR - Wagner, Bendicht IR - Wagner B FIR - Wieland, Judith IR - Wieland J FIR - Wernz, Birgit IR - Wernz B EDAT- 2020/02/25 06:00 MHDA- 2021/01/07 06:00 CRDT- 2020/02/25 06:00 PHST- 2020/02/25 06:00 [pubmed] PHST- 2021/01/07 06:00 [medline] PHST- 2020/02/25 06:00 [entrez] AID - 10.1097/PCC.0000000000002259 [doi] PST - ppublish SO - Pediatr Crit Care Med. 2020 May;21(5):e236-e246. doi: 10.1097/PCC.0000000000002259.