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Cited by 18Palliative Care and End-of-Life IssuesPalliative and Oncologic CareEthics and Legal Issues in Pediatric Healthcare

The DOI matches its Crossref record; 2 of the 2 references it cites were found in a registry or an index.

Advance care planning and outcome in pediatric palliative home care

Open access
Hoell, Jessica I., Weber, Hannah L., Balzer, Stefan, Danneberg, Mareike, Gagnon, Gabriele, Trocan, Laura, Borkhardt, Arndt, Janßen, Gisela, Kuhlen, Michaela·2018·Oncotarget
DOI 10.18632/oncotarget.24929PMC PMC5915160
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Abstract

// Jessica I. Hoell 1 , Hannah L. Weber 1 , Stefan Balzer 1 , Mareike Danneberg 1 , Gabriele Gagnon 1 , Laura Trocan 1 , Arndt Borkhardt 1 , Gisela Janßen 1 and Michaela Kuhlen 1 1 University of Duesseldorf, Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Duesseldorf, Germany Correspondence to: Michaela Kuhlen, email: Michaela.Kuhlen@med.uni-duesseldorf.de Keywords: terminal care; advance care planning (ACP); pediatric palliative care; palliative medicine; medical orders for life-sustaining treatment (MOLST) Received: February 15, 2018 Accepted: March 08, 2018 Published: April 03, 2018 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.

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Crossref · 10.18632/oncotarget.24929

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  • Shared decision making improves end-of-life care, particularly concordance between care desired and care received, according to a systematic review and most recent studies.

    “Its use has been shown to improve end-oflife care, particularly in relation to concordance between care desired and care received, in a systematic review 65 and most recent studies. 60,66 70”

    From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [65]

    The Results (no page number available) report that a documented do-not-resuscitate order was followed in 62 of 63 cases, supporting concordance between documented plans and care received. But the Discussion describes this as a retrospective, single-center pediatric home-care study and says it could not determine whether care matched families’ perceptions. It does not establish that shared decision making improved concordance compared with care without it; the systematic review is separately cited in the citing sentence. (LLM, conf=0.87)

    Experimental — accuracy not yet measured

  • Communication in the context of shared decision-making is associated with higher patient/family satisfaction and increased decisional confidence, as suggested by four systematic reviews.

    “Communication in the context of shared decision-making is associated with higher patient/ family satisfaction and increased decisional confidence, as suggested by four systematic reviews. 65,71,72,74”

    From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [65]

    The Discussion says parents regard advance care planning discussions as important, but it does not report an association with family satisfaction or decisional confidence. It calls for future research on how parents felt about their decisions. Searches for satisfaction, decisional confidence, and systematic reviews found no passage supporting the attributed finding. (LLM, conf=0.76)

    Experimental — accuracy not yet measured

  • Studies reporting the effect of shared decision making on quality of care and symptom control have produced conflicting findings.

    “However, studies reporting the effect on quality of care and symptom control have produced conflicting findings. 65”

    From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [65]

    The Discussion reports that advance care planning appeared to affect end-of-life outcomes in this cohort, but it does not describe conflicting findings across studies about quality of care or symptom control. Searches for conflicting findings, quality of care, and symptom control found no passage addressing that claim; the Introduction instead says that few comparable pediatric studies were available. (LLM, conf=0.76)

    Experimental — accuracy not yet measured

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Research works printed but not linked: 29

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Metadata

Authors
Hoell, J. I., Weber, H. L., Balzer, S., Danneberg, M., Gagnon, G., Trocan, L., Borkhardt, A., Janßen, G., & Kuhlen, M.
Affiliations
Heinrich Heine University Düsseldorf (DE)
ORCID
Venue
Oncotarget
Publisher
Impact Journals, LLC
Published
2018-04-03
Volume
9
Issue
25
Pages
17867-17875
ISSN
1949-2553 (ISSN-L)
DOI
10.18632/oncotarget.24929
PMC
PMC5915160
OpenAlex
W2796325056
Cited by
18
References
2
Citations by year
2026: 2 · 2024: 1 · 2023: 1 · 2022: 3 · 2021: 6 · 2020: 3 · 2019: 1 · 2018: 1
FWCI
2.62
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • Oncotarget (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
Keywords
advance care planning, pediatric palliative care, home care, Medical Orders for Life-Sustaining Treatment, DNACPR, end-of-life care, place of death, treatment limitations, children with life-limiting illness, parental decision-making, hospice care, pediatric oncology, hematology, clinical immunology, palliative care team

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