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Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10155355/ https://www.ncbi.nlm.nih.gov/pubmed/37138282 http://dx.doi.org/10.1186/s12904-023-01170-z |
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author | Limacher, Regula Fauchère, Jean-Claude Gubler, Deborah Hendriks, Manya Jerina |
author_facet | Limacher, Regula Fauchère, Jean-Claude Gubler, Deborah Hendriks, Manya Jerina |
author_sort | Limacher, Regula |
collection | PubMed |
description | BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process. METHODS: A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included. RESULTS: Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents’ wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team. CONCLUSION: Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences. |
format | Online Article Text |
id | pubmed-10155355 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-101553552023-05-04 Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns Limacher, Regula Fauchère, Jean-Claude Gubler, Deborah Hendriks, Manya Jerina BMC Palliat Care Research BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process. METHODS: A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included. RESULTS: Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents’ wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team. CONCLUSION: Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences. BioMed Central 2023-05-03 /pmc/articles/PMC10155355/ /pubmed/37138282 http://dx.doi.org/10.1186/s12904-023-01170-z Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Limacher, Regula Fauchère, Jean-Claude Gubler, Deborah Hendriks, Manya Jerina Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns |
title | Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns |
title_full | Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns |
title_fullStr | Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns |
title_full_unstemmed | Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns |
title_short | Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns |
title_sort | uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10155355/ https://www.ncbi.nlm.nih.gov/pubmed/37138282 http://dx.doi.org/10.1186/s12904-023-01170-z |
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