Volume 110, Issue 7 pp. 2074-2081
REGULAR ARTICLE

Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants

Jean-Claude Fauchère

Corresponding Author

Jean-Claude Fauchère

Department of Neonatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland

Correspondence

Jean-Claude Fauchère, Department of Neonatology, Perinatal Centre, University Hospital Zurich, Frauenklinikstrasse 10, CH – 8091 Zurich, Switzerland.

Email: [email protected]

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Sabine D. Klein

Sabine D. Klein

Department of Neonatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland

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Manya J. Hendriks

Manya J. Hendriks

Department of Neonatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland

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Ruth Baumann-Hölzle

Ruth Baumann-Hölzle

Dialogue Ethics Foundation, Interdisciplinary Institute for Ethics in Healthcare, Zurich, Switzerland

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Thomas M.B. Berger

Thomas M.B. Berger

Department of Neonatology, University Children’s Hospital Basel, Basel, Switzerland

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Hans Ulrich Bucher

Hans Ulrich Bucher

Department of Neonatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland

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the Swiss Neonatal End-of-Life Study Group

the Swiss Neonatal End-of-Life Study Group

Members of the Swiss Neonatal End-of-Life Study Group are listed in the Appendix S1.

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First published: 03 March 2021
Citations: 11

Funding information

This work was supported by a grant from the Swiss National Research Foundation on ‘End-of-Life Decisions’ (SNRF National Research Project NRP 67 No. 406740_13950/1)

Abstract

Aim

Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-making.

Methods

Self-administered web-based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible.

Results

There was a high degree of agreement between physicians and nurses (response rates 79% and 70%, respectively) that the ability for social interactions was a minimal criterion for an acceptable quality of life. A majority stated that the parents' interests are as important as the child's best interest in shared decision-making. Only a minority considered the parents as the best judges of what is their child's best interest. Significant differences in attitudes and values emerged between neonatal physicians and nurses. The language area was very strongly associated with the attitudes of neonatal caregivers.

Conclusion

Despite clear legal requirements and societal expectations for shared decision-making, survey respondents demonstrated a gap between their expressed commitment to shared decision-making and their view on parental aptitude to formulate their infant's best interest. National guidelines need to address these barriers to shared decision-making to promote a more uniform nationwide practice.

CONFLICT OF INTEREST

The authors have no conflict of interests to disclose.

DATA AVAILABILITY STATEMENT

The dataset generated and analysed during the current study is not publicly available, since confidentiality was guaranteed towards the respondents and the participating NICUs. However, all data are presented in aggregated forms in the Tables and Figures.

The full text of this article hosted at iucr.org is unavailable due to technical difficulties.