Navigating Ambiguity and Uncertainty in End-of-Life Care Research Practice

Researchers frequently face conceptual, methodological, and ethical decisions - collectively known as researcher discretion - that can substantially influence research outcomes. Despite its importance, the nature of these discretionary moments and their triggers in everyday research practice remain underexplored. Based on an abductive thematic analysis of fieldnotes, documents, and interviews from twelve months of ethnographic fieldwork in two end-of-life care research groups between 2020 and 2022, we found that uncertainty and moral ambiguity prompted researchers to shift from intuitive to reflective decision-making, requiring discretion. While uncertainty could in principle be reduced by further inquiry, practical constraints often made this unworkable. Moral ambiguity stemmed from conflicting values that no additional information could resolve. These findings suggest that strict adherence to protocols or ethical frameworks may be insufficient to ensure responsible conduct of research, and should be complemented by building researchers' capacity to navigate discretion and both identify and responsibly exercise their researcher discretion.

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Publication Details

Journal
Journal of Empirical Research on Human Research Ethics
Published
2025-09-24
DOI
https://doi.org/10.1177/15562646251377121
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
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article

Navigating Ambiguity and Uncertainty in End-of-Life Care Research Practice

M. Nienke Slagboom, Ria Reis, Jenny Theodora van der Steen, L.M. Bouter et al.
Journal of Empirical Research on Human Research Ethics
Ethics in Clinical Research
article

Navigating Ambiguity and Uncertainty in End-of-Life Care Research Practice

M. Nienke Slagboom, Ria Reis, Jenny Theodora van der Steen, L.M. Bouter, Tom van Drimmelen
article en

Abstract

Researchers frequently face conceptual, methodological, and ethical decisions - collectively known as researcher discretion - that can substantially influence research outcomes. Despite its importance, the nature of these discretionary moments and their triggers in everyday research practice remain underexplored. Based on an abductive thematic analysis of fieldnotes, documents, and interviews from twelve months of ethnographic fieldwork in two end-of-life care research groups between 2020 and 2022, we found that uncertainty and moral ambiguity prompted researchers to shift from intuitive to reflective decision-making, requiring discretion. While uncertainty could in principle be reduced by further inquiry, practical constraints often made this unworkable. Moral ambiguity stemmed from conflicting values that no additional information could resolve. These findings suggest that strict adherence to protocols or ethical frameworks may be insufficient to ensure responsible conduct of research, and should be complemented by building researchers' capacity to navigate discretion and both identify and responsibly exercise their researcher discretion.

Journal of Empirical Research on Human Research EthicsVol. 20(5)
Radboud University Nijmegen (NL), University of Cape Town (ZA), Leiden University Medical Center (NL), Radboud University Medical Center (NL), Amsterdam Institute for Global Health and Development (NL), Amsterdam University Medical Centers (NL), Vrije Universiteit Amsterdam (NL)
Openalex Percentile: Top 65%
Ethics in Clinical Research
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