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

Tom van Drimmelen¹, M Nienke Slagboom¹, Ria Reis^1,2,3

¹Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.

Journal of Empirical Research on Human Research Ethics : JERHRE

|September 24, 2025

Summary

Researcher discretion, involving complex decisions, is crucial in research. Uncertainty and moral ambiguity trigger reflective decision-making, highlighting the need for enhanced researcher training beyond standard protocols.

Keywords:

end-of-life care research ethnographic research moral ambiguity researcher degrees of freedom researcher discretion responsible conduct of research uncertainty

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Area of Science:

Social Sciences
Research Ethics
Qualitative Research Methods

Background:

Researcher discretion significantly impacts research outcomes.
The nature and triggers of researcher discretion in daily practice are underexplored.

Purpose of the Study:

To investigate the triggers and nature of researcher discretion in end-of-life care research.
To understand how researchers navigate uncertainty and moral ambiguity.

Main Methods:

Abductive thematic analysis of ethnographic fieldwork data.
Analysis of fieldnotes, documents, and interviews from two end-of-life care research groups (2020-2022).

Main Results:

Uncertainty and moral ambiguity were identified as key triggers for researcher discretion.
Practical constraints often limited the resolution of uncertainty through further inquiry.
Moral ambiguity arose from irreconcilable value conflicts.

Conclusions:

Protocols and ethical frameworks alone are insufficient for responsible research conduct.
Developing researchers' capacity to identify and exercise discretion is essential.
Training should focus on navigating complex ethical and methodological decisions.