Evidence map›Paper›PMID 40990906›Full record

ArticleJournal of empirical research on human research ethics : JERHRE2025

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

Tom van Drimmelen, M Nienke Slagboom, Ria Reis, Lex M Bouter, Jenny T van der Steen

Abstract read
In one paragraph

Article in Journal of empirical research on human research ethics : JERHRE, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Tom van DrimmelenDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0003-1291-9404
M Nienke SlagboomDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0001-8462-9065
Ria ReisDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0001-8249-0856
Lex M BouterAmsterdam Public Health research institute, Department of Epidemiology and Data Science, Amsterdam University Medical Centers, Amsterdam, the Netherlands.ORCID 0000-0002-2659-5482
Jenny T van der SteenDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0002-9063-7501

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Decision MakingEthics, ResearchMoralsResearch PersonnelTerminal CareAnthropology, CulturalHumansQualitative ResearchResearch DesignUncertaintyend-of-life care researchethnographic researchmoral ambiguityresearcher degrees of freedomresearcher discretionresponsible conduct of researchuncertainty

Identifiers

PMID40990906
PMCPMC12586724

What Socratic holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.