Evidence map›Paper›PMID 40615857›Full record

SynthesisBMC medical ethics2025

Reconstruction of patients' treatment preferences in disorders of consciousness: a systematic review.

Niek Kok, Willemijn van Erp, Marjan J Meinders, Jelle van Gurp

Abstract readSystematic Review
In one paragraph

Synthesis in BMC medical ethics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
  2. 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

4 authors.

Niek KokDepartment of IQ Health, Radboud University Medical Center, Nijmegen, the Netherlands. niek.kok@radboudumc.nl.
Willemijn van ErpDepartment of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.
Marjan J MeindersDepartment of IQ Health, Radboud University Medical Center, Nijmegen, the Netherlands.
Jelle van GurpDepartment of IQ Health, Radboud University Medical Center, Nijmegen, the Netherlands.

Funding

ZonMw 06390032210029
6 · The paper itself

Abstract

backgroundPatients with disorders of consciousness (DoC) are unable to partake in the decision making process concerning their treatment. In the process of medical decision-making, which in DoC often concerns life-and-death decisions, surrogates and healthcare professionals may try to reconstruct the treatment preferences of these patients. We aimed to identify which values and criteria have been used in various national care contexts to reconstruct the treatment preferences of incapacitated DoC patients and how reconstruction is conducted in practice.

methodsThis is a systematic review of the of conceptual and empirical ethical literature. A search was performed in seven databases (Pubmed, Web of Science, Embase, the Cochrane Library, CINAHL, PsychINFO, and Sociological Abstracts). We used thematic analysis to identify values and criteria for reconstruction of treatment preferences.

results8.591 records were screened. In total, 17 conceptual studies and 13 empirical studies on preference reconstruction were included. We identified three normative-epistemic viewpoints on reconstruction of treatment preferences: a correspondence view which aims to respect personal autonomy and prioritizes the accuracy of reconstructed preferences; a coherence view which aims to respect personal identity and prioritizes the consistency of the preferences with the patient's lifeworld; and a communitarian view which aims to respect community and prioritizes the ongoing relation of a patient with family and friends. These views diverge on the problem of what makes for a good process of preference reconstruction. Additionally, treatment preferences of patients in DoC are inferred based on either past oral statements or on observations of patients' current behavior. The criteria that guide reconstructive efforts may evolve, especially when patients improve from UWS to MCS and when reconstructed preferences based on past statements and patient's current inferred psychological mental states steer treatment in mutually exclusive directions. There is no current standard approach to reconstructing treatment preferences in incapacitated DoC patients.

conclusionsWe recommend physicians to ask diversely formulated questions that stimulate surrogates towards giving multiple and rich answers. Simultaneously, physicians are advised not to overly test a surrogate's testimony because this may lead to an erosion of trust.

Indexed as

Consciousness DisordersDecision MakingPatient PreferenceHumansPersonal AutonomyClinical decision-makingDisorders of ConcsiousnessEpistemologyEthicsSystematic reviewTreatment preferences

Identifiers

PMID40615857
PMCPMC12231754

What OpenQuestion holds

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Registered trials

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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 OpenQuestion graph.