ArticleBMC medical ethics2025
Surrogate decision-making for people with congenital or acquired incapacity of judgement in the absence of known preferences: a scoping review.
Article in BMC medical ethics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
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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.
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMedical decision-making for individuals lacking the capacity to consent often involves ethically and emotionally challenging deliberations, how to make appropriate surrogate decisions in acute settings, and how to plan in advance. This is particularly true for two patient populations: (1) adults who have lost their decision-making capacity and whose presumed wishes are unknown, and (2) individuals with congenital incapacity due to lifelong cognitive impairments. This study aimed to critically synthesize the existing literature on surrogate decision-making and advance care planning (ACP) for these populations, as there are currently no detailed national guidelines for navigating such complex situations.
methodsA scoping review was conducted in accordance with PRISMA-ScR guidelines. Four databases (PubMed, Scopus, Web of Science, and Google Scholar) were searched. Eligible articles included those published in English or German since 2010 that addressed decision-making and documentation for adults lacking judgement capacity and whose preferences are unknown.
results15 relevant publications were included. These addressed key concepts such as the best interest standard, substituted decision-making and quality of life, and reflected on the use of tools like Patient Preference Predictors. However, none offered detailed guidance on how to implement surrogate decision-making or ACP in practice for cognitively impaired individuals.
conclusionSurrogate decision-making for individuals without known preferences or a living will remains insufficiently structured and ethically ambiguous. While the need for national guidelines is widely recognized, existing frameworks fail to translate ethical principles into practical, actionable steps. The development of detailed, transparent, and ethically grounded guidelines is urgently required to support decision-making in clinical practice.
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