Abstract
Background
Medical 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.
Methods
A 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.
Results
15 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.
Conclusion
Surrogate 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.
Supplementary Information
The online version contains supplementary material available at 10.1186/s12910-025-01276-4.
Keywords: Surrogate decision-making, Substituted decision-making, Mental disability, Incapacity, Autonomy, Guidelines, Quality of life, Best interests, Assessment
Introduction
Decision-making for individuals lacking the competence to consent to medical treatment presents significant ethical, clinical, and legal challenges. In Switzerland, individuals can create advance directives (also known as living wills) to document their medical treatment preferences in case they lose capacity in the future [1]. However, many people either do not create such documents or become unable to do so, leaving their treatment preferences unknown at the time decisions must be made [2]. Two patient populations are especially affected by this issue: (1) adults who have lost the capacity for judgement and have not expressed prior wishes, and (2) individuals with congenital or lifelong cognitive impairments who have never had the capacity to articulate their will [1].
In such situations, surrogate decision-making becomes necessary. This refers to the process by which another person – typically a family member, guardian, or legally authorised proxy – makes medical decisions on behalf of someone who lacks decision-making capacity [3–6]. The surrogate may rely on various decision-making standards, most notably the best interest standard and the substituted decision-making model [7–10]. The latter involves reconstructing the decisions the person would have made if they had retained the capacity for judgement, based on their known values, beliefs, or prior behaviour [11, 12].
Applying these standards, however, is far from straightforward [13, 14]. While some decisions (such as symptom relief or pain management) may be relatively uncontroversial, others – such as whether to withhold or withdraw life-sustaining treatments – are far more ethically complex [15–18]. These dilemmas are especially pronounced when the individual’s preferences are entirely unknown, and when there is no documented advance directive or prior conversation to guide the surrogate. Although the Swiss Civil Code outlines general provisions for guardianship and the use of advance directives [1], it does not offer specific guidance on how surrogates should approach medical decision-making in the absence of clear patient preferences. There is no nationally established framework detailing how to operationalise surrogate decision-making in these cases. As Bosisio et al. have noted [19], existing tools do not adequately support surrogate decisions in situations in which the will of the person is unknown, particularly for individuals with lifelong incapacity. The lack of standardised guidance leaves surrogate decision-makers, families, and clinicians with considerable uncertainty [20]. Moreover, surrogate decisions are often made under time pressure or in emotionally charged circumstances, further complicating the ethical and clinical reasoning involved. While surrogate decision-making theoretically aims to promote either the person’s best interests or their presumed will, there remains a striking absence of procedural clarity on how to translate these ethical standards into actionable decisions [21].
This scoping review aims to map the existing literature on surrogate decision-making and advance care planning (ACP) for individuals who lack decision-making capacity and have not expressed prior wishes. The goal is to identify key normative concepts, practical approaches, and gaps in the current literature, in order to inform the development of ethically robust and clinically applicable guidance.
Methods
Study design
This study employed a scoping review methodology to identify, describe, and synthesise literature addressing surrogate decision-making in cases where individuals have either a congenital or acquired incapacity of judgement and no known expressions of will. Given the conceptual heterogeneity and normative complexity of the topic, a scoping review was chosen as it allows for broader mapping of evidence without restricting analysis to specific study designs [22]. The review followed the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines [23, 24]. All results were discussed and validated in team meetings. Any disagreements were solved by consensus.
Eligibility criteria
Inclusion criteria
Articles published in English or German from 2010 onward.
Studies discussing how medical decisions should be made and documented for and on behalf of adults who are no longer capable of judgement and whose presumed will is unknown and for people with lifelong incapacity due to cognitive impairments.
Theoretical works, empirical studies, and literature reviews were all included.
Studies focusing on ethical principles, clinical approaches, or legal frameworks relating to surrogate decision-making.
Exclusion criteria
Books/Book chapters and grey literature.
Studies addressing individuals who retain partial capacity or whose prior wishes have been clearly documented.
Information sources and search strategy
The literature search was conducted across four databases: PubMed, Scopus, Web of Science (all searched on 22 May 2023), and Google Scholar (searched on 27 May 2023). Search strategies were developed collaboratively within the research team. Final search terms are presented in Supplementary Material under Tables S1–4.
Selection process
The literature identified in the different databases were de-duplicated manually and initially screened by title according to the specified inclusion and exclusion criteria (mentioned above). Afterwards the abstracts and then the full texts of the papers were screened according to the same inclusion and exclusion criteria. Finally, 15 papers were found to be of relevance as shown in Fig. 1. Screening was conducted primarily by one reviewer (HS) in close consultation with the rest of the research team.
Fig. 1.
PRISMA flowchart for identification, screening, and inclusion of studies [24]
Data extraction and data items
The spreadsheet software Microsoft Excel was used for data extraction. The following elements were included: author(s) and year of publication, title, journal in which the paper was published, country of origin, aim(s) of the paper, method(s)/study type, setting/population, results, reflections and comments from the reviewer and the categories specifically related to our research question.
Synthesizing and reporting the results
A qualitative content analysis, as recommended by the JBI Scoping Review Methodology Group, was used to identify and group the extracted findings into thematic categories. The results are reported narratively [25].
Results
15 studies met the inclusion criteria (see Table S5 under Supplementary Material). Six were from the United States, two each from the Netherlands, the United Kingdom, and Germany, and one from Norway. The included literature consisted of eight theoretical papers, four qualitative studies, two literature reviews, and one secondary analysis of existing survey data.
Best interest standard and specification of interests
Seven studies examined the ethical foundations and terminology surrounding the concept of best interests. Andersson and Johansson proposed that surrogate decisions should be based on what serves the individual’s best interests – typically interpreted as minimising pain, relieving suffering, or preserving bodily function [26].
In der Schmitten investigated so-called advance directives by proxy (AD-Ps) in German nursing homes – documents completed and signed by legal surrogates. These were often weakly grounded in ethical reasoning: in only 4% of cases was the decision-making process based explicitly on an effort to determine best interests [27].
Kapp and Birchley further explored the theoretical underpinnings of best interest reasoning, drawing on principles such as beneficence, consequentialism, and rights-based ethics [28, 29]. These works pointed to the difficulty of grounding best interests without drifting into subjective or paternalistic territory.
A key distinction was made between experiential interests (e.g. deriving pleasure from music or food) and critical interests (e.g. the desire for meaningful relationships or integrity). Drawing on Ronald Dworkin’s philosophy, several authors argued that even individuals with profound cognitive impairments can hold such interests and that these should inform surrogate decision-making [26, 30–32]:
Experiential
interests were classified as those “that we value because we like the experience of doing them” [30], such as listening to music or the desire for a big piece of chocolate cake. In this context, Brudney [31] objected, that desires can be transient, arbitrary, sometimes trivial and therefore, they do not provide a sufficient moral underpinning to determine medical treatment decision. However, even a patient who lacks the capacity for decision-making may have experiential interests/preferences that – given the demand for the respect for autonomy – have moral value beyond what is relevant for surrogates on promoting the best interests [30, 32].
Critical
interests were said to contribute to “what makes a life good” [26] which was defined as close personal relationships, valuable accomplishments and living with integrity. It was stated that if people’s critical interests are not satisfied, their lives deteriorate, even if they are not able to name in detail what their critical interests are due to mental impairment. It was further argued that critical interests involve general judgments about what is valuable and what people should or could expect from their lives and therefore, critical interests are not time-bound. Although cognitively impaired people no longer have a clear sense of their critical interests as they have no sense of their lives as a whole or of the kind of plans and goals that structure a life narrative, they still have critical interests that surrogates should use to guide their decisions [30].
Substituted decision-making
Several studies explicitly addressed substituted decision-making – the strategy whereby surrogates attempt to reconstruct what the individual would have decided under the given circumstances. This approach is widely viewed as the most autonomy-respecting method when previous wishes are unavailable [26].
According to Schaider et al., substituted decision-making is very helpful for physicians in decision-making, taking into account current behaviour, current life circumstances, social relationships and habits in the exchange with the surrogates [33]. But in semi-structured interviews, these physicians also mentioned numerous uncertainties and difficulties of psychological, social, practical and conceptual nature during the process of reconstructing the decisions that individuals would have made themselves: relatives may be overburdened, for example, and disagreements within the patient’s family or between the family and the treatment team may be another source of difficulty.
As mentioned in the section Best interest standard and specification of interests, In der Schmitten analysed the form, content, validity and applicability of AD-Ps [27]. He writes that, as ethical justification, the underlying treatment decisions for an incompetent person should be made according to the best interest standard or according to the substituted judgement standard. In addition to references to current verbal statements, references to a pre-existing advance directives and references to relevant previous verbal statements, the substituted judgement standard includes references to non-verbal (behavioural) indications of the resident’s wishes, references of presumed wishes and references to attitudes or values, if the patient’s preferences are unknown. Given the enormous variety of AD-Ps, ranging from short one-sentence notes in nursing charts to separate 4-page documents, most of them using free wording, there are no ideas for a structured assessment of these notes in general.
Parsons and Ives, examining dialysis decisions for cognitively impaired adults, underscored ethical challenges including inconsistencies in applying decision-making principles, cultural sensitivity, and the tension between medical and non-medical factors [34].
Quality of life (QoL)
Quality of life emerged as a recurring and contested consideration [35]. While some authors supported the inclusion of QoL considerations in surrogate decisions, others warned that the lack of validated assessment tools for non-verbal or severely impaired individuals creates significant risks of misjudgement. Kapp argued for a multidimensional view of QoL that includes not only physical pain and emotional suffering, but also dignity, relational well-being, and environmental factors such as family support [28]. Nieuwenhuijse et al. found that clinicians were often hesitant to assess QoL due to its inherent subjectivity, particularly when the person could not speak for themselves [36]. However, in their analysis of the elements associated with good and poor QoL, three central clusters emerged: The first includes values assigned to the emotional cluster (e.g., pleasure, enjoyment, and satisfaction). The second comprises values that can only be realized through interpersonal relationships – the relational cluster (e.g., meaningful connections with others or a supportive environment). These are complemented by values related to the physical cluster (e.g., freedom from pain and preservation of physical integrity).
According to Wagemans et al., a main reasons for caution in discussing this topic is the pervasive uncertainty, since uniform and validated instruments to measure or objectify QoL for those unable to speak for themselves are lacking [35]. Therefore, physicians were said to be reluctant to talk about the QoL of people with profound intellectual and multiple disabilities because of its subjectively influenceable interpretation according to Nieuwenhuijse et al. [36].
Patient preference predictor (PPP)
Given the difficulties in decision-making and the associated emotional burden on surrogates, four papers focused on the idea of an electronic PPP, that could predict people’s treatment preferences much more accurately than their surrogates’ predictions, based on the individual characteristics of the incapacitated person and information about which treatment preferences are correlated with those characteristics.
According to Rid and Wendler, the idea of using these algorithm-based PPPs to support treatment decisions for patients incapable of making decisions was strongly supported by surrogates and since a preliminary PPP was found to be as accurate as surrogates in predicting patient preferences, it could be justified both conceptually and normatively [37]. However, other authors pointed to important limitations. Howard et al. noted that the effective use of PPPs presupposes access to substantial background knowledge about the individual in question – knowledge that is often unavailable, particularly in the case of individuals with lifelong incapacity or limited family involvement [38]. In such cases, the reliability of algorithmic predictions may be compromised [39].
Lindemann and Nelson offered a broader philosophical critique, arguing that predictions are not equivalent to decisions. They emphasised the relational, narrative, and deeply human elements of knowing someone over time – factors that cannot be captured by algorithms. While PPPs may inform decisions, they cannot replace the ethical and relational responsibility embedded in surrogate decision-making [40].
Discussion
This scoping review highlights the complex ethical terrain of surrogate decision-making in the absence of known preferences, particularly for individuals with congenital cognitive impairments or those who have acquired incapacity of judgement without prior expression of will. Across the reviewed literature, there is widespread recognition of the lack of clear, detailed, and practical guidance on how such decisions should be made and documented.
Ethical standards: best interests and substituted decision-making
The two dominant ethical frameworks found in the literature were the best interest standard and substituted decision-making. While the best interest approach focuses on promoting overall well-being and avoiding harm, substituted decision-making aims to reconstruct the choice the individual would have made, had they been capable of doing so. Both approaches, however, were frequently described as difficult to apply in practice, particularly when no clear evidence of the person’s values or past preferences exists.
Authors such as Andersson and Johansson, and Graham argued that even individuals with profound cognitive impairments possess experiential and critical interests that should be acknowledged in ethical reasoning [26, 30]. However, these interests are often difficult to specify or operationalise. The literature suggested that surrogates and clinicians face considerable uncertainty in interpreting such interests without clear procedural standards or validated tools.
Challenges in implementation
A major theme across the empirical studies was the practical difficulty of surrogate decision-making, even when guided by ethical ideals. Schaider et al. and Parsons and Ives, both documented the challenges faced by clinicians in reconstructing preferences, navigating family dynamics, and balancing competing ethical considerations [33, 34]. In particular, substituted decision-making often requires interpreting ambiguous or fragmented cues from the individual’s past behaviour or relationships. Additionally, patients may revise their goals and values as their illness progresses, which further complicates decision-making – even in the presence of advance directives or previously expressed preferences.
Further challenges include inconsistencies in documentation (as shown in the wide variety of formats for AD-Ps) and the absence of structured processes for validating surrogate decisions [27]. Although the legal frameworks of many countries permit surrogate decision-making, this review identified a regulatory gap: clear standards for how such decisions – particularly when using substituted decision-making – should be documented, justified, or reviewed are often lacking or inconsistently applied.
A path forward: the need for objective anchors
A recurring issue in the literature is the subjectivity of surrogate assessments, especially in evaluating best interests or interpreting possible preferences. This raises the question of whether it is possible to identify a set of objective or essential values that can serve as anchor points for decision-making – particularly in situations with high stakes or unclear preferences.
Some authors have proposed focusing on broadly shared human values that reflect key aspects of dignity, well-being, and autonomy: Reflecting elements of quality of life (QoL), Kapp argued for a multidimensional view of QoL that encompasses not only physical pain and emotional suffering, but also dignity, relational well-being, and environmental factors such as family support [28]. According to Nieuwenhuijse et al. values can be grouped into emotional (e.g., enjoyment, comfort), relational (e.g., meaningful connections), and physical (e.g., pain avoidance, bodily integrity) clusters [36]. Incorporating such values as “care goals” could help standardise the surrogate decision-making process. Such an approach would offer greater clarity, transparency, and legitimacy – particularly in acute care contexts where rapid, ethically sound decisions are required.
Role of patient preference predictors (PPPs)
The proposal to support decision-making with algorithmic tools such as PPPs reflects a novel but controversial development. While some studies (e.g., Rid and Wendler) highlighted their potential to improve accuracy and reduce emotional burden, others raised important objections [37]. These included concerns about the data required to make reliable predictions and the inability of algorithms to capture the nuanced, relational knowledge that often guides good surrogate decision-making.
PPPs may serve as supplementary tools in surrogate decision-making, but they cannot replace the ethical deliberation and personal responsibility required of human surrogates. Lindemann and Nelson’s warning, that predictions are not decisions, emphasises the relational and moral accountability that must remain central [40].
At this point, a key tension emerges between outcome-based arguments (i.e., PPPs are as accurate as surrogates) and process-based critiques (i.e., prediction lacks moral legitimacy). The empirical finding that PPPs perform as well as human surrogates does not, by itself, resolve whether algorithmic decision-making is ethically acceptable or desirable. This raises a fundamental question: Is the “right” decision more important, or is it the process by which the decision is made?
To reconcile these perspectives, a hybrid framework would be needed, that integrates the predictive strengths of PPPs with the ethical accountability of human surrogates: Key components should include context-sensitive use of PPPs; they should not replace surrogates but serve as decision aids, especially in situations where the surrogate is uncertain, unavailable, or under significant emotional stress. The basis for algorithmic predictions must be explainable and verifiable so that surrogates and clinicians can assess their relevance and limitations in context in a transparent and interpretable manner. Finally, PPPs should be embedded in a broader process that recognizes the relational knowledge and moral responsibility of the surrogate rather than supplanting it.
Conclusion
Surrogate decision-making for individuals with congenital incapacity or acquired incapacity of judgement – specially in the absence of prior expressions of will – remains ethically complex and procedurally unclear. Despite widespread recognition of the need for national guidance, existing frameworks are insufficiently detailed and lack actionable steps to support decisions in practice.
While the ethical foundations of surrogate decision-making – particularly through the best interest standard and substituted decision-making – are well discussed in the literature, their translation into real-world clinical processes is underdeveloped. In the absence of validated tools, structured decision-making criteria, and legal documentation standards, surrogates and clinicians face substantial uncertainty.
This review underscores the need for specific, practically applicable guidelines. These should:
clearly define the values and principles underpinning surrogate decision-making;
translate these principles into stepwise procedures for clinical and legal use;
provide structured tools to support consistent and transparent documentation;
consider how relational, emotional, and physical care goals can be operationalised for both acute medical decisions and anticipatory planning.
The development of such guidance would not only improve the consistency and legitimacy of surrogate decisions, but also help protect the dignity and well-being of individuals who cannot express their preferences themselves. Moreover, the same principles could support the development of advance care planning (ACP) tools for individuals who lack capacity. Rather than attempting to simulate prior expressions of will, ACP in such contexts could be structured around these core care goals, balancing respect for the person’s dignity with practical and clinical feasibility.
Limitations
This review has several limitations. First, the literature search was restricted to articles published in English or German from 2010 onwards. This timeframe was chosen based on the authors’ judgement that it reflects the beginning of a broader public and policy debate in Switzerland following the 2008 amendment to adult protection law. However, relevant earlier or non-English/German studies may have been excluded. Second, books, book chapters, and grey literature were not included. This means that some relevant insights – particularly from policy papers, legal commentary, or institutional reports – may not have been captured. Third, while the inclusion of both theoretical and empirical studies was a strength, it also introduces heterogeneity in terms of methodology, scope, and quality. The generalisability of findings is therefore limited, and the review should be seen as exploratory rather than exhaustive. Finally, the search was conducted across four databases, which may not have captured all available literature on this interdisciplinary topic, particularly from the fields of law, social science, or disability studies.
Supplementary Information
Authors’ contributions
All research group members (HS, EDC, DG, PKC, RBH, JS) took part in regular team meetings to define the search criteria, discuss the inclusion/exclusion criteria and the results. After RBH retired as head of the institute, the work was continued by JS. The search itself and the primary evaluation were carried out by HS. HS created figure and tables. HS and JS wrote the main text of the manuscript. EDC, DG and PKC contributed to the corrections.
Funding
The authors did not receive support from any organization for the submitted work.
Data availability
All data generated or analysed during this study are included in this published article (and its supplementary information files).
Declarations
Ethics approval and consent to participate
Not applicable (for this article no studies with human participants or animals were performed by the authors).
Consent for publication
Not applicable (the manuscript does not contain data from any individual person).
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
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Supplementary Materials
Data Availability Statement
All data generated or analysed during this study are included in this published article (and its supplementary information files).