Despite the increased prevalence of bioethics research that seeks to use empirical data to answer normative research questions, there is no consensus as to what an appropriate methodology for this would be. This review aims to search the literature, present and critically discuss published Empirical Bioethics methodologies.

In our seventh and final piece on the theme “Good without God”, Jonathan Ives argues that reliance on God as an external source of moral authority leads to a kind of moral cowardice.

In this paper we discuss the influence of war as a metaphor in the context of the COVID-19 pandemic. After an introduction on the traditional analysis of the war metaphor, we address the social consequences of using this metaphor, a topic that has been widely debated with regard to public communication in the context of COVID-19. We pay particular attention to a theory that many intellectuals have raised: the possibility that the use of the metaphor in this context is harmful (...) to a democratic society because it may lead citizens to accept limited civil liberties and authoritarian policies. After presenting the extensive literature on the use of the war metaphor before and during the COVID-19 pandemic, in the final section of the paper, we analyse experimental evidence of the effects of this metaphor. In the conclusion, we hint at open questions and suggest that the current evidence does not support claims of direct liberticidal influence. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

Ernesto Laclau and Chantal Mouffe have attempted to save the concept of ?hegemony? from its economistic and essentialist Marxist roots by incorporating the linguistic influences of post?structuralist theory. Their major Marxist detractors criticise their trajectory as a ?descent into discourse? ? a decay from well?grounded, material reality into the idealistic and problematic realm of language and discourse. Both sides of the debate seem to agree on one thing: the line from Marxism to post?Marxism is the line from the economy to (...) language, from ?reality? to discourse. This article focuses on Gramsci?s writings on language to argue against both sides of this debate. It illustrates how language is central to Gramsci?s historical materialism and that he does not oppose it to materiality. It argues that Gramsci adopted the very term hegemony substantially from his university studies in linguistics ? the debates from which Ferdinand de Saussure also developed structuralism. For Gramsci, such linguistic issues were directly related to the ?questione della lingua? and Italian unification. Moreover, language lies at the centre of Gramsci?s understanding of the relationship between coercion and consent. This not only troubles Laclau & Mouffe?s reading of Gramsci, but it illuminates a more productive conception of hegemony that can address recent debates around post?structuralism and the use of ?hegemony? to analyse globalisation and an increasingly technological and electronic world. (shrink)

O autor, na multiplicidade de seus aspectos, detém-se em considerações sobre o Estado, mas não se limita à perspectiva dos escritos tradicionais de Teoria Geral. Recolhe momentos de sua configuração histórica, de partes relevantes de sua fisionomia jurídica e, de modo particular, emite reflexões filosóficas sobre a morfologia estrutural e o sentido ético dessa entidade. O enfoque, porém, dista de ser mero tangenciar o assunto, porquanto insere, a cada passo, proposições que exprimem sua opinião pessoal e a ideologia de quem (...) anuncia mas, sobretudo, realiza com coerência e determinação, uma pauta de condutas orientada por valores definidos e estáveis. (shrink)

Aims:The aim of this narrative synthesis was to explore the necessary and sufficient conditions required to define moral distress.Background:Moral distress is said to occur when one has made a moral judgement but is unable to act upon it. However, problems with this narrow conception have led to multiple redefinitions in the empirical and conceptual literature. As a consequence, much of the research exploring moral distress has lacked conceptual clarity, complicating attempts to study the phenomenon.Design:Systematic literature review and narrative synthesis (November (...) 2015–March 2016).Data sources:Ovid MEDLINE®In-Process & Other Non-Indexed Citations 1946–Present, PsycINFO®1967–Present, CINAHL®Plus 1937–Present, EMBASE 1974–24 February 2016, British Nursing Index 1994–Present, Social Care Online, Social Policy and Practice Database (1890–Present), ERIC (EBSCO) 1966–Present and Education Abstracts.Review methods:Literature relating to moral distress was systematically retrieved and subjected to relevance assessment. Narrative synthesis was the overarching framework that guided quality assessment, data analysis and synthesis.Results:In all, 152 papers underwent initial data extraction and 34 were chosen for inclusion in the narrative synthesis based on both quality and relevance. Analysis revealed different proposed conditions for the occurrence of moral distress: moral judgement, psychological and physical effects, moral dilemmas, moral uncertainty, external and internal constraints and threats to moral integrity.Conclusion:We suggest the combination of (1) the experience of a moral event, (2) the experience of ‘psychological distress’ and (3) a direct causal relation between (1) and (2) together are necessary and sufficient conditions for moral distress. (shrink)

Caracterizar a demanda de atendimento psicológico e compreender a experiência dos profissionais que atuaram na pandemia do COVID-19, em uma plataforma de atendimento psicológico on-line. Realizou-se uma análise documental e entrevista semiestruturada com 20 psicólogos que atuaram no mínimo 6 meses na plataforma entre mar/2020 à dez/2022, em que foram atendidos um total 15.963 pacientes. Dentre as demandas, prevaleceram ideação suicida com planejamento, ansiedade e depressão. O perfil prevalente dos pacientes atendidos na pandemia corresponde à literatura, em períodos não pandêmicos, (...) bem como a prevalência de sintomas ansiosos e depressivos. Porém, destacou o surgimento do alto número de pacientes com ideação suicida, o que sugere um agravamento dos transtornos mentais, despertado pela pandemia, além de uma dificuldade comum aos entrevistados, relacionada a clareza dos critérios clínicos utilizados para determinação da gravidade dos casos. Os psicólogos apontaram dificuldades no manejo destes casos graves, intensificados pelo impacto emocional pandêmico também sentido por eles, junto ao despreparo para sua atuação online, as percebendo como limitações. Apesar do despreparo, a alta demanda incitou os profissionais aderirem as especificidades da modalidade. Estes relataram ter buscado aporte teórico e apoio emocional para manterem os recursos internos, cognitivos e emocionais, necessários ao setting terapêutico. Pode-se concluir que os resultados evidenciaram a importância de se refletir sobre os critérios de avaliação clínica utilizados para compreensão da severidade dos casos, sem deixar de considerar os recursos internos dos pacientes relativos à sua capacidade de sofrer, os quais podem ser identificados quando mantida a capacidade de rêverie do profissional. (shrink)

In this article we distinguish between philosophical bioethics (PB), descriptive policy orientated bioethics (DPOB) and normative policy oriented bioethics (NPOB). We argue that finding an appropriate methodology for combining empirical data and moral theory depends on what the aims of the research endeavour are, and that, for the most part, this combination is only required for NPOB. After briefly discussing the debate around the is/ought problem, and suggesting that both sides of this debate are misunderstanding one another (i.e. one side (...) treats it as a conceptual problem, whilst the other treats it as an empirical claim), we outline and defend a methodological approach to NPOB based on work we have carried out on a project exploring the normative foundations of paternal rights and responsibilities. We suggest that given the prominent role already played by moral intuition in moral theory, one appropriate way to integrate empirical data and philosophical bioethics is to utilize empirically gathered lay intuition as the foundation for ethical reasoning in NPOB. The method we propose involves a modification of a long-established tradition on non-intervention in qualitative data gathering, combined with a form of reflective equilibrium where the demands of theory and data are given equal weight and a pragmatic compromise reached. (shrink)

The definition of metabolic syndrome has been, and still is, extremely controversial. My purpose is not to give a solution to the associated debate but to argue that the controversy is at least partially due to the different ‘causal content’ of the various definitions: their theoretical validity and practical utility can be evaluated by reconstructing or making explicit the underlying causal structure. I will therefore propose to distinguish the alternative definitions according to the kinds of causal content they carry: definitions (...) grounded on associations, definitions presupposing a causal model built upon statistical associations, and definitions grounded on underlying mechanisms. I suggest that analysing definitions according to their causal content can be helpful in evaluating alternative definitions of some diseases. I want to show how the controversy over MetS suggests a distinction among three kinds of definitions based on how explicitly they characterise the syndrome in causal terms, and on the type of causality involved. I will call ‘type 1 definitions’ those definitions that are purely associative; ‘type 2 definitions’ the definitions based on statistical associations, plus generic medical and causal knowledge; and ‘type 3 definitions’ the definitions based on mechanisms. These kinds of definitions, although different, can be related to each other. A definition with more specific causal content may be useful in the evaluation of definitions characterised by a lower degree of causal specificity. Moreover, the identification of the type of causality involved is of help to constitute a good criterion for choosing among different definitions of a pathological entity. In section I introduce the controversy about MetS, in section I propose some remarks about medical definitions and their ‘causal import’, and in section I suggest that the different attitudes towards the definition of MetS are relevant to evaluate their explicative power. (shrink)

Cet article examine le rôle joué par la notion d'intelligence dans la poésie de Xénophane et de Parménide. L'auteur soutient que ces deux philosophes, en modifiant les attributs traditionnels du noos humain et divin, répondent aux problèmes posés par le pessimisme gnoséologique de la tradition poétique archaïque, dans laquelle les mortels sont inéluctablement condamnés à l'ignorance. Comme le montre le cas d'Hésiode, même l'inspiration divine ne garantit pas d'acquérir la connaissance, parce que la divinité peut communiquer, à son gré, le (...) vrai ou le faux et que le poète est dépourvu de moyens pour établir la validité de la révélation. Chez Xénophane en revanche, la régularité de l'ordre naturel fondé sur l'immuable noos du dieu offre aux hommes la possibilité effective d'améliorer leur compréhension du monde, tandis que dans le poème de Parménide, la déduction des attributs de l'Être donne aux mortels l'accès à cette vérité qui était auparavant une prérogative exclusive des dieux. (shrink)

Philosophical works on actual causation make wide use of thought experiments. The principal aim of this paper is to show how thought experiments are used in the contemporary debate over actual causation and to discuss their role in relation to formal approaches in terms of causal models. I claim that a recourse to thought experiments is not something old fashioned or superseded by abstract models, but it is useful to interpret abstract models themselves and to use our intuitions to judge (...) the results of the model. Recent research on actual causation has stressed the importance of integrating formal models with some notion of normality; I suggest that thought experiments can be useful in eliciting intuitions where normality is not intended in a statistical sense. The first expository part gives a short presentation of the notion of actual causation, summarising some typical problems of counterfactual approaches and how they are treated in causal and structural models. The second part focuses on the problems of model isomorphism and criticises some radical ideas opposing the role of thought experiments, claiming that they may also be of use in evaluating formal models. (shrink)

Philosophical works on actual causation make wide use of thought experiments. The principal aim of this paper is to show how thought experiments are used in the contemporary debate over actual causation and to discuss their role in relation to formal approaches in terms of causal models. I claim that a recourse to thought experiments is not something old fashioned or superseded by abstract models, but it is useful to interpret abstract models themselves and to use our intuitions to judge (...) the results of the model. Recent research on actual causation has stressed the importance of integrating formal models with some notion of normality; I suggest that thought experiments can be useful in eliciting intuitions where normality is not intended in a statistical sense. The first expository part gives a short presentation of the notion of actual causation, summarising some typical problems of counterfactual approaches and how they are treated in causal and structural models. The second part focuses on the problems of model isomorphism and criticises some radical ideas opposing the role of thought experiments, claiming that they may also be of use in evaluating formal models. (shrink)

Philosophical works on actual causation make wide use of thought experiments. The principal aim of this paper is to show how thought experiments are used in the contemporary debate over actual causation and to discuss their role in relation to formal approaches in terms of causal models. I claim that a recourse to thought experiments is not something old fashioned or superseded by abstract models, but it is useful to interpret abstract models themselves and to use our intuitions to judge (...) the results of the model. Recent research on actual causation has stressed the importance of integrating formal models with some notion of normality; I suggest that thought experiments can be useful in eliciting intuitions where normality is not intended in a statistical sense. The first expository part gives a short presentation of the notion of actual causation, summarising some typical problems of counterfactual approaches and how they are treated in causal and structural models. The second part focuses on the problems of model isomorphism and criticises some radical ideas opposing the role of thought experiments, claiming that they may also be of use in evaluating formal models. (shrink)

In this paper, we will analyse the language used by a group of Tourism ESP students on WhatsApp. The data will be analysed from different perspectives: a) the grammatical mistakes made, and b) the students´ degree of adaptation to the most common linguistic features in text messages. The results indicate that these students continue to make some basic grammatical mistakes they should have already overcome. Moreover, many linguistic features of text messages were encountered in their interventions such as punctuation overuse (...) and deletion and overuse of sounds. Finally, they insert many emojis in their messages to express different meanings. (shrink)

La tâche assignée par Friedrich Schlegel à la faction romantique est d ' achever l ' entreprise transcendantale, entamée avec succès par Fichte dans le domaine de la philosophie, en élargissant notamment au domaine de l ' art le cadre jugé trop étroit de la Doctrine de la Science. Dans la réalisation de cette tâche, Schlegel reste de part en part tributaire du système fichtéen. D ' un côté, il n ' aborde la construction de son esthétique que par le (...) biais d ' une histoire du Beau construite sur une philosophie de l ' histoire dont il trouve le modèle théorique chez Fichte. D ' un autre côté, c ' est sur le modèle de la philosophie transcendantale de Fichte qu ' il développe son concept de poésie transcendantale. Si, pour l ' essentiel, l ' originalité de Schlegel a consisté dans la tentative d ' exporter le modèle transcendantal hors du domaine de la philosophie, la légitimité de son entreprise reste toutefois suspendue à la question du statut d ' une telle exportation. Die von F. Schlegel der « romantischen Faktion » zugeschriebene Aufgabe ist, das von Fichte im Gebiet der Philosophie erfolgreich begonnene transzendentale Unternehmen durch die Erweiterung des ihm zu eng scheinenden Rahmens der Wissenschaftslehre auf das Gebiet der Kunst zu vollenden. Bei der Ausführung dieser Aufgabe bleibt Schlegel durchgängig von Fichte abhängig. Einerseits geht er an den Aufbau seiner Ästhetik nur über eine Geschichte des Schönen heran, die sich auf eine Geschichtsphilosophie gründet, dessen theoretisches Modell er bei Fichte findet. Andererseits entwickelt er seinen Begriff der Transzendentalpoesie nach dem Vorbild von Fichtes Transzendentalphilosophie. Wenn Schlegels Originalität hauptsächlich in dem Versuch besteht, das transzendentale Modell außerhalb des Gebiets der Philosophie zu übertragen, bleibt die Legitimität seines Unternehmens von der Frage nach der Berechtigung einer solchen Übertragung abhängig. (shrink)

In recent years there has been a wealth of literature arguing the need for empirical and interdisciplinary approaches to bioethics, based on the premise that an empirically informed ethical analysis is more grounded, contextually sensitive and therefore more relevant to clinical practice than an ‘abstract’ philosophical analysis. Bioethics has (arguably) always been an interdisciplinary field, and the rise of ‘empirical’ (bio)ethics need not be seen as an attempt to give a new name to the longstanding practice of interdisciplinary collaboration, but (...) can perhaps best be understood as a substantive attempt to engage with the nature of that interdisciplinarity and to articulate the relationship between the many different disciplines (some of them empirical) that contribute to the field. It can also be described as an endeavour to explain how different disciplinary approaches can be integrated to effectively answer normative questions in bioethics, and fundamental to that endeavour is the need to think about how a robust methodology can be articulated that successfully marries apparently divergent epistemological and metaethical perspectives with method. This paper proposes ‘Reflexive Bioethics’ (RB) as a methodology for interdisciplinary and empirical bioethics, which utilizes a method of ‘Reflexive Balancing’ (RBL). RBL has been developed in response to criticisms of various forms of reflective equilibrium, and is built upon a pragmatic characterization of Bioethics and a ‘quasi-moral foundationalism’, which allows RBL to avoid some of the difficulties associated with RE and yet retain the flexible egalitarianism that makes it intuitively appealing to many. (shrink)

This collection of essays sheds new light on the relationship between two of the main drivers of intellectual discourse in ancient Greece: the epic tradition and the Sophists. The contributors show how throughout antiquity the epic tradition proved a flexible instrument to navigate new political, cultural, and philosophical contexts. The Sophists, both in the Classical and the Imperial age, continuously reconfigured the value of epic poetry according to the circumstances: using epic myths allowed the Sophists to present themselves as the (...) heirs of traditional education, but at the same time this tradition was reshaped to encapsulate new questions that were central to the Sophists' intellectual agenda. This volume is structured chronologically, encompassing the ancient world from the Classical Age through the first two centuries AD. The first chapters, on the First Sophistic, discuss pivotal works such as Gorgias' Encomium of Helen and Apology of Palamedes, Alcidamas' Odysseus or Against the Treachery of Palamedes, and Antisthenes' pair of speeches Ajax and Odysseus, as well as a range of passages from Plato and other authors. The volume then moves on to discuss some of the major works of literature from the Second Sophistic dealing with the epic tradition. These include Lucian's Judgement of the Goddesses and Dio Chrysostom's orations 11 and 20, as well as Philostratus' Heroicus and Imagines. (shrink)

First Published in 1999. Routledge is an imprint of Taylor & Francis, an informa company.

ABSTRACT In this paper we set forth what we believe to be a relatively controversial argument, claiming that ‘bioethics’ needs to undergo a fundamental change in the way it is practised. This change, we argue, requires philosophical bioethicists to adopt reflexive practices when applying their analyses in public forums, acknowledging openly that bioethics is an embedded socio‐cultural practice, shaped by the ever‐changing intuitions of individual philosophers, which cannot be viewed as a detached intellectual endeavour. This said, we argue that in (...) order to manage the personal, social and cultural embeddedness of bioethics, philosophical bioethicists should openly acknowledge how their practices are constructed and should, in their writing, explicitly deal with issues of bias and conflict of interest, just as empirical scientists are required to do. (shrink)

Austerity, by its very nature, imposes constraints by limiting the options for action available to us because certain courses of action are too costly or insufficiently cost effective. In the context of healthcare, the constraints imposed by austerity come in various forms; ranging from the availability of certain treatments being reduced or withdrawn completely, to reductions in staffing that mean healthcare professionals must ration the time they make available to each patient. As austerity has taken hold, across the United Kingdom (...) and Europe, it is important to consider the wider effects of the constraints that it imposes in healthcare. Within this paper, we focus specifically on one theorised effect—moral distress. We differentiate between avoidable and unavoidable ethical challenges within healthcare and argue that austerity creates additional avoidable ethical problems that exacerbate clinicians’ moral distress. We suggest that moral resilience is a suitable response to clinician moral distress caused by unavoidable ethical challenges but additional responses are required to address those that are created due to austerity. We encourage clinicians to engage in critical resilience and activism to address problems created by austerity and we highlight the responsibility of institutions to support healthcare professionals in such challenging times. (shrink)

Over the last decade, patient and public involvement (PPI) has become a requisite in applied health research. Some funding bodies demand explicit evidence of PPI, while others have made a commitment to developing PPI in the projects they fund. Despite being commonplace, there remains a dearth of engagement with the ethical and theoretical underpinnings of PPI processes and practices. More specifically, while there is a small (but growing) body of literature examining the effectiveness and impact of PPI, there has been (...) relatively little reflection on whether the concept/practice of PPI is internally coherent. Here, the authors unpick a ‘paradox’ within PPI, which highlights a tension between its moral and pragmatic motivations and its implementation. The authors argue that this ‘professionalisation paradox’ means we need to rethink the practice, and purpose, of PPI in research. (shrink)

In this paper we set forth what we believe to be a relatively controversial argument, claiming that 'bioethics' needs to undergo a fundamental change in the way it is practised. This change, we argue, requires philosophical bioethicists to adopt reflexive practices when applying their analyses in public forums, acknowledging openly that bioethics is an embedded socio-cultural practice, shaped by the ever-changing intuitions of individual philosophers, which cannot be viewed as a detached intellectual endeavour. This said, we argue that in order (...) to manage the personal, social and cultural embeddedness of bioethics, philosophical bioethicists should openly acknowledge how their practices are constructed and should, in their writing, explicitly deal with issues of bias and conflict of interest, just as empirical scientists are required to do. (shrink)

Volume 20, Issue 4, May 2020, Page 80-82.

A total of 1390 university students from five public Moldovan universities completed a survey reporting their experiences and beliefs with respect to 22 types of academic misconduct. An interpretable five-factor solution to the frequencies of these behaviors accounted for more than half of the total variance. The two most reliable predictors were 1) how often students witnessed other students engage in these behaviors, and 2) perceived acceptability of the behaviors. Demographic predictors of these behaviors (gender, academic specialty, year in school, (...) institution, grade average, and scholarship status) predicted minimal variance. Implications and limitations of the findings are discussed. (shrink)

A total of 1390 university students from five public Moldovan universities completed a survey reporting their experiences and beliefs with respect to 22 types of academic misconduct. An interpretable five-factor solution to the frequencies of these behaviors accounted for more than half of the total variance. The two most reliable predictors were 1) how often students witnessed other students engage in these behaviors, and 2) perceived acceptability of the behaviors. Demographic predictors of these behaviors predicted minimal variance. Implications and limitations (...) of the findings are discussed. (shrink)

La Doctrine de la science Nova Methodo est l'oeuvre maitresse de la production fichteenne de l'epoque de Iena. Construite sur les resultats des Principes de la Doctrine de la science, mais allant, aux dires memes de l'auteur, plus loin dans le developpement des principes, elle commande, grace a la deduction de l'intersubjectivite, les parties pratiques du systeme telles que le droit et l'ethique. Loin d'etre un atout mineur, la theorie de l'intersubjectivite est censee constituer la clef de voute de la (...) Doctrine de la science et meme de tout l'idealisme critique: elle a pour fonction d'etablir un pont entre le monde intelligible et le monde sensible, de depasser le dualisme kantien des phenomenes et des noumenes, et d'achever le systeme dont Kant aurait seulement jete les bases. (shrink)

Reflective function is defined as an individual’s ability to understand human behavior in terms of underlying mental states including thoughts, feelings, desires, beliefs, and intentions. More specifically, the capacity of parents to keep their child’s mental states in mind is referred to as parental RF. RF has been linked to adult mental health and parental RF to children’s mental health and development. The gold standard measure of RF is the interview-based Reflective Functioning Scale applied to the Parent Development Interview or (...) Adult Attachment Interview, which while well validated, is time-and labor-intensive to administer. Given the increasing need for reliable, valid, and rapid RF assessment in wide-ranging settings, two alternative measures were considered including the Reflective Function Questionnaire and Parental Reflective Function Questionnaire. We determined the convergent validity of these measures in comparison with the PDI-rated RFS. A sample of mothers and fathers was drawn from a sub-study of the ongoing Alberta Pregnancy Outcomes and Nutrition longitudinal cohort when their children were 42–60 months of age. Pearson correlations and multiple linear regression was conducted, followed by splitting the sample to compute Cohen’s kappas measures of agreement. Two subscales of the PRFQ correlated significantly with the gold standard PDI-rated RFS, providing evidence for convergent validity. As a brief multidimensional measure of parental RF, the PRFQ offers an alternative for measurement of RF in large-scale studies of parental development and child health. (shrink)

BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis of (...) a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)