This paper explores how transformative experience generates decision-making problems of particular seriousness in medical settings. Potentially transformative experiences are especially likely to be encountered in medicine, and the associated decisions are confronted jointly by patients and clinicians in the context of an imbalance of power and expertise. However in such scenarios the principle of informed consent, which plays a central role in guiding clinicians, is unequal to the task. We detail how the principle’s assumptions about autonomy, rationality and information handle (...) transformative experiences poorly, appealing to several difficult cases for medical decision-making to illustrate the resulting problem, and we consider how the existing literature on complications with consent fails to offer a resolution. We argue that recognition of the problem has a role to play in achieving a more effective response to transformative decisions. In Sect. 1 we introduce several representative cases of challenging patient decision-making that clinicians might face. In Sect. 2 we detail how transformative experience has been analysed in the recent literature, before outlining in Sect. 3 the theoretical basis of the principle of informed consent, which plays a central role in how clinicians are expected to support decision-making. In Sect. 4, having laid the groundwork for a clear description, we return to the cases given in Sect. 1 to confirm how their transformative nature presents a problem: either clinicians treat the decisions faced by these patients as ‘normal’, encouraging them to focus on information provision that patients may be unable to act on, or they treat them as transformative, in which case they lack the resources to recognise whether they are helping patients make (subjectively) good decisions. In Sect. 5 we argue that the existing literature does not offer any escape from this problem. We close in Sect. 6 by noting the significant impact that appreciating the problem of transformative experience could have on supporting transformative decisions in medicine and briefly suggesting how we might aim to develop new approaches to dealing with these. (shrink)

In the article, the recent social-philosophical discussions on authenticity and autonomy have been reviewed through the optics of power. The latter is understood as the regulation of the actors’ state of being marked or unmarked in the social-cultural space. Another dimension of the optics is the adjustment of the access to power and representation of the groups in media-related and legal discourses. The visibility asymmetry has been considered through the social representation of the groups, with attention paid to the concepts (...) of recognition, exoticization and adaptation, power, and powerlessness. The immediate and terminated effect of visibility on social cohesion and integration processes in communities has been reviewed in this context. The distortions of visibility, such as invisibility and super-visibility, require estimation of the unmarked normalcy threshold for the communities; therefore, the Ukrainian perspective on the issue involved the analysis of the conflict-related massive protracted inner displacement in the country. Based on the situation descriptions and action plans suggested in the project on the Strategy of Integration of Internally Displaced Persons and Implementation of Long-Term Solutions to Internal Displacement until 2023, the distortions of visibility in the Ukrainian communities have been assessed. One of the suggested perspectives implies the possible impact evaluation of media-type visibility of the internally displaced persons and residents of the non-government-controlled areas in Ukraine on the scenarios of reintegration of the territories temporarily occupied by the Russian Federation and Russia-backed forces. The theoretical adjustment lies in finding the visibility theory gap and formulation of the further research question on the correlation between the group visibility and reconciliation being facilitated by the actors. (shrink)