Patientenselbstbestimmung und Patientenverfügungen haben zunehmende Bedeutung und Beachtung erfahren. In der vorliegenden qualitativen Studie wurden 15 Patientinnen und Patienten mit amyotropher Lateralsklerose —einer unheilbaren, chronisch-degenerativen Erkrankung mit vorhersehbarer Symptomatik—interviewt, um zu erfahren, welche Werte und Kriterien sie bei prospektiven Entscheidungen am Lebensende und bei der Abfassung von PV zugrunde legen. Die Auswertung erfolgte nach der Methode der „grounded theory“. Die befragten Patientinnen und Patienten befürworteten einen Verzicht auf lebenserhaltende Behandlungen, wenn sie keine hinreichenden Lebensmöglichkeiten mehr sahen, d. h. wenn sie (...) die aktuelle Lebensqualität für unzureichend erachteten und die Chance auf Besserung als gering einschätzten. Dem Patientenwillen sprachen sie bei der Entscheidungsfindung ein Vetorecht zu. Patientenverfügungen fassten sie erst ab, als sie keine Hoffnung mehr auf Besserung ihrer Erkrankung hatten. Sie verstanden diese als Instrumente zur vorsorglichen Erklärung ihres Wunsches, auf lebensverlängernde Maßnahmen zu verzichten, wenn die LM inakzeptabel geworden sind. Damit wollten sie sich gegenüber dem Arzt absichern, den sie in der Rolle eines Anwalts des Lebens sahen und mit dem sie daher ihre Behandlungswünsche nicht besprochen haben. Trotz vorhersehbarer Symptomatik legten sie in ihren PV keine spezifischen Behandlungswünsche nieder, sondern verwendeten allgemeine Formularmuster ohne konkreten Bezug zu ihrer Erkrankung. Daher bestehen auch bei dieser Patientengruppe Zweifel, ob die PV in einer konkreten Behandlungssituation hilfreich sind. (shrink)

Patientenselbstbestimmung und Patientenverfügungen (PV) haben zunehmende Bedeutung und Beachtung erfahren. In der vorliegenden qualitativen Studie wurden 15 Patientinnen und Patienten mit amyotropher Lateralsklerose (ALS)—einer unheilbaren, chronisch-degenerativen Erkrankung mit vorhersehbarer Symptomatik—interviewt, um zu erfahren, welche Werte und Kriterien sie bei prospektiven Entscheidungen am Lebensende und bei der Abfassung von PV zugrunde legen. Die Auswertung erfolgte nach der Methode der „grounded theory“. Die befragten Patientinnen und Patienten befürworteten einen Verzicht auf lebenserhaltende Behandlungen, wenn sie keine hinreichenden Lebensmöglichkeiten (LM) mehr sahen, d. h. (...) wenn sie die aktuelle Lebensqualität für unzureichend erachteten und die Chance auf Besserung als gering einschätzten. Dem Patientenwillen sprachen sie bei der Entscheidungsfindung ein Vetorecht zu. Patientenverfügungen fassten sie erst ab, als sie keine Hoffnung mehr auf Besserung ihrer Erkrankung hatten. Sie verstanden diese als Instrumente zur vorsorglichen Erklärung ihres Wunsches, auf lebensverlängernde Maßnahmen zu verzichten, wenn die LM inakzeptabel geworden sind. Damit wollten sie sich gegenüber dem Arzt absichern, den sie in der Rolle eines Anwalts des Lebens sahen und mit dem sie daher ihre Behandlungswünsche nicht besprochen haben. Trotz vorhersehbarer Symptomatik legten sie in ihren PV keine spezifischen Behandlungswünsche nieder, sondern verwendeten allgemeine Formularmuster ohne konkreten Bezug zu ihrer Erkrankung. Daher bestehen auch bei dieser Patientengruppe Zweifel, ob die PV in einer konkreten Behandlungssituation hilfreich sind. (shrink)

ZusammenfassungEntscheidungen am Lebensende sind Bestandteil der ärztlichen Tätigkeit. In dieser Studie wurden Berliner Medizinstudierende zu ihren Kenntnissen der rechtlichen Grundlagen und ihrer ethischen Bewertung von passiver und aktiver Sterbehilfe befragt. Im Wintersemester 2002/2003 wurde eine schriftliche Befragung zu ethischen und rechtlichen Aspekten der Sterbehilfe unter den Teilnehmenden eines Pflichtkurses für Medizinstudierende im fünften Studienjahr an der Charité, Universitätsmedizin Berlin durchgeführt. Gruppenunterschiede im Antwortverhalten wurden mit dem χ2-Test nach Pearson geprüft. Von 102 Studierenden beantworteten 85 den Fragebogen (Rücklaufquote = 82,5%). Es (...) wussten 46 Medizinstudierende (54,1%), dass die Therapiebegrenzung am Lebensende legal sein kann; 70 (82,3%) hielten dies für ethisch akzeptabel. Die Tötung auf Verlangen in bestimmten Situationen hielten 35 Studierende (41,2%) für ethisch akzeptabel; 28 (33,0%) befürworteten die Legalisierung der Tötung auf Verlangen in bestimmten Situationen. Im Vergleich zu Ärztinnen und Ärzten in Deutschland wurde die Tötung auf Verlangen von weniger Studierenden abgelehnt. Angesichts der bestehenden Unsicherheiten bei den Studierenden hinsichtlich der rechtlichen und ethischen Bewertung von Entscheidungen am Lebensende sollten diese Aspekte in der medizinischen Ausbildung stärker berücksichtigt werden. (shrink)

One of the most widely acknowledged Filipino cultural values is utang na loob. Sometimes translated as “debt of gratitude,” it refers to an informal form of reciprocal social obligation that arises when a person is significantly assisted by another during a difficult time. As it touches on the Filipino sense of human dignity and social responsibility, utang na loob is one critical theme in most research investigating the characteristics of the Filipino psyche, culture, and social behavior. Explaining the nature and (...) occurrence of utang na loob, however, has its challenges, foremost of which is how to appropriately account for its negative or morally problematic instantiations. This essay examines how some approaches that regard utang na loob as a moral virtue handle this challenge. After identifying several difficulties with these approaches, the essay argues for an alternative approach that maintains the status of utang na loob as a cultural value whose instantiating actions are subject to moral evaluation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Subjective Experiences of Tourette SyndromeBeyond the Premonitory UrgeThe authors report no conflicts of interest.There is an evolving recognition in healthcare that the patient's subjective experience needs to be privileged both in understanding clinical phenomena and also ensuring the salience of outcomes used to evaluate the impact of treatment interventions. This is reflected in the expansion of patient-reported outcome measures to capture a person's perception of their own health, and (...) the increasing requirement of involving people with lived experience in the co-design of research studies (National Health and Medical Research Council, 2016) and care improvement initiatives. In mental health it has been long understood that observable behavioral phenomena can only partially inform clinical understanding of the experience of the patient living with the condition. However, capturing the patient's subjective experience faithfully remains a challenge.Tourette syndrome (TS) is a complex condition in which there are clearly observable behavioral phenomena (vocal and motor tics, compulsive and socially inappropriate behaviors), but also a broad and varied range of subjective phenomena reported by different individuals. These may include sensory phenomena such as the premonitory sensory urge preceding a tic, compulsions to touch things a certain number of times or do something repeatedly until it feels "just right," or bothersome intrusive thoughts or images. To further complicate the picture most patients with TS have one or more co-occurring conditions such as attention deficit hyperactivity disorder, obsessive-compulsive disorder, and anxiety, which may actually cause a greater burden of dysfunction and distress than the Tourette symptoms.In their paper, Curtis-Wendlandt et al. (2024) challenge the dependence of current psychiatric diagnostic criteria (e.g., the Diagnostic and Statistical Manual of Mental Disorders, 5th edition) on observable tics, and propose a broader and more dimensional approach to nosology which incorporates sensory, cognitive and affective phenomena. [End Page 47] Data from interviews they conducted identified that premonitory phenomena and urge experiences in tic disorders are more complex and diverse than what is currently reflected in the literature and clinical scales. They also interviewed participants who reported "no urges" or "no premonitory sensations." They commented that the literature generally treats reports of urge absences at face value, and does not address the likelihood that such reports may be ambiguous or problematic. Overall, they concluded that their research suggests that premonitory urges in TS are a complex and diverse phenomenon that requires further study. This reflects with our clinical experience in working with TS patients. Although a large proportion of older patients describe sensory-based premonitory urges, descriptions are not homogenous, with many describing other experiences preceding their tics.When evaluating a patient's response to an intervention (either behavioral or pharmacological) clinicians incorporate a range of information. This includes the severity of their tics (number, type, frequency, intensity, and associated impairment), as well as their mood, participation and performance in study, work, and social activities, and overall quality of life. Standard clinical practice would not typically include assessment of some of the subjective experiences which precede tics. If it was accepted that these subjective phenomena are indeed salient to the patient's well-being, then a challenge would be how to consistently and reliably capture these feelings to operationalize a comprehensive patient-centered assessment.The primary evidence-based treatment for tic disorders, comprehensive behavioral intervention for tics (CBIT), involves training to increase the awareness of premonitory urges (Woods et al., 2008). Furthermore, successful 'blocking' of tics during the course of CBIT requires the patient to be aware of premonitory urges. Clinicians having a better understanding of the complexity and diversity of experiences which precede tics, as well as using open-ended questioning styles, may assist with improving CBIT outcomes. [End Page 48]Related ArticlesFeature Article: Dimensions, Not Types: On the Phenomenology of Premonitory Urges in Tourette SyndromeCommentary: Priming and Narrative Habits in the Phenomenological Interview: Reflections on a Study of Tourette SyndromeCommentary: Subjective Experiences of Tourette Syndrome: Beyond the Premonitory UrgeResponse: Phenomenological Interviews and Tourette’sDaryl EfronThe Royal Children's Hospital MelbourneIvan MathiesonThe Laneway ClinicDaryl Efron Daryl Efron is a Consultant Pediatrician, Royal Children's Hospital Senior Research Fellow, Murdoch... (shrink)

This paper aims to pay tribute to Figal’s comprehensive and innovative analysis of the artwork and beauty, while challenging both his realist position on the immediacy of meaning and his monist stance that reduces sublimity to beauty. To enquire into the origin of aesthetic feelings and sense, and thus, to break the hermeneutic circle, we first trace the origin of this reduction to the reception of Burke’s concept of the sublime by Mendelssohn and Kant. We then recur to Husserl and (...) Dufrenne to trace the origin of the sense of the feeling of sublimity in the realm of affectivity or sensuousness. This genesis takes place in passive experience, where we identify an excess of sensuous sense over categorial meaning that is constitutive of the affective sense that our bodily sensations give to hyletic material. It is argued that this sensuous excess evokes a sublime experience in the phenomenological sense, involving an affective and disruptive bodily experience and an endless process of sense formation. Affective or sensuous sense is thus an event that irreversibly affects the bodily surface. To elucidate this phenomenon, we draw on the theoretical framework of Breton and Bataille, positing it as a form-transgressive ‘convulsive’ sublime, which we then illustrate in the architectural works of Tschumi and Eisenman. In short, we have retrieved the origin of aesthetic experience and redefined the feeling of the sublime as a phenomenological ‘convulsive’ sublimity. (shrink)

Nicole Shukin pursues a resolutely materialist engagement with the "question of the animal," challenging the philosophical idealism that has dogged the question by tracing how the politics of capital and of animal life impinge on one ...

As a young person with narcolepsy, the author chronicles some of the challenges and hopes of being in the workforce. These journal entries center around the issues created by excessive daytime sleepiness and the experiences that drive the narrator to become self-employed.

« Rites » sont d'abord de séquences d'actions corporelles définies socialement plus ou moins strictement. Très souvent, mais pas toujours les sociétés attendent qu'aux actes extérieurs correspondent des motivations, des croyances et des émotions intérieures ou « psychiques ». Il ya des sociétés où l'efficacité supposée des rites dépend de la correspondance entre mouvements corporels et «réalité » intérieure. Mais il y en a d'autres où ce qui compte c'est uniquement l'exécution minutieuse des gestes corporels en tant que tels. De (...) toute façon, des actions rituelles ne sauraient être interprétées comme suivant exclusivement un calcul rationnel, bien qu'un observateur sociologique pourrait constater une fonction objectivement positive d'un rite sur le plan social ou psychique sans qu'il y ait une relation causale sur le plan physique. C'est surtout dans le cas des rites de deuil où on observe que des actions objectivement ineffectives, donc symboliques, « répondent » à une situation qui ne peut être altérée sur le plan « réel », mais qui aident à supporter l'insupportable. On constate quand même la possibilité que ce qui n'était d'abord qu'un mouvement extérieur s'imprègne de valeurs symboliques, comme si par exemple une douleur rituellement infligée devient le symbôle de l'appartenance à un groupe social. Les rites sont donc l'incarnation du social dans les corps des sujets. Ils s'y inscrivent. Surtout dans les grandes civilisations les rites deviennent un système administré par des spécialistes, qui développent un « code élaboré » qui n'est déchiffrable que par les experts. L'article montre qu'il ya une certaine opposition entre contrôle rituel et moral de comportements humains."Rites" are first sequences bodily actions socially defined more or less strictly. Very often, but not always expect companies as external acts are the motivations, beliefs and inner emotions or "psychic". There are societies where the supposed efficacy of rites depends on the correspondence between body movements and "reality" inside. But there are others where what counts is only the meticulous execution of bodily gestures as such. Anyway, ritual actions can not be interpreted exclusively as following a rational calculation, although a sociological observer could see a positive function objectively a rite of social or psychic without a causal relationship to the physical plane. It is especially in the case of mourning rites which we observe that actions objectively ineffective, so symbolic, "respond" to a situation that can not be altered on the "real", but help to bear the unbearable. There is still the possibility that what was at first a movement outside soaks symbolic values, such as if ritually inflicted pain becomes the symbol of belonging to a social group. The rites are the incarnation of social issues in the body. They enroll. Especially in the great civilizations rituals are a system administered by specialists who develop "elaborated code" that is decipherable only by experts. The article shows that there is a tension between moral and ritual control of human behavior. (shrink)

This commentary draws out themes from the narrative symposium on “living with the label “disability”” from the perspective of auto/biography and critical disability studies in the humanities. It notes the disconnect between the experiences discussed in the stories and the preoccupations of bioethicists. Referencing Rosemarie Garland-Thompson’s recent work, it suggests that life stories by people usually described as “disabled” offer narrative, epistemic and ethical resources for bioethics. The commentary suggests that the symposium offers valuable conceptual tools and critiques of taken-for-granted (...) terms like “dependency”. It notes that these narrators do not un–problematically embrace the term “disability”, but emphasize the need to redefine, strategically deploy or reject this term. Some accounts are explicitly critical of medical practitioners while others redefine health and wellbeing, emphasizing the need for reciprocity and respect for the knowledge of people with disability, including knowledge from their experience of “the variant body” (Leach Scully, 2008). (shrink)

The rise of a partisan Congress can aggravate some of the pathologies of the rhetorical presidency identified by Jeffrey Tulis: reckless policy production, and the resulting public disillusionment with an overpromising government. In some cases, such as the debate over the invasion of Iraq, the unified ranks of the president’s party amplify the president’s simplistic rhetoric, reducing policy deliberation and aggravating public disappointment when reality turns out to be more complex. When combined with divided government, however, partisanship can work to (...) produce deliberative compromises that mitigate these pathologies, as exemplified by the welfare‐reform legislation enacted by a Republican Congress under a Democratic president in 1996. (shrink)

Le mot symétrie signifie « avec mesure » et implique une idée d’harmonie, d’équilibre. Au cours des siècles, les définitions de la symétrie ont évolué, dans les arts comme dans la science. Alors que la véritable symétrie n’existe pas dans la nature, Jacques Nicolle se propose d’expliquer ici comment s’est imposée à nous la notion de symétrie.

Vers 1360, la carrière de Nicole Oresme connut un tournant capital, largement ignoré jusqu'à présent : après plus de vingt-cinq ans en Faculté des arts, il se fit théologien. Se munissant d'un doctorat de théologie, il accomplit les étapes successives du cursus. Il faut s'en surprendre : la cohérence de son parcours de philosophe de la nature aurait pu le conduire aux mêmes choix que Jean Buridan qui s'était lui-même refusé l'accès aux Facultés supérieures et était demeuré à la (...) Faculté des arts de Paris. Ce tournant se manifeste dans un manuscrit, unique le Vat. Lat. 986, épais dossier issu, d'une circonstance universitaire précise, la résompte d'Oresme. Une introduction détaillée en donne la composition. Dans ce manuscrit, Alain Boureau pense avoir découvert le texte de dix longues questions sur les Sentences, inédites et même inconnues, dont la transcription et la traduction constituent les deux premiers tomes de cette série. (shrink)

How medical education and practice can move beyond a narrow focus on biological intervention to recognize the lived experiences of illness, suffering, and death. In Afflicted, Nicole Piemonte examines the preoccupation in medicine with cure over care, arguing that the traditional focus on biological intervention keeps medicine from addressing the complex realities of patient suffering. Although many have pointed to the lack of compassion and empathy in medical practice, few have considered the deeper philosophical, psychological, and ontological reasons for (...) it. Piemonte fills that gap, examining why it is that clinicians and medical trainees largely evade issues of vulnerability and mortality and, doing so, offer patients compromised care. She argues that contemporary medical pedagogy and epistemology are not only shaped by the human tendency to flee from the reality of death and suffering but also perpetuate it. The root of the problem, she writes, is the educational and institutional culture that promotes reductionist understandings of care, illness, and suffering but avoids any authentic confrontation with human suffering and the fear and self-doubt that can come with that confrontation. Through a philosophical analysis of the patient-practitioner encounter, Piemonte argues that the doctor, in escaping from authentic engagement with a patient who is suffering, in fact “escapes from herself.” Piemonte explores the epistemology and pedagogy of medicine, examines its focus on calculative or technical thinking, and considers how “clinical detachment” diminishes physicians. She suggests ways that educators might cultivate the capacity for authentic patient care and proposes specific curricular changes to help students expand their moral imaginations. (shrink)

»Freiheit« findet als politisch-rechtliche Leitidee der Moderne weitreichende Zustimmung. Bei näherem Hinsehen zeigen sich gleichwohl höchst unterschiedliche Deutungen und Akzentuierungen. Darüber hinaus ist der Freiheitsbegriff semantischen Umkehrungen ausgesetzt, die sogar darauf hinauslaufen können, faktische Unfreiheit als höchste Freiheit auszugeben. Die interdisziplinären Beiträge sprechen sich für ein anspruchsvolles Freiheitsverständnis aus und legen ihr Augenmerk nicht zuletzt auf die relationale Dimension von Freiheitspraxen.

A travers l'ensemble des écrits de Pierre Teilhard de Chardin, Nicole Timbal dresse le portrait-souvenir de celui qui a été pour elle un initiateur, un guide, un compagnon spirituel. Une valse à quatre temps qui nous fait découvrir successivement un Teilhard "baptisé dans le réel " au contact de la Grande Guerre, un jésuite qui manifeste son désir de faire passer "son évangile " dans le monde en dénonçant les frilosités de l'Eglise d'alors, un visionnaire affirmant sa fidélité rénovatrice (...) aux fondamentaux de la foi chrétienne et un prêtre pieux, fervent et d'un charisme exceptionnel. Voici une approche simple et pleine de chaleur des points essentiels de la pensée teilhardienne concentrés dans un livre accessible et propre à toucher un public hésitant à le découvrir. Cette promenade méditative à travers les textes de Teilhard démontre quelle puissance de vie son oeuvre recèle aujourd'hui encore. (shrink)

Hermeneutical injustice, as a species of epistemic injustice, is when members of marginalized groups are unable to make their experiences communicatively intelligible due to a deficiency in collective hermeneutical resources, where this deficiency is traditionally interpreted as a lack of concepts. Against this understanding, this paper argues that even if adequate concepts that describe marginalized groups’ experiences are available within the collective hermeneutical resources, hermeneutical injustice can persist. This paper offers an analysis of how this can happen by introducing the (...) notion of hermeneutical excess: the introduction of additional concepts into collective hermeneutical resources that function to obscure agents’ understanding of the lived experiences of marginalized groups. The injustice of hermeneutical excesses happens not due to hermeneutical marginalization (the exclusion of members of marginalized groups from the construction of hermeneutical resources), but rather hermeneutical domination: when members of dominant groups have been inappropriately included in the construction of hermeneutical resources. By taking as exemplary cases the concepts of “reverse racism” and “non-consensual sex” this paper shows how such excesses are introduced as a kind of defensive strategy used by dominant ideologies precisely when progress with social justice is made. (shrink)

Researchers seeking to engage in projects related to Tribal communities and their citizens, lands, and non-human relatives are responsible for understanding and abiding by each Tribal nation’s research laws and review processes. Few studies, however, have described the many diverse forms of Tribal research review systems across the United States (US). This study provides one of the most comprehensive examinations of research review processes administered by Tribal Research Review Boards (TRRBs) in the US. Through a systematic analysis, we consider TRRBs’ (...) online presence, online documentation, and themes across documents, for five entity types: Tribal nations and Tribal consortiums, Tribal colleges and universities, Tribal health organizations, Indian Health Services, and other Tribal organizations. Results include an assessment of online presence for 98 potential TRRBs, identification of 118 publicly available online documents, and analysis of 41 themes across four document types: Tribal research codes and TRRBs’ guidelines, applications, and post-approval documents. Altogether, this research provides a macro-level analysis of the most common types of TRRBs in the US in an effort to increase researchers’ understanding of these important processes as they prepare to ethically engage Tribal communities in research. These results aim to empower Tribal decision makers as they align their TRRBs’ online visibility and documentation with community priorities and strengthen their protections for the rights and wellbeing of their citizens and community. Ultimately, by expanding our knowledge of TRRBs across the US, this contribution seeks to uphold Tribal sovereignty in research and promote ethical approaches to research with Indigenous communities. (shrink)

Where should computer simulations be located on the ‘usual methodological map’ which distinguishes experiment from theory? Specifically, do simulations ultimately qualify as experiments or as thought experiments? Ever since Galison raised that question, a passionate debate has developed, pushing many issues to the forefront of discussions concerning the epistemology and methodology of computer simulation. This review article illuminates the positions in that debate, evaluates the discourse and gives an outlook on questions that have not yet been addressed.

Deliberative democracy is an embattled political project. It is accused of political naiveté for it only talks about power without taking power. Others, meanwhile, take issue with deliberative democracy’s dominance in the field of democratic theory and practice. An industry of consultants, facilitators, and experts of deliberative forums has grown over the past decades, suggesting that the field has benefited from a broken political system. This book is inspired by these accusations. It argues that deliberative democracy’s tense relationship with power (...) is not a pathology but constitutive of deliberative practice. Deliberative democracy gains relevance when it navigates complex relations of power in modern societies, learns from its mistakes, remains epistemically humble but not politically meek. These arguments are situated in three facets of deliberative democracy—norms, forums, and systems—and concludes by applying these ideas to three of the most pressing issues in contemporary times—post-truth politics, populism, and illiberalism. (shrink)

The face of the world is changing. The past century has seen the incredible growth of international institutions. How does the fact that the world is becoming more interconnected change institutions' duties to people beyond borders? Does globalization alone engender any ethical obligations? In Globalization and Global Justice, Nicole Hassoun addresses these questions and advances a new argument for the conclusion that there are significant obligations to the global poor. First, she argues that there are many coercive international institutions (...) and that these institutions must provide the means for their subjects to avoid severe poverty. Hassoun then considers the case for aid and trade, and concludes with a new proposal for fair trade in pharmaceuticals and biotechnology. Globalization and Global Justice will appeal to readers in philosophy, politics, economics and public policy. (shrink)

In response to growing concerns of bias, discrimination, and unfairness perpetuated by algorithmic systems, the datasets used to train and evaluate machine learning models have come under increased scrutiny. Many of these examinations have focused on the contents of machine learning datasets, finding glaring underrepresentation of minoritized groups. In contrast, relatively little work has been done to examine the norms, values, and assumptions embedded in these datasets. In this work, we conceptualize machine learning datasets as a type of informational infrastructure, (...) and motivate a genealogy as method in examining the histories and modes of constitution at play in their creation. We present a critical history of ImageNet as an exemplar, utilizing critical discourse analysis of major texts around ImageNet’s creation and impact. We find that assumptions around ImageNet and other large computer vision datasets more generally rely on three themes: the aggregation and accumulation of more data, the computational construction of meaning, and making certain types of data labor invisible. By tracing the discourses that surround this influential benchmark, we contribute to the ongoing development of the standards and norms around data development in machine learning and artificial intelligence research. (shrink)

In the context of recent populist rhetoric’s use of metaphors as a form of hate speech that inspires violence, Wolves at the Door: Migration, Dehumanization, Rewilding the World shows how the wolf...