The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right of free choice entail (...) allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (shrink)

I show how much psychiatric disability is informed by trauma, marginalization, sexist norms, social inequalities, concepts of irrationality and normalcy, oppositional mind-body dualism, and mainstream moral values. Drawing on feminist discussion of physical disability, I present a feminist theory of psychiatric disability that serves to liberate not only those who are psychiatrically disabled but also the mind and moral consciousness restricted in their ranges of rational possibilities.

Argues that philosophy can solve the midlife crisis, at least in one of its forms. This crisis turns on the exhaustibility of our ends. The solution is to value ends that are ‘atelic,’ so inexhaustible. Topics include: John Stuart Mill's nervous breakdown; Aristotle on the finality of the highest good; and Schopenhauer on the futility of desire.

The reemergence of the question of suicide in the medical context of physician-assisted suicide seems to me one of the most interesting and fertile facets of late modernity. Aside from the disruption which this issue may cause in the traditional juridical relationship between individuals and the state, it may also help to transform the dominant conception of subjectivity that has been erected upon modernity's medicalized order of death. To enhance this disruptive potential, I am going to examine the perspectives on (...) death offered by two contemporary writers: Zygmunt Bauman and Jean Baudrillard. Each of these writers recognizes the centrality of death to modern culture, as Heidegger did, but they also go beyond him in specifying the ways in which death maintains a presence in late modernity, despite efforts to conceal it. In particular, both of these writers recognize the important role that medicine has played in ordering the modern conception of death. After situating these two perspectives in relation to each other, and in relation to Heidegger, who will serve here as a sort of benchmark, I will return to the issue of suicide. Given the differences in their readings of the role that death and medicine play in modern culture, these post-Heideggerians take strikingly different positions on this issue. By engaging these perspectives, I intend not only to point out the tremendous potential which this issue holds for a fundamental rethinking of modern subjectivity, but also reveal some of the dangers that may beset any naive optimism about the right to die. (shrink)

Ownership of the body, its organs, tissues, marrow, fluids, secretions, and other component parts and products must always be contested, for what appears to belong to the individual may instead be turned into property at the expense of the individual and to the benefit of the social collectivity. Legal discourse relies upon and supports scientific discourse. Both are the product and the producer of utilitarian commercial interests. Collectively, they displace the individual self with a ‘body’ of social interest, encouraging entrepreneurship (...) over the interests of the individual, and quieting social and philosophical discussions concerning self and its location. (shrink)

Philosophers, theologians, physicists, and psychologists join their efforts to reflect on the crucial issues of limit and infinity, time and eternity, empty space and material space. The volume offers an invaluable contribution to some of the most important issues of our times: questions on God and consciousness are discussed in parallel with quantum theory, black holes, the inflationary universe, the Big Bang, and string theory, from different perspectives and angles, ranging from neuroscience to AI.

Since at least the 1960s, science and technology studies scholars have distinguished between technological and social fixes. The author introduces a new concept for the STS theoretical tool kit—the cultural fix—and illustrates this concept using examples from her own research on pregnancy loss and neonatal intensive care, as well as that of anthropologists Katherine Newman and Sherry Ortner on downward mobility and unemployment in the United States. It is argued that the cultural fix represents a distinctive anthropological contribution to the (...) field. (shrink)

Death is frequently seen as the ultimate manifestation of materiality. Without denying this materiality, this article will investigate the discursive character of death and its contingent nature, through the lens of Laclau and Mouffe's [. Hegemony and social strategy: Towards a radical democratic politics. London: Verso] discourse theory. First, the core elements of the discourse of death, such as end/cessation/termination, negativity, irreversibility, inescapability, and undesirability, in combination with life as death's constitutive outside, will be analysed, showing the specificity of this (...) discourse of death. The contingency of death is argued further from a more genealogical stance, through the changes over time in the articulation of death and good death. Finally, the political nature of the discourse of death is illustrated by an analysis of end-of-life debates and the struggle between the hospice and the right-to-die social movements over the exact articulation of a good death. The article concludes by pointing to the necessary and constitutive failure of discourse to capture the materiality of death. (shrink)

Throughout the development of an "ethic of care" different from an "ethic of justice," the relationship between the two has been problematic. Are they theories between which one must choose? Are they complementary? Are they domain-specific? In support of my view that neither is adequate by itself, I here examine the private domain of care of the dying by intimates, and find there important issues both of care and of justice.

Jeffrey Olick is one of the most prominent researchers in the field of memory studies today. Yet, none of his works have been translated into Russian. “Figurations of memory” is one of his most important texts. It is dedicated to the process-relational methodology. J. Olick criticizes traditional approaches to collective memory as a static thing, whereas it should be studied as a process. On the other hand, the author criticizes a mainstream understanding of memory as a unified object. Instead, he (...) suggests that there are multiple mnemonic forms and practices that should be investigated. As a result he presents a new methodology that is based on analysis of the four essential aspects of memory work: field, medium, genre, and profile. This method of analysis leads to emergence of additional empirical categories, such as official, vernacular, public, and private memory; affective, aesthetic-expressive, instrumental-cognitive, and political-moral media; the normal legitimation, German traditions, German victimhood, and German guilt genres; and the reliable, moral, and normal profiles. Though the final model may seem rather complex, the author claims that it is clearer and more precise that other models of research of collective memory. He claims that this methodology is universal for studying a large number of sociological topics. (shrink)

This paper explores the gendered nature of the formal will-making process. Longer female life expectancy means that women often make the final decision regarding the disposal of relational assets. Inheritance is thus identified as a rare opportunity for them to enjoy power and control over family wealth. There are, however, questions as to whether that enjoyment may be inhibited by the presence of men. Drawing on a series of interviews conducted with professional legal practitioners this paper discusses how, when couples (...) seek will-making advice together, that process is largely dominated and driven by women. It argues that this situation is primarily attributable to a combination of the multi-faceted nature of will-making and, crucially, women’s position and role within the family. Having identified the possibilities available to women to exercise power and authority over men in this context, the paper concludes with a brief consideration of the potential implications for both practitioners and policy-makers. (shrink)

In the mid-19 th century, increases in global migration and mobility produced a discernable rise in the number of ambiguous absences. This shift, combined with a novel expectation, linked to improved communications technology, that such absences might be resolved engendered the emergence of missing persons as a social category. A demand on the part of families of the missing that the state aid in their location would produce a Bourdieusian classification struggle over how to define and categorize this new mass (...) of absences. At issue would be whether an ambiguously absent individual was merely absent, as a routine component of social life, or whether the individual merited legitimation by the state as a new form of deviant: a "missing" person. Scholars have described the emerging administrative state’s enhanced powers of surveillance and classification and its persistent inclination to render their populations, in James Scott’s phrase, “legible.” Brought to the attention of the state, missing persons represented a body of people who had conspicuously fallen out of official sight. Yet, instead of attempting to fix this omission by gathering additional information on the lost — to, in effect, see the missing — as theories of the state would lead us to expect, the state chose to look away. In the United States, the state, in the form of municipal police departments, resisted classifying absences as cases of missingness and pushed back against families’ requests for aid. Leveraging the inherently ambiguous characteristics of the missing, the state promoted a definition of missing persons that conveniently freed it from the burden of managing an unmanageable population. In this article, drawing from archival data, I challenge prevailing theories of the modern state that emphasize its avidly classificatory nature by offering a case in which legibility was strategically withheld and a population was, in service of state interests, intentionally obscured. Only after the state lost its symbolic monopoly and the category was raced and gendered, becoming, in public discourse, associated with a socially valuable demographic – namely, young, white women – would the state, facing a threat to its legitimacy, deem the missing as worthy of being seen. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence (...) of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

Medicalization has been a process articulated primarily by social scientists, historians, and cultural critics. Comparatively little is written about the role of bioethics in appraising medicalization as a social process. The authors consider what medicalization means, its definition, functions, and criteria for assessment. A series of brief case sketches illustrate how bioethics can contribute to the analysis and public policy discussion of medicalization.

Scientists, bioethicists, and policy makers are currently engaged in a contentious debate about the scientific prospects and morality of efforts to increase human longevity. Some demographers and geneticists suggest that there is little reason to think that it will be possible to significantly extend the human lifespan. Other biodemographers and geneticists argue that there might well be increases in both life expectancy and lifespan. Bioethicists and policy makers are currently addressing many of the ethical, social, and economic issues raised by (...) life extension research. However, the emphasis on philosophical argument supporting or condemning efforts to increase human longevity means that much less attention is currently being given to the factors that might play a role in generating interest in efforts to increase human longevity. This analysis considers three factors that might play a role in heightening public interest in efforts to develop biomedical technologies capable of retarding or reversing aging processes. While discussions of life extension research can seem quite futuristic and impractical, there are some powerful existential factors that might well generate considerable public support for life extension strategies if effective biomedical interventions emerge. Rather than providing philosophical justifications supporting or condemning efforts to increase human longevity, this essay seeks to promote a better understanding of the factors generating contemporary interest in prolonging life and postponing death. (shrink)

Since at least the 1960s, science and technology studies scholars have distinguished between technological and social fixes. The author introduces a new concept for the STS theoretical tool kit—the cultural fix—and illustrates this concept using examples from her own research on pregnancy loss and neonatal intensive care, as well as that of anthropologists Katherine Newman and Sherry Ortner on downward mobility and unemployment in the United States. It is argued that the cultural fix represents a distinctive anthropological contribution to the (...) field. (shrink)

Using 20 video recordings of Emergency Room treatment and over 5 years of Emergency Room fieldwork data, this study elucidates how interactional processes serve as resources for generating a cultural script of death in Japan called ‘Mitori’. A sudden death at a hospital, in which a patient is removed from their social network, is often considered as the opposite of a ‘good home death’. This study shows how hospital deaths in Japan are strongly interrelated with family participation. After showing the (...) point where medical professionals decide to terminate resuscitation attempts, the analysis depicts interactional steps that shift the definition of environment from a place for treatment toward a place where ‘Mitori’ occurs; that is, a family encounter occurs with a dying patient. Conversation between a doctor and a family member consists of a step-by-step evidence- building story. The final section displays both conversational and physical resources used to establish ‘Mitori’. (shrink)

The twentieth century saw the emergence of a new episteme of death that fundamentally revolutionized values relating to mortality and life. Previously this revolution has been seen primarily in terms of the sequestration and denial of death, but it is necessary to go farther and recognize that these are really just an aspect of the industrialization ‐the Fordism ‐ of death. This takes two major institutional forms: the militarization, and the medicalization of death. Both ensure that death is administered on (...) an industrial scale and in accord with institutional and bureaucratic imperatives and values. The total mobilization of the Great War was the prototype that revealed the potential of this approach. With the subsequent medical revolution of the middle decades of the century the approach was quickly rationalized and refined into a new episteme of administered death, with ‘administer’ being understood in its twin senses of ‘to manage’ and ‘to dispense’ — the two characteristic orientations to death in contemporary society. This new episteme quickly displaced traditional values derived predominantly from religious, philosophical, mythological and traditional sources and has advanced far beyond their responsive capacity, as the many interminable debates around issues of bioethics reveal. While this new episteme might enhance the human condition, it also has great potential for the impoverishment of the human spirit, and for the further reduction of human beings to the status of mere components and functions to be administered within medico‐technological systems that are themselves parts of an increasingly globalized economic system. (shrink)

Bu yazıda, ölmenin ve öldürmenin özel biçimlerinin yaşam ve ölüm arasındaki karanlık bir bölgede veyahut bulanık bir sınırda meydana geldiği gerçeğini göz önünde bulundurarak, ötenazi olgusu üzerinden, Michel Foucault ve Giorgio Agamben’in biyopolitika kavramsallaştırmaları arasında bir orta yol bulmayı deneyeceğim. Bu doğrultuda, tarihsel bir arka plan sunmanın elzem olduğuna inandığım çalışmaya, egemen iktidarın bugünkü felsefi temellerini aldığı ve teorik doğrulamalarını sağladığı mevcut hukuki-tıbbi-siyasi kompleksi anlamak için, ötenazi ve intiharın kısa bir tarihi ile başlayacak; ve iktidar ile ölüm arasındaki ilişkinin her (...) daim oldukça sorunlu olduğunu göstereceğim. İkinci olarak, Foucaultcu biyopolitika bağlamında ölümün ortadan kayboluşunun anlam[lar]ına yoğunlaşacak ve Foucault’nun düşüncesinin aksine, Batı’da yirminci yüzyılın ortalarından itibaren ölümün yeniden-keşfedilmesine benzer bir durumun gerçekleştiğini öne süreceğim. Ve nihayet makalenin üçüncü ve son kısmında, ötenazi sorunundan hareketle, Agamben’in yaşanmaya değmeyen hayat kavramını takdim ederek, Foucault’nun biyopolitika düşüncesindeki eksi[kli]ği, yani ölüm politikasını, tamamladığını ileri süreceğim. (shrink)

It is not uncommon for patients with advanced disease to express a wish to hasten death. Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient’s personal and sociocultural background, or which necessarily imply taking concrete steps to ending one’s life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we analyse in (...) greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: assumptions related to patients’ moral understandings in terms of dignity, autonomy and authenticity; assumptions related to social interactions; assumptions related to the value of life; and assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients’ experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost. (shrink)

The control of women's public form of mourning in India was undertaken in the colonial era by male social reformers. The article argues that this was both a part of the process which enabled the consolidation of colonial rule – since laments were repositories for the social memory of the dead which could lead to vendettas – and that this fed into the construction of a specific domestic ideology. The latter was predicated on the privatization and interiorization of grief, whereby (...) women were enjoined to bear themselves with rectitude. The taming of the transgressive form of mourning, whereby women who had earlier exhibited their grievances in a spectacular form through lament, took to more quietist (devotional) forms, has reconfigured the relationship to death and mourning. However, this has been a partial phenomenon, limited to the upper-caste, middle-class milieu. Where women continue to hold a dependent position within community, nation-state and international economy, the article suggests that, in contexts of modern conflicts and warfare, where death runs ‘wild’, the exhibitionist and ‘wild’ forms of showing grief and anger continue to be demonstrated by women as an appropriate public response. (shrink)

Our current society seems to require a sharp separation between what can be tolerated in public and what must remain hidden. There is explicit and implicit censorship of both the subject of death and of the crying and suffering of surviving relatives and friends. Medieval literature and literary studies, however, show how the experience of dying and its appropriate manifestations of grief seemed to be more integrated into everyday life, as opposed to the apparent “disintegration” of nowadays. It is possible (...) to begin to detect this evolution already in medieval Hispanic literature itself, from an apparently more public, visible and integrated death in 13th-century Hispanic literature to a more private, concealed and disintegrated death in 15th-century Hispanic literature. This process will continue its journey to the present society of eternal springs and summers from which we have eradicated autumns and winters, seasons as necessary for the cycle of life – for personal, psychological and social balance – as the first two. Keywords: death; mourning; crying; medieval literature. Resumen Nuestra sociedad actual parece presentar una tajante separación entre lo que puede ser tolerado en público y lo que debe permanecer oculto. Hay una censura explícita e implícita tanto del tema de la muerte como del llanto y el sufrimiento de los familiares y amigos supervivientes. Sin embargo, la literatura medieval y los estudios literarios sobre la misma muestran cómo la experiencia del morir y sus apropiadas manifestaciones de dolor parecían estar más integradas en la vida cotidiana en contraposición a la aparente “desintegración” actual. Es posible comenzar a detectar esta evolución ya en la propia literatura hispánica medieval, desde una muerte aparentemente más pública, visible e integrada en la literatura hispánica del siglo XIII hasta una muerte más privada, oculta y desintegrada en la literatura hispánica del siglo XV. Este proceso continuará su recorrido hasta una sociedad actual de eternas primaveras y veranos de la que hemos erradicado los otoños e inviernos, estaciones tan necesarias para el ciclo de la vida —para el equilibrio personal, psicológico y social— como las dos primeras. Palabras clave: muerte; duelo; llanto; literatura medieval. (shrink)

In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve “good palliative care”. The aim of this study has been to analyse how experts make sense of the development and the current state of palliative care. Departing from this aim, focus has been on identifying how personal experiences of ‘the self’ are intertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliative care. Twelve (...) qualitative interviews were conducted. Four scripts were identified after analysing the empirical material: 1. script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain definitions. The findings of this study illustrate how experts in complex ways intertwine experiences of ‘the self’ with meta-levels concepts in order to make sense of the field of palliative care. The participants did not endorse one “right way” of “good” deaths. Instead, palliative care was considered to be located in a complex state where the historical development, consisting of both desirable ideals, death denials and lack of guidelines, and more recent developments of strives towards universal concepts, “improvement” and increased bureaucracy altogether played a significant role for how palliative care has developed and is organised and conducted today. (shrink)

City-dwellers who are threatened by the risk of natural or social disasters are in search of safer houses. Each attempt to satisfy their need for safety, however, turns into another version of the security problem; so much so that, escaping from risk itself turns into different risks. The film 10 to 11 focuses on the socio-spatial conflict between a stranger and his neighbours who are anxious about a possible earthquake risk in Istanbul. Mithat, the protagonist of the film, is a (...) stranger not only to place but essentially to time. He lives within time and understands place as an essential means loaded by temporal experiences and memories. This paper deals with the multiple dichotomies between time and memory, between risk and fear, between aesthetics and security, and between attachment and profit in the context of urban transformation. The stranger, who is analysed for the first time as a temporal being in this paper, is discussed using Zygmunt Bauman’s concepts of uncertainty and liquid modernity, Richard Sennett’s capitalism, Ulrich Beck’s risk society, Frank Furedi’s culture of fear, Stephen Bertman’s hurried culture, Elias Canetti’s death, Giorgio Agamben’s forgotten and gone, Svetlana Boym’s nostalgia, and Halbwachs, Assmann, Connerton, and Arendt’s memory, as well as around the temporal spaces of museums, bibliopoles, antique shops, and cemeteries. (shrink)

Although death is an inevitable part of life, tourism scholarship has not comprehensibly engaged with this concept. Death-related tourism literature has focused disproportionally on places and experiences of dark tourism, leaving a vast array of other dying-related tourism discourses at the periphery. Drawing on anthropological and existential conceptualisations of death, we develop an all-encompassing theoretical framework comprised of four dimensions: Perspective, Intention, Number, and Involvement. Supported by existing studies, mass media reports, and other secondary data, we demonstrate that the interplay (...) between death and tourism is complex and involves a range of events, tourists' behaviors and experiences. The conclusion proposes future research directions at the intersection of death and tourism. (shrink)