Ivan Illich, philosopher, historian, priest and social commentator died in Bremen, Germany on December 2, 2002. Illich was noted for his critique of the Church, education and medicine but his concepts dealt with more fundamental issues. This article reveals aspects of Illich, the man, and explores his ideas as they apply to the meaning of medicine and, in particular, the role of health care in contemporary society.

Responding to Max Weber’s modern diagnosis of nature, science, and medicine as disenchanted, this article aims to reenvision nature and medicine with a sense of enchantment drawing from the Christian themes of creation, Christology, suffering, and redemption. By reenvisioning nature as enchanted with these theological themes, the vocation of medicine might be revitalized in terms of suffering presence, healing care, and works of mercy toward the neighbor in need.

In the clinical practice of palliative medicine, recommended communication models fail to approximate the truth of suffering associated with an impending death. I provide evidence from patients' stories and empiric research alike to support this observation. Rather than attributing this deficiency to inadequate training or communication skills, I examine the epistemological premises of the biomedical language governing the patient-physician communication. I demonstrate that the contemporary biomedicine faces a fundamental aporetic occlusion in attempting to examine death. This review asserts that the (...) occlusion defines, rather than simply complicating, palliative care. Given the defining place of aporia in the care for the dying, I suggest that this finding shape the clinicians' responses to the needs of patients in clinical care and in designing palliative research. Lastly, I briefly signal that a genuinely apophatic voice construing the occlusion as a mystery rather than an aporia may be superior to the present communication and empathy models. (shrink)

This article explores the way that senile dementia is represented in contemporary culture, with particular reference to texts which narrate the experience of caring for a parent or spouse with one form of the illness. These narratives raise problematic issues about the materiality of the body and its relation to individual identity, and the unstable relationship between memory and identity in postmodern culture, by drawing on the actual experience of bodily dependency and disorientating memory loss in dementia patients. These speculations (...) about the body, memory and the self are ultimately related in narratives of dementia to the inevitable process of aging and dying and the cultural meanings attached to it. The article places the representation of dementing illnesses within a Foucauldian narrative of surveillance and control in the discourse of aging and death in modern Western societies, redemptive views of illness in western culture and arguments about death in contemporary theory. (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)

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)

North Atlantic culture lacks a commonly shared view on dying well that helps the dying, their social environment and caregivers to determine their place and role, interpret death and deal with the process of ethical deliberation. What is lacking nowadays, however, has been part of Western culture in medieval times and was known as the ars moriendi (art of dying well) tradition. In this paper an updated version of this tradition is presented that meets the demands of present day secularized (...) and multiform society. Five themes are central to the new art of dying: autonomy and the self, pain control and medical intervention, attachment and relations, life balance and guilt, death and afterlife. The importance of retrieving the ancient ars moriendi outreaches the boundaries of palliative medicine, since it deals with issues that play a central role in every context of medical intervention and treatment. (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)

Although it is widely acknowledged that Foucault’s accounts of the concept of heterotopia remain briefly sketched and somewhat confusing, the notion has provoked many interpretations and applications across a range of disciplines. In particular, it has been coupled with different stages or processes of modernity and persistently linked to forms of resistance. This article re-examines Foucault’s concept through a close textual analysis. It contrasts heterotopia with Lefebvre’s conceptualization of heterotopy and wider formulations of utopia. Drawing on Foucault’s study of the (...) spaces of literature of Borges, and particularly Blanchot, the article argues that heterotopia refers to varied spatial and temporal disruptions that imaginatively interrogate and undermine certain formulations of utopia. It concludes by outlining how heterotopia contests the space in which we live. (shrink)

The word dignity is frequently used both in clinical and philosophical discourse when referring to and describing the ideal conditions of the patient's treatment, particularly the dying patient. An exploration of the variety of meanings associated with the word dignity will note dignity's ambiguous usage and reveal instrumental concepts needed to better understand the discourse of the dying. When applied to a critique of recent and contemporary criticisms of the medical community's handling of the dying, such concepts might provide a (...) more coherent notion of dignity. Rather than a separate construct, a death with dignity might be viewed as an interactive process among the dying and their caretakers. Together, this interdependent amalgam engages in humanizing communication aimed toward understanding the final needs and wants of the patient. (shrink)

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

Relatives’ presence in connection with cardiopulmonary resuscitation and sudden death at the intensive care unit Within Norwegian intensive care units it is common to focus on the needs of the next of kin of patients undergoing end‐of‐life care. Offering emotional and practical support to relatives is regarded as assisting them in the initial stages of their grief process. It has also become usual to encourage relatives to be present at the time of death of close relatives. How can dignified end‐of‐life (...) care coexist with the sometimes turbulent and dramatic character of intensive care in the highly technological environment of intensive care units? This paper describes a case study based on an incident that took place at the intensive care unit (ICU) of Trondheim University Hospital, Norway, in which the relatives of a newly deceased patient voiced unusually strong dissatisfaction with the way they were excluded in connection with cardiopulmonary resuscitation (CPR). The next of kin's criticism highlights an important paradox as well as a degree of inconsistency in lifesaving and end‐of‐life care at the ICU. I argue that an investigation of the multiple identities within medical practice can illuminate the potential for clashes between lifesaving and end‐of‐life care, as described and analysed in this paper. (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)

The introduction of respiratory machines in the 1950s may have saved the lives of many, but it also challenged the notion of death itself. This development endowed “machines” with the power to form a unique ontological creature: a live body with a “dead” brain. While technology may be blamed for complicating things in the first place, it is also called on to solve the resulting quandaries. Indeed, it is not the birth of the “brain-dead” that concerns us most, but rather (...) its association with a web of epistemological and ethical considerations, where technology plays a central role. The brain death debate in Israel introduces highly sophisticated religious thought and authoritative medical expertise. At focus are the religious acceptance and rejection of brain death by a technologically savvy group of rabbis whose religious doctrine––along with a particular form of religious reasoning––is used to support the truth claims made from the scientific community but challenge the ways in which they are made credible. In our case, brain death as “true” death is made religiously viable with the very use of technological apparatus and scientific rhetoric that stand at the heart of the scientific ethos. (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)

Western culture has a few traditions of representing the human body – among them mortuary art (gisants), the freak show, the culture of the relics, renaissance art and pre-modern and modern anatomy. A historical analysis in the spirit of Norbert Elias is offered with regard to body – person relationship in anatomy. Modern anatomy is characterized by separating the story of the person from the story of the body, a strategy that is incompatible with the bio-psycho-social paradigm of clinical medicine. (...) The paper discusses different aspects of the above traditions and how they might bear on this conflict and on contemporary bioethics and bedside practice. (shrink)

In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick’s observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even at the (...) price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients’ life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever (“total pain” or critical suffering). Only in the fourth circle are people hedonists. (shrink)

How can we understand the phenomena of loss and mourning in the Heideggerian framework? There is no established interpretation of Heidegger that gives an elaborate account of the phenomena of loss and mourning, let alone gauges its importance for our understanding and assessment of authentic existence in Heidegger. This paper attempts to do both. First, I give a detailed exposition of Heidegger’s analysis of the phenomena of mourning and loss and show that Heidegger’s analysis of mourning in his early and (...) late work is strikingly in line with his collectivist understanding of Being-with. This demonstrates, contrary to what some of his proponents argue, that Heidegger does not follow the kind of dynamic understanding of Being-with that places the other within fine-grained spaces of possibility. Second, with reference to Heidegger’s existential philosophy, I construct a phenomenology of mourning and grief. Though Heidegger himself fails to explain the relationships in which one mourns after a close other, we can develop a unique phenomenology of mourning with reference to Heidegger, which shows that each loss is singular and can be equiprimordial with one’s own death in opening one to the possibility of an authentic existence. In this new understanding of authenticity, loss is regarded as a powerful force, akin to death, in leading one toward their self-owned existence. (shrink)

This is part 1 of 6 of the dossier What Do We Talk about when We Talk about Queer Death?, edited by M. Petricola. The contributions collected in this article sit at the crossroads between thanatology and queer theory and tackle questions such as: how can we define queer death studies as a research field? How can queer death studies problematize and rethink the life-death binary? Which notions and hermeneutic tools could be borrowed from other disciplines in order to better (...) define queer death studies? The present article includes the following contributions: – MacCormack P., What does queer death studies mean?; – Radomska M., On queering death studies; – Lykke N., Death as vibrancy; – Hillerup Hansen I., What concreteness will do to resolve the uncertain; – Olson P., Queer objectivity as a response to denials of death; – Manganas N., The queer lack of a chthonic instinct. (shrink)