Since the middle of the 20th century, suicidology, as a group of disciplines working to understand and prevent suicide, has reinforced the long-held view that suicide is caused first and foremost b...

Honesty is essential for the care of seriously ill and dying patients. The current study aimed to describe how nurses experience honesty in their work with patients receiving palliative care at home. The interviews in this phenomenological study were conducted with 16 nurses working with children and adults in palliative home-based care. Three categories emerged from analyses of the interviews: the meaning of honesty, the reason for being honest and, finally, moral conflict when dealing with honesty. The essence of these (...) descriptions was that honesty is seen as a virtue, a good quality that a nurse should have. The nurses’ ethical standpoint was shown in the moral character they show in their work and in their intention to do good. This study could help nurses to identify different ways of looking at honesty to promote more consciousness and openness in ethical discussions between colleagues and other staff members. (shrink)

In the regeneration of shamanism in Buryatia, kinship and locale play a significant and, indeed, determining role. Shamans, as representatives of their clans and kinship lines, are the intermediaries between people and the sacred, between people and the spirits in nature, in particular spirits of a specific locale which is linked historically to a clan and to the ancestors who have been buried there. It is to these ancestral spirits as well as to the spirits of place that the clan (...) shaman makes entreaties and asks for blessings and protection from ill fortune.The historical relationship of the Buryat tribes to the present land of Buryatia and Ust‐Orda region and the kinship structure of these tribes as existent prior to the Soviet period is shown to have parallels with traditional spiritual territorial cults of Buryats. There is a clear‐cut link between Buryat social organization into hierarchical units of kinship structures along patrilineal descent lines and their conceptions of deities according to locality, that is, they traditionally conceived of protective deities as associated with wider or narrower territorial groupings which corresponded to the social groups of tribes, clans, villages, and families.Several cases of renewal of home and hearth through appeal to ancestral and local spirits by the clan shaman are presented. (shrink)

In the regeneration of shamanism in Buryatia, kinship and locale play a significant and, indeed, determining role. Shamans, as representatives of their clans and kinship lines, are the intermediaries between people and the sacred, between people and the spirits in nature, in particular spirits of a specific locale which is linked historically to a clan and to the ancestors who have been buried there. It is to these ancestral spirits as well as to the spirits of place that the clan (...) shaman makes entreaties and asks for blessings and protection from ill fortune.The historical relationship of the Buryat tribes to the present land of Buryatia and Ust‐Orda region and the kinship structure of these tribes as existent prior to the Soviet period is shown to have parallels with traditional spiritual territorial cults of Buryats. There is a clear‐cut link between Buryat social organization into hierarchical units of kinship structures along patrilineal descent lines and their conceptions of deities according to locality, that is, they traditionally conceived of protective deities as associated with wider or narrower territorial groupings which corresponded to the social groups of tribes, clans, villages, and families.Several cases of renewal of home and hearth through appeal to ancestral and local spirits by the clan shaman are presented. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:American Journal of Philology 123.3 (2002) 369-406 [Access article in PDF] The Body And Its Representations In Aristophanes' Thesmophoriazousai:Where Does The Costume End? Eva Stehle Aristophanes' Thesmophoriazousaiis a rich and funny play, but it gives the impression of lacking a sustained point. Theater directors can happily stage it, subverting Aristophanes by casting women and recasting the text to speak to modern disputes over gender, sex, and politics, as Mary-Kay (...) Gamel has done so wonderfully (see her article in this volume). But the student of comedy who wishes to study the play in the context of its original production in 411, probably at the City Dionysia, has a harder time. Because it has no overt political theme it was for long passed over as a paignion, an escape from relevance in the tense atmosphere of that spring. As a "woman play" it seems less satisfactory than Lysistrata or Ekklesiazousai because it has no female lead character and Euripides' nameless kinsman (whom I call "Inlaw") upstages the women and their concerns. 1 With the current interest in performance and the metatheatrical aspects of comedy, Thesmophoriazousai has finally come into its own as a sly dialogue on theater and ritual, comedy versus tragedy, and gender. 2 But the older view remains in effect that the play has no politics. At the same time, it is assimilated to Aristophanes' other plays in its thematics, while its striking anomalies go unremarked. As a result, it still does not quite come into focus. [End Page 369]As a play about ritual and theater, Thesmophoriazousai is said to absorb women's ritual and restage it within its own festival setting at the City Dionysia. Yet this is the only one of Aristophanes' surviving plays in which the principal male characters exit the stage before the end of the play. Here they flee, in female dress to boot, leaving the chorus to play out the final scene with the Scythian slave. 3 Euripides and Inlaw do not share in the fun of sending the slave running in one wrong direction then another. And the play ends as it began, on Nesteia, the day of fasting for the women performing the Thesmophoria. 4 No revelry brings on the transition to feast and renewal that the audience probably expected. No procession points the way to a new instauration created by the comedy. 5 Given the importance of processions in Athenian life as an expression of community revival, this is a speaking absence. 6As a play about tragedy and comedy, Thesmophoriazousai is said to show the triumph of comedy over tragedy as the more encompassing and flexible art form. The plots of tragedy fail to rescue Inlaw, while a comic plot succeeds: Euripides brings on a dancing girl, Elaphion, who seduces the Scythian slave away for sex while Euripides frees Inlaw. But Euripides' final trick is no comic plot. In the Aristophanic comic plot the [End Page 370] hero wins a desirable young woman, often one whose name promises new fertility, peace, or power; he does not give one away to the blocking figure. 7 Euripides also capitulates to the women, promising never to speak ill of them again. Only by relinquishing both triumph and sex (and thereby also festivity) does he salvage his poor kinsman's life. Euripides' plot fit for a "barbarian nature" (1129) is rather a farcical version of his own rescue-play plot: like Helen and Andromeda it involves deceiving the blocking figure, which allows the principals to escape while leaving others (chorus or a god) to thwart the chase. But its success is based on abandoning pure representation and giving the "real" (within the world of the play) woman away to the internal audience in order to rescue a pseudo-woman.As for gender representation in the play, most analysis holds that men prevail. Different commentators take Aristophanes to be revealing that women on stage are all really men, or questioning what a woman really is since she is the very figure of mimesis, or showing that women deserve... (shrink)

Nietzsche’s cardinal ideas - God is Dead, Übermensch and Eternal Return of the Same - are approached here from the perspective of psychiatric phenomenology rather than that of philosophy. A revised diagnosis of the philosopher’s mental illness as manic-depressive psychosis forms the premise for discussion. Nietzsche conceived the above thoughts in close proximity to his first manic psychotic episode, in the summer of 1881, while staying in Sils-Maria (Swiss Alps). It was the anniversary of his father’s death, and also of (...) the break-up of his friendship with Wagner, the most important relationship in his life. Despite having been acquainted with these ideas from reading philosophy and literature, Nietzsche created them de novo and imbued them with very personal meaning. Surprisingly, he never defined or explained his cardinal thoughts in his published writings, perhaps because rationally he could not. A resultant hermeneutic vacuum provoked an avalanche of interpretations in secondary literature. But could these ideas be delusions? A current definition of delusion is challenged, and an attempt is made at a limited comparison between delusion, scientific/philosophical doctrine and poetic creation. It is also argued that psychosis is a way of re-living trauma, and delusions can therefore be seen as a form of reasoning that helps to make sense of the world in a state of psychotic disintegration. Far from being false beliefs, delusions are a true expression of one’s innermost feelings and pain, albeit indirectly. The relationship between early parental loss and repeated trauma, psychosis and creativity is also explored. Indo-Pacific Journal of Phenomenology , Volume 8, Edition 1 May 2008. (shrink)

This study explored how women with a diagnosis of cancer (lymphoma) deal with moral concerns related to their responsibility as parents. Ten women with cancer and who had children living at home were interviewed. The interviews were analysed according to the constant comparative method used in grounded theory. In order to provide a focus for the analysis, the ethics of care and the concept of mothering were used as sensitizing concepts. The core concept ‘experience of dealing with moral responsibility of (...) being a parent with cancer by redefining oneself as a mother’ was identified. The processes involved were: interrupted mothering; facing the life-threatening illness and children’s reactions; striving to be a good mother; attempting to deal with moral responsibility; and coming to terms with being a mother. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Silent Screams; Lily's StoryEva V. Regel"Trauma is personal. It does not disappear if it is not validated. When it is ignored or invalidated, the silent screams continue internally heard only by the one held captive. When someone enters the pain and hears the scream, healing can begin."—Danielle Bernock, "Emerging Wings; A true story of Lies, Pain and the Love that Heals."Some patients stay with you long after they leave. (...) They appear in your mind when you walk by the hospital room they occupied or when someone mentions their name. There is [End Page 19] something about the narrative of their life and illness that makes you hold on to them. Lily is one such patient for me.Lily was a 45-year-old paraplegic woman who was well known to many providers in the hospital. She had a complex trauma history (childhood physical and sexual abuse, intimate partner violence, domestic violence), homelessness, and multiple psychiatric admissions. In addition, she had a complex medical history, including chronic pain issues and substance use disorder. Many providers considered her to be a "very difficult" or "challenging" patient because she would "dictate" her care, had low distress tolerance and would have explosive angry outbursts requiring frequent visits from Police and Security. To top it off, after months of a challenging stay on a unit, she would eventually leave against medical advice. Everyone involved in her care felt that discharge to a safe setting such as a skilled nursing facility would be her best option. Yet, she was a very "hard" sell to any facility because of her behavioral issues, relatively young age, extensive history of drug use, and medication non-compliance. Even though the unit I worked in was familiar with "difficult" patients like Lily, the floor staff was anxious and concerned about the effect Lily would have on patients, staff, and providers. The combined anticipatory anxiety worsened after we were told that Lily left against medical advice three days before her admission to our unit as a reaction to the staff's attempt to develop a behavioral plan.I remember the day I met Lily. I was working as the clinical social worker on the floor, helping patients with adjustment to coping with hospitalization, addressing mental health issues that usually exacerbate in the acute care setting, and providing support to the staff caring for a psychosocially complex patient population. It was the second day after Lily arrived on the floor, and Police and Security had already come up three times. As I walked out of another patient's room, a bedside nurse stopped me in the hallway. "Can you please talk to her? … Please, just talk to her, or sit with her. I just need a break. I have been in that room since I started my shift. I am exhausted." The nurse had an exasperated and pleading look, and even though I was rushing to a meeting, I decided to meet with Lily instead. When I walked into her room, I saw a thin, small-framed woman with brown hair pulled back into a tight bun. She had freckles peppered all over her round face, neck, and chest. Her features were delicate and small, and her almond-shaped green eyes were her most prominent feature. She was wearing a white tee and jeans. She was sitting in her wheelchair; her makeup bag was lying on the table next to her. I introduced myself and my role on the team, trying not to stumble under a very heavy glare. "Tell them to leave me alone. That nurse is always in my room. Spying. I might not be able to walk, but I can still use my hands. I can call if I need help."And so I did. And when I came back, Lily and I talked a little about her life. And the next day, we talked a little more. And then again. Lily was giving me small glimpses of who she was and the events in her life. Then, one day, in the middle of the conversation about her day and telling me how much she hated to be confined to her hospital room, she looked... (shrink)

This essay, the last in a series, focuses on the relationship between Nietzsche’s mental illness and his philosophical art. It is predicated upon my original diagnosis of his mental condition as bipolar affective disorder, which began in early adulthood and continued throughout his creative life. The kaleidoscopic mood shifts allowed him to see things from different perspectives and may have imbued his writings with passion rarely encountered in philosophical texts. At times hovering on the verge of psychosis, Nietzsche was able (...) to gain access to unconscious images and the music of language, usually inhibited by the conscious mind. He reached many of his linguistic, psychological and philosophical insights by willing suspension of the rational. None of these, however, could have been communicated had he not tamed the subterranean psychic forces with his impressive discipline and hard work. (shrink)

This study explored Swedish school nurses' experiences of school health record documentation. Fifty per cent of a representative sample of Swedish school nurses (n = 129) reported difficulties with documenting mental and social health problems in family relationships, schoolchildren's behaviour, and school situations. Ethical considerations concerning fears of misinterpretation and practical barriers to documentation were expressed as reasons for their worries. Mental and social ill health is an increasing and often dominating problem among schoolchildren, thus proper documentation is a basic (...) issue, both for individuals and for the population as a whole. School nurses obviously need professional guidance regarding documentation and ethical challenges. Systematic effort should be directed towards recognition and support of these nurses' unique opportunities to consider, follow and promote all aspects of schoolchildren's health. (shrink)

Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians’ and nurses’ perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis (...) was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient’s decision-making process, The challenge awaiting the family members’ processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient’s possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context. (shrink)

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted (...) differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

BlOMQVIST K, THEANDER E, MOWIDE I and LARSSON V. Nursing Inquiry 2010; 17: 317–323 What happens when you involve patients as experts? a participatory action research project at a renal failure unitAlthough there is a trend towards developing health care in a patient‐centred direction, changes are usually planned by the professionals without involving the patients. This paper presents an ongoing participatory action research project where patients with chronic renal failure, nurses at a specialist renal failure unit, a hospital manager and (...) a researcher worked together to develop patient‐centred care. The project combined the expertise of patients in their own experiences of living with a chronic condition with the professional expertise of nurses, the manager and the researcher. As the workload on the unit was uneven, the development work needed to be low in intensity but long‐term. Based on a number of dialogues in focus groups, four main development areas were identified; access to test results, prerequisites for postponing the progress of the illness, general awareness and understanding of living with chronic renal failure, and family‐focused care. A number of changes have been planned or implemented, such as developing a prototype for a web‐based feed‐back system, expanding patient education to newly diagnosed patients, steering the nurses' role towards a guiding and family‐focused function, and planning a digital story‐telling workshop. Involving committed people who have the mandate to change practices were prerequisites for success. (shrink)

Debates on morally acceptable and lawful end-of-life practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death. We demonstrate that this reasoning is based on flawed assumptions: CDS is a (...) morally preferable alternative to euthanasia; CDS can meet the same patient needs as euthanasia; children lack the capacity and experience to make EOL decisions; unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices. (shrink)

The aim of the study is to rethink the ethics of advanced motherhood. In the literature, delayed childbearing is usually discussed in the context of reproductive justice, and in relationship to ethical issues associated with the use and risk of assisted reproductive technologies. We aim to go beyond these more “traditional” ways in which reproductive ethics is framed by revisiting ethics itself through the lens of the figure of the so-called “older” mother. For this purpose, we start by exploring some (...) of the deep seated socio-cultural discourses in the context of procreation: ageism, ableism and the widespread bias towards geneticism and pronatalism. Afterwards, we provide a critical overview of the key arguments against or in support of advanced motherhood. We then briefly discuss how entrenchment by both sides has produced an impasse in the debate on the ethics of advanced motherhood and proceed by arguing that it is fundamental to bring about a change in this narrative. For this purpose, we will revisit the feminist usage of the concept of vulnerability which will allow us both to criticize culturally prescribed norms about motherhood and to address the painful reality of age-related fertility decline. In the last section, we argue that instead of defining “older” motherhood as an ethical problem, we should problematize the fact that female reproductive ageing is an understudied and ill-sourced topic. We believe that allocating resources to research to better understand female reproductive ageing is not only ethically permissible, but might even be ethically desirable. (shrink)

A paradigm shift in public health and medicine has broadened the field from a singular focus on the ill effects of negative states and psychopathology to an expanded view that examines protective psychological assets that may promote improved physical health and longevity. We summarize recent evidence of the link between psychological well-being and physical health, with particular attention to outcomes of mortality and chronic disease incidence and progression. Within this evolving discipline there remain controversies and lessons to be learned. We (...) discuss measurement-related challenges, concerns about the quality of the evidence, and other shortcomings in the field, along with a brief discussion of hypothesized biobehavioral mechanisms involved. Finally, we suggest next steps to move the field forward. (shrink)

Background: Organ donation and transplantation have made it possible to both save life and to improve the quality of life for a large number of patients. In the last years there has been an increasing gap between the number of patients who need organs and organs available for transplantation, and the focus worldwide has been on how to meet the organ shortage. This also rises some ethical challenges. Objective: The objective of this study was to explore healthcare professionals' experience of (...) ethics related to care and interaction with critically ill patients with severe brain injuries and their families. Research design: A hermeneutic phenomenological approach was used to explore the participants' experiences. Methods for collecting data were a combination of participant observations and in-depth interviews. Participants and research context: Two ICUs in a Norwegian university hospital were recruited for data collection. A total of 12 cases were observed, and 32 of the healthcare professionals involved were interviewed. Ethical considerations: The study was approved by the Regional Committee for Research Ethics. Permission to the study in the ICUs was obtained from the Chief Physician in the two ICUs respectively. The right of the participants was ensured by written, voluntary, and informed consent. Findings: From the thematic analysis, a structure of the participants' experiences emerged as a process. While the patients' condition was clarified through phases of prognostic ambiguity, gradual clarification and prognostic certainty, interaction with the families was characterized by ambiguity that involved withholding. The prognostic process had a great impact on how the healthcare professionals interacted with the family. The interaction challenged the participants' caring values in various ways and captured an important structure in their experiences of the ethical interaction with the patients' families. These challenges distinguish caring for families in donation situations from caring for relatives of critically ill patients in general. Discussion: In the discussion we have illuminated how professional ethics may be threatened by more pragmatic and utilitarian arguments contained in regulations and transplant act. Conclusion: Ethical questions should be discussed more both in educations of healthcare professionals and in clinical practice. (shrink)

Rapid Ethical Assessment is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. Qualitative study employing rapid ethnographic approach was conducted from May–July, 2017, at the Tikur (...) Anbessa Specialized Referral Hospital. In-depth and key informants’ interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient’s time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term “cancer” was associated with fear and anxiety. Alternatively, uses of phrases like “breast or cervical illness/disease” were suggested during patient interviews. Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients. (shrink)

in Undetermined Table d’Hôte Ingar Brinck: Investigating the development of creativity: The Sahlin hypothesis 7 Linus Broström: Known unknowns and proto-second-personal address in photographic art 25 Johan Brännmark: Critical moral thinking without moral theory 33 Martin Edman: Vad är ett missförhållande? 43 Pascal Engel: Rambling on the value of truth 51 Peter Gärdenfors: Ambiguity in decision making and the fear of being fooled 75 Göran Hermerén: NIPT: Ethical aspects 89 Mats Johansson: Roboethics: What problems should be addressed and why? 103 (...) Johan Laserna: Ambivalenta bilder 113 Anna-Sofia Maurin: Metaphysical explanation 161 Kevin Mulligan: Is preference primitive? 169 John D. Norton: How does your garden grow? 181 Johannes Persson & Annika Wallin: The distinction between internal and external validity 187 Johanna Seibt: Becoming our selves 197 Paul Slovic, Robin Gregory, David Frank, and Daniel Vastfjall: Confronting the collapse of humanitarian values in foreignpolicy decision making 209 Peter Sylwan: Det eviga livet 215 Claudine Tiercelin: Chance, love and logic: Ramsey and Peirce on norms, rationality and the conduct of life 221 Epilog 257 Frank Ramsey. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesZohar Lederman, Ola Ziara, Rachel Coghlan, Oksana Sulaieva, Anna Shcherbakova, Oleksandr Dudin, Vladyslava Kachkovska, Iryna Dudchenko, Anna Kovchun, Lyudmyla Prystupa, Yuliya Nogovitsyna, Ghaiath Hussein, Kathryn Fausch, P. P. Kyaw, Ayesha Ahmad, Richard W Sams II, Handreen Mohammed Saeed, Artem Riga, Ryan C. Maves, Elizabeth Dotsenko, Irina Deyneka, Eva V. Regel, and Vita Voloshchuk• An Unsettling Affair• How We Keep Caring While Walking Through Our Pain• (...) Adjusting Laboratory Practices to the Challenges of Wartime• Why We Stay• A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the War• When Ethics Survives Where People Do Not: A Story From Darfur• Burma’s Healthcare Under Fire: My Experience as an Exiled Medical Professional• When a Conflict Collapses on a Child: An (Aborted) Medical Evacuation of a Hazara Toddler During the Kabul Airport Blast and the Taliban Takeover• The Vagaries and Vicissitudes of War• Providing Care to a Potential Aggressor: An Ethical Dilemma• One Surgeon’s Experience During Armed Conflict in Ukraine• The Limits of Our Obligations• A Liberating Breath• Soldiers of the Invisible Front: How Ukrainian Therapists Are Fighting for the Mental Health of the Nation Under Fire• Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineCopyright © 2023 Johns Hopkins University Press... (shrink)

Communication about diagnosis and medical treatment for children suffering from life-threatening illnesses is complex. It is a primary step in involving underage patients and families in care and lays the foundation for obtaining parental permission and patient assent for treatment. In practice child participation in care is often difficult to obtain due to patients' different and sometimes fluctuating preferences, but also parents' protective strategies. Physicians may be susceptible to parental wishes to limit information and feel uncomfortable discussing issues related to (...) uncertainty of cure with patients. A qualitative study in Romanian paediatric oncology units was conducted to explore children's involvement from the perspectives of parents and oncologists. Interviews with participants discussed 18 patient cases. Data were transcribed and thematic analysis was used to interpret and mine patients' involvement during treatment. Different facets of patient participation were identified: restricting, widening and enhancing involvement. A fourth category, unintentional involvement, occurred for all patients due to children's observations during long-term hospitalisations and access to Internet. Uncertainty overarched parental attitudes regarding the extent to which children should be included. Physicians usually complied with parental wishes to limit involvement, but together with parents involved patients at least in a practical way. Adults' protective attitude may backfire, as adolescents' online searches often expose patients to worse-case scenarios. Further research should acknowledge the hazards of restricted diagnosis disclosure and develop clinician tools to support families in communicating with patients. This should be paralleled by physician efforts to elicit patients' needs regarding participation. (shrink)

In this article, I develop an account of genius inspired by Kristeva’s writings on feminine genius in order to argue that certain ill and disabled people should be considered geniuses in the face of social conditions and medical practices that too often marginalize, restrict, and silence them. In contrast to Kristeva’s notion of feminine genius, which relies on an Oedipal developmental story, I argue that we should understand genius as (1) the intimate revolt of (2) a singular subject who (3) (...) occupies a marginalized social position and who, through their revolt, (4) creates a work. Conceiving of genius in this way, I contend, opens up the possibility of recognizing Kristevan genius from marginalized positions other than that of women while remaining true to Kristeva’s account of the intimate. Having developed this account, I offer an example by suggesting that Susan Wendell is one such genius. Finally, I move on to argue that, by taking Kristeva’s theory of the semiotic seriously, we may discover genius among those with “severe cognitive disabilities,” and discuss Eva Kittay’s daughter, Sesha, as an example. My hope is that this concept may help us be attentive to the singular accomplishments of those who face exclusion and silencing as a result of illness or disability. (shrink)

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

Recent advances in the brain sciences have dramatically improved our understanding of brain function. As we find out more and more about what makes us tick, we must stop and consider the ethical implications of this new found knowledge. This ground-breaking book on the emerging field of neuroethics answers many pertinent questions, such as: What makes monitoring and manipulating the human brain so ethically challenging? Will having a new biology of the brain through imaging make us less responsible for our (...) behavior and lose our free will? Should certain brain scan studies be disallowed on the basis of moral grounds? A distinguished group of contributors from a wide range of fields make this an invaluable introduction to neuroethics. (shrink)

A landmark in the scientific literature, the Oxford Handbook of Neuroethics presents a pioneering review of a topic central to the biosciences. It breaks new ground in bringing together leading neuroscientists, philosophers, and lawyers to tackle some of the most significant ethical issues that face us now and will continue to do so.

In October 2022, I had the privilege of joining Hank Greely on the opening panel of the annual International Neuroethics Society (INS) meeting in Montréal, Tiohtiá:ke, situated on the traditional t...

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the “genuine needs” and “legitimate wants” of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has multiple physical and intellectual impairments, (...) for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared‐for. In demanding that the cared‐for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided. (shrink)

According to the most important theories of justice, personal dignity is closely related to independence, and the care that people with disabilities receive is seen as a way for them to achieve the greatest possible autonomy. However, human beings are naturally subject to periods of dependency, and people without disabilities are only “temporarily abled.” Instead of seeing assistance as a limitation, we consider it to be a resource at the basis of a vision of society that is able to account (...) for inevitable dependency relationships between “unequals” ensuring a fulfilling life both for the carer and the cared for.**. (shrink)

The article argues that the theory of plebiscitary leader democracy, originally developed by Max Weber, is in its somewhat rejuvenated version a helpful framework in interpreting longer-term and more recent empirical trends in contemporary democracies, such as the growing personalization of politics, the emergence of populist leaders, rising levels of polarization, and the growing importance of social media. However, to realize the potential of the theory, it should be detached from Jeffrey Green’s most original, yet insufficiently realistic elaboration of plebiscitary (...) democracy that he made a decade ago. The article argues that instead of a passive and unifiable entity, the citizenry should be thought of as reactive and deeply divided, a setting which can be characterized by the metaphor of the infamous Byzantine chariot races rather than that of the theater, implicit in Green’s theory. Plebiscitary democracy should be thought of as representational, where popular control is manifested as the veto power of the popular voice. Additionally, despite its realist minimalism, the theory we propose may still have some critical potential, because it adopts the refurbished ideal of competition. The article closes by identifying further avenues of theoretization leading towards a more elaborate view of PLD. (shrink)

This paper was inspired by William Holman Hunt’s Pre-Raphaelite painting, The Light of the World.https://www.keble.ox.ac.uk/about/chaptel/Light%20of%20the%20world%202.JPG/view. It is a well-known Victorian oil painting with rich symbolism. In this essay I outline the context, describe the painting and reflect on the role of spirituality and contemplation in one’s work and personal life. I offer autoethnographic illustrations and argue that spirituality and contemplation make a positive contribution to wellbeing and can support one’s search for meaning, purpose and connectedness in the world.

In Phillip Kerr’s 1994 spellbinding novel A Philosophical Investigation, the medical test to which the protagonist refers is a functional brain scan based on positron emission tomography. It is used to run large studies of male and female brains and, following a lead suggested by animal studies, has been used to identify rare cases of human male subjects who lack the ventral medial nucleus. This nucleus, in the experiment, is hypothesized to inhibit the activity of the sexually dimorphic nucleus, a (...) preoptic area of the male brain believed to be a repository of male aggressive response. Prior research, we learn from the plot, shows that 3 in 100,000 human males are VMN-negative. Thirty percent of those affected are believed to be in prison or to have a criminal record; 70% are believed to stabilize levels of aggression by producing increased levels of estrogen. Identities of subjects participating in the brain scan studies are protected through the conversion of real names to those of famous figures of the past — Bertrand Russell, Charles Dickens. Those for whom results are unfavorable are recontacted, and they are offered counseling. (shrink)

Mit den Fortschritten im Bereich der psychiatrisch-genetischen Forschung gehen auch intensive Diskussionen bezüglich der daraus erwachsenden Implikationen einher. Hoffnungen wie Befürchtungen gegenüber der neuen Technologie und deren Folgen werden gleichermaßen zum Ausdruck gebracht. Über die Einstellung der Bevölkerung und insbesondere der Patienten mit affektiven oder schizophrenen Erkrankungen und ihrer Angehörigen in Deutschland war bisher allerdings wenig bekannt. Daher führten wir im Rahmen des Deutschen Humangenomprojektes erstmals eine Studie durch, um die Einstellungen und ihre beeinflussenden Faktoren zu erfassen. Wir entwickelten einen (...) Fragebogen zur Erfassung der Erwartungen, Hoffnungen und Befürchtungen sowie der die Einstellung beeinflussenden Faktoren. Hiermit wurde eine repräsentative Stichprobe von 3077 Personen aus der Allgemeinbevölkerung am Telefon befragt. Weiterhin wurden mit 316 Patienten und 163 Angehörigen persönliche standardisierte Interviews anhand des Fragebogens durchgeführt. Die Mehrzahl der Befragten hatte eine positive Einstellung zu psychiatrisch-genetischer Forschung, äußerte jedoch gleichzeitig ethische Bedenken. Übereinstimmend waren die Befragten der Ansicht, dass Informationen aus genetischen Untersuchungen vertraulich behandelt werden sollten. Kleine, aber signifikante Unterschiede zwischen den Gruppen zeigten sich bezüglich der Einstellung zu präsymptomatischer genetischer Diagnostik. Unsere Ergebnisse weisen auf eine Ambivalenz der Befragten gegenüber der psychiatrisch-genetischen Forschung und Untersuchung hin: Neben einer überwiegend positiven Einstellung wurden auch moralische Bedenken geäußert. (shrink)