Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

In Genesis 27 Jacob is depicted as lying to Isaac. Jacob, however, was held in Christian tradition to be both a moral exemplar and to be speaking prophetically in this episode with his father. This raises the question of how Doctors of the Church such as St. Augustine and St. Thomas Aquinas were able reconcile these interpretive commitments with their stance on the intrinsically disordered nature of lying. In examining their resolution of this tension, we discover an important exegetical distinction (...) for interpreting troubling words as nevertheless being divinely inspired. Yet, it is only in light of another interpretive distinction, recently highlighted by Nicholas Lombardo OP, that we can both hold to the inspired nature of Jacob's words and also a natural reading of the account in Genesis 27. The detailed examination of Genesis 27 by both Augustine and Aquinas is an important case study for understanding how we can interpret troubling language as still being the word of God. This undertaking, spanning centuries between Augustine and Aquinas, is now taken one step further thanks to the exegetical proposal of Fr. Lombardo. (shrink)

Public education is not just a way to organise and fund education. It is also the expression of a particular ideal about education and of a particular way to conceive of the relationship between education and society. The ideal of public education sees education as an important dimension of the common good and as an important institution in securing the common good. The common good is never what individuals or particular groups want or desire, but always reaches beyond such particular (...) desires towards that which societies as a whole should consider as desirable. This does, of course, put the common good in tension with the desires of individuals and groups. Neo-liberal modes of governance have, over the past decades, put this particular educational set up under pressure and have, according to some, eroded the very idea of the common good. This set of contributions reflects on this state of affairs, partly through an exploration of the idea of publicness itself – how it can be rearticulated and regained – and partly through reflections on the current state of education in the ‘north’ and the ‘south.’. (shrink)

Existing social disparities in the United States are inconsistent with the promise of democracy; therefore, there was a need for critical conceptualization of the first principles that undergird American democracy and the genesis of democratic social change in America. This constructivist grounded theory study aimed to construct a grounded theory that provides an understanding of the process of American democratic social change as it emerged from the nation’s founding documents. A post hoc polytheoretical framework including Foucault’s, Bourdieu’s, and Marx and (...) Engels’s theories of power was used to understand power dynamics. The research question focused on understanding the process of democratic social change in America. The sample comprised the Articles of Confederation, the U.S. Declaration of Independence, The Federalist Papers, and the U.S. Constitution. The documents were retrieved from the National Archives and Library of Congress. The data analysis plan incorporated successive comparison, situational and dramaturgical analysis, deconstruction, and perspective taking as strategies. The result was the construction of a democratic social change process theory preceded by five grounded theories: (a) first principles of democracy, (b) first principles of democracy conceptual framework, (c) socio-ethical principles of democracy, (d) demoralizing process, and (e) either-or approach to democracy. Positive social change implications include applying a democratic social change process to future social change endeavors across domains and levels of analysis, a normative framework for a republican form of government, and a tool to analyze and minimize the latent consequences of social justice policies. (shrink)

Drawing from ethnographic, empirical, and historical / cultural perspectives, we examine the extent to which visual aspects of music contribute to the communication that takes place between performers and their listeners. First, we introduce a framework for understanding how media and genres shape aural and visual experiences of music. Second, we present case studies of two performances, and describe the relation between visual and aural aspects of performance. Third, we report empirical evidence that visual aspects of performance reliably influence perceptions (...) of musical structure and affective interpretations of music. Finally, we trace new and old media trajectories of aural and visual dimensions of music, and highlight how our conceptions, perceptions and appreciation of music are intertwined with technological innovation and media deployment strategies. (shrink)

In an international survey of rationing we have found that European physicians encounter scarcity-related ethical difficulties, and are dissatified with the resolution of many of these cases. Here we further examine survey results to explore whether ethics support services would be potentially useful in addressing scarcity related ethical dilemmas. Results indicate that while the type of help offered by ethics support services was considered helpful by physicians, they rarely referred difficulties regarding scarcity to ethics consultation. We propose that ethics consultants (...) could assist physicians by making the process less difficult, and by contributing to decisions being more ethically justifiable. Expertise in bringing considerations of justice to bear on real cases could also be useful in recognising an unjust limit, as opposed to a merely frustrating limit. Though these situations are unlikely to be among the most frequently referred to ethics support services, ethics consultants should be prepared to address them. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as clinical ethics committees (...) (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P = 0.001), or who had had ethics courses in medical school (P = 0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensititity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available. (shrink)

More than 50 years ago, Glaser and Strauss constructed the grounded theory methodology to develop substantive and formal data-grounded theories. Grounded theory is a rigorous methodology for generating theory grounded in data. It incorporates compare-and-contrast and abductive reasoning as its intellectual engine. Whenever one of these cognitive processes is engaged, so is the other. However, there is a need for a systematic means to assess how rigorous the grounded theory research process was employed. This paper aims to start this conversation (...) among methodologists and practitioners by proposing three criteria to evaluate the trustworthiness of grounded theories’ research process. Grounded theory studies ought to include abductive discoveries, the results of variation-finding, and Tilly’s comparison framework. Examples from Forde’s macro-level grounded theory will be used to demonstrate the significance of adding evaluation criteria to assess the rigor of the research process. (shrink)

René Descartes is best remembered today for writing 'I think, therefore I am', but his main contribution to the history of ideas was his effort to construct a philosophy that would be sympathetic to the new sciences that emerged in the seventeenth century. To a great extent he was the midwife to the Scientific Revolution and a significant contributor to its key concepts. In four major publications, he fashioned a philosophical system that accommodated the needs of these new sciences and (...) thereby earned the unrelenting hostility of both Catholic and Calvinist theologians, who relied on the scholastic philosophy that Descartes hoped to replace. His contemporaries claimed that his proofs of God's existence in the Meditations were so unsuccessful that he must have been a cryptic atheist and that his discussion of skepticism served merely to fan the flames of libertinism. This is the first biography in English that addresses the full range of Descartes' interest in theology, philosophy and the sciences and that traces his intellectual development through his entire career. (shrink)

All lives contain negative events, but how we think about these events differs across individuals; negative events often include positive details that can be remembered alongside the negative, and the ability to maintain both representations may be beneficial. In a survey examining emotional responses to the 2013 Boston Marathon bombings, the current study investigated how this ability shifts as a function of age and individual differences in initial experience of the event. Specifically, this study examined how emotional importance, involvement, and (...) self-reported surprise upon hearing about the event related to the tendency to report focusing on the negative and positive aspects of the bombings. Structural equation models revealed that while greater emotional importance and surprise were associated with a greater focus on negative elements, involvement and age were associated with increased consideration of positive aspects. Further, emotional importance was more strongly related to an increased focus on negative aspects for young adults and an increased focus on positive aspects for older adults, highlighting a tendency for older adults to enhance positive features of an otherwise highly negative event. (shrink)

An important, but relatively neglected, aspect of human theory of mind is emotion inference: understanding how and why a person feels a certain why is central to reasoning about their beliefs, desires and plans. The authors review recent work that has begun to unveil the structure and determinants of emotion inference, organizing them within a unified probabilistic framework.

We examined whether facial expressions of performers influence the emotional connotations of sung materials, and whether attention is implicated in audio-visual integration of affective cues. In Experiment 1, participants judged the emotional valence of audio-visual presentations of sung intervals. Performances were edited such that auditory and visual information conveyed congruent or incongruent affective connotations. In the single-task condition, participants judged the emotional connotation of sung intervals. In the dual-task condition, participants judged the emotional connotation of intervals while performing a secondary (...) task. Judgements were influenced by melodic cues and facial expressions and the effects were undiminished by the secondary task. Experiment 2 involved identical conditions but participants were instructed to base judgements on auditory information alone. Again, facial expressions influenced judgements and the effect was undiminished by the secondary task. The results suggest that visual aspects of music performance are automatically and preattentively registered and integrated with auditory cues. (shrink)

Background: Ethics support services are growing in Europe to help doctors in dealing with ethical difficulties. Currently, insufficient attention has been focused on the experiences of doctors who have faced ethical difficulties in these countries to provide an evidence base for the development of these services.Methods: A survey instrument was adapted to explore the types of ethical dilemma faced by European doctors, how they ranked the difficulty of these dilemmas, their satisfaction with the resolution of a recent ethically difficult case (...) and the types of help they would consider useful. The questionnaire was translated and given to general internists in Norway, Switzerland, Italy and the UK.Results: Survey respondents ranged in age from 28 to 82 years, and averaged 25 years in practice. Only a minority reported having access to ethics consultation in individual cases. The ethical difficulties most often reported as being encountered were uncertain or impaired decision-making capacity , disagreement among caregivers and limitation of treatment at the end of life . The frequency of most ethical difficulties varied among countries, as did the type of issue considered most difficult. The types of help most often identified as potentially useful were professional reassurance about the decision being correct , someone capable of providing specific advice , help in weighing outcomes and clarification of the issues . Few of the types of help expected to be useful varied among countries.Conclusion: Cultural differences may indeed influence how doctors perceive ethical difficulties. The type of help needed, however, did not vary markedly. The general structure of ethics support services would not have to be radically altered to suit cultural variations among the surveyed countries. (shrink)

Multidisciplinary healthcare committees meet regularly to discuss patients’ candidacy for emerging functional neurosurgical procedures, such as Deep Brain Stimulation . Through debate and discussion around the surgical candidacy of particular patients, functional neurosurgery programs begin to mold practice and policy supported both by scientific evidence and clear value choices. These neurosurgical decisions have special considerations not found in non-neurologic committees. The professional time used to resolve these conflicts provides opportunities for the emergence of careful, ethical practices simultaneous with the expansion (...) of therapy applications. (shrink)

Ever since its inception, the theory of evolution has been reified into an “-ism”: Darwinism. While biologists today tend to shy away from the term in their research, the term is still actively used in the broader academic and societal contexts. What exactly is Darwinism, and how precisely are its various uses and abuses related to the scientific theory of evolution? Some call for limiting the meaning of the term “Darwinism” to its scientific context; others call for its abolition; yet (...) others claim the term refers to a myth-like story. In this paper we propose a conceptually grounded overview of the term. We show how the scientific dimension of Darwinism feeds into, and is influenced by, guises of Darwinism as a methodology and as an ethically and politically charged “worldview”. The full meaning of Darwinism, as well as how this meaning has changed over time, can only be understood through the complex interaction between these three dimensions. (shrink)

© 2014 Taylor Francis. The Centers for Disease Control and Prevention recommends routine human immunodeficiency virus testing of every client presenting for services in venues where HIV prevalence is high. Because older adults have particularly poor prognosis if they receive their diagnosis late in the course of HIV disease, any screening provided to younger adults in these venues should also be provided to older adults. We examined aging-related disparities in recent and ever HIV testing in a probability sample of at-risk (...) adults seeking services in needle exchange sites, sexually transmitted disease clinics, and Latino community clinics that provide HIV testing. Using multiple logistic regression with generalized estimating equations, we estimated associations between age category and each HIV testing outcome. Even after controlling for covariates such as recent injection drug use, older adults had 40% lower odds than younger adults did of having tested in the past 12 months or ever. Aging-related disparities in HIV testing exist among clients of these high HIV prevalence venues and may contribute to known aging-related disparities in late diagnosis of HIV infection and poor long-term prognosis. (shrink)

BackgroundObtaining consent has become a standard way of respecting the patient’s rights and autonomy in clinical research. Ethical guidelines recommend that the child’s parent/s or authorised legal guardian provides informed consent for their child’s participation. However, obtaining informed consent in paediatric research is challenging. Parents become vulnerable because of stress related to their child’s illness. Understanding the views held by guardians and researchers about the consent process in Malawi, where there are limitations in health care access and research literacy will (...) assist in developing appropriate consent guidelines.MethodsWe conducted 20 in-depth interviews with guardians of children and research staff who had participated in paediatric clinical trial and observational studies in acute and non-acute settings in the Southern Region of Malawi. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Interviews were compared across studies and settings to identify differences and similarities in participants’ views about informed consent processes. Data analysis was facilitated by NVIVO 11 software.ResultsAll participants across study types and settings reported that they associated participating in research with therapeutic benefits. Substantial differences were noted in the decision-making process across study settings. Guardians from acute studies felt that the role of their spouses was neglected during consenting, while staff reported that they had problems obtaining consent from guardians when their partners were not present. Across all study types and settings, research staff reported that they emphasised the benefits more than the risks of the study to participants, due to pressure to recruit. Participants from non-acute settings were more likely to recall information shared during the consent process than participants in the acute setting.ConclusionThe health care context, culture and research process influenced participants’ understanding of study information across study types and settings. We advise research managers or principal investigators to define minimum requirements that would not compromise the consent process and conduct study specific training for staff. The use of one size fits all consent process may not be ideal. More guidance is needed on how these differences can be incorporated during the consent process to improve understanding and delivery of consent.Trial registration Not applicable. (shrink)

Seeking to renew an ancient companionship between the philosophical andthe religious, this book’s meditative chapters dwell on certain elementalexperiences or happenings that keep the soul alive to the enigma of the divine.William Desmond engages the philosophical work of Pascal, Kant, Hegel,Nietzsche, Shestov, and Soloviev, among others, and pursues with a philosophicalmindfulness what is most intimate in us, yet most universal: sleep, poverty,imagination, courage and witness, reverence, hatred and love, peace and war.Being religious has to do with that intimate universal, (...) beyond arbitrarysubjectivism and reductionist objectivism.In this book, he attempts to look at religion with a fresh and open mind,asking how philosophy might itself stand up to some of the questions posed toit by religion, not just how religion might stand up to the questions posed to it byphilosophy. Desmond tries to pursue a new and different policy, one faithfulto the light of this dialogue. (shrink)

Archaeological excavations carried out at Pentridge Prison discovered the ruins and foundations of three panopticon exercise yards. This paper details the scope and observations of the excavation program and discusses the influence of Jeremy Bentham’s panopticon model on penal reform and prison design in Australia in the middle of the 19th Century.

Science can reveal or conceal the breathtaking wonders of creation. On one hand, knowledge of the natural world can open us up to greater love for the Creator, give us the means of more neighborly care, and fill us with ever-deepening astonishment. On the other hand, knowledge feeding an insatiable hunger for epistemic mastery can become a means of idolatry, hubris, and damage. Crucial to world-respecting science is the role of wonder: curiosity, perplexity, and astonishment. In this volume, philosopher William (...) Desmond explores the relation of the different modes of wonder to modern science. Responding to his thought are twelve thinkers across the domains of science, theology, philosophy, law, poetry, medicine, sociology, and art restoration. (shrink)

Ford's book on the question of when human personhood begins, When Did I Begin? Conception of the Human Individual in History, Philosophy and Science (Cambridge University Press; 1988), is reviewed by Michael J. Coughlan in this issue of Bioethics. Here Ford responds to Coughlan's review, focusing on three topics: the importance of rationality for personhood, how far back one can trace the ontological identity of what is indisputably a human individual and human person, and the difference between the (...) awareness of the reality of human persons and the varying degrees of perception of their value in the family and society. (shrink)

Existing social disparities in the United States are inconsistent with Lincoln’s promise of democracy; therefore, there is a need for a critical conceptualization of the first principles that undergird American democracy and the genesis of democratic social change in America. This study aimed to construct a grounded theory that provides an understanding of the process of American democratic social change. The result was the construction of two frameworks: the demoralization process that triggers social change, and a formal grounded theory that (...) could explain democratic social change endeavors across different domains and levels of analysis. This democratic social change grounded theory answers the research question: How do the principles of the American founding documents provide an understanding of the process of American democratic social change? (shrink)

The polarities of democracy framework is used to achieve human emancipation by simultaneously managing multiple paradoxes by employing Johnson’s polarity management as the conceptual framework. Although Johnson’s framework may be appropriate for managing other tension-dependent pairs, it is less suitable for managing multiple democratic values when the goal is human emancipation and sustainable democratic social change. Managing multiple polarities is exacerbated by the problem-shifting and problem-creation effect inherent in a tension-driven framework. The aim was to develop a constructivist grounded theory (...) to answer the research question: How can the first principles of democracy be used to reduce dynamic tension and achieve human emancipation? This gap has been filled by a parsimonious conceptual framework based on three democratic principles: human dignity, fairness, and knowledge. The principles of democracy conceptual framework can synthesize the tension between democratic values in order to manage, plan, and evaluate democratic social change initiatives. (shrink)

BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical (...) policy.MethodsEighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.ResultsJurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.ConclusionsInformed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data. (shrink)

Objective: To develop an approach for seeking informed consent to examine tissues retained from a previous study of sudden infant death syndrome as part of a study on asthma, and to document responses and participation rate.Design: Pilot open-ended approach to 10 volunteer SIDS parents, followed by staged approach to seek consent from the target SIDS families for the asthma study.Participants: Parents of SIDS infants known to SIDS and Kids Victoria and parents of SIDS infants from the 1991–2 SIDS in Victoria (...) case–control study.Main outcomes: Qualitative responses of the piloted parents and study parents, and participation rates.Results: The pilot group responses were used to refine the written material to be provided. Of the 72 families for which contact details were available, 45 gave verbal consent for contact by the Victorian Institute of Forensic Medicine regarding the asthma study, three refused and 24 did not respond to two letters. Thirty-three completed consent forms, all positive for participation in the asthma study, giving a positive response rate of 73% .Conclusions: The use of postmortem tissue for research is acceptable to the next of kin when an approach is sensitive to their concerns and needs and is made by experienced counsellors from a familiar organisation. Despite the painful memories evoked by the approach of the research group, the acceptance rate among those who could be contacted was high. (shrink)