In the clinical setting, questions of medical ethics raise a host of perplexing problems, often complicated by conflicting perspectives and the need to make immediate decisions. In this volume, bioethicists and physicians provide a nuanced, in-depth approach to the difficult issues involved in bioethics consultation. Addressing the needs of researchers, clinicians, and other health professionals on the front lines of bioethics practice, the contributors focus primarily on practical concerns -- whether ethics consultation is best done by individuals, teams, or committees (...) how an ethics consult service should be structured the need for institutional support and techniques and programs for educating and training staff -- without neglecting more theoretical considerations, such as the importance of character or the viability of organizational ethics. (shrink)

Exegesis, with text, of the classical treatise expounding the philosophy of Chaitanya school in Vaishnavism.

In 2008, researchers reported that Timothy Brown , a man with HIV infection and leukemia, received a stem-cell transplant that removed HIV from his body as far as can be detected. In 2013, an infant born with HIV infection received anti-retroviral treatment shortly after birth, but was then lost to the health care system for the next six months. When tested for HIV upon return, the child had no detectable viral load despite cessation of treatment. These remarkable clinical developments have (...) helped reinvigorate the field of ‘HIV cure’ research. (shrink)

Furthermore, adults with decision-making capacity, including pregnant women, can currently accept interventions with moderate net risks for themselves in other settings (e.g., open f...

The past few years have seen greater attention directed toward important procedural elements associated with ethics consultation. Examples include considerations about how best to document consulta...

Several inquires about healthcare over the past several decades have shown that the evolution of healthcare practices exhibit their own microcosm of local and political influences. Likewise, other studies have shown clearly the ways in which both external and internal institutional factors establish the sectors within which healthcare is delivered. Although restrictions have always been present in some form, it seems obvious that whatever the precise form of healthcare delivery that results from current changes in its organization, there are going (...) to be broader restrictions not only on the choices that providers will be able to make about individual patients' care and needs, but also regarding the character of their clinical judgments. Indeed, there are already reports of instances where physicians' contracts with managed care organizations forbid them to disclose the existence of services not covered by a plan. (shrink)

Clinical ethics literature typically presents ethics consultations as having clear beginnings and clear ends. Experience in actual clinical ethics practice, however, reflects a different characterization, particularly when the moral experiences of ethics consultants are included in the discussion. In response, this article emphasizes listening and learning about moral experience as core activities associated with clinical ethics consultation. This focus reveals that responsibility in actual clinical ethics practice is generated within the moral scope of an ethics consultant's activities as she or (...) he encounters the unique and specific features that emerge from interactions with a specific patient, or family, or practitioner within a given situation and over time. A long-form narrative about an ethics consultant's interactions is interwoven with a more didactic discussion to highlight the theme of responsibility and to probe questions that arise regarding follow-up within the practice of clinical ethics consultation. (shrink)

While many have suggested that to withdraw medical interventions is ethically equivalent to withholding them, the moral complexity of actually withdrawing life supportive interventions from a patient cannot be ignored. Utilizing interplay between expository and narrative styles, and drawing upon our experiences with patients, families, nurses, and physicians when life supports have been withdrawn, we explore the changeable character of boundaries in end-of-life situations. We consider ways in which boundaries imply differences – for example, between cognition and performance – and (...) how the encounter with boundaries can generate altered meanings important for understanding decisions and actions in these contexts. We conclude that the reliance on mere roles to support the moral weight of withdrawing medical interventions is inadequate. Roles that lead us to such moments are exceeded by the responsibility encountered in such moments. And here, we suggest, is the momentous character of withdrawal: it presents the grave astonishment, the trembling awe, in the not-being-there of the other in death. (shrink)

This Open Access book about the Zadeh Project demonstrates and explores a core question in clinical ethics: how can ethics consultants be accountable in the face of a robust plurality of ethical standpoints, especially those that underwrite practices and methods for doing ethics consultation as well as those viewpoints and values encountered in daily clinical ethics practice? Underscoring this question is the recognition that the field of clinical ethics consultation has arrived at a crucial point in its maturation. Many efforts (...) are underway to more formally “professionalize” the field, with most aimed toward stabilizing a specific set of institutional considerations. Stretched between these institutional and practical initiatives resides a crucial set of of ethical considerations, chief among them the meaning and scope of responsibility for clinical ethics consultants. Developed around a long-form case scenario, the Zadeh Project provides a multi-layered series of “peer-reviews”: critique of the actions of the case scenario’s ethics consultant; reflection on clinical ethics method; examination of the many ways that commitments to method and practice can, and do, intersect, overlap, and alter one another. The design and format of this book thus models a key element for clinical ethics practice: the need and ability to provide careful and thoughtful explanation of core moral considerations that emerge among diverse standpoints. Specifically designed for those studying to become and those who are ethics consultants, this book, with its innovative and multi-layered approach, allows readers to share a peer-review-like experience that shows accountability to be what it is, an ethical, not merely procedural or administrative, undertaking. (shrink)

(2001). Activities, Not Rules: The Need for Responsive Practice (On the Way Toward Responsibility) The American Journal of Bioethics: Vol. 1, No. 4, pp. 52-54.

An adequate understanding of the ubiquitous practice of mechanistic explanation requires an account of what Craver termed “constitutive relevance.” Entities or activities are constitutively relevant to a phenomenon when they are parts of the mechanism responsible for that phenomenon. Craver’s mutual manipulability account extended Woodward’s account of manipulationist counterfactuals to analyze how interlevel experiments establish constitutive relevance. Critics of MM argue that applying Woodward’s account to this philosophical problem conflates causation and constitution, thus rendering the account incoherent. These criticisms, we (...) argue, arise from failing to distinguish the semantic, epistemic, and metaphysical aspects of the problem of constitutive relevance. In distinguishing these aspects of the problem and responding to these critics accordingly, we amend MM into a refined epistemic criterion, the “matched interlevel experiments” account. Further, we explain how this epistemological thesis is grounded in the plausible metaphysical thesis that constitutive relevance is causal betweenness. (shrink)

BackgroundCentral to ethically justified clinical trial design is the need for an informed consent process responsive to how potential subjects actually comprehend study participation, especially study goals, risks, and potential benefits. This will be particularly challenging when studying deep brain stimulation and whether it impedes symptom progression in Parkinson’s disease, since potential subjects will be Parkinson’s patients for whom deep brain stimulation will likely have therapeutic value in the future as their disease progresses.MethodAs part of an expanded informed consent process (...) for a pilot Phase I study of deep brain stimulation in early stage Parkinson’s disease, an ethics questionnaire composed of 13 open-ended questions was distributed to potential subjects. The questionnaire was designed to guide potential subjects in thinking about their potential participation.ResultsWhile the purpose of the study (safety and tolerability) was extensively presented during the informed consent process, in returned responses 70 percent focused on effectiveness and 91 percent included personal benefit as potential benefit from enrolling. However, 91 percent also indicated helping other Parkinson’s patients as motivation when considering whether or not to enroll.ConclusionsThis combination of responses highlights two issues to which investigators need to pay close attention in future trial designs: (1) how, and in what ways, informed consent processes reinforce potential subjects’ preconceived understandings of benefit, and (2) that potential subjects see themselves as part of a community of Parkinson’s sufferers with responsibilities extending beyond self-interest. More importantly, it invites speculation that a different paradigm for informed consent may be needed. (shrink)

Jaswal & Akhtar provide several quotes ostensibly from people with autism but obtained via the discredited techniques of Facilitated Communication and the Rapid Prompting Method, and they do not acknowledge the use of these techniques. As a result, their argument is substantially less convincing than they assert, and the article lacks transparency.

Mandating psychiatric evaluation for patients who request physician‐assisted suicide may not offer the clearcut protection from possible coercion or other abuse that proponents assert. Competence itself is a complex concept and determinations of decisionmaking capacity are not straightforward, nor is the relationship between mental illness and decisionmaking capacity in dying patients clearly understood. And casting psychiatrists as gatekeepers in end‐of‐life decisions poses risks to the profession itself.

We revisit questions about the scientific status of the pilot Phase I study of deep brain stimulation (DBS) in early stage Parkinson’s disease (PD), as well as questions about enrolling and retaining subjects. In doing so, we highlight a compelling ethical dimension reported to us by patients thinking about becoming research subjects in that study.

This chapter critically reflects on the critiques, reviews, and many proposals presented in Parts Two, Three, and Four, and provides a summary conclusion for the entire Zadeh Project. Obvious differences between experience and reporting on experience are highlighted, with particular attention to the ways such differences are detailed by the Zadeh Scenario and in our colleagues’ responses to it. In addition, we discuss a key challenge associated with clinical ethics practice and the peer review of such practice: identifying what actually (...) matters for those engaged in these kinds of activities. In each case, we argue, the work of discovering what matters to the individuals actually involved cannot be overlooked. Furthermore, that work may even be the primary ingredient to responsible conduct for both consultation and peer review. Building on this idea that responding responsibly to that which is actually encountered in clinical practice serves as a primary activity of, and thus grounds responsibility in, clinical ethics practice, we then argue that ethical analysis of Finder’s activities in the Zadeh Scenario, and for clinical ethics peer review more generally, has at least three layers: that which addresses the immediate interactions between an ethics consultant and those whom the consultant engages; that which addresses the ethics consultant’s own sense of self-responsibility; that which addresses peer reviewers’ own frames for evaluating another’s clinical ethics practice. We conclude that the Zadeh Project exemplifies what is at stake in ethics consultation and peer review. Taken as a whole, then, the Zadeh Project reveals how peer review, in acknowledgement of the responsibility to create a context for peer education, rests upon a commitment to model – and demand critical engagement with – what is held to be most worthwhile for clinical ethics practice and the field of clinical ethics consultation as a whole. (shrink)

This book represents a unique contribution to the field of clinical ethics consultation. What might seem at first glance to be an anthology, that is, a collection of independent essays, is actually more akin to a conversation, a shared engagement, a mutual undertaking. At the center of this conversation is a steadfastness, abiding and serious in its orientation – exemplified in these voices and contributions collected from colleagues – to explore, identify, and examine the actual conduct of individuals who engage (...) in ethics consultation practice. Although there is some helpful resemblance to an anthology, for example in the variety of ways these essays describe and depict a complex array of different standpoints regarding the practical and conceptual commitments in this growing field, more important to the Zadeh Project is the deliberate focus on explicating and probing the ways these commitments influence how a particular individual acting as an “ethics consultant” might understand and interpret the roles and prevalent expectations represented by those differing standpoints. In that light, and perhaps more urgently, this book is motivated by a mutual recognition that part and parcel with the responsibility of doing clinical ethics is an ongoing and clear need to describe and consider what clinical ethics consultants actually encounter when actively working with physicians, nurses, social workers, and other healthcare providers as well as with patients, families, and others who care about patients. As a contribution to that necessity of being accountable, this Project and the resulting book represent much more than merely collecting together the thoughts and perspectives of a group of colleagues from within a common field: this book is an attempt to display, to model through written text, a set of practices and what is at stake in these practices. (shrink)

Baylis, Tomlinson, and Hoffmaster each raise a number of critiques in response to Bliton's manuscript. In response, we focus on three themes we believe run through each of their critiques. The first is the ambiguity between the role of ethics consultation within an institution and the role of the actual ethics consultant in a particular situation, as well as the resulting confusion when these roles are conflated. We explore this theme by revisiting the question of What's going on? in clinical (...) ethics consultations. Moving from those issues associated with the role of the ethics consultant to those associated with the role of inquiry within the practice of ethics consultation, we then take up the serious challenge that Bliton seems shackled by the assumptions and institutional dispositions embedded in the medical culture in which he is working. This reveals the second theme, namely that there is a risk of co-optation when acting in a role that derives its legitimacy from institutional sources. Finally, we focus on an even more problematic implication stemming from the first two, namely that the focus on institutional power as the crucial factor for determining ethical significance has the effect of distorting, and perhaps obscuring, other forms of relational, interpersonal, and moral meaning. (shrink)

BackgroundFew comparative studies of clinical ethics consultation practices have been reported. The objective of this study was to explore how American and Japanese experts analyze an Alzheimer's case regarding ethics consultation.MethodsWe presented the case to physicians and ethicists from the US and Japan (one expert from each field from both countries; total = 4) and obtained their responses through a questionnaire and in-depth interviews.ResultsEstablishing a consensus was a common goal among American and Japanese participants. In attempting to achieve consensus, the (...) most significant similarity between Japanese and American ethics consultants was that they both appeared to adopt an "ethics facilitation" approach. Differences were found in recommendation and assessment between the American and Japanese participants. In selecting a surrogate, the American participants chose to contact the grandson before designating the daughter-in-law as the surrogate decision-maker. Conversely the Japanese experts assumed that the daughter-in-law was the surrogate.ConclusionOur findings suggest that consensus building through an "ethics facilitation" approach may be a commonality to the practice of ethics consultation in the US and Japan, while differences emerged in terms of recommendations, surrogate assessment, and assessing treatments. Further research is needed to appreciate differences not only among different nations including, but not limited to, countries in Europe, Asia and the Americas, but also within each country. (shrink)

Bruno and Arora (2018) present a range of important ethical issues emerging from the development of procedures for uterine transplant (UT). They approach those issues by drawing on parallels to oth...

Despite increased attention to the question of how best to evaluate clinical ethics consultations and emphasis on external evaluation, there has been little sustained focus on how we, as clinicians, make sense of and learn from our own experiences in the midst of any one consultation. Questions of how we evaluate the request for, unfolding of, and conclusion of any specific ethics consultation are often overlooked, along with the underlying question of whether it is possible to give an accurate account (...) of clinical ethics consultants’ experience as experienced by ethics consultants. Before the challenge of submitting one’s accounts or case reports for review and evaluation from others, there is an underlying challenge of understanding and evaluating our own accounts. To highlight this crucial and deeply challenging dimension of actual clinical ethics practice, we present an account of a complex consultation, explicitly constructed to engage the reader in the unfolding experience of the consultant by emphasizing the multiple perspectives unfolding within the consultant’s experience. Written in script format, the three perspectives presented—prototypical clinically descriptive account; didactically reflective and self-evidentiary account often seen in journal presentations; highly self-critical reflective account emphasizing uncertainties inherent to clinical ethics practice—reflect different manners for responding to the ways actual clinical involvement in ethics consultation practice accentuates and refocuses the question of how to understand and evaluate our own work, as well as that of our colleagues. (shrink)

Clinical ethics consultation is largely outside the scope of regulation and oversight, despite its importance. For decades, the bioethics community has been unable to reach a consensus on whether there should be accountability in this work, as there is for other clinical activities that influence the care of patients. The American Society for Bioethics and Humanities, the primary society of bioethicists and scholars in the medical humanities and the organizational home for individuals who perform CEC in the United States, has (...) initiated a two‐step quality attestation process as a means to assess clinical ethics consultants and help identify individuals who are qualified to perform this role. This article describes the process. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

In this work, Mill reflects on the struggle between liberty and authority and defends the view that “the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others.” He questions the justification for the limits of freedom of conscience and religion, freedom of speech, freedom of action, and the nature of liberalism itself. This new Broadview Edition demonstrates the ways in which Mill’s intellectual landscape differed (...) markedly from our own, while also drawing attention to the reasons why the work remains relevant and essential reading in the present day. Appendices include antecedents to Mill’s work, critical discussions by his contemporaries, and related writings by Mill. Please note: Broadview offers two separate editions of On Liberty. The Kahn edition is particularly relevant to readers who are interested in how the work is situated in the history of political philosophy, whereas the Alexander edition is recommended to those most interested in the work’s Victorian literary and social contexts. (shrink)

This project continues our interdisciplinary research into computational and cognitive aspects of narrative comprehension. Our ultimate goal is the development of a computational theory of how humans understand narrative texts. The theory will be informed by joint research from the viewpoints of linguistics, cognitive psychology, the study of language acquisition, literary theory, geography, philosophy, and artificial intelligence. The linguists, literary theorists, and geographers in our group are developing theories of narrative language and spatial understanding that are being tested by the (...) cognitive psychologists and language researchers in our group, and a computational model of a reader of narrative text is being developed by the AI researchers, based in part on these theories and results and in part on research on knowledge representation and reasoning. This proposal describes the knowledge-representation and natural-language-processing issues involved in the computational implementation of the theory; discusses a contrast between communicative and narrative uses of language and of the relation of the narrative text to the story world it describes; investigates linguistic, literary, and hermeneutic dimensions of our research; presents a computational investigation of subjective sentences and reference in narrative; studies children’s acquisition of the ability to take third-person perspective in their own storytelling; describes the psychological validation of various linguistic devices; and examines how readers develop an understanding of the geographical space of a story. This report is a longer version of a project description submitted to NSF. This document, produced in May 2007, is a L ATEX version of Technical Report 89-07 (Buffalo: SUNY Buffalo Department of Computer Science, August 1989), with slightly.. (shrink)

While tens of thousands of people across the United States serve on hospital and other healthcare ethics committees , almost no carefully prepared educational material exists for HEC members. Ethics by Committee is a one volume collection of chapters developed exclusively for this educational purpose. Experts in bioethics, clinical consultation, health law, and social psychology from across the country contribute chapters on ethics consultation, education, and policy development.

In Wilkinson v. Kitzinger, the petitioner (Susan Wilkinson) sought a declaration of her marital status, following her marriage to Celia Kitzinger in British Columbia, Canada in August 2003. The High Court refused the application, finding that their valid Canadian marriage is, in United Kingdom law, a civil partnership. In this note, I focus on Sir Mark Potter’s adjudication of the human rights issues under Articles 8, 12 and 14 of the European Convention on Human Rights (E.C.H.R.), highlighting his restatement (...) of the ideology of the ‹traditional’ family as natural, normative and desirable. I argue that this case shows that the exclusion of same sex couples from marriage is a feminist issue, because denying same sex couples access to marriage works to sediment patriarchal ideas and re-inscribe gender roles within the family. (shrink)