Is consent necessary prior to the initiation of a specific clinical ethics consultation? This is not a question that has received much attention despite the fact that the issue of consent is one of the earliest considerations associated with bioethics. Perhaps this is because of how clinical ethics consultation, as a formidable clinical practice, came into being. Specifically, although the place and time of its conception is not readily identifiable, it is not unreasonable to say it was born on March (...) 31, 1976, when the New Jersey Supreme Court stated, in its Quinlan decision, that consultation would be necessary with “the hospital ‘Ethics Committee’ or like body of the institution in which Karen is then hospitalized. [And i]f that consultative body agrees that there is no reasonable possibility of Karen's ever emerging from her present comatose condition [then her] life-support system may be withdrawn.”. (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...

Against the background assumptions that knowing what clinical ethics consultation represents to those with whom ethics consultants work most closely is a necessary component for being responsible in the practice of ethics consultation, and the complexities of soliciting and understanding colleague evaluations require another inherent responsibility for the methods by which ethics consultations are evaluated, in this article we report our experience soliciting, analyzing, and trying to understand retrospective evaluations of our Clinical Ethics Consultation Service. These evaluations were collected through (...) a quality assessment effort at our institution. Drawing from the qualitative elements of our survey instrument, we describe unexpected variations among the requests for ethics consultation and the retrospective reports from those colleagues making the requests. Focusing on just one aspect – the reason for request – raised several core questions about how we should evaluate those retrospective reports, what could be learned from the differences that we were now encountering, and what we could learn about the process of evaluating our practices. Working through these questions, we suggest several issues to consider in ongoing efforts to describe and evaluate clinical ethics consultation: the role of time and memory in evaluating retrospective evaluations, the importance of attending to the language of moral shift or disruption with which our colleagues describe their experiences, and how to understand the role of ethics consultation in creating ‘moral space’ for colleagues to process their moral experiences. (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)

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)

In this essay Harry Boyte and Margaret Finders argue that addressing the “shrinkage” of education and democracy requires acting politically to reclaim and augment Deweyan agency-focused concepts of democracy and education. Looking at agency from the vantage of civic studies, which advances a politics of agency — a citizen politics that is different from ideological politics — and citizens as cocreators of political communities, Boyte and Finders explore the technocratic trends that have eclipsed agency. These disempower educators, students, (...) and communities. Using the case study of the youth empowerment initiative Public Achievement and its translation into the Special Education Program and partnerships of Augsburg College, the authors conclude with an examination of how agentic practices have survived in “shadow spaces” in schools, how such spaces might be turned into “free spaces” for democratic change, and how teacher education needs to prepare “citizen teachers” as well as promoting pedagogies of empowerment. These suggest grounds for a movement of hope and democratic change. (shrink)

Volume 19, Issue 10, October 2019, Page 43-46.

Volume XXIX of Studies in Contemporary Jewry takes its title from a joke by Groucho Marx: "I don't want to belong to any club that will accept me as a member." The line encapsulates one of the most important characteristics of Jewish humor: the desire to buffer oneself from potentially unsafe or awkward situations, and thus to achieve social and emotional freedom. By studying the history and development of Jewish humor, the essays in this volume not only provide nuanced accounts (...) of how Jewish humor can be described but also make a case for the importance of humor in studying any culture. A recent survey showed that about four in ten American Jews felt that "having a good sense of humor" was "an essential part of what being Jewish means to them," on a par with or exceeding caring for Israel, observing Jewish law, and eating traditional foods. As these essays show, Jewish humor has served many functions as a form of "insider" speech. It has been used to ridicule; to unite people in the face of their enemies; to challenge authority; to deride politics and politicians; in America, to ridicule conspicuous consumption; in Israel, to contrast expectations of political normalcy and bitter reality. However, much of contemporary Jewish humor is designed not only or even primarily as insider speech. Rather, it rewards all those who get the punch line. A Club of Their Own moves beyond general theorizing about the nature of Jewish humor by serving a smorgasbord of finely grained, historically situated, and contextualized interdisciplinary studies of humor and its consumption in Jewish life in the modern world. (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.

Along with the growing utilization of the total artificial heart comes a new set of ethical issues that have, surprisingly, received little attention in the literature: How does one apply the criteria of irreversible cessation of circulatory function given that a TAH rarely stops functioning on its own? Can one appeal to the doctrine of double effect as an ethical rationale for turning off a TAH given that this action directly results in death? And, On what ethical grounds can a (...) physician turn off a TAH in view of the fact that either the intent of such an action or the outcome is always, and necessarily, death? The aim of this article is not to answer these questions but to highlight why these questions must be explored in some depth given the growing use of TAH technology. (shrink)

“I beg of you, Doctor, please don’t let Dr. Moore see my mother again. My sisters and I do not want him talking with us anymore.”So concluded my first conversation with Samir Zadeh. Our meeting had been purely accidental; as I walked onto the elevator going down from the Surgical ICU, he and one of his sisters were already on, coming down from another one of our hospital’s ICUs, from a floor above. Samir was a man in his early 50s, (...) and his sister, whom I would learn was actually a few years older, appeared younger than he. They were talking quietly when the doors opened, but as is often the case in elevators, especially in a hospital, as soon as I entered, their conversation stopped. We rode down to the bottom floor in silence. As we exited, I let them go first, a courtesy I had been taught by my parents, and they both thanked me, in the usual social way, and walked out into the lobby and then out of the building. I walked the same way.It was when we were about 25 feet from the building that Mr. Zadeh and his sister stopped, so that I caught up to them. As I did, Mr. Zadeh, a large man, maybe 6 feet tall and 250 pounds, with thinning hair and a well-groomed mustache, turned and said my name aloud, “Dr. Finder, may you be so kind as to talk?”. (shrink)

Few could disagree with the starting premise in, “Strangers at the Benchside: Research Ethics Consultation” (Cho et al. 2008). Over the past 40 years, the efforts for addressing the breadth and dep...

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)

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)

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...

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)

Clinical ethics consultants (CECs) work in complex environments ripe with multiple types of expectations. Significantly, some are due to the perspectives of professional colleagues and the patients and families with whom CECs consult and concern how CECs can, do, or should function, thus adding to the moral complexity faced by CECs in those particular circumstances. We outline six such common expectations: Ethics Police, Ethics Equalizer, Ethics Superhero, Ethics Expediter, Ethics Healer or Ameliorator, and, finally, Ethics Expert. Framed by examples of (...) requests for ethics consultation that illustrate each kind, along with brief descriptions, we argue that while these expectations ought to be resisted for clear and practical reasons, they also create opportunities for CECs to articulate, educate, and ultimately be responsible to the professional demands of clinical ethics work. Recognizing, acknowledging, and at times resisting those expectations thus become key activities and responsibilities in the performance of ethics consultation. (shrink)

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.

There are at least two fundamental questions in medical ethics: What constitutes the ethical components associated with medical practice?; and How are these components realized in daily medical practice? This dissertation is concerned with question . In particular, focus is on daily medical linguistic practices of physicians. Due to the entailment of question in question , however, a brief answer for is also provided. Specifically, it is argued that a tripartite theoretical ethical framework is associated with medical practice, consisting of (...) consequentialist, deontological, and virtue ethics components. Turning towards daily medical linguistic practices, two daily medical linguistic practices are examined: ways of referring to patients and referring to disease. Both are addressed as they occur in the context of physician-physician dialogues in a clinical, hospital setting. In light of a background argument concerning the theoretical connection between language, worldview, and ethical perspective, in which language is shown to play a role in defining both worldview and ethical perspective, the ethical perspective of physicians qua medical language users is addressed. It is suggested that although medical practice has the tripartite normative ethical foundation in theory, the practical influence of medical language used for diagnosis is to impose an essentially consequentialist framework within which patients are conceived. Consistent with this limited ethical framework, disease language is noted to suggest connotations of certainty. In light of the ambiguous and uncertain character of medical encounters between physicians and patients, the implication of certainty by disease language is problematic. Likewise, the limited, essentially consequentialist perspective of physicians is inappropriate. Physicians must therefore recognize the limitations of disease language and refrain from solely using the kind of medical language which conceptually reduces patients to mere disease loci. Physicians will thus be better able to account for the ethical implications of medical practice. (shrink)

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)

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)

Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes or whether or not to utilize particular interventions, both of which about most laypersons know little and, more (...) importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility—creating a burden for which most patients are unprepared—and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients and physicians for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue—or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity. (shrink)

Self-regulation in early childhood is an important predictor of success across a variety of indicators in life, including health, well-being, and earnings. Although conceptually self-regulation has been defined as multifaceted, previous research has not investigated whether there is conceptual and empirical overlap between the factors that comprise self-regulation or if they are distinct. In this study, using a bifactor model, we tested the shared and unique variance among self-regulation constructs and prediction to pre-academic and social-emotional skills. The sample included 932 (...) preschool children, their parents, and their teachers in the United States. Children’s self-regulation was assessed using measures of executive function, behavioral self-regulation, and emotion regulation. The bifactor model demonstrated a common overarching self-regulation factor, as well as distinct executive function and emotion regulation factors. The common overarching self-regulation factor and executive function predicted children’s pre-academic and social-emotional skills. The emotion regulation factor predicted children’s social-emotional skills. Identifying the shared and unique aspects of self-regulation may have important implications for supporting children’s regulatory skills as well as their success in school. (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)

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.

Some patients who are dependent on extracorporeal membrane oxygenation (ECMO) are alert and retain capacity to participate in decision-making, including decisions regarding whether to continue life...

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)

Dahlman analyzes the case with a version of Bayes’ rule that can handle dependencies. He claims that his method can help a fact finder avoid various kinds of bias in probabilistic reasoning, and he identifies occurrences of these biases in the analyzed decision. While a mathematical analysis may give a false impression of objectivity to fact finders, Dahlman claims as a benefit that it forces to make assumptions explicit, which can then be scrutinized.

People sometimes disagree about who owns which objects, and these ownership dilemmas can lead to costly disputes. We investigate the cognitive mechanisms underlying people's judgments about finder versus landowner cases, in which a person finds an object on someone else's land. We test psychological hypotheses motivated directly by three major principles that govern these cases in the law. The results show that people are more likely to favor the finder when the object is in a public space compared to a (...) private space. We find mixed support for the hypothesis that people are less likely to favor a finder who is employed by the landowner. Last, we find no support for the hypothesis that people are more likely to favor finders for objects located above ground compared to below ground. We discuss implications for psychological theories of ownership and potential applications to property law. (shrink)

In procedural-law scholarship as well as in the theoretical analysis of the notion of proof as a result of the joint assessment of all items of evidence introduced in a trial, reference is frequently made to notions such as the conviction, belief, or certainty of a judge or a jury member about what happened. All these notions underscore the mental states involved in the process of determining the facts on the part of a judge or a jury. In this analysis, (...) I look at the links between beliefs and the justification in the findings of fact provided by the judge or jury in her or its verdict. (shrink)

The human ability to flexibly discover alternatives without fixating on a known solution supports a variety of human creative activities. Previous research has shown that people who discover an alternative procedure relax their attentional bias to information regarding the known solutions just prior to the discovery. This study examined whether the difference in the distribution of attention between the finders and non-finders of the alternative procedure is observed from the phase of solving the problem using the trained procedure. (...) We evaluated the characteristics of the finders' distribution of attention in situations where problem solving using a trained procedure was successful. This aspect has been little examined in previous research. Our study obtained empirical evidence for the fact that, compared to non-finders, finders pay more attention to information unrelated to the trained procedure acquired through knowledge and experience, even time when using a trained procedure. We also confirmed that this difference does not exist from the beginning of the task, but emerges during repeated use of familiar procedures. These findings indicate that in order to find an alternative procedure, one should not only divert attention from a familiar procedure just before the discovery but also pay a certain amount of attention to information unrelated to the familiar procedure even when the familiar procedure is functioning well. (shrink)