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...

Of Goals and Goods and Floundering About: A Dissensus Report on Clinical Ethics Consultation Content Type Journal Article Pages 275-291 DOI 10.1007/s10730-009-9101-1 Authors Jeffrey P. Bishop, Vanderbilt University Center for Biomedical Ethics and Society 2525 West End Avenue, Suite 400 Nashville Tennessee 37203 USA Joseph B. Fanning, Vanderbilt University Center for Biomedical Ethics and Society 2525 West End Avenue, Suite 400 Nashville Tennessee 37203 USA Mark J. Bliton, Vanderbilt University Center for Biomedical Ethics and Society 2525 West End Avenue, Suite (...) 400 Nashville Tennessee 37203 USA Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737 Journal Volume Volume 21 Journal Issue Volume 21, Number 3. (shrink)

Guiding our response in this essay is our view that current efforts to demarcate the role of the clinical ethicist risk reducing its complex network of authorizations to sites of power and payment. In turn, the role becomes susceptible to various ideologies—individualisms, proceduralisms, secularisms—that further divide the body from the web of significances that matter to that body, where only she, the patient, is located. The security of policy, standards, and employment will pull against and eventually sever the authorization secured (...) by authentic moral inquiry. Instead of asking “What do I need to know?”, the question animating the drive to standardize will be “What is the policy or standard?” The claims of the authors in this issue of HEC Forum confirm these suspicions. (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)

Erratum to: Echo Calling Narcissus: What Exceeds the Gaze of Clinical Ethics Consultation? Content Type Journal Article Pages 171-171 DOI 10.1007/s10730-010-9132-7 Authors Jeffrey P. Bishop, Saint Louis University Tenet Chair of Health Care Ethics, Albert Gnaegi Center for Health Care Ethics Salus Center, Room 527, 3545 Lafayette Ave St. Louis MO 63104-1314 USA Joseph B. Fanning, Vanderbilt University Center for Biomedical Ethics and Society 2525 West End Ave., 4th Floor, Suite 400 Nashville TN 37203 USA Mark J. Bliton, Vanderbilt University (...) Center for Biomedical Ethics and Society 2525 West End Ave., 4th Floor, Suite 400 Nashville TN 37203 USA Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737 Journal Volume Volume 22 Journal Issue Volume 22, Number 2. (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...

(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.

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)

Open-uterine surgery to repair spina bifida, or ‘fetal surgery of open neural tube defects,’ has generated questions throughout its history—and continues to do so in a variety of contexts. As clinical ethics consultants who worked (Mark J. Bliton) and trained (Virginia L. Bartlett) at Vanderbilt University—where the first successful cases of open-uterine repair of spina bifida were carried out—we lived with these questions for nearly two decades. We worked with clinicians as they were developing and offering the procedure, with researchers (...) in refining and studying the procedure, and with pregnant women and their partners as they considered whether to undergo the procedure. From this experience in the early studies at Vanderbilt, we learned that pregnant women and their partners approach the clinical uncertainty of such a risky procedure with a curious and unique combination of practicality, self-reflection, fear, and overwhelming hope. These early experiences were a major contributing factor to the inclusion of an ethics-focused interview in the informed consent process for the Management of Myelomeningocele Study (MOMS) trial study design. (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)

Volume 20, Issue 9, September 2020, Page 31-33.

The question I investigate concerns the ethics of clinical ethics consultation. To begin, I reconstruct and critically assess a widespread understanding of clinical medical ethics, one most prominently advanced by Mark Siegler. That examination reveals an overtly political strategy designed to reinforce physician authority. Next, John La Puma's work is discussed. Arguably the most prominent of Siegler's students, and certainly the most prolific, La Puma appears attentive to the problems in Siegler's view regarding clinical judgment. I conclude, however, that La (...) Puma assumes a relatively flexible system of formal rules and more extensive informal codes which define the concepts and procedures of medical consultation and which he simply transcribes for ethics consultation. ;Albert Jonsen and Stephen Toulmin have apparently endorsed this medicalized strategy. They contend that the view of ethics advocated by these physicians represents a "new" casuistry consistent if not identical to their own theory. I show that the casuist method of clinical ethical decision making simply appropriates features of the diagnostic apparatus embedded in the political economy of the enterprise of medicine and makes the role of ethicist parasitic on that of the physician as expert. Their casuistry, I argue, merely serves as a means to reinforce the standardized apparatus of professional authority exercised in medical procedures and concepts. ;Finally, I sketch an alternative way to think about how experience with other persons informs ethical decision making. On the basis of an extensive and nuanced account of an ethics consultation, I argue that to consult as a clinical philosopher in any situation is, necessarily, to be focused on that individual situation for its own sake. Clinical philosophy, as a result, must be done by attending strictly to what appears as it appears: the issues, concerns, and questions expressed, in their own terms, by those individuals whose situation it is. (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)

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...

“If philosophy is essentially this activity of questioning and responding, that is, dialogue…” ∼ R.M. Zaner (The Way of Phenomenology)“Not to philosophize is to philosophize still.” E. Lévinas (“Go...

This essay considers Richard Zaners storytelling in Troubled Voices as a form of possibilizing which uses the stories to exemplify important moral themes such as contingency and freedom. Distinguishing between activities of moral discovery through the telling of a story and posing in the sense of writing to tell the moral of the story, I suggest that something crucial goes on for Zaner in his own tellings. Several of the more insistent implications Zaner reveals about the moral relationships encountered in (...) the activity of clinical ethics consultation are examined in that light, especially regarding this question: is it more beneficial, or harmful, to articulate elements of core meanings and values that are entailed in individual viewpoints, which, prior to an ethics consultants participation, may have remained unspoken and possibly unacknowledged? (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)

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)

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.

Harrowing stories reported in the media describe Covid‐19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision‐making by reducing available surrogate decision‐makers for incapacitated patients, increases the emotional burdens of surrogate decision‐makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, in (...) response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision‐making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience. (shrink)

This written account of a clinical encounter - depicting fragments of a more extensive array of events - attempts to exemplify many facets and associated complexities of clinical ethics consultation. Within the general telling, I provide more detailed portrayals of several key events. In secion 1, I document briefly my initial interactions at the beginning of the consultation, focusing on the information gained - in the context of those interactions - as I read the medical chart of Mrs. Rose. Next (...) in section 2, I briefly describes my initial conversation with Mrs. Rose's three sons. Section 3 illustrates several questions raised in sections 1 and 2. Then section 4 presents my encounter with Paul, the youngest son, as he was carrying out his vigil at his mother's bedside in the hospital. Section 5 chronicles my interactions with several care providers involved in Mrs. Rose's situation, including two different meetings that occurred with Mrs. Rose's attending physician. I conclude in section 6 by telling about a conversation I had with Mrs. Rose's middle son, Russell, approximately one month after Mrs. Rose died. (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)