The case of a dying baby with is one of the most difficult in pediatric ethics. I have been involved in several such cases and they are extremely challenging for all parties, especially the parents. With the luxury of being an I will comment on this case from the perspective of when it first began and at the end point described in the narrative.

Discussion of the ethics of forgoing medically provided nutrition and hydration tends to focus on adults rather than infants and children. Many appellate court decisions address the legal propriety of forgoing medically provided nutritional support of adults, but only a few have ruled on pediatric cases that pose the same issue.The cessation of nutritional support is implemented most commonly for patients in apermanent vegetative state(often referred to aspersistent vegetative state(hereinafter “PVS”)). An estimated 4,000 to 10,000 American children are in the (...) permanent vegetative state, compared to 10,000 to 25,000 adults. Yet the dearth of literature, case reports, and court decisions suggests that physicians and families of pediatric patients stop medically provided nutrition or seek court orders much less frequently. (shrink)

This paper explores the relationship between teaching and consulting in clinical ethics teaching and the role of the ethics teacher in clinical decision-making. Three roles of the clinical ethics teacher are discussed and illustrated with examples from the authors' experience. Two models of the ethics consultant are contrasted, with an argument presented for the ethics consultant as decision facilitator. A concluding section points to some of the challenges of clinical ethics teaching.

In lieu of an abstract, here is a brief excerpt of the content:Bedside VoicesJacqueline J. GloverThis issue of Narrative Inquiry in Bioethics features ten stories of Certified Nursing Assistants (CNAs) who work primarily in long-term care. This is a voice of direct care at the bedside that is not often heard. The addition of these stories in the literature is long overdue and I am honored to be asked to comment. There is much to learn from these bedside caregivers. All (...) of these stories reflect the deep struggle to be respected as a member of the health care team. But I also hear the pain of being caught in the tension between the desire to be skilled, qualified, and professional and the desire to be present in a way that emphasizes service, caring and common human touch. My commentary is informed by my experience in Rural Bioethics and my work at the Center for Bioethics and Humanities at the University of Colorado which has a commitment to Interprofessional Education. The CNAs' stories reveal much that they share with other health care professionals, but also some unique features that can teach us much.CommonalitiesSelf Care and Being Cared ForThe voice of the CNA is a voice that is echoed in a way by all health care professionals. Each of the stories bears witness to the need to take care of yourself and to be cared for in order to be able to continue to care for others. Leilani Roseberry writes "This unresolved grief and constant exposure to dying and death had me looking at every day, even every moment, through the eyes of a dying person. This is an emotion that is very difficult to put into words." She continues elsewhere, "I believe that if I had grief support opportunities available to me in my professional life, my level of care and compassion would have been much more resilient from the very beginning of my work as a CNA. Instead, only after sorting through emotions affecting my personal life and learning they were a compilation of what I experienced professionally, only then have I become much more resilient in the face of grief and mourning." Danny Reed writes, "Caregivers benefit from the same thing patients and residents do: genuine kindness. Take care of the caregivers because one day they will be all you have left in the world." And from James Bradley, "The work itself can be very draining, but to beat the stress of it, you can follow all the usual stuff like going for walks, playing with your kids, watch TV etc. The best advice though is to, as far as possible, leave the work behind when you walk off at the end of your shift. That may be the hardest thing to do but it is the only way to retain the correct professional approach."Self care can certainly be about boundaries and stress management. Health care institutions, including professional schools, increasingly have wellness programs (Johnson, 2000). It was once thought that [End Page 159] professional and emotional distance was necessary to maintain healthy relationships and avoid burn out. But current thinking seems to indicate the opposite. If a health care professional views his or her work only in terms of tasks to be performed without some connection to the meaning of what he or she is doing for the patient as a human being, that person is more likely to burn out (Halpern, 2003). Bradley's use of "correct professional approach" prompted me to think beyond wellness and health to the need to nurture meaning in one's work. The CNAs' essays are filled with the call to recognize the deeper meaning of their work. Tracy Dudzinski writes, "Most people think anyone can do this job. I thought that myself, twelve years ago. But now I know that it takes someone special. Direct care workers do not do this work because they are getting rich. They do it because they love the work and because it is the right thing to do. This is the hardest job I have ever done but it is also the most rewarding job I have ever done."There is increasing attention to the use of reflective writing in... (shrink)

Medical decision making on behalf of unrepresented patients is one of the most challenging ethical issues faced in clinical practice. The legal environment surrounding these patients is equally complex. This article describes the efforts of a small coalition of interested healthcare professionals to address the issue in Colorado. A brief history of the effort is presented, along with discussion of the legal, ethical, practical, and political dimensions that arose in Colorado’s effort to address decision making for unrepresented patients through an (...) extension of the existing Colorado Medical Treatment Decision Act (CRS 15-18). A discussion of lessons learned in the process is included. (shrink)

Volume 19, Issue 7, July 2019, Page 66-67.

Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that i...

In 2016, the Colorado legislature passed an amendment to Colorado’s medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of advocates responsible for initiating (...) the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado. (shrink)

Discussion of the ethics of forgoing medically provided nutrition and hydration tends to focus on adults rather than infants and children. Many appellate court decisions address the legal propriety of forgoing medically provided nutritional support of adults, but only a few have ruled on pediatric cases that pose the same issue.The cessation of nutritional support is implemented most commonly for patients in a permanent vegetative state ). An estimated 4,000 to 10,000 American children are in the permanent vegetative state, compared (...) to 10,000 to 25,000 adults. Yet the dearth of literature, case reports, and court decisions suggests that physicians and families of pediatric patients stop medically provided nutrition or seek court orders much less frequently. (shrink)

Character structures underlie everyone’s personality. When rigidly defended, they limit us; yet as they become more flexible, they can reveal sources of animation, renewal and authenticity. _The Matrix and Meaning of Character_ guides the reader into an awareness of the archetypal depths that underlie character structures, presenting an original developmental model in which current analytic theories are synthesised. The authors examine nine character structures, animating them with fairy tales, mythic images and case material, creating a bridge between the traditional language (...) of psychopathology and the universal realm of image and symbol. This book will appeal to all analytical psychologists, psychoanalysts and psychotherapists who want to strengthen their clinical expertise. It will help clinicians to extend their clinical insights beyond a strictly behavioural, medical or cognitive approach, revealing the potential of the human spirit. (shrink)

One recurring criticism of the best interests standard concerns its vagueness, and thus the inadequate guidance it offers to care providers. The lack of an agreed definition of ‘best interests’, together with the fact that several suggested considerations adopted in legislation or professional guidelines for doctors do not obviously apply across different groups of persons, result in decisions being made in murky waters. In response, bioethicists have attempted to specify the best interests standard, to reduce the indeterminacy surrounding medical decisions. (...) In this paper, we discuss the bioethicists’ response in relation to the state's possible role in clarifying the best interests standard. We identify and characterise two clarificatory strategies employed by bioethicists —elaborative and enumerative—and argue that the state should adopt the latter. Beyond the practical difficulties of the former strategy, a state adoption of it would inevitably be prejudicial in a pluralistic society. Given the gravity of best interests decisions, and the delicate task of respecting citizens with different understandings of best interests, only the enumerative strategy is viable. We argue that this does not commit the state to silence in providing guidance to and supporting healthcare providers, nor does it facilitate the abuse of the vulnerable. Finally, we address two methodological worries about adopting this approach at the state level. The adoption of the enumerative strategy is not defeatist in attitude, nor does it eventually collapse into (a form of) the elaborative strategy. (shrink)

The idea of the Internet as Gutenberg 2.0—a true revolution in disseminating information—is now a routine part of how bioethics education works. The Internet has become indispensable as a channel for sharing teaching materials and connecting learners with a central platform that houses materials to support an online or hybrid curriculum or a traditional course. A newer idea in bioethics education reflects developments in web-based medical education more broadly and draws on design principles developed for the Internet. This approach to (...) online bioethics education requires thinking about web-based learning as an engaging, potentially immersive experience, about learners' expectations concerning web-based learning, and about differences between self-directed learning and teaching to support group learning. In clinician education in bioethics, the interrelated goals of ethical reflection and practice for professionals and of continuous quality improvement in health care are supported by a focus on real-world challenges and by encouraging the habits of self-directed learning. In this paper, we describe how an international, interdisciplinary team used a web-based framework to develop a health care ethics casebook whose content, design, and pedagogy were tailored to the needs and expectations of health care professionals and other audiences in Singapore; we also explain how they used this framework to make the casebook accessible nationwide and to support cross-cultural learning. (shrink)

This volume explores the experiences of those with little or no power—usually, although not exclusively, animals. The theme of animals as experiencing entities is what links the chapters and characterises the volume. Broadly each author in this volume contributes in one of two ways. The first group, in Section 1, theoretically engages animal subjectivity, animal experiences, and ways in which these are to some extent accessible and knowable to humans. The second group of authors, in Section 2, offer narrative accounts (...) about specific animals or groups of animals and explore to some extent their subjective historical experiences. In summary, the first section diversely theorises about animal experiences, while the second section’s authors assume animals’ subjective experiences and construct narratives that take into account how animals might have subjectively experienced historical phenomena. (shrink)

Physicians traditionally have been given role-specific obligations to promote the well-being of their individual patients, one patient at a time. They are not expected to be concerned with how health care is best allocated between patients, or with how health-care allocations compare to other social goods and services. The assumption seems to be that our society’s health-care allocation should be the cumulative result of individual clinical decisions made on behalf of individual patients. In this view, physicians are the gatekeepers of (...) health-care allocation, because they are responsible for making clinical decisions about prescriptions and admissions to health-care institutions and other services. But they should... (shrink)

Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while interview participants had (...) undergone testing. Recordings were transcribed and analyzed using thematic analysis. Findings were critically interpreted with reference to bioethics scholarship on autonomy. Results: Fifty-six members of the public participated in seven focus groups, and 40 individuals were interviewed separately. Both groups valued the choice of PGT, and believed that it could motivate relevant actions. Focus group themes centered on the perceived value of choices, knowledge enabling action and knowledge about the self. Interview themes suggest that participants reflexively engage with their PGT information to make meaning, and that some appreciate its shortcomings. Critical interpretation of findings shows that while consumers of PGT are able to exercise a degree of autonomy in choosing, they may not be able to achieve a substantive conceptualization of autonomy, one that promotes alignment with higher-order desires. Conclusions: PGT consumers can critically reason about testing. However, they may uncritically accept test results, may not appreciate drawbacks of increased choice, or may overestimate the potential for information to motivate behavioral change. While consumers appear to be capable of substantive autonomy, they do so without ongoing support from companies. PGT companies promote a problematic (“default”) account of autonomy, reliant on empowerment rhetoric. This leaves consumers vulnerable to making decisions inconsistent with their higher-order desires. As PGT expands, claims about its power and value need to be carefully drawn. (shrink)

Despite a growing body of literature focused on understanding experiences of workplace dignity, attention has centered almost exclusively on employees with lower-level jobs. As a result, little is known about how workplace dignity and indignity are experienced by employees with middle- and upper-level jobs and how their experiences differ from those with lower-level jobs. We address these absences by interviewing employees from a diversity of lower-, middle-, and upper-level jobs about their experiences of indignity at work. We outline common dignity (...) threats, along with typical emotional responses and recourses employees use at each level. We find lower-level employees experience chronic dignity threats from being disrespected, devalued, demeaned, and dehumanized, to which their most typical response is endurance. Middle-level employees experience periodic dignity threats due to undermining of their work, confidence, and reputation. For them, the typical response is strategizing. Finally, on the rare occasions upper-level employees experience dignity threats, it usually is due to a disregard of their special expertise or denial of special rights, to which they respond by rising above. (shrink)

Introdução a Levinas a partir da discussão sobre a problemática da subjetividade.

The western-based leadership and ethics literatures were reviewed to identify the key characteristics that conceptually define what it means to be an ethical leader. Data from the Global Leadership and Organizational Effectiveness (GLOBE) project were then used to analyze the degree to which four aspects of ethical leadership – Character/Integrity, Altruism, Collective Motivation, and Encouragement – were endorsed as important for effective leadership across cultures. First, using multi-group confirmatory factor analyses measurement equivalence of the ethical leadership scales was found, which (...) provides indication that the four dimensions have similar meaning across cultures. Then, using analysis of variance (ANOVA) tests each of the four dimensions were found to be universally endorsed as important for effective leadership. However, cultures also varied significantly in the degree of endorsement for each dimension. In the increasingly global business environment, these findings have implications for organizations implementing ethics programs across cultures and preparing leaders for expatriate assignments. (shrink)

This study extends the examination of moral content in the media by exploring moral messages in television programming and viewer characteristics predictive of the ability to perceive such messages. Generalisability analyses confirmed the reliability of the Media’s Moral Messages (MMM) rating form for analysing programme content and the existence of 10 moral themes prevalent in television media. Standard regression analyses yielded evidence indicating viewers’ moral expertise, as measured by the Defining Issues Test (DIT), familiarity with the programme and level of (...) education predicted their ability to perceive moral messages in a television drama popular in the USA at the time of data collection. Identification of patterns in moral content represented in television programming, as well as knowledge of how viewer characteristics relate to their ability to perceive such content, can provide parents and educators with a means for better comprehending messages regarding human interaction to which they or their children are exposed. (shrink)

Volume 20, Issue 10, October 2020, Page W4-W7.

Technologic advances mean automated, wearable cameras are now feasible for investigating health behaviors in a public health context. This paper attempts to identify and discuss the ethical implications of such research, in relation to existing guidelines for ethical research in traditional visual methodologies. Research using automated, wearable cameras can be very intrusive, generating unprecedented levels of image data, some of it potentially unflattering or unwanted. Participants and third parties they encounter may feel uncomfortable or that their privacy has been affected (...) negatively. This paper attempts to formalize the protection of all according to best ethical principles through the development of an ethical framework. Respect for autonomy, through appropriate approaches to informed consent and adequate privacy and confidentiality controls, allows for ethical research, which has the potential to confer substantial benefits on the field of health behavior research. (shrink)