Joan Liaschenko

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common.

The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley’s rights, including a right to an intact, unaltered body, or on Ashley’s parents’ rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, however, that caregiving is a central issue in the controversy, as Ashley’s need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called “holding.” We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family’s contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family “holding” for Ashley.

Surgical “buy-in” is an “informal contract between surgeon and patient in which the patient not only consents to the operative procedure but commits to the post-operative surgical care anticipated by the surgeon.”1 Surgeons routinely assume that patients wish to undergo treatment for operative complications so that the overall treatment course is “successful,” as in the treatment of a post-operative infection. This article examines occasions when patients buy-in to a treatment course that carries risk of complication, yet refuse treatment when complications arise. We coin this counter-phenomenon “cashing-out.” Cashing-out may elicit negative feelings among careproviders. We question why patients or families may wish to cash-out. One reason may be the changing epistemological position of patients as they experience a complication. The shift from the hypothetical discussion of complications during the initial informed-consent process to the experience of having a complication represents new knowledge. Patients and families may use this knowledge as the basis to revoke consent for some or all of the remaining treatment course. This article seeks to understand cashing-out in terms of the patients’ experiences. We hope to prompt recognition of this phenomenon across medical contexts and to provide impetus for further work to understand why patients may wish to cash-out.

Moral distress has been covered extensively in the nursing literature and increasingly in the literature of other health professions. Cases that cause nurses’ moral distress that are mentioned most frequently are those concerned with prolonging the dying process. Given the standard of aggressive treatment that is typical in intensive care units (ICUs), much of the existing moral distress research focuses on the experiences of critical care nurses. However, moral distress does not automatically occur in all end-of-life circumstances, nor does every critical care nurse suffer its damaging effects. What are the practices of these nurses? What specifically do they do to navigate around or through the distressing situations? The nursing literature is lacking an answer to these questions. This article reports a study that used narrative analysis to explore the reported practices of experienced critical care nurses who are skilled at and comfortable working with families and physicians regarding the withdrawal of aggressive treatment. A major finding was that these nurses did not report experiencing the dam-Moral Agency, Moral Imagination, and Moral Community: Antidotes to Moral Distress Terri Traudt, Joan Liaschenko, and Cynthia Peden-McAlpine Terri Traudt, MBC, MA, is a Communications Consultant specializing in bioethics at the Center for Bioethics at the University of Minnesota, in Minneapolis. [email protected] Joan Liaschenko, PhD, RN, FAAN, is a Professor at the Center for Bioethics and Nursing at the University of Minnesota. Cynthia Peden-McAlpine, PhD, ACNS, BC, is an Associate Professor in the School of Nursing at the University of Minnesota. © 2016 by The Journal of Clinical Ethics. All rights reserved. aging effects of moral distress as described in the nursing literature. The verbal communication and stated practices relevant to this finding are organized under three major themes: (1) moral agency, (2) moral imagination, and (3) moral community. Further, a total of eight subthemes are identified. The practices that constitute these themes and subthemes are further detailed and discussed in this article. Understanding these practices can help mitigate critical care nurses’ moral distress.

It is time for the noon conference. Your job is to impart a career-changing experience in ethics to a group of students and interns gathered from four different schools with varying curriculums in ethics. They have just finished 1½ h of didactic sessions and lunch. One third of them were on call last night. Your first job is to keep them awake. The authors argue that this “tragic case” approach to ethics education is of limited value because it limits understanding of moral problems to dilemmas; negates the moral agency of the student; encourages solutions that are merely intellectual; and suggests that ethical encounters are a matter for experts. The authors propose an alternative that focuses on three issues: the provider-patient relationship, the relationships between providers in the everyday world of health work and, the social position of healthcare providers in society. In this approach, teachers are not experts but more like guides on a journey who help students to learn that much of ethical practice comprises living through difficult situations of caring for vulnerable others and who help students to navigate some of these difficulties

It may be the case that the most challenging moral problem of the twenty‐first century will be the relationship between the individual moral agent and the practices and institutions in which the moral agent is embedded. In this paper, we continue the efforts that one of us, Joan Liaschenko, first called for in 1993, that of using feminist ethics as a lens for viewing the relationship between individual nurses as moral agents and the highly complex institutions in which they do the work of nursing. Feminist ethics, with its emphasis on the inextricable relationship between ethics and politics, provides a useful lens to understand the work of nurses in context. Using Margaret Urban Walker's and Hilde Lindemann's concepts of identity, relationships, values, and moral agency, we argue that health care institutions can be moral communities and profoundly affect the work and identity and, therefore, the moral agency of all who work within those structures, including nurses. Nurses are not only shaped by these organizations but also have the power to shape them. Because moral agency is intimately connected to one's identity, moral identity work is essential for nurses to exercise their moral agency and to foster moral community in health care organizations. We first provide a brief history of nursing's morally problematic relationship with institutions and examine the impact institutional master narratives and corporatism exert today on nurses’ moral identities and agency. We close by emphasizing the significance of ongoing dialogue in creating and sustaining moral communities, repairing moral identities, and strengthening moral agency.

Artificial persons are those who speak and act for others. Nurses speak and act for patients as well as for physicians and institutions, or, more aptly, institutionalized medicine. Yet, acting for institutionalized medicine can be harmful to nurses, due to the psychological experience of moral distress and the loss of integrity of their practice. This paper illustrates the harm to nurses as expressed in narratives of their practice, and suggests some initial steps we might take in resisting the artificial personhood imposed by institutionalized medicine.

One of the most significant changes in modern healthcare delivery has been the evolution of the paper record to the electronic health record (EHR). In this paper we argue that the primary change has been a shift in the focus of documentation from monitoring individual patient progress to recording data pertinent to Institutional Priorities (IPs). The specific IPs to which we refer include: finance/reimbursement; risk management/legal considerations; quality improvement/safety initiatives; meeting regulatory and accreditation standards; and patient care delivery/evidence based practice. Following a brief history of the transition from the paper record to the EHR, the authors discuss unintended or contested consequences resulting from this change. These changes primarily reflect changes in the organization and amount of clinician work and clinician‐patient relationships. The paper is not a research report but was informed by an institutional ethnography the aim of which was to understand how the EHR impacted clinicians and administrators in a large, urban hospital in the United States. The paper was also informed by other sources, including the philosophies of Jacques Ellul, Don Idhe, and Langdon Winner.

During the last decade, several court cases have focused attention on the moral and legal aspects of withholding or withdrawing food and fluids from certain patients. The courts have not been unanimous in their judgments on these matters. In attempting to explore this issue, this article reviews both the nursing and medical literature on the withdrawing and withholding of food and fluids with particular attention to empirical studies. Several themes which emerge from the literature are used to explore the similarities and differences between the practices of nursing and medicine where nutritional support is concerned

Moral distress has been written about extensively in nursing and other fields. Often, however, it has not been used with much theoretical depth. This paper focuses on theorizing moral distress using feminist ethics, particularly the work of Margaret Urban Walker and Hilde Lindemann. Incorporating empirical findings, we argue that moral distress is the response to constraints experienced by nurses to their moral identities, responsibilities, and relationships. We recommend that health professionals get assistance in accounting for and communicating their values and responsibilities in situations of moral distress. We also discuss the importance of nurses creating “counterstories” of their work as knowledgeable and trustworthy professionals to repair their damaged moral identities, and, finally, we recommend that efforts toward shifting the goal of health care away from the prolongation of life at all costs to the relief of suffering to diminish the moral distress that is a common response to aggressive care at end-of-life