An Overview of Ethical Issues Raised by Medicolegal Challenges to Death by Neurologic Criteria in the United Kingdom and a Comparison to Management of These Challenges in the USA.

Although medicolegal challenges to the use of neurologic criteria to declare death in the USA have been well-described, the management of court cases in the United Kingdom about objections to the use of neurologic criteria to declare death has not been explored in the bioethics or medical literature. This article (1) reviews conceptual, medical and legal differences between death by neurologic criteria (DNC) in the United Kingdom and the rest of the world to contextualize medicolegal challenges to DNC; (2) summarizes highly publicized legal cases related to DNC in the United Kingdom, including the nuanced 2022 case of Archie Battersbee, who was transiently considered dead by neurologic criteria, but ultimately determined to be in a vegetative state/unresponsive-wakeful state; and (3) provides an overview of ethical issues raised by medicolegal challenges to DNC in the United Kingdom and a comparison to the management of these challenges in the USA.

End-of-life care at home: Dignity of family caregivers.

BACKGROUND: Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. AIM: This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. RESEARCH DESIGN AND PARTICIPANTS: This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer's philosophical hermeneutics. ETHICAL CONSIDERATIONS: Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. RESULTS: The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. CONCLUSION AND FINAL CONSIDERATIONS: The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices.

From Bridge to Destination? Ethical Considerations Related to Withdrawal of ECMO Support over the Objections of Capacitated Patients.

Extracorporeal membrane oxygenation (ECMO) is typically viewed as a time-limited intervention-a bridge to recovery or transplant-not a destination therapy. However, some patients with decision-making capacity request continued ECMO support despite a poor prognosis for recovery and lack of viability as a transplant candidate. In response, critical care teams have asked for guidance regarding the ethical permissibility of unilateral withdrawal over the objections of a capacitated patient. In this article, we evaluate several ethical arguments that have been made in favor of withdrawal, including distributive justice, quality of life, patients' rights, professional integrity, and the Equivalence Thesis. We find that existing justifications for unilateral withdrawal of ECMO support in capacitated patients are problematic, which leads us to conclude that either: (1) additional ethical arguments are necessary to defend this approach or (2) the claim that it is not appropriate to use ECMO as a destination therapy should be questioned.

Ethical conflicts experienced by community nurses: A qualitative study.

BACKGROUND: Despite news reports of morally distressing situations resulting from complex and demanding community-care delivery in Canada, there has been little research on the topic of ethical conflicts experienced by community-based health care professionals. RESEARCH AIM: To identify ethical conflicts experienced by community nurses. RESEARCH DESIGN: Data were collected using semi-structured interviews and then relevant text was extracted and condensed using qualitative content analysis. This research was part of a larger grounded theory project examining how community nurses manage ethical conflict. RESEARCH CONTEXT AND PARTICIPANTS: Community nurses, including 13 public health nurses and 11 home care nurses from two Canadian provinces, were interviewed. ETHICAL CONSIDERATIONS: Study approval was granted by the Health Research Ethics Authority of Newfoundland and Labrador and by provincial health authorities. FINDINGS: Seven ethical conflicts were identified and assigned to one of two groups. In the grouping categorized as challenges with obligations or risks, the ethical conflicts were: (1) screening for child developmental issues knowing there is a lack of timely early intervention services; (2) encountering inequities in the health care system; (3) not fulfilling principles, goals, and initiatives of primary and secondary prevention; and (4) feeling powerless to advocate for clients. The remaining ethical conflicts were categorized as challenges with process, risks, and consequences, and were: (5) jeopardizing therapeutic relationships while reporting signs of a child at risk; (6) managing confidentiality when neighbors are clients; and (7) supporting client autonomy and decision-making but uncertain of the consequences. CONCLUSIONS: Research investigation will continue to be important to raise awareness and mobilize ethics supports as health care services are steadily shifted from institutional to community settings. Moreover, with heightened potential for communicable disease outbreaks across international borders from global warming, community nurses around the world will continue to be required to address ethically-difficult care situations with competence and compassion.

Postponed Withholding: Balanced Decision-Making at the Margins of Viability.

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has gained ground. However, the need to start immediate life support and the ensuing difficulty of withdrawing treatment stands in tension with the possibility of a fair decision-making process. Both the parental "instinct of saving" and "withdrawal resistance" involved can preclude shared decision-making. To help health care personnel and empower parents, we propose a novel approach labeled "postponed withholding." In the absence of a prenatal advance directive, life support is started at birth, followed by planned redirection to palliative care after one week, unless parents, after a thorough counseling process, actively ask for continued life support. Despite the emotional challenges, this approach can facilitate ethically balanced decision-making processes in the gray zone.

Physicians' Conceptions of the Dying Patient: Scoping Review and Qualitative Content Analysis of the United Kingdom Medical Literature.

Most people in high income countries experience dying while receiving healthcare, yet dying has no clear beginning, and contexts influence how dying is conceptualised. This study investigates how UK physicians conceptualise the dying patient. We employed Scoping Study Methodology to obtain medical literature from 2006-2021, and Qualitative Content Analysis to analyse stated and implied meanings of language used, informed by social-materialism. Our findings indicate physicians do not conceive a dichotomous distinction between dying and not dying, but construct conceptions of the dying patient in subjective ways linked to their practice. We argue that the focus of future research should be on exploring practice-based challenges in the workplace to understanding patient dying. Furthermore, pre-Covid-19 literature related dying to chronic illness, but analysis of literature published since the pandemic generated conceptions of dying from acute illness. Researchers should note the ongoing effects of Covid-19 on societal and medical awareness of dying.

A Dilemma for Respecting Autonomy: Bridge Technologies and the Hazards of Sequential Decision-Making.

Respect for patient autonomy can apply at two levels: ensuring that patient care reflects their considered values and wishes and honoring patient preferences about how to make momentous decisions. Caregivers who seek to respect patient autonomy in the context of some end-of-life decisions face a dilemma. Because these decisions are fraught, patients may prefer to approach them sequentially, only making decisions at the time they arise. However, respecting patients' preferences for a sequential approach can increase the likelihood that surrogates and care teams wind up in situations in which they lack information needed to ensure patients receive care that conforms to their considered values after they are no longer competent to make decisions for themselves. Sequential decision-making can thus conflict with the goal of ensuring care reflects the wishes of patients. After illustrating how this dilemma can arise in the use of life-sustaining "bridge" technologies, we argue that care teams may be warranted in requiring patients to articulate their wishes in an advance care plan before treatment begins. In some cases, care teams may even be permitted to refuse to undertake certain courses of care, unless patients articulate their wishes in an advance care plan.

Clinician distress in seriously ill patient care: A dimensional analysis.

BACKGROUND: Caring for patients with serious illness may severely strain clinicians causing distress and probable poor patient outcomes. Unfortunately, clinician distress and its impact historically has received little attention. RESEARCH PURPOSE: The purpose of this article was to investigate the nature of clinician distress. RESEARCH DESIGN: Qualitative inductive dimensional analysis. PARTICIPANTS AND RESEARCH CONTEXT: After review of 577 articles from health sciences databases, a total of 33 articles were eligible for analysis. ETHICAL CONSIDERATIONS: This study did not require ethical review and the authors adhered to appropriate academic standards in their analysis. FINDINGS: A narrative of clinician distress in the hospital clinician in the United States emerged from the analysis. This included clinicians' perceptions and sense of should or the feeling that something is awry in the clinical situation. The explanatory matrix consequence of clinician distress occurred under conditions including: the recognition of conflict, the recognition of emotion, or the recognition of a mismatch; followed by a process of an inability to feel and act according to one's values due to a precipitating event. DISCUSSION: This study adds three unique contributions to the concept of clinician distress by (1) including the emotional aspects of caring for seriously ill patients, (2) providing a new framework for understanding clinician distress within the clinician's own perceptions, and (3) looking at action outside of a purely moral lens by dimensionalizing data, thereby pulling apart what has been socially constructed. CONCLUSION: For clinicians, learning to recognize one's perceptions and emotional reactions is the first step in mitigating distress. There is a critical need to understand the full scope of clinician distress and its impact on the quality of patient-centered care in serious illness.

Experiences of critical care nurses during the early months of the COVID-19 pandemic.

BACKGROUND: Critical care nurses have risked their lives and in some cases their families through hazardous duty during the COVID-19 pandemic and have faced multiple ethical challenges. RESEARCH/AIM: The purpose of our study was to examine how critical care nurses coped with the sustained multi-faceted pressures of the critical care environment during the unchartered waters of the COVID-19 pandemic. It was anticipated that our study might reveal numerous ethical challenges and decision points. RESEARCH DESIGN: A qualitative descriptive study, utilizing an interpretivist paradigm. PARTICIPANTS AND RESEARCH SETTING: Critical care nurses, working in either intensive care units or emergency departments (N = 11) who were primarily from Northern California hospitals. Individual in-depth ZOOM® session interviews, guided by semi-structured questions, were used to collect data. Interviews lasted between 18 and 59 min, with an average length of 33 min. Session interviews were transcribed and analyzed. ETHICAL CONSIDERATIONS: This study was approved by the researchers' university Institutional Review Board. FINDINGS: Five main themes emerged: Fear of the Unknown, Adapting to Practice Changes and Challenges, Patient Advocacy and Moral Distress, Isolation and the Depersonalization of Care, and Professionalism and a Call to Duty. DISCUSSION AND CONCLUSION: Fear of becoming ill or bringing COVID-19 home to their families was a constant source of anxiety for nurses. There were numerous changes in policy and challenges to standard practice protocols, including most notably shortages in personal protective equipment, which nurses navigated resourcefully. Most nurses interviewed were motivated by a sense of professional duty. The nurses experienced some moral distress in their inability to advocate as they might like for their patients, especially at end of life. Infection control requirements for isolation.

Cultural sensitivity in brain death determination: a necessity in end-of-life decisions in Japan.

BACKGROUND: In an increasingly globalized world, legal protocols related to health care that are both effective and culturally sensitive are paramount in providing excellent quality of care as well as protection for physicians tasked with decision making. Here, we analyze the current medicolegal status of brain death diagnosis with regard to end-of-life care in Japan, China, and South Korea from the perspectives of front-line health care workers. MAIN BODY: Japan has legally wrestled with the concept of brain death for decades. An inability to declare brain death without consent from family coupled with cultural expectations of family involvement in medical care is mirrored in other Confucian-based cultures (China and South Korea) and may complicate care for patients from these countries when traveling or working overseas. Within Japan, China, and South Korea, medicolegal shortcomings in the diagnosis of brain death (and organ donation) act as a great source of stress for physicians and expose them to potential public and legal scorn. Here, we detail the medicolegal status of brain death diagnosis within Japan and compare it to China and South Korea to find common ground and elucidate the impact of legal ambiguity on health care workers. CONCLUSION: The Confucian cultural foundation of multiple Asian countries raises common issues of family involvement with diagnosis and cultural considerations that must be met. Leveraging public education systems may increase awareness of brain death issues and lead to evolving laws that clarify such end-of-life issues while protecting physicians from sociocultural backlash.

Problematizing "Planning Ahead": A Cross-Cultural Analysis of Vietnamese Health and Community Workers' Perspectives on Advance Care Directives.

Informed by values of autonomy and self-determination, advance care planning assumes that individuals should independently take control of their future health. In this article, we draw on research conducted with Vietnamese health and community workers to problematize individualized approaches to planning ahead, reframe notions of "cultural and linguistic barriers," and expose how homogeneous messages about care at the end of life are not readily translatable within and across diverse groups. Anthropological and feminist critiques of inclusion and exclusion are used to reorientate Anglophone framings of the individual and of cultural and linguistic differences. In this article, we suggest that it is the narrow singularity of care for the self-rather than diverse relationalities of care-that should be overcome if aging and end-of-life care policy and practice is to be broadened and made relevant to migrant and non-English-speaking groups.

Transition to comfort-focused care: Moral agency of acute care nurses.

BACKGROUND: Moving into the last phase of life comprises a developmental transition with specific needs and risks. Facilitating transitions is an important component of the work of nurses. When curative interventions are no longer helpful, nurses enact key roles in caring for patients and families. AIM: The aim of this study was to examine the experiences of registered nurses in acute care settings as they worked with patients and families to facilitate transition to comfort-focused care. RESEARCH DESIGN: Sampling, data collection, and data analysis were guided by constructivist grounded theory, chosen because of its strength in identifying and explicating social processes. PARTICIPANTS AND CONTEXT: A purposeful sample of 26 registered nurses working in acute care hospitals in one community in the northeastern United States participated in this study through semi-structured interviews. ETHICAL CONSIDERATIONS: The study received approval from the university's Institutional Review Board for the Protection of Human Subjects. Participants provided informed consent. FINDINGS: Nurses facilitated transition to comfort-focused care by enacting their moral commitments to patients and families. They focused on building relationships, honoring patient self-determination, and maintaining respect for personhood. In this context, they discerned a need for transition, opened a discussion, and used diverse strategies to facilitate achieving consensus on the part of patients, family members, and care providers. Regardless of how the process unfolded, nurses offered support throughout. DISCUSSION: Achievement of consensus by all stakeholders is critical in the transition to comfort-focused care. This study deepens our understanding of how nurses as moral agents utilize specific strategies to assist progress toward consensus. It also offers an example of recognizing the moral agency of nurses through listening to their voices. CONCLUSION: Increased understanding of effective nursing strategies for facilitating transition to comfort-focused care is essential for developing needed evidence for excellent care and strengthening end-of-life nursing education.

The Surprise Question and Serious Illness Conversations: A pilot study.

BACKGROUND: Serious Illness Conversations aim to discuss patient goals. However, on acute medicine units, seriously ill patients may undergo distressing interventions until death. OBJECTIVES: To investigate the feasibility of using the Surprise Question, "Would you be surprised if this patient died within the next year?" to identify patients who would benefit from early Serious Illness Conversations and study any changes in the interdisciplinary team's beliefs, confidence, and engagement as a result of asking the Surprise Question. DESIGN: A prospective cohort pilot study with two Plan-Do-Study-Act cycles. PARTICIPANTS/CONTEXT: Fifty-eight healthcare professionals working on Acute Medicine Units participated in pre- and post-intervention questionnaires. The intervention involved asking participants the Surprise Question for each patient. Patient charts were reviewed for Serious Illness Conversation documentation. ETHICAL CONSIDERATIONS: Ethical approval was granted by the institutions involved. FINDINGS: Equivocal overall changes in the beliefs, confidence, and engagement of healthcare professionals were observed. Six out of 23 patients were indicated as needing a Serious Illness Conversation; chart review provided some evidence that these patients had more Serious Illness Conversation documentation compared with the 17 patients not flagged for a Serious Illness Conversation. Issues were identified in equating the Surprise Question to a Serious Illness Conversation. DISCUSSION: Appropriate support for seriously ill patients is both a nursing professional and ethical duty. Flagging patients for conversations may act as a filtering process, allowing healthcare professionals to focus on conversations with patients who need them most. There are ethical and practical issues as to what constitutes a "serious illness" and if answering "no" to the Surprise Question always equates to a conversation. CONCLUSION: The barriers of time constraints and lack of training call for institutional change in order to prioritise the moral obligation of Serious Illness Conversations.

Dignity of older home-dwelling women nearing end-of-life: Informal caregivers' perception.

BACKGROUND: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss. AIM: The aim of this study was to explore informal caregivers' perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. RESEARCH DESIGN AND METHOD: The study was founded upon Gadamer's philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. ETHICAL CONSIDERATION: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. RESULTS: Three main sources important in preserving the older women's dignity were identified: maintaining one's self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. DISCUSSION AND FINAL CONSIDERATIONS: On the individual level, the opportunity to maintain one's self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women's dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women's living space, these perspectives should be emphasized in healthcare professionals' educational training and in the municipal end-of-life care of these patients.

Perspective of Doctors and Nurses on the Principle of Extended Autonomy in Konya, Turkey.

Despite the support with legislation in Turkey regarding extended autonomy and advance directive, there is no clear provision and sufficient practice on the subject. Turkish doctors and nurses are generally unfamiliar with the conception of extended autonomy or advance directive, which raises dilemmas in terms of life-support choice, and this situation can even affect clinical decision-making processes. This study investigated the awareness level about extended autonomy and advance directive in Turkey and assessed doctors and nurses' attitudes toward patient autonomy. This was a quantitative descriptive study. It was found that the 46.8% of the respondents supported the principle of extended autonomy in health service delivery. However, 53.8% of the respondents had poor knowledge regarding advance directive. Majority (77.9%) of the respondents indicated that the legislative arrangements should be made concerning the principle of extended autonomy and the advance directive, which is its field of application.

Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force.

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.

Cognitive Transformation, Dementia, and the Moral Weight of Advance Directives.

Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient's preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients.

Health Care Professionals' Awareness of a Child's Impending Death.

Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.

The new futility? The rhetoric and role of "suffering" in pediatric decision-making.

This article argues that while the presence and influence of "futility" as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like "futility," claims of patient "suffering" have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like "futility," it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.

Everything I Really Needed to Know to Be a Clinical Ethicist, I Learned From Elisabeth Kübler-Ross.

I analyze the insights present in Elisabeth Kübler-Ross's seminal work, On Death and Dying that have laid the foundation for contemporary clinical bioethics as it is practiced by clinical ethics consultants. I highlight the landmark insight of Elisabeth Kübler-Ross that listening to dying patients reveals their needs and enables them to enjoy a better death. But more important for contemporary clinical ethics is that the text highlights three tensions that the clinical ethicist must navigate but can never truly resolve. Clinical ethicists must balance: (1) the need to hear the patient's voice with the temptation to overly medicalize the case, (2) helping the patient achieve a better death with enabling the patient to die in the way he or she chooses, and (3) keeping professional distance with engaging the patient in a way that respects the intimacy of the patient's disclosures.