Being a healthcare professional in both paediatric and adult hospitals will mean being exposed to human tragedies and stressful events involving conflict, misunderstanding, and moral distress. There are a number of different structured approaches to reflection and discussion designed to support healthcare professionals process and make sense of their feelings and experiences and to mitigate against direct and vicarious trauma. In this paper, we draw from our experience in a large children’s hospital and more broadly from the literature to identify (...) and analyse four established approaches to facilitated reflective discussions. Each of the four approaches seeks to acknowledge the stressful nature of health professional work and to support clinicians from all healthcare professions to develop sustainable skills so they continue to grow and thrive as health professionals. Each approach also has the potential to open up feelings of uncertainty, frustration, sorrow, anguish, and moral distress for participants. We argue, therefore, that in order to avoid unintentionally causing harm, a facilitator should have specific skills required to safely lead the discussion and be able to explain the nature, scope, safe application, and limits of each approach. With reference to a hypothetical but realistic clinical case scenario, we discuss the application and key features of each approach, including the goals, underpinning theory, and methods of facilitation. (shrink)

Background: Obtaining patients’ informed consent is an ethical and legal obligation in healthcare practice. Whilst the law provides prescriptive rules and guidelines, ethical theories of autonomy provide moral foundations. Models of practice of consent, have been developed in the bioethical literature to assist in understanding and integrating the ethical theory of autonomy and legal obligations into the clinical process of obtaining a patient’s informed consent to treatment.Aims: To review four models of consent and analyse the way each model incorporates the (...) ethical meaning of autonomy and how, as a consequence, they might change the actual communicative process of obtaining informed consent within clinical contexts.Methods: An iceberg framework of consent is used to conceptualise how ethical theories of autonomy are positioned and underpin the above surface, and visible clinical communication, including associated legal guidelines and ethical rules. Each model of consent is critically reviewed from the perspective of how it might shape the process of informed consent.Results and discussion: All four models would alter the process of obtaining consent. Two models provide structure and guidelines for the content and timing of obtaining patients’ consent. The two other models rely on an attitudinal shift in clinicians. They provide ideas for consent by focusing on underlying values, attitudes and meaning associated with the ethical meaning of autonomy.Conclusions: The paper concludes that models of practice that explicitly incorporate the underlying ethical meaning of autonomy as their basis, provide less prescriptive, but more theoretically rich guidance for healthcare communicative practices. (shrink)

As is so often the case in a common law system, the legal protection conferred by one strand of law is undermined by other legal provisions. There is no blanket legal duty which compels health care professionals to undergo HIV/AIDS tests; on the other hand, appropriately drafted contracts of employment, duties imposed by courts on employees and the risk of litigation by patients with pressurise individual workers to submit to testing. Whereas in Italy the law clearly condemned any compulsory testing (...) of health care workeers, but must now be interpreted to support it, in England and Wales each individual worker's case must be examined in order to determine whether testing must be submitted to. (shrink)

A notable feature of the COVID-19 pandemic is that children are less at risk of becoming infected or, if infected, less likely to become seriously unwell, so ethical discussions have consequently focused on the adult healthcare setting. However, despite a lower risk of children becoming acutely ill with COVID-19, there nevertheless may be significant and potentially sustained effects of COVID-19 on the physical, psychological, and emotional health and well-being of children. Focusing on the context of children’s cancer care, and specifically (...) bone marrow transplant, we describe some of these effects and then address one specific ethical challenge that arises. That is the question of what and how much to tell children whose cancer treatment has been changed because of COVID-19. Drawing on our previous work on the ethical reasons for telling the truth to younger children we link different ethical reasons to the different types of information that could be given to children in this context. We argue that children should be given an explanation of the changes that they will directly experience, including some changes to the process of their actual medical treatment; but not about increased risk associated with these changes, unless they specifically ask for this information. (shrink)

Bioethics, Volume 36, Issue 7, Page 765-773, September 2022.

Alderson critiques our recent book on the basis that it overlooks children’s own views about their medical treatment. In this response, we discuss the complexity of the paediatric clinical context and the value of diverse approaches to investigating paediatric ethics. Our book focuses on a specific problem: entrenched disagreements between doctors and parents about a child’s medical treatment in the context of a paediatric hospital. As clinical ethicists, our research question arose from clinicians’ concerns in practice: What should a clinician (...) do when he or she thinks that parents are choosing a treatment pathway that does not serve the child’s best interests? Alderson’s work, in contrast, focuses on the much broader issue of children’s role in decision-making about treatment and research. We argue that these different types of work are zooming in on different aspects of paediatric ethics, with its complex mix of agents, issues and relationships. Paediatric ethics overall needs a rich mix of approaches,... (shrink)

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. ‘Fertility preservation’ for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional difference of opinion (...) about whether it is ethical to offer such ‘experimental’ procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents’ decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children’s Hospital in Melbourne, Australia. (shrink)

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. ‘Fertility preservation’ for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional difference of opinion (...) about whether it is ethical to offer such ‘experimental’ procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents’ decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children’s Hospital in Melbourne, Australia. (shrink)

In this paper, we explore the ethics of restricting visitation to hospitals during an infectious disease outbreak. We aim to answer three questions: What are the features of an ethically justified hospital visitor restriction policy? Should policies include scope for case‐by‐case exemptions? How should decisions about exemptions be made? Based on a critical interpretive review of the existing ethical literature on visitor restrictions, we argue that an ethically justified hospital visitor restriction policy has the following features: proportionality, comprehensiveness, harm mitigation, (...) exemptions for specific patient populations, visitation decisions made separately from a patient's treating clinicians, transparency, and consistency in application. We also argue that an ethical policy ought to include scope for case‐by‐case exemptions for individual patients. We propose a process for ethical decision‐making that provides a shared language and structure to decrease the risks and burdens of decision‐making when clinicians or managers are considering requests for exemptions. (shrink)

ABSTRACT Samuel R. Delany is among a group of authors who revivified the utopian imagination in science fiction during the late 1960s and early 1970s. This article discusses Delany's novella “We, in Some Strange Power's Employ, Move on a Rigorous Line”. It revisits scholarship on Delany and on utopia to offer theoretical and historical perspectives concerning how this text, which has been lauded by reviewers but overlooked by scholars, represents an early contribution to the then-nascent genre of (...) the “critical utopia,” one that bears many of the genre's hallmarks and prefigures later works. “We, in Some Strange Power's Employ” narrates a mid-twenty-first-century clash between two fully articulated utopian visions. This article details how the tension between these diametrically opposed “worlds” foments critical scrutiny of both in order to gesture toward a utopian horizon beyond them. It also demonstrates how Delany's novella performs a critical utopian intervention in the cultural politics of its present. Through the “play of worlds” in the narrative's “possible future” Delany advances evenhanded critiques of both sides of the 1960s “culture war” while retaining the decade's utopian zeitgeist, a desire for an impossible “something else” beyond the culture/counterculture dichotomy. (shrink)

This article is driven by death. Thematically, death serves as a figure in the central creative works I discuss: Samuel R. Delany's sword-and-sorcery novella The Tale of Plagues and Carnivals, one of the first novels to deal directly with the AIDS pandemic,1 and Lou Reed's songs, especially the proto-punk "Heroin" and the queer soul song "Coney Island Baby." Meanwhile, the argument's methodology also concerns death. As many theorists and critics have discussed,2 the field of queer studies has seen, for (...) at least the past few decades, a general division between a methodology that isolates queerness as a singularly significant figure of identity and a more intersectional queer studies that figures sexuality within a... (shrink)

It would be difficult to overstate the impact of the work of Samuel R. Delany on the often-overlapping fields of science fiction (sf) studies and utopian studies. In his well-known 1982 essay, “Progress Versus Utopia, or, Can We Imagine the Future?” Fredric Jameson argues that Delany, along with Ursula Le Guin, Marge Piercy, and Joanna Russ, is among a socially engaged group of visionary authors who revivified the utopian imagination in sf during the 1960s and 1970s, and he (...) cites Delany’s Triton (1976), Le Guin’s The Dispossessed (1974), Piercy’s Woman on the Edge of Time (1976), and Russ’s The Female Man (1975) as “the most remarkable monuments” in this rebirth of utopia.1 Following Jameson and others, Tom Moylan .. (shrink)

"Us-and-Them fiction" of any sort has never particularly interested me. … Identity is basically a synonym for category, and while categories make language possible, they make problems in life—especially when your try to assign subjects to them. People almost never fit, or never fit for long.In a 2015 interview with Cecilia D'Anastasio, Samuel Delany shares his motivations for writing science fiction from his position as a queer black man. Despite his trepidation about the limiting "categories" within "us-and-them-fiction," and the (...) dangers of essentialist identity politics, Delany notes that his experiences are embedded in each of his texts—even when the protagonists are heterosexual, Asian, Native American, or... (shrink)

The essay provides both an interpretation and a theoretical reconstruction of the political philosophy of Martin Delany, a mid-nineteenth-century radical abolitionist and one of the founders of the doctrine of black nationalism. It identifies two competing strands in Delany's social thought, “classical” nationalism and “pragmatic” nationalism, where each underwrites a different conception of the analytical and normative underpinnings of black political solidarity. It is argued that the pragmatic variant is the more cogent of the two and the one (...) to which Delany is most committed. It is also suggested that pragmatic nationalism can still serve usefully as a theoretical schema through which African Americans can understand and carry out their current political projects. (shrink)

ABSTRACT “Utopia Is in the Blood: The Bodily Utopias of Martin R. Delany and Pauline Hopkins” considers how Delany and Hopkins employ the discourse of racial science in order to construct their own racial utopias. Focusing on Hopkins' Of One Blood and Delany's Principia of Ethnology, Reid argues that the genre of utopian writing enables both authors to refute contemporary scientif ic claims at the same time that they use the discourse of science to establish the utopian (...) past of Ethiopia. Both Delany and Hopkins reconf igure nineteenth-century and turn-of-the-century American racial science in their ethnological texts and reveal an epistemological vision of the scientif ic meaning of blackness through a utopian understanding of “black” blood. (shrink)

While even today lesbian, gay, bisexual and transgender people might have cause to distrust the healthcare establishment, how much more fragile was the relationship between sexual minorities and health professionals in the first decade of the AIDS epidemic. Dissent from consensus healthcare and health research then was a question of survival in the face of political and medical intransigence. This article focuses on one version of AIDS dissent: The narrative representations of AIDS in fiction by the gay African-American fantasy writer (...) Samuel R. Delany, which rejected the rigid binarism of “safe” and “unsafe” sex practices, Delany’s evidence-based dissent. He also engaged in a related form of cultural dissent: speaking the unspeakably obscene, at a time when Silence = Death. Delany called into question both the inferential leaps based on limited epidemiological research that were represented in safer sex guidelines and the widespread public reticence about sexual behavior. (shrink)

In this paper, we put forward the view that emotions have a legitimate and important role in health professional ethics education. This paper draws upon our experience of running a narrative ethics education programme for ethics educators from a range of healthcare disciplines. It describes the way in which emotions may be elicited in narrative ethics teaching and considers the appropriate role of emotions in ethics education for health professionals. We argue there is a need for a pedagogical framework to (...) productively incorporate the role of emotions in health professional ethics teaching. We suggest a theoretical basis for an ethics pedagogy that integrates health professional emotions in both the experience and the analysis of ethical practice, and identify a range of strategies to support the educator to incorporate emotion within their ethics teaching. (shrink)

Clinical ethics committees aim to resolve conflict, facilitate communication and ease moral distress in health care. Dialogue in committee discussions is complex and involves a balance between implicitly and explicitly expressed values of patients, families and professionals. Evaluating effectiveness and concrete outcomes is challenging and most studies focus on broad benefits such as quality of care and reduction of unnecessary or unwanted treatments. In this paper we propose ‘physician satisfaction’ as a valuable outcome. We refer to the clinical ethics approach (...) followed at one large paediatric hospital in Australia, propose reasons for the often-expressed feeling of satisfaction and discuss why this feeling matters. We conclude that physician satisfaction is a valid measure of an effective ethics consultation because it implies the person has been listened to and respected by others, and has perhaps developed greater understanding of and insights into their own work and values, and those of others. (shrink)

Hospitals are places where patients are unwell, where patients and their families may be upset, confused, frustrated, in pain, and vulnerable. The likelihood of these experiences and emotions manifesting in anger and aggressive behaviour is high. In this paper, we describe the involvement of a clinical ethics service responding to a request to discuss family aggression within a rehabilitation department in a large paediatric hospital in Australia. We suggest two key advantages of involving a clinical ethics service in discussions about (...) how to respond to family aggression. First, the process of ethics deliberation provides an opportunity for clinicians to be involved in the solution by articulating their perspectives, tolerance levels, and general concerns about the effects of family aggression towards staff. Second, supporting clinicians to articulate and identify the impact of parental aggression directly counters the disadvantages of the more blunt zero-tolerance policy response, which is necessarily imposed from the top down. (shrink)

Ethics education is recognized as an integral component of health professionals’ education and has been occurring in various guises in the curricula of health professional training in many countries since at least the 1970s. However, there are a number of different aims and approaches adopted by individual educators, programs, and, importantly, different health professions that may be characterized according to strands or trends in ethics education.

:A common goal of ethics education is to equip students who later become health practitioners to not only know about the ethical principles guiding their practice, but to also autonomously recognize when and how these principles might apply and assist these future practitioners in providing care for patients and families. This article aims to contribute to discussions about ethics education pedagogy and teaching, by presenting and evaluating the use of the visual arts as an educational approach designed to facilitate students’ (...) moral imagination and independent critical thinking about ethics in clinical practice. We describe a sequence of ethics education strategies over a 3 year Doctor of Physiotherapy program, focusing on the final year professional ethics assessment task, which involved the use of visual arts to stimulate the exploration of ethics in healthcare. The data were analyzed using both thematic and content analysis. Two key themes centered on emotional responses and lateral thinking. The use of artwork appeared to facilitate imaginative, emotional, and conceptual thinking about ethics and clinical experience. This study provides some evidence to support the effectiveness of the use of the visual arts in promoting students’ recognition of ethical dimensions within their clinical experience and reflection on their emerging professional identity. As one student noted, she left the museum “somewhat changed.”. (shrink)

Bioethics, Volume 35, Issue 7, Page 696-703, September 2021.

One probable success (the case of Mrs Tonge) is not a great deal to set against the courts' overwhelming reluctance to play a part in challenging resource allocation decisions. Nevertheless, where such decisions are inherently unreasonable—for example, as Margaret Brazier has suggested,11 a refusal to treat patients because they are divorced, or because they are Labour Party members—a remedy would be available through the courts. Presumably gender biased rationing decisions would similarly be susceptible to judicial review, although there might be (...) evidential difficulties. Age-related denial of treatment would probably not in itself be considered to be ‘Wednesbury unreasonable’. If it could be shown that within the one health authority a particular patient or a group at a set age were denied treatment others at the same age received, there might be scope for an application to the courts. Evidence sufficient to satisfy judges ‘notoriously unwilling to overturn doctors' decisions’11 would be hard to collect.While courts cannot be expected to determine health care policy, their refusal to examine in any detail the decision-making processes of Health Service authorities has ratified ‘the opacity of current decision-making’.12 Instead of forcing authorities to take decisions in a reasoned and justified manner, the courts by their very conservative application of the Wednesbury decision have allowed them to hide from public scrutiny. (shrink)

The legal regulation of standards of medical practice has two main forms. The more direct of these comprises legislation and judicial precedents concerned with the delivery of medical care. Typically this form sets out the meaning of consent to treatment, establishes negligence thresholds and imposes duties of confidentiality. The second form of regulation is entrusted to a supervisory body, established by law and given jurisdiction to enforce standards of conduct by controlling entry to the profession and through the use of (...) disciplinary powers. (shrink)

As long as it remains mental health policy to offer care in the community rather than longterm hospitalisation, attention should focus on securing safe and supportive environments both for patients themselves and for their interactions with other members of the community. Yet such environments have proved hard to create and service users, providers and the wider public have recognised the isolation in which several patients live, the poor risk management, the lack of liaison between professionals, and state reluctance to resource (...) the policy. (shrink)