Bryanna Moore

Background Accepted ethical principles in pediatrics hold that parents’ reasons should not matter to determining ethical boundaries: it is the decision’s effect on the child that matters. However, there is ongoing discussion surrounding what ethical weight, if any, should be granted to parents’ reasons in decisions for their children and, to our knowledge, no empirical research focused on these questions. Refusal in pediatric oncology represents a particularly useful case in which to test these ethical principles. Understanding the influence of parents’ reasons on treatment disagreements is important to assessing alignment between ethical guidance and clinical practice, determining whether intervention principles in pediatric ethics require revision, and mitigating implicit bias in clinicians’ and ethicists’ ethical judgments.Methods This was an exploratory, pilot qualitative study. Data was collected through semi-structured interviews with pediatric oncologists (n = 9) and clinical ethics consultants (n = 9), organized around two hypothetical cases of treatment refusal in pediatric oncology. Transcripts were coded in MAXQDA and analyzed using inductive content analysis.Results Participants agreed that it was important to engage with parents’ reasons in the context of decisions for the child. Three main themes emerged from the interviews: 1) parents’ reasons are not ethically relevant to assessments of harm, determinations of medical neglect or abuse, and decisions to seek state intervention; 2) parents’ reasons matter in other ways, including being instrumentally or intrinsically valuable; and 3) religious and mistrust-based reasons evoke different responses.Conclusions Our findings suggest there is, in principle, a strong commitment among pediatric oncologists and ethicists to conventional ethical guidance, especially the harm principle. Participants emphasized the instrumental value of engaging with parents’ reasons, including how exploring parents’ reasons can facilitate practical strategies for resolving disagreements. Our findings also suggest there may be some role-based differences in participants’ views about the value of engaging with parents’ reasons.

From aggressive billing practices to neglectful or discriminatory care, news stories about the misconduct of healthcare organizations abound. Yet there has been limited ethical scrutiny of hospitals and other healthcare organizations in the bioethics literature. In this paper, we explore what philosophy and organizational theory can offer in terms of concepts for articulating the obligations of healthcare organizations, specifically hospitals. We highlight how the concepts of institutional agency and responsibility, administrative harms and burdens, and communicative blame provide theoretical resources that can help bioethics get closer to a more robust organizational ethics. We advance two claims: first, these concepts help us make sense of how hospitals or healthcare organizations—not just individuals and the broader systems they operate within—can be morally responsible or blameworthy. Second, critical reflection on these concepts as they apply to several historical examples suggest some prima facie obligations of organizations that provide patient care.

Abstract“Suffering” is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which “suffering” is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are often getting at something ethically important. But this is where the work of ethics begins, not where it ends.

While patients have the right to control who has access to their health information and designate visitors, it is not always clear whether—when a patient lacks capacity—their surrogate also exercises such rights. States and federal laws are often vague about the limits of surrogate authority. Even where legal or institutional guidance on this issue is clear, requests by surrogates to withhold information or restrict visitation with a patient can be a source of ethical uncertainty and distress on the part of the clinical team. This paper explores the ethical issues raised by such requests. To date, there has been little exploration of this issue in the clinical ethics literature. First, we summarize the scant existing ethical and legal guidance on this issue. Second, we present two potential approaches to navigating requests from surrogates to withhold information or restrict visitation. Third, we discuss the merits and limitations of both approaches, and introduce some additional considerations that further complicate the picture. We argue for a flexible restrictive approach to information-sharing, and a constrained permissive approach to visitation. Finally, we propose several considerations that clinicians and clinical ethicists might think through in these situations to help guide their practice.

Community-based “free” clinics can be a key site of primary and preventive care, especially for underserved members of the community. Ethical issues arise in community clinics. Despite this—and the fact that ethics consultation is a well-established practice within hospitals—ethics support is rarely integrated within community clinics, and the clinical ethicist’s role in community care settings remains unexplored. In this article I explore what community-engaged practice might look like for the clinical ethicist. I share my experience of being invited into a local community clinic where a team of volunteers, in partnership with a local church, provide care to persons experiencing housing and food security in our county. First, I outline some of the key ethical issues we encounter in our clinic, including how to promote the agency of community members, develop shared standards for clinic volunteers, and balance different values and priorities within the partnership. Second, I explore how the ethicist’s knowledge and skills translate into this setting. I argue that, given the range of ethical issues that arise in community clinics and the need for ongoing dialogue, education, and critical reflection within such partnerships, there is a role for the clinical ethicist in this space. I discuss how clinical ethicists might begin to develop community-based partnerships and practices.

In April 2024, the United States Food and Drug Administration approved the first digital application to treat major depression in adults 22 and older.1 The app—Rejoyn—joins a growing list of artificial intelligence (AI)-based platforms designed to treat mental illness.2 These tools range from chatbots to gamified cognitive behavioral therapy (CBT), to machines that emulate human therapists. Given the significant barriers to accessing mental health care, these technologies have been pitched as a means of addressing the current mental health crisis among youth.3 Although there is a growing literature exploring the ethical implications of the use of AI in mental health care, their use in pediatric populations remains underexplored. This commentary explores the use of large language model (LLM)-based digital applications in pediatric mental health care, with the goal of beginning to map this terrain. LLMs are a form of AI designed to generate human-like responses to natural language prompts. These models use deep learning techniques, specifically transformer architectures, to analyze patterns in language and create coherent, contextually relevant responses. We will refer to LLM-based “conversational agents” colloquially as “therapy bots” or “AI chatbots” interchangeably throughout. These are systems that use LLMs, or other advanced natural language processing systems, to simulate the utterances of a human therapist as part of a conversation with a pediatric patient.

Within bioethics, two issues dominate the discourse on suffering: its nature (who can suffer and how) and whether suffering is ever grounds for providing, withholding, or discontinuing interventions. The discussion has focused on the subjective experience of suffering in acute settings or persistent suffering that is the result of terminal, chronic illness. The bioethics literature on suffering, then, is silent about a crucial piece of the moral picture: agents’ intersubjectivity. This paper argues that an account of the intersubjective effects of suffering on caregivers could enrich theories of suffering in two ways: first, by clarifying the scope of suffering beyond the individual at the epicenter, i.e., by providing a fuller account of the effects of suffering (good or bad). Second, by drawing attention to how and why, in clinical contexts, the intersubjective dimensions of suffering are sometimes as important, if not more important, than whether an individual is suffering or not.

The recent legal dispute about medical treatment for a 19-year-old patient, Sudiksha Thirumalesh, (known initially by the Court of Protection as ‘ST’) in A NHS Trust versus ST & Ors (2023) raised several challenging ethical issues. While Sudiksha’s case bears similarities to other high-profile cases in England and Wales, there are key differences. Crucially, Sudiksha herself was part of the disagreement. She was alert, communicative and sought to advocate for herself. Furthermore, this case was framed in the courts as pivoting not on considerations of best interests but on a determination of decisional capacity. Sudiksha was deemed to lack capacity because she did not believe her doctors’ view of her prognosis. While the legal questions in the case were central to a recent Court of Appeal decision (which overturned the original finding), in this commentary, we focus on the ethical questions therein. We start by describing Sudiksha’s court case and the initial judgment. We then offer an ethical analysis of the relationship between false beliefs, values and the ‘capacity’ to make decisions, arguing for a need for particular care when judging patients to lack capacity based purely on ‘false and fixed beliefs’. After briefly noting the legal basis for the appeal finding, we offer ethical implications for future cases. Although it appears that Sudiksha had decision-making capacity, this did not settle the ethical question of whether health professionals were obliged to continue treatment that they believed to have no prospect of success.

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons are irrelevant to whether a decision is permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation.

Given the enduring debate over what constitutes quality, and therefore appropriate training, in clinical ethics consultation, it is unsurprising that there is variation in the structure and content of clinical ethics fellowship programs. However, this variation raises questions about the value of fellowship training when the ethicists that emerge from these programs might be quite different. The specifics of fellowship programs are largely internal. As such, the extent of variation and whether such variation is problematic remains unclear. In this article, we summarize lessons learned from discussions between fellows, their mentors and program directors at the 2020 Clinical Ethics UnConference, and outline some possible ways to advance the conversation about variation in fellowship programs and training. We argue for the more open sharing of training specifics in order to help break down the siloed nature of fellowship programs. Greater transparency could, firstly, allow for more robust reflection on and refinement of training practices and, secondly, allow us to better balance professionally appropriate consistency with unavoidable or desirable variation based on local norms, culture and leadership.

Abstract“Suffering” is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which “suffering” is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are often getting at something ethically important. But this is where the work of ethics begins, not where it ends.

How should clinical ethicists be trained? Scholars have stated that clinical ethics fellowships create well-trained, competent ethicists. While this appears intuitive, few features of fellowship programs have been publicly discussed, let alone debated. In this paper, we examine how fellowships can foster effective mentoring relationships. These relationships provide the foundation for the fellow’s transition from novice to competent professional. In this essay, we begin by discussing our pedagogical commitments. Next, we describe the structures our program has created to assist our fellows in becoming competent ethicists. We then outline the kinds of knowledge, skills, and professional attributes mentors should possess. Following this, we focus on the knowledge, skills, and professional attributes that fellows develop as they co-create effective mentoring relationships. We will not prescribe a single approach to fellowship training; instead, our perspective will, we hope, become a catalyst for further conversation on training and mentoring clinical ethics fellows.

Dominic Wilkinson suggests that one of Schubert’s songs has relevance for neonatologists today. In the song, Schubert suggests that death sometimes comes as a friend. Wilkinson ponders whether the song has a message for doctors and parents, who sometimes struggle to figure out whether death is an enemy or a friend to a dying baby. Wilkinson reflects on the case of baby ‘Hal’, who was born with serious cardiomyopathy. Hal’s parents and doctors disagree about whether to withdraw life-support. Through his recreations of their discussions, Wilkinson shows how hard it is to confront—and maybe even welcome—death for a child. While adults often frame their own decision to forego life-sustaining treatment with thoughts that they have lived a good life, death in childhood can seem unfair because it robs the child of their opportunity to live a good or completed life. Much as we try, we cannot really imagine what a critically ill neonate experiences or desires. We have very little insight into Hal’s interests or subjective experience. Without direct access to the child’s experience, it is impossible to know whether, like an adult, a child would choose to allow death to occur. We cannot verify the claim that the child’s death was good in the sense that it was good for them. Wilkinson proposes that a prolonged dying process …

While it is not explicitly included in capacity assessment tools, “consistency” has come to feature as a central concern when assessing patients’ capacity. In order to determine whether inconsistency indicates incapacity, clinicians must determine the source of the inconsistency with respect to the process or content of a patient’s decision-making. In this paper, we outline common types of inconsistency and analyze them against widely accepted elements of capacity. We explore the question of whether inconsistency necessarily entails a deficiency in a patient’s capacity. While inconsistency may count as prima facie evidence of incapacity—enough evidence to justify a closer look—when making such determinations, it is important for clinicians to slow down, inquire about the reasons underlying the inconsistency and clearly show which of the elements of capacity the patient fails to satisfy.

I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. She pleaded with me, “You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her.” Madeleine, who was twenty‐four years old, was dying of end‐stage acute myeloid leukemia and was intubated in one of our intensive care units. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment—in my world of clinical ethics consultation, routine stuff. Except that, in March 2020, nothing was routine anymore. The Covid‐19 pandemic calls for creative thinking about ad hoc and post hoc bereavement efforts, and it may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients’ and families’ experiences at the end of life during a pandemic.

The moral status of the emotion of grief has garnered little recognition in philosophical literature. Existing inquiry has consisted for the most part of deontological and virtue ethical approaches to evaluating grief. In my paper I build upon established understandings of the morality grief and move beyond them, towards an understanding of what I call “eros-transformative grief” as a gateway or intermediary emotion that enables a powerful reassessment and revaluation of the self’s relation to the world. This fundamental moral revaluation is a result of the phenomenological absence of the relational self. The nature of grief reveals something vital about the way in which we relate to those around us—it is a fundamental reaffirmation of the inescapable separateness of the self, which can never truly be accepted without experiencing deep loss, but it is also a fundamental reaffirmation of the relationship that existed, and ultimately, of love. In eros-transformative grief, part of the grieving process involves accepting the permanency of our loss and moving past it through assimilating an intangible part of the lost loved one into the self. Thus, in addition to strengthening deontological and virtue ethical normative understandings of grief, I provide an account of eros-transformative grief that links it to the concept of love, allowing for a positive reading of an oft-neglected emotion.

Clinical ethics services are increasingly receiving case referrals regarding requests for access to experimental therapies. Sometimes, patients or families seek access to an experimental therapy that has not been subsidised by any government scheme, and for which no local clinical trial is underway. All else being equal, a patient may benefit from receiving an experimental therapy without making any other patient worse off. However, within public healthcare systems, treating only one patient with an experimental therapy, when others might also benefit from it, evokes a troubling sense of inequity. In this paper, I examine the relevance of Pareto principles and the ‘levelling down’ objection to ethical deliberation about patient or family-initiated requests for experimental therapies. While facilitating access to an experimental therapy may benefit a patient without making any other patients worse off, this does not dispel ethically relevant considerations concerning equity. When deliberating about cases i...

In this paper, we examine healthcare organizations’ responses to high profile cases of doctor–parent disagreement. We argue that, once a conflict crosses a certain threshold of public interest, the stakes of the disagreement change in important ways. They are no longer only the stakes of the child’s interests or who has decision‐making authority, but also the stakes of public trust in healthcare practitioners and organizations and the wide scale spread of medical misinformation. These higher stakes call for robust organization‐level responses. There are responsible and thoughtful ways for healthcare organizations to directly engage with these cases. Hospitals should seek an alliance with the parents around the goal of public discussion and utilize web‐based platforms to provide the public with information about medical conditions, experimental treatments, and how clinical ethics deliberation in hospitals works. We outline five important lessons for healthcare organizations to keep in mind when responding to such cases. Approached with care, these cases could become “teachable moments” for both healthcare organizations and society.

Patients and families are increasingly turning to crowdfunding to help them cover the cost of medical care. The ethics of crowdfunding has garnered some attention in the bioethical literature. In this paper I examine an ethical aspect of medical crowdfunding (MCF) that has received limited attention: the role of donors. I defend a virtue ethical approach to analyzing the role of donors in MCF. Vicious donation, where donors do not exercise the relevant virtues, can compound some of the ethical risks associated with MCF, as seen in the several recent, high‐profile cases. My primary contention in this paper is that encouraging donors to think about how donating to a particular campaign would measure against the virtues I outline could help to discourage acts of ethically problematic donation to MCF campaigns.

‘Why Not Common Morality?’ revisits an important and enduring question: is medical ethics distinct from ‘everyday’ ethics? In her paper, Rosamond Rhodes undertakes the ambitious project of answering this question, in addition to clarifying what constitutes a profession, how professions differ from ‘roles’ and how medical ethics relates to medical professionalism. Rhodes aims to challenge the status quo within medical ethics by departing from the views of certain giants within the field. The paper’s central contention is that the ethics of everyday life and medical ethics are indeed distinct—the latter cannot be derived from the former and we consequently need a new theory of medical ethics. While I am sympathetic to the aims of the project and took no small delight in Rhodes’s gumption, the paper suffers from a number of issues. Putting aside the issue of whether Rhodes accurately represents the theories she critiques—and that is no small thing to set aside—first, many scholars have interrogated in great depth, and from many angles, the relationship between common morality and medical ethics.1–4 Scholarship from the philosophy of medicine, virtue ethics, role-differentiated ethics, narrative and care ethics has made a significant contribution to the projects of clarifying what is distinct about medical professionalism and understanding how we might subsequently treat ethical issues that arise in healthcare with due sensitivity to these myriad differences.5–10 Yet, Rhodes largely ignores this literature …

Tim Wardle’s 2018 documentary film Three Identical Strangers is an exploration of identity, family, and loss. It’s also about nature versus nurture and the boundaries of ethically permissible research, particularly research involving children. The film tells the story of identical triplets who were separated soon after birth in 1961. A different family adopted each boy, without being told that their son had two identical brothers. The adoption agency responsible for finding the families was collaborating with a group of researchers working on a study about … something. Three Identical Strangers details the boys’ fight to obtain information about the study and for closure. But while the film may have received rave reviews, it left us feeling uneasy. We came away with two sets of questions, one having to do with the story that the film documents and the second with the ethics of filmmaking itself.

While it is not explicitly included in capacity assessment tools, “consistency” has come to feature as a central concern when assessing patients’ capacity. In order to determine whether inconsistency indicates incapacity, clinicians must determine the source of the inconsistency with respect to the process or content of a patient’s decision-making. In this paper, we outline common types of inconsistency and analyze them against widely accepted elements of capacity. We explore the question of whether inconsistency necessarily entails a deficiency in a patient’s capacity. While inconsistency may count as _prima_ _facie_ evidence of incapacity—enough evidence to justify a closer look—when making such determinations, it is important for clinicians to slow down, inquire about the reasons underlying the inconsistency and clearly show which of the elements of capacity the patient fails to satisfy.