Do Reasons Matter? Navigating Parents' Reasons in Healthcare Decisions for Children.

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.

Is Suffering a Useless Concept?

"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.

Beyond the Hospital Walls: The Role of the Ethicist in Community Healthcare Settings.

AbstractCommunity-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.

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.

Bioethics and the Moral Authority of Experience.

While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion.

The Fraught Notion of a "Good Death" in Pediatrics.

In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, between accounts of a good death that minimally and maximally promote the dying child's interests. I propose a narrowed account of the dying child's interests, because they differ from the interests of non-dying children. Importantly, this account illustrates how disagreements at the end of a child's life are sometimes the result of a shift from a future to a present-oriented understanding of the child's interests on the part of some stakeholders but not others, and sometimes the result of a values-based disagreement about how different interests should be weighted. This brings into sharper focus the questions of for whom, and in what way, a child's death might be considered good.

Consistently Inconsistent: Does Inconsistency Really Indicate Incapacity?

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.

Two Minds, One Patient: Clearing up Confusion About "Ambivalence".

Patients who experience difficulty making medical decisions are often referred to as "ambivalent." However, the current lack of attention to the nuances between a cluster of phenomena that resemble ambivalence means that we are not always recognizing what is really going on with a patient. Importantly, different kinds of "ambivalence" may call for different approaches. In this paper, we present a taxonomy of ambivalence-related phenomena, provide normative analysis of some of the effects of-and common responses to-such mental states, and sketch some practical strategies for addressing ambivalence. In applying lessons from the philosophical literature and decision theory, our aim is to provide ethicists and clinicians with the tools to better understand and effectively intervene in cases of ambivalence.

Killing in the name of: A merciful death?

"Mercy" holds a well-established place in the discourse on assisted death (AD), with mercy rhetoric used by both proponents and opponents of AD alike. In this paper, I interrogate the relationship between mercy, mercy killing and AD. Appeals to mercy introduce an ambiguity that carries implications for the enduring debate about healthcare professionals' participation in this controversial practice. The term "mercy killing" is used at different times to mean all of the following: killings that are acts of punitive leniency, killings motivated by pity, killings motivated by compassion, and acts of voluntary, involuntary and nonvoluntary euthanasia. I argue that killings that are acts of punitive leniency "track" a conceptually useful understanding of mercy and, by extension, mercy killing. However, if mercy is understood in this way, then "mercy killing" is a problematic way of characterizing physician-AD. While reference to mercy killing has been weeded out of AD legislation over time, the same cannot be said of public discourse, where the debate about physicians' character-and the locus of power with respect to who gets to decide when a life can rightly be ended-continues.

Building Effective Mentoring Relationships During Clinical Ethics Fellowships: Pedagogy, Programs, and People.

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.

Healthcare organizations and high profile disagreements.

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.

Variation in Clinical Ethics Fellowship Programs: Lessons from the Field.

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.

Two's company, is three a crowd? Ethical cognition in decision making and the role of industry third parties in pediatric diabetes care.

Families of children with diabetes increasingly obtain health information from a variety of sources. Doctor-patient relationships have accordingly become more fluid and dynamic with input from other parties. These outside parties include representatives from the diabetes health care industry-industry third parties (ITPs). This review is an exploration of the ethical principles and cognitive processes involved when doctors and patients negotiate around health care practices and the role of ITPs in that dialogue. Ethical principles of conflicts of interest, beneficence (act in the best interests of the patient), non-maleficence (act so as to do no harm) and justice (act so as to allocate resources fairly or justly) are relevant considerations. Reflexive and analytic thinking and various cognitive biases also play a significant part in clinical decision making. A complex case example is analyzed to highlight a process of ethical cognition in decision making to ensure high-value care and optimal patient outcomes.

Ethical Considerations in Multiple Pregnancy: Preterm Delivery in the Setting of Discordant Fetal Anomaly.

Planning for the preterm birth of a fetus with known anomalies can raise complex ethical issues. This is particularly true of multiple pregnancies, where the interests of each fetus and of the expectant parent(s) can conflict. In these complex situations, parental wishes and values can also conflict with the recommendations of treating clinicians. In this article, we consider the case of a dichorionic twin pregnancy complicated by the diagnosis of vein of Galen aneurysmal malformation (VGAM) in one of the twins at 28 weeks' gestation. Subsequent deterioration of the affected twin prompted the parents to request preterm delivery to prevent the imminent in-utero demise of the affected twin. However, given the associated risks of prematurity, complying with the parents' request may have disadvantaged the health and wellbeing of the unaffected twin. This article canvases the complex ethical issues raised when parents request preterm delivery of a multiple pregnancy complicated by a fetal anomaly in one twin, and the various ethical tools and frameworks that clinicians can draw on to guide their decision-making in such cases.

Medical crowdfunding and the virtuous donor.

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.

Anticipation, Accompaniment, and a Good Death in Perinatal Care.

The ethics of perinatal care, and the experiences of families who receive such care, remains a nascent area of inquiry. It can be hard to see how existing "good death" constructs apply to the experiences of fetal patients and their families. In this paper, we explore two themes raised by a case at our fetal health center: anticipation and accompaniment. In this case, a mother presented to our fetal health center; her unborn son, our fetal patient, was diagnosed with life-threatening hypoplastic left heart syndrome and endocardial fibroelastosis. The parents were told that their son's life expectancy, upon birth, was short. For us, this case raised important questions around what sorts of things we might, together with the family, anticipate with respect to their son's birth and death, and what it meant to really accompany this family on their journey. Alongside conventional lessons in the philosophical literature and palliative care practice, the process of anticipating together and of mutual accompaniment helped us to guide this family to what they ultimately determined to be a good death for their son.