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.

What Do Psychiatrists Think About Caring for Patients Who Have Extremely Treatment-Refractory Illness?

Questions about when to limit unhelpful treatments are often raised in general medicine but are less commonly considered in psychiatry. Here we describe a survey of U.S. psychiatrists intended to characterize their attitudes about the management of suicidal ideation in patients with severely treatment-refractory illness. Respondents (n = 212) received one of two cases describing a patient with suicidal ideation due to either borderline personality disorder or major depressive disorder. Both patients were described as receiving all guideline-based and plausible emerging treatments. Respondents rated the expected helpfulness and likelihood of recommending each of four types of intervention: hospitalization, additional medication changes, additional neurostimulation, and additional psychotherapy. Across both cases, most respondents said they were likely to provide each intervention, except for additional neurostimulation in borderline personality disorder, while fewer thought each intervention would be helpful. Substantial minorities of respondents indicated that they would provide an intervention they did not think was likely to be helpful. Our results suggest that while most psychiatrists recognize the possibility that some patients are unlikely to be helped by available treatments, many would continue to offer such treatments.

Responding to the 'crowd' of voices and opinions in the paediatric clinical space: an ethics perspective.

Ready access to the internet and online sources of information about child health and disease has allowed people more 'distant' from a child, family and paediatric clinician to inform and influence clinical decisions. It has also allowed parents to share aspects of their child's health and illness to garner support or funding for treatment. As a consequence, paediatric clinicians must consider and incorporate the crowd of opinions and voices into their clinical and ethical reasoning.We identify two key ethical principles and related ethics concepts foundational to this task. We then propose a series of exploratory ethics questions to assist paediatric clinicians to engage ethically with the multiple voices in the clinical encounter while keeping the child's needs as a central focus. Using two clinical hypothetical case examples, we illustrate how our proposed ethics questions can assist paediatric clinicians to navigate the crowd in the room and bring moral reasoning to bear.We highlight a need for specific practical interactional skills training to assist clinicians to ethically respond to the crowd in the room, including to identify and weigh up the harms and benefits of endorsing or going against proposed treatments for a child, and how to discuss social media and online sources of information with parents.

Antiracism: An Ethical Imperative.

Pediatric ethicists hold a privileged position of influence within health care institutions. Such a position confers a corresponding responsibility to address barriers to the health and flourishing of all children. A major barrier to children's health is racism. Pediatric ethicists can, and should, leverage their position to address racism both in institutional policy and the provision of pediatric care. Health care's historical and continued contributions to fostering and sustaining racist values and systems mean that those within all medical fields- regardless of race, ethnicity, gender, age, or profession-should consider ways they can work to offset and ultimately dismantle those values and systems. Institutional policy is a critical mechanism propagating racism in hospitals and an area where ethicists have a unique perspective to bring antiracism into ethical analysis. Many institutional and organizational policies have unintended consequences, negatively impacting children and families who have been historically marginalized and oppressed. In this paper, we report and discuss existing policies, along with how they are implemented (procedures) and how they are conducted (practices), identified through a workshop during a pediatric subgroup meeting at an annual bioethics conference. We highlight the need to focus on these structural factors and reference scholarship that can be used to correct institutional policies that uphold white supremacy. We conclude with actionable, concrete recommendations for change.

Ethical Issues With Patient-Provider Interactions in an Evolving Social Media Landscape.

Billions of people use social media, including many patients, families, and providers. As social media has evolved, so have the challenges users face when choosing to share or view content. These challenges are even more complex when providers care for patients and families who post publicly about their experience in the medical system, especially when they have many followers. In this Ethics Rounds, we present a case of a resident physician caring for a medically complex child whose parent has hundreds of thousands of followers on her social media accounts where she posts details of her child's medical experience. The resident is considering viewing the parent's posts. An ethicist, a family advocate, and a pediatric resident provide commentaries. The first discusses issues of privacy, influencer culture, and decision-making. The second addresses communication and the difficulties families face as they interact with the medical system. The third discusses outdated policies and risks to the therapeutic relationship. The commentators generally agree that it is preferable for providers to discuss their concerns with patients or parents/guardians directly rather than view their social media surreptitiously. Although there may be some benefits to viewing someone's posts, such as gaining a better understanding of their life at home, it would be best for the provider to view them with the patient/parent to allow them to provide context.

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.

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.

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.

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.

Exploring the Ethics of the Parental Role in Parent-Clinician Conflict.

In pediatric health care, parents and clinicians sometimes have competing ideas of what should be done for a child. In this article, we explore the idea that notions of what should be done for a child partly depend on one's perception of one's role in the child's life and care. Although role-based appeals are common in health care, role-differentiated approaches to understanding parent-clinician conflicts are underexplored in the pediatric bioethics literature. We argue that, while the parental role is recognized as having social content or value, and sometimes legal force, it is not always recognized as having ethical content or value, as the clinician's role is. We draw together key insights from the normative and empirical literature on parental roles to show how a role-based lens might inform clinicians' and clinical ethicists' approach to cases in which parents and clinicians disagree.

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.

Pediatric Authenticity: Hiding in Plain Sight.

The range of decisions considered permissible in pediatrics is typically understood to involve a balance between patient interests and parental or surrogate authority. In this article, we argue that there is a distinct set of considerations relevant to pediatric decision-making that is often neglected or unacknowledged in pediatrics-namely, considerations related to patient authenticity. The standard of pediatric authenticity asks not what is best for the patient or what the patient would choose but, rather, what is most consistent with who the patient is. We begin the article with an overview of the best interest standard and suggest that authenticity can elucidate considerations that fall between a child's strictly medical interests and broader familial or relational interests. Next, we discuss authenticity in greater detail, noting the limits of applying certain philosophical conceptions of authenticity in pediatrics. We then sketch our own account of pediatric authenticity and distinguish it from the related concepts of subjective interests and assent. We conclude with a discussion of three cases illustrating the normative significance of authenticity in a range of situations arising in pediatric medicine.

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.

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.