When a patient lacks decision-making capacity, then according to standard clinical ethics practice in the United States, the health care team should seek guidance from a surrogate decision-maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substituted judgment, then the team is to choose interventions that promote a patient’s best interests. We argue that, even when there is input from a surrogate, patient preferences should be an additional (...) source of guidance for decisions about patients who lack decision-making capacity. (shrink)

Nocebo effects occur when an adverse effect on the patient arises from the patient's own negative expectations. In accordance with informed consent, providers often disclose information that results in unintended adverse outcomes for the patient. While this may adhere to the principle of autonomy, it violates the doctrine of “primum non nocere,” given that side-effect disclosure may cause those side effects. In this article we build off previous work, particularly by Wells and Kaptchuk and by Cohen :3–11.[Taylor & Francis Online], (...) [Web of Science ®] [Google Scholar]), to suggest ethical guidelines that permit nondisclosure in the case when a nocebo effect is likely to occur on of the basis of nonmaleficence. We accept that that autonomy vis-à-vis informed consent must be forestalled, but salvage much of its role by elaborating a practical clinical approach to postencounter follow-up. In doing so, we reconcile a clinically practicable process of determining conditions of disclosure with long-standing ethical commitments to patients. (shrink)

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and (...) voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may reveal facts and values relevant to their child's treatment, encourage resistance to suboptimal default practices, improve adherence to treatment, nurture children's autonomy, and promote the interests of other family members. (shrink)

Background: Previous research shows that pediatricians inconsistently utilize the ethics consultation service (ECS). Methods: Pediatricians in two suburban, Midwestern academic hospitals were asked to reflect on their ethics training and utilization of ECS via an anonymous, electronic survey distributed in 2017 and 2018, and analyzed in 2018. Participants reported their clinical experience, exposure to formal and informal ethics training, use of formal and informal ethics consultations, and potential barriers to formal consultation. Results: Less experienced pediatricians were more likely to utilize (...) formal ethics consultation and more likely to have formal ethics training. The most commonly reported reasons not to pursue formal ECS consultation were inconvenience and self-reported expertise in pediatric ethics. Conclusions: These results inform ongoing discussions about ethics consultation among pediatricians and the role of formal ethics training in both undergraduate and graduate medical education. (shrink)

Children’s preferences about medical treatment—like the preferences of other patients—hold moral weight in decision-making that is independent of considerations of autonomy or best interests. In light of this understanding of the moral value of patient preferences, the American Academy of Pediatrics could strengthen the ethical foundation for its formal guidance on pediatric assent.

We agree with Emily Walsh (2020) that the current preferences of patients with dementia should sometimes supersede those patients’ advance directives. We also agree that consensus clinical ethics guidance does a poor job of explaining the moral value of such patients’ preferences. Furthermore, Walsh correctly notes that clinicians are often averse to treating patients with dementia over their objections, and that this aversion reflects clinical wisdom that can inform revisions to clinical ethics guidance. But Walsh’s account of the moral value (...) of the preferences of patients with dementia suffers from three major problems: (1) it does not engage the actual practices of clinical ethics; (2) it provides an inadequate account of why these patients’ preferences matter; and (3) it offers a poor explanation of clinicians’ intuitions in these cases. Her arguments engage a philosophical debate that is largely irrelevant to clinical practice and she therefore leaves pressing real-world clinical ethics questions unaddressed. After underscoring some of Walsh’s main points, we will discuss each of these shortcomings. (shrink)

The capacity to designate a surrogate is not simply another kind of medical decision-making capacity. A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC (...) for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases. That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions. There are no data in this work. (shrink)

Calls for incorporating social science into patient care typically have accounted for neither the logistic constraints of medical training nor the methodological fallacies of utilizing aggregate “social facts” in clinical practice. By elucidating the different epistemic approaches of artistic and scientific practices, this paper illustrates an integrative artistic pedagogy that allows clinical practitioners to generate social scientific insights from actual patient encounters. Although there is no shortage of calls to bring social science into medicine, the more fundamental processes of thinking (...) by which art and science proceed have not been addressed to this end. As such, the art of medical practice is conceptualized as an innate gift, and thus little is done to cultivate it. Yet doing so is more important than ever because uncertainty in diagnosing and treating chronic illnesses, the most significant contemporary mortality risks, suggests a re-expanding role for clinical judgment. (shrink)

Our purpose in this article is to identify and suggest resolution for two core problematics of grounded theory. First, while grounded theory provides transparency to one part of the conceptualization process, where codes emerge directly from the data, it provides no such systematic or transparent way for gaining insight into the conceptual relationships between discovered codes. Producing a grounded theory depends not only on the definition of conceptual pieces, but the delineation of a relationship between at least two of those (...) pieces. Second, the conceptualization process of grounded theory is done in hierarchical fashion, where individual codes emerge from the data but then are used to generate insight into more general concepts and thematic statements. But various works on grounded theory have failed to provide any systematic way of using data specific levels of scale (the codes) to gain insight into more macro levels of scale (concepts and themes). We offer fractal concept analysis as a means of resolving both of these issues. By using a logic structure generator, fractal concept analysis delineates self-similar conceptual frameworks at various levels of abstraction, yielding a method for linking concepts together within and between levels of scale encountered in the grounded theory coding and categorization process. We conclude that this fractal analytic technique can bolster the aims of grounded theory as a formalized and systematic process for generating theory from empirical data. (shrink)

Vaccine refusal forces us to confront tensions between many values, including scientific expertise, parental rights, children’s best interests, social responsibility, public trust, and community health. Recent outbreaks of vaccine-preventable and emerging infectious diseases have amplified these issues. The prospect of a coronavirus disease 2019 vaccine signals even more friction on the horizon. In this contentious sociopolitical landscape, it is therefore more important than ever for clinicians to identify ethically justified responses to vaccine refusal.

According to a standard account of patient decision-making capacity, patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical c...

Two core questions in pediatric ethics concern when and how physicians are ethically permitted to intervene in parental treatment decisions (intervention principles), and the goals or values that should direct physicians’ and parents’ decisions about the care of children (guidance principles). Lainie Friedman Ross argues in this issue of The Journal of Clinical Ethics that constrained parental autonomy (CPA) simultaneously answers both questions: physicians should intervene when parental treatment preferences fail to protect a child’s basic needs or primary goods, and (...) both physicians and parents should be guided by a commitment to protect a child’s basic needs and primary goods. In contrast, we argue that no principle—neither Ross’s CPA, nor the best interest standard or the harm threshold—can serve as both an intervention principle and a guidance principle. First, there are as many correct intervention principles as there are different kinds of interventions, since different kinds of interventions can be justified under different conditions. Second, physicians and parents have different guidance principles, because the decisions physicians and parents make for a child should be informed by different values and balanced by different (potentially) conflicting commitments. (shrink)

The field of clinical bioethics strongly advocates for the use of advance directives to promote patient autonomy, particularly at the end of life. This paper reports a study of clinical bioethicists’ perceptions of the professional consensus about advance directives, as well as their personal advance care planning practices. We find that clinical bioethicists are often sceptical about the value of advance directives, and their personal choices about advance directives often deviate from what clinical ethicists acknowledge to be their profession’s recommendations. (...) Moreover, our respondents identified a pluralistic set of justifications for completing treatment directives and designating surrogates, even while the consensus view focuses on patient autonomy. Our results suggest important revisions to academic discussion and public-facing advocacy about advance care planning. (shrink)

More than 20 years ago, the pioneering pediatric ethicist William Bartholome wrote a fiery letter to the editor of this journal because he thought a recently published statement on pediatric assent, from the Committee on Bioethics of the American Academy of Pediatrics (AAP), showed insufficient respect for children. That AAP statement, like its 2016 update, asserts that pediatric assent should be solicited only when a child’s dissent will be honored. Bartholome objected that pediatricians should always solicit children’s assent and that (...) they should acknowledge and apologize when they treat children over their objections even when they must do so to promote children’s best interests. We think Bartholome was right. In this brief commentary, we elaborate on his perspective about the moral value of pediatric assent, and we suggest improvements to the corresponding clinical guidance. (shrink)

The birth of our daughter nearly 5 years ago went very well. But in a new city, with some experience on our side and access to a homelike natural birth center connected to a major area hospital, we thought it would be all the better when our son was born. We hadn’t dreamed that the detection of a benign arrhythmia in the baby’s heart would cascade into a situation that would not only undermine our entire birth plan, but force unwanted (...) treatment and threats of abandonment. In this commentary, our intention is to illustrate the way in which narratives, and the commonalities between the stories shared by other authors in this issue and our own, can give profound depth and new insights into the things that happen to us. (shrink)

There is a perpetrator historiography of the Holocaust and a Jewish historiography of the Holocaust. The former has received the lion’s share of attention in bioethics, particularly in the form of warnings about medicine’s potential for complicity in human atrocity. However, stories of Jewish physicians during the Holocaust are instructive for positive bioethics, one that moves beyond warnings about what not to do. In exercising both explicit and introspective forms of resistance, the heroic work of Jewish physicians in the ghettos (...) and concentration camps tells us a great deal about the virtues and values of medicine. In this article, we frame the stories of four of these Jewish physicians in ways that are instructive for contemporary medicine. By far, the most widely recognized and discussed figure is Viktor Frankl, whose work on hope and the meaning of suffering remains essential insofar as medicine inherently confronts disease and death. Less discussed in bioethics and medical humanities are the cases of Mark Dworzecki, Karel Fleischmann, and Gisella Perl. Dworzecki’s efforts to encourage others in the Vilna Ghetto to document their experiences illustrates the power of narrative for the human experience and the notion of ethics as narrative in the face of suffering. Fleischmann’s art underscores not only the importance of reflective practices for professionals as a form of simultaneous introspection and testimonial, but illuminates hope amid sheer hopelessness. This hope, which was comparatively implicit in much of Fleishmann’s art, is explicated as a method by Frankl, becoming a form of therapy for both physicians wrestling with their professional work, and patients wrestling with their illnesses and diseases. Finally, Perl’s resistance to Mengele’s orders highlights the importance of moral action, not just reflective reaction. The experiences of each of these figures, while certainly located in the unique horrors of Holocaust Germany, portends lessons for today’s physicians faced with moral distress and ethical dilemma in the face of suffering, interpersonal relationships, and socio-political conflicts that increasingly test the professed ideals of medicine. In this article we briefly tell the story of each of these physicians and connect the lessons therein to contemporary medical practice. (shrink)