Climates of Distrust in Medicine.

Trust in medicine is often conceived of on an individual level, with respect to how people rely on particular clinicians or institutions. Yet as discussions of trust during the Covid-19 pandemic highlighted, trust decisions are not always as individual or interpersonal as this conception suggests. Rather, individual instances of trusting behavior are related to social trust, which is conceived as a willingness to be vulnerable to people in general, based on a sense of shared norms. In this essay, I propose that individual and social trust are connected to each other in what can be termed a "climate of trust." I explain how masking trends during the pandemic facilitated a "climate of distrust," and I consider the role that clinicians might play in transforming climates of distrust into climates of trust.

Deep Brain Stimulation for Substance Use Disorders? An Exploratory Qualitative Study of Perspectives of People Currently in Treatment.

OBJECTIVE: Although previous studies have discussed the promise of deep brain stimulation (DBS) as a possible treatment for substance use disorders (SUDs) and collected researcher perspectives on possible ethical issues surrounding it, none have consulted people with SUDs themselves. We addressed this gap by interviewing people with SUDs. METHODS: Participants viewed a short video introducing DBS, followed by a 1.5-hour semistructured interview on their experiences with SUDs and their perspective on DBS as a possible treatment option. Interviews were analyzed by multiple coders who iteratively identified salient themes. RESULTS: We interviewed 20 people in 12-step-based, inpatient treatment programs (10 [50%] White/Caucasian, 7 Black/African American [35%], 2 Asian [10%], 1 Hispanic/Latino [5%], and 1 [5%] Alaska Native/American Indian; 9 women [45%], 11 men [55%]). Interviewees described a variety of barriers they currently faced through the course of their disease that mirrored barriers often associated with DBS (stigma, invasiveness, maintenance burdens, privacy risks) and thus made them more open to the possibility of DBS as a future treatment option. CONCLUSIONS: Individuals with SUDs gave relatively less weight to surgical risks and clinical burdens associated with DBS than previous surveys of provider attitudes anticipated. These differences derived largely from their experiences living with an often-fatal disease and encountering limitations of current treatment options. These findings support the study of DBS as a treatment option for SUDs, with extensive input from people with SUDs and advocates.

Shared Decision-Making in Palliative Care: A Maternalistic Approach.

During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches.

Responsibility for Structural Racism in Medicine: Reflections and Recommendations from One Institution.

In this article, we draw upon recent ethical arguments by Zheng and Young to explain our experience applying the social connection model of responsibility to structural racism in medicine. We propose that taking responsibility for structural racism must begin with acknowledging, studying, and learning from localized, particular instances of racism. Such practices raise personal and institutional consciousness about racism and injustice, creating a knowledge base from which effective action is possible. We describe our experiences engaging with responsibility for structural racism as a small group of scholars dedicated to learning more about our institution's history and our own agency in altering its future trajectory. Our learning and introspection were developed over multiple sessions in the 2019-2020 academic year when the authors participated in a Medical Ethics Forum Fellowship.The Medical Ethics Forum Fellowship (the Forum) of the Medical University of South Carolina (MUSC) is composed of a diverse group of interdisciplinary faculty members, students, and practicing health professionals. The precise membership of the group changes every year, with a number of members continuing for multiple years. Each academic year the Forum focuses on a specific bioethical issue of current interest. Our focus for the academic year 2019-2020 was race and ethnicity in 21st century health care. This paper is the result of our year-long deliberations based on study of the relevant literature, monthly discussions, as well as personal presentations and discussions with nationally known scholars in this field.

The Hang Up.

Over the past year, our ethics service has had numerous consultations involving patients who use the emergency department for regular dialysis. Sometimes, they have access to outpatient hemodialysis that they forgo; other times, they've been "fired" from this kind of outpatient facility, and so the ED is their last option. In most of these cases, we're called because the patient is disruptive once admitted to the ICU and behavior plans haven't helped. But the call from a resident this March 2020 morning was different, the patient had end-stage renal disease and often missed hemodialysis, but he wasn't disruptive. "It's just that he comes in after using cocaine, and given scarcity with the coronavirus and ICU beds…." I have come to think that this is one of the more insidious effects of the pandemic: that there will be a resurgence of the view that some patients deserve health care by virtue of their compliant behavior and that those who are nonadherent don't.

Trust, Risk, and Race in American Medicine.

There is ample evidence that patient mistrust toward the American medical system is to some extent associated with communal and individual experiences of racism. For groups who have faced exploitation and discrimination at the hands of physicians, the medical profession, and medical institutions, trust is a tall order and, in many cases, would be naive. Nevertheless, trust is often regarded as a central feature of the physician-patient relationship. In this article, I draw on empirical research, ethical theory, and clinical cases to propose one way that providers might address and, ideally, resolve mistrust when it arises in an immediate case. I describe how medical mistrust has been characterized empirically within medical and bioethics scholarship, and I provide an overview of theories of trust, arguing that they may be unable to account for the risks that providers must take in seeking to establish trust within many American medical institutions. Common assumptions in medical and bioethical scholarship on trust notwithstanding, caring and competence are not always enough to establish a trusting relationship between physician and patient. I suggest that, in an atmosphere of mistrust, comprehension of the existence and source of suspicion is essential to effective signaling of trustworthiness.

Keeping Disability in Mind: A Case Study in Implantable Brain-Computer Interface Research.

Brain-Computer Interface (BCI) research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design (UCD). The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers' experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome (or even encourage) end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is "good enough" for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering.

Uncovering Metaethical Assumptions in Bioethical Discourse across Cultures.

Much of bioethical discourse now takes place across cultures. This does not mean that cross-cultural understanding has increased. Many cross-cultural bioethical discussions are marked by entrenched disagreement about whether and why local practices are justified. In this paper, I argue that a major reason for these entrenched disagreements is that problematic metaethical commitments are hidden in these cross-cultural discourses. Using the issue of informed consent in East Asia as an example of one such discourse, I analyze two representative positions in the discussion and identify their metaethical commitments. I suggest that the metaethical assumptions of these positions result from their shared method of ethical justification: moral principlism. I then show why moral principlism is problematic in cross-cultural analyses and propose a more useful method for pursuing ethical justification across cultures.