AJOB Empirical Bioethics最新文献

Background: Nudging is a behavioral economics concept that describes subtle influences on decisions without restricting options or altering incentives. Though commonly studied in public health, the ethical implications in pediatric critical care are underexplored. This study investigates pediatric intensivists' perspectives on the ethical permissibility of three nudging techniques-framing, saliency, and default.

Methods: This is a multi-center survey of pediatric intensivists in which a sample of physicians were presented with 4 clinical scenarios representing framing, saliency, and default nudges. Responses about ethical permissibility for each scenario were assessed via Likert Scale and free text. Physician and institutional demographics were also collected. Data was collected in REDCap and analyzed using descriptive statistics for demographic data and scenario responses, with median and interquartile ranges (IQR) reported for Likert scale variables. Comparative and correlational analyses evaluated relationships between ethical permissibility, participant characteristic, and responses to nudging techniques across the scenarios.

Results: 402 surveys were distributed with 132 (33%) completed. Results show a wide range in ethical permissibility of nudging techniques with the widest variability in the application of saliency. An equal number of physicians found negative framing to be "not at all" ethically permissible as "extremely" ethically permissible. Negative saliency showed a statistically significant positive correlation with how often the physician uses the technique, and how much that physician believes saliency affects the family's choice. There was also case-dependent variation in ethical permissibility with negative saliency found to be more ethically permissible in severe traumatic brain injury and positive saliency viewed as more ethically permissible when considering tracheostomy. Qualitatively, variable responses were given for each technique. Intensivists reported a wide range of use of nudging techniques.

Conclusions: Our study suggests there is wide variability in nudging utilization and perceived ethical permissibility. The use of framing, saliency, and default communication techniques is nuanced and further understanding of choice architecture is essential to understand how physicians can optimally engage in shared decision-making with families.

When clinical trials fail to enroll diverse study populations, a multitude of consequences can occur, including compromised validity and generalizability, safety and efficacy uncertainties, regulatory limitations, widened disparities, distrust in science and medicine, and undermined efforts to address urgent health needs. We developed the Representative Studies Rubric (RSR), a questionnaire that evaluates the extent to which clinical trials are designed to enroll representative study populations with a focus on age, ethnicity, drug use, gender, pregnancy, race, and sex assigned at birth. We used the RSR to conduct an analysis of all active studies in the NIH-funded HIV/AIDS Clinical Trials Networks (Networks) and identified patterns of research practices that may limit the participation of underrepresented populations, with ethical implications. The Networks subsequently formalized the RSR as a required protocol development tool for all future studies to correct exclusionary research practices with the goal to achieve more representative study populations.

Background: The experiences of clinical ethicists have recently begun to garner some attention, but very little is known about the emotional impact of clinical ethics work on clinical ethicists. The purpose of our study was to explore the experiences of clinical ethicists in the United States in order to better understand the impact that their professional responsibilities have on them as people, as well as to learn about the ways in which organizational structures and coping mechanisms help them navigate the emotional impact of their work.

Methods: This was a primary analysis of 34 semi-structured interviews with clinical ethicists across the United States. The interviews were conducted from May-September 2023 and were recorded, transcribed, and de-identified. The qualitative themes explored in this paper are part of a larger study informed by principles derived from grounded theory.

Results: Four major themes emerged: particular features of clinical ethics work seem to significantly impact the emotional state of clinical ethicists, lack of clarity about the role of clinical ethicists appears to significantly impact their emotional experience, organizational structures appear to shape clinical ethicists' professional and emotional experiences, and clinical ethicists employ a variety of professional and personal coping mechanisms when experiencing adverse emotions because of their professional responsibilities.

Conclusion: Our findings suggest that clinical ethicists are profoundly impacted by their work and that their emotional experience is shaped by a wide range of factors both at the individual and systemic level.

Background: With increased emphasis on healthcare transparency, parents are increasingly asking to be present for procedures performed on their children, especially in high-acuity contexts like care of children with congenital heart disease (CHD), where procedures may inform critical care decisions. In addition, observations of complex care may better communicate clinical knowledge and benefit grieving after adverse events. We examined clinicians' views on current family presence (FP) efforts and on the expansion of FP to include the observation of operative procedures.

Methods: This is a qualitative study using semi-structured interviews and content analysis within a pediatric heart center. Participants included perioperative and ICU nurses, physicians, advanced practice providers, and child life specialists. Interviews were recorded, transcribed, and analyzed using inductive content analysis.

Results: Twenty provider interviews were conducted; 70% had less than 10 years of experience, with 30% having between 10 and 20 years; 50% were physicians who work in procedural environments; 25% were nurses; 15% were advanced practice providers; 10% were child-life specialists. Four categories emerged: (1) positive impact of FP, (2) negative impact of FP, (3) limitations to achieving FP, and (4) policies and procedures for FP.

Conclusion: Participants reported that current FP uses reduce patient anxiety and improve patient safety, family understanding of clinical decisions, and coping. Drawbacks include parental interference in care, lack of protocols to guide FP, increased family/staff anxiety, lack of staff resources to support FP, and potential access limitations for diverse populations. Participants anticipated that these problems would occur with the expansion to intraoperative FP.

It is increasingly common for bioethicists to consult with the public to solicit their judgments and attitudes about ethical questions and issues, especially ones that arise with new and emerging technologies. However, it is not always clear what the purpose of this engagement is or ought to be: do bioethicists seek the input of the public to help them arrive at a morally correct justified policy position, or do they seek this input to help them shape and frame their already-established moral position, or something else entirely? In this essay, we discuss four distinct possible functions of collecting moral judgments from the public: issue spotting, messaging for adherence and social stability, substantive moral guidance, and procedural fairness. For each function, we offer core examples from the literature before discussing the strengths and weaknesses attendant to each. We conclude with several preliminary questions bioethicists can ask themselves to clarify their own purpose for soliciting moral judgments from the public.

Background: The rate of tracheostomy with invasive ventilation (TIV) for patients with Amyotrophic Lateral Sclerosis (ALS) varies widely. Previous studies have shown that doctors' values may affect decision-making. There have been no previous international qualitative comparisons of medical decision-making process for TIV or why practice varies.

Methods: We conducted semi-structured in-depth interviews with 16 doctors actively involved in the management of ALS patients from Japan (n = 7), the UK (n = 5), and the US (n = 4). We used three hypothetical cases to explore decision-making. Conversations were transcribed and thematically analyzed.

Results: Our data reveals similarities but also marked differences in views between the US, the UK and Japan. Almost all participants stated that they ought to respect patient autonomy. However, their approaches varied. British participants wanted to (and felt that they should) respect patient autonomy, but they also believed that TIV was not a realistic option. US participants were likely to prioritize patient autonomy over other ethical principles, and Japanese participants were likely to limit patient autonomy indirectly. The option of TIV appeared to be heavily influenced by the availability of healthcare resources in all three countries. The high cost, limited availability and difficulty of treatment meant that particularly in the UK and the US, it is challenging to receive TIV even if patients wanted this.

Conclusions: Our study illustrates how the emphasis on autonomy varies along with variations in the way care is organized in the setting of highly resource intensive treatment and progressive severe disabling illness. There is a need to review elements of the decision-making process in all three countries. This includes the need for transparent, ideally centralized, decision-making guidelines about the provision of TIV. Although we investigated a rare neuromuscular disease, our results will be relevant to other diseases requiring highly resource-intensive treatment toward the end of life.

Background: This study examines the views of bioethicists in the US and Canada on incorporating social justice into their work and the field more broadly.

Methods: Through an iterative process with leaders in bioethics, we created a survey and distributed it via bioethics listservs and individual emails.

Results: Ultimately, we received responses from 355 bioethicists in the US and Canada. Respondents showed strong support for integrating social justice concerns, with 80% endorsing its inclusion in bioethics and 75% believing it should be a key aim of bioethics scholarship. However, engagement with specific social justice topics varied, and perceptions about institutional support for doing so were mixed. Early-career bioethicists were more likely to support integrating social justice into bioethics.

Conclusion: Our findings highlight the importance of prioritizing social justice within bioethics and underscore the need for institutional support to advance these efforts.

Background: Some have hypothesized that changing attitudes toward medical aid in dying (MAID) contribute to increased suicide rates, perhaps by increasing interest in dying or the perceived acceptability of suicide. This would represent a strong criticism of MAID policies. We sought to evaluate the association between the legalization and implementation of MAID across the U.S. and changing suicide rates.

Methods: We evaluated state-level monthly suicide death rates from 1995 to 2021. Because suicide rates vary by state, we constructed geographically-weighted regression models controlling for annualized state-level sociodemographic factors, such as racial distribution (percent Caucasian), average age, income levels, unemployment rates, rates of spiritual engagement, firearm ownership rates, gender ratios, and education levels. We applied a difference-in-difference analysis within our geographically-weighted models.

Results: 927,929 Suicide deaths were represented in the study. Ten states and the District of Columbia had legalized MAID within the study period. In an univariable analysis, states that legalized MAID differed significantly from non-MAID states with respect to mean monthly suicide rate (non-MAID States: 1.46; MAID states: 1.78; p < 0.0001), as well as several covariates. Monthly suicide death rates were spatially autocorrelated (Moran's I = 0.607, p < 0.0001). In separate geographically-weighted difference-in-difference analyses, changes in suicide rates were not significantly associated with MAID legalization (β = 0.042, p = 0.33) or with later MAID implementation (β = 0.030, p = 0.63), with differences in suicide rates in MAID and non-MAID states being attributable to baseline between-state differences.

Conclusions: Our study failed to find evidence that suicide rates were positively associated with MAID legalization or MAID implementation, when controlling for geographic variation and multiple sociodemographic factors associated with suicide risk. This finding contrasts with other studies that have reported a positive association between suicide rates and MAID, and so calls into question one argument against MAID legalization.

Background: Nonhuman animals are regularly enhanced genomically with CRISPR and other gene editing tools as scientists aim at better models for biomedical research, more tractable agricultural animals, or animals that are otherwise well suited to a defined purpose. This study investigated how genome editors and policymakers perceived ethical or policy benefits and drawbacks for animal enhancement and how perceived benefits and drawbacks are alike, or differ from, those for human genome editing.

Methods: We identified scientists through relevant literature searches as well as conference presentations. Policymakers were identified through rosters of genome editing oversight groups (e.g., International Commission on the Clinical Use of Human Germline Genome Editing, World Health Organization) or efforts aimed at influencing policy (e.g., deliberative democracy groups). Interviews covered participants' views on ethical differences between interventions affecting somatic or germline cells and distinctions between using gene editing for disease treatment, prevention, and enhancement purposes.

Results: Of the 92 participants interviewed, 81 were genome editing scientists, and 33 were policymakers, with 22 interviewees being both scientists and policymakers. Multiple areas were identified in which the ethical implications of genomic enhancements for nonhuman animals differ from those for human animals including with respect to experiential welfare; germline edits; environmental sustainability; and justice.

Conclusions: Overall, respondents viewed that animal enhancement is unburdened by the ethical complexities of human enhancement. These views may be related to participant perceptions of animals' lesser moral status and because germline editing in animals is common practice.

Background: Advances in life-prolonging technologies increasingly create dilemmas for physicians who must decide whether to offer various interventions to patients nearing the end of life. Clinical ethicists are often consulted to support physicians in making these complex decisions and can do so most effectively if they understand physicians' reasons for making recommendations in this context.

Methods: Semi-structured interviews were conducted with surgeons, nephrologists, intensivists, emergency physicians, and oncologists regarding the considerations they have used to make decisions about offering interventions for patients nearing the end of life. Interview transcripts were thematically analyzed.

Results: We identified six types of considerations physicians take into account: (1) patient characteristics at baseline; (2) likelihood to cause harm; (3) likelihood to achieve a goal or perceived benefit; (4) patient and family values and preferences; (5) institutional factors, and (6) professional and personal factors.

Conclusions: While considerations converged into major themes, many participants evaluated and applied these themes differently, opening the door to potential disagreement and variation based on physicians' personal values. Clinical ethicists can help navigate uncertainty and resolve conflicts by helping physicians recognize, evaluate, and communicate their decisional factors to aid informed decision-making.