AJOB Empirical Bioethics最新文献

Introduction: There has been no work that identifies the hidden or implicit normative assumptions on which participants base their views during the COVID-19 pandemic, and their reasoning and how they reach moral or ethical judgements. Our analysis focused on participants' moral values, ethical reasoning and normative positions around the transmission of SARS-CoV-2.Methods: We analyzed data from 177 semi-structured interviews across five European countries (Germany, Ireland, Italy, Switzerland and the United Kingdom) conducted in April 2020.Results: Findings are structured in four themes: ethical contention in the context of normative uncertainty; patterns of ethical deliberation when contemplating restrictions and measures to reduce viral transmission; moral judgements regarding "good" and "bad" people; using existing structures of meaning for moral reasoning and ethical judgement.Discussion: Moral tools are an integral part of people's reaction to and experience of a pandemic. 'Moral preparedness' for the next phases of this pandemic and for future pandemics will require an understanding of the moral values and normative concepts citizens use in their own decision-making. Three important elements of this preparedness are: conceptual clarity over what responsibility or respect mean in practice; better understanding of collective mindsets and how to encourage them; and a situated, rather than universalist, approach to the development of normative standards.

Background: This article presents a set of quality characteristics of clinical ethics support (CES) in the Netherlands.Methods: The quality characteristics were developed with a large group of stakeholders working with CES, participating in the Dutch Network for Clinical Ethics Support (NEON).Results: The quality characteristics concern the following domains: (1) goals of CES, (2) methods of CES, (3) competences of CES practitioners, and (4) implementation of CES. Conclusions: We discuss suggestions for how to use the quality characteristics, discuss some aspects that stand out about these quality characteristics, and reflect on the method and the status of the quality characteristics. The quality characteristics are meant as a heuristic instrument, helping CES practitioners to explore and improve the quality of CES in a health care organization, but at the same time they can be improved based on experiences during their application to CES practices.

BackgroundWhilst informed consent is a key component of considering whether individual genomic research results could or should be fed back to research participants, little is known about the views of African research participants on its role.MethodsWe carried out a qualitative study to explore views of adolescents and parents or caregivers regarding informed consent for feedback of individual results from a genomics research project in Botswana. We conducted 24 deliberative focus group discussions with 93 participants (44 adolescents and 49 parents or caregivers) and 12 in-depth interviews (6 adolescents and 6 parents).ResultsOur findings revealed that most participants would like to be informed about the possibility of discovering individual genetic results during the consent process and that consent be obtained for feedback during the enrollment process. They further expressed that in cases where prior consent to feedback was not obtained, then participants should be re-contacted where life-saving genetic information is discovered. Participants emphasized the need for researchers to ensure that participants' decisions regarding feedback of results are well-informed. Autonomy, transparency, and communication were identified as key values to uphold during the consent process.ConclusionIn conclusion, obtaining participants' consent for feedback of results is important to ensure that their rights and wellbeing are protected in research. This is critical in building trust relationships between participants and researchers.

BackgroundAdherence to widely accepted practice standards is a frequently used measure of healthcare quality. In the U.S., the most widely recognized authoritative source of practice standards for ethics consultation (EC) is the second edition of the American Society for Bioethics and Humanities' Core Competencies for Healthcare Ethics Consultation report.MethodsTo determine the extent to which EC practices in U.S. hospitals adhere to these practice standards, we developed and analyzed 12 evaluative measures from a national survey.ResultsOnly three of the 12 standards achieved over 75% adherence with reported EC practices: allowing anyone involved in a case to request an EC (100%), not requiring an attending physician's permission to conduct an EC (97.6%), and having at least one person on the ethics consultation service (ECS) with advanced level EC proficiency (79.3%).ConclusionsImplications are discussed for achieving consensus on EC standards as they continue to evolve.

BackgroundAn increasing number of studies utilize intracranial electrophysiology in human subjects to advance basic neuroscience knowledge. However, the use of neurosurgical patients as human research subjects raises important ethical considerations, particularly regarding informed consent and undue influence, as well as subjects' motivations for participation. Yet a thorough empirical examination of these issues in a participant population has been lacking. The present study therefore aimed to empirically investigate ethical concerns regarding informed consent and voluntariness in Parkinson's disease patients undergoing deep brain stimulator (DBS) placement who participated in an intraoperative neuroscience study.MethodsTwo semi-structured 30-minute interviews were conducted preoperatively and postoperatively via telephone. Interviews assessed participants' motivations for participation in the parent intraoperative study, recall of information presented during the informed consent process, and participants' postoperative reflections on the research study.ResultsTwenty-two participants (mean age = 60.9) completed preoperative interviews at a mean of 7.8 days following informed consent and a mean of 5.2 days prior to DBS surgery. Twenty participants completed postoperative interviews at a mean of 5 weeks following surgery. All participants cited altruism or advancing medical science as "very important" or "important" in their decision to participate in the study. Only 22.7% (n = 5) correctly recalled one of the two risks of the study. Correct recall of other aspects of the informed consent was poor (36.4% for study purpose; 50.0% for study protocol; 36.4% for study benefits). All correctly understood that the study would not confer a direct therapeutic benefit to them.ConclusionEven though research coordinators were properly trained and the informed consent was administered according to protocol, participants demonstrated poor retention of study information. While intraoperative studies that aim to advance neuroscience knowledge represent a unique opportunity to gain fundamental scientific knowledge, improved standards for the informed consent process can help facilitate their ethical implementation.

BackgroundSince 2014, many companies have followed the lead of Apple and Facebook and now offer financial support to female employees to access egg freezing. Australian companies may soon make similar offers. Employer-sponsored egg freezing (ESEF) has raised concerns and there is academic debate about whether ESEF promotes reproductive autonomy or reinforces the 'career vs. family' dichotomy. Despite the growing availability of ESEF and significant academic debate, little is known about how ESEF is perceived by the public. The aim of this study was to explore women's attitudes toward ESEF.MethodsWomen aged 18-60 years who resided in Victoria, Australia were invited to complete an online, cross-sectional survey investigating views toward egg freezing. Associations between participant demographics and their views about ESEF were assessed using multinominal logistic regression, adjusted for age and free text comments were analyzed using thematic analysis.ResultsThe survey was completed by 656 women, median age 28 years (range: 18-60 years). Opinions on the appropriateness of employers offering ESEF were divided (Appropriate: 278, 42%; Inappropriate: 177, 27%; Unsure: 201, 31%). There was significantly less support for ESEF among older participants and those employed part-time (p < 0.05). While some participants saw the potential for ESEF to increase women's reproductive and career options, others were concerned that ESEF could pressure women to delay childbearing and exacerbate existing inequities in access to ARTs.ConclusionsOur analysis revealed that while some women identified risks with ESEF, for many women ESEF is not viewed as theoretically wrong, but rather it may be acceptable under certain conditions; such as with protections around reproductive freedoms and assurances that ESEF is offered alongside other benefits that promote career building and family. We suggest that there may be a role for the State in ensuring that these conditions are met.

BackgroundWhile previous research has examined various aspects of ethics consultation (EC) in U.S. hospitals, certain EC practices have never been systematically studied.MethodsTo address this gap, we surveyed a random stratified sample of 600 hospitals about aspects of EC that had not been previously explored.ResultsNew findings include: in 26.0% of hospitals, the EC service performs EC for more than one hospital; 72.4% of hospitals performed at least one non-case consultation; in 56% of hospitals, ECs are never requested by patients or families; 59.0% of case consultations involve conflict; the usual practice is to visit the patient in all formal EC cases in 32.5% of hospitals; 56.6% of hospitals do not include a formal meeting in most EC cases; 61.1% of hospitals do not routinely assess ethics consultants' competencies; and 31.6% of hospitals belong to a bioethics network. We estimate the total number of non-case consultations performed in U.S. hospitals to be approximately one half the number of case consultations; we estimate the total number of ECs performed in U.S. hospitals, including both case and non-case consultations, to be just over 100,000 per year.ConclusionsThese findings expand our current understanding of EC in U.S. hospitals, and raise several concerns that suggest a need for further research.

Background: Scarce resource allocation policies vary across the United States. Little is known about regional variation in resource allocation protocols and variation in their application. We sought to evaluate how Covid-19 scarce resource allocation policies vary throughout the Chicago metropolitan area and whether there are differences in policy application within hospitals when prioritizing hypothetical patients who need critical care resources.

Methods: Two cross-sectional surveys were distributed to Chicago metropolitan area hospital representatives and triage officers. Survey responses and categorical variables are described by frequency of occurrence. Intra- and interhospital variation in ranking of hypothetical patients was assessed using Fleiss's Kappa coefficients.

Results: Eight Chicago-area hospitals responded to the survey assessing scarce resource allocation protocols (N = 8/18, response rate 44%). For hospitals willing to describe their ventilator allocation protocol (N = 7), most used the sequential organ failure assessment (SOFA) score (N = 6/7, 86%) and medical comorbidities (N = 4/7, 57%) for initial scoring of patients. A majority gave priority in initial scoring to pre-defined groups (N = 5/7, 71%), all discussed withdrawal of mechanical ventilation for adult patients (N = 7/7, 100%), and a minority had exclusion criteria (N = 3/7, 43%). Forty-nine triage officers from nine hospitals responded to the second survey (N = 9/10 hospitals, response rate 90%). Their rankings of hypothetical patients showed only slight agreement amongst all hospitals (Kappa 0.158) and fair agreement within two hospitals with the most respondents (Kappa 0.21 and 0.25). Almost half used tiebreakers to rank patients (N = 23/49, 47%).

Conclusions: Although most respondents from Chicago-area hospitals described policies for resource allocation during the COVID-19 pandemic, the substance and application of these protocols varied. There was little agreement when prioritizing hypothetical patients to receive scarce resources, even among people from the same hospital. Variations in resource allocation protocols and their application could lead to inequitable distribution of resources, further exacerbating community distrust and disparities in health.

Supplemental data for this article is available online at https://doi.org/10.1080/23294515.2021.1983667.

Background: This study attempts to understand if medical providers beliefs about the moral permissibility of honoring patient-directed refusals of life-sustaining treatment (LST) are tied to their beliefs about the patient's decision-making capacity. The study aims to answer: 1) does concern about a patient's treatment decision-making capacity relate to beliefs about whether it is morally acceptable to honor a refusal of LST, 2) are there differences between provider types in assessments of decision-making capacity and the moral permissibility to refuse LST, and 3) do provider demographics impact beliefs about decision-making capacity and the moral permissibility to refuse LST. Methods: A mixed-methods survey using Likert assessment and vignette-based questions was administered to medical providers within a single health system in the upper Midwest (N = 714) to assess their perspectives on the moral acceptance and decision-making capacity in cases of withholding and withdrawing treatment and suicide. Results: Behavioral health providers report accepting of the moral permissibility of suicide (91.2%) more than either medical providers (77.2%) or surgeons (74.4%) (n = 283). Decision-making capacity was questioned more in the vignettes of the patients refusing life-saving surgery (36%) and voluntarily starvation (40.8%) than in the vignette of the patient requesting to deactivate a pacemaker (13%) (n = 283). Behavioral health providers were more concerned about the capacity to refuse life-saving surgery (55.9%) than medical providers (33.8%) or surgeons (23.1%) (n = 283). Conclusions: Respondents endorse the moral permissibility of persons to withhold or withdraw from treatment regardless of motive. Clinical concerns about a patient's treatment decision-making capacity do not strongly correlate to views about the moral permissibility of honoring refusals of LST. Different provider types appear to have different thresholds for when to question treatment decision-making capacity. Behavioral health providers tend to question treatment decision-making capacity to refuse LST more than non-behavioral health providers.

Background: This study introduces an empirical approach for studying the role of prudence in physician treatment of end-of-life (EOL) decision making.

Methods: A mixed-methods analysis of transcripts from 88 simulated patient encounters in a multicenter study on EOL decision making. Physicians in internal medicine, emergency medicine, and critical care medicine were asked to evaluate a decompensating, end-stage cancer patient. Transcripts of the encounters were coded for actor, action, and content to capture the concept of Aristotelian prudence, and then quantitatively and qualitatively analyzed to identify actions associated with preference-concordant treatment.

Results: Focusing on codes that describe characteristics of physician-patient interaction, the code for physicians restating patient preferences was associated with avoiding intubation. Multiple codes were associated with secondary measures of preference-concordant treatment.

Conclusions: Prudent actions can be identified empirically, and research focused on the virtue of prudence may provide a new avenue for assessment and training in EOL care.