Reimagining Thriving Ethics Programs without Ethics Committees.

With the increasing professionalization of clinical ethics, some hospitals and health systems utilize both ethics committees and professional clinical ethicists to address their ethics needs. Drawing upon historical critiques of ethics committees and their own experiences, the authors argue that, in ethics programs with one or more professional clinical ethicists, ethics committees should be dissolved when they fail to meet minimum standards of effectiveness. The authors outline several criteria for assessing effectiveness, describe the benefits of a model that places primary responsibility for ethics work with professional clinical ethicists-the PCE-primary model, and offer suggestions for alternative ethics program structures that empower healthcare professionals to contribute to ethics work in ways more tailored to their strengths and skills while minimizing the shortcomings of ethics committees.

Becoming Inclusive: Actionable Steps to Diversify the Field of Clinical Ethics.

At the 2022 Clinical Ethics Unconference, the authors perceived a significant lack of racial and ethnic diversity, which was consistent with their experiences in other clinical ethics settings. As a result, they convened a working group to address the pervasive lack of diversity present in the field of clinical ethics and to propose strategies to increase the representation of people from racial and ethnic minority populations. This article identifies the harms associated with the lack of diversity in the healthcare setting and translates these to the field of clinical ethics. The article then proposes a framework that may be used to help diversify the field of clinical ethics. Specifically, the authors identify existing barriers to appropriate diversity, actionable steps to increase diversity, and tools the field can utilize to systematically assess its progress with respect to achieving diversity.

In This Together: Navigating Ethical Challenges Posed by Family Clustering during the Covid-19 Pandemic.

Harrowing stories reported in the media describe Covid-19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision-making by reducing available surrogate decision-makers for incapacitated patients, increases the emotional burdens of surrogate decision-makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, in response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision-making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience.

Comparison Is Not a Zero-Sum Game: Exploring Advanced Measures of Healthcare Ethics Consultation.

BACKGROUND: Studies across the healthcare spectrum consistently show that sharing and comparing data across institutions improves the quality of patient care. Whether comparing data about healthcare ethics consultation (HCEC) would similarly improve quality is unknown due to the lack of research on HCEC data sharing and comparison. Methods: To explore this possibility, we analyzed data from two academic medical centers in the Central-Southern United States that both employ a shared, robust coding system for ethics consultations (N = 703 cases total over 2.5 years) using descriptive and chi-square statistics, correlation coefficients and logistic regressions. Results: Our findings relate to patient age, care location, requestor role, and ethical themes, which together contribute to an improved evidence base for explanatory analyses and quality improvement initiatives. Conclusions: We conclude it is possible to analyze and compare HCEC activities across separate institutions using a standardized approach to data gathering, that this approach is consistent with concurrent narrative case review and assessment, and that cross-institutional comparisons are meaningful. Our results suggest future comparative analyses will require additional standardization of advanced measures for describing and analyzing HCEC activities.

How Much Volume Should Healthcare Ethics Consult Services Have?

BACKGROUND: No standard method exists to assess how many consults a healthcare ethics consultation (HCEC) service should perform. To address this, we developed a method to estimate the volume of HCEC services based on a mixed-methods approach that included a systematic review and survey data on the volume of consult services requested. METHODS: Our investigation included a systematic review of studies that reported the volume of HCEC services that were requested from 2000 to 2017, institutional surveys, and statistical analyses that estimated the volume of HCEC services that were adjusted to the size of the hospitals in the survey and to population acuity. RESULTS: We contacted the authors of 19 studies that met our inclusion criteria; 17 authors responded to the institutional survey and five provided annualized data points. We found that standard methods of reporting the volume of HCEC services led to inaccuracies in estimating the growth of HCEC services over time. To rectify this, we proposed two means to estimate volume based on either the service goals of HCEC services or hospital size and acuity. DISCUSSION: The statistical limitations of our study highlight the need to standardize the sharing and reporting of data in clinical ethics. Future work should further standardize methods of HCEC quality assessment using measures similar to those we describe.

First Do No Harm: Ethical Concerns of Health Researchers That Discourage the Sharing of Results With Research Participants.

Background: Health researchers and health research participants support the sharing of research results; however, results are typically only shared through peer-reviewed publications. Few studies have investigated researchers' ethical concerns related to sharing results with research participants. Methods: An explanatory approach was used to explore the ethical concerns researchers may have with returning aggregate results to research participants. Researchers (N = 414) responded to an online survey of open-ended questions that allowed researchers to provide in-depth explanations regarding their responses to closed-ended questions. Results: Across researchers, the mean percentage of studies for which ethical concerns were reported as a barrier to results sharing was 38.5% (SD= 30.7). Researchers' primary ethical concerns with returning results were articulated as an overarching desire to prevent harm to participants. Three broad ethical concerns emerged, each with underlying subthemes: 1) distress, 2) understanding, and 3) privacy. Conclusions: This is the first study to broadly explore researchers' ethical concerns with sharing aggregate research results with participants and reveals that researchers' ethical concerns are closely tied to the ethical obligation to do no harm. In order to increase results sharing, steps must be taken to help researchers understand how to minimize potential harm when sharing results.

Comprehensive Quality Assessment in Clinical Ethics.

Scholars and professional organizations in bioethics describe various approaches to "quality assessment" in clinical ethics. Although much of this work represents significant contributions to the literature, it is not clear that there is a robust and shared understanding of what constitutes "quality" in clinical ethics, what activities should be measured when tracking clinical ethics work, and what metrics should be used when measuring those activities. Further, even the most robust quality assessment efforts to date are idiosyncratic, in that they represent evaluation of single activities or domains of clinical ethics activities, or a range of activities at a single hospital or healthcare system. Countering this trend, iin this article we propose a framework for moving beyond our current ways of understanding clinical ethics quality, toward comprehensive quality assessment. We first describe a way to conceptualize quality assessment as a process of measuring disparate, isolated work activities; then, we describe quality assessment in terms of tracking interconnected work activities holistically, across different levels of assessment. We conclude by inviting future efforts in quality improvement to adopt a comprehensive approach to quality assessment into their improvement practices, and offer recommendations for how the field might move in this direction.

Ethical Dilemmas Encountered by Health Care Providers Caring for Marshallese Migrants in Northwest Arkansas.

Marshallese migrating to the United States face numerous challenges in accessing health care and managing illness and chronic disease. This study explores health care providers' perceptions of and experiences with ethical dilemmas as they care for Marshallese patients. Utilizing a qualitative research design, we interviewed 21 providers to explore the ethical dilemmas they encountered while treating Marshallese patients. We used the framework of bioethical principlism to categorize and describe the ethical dilemmas reported by those providers. When explicitly asked whether they experienced such situations, approximately half (10/21) affirmed that they had, and analysis of the qualitative data indicated that all interviewees described an ethical dilemma at least once during their interviews. We characterized providers' ethical dilemmas in terms of conflicts that arise when prioritizing different ethical principles in the care of this complex patient population, including the principles of respect for autonomy, nonmaleficence, beneficence, and justice.

How do clinicians prepare family members for the role of surrogate decision-maker?

PURPOSE: Although surrogate decision-making (SDM) is prevalent in intensive care units (ICUs) and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. SUBJECTS AND METHODS: We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates' decisions, including whether clinicians explained one or more of Buchanan and Brock's three standard principles of SDM to family members. RESULTS: Clinicians made at least one statement about how to perform the surrogate role in 24 (34%) conferences (mean of 0.83 statements per conference (1.77; range 0-9)). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM (24% of conferences); counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that (14% of conferences); and counselling surrogates to make decisions based on the family's values (8% of conferences). CONCLUSIONS: Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians' guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates' psychological distress.

Health research participants' preferences for receiving research results.

BACKGROUND: Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants' preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. METHODS: This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study's topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey. RESULTS: Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one's) health, as well as information about studies' purposes and any medical advances based on the results. In general, respondents' most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results' information included in the survey. CONCLUSION: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants' preferences for receiving the results. The study's findings highlight the potential for inconsistency between respondents' expressed preferences to receive specific types of results via specific methods and researchers' unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants' preferences for receiving research results.

A Life Below the Threshold?: Examining Conflict Between Ethical Principles and Parental Values in Neonatal Treatment Decision Making.

Three common ethical principles for establishing the limits of parental authority in pediatric treatment decision-making are the harm principle, the principle of best interest, and the threshold view. This paper considers how these principles apply to a case of a premature neonate with multiple significant co-morbidities whose mother wanted all possible treatments, and whose health care providers wondered whether it would be ethically permissible to allow him to die comfortably despite her wishes. Whether and how these principles help in understanding what was morally right for the child is questioned. The paper concludes that the principles were of some value in understanding the moral geography of the case; however, this case reveals that common bioethical principles for medical decision-making are problematically value-laden because they are inconsistent with the widespread moral value of medical vitalism.

Introducing the Medical Ethics Bowl.

Although ethics is an essential component of undergraduate medical education, research suggests that current medical ethics curricula face considerable challenges in improving students' ethical reasoning. This article discusses these challenges and introduces a promising new mode of graduate and professional ethics instruction for overcoming them. We begin by describing common ethics curricula, focusing in particular on established problems with current approaches. Next, we describe a novel method of ethics education and assessment for medical students that we have devised: the Medical Ethics Bowl (MEB). Finally, we suggest the pedagogical advantages of the MEB when compared to other ethics curricula.

How clinicians discuss critically ill patients' preferences and values with surrogates: an empirical analysis.

OBJECTIVES: Although shared decision making requires clinicians to discuss the patient's values and preferences, little is known about the extent to which this occurs with surrogates in ICUs. We sought to assess whether and how clinicians talk with surrogates about incapacitated patients' preferences and values. DESIGN: Prospective, cross-sectional study. SETTING: Five ICUs of two hospitals. SUBJECTS: Fifty-four physicians and 159 surrogates for 71 patients. INTERVENTIONS: We audio-recorded 71 conferences in which clinicians and surrogates discussed life-sustaining treatment decisions for an incapacitated patient near the end of life. Two coders independently coded each instance in which clinicians or surrogates discussed the patient's previously expressed treatment preferences or values. They subcoded for values that are commonly important to patients near the end of life. They also coded treatment recommendations by clinicians that incorporated the patient's preferences or values. MEASUREMENTS AND MAIN RESULTS: In 30% of conferences, there was no discussion about the patient's previously expressed preferences or values. In 37%, clinicians and surrogates discussed both the patient's treatment preferences and values. In the remaining 33%, clinicians and surrogates discussed either the patient's treatment preferences or values, but not both. In more than 88% of conferences, there was no conversation about the patient's values regarding autonomy and independence, emotional well-being and relationships, physical function, cognitive function, or spirituality. On average, 3.8% (SD, 4.3; range, 0-16%) of words spoken pertained to patient preferences or values. CONCLUSIONS: In roughly a third of ICU family conferences for patients at high risk of death, neither clinicians nor surrogates discussed patients' preferences or values about end-of-life decision making. In less than 12% of conferences did participants address values of high importance to most patients, such as cognitive and physical function. Interventions are needed to ensure patients' values and preferences are elicited and integrated into end-of-life decisions in ICUs.