Katie Wasson

Assisted Suicide (AS)/Assisted Dying (AD), where a physician prescribes lethal medication to a terminally ill patient who intends to take it to end his/her life, is a highly controversial matter. Sound knowledge about recent legal changes and related challenges should inform considerations for clinical ethics consultation, education, and policy making. This article describes a wide spectrum of current legal contexts for AS/AD in the United Kingdom, Italy, Austria, the United States (US), Switzerland, and Germany. This selection includes countries covering a wide range from the restrictive to the permissive extreme as well as legal gray zones of AS/AD law and practice. Issues of conscientious objection are addressed, acknowledging that both liberal as well as restrictive practices may trigger moral uncertainty or dilemmas for all those involved. One strategy to improve handling such challenges arising in patient care according to ethical norms and values has been clinical ethics support (CES) in various forms. Like legislation and practice, the involvement of CES in AS/AD differs between countries. The authors describe the role of CES in AS/AD if it exists and explore possible future roles in this changing landscape. Agreement exists that the knowledge and skills of CES are valuable for identifying and analyzing moral issues and informing policy development and education at the individual case, institutional, regional, and national levels. Good practice of handling requests for AS/AD is an example where CES overlaps with organizational clinical ethics, going beyond the acute single case perspective to wider ethical and legal considerations, which can impact patient care and support for health care professionals involved.

The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work.

Background: The field of clinical ethics is examining ways of determining competency. The Assessing Clinical Ethics Skills (ACES) tool offers a new approach that identifies a range of skills necessary in the conduct of clinical ethics consultation and provides a consistent framework for evaluating these skills. Through a training website, users learn to apply the ACES tool to clinical ethics consultants (CECs) in simulated ethics consultation videos. The aim is to recognize competent and incompetent clinical ethics consultation skills by watching and evaluating a videotaped CEC performance. We report how we set a criterion cut score (i.e., minimally acceptable score) for judging the ability of users of the ACES tool to evaluate simulated CEC performances.Methods: A modified Angoff standard-setting procedure was used to establish the cut score for an end-of-life case included on the ACES training website. The standard-setting committee viewed the Futility Case and estimated the probability that a minimally competent CEC would correctly answer each item on the ACES tool. The committee further adjusted these estimates by reviewing data from 31 pilot users of the Futility Case before determining the cut score.Results: Averaging over all 31 items, the proposed proportion correct score for minimal competency was 80%, corresponding to a cut score that is between 24 and 25 points out of 31 possible points. The standard-setting committee subsequently set the minimal competency cut score to 24 points.Conclusions: The cut score for the ACES tool identifies the number of correct responses a user of the ACES tool training website must attain to “pass” and reach minimal competency in recognizing competent and incompetent skills of the CECs in the simulated ethics consultation videos. The application of the cut score to live training of CECs and other areas of practice requires further investigation.

Catholic ethical teaching has increasingly relied on a concept of the common good for making and evaluating social decisions. The authors have argued that the common good is a maximal and ideal concept about which people and communities differ fundamentally. In practice, it does not resolve moral and social disagreements. The concept of the common harm is preferable because it is a minimal standard that can be more clearly identified and agreed for individuals and society, providing a basis for legislative and social action. Bioethics and public health both have strong roots in doing no harm and preventing harm to both individuals and communities in society. The authors argue that the application of the concept of the common harm from these disciplines into wider use in the health professions and public policy would be beneficial. National Catholic Bioethics Quarterly 14.3 : 449–455.

This article offers a critical examination of the notion of the common good in Catholic social ethical teaching, comparing this concept with utilitarianism and examining parallels between them and common critiques of both. Rather than focusing on the common good and trying to reach agreement on its content as a maximum standard for persons and communities in society, we argue that it is preferable to focus on the common harm. The common harm serves as a minimum standard of what causes harm to individuals and communities in society and should be avoided. The common harm provides both a conceptually sound and practically achievable construct for contributing positively to the social ethical discussion in an increasingly secular society. National Catholic Bioethics Quarterly 13.4 : 617–623.

The stories in this volume shed light on the potential of narrative inquiry to fill gaps in knowledge, particularly given the mixed results of quantitative research on patient views of and experiences with genetic and genomic testing. Published studies investigate predictors of testing (particularly risk perceptions and worry); psychological and behavioral responses to testing; and potential impact on the health care system (e.g., when patients bring DTC genetic test results to their primary care provider). Interestingly, these themes did not dominate the narratives published in this issue. Rather, these narratives included consistent themes of expectations and looking for answers; complex emotions; areas of contradiction and conflict; and family impact. More narrative research on patient experiences with genetic testing may fill gaps in knowledge regarding how patients define the benefits of testing, changes in psychological and emotional reactions to test results over time, and the impact of testing on families.

As the field of clinical ethics consultation sets standards and moves forward with the Quality Attestation process, questions should be raised about what ethical issues really do arise in practice. There is limited data on the type and number of ethics consultations conducted across different settings. At Loyola University Medical Center, we conducted a retrospective review of our ethics consultations from 2008 through 2013. One hundred fifty-six cases met the eligibility criteria. We analyzed demographic data on these patients and conducted a content analysis of the ethics consultation write-ups coding both the frequency of ethical issues and most significant, or key, ethical issue per case. Patients for whom ethics consultation was requested were typically male, white, between 50 and 69 years old, of non-Hispanic origin, and of Roman Catholic faith. Nearly half were in the intensive care unit and 44.2 % died in the hospital. The most frequent broad ethical categories were decision-making, goals of care/treatment, and end-of-life. More specifically, capacity, patient’s wishes/autonomy, and surrogate decision maker were the most frequent particular ethical issues. The most common key ethical issues were withdrawing/withholding treatment, patient wishes/autonomy, and capacity. Our findings provide additional data to inform the training of clinical ethics consultants regarding the ethical issues that arise in practice. A wider research agenda should be formed to collect and compare data across institutions to improve education and training in our field.

Reflection in medical education is becoming more widespread. Drawing on our Jesuit Catholic heritage, the Loyola University Chicago Stritch School of Medicine incorporates reflection in its formal curriculum and co–curricular programs. The aim of this type of reflection is to help students in their formation as they learn to step back and analyze their experiences in medical education and their impact on the student. Although reflection is incorporated through all four years of our undergraduate medical curriculum, this essay will focus on three areas where bioethics faculty and medical educators have purposefully integrated reflection in the medical school, specifically within our bioethics education and professional development efforts: 1) in our three–year longitudinal clinical skills course Patient Centered Medicine (PCM), 2) in our co–curricular Bioethics and Professionalism Honors Program, and 3) in our newly created Physician’s Vocation Program (PVP).

Background: Direct–to–consumer genetic testing (DTCGT) offers risk estimates for a variety of complex diseases and conditions, yet little is known about its impact on actual users, including their decisions about sharing the information gleaned from testing. Ethical considerations include the impact of unsolicited genetic information with variable validity and clinical utility on relatives, and the possible burden to the health care system if revealed to physicians. Aims: The qualitative study explored primary care patients’ views, attitudes, and decision making considerations regarding DTCGT. This article focuses on the disclosure decisions participants made regarding participation, testing, and results of DTCGT, a topic which arose as a secondary aim of the study. Methods: Through four longitudinal interviews (pre–test, results, 3 and 12 months post–test) we examined twenty primary care patients’ decisions, expressed intentions, and actions regarding disclosure to immediate and extended family, friends and coworkers, and physicians about participation in and results of DTCGT. Individual interviews were analyzed using qualitative content analysis and a summative approach to describe the global themes. Results: Most participants disclosed to some immediate family; less than half disclosed to extended family; approximately half talked to friends. Most participants stated they would or might disclose to physicians about DTCGT and a few did. Conceptual themes that emerged from the data analysis include ambivalence about disclosure, consistency between intention and actual disclosure behavior and decisions, and conditional information sharing. Conclusions: Participants’ intentional and actual disclosure patterns offer insight into how they view DTCGT, weigh results, and the potential impact of DTCGT.

The American Society for Bioethics and Humanities has created a quality attestation process for clinical ethics consultants; the pilot phase of reviewing portfolios has begun. One aspect of the QA process which is particularly challenging is assessing the interpersonal skills of individual clinical ethics consultants. We propose that using case simulation to evaluate clinical ethics consultants is an approach that can meet this need provided clear standards for assessment are identified. To this end, we developed the Assessing Clinical Ethics Skills tool, which identifies and specifies specific behaviors that a clinical ethics consultant should demonstrate in an ethics case simulation. The aim is for the clinical ethics consultant or student to use a videotaped case simulation, along with the ACES tool scored by a trained rater, to demonstrate their competence as part of their QA portfolio. The development and piloting of the tool is described.