Much has happened in the years since I wrote much of the previous Chapters, especially in the world of health care, medicine in particular but even more in medical and bio-medical research. The latter, indeed, is substantially responsible for many of the significant changes in clinical practice, diagnosis and prognosis in recent times. On reflection, it remains somewhat unclear to me that these changes, such as they may be, will also alter the moral themes and basic approach of the preceding (...) Chapters. But since so much has in fact happened, it seemed to me only appropriate to include the following reflections on what had come to be known early in the past two decades as the ‘new genetics’ Is human nature obsolete? Genetics, bioengineering, and the future of the human condition. MIT Press, Boston, pp 177–207, 2004). (shrink)

Clinical ethics consultants (CECs) often face some of the most difficult communication and interpersonal challenges that occur in hospitals, involving stressed stakeholders who express, with strong emotions, their preferences and concerns in situations of personal crisis and loss. In this article we will give examples of how much of the important work that ethics consultants perform in addressing clinical ethics conflicts is incompletely conceived and explained in the American Society of Bioethics and Humanities Core Competencies for Healthcare Ethics Consultation and (...) the clinical ethics literature. The work to which we refer is best conceptualized as a specialized type of interviewing, in which the emotional barriers of patients and their families or surrogates can be identified and addressed in light of relevant ethical obligations and values within the context of ethics facilitation. (shrink)

Clinical ethics consultants provide a range of services in hospital settings and in teaching environments. Training to achieve the skills needed to meet the expectations of employers comes in various forms, ranging from on-the-job training to formal fellowship training programs. We surveyed graduates of clinical ethics fellowships to evaluate their self-reported preparedness for their first job after fellowship training. The results indicated several areas of need, including greater exposure to program-building skills, quality improvement skills, and approaches to working with members (...) of higher administration. These data will be of use to educators as well as to fellows who advocate for elements of training in preparation for their first position. (shrink)

Clinical ethics consultants often confront the most difficult clinical encounters, typically in the setting of chronically critically ill patients and surrogate decision makers. These encounters require not only analytical skills but interpersonal skills as well. In this article, I focus on an interpersonal skill absent from the American Society for Bioethics and the Humanities Task Force’s Core Competencies for Healthcare Ethics Consultation. I introduce the psychoanalytic concept of transference and argue that knowledge and use of transference phenomena are sometimes indispensable (...) for ethics consultation with surrogate decision makers. For solicitation of moral views, disclosure of relevant beliefs and values, and identification of the central ethical question—essential to assessment and analysis—cannot at times begin without recognition and working through of transference. (shrink)

We argue for the addition of trauma informed awareness, training, and skill in clinical ethics consultation by proposing a novel framework for Trauma Informed Ethics Consultation (TIEC). This approach expands on the American Society for Bioethics and Humanities (ASBH) framework for, and key insights from feminist approaches to, ethics consultation, and the literature on trauma informed care (TIC). TIEC keeps ethics consultation in line with the provision of TIC in other clinical settings. Most crucially, TIEC (like TIC) is systematically sensitive (...) to culture, history, difference, power, social exclusion, oppression, and marginalization. By engaging a neonatal intensive care ethics consult example, we define our TIEC approach and illustrate its application. Through TIEC we argue it is the role of ethics consultants to not only hold open moral spaces, but to furnish them in morally habitable ways for all stakeholders involved in the ethics consultation process, including patients, surrogates, and practitioners. (shrink)

Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better. Respondents in 90 family pairs rank-ordered 47 end-of-life statements as life-story narrative measure and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view and predicted pair’s view. They also scored their confidence in (...) surrogate’s decision-making and familiarity with pair’s healthcare-preferences. Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts and between respondent-surrogate and pair-personal Q-sorts before and after controlling for correlation with respondent-personal scores, and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity. Mean age was 35.4 years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 and 75% were ≥ familiar with pair’s healthcare-preferences. Mean projection, simulation, and adjusted-simulation correlations were 0.68, 0.42, and 0.26, respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score. There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts and percent agreement on healthcare-outcomes acceptability. Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background. (shrink)

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. (shrink)

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. (shrink)

Objectives—While clinical practice is complicated by many ethical dilemmas, clinicians do not often request ethics consultations. We therefore investigated what triggers clinicians' requests for ethics consultation. Design—Cross-sectional telephone survey.Setting—Internal medicine practices throughout the United States.Participants—Randomly selected physicians practising in internal medicine, oncology and critical care.Main measurements—Socio-demographic characteristics, training in medicine and ethics, and practice characteristics; types of ethical problems that prompt requests for consultation, and factors triggering consultation requests. Results—One hundred and ninety of 344 responding physicians (55%) reported requesting ethics (...) consultations. Physicians most commonly reported requesting ethics consultations for ethical dilemmas related to end-of-life decision making, patient autonomy issues, and conflict. The most common triggers that led to consultation requests were: 1) wanting help resolving a conflict; 2) wanting assistance interacting with a difficult family, patient, or surrogate; 3) wanting help making a decision or planning care, and 4) emotional triggers. Physicians who were ethnically in the minority, practised in communities under 500,000 population, or who were trained in the US were more likely to request consultations prompted by conflict. Conclusions—Conflicts and other emotionally charged concerns trigger consultation requests more commonly than other cognitively based concerns. Ethicists need to be prepared to mediate conflicts and handle sometimes difficult emotional situations when consulting. The data suggest that ethics consultants might serve clinicians well by consulting on a more proactive basis to avoid conflicts and by educating clinicians to develop mediation skills. (shrink)

While there is no denying the relevance of ethical knowledge and analytical and cognitive skills in ethics consultation, such knowledge and skills can be overemphasized. They can be effectively put into practice only by an ethics consultant, who has a broad range of other skills, including interpretive and communicative capacities as well as the capacity effectively to address the psychosocial needs of patients, family members, and healthcare professionals in the context of an ethics consultation case. In this paper, I discuss (...) how emotion can play an important interpretive role in clinical ethics consultation and why attention to the role of defense mechanisms can be helpful. I concentrate on defense mechanisms, arguing first, that the presence of these mechanisms is understandable given the emotional stresses and communicative occlusions that occur between the families of patients and critical care professionals in the circumstances of critical care; second, that identifying these mechanisms is essential for interpreting and managing how these factors influence the way that the “facts” of the case are understood by family members; and, third, that effectively addressing these mechanisms is an important component for effectively doing ethics consultation. Recognizing defense mechanisms, understanding how and why they operate, and knowing how to deal with these defense mechanisms when they pose problems for communication or decision making are thus essential prerequisites for effective ethics consultation, especially in critical care. (shrink)

BackgroundTo help inform the development of more accessible, acceptable, and effective ethics consultation (EC) training programs, we conducted an EC training needs assessment, exploring ethics practitioners’ opinions on: the relative importance of various EC practitioner competencies; the potential market for EC training (that is, how many individuals would benefit and how much individuals and hospitals would be willing to pay); and the preferred content, format, and characteristics of EC training.MethodsAs part of a multipart study, we surveyed “best informants” who self-identified (...) as the person most actively involved in EC or healthcare ethics in a random sample of 600 U.S. general hospitals, stratified for bed size.ResultsThe competency that was ranked most important for a lead or solo ethics consultant was knowledge of ethics, while common sense was ranked least important. The median estimated number of individuals at each hospital who would benefit from EC training was six at the basic level, three at the advanced level, and two for EC management training. In 19.1 percent of hospitals, respondents thought their hospital would not be willing to pay anything for EC training within the next two years. Respondents thought potential trainees would be likely to participate in EC training on multiple different topics. Opinions varied widely on preferred formats. Most respondents thought it very important to be able to interact with instructors and with other trainees, practice EC skills, receive a certificate for completing EC training, and complete EC training during work hours.ConclusionsThese findings provide U.S. population data that may be useful to healthcare educators and bioethics leaders in their efforts to develop EC training programs and products that match trainees’ preferences and needs. (shrink)

This article utilizes the case of Ms H. to examine the contrasting ways that surrogate decision makers move from simply hearing information about the patient to actually knowing and understanding the patient’s medical condition. The focus of the case is on a family’s request to actually see the patient’s wounds instead of being told about the wounds, and the role of clinical ethicists in facilitating this request. We argue that clinical ethicists have an important role to play in the work (...) of converting information into knowledge and that this can serve as a valuable way forward in the midst of seemingly intractable conflicts in the medical setting. (shrink)