Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second opinion, whereas the second opinion in turn may also affect patients' level of uncertainty. Providers are tasked to clearly discuss all of these uncertainties with patients who may feel overwhelmed by it. The aim of (...) this study was to explore how oncologists communicate about uncertainty during second opinion consultations in medical oncology.Methods: We performed a secondary qualitative analysis of audio-recorded consultations collected in a prospective study among cancer patients who sought a second opinion in medical oncology. We purposively selected 12 audio-recorded second opinion consultations. Any communication about uncertainty by the oncologist was double coded by two researchers and an inductive analytic approach was chosen to allow for novel insights to arise.Results: Seven approaches in which oncologists conveyed or addressed uncertainty were identified: specifying the degree of uncertainty, explaining reasons of uncertainty, providing personalized estimates of uncertainty to patients, downplaying or magnifying uncertainty, reducing or counterbalancing uncertainty, and providing support to facilitate patients in coping with uncertainty. Moreover, oncologists varied in their choice of words/language to convey uncertainty.Discussion: This study identified various approaches of how oncologists communicated uncertain issues during second opinion consultations. These different approaches could affect patients' perception of uncertainty, emotions provoked by it, and possibly even patients' behavior. For example, by minimizing uncertainty, oncologists may consciously steer patients toward specific medical decisions). Future research is needed to examine how these different ways of communicating about uncertainty affect patients. This could also facilitate a discussion about the desirability of certain communication strategies. Eventually, practical and evidence-based guidance needs to be developed for clinicians to optimally inform patients about uncertain issues and support patients in dealing with these. (shrink)

Some health care organizations allow physicians to withhold cardiopulmonary resuscitation from a patient, despite patient or surrogate requests that it be provided, when they believe it will be more harmful than beneficial. Such cases usually involve patients with terminal diagnoses whose medical teams argue that aggressive treatments are medically inappropriate or likely to be harmful. Although there is state-to-state variability and a considerable judicial gray area about the conditions and mechanisms for refusals to perform CPR, medical teams typically follow a (...) set of clearly defined procedures for these decisions. The procedures are based on the principle of nonmaleficence and typically include consultation with hospital ethics committees, reflecting the guidelines of relevant professional associations. Ethical debates about when CPR can and should be limited tend to rely more on discussions of theory, principles, and case studies than systematic empirical study of the situations in which such limitations are applied. Sociologists of bioethics call for empirical study, arguing that what ethicists and health professionals believe they are doing when they draft policies or invoke principles does not always mirror what is happening on the ground. In this article, we begin the task of modeling the empirical analyses sociologists call for, focusing on a cohort at Massachusetts General Hospital. We inductively analyzed ethics committee notes and medical records of nineteen patients whose surrogates did not accept the decision to withhold CPR. (shrink)

One antidote to moral distress is stronger moral agency—that is, an enhanced ability to act to bring about change. The Clinical Ethics Residency for Nurses, an educational program developed and run in two large northeastern academic medical centers with funding from the Health Resources and Services Administration, intended to strengthen nurses’ moral agency. Drawing on Improving Competencies in Clinical Ethics Consultation: An Education Guide, by the American Society for Bioethics and Humanities, and on the goals of the nursing profession, CERN (...) sought to change attitudes, increase knowledge, and develop skills to act on one's knowledge. One of the key insights the faculty members brought to the design of this program is that knowledge of clinical ethics is not enough to develop moral agency. In addition to lecture‐style classes, CERN employed a variety of methods based in adult learning theory, such as active application of ethics knowledge to patient scenarios in classroom discussion, simulation, and the clinical practicum. Overwhelmingly, the feedback from the participants (sixty‐seven over three years of the program) indicated that CERN achieved transformative learning. (shrink)

The remember/know procedure is the most widely used method to investigate recollection and familiarity. It uses trial-by-trial reports to determine how much recollection and familiarity contribute to different kinds of recognition. Few other methods provide information about individual memory judgements and no alternative allows such direct indications of recollection and familiarity influences. Here we review how the RK procedure has been and should be used to help resolve theoretical disagreements about the processing and neural bases of components of recognition memory. (...) Emphasis is placed on procedural weaknesses and a possible confound of recollection and familiarity with recognition memory strength. Recommendations are made about how to minimise these problems including using modified versions of the procedure. The proposals here are important for improving behavioural and lesion research, and vital for brain imaging work. (shrink)

Revolutions in semiconductor device miniaturization, bioelectronics, and applied neural control technologies are enabling scientists to create machine-assisted minds, science fiction's “cyborgs.” In a paper published in 1999, we sought to draw attention to the advances in prosthetic devices, to the myriad of artificial implants, and to the early developments of this technology in cochlear and retinal implants. Our concern, then and now, was to draw attention to the ethical issues arising from these innovations. Since that time, breakthroughs have occurred at (...) a breathtaking pace. Scientists, researchers, and engineers using differing methodologies are pursuing the possibilities of direct interfaces between brains and machines. Technological innovations as such are neither good nor evil; it is the uses devised for them that create moral implications. As there can be ethical problems inherent in the proper human uses of technologies and because brain chips are a very likely future technology, it is prudent to formulate policies and regulations that will mitigate their ill effects before the technologies are widespread. Unlike genetic technologies, which have received widespread scrutiny within the scientific community, national governments, and international forums, brain–machine interfaces have received little social or ethical scrutiny. However, the potential of this technology to change and significantly affect humans is potentially far greater than that of genetic enhancements, because genetic enhancements are inherently limited by biology and the single location of an individual, whereas hybrids of human and machine are not so restricted. Today, intense interest is focused on the development of drugs to enhance memory; yet, these drugs merely promise an improvement of normal memory, not the encyclopedic recall of a computer-enhanced mind combined with the ability to share information at a distance. The potential of brain chips for transforming humanity are astounding. This paper describes advances in hybrid brain–machine interfaces, offers some likely hypotheses concerning future developments, reflects on the implications of combining cloning and transplanted brain chips, and suggests some potential methods of regulating these technologies. (shrink)

Documentary filmmakers have ethical responsibilities to the subjects of their films. Specifically, they have an ethical responsibility to prevent harm to their subjects if they are in a position to do so, even harm not directly related to being in the film. Justification for this comes from documentary's status as a practice of a social institution and can be supported by Utilitarian and Kantian considerations, as well as the Aristotelian discussion of practices. Three films, The Thin Blue Line, Dope Sick (...) Love , and Born Into Brothels , are used as examples for the requirement to prevent harm to subjects. These examples cover several different possibilities of how documentary filmmakers behave concerning the welfare of their subjects and are evaluated in light of ethical considerations offered. (shrink)

In Epistemology of the Closet, Eve Kosofsky Sedgwick explores the connection between the binaries of heterosexuality/homosexuality and the utopian/apocalyptic. In doing so, she exposes the commonplace of a “fantasy trajectory toward a life after the homosexual.”1 In this narrative model, once the queer has completed its function of purging the symbolic of its sins, the character is eliminated from the text as part of the emergence of a postnarrative hetero-normative utopia. In a similar vein, Lee Edelman’s “Against Survival: Queerness in (...) a Time That’s Out of Joint,” an essay on the quintessential revenge tragedy, Hamlet, notes that the revenger’s death ensures a return of society’s idealized vision of the future.2... (shrink)

In online lectures, unlike in face-to-face lectures, teachers lack access to (nonverbal) cues to check if their students are still “with them” and comprehend the lecture. The increasing availability of low-cost eye-trackers provides a promising solution. These devices measure unobtrusively where students look and can visualize these data to teachers. These visualizations might inform teachers about students’ level of “with-me-ness” (i.e., do students look at the information that the teacher is currently talking about) and comprehension of the lecture, provided that (...) (1) gaze measures of “with-me-ness” are related to comprehension, (2) people not trained in eye-tracking can predict students’ comprehension from gaze visualizations, (3) we understand how different visualization techniques impact this prediction. We addressed these issues in two studies. In Study 1, 36 students watched a video lecture while being eye-tracked. The extent to which students looked at relevant information and the extent to which they looked at the same location as the teacher both correlated with students’ comprehension (score on an open question) of the lecture. In Study 2, 50 participants watched visualizations of students’ gaze (from Study 1), using six visualization techniques (dynamic and static versions of scanpaths, heatmaps, and focus maps) and were asked to predict students’ posttest performance and to rate their ease of prediction. We found that people can use gaze visualizations to predict learners’ comprehension above chance level, with minor differences between visualization techniques. Further research should investigate if teachers can act on the information provided by gaze visualizations and thereby improve students’ learning. (shrink)

A current issue in environmental ethics concerns the role of scientists as advocates for environmental policy. Some have argued that scientists should not be permitted to be policy advocates. I will argue that it is morally permissible for scientists to be advocates for environmental policies for four reasons. First, since scientists are also citizens it is improper to deny them the opportunity to advocate for certain policies. Second, scientists possess some expertise in these areas should be sought out to advocate (...) for these positions precisely because they are the ones with the knowledge, understanding and access to objective studies relating to policy issues. Third, I will argue that while objectivity is required for research, advocacy for policy issues does not entail the failure of objectivity. Last, scientists advocating for environmental policy meets the ethical requirements for advocacy generally offered by Robert Audi. These give us good reason to think it is morally permissible for scientists to act as advocates for environmental policy. (shrink)

This qualitative study explored how 10 first-year peer educators understood and utilized their own socilal identities (e.g., their race, gender, sexual orientation, etc.) in their diversity education efforts. All participants saw their identities as having a profound impact on their teaching, although they identified many different, and sometimes contradictory influences. Their identities influenced their credibility as educators, use of emotion, and relationships with dominant and target group member students. Educators sometimes chose to discuss their own experiences with oppression and privilege, (...) and sometimes kept their identities hidden. Participants noted, in conclusion, the importance of considering the influence of their own identity, as awareness influenced how they approached their qork as diversity educators. (shrink)

This qualitative study explored how 10 first-year peer educators understood and utilized their own socilal identities (e.g., their race, gender, sexual orientation, etc.) in their diversity education efforts. All participants saw their identities as having a profound impact on their teaching, although they identified many different, and sometimes contradictory influences. Their identities influenced their credibility as educators, use of emotion, and relationships with dominant and target group member students. Educators sometimes chose to discuss their own experiences with oppression and privilege, (...) and sometimes kept their identities hidden. Participants noted, in conclusion, the importance of considering the influence of their own identity, as awareness influenced how they approached their qork as diversity educators. (shrink)

Numerous articles in the popular press together with an examination of websites associated with the medical, legal, engineering, financial, and other professions leave no doubt that the role of professions has been impacted by the Internet. While offering the promise of the democratization of expertise – expertise made available to the public at convenient times and locations and at an affordable cost – the Internet is also driving a reexamination of the concept of professional identity and related claims of expertise (...) and standards of integrity. This paper begins with a presentation of case studies illustrating the ease by which impostors infiltrate the ranks of professionals. Reports of individuals masquerading as professionals via the Internet often reveal that these imposters cause harm to the unwary victims who rely on assertions of professional expertise. Such reports motivated the authors to examine the origins and evolution of the traditional roles of professions and professionals in today’s society, as well as question how, or whether, the standards for professional practice have been adapted to the challenges posed by technology, i.e., do statements of professional ethics provide a ‘guiding light’ for practitioners and their clients in the cyber age? The authors challenge the professions to consider the notion that technology forces a confrontation between the guild-like aspects of a profession that have served, on the one hand, to protect a profession from encroachment and, on the other hand, have purportedly protected the public. (shrink)

Regarding Equality offers an innovative and controversial analysis of the relationship between equality and pluralism. Tackling an issue central to modern political thought, Freeberg highlights the struggle to characterize citizens as equals while respecting their moral, religious, and cultural diversity. The work ably contrasts and critiques the prevailing models for balancing equality with pluralism from thinkers Amartya Sen, Martha Nussbaum, John Rawls, Amy Gutmann, Dennis Thompson, Michael Oakeshott, and Drucilla Cornell. From these liberal, democratic, and conservative approaches to equality and (...) pluralism, Freeberg builds a theory of responsive regard: reciprocal civility between citizens that forms a chastened conception of what we share as free and equal persons. This work will greatly add to political theorists' and philosophers' arsenals of concepts for egalitarian and democratic theory. (shrink)

There are many strains in Heidegger’s thought to which he often refers, but one that he never mentions, Taoism. Otto Pöggeler has noted that Heidegger’s engagement with Chinese philosophy, and in particular with the Tao Te Ching of Lao-tzu, exerted a decisive effect on the form and direction of his later thinking. With Reinhard May’s careful comparisons of passages from Heidegger’s major texts with translations of the Tao Te Ching and various Zen Buddhist texts, there is now general agreement on (...) Heidegger’s indebtedness to Chinese philosophy. The recurrent themes of his later lectures can all be found in Taoist texts. Often these are points on which he is labeled a mystic or an irrationalist and taken to task by his Western critics. This essay examines some key facets of his thought and compares his position to that of the Tao Te Ching so as to determine the extent to which Heidegger has departed from the Western tradition to become a Taoist. (shrink)

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent (...) questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (shrink)

The idea of a role in nursing that includes expertise in ethics has been around for more than 30 years. Whether or not one subscribes to the idea that nursing ethics is separate and distinct from bioethics, nursing practice has much to contribute to the ethical practice of healthcare, and with the strong grounding in ethics and aspiration for social justice considerations in nursing, there is no wonder that the specific role of the nurse ethicist has emerged. Nurse ethicists, expert (...) in nursing practice and the application of ethical theories and concepts, are well positioned to guide nurses through complex ethical challenges. However, there is limited discussion within the field regarding the specific job responsibilities that the nurse ethicist ought to have. The recent appearance of job postings with the title “nurse ethicist” suggest that some healthcare institutions have identified the value of a nurse in the practice of ethics and are actively recruiting. Discomfort about the possibility of others defining the role of the nurse ethicist inspired this paper (and special issue). If the nurse ethicist is to be seen as an integral part of addressing ethical dilemmas and ethical conflicts that arise in healthcare, then nurse ethicists ought to be at the forefront of defining this role. In this paper, we draw upon our own experiences as nurse ethicists in large academic healthcare systems to describe the essential elements that ought to be addressed in a job description for a nurse ethicist practicing in a clinical setting linked to academic programs. Drawing upon our experience and the literature, we describe how we perceive the nurse ethicist adds value to healthcare organizations and teams of professional ethicists. (shrink)

Previous research has suggested that individuals who identify as being more religious request more aggressive medical treatment at end of life. These requests may generate disagreement over life-sustaining treatment (LST). Outside of anecdotal observation, however, the actual role of religion in conflict over LST has been underexplored. Because ethics committees are often consulted to help mediate these conflicts, the ethics consultation experience provides a unique context in which to investigate this question. The purpose of this paper was to examine the (...) ways religion was present in cases involving conflict around LST. Using medical records from ethics consultation cases for conflict over LST in one large academic medical centre, we found that religion can be central to conflict over LST but was also present in two additional ways through (1) religious coping, including a belief in miracles and support from a higher power, and (2) chaplaincy visits. In-hospital mortality was not different between patients with religiously versus non-religiously centred conflict. In our retrospective cohort study, religion played a variety of roles and did not lead to increased treatment intensity or prolong time to death. Ethics consultants and healthcare professionals involved in these cases should be cognisant of the complex ways that religion can manifest in conflict over LST. (shrink)

In 2015, the major critical care societies issued guidelines outlining a procedural approach to resolving intractable conflict between healthcare professionals and surrogates over life-sustaining treatments (LST). We report our experience with a resolving conflict procedure. This was a retrospective, single-centre cohort study of ethics consultations involving intractable conflict over LST. The resolving conflict process was initiated eleven times for ten patients over 2,015 ethics consultations from 2000 to 2020. In all cases, the ethics committee recommended withdrawal of the contested LST. (...) In seven cases, the patient died or was transferred or a legal injunction was obtained before completion of the process. In the four cases in which LST was withdrawn, the time from ethics consultation to withdrawal of LST was 24.8 ± 12.2 days. Healthcare provider and surrogate were often distressed during the process, sometimes resulting in escalation of conflict and legal action. In some cases, however, surrogates appeared relieved that they did not have to make the final decision regarding LST. Challenges regarding implementation included the time needed for process completion and limited usefulness in emergent situations. Although it is feasible to implement a due process approach to conflict over LST, there are factors that limit the procedure’s usefulness. (shrink)

While a significant literature has appeared discussing theoretical ethical concerns regarding COVID-19, particularly regarding resource prioritization, as well as a number of personal reflections on providing patient care during the early stages of the pandemic, systematic analysis of the actual ethical issues involving patient care during this time is limited. This single-center retrospective cohort mixed methods study of ethics consultations during the first surge of the COVID 19 pandemic in Massachusetts between March 15, 2020 through June 15, 2020 aim to (...) fill this gap. Results indicate that there was no significant difference in the median number of monthly consultation cases during the first COVID-19 surge compared to the same period the year prior and that the characteristics of the ethics consults during the COVID-19 surge and same period the year prior were also similar. Through inductive analysis, we identified four themes related to ethics consults during the first COVID-19 surge including (1) prognostic difficulty for COVID-19 positive patients, (2) challenges related to visitor restrictions, (3) end of life scenarios, and (4) family members who were also positive for COVID-19. Cases were complex and often aligned with multiple themes. These patient case-related sources of ethical issues were managed against the backdrop of intense systemic ethical issues and a near lockdown of daily life. Healthcare ethics consultants can learn from this experience to enhance training to be ready for future disasters. (shrink)

Domain experts regularly teach novice students how to perform a task. This often requires them to adjust their behavior to the less knowledgeable audience and, hence, to behave in a more didactic manner. Eye movement modeling examples (EMMEs) are a contemporary educational tool for displaying experts’ (natural or didactic) problem‐solving behavior as well as their eye movements to learners. While research on expert‐novice communication mainly focused on experts’ changes in explicit, verbal communication behavior, it is as yet unclear whether and (...) how exactly experts adjust their nonverbal behavior. This study first investigated whether and how experts change their eye movements and mouse clicks (that are displayed in EMMEs) when they perform a task naturally versus teach a task didactically. Programming experts and novices initially debugged short computer codes in a natural manner. We first characterized experts’ natural problem‐solving behavior by contrasting it with that of novices. Then, we explored the changes in experts’ behavior when being subsequently instructed to model their task solution didactically. Experts became more similar to novices on measures associated with experts’ automatized processes (i.e., shorter fixation durations, fewer transitions between code and output per click on the run button when behaving didactically). This adaptation might make it easier for novices to follow or imitate the expert behavior. In contrast, experts became less similar to novices for measures associated with more strategic behavior (i.e., code reading linearity, clicks on run button) when behaving didactically. (shrink)

Domain experts regularly teach novice students how to perform a task. This often requires them to adjust their behavior to the less knowledgeable audience and, hence, to behave in a more didactic manner. Eye movement modeling examples (EMMEs) are a contemporary educational tool for displaying experts’ (natural or didactic) problem‐solving behavior as well as their eye movements to learners. While research on expert‐novice communication mainly focused on experts’ changes in explicit, verbal communication behavior, it is as yet unclear whether and (...) how exactly experts adjust their nonverbal behavior. This study first investigated whether and how experts change their eye movements and mouse clicks (that are displayed in EMMEs) when they perform a task naturally versus teach a task didactically. Programming experts and novices initially debugged short computer codes in a natural manner. We first characterized experts’ natural problem‐solving behavior by contrasting it with that of novices. Then, we explored the changes in experts’ behavior when being subsequently instructed to model their task solution didactically. Experts became more similar to novices on measures associated with experts’ automatized processes (i.e., shorter fixation durations, fewer transitions between code and output per click on the run button when behaving didactically). This adaptation might make it easier for novices to follow or imitate the expert behavior. In contrast, experts became less similar to novices for measures associated with more strategic behavior (i.e., code reading linearity, clicks on run button) when behaving didactically. (shrink)

Seminal work by Knobe, Prasada, and Newman (2013) distinguished a set of concepts, which they named “dual‐character concepts.” Unlike traditional concepts, they require two distinct criteria for determining category membership. For example, the prototypical dual‐character concept “artist” has both a concrete dimension of artistic skills, and an abstract dimension of aesthetic sensibility and values. Therefore, someone can be a good artist on the concrete dimension but not truly an artist on the abstract dimension. Does this analysis capture people's understanding of (...) cornerstone social categories, such as gender, around which society and everyday life have traditionally been organized? Gender, too, may be conceived as having not only a concrete dimension but also a distinct dimension of abstract norms and values. As with dual‐character concepts, violations of abstract norms and values may result in someone being judged as not truly a man/woman. Here, we provide the first empirical assessment of applying the dual‐character framework to people's conception of gender. We found that, on some measures that primarily relied on metalinguistic cues, gender concepts did indeed resemble dual‐character concepts. However, on other measures that depicted transgressions of traditional gender norms, neither “man” nor “woman” appeared dual‐character‐like, in that participants did not disqualify people from being truly a man or truly a woman. In a series of follow‐up studies, we examined whether moral norms have come to replace gender role norms for the abstract dimension. Implications for the evolution of concepts and categories are explored. (shrink)

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics committee consultations, twenty-five of (...) which involved unrepresented patients. In thirteen cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST or to change code status to Do Not Resuscitate/Do Not Intubate. Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision. In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers. (shrink)

Systematic study of the intersection of ethics consultation services and solid organ transplants and recipients can identify and illustrate ethical issues that arise in the clinical care of these patients, including challenges beyond resource allocation. This was a single-centre, retrospective cohort study of all adult ethics consultations between January 1, 2007, and December 31, 2017, at a large academic medical centre in the north-eastern United States. Of the 880 ethics consultations, sixty (6.8 per cent ) involved solid organ transplant, thirty-nine (...) (65.0 per cent) for candidates and twenty-one (35.0 per cent ) for recipients. Ethics consultations were requested for 4.3 per cent of heart, 4.9 per cent of lung, 0.3 per cent of liver, and 0.3 per cent of kidney transplant recipients over the study period. Nurses were more likely to request ethics consultations for recipients than physicians (80.0 per cent vs 20.0 per cent, p = 0.006). The most common reason for consultation among transplant candidates was discussion about intensity of treatment or goals of care after the patient was not or was no longer a transplant candidate. The most common reason for ethics consultation among transplant recipients was disagreement between transplant providers and patients/families/non-transplant healthcare professionals over the appropriate intensity of treatment for recipients. Very few consultations involved questions about appropriate resource allocation. Ethics consultants involved in these cases most often navigated communication challenges between transplant and non-transplant healthcare professionals and patients and families. (shrink)

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. (shrink)

Critical care society guidelines recommend that ethics committees mediate intractable conflict over potentially inappropriate treatment, including Do Not Resuscitate status. There are, however, limited data on cases and circumstances in which ethics consultants recommend not offering cardiopulmonary resuscitation despite patient or surrogate requests and whether physicians follow these recommendations. This was a retrospective cohort of all adult patients at a large academic medical center for whom an ethics consult was requested for disagreement over DNR status. Patient demographic predictors of ethics (...) consult outcomes were analyzed. In 42 of the 116 cases, the patient or surrogate agreed to the clinician recommended DNR order following ethics consultation. In 72 of 74 of the remaining cases, ethics consultants recommended not offering CPR. Physicians went on to write a DNR order without patient/surrogate consent in 57 of those cases. There were no significant differences in age, race/ethnicity, country of origin, or functional status between patients where a DNR order was and was not placed without consent. Physicians were more likely to place a DNR order for patients believed to be imminently dying. The median time from DNR order to death was 4 days with a 90-day mortality of 88.2%. In this single-center cohort study, there was no evidence that patient demographic factors affected ethics consultants’ recommendation to withhold CPR despite patient/surrogate requests. Physicians were most likely to place a DNR order without consent for imminently dying patients. (shrink)

Background: The bioethics literature contains speculation but little data about sociodemographic differences between patients for whom ethics committees (EC) are consulted for conflict about life-sustaining treatment (LST) and the broader hospital population that these committees serve. To provide an empirical context for this discussion, we examined differences in five sociodemographic factors between patients for whom an EC was consulted for conflict over LST and the general inpatient population, hypothesizing that nonwhite patients were most likely to be disproportionately represented. Methods: This (...) was a retrospective cohort study comparing self-reported race/ethnicity, household income, insurance status, primary language, and religious affiliation between patients involved in EC consultations for conflict over LST and the general adult inpatient population at a large academic hospital from January 1, 2007, through December 31, 2013. Results: There were 169 EC consultations involving conflict over LST and 243,197 adult inpatient admissions over the study period. On bivariate analysis, patients for whom the EC was consulted for conflict over LST were more likely to be nonwhite, low-income, and to speak a primary language other than English. They were not more likely to be underinsured or to report a religious affiliation. On multivariate analysis, patients for whom the EC was consulted for conflict over LST were more likely to be nonwhite (odds ratio [OR], 2.5; 95% confidence interval [CI], 1.7–3.7; p <.001). They were also more likely to be low income (OR, 1.8; 95% CI, 1.1–3.0; p =.02). They were not more likely to speak a primary language other than English (OR, 1.4; 95% CI, 0.9–2.1; p =.17). None of the assessed variables were associated with conflict over LST requiring additional meetings beyond the first EC consultation. Conclusions: Nonwhite and low-income status patients are disproportionately represented in EC committee consultation for conflict over LST compared to the general inpatient population. (shrink)

Extensive research has documented the harmful effects associated with working for a narcissistic supervisor. However, little effort has been made to investigate ways for victims to alleviate the burdens associated with exposure to such aversive persons. Building on the tenets of conservation of resources theory and the documented efficacy of functional assets to combat job-related stress, we hypothesized that subordinates’ resource management ability would buffer the detrimental impact of narcissistic supervisors on affective, cognitive, and behavioral work outcomes for subordinates. We (...) found support for our hypotheses across three independent samples of US workers. Specifically, higher levels of subordinate resource management ability attenuated the harmful effects of supervisor narcissism on employee-reported emotional exhaustion, job tension, depressed mood, task performance, and citizenship behavior. Conversely, these relationships further deteriorated for subordinates with lower levels of resource management ability. Overall, our research contributes to the literature that, although extensively documenting the harmful ramifications of narcissism in organizations, has neglected to investigate potentially mitigating factors. (shrink)

The lung allocation score system in the United States and several European countries gives more weight to risk of death without transplantation than to survival following transplantation. As a result, centers transplant sicker patients, leading to increased length of initial hospitalization. The care of patients who have accumulated functional deficits or additional organ dysfunction during their prolonged stay can be ethically complex. Disagreement occurs between the transplant team, patients and families, and non-transplant health care professionals over the burdens of ongoing (...) intensive intervention. These cases highlight important ethical issues in organ transplantation, including the nature and requirements of transplant informed consent, the limits of physician prognostication, patient autonomy and decision-making capacity following transplant, obligations to organ donors and to other potential recipients, and the impact of program metrics on individualized recipient care. We outline general ethical principles for the care of lung transplant recipients with prolonged hospitalization and give regulatory, research, and patient-centered recommendations for these cases. (shrink)

We describe the structure, operation, and experience of the Massachusetts General Hospital ethics committee, formally called the Edwin H. Cassem Optimum Care Committee, from January 2007 through December 2013. Founded in 1974 as one of the nation’s first hospital ethics committees, this committee has primarily focused on the optimum use of life-sustaining treatments. We outline specific sociodemographic and clinical characteristics of consult patients during this period, demographic differences between the adult inpatient population and patients for whom the ethics committee was (...) consulted, and salient features of the consults themselves. We include three case studies that illustrate important consult themes during this period. Our findings expand knowledge about the structure and workings of hospital ethics committees and illustrate how one ethics committee has developed and utilized policies on end-of-life care. More generally, we model a sociological approach to the study of clinical ethics consultation that could be utilized to contextualize institutional practices over time. (shrink)

Although many studies have revealed the importance of study skills for students' first?year performance and college retention, the extent of the impact of study skills preparation on students' academic achievement is less clear. This paper explores the impact of pre?university study skills preparation on students' first?year study experiences, academic achievement and persistence. The setting for this study is a large law school in the Netherlands which attracts students from more than 100 schools for secondary education. The results show that the (...) perceived study skills preparation concerning time management and learning skills does have a positive impact on college students' first?year study behaviour and academic achievement. However, the study also shows that the impact of perceived college preparation is far less important for college retention than other factors such as satisfaction about the chosen degree programme and tutorial attendance. (shrink)

A growing body of research has demonstrated significant heterogeneity of hospital ethics committee (HEC) size, membership and training requirements, length of appointment, institutional support, clinical and policy roles, and predictors of self identified success. Because these studies have focused on HECs at a single point in time, however, little is known about how the composition of HECs changes over time and what impact these changes have on committee utilization. The current study presents 20 years of data on the evolution of (...) the Massachusetts General Hospital HEC. Between 1993 and 2012, the average number of committee members per year was 38 ± 3 and the average length of membership was 4.8 ± 0.4 years. During that time, the committee performed 934 consults, averaging 47 ± 3 per year. Attendance rates fell from 61.5 to 23.8 % over the study period and were inversely correlated with the total number of members. Between 1993 and 2012, the committee saw substantial growth in the diversity of the professional backgrounds of its members. Multivariate analysis, however, suggests that substantial changes in committee composition did not impact its utilization and that other factors are more likely to explain fluctuations in consultation volume. (shrink)

The advent of personal genomics companies offering direct translation of scientific data into personal health information, calls into question traditional policies to refuse disclosure of such scientific data to research participants. This seems especially true for population biobanks, as they collect not only genotype information but also associated phenotype information, and thus may be in a unique position to translate their scientific findings into personal health information for their participants. Disclosure of such information seems mandated by the expectations raised by (...) biobanks and their participants' rights to know health information, to know clinical research results, to life and health and particularly their right to benefit. Refusals to disclose such information can be grounded in the lack of analytical validity and/or clinical utility of most findings, the need to avoid the therapeutic misconception, the complexity and costs involved in translation and disclosure and the disproportionate burden resulting from the obligation to respect participants' right not to know before any disclosure can be made. Currently, any demands by participants in population biobanks for full disclosure of all pertinent personal health information potentially resulting from the biobank's scientific findings are unlikely to be granted by a Dutch court under Dutch and international law. As the law stands now, a population biobank is neither a doctor nor a personal genomics company. However, in view of the rapid scientific, medical, technological, commercial and social developments, population biobanks must prepare to take more care of their participants' legitimate interest in receiving as much validated personal health information as reasonably possible, in a timely fashion, by developing appropriate translation and disclosure mechanisms. This paper examines whether population biobank participants have the right, under Dutch civil law and international law, to full disclosure, i.e. to all information generated by the biobank that is pertinent to their present and future health. It pioneers the format of a hypothetical court case to elucidate the legal and policy arguments" for and against full disclosure. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Extensive research has documented the harmful effects associated with working for a narcissistic supervisor. However, little effort has been made to investigate ways for victims to alleviate the burdens associated with exposure to such aversive persons. Building on the tenets of conservation of resources theory and the documented efficacy of functional assets to combat job-related stress, we hypothesized that subordinates’ resource management ability would buffer the detrimental impact of narcissistic supervisors on affective, cognitive, and behavioral work outcomes for subordinates. We (...) found support for our hypotheses across three independent samples of US workers (N = 187; 199; 136). Specifically, higher levels of subordinate resource management ability attenuated the harmful effects of supervisor narcissism on employee-reported emotional exhaustion, job tension, depressed mood, task performance, and citizenship behavior. Conversely, these relationships further deteriorated for subordinates with lower levels of resource management ability. Overall, our research contributes to the literature that, although extensively documenting the harmful ramifications of narcissism in organizations, has neglected to investigate potentially mitigating factors. (shrink)