The Spring 1999 issue of CambridgeQuarterly adds to the growing body of academic inquiry into the goals of neonatal intensive care practices. Muraskas and colleagues thoughtfully presented the possibility of nontreatment for neonates born at or under 24 weeks gestation. Jain, Thomasma, and Ragas explained that quality of future life must not be ignored in clinical deliberation. And Hefferman and Heilig described once again the dilemmas nurses face when caring for potentially devastated neonates kept alive by technology. These authors take (...) brave steps by publicly questioning the trend of intensive medical support for most every American-born product of conception. But many questions addressing the goals of neonatal intensive care remain, and few authors have actually tried to distill these goals. (shrink)

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care Ethics Consultants, the American Society (...) for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here. (shrink)

Ethics consultation has become an integral part of the fabric of U.S. health care delivery. This article summarizes the second edition of the Core Competencies for Health Care Ethics Consultation report of the American Society for Bioethics and Humanities. The core knowledge and skills competencies identified in the first edition of Core Competencies have been adopted by various ethics consultation services and education programs, providing evidence of their endorsement as health care ethics consultation (HCEC) standards. This revised report was prompted (...) by thinking in the field that has evolved since the original report. Patients, family members, and health care providers who encounter ethical questions or concerns that ethics consultants could help address deserve access to efficient, effective, and accountable HCEC services. All individuals providing such services should be held to the standards of competence and quality described in the revised report. (shrink)

To design effective strategies to improve ethics consultation (EC) practices, it is important to understand the views of ethics practitioners. Previous U.S. studies of ethics practitioners have overrepresented the views of academic bioethicists. To help inform EC improvement efforts, we surveyed a random stratified sample of U.S. hospitals, examining ethics practitioners’ opinions on EC in general, on their own EC service, on strategies to improve EC, and on ASBH practice standards. Respondents across all categories of hospitals had very positive perceptions (...) of their own ethics consultation service (ECS) and few concerns about quality. Our findings suggest that the ethics-related needs of small, rural, non-teaching hospitals may be very different from those of academic medical centers, and therefore, different approaches to addressing ethical issues might be warranted. (shrink)

BackgroundPrenatal and early postnatal choline supplementation reduces cognitive and behavioral deficits in animal models of Fetal Alcohol Spectrum Disorder. In a previously published 9-month clinical trial of choline supplementation in children with FASD, we reported that postnatal choline was associated with improved performance on a hippocampal-dependent recognition memory task. The current paper describes the neurophysiological correlates of that memory performance for trial completers.MethodsChildren with FASD who were enrolled in a clinical trial of choline supplementation were followed for 9 months. Delayed (...) recall on a 9-step elicited imitation task served as the behavioral measure of recognition memory. Neurophysiological correlates of memory were assessed via event-related potentials.ResultsDelayed recall on EI was correlated with two ERP components commonly associated with recognition memory in young children: middle latency negative component and positive slow wave. No significant ERP differences were observed between the choline and placebo groups at the conclusion of the trial.ConclusionAlthough the small sample size limits the ability to draw clear conclusions about the treatment effect of choline on ERP, the results suggest a relationship between memory performance and underlying neurophysiological status in FASD. This trial was registered.1. (shrink)

The COVID-19 pandemic has triggered much-needed reflection on family caregiver burden. This is unsurprising, given U.S. dependence on acute health care delivery and long-standing t...

Seasoned clinical ethics consultants are likely familiar with concerns brought to them about the home environment for a vulnerable patient not meeting criteria for a “safe discharge.” For some pati...

As ambient assisted living technologies continue to evolve, ethics consultants should be prepared to address questions about their proper use. In this issue, we address a scenario in a dementia car...

Responding to the impact of prior trauma on mental and physical health and disease/injury recovery is decades-old. In the 1970s, healthcare providers and researchers expanded our understanding of h...

To the woman, God said, “I will greatly multiply your pain in child bearing; in pain you shall bring forth children, yet your desire shall be for your husband, and he shall rule over you.”Genesis 3:16There is now a well-established body of literature documenting the pervasive inadequate treatment of pain in this country. There have also been allegations, and some data, supporting the notion that women are more likely than men to be undertreated or inappropriately diagnosed and treated for their (...) pain.One particularly troublesome study indicated that women are more likely to be given sedatives for their pain and men to be given pain medication. Speculation as to why this difference might exist has included the following: Women complain more than men; women are not accurate reporters of their pain; men are more stoic so that when they do complain of pain, “it's real”; and women are better able to tolerate pain or have better coping skills than men. (shrink)

As national and state health care policy -making becomes contentious and complex, there is a need for a forum to debate and explore public concerns and values in health care, give voice to local citizens, to facilitate consensus among various stakeholders, and provide feedback and direction to health care institutions and policy makers. This paper explores the role that regional health care ethics committees can play and provides two contrasting examples of Networks involved in facilitation of public input into and (...) the development of health care policies and adoption of state-wide practices. (shrink)

Uncertainty regarding potential disciplinary action may give physicians pause when considering whether to accept a chronic pain patient or how to treat a patient who may require long-term or high doses of opioids. Surveys have shown that physicians fear potential disciplinary acrion for prescribing controlled substances and that physicians will, in some cases, inadequately prescribe opioids due to fear of regulatory scrutiny. Prescribing opioids for long-term pain management, particularly noncancer pain management, has been controversial; and boards have investigated and, in (...) some cases, disciplined physicians for such prescribing. While in virtually all of these cases the disciplinary actions were successfully appealed, news of the success was not often as well-publicized as news of the disciplinary actions, leaving some physicians confused about their potential liability when prescribing opioids for pain. The confusion has perhaps increased as a result of two relatively recent cases, one where a physician was successfully disciplined by a state medical board for undertreatment of his patients’ pain, and another where the physician was successfully sued for inadequate pain treatment. (shrink)

A hub and spoke model offers an effective and efficient approach to providing informed guidance to those who need it. The National Center for Ethics in Health Care (NCEHC) at the Veterans Health Administration, Department of Veterans Affairs, is the largest known hub and spoke healthcare ethics delivery model. In this article, we describe ways NCEHC’s hub and spoke configuration succeeded during the COVID- 19 pandemic, as well as limitations of the model and possible improvements to inform adoption at other (...) healthcare systems. (shrink)

The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for individuals in nursing (...) homes. This is somewhat puzzling given that considerable resources have been devoted to bringing public attention to this problem, we have the knowledge and expertise to provide such care, and we have a government-financed benefit that covers this type of care - the Medicare hospice benefit.While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting. (shrink)

Healthcare ethics consultants in the Veterans Health Administration (VHA) document consults in an enterprise-wide web-based database entitled IEWeb, serving as a system of record for healthcare ethics documentation at 1300 VA facilities. The need arose to evolve the database from an ethics process training resource into a more streamlined documentation repository that captures essential consult elements. A VHA National Center for Ethics in Health Care (NCEHC) Improvement Team convened for three tasks: (1) Specify and prioritize IEWeb changes (occurred via six (...) focus groups composed of “new user” and “super user” cohorts with analysis of existing documentation patterns); (2) Pilot the changes regionally (via regional communication, training, and reviews of pre-post use patterns); and (3) Measure the impact of national change implementation on user perspectives (via pre-and post-change implementation polls). Focus groups identified six implementable priority areas for ethics consult documentation improvement, including the development of a usable consult summary note for ready conversion from IEWeb fields into the electronic health record. Post-IEWeb updates showed an increased number of consults documented, a reduction in “time to consult documentation closure” by a mean of 4.5 days, and a clinically-meaningful improvement in the quality of documentation (78% of ethics questions scored “above-bar” on the validation tool pre- vs. 89% scored “above-bar” post-IEWeb changes, n = 140). According to national survey findings, the number of consultants documenting “all” consults in IEWeb increased, satisfaction increased, and perception of documentation difficulty decreased. IEWeb simplification enabled ethics consultants to re-focus their documentation completion efforts by decreasing perception of documentation burden while improving documentation frequency and quality in a clinically-meaningful way. (shrink)

A 1999–2000 national study of U.S. hospitals raised concerns about ethics consultation (EC) practices and catalyzed improvement efforts. To assess how practices have changed since 2000, we administered a 105-item survey to “best informants” in a stratified random sample of 600 U.S. general hospitals. This primary article details the methods for the entire study, then focuses on the 16 items from the prior study. Compared with 2000, the estimated number of case consultations performed annually rose by 94% to 68,000. The (...) median number of consults per hospital was unchanged at 3, but more than doubled for hospitals with 400+ beds. The level of education of EC practitioners was unchanged, while the percentage of hospitals formally evaluating their ECS decreased from 28.0% to 19.1%. The gap between large, teaching hospitals and small, nonteaching hospitals widened since the prior study. We suggest targeting future improvement efforts to hospitals where needs are not being met by current approaches to EC. (shrink)

When ethics committees are consulted about patients who have or need court-appointed guardians, they lack empirical evidence about several common issues, including the relationship between guardianship and prolonged, potentially medically unnecessary hospitalizations for patients. To provide information about this issue, we conducted quantitative and qualitative analyses using a retrospective cohort from Veterans Healthcare Administration. To examine the relationship between guardianship appointment and hospital length of stay, we first compared 116 persons hospitalized prior to guardianship appointment to a comparison group (n (...) = 348) 3:1 matched for age, diagnosis, date of admission, and comorbidity. We then compared 91 persons hospitalized in the year following guardianship appointment to a second matched comparison group (n = 273). Mean length of stay was 30.75 days (SD = 46.70) amongst those admitted prior to guardianship, which was higher than the comparison group (M = 7.74, SD = 9.71, F = 20.75, p. (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)

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)

The success of fecal microbiota transplantation as a treatment for Clostrioides difficile infection has stirred excitement about the potential for microbiota transplantation as a therapy for a wide range of diseases and conditions. In this article, we discuss vaginal microbiota transplantation as “the next frontier” in microbiota transplantation and identify the medical, regulatory, and ethical challenges related to this nascent field. We further discuss what we anticipate will be the first context for testing VMT in clinical trials, prevention of the (...) recurrence of a condition referred to as bacterial vaginosis. We also compare clinical aspects of VMT with FMT and comment on how VMT may be similar to or different from FMT in ways that may affect research design and regulatory decisions. (shrink)

Responding to a major pandemic and planning for allocation of scarce resources under crisis standards of care requires coordination and cooperation across federal, state and local governments in tandem with the larger societal infrastructure. Maryland remains one of the few states with no state-endorsed ASR plan, despite having a plan published in 2017 that was informed by public forums across the state. In this article, we review strengths and weaknesses of Maryland’s response to COVID-19 and the role of the Maryland (...) Healthcare Ethics Committee Network in bridging gaps in the state’s response to prepare health care facilities for potential implementation of ASR plans. Identified “lessons learned” include: Deliberative Democracy Provided a Strong Foundation for Maryland’s ASR Framework; Community Consensus is Informative, Not Normative; Hearing Community Voices Has Inherent Value; Lack of Transparency & Political Leadership Gaps Generate a Fragmented Response; Pandemic Politics Requires Diplomacy & Persistence; Strong Leadership is Needed to Avoid Implementing ASR … And to Plan for ASR; An Effective Pandemic Response Requires Coordination and Information-Sharing Beyond the Acute Care Hospital; and The Ability to Correct Course is Crucial: Reconsidering No-visitor Policies. (shrink)

Medical researchers must continue to develop and test non-blood oxygen-transport products. Resources provided by the Jehovah's Witness Hospital Assistance Line must be consulted. Sickle cell researchers must continue to test non-blood treatment. Information about non-blood treatments must be disbursed. Ways to enhance parental comport as the laws further and further support children's best interest must be provided. Information regarding cultural diversity must be disseminated. Hospitals and healthcare agencies that have not done so must institute the use of ethics consulting or (...) ethics committees. Nurse ethicists must continue development of the role of educating staff; mediation, arbitration and negotiation; problem solving; obtaining legal opinion; providing patient, family, or staff advocacy; and helping to reduce suffering on the part of the providers. Difficult ethical decisions should continue to be debated.Were the staff at X Med Center correct in overriding parental wishes and breaking tenets of their faith? In the doctor's, nurse's lawyer's, and judge's view they were. The child, now eight years old, is alive and well. The stroke resolved, and imminent death averted. The parents' and child's views are not presently available. Whether the family is suffering from the child's loss of his relationship with God, or are secretly relieved in their hearts that they are not, like Rita Swan, mourning their dead son, is unknown. What is known, is that this was a difficult case for all involved, and that such cases will continue to present themselves in the future. (shrink)

Fear of burdening or harming childbearing, migrant women, particularly refugees or others who have experienced war, torture, abuse, or rape, can result in their exclusion from research. This exclusion prohibits health issues and related solutions to be identified for this population. For this reason, while it may be challenging to include these women in studies, it is ethically problematic not to do so. Using ethical guidelines for research involving humans as a framework, and drawing on our research experiences. This discussion (...) article proposes a number of strategies to improve the conditions for childbearing migrant women to participate in health research. What emerged as key for studying this diverse population and ensuring an ethically responsible approach are the use of methods that are adapted to the circumstances of childbearing migrant women and the involvement and support from “migrant-friendly” organizations. Ensuring migrant women are involved in the research process and knowledge produced is also critical. The more researchers working in this field communicate their experiences, the more will be learnt about how best to approach research with migrants. More migration and health research will enable a greater contribution to the knowledge base upon which the needs of this population can be met and their strengths maximized. (shrink)

Tertiary healthcare ethics (HCE) consultation occurs when an HCE consultant at a healthcare facility requests guidance from one or more senior HCE consultants who are not members of that facility’s HCE consultation service. Tertiary HCE consultants provide advanced HCE guidance and/or mentoring to facility (secondary) HCE consultants, mirroring healthcare consultation in clinical practice. In this article, we describe advantages and challenges of providing tertiary HCE consultation through a hub-and-spoke model administered by a national integrated HCE service.

In this paper, we explore challenges in conveying the culturally constructed meanings of local Indigenous musics and the worldviews they manifest to students in K-12 school music classes, when foundational aspects of the English language, historical and current discourse, and English language habits function to thwart the transmission of those meanings. We recount how, in settler colonial societies in North America, speakers of the dominant English language have historically misrepresented, discredited, and obscured cultural meanings that inhere in local Indigenous musics. (...) First, we examine three ways in which the use of English has distorted the cultural meanings of those musics. Next, we explain how historical discourses in English have intentionally undervalued or discredited the values intrinsic to those musics, also describing how some current music education discourse in English might work against the embedding of Indigenous meanings in school music education settings. We then consider additional factors distinguishing Indigenous languages from European languages (especially English) to show how a people’s “language habits” influence their perception of and thus their relationship with their natural environment. We conclude by considering the role of music education in revitalizing local Indigenous languages and musics and advancing the cultural values of their originating communities. (shrink)

The Ontology for Biomedical Investigations (OBI) is an ontology that provides terms with precisely defined meanings to describe all aspects of how investigations in the biological and medical domains are conducted. OBI re-uses ontologies that provide a representation of biomedical knowledge from the Open Biological and Biomedical Ontologies (OBO) project and adds the ability to describe how this knowledge was derived. We here describe the state of OBI and several applications that are using it, such as adding semantic expressivity to (...) existing databases, building data entry forms, and enabling interoperability between knowledge resources. OBI covers all phases of the investigation process, such as planning, execution and reporting. It represents information and material entities that participate in these processes, as well as roles and functions. Prior to OBI, it was not possible to use a single internally consistent resource that could be applied to multiple types of experiments for these applications. OBI has made this possible by creating terms for entities involved in biological and medical investigations and by importing parts of other biomedical ontologies such as GO, Chemical Entities of Biological Interest (ChEBI) and Phenotype Attribute and Trait Ontology (PATO) without altering their meaning. OBI is being used in a wide range of projects covering genomics, multi-omics, immunology, and catalogs of services. OBI has also spawned other ontologies (Information Artifact Ontology) and methods for importing parts of ontologies (Minimum information to reference an external ontology term (MIREOT)). The OBI project is an open cross-disciplinary collaborative effort, encompassing multiple research communities from around the globe. To date, OBI has created 2366 classes and 40 relations along with textual and formal definitions. The OBI Consortium maintains a web resource providing details on the people, policies, and issues being addressed in association with OBI. (shrink)

As one of the most important ethicists to emerge since the Second World War, Alan Gewirth continues to influence philosophical debates concerning morality. In this ground-breaking book, Gewirth's neo-Kantianism, and the communitarian problems discussed, form a dialogue on the foundation of moral theory. Themes of agent-centered constraints, the formal structure of theories, and the relationship between freedom and duty are examined along with such new perspectives as feminism, the Stoics, and Sartre. Gewirth offers a picture of the philosopher's theory and (...) its applications, providing a richer, more complete critical assessement than any which has occurred to date. (shrink)

Recent findings indicate that frontal brain asymmetry may be a marker of for depression. However, the psychological predispositions that account linkage between frontal brain asymmetry and depression are unclear. approach-withdrawal hypothesis is the primary framework that has been to account for the linkages between frontal brain asymmetry and or emotional disorders. We review evidence consistent with this and suggest several directions for its extension. One such direction is to constrain the approach-withdrawal hypothesis by linking frontal asymmetry to the known functions (...) of the prefrontal cortex. On this we propose that frontal brain asymmetry may be preferentially linked processes that promote the temporal continuity and shifting of or emotional priorities and the suppression of interference by sources of motivation or emotion. We review evidence from and neurobiological studies of depression that is broadly consistent with these predictions. We emphasise the need for future studies testing our hypotheses. (shrink)

It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we propose the Ethical Data (...) Practices framework. The framework outlines six principles relevant to the collection and use of personal data—minimizing harm, fairly distributing benefits and burdens, respecting autonomy, transparency, accountability, and inclusion—and translates these principles into action-guiding practical imperatives for companies that process personal data. In addition to informing policy, the practical imperatives can be voluntarily adopted by companies to promote ethical data practices. (shrink)

Artificial intelligence (AI) has garnered tremendous attention in health care, and many hope that AI can enhance our health system’s ability to care for people with chronic and degenerative conditions, including Parkinson’s Disease (PD). This paper reports the themes and lessons derived from a qualitative study with people living with PD, family caregivers, and health care providers regarding the ethical dimensions of using AI to monitor, assess, and predict PD symptoms and progression. Thematic analysis identified ethical concerns at four intersecting (...) levels: personal, interpersonal, professional/institutional, and societal levels. Reflecting on potential benefits of predictive algorithms that can continuously collect and process longitudinal data, participants expressed a desire for more timely, ongoing, and accurate information that could enhance management of day-to-day fluctuations and facilitate clinical and personal care as their disease progresses. Nonetheless, they voiced concerns about intersecting ethical questions around evolving illness identities, familial and professional care relationships, privacy, and data ownership/governance. The multi-layer analysis provides a helpful way to understand the ethics of using AI in monitoring and managing PD and other chronic/degenerative conditions. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)