Beyond the Basics: More Ways that Ethics Consultants Can Help Patients.

The primary task of ethics consultants is to work with patients-and sometimes also their families-to discern and then meet patients' and families' needs and wants to the extent possible. That is primarily a cognitive endeavor. Yet the feelings of patients and ethics consultants may determine what they can work together to accomplish. This article considers their feelings. It looks at sources of distrust and their hoped-for resolution, specific means to enhance patients' decision making in their relationship with ethics consultants, and a new, highly different approach that may enhance their relationships more than most commonly used ways of relating.

"My Hands Are Tied": Abortion Restrictions and Providers' Experiences in Religious and Nonreligious Health Care Systems.

CONTEXT: Abortion is generally prohibited in Catholic hospitals, but less is known about abortion restrictions in other religiously affiliated health care facilities. As religiously affiliated health systems expand in the United States, it is important to understand how religious restrictions affect the practices of providers who treat pregnant patients. METHODS: From September 2016 to May 2018, in-depth interviews were conducted with 31 key informants (clinical providers, ethicists, chaplains and health system administrators) with experience working in secular, Protestant or Catholic health care systems in Illinois. A thematic content approach was used to identify themes related to participants' experiences with abortion policies, the role of ethics committees, the impact on patient care and conflicts with hospital policies. RESULTS: Few limitations on abortion were reported in secular hospitals, while Catholic hospitals prohibited most abortions, and a Protestant-affiliated system banned abortions deemed "elective." Religiously affiliated hospitals allowed abortions in specific cases, if approved through an ethics consultation. Interpretation of system-wide policies varied by hospital, with some indication that institutional discomfort with abortion influenced policy as much as religious teachings did. Providers constrained by religious restrictions referred or transferred patients desiring abortion, including for pregnancy complications, with those in Protestant hospitals having more latitude to directly refer such patients. As a result of religiously influenced policies, patients could encounter delays, financial obstacles, restrictions on treatment and stigmatization. CONCLUSIONS: Patients seeking abortion or presenting with pregnancy complications at Catholic and Protestant hospitals may encounter more delays and fewer treatment options than they would at secular hospitals. More research is needed to better understand the implications for women's access to reproductive health care.

The Role of Self-Care in Clinical Ethics Consultation: Clinical Ethicists' Risk for Burnout, Potential Harms, and What Ethicists Can Do.

Clinical ethics consultants are inevitably called to participate in and bear witness to emotionally challenging cases. With the move toward the professionalization of ethics consultants, the responsibility to respond to and address difficult ethical dilemmas is likely to fall to a small set of people or a single clinical ethicist. Combined with time constraints, the urgent nature of these cases, and the moral distress of clinicians and staff encountered during consultation, like other healthcare professionals such as physicians and nurses, clinical ethics consultants could risk burnout. If it is true that clinical ethicists are at risk for burnout, an important strategy to avoid burnout is to develop sound self-care practices. This article reviews the goals and skills of ethics consultation and the role-specific reasons that clinical ethicists may be at risk for burnout, and argues that clinical ethicists may need to engage in self-care practices. Strategies to address burnout are reviewed and opportunities for future research are identified.

Three Kinds of Humility in Bioethics Certification.

The author's skepticism about certifying bioethicists has a 20-year history. The hazards of certification include doubts about whether an online, multiple-choice exam measures what is important in bioethical deliberation. Other worries include the potential neglect of informal reasoning processes used by patients and families, the creation of a false sense of expertise, and how certification can disenfranchise lay members of ethics committees. This essay does not seek to reverse the growing trend toward certification but urges humility both in the process of certification and in interpreting the results. Humility is here defined through the works of Judith Andre and Jack Coulehan. Three kinds of humility are described as important for bioethics work: epistemic, moral, and ontological. The current qualifications for taking the certification exam are discussed, and suggestions for a better approach are offered.

A Qualitative Study on Experiences and Perspectives of Members of a Dutch Medical Research Ethics Committee.

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee (MREC) regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members.

Lessons learned from implementing a responsive quality assessment of clinical ethics support.

BACKGROUND: Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design has been implemented. CES practitioners themselves reflected upon the quality of ethics support within each other's health care organizations. This study presents a qualitative evaluation of this Responsive Quality Assessment (RQA) project. METHODS: CES practitioners' experiences with and perspectives on the RQA project were collected by means of ten semi-structured interviews. Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of the decisions. RESULTS: The main findings illustrate the relevance of the RQA with regard to fostering the quality of CES by connecting to context specific issues, such as gaining support from upper management and to solidify CES services within health care organizations. Based on their participation in the RQA, CES practitioners perceived a number of changes regarding CES in Dutch health care organizations after the RQA: acknowledgement of the relevance of CES for the quality of care; CES practices being more formalized; inspiration for developing new CES-related activities and more self-reflection on existing CES practices. CONCLUSIONS: The evaluation of the RQA shows that this method facilitates an open learning process by actively involving CES practitioners and their concrete practices. Lessons learned include that "servant leadership" and more intensive guidance of RQA participants may help to further enhance both the critical dimension and the learning process within RQA.

How Should Clinical Ethics Consultants Support Parents' Decision Making?

Clinical ethics consultants (CECs) frequently provide guidance to parents feeling grief and uncertainty. In response to a case in which a CEC works with parents making end-of-life decisions for their child, we argue that CECs should use insights from decision science to consider how emotional distress, information-processing heuristics, and person-environment relationships can influence decision making. Rather than rely on decision aids, CECs should take a personalized, values-based approach to facilitating decision making that acknowledges context and a plurality of possible "right" answers. By using this approach and insights from decision science to support parental decision making, the consultation itself becomes a decision aid, as consultants and parents engage in shared decision making through facilitated discussion and reflection.

The responsibilities of the engaged bioethicist: Scholar, advocate, activist.

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means there cannot be a sharp line between 'academic' or 'objective' bioethics, and advocacy/activism, but a continuum of bioethicists' engagement and an associated continuum of responsibilities.

Do junior academic bioethicists have an obligation to be activists?

Activism and bioethics have enjoyed a somewhat strained relationship. In this paper, I consider activism specifically from the perspective of junior academics. I will argue that although there may be a prima facie duty for bioethicists to be activists, countervailing considerations for junior academics may mean that they, in particular, should refrain from undertaking activist activities. I will argue this on the basis of two key claims. First, I argue that activism may come at a potential cost to the academics who undertake it, and that these costs are potentially of greatest detriment to junior academics undertaking activism. Second, I argue that junior academics are likely to be less effective activists than established academics. Moreover, undertaking activism as a junior academic may prevent one from becoming an effective activist later. Finally, I will discuss the implications of this argument for activist commitments later in one's career.

Bioethicists to the Barricades!

In this article I begin with an anecdote as a way of exploring just exactly what activism entails. Are we talking about the kind of activism every citizen ought to engage in? Should we confine our topic to activism in health care settings? Just what is activism anyway, and how much and what kind ought bioethicists to engage in? Finally, I consider the possibility that it's perfectly permissible for bioethicists not to be activists of any kind.

Bioethics and activism: A natural fit?

Bioethics is a practically oriented discipline that developed to address pressing ethical issues arising from developments in the life sciences. Given this inherent practical bent, some form of advocacy or activism seems inherent to the nature of bioethics. However, there are potential tensions between being a bioethics activist, and academic ideals. In academic bioethics, scholarship involves reflection, rigour and the embrace of complexity and uncertainty. These values of scholarship seem to be in tension with being an activist, which requires pragmatism, simplicity, certainty and, above all, action. In this paper I explore this apparent dichotomy, using the case example of my own involvement in international efforts to end forced organ harvesting from prisoners of conscience in China. I conclude that these tensions can be managed and that academic bioethics requires a willingness to be activist.

The Role of Oncology Nurses as Ethicists: Training, Opportunities, and Implications for Practice.

Ethical challenges are inherent in oncology clinical practice. Ranging from transitions in care to code status and treatment decisions, these ethical challenges can have an acute effect on nurses, with well-established connections to moral distress and other psycho-emotional sequelae. The availability of a nurse ethicist can provide invaluable resources to support nurses in awareness of ethical challenges and support for ethical decision making in practice.

The Appropriate Role of a Clinical Ethics Consultant's Religious Worldview in Consultative Work: Nearly None.

Ethical reasoning is an integral part of the work of a clinical ethics consultant (CEC). Ethical reasoning has a close relationship with an individual's beliefs and values, which, for religious adherents, are likely to be tightly connected with their spiritual perspectives. As a result, for individuals who identify with a religious tradition, the process of thinking through ethical questions is likely to be influenced by their religious worldview. The connection between ethical reasoning and one's spiritual perspective raises questions about the role that CECs' personal religious worldviews should play in their professional lives and their consultative work. This paper offers numerous arguments critiquing the inclusion of a consultant's own spiritual perspective in her work and has identified only limited circumstances under which such inclusion might be permissible. In particular, these arguments lead to the conclusion that a CEC's personal beliefs should never influence her ethical analysis or development of a recommendation. Further, religious appeals should not be used in communication during decision-making conversations other than to describe the patient or surrogate's stated perspective. There may be limited cases in which a CEC may share her spiritual worldview with a patient with the intent of building a collaborative relationship, but such situations should be approached with extreme caution.

Heterogeneous perception of the ethical legitimacy of unbalanced randomization by institutional review board members: a clinical vignette-based survey.

BACKGROUND: Institutional review boards must guarantee the ethical acceptability of a randomized controlled trial before it is conducted. However, some may regard an unbalanced randomization ratio as reflecting an absence of uncertainty between the groups being compared. The objective was to assess institutional review board members' perceptions of whether unbalanced randomization in randomized controlled trials is justified and ethically acceptable. METHODS: Institutional review board members worldwide completed a survey involving clinical vignettes modeling situations classically advocated to explain the use of unbalanced randomization. Institutional review board members were asked whether unbalanced randomization was justified and ethically sound. Answers were collected by using visual analog scales. Data were analyzed by principal component analysis, and a hierarchical ascending classification was created. Verbatim answers were assessed by qualitative content analysis. RESULTS: We analyzed responses from 148 institutional review board members. Three classes of respondents were identified: class 1 (n = 58; 39.2%), mostly skeptics who disagreed with unbalanced randomization, whatever the justification; class 2 (n = 46; 31.1%), believers who considered that unbalanced randomization was acceptable whatever the justification, except cost; and class 3 (n = 44; 29.7%), circumstantial believers for whom unbalanced randomization may be justified for methodological and safety issues but not cost or ethical issues. When institutional review board members were asked whether unbalanced randomization respected the equipoise principle, the mean quotation was low (4.5 ± 3.3 out of 10), especially for class 1 members. CONCLUSIONS: Institutional review board members perceive unbalanced randomization heterogeneously in terms of its justification and its ethical validity.

Setting Expectations for ECMO: Improving Communication Between Clinical Teams and Decision Makers.

Transplant medicine is fraught with clinical-ethical issues. It is not uncommon to have ethicists on transplant teams to help navigate ethically complex cases and ethical questions. Clinical ethicists work in hospitals and/or other healthcare institutions identifying and addressing value-laden conflict and ethical uncertainties. As ethicists, we set out to describe our process and involvement in cases involving extracorporeal membrane oxygenation (ECMO). Our work centers on monitoring and optimizing communication among clinicians, families, and patients, with the goals of (1) aligning patient/family understanding of the nature and purpose of ECMO while encouraging realistic expectations for possible outcomes, and (2) proactively mitigating the moral distress of providers involved in complex ECMO cases. We close with recommendations for how to measure the impact of ethicists' involvement in ECMO cases.

Clinical Ethics Consultation After God: Implications for Advocacy and Neutrality.

In After God: Morality and Bioethics in a Secular Age, H. Tristram Engelhardt, Jr. explores the broad implications for moral reasoning once a culture has lost a God's-eye perspective. In this paper, I focus on the implications of Engelhardt's views for clinical ethics consultation. I begin by examining the question of whether clinical ethics consultants (CECs) should advocate a particular viewpoint and/or process during consultations or adopt a neutral stance. I then examine the implications of Engelhardt's views for this question. Finally, I discuss some of Engelhardt's foundational ontological, metaphysical, meta-ethical, and epistemological commitments and how these commitments connect to his views on clinical ethics consultation.

Why Are There So Few Ethics Consults in Children's Hospitals?

In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children's hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are (1) ethics committee meetings, (2) Nursing Ethics Forum, (3) ethics Brown Bag workshops, (4) PICU ethics rounds, (5) Grand Rounds, (6) NICU Comprehensive Care Rounds, (7) Palliative Care Team (PaCT) case conferences, (8) multidisciplinary consults in Fetal Health Center, and (9) ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of "core competencies" than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple "moral spaces" in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today.

Moral Distress, Ethical Environment, and the Embedded Ethicist.

Interest in understanding the experience of moral distress has steadily gained traction in the 30 years since Jameton first described the phenomenon. This curiosity should be of no surprise, since we now have data documenting the incidence across most caregiver roles and healthcare settings, both in the United States and internationally. The data have also amplified healthcare providers' voices who report that the quality of the ethical environment is pivotal to preventing and containing the adverse effects caused by moral distress. Healthcare providers are asking for a moral space where ethics occurs at the bedside, in real time, applied to real cases. They are asking for ethics expertise to be available as part of the care team during their daily work, when treatment goals must be determined and decisions must be made. They are asking for an embedded ethicist who can help cultivate an ethical environment where formal ethics policy is properly applied to practice. This discussion advocates for an embedded ethics resource model that responds to contemporaneous ethics needs as a strategy to mitigate the effects of moral distress.