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.

Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome.

We present a case in which a fetal diagnosis of complex congenital heart disease and trisomy 18 led to a series of decisions for an infant who was critically ill. The parents wanted everything done. The surgeons believed that surgery would be futile. The parents publicized the case on social media, which led to publicity and pressure on the hospital. The case reveals the intersection of parental values, clinical judgments, ethics consultation, insurance company decisions about reimbursement, and social media publicity. Together, these factors complicate the already delicate ethical deliberations and decisions.

A pragmatist approach to clinical ethics support: overcoming the perils of ethical pluralism.

In today's pluralistic society, clinical ethics consultation cannot count on a pre-given set of rules and principles to be applied to a specific situation, because such an approach would deny the existence of different and divergent backgrounds by imposing a dogmatic and transcultural morality. Clinical ethics support (CES) needs to overcome this lack of foundations and conjugate the respect for the difference at stake with the necessity to find shared and workable solutions for ethical issues encountered in clinical practice. We argue that a pragmatist approach to CES, based on the philosophical theories of William James, John Dewey, and Charles Sanders Peirce, can help to achieve the goal of reaching practical solutions for moral problems in the context of today's clinical environment, characterized by ethical pluralism. In this article, we outline a pragmatist theoretical framework for CES. Furthermore, we will show that moral case deliberation, making use of the dilemma method, can be regarded an example of a pragmatist approach to CES.

Untangling Uncertainty: A Study of the Discourses Shaping Clinical Ethics Consultation as a Professional Practice.

This qualitative social scientific interview study delves into the ways in which professional vision is constructed in clinical ethics consultation (CEC). The data consist of 11 semi-structured interviews that were conducted with clinical ethics consultants currently working in hospitals in one major urban area in the U.S. The interviews were analyzed with the qualitative research method of critical discourse analysis, with a focus on identifying the cultural structures of knowledge that shape CEC as a professional practice. The discourses were first identified as belonging to two higher discourse categories, order and agency. Order was divided into three lower categories, emotional, managerial, and rational order, and discourses of agency into the lower categories of exploration, technique, deliberation, and distancing. An additional discourse of neutral interaction was identified as a bridging discourse, activated to level tensions emerging out of conflicting goals and agencies embedded in CEC practice. This analysis brings out as its main observation that clinical ethics consultants draw on and shift between potentially ideologically conflicting social positions that can create built-in tensions within the professional domain. The study calls attention to these tensions and suggests for the professional group to discuss the possibility of defining priorities between different kinds of order, identified in this study, that shape the CEC domain.

Gender and Race in the Timing of Requests for Ethics Consultations: A Single-Center Study.

BACKGROUND: Clinical ethics consultants are expected to "reduce disparities, discrimination, and inequities when providing consultations," but few studies about inequities in ethics consultation exist.1 The objectives of this study were (1) to determine if there were racial or gender differences in the timing of requests for ethics consultations related to limiting treatment, and (2) if such differences were found, to identify factors associated with that difference and the role, if any, of ethics consultants in mitigating them. METHODS: The study was a mixed methods retrospective study of consultation summaries and hospital and ethics center data on 56 age-and gender-matched Caucasian and African American Medicare patients who received ethics consultations related to issues around limiting medical treatment in the period 2011 to 2014. The average age of patients was 70.9. RESULTS: Consultation requests for females were made significantly earlier in their stays in the hospital (6.57 days) than were consultation requests made for males (16.07 days). For African American patients, the differences in admission-to-request intervals for female patients (5.93 days) and male patients (18.64 days) were greater than for Caucasian male and female patients. Differences in the timing of a consultation were not significantly correlated with the presence of an advance directive, the specialty of the attending physician, or the reasons for the consult request. Ethics consultants may have mitigated problems that developed during the lag in request times for African American males by spending more time, on average, on those consultations (316 minutes), especially more time, on average, than on consultations with Caucasian females (195 minutes). Most consultations (40 of 56) did result in movement toward limiting treatment, but no statistically significant differences were found among the groups studied in the movement toward limiting treatment. The average number of days from consult to discharge or death were strongly correlated with the intervals between admission to the hospital and request for an ethics consultation. CONCLUSION: Our findings suggest race and gender disparities in the timing of ethics consultations that consultants may have partially mitigated.

Expertise, Ethics Expertise, and Clinical Ethics Consultation: Achieving Terminological Clarity.

The language of ethics expertise has become particularly important in bioethics in light of efforts to establish the value of the clinical ethics consultation (CEC), to specify who is qualified to function as a clinical ethics consultant, and to characterize how one should evaluate whether or not a person is so qualified. Supporters and skeptics about the possibility of ethics expertise use the language of ethics expertise in ways that reflect competing views about what ethics expertise entails. We argue for clarity in understanding the nature of expertise and ethics expertise. To be an ethics expert, we argue, is to be an expert in knowing what ought to be done. Any attempt to articulate expertise with respect to knowing what ought to be done must include an account of ethics that specifies the nature of moral truth and the means by which we access this truth or a theoretical account of ethics such that expertise in another domain is linked to knowing or being better at judging what ought to be done and the standards by which this "knowing" or "being better at judging" is determined. We conclude with a discussion of the implications of our analysis for the literature on ethics expertise in CEC. We do think that there are clear domains in which a clinical ethics consultant might be expert but we are skeptical about the possibility that this includes ethics expertise. Clinical ethics consultants should not be referred to as ethics experts.

The "Ethics" Expertise in Clinical Ethics Consultation.

The nature, possibility, and implications of ethics expertise (or moral expertise) in general and of bioethics expertise in particular has been the focus of extensive debate for over thirty years. What is ethics expertise and what does it enable experts to do? Knowing what ethics expertise is can help answer another important question: What, if anything, makes a claim of expertise legitimate? In other words, how does someone earn the appellation "ethics expert?" There remains deep disagreement on whether ethics expertise is possible, and if so, what constitutes such expertise and what it entails and legitimates. Discussion of bioethics expertise has become particularly important given the growing presence of bioethicists in the clinical setting as well as efforts to professionalize bioethics through codes of ethics and certification (or quasi-certification) efforts. Unlike in the law or in engineering, where there may be a body of knowledge that professional organizations or others have articulated as important for education and training of experts, ethics expertise admits of no such body of knowledge or required experience. Nor is there an entity seen as having the authority to articulate the necessary scope of knowledge. Questions about whether there is such a body of knowledge for particular areas within bioethics have emerged and played a central role in professionalization efforts in recent years, especially in the area of clinical ethics.

Prenatal Consultation for Extremely Preterm Neonates: Ethical Pitfalls and Proposed Solutions.

In current practice, decisions regarding whether or not to resuscitate infants born at the limits of viability are generally made with expectant parents during a prenatal consultation with a neonatologist. This article reviews the current practice of prenatal consultation and describes three areas in which current practice is ethically problematic: (1) risks to competence, (2) risks to information, and (3) risks to trust. It then reviews solutions that have been suggested in the literature, and the drawbacks to each. Finally, it suggests that the model of prenatal consultation be altered in three ways: (1) that the prenatal consultation be viewed as a process over time, rather than a onetime event; (2) that decision making in the prenatal consultation be framed as a choice between nonresuscitation and a trial of neonatal intensive care, rather than a choice between "doing nothing" and "doing everything"; and (3) that the prenatal consultation process devote serious attention to both the transfer of information and the non-informational needs of families, rather than focus on the transfer of information alone.

How to Retain the Trust of Patients and Families When We Will Not Provide the Treatment They Want.

How might clinicians best try to retain the trust of patients and family members after clinicians oppose giving a treatment? If clinicians can maintain the trust of patients and families in these situations, this may soften what may be the greatest possible loss--the death of a loved one. I discuss what clinicians seeking to retain trust should not do--namely impose their values and reason wrongly--and introduce strategies that clinicians may use to reduce both. I present five principles that clinicians can follow to try to retain trust, with examples that illustrate each. I suggest specific interventions that clinicians can make, especially when they anticipate that a patient and/or family may, in time, want a treatment that is futile.

Moral Reasoning among HEC Members: An Empirical Evaluation of the Relationship of Theory and Practice in Clinical Ethics Consultation.

In light of the ongoing development and implementation of core competencies in bioethics, it is important to proceed with a clear sense of how bioethics knowledge is utilized in the functioning of hospital ethics committees (HECs). Without such an understanding, we risk building a costly edifice on a foundation that is ambiguous at best. This article examines the empirical relationship between traditional paradigms of bioethics theory and actual decision making by HEC members using survey data from HEC members. The assumption underlying the standardization of qualifications and corresponding call for increased education of HEC members is that they will base imminent case decisions on inculcated knowledge. Our data suggest, however, that HEC members first decide intuitively and then look for justification, thereby highlighting the need to re-examine the pedagogical processes of ethics education in the process of standardizing and improving competencies.