Hidden Fault Lines in the Bedrock: A Critical Examination of Surrogate Decision-Making Standards in Ethics Consultation.

AbstractClinical ethicists are routinely consulted in cases that involve conflicts and uncertainties related to surrogate decision-making for incapacitated patients. To navigate these cases, we invoke a canonical ethical-legal hierarchy of decision-making standards: the patient's known wishes, substituted judgment, and best interest. Despite the routine application of this hierarchy, however, critical scholarly literature alleges that these standards fail to capture patients' preferences and surrogates' behaviors. Moreover, the extent to which these critiques are incorporated into consultant practices is unclear. In this article I thus explore whether, and how, existing critiques of the hierarchy affect the application of these standards during ethics consults. After discussing four critiques of the hierarchy, I examine how two prominent published ethics consultation methodologies-bioethics mediation and CASES-incorporate these critiques differently. I then argue that while both methodologies explicitly endorse the same hierarchy, the varying degrees to which these four criticisms are incorporated into the prescribed consultation process could produce different applications of the same standard. I demonstrate with a case study how an ethics consultant following either methodology might produce two substantively different recommendations despite using the same substituted judgment standard. I conclude that while this heterogeneity of application should not dismantle the hierarchy's status as field-wide canon, it complicates projects of professional ethics consultation consensus building.

Clinical ethics consultation services: public-facing information on NCI-designated cancer center websites.

Clinical ethics consultation services (CECS) can be particularly complex in oncology, and widespread misconceptions exist about their nature. As a result, visibility and accessibility of information regarding CECS is critical. We investigated the availability and content of information regarding CECS on websites of NCI-designated comprehensive cancer centers and cancer centers (CCs). Each website was reviewed for information on CECS and reviewed for benchmarks partially derived from the American Society of Bioethics and Humanities recommendations for CECS. Our analysis revealed that of 70 NCI-designated center websites, 38 had information on CECS, and 17 were found directly on these sites. When CECS information was available, most websites provided a mission statement (71%) and an explanation of what constitutes an ethics consult (74%). Few provided a description of the consult process (45%) or service membership (39%). Our findings reveal a significant gap in CECS visibility on the websites of NCI-designated CCs.

Clinical and Organizational Ethics: Challenges to Methodology and Practice.

The day-to-day work of clinical ethics consultants and healthcare ethics committees can easily become overly routine. Too much routine, however, comes with a risk that morally important practices will be reduced to mere bureaucratic formalities, while practitioners become desensitized to ethically significant distinctions between cases. Clinical ethics consultation and organizational ethics must be set within the broader social and cultural context of the healthcare environment. This practice requires looking beyond mere legal compliance and the routinely false assumption that there are unambiguous ethical norms that easily govern clinical ethics and hospital policy formation. Together the essays in this issue of HEC Forum challenge readers to rethink taken-for-granted assumptions regarding patient care, physician obligation, clinical ethics consultation, and organizational ethics.

Answering the Call for Standardized Reporting of Clinical Ethics Consultation Data.

Benchmarks against which healthcare ethics consultation (HCEC) services can assess their performance are needed. As first-generation benchmarks continue to be developed, it is the obligation of the field to continually evaluate how these measures reflect the performance of any single HCEC service. This will be possible only with widespread reporting of standardized data points. In their article in this issue of The Journal of Clinical Ethics, Glover and colleagues provide a valuable preliminary approach for assessing appropriate consult volumes for a HCEC service. The limitations of their study read as a call to action for the field of clinical ethics to expand and standardize data reporting so that more robust metrics can be developed. In response to this call by Glover and colleagues, the Cleveland Clinic HCEC service provides consult data from 2015 through 2019 for one of its medical centers, and offers an additional volume-based metric, consult-to-ICU-to-bed ratio (CiBR), that may add nuance to any normative assessment of HCEC service consult volume. Given that volume-based metrics are the native language of the clinical environment, efforts to improve such metrics in the field through transparency and standardization are warranted. However, the expositive power of volume- based metrics is limited; additional domains related to quality and outcomes are needed.

Dealing with Moral Challenges in Treatment of Transgender Children and Adolescents: Evaluating the Role of Moral Case Deliberation.

Treatment teams providing affirmative medical transgender care to young people frequently face moral challenges arising from the care they provide. An adolescent's capacity to consent, for example, could raise several issues and challenges. To deal with these challenges more effectively, several Dutch treatment teams started using a relatively well-established form of clinical ethics support (CES) called Moral Case Deliberation (MCD). MCD is a facilitator-led, collective moral inquiry based on a real case. This study's purpose is to describe the teams' perceived value and effectiveness of MCD. We conducted a mixed methods evaluation study using MCD session reports, individual interviews, focus groups, and MCD evaluation questionnaires. Our results show that Dutch transgender care providers rated MCD as highly valuable in situations where participants were confronted with moral challenges. The health care providers reported that MCD increased mutual understanding and open communication among team members and strengthened their ability to make decisions and take action when managing ethically difficult circumstances. However, the health care providers also expressed criticisms of MCD: some felt that the amount of time spent discussing individual cases was excessive, that MCD should lead to more practical and concrete results, and that MCD needed better integration and follow-up in the regular work process. We recommend future research on three matters: studying how MCD contributes to the quality of care, involvement of transgender people themselves in MCD, and integration of CES into daily work processes.

The role of online ethics consultation on mental health.

BACKGROUND: Nurses experience moral distress when they cannot do what they believe is right or when they must do what they believe is wrong. Given the limited mechanisms for managing ethical issues for nurses in Japan, an Online Ethics Consultation on mental health (OEC) was established open to anyone seeking anonymous consultation on mental health practice. RESEARCH OBJECTIVE: To report the establishment of the Online Ethics Consultation and describe and evaluate its effectiveness. ETHICAL CONSIDERATIONS: The research was conducted in accordance with the Declaration of Helsinki. RESEARCH DESIGN: This evaluation describes the outcomes of 5 years of operation of the Online Ethics Consultation on mental health in Japan. PARTICIPANTS: The Online Ethics Consultation received 12 emails requesting consultation. Consultees included mental health nurses, psychiatrists, and service users. FINDINGS: The most common questions directed to the service were about seclusion and physical restraint. Response time from receipt of email to sending a reply was between 1 and 14 days. Despite the disappointing number of consultations, feedback has been positive. DISCUSSION: The Online Ethics Consultation was established to assist morally sensitive nurses in resolving their ethical problems through provision of unbiased and encouraging advice. Mental health care in Japan has been less than ideal: long-term social hospitalization, seclusion, and restraint are common practices that often lead to moral distress in nurses and the questions received reflected this. The head of the Online Ethics Consultation sent a supportive, facilitative response summarizing the opinions of several consultants. CONCLUSION: This study provides key information for the establishment of an online ethics resource the adoption of which has the potential to improve the experience of nurses, allied health and clients of mental health services. This paper has implications for services concerned with improving patient care, managing nurses' moral distress, building ethics into decision-making.

Policies for Mandatory Ethics Consultations at U.S. Academic Teaching Hospitals: A Multisite Survey Study.

OBJECTIVES: To determine the number of top-ranked U.S. academic institutions that require ethics consultation for specific adult clinical circumstances (e.g., family requests for potentially inappropriate treatment) and to detail those circumstances and the specific clinical scenarios for which consultations are mandated. DESIGN: Cross-sectional survey study, conducted online or over the phone between July 2016 and October 2017. SETTING: We identified the top 50 research medical schools through the 2016 U.S. News and World Report rankings. The primary teaching hospital for each medical school was included. SUBJECTS: The chair/director of each hospital's adult clinical ethics committee, or a suitable alternate representative familiar with ethics consultation services, was identified for study recruitment. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A representative from the adult ethics consultation service at each of the 50 target hospitals was identified. Thirty-six of 50 sites (72%) consented to participate in the study, and 18 (50%) reported having at least one current mandatory consultation policy. Of the 17 sites that completed the survey and listed their triggers for mandatory ethics consultations, 20 trigger scenarios were provided, with three sites listing two distinct clinical situations. The majority of these triggers addressed family requests for potentially inappropriate treatment (9/20, 45%) or medical decision-making for unrepresented patients lacking decision-making capacity (7/20, 35%). Other triggers included organ donation after circulatory death, initiation of extracorporeal membrane oxygenation, denial of valve replacement in patients with subacute bacterial endocarditis, and posthumous donation of sperm. Twelve (67%) of the 18 sites with mandatory policies reported that their protocol(s) was formally documented in writing. CONCLUSIONS: Among top-ranked academic medical centers, the existence and content of official policies regarding situations that mandate ethics consultations are variable. This finding suggests that, despite recent critical care consensus guidelines recommending institutional review as standard practice in particular scenarios, formal adoption of such policies has yet to become widespread and uniform.

Development and Retrospective Review of a Pediatric Ethics Consultation Service at a Large Academic Center.

The primary objective was to review pediatric ethics consultations (PECs) at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient setting, with the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach.

What the HEC-C? An Analysis of the Healthcare Ethics Consultant-Certified Program: One Year in.

Efforts to professionalize the field of bioethics have led to the development of the Healthcare Ethics Consultant-Certified (HEC-C) Program intended to credential practicing healthcare ethics consultants (HCECs). Our team of professional ethicists participated in the inaugural process to support the professionalization efforts and inform our views on the value of this credential from the perspective of ethics consultants. In this paper, we explore the history that has led to this certification process, and evaluate the ability of the HEC-C Program to meet the goals it has set forth for HCECs. We describe the benefits and weaknesses of the program and offer constructive feedback on how the process might be strengthened, as well as share our team's experience in preparing for the exam.

Outcomes of clinical ethics support near the end of life: A systematic review.

BACKGROUND: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate clinical ethics support services near the end of life. METHODS: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241. ETHICAL CONSIDERATIONS: Ethical approval is not needed as it is a systematic review of published literature. RESULTS: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results. CONCLUSION: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services.

How Should Ethics Consultants Weigh the Law (and other Authoritative Directives)?

In the continuing debate about the role of the Clinical Ethics Consultant in performing clinical ethics consultations, it is often assumed that consultants should operate within ethical and legal standards. Recent scholarship has focused primarily on clarifying the consultant's role with respect to the ethical standards that serve as parameters of consulting. In the following, however, I wish to address the question of how the ethics consultant should weigh legal standards and, more broadly, how consultants might weigh authoritative directives, whether legal, institutional, or professional, against other normative considerations. I argue that consultants should reject the view that authoritative directives carry exclusionary reason for actions and, further, ethicists should interpret directives as lacking any moral weight qua authoritative directive. I then identify both implications and limitations of this view with respect to the evolving role of the ethics consultant in an institutional setting, and in doing so propose the kinds of considerations the ethicist should weigh when presented with an authoritative directive.

On Best Interests: A Case for Clinical Ethics Consultation.

Surrogate health care decision making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, health care providers, and other members of the health care team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants is sought to assist with complex health care decision making. Clinical ethics consultation is designed to provide a more objective "outside" opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr K., a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and who lacks decisional capacity in regard to his own treatment decision making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.

Taxonomizing Views of Clinical Ethics Expertise.

Our aim in this article is to bring some clarity to the clinical ethics expertise debate by critiquing and replacing the taxonomy offered by the Core Competencies report. The orienting question for our taxonomy is: Can clinical ethicists offer justified, normative recommendations for active patient cases? Views that answer "no" are characterized as a "negative" view of clinical ethics expertise and are further differentiated based on (a) why they think ethicists cannot give justified normative recommendations and (b) what they think ethicists can offer, if they cannot offer recommendations. Views that answer "yes" to the orienting question are characterized as a "positive" view of clinical ethics expertise. Positive views are distinguished according to four additional questions. First (P1), how are those recommendations generated? Second (P2), what is the nature of the recommendations? Third (P3), we ask, how are the recommendations justified? And finally (P4), how are the recommendations communicated?

Developing, Administering, and Scoring the Healthcare Ethics Consultant Certification Examination.

In November 2018, the practice of health care ethics consultation crossed a major threshold when 138 candidates took the inaugural Healthcare Ethics Consultant Certification Examination. This accomplishment, long in the making, has had and continues to have both advocates and critics. The Healthcare Ethics Consultant Certification Commission, a functionally autonomous body created and funded by the American Society for Bioethics and Humanities, was charged with overseeing creation of the certification process, developing the exam, and formulating certification standards and policies to assess candidates' qualifications. In this essay, as members of the commission, we describe the process of developing, administering, and scoring the certification examination as well as the historical context and the outlook for certification. By detailing the decisions and actions of the commission, we aim to provide a transparent account of the commission's efforts to develop a psychometrically sound, reliable, and secure examination through a deliberative, fair, and data-driven process.

The Place for Religious Content in Clinical Ethics Consultations: A Reply to Janet Malek.

Janet Malek (HEC Forum 31(2):91-102, 2019) argues that a "clinical ethics consultant's religious worldview has no place in developing ethical recommendations or communicating about them with patients, surrogates, and clinicians." She offers five types of arguments in support of this thesis: arguments from (i) consensus, (ii) clarity, (iii) availability, (iv) consistency, and (v) autonomy. This essay shows that there are serious problems for each of Malek's arguments. None of them is sufficient to motivate her thesis (nor are they jointly sufficient). Thus, if it is true that the religious worldview of clinical ethics consultants (CECs) should play no role whatsoever in their work as consultants, this claim will need to be defended on some other ground.

What Is the Minimal Competency for a Clinical Ethics Consult Simulation? Setting a Standard for Use of the Assessing Clinical Ethics Skills (ACES) Tool.

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.

Do we understand the intervention? What complex intervention research can teach us for the evaluation of clinical ethics support services (CESS).

BACKGROUND: Evaluating clinical ethics support services (CESS) has been hailed as important research task. At the same time, there is considerable debate about how to evaluate CESS appropriately. The criticism, which has been aired, refers to normative as well as empirical aspects of evaluating CESS. MAIN BODY: In this paper, we argue that a first necessary step for progress is to better understand the intervention(s) in CESS. Tools of complex intervention research methodology may provide relevant means in this respect. In a first step, we introduce principles of "complex intervention research" and show how CESS fulfil the criteria of "complex interventions". In a second step, we develop a generic "conceptual framework" for "ethics consultation on request" as standard for many forms of ethics consultation in clinical ethics practice. We apply this conceptual framework to the model of "bioethics mediation" to make explicit the specific structural and procedural elements of this form of ethics consultation on request. In a final step we conduct a comparative analysis of two different types of CESS, which have been subject to evaluation research: "proactive ethics consultation" and "moral case deliberation" and discuss implications for evaluating both types of CESS. CONCLUSION: To make explicit different premises of implemented CESS interventions by means of conceptual frameworks can inform the search for sound empirical evaluation of CESS. In addition, such work provides a starting point for further reflection about what it means to offer "good" CESS.

Integrative Clinical Ethics Support in Gender Affirmative Care: Lessons Learned.

Clinical ethics support (CES) for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria (CEGD) at Amsterdam University Medical Center. We specifically aimed to integrate CES into daily work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice.

Religion, Authenticity, and Clinical Ethics Consultation.

A clinical ethics consultant (CEC) may, at times, be called upon to make independent substantive moral judgments and then offer justifications for those judgments. A CEC does not act unprofessionally by utilizing background beliefs that are religious in nature to justify those judgments. It is important, however, for a CEC to make such judgments authentically and, when asked, to offer up one's reasons for why one believes the judgment is true in a transparent fashion.

Content review of pediatric ethics consultations at a cancer center.

BACKGROUND/OBJECTIVES: Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics of ethics consultations in pediatric patients at a cancer center. DESIGN/METHODS: We retrospectively identified ethics consultations performed for patients diagnosed with cancer at ≤21 years of age who were treated in the Department of Pediatrics from 2007 to 2017. Using an established coding schema, two independent reviewers analyzed the content of ethics consultation notes and identified core ethical issues and relevant contextual issues. Demographic, clinical, and consultation-specific data were also collected. RESULTS: Thirty-five consultations were performed for 32 unique patients. The most commonly identified ethical issues were obligation to provide nonbeneficial treatment (29%) and resuscitation preferences (26%). Communication conflicts were the most commonly identified contextual issue (40%). There were two themes that emerged repeatedly but were not a part of the original coding schema-four consultations (11%) that involved physicians questioning their obligation to provide potentially toxic treatment in the setting of poor patient/parent compliance, and two consultations (6%) related to complex risk-benefit analysis in the setting of an invasive procedure with uncertain benefit. CONCLUSIONS: Pediatric ethics consultations are infrequent at this specialty cancer hospital. Ethical issues focused on treatment and end-of-life care and included a diversity of communication conflicts.