Analysis of 20 Years of Ethics Consultations at a U.S. Children's Hospital.

AbstractEmpirical studies of pediatric clinical ethics cases are scant in the biomedical and bioethics literature. In this study, more than 100 detailed records of clinical ethics consultations spanning from 2000 to 2020 at a moderately sized U.S. Mid-Atlantic children's hospital were abstracted and analyzed. Findings of the analysis were generally consistent with other studies in pediatric clinical ethics, with additional insight into aspects of moral distress associated with cases, family engagement with consultations, and other characteristics of interest also documented. Over the 20-year time frame, ethics consults were completed on average twice a year, with a detectable upward trend. Consultations were requested across the spectrum of services and units within the hospital, with critical care environments represented most frequently and genetic and neurological conditions being the most common primary diagnoses. Ethical analysis most commonly related to questions around the principles of autonomy and beneficence.

What Factors Contribute to Ethical Problems in Patient Care? A Scoping Review and Case Series of Clinical Ethics Consultations.

AbstractBackground: Healthcare professionals (HCPs) are frequently exposed to ethical problems in patient care that can affect the quality of care. Understanding risk factors for ethical problems may help practitioners to address these problems at an early stage. This study aims to provide an overview of ethical risk factors in patient care. Risk factors known from the literature and those found in clinical ethics consultation (CEC) cases are reviewed. METHODS: A scoping review of ethical risk factors in patient care and a CEC case series were conducted, analyzing the documentation (consultation reports, feedback forms, electronic medical records) of 204 CECs from 2012 to 2020 at a somatic and a psychiatric university hospital in Basel, Switzerland. RESULTS: Ninety-nine ethical risk factors were identified in nine articles, related to four risk areas: patient (41), family (12), healthcare team (29), and system (17). Eighty-seven of these risk factors were documented at least once in the CEC case series. The most prevalent risk factors in the consultations studied were patient vulnerability (100%), missing or unclear hospital ethics policy (97.1%), shift work (83.3%), lack of understanding between patient and HCP (73.5%), poor communication (66.2%), disagreement between patient and HCP about care (58.8%), and multiple care teams (53.4%). The prevalence differed significantly by medical specialty. CONCLUSIONS: There are highly prevalent ethical risk factors at all levels of clinical care that may be used to prevent ethical problems. Further empirical research is needed to analyze risk ratios and to develop specific risk profiles for different medical specialties.

Advocacy and Bioethics: Aspiration, Obligation, and Negotiation.

AbstractA long-standing tenet of healthcare clinical ethics consultation has involved the neutrality of the ethicist. However, recent pressing societal issues have challenged this viewpoint. Perhaps now more than ever before, ethicists are being called upon to take up roles in public health, policy, and other community-oriented endeavors. In this article, I first review the concept of professional advocacy and contrast this conceptualization with the role of patient advocate, utilizing the profession of nursing as an exemplar. Then, I explore the status of advocacy in clinical ethics and how this conversation intersects with the existing professional obligations of the bioethicist, arguing that the goals of ethics consultation and ethical obligations of the clinical ethicist are compatible with the role of professional advocate. Finally, I explore potential barriers to professional advocacy and offer suggestions for a path forward.

Intersectionality as a tool for clinical ethics consultation in mental healthcare.

Bioethics increasingly recognizes the impact of discriminatory practices based on social categories such as race, gender, sexual orientation or ability on clinical practice. Accordingly, major bioethics associations have stressed that identifying and countering structural discrimination in clinical ethics consultations is a professional obligation of clinical ethics consultants. Yet, it is still unclear how clinical ethics consultants can fulfill this obligation. More specifically, clinical ethics needs both theoretical tools to analyze and practical strategies to address structural discrimination within clinical ethics consultations. Intersectionality, a concept developed in Black feminist scholarship, is increasingly considered in bioethical theory. It stresses how social structures and practices determine social positions of privilege and disadvantage in multiple, mutually co-constitutive systems of oppression. This article aims to investigate how intersectionality can contribute to addressing structural discrimination in clinical ethics consultations with a particular focus on mental healthcare. To this end, we critically review existing approaches for clinical ethics consultants to address structural racism in clinical ethics consultations and extend them by intersectional considerations. We argue that intersectionality is a suitable tool to address structural discrimination within clinical ethics consultations and show that it can be practically implemented in two complementary ways: 1) as an analytic approach and 2) as a critical practice.

Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation.

BACKGROUND: Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. METHOD: Based on experiences and research into MCD facilitators' needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. RESULTS: The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. CONCLUSIONS: This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools.

'If you build it, they will come to the wrong door: evaluating patient and caregiver-initiated ethics consultations via a patient portal'.

OBJECTIVES: Memorial Sloan Kettering Cancer Center (MSK) sought to empower patients and caregivers to be more proactive in requesting ethics consultations. METHODS: Functionality was developed on MSK's electronic patient portal that allowed patients and/or caregivers to request ethics consultations. The Ethics Consultation Service (ECS) responded to all requests, which were documented and analysed. RESULTS: Of the 74 requests made through the portal, only one fell under the purview of the ECS. The others were primarily requests for assistance with coordinating clinical care, hospital resources or frustrations with the hospital or clinical team. DISCUSSION: To better empower patients and caregivers to engage Ethics, healthcare organisations and ECSs must first provide them with accessible, understandable and iterative educational resources. CONCLUSION: After 19.5 months, the 'Request Ethics Consultation' functionality on the patient portal was suspended. Developing resources on the role of Ethics for our patients and caregivers remains a priority.

Characterization of patients requiring inpatient hospital ethics consults- A single center study.

INTRODUCTION: Ethics consultations are often needed at difficult junctures of medical care. However, data on the nature of how patient characteristics, including race/ethnicity, language, and diagnosis, affect ethics consult outcomes are lacking. METHODS: We performed a retrospective cohort study of all patients who were seen by the Ethics Consult Service between 2017 and 2021 at a large tertiary academic center with the aim of determining whether patient demographic and clinical factors were associated with the timing of ethics consult requests and recommendations of the ethics team. RESULTS: We found that patients admitted for COVID-19 had significantly longer median times to consult from admission compared with other primary diagnoses (19 vs 8 days respectively, p = 0.015). Spanish-speaking patients had longer median times to consult from admission compared to English speaking patients (20 vs 7 days respectively, p = 0.008), indicating that language barriers may play a role in the timing of ethics consultation. CONCLUSIONS: This study demonstrates the need to consider clinical and demographic features when planning and prioritizing ethics consultations at large institutions to enhance consult efficiency, resource utilization, and patient experience and autonomy.

Formal Ethics Consultation in Extracorporeal Membrane Oxygenation Patients: A Single-Center Retrospective Cohort of a Quaternary Pediatric Hospital.

OBJECTIVE: To examine characteristics associated with formal ethics consultation (EC) referral in pediatric extracorporeal membrane oxygenation (ECMO) cases, and document ethical issues presented. DESIGN: Retrospective cohort study using mixed methods. SETTING: Single-center quaternary pediatric hospital. PATIENTS: Patients supported on ECMO (January 2012 to December 2021). INTERVENTIONS: We compared clinical variables among ECMO patients according to the presence of EC. We defined optimal cutoffs for EC based on run duration, ICU length of stay (LOS), and sum of procedures or complications. To identify independent explanatory variables for EC, we used a forward stepwise selection multivariable logistic regression model. EC records were thematically characterized into ethical issues. MEASUREMENTS AND MAIN RESULTS: Of 601 ECMO patients and 225 patients with EC in 10 years, 27 ECMO patients received EC (4.5% of ECMO patients, 12% of all ECs). On univariate analysis, use of EC vs. not was associated with multiple ECMO runs, more complications/procedures, longer ICU LOS and ECMO duration, cardiac admissions, decannulation outcome, and higher mortality. Cutoffs for EC were ICU LOS >52 days, run duration >160 hours, and >6 complications/procedures. Independent associations with EC included these three cutoffs and older age. The model showed good discrimination (area under the curve 0.88 [0.83, 0.93]) and fit. The most common primary ethical issues were related to end-of-life, ECMO discontinuation, and treatment decision-making. Moral distress was cited in 22 of 27 cases (82%). CONCLUSION: EC was used in 4.5% of our pediatric ECMO cases, with most ethical issues related to end-of-life care or ECMO discontinuation. Older age, longer ICU LOS, prolonged runs, and multiple procedures/complications were associated with greater odds for EC requests. These data highlight our single-center experience of ECMO-associated ethical dilemmas. Historical referral patterns may guide a supported decision-making framework. Future work will need to include quality improvement projects for timely EC, with evaluation of impacts on relevant endpoints.

Frequency of Perceived Conflict between Families and Clinicians at Time of Clinical Ethics Consultation in Hospitalized Children.

BACKGROUND: Little is known about the frequency of conflict between clinicians and families at the time of pediatric clinical ethics consultation (CEC) and what factors are associated with the presence of conflict. METHODS: We conducted a retrospective cohort study at a single, tertiary urban US pediatric hospital that included all hospitalized patients between January 2008 and December 2019 who received CEC. Utilizing the hospital's CEC database that requires documentation of the presence of conflict by the consultant at the time of CEC, we determined the frequency and types of perceived conflict between families and clinicians. We also assessed the bivariable association between conflict and patient age, patient- or family-reported race/ethnicity, language for care, insurance status, clinical setting, and consultant involvement. RESULTS: Perceived conflict between clinicians and families was present in 44% (91/209) of CEC. We observed a higher occurrence of clinician-family conflict within certain consult topics than others, in particular, informed consent/parental permission (69%), cultural considerations (67%), benefit/harm assessment (58%), and limitation of life-sustaining treatment (58%). We found no other significant associations between the presence of perceived conflict and patient sociodemographic factors or CEC factors. CONCLUSIONS: Conflict between healthcare teams and families appears common in CEC, particularly with certain consult topics. Further study is needed to better understand conflict types, causes of conflicts, management and mediation strategies, and outcomes.

Fostering moral resilience through moral case deliberation.

Moral distress forms a major threat to the well-being of healthcare professionals, and is argued to negatively impact patient care. It is associated with emotions such as anger, frustration, guilt, and anxiety. In order to effectively deal with moral distress, the concept of moral resilience is introduced as the positive capacity of an individual to sustain or restore their integrity in response to moral adversity. Interventions are needed that foster moral resilience among healthcare professionals. Ethics consultation has been proposed as such an intervention. In this paper, we add to this proposition by discussing Moral Case Deliberation (MCD) as a specific form of clinical ethics support that promotes moral resilience. We argue that MCD in general may contribute to the moral resilience of healthcare professionals as it promotes moral agency. In addition, we focus on three specific MCD reflection methods: the Dilemma Method, the Aristotelian moral inquiry into emotions, and CURA, a method consisting of four main steps: Concentrate, Unrush, Reflect, and Act. In practice, all three methods are used by nurse ethicists or by nurses who received training to facilitate reflection sessions with these methods. We maintain that these methods also have specific elements that promote moral resilience. However, the Dilemma Method fosters dealing well with tragedy, the latter two promote moral resilience by including attention to emotions as part of the reflection process. We will end with discussing the importance of future empirical research on the impact of MCD on moral resilience, and of comparing MCD with other interventions that seek to mitigate moral distress and promote moral resilience.

Perspectives on the role of the nurse ethicist.

This paper offers four contrasting perspectives on the role of the nurse ethicist from authors based in different areas of world, with different professional backgrounds and at different career stages. Each author raises questions about how to understand the role of the nurse ethicist. The first author reflects upon their career, the scope and purpose of their work, ultimately arguing that the distinction between 'nurse ethicist' and 'clinical ethicist' is largely irrelevant. The second author describes the impact and value that a nurse in an ethics role plays, highlighting the 'tacit knowledge' and 'lived experience' they bring to clinical ethics consultation. However, the second author also warns that the 'nurse ethicist' must be cautious in their approach to avoid being viewed as a resource only for nurses. The third author questions the introduction of additional professional distinctions such as 'nurse ethicist' on the basis that distinctions threaten the creation of egalitarian healthcare systems, while also acknowledging that clinical ethicists ought not strive for objective attachment in their work. In direct contrast, the final author suggests that the nurse ethicist can play a pivotal role in highlighting and addressing ethical challenges that are specific to nurses. These four short pieces raise questions and point to concepts that will be expanded upon and debated throughout this special issue of Nursing Ethics.

Beyond the consult question: Nurse ethicists as architects of moral spaces.

Nurse Ethicists bring a unique perspective to clinical ethics consultation. This perspective provides an appreciation of ethical tensions that will exist beyond the consult question into the moral space of patient care. These tensions exist even when an ethically preferable plan of action is identified. Ethically appropriate courses of action can still lead to moral dilemmas for others. The nurse ethicist provides a lens well suited to identify and respond to these dilemmas. The nurse-patient relationship is the ethical foundation of nursing practice and this relational ontology is well suited to addressing ethical dilemmas that exist prior to and beyond the initial consult question. This paper will describe one nurse ethicist's phronetic and pragmatic approach to a clinical ethics consult elucidated through feminist ethics and systems thinking. This paper will describe the theoretical basis for this method, present a case, and describe how this consultation approach provides a rich analysis based around relationships and responsibilities that also highlights the important ethical tensions within the social structure that exists around the patient and continue after the consult question is answered.

Ethical Issues Referred to Clinical Ethics Support at a University Hospital in Korea: Three-Year Experience After Enforcement of Life-Sustaining Treatment Decisions Act.

BACKGROUND: Clinical ethics support is a form of preventive ethics aimed at mediating ethics-related conflicts and managing ethical issues arising in the healthcare setting. However, limited evidence exists regarding the specific ethical issues in clinical practice. This study aimed to explore the diverse ethical issues of cases referred to clinical ethics support after the new legislation on hospice palliative care and end-of-life decision-making was implemented in Korea in 2018. METHODS: A retrospective study of cases referred to clinical ethics support at a university hospital in Korea from February 2018 to February 2021 was conducted. The ethical issues at the time of referral were analyzed via qualitative content analysis of the ethics consultation-related documents. RESULTS: A total of 60 cases of 57 patients were included in the study, of whom 52.6% were men and 56.1% were older than 60 years of age. The majority of cases (80%) comprised patients from the intensive care unit. One-third of the patients were judged as being at the end-of-life stage. The most frequent ethical categories were identified as goals of care/treatment (78.3%), decision-making (75%), relationship (41.7%), and end-of-life issues (31.7%). More specifically, best interests (71.7%), benefits and burdens/harms (61.7%), refusal (53.3%), and surrogate decision-making (33.3%), followed by withholding or withdrawal (28.3%) were the most frequent ethical issues reported, which became diversified by year. In addition, the ethical issues appeared to differ by age group and judgment of the end-of-life stage. CONCLUSION: The findings of this study expand the current understanding of the diverse ethical issues including decision-making and goals of care/treatment that have been referred to clinical ethics support since the enforcement of the new legislation in Korea. This study suggests a need for further research on the longitudinal exploration of ethical issues and implementation of clinical ethics support in multiple healthcare centers.

Clinical Ethics Committee in an Oncological Research Hospital: two-years Report.

RESEARCH QUESTION AND AIM: Clinical Ethics Committees (CECs) aim to support healthcare professionals (HPs) and healthcare organizations to deal with the ethical issues of clinical practice. In 2020, a CEC was established in an Oncology Research Hospital in the North of Italy. This paper describes the development process and the activities performed 20 months from the CEC's implementation, to increase knowledge about CEC's implementation strategy. RESEARCH DESIGN: We collected quantitative data related to number and characteristics of CEC activities carried out from October 2020 to June 2022 using the CEC internal database. Data were reported descriptively and compared with data from the literature to provide a complete overview of the CEC's development and implementation process. PARTICIPANTS AND RESEARCH CONTEXT: The study has been conducted at the local health authority (LHA) of Reggio Emilia. It is a report of the activities provided by the CEC, where no HPs or patients were involved. ETHICAL CONSIDERATIONS: The report is part of a larger study named EVAluating a Clinical Ethics Committee implementation process (EvaCEC), which has been approved by the Local Ethics Committee (AUSLRE Protocollo n° 2022/0026554 of 24/02/2022). EvaCEC is also the first author's PhD project. FINDINGS: In total, the CEC performed 7 ethics consultations (EC), published three policies related to particular ethical questions of clinical and organizational practice, provided one educational online course on ethics consultation targeting employed HPs, and promoted a specific dissemination process among the different departments of the LHA. According to our results, the CEC widely fulfilled the standard threefold set of clinical ethics support services tasks (namely, ethics consultation, ethics education, and policy development), but further investigations are needed to evaluate the CEC's impact on clinical practice. CONCLUSION: Our findings may increase knowledge regarding the composition, role, and tasks of a CEC in an Italian setting, informing future strategies and efforts to regulate these institutions officially.

Clinical ethics consultation documentation in the era of open notes.

BACKGROUND: In 2021, federal rules from the 21st Century Cures Act mandated most clinical notes be made available in real-time, online, and free of charge to patients, a practice often referred to as "open notes." This legislation was passed to support medical information transparency and reinforce trust in the clinician-patient relationship; however, it created additional complexities in that relationship and raises questions of what should be included in notes intended to be read by both clinicians and patients. MAIN BODY: Even prior to open notes, how an ethics consultant should document a clinical ethics consultation was widely debated as there can be competing interests, differing moral values, and disagreement about pertinent medical information in any given encounter. Patients can now access documentation of these discussions through online portals which broach sensitive topics related to end-of-life care, autonomy, religious/cultural conflict, veracity, confidentiality, and many others. Clinical ethics consultation notes must be ethically robust, accurate, and helpful for healthcare workers and ethics committee members, but now also sensitive to the needs of patients and family members who can read them in real-time. CONCLUSION: We explore implications of open notes for ethics consultation, review clinical ethics consultation documentation styles, and offer recommendations for documentation in this new era.

Disparities in Clinical Ethics Consultation among Hospitalized Children: A Case-Control Study.

OBJECTIVE: To identify sociodemographic factors associated with pediatric clinical ethics consultation (CEC). STUDY DESIGN: Matched, case-control study at a single center, tertiary pediatric hospital in the Pacific Northwest. Cases (patients hospitalized January 2008-December 2019 with CEC) were compared with controls (those without CEC). We determined the association of the outcome (CEC receipt) with exposures (race/ethnicity, insurance status, and language for care) using univariate and multivariable conditional logistic regression. RESULTS: Of 209 cases and 836 matched controls, most cases identified as white (42%), had public/no insurance (66%), and were English-speaking (81%); most controls identified as white (53%), had private insurance (54%), and were English-speaking (90%). In univariate analysis, patients identifying as Black (OR: 2.79, 95% CI: 1.57, 4.95; P < .001), Hispanic (OR: 1.92, 95% CI: 1.24, 2.97; P = .003), with public/no insurance (OR: 2.21, 95% CI: 1.58, 3.10; P < .001), and using Spanish language for care (OR: 2.52, 95% CI: 1.47, 4.32; P < .001) had significantly increased odds of CEC, compared with patients identifying as white, using private insurance, and using English for care, respectively. In multivariable regression, Black race (adjusted OR: 2.12, 95% CI: 1.16, 3.87; P = .014) and public/no insurance (adjusted OR: 1.81, 95% CI: 1.22, 2.68; P = .003) remained significantly associated with receipt of CEC. CONCLUSIONS: We found disparities in receipt of CEC by race and insurance status. Further study is needed to determine the causes of these disparities.