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.

Transformative Justice in Ethics Consultation.

Clinical ethics consultants bear witness to the direct harms of intersecting axes of oppression-such as racism and classism-as they impinge on elucidating and resolving ethical dilemmas in health care. Health Care Ethics Consultation (HCEC) professional guidance supports recognizing and analyzing power dynamics and social-structural obstacles to good care. However, the most relied upon bioethical principles in clinical ethics have been criticized for insufficiency in this regard. While individual ethics consultants have found ways to expand their approaches, they do so in an ad hoc way without frameworks to guide consistency. Motivated by the practical expertise of clinical ethicists, this essay offers a new framework to support openness to analyzing power imbalances and respecting marginalized voices and values. This framework is grounded in transformative justice, where the aim is to take responsibility for oppression by centering and responding to moral perspectives and value systems that are all too often silenced.

Addressing Racism in the Healthcare Encounter: The Role of Clinical Ethics Consultants.

Clinical ethicists move in different environments and interface with a variety of stakeholders, and are therefore uniquely positioned to answer the call for equity and anti-racism. We describe why a clinical ethicist should contribute to anti-racism efforts and describe general approaches for addressing racism across institutional contexts, including: (1) addressing racism as bedside clinical ethics consultant, (2) addressing wider lens of anti-racism work across multiple ethics consults over time, and (3) addressing racism at the organizational level.

Addressing racism in the healthcare encounter: The role of clinical ethics consultants.

Justice is a core principle in bioethics, and a fair opportunity to achieve health is central to this principle. Racism and other forms of prejudice, discrimination, or bias directed against people on the basis of their membership in a particular racial or ethnic group are known contributors to health inequity, defined as unjust differences in health or access to care. Though hospital-based ethics committees and consultation services routinely address issues of justice that arise in the course of patient care, there is variability in whether and how racism and other causes of health inequities are addressed. In this paper, we describe a novel structure and process for addressing health equity within clinical ethics consultation. In addition, we discuss the barriers and challenges to its success, many of which are rooted in the identities, norms and assumptions that underlie traditional clinical ethics consultation. We offer pragmatic recommendations and conclude with unresolved questions that remain as we work to adapt the structure of a clinical ethics consultation service to improve attention to issues of health equity and promote anti-racism in patient care and institutional policy.

Ethics Consultation in United States Hospitals: Assessment of Training Needs.

BACKGROUND: To 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. METHODS: As 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. RESULTS: The 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. CONCLUSIONS: These 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.

Antiracist Activism in Clinical Ethics: What's Stopping Us?

Although justice is a central principle in clinical ethics, work that centers social justice is often marginalized in clinical ethics. In addition to institutional barriers that may be preventing clinical ethicists from becoming the activists that Meyers argues we should be, we must also recognize the barriers embedded in the field of clinical ethics itself. As clinical ethicists, we have an opportunity to support anti-racism work in particular by altering our own organizational structures to be more inclusive and reflective of the Black, Indigenous, and other communities of color we serve, enhancing clinical ethics education and training by making critical theories foundational, and decolonizing our clinical ethics consultation tools and practices.

COVID-19-Related Ethics Consultations at a Cancer Center in New York City: A Content Review of Ethics Consultations During the Early Stages of the Pandemic.

PURPOSE: The coronavirus disease 2019 (COVID-19) pandemic has raised a variety of ethical dilemmas for health care providers. Limited data are available on how a patient's concomitant cancer diagnosis affected ethical concerns raised during the early stages of the pandemic. METHODS: We performed a retrospective review of all COVID-related ethics consultations registered in a prospectively collected ethics database at a tertiary cancer center between March 14, 2020, and April 28, 2020. Primary and secondary ethical issues, as well as important contextual factors, were identified. RESULTS: Twenty-six clinical ethics consultations were performed on 24 patients with cancer (58.3% male; median age, 65.5 years). The most common primary ethical issues were code status (n = 11), obligation to provide nonbeneficial treatment (n = 3), patient autonomy (n = 3), resource allocation (n = 3), and delivery of care wherein the risk to staff might outweigh the potential benefit to the patient (n = 3). An additional nine consultations raised concerns about staff safety in the context of likely nonbeneficial treatment as a secondary issue. Unique contextual issues identified included concerns about public safety for patients requesting discharge against medical advice (n = 3) and difficulties around decision making, especially with regard to code status because of an inability to reach surrogates (n = 3). CONCLUSION: During the early pandemic, the care of patients with cancer and COVID-19 spurred a number of ethics consultations, which were largely focused on code status. Most cases also raised concerns about staff safety in the context of limited benefit to patients, a highly unusual scenario at our institution that may have been triggered by critical supply shortages.

Between Crisis and Convention: How Should We Address Contingency?

The Covid-19 pandemic has brought about renewed conversation about equality and equity in the distribution of medical resources. Much of the recent conversation has focused on creating and implementing policies in times of crisis when resources are exhausted. Depending on how the pandemic develops, some communities may implement crisis measures, but many health care facilities are currently experiencing shortages of staff and materials even if the facilities have not implemented crisis standards. There is a need for shared conversation about equality and equity in these times of contingency between conventional and crisis medicine. To respond well to these challenges, I recommend that institutions rely on policy, professional education, and ethics consultation. As is the case with crisis policies, creating contingency policies requires that health care professionals decide on how, specifically, to achieve equity. A policy is only as effective as its implementation; therefore, institutions should invest in context-specific education on contingency policies. Finally, ethics consultation should be available for questions that contingency policies cannot address.

Variation in Clinical Ethics Fellowship Programs: Lessons from the Field.

Given the enduring debate over what constitutes quality, and therefore appropriate training, in clinical ethics consultation, it is unsurprising that there is variation in the structure and content of clinical ethics fellowship programs. However, this variation raises questions about the value of fellowship training when the ethicists that emerge from these programs might be quite different. The specifics of fellowship programs are largely internal. As such, the extent of variation and whether such variation is problematic remains unclear. In this article, we summarize lessons learned from discussions between fellows, their mentors and program directors at the 2020 Clinical Ethics UnConference, and outline some possible ways to advance the conversation about variation in fellowship programs and training. We argue for the more open sharing of training specifics in order to help break down the siloed nature of fellowship programs. Greater transparency could, firstly, allow for more robust reflection on and refinement of training practices and, secondly, allow us to better balance professionally appropriate consistency with unavoidable or desirable variation based on local norms, culture and leadership.

Evaluating assessment tools of the quality of clinical ethics consultations: a systematic scoping review from 1992 to 2019.

BACKGROUND: Amidst expanding roles in education and policy making, questions have been raised about the ability of Clinical Ethics Committees (CEC) s to carry out effective ethics consultations (CECons). However recent reviews of CECs suggest that there is no uniformity to CECons and no effective means of assessing the quality of CECons. To address this gap a systematic scoping review of prevailing tools used to assess CECons was performed to foreground and guide the design of a tool to evaluate the quality of CECons. METHODS: Guided by Levac et al's (2010) methodological framework for conducting scoping reviews, the research team performed independent literature reviews of accounts of assessments of CECons published in six databases. The included articles were independently analyzed using content and thematic analysis to enhance the validity of the findings. RESULTS: Nine thousand sixty-six abstracts were identified, 617 full-text articles were reviewed, 104 articles were analyzed and four themes were identified - the purpose of the CECons evaluation, the various domains assessed, the methods of assessment used and the long-term impact of these evaluations. CONCLUSION: This review found prevailing assessments of CECons to be piecemeal due to variable goals, contextual factors and practical limitations. The diversity in domains assessed and tools used foregrounds the lack of minimum standards upheld to ensure baseline efficacy. To advance a contextually appropriate, culturally sensitive, program specific assessment tool to assess CECons, clear structural and competency guidelines must be established in the curation of CECons programs, to evaluate their true efficacy and maintain clinical, legal and ethical standards.

The Hang Up.

Over the past year, our ethics service has had numerous consultations involving patients who use the emergency department for regular dialysis. Sometimes, they have access to outpatient hemodialysis that they forgo; other times, they've been "fired" from this kind of outpatient facility, and so the ED is their last option. In most of these cases, we're called because the patient is disruptive once admitted to the ICU and behavior plans haven't helped. But the call from a resident this March 2020 morning was different, the patient had end-stage renal disease and often missed hemodialysis, but he wasn't disruptive. "It's just that he comes in after using cocaine, and given scarcity with the coronavirus and ICU beds…." I have come to think that this is one of the more insidious effects of the pandemic: that there will be a resurgence of the view that some patients deserve health care by virtue of their compliant behavior and that those who are nonadherent don't.

Ethics Consultations Related to Opioid Use Disorder.

BACKGROUND: The opioid epidemic has resulted in an increased number of patients with opioid use disorder (OUD) hospitalized for serious medical conditions. The intersection between hospital ethics consultations and the opioid crisis has not received significant attention. OBJECTIVE: The aim of this study was to characterize ethics consult questions among inpatients with OUD at our institution, Massachusetts General Hospital. METHODS: We conducted a single-center retrospective cohort study of ethics consultations from January 1, 1993 to December 31, 2017 at Massachusetts General Hospital. RESULTS: Between 1993 and 2017, OUD played a central role in ethics consultations in 43 of 1061 (4.0%) cases. There was an increase in these requests beginning in 2009, rising from 1.4% to 6.8% of consults by 2017. Compared with other ethics cases, individuals with OUD were significantly younger (P < 0.001), more likely to be uninsured or underinsured (P < 0.001), and more likely to have a comorbid mental health diagnosis (P = 0.001). The most common reason for consultation involved continuation of life-sustaining treatment in the setting of overdose with neurological injury or severe infection. Additional reasons included discharge planning, challenges with pain management and behavior, and the appropriateness of surgical intervention, such as repeat valve replacement or organ transplant. Health care professionals struggled with their ethical obligations to patients with OUD, including when to treat pain with narcotics and how to provide longitudinal care for patients with limited resources outside of the hospital. CONCLUSION: The growing opioid epidemic corresponds with a rise in ethics consultations for patients with OUD. Similar factors associated with OUD itself, including comorbid mental health diagnoses and concerns about relapse, contributed to the ethical complexities of these consults.

Developing clinical ethics support for an Australian Health Service: A survey of clinician's experiences and views.

BACKGROUND: International developments suggest that providing clinical ethics services to help clinicians negotiate ethical issues that arise in clinical practice is beneficial and reflects best practice in promoting high ethical standards and patient-centered care. The aim of this study was to explore the needs and experiences of clinical staff members to inform the development of future clinical ethics support. METHODS: Health professionals at a large regional health service completed an online survey containing questions about the frequency of ethical and legal issues encountered in clinical practice, the type of situations that gave rise to the ethical and/or legal uncertainty or concern, how clinicians currently address these issues, and what support would be welcome. RESULTS: The survey was completed by 369 staff members, including 61% with more than 10 years in the profession and 51% in nursing/midwifery. Two-thirds (66%) indicated they often considered ethical implications of their clinical decisions, and half (49%) often considered the legal implications. More than half (58%) were often/occasionally concerned about the ethically right thing to do. Patient requests for borderline treatment (47%), staff disagreements about patient care (48%), and patients declining recommended treatment (54%) were the most frequent reasons given for ethical or legal uncertainty. Sixty-nine percent of respondents indicated that the way their department addressed ethical issues could be improved and 85% agreed that there is a need for more discussion on ethical issues. The majority (82%) of respondents had encountered ethically challenging clinical situations where additional support would have helped. Common approaches to issues were discussion with colleagues/supervisor (91.1%), discussion at handover/group forums (50.8%), and consultation with guidelines/protocols (60.9%). CONCLUSIONS: A majority of clinical staff members surveyed have encountered ethically/legally challenging cases daily for which they have often sought additional advice. This study indicates that many clinical staff members would welcome some form of additional clinical ethics support including advice and education.

Application of the rapid ethical assessment approach to enhance the ethical conduct of longitudinal population based female cancer research in an urban setting in Ethiopia.

BACKGROUND: Rapid Ethical Assessment (REA) is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. METHODS: Qualitative study employing rapid ethnographic approach was conducted from May-July, 2017, at the Tikur Anbessa Specialized Referral Hospital. In-depth and key informants' interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. RESULTS: Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient's time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term "cancer" was associated with fear and anxiety. Alternatively, uses of phrases like "breast or cervical illness/disease" were suggested during patient interviews. CONCLUSIONS: Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients.

When Societal Structural Issues Become Patient Problems: The Role of Clinical Ethics Consultation.

The debate about health insurance coverage and the related issue of unequal access to health care turn on fundamental questions of justice, but for an individual patient like DM, the abstract question about who is deserving of health insurance becomes a very concrete problem that has a profound impact on care and livelihood. DM's circumstances left him stuck in the hospital. A satisfactory discharge plan remained elusive; his insurance coverage severely limited the number and type of facilities that would accept him; and his inadequate engagement in his own rehabilitation process limited discharge options even further. Despite extensive involvement with the psychiatry, social work, physical therapy, and occupational therapy teams, DM consistently made "bad" decisions. He repeatedly refused antibiotics and did not consistently work with rehab services to improve his strength and mobility. Although the clinicians wanted to provide him with the best care possible, he often seemed unwilling to do the things necessary to achieve this care-or perhaps his depression rendered him unable to do so. He also tended to take out his frustration on staff members caring for him. All of this was, in turn, very frustrating for the staff. It may be easy, however, to make too much of DM's role, to see his choices as more important than his circumstances. A major goal of the ethics consultants was to reframe DM's predicament for the staff members involved in his care.

Meaningful Use of Electronic Health Records for Quality Assessment and Review of Clinical Ethics Consultation.

Evolving practice requires peer review of clinical ethics (CE) consultation for quality assessment and improvement. Many institutions have identified the chart note as the basis for this process, but to our knowledge, electronic health record (EHR) systems are not necessarily designed to easily include CE consultation notes. This article provides a framework for the inclusion of CE consultation notes into the formal EHR, describing a developed system in the Epic EHR that allows for the elaborated electronic notation of the CE chart note. The implementation of the "meaningful use" criteria for EHR, mandated by the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, requires that health professionals meet certain standards for quality, efficiency, and safety, all of which overlap with the goals of standardization, peer review, and quality improvement within CE consultation.

Evaluating the Inpatient Pediatric Ethical Consultation Service.

OBJECTIVES: Pediatric ethical consultation services (ECSs) have been proliferating at medical centers, with little data available on evaluating their implementation. The objective of this study was to evaluate the pediatric ECS and understand the ethical issues occurring within a single quaternary-level pediatric hospital. METHODS: A retrospective chart review of documented ethics consultations at a large pediatric hospital from November 2010 to November 2013 was performed and data was abstracted per the US Department of Veterans Affairs' Domains of Ethics in Health Care. An anonymous, prospective survey regarding ethical issues encountered was distributed electronically to ∼3500 inpatient staff from November 2013 through January 2014. Ethical domains, demographics, feelings of distress by staff, and location of occurrence data were collected. These data were compared with formally documented ethics consults from the retrospective chart review and ECS activity during the same period. RESULTS: A total of 47 ethics consults were documented between 2010 and 2013, primarily in the domains of end-of-life care (19; 40%) and shared decision-making (17; 36%). Sixty-three staff members (92% female; 42% nurses; 20% attending physicians) logged an encountered ethical issue between November 2013 and January 2014, corresponding to only 5 documented ethics consults in the same time period. Domains included end-of-life care (18; 28.5%), shared decision-making (13; 20.6%), everyday workplace (11; 17.4%), professionalism (8; 12.6%), and resource allocation (7; 11%). Eighty-one percent of subjects reported personal or professional distress. CONCLUSIONS: On the basis of this single-center study in which we reviewed formal documentation, we determined that formal pediatric ECSs are underused, particularly for ethical domains that cause staff members moral distress.