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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.
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INTRODUCTION: Globally, healthcare providers (HCPs), hospital administrators, patients and their caretakers are increasingly confronted with complex moral, social, cultural, ethical, and legal dilemmas during clinical care. In high-income countries (HICs), formal and informal clinical ethics support services (CESSs) have been used to resolve bioethical conflicts among HCPs, patients, and their families. There is limited evidence about mechanisms used to resolve these issues as well as experiences and perspectives of the stakeholders that utilize them in most African countries including Uganda. METHODS: This phenomenological qualitative study utilized in-depth interviews (IDIs) and focus group discussions (FGDs) to collect data from Uganda Cancer Institute (UCI) staff, patients, and caretakers who were purposively selected. Data was analyzed deductively and inductively yielding themes and sub-themes that were used to develop a codebook. RESULTS: The study revealed there was no formal committee or mechanism dedicated to resolving ethical dilemmas at the UCI. Instead, ethical dilemmas were addressed in six forums: individual consultations, tumor board meetings, morbidity and mortality meetings (MMMs), core management meetings, rewards and sanctions committee meetings, and clinical departmental meetings. Participants expressed apprehension regarding the efficacy of these fora due to their non-ethics related agendas as well as members lacking training in medical ethics and the necessary experience to effectively resolve ethical dilemmas. CONCLUSION: The fora employed at the UCI to address ethical dilemmas were implicit, involving decisions made through various structures without the guidance of personnel well-versed in medical or clinical ethics. There was a strong recommendation from participants to establish a multidisciplinary clinical ethics committee comprising members who are trained, skilled, and experienced in medical and clinical ethics.
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Consultoria Ética , Ética Clínica , Pesquisa Qualitativa , Humanos , Uganda , Feminino , Masculino , Grupos Focais , Pessoal de Saúde/ética , Neoplasias/terapia , Adulto , Pessoa de Meia-IdadeRESUMO
Clinical Ethics Consultation (CEC) aims to resolve ethical dilemmas at the bedside. Through a structured process, CEC allows practitioners and patients to consult ethicists at times of moral conflict or uncertainty. Over the past few decades, CEC has become an invaluable part of healthcare practice. In Saudi Arabia, however, CEC services remain inexplicably underutilized. This study attempts to understand the factors associated with Saudi physicians' utilization of CEC to better meet the needs of practitioners and patients. Results indicate that although physicians routinely experience moral dilemmas, they seldom request a CEC. This is not due to unfamiliarity, lack of accessibility, or suspicion of ethical expertise. Rather, reluctance is likely due to an ingrained medical cultural stronghold that pressures practitioners to act heroically, and to resolve ethical dilemmas independently. Recommendations to improve the utilization of CEC services include wider availability, active collaborations with clinical practitioners, routine quality improvements, and managerial and national support.
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Recent global events demonstrate that analytical frameworks to aid professionals in healthcare ethics must consider the pervasive role of social structures in the emergence of bioethical issues. To address this, the authors propose a new sociologically informed approach to healthcare ethics that they term "social bioethics." Their approach is animated by the interpretive social sciences to highlight how social structures operate vis-à-vis the everyday practices and moral reasoning of individuals, a phenomenon known as social discourse. As an exemplar, the authors use social bioethics to reframe common ethical issues in psychiatric services and discuss potential implications. Lastly, the authors discuss how social bioethics illuminates the ways healthcare ethics consultants in both policy and clinical decision-making participate in and shape broader social, political, and economic systems, which then cyclically informs the design and delivery of healthcare.
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Bioética , Análise Ética , Humanos , Teoria Ética , Tomada de Decisões , Temas Bioéticos , Atenção à SaúdeRESUMO
INTRODUCTION: Although there have been reports of misbehavior and disrespectful maternal care by healthcare providers worldwide, there are few intervention studies aimed at promoting respectful care, particularly among midwives. RESEARCH OBJECTIVES: The aim of this study was to examine the effect of Moral Case Deliberation (MCD) on the of midwives' knowledge and practice in the field of respectful maternity care. RESEARCH DESIGN AND METHODS: This semi-experimental study involved 46 midwives working in the maternity departments of two hospitals affiliated with Bushehr University of Medical Sciences in 2023. The two hospitals were randomly divided into control and intervention groups. All midwives from both hospitals were included in the study. The Dilemma Method of MCD was implemented for midwives of intervention hospital. The Midwives' Knowledge and Practice of Respectful Maternity Care scale was used for data collection. It was administered both before and two weeks after the intervention. Data were analyzed using SPSS (version 20). ETHICAL CONSIDERATIONS: The study was approved by ethics committee of Bushehr University of Medical Sciences in Bushehr, Iran (ethics code: IR.BPUMS.REC.1402.017). All participants provided written informed consent. FINDINGS: The intervention group showed a significantly greater increase in knowledge scores from pre-test to post-test compared to the control group (p < .001). The intervention group had a significantly higher mean change score in practice self-assessment and practice peer evaluation, from pre-test to post-test, than in the control group (p < .001). DISCUSSION: MCD based on the dilemma method can improve practice in the field of respect-oriented midwifery care by increasing knowledge and potentially changing attitudes. CONCLUSION: The Dilemma Method of MCD improved midwives' knowledge and practice regarding respectful maternity care. This method can be included in the midwifery care quality improvement program to promote respectful maternity care. It is necessary to develop methods for wider dissemination of MCD in the cultural context of Iran.
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Limited data exist in the specific content of pediatric outpatient ethics consults as compared to inpatient ethics consults. Given the fundamental differences in outpatient and inpatient clinical care, we aimed to describe the distinctive nature of ethics consultation in the ambulatory setting. This is a retrospective review at a large, quaternary academic center of all outpatient ethics consults in a 6-year period. Encounter-level demographic data was recorded, and primary ethical issue and contextual features were identified using qualitative conceptual content analysis. A total of 48 consults were identified representing 44 unique patients. The most common primary ethical issue was beneficence and best interest concern comprising 20 (42%) consults, followed by refusal of recommended treatment comprising 11 (23%) consults and patient preference/assent comprising 5 (10%) consults. The most common contextual features were staff-family communication dispute/conflict comprising 28 (58%) consults, followed by legal involvement comprising 25 (52%) consults and quality of life comprising 19 (40%) consults. The most common consulting specialty was hematology/oncology. Ethical issues encountered in the provision of outpatient pediatric care are distinct and differ from those in inpatient consults. Further research is necessary to identify strategies and educational gaps in outpatient ethics consultation to increase its effectiveness and utilization.
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In accordance with standards published by the American Society for Bioethics and Humanities (ASBH), ethics consultants are expected to provide recommendations that align with scholarly literature, professional society statements, law, and policy. However, there are no studies to date that characterize the specific references that ethics consultants and educators use to inform their work. To address this gap, a convenience sample of clinical ethics consultants and educators was surveyed online through two major listservs for clinical ethics, the ASBH Clinical Ethics Consultation Affinity Group (CECAG) and the Association of Bioethics Program Directors (ABPD). Ninety-five ethics consultants and/or educators with diverse educational background, credentials, and experience provided responses. In total, 451 references, 315 of which were unique, were reported. These references were broken into 6 categories after analysis: bioethics literature (divided into articles and books), professional society documents (divided into professional society statements and codes of ethics), federal/state/uniform/case law, hospital/health system policies, official religious teachings, and other. We found extensive variation and minimal overlap in the references respondents used for ethics consultation and education, even when referring to the same topics. Future research directions should include conducting more systematic efforts to characterize the references used by ethics consultants across the US; determining whether demographic characteristics of consultants influence the references used; and ascertaining whether the variation in references used reflects genuine disagreements in consultants' and educators' bioethical analysis or recommendations.
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This is a qualitative examination of ethics consultation requests, outcomes, and ethics committee recommendations at a tertiary/quaternary pediatric hospital in the U.S. The purpose of this review of consults over an 18-year period is to identify specific trends in the types of ethical dilemmas presented in our pediatric setting, the impact of consultation and committee development on the number and type of consults provided, and any clinical features and/or challenges that emerged and contributed to the nature of ethical situations and dilemmas. Furthermore, in reviewing clinical ethics consultation trends for nearly two decades, we can identify topic areas for further ethics education and training for ethics consultants, ethics committee members, and pediatric healthcare teams and professionals based on our experiences. Our study with nearly two decades of data prior to the COVID-19 pandemic can serve as groundwork for future comparisons of consultation requests and ethics support for pediatric hospitals prior to, during, and following a pandemic.
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Selective mutism is an anxiety disorder in which an individual is unable to speak in certain social situations though may speak normally in other settings (Hua & Major, 2016). Selective mutism in adults is rare, though people with this condition might have other methods of communicating their needs outside of verbal communication. Healthcare professionals rely on a patient's ability to communicate to establish if they have decision-making capacity. This commentary responds to a case of a young adult patient with selective mutism and social anxieties that significantly limited his ability to communicate with anyone in the healthcare team. This required a creative, patient-centered approach to engage in meaningful communication.
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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.
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Criança Hospitalizada , Consultoria Ética , Disparidades em Assistência à Saúde , Criança , Humanos , Estudos de Casos e Controles , Etnicidade , Hispânico ou Latino , Estudos Retrospectivos , Brancos , Negro ou Afro-AmericanoRESUMO
Skepticism about ethical expertise has grown common, raising concerns that bioethicists' roles are inappropriate or depend on something other than expertise in ethics. While these roles may depend on skills other than those of expertise, overlooking the role of expertise in ethics distorts our conception of moral advising. This paper argues that motivations to reject ethical expertise often stem from concerns about elitism: either an intellectualist elitism, where some privileged elite have supposedly special access in virtue of expertise in moral theory; or an authoritarian elitism, where our reliance on experts in ethics risks violation of autonomy and democracy. The paper sketches an anti-elitist conception of ethics expertise in bioethics as continuous with an anti-elitist conception of ethics expertise in common moral practice, undercutting the intellectualism, and then uses this anti-elitist conception to reject arguments that ethical expertise violates autonomy or democracy. An anti-elitist picture of ethical expertise both renders it consistent with our general moral practice and allows us to resist skeptical concerns.
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Bioética , Princípios Morais , Humanos , Eticistas , Teoria Ética , Dissidências e DisputasRESUMO
In recent years, there has been a lively (bio-)ethical debate on the nature of moral expertise and the concept of moral experts. However, there is currently no common ground concerning most issues. Against this background, this paper has two main goals. First, in more general terms, it examines some of the problems concerning moral expertise and experts, with a special focus on moral advice and testimony. Second, it applies the results in the context of medical ethics, especially in the clinical setting. By situating the debate in the clinical setting, one arrives at some important conclusions to better understand the relevant concepts and vital problems in the general discussion on moral expertise and the requirements of who counts as a moral expert.
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Temas Bioéticos , Princípios Morais , Humanos , Ética MédicaRESUMO
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.
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Consultoria Ética , Assistência Terminal , Humanos , Ética Clínica , Pessoal de Saúde , DocumentaçãoRESUMO
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.
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Consultoria Ética , Ética Clínica , Masculino , Humanos , Feminino , Tomada de Decisões , Estudos Retrospectivos , Hospitais Universitários , Morte , República da CoreiaRESUMO
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.
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Comitês de Ética Clínica , Consultoria Ética , Humanos , Ética Clínica , Comissão de Ética , HospitaisRESUMO
In recent years, there have been growing calls for nurses to have a formal advanced practice role as nurse ethicists in hospital contexts. Initially proposed in the cultural context of the USA where nurse ethicists have long been recognised, the idea is being advocated in other judications outside of the USA such as the UK, Australia and elsewhere. Such calls are not without controversy, however. Underpinning this controversy are ongoing debates about the theoretical, methodological and political dimensions of clinical ethics support services generally, and more recently where nurses might 'fit' within such a service. In considering whether nurse ethicists ought to have a place in clinical ethics support services, a number of questions arise such as: Is such a role warranted? If so, what credentials should nurses assuming the title of 'nurse ethicist' be required to have? What standards of practice ought nurse ethicists be required to uphold? What is the ultimate role and function of nurse ethicists in hospital contexts? And in what contexts might a nurse ethicist be most useful? In this essay, brief attention will be given to addressing these questions. It will be concluded that, as a minimum, nurses wishing to assume an advanced nursing practice role as a nurse ethicist must have substantive grounding in the foundational knowledge of the disciplines of both moral philosophy and nursing ethics. They must also not lose sight of the ultimate goal of nursing ethics, notably, to promote and advance ethical nursing practice and the provision of 'good' nursing care.
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Ética em Enfermagem , Cuidados de Enfermagem , Humanos , Eticistas , Ética Clínica , Princípios MoraisRESUMO
A key function of clinical ethics services (CESs) is to provide decision-making support to health care providers in ethically challenging cases. Cases referred for ethics consultation are likely to involve diverging views or conflict, or to confront the boundaries of appropriate medical practice. Such cases might also attract legal action due to their contentious nature. As CESs become more prevalent in Australia, this article considers the potential legal liability of a CES and its members. With no reported litigation against a CES in Australia, we look to international experience and first principles. We consider the prospects of a claim in negligence, the most likely legal action against a CES, through application of legal principles to a hypothetical case scenario. We conclude that, although unlikely to be successful at this time, a CES could face answerable claims in negligence brought by patients (and families) who are the subject of ethics case consultation.
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Ética Clínica , Imperícia , Humanos , Responsabilidade Legal , AustráliaRESUMO
The role of religion in clinical ethics consultations is contested. The religion of the ethics consultant can be an important part of the consultation process and improve the quality of a consultation. Practicing neighbor love leads to empathy, which not only can improve the quality of ethics consultations but also creates a space for religion to be part of, but not imposed on, the consultation. The practice of empathy will build trust, rapport, and an intersubjective connection that improves the quality of the consultation. (The views expressed are the author's and not representative of any institution or employer).
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Consultoria Ética , Ética Clínica , Humanos , Empatia , Amor , Religião , EticistasRESUMO
While a significant literature has appeared discussing theoretical ethical concerns regarding COVID-19, particularly regarding resource prioritization, as well as a number of personal reflections on providing patient care during the early stages of the pandemic, systematic analysis of the actual ethical issues involving patient care during this time is limited. This single-center retrospective cohort mixed methods study of ethics consultations during the first surge of the COVID 19 pandemic in Massachusetts between March 15, 2020 through June 15, 2020 aim to fill this gap. Results indicate that there was no significant difference in the median number of monthly consultation cases during the first COVID-19 surge compared to the same period the year prior and that the characteristics of the ethics consults during the COVID-19 surge and same period the year prior were also similar. Through inductive analysis, we identified four themes related to ethics consults during the first COVID-19 surge including (1) prognostic difficulty for COVID-19 positive patients, (2) challenges related to visitor restrictions, (3) end of life scenarios, and (4) family members who were also positive for COVID-19. Cases were complex and often aligned with multiple themes. These patient case-related sources of ethical issues were managed against the backdrop of intense systemic ethical issues and a near lockdown of daily life. Healthcare ethics consultants can learn from this experience to enhance training to be ready for future disasters.
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COVID-19 , Consultoria Ética , Humanos , COVID-19/epidemiologia , Pandemias , Estudos Retrospectivos , Controle de Doenças Transmissíveis , Centros Médicos AcadêmicosRESUMO
Within this paper, we discuss Moral Distress Reflective Debriefs as a promising approach to address and mitigate moral distress experienced by healthcare professionals. We briefly review the empirical and theoretical literature on critical incident stress debriefing and psychological debriefing to highlight the potential benefits of this modality. We then describe the approach that we take to facilitating reflective group discussions in response to morally distressing patient cases ("Moral Distress Reflective Debriefs"). We discuss how the debriefing literature and other clinical ethics activities influenced the development of our approach. In particular, we focus on the role of the clinical ethicist as a facilitator with particular emphasis on encouraging perspective-taking and nurturing ethical attunement in a supportive manner. We suggest that this approach reduces the narrowing effects of frustration and anger that are often reported when individuals experience moral-constraint distress. Finally, we provide an example of Moral Distress Reflective Debriefs, elucidating how this supportive process complements ethics consultation and can mitigate the negative effects of moral distress.