Challenging misconceptions about clinical ethics support during COVID-19 and beyond: a legal update and future considerations.

The pace of change and, indeed, the sheer number of clinical ethics committees (not to be confused with research ethics committees) has accelerated during the COVID-19 pandemic. Committees were formed to support healthcare professionals and to operationalise, interpret and compensate for gaps in national and professional guidance. But as the role of clinical ethics support becomes more prominent and visible, it becomes ever more important to address gaps in the support structure and misconceptions as to role and remit. The recent case of Great Ormond Street Hospital for Children NHS Foundation Trust v MX, FX and X ([2020] EWHC 1958 (Fam), [21]-[23] and [58]) has highlighted the importance of patient/family representation at clinical ethics committee meetings. The court viewed these meetings as making decisions about such treatment. We argue that this misunderstands the role of ethics support, with treatment decisions remaining with the clinical team and those providing their consent. The considered review by clinical ethics committees of the moral issues surrounding complex treatment decisions is not a matter of determining a single ethical course of action. In this article, we consider current legal understandings of clinical ethics committees, explore current concepts of ethics support and suggest how they may evolve, considering the various mechanisms of the inclusion of patients and their representatives in ethics meetings which is not standard in the UK.

Clinical Ethics Committees in Africa: lost in the shadow of RECs/IRBs?

BACKGROUND: Clinical Ethics Committees (CECs) are well established at healthcare institutions in resource-rich countries. However, there is limited information on established CECs in resource poor countries, especially in Africa. This study aimed to establish baseline data regarding existing formal CECs in Africa to raise awareness of and to encourage the establishment of CECs or Clinical Ethics Consultation Services (CESs) on the continent. METHODS: A descriptive study was undertaken using an online questionnaire via SunSurveys to survey healthcare professionals and bioethicists in Africa. Data were subjected to descriptive analysis and Fischer's exact test was applied to determine associations. Texts from the open-ended questions were thematically analysed. RESULTS: In total 109 participants from 37 African countries completed the survey in December 2019. A significant association was found between participants' bioethics qualification or training and involvement in clinical ethics (p = 0.005). All participants were familiar with Research Ethics Committees (RECs), and initially conflated RECs with CECs. When CECs were explained in detail, approximately 85.3% reported that they had no formal CECs in their institutions. The constraints to developing CECs included lack of training, limited resources, and lack of awareness of CECs. However, the majority of participants (81.7%) were interested in establishing CECs. Participants listed assistance required in establishing CECs including funding, resources, capacity building and collaboration with other known CECs. The results do not reflect CECs established since the onset of COVID-19 in Africa. CONCLUSIONS: This study provides a first look into CECs in Africa and found very few formal CECs on the continent indicating an urgent need for the establishment of CECs or CESs in Africa. While the majority of healthcare professionals and bioethicists are aware of ethical dilemmas in healthcare, the concept of formal CECs is foreign. This study served to raise awareness of CECs. Research ethics and RECs overshadow CECs in Africa because international funders from the global north support capacity development in research ethics and establish RECs to approve the research they fund in Africa. Raising awareness via educational opportunities, research and conferences about CECs and their role in improving the quality of health care in Africa is sorely needed.

Lessons learned from implementing a responsive quality assessment of clinical ethics support.

BACKGROUND: Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design has been implemented. CES practitioners themselves reflected upon the quality of ethics support within each other's health care organizations. This study presents a qualitative evaluation of this Responsive Quality Assessment (RQA) project. METHODS: CES practitioners' experiences with and perspectives on the RQA project were collected by means of ten semi-structured interviews. Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of the decisions. RESULTS: The main findings illustrate the relevance of the RQA with regard to fostering the quality of CES by connecting to context specific issues, such as gaining support from upper management and to solidify CES services within health care organizations. Based on their participation in the RQA, CES practitioners perceived a number of changes regarding CES in Dutch health care organizations after the RQA: acknowledgement of the relevance of CES for the quality of care; CES practices being more formalized; inspiration for developing new CES-related activities and more self-reflection on existing CES practices. CONCLUSIONS: The evaluation of the RQA shows that this method facilitates an open learning process by actively involving CES practitioners and their concrete practices. Lessons learned include that "servant leadership" and more intensive guidance of RQA participants may help to further enhance both the critical dimension and the learning process within RQA.

Hospital ethics reflection groups: a learning and development resource for clinical practice.

BACKGROUND: An ethics reflection group (ERG) is one of a number of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the significance of ERGs in psychiatric and general hospital departments in Denmark. METHODS: This is a qualitative action research study, including systematic text condensation of 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. Short written descriptions of the ethical challenges presented in the ERGs also informed the analysis of significance. RESULTS: A recurring ethical challenge for clinicians, in a total of 63 cases described and assessed in 3 ethical reflection groups, is to strike a balance between respect for patient autonomy, paternalistic responsibility, professional responsibilities and institutional values. Both in psychiatric and general hospital departments, the study participants report a positive impact of ERG, which can be divided into three categories: 1) Significance for patients, 2) Significance for clinicians, and 3) Significance for ward managers. In wards characterized by short-time patient admissions, the cases assessed were retrospective and the beneficiaries of improved dialogue mainly future patients rather than the patients discussed in the specific ethical challenge presented. In wards with longer admissions, the patients concerned also benefitted from the dialogue in the ERG. CONCLUSION: This study indicates a positive significance and impact of ERGs; constituting an interdisciplinary learning resource for clinicians, creating significance for themselves, the ward managers and the organization. By introducing specific examples, this study indicates that ERGs have significance for the patients discussed in the specific ethical challenge, but mostly indirectly through learning among clinicians and development of clinical practice. More research is needed to further investigate the impact of ERGs seen from the perspectives of patients and relatives.

Objectives and outcomes of clinical ethics services: a Delphi study.

OBJECTIVES: To explore the objectives and outcomes most appropriate for evaluating clinical ethics support services (CESs) in the USA. METHODS: A three-round e-Delphi was sent to two professional medical ethics listservs (Medical College of Wisconsin-Bioethics and American Society for Bioethics and Humanities) as well as 19 individual experts. The survey originally contained 15 objectives and 9 outcomes. In round 1, participants were asked to validate the content of these lists. In round 2, we had 17 objectives and 10 outcomes, and participants were asked to rank them for appropriateness in a top 10 list of objectives and a top 5 list of outcomes. RESULTS: Participants came to a high(at least 70%) level of agreement on seven objectives: mediate, educate, develop policy, improve the moral quality of a decision or action, counsel, create a moral space and manage moral distress. Participants came to a moderate (at least 51%) level of agreement on three objectives: empower, awareness of ethics and preventative ethics. Participants also came to a moderate (at least 51%) level of agreement on five outcomes: ethical justification, transformation of institution, improvement of quality of life, principled consensus and satisfaction with the expertise of a CES. CONCLUSION: This e-Delphi identified 10 objectives and 5 outcomes that are a good starting point for developing outcome measures to evaluate CESs in the USA, while reminding us of the diversity of perspectives still evident in the field.

Implementing ethics reflection groups in hospitals: an action research study evaluating barriers and promotors.

BACKGROUND: An ethics reflection group (ERG) is one of a range of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the implementation process of interdisciplinary ERGs in psychiatric and general hospital departments in Denmark. To our knowledge, this is the first study of ERG implementation to include both psychiatric and general hospital departments. METHODS: The implementation and evaluation strategies are inspired by action research, using a qualitative approach and systematic text condensation of 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. RESULTS: The implementation process was influenced by both structural factors and factors related to clinicians having different values, interests and experiences. Structural barriers and promotors in the process to implement ERG included the following sub-categories: Organizational factors, recruitment and training of ethics facilitators, the deliberation model, planning and recruitment of participants to the ERGs, the support of the ward managers and the project group. Barriers and promotors found among clinicians included the following sub-categories: Expectations and pre-understandings of ERGs, understandings of a physician's job, challenges experienced by ethics facilitators. At the end of the study, when it was decided that the ERGs should be continued, the implementation strategies were remodeled by the participants to meet new challenges. CONCLUSION: The study of ERG implementation identified important structural and professional barriers and promotors that are likely to be relevant to anyone wanting to implement ethics support services across various types of healthcare services.

Ética en la salud pública: tiempo de darle la importancia que merece / No disponible

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Implementation of Clinical Ethics Consultation in German Hospitals.

In order to build on the information that was obtained in the course of the first study, a follow-up survey was conducted first by phone and subsequently in a written form between August and October 2014. We contacted 1.858 hospitals in all of Germany for the follow-up survey by phone. In cases where a hospital had not participated in the first study, the willingness to participate in the follow-up survey was established in advance. The survey's dispatch was ensured in the case of acceptance. The same structured survey was used as a research tool. The data of the first study and the follow-up survey were merged and evaluated. 654 surveys (response rate 35.2 %) could be evaluated altogether. Our survey by phone revealed that 912 hospitals in all of Germany have at least one form of clinical ethics consultation available. The health care ethics committee is the most frequently implemented structure of clinical ethics consultation. The implementation of clinical ethics consultation is dependent on sponsorship and hospital size. Recommendations to deliver structures of clinical ethics consultations (ZEKO 2006, AEM 2010) have a smaller influence on the implementation compared to the certification by KTQ respectively proCum Cert. The rate of implementation in regard to the structures of clinical ethics consultation has steadily increased for years. The establishment of clinical ethics consultation in German hospitals should be further promoted. It would be desirable further to develop suitable juridical regulations in order to implement clinical ethics consultation as well as structural parameters.

An overview of trends in the regulation of clinical ethics committees: an opinion from the Italian National Bioethics Committee article / Una visión general de las tendencias en la regulación por los comités de ética clínica: una opinión del Comité Nacional Italiano de Bioética

In 2017, the Italian National Bioethics Committee (INBC) released an opinion paper titled "Clinical ethics committees". Said document advocates for the creation of "clinical bioethics committees" in every suitable setting and lays out a set of guidelines aimed at regulating such committees' functions. The recommendations deal primarily with the independence, requirements for counselling, structures, composition, tasks, placement, coordination, requisite competences, regulations. In the opinion's contents there are: a) the need to entrust counselling and training on ethical issues within clinical practice to different committees than those that deal with ethical assessments of scientific trials and experimentation; b) the laying out of all the various functions and related competencies required of the ethics committees' members; c) the necessity that all counselling practices be carried out by each committee as a whole, rather than by a single expert member; d) Committee's independence. The authors elaborate on each one of the above mentioned aspects and highlight the importance of INBC's recommendations in order to improve the quality standards of care delivered "to each patient's bed"

En el 2017, el Comité Nacional Italiano de Bioética (CNIB) publicó un artículo de opinión titulado "Comités de Ética Clínica". Dicho documento aboga por la creación de "comités clínicos de bioética" en cada entorno adecuado, y establece un conjunto de directrices destinadas a regular las funciones de tales comités. Las recomendaciones se refieren principalmente a la independencia, los requisitos para el asesoramiento, las estructuras, la composición, las tareas, la ubicación, la coordinación, las competencias requeridas, las regulaciones. En los contenidos de la opinión se plantean: a) la necesidad de confiar el asesoramiento y la capacitación en cuestiones éticas dentro de la práctica clínica a diferentes comités que aquellos que se ocupan de las evaluaciones éticas de los ensayos científicos y la experimentación; b) la presentación de las diversas funciones y competencias requeridas por los miembros de los comités de ética; c) la necesidad de que todas las prácticas de asesoramiento sean llevadas a cabo por cada comité como un todo, y no por un solo miembro experto; d) independencia del comité. Los autores detallan cada uno de los aspectos mencionados anteriormente y resaltan la importancia de las recomendaciones de CNIB para mejorar los estándares de calidad de la atención brindada "a la cabecera de la cama de cada paciente"

DTC genetic testing and the role of science museums in building ethical and legal awareness / Pruebas genéticas directas al consumidor y el papel de los museos de ciencias en la creación de conciencia ética y legal

By focusing institutions' responsibility to create citizens mindful of their rights and of the interests involved in genomic knowledge and its exploitation, science museums are proposed as agoras where spreading scientific knowledge together with legal information and education. An original tool to engage citizens and build awareness on innovations with high ethical and legal significance is presented

Al centrarse en la responsabilidad de las instituciones para crear ciudadanos conscientes de sus derechos y de los intereses involucrados en el conocimiento genómico y su explotación, se proponen museos de ciencia como ágoras donde se difunda el conocimiento científico junto con la información legal y la educación. Se presenta una herramienta original para involucrar a los ciudadanos y crear conciencia sobre las innovaciones con gran importancia ética y legal

An overview of trends in the regulation of clinical ethics committees: an opinion from the Italian National Bioethics Committee article.

In 2017, the Italian National Bioethics Committee (INBC) released an opinion paper titled ″Clinical ethics committees″. Said document advocates for the creation of ″clinical bioethics committees″ in every suitable setting and lays out a set of guidelines aimed at regulating such committees' functions. The recommendations deal primarily with the independence, requirements for counselling, structures, composition, tasks, placement, coordination, requisite competences, regulations. In the opinion's contents there are: a) the need to entrust counselling and training on ethical issues within clinical practice to different committees than those that deal with ethical assessments of scientific trials and experimentation; b) the laying out of all the various functions and related competencies required of the ethics committees' members; c) the necessity that all counselling practices be carried out by each committee as a whole, rather than by a single expert member; d) Committee's independence. The authors elaborate on each one of the above mentioned aspects and highlight the importance of INBC's recommendations in order to improve the quality standards of care delivered ″to each patient's bed″.

El internista como consultor de ética clínica: un antídoto contra "la barbarie delespecialismo" en la práctica hospitalaria / The internist as clinical ethics consultant: An antidote to "the barbarism of specialization" in hospital practice

El desarrollo de la ética clínica hospitalaria en España depende casi exclusivamente de los comités de ética asistencial. Estos han sido criticados por su falta de cercanía a la cabecera del paciente en los conflictos éticos cotidianos y por su escasa operatividad práctica, que se refleja en el escaso número de consultas que reciben. En el presente trabajo reflexionamos sobre la necesidad de modificar el modelo actual de atención en ética clínica para reactivarlo y llamar la atención sobre el papel primordial del internista como motor de dicho cambio. Para ello proponemos un modelo en que los comités de ética asistencial incorporen consultores de ética, mejor posicionados para la discusión de casos a la cabecera del enfermo. Seguidamente analizamos las características que dichos consultores deberían poseer

The development of hospital clinical ethics in Spain depends almost exclusively on the healthcare ethics committees, which have been criticized for a lack of proximity to the patient's bedside in day-to-day ethical conflicts and for their scarce practical operation, reflected in the low number of consultations they receive. In this study, we reflect on the need to change the current healthcare model in clinical ethics so as to reactivate it and call attention to the essential role of internists as the engine for this change. To this end, we propose a model in which the healthcare ethics committees incorporate ethics consultants, who are better positioned to discuss cases at the patient's bedside. We then analyse the characteristics that these consultants should have

El consultor de ética / The ethics consultant

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Empty Spaces.

"I'm Jewish, you know, and my mother said, 'Always trust the rabbis.'" I never heard Mr. Weisman's refrain from his own lips. I never heard him say any words all. By the time I met him he was in a vegetative state, a man on the precipice of invisibility-white hair, thin pale limbs, melting into sheets of the same color. When I think about Mr. Weisman, I see empty spaces-the absence of his voice, the too-large bed for his shrinking frame, the always-empty chair by his bedside, and most of all, the myriad gaps in his life story. He was what in hospitals is often called a "patient alone": someone who lacks decisional capacity and has no surrogate to make medical decisions for him. Mr. Weisman's aloneness prompted his primary team to consult our bioethics service in order to formulate goals of care for him, including the possibility of hospice care.