Hec Forum最新文献

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences.

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.

Moral distress reflects often recurrent problems within a healthcare environment that impact the quality and safety of patient care. Examples include inadequate staffing, lack of necessary resources, and poor interprofessional teamwork. Recognizing and acting on these issues demonstrates a collaborative and organizational commitment to improve. Moral distress consultation is a health system-wide intervention gaining momentum in the United States. Moral distress consultants assist healthcare providers in identifying and strategizing possible solutions to the patient, team, and systemic barriers behind moral distress. Moral distress consultants offer unique perspectives on the goals, successes, areas for improvement, and sustainability of moral distress consultation. Their ideas can help shape this intervention's continued growth and improvement. This qualitative descriptive study features 10 semi-structured interviews with moral distress consultants at two institutions with longstanding, active moral distress consultation services. Themes from consultant transcripts included consultant training, understanding the purpose of moral distress consultation, interfacing with leadership teams, defining success, and improving visibility and sustainability of the service. These findings describe the beginnings of a framework that organizations can use to either start or strengthen moral distress consultation services, as well as the first steps in developing an evaluation tool to monitor their utility and quality.

The Canadian approach to assisted dying, Medical Assistance in Dying (MAiD), as of early 2024, is assessed for its ability to protect patients from criminal healthcare serial killing (HSK) to evaluate the strength of its safeguards. MAiD occurs through euthanasia or self-administered assisted suicide (EAS) and is legal or considered in many countries and jurisdictions. Clinicians involved in HSK typically target patients with the same clinical features as MAiD-eligible patients. They may draw on similar rationales, e.g., to end perceived patient suffering and provide pleasure for the clinician. HSK can remain undetected or unconfirmed for considerable periods owing to a lack of staff background checks, poor surveillance and oversight, and a failure by authorities to act on concerns from colleagues, patients, or witnesses. The Canadian MAiD system, effectively euthanasia-based, has similar features with added opportunities for killing afforded by clinicians' exemption from criminal culpability for homicide and assisted suicide offences amid broad patient eligibility criteria. An assessment of the Canadian model offers insights for enhancing safeguards and detecting abuses in there and other jurisdictions with or considering legal EAS. Short of an unlikely recriminalization of EAS, better clinical safeguarding measures, standards, vetting and training of those involved in MAiD, and a radical restructuring of its oversight and delivery can help mitigate the possibility of abuses in a system mandated to accommodate homicidal clinicians.

Bioethics conjures images of dramatic healthcare challenges, yet everyday clinical ethics issues unfold regularly. Without sufficient ethical awareness and a relevant working skillset, clinicians can feel ill-equipped to respond to the ethical dimensions of everyday care. Bioethicists were interviewed to identify the essential skills associated with everyday clinical ethics and to identify educational case scenarios to illustrate everyday clinical ethics. Individual, semi-structured interviews were conducted with a convenience sample of bioethicists. Bioethicists were asked: (1) What are the essential skills required for everyday clinical ethics? And (2) What are potential educational case scenarios to illustrate and teach everyday clinical ethics? Participant interviews were analyzed using qualitative content analysis. Twenty-five (25) bioethicists completed interviews (64% female; mean 14.76 years bioethics experience; 80% white). Five categories of general skills and three categories of ethics-specific skills essential for everyday clinical ethics were identified. General skills included: (1) Awareness of Core Values and Self-Reflective Capacity; (2) Perspective-Taking and Empathic Presence; (3) Communication and Relational Skills; (4) Cultural Humility and Respect; and (5) Organizational Understanding and Know-How. Ethics-specific skills included: (1) Ethical Awareness; (2) Ethical Knowledge and Literacy; and (3) Ethical Analysis and Interaction. Collectively, these skills comprise a Toolbox of Everyday Clinical Ethics Skills. Educational case scenarios were identified to promote everyday ethics. Bioethicists identified skills essential to everyday clinical ethics. Educational case scenarios were identified for the purpose of promoting proficiency in this domain. Future research could explore the impact of integrating educational case scenarios on clinicians' ethical competencies.

Bioethical dilemmas can emerge in research and clinical settings, from end-of-life decision-making to experimental therapies. The COVID-19 pandemic raised serious ethical challenges for healthcare organizations, highlighting the need to conduct needs assessments of the bioethics infrastructures of healthcare organizations. Clinical ethics committees (CECs) also create equitable policies, train staff on ethics issues, and play a consultative role in resolving the difficulty of complex individual cases. The main objective of this project was to conduct a needs assessment of the bioethics infrastructure within a comprehensive hospital system. A cross-sectional anonymous online survey, including quantitative and qualitative formatted questions. The survey was sent to five key leaders from the organization's hospitals. Survey questions focused on the composition, structure, function, and effectiveness of their facilities' bioethics infrastructure and ethics-related training and resources. Positive findings included that most facilities have active CECs with multidisciplinary membership; CECs address critical issues and encourage team members to express clinical ethics concerns. Areas of concern included uncertainty about how CECs function and the process for resolving clinical ethics dilemmas. Most reported no formal orientation process for CEC members, and many said there was no ongoing ethics education process. The authors conclude that if CECs are a critical institutional resource where the practice of medicine and mission intersect, having well-functioning ethics committees with trained and oriented members demonstrates an essential commitment to the mission. The survey revealed that more needs to be done to bolster the bioethics infrastructure of this institution.

Settling the debate over conscientious refusal (CR) in liberal democracies requires us to develop a conception of the healthcare provider's moral role. Because CR claims and resulting policy changes take place in specific sociopolitical contexts with unique histories and diverse polities, the method we use for deriving the healthcare norms should itself be a democratic, context-dependent inquiry. To this end, I begin by describing some prerequisites-which I call publicity conditions-for any democratic account of healthcare norms that conflict or jibe with CR. Next, drawing on Ronald Dworkin's jurisprudence and Tom Beauchamp & James Childress's approach to bioethical reasoning, I briefly introduce one method for generating healthcare norms that is faithful to the publicity conditions and has potential to constructively, and democratically, derive important boundaries for CR. Finally, I argue that many critics of CR fail to similarly ground their accounts of healthcare norms in healthcare professionals' sociopolitical contexts, often relying instead on their own interpretation of a generally stateable healthcare norm. This leads to their misconstruing both the value judgments on which their own approaches rest and the public, political values that are often invoked in favor of CR.

Civility is an essential feature of health care, as it is in so many other areas of human interaction. The article examines the meaning of civility, reviews its origins, and provides reasons for its moral significance in health care. It describes common types of uncivil behavior by health care professionals, patients, and visitors in hospitals and other health care settings, and it suggests strategies to prevent and respond to uncivil behavior, including institutional codes of conduct and disciplinary procedures. The article concludes that uncivil behavior toward health care professionals, patients, and others subverts the moral goals of health care and is therefore unacceptable. Civility is a basic professional duty that health care professionals should embrace, model, and teach.

Although medical confidentiality is widely recognized as an essential principle in the therapeutic relationship, its systematic and coherent practice has been an ethically challenging duty upon healthcare providers due to various concerns of clinical, moral, religious, social, ethical and legal natures. Medical confidentiality can be breached to protect the patient and/or others if maintaining confidentiality causes serious harm. Healthcare professionals may encounter complicated situations whereby the divulgence of a patient's confidential information may pose a threat to one party whereas the concealment of such information may cause harm to another. After deliberating on the Islamic concept of harm (ḍarar), this paper focuses on the dual duty and conflicts of interests faced by healthcare professionals in the practice of medical confidentiality. Referring to serious infectious diseases with a special mention of AIDS, this study also provides discourse on how healthcare professionals deal with difficult scenarios of conflicts of interests and ethical dilemmas.

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.