Francimar Alves de Oliveira Neto, Aldeir da Silva Cavalcante, Fernando Gonçalves Coêlho
et al.
Resumo A tomada de decisão em cuidados paliativos é desafiadora, especialmente ao se optar por medidas invasivas em detrimento do conforto. Este estudo realizou uma revisão integrativa nas bases Scopus e Web of Science, utilizando os descritores “decision making” e “physician or doctor or medical” e “palliative care”. Foram incluídos estudos quantitativos e qualitativos dos últimos cinco anos sobre decisões relacionadas a procedimentos invasivos em pacientes paliativos, dos quais, após a triagem, foram analisados cinco. Observou-se predomínio de decisões baseadas em uma visão tecnicista voltada para a manutenção da vida. Contudo, experiência e treinamento em cuidados paliativos influenciam escolhas mais centradas nos valores do paciente e da família, respeitando sua vontade, promovendo conforto e reduzindo o sofrimento. A literatura sobre o tema ainda é escassa, destacando a importância de ampliar a discussão e incentivar abordagens focadas no bem-estar do paciente.
Based on the interdisciplinary perspective of cognitive linguistics and Traditional Chinese Medicine (TCM), this paper analyzes 1407 cases of acupuncture points terms in the ancient medical books such as Huangdi Neijing and Classic on Medical Problems by means of corpus research. It focuses on the specific representation of the integration between acupuncture points concept and embodied experience, and then explores the interactive relationship between modern embodied philosophy and TCM. First, at the initial stage, primary-level concept of acupoints domain is recognized through the transportation experience in daily life, and then projected to the domain of TCM to develop the unique meaning of acupuncture points. Second, the specific terms of acupoints reflect four cognitive perspectives within the TCM conceptual domain, among which "highlighting viscera, meridians or body parts" are the main. Third, the terms of acupuncture points contain nine categories and 22 types of conventional metaphors, among which topographical metaphors are the most prevalent. The conceptualization of acupuncture points also reflects cognitive patterns shaped by water metaphors underlying their associations with other concepts. Additionally, 14.55% of acupuncture points terms feature integrated metaphorical structures.
Younes Aissaoui, Fadwa Charif, Bassam Bencharfa
et al.
Abstract Background End-of-life (EOL) care practices, particularly the withholding and withdrawing (W/W) of life-sustaining treatments (LSTs), remain underexplored in North Africa. This study examined factors that influence EOL practices in Morocco. Methods A nationwide online survey was conducted over one month (from July to August 2023) among Moroccan intensivists, assessing their perspectives on W/W LSTs, decision-making processes, and influencing factors, including ethical, cultural, and religious considerations. Univariable analyses were performed to screen for potential associations, followed by multivariable logistic regression to identify factors independently associated with W/W decisions. Results Of 351 invited intensivists, 151 completed the survey, yielding a 41% response rate. The mean age of respondents was 47 ± 9 years, and 84% were male. Most interpreted EOL care as providing palliative care (74%) or ensuring a dignified death (59%), while only 23% explicitly associated it with the cessation of life-sustaining treatment. Nearly 40% reported never having made withholding or withdrawing (W/W) decisions, and 88% made fewer than one such decision per week. While 59% considered withholding LSTs ethically acceptable, only 5% supported both withholding and withdrawing. The most frequently cited barriers were the absence of a legal framework (75%), sociocultural constraints (44%), and discomfort discussing EOL issues with families (58%). Patient wishes were considered in fewer than half of cases, whereas family preferences predominated in 66%. Documentation of W/W decisions was uncommon (27%), and formal institutional protocols were largely absent (94.5%). In multivariable analysis, practicing in a public hospital (odds ratio [OR] = 3.16, p = 0.005) and believing that Islam permits W/W decisions (OR = 3.49, p = 0.006) were independently associated with a higher likelihood of making such decisions. Conclusion Moroccan intensivists face major ethical and practical challenges in EOL care, including legal ambiguity, lack of protocols, limited patient involvement, and difficulty communicating with families. The findings highlight the urgent need for legislative reforms, standardized protocols, and improved education to support ethical, culturally sensitive, and patient-centred EOL practices.
While medical artificial intelligence (AI) enhances the efficiency and accuracy of diagnosis and treatment, it also brings forth the "black-box" problem that is difficult to interpret. The explainability of medical AI, or "explainable medical AI", has become a focal topic in academia. Explainability is an ethical requirement for implementing responsible applications of artificial intelligence. On the premise of respecting patient interests and autonomy, multiple stakeholders should collaboratively ensure that "black-box" AI models benefit medical practice within controllable boundaries. To this end, the authors propose the concept of "ethical acceptability", review academic debates on the explainability of medical AI, analyze the core components of ethical acceptability, and construct a dynamic model to identify acceptance challenges across different contexts. The authors further propose baseline principles of minimum explanation obligation, parity of risk and responsibility, and a negotiated co-construction mechanism. These principles aim to support the development of a context-based hybrid interpretability framework.
Resumo Esta revisão bibliográfica busca abordar os aspectos éticos relacionados à elaboração de termos de assentimento para pesquisas envolvendo crianças e adolescentes, por meio de abordagem qualitativa. Discute-se, ainda, a lacuna existente nas resoluções brasileiras em relação a sua composição. Por fim, são sugeridas algumas das informações mais relevantes para a elaboração do documento.
Susanne Tippmann, Janine Schäfer, Christine Arnold
et al.
Background and objectiveObtaining informed consent in neonatal emergency research is challenging. The aim of this study was to assess parental perceptions of informed consent following participation in a clinical trial in neonatal emergency care.MethodsThis was a supplementary analysis of a randomised controlled trial comparing video and direct laryngoscopy for neonatal endotracheal intubation in the delivery room and neonatal intensive care unit. After obtaining informed consent for the clinical trial, parents were asked to answer a series of self-administered questions about their perceptions of clinical trial participation and the consent process. Informed consent had been given either before birth, after birth but before inclusion in the trial, or after inclusion in the trial.ResultsWe received responses from 33 mothers and 27 fathers (n = 60) of the 63 preterm and term infants who participated in the study. Fifty-three (89.8%, n = 59) parents agreed that infants should participate in clinical trials, and 51 (85%, n = 60) parents agreed that parents should be asked for informed consent. Fifty-three (89.8%, n = 59) parents felt that their infant's participation in this particular trial would be beneficial. Fifty-two (86.7%, n = 60) parents felt that the informed consent process was satisfactory. One parent (100%, n = 1) approached before birth, 23 parents (82.1%, n = 28) approached after birth but before enrolment and 26 (83.9%, n = 31) parents approached after enrolment were satisfied with the timing of the consent process. Eight (13.3%, n = 60) parents felt some pressure to provide informed consent. Of these, two (25%) were approached before enrolment and six (75%) were approached after enrolment.ConclusionParents valued their infant's participation in an emergency neonatal clinical trial and considered it important to be asked for consent. In this study, it seemed less important whether consent was obtained before or after the intervention. Future studies may need to investigate which form of consent is most acceptable to parents for the individual study in question.
Abstract Within bioethics, Kant’s conception of autonomy is often portrayed as excessively rationalistic, abstract, and individualistic, and, therefore, far removed from the reality of patients’ needs. Drawing on recent contributions in Kantian philosophy, we argue that specific features of Kantian autonomy remain relevant for medical ethics and for patient experience. We use contemporary end-of-life illness narratives—a resource that has not been analyzed with respect to autonomy—and show how they illustrate important Kantian themes, namely, the duty to know oneself, the interest in elaborating universalizable principles, and the emphasis on ideals as points of orientation that guide behavior without ever being fully realized. As Kant does, the patient-authors discussed here perceive the end of life as a moment to reflect on the constitutive principles which have governed that life, thereby offering a privileged moment to pursue self-knowledge. We argue that bioethical conceptions of autonomy stand to gain if they revise their conception of Kantian moral philosophy as too formal, abstract, and detached from emotions and personal relationships to be helpfully applied.
Andrew Peterson* and Dominic Sisti Institute for Philosophy and Public Policy and Department of Philosophy, George Mason University, Fairfax, Virginia 22030, USA Penn Program on Precision Medicine for the Brain, University of Pennsylvania Memory Center, Philadelphia, Pennsylvania 19104, USA Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA *Corresponding author. Email: apeter31@gmu.edu
Petr Talantov, Ravil Niyazov, Galina Viryasova
et al.
Abstract Background In modern Russia, any clinical investigation of a pharmaceutical for use in humans is subject to prior evaluation and approval by the Ministry of Health and its Central Ethics Committee. Despite this, some researchers and trial sponsors fail to comply, this is particularly true in case of the studies initiated by domestic sponsors or sponsor-investigators and published in Russian language medical journals. This exploratory research aims to discover whether it is a sporadic non-compliance with regulations or a common practice. Methods We searched the Russian language database eLIBRARY for the phrase ‘results of a randomised trial’. We selected publications reporting clinical trials and conducted in Russia. For each of the selected studies, we searched the state register of the approved clinical trials. We assessed whether (1) the investigational medicinal product was approved for marketing in Russia; (2) the therapeutic indications, posology, and administration method in the clinical trial were consistent with the approved labelling; (3) the issue of the journal included an advertisement of the medicinal product in question; and (4) the full description of the methodology corroborated that the clinical trial was randomised, as was stated in the title or abstract. Results Of the 26 selected articles, 22 reported the results of unauthorised clinical trials. Three of those trials were conducted in children. Twenty-one studies reported on data from unauthorised trials for investigational products approved for marketing in Russia. However, in nine cases, the therapeutic indications, posology, or administration method did not match the conditions indicated in the labelling. Moreover, in one case, the unauthorised trial included a drug therapy intervention where the active substance was not approved for use in any medicinal product marketed in Russia. In 14 of the 26 articles, the issue of the journal or the article itself contained an advertisement for the same medicinal product or, in one case, its manufacturer. All publications accompanied by advertisements claimed that the medicinal product in question was efficacious. Conclusions A substantial fraction of the clinical trials initiated by domestic sponsors and reported in Russian medical journals failed to obtain the mandatory prior evaluation and approval from the regulator. This can affect the rights and well-being of the study participants and the scientific validity of the studies.
Photo by K. Mitch Hodge on Unsplash
The high COVID-19 death rate among elderly individuals living in nursing homes has been attributed to overworked staff, poor infection control, limited resources, and the transfer of infected individuals into long-term care facilities. While these circumstances have certainly contributed to the problem, we should view them as symptoms—rather than root causes—of a deeper, more significant ethical problem: our tendency to shun responsibility for the weakest and most vulnerable individuals among us.
As a former nursing home and hospice aide, I acknowledge the intensely unnerving nature of human suffering, especially when it afflicts the elderly and dying. Spending hours caring for patients who are unable to move their limbs, control their bowel functions, or breathe without the assistance of morphine is difficult for even the most compassionate and generous caregivers.
Frailty and dependency are challenging phenomena to encounter, and thus it is unsurprising that we treat the process of aging and eventually dying as an awkward, shameful appendix to the busy, productive, and efficient years which constitute our “real lives.” Though any of us might be diagnosed with incurable, stage four cancer tomorrow, or suddenly become the victim of a severe car accident, we collectively prefer to ignore our mortality. When it finally and unavoidably stares us in the face, we pray it passes as rapidly, painlessly, and privately as possible to minimize its inconveniences and undignified details.
Avoiding death is easier than facing it head on; outsourcing care is more comfortable than providing it within the context of our own families and communities; and, it is more convenient to offer cheap, expedient methods of care rather than work towards high-quality compassion. Our hesitance to encounter intense suffering and the raw realities of death have caused us to place a low priority on caring for our elderly population. When I worked as a nursing assistant long before the pandemic, this was painfully obvious to me: I was offered more overtime than I could possibly accept, worked with staff poorly trained in infection control, accepted the frequent staff turnover as normal, and often left completely exhausted. Some nights, after an especially intense shift, I sat in the parking lot and cried, both for my lonely, frustrated patients, and for my own inability to remedy suffering which could have been avoided.
It is true that the elderly often require lower levels of care, yet it is an illusion to believe this justifies providing low-quality care. A nursing home is no ICU: bathing and dressing replace intubations and intensive monitoring. End-of-life care is composed of a thousand basic tasks which demand relatively minimal amounts of medical skill. Nevertheless, these patients are no less worthy of care than someone undergoing more intensive treatment, nor is their multifaceted humanity as physical, emotional, and spiritual beings any less complex. If anything, addressing the innumerable dimensions of human wellness is more difficult and more important as death approaches than at any other point in the human lifespan.
Old age inevitably brings a unique set of challenges and dying is always difficult. How our society approaches the responsibility of caring for the elderly and dying, however, reveals our most fundamental beliefs about what it means to care for the vulnerable. Either we will continue to perceive this obligation as nothing more than an endless string of mundane tasks which fall outside the serious consideration of public health policy, or we will view it as a profound opportunity to accompany our fellow human beings during some of the most important days of their lives. The consequences of our choice are not merely death or life. Though we certainly must avoid causing the premature death of others, the primary goal is not indefinite life expansion. Instead, what is ultimately at stake is whether we will craft a society which views everyone as equal members who are worthy of dignified support regardless of age, ability, or any other characteristic.
The COVID-19 tragedy sweeping through nursing homes not only requires the prompt action of public health officials, but also demands that we as a society open our eyes to a hidden, underlying tragedy: these inequities that plague our approach to caring for the vulnerable lead us to treat the elderly with mediocrity and neglect rather than integrity and good medicine. The process of growing old and facing death does not need to be a depersonalized, undignified experience. Instead, it can be full of joy, community, and deep bonds of friendship, though this manner of caring for our elders will be difficult at times. This is to be expected—building a just, compassionate, and authentic human society is never an easy task. It will challenge us to not only wear masks and stay home, but also to undertake the difficult tasks of re-evaluating our most fundamental beliefs about what it means to care for those who need us the most and remedying our failure to do so.
Recent work within such disparate research areas as the epistemology of perception, theories of well-being, animal and medical ethics, the philosophy of consciousness, and theories of understanding in philosophy of science and epistemology has featured disconnected discussions of what is arguably a single underlying question: What is the value of consciousness? The purpose of this paper is to review some of this work and place it within a unified theoretical framework that makes contributions (and contributors) from these disparate areas more visible to each other.
Henriette Bruun, Reidar Pedersen, Elsebeth Stenager
et al.
Abstract 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.
El presente artículo es el resultado de un ejercicio de reflexión desde la bioética social de los conflictos de género y la necesidad de vincular las masculinidades tanto en el campo de estudios de género como en los movimientos sociales y las políticas públicas. Se presenta una genealogía de algunas fuerzas sociales que han dinamizado los estudios de género a partir de comprender la violencia basada en el género, la salud pública, la alimentación y la degradación ambiental, en clave diferencial y de bioproblemas. Desde esta perspectiva se plantean algunos retos que enfrenta la sociedad al vincular estas comprensiones y estrategias de cambio, si de construir un horizonte de accionar político se trata. Desde las políticas públicas, la sociedad y la academia, es necesario continuar un trabajo frente a los factores estructurales que hacen que permanezcan las violencias contra las mujeres, la legitimación de violencia entre hombres y la vinculación a grupos armados, así como la promoción del ejercicio de las paternidades y las éticas del cuidado y la incidencia de estas en la política y la economía, como puntos del debate necesario para la construcción de sociedades más igualitarias.
Edgar Morin’s thought provides us with some clues on understanding the relation between bioethics and ecology. The first one is ethics of life. The second is science of ecosystems –living units. Basically, both have life as their object, but from different perspectives. Edgar Morin is able to relate them thanks to his complex thought, which shows the necessity of departing from systemic thinking. This study thereby presents some of the conceptual difficulties that appear when examining the relationship between these two sciences: the question of anthropocentrism.
Medical philosophy. Medical ethics, Business ethics