Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study using in-depth (...) face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future. (shrink)

Intensity profiles of emotional experience over time have been found to differ primarily in explosiveness and accumulation. However, the determinants of these temporal features remain poorly understood. In two studies, we examined whether emotion regulation strategies are predictive of the degree of explosiveness and accumulation of negative emotional episodes. Participants were asked to draw profiles reflecting changes in the intensity of emotions elicited either by negative social feedback in the lab or by negative events in daily life. In addition, trait, (...) and state usage of a set of emotion regulation strategies was assessed. Multilevel analyses revealed that trait rumination was positively associated with emotion accumulation. State rumination was also positively associated with emotion accumulation and, to a lesser extent, with emotion explosiveness. These results provide support for emotion regulation theories, which hypothesise that rumination is a central mechanism underlying the maintenance of negative emotions. (shrink)

Notwithstanding fears of overly permissive approaches and related pleas to refuse euthanasia for psychological suffering, some Belgian hospitals have declared that such requests could be admissible. However, some of these hospitals have decided that such requests have to be managed and carried out outside their walls. Ghent University Hospital has developed a written policy regarding requests for euthanasia for psychological suffering coming from patients from outside the hospital. The protocol stipulates several due care criteria that go beyond the requirements of (...) the Belgian Euthanasia Law. For instance, the legally required first and second consulted physicians should all be psychiatrists and be affiliated with a psychiatry department of a Flemish university hospital. Moreover, euthanasia for psychological suffering can only be performed if the advices of these consulted physicians are positive. Importantly, preliminary reflection by the multidisciplinary Hospital Ethics Committee was introduced to discuss every request for euthanasia for psychological suffering coming from outside the hospital. In this way, the protocol supports psychiatrists faced with the complexities of assessing such requests, improves the quality of euthanasia practice by ensuring transparency and uniformity, and offers patients specialised support and guidance during their euthanasia procedure. Nevertheless, some concerns still remain. (shrink)

In this article, an ethical analysis of an educational programme on renal replacement therapy options for patients and their social network is presented. The two main spearheads of this approach are: (1) offering an educational programme on all renal replacement therapy options ahead of treatment requirement and (2) a home-based approach involving the family and friends of the patient. Arguments are offered for the ethical justification of this approach by considering the viewpoint of the various stakeholders involved. Finally, reflecting on (...) these ethical considerations, essential conditions for carrying out such a programme are outlined. The goal is to develop an ethically justified and responsible educational programme. (shrink)

Rapid developments in Artificial Intelligence are leading to an increasing human reliance on machine decision making. Even in collaborative efforts with Decision Support Systems (DSSs), where a human expert is expected to make the final decisions, it can be hard to keep the expert actively involved throughout the decision process. DSSs suggest their own solutions and thus invite passive decision making. To keep humans actively ‘on’ the decision-making loop and counter overreliance on machines, we propose a ‘reflection machine’ (RM). This (...) system asks users questions about their decision strategy and thereby prompts them to evaluate their own decisions critically. We discuss what forms RMs can take and present a proof-of-concept implementation of a RM that can produce feedback on users’ decisions in the medical and law domains. We show that the prototype requires very little domain knowledge to create reasonably intelligent critiquing questions. With this prototype, we demonstrate the technical feasibility to develop RMs and hope to pave the way for future research into their effectiveness and value. (shrink)

Instruction in peer assessment of complex task performance may cause high cognitive load, impairing learning. A stepwise instructional strategy aimed at reducing cognitive load was investigated by comparing it with a combined instructional strategy in an experiment with 128 secondary school students (mean age 14.0?years; 45.2% male) with the between-subjects factor instruction (stepwise, combined). In the stepwise condition, study tasks in Phase 1 were domain-specific and study tasks in Phase 2 had both domain-specific and peer assessment components. In the combined (...) condition, these two components were present in all tasks in both phases. Final performance (i.e. speed and accuracy in domain-specific skills and peer assessment skills) showed no significant differences, but performance improved more from Phase 1 to Phase 2 in the stepwise condition than in the combined condition. The results suggest that, with complex study tasks, it might be beneficial to teach domain-specific skills before peer assessment skills. (shrink)

Purpose – To review and discuss Luciano Floridi’s 2019 book The Logic of Information: A Theory of Philosophy as Conceptual Design, the latest instalment in his philosophy of information (PI) tetralogy, particularly with respect to its implications for library and information studies (LIS). Design/methodology/approach – Nine scholars with research interests in philosophy and LIS read and responded to the book, raising critical and heuristic questions in the spirit of scholarly dialogue. Floridi responded to these questions. Findings – Floridi’s PI, including (...) this latest publication, is of interest to LIS scholars, and much insight can be gained by exploring this connection. It seems also that LIS has the potential to contribute to PI’s further development in some respects. Research implications – Floridi’s PI work is technical philosophy for which many LIS scholars do not have the training or patience to engage with, yet doing so is rewarding. This suggests a role for translational work between philosophy and LIS. Originality/value – The book symposium format, not yet seen in LIS, provides forum for sustained, multifaceted and generative dialogue around ideas. (shrink)

BackgroundThe COVID-19 pandemic has created ethical challenges for intensive care unit (ICU) professionals, potentially causing moral distress. This study explored the levels and causes of moral distress and the ethical climate in Dutch ICUs during COVID-19.MethodsAn extended version of the Measurement of Moral Distress for Healthcare Professionals (MMD-HP) and Ethical Decision Making Climate Questionnaire (EDMCQ) were online distributed among all 84 ICUs. Moral distress scores in nurses and intensivists were compared with the historical control group one year before COVID-19. ResultsThree (...) hundred forty-five nurses (70.7%), 40 intensivists (8.2%), and 103 supporting staff (21.1%) completed the survey. Moral distress levels were higher for nurses than supporting staff. Moral distress levels in intensivists did not differ significantly from those of nurses and supporting staff. “Inadequate emotional support for patients and their families” was the highest-ranked cause of moral distress for all groups of professionals. Of all factors, all professions rated the ethical climate most positively regarding the culture of mutual respect, ethical awareness and support. “Culture of not avoiding end-of-life-decisions” and “Self-reflective and empowering leadership” received the lowest mean scores. Moral distress scores during COVID-19 were significantly lower for ICU nurses (p < 0.001) and intensivists (p < 0.05) compared to one year prior.ConclusionLevels and causes of moral distress vary between ICU professionals and differ from the historical control group. Targeted interventions that address moral distress during a crisis are desirable to improve the mental health and retention of ICU professionals and the quality of patient care. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Precision livestock farming (PLF) is the management of livestock using the principles and technology of process engineering. Key to PLF is the dense monitoring of variegated parameters, including animal growth, output of produce (e.g. milk, eggs), diseases, animal behaviour, and the physical environment (e.g. thermal micro-environment, ammonia emissions). While its proponents consider PLF a win-win strategy that combines production efficiency with sustainability goals and animal welfare, critics emphasise, inter alia, the potential interruption of human-animal relationships. This paper discusses the notion (...) that the objectification of animals by PLF influences the developmental pathways of conventional industrial farming. We conduct a conceptual analysis of objectification by comparing discussions in feminist ethics and animal ethics. We find that in animal ethics, objectification includes deontological arguments regarding instrumentalisation, de-animalisation, alienation, commodification and quantification of animals. The focus on socio-political context and relationality connects these debates to central ideas in care ethics. We adopt a care ethics perspective to assess the implications of the objectification of animals in livestock farming. The basic claim is that sensory knowledge symbolised by the farmers’ unity of hand, head and heart would make it harder to objectify animals than abstract and instrumental reasoning where the pursuit of knowledge is intertwined with the pursuit of control, as in mainstream PLF. Despite of what can be considered as a good caring relationship between farmers and animals that is mediated by PLF, people involved in conventional industrial farming still seem to become further detached from farmers and animals, because the PLF system itself is objectifying. PLF redefines the notion of care, in terms of data transparency, standardisation of methods for analysis, real-time collection and processing of data, remote control, and the use of digital platforms. This creates new expectations and requires a redistribution of responsibilities within a wider scope of relations in the value chain. (shrink)

This study aims to examine the development of diversity and inclusion (D&I) literature and identify its prominent themes and blind spots. The research was conducted using bibliometric analysis on the Web of Science database and included 2510 publications. Results showed that the development of D&I literature had increased exponentially since the 1960s, mainly due to different political and societal events. The geographic development showed that research was primarily conducted in developed countries where quotas and other legislation are implemented. The thematic (...) development revealed a stable but narrow focus on diversity management, board diversity, and team diversity, with little attention to inclusion. The keyword analysis strongly emphasized surface-level diversity, such as gender, race, and cultural diversity, while deep-level diversity received less attention. This study concludes that previous D&I literature has mainly focused on the financial effects of D&I and neglected other elements, such as the effects on social performance, its ethical implications, and the relationship between diversity and inclusion. The study recommends future research to expand the interpretation of diversity, examine the relationship between diversity and inclusion, and explore the effects of diversity on non-financial outcomes such as social performance and ethics. This study provides a valuable contribution to the field of business ethics by highlighting the blind spots in D&I literature and encouraging future research to consider the ethical implications of diversity in the workplace. (shrink)

The development of gene expression profiling and next-generation sequencing technologies have steered oncogenomics to the forefront of precision medicine. This created a need for harmonious cooperation between clinicians and researchers to increase access to precision oncology, despite multiple implementation challenges being encountered. The aim is to apply personalised treatment strategies early in cancer management, targeting tumour subtypes and actionable gene variants within the individual’s broader clinical risk profile and wellbeing. A knowledge-generating database linked to the South African Medical Research Council’s (...) Genomic Centre has been created for the application of personalised medicine, using an integrated service and research approach. Insights gained from patient experiences related to tumour heterogeneity, access to targeted therapies and incidental findings of pathogenic germline variants in tumour DNA, provided practice-changing evidence for the implementation of a cost-minimisation pathology-supported genetic testing strategy. Integrating clinical care with genomic research through data sharing advances personalised medicine and maximises precision oncology benefits. (shrink)

Recent advances in wireless data transmission technology have the potential to revolutionize clinical neuroscience. Today sensing-capable electrical stimulators, known as “bidirectional devices”, are used to acquire chronic brain activity from humans in natural environments. However, with wireless transmission come potential failures in data transmission, and not all available devices correctly account for missing data or provide precise timing for when data losses occur. Our inability to precisely reconstruct time-domain neural signals makes it difficult to apply subsequent neural signal processing techniques (...) and analyses. Here, our goal was to accurately reconstruct time-domain neural signals impacted by data loss during wireless transmission. Towards this end, we developed a method termed Periodic Estimation of Lost Packets. PELP leverages the highly periodic nature of stimulation artifacts to precisely determine when data losses occur. Using simulated stimulation waveforms added to human EEG data, we show that PELP is robust to a range of stimulation waveforms and noise characteristics. Then, we applied PELP to local field potential recordings collected using an implantable, bidirectional DBS platform operating at various telemetry bandwidths. By effectively accounting for the timing of missing data, PELP enables the analysis of neural time series data collected via wireless transmission—a prerequisite for better understanding the brain-behavior relationships underlying neurological and psychiatric disorders. (shrink)

A longitudinal, epidemiological study was carried out in a rural area of Kenya with a population of about 28,000 between 1974 and 1980. Population registration during this time showed that population growth was very high between 1974 and 1978 (4·4% per year) and much lower in 1979 and 1980 (1·1%). Natural increase was nearly as high as in Kenya as a whole (3·7%) in this period. Fertility was somewhat lower than in all Kenya (the crude birth rate was 46 per (...) 1000) while mortality was substantially lower (7 per 1000). Evidence is presented supporting the argument that these low mortality rates are genuine. Levels of temporary and permanent migration are high and probably characteristic for many parts of Kenya. The change in population growth in 1979 and 1980 is probably due to changes in economic conditions leading in particular to less in-migration and to more out-migration. (shrink)

In recent years, functional connectivity in the developmental science received increasing attention. Although it has been reported that the anatomical connectivity in the preterm brain develops dramatically during the last months of pregnancy, little is known about how functional and effective connectivity change with maturation. The present study investigated how effective connectivity in premature infants evolves. To assess it, we use EEG measurements and graph-theory methodologies. We recorded data from 25 preterm babies, who underwent long-EEG monitoring at least twice during (...) their stay in the NICU. The recordings took place from 27 weeks postmenstrual age until 42 weeks PMA. Results showed that the EEG-connectivity, assessed using graph-theory indices, moved from a small-world network to a random one, since the clustering coefficient increases and the path length decreases. This shift can be due to the development of the thalamocortical connections and long-range cortical connections. Based on the network indices, we developed different age-prediction models. The best result showed that it is possible to predict the age of the infant with a root mean-squared error equal to 2.11 weeks. These results are similar to the ones reported in the literature for age prediction in preterm babies. (shrink)

Port-wine birthmarks (PWBs) are caused by somatic, mosaic mutations in the G protein guanine nucleotide binding protein alpha subunit q (GNAQ) and are characterized by the formation of dilated, dysfunctional blood vessels in the dermis, eyes, and/or brain. Cutaneous PWBs can be treated by current dermatologic therapy, like laser intervention, to lighten the lesions and diminish nodules that occur in the lesion. Involvement of the eyes and/or brain can result in serious complications and this variation is termed Sturge-Weber syndrome (SWS). (...) Some of the biggest hurdles preventing development of new therapeutics are unanswered questions regarding disease biology and lack of models for drug screening. In this review, we discuss the current understanding of GNAQ signaling, the standard of care for patients, overlap with other GNAQ-associated or phenotypically similar diseases, as well as deficiencies in current in vivo and in vitro vascular malformation models. (shrink)

Introduction: The Dutch Euthanasia Act states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these (...) criteria in medical practice.Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians . Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act.Results: Of all physicians who had received a request for euthanasia or assisted suicide , 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless and whether or not the patient’s request was voluntary or well considered .Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective. However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act. (shrink)

The Oxford Handbook of Psychiatric Ethics is the most comprehensive treatment of the field in history. The volume is organized into ten sections which survey the scope of the text: Introduction, People Come First, Specific Populations, Philosophy and Psychiatric Ethics, Religious Contexts of Psychiatric Ethics, Social Contexts of Psychiatric Ethics, Ethics in Psychiatric Citizenship and the Law, Ethics of Psychiatric Research, Ethics and Values in Psychiatric Assessment and Diagnosis, Ethics and Values in Psychiatric Treatment. Written and edited by an international (...) team of experts, this landmark book provides a powerful and compelling review of psychiatric ethics in the 21st Century. (shrink)

This paper examines mortality by cause of death in a rural area of Machakos district in Kenya. The cause-of-death data collected between 1975 and 1978 were likely to be of fairly good quality. The number of deaths was higher among infants and children. Infectious diseases and diseases of the respiratory system were the leading causes of death among children below 5 years of age. Next in prominence were the causes ascribed to congenital anomalies and perinatal conditions.Among adolescents and young adults, (...) injury and poisoning, together with tuberculosis and other infectious and parasitic diseases, were the leading causes of death. Degenerative diseases, especially diseases of the circulatory system and neoplasms and respiratory illness, were responsible for the majority of deaths among the older population. (shrink)

Aim: To examine how physicians’ life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making.Methods: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large (...) life-stance groups in each country.Results: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient’s death , physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics and Protestants reported ever having made such a decision.Discussion: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations. (shrink)

Background: The Declaration of Helsinki, the World Medical Association’s statement of ethical guidelines regarding medical research, is published in the three official languages of the WMA: English, French and Spanish.Methods: A detailed comparison of the three official language versions was carried out to determine ways in which they differed and ways in which the wording of the three versions might illuminate the interpretation of the document.Results: There were many minor linguistic differences between the three versions. However, in paragraphs 1, 6, (...) 29, 30 and in the note of clarification to paragraph 29, there were differences that could be considered potentially significant in their ethical relevance.Interpretation: Given the global status of the Declaration of Helsinki and the fact that it is translated from its official versions into many other languages for application to the ethical conduct of research, the differences identified are of concern. It would be best if such differences could be eliminated but, at the very least, a commentary to explain any differences that are unavoidable on the basis of language or culture should accompany the Declaration of Helsinki. This evidence further strengthens the case for international surveillance of medical research ethics as has been proposed by the WMA. (shrink)