Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown (...) that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life. (shrink)

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown (...) that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life. (shrink)

The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.

In their 2007 paper, Swierstra and Rip identify characteristic tropes and patterns of moral argumentation in the debate about the ethics of new and emerging science and technologies (or “NEST-ethics”). Taking their NEST-ethics structure as a starting point, we considered the debate about tissue engineering (TE), and argue what aspects we think ought to be a part of a rich and high-quality debate of TE. The debate surrounding TE seems to be predominantly a debate among experts. When considering the NEST-ethics (...) arguments that deal directly with technology, we can generally conclude that consequentialist arguments are by far the most prominently featured in discussions of TE. In addition, many papers discuss principles, rights and duties relevant to aspects of TE, both in a positive and in a critical sense. Justice arguments are only sporadically made, some “good life” arguments are used, others less so (such as the explicit articulation of perceived limits, or the technology as a technological fix for a social problem). Missing topics in the discussion, at least from the perspective of NEST-ethics, are second “level” arguments—those referring to techno-moral change connected to tissue engineering. Currently, the discussion about tissue engineering mostly focuses on its so-called “hard impacts”—quantifiable risks and benefits of the technology. Its “soft impacts”—effects that cannot easily be quantified, such as changes to experience, habits and perceptions, should receive more attention. (shrink)

Heintz & Scott-Phillips propose that the partner choice ecology of our ancestors required Gricean cognitive pragmatics for reputation management, which caused a tendency toward showing and expecting prosociality that subsequently scaffolded language evolution. Here, we suggest a cognitively leaner explanation that is more consistent with comparative data and posits that prosociality and eventually language evolved along with cooperative breeding.

In academic research, many attempts have been undertaken to legitimize corporate community involvement by showing a business case for it. However, much less attention has been devoted to building understanding about the actual dynamics and challenges of managing CCI in the business context. As an alternative to existing predominantly static and top-down approaches, this paper introduces a social movement framework for analyzing CCI management. Based on the analysis of qualitative case study data, we argue that the active role of employees (...) pressuring for CCI policies and practices, as well as the organization audience responses to their efforts, are at the core of the challenges involved in managing CCI. These challenges also pose limits to how far CCI can be extended to a “business as usual” activity. (shrink)

Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in long-term (...) care of patients in VS/UWS. A qualitative study of transcripts on 2 Moral Deliberations (MD’s) in 2 cases of patients in VS/UWS in long-term care facilities. Six themes emerged: 1) Vision on VS/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes are related to professionals and to what families had expressed to the professionals. We found conflicts as well as contradictory feelings and thoughts to be a general feature in 4 of these themes, both in professionals and families. Conflicts were found in several actors: within families concerning all 6 themes, in nurse teams concerning the theme treatment and care plan, and between physicians concerning all 6 themes. Different visions, different expectations and hope on recovery, deviating goals and contradictory feelings/thoughts in families and professionals can lead to conflicts over a patient with VS/UWS. Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity upon visions, uniformity in treatment goals and plans, an open and empathic communication, expertise and understanding the importance of contradictory feelings/thoughts. Management should bridge conflicts and support their staff, by developing expertise, by creating stability and by facilitating medical ethical discourses. Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

About one third of patients with epilepsy have seizures refractory to the medical treatment. Electrical stimulation mapping is the gold standard for the identification of “eloquent” areas prior to resection of epileptogenic tissue. However, it is time-consuming and may cause undesired side effects. Broadband gamma activity recorded with extraoperative electrocorticography during cognitive tasks may be an alternative to ESM but until now has not proven of definitive clinical value. Considering their role in cognition, the alpha and beta bands could further (...) improve the identification of eloquent cortex. We compared gamma, alpha and beta activity, and their combinations for the identification of eloquent cortical areas defined by ESM. Ten patients with intractable focal epilepsy participated in a delayed-match-to-sample task, where syllable sounds were compared to visually presented letters. We used a generalized linear model approach to find the optimal weighting of each band for predicting ESM-defined categories and estimated the diagnostic ability by calculating the area under the receiver operating characteristic curve. Gamma activity increased more in eloquent than in non-eloquent areas, whereas alpha and beta power decreased more in eloquent areas. Diagnostic ability of each band was close to 0.7 for all bands but depended on multiple factors including the time period of the cognitive task, the location of the electrodes and the patient’s degree of attention to the stimulus. We show that diagnostic ability can be increased by 3–5% by combining gamma and alpha and by 7.5–11% when gamma and beta were combined. We then show how ECoG power modulation from cognitive testing can be used to map the probability of eloquence in individual patients and how this probability map can be used in clinical settings to optimize ESM planning. We conclude that the combination of gamma and beta power modulation during cognitive testing can contribute to the identification of eloquent areas prior to ESM in patients with refractory focal epilepsy. (shrink)

The Gesta Normannorum Ducum is one of the most important sources for the history of Normandy and England in the eleventh and twelfth centuries, and contains the earliest prose account of the Norman Conquest. It was written by a succession of authors, the first of whom was William of Jumieges, who wrote for William the Conqueror. Later historians, such as Orderic Vitalis and Robert of Torigni, interpolated and extended the chronicle as far as King Henry I. The later accretions reveal (...) much not only about changing attitudes towards the Norman invasion of England, but also about views of the early Viking foundations of Normandy.Elisabeth van Houts's two-volume edition is based on a study of all forty-seven extant manuscripts of the Gesta, including the earliest surviving copy of c. 1100, unknown until very recently. The full original text of William of Jumieges is supplied, as well as the integral text of the subsequent revisions and additions. Volume I contains Dr van Houts's introduction to the whole work, together with the text and translation of books i-iv. Volume II contains books v-viii. The edition forms an important contribution to our understanding of Anglo-Norman politics. (shrink)

The presence of general intelligence poses a major evolutionary puzzle, which has led to increased interest in its presence in nonhuman animals. The aim of this review is to critically evaluate this question and to explore the implications for current theories about the evolution of cognition. We first review domain-general and domain-specific accounts of human cognition in order to situate attempts to identify general intelligence in nonhuman animals. Recent studies are consistent with the presence of general intelligence in mammals (rodents (...) and primates). However, the interpretation of a psychometricgfactor as general intelligence needs to be validated, in particular in primates, and we propose a range of such tests. We then evaluate the implications of general intelligence in nonhuman animals for current theories about its evolution and find support for the cultural intelligence approach, which stresses the critical importance of social inputs during the ontogenetic construction of survival-relevant skills. The presence of general intelligence in nonhumans implies that modular abilities can arise in two ways, primarily through automatic development with fixed content and secondarily through learning and automatization with more variable content. The currently best-supported model, for humans and nonhuman vertebrates alike, thus construes the mind as a mix of skills based on primary and secondary modules. The relative importance of these two components is expected to vary widely among species, and we formulate tests to quantify their strength. (shrink)

In our society, where interest in Buddhist meditation is expanding enormously, numerous scientific studies are now conducted on the neurophysiological effects of meditation practices and on the neural correlates of meditative states. However, very few studies have been conducted on the experience associated with contemplative practice: what it is like to meditate -- from moment to moment, at different stages of practice -- remains almost invisible in contemporary contemplative science. Recently, 'micro-phenomenological' interview methods have been developed to help us become (...) aware of lived experience and describe it with rigour and precision. The present article presents the results of a pilot project1 aimed at applying these methods to the description of meditative experience. The first part of the article describes these methods and their adjustment for the investigation of meditative experience. The second part provides micro- phenomenological descriptions of two processes of which meditation practice enables the practitioner to become aware: the process of losing contact with the current situation and generation of virtual ones in 'mind-wandering' episodes, and the process of emergence of a thought. The third part of the article highlights the interest such descriptions may have for practitioners and for teachers of meditation, defines the status of these results, and outlines directions for further research. (shrink)

The Gesta Normannorum Ducum is one of the most important sources for the history of Normandy and England in the eleventh and twelfth centuries, and contains the earliest prose account of the Norman Conquest. It was written by a succession of authors, the first of whom was William of Jumièges, who wrote for William the Conqueror. Later writers, such as Orderic Vitalis and Robert of Torigni, interpolated and extended the chronicle as far as King Henry I. The later accretions reveal (...) much not only about changing attitudes towards the Norman invasion of England, but also about views of the early Viking foundation of Normandy. Elisabeth van Houts's two-volume edition is based on a study of all forty-seven extant manuscripts of the Gesta, including the earliest surviving copy of c. 1100, hitherto unknown. The full original text of William of Jumièges is supplied, as well as the integral text of the subsequent revisions and additions. Volume I contains Dr van Houts's introduction to the whole work, together with the text and translation of books i-iv. Books v-viii will appear in Volume II. The edition forms an important contribution to our understanding of Anglo-Norman politics. (shrink)

New developments in genetics are rapidly spreading over the Western World. The standards of clinical practice differ however according to local value- and health-care systems. In this article a short survey is given of Dutch developments in this field. An effort is made to explain the philosophical and ethical background of Dutch policy by concentrating on autonomy, responsibility and the right not to know.

In spatial sequence synaesthesia ordinal stimuli are perceived as arranged in peripersonal space. Using fMRI, we examined the neural bases of SSS and colour synaesthesia for spoken words in a late-blind synaesthete, JF. He reported days of the week and months of the year as both coloured and spatially ordered in peripersonal space; parts of the days and festivities of the year were spatially ordered but uncoloured. Words that denote time-units and triggered no concurrents were used in a control condition. (...) Both conditions inducing SSS activated the occipito-parietal, infero-frontal and insular cortex. The colour area hOC4v was engaged when the synaesthetic experience included colour. These results confirm the continued recruitment of visual colour cortex in this late-blind synaesthetes. Synaesthesia also involved activation in inferior frontal cortex, which may be related to spatial memory and detection, and in the insula, which might contribute to audiovisual integration related to the processing of inducers and concurrents. (shrink)

Background: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. Objectives: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. (...) Method: A modified Delphi study in two rounds Results: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as “confidentiality of genetic information” and “implications of research for relatives” which changes the impact and application of existing ethical topics such as “informed consent” and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. Conclusions: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics. (shrink)

Imagination contributes to human agency in ways that haven't been well understood. I argue here that pathways from imagistic imagining to emotional engagement support three important agential capacities: 1. bodily preparedness for potential events in one's nearby environment; 2. evaluation of potential future action; and 3. empathy-based moral appraisal. Importantly, however, the kind of pathway in question (I-C-E-C: imagining-categorization-emotion-conceptualization) also enables engagement with fiction. So human enchantment with fiction is a consequence of imaginative pathways that make us the kind of (...) agents we are. Finally, I use this approach to address imaginative resistance and the paradox of fiction. [The version archived here is a penultimate draft. Please email me at [email protected] to receive a pdf of the final in accordance with fair use.]. (shrink)

Background Studies describing physicians’ experiences with sedation at the end of life are indispensible for informed palliative care practice, but they are scarce. We describe the accounts of physicians from the USA and the Netherlands, two countries with different regulations on end-of-life decisions regarding their use of sedation.Methods Qualitative face-to-face interviews were held in 2007–2008 with 36 physicians , including primary care physicians and specialists. We applied purposive sampling and conducted constant comparative analyses.Results In both countries, the use of sedation (...) was described in diverse terms, especially in the USA, and was often experienced as emotionally challenging. Respondents stated different and sometimes multiple intentions for their use of sedation. Besides alleviating severe suffering, most Dutch respondents justified its use by stating that it does not hasten death, while most American respondents indicated that it might hasten death but that this was justifiable as long as that was not their primary intention. While many Dutch respondents indicated that they initiated open discussions about sedation proactively to inform patients about their options and to allow planning, the accounts of American respondents showed fewer and less-open discussions, mostly late in the dying process and with the patient's relatives.Conclusions The justification for sedation and the openness with which it is discussed were found to differ in the accounts of respondents from the USA and the Netherlands. Further clarification of practices and research into the effect and effectiveness of the use of sedation is recommended to enhance informed reflection and policy making. (shrink)

Background Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. Methods We compared preferences of (...) parents/patients at enrolment, documented by a questionnaire, with preferences developed during follow-up by an interview-study to investigate equipoise of child-participants and parents in the BeSt-for-Kids-study. This trial in new-onset Juvenile Idiopathic Arthritis-patients consists of three strategies. One strategy comprises initial treatment with a biological disease-modifying-antirheumatic-drug, currently not standard-of-care. Semi-structured interviews were conducted with 23 parents and 7 patients, median 11 months after enrolment. Results Initially most parents and children were not in equipoise. Parents/patients who refused participation, regularly declined due to specific preferences. Many participating families preferred the biological-first-strategy. They participated to have a chance for this initial treatment, and would even consider stopping trial-participation when not randomized for it. Their conviction of superiority of the biological-first strategy was based on knowledge from internet and close relations. According to four parents, the physician-investigator preferred the biological-first-strategy, but the majority stated that she had no preferred strategy. In phase 2, preferences tended to change to the treatment actually received. Conclusions Lack of equipoise during enrolment did not reduce study recruitment, mainly due to the fact that preferred treatment was only available within the study. Still, when developing a trial it is important to evaluate whether the physicians’ research question is in line with preferences of the patient-group. By exploring so-called ‘informed patient-group’-equipoise, successful recruitment may be enhanced and bias avoided. In our study, lack of equipoise during trial-participation did not reduce retention in those assigned to a less favoured option. We observed a change for preference towards treatment actually received, possibly explained by comparable outcomes in all three arms. (shrink)

A self-fulfilling prophecy in neuroprognostication occurs when a patient in coma is predicted to have a poor outcome, and life-sustaining treatment is withdrawn on the basis of that prediction, thus directly bringing about a poor outcome for that patient. In contrast to the predominant emphasis in the bioethics literature, we look beyond the moral issues raised by the possibility that an erroneous prediction might lead to the death of a patient who otherwise would have lived. Instead, we focus on the (...) problematic epistemic consequences of neuroprognostic SFPs in settings where research and practice intersect. When this sort of SFP occurs, the problem is that physicians and researchers are never in a position to notice whether their original prognosis was correct or incorrect, since the patient dies anyway. Thus, SFPs keep us from discerning false positives from true positives, inhibiting proper assessment of novel prognostic tests. This epistemic problem of SFPs thus impedes learning, but ethical obligations of patient care make it difficult to avoid SFPs. We then show how the impediment to catching false positive indicators of poor outcome distorts research on novel techniques for neuroprognostication, allowing biases to persist in prognostic tests. We finally highlight a particular risk that a precautionary bias towards early withdrawal of life-sustaining treatment may be amplified. We conclude with guidelines about how researchers can mitigate the epistemic problems of SFPs, to achieve more responsible innovation of neuroprognostication for patients in coma. (shrink)