Health care professionals often face moral dilemmas. Not dealing constructively with moral dilemmas can cause moral distress and can negatively affect the quality of care. Little research has been documented with methodologies meant to support professionals in care for the homeless in dealing with their dilemmas. Moral case deliberation is a method for systematic reflection on moral dilemmas and is increasingly being used as ethics support for professionals in various health-care domains. This study deals with the question: What is the (...) contribution of MCD in helping professionals in an institution for care for the homeless to deal with their moral dilemmas? A mixed-methods responsive evaluation design was used to answer the research question. Five teams of professionals from a Dutch care institution for the homeless participated in MCD three times. Professionals in care for the homeless value MCD positively. They report that MCD helped them to identify the moral dilemma/question, and that they learned from other people’s perspectives while reflecting and deliberating on the values at stake in the dilemma or moral question. They became aware of the moral dimension of moral dilemmas, of related norms and values, of other perspectives, and learned to formulate a moral standpoint. Some experienced the influence of MCD in the way they dealt with moral dilemmas in daily practice. Half of the professionals expect MCD will influence the way they deal with moral dilemmas in the future. Most of them were in favour of further implementation of MCD in their organization. (shrink)

OBJECTIVES: To identify the factors that influence the assessment of reported cases of physician-assisted death by members of the public prosecution. DESIGN/SETTING: At the beginning of 1996, during verbal interviews, 12 short case-descriptions were presented to a representative group of 47 members of the public prosecution in the Netherlands. RESULTS: Assessment varied considerably between respondents. Some respondents made more "lenient" assessments than others. Characteristics of the respondents, such as function, personal-life philosophy and age, were not related to the assessment. Case (...) characteristics, i.e. the presence of an explicit request, life expectancy and the type of suffering, strongly influenced the assessment. Of these characteristics, the presence or absence of an explicit request was the most important determinant of the decision whether or not to hold an inquest. CONCLUSIONS: Although the presence of an explicit request, life expectancy and the type of suffering each influenced the assessment, each individual assessment was dependent on the assessor. The resulting danger of legal inequality and legal uncertainty, particularly in complicated cases, should be kept to a minimum by the introduction of some form of protocol and consultation in doubtful or boundary cases. The notification procedure already promotes a certain degree of uniformity in the prosecution policy. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

Family carers of individual’s living with Huntington’s Disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life for this group. The Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) was expanded and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half (...) of the sample, demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) was developed based on more stringent criteria. Confirmatory Factor Analysis of the model structure showed a good fit for all Factors and, indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of quality of life. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future and overall quality of life. Carers with children who were at risk, carried the gene or were symptomatic also had poorer quality of life outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported quality of life in family carers of individual’s living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

Background: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of serious harm for the clients or (...) their surroundings. Research question: What do support staff consider as restraints on freedom and how do they justify these restraints? Research design: In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. Findings: Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. Discussion: In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client’s competence. Conclusion: Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client. (shrink)

Society’s relationship with modern animal farming is an ambivalent one: on the one hand there is rising criticism about modern animal farming; on the other hand people appreciate certain aspects of it, such as increased food safety and low food prices. This ambivalence reflects the two faces of modernity: the negative (exploitation of nature and loss of traditions) and the positive (progress, convenience, and efficiency). This article draws on a national survey carried out in the Netherlands that aimed at gaining (...) a deeper understanding about the acceptance of modern dairy farming in Dutch society. People take two dimensions into account when evaluating different aspects of modern dairy farming: (1) the way living beings are used for production and (2) the way a dairy farm functions as a business. In both these dimensions people appeared to adopt cautious opinions: most people preferred relatively traditional and natural farms and were concerned about the use of nature and treatment of animals in modern production—although this did not imply an outright rejection of modern animal farming. The study also looked for (and sought to explain) differences of opinion between social groups. Besides socio-demographic factors such as age and gender, farming experience and value-orientation (such as socially minded and professional) appeared to be important variables. The values and convictions within modern society can help to explain why some people are greatly concerned about animal welfare while some show less concern. This diversity also helps to explain why general information campaigns are quite ineffective in allaying concerns about modern animal farming. (shrink)

In this article the perspective shifts to the “upstream” end of the agricultural knowledge and information system (AKIS). Because knowledge policy and strategic decision-making are not the prerogative of the public sector, organizations such as cooperative unions and multinational companies are included. After considering the influence of the changing environment on the nature of the AKIS, the role of knowledge management and policy in the emerging knowledge and information market is examined. Special attention is given to public and private R&D. (...) The article then looks where information technology (IT) fits in and what considerations determine strategic investment in IT projects and sustained services. Some of the European experiences with this strategic investment are evaluated. (shrink)

Research on social influences often distinguishes between social and quality incentives to ascribe meaning to the value that popularity conveys. This study examines the neural correlates of those incentives through which popularity influences preferences. This research reports an functional magnetic resonance imaging experiment and a behavioral task in which respondents evaluated popular products with three focus perspectives; unspecified focus, focus on social aspects, and focus on quality. The results show that value derived with a social focus reflects inferences of approval (...) and reward value, and positively affects preferences. Value derived with a quality focus reflects inferences of quality and negatively affects preferences. This study provides evidence of two distinct inferential routes on both a neurological level, represented by different regions in the brain, and a behavioral level. These results provide the first evidence that a single popularity cue can in different ways influence the value derived from product popularity. (shrink)

BackgroundPregnant people have been overlooked or excluded from clinical research, resulting in a lack of scientific knowledge on medication safety and efficacy during pregnancy. Thus far, both the opportunities to generate evidence-based knowledge beyond clinical trials and the role of pregnant people in changing their status quo have not been discussed. Some scholars have argued that for rare disease patients, for whom, just like pregnant people, a poor evidence base exists regarding treatments, solidarity has played an important role in addressing (...) the evidence gap. This paper explores whether and how the enactment of solidarity among pregnant people can be stimulated to help address the poor evidence base on medications used during pregnancy.MethodWe use the concept of solidarity formulated by Prainsack and Buyx and enrich their concept by providing an account for stimulating the enactment of solidarity. Then we apply this account to the case of pregnant people who use medication.ResultsSolidarity means enacted commitment on the part of an individual to assisting others with whom the person recognizes a similarity in a relevant respect. Although solidarity cannot be imposed, we argue that the empowerment of people is a crucial concept in understanding how solidarity can be stimulated. Empowerment in the context of pregnant people means creating awareness about their status quo, explaining how scientific research can help close the knowledge gap, and how pregnant people can themselves contribute. In particular, how pregnant people can contribute to the collection of health data to strengthen the evidence base for medications used during pregnancy.ConclusionsWe conclude that acting in solidarity can help change the status quo for pregnant people. Furthermore, we argue that the empowerment of pregnant people and other relevant stakeholders is a way to stimulate the enactment of solidarity. The process of empowerment starts by raising awareness about the lack of evidence on medications used during prengnacy and by explaining to pregnant people how they can contribute to changing the way knowledge is being generated by, for example, sharing data on the health effects of medications. (shrink)

As we owe the division of ecology into autecology and synecology to botanists, the arguments for this subdivision and also the definitions and contents of both subsciences as given bySchröter, Flahault &Schröter, Gams andDu Rietz are communicated in full. The same is the case with the division of ecology given by the zoologistsAdams andChapman. Moreover the opinions of these authors in this respect are critisized in detail as well as in their general aspects. This critique is connected with the author's (...) own positive opinion, which is given at the end of the paper, where also the remarks covered by the first two papers of this series are summarised.In ecology as a biological science either the individual or the complex of individuals has to occupy a central position. Therefore science about the environment, especially the abiotic one, as well as science about a definite region or spot of the earth ought not to be incorporated in biology.In autecology the individual occupies a central position, it is one of the subsciences of idiobiology, it is a science about the relations to environment, taken in the broadest sense. Dependent upon the contents of this we have many definitions of ecology, the most important ones being: 1) ecology is a biogeographical subscience; 2) ecology is taken in the sense of ethology; 3) ecology is taken as a science of the teleological relations of the individual to its environment and the objects in it, thus of the non-causal relations, the causal ones being assigned to physiology. These non-causal relations appear under four aspects, all called teleological, i.e. the true purpose-notion, relation in the sense of requirement, that in the sense of wholeness, and of adaptation and the degree of adaptation. Adaptation is taken in a broad sense, covering as well the degree of adaptation , as the latitude of the possibility of adaptation and the degree of variability of the individual to adapt itself. The proposal is made to confine the term autecology to this teleological aspect of the relations of the individual, i.e. of all its characters, not of the epharmonic ones only, to environment.In synecology the complex of individuals, showing direct real connections during individual life, occupies a central position, with equal scientific interest for all members of the complex. Synecology contains all biological scientific contents about this matter. The application ofTschulok's system of subsciences to synecology is critisized and the development of the system of these subsciences is left to its developmental fate in time. Considering the importance of the knowledge of the tendencies of thought for the development of synecology an attempt is made to state those already applied in synecology; author distinguishes the systematical, the mathematical, the causal, the historical, the teleological and the essential tendency of thought. Also the difference in the tendencies of thought shows that autecology and synecology are to be separated in a logical system of biological subsciences.Puisque c'est aux botanistes que nous devons la division de l'écologie en autécologie et synécologie, l'auteur passe en revue tous les arguments qui ont amené les biologistes à faire cette subdivision, ainsi que les définitions de ces deux subsciences et les matières qu'elles comprennent, comme elles sont données parSchröter, Flahault &Schröter, Gams etdu Rietz. Il en fait de même pour la division de l'écologie faite par les zoologistesAdams etChapman. En outre il discute les opinions de ces auteurs sous ce rapport, dans leurs détails aussi bien que dans leurs aspects généraux. Cette discussion est en rapport avec l'opinion positive de l'auteur, qu'il expose à la fin de l'article, où se trouvent résumées également les remarques qui se trouvaient déjà dans les deux premiers articles de cette série.Dans l'écologie, en tant que science biologique, l'individu — ou bien l'ensemble des individus — doit occuper une position centrale. C'est pourquoi ni la science qui concerne le milieu, en particulier le milieu abiotique, ni la science qui se rapporte à une région ou un endroit défini de la terre, ne devrait être incorporée dans la biologie.Dans l'autécologie l'individu occupe une position centrale. Cette science est une des subsciences de l'idiobiologie; elle se rapporte aux relations entre le sujet et son milieu — „milieu” pris dans le sens le plus large du mot. Selon les significations diverses qu'on peut attacher aux termes „relations” et „milieu”, nous avons plusieurs définitions de l'écologie, parmi lesquelles les plus importantes suivent ci-dessous:1)L'écologie est une subscience biogéographique; 2) le terme „écologie” est pris dans le sens d'éthologie; 3) l'écologie est considérée comme la science des relations téléologiques entre l'individu et son milieu et les objets se trouvant dans ce milieu; elle est donc considérée comme la science des relations non-causales, les relations causales étant conférées à la physiologie. Ces relations non-causales se présentent sous quatre aspects, tous appelés téléologiques, c. à. d. la vraie notion de but, les relations dans le sens de besoins, les relations dans le sens de „tout” et les relations dans le sens d'adaptation et de degré d'adaptation.Le mot „adaptation” est pris dans un sens étendu, comprenant aussi bien le degré d'adaptation que l'amplitude de la possibilité d'adaptation et le degré de variabilité dans l'adaptation de l'individu à son milieu. L'auteur propose de restreindre le terme „autécologie” à cet aspect téléologique des relations entre l'individu et son milieu; il s'agit ici, bien entendu, de toutes les qualités de l'individu et non seulement des qualités epharmoniques.Dans la synécologie l'ensemble des individus montrant des rapports directs et réels durant la vie individuelle occupe une position centrale et offre un intérêt scientifique pareil pour tous les membres de l'ensemble. La synécologie comprend tout ce qu'il y a à dire sur cette matière par rapport à la science biologique. L'application du système des subsciences deTschulok à la synécologie est critiquée par l'auteur, qui juge prématuré de s'occuper déjà d'un tel système de subsciences: l'avenir seul nous apprendra quel système se développera ici. Vu l'importance d'une connaissance exacte des différentes tendances de penser pour le développement de la synécologie, l'auteur s'efforce de rassembler celles qui ont déjà été appliquées dans la synécologie; il distingue les tendances de penser systématique, mathématique, causale, historique, téléologique et essentielle . En outre les différences entre ces tendances de penser démontrent, que l'autécologie et la synécologie doivent être séparées dans un système logique de subsciences biologiques. (shrink)

We performed an EEG graph analysis on data from 31 typical readers (22.27 ± 2.53 y/o) and 24 dyslexics (22.99 ± 2.29 y/o), recorded while they were engaged in an audiovisual task and during resting-state. The task simulates reading acquisition as participants learned new letter-sound mappings via feedback. EEG data was filtered for the delta (0.5–4 Hz), theta (4–8 Hz), alpha (8–13 Hz), and beta (13–30 Hz) bands. We computed the Phase Lag Index (PLI) to provide an estimate of the (...) functional connectivity between all pairs of electrodes per band. Then, networks were constructed using a Minimum Spanning Tree (MST), a unique sub-graph connecting all nodes (electrodes) without loops, aimed at minimizing bias in between groups and conditions comparisons. Both groups showed a comparable accuracy increase during task blocks, indicating that they correctly learned the new associations. The EEG results revealed lower task-specific theta connectivity, and lower theta degree correlation over both rest and task recordings, indicating less network integration in dyslexics compared to typical readers. This pattern suggests a role of theta oscillations in dyslexia and may reflect differences in task engagement between the groups, although robust correlations between MST metrics and performance indices were lacking. (shrink)

The participation of vulnerable patients in clinical research poses apparent ethical dilemmas. Depending on the nature of the vulnerability, their participation may challenge the ethical principles of autonomy, non-maleficence, or justice. On the other hand, non-participation may preclude the building of a knowledge base that is a prerequisite for defining the optimal clinical management of vulnerable patients. Such clinical uncertainty may also incur substantial economic costs. We present the participation of pre-menopausal women with atrial fibrillation in trials of novel oral (...) anticoagulant drugs as a case study. Due to their non-participation in pivotal trials, it is uncertain whether for them, the risks that are associated with these drugs are outweighed by the advantages compared with conventional treatment. We addressed the question whether research of this new class of drugs in this subgroup would be appropriate from both, an ethical as well an economic perspective. We used the method of specifying norms as a wider framework to resolve the apparent ethical dilemma, while incorporating the question whether research of oral anticoagulants in premenopausal women with atrial fibrillation can be justified on economic grounds. For the latter, the results of a value-of-information analysis were used. Further clinical research on NOACs in premenopausal women with atrial fibrillation can be justified on both, ethical and economic grounds. Addressing apparent ethical dilemmas by invoking a method such as specifying norms can improve the quality of public practical reasoning. As such, the method should also prove valuable to committees that have formally been granted the authority to review trial protocols and proposals for scientific research. (shrink)

In a serial reaction time task, procedural memory was examined in Dissociative Identity Disorder . Thirty-one DID patients were tested for inter-identity transfer of procedural learning and their memory performance was compared with 25 normal controls and 25 controls instructed to simulate DID. Results of patients seemed to indicate a pattern of inter-identity amnesia. Simulators, however, were able to mimic a pattern of inter-identity amnesia, rendering the results of patients impossible to interpret as either a pattern of amnesia or a (...) pattern of simulation. It is argued that studies not including DID-simulators or simulation-free memory tasks, should not be taken as evidence for amnesia in DID. (shrink)

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a “standard case” of a patient with physical suffering and limited life expectancy, the descriptions included cases in (...) which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. Results: The cases were recognisable for almost all respondents. For the “standard case” nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2–49%) than consultants (25–79%) and members of the euthanasia review committees (24–88%). In each group, the suffering of patients with early dementia and patients who were “tired of living” was least often considered to be unbearable. Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient’s suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia. (shrink)