Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or (...) more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (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 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)

Individuals make decisions under uncertainty every day. Decisions are based on in- complete information concerning the potential outcome or the predicted likelihood with which events occur. In addition, individuals’ choices often deviate from the rational or mathematically objective solution. Accordingly, the dynamics of human decision making are difficult to capture using conventional, linear mathematical models. Here, we present data from a 2-choice task with variable risk between sure loss and risky loss to illustrate how a simple nonlinear dynamical system can (...) be employed to capture the dynamics of human decision making under uncertainty (i.e., multistability, bifurcations). We test the feasibility of this model quantitatively and demonstrate how the model can account for up to 86% of the observed choice behavior. The implications of using dynamical models for explaining the nonlin- ear complexities of human decision making are discussed as well as the degree to which the theory of nonlinear dynamical systems might offer an alternative framework for understanding human decision making processes. (shrink)

Cette étude analyse la pensée actuelle sur les décisions-fin-de-vie (DfdV) en France d’un point de vue hollandais. Un nombre limité d’interviews avec des ‘opinion-leaders’ français est pris comme base du project. Jusqu’au jour présent, le domaine des DfdV en France a été troublé en l’absence de définitions et de législation plus spécifiques. Les médecins français pourront faire face à un dilemme en soignant un malade mourant, pris en étau entre le caractère illégal officiel de l’euthanasie d’une part et l’obligation professionnelle (...) de traiter chaque cas de façon particulière d’autre part. La conséquence de l’environnement réglementaire incertain est une déresponsabilisation des médecins français vis-à-vis de leurs collègues et des patients. L’adoption de réformes législatives, en ayant la possibilité d’augmenter le nombre de cas d’euthanasie, se heurtait en France à des arguments cartésiens, paternalistes et religieux. En Novembre 2004, l’Assemblée Nationale a adopté une proposition de loi ayant pour but de rendre plus transparente la mise en pratique des limitations et des arrêts de traitement et de reduire la crainte des médecins de poursuites pénales. Cette proposition de loi a été par la suite approuvée par le Sénat. Aux Pays-Bas, l’euthanasie–la terminaison active de la vie–est légale et régulée par des critères précis. L’approche hollandaise fait référence au concept anglo-saxon d’autonomie du patient et correspond à la préférence générale de la société hollandaise pour la révélation et la régulation des activités controversielles plutôt que de tolérer leur existence sub rosa. Depuis l’entrée en vigueur de la régulation sur l’euthanasie aux Pays-Bas le nombre de cas rapportés a augmenté, mais pas le nombre d’euthanasies. Les règles sont respectées et la qualité de la communication entre médecin et patient est élevée. La vigilance Française pour l’autonomie professionnelle offre un exemple de valeur pour les Hollandais. Les Hollandais, de leur part, fournissent des exemples concrets pour la régulation du domaine des DfdV en France dont on a fait un début récemment. (shrink)

Individuals make decisions under uncertainty every day based on incomplete information concerning the potential outcome of the choice or chance levels. The choices individuals make often deviate from the rational or mathematically objective solution. Accordingly, the dynamics of human decision-making are difficult to capture using conventional, linear mathematical models. Here, we present data from a two-choice task with variable risk between sure loss and risky loss to illustrate how a simple nonlinear dynamical system can be employed to capture the dynamics (...) of human decision-making under uncertainty (i.e., multi-stability, bifurcations). We test the feasibility of this model quantitatively and demonstrate how the model can account for up to 86% of the observed choice behavior. The implications of using dynamical models for explaining the nonlinear complexities of human decision-making are discussed, as well as the degree to which nonlinear dynamical systems theory might offer an alternative framework for understanding human decision-making processes. (shrink)

Interactive technology assessment (iTA) provides an answer to the ethical problem of normative bias in evaluation research. This normative bias develops when relevant perspectives on the evaluand (the thing being evaluated) are neglected. In iTA this bias is overcome by incorporating different perspectives into the assessment. As a consequence, justification of decisions based on the assessment is provided by stakeholders having achieved agreement. In this article, agreement is identified with wide reflective equilibrium to show that it indeed has the potential (...) of justifying decisions. We work out several conditions for this agreement to be achievable and just. (shrink)

OBJECTIVES: Cognitive and sensory difficulties frequently jeopardize informed consent of frail elderly patients This study is the first to test whether preliminary research experience could enhance geriatric patients' capacity to consent. DESIGN/SETTING: A step-wise consent procedure was introduced in a study on fluid balance in geriatric patients. Eligible patients providing verbal consent participated in a try-out of a week, during which bioelectrical impedance and weight measurements were performed daily. Afterwards, written informed consent was requested. Comprehension, risk and inconvenience scores (ranges: (...) 0-10) were obtained before and after the try-out by asking ten questions about the study's essentials and by asking for a risk and inconvenience assessment on a ten-points rating scale. SUBJECTS AND RESULTS: Seventy of the 78 eligible subjects started the try-out and 53 (68%) provided written consent. The comprehension score increased from 5.0 (+/- 2.3) to 7.0 (+/- 1.9) following the try-out (P < 0.001). The number of subjects capable of weighing risks and inconveniences increased from 32 to 48 (P < 0.001). CONCLUSIONS: Research experience improved the capacity to consent, still enabling an acceptable participation rate. Therefore, experienced consent seems a promising tool to optimize informed consent in frail elderly subjects. (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)

Argumentation as the public exchange of reasons is widely thought to enhance deliberative interactions that generate and justify reasonable public policies. Adopting an argumentation-theoretic perspective, we survey the norms that should govern public argumentation and address some of the complexities that scholarly treatments have identified. Our focus is on norms associated with the ideals of correctness and participation as sources of a politically legitimate deliberative outcome. In principle, both ideals are mutually coherent. If the information needed for a correct deliberative (...) outcome is distributed among agents, then maximising participation increases information diversity. But both ideals can also be in tension. If participants lack competence or are prone to biases, a correct deliberative outcome requires limiting participation. The central question for public argumentation, therefore, is how to strike a balance between both ideals. Rather than advocating a preferred normative framework, our main purpose is to illustrate the complexity of this theme. (shrink)

Background: We aimed to determine the smallest changes in health-related quality of life (HRQoL) scores in the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire core 30 and the Brain Cancer Module (QLQ-BN20), which could be considered as clinically meaningful in brain cancer patients. Materials and methods: World Health Organisation performance status (PS) and mini-mental state examination (MMSE) were used as clinical anchors appropriate to related subscales to determine the minimal clinically important differences (MCIDs) in HRQoL (...) change scores (range 0-100) in the QLQ-C30 and QLQ-BN20. A threshold of 0.2 standard deviation (SD) (small effect) was used to exclude anchor-based MCID estimates considered too small to inform interpretation. Results: Based on PS, our findings support the following integer estimates of the MCID for improvement and deterioration, respectively: physical (6, 9), role (14, 12), and cognitive functioning (8, 8); global health status (7, 4(star)), fatigue (12, 9), and motor dysfunction (4(star), 5). Anchoring with MMSE, cognitive functioning MCID estimates for improvement and deterioration were (11, 2(star)) and for communication deficit were (9, 7). Estimates with asterisks were <0.2 SD and were excluded from our MCID range of 5-14. Conclusion: These estimates can help clinicians evaluate changes in HRQoL over time, assess the value of a health care intervention and can be useful in determining sample sizes in designing future clinical trials. (shrink)

The natural input memory (NIM) model is a new model for recognition memory that operates on natural visual input. A biologically informed perceptual preprocessing method takes local samples (eye fixations) from a natural image and translates these into a feature‐vector representation. During recognition, the model compares incoming preprocessed natural input to stored representations. By complementing the recognition memory process with a perceptual front end, the NIM model is able to make predictions about memorability based directly on individual natural stimuli. We (...) demonstrate that the NIM model is able to simulate experimentally obtained similarity ratings and recognition memory for individual stimuli (i.e., face images). (shrink)

Background: People with a personality disorder suffer from enduring inflexible patterns in cognitions and emotions, leading to significant subjective distress, affecting both self and interpersonal functioning. In clinical practice, Dance Movement Therapy is provided to clients with a PD, and although research continuously confirms the value of DMT for many populations, to date, there is very limited information available on DMT and PD. For this study, a systematic literature review on DMT and PD was conducted to identify the content of (...) the described DMT interventions and the main treatment themes to focus upon in DMT for PD.Methods: A systematic search was conducted across the following databases: EMBASE, MEDLINE, PubMed, WEB OF SCIENCE, PsycINFO/OVID, and SCOPUS following the PRISMA guidelines. The Critical Appraisal Skills Programme for qualitative studies was used to rank the quality of the articles. The Oxford Center for Evidence-based Medicine standards were applied to determine the hierarchical level of best evidence. Quantitative content analysis was used to identify the intervention components: intended therapeutic goals, therapeutic activities leading to these goals, and suggested therapeutic effects following from these activities. A thematic synthesis approach was applied to analyze and formulate overarching themes.Results: Among 421 extracted articles, four expert opinions met the inclusion criteria. Six overarching themes were found for DMT interventions for PD: self-regulation, interpersonal relationships, integration of self, processing experiences, cognition, and expression and symbolization in movement/dance. No systematic descriptions of DMT interventions for PD were identified. A full series of intervention components could be synthesized for the themes of self-regulation, interpersonal relationships, and cognition. The use of body-oriented approaches and cognitive strategies was in favor of dance-informed approaches.Conclusions: Dance movement therapists working with PD clients focus in their interventions on body-related experiences, non-verbal interpersonal relationships, and to a lesser extent, cognitive functioning. A methodological line for all intervention components was synthesized for the themes of self-regulation, interpersonal relationships, and cognition, of importance for developing systematic intervention descriptions. Future research could focus on practitioners' expertise in applying DMT interventions for PD to develop systematic intervention descriptions and explore the suitability of the identified themes for clinical application. Clients' experiences could offer essential insights on how DMT interventions could address PD pathology and specific PD categories. (shrink)

BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social (...) licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance. (shrink)