The motivations of health service users and health care professionals to engage in participative practices differ. Health service users want to improve the patient experience by reducing epistemic injustices and increasing well-being, from a social justice perspective. Six motivations underlying participation co-exist (utilitarian, methodological, democratic, consumerist, epistemic, and emancipatory). However, the compatibility of these motivations is not obvious. Moreover, democracy in health care has become protean and tensions are appearing between representative democracy and participatory democracy, of the indirect type. Combining (...) the epistemic profiles of users with the different motivations and reasons for action, and viewing them through the prism of complementarity could alleviate these tensions. (shrink)

When categories of actors are discredited, epistemic inequalities produce testimonial or hermeneutic injustices. These injustices manifest themselves in the absence of recognition of the knowledge of others and in the fact that their ability to understand is called into question. Moreover, although they are subjected to exogenous norms in which they do not find themselves, the people subjected to these injustices find it difficult to assert this and to identify their own norms. These two types of injustice alter the quality (...) of care relationships, particularly in terms of relational ethics, by eroding the trust between caregivers and patients. In order to counteract these, a pedagogical experiment based on democratic and epistemic logics was proposed to health students. This experiment has three pillars: teaching on the partnership between health professionals and patients, patients as teachers or mentors and patients as colleagues. These three pillars are presented as interrelated, one not going without the other. On the democratic level, the aim is to rebalance the power relationships. Thus, it is patients who recruit patients and the latter have a status. At the epistemic level, the aim is to rebalance knowledge relationships, which involves questioning knowledge and standards in terms of their consequences on patients, or more precisely on the “patient experience”. Two different and complementary pedagogical programs have been implemented to create a pedagogical experience within a medical faculty (Sorbonne Paris Nord University) located in the city of Bobigny, which is now called the “Bobigny experience”. The aim of the first is to use the “patient perspective” to resolve clinical situations, while the second is to use narrative medicine to combine the experiences of students and patients on specific topics. (shrink)

In prevention and health promotion interventions, screening methods and risk profile assessments are often used as tools for establishing the interventions’ effectiveness, for the selection and determination of the health status of participants. The role these instruments fulfil in the creation of effectiveness and the effects these instruments have themselves remain unexplored. In this paper, we have analysed the role screening methods and risk profile assessments fulfil as part of prevention and health promotion programmes in the selection, enrolment and participation (...) of participants. Our analysis showed, that screening methods and health risk assessments create effects as they objectify health risks and/or the health status of individuals, i.e., they select the individuals ‘at risk’ and indicate the lifestyle modifications these people are required to make in order to improve their health. Yet, these instruments also reduce the group of participants thereby decreasing the possible effect of interventions, as they provide the legitimisation for people to make choices to whether they enrol or not and what lifestyle changes they incorporate into their lives. In other words, they present a space of interaction, in which agency is distributed across the practice nurses, the participants and the instruments. Decisions were not just made upon the projection of the outcomes of these instruments; decisions that were made by both the patients and practice nurses were the resultant of their opinions on these outcomes that were formed in interaction with the instruments. (shrink)

Motor imagery provides a direct insight into action representations. The aim of the present study was to investigate the level of impairment of action monitoring in schizophrenia by evaluating the performance of schizophrenic patients on mental rotation tasks. We raised the following questions: Are schizophrenic patients impaired in motor imagery both at the explicit and at the implicit level? Are body parts more difficult for them to mentally rotate than objects? Is there any link between the performance and (...) the hallucinating symptom profile? The schizophrenic patients displayed the same pattern of performance as the control subjects . More particularly, schizophrenic patients’ reaction time varied as a function of the angular disparity of the stimuli. On the other hand, they were significantly slower and less accurate. Interestingly, patients suffering from hallucinations made significantly more errors than non-hallucinatory patients. We discussed these latter results in terms of deficit of the forward model. We emphasized the necessity to distinguish different levels of action, more or less impaired in schizophrenia. (shrink)

This article proposes a retrospective analysis of a compassionate use, using a case study of request for Avelumab for a patient suffering from Merkel Cell Carcinoma. The study is the result of a discussion within a Provincial Ethics Committee following the finding of a high number of requests for CU program. The primary objective of the study is to illustrate the specific ethical and clinical profiles that emerge from the compassionate use program issue. The secondary goals are: a) to promote (...) a moral reflection among physicians who require approval for the CUP and b) provide the basis for recommendations on how to request CUP. The instruments for carrying out the analysis of the case study and the discussion are as follows: Analysis of the audio-recording of the EC meeting regarding the selected Case study. In-depth discussion of topics that emerged during the meeting by means of administration of 5 semi-structured interviews with 2 doctors involved in the case and with 3 components of the EC who played a major role in the EC internal discussion. In an exploration of emerging clinical and ethical issues, four primary themes arise: 1. efficacy, safety of the treatment and patient’s quality of life; 2. clear, realistic, adequate communication; 3. right to hope; 4. simultaneous Palliative Care approach. The results of ethical analysis carried out concern two areas: 1) ethical profiles relating to the use of CUP; 2) the role of the EC concerning the compassionate use of drugs and the need to provide recommendations on how to request CUP. With the aim of implementing these conclusions, the provincial EC of Reggio Emilia chose to steer the request for drugs for compassionate use through recommendations for good clinical and ethical practice based on the following assumptions: 1) the “simultaneous care” approach must be preferred. Secondly, 2) the EC’s assessment must be part of the decision-making process that the care team conducts before proposing compassionate use to the patient. (shrink)

El proceso de atención de enfermería es la aplicación del método científico en la práctica asistencial de la disciplina, de modo que se pueda ofrecer cuidados sistematizados, lógicos y racionales. El artículo que presentamos tiene como objetivo describir un sistema de acciones y operaciones para desarrollar la habilidad diagnosticar en el proceso de atención de enfermería y ser aplicado en la docencia de manera que contribuya en la calidad del egresado. A partir del análisis del perfil profesional y del grado (...) de desarrollo científico-técnico alcanzado y su relación con la identificación de los problemas que constituyen la base del plan de cuidados en el proceso de atención de enfermería se estructuran las acciones y operaciones con una secuencia lógica para llegar al diagnóstico. The process of nursing primary health care is the application of the scientific method in the assistencial practice of this discipline in such a way that it can offer systematic, logical and rational care. The present article has the objective to describe a system of actions and procedures to develop the ability of diagnosing in the process of nursery primary health care and be applied in teaching to favour the increasement of the egressed quality. Actions and procedures have been structured with a logical secuence to reach the diagnosing, starting with the analysis of the professional profile, the level of scientific and technical development reached and its relation with the identification of problems that constitute the base of the patient plan of care in the process of nursery primary health care. (shrink)

Intersex is an umbrella term for variations in sexual characteristics. Although 1.7% to 4% of the population is born outside the framework of sexual binarity, the bodies of intersex people are pathologized and, according to medical specialists, in need of “repair”. This institutional stigmatization takes the form of sex reassignment surgery or hormone treatments, justified by socio-cultural premises based on heterosexist norms. Medical discourse is based less on the health, physical and psychological dangers of intersex patients than on safeguarding (...) gendered bicategorization. At the same time, individuals with intersex variations are demanding their right to self-determination, in particular through respect for their free and informed consent. Sex-assignment surgery, motivated and oriented by historically constructed gender binarity, lead to two types of epistemic injustice. A conceptual philosophical analysis of testimonial injustice and hermeneutic injustice will help us to understand the process of making intersex invisible through the epistemic relationship between intersex people and physicians. (shrink)

Cet article s’appuie sur les résultats d’une étude menée en partenariat entre une équipe pluridisciplinaire de cliniciens en santé mentale de Montréal, spécialisés en intervention auprès de personnes attirées par ou engagées dans l’extrémisme violent, et une équipe de recherche qui documente et étudie les interventions de l’équipe. L’étude documente l’émergence de systèmes de croyances de plus en plus dystopiques, hétérogènes et violents, particulièrement chez les jeunes. La perte de confiance dans les institutions et un malaise autour des représentations et (...) rôles de genre sont des thématiques récurrentes. Une analyse des dynamiques familiales et sociales dans les trajectoires de patients attirés par l’extrémisme violent suggère l’existence de processus traumatiques de quête de sens et d’appartenance qui font écho à des mécanismes de perte, de régression et de deuil. Les auteurs proposent de concevoir ce mécanisme comme un « deuil épistémique » qui pourrait aider à expliquer l’émergence d’idéologies hybrides dans le paysage de l’extrémisme violent. (shrink)

Luc Faucher Dans cet article, je soulèverai un problème qui a été négligé jusqu’ici dans les écrits portant sur la philosophie de la psychiatrie au sujet du Research Domain Criteria : le fait que l’initiative découle des priorités de recherche du National Institute of Mental Health et que l’orientation de celles-ci ne permet pas de traiter certains aspects des conditions des patients qui sont jugés essentiels par ceux-ci. Après avoir démontré l’existence de ce problème, je vais tenter de voir (...) par quel moyen on pourrait l’éviter. Pour ce faire, je considérerai un programme, européen cette fois, le Roadmap for Mental Health Research in Europe et sa méthode pour intégrer une diversité de voix, dont celles des patients, dans le processus d’établissement des priorités de recherche. Je me livrerai ainsi à un exercice d’épistémologie sociale comparée en montrant comment certaines caractéristiques organisationnelles d’un des programmes possèdent des vertus épistémiques qui font défaut à l’autre et comment une plus grande justice épistémique pourrait être obtenue par l’implantation de certains mécanismes qui permettent à la voix des patients d’être entendue. (shrink)

t Intentional sampling methods are non-randomized procedures that select a group of individuals for a sample with the purpose of meeting specific prescribed criteria. In this paper we extend previous works related to intentional sampling, and address the problem of sequential allocation for clinical trials with few patients. Roughly speaking, patients are enrolled sequentially, according to the order in which they start the treatment at the clinic or hospital. The allocation problem consists in assigning each new patient to (...) one, and only one, of the alternative treatment arms. The main requisite is that the profiles in the alternative arms remain similar with respect to some relevant patients’ attributes (age, gender, disease, symptom severity and others). We perform numerical experiments based on a real case study and discuss how to conveniently set up perturbation parameters, in order to yield a suitable balance between optimality – the similarity among the relative frequencies of patients in the several categories for both arms, and decoupling – the absence of a tendency to allocate each pair of patients consistently to the same arm. (shrink)

The Gait Deviation Index is a multivariate measure of overall gait pathology based on 15 gait features derived from three-dimensional kinematic data. GDI aims at providing a comprehensive, easy to interpret, and clinically meaningful metric of overall gait function. It has been used as an outcome measure to study gait in several conditions: cerebral palsy, post-stroke hemiparetic gait, Duchenne muscular dystrophy, and Parkinson’s disease, among others. Nevertheless, its use in population with Spinal Cord Injury has not been studied yet. The (...) aim of the present study was to investigate the applicability of the GDI to SCI through the assessment of the relationship of the GDI with the Walking Index for Spinal Cord Injury II. 3D gait kinematics of 34 patients with incomplete SCI was obtained. Besides, 3D gait kinematics of a sample of 50 healthy volunteers was also gathered with Codamotion motion capture system. A total of 302 and 446 strides were collected. GDI was calculated for each stride and grouped for each WISCI II level. HV data were analyzed as an additional set. Normal distribution for each group was assessed with Kolmogorov-Smirnov tests. Afterward, ANOVA tests were performed between each pair of WISCI II levels to identify differences among groups. The results showed that the GDI was normally distributed across all WISCI II levels in both iSCI and HV groups. Furthermore, our results showed an increasing relationship between the GDI values and WISCI II levels in subjects with iSCI, but only discriminative in WISCI II levels 13, 19, and 20. The index successfully distinguished HV group from all the individuals with iSCI. Findings of this study indicated that the GDI is not an appropriate multivariate walking metric to represent the deviation of gait pattern in adult population with iSCI from a normal gait profile when it is compared with the levels of walking impairment described by the WISCI II. Future work should aim at defining and validating an overall gait index derived from 3D kinematic gait variables appropriate for SCI, additionally taking into account other walking ability outcome measures. (shrink)

Evidence-Based Medicine (EBM) and Personalized Medicine (PM) share a common goal: reducing the gap between the results of biomedical research and their clinical application. PM is, however, often presented as a “new paradigm” for medicine, just as EBM was in the 1990s. It covers a wide variety of projects but the core idea that generally unites them is the ambition of better taking account of individual specificities than did EBM with its statistical and population-centred approach. In this article, I concentrate (...) on PM in cancerology, the essence of which is to target treatments based on the molecular profile of the patient. This targeting is made possible by gaining better knowledge about the molecular mechanisms of cancers. The classification of patients as a function of their molecular profile entails the creation of patient sub-groups. This creates a problem for the traditional evaluation of therapeutic treatment promoted by EBM, in particular the use of randomized trials using sizeable cohorts. But a better understanding of the mechanisms and the greater precision of treatments could reduce the need for these trials. Does PM thus represent the revenge of a physio-pathological and mechanistic culture in clinical research against the statistical and empirical one of EBM? My objective is to show how current practices of PM leads to epistemological changes in our estimation of what count as relevant types of information and proof in medicine, in particular in the field of therapeutic evaluation. I defend the idea that PM, far from obviating the need for statistical approaches and the search for correlations, ultimately poses new challenges for EBM. PM drives EBM to strengthen the articulation and the integration of statistical and mechanistic data with a view to providing a better service for each patient. (shrink)

Personalized medicine has recently become the new horizon of healthcare policies worldwide, but it hasalso given rise to misunderstandings and conflicting debates due to the lack of clear definitions and appropriate framing. Personalized medicine is mainly defined as the tailoring of diagnosis and therapies to the genetic profile of each patient, both enhanced by considerable improvements of technologies for acquiring and processing large amounts of data. Is personalized medicine the right term however, considering that it focuses on signaling pathways at (...) the molecular level, where undoubtely persons as such cannot be found?The rival expression «person-centered medicine» has been coined to avoid any ambiguity: on the one hand, molecular biomedicine improved by high-throughtput molecular technologies is more legitimately labelled «individualized» or «precision» medicine, while on the other hand «person-centered medicine» is considered the only authentic personalized medicine insofar as it focuses on the patient as a whole.Far from overcoming the misunderstandings and conflicting views at stake in current debates on futuremedicine however, this divide between personalized and person-centered medicine gives rise to new difficulties and proves to be misleading. Conceptual confusions remain underinvestigated and undermine current attempts to clarify core issues of biomedical research and biomedicine today. This paper intends tohighlight these confusions. (shrink)

Background: In the present study, we aimed to better investigate attention system profile of Parkinson's disease-Mild Cognitive Impairment patients and to determine if specific attentional deficits are associated with 123I-FP-CIT SPECT.Methods: A total of 44 de novo drug-naïve PD patients [ with normal cognition and 17 with MCI ], 23 MCI patients and 23 individuals with subjective cognitive impairment were recruited at the Clinical Neurology Unit of Santa Chiara hospital. They were assessed by a wide neuropsychological battery, (...) including Visual Search Test measuring selective attention. Performances among groups were compared by non-parametric tests. Further, Spearman's rank correlations were performed to explore the association between neuropsychological variables and 123I-FP-CIT SPECT data in PD subgroup.Results: PD-MCI patients performed worse on VST than patients with PD-NC, patients with MCI and individuals with SCI. The performance of PD-MCI patients on VST significantly correlated with caudate nucleus 123I-FP-CIT SPECT uptake, whereas a negative correlation between such test and 123I-FP-CIT SPECT uptake in the left putamen was found in PD-NC patients.Conclusions: We suggest that selective attention deficit might be a trigger of cognitive decay in de novo PD-MCI patients. The VST should be routinely used to detect attentional deficits in hospital clinical practice, in the light of its closely association with dopamine depletion of basal ganglia in mildly impaired PD patients. (shrink)

Depuis une vingtaine d’années, le concept de « médecine personnalisée » désigne la possibilité d’adapter finement les diagnostics et thérapies au profil biologique, en particulier génétique, de chaque patient·e. L’article traite d’un aspect spécifique de la médecine personnalisée, celui du statut qu’y acquiert « l’environnement ». Il est unanimement admis que les gènes n’expliquent qu’un faible pourcentage des phénotypes pathologiques, l’environnement en constituant le principal facteur explicatif. Les efforts pour identifier et caractériser ces facteurs environnementaux sont aujourd’hui rassemblés sous une (...) nouvelle étiquette, l’ exposomique. Elle connaît deux orientations. L’une conduit à une vision industrielle, orientée vers la recherche de cibles susceptibles d’intervention technique. L’autre vise la critique des choix politiques et sociaux en matière de santé publique. L’article porte sur cette croisée des chemins dans la manière d’appréhender les rapports entre santé et environnement. (shrink)

Background: In psychiatry, the issue of providing palliative and end-of-life care for what would be a “terminal psychiatric condition” or considering a palliative approach to severe and persistent mental health problems is still a taboo. Methodology: This question is addressed through an analysis of a case arising during a clinical ethics consultation, using Hubert Doucet’s scenario method. It is about Mrs. Sanchez, a patient over 90 years of age with a psychiatric profile, expressing the desire to die by suicidal gestures, (...) refusing the proposed treatments, and refusing as well to drink and eat. Her clinical history is told through the filter of reflexive support offered in clinical ethics to the various stakeholders. Results: The case analysis, far from responding to the challenges posed by the concept of palliative and end-of-life care in a psychiatric context, nevertheless presents an opportunity to name its main ethical issues: psychic suffering, refusal to eat and drinking as well as refusal of treatment, palliative sedation and medical assistance in dying, wishes and advanced medical directives and clinical-organizational challenges for geriatric psychiatry clients. Conclusion: There are still many challenges for professionals and decision-makers to meet the needs of older mental health clients. We call for further development of knowledge on this specific topic. (shrink)

Introduction: The high degree of religious/spiritual involvement that brings meaning and purpose to a patients’ life, especially when they are weakened by pain, is among the various reasons to consider the spiritual dimension in clinical practice. This involvement may influence medical decisions and, therefore, should be identified in the medical history of a patient.Objective: To verify the opinion of undergraduate medical students of the Paulista School of Medicine – Federal University of São Paulo regarding the use of a patient’s (...) Spirituality/Religiosity as a therapeutic resource in clinical practice.Method: Quantitative approach of the transversal analytical observational type. The sample was composed of academics’ medical program, from the first to the sixth year, regularly enrolled in 2017. Data collection was performed with a standardized questionnaire divided into three sections: sociodemographic profile; Duke University Religious Index; Spirituality/Religiosity in the clinical and academic context.Results: Participated in the survey 72% of the enrolled students, of which 61.4% had religious affiliation, 26.2% declared themselves agnostic and 12.4% atheists. All of them proposed to answer questions about the insertion of Spirituality/Religiosity in the patient care process. Through the Duke Religiosity Index, we evaluated the importance of religiosity in the student’s personal life and the pertinence of religiosity as a therapeutic insertion for medical treatment. Regarding the clinical and academic context, most participants considered relevant the proposition of didactic-pedagogical actions in medical education related to the spiritual dimension of the patient.Conclusion: We conclude, through our research, that the insertion of the Spirituality/Religiosity of the patient as a therapeutic resource in clinical practice is feasible for most undergraduate students in Medicine of the Escola Paulista de Medicina – Universidade Federal de São Paulo. The result of the research, although it shows only the opinion of medical students at a Brazilian university, indicates that Spirituality/Religiosity is already part of the contemporary medical universe. (shrink)

Cet article commence par examiner trois justifications épistémiques de la démocratie, proposées par José Luis Martí, David Estlund et Hélène Landemore. Tous trois cherchent à montrer en quoi la démocratie possède une tendance à engendrer des décisions correctes, mais font face au risque de légitimer une organisation technocratique du politique, en contradiction avec le principe d’égalité politique. Ils estiment donc que l’argument épistémique ne peut pas suffire à justifier des institutions démocratiques. Cependant, si l’on comprend la valeur «épistémique» d’une (...) décision politique à la fois d’un point de vue factuel et normatif, c’est-à-dire qu’on considère à la fois sa rationalité et son impartialité, une justification épistémique de la démocratie beaucoup plus robuste émerge. C’est cette dernière qui est explorée et défendue dans la seconde partie de cet article. (shrink)

The tendency towards an increasing integration of the informational web into our daily physical world (in particular in so-called Ambient Intelligent technologies which combine ideas derived from the field of Ubiquitous Computing, Intelligent User Interfaces and Ubiquitous Communication) is likely to make the development of successful profiling and personalization algorithms, like the ones currently used by internet companies such as Amazon , even more important than it is today. I argue that the way in which we experience ourselves necessarily goes (...) through a moment of technical mediation. Because of this algorithmic profiling that thrives on continuous reconfiguration of identification should not be understood as a supplementary process which maps a pre-established identity that exists independently from the profiling practice. In order to clarify how the experience of one’s identity can become affected by such machine-profiling a theoretical exploration of identity is made (including Agamben’s understanding of an apparatus , Ricoeur’s distinction between idem - and ipse -identity, and Stiegler’s notion of a conjunctive–disjunctive relationship towards retentional apparatuses ). Although it is clear that no specific predictions about the impact of Ambient Intelligent technologies can be made without taking more particulars into account, the theoretical concepts are used to describe three general scenarios about the way wherein the experience of identity might become affected. To conclude, I argue that the experience of one’s identity may affect whether the cases of unwarranted discrimination resulting from ubiquitous differentiations and identifications within an Ambient Intelligent environment, will become a matter of societal concern. (shrink)

Dans cet article je propose la double-thèse : du caractère « vague » (tel que défini dans la littérature logico-sémantique contemporaine) de la notion de hasard (chance) par opposition au caractère « non-vague » de celle d’aléatoire (randomness) ; du lien entre la vagueness et le pouvoir explicatif du hasard et la non-vagueness et la capacité descriptive de l’aléatoire, lequel plaide en faveur d’usages distincts de ces deux notions. Pour défendre la première thèse, j’ai recours aux définitions des notions de (...) hasard et d’aléatoire et à un exemple de l’histoire des sciences (la théorie du chaos). Pour appuyer la seconde, je fais appel à des exemples scientifiques : la variation dans la théorie darwinienne de l’évolution, la mutation génétique dans la synthèse moderne et la dérive génétique dans la théorie neutraliste de l’évolution. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

Diabetic ketoacidosis is a serious, medical emergency that can be fatal but treatable, we aimed to evaluate the clinical profile of patients admitted with diabetic ketoacidosis. This case series study enrolled 213 non-pregnant adult and adolescent patients admitted with diabetic ketoacidosis at Tripoli Diabetes Hospital from January to September 2023. Demographic data, clinical characteristics, laboratory findings, precipitating factors, and patient outcomes were extracted from medical records and analyzed. Type 1 diabetes mellitus was present in 187 (87.8%) of (...) class='Hi'>patients, the age range 11-84 years, (30.26±13.28), with 130 patients ≤30 years old (61.0%), females accounting for 110 of the patients (51.6%), 109 had a diabetes duration of less than 10 years (51.2%). The most common precipitating factor was insulin omission 92 (43.2%) in patients with known diabetes mellitus, whereas, diabetic ketoacidosis as the first presentation of diabetes mellitus in 24 patients (11.7%), systolic blood pressure ranged 50-160 mmHg (112.82±16.19), diastolic blood pressure varied 30-100 mmHg (70.24±11.32). Plasma glucose at presentation ranged 183-1494 mg/dl (462.92±169.85), with Eu-glycemic diabetic ketoacidosis 100-249 mg/dl were in nine patients (4.2%), whereas most of cases (135 patients, 63.4%) present with plasma glucose 250-500 mg/dl, while hyperosmolar status (≥701 mg/dl) were present in 13 patients (6.1%). Venous pH varied from 6.7-7.42 (7.13±0.14), 132 (62.0%) patients presented with pH <7.24, while severe acidosis was pH < 7 in 32 of patients (14.6%), serum bicarbonate with 10.93±4.95, severe (<5 mmol) in 91 patients (42.7%) and moderate (5-10 mmol) were in 79 patients (37.08%). The mean length of hospital stay was 3.33 days, with an average of 2.11 days spent in the high-dependent unit. Serum potassium varied from 2.4-6.7 meq/L with 3.66± 0.63, most common complications of diabetic ketoacidosis treatment were hypokalemia observed in 82 (35.7%) of cases, and hypoglycemia was detected in 41 patients (19.2%). 170 patients were discharged in good condition (79.8%), and 17.8% of patients were transferred to another hospital to receive further management for co-morbid diseases with diabetes after controlling their hyperglycemic crises. The majority of patients presented with the critical status of diabetic ketoacidosis. The findings emphasize the importance of patient education about prevention measures prompt presentation to the hospital, and clinicians' awareness for early and aggressive treatment of hyperglycemic crises. (shrink)

In France, the Kouchner law of 2002 has allowed for a rethinking of patients’ rights; as well, it introduced the notion of health democracy. For example, in oncology, advocacy groups for patients and ex-patients now provide support and information to patients, representation of patients in health care institutions and state agencies, education to caregivers, and opportunities for participation in research. In fact, such advocacy groups have been so impactful that some patients have gone on (...) to work in the health care system itself; it is this rise in professionalism that is of interest in this article, where we will discuss the first results of two ongoing research projects on the subject. (shrink)

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn (...) more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After the (...) Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (shrink)

From the perspective of Analytical Thomism, we show that astonishment is a cognitive emotion by which we can inquire into the cause of the effects at which we are astonished. Like Descartes after him, Thomas Aquinas remarks, however, that not all astonishment is good. It is therefore up to consider the epistemic virtues by requested we will be able to live a legitimate astonishment. We distinguish three: one by intellectual attention which causes astonishment; on the other hand, the intellectual docility (...) which directs it; and finally the intellectual benevolence which preserves it. (shrink)

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or less standard. (...) While PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs. (shrink)

BackgroundBrazil is among the sixteen countries that conducts the most clinical trials in the world. It has a system to review research ethics with human beings made up by the National Commission on Research Ethics and 779 Research Ethics Committees, in 2017. The RECs are supposed to follow the same rules regarding their membership, although the RECs that review Social Science and Humanities researches must respect Resolution 510/16. There are Brazilian RECs that review SSH and clinical trials. This study aimed (...) to analyze the academic professional profile of the members of the CONEP and Brazilian RECs, their adequacy to the norms, and the challenges faced by the REC’s Chairs to compose their membership. MethodsAll 779 Brazilian RECs’ chairs are invited to fill in a questionnaire informing academic and professional background of the RECs members, and 92 answered. However, eight were excluded for having sent an incomplete questionnaire, leaving a total of 84 participants. The variables were described by absolute and relative frequency. The Chi-square test and ANOVA was used to analyze regional differences related difficulties to compose the committee. The significance level was 95%. ResultsThe results showed a predominance of members from the biomedical area, while 33% were members of the Social Sciences and Humanities and 5.5% were community representatives. As for the academic degree, there were PhD and masters. The divergences in relation to the guidelines result from the difficulties of having participants in some areas and the little interest in the work carried out by the committees.ConclusionThe RECs are partially adequate to the norms and their performance may be compromised by the low participation of community representatives. The organization of REC’s specifics to review biomedical research could improve the ethical review process, ensuring a membership more qualified for these protocols. (shrink)

In many countries patient involvement is high on the healthcare policy agenda, which includes patient representation in collective decision-making. Patient organizations are generally considered to be important representatives of patients. Other actors also claim to represent patients in decision-making, such as politicians, healthcare professionals, and client advisory councils. In this paper we take a broad view of patient representation, examining all the actors claiming to represent patients in the Dutch debate on the decentralization of care. We conclude (...) that variety in forms of representation could help do justice to the variety of patient preferences. In addition we conclude that in order to ensure the democratic quality of patient representation, actors making representative claims have to reflect on how their claims relate to each other and how they can ensure authorization and accountability in the representative relationship with those they claim to represent. (shrink)

In order to fight massive vandalism the English- language Wikipedia has developed a system of surveillance which is carried out by humans and bots, supported by various tools. Central to the selection of edits for inspection is the process of using filters or profiles. Can this profiling be justified? On the basis of a careful reading of Frederick Schauer’s books about rules in general (1991) and profiling in particular (2003) I arrive at several conclusions. The effectiveness, efficiency, and risk-aversion of (...) edit selection all greatly increase as a result. The argument for increasing predictability suggests making all details of profiling manifestly public. Also, a wider distribution of the more sophisticated anti-vandalism tools seems indicated. As to the specific dimensions used in profiling, several critical remarks are developed. When patrollers use ‘assisted edit- ing’ tools, severe ‘overuse’ of several features (anonymity, warned before) is a definite possibility, undermining profile efficacy. The easy remedy suggested is to render all of them invisible on the interfaces as displayed to patrollers. Finally, concerning not only assisted editing tools but tools against vandalism generally, it is argued that the anonymity feature is a sensitive category: anons have been in dispute for a long time (while being more prone to vandalism). Targeting them as a special category violates the social contract upon which Wikipedia is based. The feature is therefore a candidate for mandatory ‘underuse’: it should be banned from all anti-vandalism filters and profiling algorithms, and no longer be visible as a special edit trait. (shrink)

La supervision individuelle ou en groupe permet à tout thérapeute formé selon les concepts théoriques et l’approche clinique de la psychanalyse de forger ses propres outils. Dans un groupe de supervision, chacun apporte les difficultés sur lesquelles il bute dans la mise en place et le déroulement d’une thérapie. Le groupe réfléchit, dans tous les sens du terme, ce qui permet au thérapeute de percevoir ce qui jusque là lui échappait – qu’il s’agisse du fonctionnement symptomatique des patients entre (...) eux ou de ce qui se passe entre eux et lui lorsque s’éclairent les mouvements du transfert. Le groupe est à la fois environnement sécurisant, structure et appareil de liaison, la groupalité étant une dimension du sujet. Tout se passe comme si l’appareil psychique groupal reprenait à son compte le travail d’élaboration psychique du thérapeute, qui, pour le moment, se plaint de ne plus avoir la capacité de penser. Le superviseur est garant du cadre. De lui dépend également la spontanéité et la qualité des échanges ainsi que le climat de confiance indispensable au plaisir de travailler ensemble dans un rapport de parité. (shrink)

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations. Respecting parent/ patient’s autonomy also means respecting the patient’s wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients’ wishes during the first stages of life and how the principle of patient’s autonomy was handled. The case series has a (...) qualitative retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases. Through the structured EC minutes aspects of patient / parents’ wishes could be identified explicitly. Overall the patient / parents’ wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment. The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not “automatically” fulfil the treatment requests of the patients and parents. (shrink)

This article examines one aspect of the criticism of inauthenticity that can be levelled against the trustworthiness of professional relationships in general and nurse-patient relationships in particular. The overall question is: are such relationships inherently trustworthy or untrustworthy, from the patient’s point of view? The author concludes that, in spite of legitimate grounds for concern, and while it remains true that nurse-patient relationships may be untrustworthy, they are not inherently so for reasons of inauthenticity relating to emotional labour. The arguments (...) used to defend this claim take their force from the idea that different criteria may be needed to assess the authenticity of nurse-patient relationships from those used to evaluate authenticity in ordinary social relationships. The utility of Hochschild’s idea of ‘deep’ acting, as offering a useful model for the management of emotions in nursing, is examined and rejected. (shrink)

The purpose of this paper is to examine the possibilities and limitations of an ethical and practical approach to terminal dehydration. We have argued that dehydration among terminally ill patients offers an important key to a better understanding of the dying process, and that the caregivers' reactions can lead to a deepening of holistic palliative care. This article makes clear that the moral question of terminal dehydration can only be treated by an interdisciplinary approach. Therefore, before studying the question (...) of the most humane course possible, we must first understand the meaning of dehydration and its repercussions for the dying patient. Inspired by an attitude of respect for a good dying process, we have suggested that it is possible to put forward as a general guideline that medical therapy should be progressively reduced when it has been determined that a patient has reached the terminal stage, or is in an irreversible deteriorating process. We describe the critical somatic, social, psychological, moral and spiritual points, which make up an ethical approach to terminal dehydration (TD). In the total care of the irreversibly terminally ill patient, tolerating TD can be an expression of an authentic and caring involvement in the dying patient's welfare. (shrink)

Current report assessed measurement reproducibility and reliability of magnetic resonance spectroscopy (1H-MRS) at 3 Tesla in left and right posterior insular, pregenual and anterior midcingulate subdivisions. 10 healthy male volunteers aged 20 to 30 years were tested on four different days, of which 9 were included in the data analysis. Intra- and inter-subject variability of myo-Inositol (mI), Creatine (Cre), Glutamate (glu), total-Choline (tCho), total-N-acetylaspartate (tNAA) and combined Glutamine-Glutamate (Glx) were calculated considering the influence of movement parameters, age, daytime of measurements (...) and tissue composition. Overall mean intra-subject variability revealed small mean coefficients of variation (CV) across the four regions: 5.3% in aMCC, 6.6% in pgACC, 7.3% in pIL and 8.2% in pIR. For all neurochemicals combined, mean inter-subject variability demonstrated mean CVs of 9.05% (aMCC), 8.84% (pgACC), 10.00% (pIL) and 10.55% (pIR). Head movement, tissue composition and day time revealed no significant explanatory variance contribution suggesting a negligible influence on data. A strong correlation between Cramer-Rao Lower Bounds (CRLB; a measure of fitting errors) and the mean intra-subject CV (r=0.799, p<0.001) outlined the importance of low CRLB in order to obtain robust and finally meaningful 1H-MRS measures. The present findings confirm 1H-MRS as a reliable tool to measure brain neurochemistry in small subregions of the human brain. (shrink)