Expiratory flow limitation (EFL) can occur in mechanically ventilated patients with chronic obstructive pulmonary disease and other disorders. It leads to dynamic hyperinflation with ensuing deleterious consequences. Detecting EFL is thus clinically relevant. Easily applicable methods however lack this detection being routinely made in intensive care. Using a simple mathematical model, we propose a new method to detect EFL that does not require any intervention or modification of the ongoing therapeutic. The model consists in a monoalveolar representation of the respiratory (...) system, including a collapsible airway that is submitted to periodic changes in pressure at the airway opening: EFL provokes a sharp expiratory increase in the resistance Rc of the collapsible airway. The model parameters were identified via the Levenberg-Marquardt method by fitting simulated data on the airway pressure and the flow signals recorded in 10 mechanically ventilated patients. A sensitivity study demonstrated that only 8/11 parameters needed to be identified, the remaining three being given reasonable physiological values. Flow-volume curves built at different levels of positive expiratory pressure, PEEP, during PEEP trials (stepwise increases in positive end-expiratory pressure to optimize ventilator settings) have shown evidence of EFL in three cases. This was concordant with parameter identification (high Rc during expiration for EFL patients). We conclude from these preliminary results that our model is a potential tool for the non-invasive detection of EFL in mechanically ventilated patients. (shrink)

Personal positions and voices of a patient diagnosed with borderline personality disorder and the therapist during long-term psychotherapy were studied aiming to find differences in the patterns formed in these aspects of subjectivity according to the level of elaboration of the change episodes achieved by the patient. This case study considered a stage of qualitative analysis where change episodes of the patient were traced through the Change Episodes Model. Later, through the Model of Analysis of Discursive Positioning (...) in Psychotherapy, the voices and personal positions of the patient and her therapist were identified in each of the change episodes. In the stage of quantitative analysis, dynamic patterns in the voices and personal positions were established, accounting for hypothetical attractors using the Space State Grid technique in each of the three different levels of subjective elaboration that constitute the change episodes. The results established differentiated dynamic patterns in the change episodes, coherent with the patient’s change process, and formation of propositive/reflective specific patterns as the patient evolved in the three different levels of subjective elaboration. The above suggests that a subjective transformation process is displayed, and this is manifested in the different voices and personal positions that emerged as the change episodes evolve. The identified dynamic patterns can be considered nonlinear and emergent subjective exchanges between the patient and the therapist throughout the psychotherapy. (shrink)

PurposeContinuous patient-reported outcomes to identify and address patients’ needs represent an important addition to current routine care. The aim of this study was to identify and determine important dimensions of health-related quality of life in routine oncological care.MethodsIn a cross-sectional qualitative study, interviews and focus groups were carried out and recorded. The interviewees were asked for their evaluation on HrQoL in general and specifically regarding cancer treatment. The material was transcribed and analyzed using qualitative content analysis based on Mayring. (...) The results were reviewed in an expert discussion.ResultsInterviews with patients and clinicians, as well as five focus groups with clinicians were conducted. Initially, nine deductive and two inductive categories on HrQoL were built. Four categories were excluded following the qualitative content analysis because they were hardly or not at all mentioned by participants. Following on from the analysis of the expert discussion, one dimension was added, and two further categories were excluded. The resulting system consisted of six dimensions: emotional health, physical ailments, autonomy, social functionality, dignity, and resources.ConclusionThe identified dimensions of HrQoL in routine oncological care were found to differ from those used in existing HrQoL measurements for patients. Further research is needed to test and evaluate the presented structure in a larger sample of cancer patients to further assess its psychometric properties. (shrink)

Background: The prevalence of diabetes is rising worldwide, especially in poorer nations. It is anticipated to emerge as the sixth main cause of mortality globally by 2030. The factors linked to self-awareness in diabetes patients are still debated.Aim: To identify factors associated with self-awareness among diabetic patients attending Al-Zaher primary health care center (PHCC), Makkah Almukaramah City, Saudi Arabia 2024Methods: A cross-sectional study was performed using a randomized sample of diabetes patients visiting Al-Zaher Primary Health Care Center in Makkah AlMukarramah (...) city. The used questionnaire included demographic information and data on the patient's beliefs and attitudes toward diabetes mellitus (DM). The statistical analysis was conducted using SPSS. A P-value below 0.05 was deemed significant.Results: The study included 523 patients with T2DM in different genders, age categories from 20 to 70 years and education levels. The majority of respondents were married (79.3%). 53.5% of respondents were fully informed of their health conditions, however 52% were not confident in managing their diabetes. 60% of patients stated that regular diabetic follow-up every one to two months would assist in maintaining their health. 50.7% of respondents said there is a significant likelihood of getting diabetic issues in the future. While 50.9% of respondents felt that diabetes may be remedied with medicine, 47% of them thought that those with diabetes would have a shorter lifespan compared to those without the condition. 48% of patients selected meals optimal for their health, whereas 51.6% engaged in exercise at least three times weekly to enhance blood glucose regulation. Nonetheless, 51.1% of them sometimes missed doses of diabetic medicine. The average total score of patients' self-awareness about diabetes mellitus was 6.8±3.9, with a median of 8 (range 1-13).Conclusion: The study found inadequate self- awareness among diabetic patients. Male gender, younger age and high education level are the significant factors associated with high self-awareness toward DM. The study highlights the need for educational programs to improve self-awareness and empower patients, especially females, older individuals, and those with lower education levels, in Saudi Arabia. (shrink)

Twitter integrates with streaming data technologies and machine learning to add new value to healthcare. This paper presented a real-time system to predict breast cancer based on streaming patient’s health data from Twitter. The proposed system consists of two major components: developing an offline building model and an online prediction pipeline. For the first component, we made a correlation between the features to determine the correlation between features and reduce the number of features from the Breast Cancer Wisconsin Diagnostic (...) dataset. Two feature selection algorithms are recursive feature elimination and univariate feature selection algorithms which are applied to features after correlation to select the essential features. Four decision trees, logistic regression, support vector machine, and random forest classifier have been used on features after correlation and feature selection. Also, hyperparameter tuning and cross-validation have been applied with machine learning to optimize models and enhance accuracy. Apache Spark, Apache Kafka, and Twitter Streaming API are used to develop the second component. The best model with the highest accuracy obtained from the first component predicts breast cancer in real time from tweets’ streaming. The results showed that the best model is the random forest classifier which achieved the best accuracy. (shrink)

To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged—and how (...) should they be engaged? Second, which patients are being engaged—and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the “who” question is conceptually prior to the question of “how.”This article focuses attention on the “who” of patient engagement in research. First, we provide background on the rationale for patient engagement, underscoring the importance of ensuring the representativeness of engaged patients. Second, we present what little is known about patients engaged in PCORI‐funded research. Third, we identify and discuss the ethical implications of ways in which current practices of patient identification and recruitment may lead to a lack of representativeness. These practices include reliance on the well‐connected and well‐informed, reliance on patients who are not well trained or well‐informed, and reliance on patient advocacy organizations. Finally, we consider several strategies for addressing these pitfalls in order to maximize the positive goals of patient engagement. Patient engagement is intended to address the inability of researchers, funders, and others to fully represent patient views and priorities, but without sufficient attention, the patients selected for this role may still leave important gaps. (shrink)

The autonomy of chronic patients in Iranian hospitals is challenged by impaired functioning resulting from chronic illness, a negative image in society, and effects related to hospitalization. Comprehensive interviews and observations of 34 patients, nurses, and physicians were performed to assess the autonomy of chronic patients in Iran. Conceptualization, constant comparison, and the combination of data resulted in the identification of 5 main categories related to autonomy: welcoming paternalism, self-expression, self-proof, shared decision making, and self-determination. Authority scrambling was a (...) central category describing chronic patients’ perceptions of their autonomy during hospitalization. These patients sought to maintain their independence despite serious threats to their autonomy. (shrink)

Caring for unrepresented patients encompasses legal, ethical, and moral challenges regarding decision-making, consent, the patient’s values, wishes, best interest, and the healthcare team’s professional integrity and autonomy. In this article, I consider the impact of the aging population and the effects of the social determinants of health and suggest that without preventive intervention, the number of unrepresented patients will continue to increase. The health, social, and legal risk factors for becoming unrepresented require a multidisciplinary response. Medical-Legal Partnerships (MLPs) bring (...) healthcare and legal professionals together to address risk factors and health-harming legal needs. The article discusses the role of MLPs in identifying at-risk individuals, providing preventive interventions, and providing support. I make recommendations and conclude that proactive MLPs offer a sustainable approach to the ethical challenges in caring for unrepresented patients by providing interventions to prevent individuals from becoming unrepresented. (shrink)

This article reviews the use of implantable radiofrequency identification (RFID) tags in humans, focusing on the VeriChip (VeriChip Corporation, Delray Beach, FL) and the associated VeriMed patient identification system. In addition, various nonmedical applications for implanted RFID tags in humans have been proposed. The technology offers important health and nonhealth benefits, but raises ethical concerns, including privacy and the potential for coercive implantation of RFID tags in individuals. A national discussion is needed to identify the limits of (...) acceptable use of implantable RFID tags in humans before their use becomes widespread and it becomes too late to prevent misuse of this useful but ethically problematic technology. (shrink)

The identification of human rights issues has become more prominent in statements from national and international nursing organisations such as the American Nurses Association and the United Kingdom’s Royal College of Nursing with the International Council of Nursing asserting that human rights are fundamental to and inherent in nursing and that nurses have an obligation to promote people’s health rights at all times in all places. However, concern has been expressed about this development. Human rights may be seen as (...) the imposition of legal considerations for nurses and other healthcare workers to bear in mind, as yet more responsibilities with the consequent fear of litigation. Although a more hopeful scenario is that consideration of human rights is something that is supportive of good practice. If this more hopeful scenario is to be realised, the role of education will be crucial. As with human rights generally, human rights education is a global phenomenon, a practice-orientated expression of the Universal Declaration of Human Rights, and the goal of human rights education is to build a culture of respect and action for human rights for all. However, the nature of human rights has long been contested. A ‘mapping exercise’ of the academic literature on human rights identified ‘four schools’ or ‘ideal types’ that have shaped thinking about human rights. This sets out the conceptual context in which human rights problems are defined and solutions are proposed, which is particularly important for human rights education. However, it also complicates the picture. The different approaches taken by the four ‘types’ would likely lead to different outcomes in terms of human rights education. It is timely to discuss the nature of human rights education and examine its potential for impact on patient care. This will involve identifying the challenges and potential benefits of this approach and analysing the implications for professional practice. (shrink)

Background Informed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in the (...) informed consent process. Methods This qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies. Results Searches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making. Conclusions This qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery. Registration The study protocol was registered on the international prospective register for systematic reviews. (shrink)

Background: Family therapy is considered as the gold standard in treatment of adolescents with anorexia nervosa (AN). Among the different types of family therapy, multi-family therapy (MFT) is increasingly used for treating AN, and shows promising results. In this article, our focus relied on the patients’ and their parents’ perceptions of the effectiveness and the underlying mechanisms of the MFT. Methods: The present pilot exploratory qualitative study included two focus groups conducted using a semi-structured approach: one with the adolescents (n= (...) 3), and another with one or two of their parents (n= 4 mothers;n= 2 fathers). The subjects discussed were the changes observed in both AN symptoms and family interactions following therapy, and the mechanisms underlying these changes. We crossed the perspectives of the adolescents and of the parents on these two points. Results: Qualitative analysis revealed that while both adolescents and parents had difficulties relating the changes they observed in the last year to MFT, they were able to say that the group cohesion had several positive effects and that their family dynamics had improved. In the light of analysis the adolescents perceived more improvements related eating disorders symptoms than their parents did, while parents were concerned about a negative effect of MFT on their children. Discussion: While both patients and parents perceived improvements in both AN symptoms and family interactions in the past year, it was not clear if they considered MFT to have led to these improvements. FG also explored the MFT mechanisms underlying changes. Both adolescents and their parents stressed the beneficial effects of identification to others members of the group and shared experience to overcome social isolation. Parents also mentioned the sympathy they felt for each other. The idea that they give a central place to families in the therapy was also described by the families. (shrink)

BackgroundPsychological distress is common among infertility patients. Total scale scores are often used to represent the severity of anxiety, depression, or stress, which ignores important differences between specific symptoms, and relationships between symptoms. This study aimed to identify patterns of psychological distress experienced by infertility patients and to identify the most central symptoms of anxiety, depression, and stress.MethodFrom June to September 2016, 740 infertility patients were included in this cross-sectional study. Infertility patients were asked to complete the Generalized Anxiety Disorder-7, (...) Patients Health Questionnaire-9 (PHQ-9), and Fertility Problem Inventory. Network analysis was used to examine the patterns of psychological distress in infertility patients and to test the most central symptoms of anxiety, depression, and stress.ResultsRestlessness was the most central symptom in infertility patients. “Feelings of guilt” had the highest strength among PHQ-9 symptoms. “Relationship concern stress” and “sexual concern stress” had the strongest connections in the network. Stability estimation indicated that the order of node strength centrality was more stable than the order of closeness and betweenness (the CS-coefficients were 0.75, 0.13, and 0.67, respectively). In addition, network structure and global strength were invariant across gender.LimitationsThe cross-sectional design did not permit identification of causal relationships. Patients in this study were recruited from one reproductive hospital; especially, most patients had low socioeconomic status, which limits generalizability of the findings.ConclusionThis study reinforces the need to better understand the underlying causes of psychological distress in infertile patients. A more detailed investigation of the relationship between these symptoms could provide information for psychosocial interventions aimed beyond “alleviating psychological distress.” We should consider the individual psychological symptom pattern and its potential causes in infertility patients instead of assuming a consistent psychological distress structure. (shrink)

How exactly does a patient succeed in imposing a phantasy and its corresponding affect upon his analyst in order to deny it in himself is a most interesting problem… In the analytic situation, a peculiarity of communication[s] of this kind is that, at first sight, they do not seem as if they had been made by the patient at all. The analyst experiences the affect as being his own response to something. The effort involved is in differentiating the (...) patient's contribution from his own. 1My title, 'Understanding Projective Identification,' is intentionally ambiguous. In this paper, I aim both to show how the psychoanalyst comes to understand what the patient is trying to communicate in projective... (shrink)

Cancer is fast becoming an alarming cause of human death. However, it has been reported that if the disease is detected at an early stage, diagnosed, treated appropriately, the patient has better chances of survival long life. Machine learning technique with feature-selection contributes greatly to the detecting of cancer, because an efficient feature-selection method can remove redundant features. In this paper, a Fuzzy Preference-Based Rough Set (FPRS) blended with Support Vector Machine (SVM) has been applied in order to predict (...) cancer biomarkers for biological and gene expression datasets. Biomarkers are determined by deploying three models of FPRS, namely, Fuzzy Upward Consistency (FUC), Fuzzy Downward Consistency (FLC), and Fuzzy Global Consistency (FGC). The efficiency of the three models with SVM on five datasets is exhibited, and the biomarkers that have been identified from FUC models have been reported. (shrink)

Burnout has been recognized as a serious health problem. In Portugal, before COVID-19 Pandemic, there were strong indicators of high prevalence of burnout in physicians and nurses. However, the Portuguese Health Care Service was able to efficiently respond to the increased demands. This study intends to understand how psychosocial variables might have been protective factors for burnout in physicians and nurses in Portugal. Specifically, we considered several psychosocial variables that have been found to be protective factors for burnout in previous (...) research and we compared their predictive and unique impact in the prediction of burnout. These variables are perceptions of justice (distributive, procedural, justice from colleagues, justice from patients, and their families), professional identification, meaningful work and empathy. We also included workload, as a risk factor, and controlled other variables that can be confounds for burnout, such as socio-demographic variables, ideological variables (religiosity, political orientation), and specific variables related with COVID-19 pandemic. The sample of the present study is composed by 229 physicians (aged between 23 and 70 years old,M= 36.54;SD= 10.72; 48% male and 52% female) and 268 nurses (aged between 22 and 69 years old,M= 34.96;SD= 9.52; 27% male and 73% female). An online survey was created using Qualtrics and participants were recruited via Facebook and LinkedIn. The data were collected during 29 days (between the 45th and the 74th days after the first diagnosed case of COVID-19 in Portugal). The results showed that workload was a significant risk factor, except for disengagement in physicians. The most consistent protectors across samples were procedural justice (for both dimensions of burnout, both in physicians and nurses) and professional identification (for disengagement, both in physicians and nurses; for exhaustion only in physicians). This study suggests that decreasing workload and promoting procedural justice and professional identification are key factors that might be simultaneously and independently addressed in interventions for reducing the risk of burnout or preventing it from occurring in the first place. (shrink)

The purpose of this article is to discuss the ethical issues impacting the phenomenon of patient safety and to present implications for nursing management. Previous knowledge of this perspective is fragmented. In this discussion, the main drivers are identified and formulated in ‘the ethical imperative’ of patient safety. Underlying values and principles are considered, with the aim of increasing their visibility for nurse managers’ decision-making. The contradictory nature of individual and utilitarian safety is identified as a challenge in (...) nurse management practice, together with the context of shared responsibility and identification of future challenges. As a conclusion, nurse managers play a strategic role in patient safety. Their role is to incorporate ethical values of patient safety into decision-making at all levels in an organization, and also to encourage clinical nurses to consider values in the provision of care to patients. Patient safety that is sensitive to ethics provides sustainable practice where the humanity and dignity of all stakeholders are respected. (shrink)

Documenting capacity assessments and identifying substitute decisionmakers in healthcare facilities is ethically required for optimal patient care. Lack of such documentation has the potential to generate confusion and contention among patients, their family members, and members of the healthcare team. An overview of our research at the Ottawa Hospital and issues that influence the consistency of documentation in the Canadian context are presented here, as well as ideas for the mitigation of these issues and ways to encourage better documentation.

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

Our aim was to study how nurses interpret patient autonomy in end-of-life decision making. This study built on our previous quantitative study, which evaluated the experiences of and views on end-of-life decision making of a representative sample of Finnish nurses taken from the whole country. We performed qualitative interviews with 17 nurses and analysed these using discourse analysis. In their talk, the nurses demonstrated three different discourses, namely, the ‘supporter’, the ‘analyst’ and the ‘practical’ discourses, each of which outlined (...) a certain position for patients and relatives, and a certain identity for the nurses in end-of-life decision making. The nurses’ talk showed notable differences when compared with that of physicians, highlighting the differences that take place in respect of the image of a person’s work, professional culture, professional identification and responsibilities. An important finding was that the nurses often described their participation in end-of-life decision making in terms of indirect influence. (shrink)

In this study, we investigate the use of narrative in online conversations among persons suffering from chronic opiate addiction and evaluate both its positive and negative uses. Illness narratives, as argued by sociologist Arthur Frank and psychiatrist/medical anthropologist Arthur Kleinman, enable patients to give order to life experiences and receive support from others. We wished to explore under what circumstances online support coalesces and breaks apart. The narratives we examined exemplify two topics frequently discussed on the message board: the recovery (...) process and what it means to be ‘clean’. To better understand these narratives from a theoretically based approach, we used the work of rhetorical theorist Kenneth Burke. Burke's description of two human motives, suffering and perfection, led us to an understanding of how unification and division happened within the online community. We found that the recovery narrative primarily embodied the author's suffering and, consequently, received support from other members of the message board. The second narrative centered on what it means to be ‘clean’ through a discussion of the author's desire to court temptation, revealing what Burke calls the rotten nature of perfection. As a result, the author of the narrative provoked disagreements and did not receive support. (shrink)

Background: It has been reported that type 2 diabetes is associated with olfactory identification impairments and cognitive decline. However, the relationship between OI impairments and cognitive decline is largely unknown in T2DM patients.Methods: Sixty-eight T2DM patients and 68 healthy controls underwent 3D-T1 MRI scans, olfactory and cognitive assessments. The cortical thickness of olfaction-related brain regions, olfactory and cognitive scores were compared between groups. Correlation analyses were carried out among cognition, olfaction, and cortical thickness of olfaction-related brain regions.Results: First, the (...) cognitive and olfactory test scores of T2DM patients were lower than healthy subjects. Second, higher olfactory scores were associated with increased cortical thickness in the left parahippocampal gyrus and bilateral insula in T2DM. Third, higher olfactory scores were associated with higher cognitive performance in T2DM. Fourth, some cognitive performances were related to cortical thickness in the left parahippocampal gyrus and left insula in T2DM.Conclusion: These findings indicated that olfactory dysfunction may be useful for future applications that attempt to predict cognitive decline or develop tailored therapies in T2DM patients. (shrink)

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption (...) is best regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights (the right to life). But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

ABSTRACT A key selling point of pharmacogenetics is the genetic stratification of either patients or diseases in order to target the prescribing of medicine. The hope is that genetically ‘tailored’ medicines will replace the current ‘one‐size‐fits‐all’ paradigm of drug development and usage. This paper is concerned with the relationship between difference and justice in the use of pharmacogenetics. This new technology, which facilitates the identification and use of difference, has, we shall argue, the potential to lead to injustice either (...) by the inappropriate use of difference or through the inappropriate failure to use difference. We build on empirical data from a detailed study of the range of options for the development of pharmacogenetics to present a consideration of the ethical issues that surround patient and disease stratification. In it we explore the ways in which the use of pharmacogenetics may lead to the creation of new, genetically stratified, forms of difference and new forms of injustice based on these divisions. We also examine the ways in which existing forms of difference and social stratification may interact with the use of pharmacogenetics. In conclusion, we suggest how an understanding of these ethical issues could usefully inform future policy discussions. (shrink)

Medical decision making often utilizes subjective observations to arrive at concrete judgments. The decisions frequently affect who receives scarce medical treatments and, thus, who lives or dies. In this paper, a model health status index is described. It is specific for the problem of choosing patients for hemodialysis or transplantation. Such a health status index may be designed for any medical decision involving such issues as drug treatment priorities, identification of salvageable patients, and selection of patients for scarce medical (...) treatment. This index (1) incorporates a physician''s own medical criteria and values, (2) can be modified as the data base improves, (3) assures consistency from decision to decision, and (4) can be developed and used without the help of a mathematician or computer. (shrink)

Because our actions change, our responsibility is modified; because our responsibility is modified, we need to question the ethics of the action. Our action is situated right there between announcing a diagnosis, the theoretical and practical result of identification, the determining and naming of a fact and voicing the disease which is a human action where medical and technical expertise comes up against a life and its story. Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease, is a degenerative disease (...) of the motor neurons leading to paralysis. In the absence of any curative treatment, the natural course always results in death. Since 1989, progress in the management of this disease in France has been exponential, resulting in the creation of 17 expert centres throughout the country in 2003. Guidelines have been drawn up through consensus conferences and coordination meetings. For the delicate stage of the announcement, three requirements have been adopted: the quality of receptiveness of the medical practitioner and his team, their ability to listen and to adapt to the particularities of the patient in their care; their commitment with regard to legal obligations as to how and to whom to transmit information; and the need for a multidisciplined approach to be able to rapidly support the patient and his family. Questioning in the field of applied ethics has led us to examine whether having a benevolent and non-harmful attitude towards these patients, respecting their autonomy and legal rights are parameters required in this specialized practice. Through a transversal thematic analysis of the experiences of the medical practitioners at the Centres, we would like to explore a hypothesis of the remarkable epistemological progression of the neurologist in this form of care in the pure Hippocratic tradition. Through the compassionate experience of the other by these committed doctors and their teams, we will try to outline the view of anthropological phenomenology with regard to the ALS patient, their awareness of the future paralysis of the body that is being announced, their awareness of the temporality and will characteristic of the ALS patient and of his finality that they will be accompanying. (shrink)

BackgroundThis manuscript presents a framework to guide the identification and assessment of ethical opportunities and challenges associated with electronic patient records (EPR). The framework is intended to support designers, software engineers, health service managers, and end-users to realise a responsible, robust and reliable EPR-enabled healthcare system that delivers safe, quality assured, value conscious care.MethodsDevelopment of the EPR applied ethics framework was preceded by a scoping review which mapped the literature related to the ethics of EPR technology. The underlying (...) assumption behind the framework presented in this manuscript is that ethical values can inform all stages of the EPR-lifecycle from design, through development, implementation, and practical application.ResultsThe framework is divided into two parts: context and core functions. The first part ‘context’ entails clarifying: the purpose(s) within which the EPR exists or will exist; the interested parties and their relationships; and the regulatory, codes of professional conduct and organisational policy frame of reference. Understanding the context is required before addressing the second part of the framework which focuses on EPR ‘core functions’ of data collection, data access, and digitally-enabled healthcare.ConclusionsThe primary objective of the EPR Applied Ethics Framework is to help identify and create value and benefits rather than to merely prevent risks. It should therefore be used to steer an EPR project to success rather than be seen as a set of inhibitory rules. The framework is adaptable to a wide range of EPR categories and can cater for new and evolving EPR-enabled healthcare priorities. It is therefore an iterative tool that should be revisited as new EPR-related state-of-affairs, capabilities or activities emerge. (shrink)

In the United States, approximately 2.53 million people sustain a concussion each year. Relative to adults, youth show greater cognitive deficits following concussion and a longer recovery. An accurate and reliable imaging method is needed to determine injury severity and symptom resolution. The primary objective of this study was to characterize concussions with diffusion tensor imaging. This was performed through a normative Z-scoring analysis of DTI metrics, fractional anisotropy, axial diffusivity, and radial diffusivity, to quantify patient-specific injuries and identify (...) commonly damaged brain regions in paediatric concussion patients relative to healthy controls. It was hypothesized that personalizing the detection analysis through normative Z-scoring would provide an understanding of trauma-induced microstructural damage. Concussion patients were volunteers recruited from the Emergency Department of the McMaster Children’s Hospital with a recent concussion, 9 males and 17 females, mean age 14.22 ± 2.64, while healthy paediatric brain DTI datasets were obtained from an MRI data repository. Significant abnormalities were commonly found in the longitudinal fasciculus, fronto-occipital fasciculus, and corticospinal tract, while unique abnormalities were localized in a number of other areas reflecting the individuality of each child’s injury. Total injury burden, determined by the number of regions containing outliers per DTI metric per patient, was used as the metric to quantify the overall injury severity of each patient. The primary outcome of this analysis found that younger patients experienced a significantly greater injury burden when measured using fractional anisotropy. These results show that DTI was able to detect microstructural changes caused by concussion, on a per-person basis, and has the potential to be a useful tool for improving diagnostic accuracy and prognosis of a concussion. (shrink)

Rett syndrome (RTT) is an X‐linked dominant neurodevelopmental disorder affecting almost exclusively girls. Although mutations in methyl‐CpG‐binding protein (MeCP2) are known to be associated with RTT, gene expression patterns are not significantly altered in MeCP2‐deficient cells. A recent study1 identified MeCP2‐mediated histone modification and formation of a higher‐order chromatin loop structure specifically associated with silent chromatin at the Dlx5–Dlx6 locus in normal cells, and its absence thereof in RTT patients. This altered expression of Dlx5 through loss of silent chromatin loop (...) formation provides a molecular mechanism underlying RTT and proposes a novel role for MeCP2 in chromatin organization and imprinting. © 2005 Wiley Periodicals, Inc. BioEssays 27:676–680, 2005. © 2005 Wiley Periodicals, Inc. (shrink)

Confusing clinical standoffs, loyalty to self-destruction and abrupt terminations are challenging and under-examined problems for the modern psychoanalytic practitioner. _The Danger of Change_ is a timely book that addresses the so-called resistant patient so many clinicians are familiar with. Robert Waska blends theory based on Melanie Klein’s classical stance with the more contemporary Freudian/Kleinian school, to demonstrate how to understand patients that are resistant to progress. Divided into four sections, this book covers: reluctant patients and the fight against change: (...) caught between the paranoid and depressive world greed and the dangers of change interruptions to the process of change: loss, envy, and the death instinct working toward change in the face of overwhelming odds Extensive and detailed clinical material is used to bring clarity to subjects including symbolism, conflict resolution, projective identification, the depressive and paranoid positions, change and trust. _The Danger of Change_ brings hope and clarity to cases involving patients who experience progress as a threat to their emotional wellbeing. It will be of great interest to all practising psychoanalysts, as well as those studying psychoanalytic theory and practice. (shrink)

Background Various authorities recommend the participation of patients in promoting patient safety, but little is known about health care professionals' (HCPs') attitudes towards patients' involvement in safety-related behaviours. Objective To investigate how HCPs evaluate patients' behaviours and HCP responses to patient involvement in the behaviour, relative to different aspects of the patient, the involved HCP and the potential error. Design Cross-sectional fractional factorial survey with seven factors embedded in two error scenarios (missed hand hygiene, medication error). Each (...) survey included two randomized vignettes that described the potential error, a patient's reaction to that error and the HCP response to the patient. Setting Twelve hospitals in Switzerland. Participants A total of 1141 HCPs (response rate 45%). Measurements Approval of patients' behaviour, HCP response to the patient, anticipated effects on the patient–HCP relationship, HCPs' support for being asked the question, affective response to the vignettes. Outcomes were measured on 7-point scales. Results Approval of patients' safety-related interventions was generally high and largely affected by patients' behaviour and correct identification of error. Anticipated effects on the patient–HCP relationship were much less positive, little correlated with approval of patients' behaviour and were mainly determined by the HCP response to intervening patients. HCPs expressed more favourable attitudes towards patients intervening about a medication error than about hand sanitation. Conclusions This study provides the first insights into predictors of HCPs' attitudes towards patient engagement in safety. Future research is however required to assess the generalizability of the findings into practice before training can be designed to address critical issues. (shrink)

This article addresses some critical aspects of the relationship between aesthetic medicine (AM) and ethics and proposes a possible deontological ethical line to pursue based on current practices. The role of AM has always been controversial and suffers from unclear practical and moral boundaries, even within academic settings, since it aims to improve the appearance of individuals, not to cure a disease. Today, it is essential and pertinent to discuss these issues, as AM specialists are dealing with a growing and (...) increasingly demanding patient population that has undergone profound evolution in recent years. Current challenges within the field of AM include a lack of global uniformity concerning the education of AM specialists, an increasing number of physicians practicing AM with diverse training backgrounds, the spread of AM being practiced outside of medical practice or hospital settings, and the influence of social media where the success is modelled and dictated by the identification of a youthful appearance). By the field of action enriched by technologies that aim not only at enhancement per se but also at the preservation and regeneration of tissues, it is necessary to establish an active multidisciplinary discussion on the definition of shared ethical limits. This discussion would allow AM to fully reclaim its identity as a specialty that aims to improve patient well-being whilst maintaining respect for patient aesthetic harmony, the expertise of specialists who practice AM, the essential role of safety, and awareness of the importance of a confidential doctor−patient relationship. (shrink)

Delusional misidentification is commonly understood as the product of an inference on the basis of evidence present in the subject's experience. For example, in the Capgras delusion, the patient sees someone who looks like a loved one, but who feels unfamiliar, so they infer that they must not be the loved one. I question this by presenting a distinction between “recognition” and “identification.” Identification does not always require recognition for its epistemic justification, nor does it need recognition (...) for its psychological functioning. Judgments of identification are often the product of a non-inferential mechanism. Delusional misidentification arises as the product of this mechanism malfunctioning. (shrink)

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its (...) problems. Interviews with researchers and clinicians ( n= 19) were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were (a) disappointments with the limits of the current therapy regimen and clinical practice; (b) problematic impacts on physician–patient relationship; and (c) an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarker's sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures. (shrink)

Background: The families of brain-dead patients have a significant role in the process of decision making for organ donation. Organ donation is a traumatic experience. The ethical responsibility of healthcare systems respecting organ donation is far beyond the phase of decision making for donation. The principles of donation-related ethics require healthcare providers and organ procurement organizations to respect donor families and protect them against any probable harm. Given the difficult and traumatic nature of donation-related experience, understanding the outcomes of donation (...) appears crucial. Objective: The aim of this study was to explore the outcomes of organ donation for the families of brain-dead patients. Methods: This was a qualitative descriptive study to which a purposeful sample of 19 donor family members were recruited. Data were collected through holding in-depth semi-structured interviews with the participants. Data analysis was performed by following the qualitative content analysis approach developed by Elo and Kyngäs. Findings: The main category of the data was “Decision to organ donation: a challenge from conflict to transcendence.” This main category consisted of 10 subcategories and 3 general categories. The general categories were “challenging outcomes,” “reassuring outcomes,” and “transcending outcomes.” Ethical considerations: The study was approved by the regional ethical review board. The ethical principles of informed consent, confidentiality, and non-identification were used. Conclusion: Donor families experience different challenges which range from conflict and doubtfulness to confidence, satisfaction, and transcendence. Healthcare providers and organ procurers should not discontinue care and support provision to donor families after obtaining their consent to donate because the post-decision phase is also associated with different complexities and difficulties with which donor families may not be able to cope effectively. In order to help donor families achieve positive outcomes from the tragedy of significant loss, healthcare professionals need to facilitate the process of achieving confidence and transcendence by them. (shrink)

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its (...) problems. Interviews with researchers and clinicians (n= 19) were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were (a) disappointments with the limits of the current therapy regimen and clinical practice; (b) problematic impacts on physician–patient relationship; and (c) an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarker's sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures. (shrink)

Objective: To evaluate whether ethics rounds stimulated ethical reflection. Methods: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to stimulate ethical reflection and promote mutual understanding between professions but not to offer solutions. Questionnaires directly before and after rounds were answered by 194 respondents. The analyses were primarily content analysis with Boyd’s framework but were also statistical in nature. Findings: Seventy-six per cent of the respondents reported a (...) moderate to high rating regarding new insights on ethical problem identification, but the ethics rounds did not seem to stimulate the ethical reflection that the respondents had expected (p<0.001). Dominant new insights did not seem to fit into traditional normative ethics but were instead interpreted as hermeneutic ethics. This was illustrated in the extended perspective on the patient and increased awareness of relations to other professions. Regarding insights into how to solve ethical problems, the request for further interprofessional dialogue dominated both before and after rounds. Conclusion: The findings show the need for interprofessional reflective ethical practice but a balance between ethical reflection and problem solving is suggested if known patients are discussed. Further research is needed to explore the most effective leadership for reflective ethical practice. (shrink)

Background: Informed consent for genetic tests is a well-established practice. It should be based on good quality information and in keeping with the patient’s values. Existing informed consent assessment tools assess knowledge and values. Nevertheless, there is no consensus on what specific elements need to be discussed or considered in the consent process for genetic tests.Methods: We performed a systematic review to identify all factors involved in the decision-making and consent process about genetic testing, from the perspective of patients. (...) Through public databases, we identified studies reporting factors that influence the decision to accept or decline genetic testing. Studies were included if they reported the perspective of patients or at-risk individuals. All articles were thematically coded.Results: 1989 articles were reviewed: 70 met inclusion criteria and 12 additional articles were identified through the references of included studies. Coding of the 82 articles led to the identification of 45 factors involved in decision-making and consent, which were initially divided into three domains: in favor of, against or with an undetermined influence on genetic testing. Each factor was also divided into three subdomains relating to the informed choice concept: knowledge, values or other. The factors in the “other” subdomain were all related to the context of testing (e.g. timing, cost, influence of family members, etc), and were present in all three domains.Conclusions: We describe the network of factors contributing to decision-making and consent process and identify the context of genetic testing as a third component to influence this process. Future studies should consider the evaluation of contextual factors as an important and relevant component of the consent and decision-making process about genetic tests. Based on these results, we plan to develop and test a more comprehensive tool to assess informed consent for genetic testing. (shrink)

Background Coping with end-of-life issues is a major challenge for governments and health systems. Despite progress in legislation, many barriers exist to its full implementation. This study is aimed at identifying these end-of-life barriers in relation to Israel. Methods Qualitative in-depth interviews using professionals and decision makers in the health-care and related systems were carried out, along with two focus groups based on brainstorming techniques consisting of nurses and social workers. Data was managed and analyzed using Naralyzer software. Results Qualitative (...) analysis showed identification of six primary barriers: 1) law, procedures, and forms; 2) clinical aspects; 3) human aspects; 4) knowledge and skills of medical teams; 5) communication; and 6) resource allocation. These were further divided into 44 sub area barriers. Conclusions This study highlights the role of the family doctor in end-of-life by training physicians in decision-making workshops and increasing their knowledge in the field of palliative medicine. Effectively channeling resources, knowledge, and support for medical teams, by accounting for the structure and response of the units for home treatment will improve patient’s access to information on and support for end-of-life laws, as well as reduce legislative barriers in other countries that face the same issues. (shrink)

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. Sharing patients’ and family members’ data collectively raises an ethical tension between the value of datasets and the (...) rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members’ clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants. Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them. (shrink)