The social production of an enterprise clinic: nurses, clinical pathway guidelines and contemporary healthcare practicesIn this paper I critically engage with the forming of contemporary nursing practice with/in an ‘enterprise clinic’ in order to discuss the practical potential of developing a mode of reflective practice that is a critical ontology of self. Critical engagement in the paper is secured through a ‘troubling’ of the relationship between the contemporary practices of both the self and governance, without the reduction of (...) one to the other. The paper draws on my doctoral study in which I combined the techniques of ethnography and discourse analysis in order to critically examine registered nurses’ employment of clinical pathway guidelines through an analysis of the political technologies through which that engagement was constituted. This critical purchase was applied because of the influence of the contemporary ‘problematisation’ of healthcare provision in western society on the formation and deployment of the professional identities of nurses. (shrink)

BackgroundCaregivers may play a fundamental role in the clinical pathway of cancer patients. They provide emotional, informational, and functional support as well as practical assistance, and they might help mediate the interaction and communication with the oncologists when care options are discussed, or decisions are made. Little is known about the impact of dyadic dynamics on patient-doctor communication, patient's satisfaction, or adherence to the therapies. This study protocol aims to evaluate the efficacy of a psychological support intervention on (...) patients-caregivers relationship and their alignment in the treatment decision-making process and estimate related improvement in patient' compliance/adherence to treatments.MethodsA total of 102 patients-caregivers' dyads will be involved, among breast and prostate cancer patients. The study entails a pre- post- evaluation through psychological questionnaires, with a randomization of participants in two conditions, the experimental one in which subjects participate in a psychological support consultation, and the control one, where dyads do not receive any intervention. A follow up after 6 months from the enrollment is planned.DiscussionA positive impact of the psychological support intervention on patients' anxiety, depression, distress, and perceived social support is expected. Such improvements can directly affect patients' satisfaction and adherence to treatments. Data gathered from this study may inform health care providers, policy makers, and public health managers about the importance of caregiver's involvement in the cancer care pathway, and the best way to manage it. A further impact is to develop a specific intervention protocol to support caregivers' involvement in cancer care pathway, improve patient's wellbeing, the interaction with physicians and the compliance with the cancer treatment. (shrink)

Criticisms of the traditional clinical research pathway and its extensive oversight often focus on proposals for deregulation or assert that as in clinical treatment, clinical research should always offer benefit to patient-subjects. Proponents of medical innovation take a different, middle path, arguing that innovation is distinguishable from both research and treatment. This article considers this third pathway by examining stem cell-based innovation.Stem cell-based medical innovation is one pathway toward clinical translation. In fact, such (...) an approach was taken in developing umbilical cord blood transplantation, which is now widely viewed as a safe and effective means for treating a range of malignant and non-malignant conditions. While the Guidelines for the Clinical Translation of Stem Cells created by the International Society for Clinical Research provide an approach to clinical translation that involves “responsible innovation” as an alternative to clinical research, there are at least four sets of unanswered questions regarding the use of an innovation pathway in this context that warrant careful attention. (shrink)

Sight is undoubtedly the most crucial sense, and accidents resulting in its loss are a significant tragedy for individuals. The scientific community embarked on a journey of scientific innovation i...

BackgroundWhether and how to disclose genomic findings obtained in the course of genomic clinical practice and medical research has been a controversial global bioethical issue over the past two decades. Although several recommendations and judgment tools for the disclosure of genomic findings have been proposed, none are sufficiently systematic or inclusive or even consistent with each other. In order to approach the disclosure/non-disclosure practice in an ethical manner, optimal and easy-to-use tools for supporting the judgment of physicians/researchers in genomic (...) medicine are necessary.MethodsThe bioethics literature on this topic was analyzed to parse and deconstruct the somewhat overlapping and therefore ill-defined key concepts of genomic findings, such as incidental, primary, secondary, and other findings. Based on the deconstruction and conceptual analyses of these findings, we then defined key parameters from which to identify the strength of duty to disclose (SDD) for a genomic finding. These analyses were then applied to develop a framework with the SDD matrix and systematic decision-making pathways for the disclosure of genomic findings.ResultsThe following six major parameters (axes), along with sub-axes, were identified: Axis 1 (settings and institutions where findings emerge); Axis 2 (presence or absence of intention and anticipatability in discovery); Axis 3 (maximal actionability at the time of discovery); Axis 4 (net medical importance); Axis 5 (expertise of treating physician/researcher); and Axis 6 (preferences of individual patients/research subjects for disclosure). For Axes 1 to 4, a colored SDD matrix for genomic findings was developed in which levels of obligation for disclosing a finding can be categorized. For Axes 5 and 6, systematic decision-making pathways were developed via the SDD matrix.ConclusionWe analyzed the SDD of genomic findings and developed subsequent systematic decision-making pathways of whether and how to disclose genomic findings to patients/research subjects and their relatives in an ethical manner. Our comprehensive framework may help physicians and researchers in genomic medicine make consistent ethical judgments regarding the disclosure of genomic findings. (shrink)

Following the Second Summit on Human Gene Editing in Hong Kong in 2018, where the birth of two girls with germline genome editing was revealed, the need for a responsible pathway to the clinical application of human germline genome editing has been repeatedly emphasised. This paper aims to contribute to the ongoing discussion on research ethics issues in germline genome editing by exploring key issues related to the initial applications of CRISPR in reproductive medicine. Following an overview of (...) the current discussion on bringing germline genome editing into clinical practice, we outline the specific challenges associated with such interventions and the features that distinguish them from conventional clinical testing of new medical treatments. We then review proposed ethical requirements for initial heritable genome editing, such as the absence of reasonable alternatives, the existence of sufficient and reliable preclinical data, appropriate informed consent, requirements related to safety, and long-term follow-up. (shrink)

Clinical next generation sequencing is a term that refers to a variety of technologies that permit rapid sequencing of large numbers of DNA segments, up to and including entire genomes. As an approach that is playing an increasingly important role in obtaining genetic information from patients, it may be viewed by public and private payers either positively, as an enabler of the promised benefits of personalized medicine, or as “the perfect storm” resulting from the confluence of high market demand, (...) an uproven technology, and an unprepared delivery system. A number of recent studies have noted that coverage and reimbursement will be critical for clinical integration of NGS, yet the evidentiary pathway for payer decision-making is unclear. Although there are multiple reasons for this uncertain reimbursement environment, the situation stems in large part from a long-standing lack of alignment between the information needs of regulators and post-regulatory decision-makers such as payers. (shrink)

Neurofibromatosis type 1 is associated with peripheral and central nervous system tumors. It is noteworthy that the regions in which these tumors frequently arise are the optic pathways and the brainstem. Thus, we decided to trace the procedure of diffusion Magnetic Resonance Imaging alterations along with Short-Wavelength Automated Perimetry examinations of the OPs after surgery and chemotherapy over 1 year, which enabled us to evaluate chemotherapy's efficacy in an NF1 patient with an OP tumor. In this study, a 25-year-old woman (...) with NF1 and left optic radiation glioma underwent surgery to remove the glioma. Immunohistochemistry revealed a Pilocytic Astrocytoma WHO grade I. Post-operation chemotherapy done using nine treatment cycles of administering Temozolomide for 5 days every 4 weeks. Applying the region of interest differential tractography method and SWAP four times every 3 months allowed us to follow the patient's visual acuity alterations longitudinally. The differential deterministic tractography method and statistical analyses enabled us to discover the white matter tracts anisotropy alterations over time. Furthermore, statistical analyses on the SWAP results along time illustrated possible alterations in visual acuity. Then, we could compare and associate the findings with the SWAP examinations and patient symptoms longitudinally. Statistical analyses of SWAP tests revealed a significant improvement in visual fields, and longitudinal differential tractography showed myelination and dense axonal packing in the left OR after 1 year of treatment. In this study, we examined an old hypothesis suggesting that chemotherapy is more effective than radiotherapy for NF1 patients with OP gliomas because of the radiation side effects on the visual field, cognition, and cerebrovascular complications. Our longitudinal clinical case study involving dMRI and SWAP on a single NF1-OPG patient showed that chemotherapy did not suppress the OP myelination over time. However, it should be noted that this is a clinical case study, and, therefore, the generalization of results is limited. Future investigations might focus on genetic-based imaging, particularly in more cases. Further, meta-analyses are recommended for giving a proper Field Of View to researchers as a subtle clue regarding precision medicine. (shrink)

Career transitions in psychiatry have rarely been discussed openly. Yet, in the light of health care reform and other forces affecting clinical practice, it is more important than ever that psychiatrists have information about the career options within their specialty. _Career Pathways in Psychiatry: Transition in Changing Times_ serves that purpose. It explores the professional development and career choices of prominent American psychiatrists, each of whom is identified with a particular career track and many of whom have themselves experienced (...) one or more career transitions. The autobiographical accounts of the contributors survey a wide range of career pathways in psychiatry, including clinical practice, HMO practice, research, administration, entrepreneurism, psychoanalysis, organized medicine, the pharmaceutical industry, public psychiatry, occupational psychiatry, forensic psychiatry, and military psychiatry. These accounts are as engaging as they are informative; their anecdotal nature and conversational tone make for pleasurable reading. References at the end of each chapter serve as recommended reading for those who wish to learn more about specific career options. Intended for psychiatric residents and psychiatrists early in their careers, _Career Pathways in Psychiatry_ will also appeal to their more experienced colleagues, including seasoned clinicians who have contemplated career changes. With a preface summarizing research on career transitions in medicine and numerous chapters shedding light on factors contributing to resistance to change, this book will also be of interest to social scientists, mental health administrators, and professional recruiters. (shrink)

This unique volume is a comprehensive,well-illustrated study of the organization of the white matter pathways of the brain. Schmahmann and Pandya have analyzed and synthesized the corticocortical and corticosubcortical connections of the major areas of the cerebral cortex of the rhesus monkey. The result is a detailed understanding of the constituents of the cerebral white matter and the organization of the fiber tracts. The findings from the 36 cases studied are presented on a single template brain, facilitating comparison of the (...) locations of the different fiber pathways. The summary diagrams provide a comprehensive atlas of the cerebral white matter. The text is enriched by close attention to functional aspects of the anatomical observations. The clinical relevance of the pathways is addressed throughout the text and a chapter is devoted to human white matter diseases. The introductory account gives a detailed historical background. Translations of seminal original observations by early investigators are presented, and when these are considered in the light of the authors' new observations, many longstanding conflicts and debates are resolved. This scholarly book is an important addition to systems and cognitive neuroscience that will be of lasting value to neurobiologists, anatomists, neurologists, neurosurgeons, neuroradiologists, psychiatrists, psychologists, and to their students and trainees. (shrink)

Apoptotic pathways have always been regarded as a key‐player in preserving tissue and organ homeostasis. Excessive activation or resistance to activation of cell death signaling may indeed be responsible for several mechanisms of disease, including malignancy and chronic degenerative diseases. Therefore, targeting apoptotic factors gained more and more attention in the scientific community and novel strategies emerged aimed at selectively blocking or stimulating cell death signaling. This is also the case for the TMEM219 death receptor, which is activated by a (...) circulating ligand, the Insulin‐like growth factor binding protein 3 (IGFBP3) and induces a caspase‐8‐dependent apoptosis of the target cells. Interestingly, stimulation of the IGFBP3/TMEM219 axis exerts an anti‐proliferative effect, while blockade of the TMEM219 deleterious signal protects TMEM219‐expressing cells of the endocrine pancreas, lung, and intestine from damage and death. Here, we summarize the most updated reports on the role of the IGFBP3/TMEM219 apoptotic axis in disease conditions, including intestinal disorders and diabetes, and we describe the advancements in designing and testing novel TMEM219‐based targeting approaches in emerging potential clinical applications. (shrink)

Finding true love is a journey of transformation obstructed by numerous psychological obstacles. _Being in Love_ expands the traditional field of psychoanalytic couple therapy, and explores therapeutic methods of working through the obstacles leading to true love. Becoming who we are is an inherently relational journey: we uncover our truest nature and become most authentically real through the difficult and fearful, yet transformative intersubjective crucibles of our intimate relationships. In this book, Judith Pickering draws comparisons between Bion's concept of becoming (...) in O, and being in love. She searches for pathways that lead away from relational confusion towards the discovery of genuine transformational relationships, and works towards finding better ways of relating to one another. This is achieved by encouraging couples to enjoy the actual presence, humanity, otherness and particularity of each other rather than expecting a partner to conform to our own expectations, projections, desires and presuppositions. Pickering draws on clinical material, contemporary psychoanalysis, cultural themes from the worlds of mythology and literature, and a wealth of therapeutic techniques in this fresh approach to couple therapy. _Being in Love_ will therefore interest students and practitioners of psychoanalysis, psychology, and couple therapy, as well as all of those seeking to be more authentic in their relationships. (shrink)

Current management of people with prolonged disorders of consciousness is failing patients, families and society. The causes include a general lack of concern, knowledge and expertise; a legal and professional framework which impedes timely and appropriate decision-making and/or enactment of the decision; and the exclusive focus on the patient, with no legitimate means to consider the broader consequences of healthcare decisions. This article argues that a clinical pathway based on the principles of the English Mental Capacity Act 2005 (...) and using time-limited treatment trials could greatly improve patient management and reduce stress on families. There needs to be early and continuing use of formal best interests meetings, starting between 7 and 21 days after onset of unconsciousness. The treatment options need to evolve as the clinical state and prognosis becomes more certain. A formal discussion of treatment withdrawal should occur when the upper bound of predicted recovery falls below a level the patient would have considered acceptable, and it should always be discussed when the condition is considered permanent. Any decision to stop treatment should be contingent on a formal second opinion from an independent expert who should review the clinical situation and expected prognosis, but not the best interests decision. The article also asks how, if at all, the adverse effects on the family and the resource implications of long-term care of people left in a prolonged state of unconsciousness should be incorporated in the process. (shrink)

Because the United States has failed to provide a pathway to citizenship for its long-term undocumented population, clinical ethicists have more than 20 years of addressing issues that arise in caring for this population. I illustrate that these challenges fall into two sets of issues. First-generation issues involve finding ethical ways to treat and discharge patients who are uninsured and ineligible for safety-net resources. More recently, ethicists have been invited to help address second-generation issues that involve facilitating the (...) presentation for care of undocumented patients. In the current environment of widespread fear of deportation in the immigrant community, ethicists are working with health care providers to address patient concerns that prevent them from seeking care. I illustrate that in both generations of issues, values implicit within health care, namely, caring, efficiency, and promotion of public health, guide the strategies that are acceptable and recommended. (shrink)

Innovative practice occurs when a clinician provides something new, untested, or nonstandard to a patient in the course of clinical care, rather than as part of a research study. Commentators have noted that patients engaged in innovative practice are at significant risk of suffering harm, exploitation, or autonomy violations. By creating a pathway for harmful or nonbeneficial interventions to spread within medical practice without being subjected to rigorous scientific evaluation, innovative practice poses similar risks to the wider community (...) of patients and society as a whole. Given these concerns, how should we control and oversee innovative practice, and in particular, how should we coordinate innovative practice and clinical research? In this article, I argue that an ethical approach to overseeing innovative practice must encourage the early transition to rigorous clinical research without delaying or deferring the development of beneficial innovations or violating the autonomy rights of clinicians and their patients. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant (...) step on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

Adults who are incapacitated and alone, having no surrogates, may be known as “unbefriended.” Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for “public guardianship” or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the consequences of inadequacies on (...) the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: work to restore capacity; find previously unknown surrogates; work with agencies to obtain surrogates; and access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient’s values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population. (shrink)

The potential of the folic acid biosynthesis pathway as a target for the development of antibiotics has been acknowledged for many years and validated by the clinical use of several drugs. Recently, the crystal structures of all but one of the enzymes in the pathway from GTP to dihydrofolate have been determined. Given that structure‐based drug design strategies are now widely employed, these recent developments have prompted a re‐evaluation of the potential of each of the enzymes in (...) the pathway as a target for development of specific inhibitors. Here, we review the current knowledge of the structure and mechanism of each enzyme in the bacterial folic acid biosynthesis pathway from GTP to dihydrofolate and draw conclusions regarding the potential of each enzyme as a target for therapeutic intervention. BioEssays 24:637–648, 2002. © 2002 Wiley Periodicals, Inc. (shrink)

Attention-deficit/hyperactivity disorder is a neurodevelopmental disorder with a childhood prevalence of 5%. In about two-thirds of the cases, ADHD symptoms persist into adulthood and often cause significant functional impairment. Based on the results of family and twin studies, the estimated heritability of ADHD approximates 80%, suggests a significant genetic component in the etiological background of the disorder; however, the potential genetic effects on disease risk, symptom severity, and persistence are unclear. This article provides a brief review of the genome-wide and (...) candidate gene association studies with a focus on the clinical aspects, summarizing findings of ADHD disease risk, ADHD core symptoms as dimensional traits, and other traits frequently associated with ADHD, which may contribute to the susceptibility to other comorbid psychiatric disorders. Furthermore, neuropsychological impairment and measures from neuroimaging and electrophysiological paradigms, emerging as potential biomarkers, also provide a prominent target for molecular genetic studies, since they lie in the pathway from genes to behavior; therefore, they can contribute to the understanding of the underlying neurobiological mechanisms and the interindividual heterogeneity of clinical symptoms. Beyond the aforementioned aspects, throughout the review, we also give a brief summary of the genetic results, including polygenic risk scores that can potentially predict individual response to different treatment options and may offer a possibility for personalized treatment for the therapy of ADHD in the future. (shrink)

The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for (...) dying people with dementia. This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

Background Stroke causes ethically challenging changes in the lives of individuals with stroke (IwS). However, it is unclear whether the changes are stable or dynamic. In this study, a novel concept ‘ethical pathway’ is used to describe the potential changes in the perceived realisation of IwS’ values in temporal passage post-stroke. Ethical pathway includes three central values of nursing: dignity, privacy and autonomy. Aim of the study was to analyse the perceived ethical pathway of IwS over a (...) non-limited post-stroke period, with the purpose to understand the existence of the IwS’ ethical pathway in theoretical level. Design A descriptive and correlational design. Methods The volunteer participants were recruited via the Finnish Brain Association. Data were collected with questions of background variables and the Ethical Pathway of Individuals with Stroke (EPIS) instrument and analysed statistically. The Ethics Committee of the University approved the study and permission for data collection was obtained from the association. Results Sixty-one IwS participated in the study. The ethical pathway varied during the post-stroke time. Of the values, dignity and privacy were realised lower with longer post-stroke time. The life situational factors were associated with the realisation of the values, but not consistently. (shrink)

This article engages with medical practice to develop a philosophically informed understanding of epistemic engagement in medicine, and epistemic object relations more broadly. I take my point of departure in the clinical encounter and draw on French psychoanalytical theory to develop and expand a taxonomy already proposed by Karin Knorr-Cetina. In so doing, I argue for the addition of an abject-type object relation; that is, the encounter with objects that transgress frameworks and disrupt further investigation, hence preventing dynamic engagement (...) and negatively shaping our epistemic pathways. This article is primarily theoretical, although partly grounded in qualitative fieldwork. (shrink)

Patients’ admission to modern substance use disorder treatment comes with the attendant risk of being discharged from treatment— a widespread practice. This article describes the three mainstream theories of addiction that operate as a reference point for clinicians in reasoning about a decision to discharge a patient from treatment. The extant literature is reviewed to highlight the pathways that patients follow after administrative discharge. Little scientific research has been done to investigate claims and hypotheses about the therapeutic function of AD, (...) which points to the need for empirical ethics to inform clinical addictions practice. (shrink)

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including (...) the type of case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

Making good decisions in extremely complex and difficult processes and situations has always been both a key task as well as a challenge in the clinic and has led to a large amount of clinical, legal and ethical routines, protocols and reflections in order to guarantee fair, participatory and up-to-date pathways for clinical decision-making. Nevertheless, the complexity of processes and physical phenomena, time as well as economic constraints and not least further endeavours as well as achievements in medicine (...) and healthcare continuously raise the need to evaluate and to improve clinical decision-making. This article scrutinises if and how clinical decision-making processes are challenged by the rise of so-called artificial intelligence-driven decision support systems (AI-DSS). In a first step, this article analyses how the rise of AI-DSS will affect and transform the modes of interaction between different agents in the clinic. In a second step, we point out how these changing modes of interaction also imply shifts in the conditions of trustworthiness, epistemic challenges regarding transparency, the underlying normative concepts of agency and its embedding into concrete contexts of deployment and, finally, the consequences for (possible) ascriptions of responsibility. Third, we draw first conclusions for further steps regarding a ‘meaningful human control’ of clinical AI-DSS. (shrink)

Simona Giordano investigates the moral concerns raised by current clinical options available for transgender and gender diverse children and adolescents. From the time young children express gender incongruent preferences and attitudes, up to the time in which older adolescents might apply for medical or surgical treatment, moral questions are likely to be asked: should children be enabled to express themselves freely inside and outside the domestic environment? What are the implications of the choices that parents might make early on? (...) How should clinicians respond to distress around sexual anatomy? Is it ethical to suspend pubertal development? What level of evidence should we seek for medications to be used in paediatric care? What are the risks and benefits of various forms of hormonal treatment? Is it ethical to defer surgical interventions till adulthood? Giordano provides a detailed ethical analysis of these and many other questions that are likely to arise at various stages of a person's life and proposes a moral formula to answer these questions, as well as others, that are likely to arise in a fast-changing landscape. Children and Gender combines a detailed ethical analysis with an accurate clinical description of gender development and available clinical pathways. (shrink)

While the effects of COVID-19 are being felt globally, the pandemic disproportionately affects lower- and middle-income countries (LMICs) by exacerbating existing global health disparities. In this article, we illustrate how intersecting upstream social determinants of global health form a disparity pathway that compromises LMICs’ ability to respond to the pandemic. We consider pre-existing disease burden and baseline susceptibility, limited disease prevention resources, and unequal access to basic and specialized health care, essential drugs, and clinical trials. Recognizing that ongoing (...) and underlying disparity issues will require long-term correction efforts, this pathway approach is nonetheless helpful to inform ethical responses to this global pandemic. It can facilitate international cooperation during the pandemic to reduce the disparate burdens among different regions without imposing significant burden on any particular contributor. The pathway approach allows international stakeholders in various social positions to respond to different components of the pathway based on their respective strengths and resources to help break the cycle of global health inequity. Guided by the ethical principles of relational and pragmatic solidarity, we argue for a coordinated global division of labor such that different stakeholders can collaborate to foster equitable healthcare access during this pandemic. (shrink)

BackgroundThe Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for (...) dying people with dementia.MethodsThis systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science.ResultsThe search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available.ConclusionLCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

This paper builds on previous work that investigated anticancer drugs as ‘informed materials’, i.e., substances that undergo an informational enrichment that situates them in a dense relational web of qualifications and measurements generated by clinical experiments and clinical trials. The paper analyzes the recent transformation of anticancer drugs from ‘informed’ to ‘informing material’. Briefly put: in the post-genomic era, anti-cancer drugs have become instruments for the production of new biological, pathological, and therapeutic insights into the underlying etiology and (...) evolution of cancer. Genomic platforms characterize individual patients’ tumors based on their mutational landscapes. As part of this new approach, drugs targeting specific mutations transcend informational enrichment to become tools for informing their targets, while also problematizing the very notion of a ‘target’. In other words, they have become tools for the exploration of cancer pathways and mechanisms. While several studies in the philosophy and history of biomedicine have called attention to the heuristic relevance and experimental use of drugs, few have investigated concrete instances of this role of drugs in clinical research. (shrink)

Background Although the importance of clinical ethics in contemporary clinical environments is established, development of formal clinical ethics services in the Australia health system has, to date, been ad hoc. This study was designed to systematically follow and reflect upon the first 18 months of activity by a newly established service, to examine key barriers and facilitators to establishing a new service in an Australian hospital setting. Methods: how the study was performed and statistical tests used A (...) qualitative case study approach was utilised. The study gathered and analysed data using observations of service committee meetings, document analysis of agendas and minutes, and semi-structured interviews with committee members to generate semantic themes. By interpreting the thematic findings in reference to national capacity building resources, this study also aimed to provide practice-based reflections for other health agencies. Results: the main findings An overarching theme identified in the data was a strong commitment to supporting clinicians facing difficult patient care decisions and navigating difficult discussions with patients and families. Another key theme was the role of the new clinical ethics support service in providing clinicians with a pathway to raise system-wide issues with the organisation Executive. While there was strong clinical engagement, consumer and community participation remained a challenge, as did unresolved governance issues and a need for clearer policy relationship between the service and the organisation. Conclusions: brief summary and potential implications Considering these themes in relation to the national capacity building resources, the study identifies three areas likely to require ongoing development and negotiation. These are: the role of the clinical ethics support service as a link between the workforce and the Executive; the incorporation of consumers and patients; and ethical reasoning. To improve the effectiveness of the service, it is necessary to increase clarity on the service’s role at the governance and policy level, as well as develop strategies for engaging consumers, patients and families. Finally, the capacity of the service to reflect on complex cases may be enhanced through explicit discussions of various different ethical frameworks and ways of deliberating. (shrink)

As the COVID-19 pandemic impacts on health service delivery, health providers are modifying care pathways and staffing models in ways that require health professionals to be reallocated to work in critical care settings. Many of the roles that staff are being allocated to in the intensive care unit and emergency department pose additional risks to themselves, and new policies for staff reallocation are causing distress and uncertainty to the professionals concerned. In this paper, we analyse a range of ethical issues (...) associated with changes to staff allocation processes in the face of COVID-19. In line with a dominant view in the medical ethics literature, we claim, first, that no individual health professional has a specific, positive obligation to treat a patient when doing so places that professional at risk of harm, and so there is a clear ethical tension in any reallocation process in this context. Next, we argue that the changing asymmetries of health needs in hospitals means that careful consideration needs to be given to a stepwise process for deallocating staff from their usual duties. We conclude by considering how a justifiable process of reallocating professionals to high-risk clinical roles should be configured once those who are ‘fit for reallocation’ have been identified. We claim that this process needs to attend to three questions that we consider in detail: (1) how the choice to make reallocation decisions is made, (2) what justifiable models for reallocation might look like and (3) what is owed to those who are reallocated. (shrink)

The importance of patient involvement is increasing in healthcare, and initiatives are constantly implemented to reach the ideal of involved and educated patients. This secondary analysis was initially embedded in a randomized controlled study where the aim was to gain insight into perceptions and experiences within a group of women undergoing fertility treatment through two focus group interviews. In this secondary analysis, we investigated how patient involvement was strived for in both clinical practice and research. During the analysis, it (...) became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research. Patient involvement in both research and clinical practice has shown to be a challenge and entails that pathways are organized and decisions shared by healthcare professionals. (shrink)

Background There is little evidence of junior trainee perspectives in the design and implementation of medical ethics and law curriculum in UK medical schools.Aim To determine the ethical issues the foundation year 1 doctors encountered during clinical practice and the skills and knowledge of MEL, which were useful in informing MEL curriculum development.Method The National Research Ethics Service gave ethical approval. Eighteen one-to-one interviews were conducted in each school with FY1 doctors.Analysis Interviews were recorded and transcribed verbatim; a thematic (...) analysis was undertaken with the transcriptions and saturation of themes was achieved.Key findings Themes closely overlapped between the two study sites. Knowing my place as an FY1 ; Do not attempt resuscitation)/end-of-life pathway and its implications; ‘You have to be there’ ; and advanced interpersonal skills competency for ethical clinical practice.Conclusions The data provide a snapshot of the real challenges faced by MEL FY1 doctors in early clinical practice: they may feel ill-prepared and sometimes unsupported by senior members of the team. The key themes suggest areas for development of undergraduate and postgraduate MEL curricula. We will work to develop our own curriculum accordingly. We intend to further investigate the applicability of our findings to UK medical ethics and law curriculum. (shrink)

Maria Triassi,1 Elena Giancotti,2 Antonio Nardone,1 Giulia Mancini,3 Fabiana Rubba1 1Public, Preventive and Social Medicine School, University Federico II of Naples, Naples, Italy; 2Procurement and Transplantation Coordination, Naples, Italy; 3Sociology Unit, G D'annunzio University, Chieti-Pescara, Italy Introduction: The growing disparity between organ availability for transplantation and the number of patients in need has challenged the donation and transplantation community to develop innovative processes, ideas, and techniques to bridge this gap. Advances in the sharing of best practices in the donation community (...) have contributed greatly to this aim over the past 5 years. Studies published during the past five years were analyzed to gain insight on the evolving organizational areas and tools that the procurement and transplantation pathways have been focused on. The hypothesis assessed is that networking and efficacious handling of this complex path may be ameliorated by an adaptive organizational toolbox. Methods: A thorough search has been conducted using various databases, ie, Cochrane library, PubMed, EMBASE, Federico II University Open Archive. The evidence was considered following the Effective Practice and Organization of Care Group checklist. Prevalent organizational attitudes and areas were assessed, and various scenarios were analyzed. Initially, all titles and abstracts were screened. In the next phase, the full text of all abstracts considered potentially relevant by at least one of the reviewers was evaluated. Inconsistencies in decision-making within this second phase were solved based on consensus between both reviewers. In this phase, for every study we defined whether the organization was considered relevant and what the scenario was. The information was extracted from each study based on bibliographic details. As many as 1,071 studies were analyzed, and 81 were selected as potentially relevant. Results: We found three prevalent areas of interest focused on organizational elements: global organizational strategies scenario, clinical hospital organization, and citizenship and social scenario. Conclusion: We reached the conclusion that organization has a central role in different scenarios of procurement and transplantation in a continuum from government to hospital and finally among citizens. A standardized hospital pathway definitely remains the essential step in order to ameliorate either procurement or transplantation. Keywords: transplant procurement, management, organizational tool, network. (shrink)

ObjectivesHostile attribution bias is reportedly common from non-clinical population to those with serious mental illness, such as schizophrenia, and is known to be closely related to theory of mind. This study aimed to investigate whether ToM skills mediate the relationship among neurocognitive ability, personality traits, and attribution bias.MethodsA total of 198 non-clinical youths were recruited. To assess their neurocognitive ability and ToM skills, the participants were asked to complete Raven’s Standard Progressive Matrices and the Korean version of the (...) Reading the Mind in Eyes Test. To determine their personality traits, the Eysenck Personality Questionnaire and interpersonal reactivity index were used. To evaluate hostile attribution bias, the Ambiguous Intentions Hostility Questionnaire was administered. Path analysis and bias-corrected percentile bootstrap methods were used to estimate model fit and the parameters of the mediating effects.ResultsBased on model comparison, the best model characterized two direct pathways from psychoticism and the K-RMET to hostility attribution bias and three indirect pathways, wherein SPM, perspective taking, and psychoticism influenced hostile attribution bias through K-RMET. The final model fit indices were good [x2/df = 1.126; comparative fit index = 0.996; root mean square error of approximation = 0.026; standard root mean square residual = 0.026 and Akaike information criterion = 28.251] and the K-RMET fully mediated the association between SPM, perspective taking, psychoticism, and hostile attribution bias.ConclusionThe main findings suggested that ToM skills, such as the RMET, play an important role in explaining the relationship among neurocognitive ability, personality traits, and hostile attribution bias. ToM skills and a remediation strategy may need to be developed to balance the enhanced hostility bias that underlies the paranoia. (shrink)