The paper investigates the epistemological and communicative competences the experts need to use and communicate evidence in the reasoning process leading to diagnosis. The diagnosis and diagnosis communication are presented as intertwined processes that should be jointly addressed in medical consultations, to empower patients’ compliance in illness management. The paper presents defeasible reasoning as specific to the diagnostic praxis, showing how this type of reasoning threatens effective diagnosis communication and entails that we should understand (...) diagnostic evidence as defeasible as well. It argues that metaphors might be effective communicative devices to let the patients understand the relevant defeasors in the diagnostic reasoning process, helping to improve effective diagnosis communication, and also encouraging a change in patients’ beliefs and attitudes on their own experience of illness and illness’ management. (shrink)

Background: When infertility is diagnosed, physicians have the difficult task to break bad news. Their communication skills play a central role in improving patients' coping abilities and adherence to infertility treatments. However, specific guidelines and training courses on this topic are still lacking. The aim of the present study is to provide some practical advice for improving breaking bad news in infertility diagnosis through a systematic literature review of qualitative and quantitative studies. Methods: Electronic searches were performed in (...) the MEDLINE, Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and Psychology and Behavioral Sciences Collection databases. All articles focusing on the communication of the diagnosis of infertility were included. The main findings of each included article were then summarized. Results: Literature search identified 11,838 references that were screened for eligibility. Full texts of 81 articles were retrieved, and their analysis led to the inclusion of 4 articles, which treated the theme of communication of infertility only partially. The main addressed aspects concerning the communication of the infertility diagnosis were the following: the value that patients give to healthcare professionals' communication skills; the importance of giving clear information on diagnostic procedures and treatments in order to decrease patients' anxiety; and the importance of involving both partners. Conclusions: This review pointed out that the communication of the infertility diagnosis is still underinvestigated. Specific guidelines are currently not available, but other protocols could be used. Taking into account the principal aspects of communication highlighted with this review, in this study, we suggested an adaptation of the original SPIKES protocol that could be used by healthcare professionals for the communication of the infertility status. (shrink)

An evaluation of mental capacity is critical to a clinician's judgment about whether or not persons can make medical treatment decisions on their own behalf, and uncertainty about their ability to meaningfully participate in that process is one of the more common reasons an ethics consult is requested. The care of decisionally incapable patients—particularly those who lack advance care documents and no living relative who can speak for them—presents a quandary to healthcare personnel attempting to plan care in their best (...) interest, especially when options are multiple but none are ideal. These situations can be further complicated if involving a patient with a dual diagnosis of mental retardation and mental illness living in a community group home. (shrink)

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor–patient relationship. The study aims to explore the Roma’s beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated (...) in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the “silence conspiracy” being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient’s autonomy. We identified ethical dilemmas concerning autonomy, lack of patients’ real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient’s right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community. (shrink)

Neurodiversity, the advocacy position that autism and related conditions are natural variants of human neurological outcomes that should be neither cured nor normalized, is based on the assertion that autistic people have unique neurological differences. Membership in this community as an autistic person largely results from clinical identification, or biocertification. However, there are many autistic individuals who diagnose themselves. This practice is contentious among autistic communities. Using data gathered from Wrong Planet, an online autism community forum, this article describes the (...) debate about self-diagnosis amongst autistic self-advocates and argues for the acceptance of the practice in light of the difficulties in verifying autism as a ‘natural kind.’ This practice can counteract discriminatory practices towards and within the autistic community and also work to verfiy autistic self-knowledge and self-expertise. This discussion also has important implications for other neurocommunities, neuroethical issues such as identity and privacy, and the emerging field of critical autism studies. (shrink)

This paper has two objectives 1) to study the influence of digital and new technology on COVID-19 diagnosis and healthcare 2) To propose the integral guideline solutions of the infectious disease for the future. COVID-19 stands for corona (CO), virus (VI), disease (D), or SARS-CoV-2, is a respiratory virus first identified in December 2019 in Wuhan, China(WHO, 2019). It is an epidemiological crisis that caused the deaths and sudden destruction of wealth and health of people around the world. Many (...) countries responded to the crisis with what could only be called urgent prevention and treatment. In the 21st century, our society is based on digital and new technology that can control and prevent the COVID-19 pandemics. However, these ways for solving the problem of COVID-19 pandemics are rising an epistemological crisis too. There are some problems with the COVID-19 diagnosis. From Buddhist philosophy perspective, COVID-19 teaches us the coronavirus is causing us to experience some heightened forms of the three marks of our existence which are the impermanence (aniccā), the suffering (duḥkha), and the non-self (anatta). The establishment of scientific expertise and innovation has shown its value and educating the public about testing, diagnosis, communication, treatment, and vaccine development technology for prevention the of infectious diseases in the future. (shrink)

In The Anticipatory Corpse, Jeffrey Bishop claims that modern medicine has lost formal and final causality as the dead body has become epistemologically normative, and that a singular focus on efficient and material causality has thoroughly distorted modern medical practice. Bishop implies that the renewal of medicine will require its housing in alternate social spaces. This essay critiques both Bishop’s diagnosis and therapy by arguing, first, that alternate social imaginaries, though perhaps marginalized, are already present within the practice of (...) medicine. And second, the essay argues that alternate social imaginaries in medicine can be reclaimed not through separatist communities but in the re-narration of conceptually underdetermined practices. Given Bishop’s invitation for theology to engage medicine, this essay then draws from theologian Dietrich Bonhoeffer for the kind of diagnosis and therapy currently needed, concluding with a contemporary example of how an alternate social imaginary is being instantiated in modern medicine. (shrink)

Human beings rely on metaphor as a primary cognitive device for interpreting the world around them. Metaphors figure especially strongly in discourse around health, illness, and medicine. It is not just that patients use metaphors to describe their personal experience of being unwell, or that medical professionals employ metaphor to convey a diagnosis, describe a treatment, or explain the function of an organ to their patients. Metaphor, it is argued, lies at the heart of the process of diagnosis. (...) Moreover, diagnosticians employ competing metaphors in the early stages of diagnosis to speculate on alternative ways of viewing a puzzling set of symptoms. Diagnosis is often defined as a process of ordering and classifying, while metaphor is a device for playing with classifications. The medical systems of different cultures depend on different sets of fundamental metaphors. Modern Western biomedicine is organized around a series of basic metaphors: the body as machine, the body as the site of battle, and the body as a communication system. Traditional Chinese medicine, on the other hand, uses images of flow and blockage, balance and imbalance, and works by analogy with five elements: wood, fire, earth, metal, and water. Psychologists are sometimes able to detect from a patient’s own use of metaphor, or inability to use or recognize metaphor, clues to a diagnosis of psychosis or autism. With conditions such as anorexia nervosa, therapists may actually work to modify the dysfunctional metaphors by which patients depict themselves, with the purpose of establishing positive metaphors for envisaging recovery. (shrink)

In November 2003, researchers at Cambridge University announced they had identified a gene associated with an elevated risk of breast and related ovarian cancers. The gene—christened EMSY in honor of a breast-cancer nurse who is the sister of the study's lead author—is particularly significant because it is linked to so-called sporadic cancers. Such cancers do not arise from hereditary mutations of the BRCA1 and BRCA2 genes, in which genes that ordinarily prevent breast and ovarian cancers are altered, often giving rise (...) to multiple cases of cancer within a family as the mutation is passed along. The Cambridge researchers determined that the presence of extra copies of EMSY in an individual may instead switch off a healthy BRCA2 gene. (shrink)

Chronic disorders of consciousness, particularly the vegetative and the minimally conscious states, pose serious diagnostic challenges to neurologists and clinical psychologists. A look at the concept of “diagnosis” in medicine reveals its social construction: While medical categorizations are intended to describe facts in the real world, they are nevertheless dependent on conventions and agreements between experts and practitioners. For chronic disorders of consciousness in particular, the terminology has proven problematic and controversial over the years. Novel research utilizing functional brain (...) imaging has demonstrated that a substantial number of patients retain their capabilities to communicate by brain activity even when they are incapable of classic verbal and nonverbal responses due to the dysfunction of their motor behavior. Moreover, thorough diagnostic assessments constitute the foundations for suitable rehabilitation measures. Thus, ethical arguments support the claim that the potential of emerging methods for communication via brain activity should be evaluated comprehensively in patients with chronic disorders of consciousness, once the technological methodology for this endeavor progresses to a reliable and affordable stage. (shrink)

Eric Voegelin and Eugen Rosenstock-Huessy provide an interesting and important contrast in their Augustinian diagnoses of modernity and the role of revolution and faith in salvation in history. For Eric Voegelin the desolation of modern humanity springs from its unreal elevation of the self – its Gnostic inheritance – and its immanentization of God and the eschaton into history and progress. In keeping with this is the moderns’ failure to appreciate that the symbolic order required for a fulfilling human community (...) and experience relies upon the necessity of maintaining God as a beyond in relation to society, man and world. Rosenstock-Huessy is also concerned that the failure of the moderns to understand the sign and significance of God is disastrous. And like Voegelin he is deeply opposed to modern Gnosticism and the pathologies that emerge from it, but Rosenstock-Huessy is also interested in something that is not Voegelin’s primary concern – mainly the role of providence in history. (shrink)

The development and implementation of prenataldiagnosis has changed the experience of pregnancy for many women. How women make decisions about prenatal diagnosis PD is an important question that challenges us both individually and as a community. The questionof care is central to many women's decision-making process. How much care a child will require, how much care a woman feels confident to provide, and the level of care available for children with genetic conditionsand families from their communities all impact on (...) women's decisions to undertake prenatal diagnosis as well as how to use the information available from testing. Interviews with women making these decisions explored, among otherthings, the role that caring and access to care played in women's ethical deliberations. Before PD can widen women's reproductive choices and counter criticisms that its use is eugenically oriented, the central role that provision of, and access to, care holds for participants in PD programmes must be acknowledged and addressed. (shrink)

Categorization-based diagnosis, which endeavors to be consistent with the third-person, objective measures of science, is not always adequate with respect to problems concerning diagnostic accuracy, demarcation problems when there are comorbidities, well-documented problems of symptom amplification, and complications of stigmatization and looping effects. While psychiatric categories have proved useful and convenient for clinicians in identifying a recognizable constellation of symptoms typical for a particular disorder for the purposes of communication and eligibility for treatment regimes, the reification of these (...) categories has without doubt had negative consequences for the patient and also for the general understanding of psychiatric disorders. We argue that a complementary, integrated framework that focuses on descriptive symptom-based classifications (drawing on phenomenological interview methods and narrative) combined with a more comprehensive conception of the human subject (found in the pattern theory of self), can not only offer a solution to some of the vexed issues of psychiatric diagnosis but also support more efficacious therapeutic interventions. (shrink)

Each year in the UK there are approximately 250,000 miscarriages, 3,000 stillbirths and 3,000 terminations following a diagnosis of fetal-abnormality. This paper draws from original empirical research into the experience of pregnancy loss and the accompanying decisionmaking processes. A key finding is that there is considerable variation across England in the range of options that are offered for disposal of pregnancy remains and the ways in which information around disposal are communicated. This analysis seeks to outline the key features (...) of what constitutes effective communication in this context, where effective communication is taken to mean that patients are provided with the key information necessary, in an appropriate manner, so that they are fully able to make a decision. A primary source of evidence includes interviews with the bereaved and pregnancy-loss support workers, in order to understand how the options available, and associated necessary procedures, are communicated. In addition, patient information leaflets are also analyzed as they offer an important tool for information delivery at a difficult and emotionally charged time. Following this, an overview is provided of the information that these leaflets should contain, along with guidance on effective presentation of this information. (shrink)

Should media communication be left to the market, or rather (partly) removed from the market? This question is discussed by reconstructing an often-found ‘standard argument’ in the literature on the subject. This standard argument states that some form of market-independent media provision is required since markets will fail to deliver a specific kind of high-quality content conducive to the democratic process. This paper argues that the standard argument is defective in several respects. By doing so, it reevaluates the way (...) we think about the contribution of the media towards democracy and the role that the market is to play in this respect. First, the paper argues that the standard argument's normative premise should not be couched in a welfarist theory but in terms of the capabilities that the media should strive to realise. Second, it sets the normative expectations of the media's contribution towards the public sphere and democracy at too high a level. Third, the standard argument's diagnosis of the market's failure incorrectly assumes that the market can never generate the demand for high-quality content. An alternative, more circumscribed claim about the market's failure is presented, resting on two more contingent types of demand failure. (shrink)

More than 6% of babies are born with a structural or functional defect, and many of these need special care and treatment to survive and thrive. Such defects can be inherited, arise through exposure to altered conditions or compounds in the womb, or result from a combination of genetic and environmental factors. Since the 1940s, animal experiments and epidemiological studies have identified many environmental factors that can cause particular birth defects. More recently, advances in genomics have allowed a simple genetic (...) diagnosis in ∼ 30% of birth defects. However, the cause of the remainder is a mystery. I believe that a key limiter to successful identification of new environmental factors is that clinicians, epidemiologists and developmental biologists all approach the topic from different angles. I propose that better communication between such experts will further increase our understanding of the environmental causes of birth defects, and potentially reduce their global burden. (shrink)

Congenitally infertile woman such as those with Turner syndrome or Mayer Rokitansky-Kuster-Hauser syndrome have available the technologies of oocyte harvestation, cryropreservation, in-vitro fertilization, and gestational surrogacy in order to have genetically related offspring. Since congenital infertility results in a variety of experiences that impacts on nearly every aspect of a person’s life, in the future it is possible that these women might desire a congenitally infertile child through the use of preimplantation genetic diagnosis so as to share this common (...) bond. While infertility results in a relatively normal quality of life, it is morally wrong to necessitate the future use of infertility services with its variable success rate on a child. Also, whereas the woman has fundamental reproductive autonomy, she lacks the substantive autonomy regarding the specific characteristics of her child. Finally, the infertile community does exhibit a strong presence, but it lacks characteristics that define it as a culture. (shrink)

The dilemma of whether and how to disclose a diagnosis of cancer or of any other terminal illness continues to be a subject of worldwide interest. We present the case of a 62-year-old Japanese woman afflicted with advanced gall bladder cancer who had previously expressed a preference not to be told a diagnosis of cancer. The treating physician revealed the diagnosis to the family first, and then told the patient: "You don't have any cancer yet, but if (...) we don't treat you, it will progress to a cancer". In our analysis, we examine the role of family consent, communication patterns (including ambiguous disclosure), and advance directives for cancer disclosure in Japan. Finally, we explore the implications for Edmund Pellegrino's proposal of "something close to autonomy" as a universal good. (shrink)

In this essay, I recount and examine my response to a genetic diagnosis of my disabled daughter. My daughter was forty‐nine before the diagnosis came. All her disabilities were traceable to a de novo single gene variant on the PURA gene that was discovered only in 2014. I speak of the jolt and the recalibration that this discovery engendered, concluding that, while it seemed that everything had changed, nothing had changed. But my family did discover a community in (...) which Sesha joins other PURA‐perfect sons and daughters and where we as a family acquire a “horizontal identity” marked by a genetic variant. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from (...) an acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

Communication problems are often the first noticeable symptom of developmental abnormalities. About 15% of children at the age of 2 years demonstrate a lower level of speech expression than their peers. Speech development disorders may constitute either symptoms of global developmental delay or only isolated difficulties. One of the main challenges for professionals dealing with early development support is recognizing whether a child whose linguistic competence differs significantly from that of their peers suffers from a specific language impairment, or (...) whether they belong to the group of ‘late bloomers’ who at some point, without the intervention of a specialist, will achieve an appropriate level of communication skills. Although a differential diagnosis can be extremely difficult, the analysis of the literature leads to the conclusion that there are some markers that can aid a specialist in establishing an accurate diagnosis. (shrink)

The mortality rate of patients affected with oral squamous cell carcinoma has been stable in recent decades due to several factors, especially diagnostic delay, which is often associated with a late stage diagnosis and poor prognosis. The aims of this paper were to: analyze diagnostic delay in OSCC and to discuss the various psychological factors of patients with OSCC, with particular attention to the patient’s fear of receiving news regarding their health; and the professional dynamics related to the decision-making (...) processes in cases of suspected OSCC. A preliminary review of literature focusing on OSCC diagnostic delay was performed. Seven articles were included with the diagnostic delay ranging from 45 days to approximately 6 months. Patients’ fears and, to a lesser degree, the concerns of dentists, were found to be still poorly investigated. On the basis of the authors’ professional experience, the development of oral lesions of unknown origin may generate different behaviors in the decision-making processes by patients and clinicians, and fear may play a key role in the distinct steps of this process. It is crucial to increase awareness and inform patients about the onset of OSCC, and contemporaneously encourage experimental studies on patients’ fear and professional behaviors with respect to communication regarding OSCC. (shrink)

OBJECTIVES: To study some ethical problems created by accession of a previously nomadic and traditional society to modern invasive medicine, by assessment of physicians' attitudes towards sharing information and decision-making with patients in the setting of a serious illness. DESIGN: Self-completion questionnaire administered in 1993. SETTING: Riyadh, Jeddah, and Buraidah, three of the largest cities in Saudi Arabia. SURVEY SAMPLE: Senior and junior physicians from departments of internal medicine and critical care in six hospitals in the above cities. RESULTS: A (...) total of 249 physicians participated in the study. Less than half indicated they provided information on diagnosis and prognosis of serious illnesses all the time. Physicians who were more senior and those who spoke Arabic fared better than other groups. The majority preferred to discuss information with close relatives rather than patients, even when the patients were mentally competent. Most of the physicians felt patients had the right to refuse a specific treatment modality, and 68% denied patients the right to demand such a treatment if considered futile. Further analysis showed that physicians' attitudes varied along a spectrum from passive to paternalistic with the largest group in a balanced position. CONCLUSIONS: In traditional societies where physicians are regarded as figures of authority and family ties are important, there is a considerable shift of access to information and decision-making from patients to their physicians and relatives in a manner that threatens patients' autonomy. Ethical principles, wider availability of invasive medical technology and a rise in public awareness dictate an attitude change. (shrink)

Epistemologists typically assume that the acquisition of knowledge from testimony is not threatened at the stage at which audiences interpret what proposition a speaker has asserted. Attention is instead typically paid to the epistemic status of a belief formed on the basis of testimony that it is assumed has the same content as the speaker’s assertion. Andrew Peet has pioneered an account of how linguistic context sensitivity can threaten the assumption. His account locates the threat in contexts in which an (...) audience’s evidence under-determines which proposition a speaker is asserting. I argue that Peet’s epistemic uncertainty account of the threat is mistaken and I propose an alternative. The alternative locates the threat in contexts that provide factors that give audiences a mistaken psychological certainty or confidence that a speaker has asserted a proposition she has not. (shrink)

In psychiatry's transformation from an asylum-based to a community-oriented profession, false positive diagnoses became a major challenge to the validity of the diagnostic system. The shift to descriptive, symptom-based operationalized diagnostic criteria of DSM-III further exacerbated this difficulty because of the contextually based nature of the distinction between normal distress and mental disorder. Through selected examples, the degree of success with which DSM-III and DSM-IV have attended to the challenge of avoiding false positive diagnoses is examined. Conceptual analysis of selected (...) criteria sets, with a focus on counterexamples to the claim that DSM criteria imply disorder, is performed. Psychiatry has so far failed to systematically confront the problem of false positives. Flaws in criteria, which can be recognized even by lay people, remain unaddressed, despite the fact that the issue is purely conceptual and is not sensitive to any new research information. (shrink)

David Kaplan's semantic theory for indexicals yields a distinct logic for indexical languages that generates contingent a priori truths. These special truths of the logic of indexicals include examples like "I am here now", an utterance of which expresses a contingent state of affairs and yet which, according to Kaplan, cannot fail to be true when it is uttered. This claim is threatened by the problem of displaced communications: answerphone messages, for example, seem to facilitate true instances of the negation (...) of this supposed logical truth as they allow the agent of the message to no longer be at the location of the message when it is encountered by an audience. Many such displaced communications can be identified in everyday natural language uses of indexicals. Recent discussion has suggested that Kaplan's error is to be overly restrictive in the possible contexts of utterance his semantic theory recognizes, as he fails to acknowledge the possibility of utterances that occur at a context distinct from that in which they are constructed. I reject this diagnosis and defend Kaplan's semantic theory. Displaced communications, I argue, are best understood as resulting from a pragmatically introduced metalinguistic context-shifting operation and hence do not demand revision of Kaplan's semantic theory. I provide an analysis of the pragmatic process underlying this operation and make the case for its merits over those of rival accounts of displaced communications. (shrink)

Objective:Prior research examining sexual and intimacy concerns among metastatic breast cancer patients and their intimate partners is limited. In this qualitative study, we explored MBC patients’ and partners’ experiences of sexual and intimacy-related changes and concerns, coping efforts, and information needs and intervention preferences, with a focus on identifying how the context of MBC shapes these experiences.Methods:We conducted 3 focus groups with partnered patients with MBC [N = 12; M age = 50.2; 92% White; 8% Black] and 6 interviews with (...) intimate partners [M age = 47.3; 83% White; 17% Black]. Participants were recruited through the Fox Chase Cancer Center Tumor Registry and the Cancer Support Community. Qualitative data were analyzed using the Framework Method and Dedoose software.Results:Qualitative analyses revealed several key themes reflecting ways in which MBC shapes experiences of sex/intimacy: the heavy disease/treatment burden leads to significant, long-term sexual concerns and consequent heightened emotional distress for both patients and partners ; viewing the relationship as having “an expiration date” influences patients’ and partners’ concerns related to sex/intimacy and complicates coping efforts; and information needs extend beyond managing sexual side effects to include emotional aspects of intimacy and the added strain of the life-limiting nature of the disease on the relationship. The heightened severity of sexual concerns faced by patients with MBC, compounded by the terminal nature of the disease, may place patients and partners at risk for significant adverse emotional and interpersonal consequences.Conclusion:Findings suggest unique ways in which sex and intimate relationships change after a diagnosis of metastatic breast cancer from both patients’ and partners’ perspectives. Consideration of the substantial physical and emotional burden of MBC and the broader context of the relationship and intimacy overall is important when developing a sexuality-focused intervention in this population. Addressing sexual concerns is a critical part of cancer care with important implications for patients’ health and quality of life. (shrink)

Objectives: To evaluate relatives’ attitudes towards informing patients with Alzheimer’s disease about their diagnosis.Setting: A university hospital in Italy.Methods: The closest relatives of each of 71 subjects diagnosed for the first time as having AD were interviewed, using a semistructured questionnaire. Spontaneous requests by relatives not to communicate issues concerning the diagnosis were also recorded.Results: Forty three relatives spontaneously requested that patients not be fully informed. After being interviewed, nobody thought that the patient should be given all the (...) information. Justifications were related to the fear of the onset or worsening of depressive symptoms in the patient.Conclusions: In Italy relatives’ opposition to informing AD patients appears to be common. Knowledge of the relatives’ attitudes may be useful for clinicians but disclosure of diagnosis should be based on the clinical evaluation of the patient and on a prudent evaluation of the relationship between the patient and her/his relative caregiver. (shrink)

The recommended treatment for dual diagnosis - the co-occurrence of substance use and another mental disorder - requires seamless integration of the involved disciplines and services. However, no integrative framework exists for communicating about dual diagnosis cases across disciplinary or sectoral boundaries. We examine if Enactive Psychiatry may bridge this theoretical gap. We evaluate the enactive approach through a two-step pragmatic lens: Firstly, by taking a historical perspective to describe more accurately how the theoretical gap within the field (...) of dual diagnosis initially developed. Secondly, by applying the Enactive Psychiatry approach to data from a longitudinal study on the trajectory of cannabis use in psychosis disorders. By applying the theory rather than simply presenting it, we position ourselves better to evaluate whether it may assist the purpose of achieving a more expedient pragmatic “grip” on the field of dual diagnosis. In our discussion, we suggest that this may very well be the case. Finally, we consider the enactive approach as one of a small handful of new theories of mental disorders that draw on systems thinking and ecological psychology, and discuss whether they have the potential for a wider progressive problemshift within psychiatry. The case in favor of such potential, we argue, is less strong unless the role of complexity, similar to that seen within the dual diagnosis field, may be demonstrated for other fields of clinical practice. (shrink)

Refusal of organ donation is common, and becoming more frequent. In Australia refusal by families occurred in 56% of cases in 1995 in New South Wales, and had risen to 82% in 1999, becoming the most important determinant of the country's very low organ donation rate .Leading causes of refusal, identified in many studies, include the lack of understanding by families of brain death and its implications, and subsequent reluctance to relegate the body to purely instrumental status. It is an (...) interesting paradox that surveys of the public continue to show considerable support for organ donation programmes—in theory we will, in practice we won't .In this paper we propose that the Australian community may, for good reason, distrust the concept of and criteria for “whole brain death”, and the equation of this new concept with death of the human being. We suggest that irreversible loss of circulation should be reinstated as the major defining characteristic of death, but that brain-dead, heart-beating entities remain suitable organ donors despite being alive by this criterion. This presents a major challenge to the “dead donor rule”, and would require review of current transplantation legislation. Brain dead entities are suitable donors because of irreversible loss of personhood, accurately and robustly defined by the current brain stem criteria."Even the dead are not terminally ill any more.". (shrink)

The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet‐based computer‐mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika‐related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and (...) July 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika‐associated microcephaly; (b) experiencing feelings and expectations of the ‘imperfect’ child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers’ lack of clarity to guide the family members. The ‘unknown’ factor of ZIKA was an additional stressful factor in the experience of the families. (shrink)

For most of us, learning to communicate is as effortless as breathing, and like air, communication skills are elemental; integral to our human existence in this world. Our communicative competencies might be seen as a bridge, facilitating our relationship with the world we are immersed in. But what happens when a child has difficulty learning to communicate effectively? What happens when their most basic messages of hunger or thirst fail to be understood or they are unable to jointly share (...) in everyday experiences of curiosity, joy, frustration, or anger? In these situations, it is the role of the Speech-Language Pathologist (SLP) to span the distance between a child and their family, a child and the world, building a route for life experiences and understandings to cross over. An SLP often begins with assessment and after a brief interaction, an SLP may come to a ‘naming’ such as delay or disorder. While the caring professional may intend this naming to be helpful in better understanding a child or facilitating access to valuable support, this naming may also place an immeasurable weight upon the child and their family. The act of naming is therefore an ethical concern. Through observation and interviews, this paper presentation explores SLP’s experiences of coming to a diagnosis through the human lens of phenomenological inquiry. It seeks to enhance thoughtful and conscientious practice by considering the ‘ethical experience of caring responsibility’ as applied to SLP (van Manen, 2016). (shrink)

BackgroundCognitive frailty includes reversible and potentially reversible subtypes; the former is known as concurrent physical frailty and pre-mild cognitive impairment subjective cognitive decline, whereas the latter is known as concurrent PF and MCI. The diagnoses of pre-MCI SCD and MCI are based on clinical criteria and various subjective cognitive decline questionnaires. Heterogeneous assessment of cognitive impairment results in significant variability of CI, CF, and their subtype prevalence in various population-based studies.ObjectiveThis study aimed to compare the classification differences in CI and (...) CF subtypes from PF and normal cognition by applying clinical and objective cognitive criteria. Clinical criteria comprised Fried PF and clinical MCI criteria combined with the SCD questionnaire, whereas objective criteria comprised Fried PF and objective cognitive criteria based on the norm-adjusted six neuropsychological test scores.MethodsOf the 335 volunteers in this study, 191 were diagnosed with CI based on clinical cognitive diagnosis criteria, and 144 were identified as robust normal based on objective cognitive assessment from the community-dwelling older adult cohort. Individuals with clinical CI, including 94 with MCI and 97 with pre-MCI SCD, were reclassified into different z-score-derived MCI, pre-MCI SCD, and normal subgroups based on objective cognitive criteria. The classification diagnostic accuracy of normal cognition, PF, pre-MCI, MCI, CF, and CF subtypes based on clinical and objective criteria was compared before and after adjusting for age, sex, and education level.ResultsThe reclassification of objective assessments indicated better performance than that of clinical assessments in terms of discerning CI severity among different subgroups before adjusting for demographic factors. After covariate adjustment, clinical assessments significantly improved the ability to cognitively discriminate normal individuals from those with pre-MCI SCD and MCI but not the z-score-derived pre-MCI SCD and MCI groups from the robust normal group. Furthermore, the adjustment did not improve the ability to discriminate among individuals with reversible CF from those with potentially reversible CF and pre-MCI only SCD from MCI only SCD.ConclusionsObjective criteria showed better performance than clinical criteria in the diagnosis of individuals with CI or CF subtypes. Rapid clinical cognitive screening in combination with normative z-scores criteria is cost effective and sustainable in clinical practice. (shrink)

La investigación se desarrolla en la circunscripción número 66 del Consejo Popular Puerto Príncipe en el período 2008-2014, tiene como objetivo proponer acciones para la educación ambiental en la Circunscripción para la transformación de una cultura ambiental comunitaria. Se tuvo en cuenta las principales necesidades ambientales de sus moradores, lo que se constató a través del diagnóstico realizado previamente mediante la aplicación de un sistema de métodos y técnicas. A research was carried out with the objective of proposing actions for (...) the transformation of a community environmental culture at Circumscription 66 of Puerto Príncipe Popular Council during 2008-2014. The main environmental needs of residents were taken into account, which were verified by means of a previously performed diagnosis through the application of a system of methods and techniques. (shrink)

La disfasia es un término que conceptualiza una entidad gnoseológica relacionada con la organización del lenguaje en su evolución. Es un trastorno grave y de prolongada duración que afecta a niños desde el inicio del desarrollo del lenguaje, se extiende a toda la infancia y la adolescencia y puede dejar secuelas en el estado adulto. En esta revisión bibliográfica se propone un acercamiento a la comprensión de sus dimensiones, concepto, síntomas y pautas para el diagnóstico e intervención desde el enfoque (...) de la Comunicación. Dysphasia is a term that conceptualizes a gnoseologic entity related to the organization of language in its evolution. It is a severe and prolonged duration disorder that affects children since the beginning of the language development and extends to all children and adolescents; it can also leave consequences in the adult stage. This review proposes an approach to the understanding of its dimensions, concept, symptoms and guidelines for the diagnosis and involvement from a communication perspective. (shrink)

While online medical consultations have become increasingly popular, not least in times when epidemics make access to medical facilities difficult, research exploring the interactive value of OMC is still in its infancy. This study examines patients’ disalignment with speculative diagnosis and its management by doctors in OMC interactions, which to my best knowledge are not examined. From a discourse analytic perspective, this study adopts Du Bois’s notion of stance-taking to approach text-based interactions collected from a widely used OMC website (...) in China. This study finds that patients’ disalignment is often based on hard evidence, which is different from the major findings of previous studies. When addressing such disalignment, doctors adopt varied discursive strategies, which are hardly mentioned in prior studies, in particular, strategies that address the affective aspect of patients’ disalignment. This study thus provides a different perspective on disalignment and its management in the clinical context. (shrink)

Ontologies, as the term is used in informatics, are structured vocabularies comprised of human- and computer-interpretable terms and relations that represent entities and relationships. Within informatics fields, ontologies play an important role in knowledge and data standardization, representation, integra- tion, sharing and analysis. They have also become a foundation of artificial intelligence (AI) research. In what follows, we outline the Coronavirus Infectious Disease Ontology (CIDO), which covers multiple areas in the domain of coronavirus diseases, including etiology, transmission, epidemiology, pathogenesis, (...) class='Hi'>diagnosis, prevention, and treatment. We emphasize CIDO development relevant to COVID-19. (shrink)

We discuss an epileptic incident in an undiagnosed 13-year old girl participating in a clinical study investigating the effects of transcranial direct current stimulation in healthy children and adolescents. This incident poses important research ethics questions with regard to study design, especially pertaining to screening and gaining informed consent. Potential benefits and problems of the incident also need to be considered. The ethical analysis of the case presented in this paper has been informed by an in-depth interview conducted after the (...) incident with the child and the accompanying parent. We discuss the ethical implications of the epileptic incident, the need for improving screening procedures for studies with minors and for providing more effective communication. This case also underscores the problem of undetected teenage epilepsy in neuropsychological clinical studies and the necessity of raising more awareness of this issue. Since research in tDCS is an active and expanding field, we conclude with providing some recommendation that could ensure that future research on tDCS, or other therapies and neuro-interventions where there is a risk of triggering an epileptic seizure, take into account the specifics of teenage epilepsy and the need for more thorough provision of information during the process of gaining informed consent. (shrink)

The research literature suggests that physicians’ attitudes regarding disclosing a diagnosis of cancer have changed, from nondisclosure to full disclosure. Physicians’ attitudes towards disclosing a patient’s prognosis are likewise said to have changed, although not to the same degree.The aim of this study was to identify inherent challenges in communicating information about imminent death. It included one set of interviews with patients and another set with doctors, and subsequent discussions of ways to overcome obstacles to patients’ understanding their situation. (...) Patients were diagnosed with leukemia, myeloma, or lung cancer; the doctors were hematologists and lung oncologists. The two sets of interviews were analyzed separately using a content analysis model developed by Graneheim and Lundman. For each set of interviews, eight content areas were defined as belonging to an area of interest and scrutinized for the information they included regarding communicating prognoses to patients.The main finding was a discrepancy between patients’ desire to be fully informed regarding their prognosis and physicians’ reluctance to offer a prognosis until a patient had overt signs of approaching death. We conclude that existing guidelines for disclosure of bad news should be modified to encourage disclosure and discussion of uncertain prognostic information, unless a patient is clearly opposed to receiving such information or otherwise not a suitable partner for dialogue. (shrink)

Resumen: En este artículo se presentan diversas nociones útiles para explicar las relaciones de complementariedad y antagonismo que ocurren entre lenguas que comparten un espacio geosociocultural determinado. Dicha relación dinámica es reconocida con el nombre de interacción lingüística o interactividad lingüística. Se reflexiona acerca de los procesos dinámicos generados entre el mapuzugun y el castellano y se discuten las descripciones sociolingüísticas realizadas en torno a la lengua mapuche. Se observa que en ellas hay un énfasis en los estados de las (...) lenguas, en las relaciones asimétricas existentes y en los productos finales de esas relaciones, lo que se entiende como una visión generalizada de la situación. Ante esta generalización, se propone la revisión in situ de la interacción lingüística entre el castellano y el mapuzugun y la generación de diagnósticos territoriales que den cuenta de los procesos interactivos, dinámicos, históricos, dialécticos e identitarios, que tienen el mapuzugun y el castellano en las comunidades.: In this paper we discuss some useful concepts to explain the opposing and complementary relationship between languages that share a specific geosociocultural context. This dynamic relationship is known as linguistic and social interactions. This paper discuss the dynamic processes arising between the mapuzugun and Spanish language, and it also explores some sociolinguistic descriptions about the Mapuche language which are mostly narrow and focus on the asymmetric relationship between languages and the results of these relationships. In this context we propose a new in situ revision of the linguistic interaction to generate territorial diagnostics that consider interactive processes, dynamic and historical, dialectical and identitary concerns that both Spanish and Mapuzugun have in the communities. (shrink)

BackgroundBilateral cerebral palsy is the most common type of CP in children and is often accompanied by different degrees of communication impairment. Several studies have attempted to identify children at high risk for communication impairment. However, most prediction factors are qualitative and subjective and may be influenced by rater bias. Individualized objective diagnostic and/or prediction methods are still lacking, and an effective method is urgently needed to guide clinical diagnosis and treatment. The aim of this study is (...) to develop and validate an objective, individual-based model for the prediction of communication impairment in children with BCP by the time they enter school.MethodsA multicenter prospective cohort study will be conducted in four Chinese hospitals. A total of 178 children with BCP will undergo advanced brain magnetic resonance imaging at baseline. At school entry, communication performance will be assessed by a communication function classification system. Three-quarters of children with BCP will be allocated as a training cohort, whereas the remaining children will be allocated as a test cohort. Multivariate lesion- and connectome-based approaches, which have shown good predictive ability of language performance in stroke patients, will be applied to extract features from MR images for each child with BCP. Multiple machine learning models using extracted features to predict communication impairment for each child with BCP will be constructed using data from the training cohort and externally validated using data from the test cohort. Prediction accuracy across models in the test cohort will be statistically compared.DiscussionThe findings of the study may lead to the development of several translational tools that can individually predict communication impairment in children newly diagnosed with BCP to ensure that these children receive early, targeted therapeutic intervention before they begin school.Trial registrationThe study has been registered with the Chinese Clinical Trial Registry. (shrink)

Church-ethical statements in the context of contemporary medicine often give rise to a lot of controversy and commotion. Just think of the debates about medically assisted reproduction, genetics, prenatal diagnosis, stem cell research, organ donation, palliative sedation or euthanasia. Paul Schotsmans notes that many of these statements are inspired by a well-defined ethical model, specifically the act-deontological model. He argues that a more dynamic ethical model (personalism based on Western-European value-systems) creates space for a humane integration of the new (...) medical possibilities. With this book, he seeks to indicate how Christian faith can be an inspiration for an open-minded, humane and dynamic health care. (shrink)

Background: Post-mortem needle biopsies have been used in resource-poor settings to determine cause of death and there is interest in using them in Bangladesh. However, we did not know how families and communities would perceive this procedure or how they would decide whether or not to consent to a post-mortem needle biopsy. The goal of this study was to better understand family and community concerns and decision-making about post-mortem needle biopsies in this low-income, predominantly Muslim country in order to design (...) an informed consent process. Methods: We conducted 16 group discussions with family members of persons who died during an outbreak of Nipah virus illness during 2004-2008 and 11 key informant interviews with their community and religious leaders. Qualitative researchers first described the post-mortem needle biopsy procedure and asked participants whether they would have agreed to this procedure during the outbreak. Researchers probed participants about the circumstances under which the procedure would be acceptable, if any, their concerns about the procedure, and how they would decide whether or not to consent to the procedure. Results: Overall, most participants agreed that post-mortem needle biopsies would be acceptable in some situations, particularly if they benefitted society. This procedure was deemed more acceptable than full autopsy because it would not require major delays in burial or remove organs, and did not require cutting or stitching of the body. It could be performed before the ritual bathing of the body in either the community or hospital setting. However, before consent would be granted for such a procedure, the research team must gain the trust of the family and community which could be difficult. Although consent may only be provided by the guardians of the body, decisions about consent for the procedure would involve extended family and community and religious leaders. Conclusions: The possible acceptability of this procedure during outbreaks represents an important opportunity to better characterize cause of death in Bangladesh which could lead to improved public health interventions to prevent these deaths. Obstacles for research teams will include engaging all major stakeholders in decision-making and quickly building a trusting relationship with the family and community, which will be difficult given the short window of time prior to the ritual bathing of the body. (shrink)

Speech is a primary means of human communication and one of the most basic features of human conduct. Voice is an important part of its subsystems. A speech disorder is a condition that affects the ability of a person to speak normally, which occasionally results in voice impairment with psychological and emotional consequences. Early detection of voice problems is a crucial factor. Computer-based procedures are less costly and easier to administer for such purposes than traditional methods. This study highlights (...) the following issues: recent studies, methods of voice pathology detection, machine learning and deep learning (DL) methods used in data classification, main datasets utilized, and the role of Internet of things (IoT) systems employed in voice pathology diagnosis. Moreover, this study presents different applications, open challenges, and recommendations for future directions of IoT systems and artificial intelligence (AI) approaches in the voice pathology diagnosis. Finally, this study highlights some limitations of voice pathology datasets in comparison with the role of IoT in the healthcare sector, which shows the urgent need to provide efficient approaches and easy and ideal medical diagnostic procedures and treatments of disease identification for doctors and patients. This review covered voice pathology taxonomy, detection techniques, open challenges, limitations, and recommendations for future directions to provide a clear background for doctors and patients. Standard databases, including the Massachusetts Eye and Ear Infirmary, Saarbruecken Voice Database, and the Arabic Voice Pathology Database, were used in most articles reviewed in this article. The classes, features, and main purpose for voice pathology identification are also highlighted. This study focuses on the extraction of voice pathology features, especially speech analysis, extends feature vectors comprising static and dynamic features, and converts these extended feature vectors into solid vectors before passing them to the recognizer. (shrink)

Psychiatric disorders present distinct clinical challenges which are partly attributable to their multifactorial aetiology and the absence of laboratory tests that can be used to confirm diagnosis or predict risk. Psychiatric disorders are highly heritable, but also polygenic, with genetic risk conferred by interactions between thousands of variants of small effect that can be summarized in a polygenic risk score. We discuss four areas in which the use of polygenic risk scores in psychiatric research and clinical contexts could have (...) ethical implications. First, there is concern that clinical use of polygenic risk scores may exacerbate existing health inequities. Second, research findings regarding polygenic risk could be misinterpreted in stigmatising or discriminatory ways. Third, there are concerns associated with testing minors as well as eugenics concerns elicited by prenatal polygenic risk testing. Fourth, potential challenges that could arise with the feedback and interpretation of high polygenic risk for a psychiatric disorder would require consideration. While there would be extensive overlap with the challenges of feeding back genetic findings in general, the potential clinical use of polygenic risk scoring warrants discussion in its own right, given the recency of this possibility. To this end, we discuss how lay interpretations of risk and genetic information could intersect. Consideration of these factors would be necessary for ensuring effective and constructive communication and interpretation of polygenic risk information which, in turn, could have implications for the uptake of any therapeutic recommendations. Recent advances in polygenic risk scoring have major implications for its clinical potential, however, care should be taken to ensure that communication of polygenic risk does not feed into problematic assumptions regarding mental disorders or support reductive interpretations. (shrink)

The paper focuses on the kind of expertise required by doctors in health communication and argues that such an expertise is twofold: both epistemological and communicative competences are necessary to achieve compliance with the patient. Firstly, we introduce the specific epistemic competences that deal with diagnosis and its problems. Secondly, we focus on the communicative competences and argue that an inappropriate strategy in communicating the reasons of diagnosis and therapy can make patient compliance unworkable. Finally, we focus (...) on the case of diabetes metaphor and propose the deliberate use of metaphors in health communication as an educational tool. On the one hand, metaphors might help doctors in explaining the disease in simpler terms and framing the experience of illness according to patient’s specific needs. On the other hand, metaphors might encourage a change in patient’s beliefs on their own experience of illness, and enable them to reach a shared decision making with doctors. (shrink)

The SARS-CoV-2 (COVID-19) pandemic continues to expose underlying inequities in healthcare for black, indigenous and Latinx communities in the USA. The gaps in equitable care for communities of colour transcend the diagnosis, treatment and vaccinations related to COVID-19. We are experiencing a continued gap across racial and socioeconomic lines for those who suffer prolonged effects of COVID-19, also known as ‘Long COVID-19’. What we know about the treatment for Long COVID-19 so far is that it is complex, requires a (...) multidisciplinary approach and there is still much research needed to fully understand the effects. In this paper, we discuss pragmatic considerations for including affected communities, relevant stakeholders, and leaders from communities of colour in the planning and implementation of Long COVID-19 research. (shrink)