In lieu of an abstract, here is a brief excerpt of the content:Should Clinicians’ Views of Mental Illness Influence the DSM?Elizabeth H. Flanagan (bio) and Roger K. Blashfield (bio)Keywordsclinicians, DSM, values, psychopathology, scienceThe relationship between clinicians and the DSM is complex. Clinicians are the primary intended audience of the DSM. However, as Widiger (2007) pointed out in his commentary, there is a tension associated with trying to meet the clinical goals of the DSM and also trying (...) to optimize the scientific goals of the DSM. Most commentators would agree that the recent editions of the DSM (from the DSM-III onward) have favored scientific values (e.g., Sadler 2005). Some commentators have taken sides and aligned themselves with either clinicians or with the science of classification. For instance, Garb (2005) has argued that clinicians should receive incentives to align themselves more closely with the science of the DSM. In contrast, Westen and Shedler (1999) have favored a clinician-based approach to the DSM and have argued that an ideal classification should be based on the prototypes that clinicians use to conceptualize diagnostic categories. Perhaps an extreme suggestion on how to deal with this tension between the values of clinicians and the values of scientists is to adopt the ICD-10 solution and create two versions of the next DSM. One version would be written for clinicians and another for researchers (Phillips et al. 2003).Widiger (2007) wondered whether the two of us as authors are on the fence about how the views of clinicians should affect the DSM. As clinical psychologists who are both clinicians and researchers, we understand his comment, especially in light of our attempt in our article not to overgeneralize from the time-consuming, labor-intensive, yet methodologically limited study we reported in our major paper.Nonetheless, our answer to the question asked in the title of this response, “Should clinicians’ views of mental illness influence the diagnostic manual?” is a clear and unequivocal yes. In our view, too much of the research literature stimulated by the recent DSMs has primarily used the diagnostic criteria in these DSMs to specify patient samples and then perform various experiments to study the DSM categories. We favor a different approach to research which is consistent with a comment once made by the philosopher of science, Karl Popper: “scientific theories originate from myths, and... a myth may contain important anticipations of scientific theories” (1963, 39). We believe that clinicians, with their years [End Page 285] of experience dealing with the ambiguities, the emotionality, and the chaos of psychopathology, have formed complex conceptual systems to try to understand the mysteries of abnormal behavior. We strongly support increased research attempts that will use clinicians as subjects and that will attempt to understand how clinicians use diagnostic concepts to understand patients.Although research on clinicians has not attracted a large amount of attention in the field, there is a long history of such research studies. For instance, in the 1970s, Overall used multivariate techniques to create graphical maps of how clinicians represented relationships among diagnoses (Overall et al. 1977). Widiger has used a similar strategy in some of his research (Widiger et al. 1987). In the early 1980s, a view of concept formation from cognitive psychology was used by Cantor et al. (1980) to look at psychiatric diagnoses as representing prototypes. Horowitz and colleagues extended this research. Blashfield and his colleagues had a grant to use the prototype model to study personality disorders and performed research investigating both case histories (Blashfield et al. 1985) and analyses of diagnostic criteria (Blashfield and Breen 1989; Davis, Blashfield, and McElroy 1993). Westen and colleagues have attempted to reconceptualize DSM personality disorder categories using the prototype model (Westen and Shedler 1999). Ahn and her colleagues (Ahn et al. 2006; Kim and Ahn 2002) have taken more recent applications of ideas from cognitive psychology to study how clinicians use and understand diagnostic categories. Finally, Flanagan and colleagues (Flanagan and Blashfield 2006; Flanagan, Keeley, and Blashfield, in press; Flanagan, Miller, and Davidson, submitted) have used qualitative and quantitative data analysis techniques to try to understand the diagnostic concepts held by experienced clinicians.Besides empirical studies of how clinicians use diagnostic concepts, we also support the increased interest in... (shrink)

Introduction Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia. Evidence suggests it is a safe and effective intervention for certain types of dystonia. Important questions remain unanswered about the use of DBS in children and adolescents with TR-OCD, including whether (...) mental health clinicians would refer pediatric patients for DBS, and who would be a good candidate for DBS.Objectives To explore mental health clinicians’ views on what clinical and psychosocial factors they would consider when determining which children with OCD would be good DBS candidates.Materials and Methods In depth, semi-structured interviews were conducted with n = 25 mental health clinicians who treat pediatric patients with OCD. The interviews were transcribed, coded, and analyzed using thematic content analysis. Three questions focused on key, clinical, and psychosocial factors for assessing candidacy were analyzed to explore respondent views on candidacy factors. Our analysis details nine overarching themes expressed by clinicians, namely the patient’s previous OCD treatment, OCD severity, motivation to commit to treatment, presence of comorbid conditions, family environment, education on DBS, quality of life, accessibility to treatment, and patient age and maturity.Conclusions Clinicians generally saw considering DBS treatment in youth as a last resort and only for very specific cases. DBS referral was predominantly viewed as acceptable for children with severe TR-OCD who have undertaken intensive, appropriate treatment without success, whose OCD has significantly reduced their quality of life, and who exhibit strong motivation to continue treatment given the right environment. Appropriate safeguards, eligibility criteria, and procedures should be discussed and identified before DBS for childhood TR-OCD becomes practice. (shrink)

Background There is ongoing debate regarding whether and under which circumstances secondary findings (SF) should be offered in the pediatric context. Although studies have examined patient perspectives on receiving SF, little research has been conducted examining the experiences of clinicians offering SF to parents of newborns receiving genomic sequencing for a recently diagnosed medical condition.Methods To address this, we conducted qualitative interviews exploring the views and experiences of 12 clinicians who offered SF to parents of infants who (...) had diagnostic exome sequencing (ES) to identify the cause of their hearing loss. Interviews explored clinicians’ accounts of parents’ choices and decision-making about receiving SF, their views on whether and when to offer SF, their experiences returning SF, and any ethical challenges they encountered. Interviews were audio-recorded, transcribed and analyzed using inductive content analysis.Results Clinicians reported parents who declined all SF often felt finding out about future conditions unrelated to their child’s hearing loss may be unhelpful, or even harmful, or were overwhelmed by their child’s diagnosis. Clinicians also reported that some parents chose SF because they felt obliged to, even if they did not want to receive them. They explained that while some parents experienced decision-making regarding SF as positive, for others, this process was challenging or distressing. While clinicians generally agreed SF should be offered, mainly to promote parental choice, most felt SF should be offered after disclosing diagnostic results, primarily to avoid overwhelming parents. Clinicians encountered several ethical challenges, including balancing parental autonomy with non-maleficence, wanting to report or not report certain SF, and questioning whether parents can make an autonomous choice regarding SF.Conclusions Our findings, which are novel as they relate to parents of young infants with a recent diagnosis of hearing loss, add new insights into clinicians’ and parents’ decision-making regarding SF in pediatrics. (shrink)

Surgery is an important part of health care worldwide. Without access to surgical treatments, morbidity and mortality increase. Access to surgical treatment is a significant problem in global public health because surgical services are not equally distributed in the world. There is a disproportionate scarcity of surgical access in low-income countries. There are many charitable organizations around the world that sponsor surgical missions to under served nations. One such organization is Operation Smile International, a group with which both authors have (...) volunteered. This paper will describe the purpose and processes involved in Operation Smile and identify some of the key ethical issues that arise in short term medical volunteer work highlighting the importance of sustainability. (shrink)

Addiction is increasingly described as a “chronic and relapsing brain disease”. The potential impact of the brain disease model on the treatment of addiction or addicted individuals’ treatment behaviour remains uncertain. We conducted a qualitative study to examine: (i) the extent to which leading Australian addiction neuroscientists and clinicians accept the brain disease view of addiction; and (ii) their views on the likely impacts of this view on addicted individuals’ beliefs and behaviour. Thirty-one Australian addiction neuroscientists and (...) class='Hi'>clinicians (10 females and 21 males; 16 with clinical experience and 15 with no clinical experience) took part in 1 h semi-structured interviews. Most addiction neuroscientists and clinicians did not uncritically support the use of brain disease model of addiction. Most were cautious about the potential for adverse impacts on individuals’ recovery and motivation to enter treatment. While some recognised the possibility that the brain disease model of addiction may provide a rationale for addicted persons to seek treatment and motivate behaviour change, Australian addiction neuroscientist and clinicians do not assume that messages about “diseased brains” will always lead to increased treatment-seeking and reduced drug use. Research is needed on how neuroscience research could be used in ways that optimise positive outcomes for addicted persons. (shrink)

The antiabortion movement is increasingly using ostensibly scientific measurements such as ‘fetal heartbeat’ and ‘fetal pain’ to provide ‘objective’ evidence of the moral status of fetuses. However, there is little knowledge on how clinicians conceptualise and operationalise the moral status of fetuses. We interviewed obstetrician/gynaecologists and neonatologists on this topic since their practice regularly includes clinical management of entities of the same gestational age. Contrary to our expectations, there was consensus among clinicians about conceptions of moral status regardless (...) of specialty. First, clinicians tended to take a gradualist approach to moral status during pregnancy as they developed and viewed viability, the ability to live outside of the uterus, as morally significant. Second, in contrast to ‘fetal pain’ laws and philosophical discussions about the ethical salience of sentience, the clinicians in our study did not consider the ability to feel pain as a morally relevant factor in moral status determinations. Third, during previability and perviability, clinicians viewed moral status as a personal value decision, which should be made by pregnant people and parents of neonates. (shrink)

The antiabortion movement is increasingly using ostensibly scientific measurements such as ‘fetal heartbeat’ and ‘fetal pain’ to provide ‘objective’ evidence of the moral status of fetuses. However, there is little knowledge on how clinicians conceptualise and operationalise the moral status of fetuses. We interviewed obstetrician/gynaecologists and neonatologists on this topic since their practice regularly includes clinical management of entities of the same gestational age. Contrary to our expectations, there was consensus among clinicians about conceptions of moral status regardless (...) of specialty. First, clinicians tended to take a gradualist approach to moral status during pregnancy as they developed and viewed viability, the ability to live outside of the uterus, as morally significant. Second, in contrast to ‘fetal pain’ laws and philosophical discussions about the ethical salience of sentience, the clinicians in our study did not consider the ability to feel pain as a morally relevant factor in moral status determinations. Third, during previability and perviability, clinicians viewed moral status as a personal value decision, which should be made by pregnant people and parents of neonates. (shrink)

Background: There is little research comparing clinicians’ and managers’ views on priority settings in the healthcare services. During research on two different qualitative research projects on healthcare prioritisations, we found a striking difference on how hospital executive managers and clinical healthcare professionals talked about and understood prioritisations. Aim: The purpose of this study is to explore how healthcare professionals in mental healthcare and somatic medicine prioritise their care, to compare different ways of setting priorities among managers and (...) class='Hi'>clinicians and to explore how moral dilemmas are balanced and reconciled. Research design and participants: We conducted qualitative observations, interviews and focus groups with medical doctors, nurses and other clinical members of the interdisciplinary team in both somatic medical and mental health wards in hospitals in Norway. The interviews were recorded and transcribed verbatim. Ethical considerations: Basic ethical principles for research ethics were followed. The respondents signed an informed consent for participation. They were assured anonymity and confidentiality. The studies were approved by relevant ethics committees in line with the Helsinki Convention. Findings: Our findings showed a widening gap between the views of clinicians on one hand and managers on the other. Clinicians experienced a threat to their autonomy, to their professional ideals and to their desire to perform their job in a professional way. Prioritisations were a cause of constant concern and problematic decisions. Even though several managers understood and empathised with the clinicians, the ideals of patient flow and keeping budgets balanced were perceived as more important. Discussion: We discuss our findings in light of the moral challenges of patient-centred individual healthcare versus demands of distributive justice from healthcare management. Conclusion: The clinicians’ ideals of autonomy and good medical and nursing care for the individual patients were perceived as endangered. (shrink)

Background: International developments suggest that providing clinical ethics services to help clinicians negotiate ethical issues that arise in clinical practice is beneficial and reflects best practice in promoting high ethical standards and patient-centered care. The aim of this study was to explore the needs and experiences of clinical staff members to inform the development of future clinical ethics support. Methods: Health professionals at a large regional health service completed an online survey containing questions about the frequency of ethical and (...) legal issues encountered in clinical practice, the type of situations that gave rise to the ethical and/or legal uncertainty or concern, how clinicians currently address these issues, and what support would be welcome. Results: The survey was completed by 369 staff members, including 61% with more than 10 years in the profession and 51% in nursing/midwifery. Two-thirds (66%) indicated they often considered ethical implications of their clinical decisions, and half (49%) often considered the legal implications. More than half (58%) were often/occasionally concerned about the ethically right thing to do. Patient requests for borderline treatment (47%), staff disagreements about patient care (48%), and patients declining recommended treatment (54%) were the most frequent reasons given for ethical or legal uncertainty. Sixty-nine percent of respondents indicated that the way their department addressed ethical issues could be improved and 85% agreed that there is a need for more discussion on ethical issues. The majority (82%) of respondents had encountered ethically challenging clinical situations where additional support would have helped. Common approaches to issues were discussion with colleagues/supervisor (91.1%), discussion at handover/group forums (50.8%), and consultation with guidelines/protocols (60.9%). Conclusions: A majority of clinical staff members surveyed have encountered ethically/legally challenging cases daily for which they have often sought additional advice. This study indicates that many clinical staff members would welcome some form of additional clinical ethics support including advice and education. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (‘open notes’). However, even in countries (...) that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

Clinician scientists have gained institutional support in the era of translational research, as the key solution to closing the ‘translational gap’ between biomedical research and medical practice. However, clinician scientists remain an ‘endangered species’ in search of a secure niche, while new grants and training programs attempt to counteract their measurable decline in numbers over the past decades. Our study asks how an occupational space for clinician scientists is currently situated between the politics of translation, professional dynamics, and the specialization (...) of academic disciplines. We interviewed clinician scientists, their adjacent professions—clinicians and biomedical researchers—, and contrast their views with expectations from the discourse on clinician scientists in the biomedical and policy literature. We identify professionalizable work and tasks that relate to, first, being able to speak the two languages of both clinic and research, second, translating patients’ needs and clinical experience for further research, and third, counteracting the trends towards specialization by providing an inclusive point of view. We find that clinician scientists are overburdened with fulfilling a hybrid role of simultaneously being clinicians and scientists. Based on these findings, we suggest a path for the future professional development of clinician scientists towards the role of a translator. (shrink)

Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for (...) movement disorders and/or psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

Some 30 years ago the role of the clinical ethics consultant (CEC) was formalized. At the time, the perception of the role differed between two groups serving in that capacity, clinicians and nonclinicians. Differences in their roles reflected their training and experience.These divergent views were resolved semantically by designating the role of the CEC as “ethics facilitation.” In practice the different perspectives have remained. However, the subsequent published literature on clinical ethics consultation has not adequately reflected the activity (...) of the clinician as a CEC.There have been recurring unanswered calls for the acquisition of empirical data on the nature of the problems that prompt ethics consultation requests and the functions required to address them. The authors introduce a template that provides a means to acquire such data for clinician ethicists. A similar instrument could be constructed to reflect the role of the nonclinician ethicist serving in that capacity. (shrink)

Background Artificial intelligence-driven Clinical Decision Support Systems (AI-CDSS) are being increasingly introduced into various domains of health care for diagnostic, prognostic, therapeutic and other purposes. A significant part of the discourse on ethically appropriate conditions relate to the levels of understanding and explicability needed for ensuring responsible clinical decision-making when using AI-CDSS. Empirical evidence on stakeholders’ viewpoints on these issues is scarce so far. The present study complements the empirical-ethical body of research by, on the one hand, investigating the requirements (...) for understanding and explicability in depth with regard to the rationale behind them. On the other hand, it surveys medical students at the end of their studies as stakeholders, of whom little data is available so far, but for whom AI-CDSS will be an important part of their medical practice. Methods Fifteen semi-structured qualitative interviews (each lasting an average of 56 min) were conducted with German medical students to investigate their perspectives and attitudes on the use of AI-CDSS. The problem-centred interviews draw on two hypothetical case vignettes of AI-CDSS employed in nephrology and surgery. Interviewees’ perceptions and convictions of their own clinical role and responsibilities in dealing with AI-CDSS were elicited as well as viewpoints on explicability as well as the necessary level of understanding and competencies needed on the clinicians’ side. The qualitative data were analysed according to key principles of qualitative content analysis (Kuckartz). Results In response to the central question about the necessary understanding of AI-CDSS tools and the emergence of their outputs as well as the reasons for the requirements placed on them, two types of argumentation could be differentiated inductively from the interviewees’ statements: the first type, the clinician as a systemic trustee (or “the one relying”), highlights that there needs to be empirical evidence and adequate approval processes that guarantee minimised harm and a clinical benefit from the employment of an AI-CDSS. Based on proof of these requirements, the use of an AI-CDSS would be appropriate, as according to “the one relying”, clinicians should choose those measures that statistically cause the least harm. The second type, the clinician as an individual expert (or “the one controlling”), sets higher prerequisites that go beyond ensuring empirical evidence and adequate approval processes. These higher prerequisites relate to the clinician’s necessary level of competence and understanding of how a specific AI-CDSS works and how to use it properly in order to evaluate its outputs and to mitigate potential risks for the individual patient. Both types are unified in their high esteem of evidence-based clinical practice and the need to communicate with the patient on the use of medical AI. However, the interviewees’ different conceptions of the clinician’s role and responsibilities cause them to have different requirements regarding the clinician’s understanding and explicability of an AI-CDSS beyond the proof of benefit. Conclusions The study results highlight two different types among (future) clinicians regarding their view of the necessary levels of understanding and competence. These findings should inform the debate on appropriate training programmes and professional standards (e.g. clinical practice guidelines) that enable the safe and effective clinical employment of AI-CDSS in various clinical fields. While current approaches search for appropriate minimum requirements of the necessary understanding and competence, the differences between (future) clinicians in terms of their information and understanding needs described here can lead to more differentiated approaches to solutions. (shrink)

Requiring family authorization for apnea testing subtracts health professionals control over death determination, a procedure that has traditionally been considered a matter of clinical expertise alone. In this commentary, we first provide evidence showing that health professionals’ (HPs) disposition to act on death determination without family’s prior consent could be much lower than that referred to by Berkowitz and Garrett (2020). We hypothesize that HPs may have reservations about their own expertise as regards death, and may thus hesitate to impose (...) their views on patients’ families. We then address the theoretical question of clinical expertise in death determination by distinguishing judgments about facts (e.g., the presence or absence of spontaneous breathing) from interpretations given of these facts (i.e., their meaning for the vital status of an individual). We argue that, while clinicians may claim some expert authority on the former, they hold no particular authority on the latter. (shrink)

Although long touted as an ethical and legal requirement, some clinicians still seem to offer less than fully adequate informed consent processes; similarly the counseling of patients and families, particularly about post-intervention scenarios, is often perfunctory at best. Keyed to a narrative of a patient's experience with surgery for a deviated septum, this article reflects on why such less than adequate clinician behaviors tend to occur and what might be done about them. Certain legal misconceptions about informed consent are (...) highlighted in this reflection, as well as why certain clinicians seem to take such a narrow view of their responsibilities to patients. Further reference in this regard is also made to a recently constructed module on informed consent for medical residents. In it, though legal requirements for informed consent are reviewed, the basic perspective taken regards informed consent as a clinical intervention that pursues certain basic goods and values, only one of which lies in determining when legal closure for such processes has occurred. (shrink)

BACKGROUND Patients with chronic pain face significant barriers in finding clinicians to manage long-term opioid therapy (LTOT). For patients on LTOT, it is increasingly common to have them sign opioid treatment agreements (OTAs). OTAs enumerate the risks of opioids, as informed consent documents would, but also the requirements that patients must meet to receive LTOT. While there has been an ongoing scholarly discussion about the practical and ethical implications of OTA use in the abstract, little is known about how (...) clinicians use them and if OTAs themselves modify clinician prescribing practices. OBJECTIVE To determine how clinicians use OTAs and the potential impacts of OTAs on opioid prescribing. DESIGN We conducted qualitative analysis of four focus groups of clinicians from a large Midwestern academic medical center. Groups were organized according to self-identified prescribing patterns: two groups for clinicians who identified as prescribers of LTOT, and two who did not. PARTICIPANTS 17 clinicians from General Internal Medicine, Family Medicine, and Palliative Care were recruited using purposive, convenience sampling. APPROACH Discussions were recorded, transcribed, and analyzed for themes using reflexive thematic analysis by a multidisciplinary team. KEY RESULTS Our analysis identified three main themes: (1) OTAs did not influence clinicians’ decisions whether to use LTOT generally but did shape clinical decision-making for individual patients; (2) clinicians feel OTAs intensify the power they have over patients, though this was not uniformly judged as harmful; (3) there is a potential misalignment between the intended purposes of OTAs and their implementation. CONCLUSION This study reveals a complicated relationship between OTAs and access to pain management. While OTAs seem not to impact the clinicians’ decisions about whether to use LTOT generally, they do sometimes influence prescribing decisions for individual patients. Clinicians shared complex views about OTAs’ purposes, which shows the need for more clarity about how OTAs could be used to promote shared decision-making, joint accountability, informed consent, and patient education. (shrink)

A number of recent developments in our understanding of the biology of heritability question commonly held views on the immutability of genetic factors. These have numerous potential implications for improving understanding and practice in pre- and postconceptional care and for infant and child mental health, and they carry a cautionary message against overgeneralization.

Background Big data and AI applications now play a major role in many health contexts. Much research has already been conducted on ethical and social challenges associated with these technologies. Likewise, there are already some studies that investigate empirically which values and attitudes play a role in connection with their design and implementation. What is still in its infancy, however, is the comparative investigation of the perspectives of different stakeholders. Methods To explore this issue in a multi-faceted manner, we conducted (...) semi-structured interviews as well as focus group discussions with patients and clinicians. These empirical methods were used to gather interviewee’s views on the opportunities and challenges of medical AI and other data-intensive applications. Results Different clinician and patient groups are exposed to medical AI to differing degrees. Interviewees expect and demand that the purposes of data processing accord with patient preferences, and that data are put to effective use to generate social value. One central result is the shared tendency of clinicians and patients to maintain individualistic ascriptions of responsibility for clinical outcomes. Conclusions Medical AI and the proliferation of data with import for health-related inferences shape and partially reconfigure stakeholder expectations of how these technologies relate to the decision-making of human agents. Intuitions about individual responsibility for clinical outcomes could eventually be disrupted by the increasing sophistication of data-intensive and AI-driven clinical tools. Besides individual responsibility, systemic governance will be key to promote alignment with stakeholder expectations in AI-driven and data-intensive health settings. (shrink)

Defensive medicine has become pervasive. Defensive medicine is often thought of as a systems issue, the inevitable result of an adversarial malpractice environment, with consequent focus on system-responses and tort reform. But defensive medicine also has ethical and professionalism implications that should be considered beyond the need for tort reform. This article examines defensive medicine from an ethics and professionalism perspective, showing how defensive medicine is deeply problematic. First, a definition of defensive medicine is offered that describes the essence of (...) defensive practice: clinical actions with the goal of protecting the clinician against litigation or some adverse outcome. Ethical arguments against defensive medicine are considered: defensive medicine is deceptive and undermines patient autonomy; defensive medicine subjugates patient interests to physician interests and violate fiduciary obligations; defensive medicine exposes patients to harm without benefit; defensive medicine undermines trust in the profession; and defensive medicine violates obligations of justice. Possible arguments in favor of defensive medicine are considered and refuted. Defensive practice is therefore unethical and unprofessional, and should be viewed as a challenge for medical ethics and professionalism. (shrink)

Detection of Alzheimer’s disease in an early stage is receiving increasing attention for a number of reasons, such as the failure of drug trials in more advanced disease stages, the demographic evolution, the financial impact of AD, and the approval of amyloid tracers for clinical use. Five focus group interviews with stakeholders were conducted.. The verbatim transcripts were analysed via the Nvivo 11 software. Most stakeholder groups wanted to know their own amyloid PET scan result. However, differences occurred between FGs: (...) two groups wanted to know, whilst in the three other groups FG members opted not to know or were still in doubt about their decision. Stakeholders provided insight into their reasons for wanting to know their amyloid PET scan result, for not wanting to know their result, or why they were in doubt about their decision. Several advantages and disadvantages were mentioned as part of knowing their amyloid PET scan result. Certain considerations were clustered in a grey zone, in between advantage and disadvantage, such as the emotional consequences. Clinicians, researchers, and policymakers ought to be aware of the diversity of reasons for wanting to know their result and how possible benefits and risks can be viewed differently. The current findings are of importance for future early diagnosis and disclosure of results in the research setting. (shrink)

BackgroundHuman infection studies (HIS) are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries (LMICs) where HIS are new and ethical challenges may be heightened. Consultation with stakeholders is needed to support contextually appropriate and acceptable study design. We examined stakeholder perceptions about the acceptability and ethics of HIS in Malawi, to inform decisions about planned pneumococcal challenge research and wider understanding of HIS ethics in LMICs.MethodsWe conducted 6 deliberative focus groups and 15 (...) follow-up interviews with research staff, medical students, and community representatives from rural and urban Blantyre. We also conducted 5 key informant interviews with clinicians, ethics committee members, and district health government officials.ResultsStakeholders perceived HIS research to have potential population health benefits, but they also had concerns, particularly related to the safety of volunteers and negative community reactions. Acceptability depended on a range of conditions related to procedures for voluntary and informed consent, inclusion criteria, medical care or support, compensation, regulation, and robust community engagement. These conditions largely mirror those in existing guidelines for HIS and biomedical research in LMICs. Stakeholder perceptions pointed to potential tensions, for example, balancing equity, safety, and relevance in inclusion criteria.ConclusionsOur findings suggest HIS research could be acceptable in Malawi, provided certain conditions are in place. Ongoing assessment of participant experiences and stakeholder perceptions will be required to strengthen HIS research during development and roll-out. (shrink)

Many diseases and disease symptoms still lack effective treatment. At the same time, certain controversial Schedule I drugs, such as heroin and cannabis, have been reputed to have considerable therapeutic potential for addressing significant medical problems. Yet, there is a paucity of U.S. clinical studies on the therapeutic uses of controlled drugs. For example, people living with HIV/aids experience a variety of disease- and medication-related symptoms. Their chronic pain is intense, frequent, and difficult to treat. Nevertheless, clinical trials of compassionate (...) management for their chronic symptoms, which should be a research priority, are stymied. Stakeholders’ Views on Barriers to Research on Controlled Substances Evelyn Rhodes, Michael Andreae, Tyler Bourgiose, Debbie Indyk, Rosamond Rhodes, and Henry Sacks We employed qualitative methods to develop an understanding of the barriers to research on potential therapeutic uses of Schedule I drugs so that they might be addressed. We elicited the perspectives of key stakeholder groups that would be involved in such studies: people living with HIV/aids, clinicians, and members of institutional review boards. As we identified obstacles to research, we found that all of the stakeholder groups arrived at the same conclusion, that clinical research on the therapeutic potential of these drugs is ethically required. (shrink)

The provision of intensive care enables the lives of neonates, infants and children to be sustained or extended in circumstances previously regarded as impossible. However, as well as benefits, such care may confer burdens that resultingly frame continuation of certain interventions as futile, conferring more harm than or any, benefit. Subsequently, clinicians and families in the paediatric intensive care unit are often faced with decisions to withdraw, withhold or limit intensive care in order to act in the best interests (...) of the child. An integral consideration in respect of these decisions is that futility is a concept that has to be contextualised for all those involved. Recent high-profile legal cases highlight the professional, clinical, legal and social conflicts that can arise when parents and clinicians have different interpretations of futility. In acknowledging the complexity of these conflicts for clinicians, this paper aims to support a better understanding of futility as an integral concept in such difficult and emotive decisions within professional practice. We utilise the concept of futility to frame how these decisions to withdraw or withhold certain invasive life-prolonging interventions are ethically and legally justifiable, even when they disagree or conflict with parental views. To support clinicians in understanding these decisions, we in part use the familiar bioethical framework of Principlism developed by Beauchamp and Childress. We suggest that understanding legal and ethical analysis of futility ultimately will help clinicians in approaching and reflecting on such decision-making. (shrink)

Labiaplasty is a form of genital surgery to reduce large or protruding labia minora. Internationally, the rates of this surgery among women and girls is increasing and is viewed as a worrying trend. Currently, the main clinical strategy is to reassure adolescents that they are normal by talking about the variation of labia size and appearance and showing pictures demonstrating the wide range of normal female genital appearance. For the most part, policy documents recommend against labiaplasty in adolescents, claiming that (...) it is medically non-essential surgery. In this paper, we contrast findings from our interviews with clinicians with the existing literature and policy documents and we point out areas needing more thought. This is qualitative research using semi-structured interviews. We set out to find out on what basis clinicians decide how to treat or manage adolescent patients seeking labiaplasty. We interviewed clinicians who are likely to be approached by under-eighteens requesting labiaplasty. We use interpretive content analysis and thematic analysis to analyse the data. Our findings support the emphasis on education and reassurance as the first step for all patients, but other issues that have not figured previously in the literature that would alter clinical strategies for managing patients emerge as well. Key findings are that reassurance does not always work and that the distinction between functional and appearance concerns is not a solid foundation in itself for deciding whether surgery is ethically appropriate. We conclude that the distinction between functional and appearance concerns is not ethically relevant. It is open to different interpretations and is not regarded by all clinicians as the definitive factor in relation to surgery. The focus of clinicians should be on relieving distress whatever the cause. Appearance reasons may sometimes justify surgery but, also, functional reasons may sometimes not be sufficient justification for surgery. (shrink)

Nourishing the Inner Life of Clinicians and Humanitarians: The Ethical Turn in Psychoanalysis, demonstrates the demanding, clinical and humanitarian work that psychotherapists often undertake with fragile and devastated people, those degraded by violence and discrimination. In spite of this, Donna M. Orange argues that there is more to human nature than a relentlessly negative view. Drawing on psychoanalytic and philosophical resources, as well as stories from history and literature, she explores ethical narratives that ground hope in human goodness and (...) shows how these voices, personal to each analyst, can become sources of courage, warning and support, of prophetic challenge and humility which can inform and guide their work. Over the course of a lifetime, the sources change, with new ones emerging into importance, others receding into the background. Donna Orange uses examples from ancient Rome, from twentieth century Europe, from South Africa, and from nineteenth century Russia. She shows how not only can their words and examples, like those of our personal mentors, inspire and warn us; but they also show us the daily discipline of spiritual self-care, although these examples rely heavily on the discipline of spiritual reading, other practitioners will find inspiration in music, visual arts, or elsewhere and replenish the resources regularly. Nourishing the Inner Life of Clinicians and Humanitarians will help psychoanalysts to develop a language with which to converse about ethics and the responsibility of the therapist/analyst. This is an exceptional contribution highly suitable for practitioners and students of psychoanalysis and psychotherapy. Donna M. Orange teaches, consults, and offers study groups for psychoanalysts and gestalt therapists. She seeks to integrate contemporary psychoanalysis with radically relational ethics. Recent books are _Thinking for Clinicians: Philosophical Resources for Contemporary Psychoanalysis and the Humanistic Psychotherapies _, and _The Suffering Stranger: Hermeneutics for Everyday Clinical Practice_, both from Routledge. (shrink)

Despite recent increasing support for the brain disease model of alcohol and drug addiction, the extent to which the model may clinically impact addiction treatment and client behaviour remains unclear. This qualitative study explored the views of community-based clinicians in Australia and examined: whether Australian community-based clinicians support the BDM of addiction; their attitudes on the impact the model may have on clinical treatment; and their views on how framing addiction as a brain disease may impact (...) addicted clients’ behaviour. Six Australian community-based clinicians participated in semi-structured in-depth interviews that were analysed using thematic analysis. Whilst the BDM was not fully supported by this purposive sample of Australian community-based clinicians, there was acceptance that addiction neuroscience formed a key part of a wider addiction framework. Participants believed the BDM ignored key social, psychological and environmental factors important for successful treatment. The BDM was seen as potentially irrelevant for certain client types, however the model was believed to integrate with particular therapies. Participants believed that for clients viewing their addiction in terms of a brain disease, there were potential positive and negative impacts on client behaviour. Implications for addiction treatment practice and public health policy are discussed. (shrink)

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify (...) key questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a “think list” of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 17-21 [Access article in PDF] Self-Injury:Symbolic Sacrifice/Self-Assertion Renders Clinicians Helpless Christa Krüger Keywords feminism, iconic communication, moral conflict, oppression, psychiatrist/psychologist roles, societal norms. POTTER'S PAPER CONSIDERS self-injury in women diagnosed with borderline person ality disorder (BPD) to be a form of body modification where the body is used to communicate meaning. She touches on symbolism as a possible explanatory theory for this (...) sort of self-injury. She also refers to the culture of body commodification as underlying self-injury. She then argues that clinicians have a duty to give uptake to the patient's own interpretations about the meaning of the self-injury. Giving uptake is a virtuous approach for ethical interactions with people diagnosed with BPD who self-injure, and it aims to preserve the communicator's integrity, along with other benefits. Potter offers five maxims for giving uptake properly. However, I shall argue that giving uptake can be very difficult for clinicians, and that an appreciation of this difficulty depends on an expansion and linkage of some of the theories that she touched on. Self-injury is revisited experimentally as a double-edged sword of symbolic sacrifice and iconic-symbolic self-assertion. This revisiting aims to illustrate how clinicians might be caught in a double bind, where giving uptake properly might be very difficult if not more or less doomed to fail.Potter's paper starts by situating self-injury in a broader discourse of body modifications. In this discourse the body is being used as a text, a tool to communicate meaning. The meaning that is communicated might be difficult or impossible to articulate otherwise (by using words, for example). The meaning of the communication is embedded in a context of social, cultural, religious, political, and other norms. Potter explores possible interpretations of the meaning of self-injury in women with BPD, including an interpretation of self-injury as symbolic sacrifice. She suggests that a cultural understanding/nonunderstanding of the meaning of a particular instance of self-injury is an important determinant of whether such self-injury is considered pathological/nonpathological. She then shifts the focus to the present-day culture in which women's bodies are commodified and objectified, and where women become alienated from their bodies. Self-injury might then be interpreted as an attempt to re-own one's body as a part of oneself. This re-owning is a socially transgressive act that violates repressive norms for the bodies of women. [End Page 17]Notwithstanding these possible significations of self-injury, Potter then argues that clinicians have a duty to give uptake to the patient's own interpretations, instead of jumping to conclusions (my oversimplification) about the meaning of the self-injury. Giving uptake, then, constitutes a framework for ethical interactions with people diagnosed with BPD who self-injure, and it aims to preserve the communicator's integrity. Potter offers five maxims for giving uptake properly.At the risk of losing their essence, I translate the five maxims for practicing psychiatrists as involving the following: critical self-reflection about one's own conceptual framework and cultural context; being receptive to the patient's conceptual framework and cultural context; giving the patient the benefit of the doubt; being open to the emergence of new meanings of self-injury; and keeping a range of possible interpretative options open, rather than insisting on having the final word. We should try to understand what the world looks like from the patient's position. All of this requires some moral effort.Potter describes a number of benefits that result from giving uptake. Giving uptake is a crucial corrective to the human tendencies of becoming overly committed to prevailing societal norms and conceptual schemes (stuck in our ways), of imposing our views on others, and of silencing or distorting the communications of our patients. Giving uptake allows clinicians to be dialogically responsive and to treat patients with respect and dignity. Giving uptake fosters trust in a therapeutic relationship where clinicians do not exploit their patients' vulnerabilities. Giving... (shrink)

One strategy for defenders of gene patenting is to adopt a constructivist interpretation of genetic testing to avoid the I argue that accepting this view (which seems to be the approach of the U.S. Office of Patents and Trademarks) results in an intolerable dilemma for physicians. They must either infringe patents or fail to act on all the medically relevant information they possess (malpractice).

The question of what works in psychotherapy has been a subject of debate in the recent years, occupying both clinicians and researchers. In this study, we aimed to assess the current perspectives held by clinicians regarding the processes which produce changes in psychotherapy, as well as the predictors of specific views. Licensed therapists, consisting mainly of psychodynamically and integratively oriented psychologists, were asked to write in their own words what they think works in psychotherapy. Thematic analysis was (...) employed to assess the main mechanisms of change as perceived by the therapists. Differences in the prevalence of specific themes were assessed using Friedman and Wilcoxon signed-rank tests. Univariate logistic regressions were employed to assess the factors that predict the probability of reporting a specific mechanism of change. The results indicated that the therapeutic bond was the most highly reported mechanism of change, followed by theory-driven mechanisms of change, therapist characteristics, therapist professionalism, and client motivation. Male therapists were more likely to indicate the professionalism as a mechanism of change compared to female therapists. Higher education was associated with lower reports of therapists’ characteristics as the mechanisms of change. These results suggest that therapists acknowledge the importance of the working alliance, and that the perception of the mechanism of change is associated with various factors which comprise therapist orientation. Limitations and directions for future research are discussed. (shrink)

Background Implementation science presents ethical issues not well addressed by traditional research ethics frameworks. There is little empirical work examining how clinicians whose work is affected by implementation studies view these issues. Accordingly, we interviewed clinicians working at sites participating in an implementation study seeking to improve patient handoffs to the intensive care unit (ICU).Methods We performed semi-structured interviews with 32 clinicians working at sites participating in an implementation study aiming to improve patient handoffs from the operating (...) room to the ICU. We analyzed the interviews using an iterative coding process following a conventional content analysis approach.Results Clinicians’ greatest concern about involvement was possible damage to interpersonal relations with more senior clinicians. They were divided about whether informed consent from clinicians was necessary but were satisfied with the study’s approach of sending out mass communications about the study. They did not think opting out of the implementation portion of the study was feasible but saw this inability to opt out as unproblematic because they equated the study with routine quality improvement. Those clinicians who helped launch the study at their sites recounted several different ways of doing so beyond simply facilitating access.Conclusions The risks that clinicians identified stemmed more from their general status as employees than their specific work as clinicians. Implementation researchers should be attuned to the ethical ramifications of involving employees of varying ranks. Implementation researchers using hybrid designs should also be sensitive to the possibility that practitioners affected by a study will equate it with quality improvement and overlook its research component. Finally, the interactions that go into facilitating an implementation study are more various than the “gatekeeping” typically discussed by research ethicists. More research is needed on the ethics of the myriad interactions that are involved in making implementation studies happen. (shrink)

Background In August 2017, Chile lifted its complete ban on abortion by permitting abortion in three limited circumstances: 1) to save a woman’s life, 2) lethal fetal anomaly, and 3) rape. The new law allows regulated use of conscientious objection in abortion care, including allowing institutions to register as objectors. This study assesses medical and midwifery students’ support for CO, following legal reform. Methods From October 2017 to May 2018, we surveyed medical and midwifery students from seven universities located in (...) Santiago, Chile. Universities included 4 secular and 3 private religiously-affiliated universities; all offering medical degrees with a specialization in obstetrics and gynecology and five offering midwifery degrees. We used generalized estimating equations to identify characteristics associated with student support for CO, intentions to use CO to refuse to care for someone seeking abortion, and support for CO at the institutional level. Results 333 of the 413 eligible students who opened the survey, completed the questions on conscientious objection; 26% were seeking medical degrees with an ob-gyn specialty, 25% were seeking midwifery degrees, and 49% were seeking medical degrees and had not yet decided their specialty. While nearly all endorse requirements for conscientious objecting clinicians to inform and refer abortion-seeking patients, a minority would personally use conscientious objection to avoid caring for a patient seeking abortion. About half of religious-university students and one-fifth of secular-university students support objections at the institutional level. Conclusions Most students support the regulated use of CO which preserves patients’ access to abortion care. Religious-university student views on the use of conscientious objection in abortion care are discordant with those of their institutions which currently support institutional-level objections. (shrink)

This paper is an exploration of the state of ‘clinical unease’ experienced by clinicians in contexts where professional judgement—grounded in clinical knowledge, critical reflection and a sound grasp of the law—indicates that there is more than one ethically defensible way to proceed. The question posed is whether the courts can be viewed as an appropriate vehicle to settle clinical unease by providing a ruling that clarifies the legal and ethical issues arising in the case, even in situations where there (...) is no dispute between the patient (or her proxies) and the healthcare team. The concept of ‘clinical unease’ is framed with reference to the broader experience of clinical decision-making, and distinguished from other widely discussed phenomena in the healthcare literature like moral distress and conscientious objection. A number of reported cases are briefly examined where the courts were invited to rule in circumstances of apparent ‘unease’. The respective responsibilities of clinicians and courts are discussed: in particular, their capability and readiness to respond to matters of ethical concern. Four imagined clinical scenarios are outlined where a clinical team might welcome a court adjudication, under current rules. Consideration is given to the likelihood of such cases being heard, and to whether there may be better remedies than the courts. There are final reflections on what clinicians may actually wish for in seeking court involvement, and on whether a willingness to engage with the experience of clinical unease may lead to greater sensitivity towards the value perspectives of others. (shrink)

The passage from a posture of clinician to that of clinician–bioethicist poses significant challenges for health professionals, most notably with regards to theoretical or epistemological views of complex ethical impasses encountered in clinical settings. Apprehending these situations from the only clinical perspective of the nurse or the doctor, for example, can be very unproductive to help solve this kind of situation and certainly poses great limits to the role of the clinician–bioethicist. Drawing on my own experience as a former (...) nurse who, following graduate studies in bioethics has begun providing ethics consultation services, I argue that clinicians must undergo an epistemological transformation in order to become clinician–bioethicists. A source of inspiration or framework for would-be clinician–bioethicists is, I suggest, the Petite éthique developed by the contemporary French philosopher Paul Ricoeur. Specifically, clinician–bioethicists should develop specific core ethical competencies (in line with the conclusions of the American Society for Bioethics and Humanities (Core competencies for health care ethics consultation, 1998); namely: savoir or knowing, savoir faire or knowing how to do, and savoir être or knowing how to be. (shrink)

This compact and innovative book tackles one of the central issues in drug policy: the lack of a coherent conceptual structure for thinking about drugs. Drugs generally fall into one of seven categories: prescription, over the counter, alternative medicine, common-use drugs like alcohol, tobacco and caffeine; religious-use, sports enhancement; and of course illegal street drugs like cocaine and marijuana. Our thinking and policies varies wildly from one to the other, with inconsistencies that derive more from cultural and social values than (...) from medical or scientific facts. Penalties exist for steroid use, while herbal remedies or cold medication are legal. Native Americans may legally use peyote, but others may not. Penalties may vary for using different forms of the same drug, such as crack vs. powder cocaine. Herbal remedies are unregulated by the FDA; but medical marijuana is illegal in most states. Battin and her contributors lay a foundation for a wiser drug policy by promoting consistency and coherency in the discussion of drug issues and by encouraging a unique dialogue across disciplines. The contributors are an interdisciplinary group of scholars mostly based at the University of Utah, and include a pharmacologist, a psychiatrist, a toxicologist, a trial court judge, a law professor, an attorney, a diatary specialist, a physician, a health expert on substance abuse, and Battin herself who is a philosopher. They consider questions like the historical development of current policy and the rationales for it; scientific views on how drugs actually cause harm; how to define the key notions of harm and addiction; and ways in which drug policy can be made more consistent. They conclude with an examination of the implications of a consistent policy for various disciplines and society generally. The book is written accessibly with little need for expert knowledge, and will appeal to a diverse audience of philosophers, bioethicists, clinicians, policy makers, law enforcement, legal scholars and practitioners, social workers, and general readers, as well as to students in areas like pharmacy, medicine, law, nursing, sociology, social work, psychology, and bioethics. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Parenting Adults with ASD: Lessons for Researchers and CliniciansCassandra R. Newsom, Amy S. Weitlauf, Cora M. Taylor, and Zachary E. WarrenRecent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services in the United States (...) for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insufficient transition planning for high school students, and generally insufficient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specific intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a).For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our field has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specific intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuro-plasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfilling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, financial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes.Grief and Joy: Opposite Sides of the Same Parenting CoinThe idea of grieving a diagnosis is controversial. Many of the writers seemed to feel conflicted about their grief responses and the validity of their feelings. Research shows that many families view the diagnostic process as extremely stressful (Siklos & [End Page 199] Kerns, 2005; Heiman, 2002). Feelings of sadness, anxiety, and depression are common at the point of diagnosis and may reemerge as milestones pass unmet. Families must modify the futures they imagined for their children and begin to envision new goals and dreams. Anonymous Three described this process when she wrote:Most children grow up, go to school, get jobs, move out of their parents’ home, etc. My husband and I have had to seriously consider how much of these are even possible for a young man with autism, even one who has a good number of functional life skills.Tasks of adolescence and adulthood such as starting high school, driving a car, and moving out of the house may be delayed and hard won if met. Raising a child with ASD appears to have particular challenges. Throughout this process, families begin to redefine what “success” means. Rather than ascribing to societal standards, they find joy in personal milestones. McDonald described the triumph of teaching his nephew to shake women’s hands instead of touching their hair, an important safety goal that took three months to accomplish. Each family thereby creates its own path.People outside of the family often do not understand the complicated interplay of love and obligation as well as the frustration and fulfillment that families experience. Just like any family, the parents of children with ASD describe many joys in addition to their struggles. They see their children’s strengths in a world that too often focuses on their weaknesses. Gifted with the everyday experience of their child’s development, they see past the necessity of a... (shrink)

Objectives: To assess the knowledge and behaviour of researchers regarding criteria for authorship, and the practices of ghost and gift authorship. Design: Semidirective interviews of senior clinical researchers. Setting: University hospital. Participants: Thirty-nine main investigators of clinical research programmes. Main measurements: Awareness and use of International Committee of Medical Journal Editors (ICMJE) criteria for authorship, and perceptions about ghost and gift authorship. Results: A total of 48 protocols submitted by 42 principal investigators between 1994 and 1996 were identified. Thirty-nine investigators (...) were contacted; 37 (one of whom delegated a co-author) were interviewed between May 2002 and March 2003. Two co-authors of two principal investigators were also interviewed. In all, 42 studies were represented. The interviews lasted for 40–90 minutes and were conducted with openness and respect for confidentiality. The choice of names of co-authors did not follow the ICMJE recommendations. Half of the respondents stated they were aware of criteria for authorship and knew of ICMJE, but most of them did not cite any of the ICMJE criteria among those they applied in deciding authorship. Most of them disagreed with the obligation to meet the three criteria justifying co-authorship because they found these too rigid and inapplicable. Gift authorship was a common practice; 59% of the respondents had been a recipient of gift authorship. Twenty-five (64%) were aware of ghost authorship and the majority considered it questionable and blameworthy. Conclusions: The ICMJE criteria were ignored by clinicians at a university hospital. Ghost and gift authorship were frequent among them. There is a need for French guidelines for authorship to be prepared and implemented. (shrink)

In their analysis of the eligibility criteria for assisted dying in Canada, Downie and Schuklenk put forward a strong argument for the ethical defensibility of including mental illnesses and disabilities as underlying conditions driving a person’s request for assisted dying.1 In this commentary, we add a view on these debates from our home state of Victoria, Australia, where voluntary assisted dying has been legal since June 2019. We highlight the more conservative approach to eligibility in our setting compared with Canada, (...) and argue for debates about eligibility criteria to be conceptualised as part of a broader discussion about access to assisted dying that includes clinicians’ roles and perspectives. In our view, clinicians’ perspectives may have a significant impact on individuals’ ability to access assisted dying, regardless of legislative or other changes made to any system. ‘Voluntary assisted dying’ is the terminology used in our context, rather than Medical Assistance in Dying, so we will use that term when referring to the Victorian system. There are several key differences between the Canadian and Victorian approaches that are important in relation to the debates addressed by Downie and Schuklenk. First, the emphasis in Victoria is on patient self-administration of the VAD …. (shrink)

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform (...) is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire. The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. (shrink)

Background and Purpose The decision to perform decompressive craniectomy for patients with malignant MCA syndrome can be ethically complex. We investigated factors that clinicians consider in this decision-making process. Methods A survey including clinical vignettes and attitudes questions surrounding the use of hemicraniectomy in malignant MCA syndrome was distributed to 203 neurosurgeons, neurologists, staff and residents, and nurses and allied health members specializing in the care of neurological patients. These were practicing health care providers situated in an urban setting (...) in Canada where access to health care is covered by national policy and is a human right. Results Eighty-eight participants responded to survey. All participants unanimously supported the procedure for young and healthy patients. Advanced age, the presence of aphasia, comorbid medical conditions, and poor baseline functional status were dominant factors associated with increasing reluctance to offer surgical decompression. Patients’ previously expressed wishes were also an important consideration. Eighty-six percent of respondents agreed that withholding surgery is ethically justified if the outcome is perceived as futile. Conclusions Health care providers use similar factors to determine if aggressive management is justified given anticipated burden on patient quality of life and extended impact on society. This convergence can be harnessed beneficially for the transparent communication of medical options in the ethically complex setting of decompressive hemicraniectomy post-stroke. (shrink)

BackgroundThe aim of this survey was to determine the level of awareness and understanding of peer review and peer review models amongst junior hospital doctors and whether this influences clinical decision-making.MethodsA 30-question online anonymous survey was developed aimed at determining awareness of peer review models and the purpose of peer review, perceived trustworthiness of different peer review models and the role of peer review in clinical decision-making. It was sent to 800 trainee doctors in medical specialties on the University College (...) London Partners trainee database.ResultsThe response rate was (178/800) 22%. Most respondents were specialist registrars. Checking that research is conducted correctly (152/178, 85%) and the data interpreted correctly (148/178, 83%) were viewed as the most important purposes of peer review. Most respondents were aware of open (133/178, 75%), double-blind (125/178, 70%) and single-blind peer review (121/178, 68%). 101/178 (57%) had heard of collaborative, 87/178 (49%) of post publication and 29/178 (16%) of decoupled peer review. Of those who were aware of double-blind, single-blind open and collaborative peer review, 85 (68%), 82 (68%), 74 (56%) and 24 (24%), respectively, understood how they worked. The NEJM, Lancet and The BMJ were deemed to have most trustworthy peer review, 137/178 (77%), 129/178 (72%) and 115/178 (65%), respectively. That peer review had taken place was important for a journal content to be used for clinical decision-making 152/178 (85%), but the ability to see peer review reports was not as important 22/178 (12%). Most felt there was a need for peer review training and that this should be at the specialist registrar stage of training.ConclusionsJunior hospital doctors view peer review to be important as a means of quality control, but do not value the ability to scrutinize peer review themselves. The unquestioning acceptance of peer review as final validation in the field of medicine emphasises not only the responsibility held by medical journals to ensure peer review is done well but also the need to raise awareness amongst the medical community of the limitations of the current peer review process. (shrink)

Providers are essential to the delivery of abortion care. Yet, they often occupy an ambiguous space in political discourse around abortion. The introduction of a new abortion service in Ireland invites us to look afresh at providers. Since the Health (Regulation of Termination of Pregnancy) Act 2018 came into force, by far the most common form of abortion care has been early medical abortion (EMA). This is typically provided by General Practitioners (GPs), with approximately 10% of GPs having chosen to (...) provide EMA. This article draws on an empirical study of providers to investigate their motivations for, and experiences of, provision and their views on colleagues who have not chosen to provide. The study shows that for many providers, the choice to provide was grounded in a moral commitment to protecting women’s rights to autonomy and health and ensuring that the harms of the past were not repeated. The article argues that notwithstanding increased normalisation of EMA in Ireland, conscience still has a role to play in abortion care provision and it is important to reflect on the various aspects of this role. (shrink)

Withholding or withdrawing life-saving ventilators can become necessary when resources are insufficient. With rising cases in many countries, and likely further peaks in the coming colder seasons, ventilator triage guidance remains a central part of the COVID-19 policy response. The dominant model in ventilator triage guidelines prioritises the ethical principles of saving the most lives and saving the most life-years. We sought to ascertain to what extent this focus aligns, or conflicts, with the preferences of disadvantaged minority populations. We conducted (...) a bibliographical search of PubMed and Google Scholar and reviewed all ventilator rationing guidelines included in major recent systematic reviews, yielding 589 studies before screening. Post screening, we found six studies comprising a total of 10 591 participants, with 1247 from disadvantaged populations. Three studies reported findings stratified by race and age, two of which stratified by income. Studies included two to seven principles; all included ‘save the most lives’. Involvement of disadvantaged minority populations in eliciting preferences is very limited; few studies capture race and income. This is concerning, as despite relatively small numbers and framing effects there is an observable and plausible trend suggesting that disadvantaged groups worry that dominant principles reduce their chances of receiving a ventilator. To avoid compounding prior historical and structural disadvantage, policy makers need to engage more fully with these populations in designing and justifying ventilator rationing guidance and review their adequacy. Likewise, clinicians need to be aware that their implementation of dominant triage guidelines is viewed with higher levels of concern by minority populations. (shrink)

By definition, pain is a sensory and emotional experience that is felt in a particular part of the body. The precise relationship between somatic events at the site where pain is experienced, and central processing giving rise to the mental experience of pain remains the subject of debate, but there is little disagreement in scholarly circles that both aspects of pain are critical to its experience. Recent experimental work, however, suggests a public view that is at odds with this conceptualisation. (...) By demonstrating that the public does not necessarily endorse central tenets of the “mental” view of pain (subjectivity, privacy, and incorrigibility), experimental philosophers have argued that the public holds a more “body-centric” view than most clinicians and scholars. Such a discrepancy would have important implications for how the public interacts with pain science and clinical care. In response, we tested the hypothesis that the public is capable of a more “mind-centric” view of pain. Using a series of vignettes, we demonstrate that in situations which highlight mental aspects of pain the public can, and does, recognize pain as a mental phenomenon. We also demonstrate that the public view is subject to context effects, by showing that the public’s view is modified when situations emphasizing mental and somatic aspects of pain are presented together. (shrink)