IntroductionCerebral visual impairment is an important cause of visual impairment in western countries. Perinatal hypoxic-ischemic damage is the most frequent cause of CVI but CVI can also be the result of a genetic disorder. The majority of children with CVI have cerebral palsy and/or developmental delay. Early diagnosis is crucial; however, there is a need for consensus on evidence based diagnostic tools and referral criteria. The aim of this study is to develop guidelines for diagnosis and referral (...) in CVI according to the grade method.Patients and MethodsWe developed the guidelines according to the GRADE method 5 searches on CVI were performed in the databases Medline, Embase, and Psychinfo, each with a distinct topic.ResultsBased on evidence articles were selected on five topics: 1. Medical history and CVI-questionnaires 23. 2. Ophthalmological and orthoptic assessment 37. 3. Neuropsychological assessment 5. 4. Neuroradiological evaluation and magnetic resonance imaging 9. 5. Genetic assessment 5.ConclusionIn medical history taking, prematurity low birth weight and APGAR Scores are important. Different questionnaires are advised for children under the age of 3 years, older children and for specific risk groups. In ophthalmological examination, eye movements, specially saccades, accommodation, crowding, contrast sensitivity and visual fields should be evaluated. OCT can show objective signs of trans-synaptic degeneration and abnormalities in fixation and saccades can be measured with eye tracking. Screening of visual perceptive functioning is recommended and can be directive for further assessment. MRI findings in CVI in Cerebral Palsy can be structured in five groups: Brain maldevelopment, white and gray matter lesions, postnatal lesions and a normal MRI. In children with CVI and periventricular leukomalacia, brain lesion severity correlates with visual function impairment. A differentiation can be made between cortical and subcortical damage and related visual function impairment. Additional assessments can be necessary to complete the diagnosis of CVI and/or to reveal the etiology. (shrink)

Patient referral management is an integral part of clinical practice. However, in low-resource settings, referrals are often delayed. The World Health Organization categorizes three types of referral delays; delay in seeking care, in reaching care and in receiving care. Using two case studies of maternal referrals (from a low-resource state in India), this article shows how a culture of downstream blaming permeates referral practice in India. With no referral guidelines to follow, providers in higher-facilities evaluate (...) the clinical decision-making of their peers in lower-facilities based on patient outcome, not on objective measures. The fear of punitive action for an unfavorable maternal outcome is a larger driving factor than patient safety. The article argues for the need to formulate an ecosystem where patient responsibility is shared across the health system. In conclusion, it discusses possible solutions which can bridge communication and information gap between referring facilities. (shrink)

BackgroundGeneral practitioners often act as gatekeeper, authorizing patients’ access to hospital care. This gatekeeping role became even more important during the current COVID-19 crisis as uncertainties regarding COVID-19 made estimating the desirability of hospital referrals (for outpatient or inpatient hospitalization) complex, both for COVID and non-COVID suspected patients. This study explored Dutch general practitioners’ experiences and ethical dilemmas faced in decision making about hospital referrals in times of the COVID-19 pandemic.MethodsSemi-structured interviews with Dutch general practitioners working in the Netherlands were (...) conducted. Participants were recruited via purposive sampling. Thematic analysis was conducted using content coding.ResultsFifteen interviews were conducted, identifying four themes: one overarching regarding (1) COVID-19 uncertainties, and three themes about experienced ethical dilemmas: (2) the patients’ self-determination vs. the general practitioners’ paternalism, (3) the general practitioners’ duty of care vs. the general practitioners’ autonomy rights, (4) the general practitioners’ duty of care vs. adequate care provision.ConclusionsLack of knowledge about COVID-19, risks to infect loved ones, scarcity of hospital beds and loneliness of patients during hospital admission were central in dilemmas experienced. When developing guidelines for future crises, this should be taken into account. (shrink)

Objective To evaluate the questions asked during the informed consent process by adult and adolescent participants as well as their parents in five interventional regulatory studies conducted at our center from 2018 to 2019. Methods The study protocol was approved by Institutional Ethics Committee [EC/OA-116/2019]. Consent narratives in the source documents for the studies were evaluated. Questions asked were classified as per Indian Council of Medical Research’s guidelines. We evaluated total number of questions, nature of questions and whether there (...) was an association between education, gender, phase of trials, physician taking consent and number questions being asked. Results A total of five studies that had N = 297 consent narratives were evaluated. Narratives of n = 284 adult participants/Guardians and of n = 13 children were analysed. A total of 374 questions were asked of which children asked only 10 questions. A total of 131/284 of the participants did not ask any question. Among the participants who asked questions, the majority132/171 participants asked about risks related to investigational products followed by questions related to study procedures 83/171. Participants/guardians with higher education and those who consented for Phase III studies asked significantly more questions. Conclusion A majority of the queries were related to the risks associated with the investigational products. Educational status and the Phase of the trial were found to be significantly associated with the number of questions being asked. (shrink)

Objective To find whether Western guidelines on breaking bad news in a nonemergency department are appropriate for an emergency department of a non-Western country; according to patients’ preferences. Method We designed a 19 items questionnaire of Likert-type scale and interviewed 156 patients in the emergency department of a referral hospital in Iran. Results The patients’ preferences in 9 out of 19 statements were similar to the guidelines. “Using the maternal language” received the strongest agreement. The strongest disagreement (...) was on “encouraging the patients to talk after receiving bad news.” The summative scores of subsection indicated strong agreement for cultural issues, followed by communication skills, breaking bad news session, and privacy. Conclusion The patients’ preferences were not completely consistent with the guidelines. We could not determine if it was a situational or cultural issue. However, it is reasonable to design a new guideline for breaking bad news, considering these factors. (shrink)

Ethical guidelines are vague concerning how situations should be handled when researchers encounter participants in preexisting psychological distress. Ethical issues of beneficence, autonomy, and the nature of informed consent may arise in these situations. This study investigated the ethical practices and beliefs of 84 psychopathology researchers when confronting research participants in distress. Results indicated that psychopathology researchers in general engaged in diverse ethical practices in providing debriefing, treatment referrals, and providing for distressed participants. Characteristics of the designated studies and (...) of the researchers accounted for significant differences in ethical practices. In addition, the type of psychopathology being assessed accounted for significant differences in ethical practices and beliefs. Guidelines are offered to aid researchers who encounter participants in preexisting distress. (shrink)

BackgroundPublic health guidelines have recommended that elective medical procedures, including deep brain stimulation surgery for Parkinson’s disease, should not be scheduled during the coronavirus pandemic to prevent further virus spread and overload on health care systems. However, delaying DBS surgery for PD may not be in the best interest of individual patients and is not called for in regions where virus spread is under control and inpatient facilities are not overloaded.MethodsWe administered a newly developed phone questionnaire to 20 consecutive (...) patients with PD who received DBS surgery in Ruijin Hospital in Shanghai during the COVID-19 pandemic. The questionnaire was designed to gather the patients’ experiences and perceptions on the impact of COVID-19 on their everyday activities and access to medical care.ResultsMost of the patients felt confident about the preventive measures taken by the government and hospitals, and they have changed their daily living activities accordingly. Moreover, a large majority of patients felt confident obtaining access to regular and COVID-19-related health care services if needed. Routine clinical referral, sense of security in the hospital during the outbreak, and poor control of PD symptoms were the three main reasons given by patients for seeking DBS surgery during the COVID-19 pandemic.ConclusionThe COVID-19 pandemic has considerably impacted medical care and patients’ lives but elective procedures, such as DBS surgery for PD, do not need to be rescheduled when the health care system is not overloaded and adequate public health regulations are in place. (shrink)

The Philippine government officially responded to the Declaration of Istanbul on Organ Trafficking and the related WHO Guidelines on organ transplantation by prohibiting all transplants to foreigners using Filipino organs. However, local tourists have escaped the regulatory radar, leaving a very wide gap in efforts against human trafficking and transplant tourism. Authorities need to deal with the situation seriously, at a minimum, by issuing clear procedures for verifying declarations of kinship or emotional bonds between donors and recipients. Foreigners who (...) come to the country for transplants with same-nationality donors constitute a problem that is replicated in many transplant centers around the world. Also, emotionally related living donors continue to pose challenges for ethics committees, especially because of the realities associated with the existence of extended families. Those who find themselves facing these issues need to be armed with clear protocols for going through the process of verifying documents and individual declarations assiduously. There is also a need for international referral mechanisms at least to ensure that governments are aware when their citizens travel for transplant so they can take steps they consider suitable to address the vulnerabilities of exploited persons. (shrink)

Background The globalization of clinical research in the last two decades has led to a significant increase in the volume of clinical research in developing countries. As of 2016, Uganda was the third largest destination for clinical trials in Africa. This requires adequate capacity and systems to facilitate ethical practice. Methods This was a retrospective study involving review of laws, guidelines, policies and records from 1896 to date. Results Modern medicine evolved from 1896 and by the time of Uganda's (...) independence in 1962, a 1500 bed national referral hospital was in place and a fully‐fledged medical school was established at the Makerere University. As the practice of medicine evolved in the country, so did medical research that addressed priority health issues. The growth in modern medicine was not matched with development of research infrastructure and regulatory systems. The first documented regulation of research activities was in 1970 while the first research ethics committee established in 1986 was to facilitate review of research related to the HIV/AIDs pandemic. In 1990 an Act of Parliament was passed to facilitate development and implementation of policies, hence the development of the national guidelines in 1997, training, establishment and accreditation of research ethics committees, conferences and research site monitoring. Conclusion Over the past 120 years, the implementation and structural aspects of research ethics in Uganda have evolved through 70 years of no regulation, followed by 30 years of rudimentary regulation while the last 20 years have shown significant growth in the regulatory system associated with supportive laws, institutionalization of regulatory and training processes. (shrink)

Background The fourth section of the 1967 Abortion Act states that individuals (including health care practitioners) do not have to participate in an abortion if they have a conscientious objection. A conscientious objection is a refusal to participate in abortion on the grounds of conscience. This may be informed by religious, moral, philosophical, ethical, or personal beliefs. Currently, there is very little investigation into the impact of conscientious objection on service users in Britain. The perspectives of service users are imperative (...) in understanding the real-world consequences and potential impact of conscientious objection and should be considered when creating and reviewing policies and guidelines. This research provided a platform for women and those who can become pregnant to share their experiences and opinions at a time when these voices are largely excluded in the great tradition of Western political philosophy and law-making processes. Method Five service users were interviewed using a narrative interview approach to uncover their abortion journeys and experiences of conscientious objection. Findings The findings were presented as found poems and uncovered that doctors are not always: informing service users that they have a conscientious objection to abortion, giving service users enough information to access abortion (indirect referral), treating them non-judgmentally, and providing medically correct information. Service users did not experience burdens such as long waiting times and were still able to access legal abortion. However, service users did experience negative emotional effects, as they were often left feeling scared, angry, and hopeless when they were not referred and/or were mistreated. Conclusions Findings indicate that conscientious objection could work in practice. However, it is currently failing some individuals on an emotional level, as not all doctors are adhering to guidelines. Conscientious objection in Britain needs to be addressed, to ensure service users receive fair, impartial, non-judgmental care. (shrink)

This debate article explores how smart technologies may create a double-edged sword for patient safety and effective therapeutic relationships. Increasing utilization of health monitoring devices by patients will likely become an important aspect of self-care and preventive medicine. It may also help to enhance accurate symptom reports, diagnoses, and prompt referral to specialist care where appropriate. However, the development, marketing, and use of such technology raise significant ethical implications for therapeutic relationships and patient safety. Drawing on lessons learned from (...) other direct-to-consumer health products such as genetic testing, this article explores how smart technology can also pose regulatory challenges and encourage overutilization of healthcare services. In order for smart technology to promote safer care and effective therapeutic encounters, the technology and its utilization must be safe. This article argues for unified regulatory guidelines and better education for both healthcare providers and patients regarding the benefits and risks of these devices. (shrink)

The structure of ethics work in a hospital is complex. Professional ethics, research ethics and clinical ethics committees (CECs) are important parts of this structure, in addition to laws and national and institutional codes of ethics. In Norway all hospital trusts have a CEC, most of these discuss cases by means of a method which seeks to include relevant guidelines and laws into the discussion. In recent years many committees have received more cases which have concerned questions of principle. (...) According to Ellen Fox and co-authors the traditional CEC model suffers from a number of weaknesses. Therefore, in their organization a separate body deals with organizational matters. In this paper, we discuss what is gained and what is lost by creating two separate bodies doing ethics consultation. We do this through an analysis of detailed minutes of CEC discussions in one CEC during a 6-year period. 30 % of all referrals concerned matters of principle. Some of these discussions originated in a dilemma related to a particular patient. Most of the discussions had some consequences within the hospital organization, for clinical practice, for adjustment of guidelines, or may have influenced national policy. We conclude that a multiprofessional CEC with law and ethics competency and patient representation may be well suited also for discussion of general ethical principles. A CEC is a forum which can help bridge the gap between clinicians and management by increasing understanding for each others’ perspectives. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Conflicts—and Consensus—about Conflicts of Interest in MedicineMatthew K. Wynia and Bette–Jane Crigger*This fascinating collection of essays about individual experiences of conflict of interest leaves little doubt that physicians remain divided about the importance, impact and meaning of conflicts of interest in their work. These essays offer differing views about what conflicts of interest look and feel like “on the ground” and about whether specific conflicts of interest are bad, (...) just a fact of life, or maybe even good.Conflict, Conflict EverywhereThese essays situate conflict of interest in a variety of contexts: the treatment recommendations a physician makes for an individual patient; the relationship between teaching physician and medical student or practicing physician and health care organization; the interaction between academic researchers and industry collaborators or professional bodies and industry supporters. In this, the narratives taken together reflect the scope of concern about conflict of interest in medicine familiar in the literature. In his classic 1993 essay, Dennis Thompson noted that concerns about conflict of interest encompass issues of physician self–referral, risk sharing between physicians and health care institutions, gifts from industry, hospital purchasing practices, as well as sponsored research and research with patients (Thompson 1993). To that list have subsequently been added relationships with industry in medical education at all levels, physicians’ service as consultants to industry or members of industry speakers bureau, and development of clinical practice guidelines (Lo & Fields 2009).That almost none of these essays draw attention to some widely publicized situations of conflict of interest—for example, gifts to physicians or the provision of drug samples—should, we think, be seen more as an artifact of the authors’ varied individual experiences than as a failure by the authors to engage key concerns in the ongoing professional and public debate. It could also be that the authors, asked to submit personal stories, assumed that yet another essay about the ‘traditional’ issues in the conflicts of interest literature would be seen as redundant, routine or even boring. Or, there is the tantalizing possibility that the absence of some of the more familiar conflicts from these narratives is the early fruit of efforts to address these traditional issues through policies governing interactions between physicians and industry promulgated by academic medical centers and health systems, medical specialty societies, and industry.One significant area of concern that has emerged in recent years is conflict of interest in the development of clinical practice guidelines. E.g., Choudry et al. 2002; Sniderrman & Furberg 2009; Guyatt et al. 2010. Although none of the essays in this [End Page 101] collection address it head on, Perlmutter touches on several key issues. His depiction of how an FDA committee process limited the input he was able to provide as an expert, undermined his potential to contribute to the professional dialogue, and raised concerns about the objectivity of the drug approval process echoes concerns about objectivity, the role of expert opinion, and the presence on guideline development panels of individuals with financial interests in the recommendations to be developed that have been explored at some length in the literature, most recently by the Institute of Medicine in reports on evidentiary standards (Eden et al 2011) and principles for guideline development (Graham et al. 2011).Conflict of Interest or Dual Agency?Several essays set out physicians’ experience in navigating situations of diverging expectations. Bierut, for example, reflects on the disjunction between the goals and products of academic researchers and commercial sponsors. She saw herself advancing basic knowledge and was forced to grapple with the reality of sponsors’ goals to advance commercial ends as well. Nagldinne and Mikulec each recall struggles to reconcile their obligation to exercise professional judgment on behalf of patients with the demands of health care organizations focussed also on the bottom line. Cruz–Flores attests to the challenge of making recommendations for care when one is both a practicing clinician and a clinical investigator engaged in research that might offer benefit to a patient for whom there are limited options.Thompson defined conflicts of interest as “a set of conditions in which professional judgment concerning a primary interest (such as a patient’s welfare or the validity of... (shrink)

Stay up-to-date on the ethical and legal issues that affect your clinical and professional decisions! Ethical and Legal Issues for Mental Health Professionals: A Comprehensive Handbook of Principles and Standards details the ethical and legal issues that involve mental health professionals. Respected authorities with diverse backgrounds, expertise, and professional experience discuss contemporary theories emphasizing professional ethics, the ramifications of professional actions and decisions, and ethical standards on teaching, training, research, and publication. This informative handbook provides invaluable up-to-date information and (...) class='Hi'>guidelines vital for every mental health professional. This book is a thorough examination of ethical behavior which can be used as a reference source for the professional or a textbook for graduate students. The handbook itself is divided into five sections. The first section is a detailed introduction of ethics, law, and licensing. The second section presents general ethical principles like competence, integrity, and respect for individual rights and dignity. The third section examines confidentiality, privilege, consent, and protection. The fourth section focuses on general ethical standards in practice, including sexual contact, multiple relationships, and bartering. The fifth section presents the ethical principles and standards in teaching, training, and research. Appendices include the Ethical Principles of Psychologists and Code of Conduct (American Psychological Association, 2002) and the Code of Ethics of the National Association of Social Workers (National Association of Social Workers, 1999). Ethical and Legal Issues for Mental Health Professionals: A Comprehensive Handbook of Principles and Standards discusses: the history of basic approaches and issues in ethical philosophy five fundamental areas in the process of developing competence the necessary ingredients for the mental health professional's practice of integrity aspirational versus enforceable standards of ethics concern for the welfare of others as a core ethical principle the notion of social responsibility in the ethics codes of psychologists and social workers ethical principles, statutes, and case law protecting privacy and confidentiality issues involving the therapist-patient privilege the "duty to protect" doctrine and relevant legal issues the dynamics of multiple relationships and boundary violations sexualized dual relationships between psychologists and patients possible conflict of interest in bartering for services the requirements and implementation of maintaining patient records to avoid ethical and legal problems possible ethical dilemmas involving referrals and fees much, much more This Handbook is an essential resource for all mental health professionals, including psychologists, psychiatrists, social workers, counselors, therapists, and graduate students in mental health and the related fields. Ethical and Legal Issues for Mental Health Professionals: A Comprehensive Handbook of Principles and Standards is the first of three volumes under this title. The following volumes will focus on forensic settings and special populations/special treatment modalities. (shrink)

IntroductionThe National Institute for Health and Care Excellence guidelines acknowledge the importance of the parent–infant relationship for child development but highlight the need for further research to establish reliable tools for assessment, particularly for parents of children under 1 year. This study explores the acceptability and psychometric properties of a co-developed tool, ‘Me and My Baby’.Study designA cross-sectional design was applied. The MaMB was administered universally with mothers during routine 6–8-week Health Visitor contacts. The sample comprised 467 mothers. Dimensionality (...) of instrument responses were evaluated via exploratory and confirmatory ordinal factor analyses. Item response modeling was conducted via a Rasch calibration to evaluate how the tool conformed to principles of ‘fundamental measurement’. Tool acceptability was evaluated via completion rates and comparing ‘completers’ and ‘non-completers’ demographic differences on age, parity, ethnicity, and English as an additional language. Free-text comments were summarized. Data sharing agreements and data management were compliant with the General Data Protection Regulation, and University of York data management policies.ResultsHigh completion rates suggested the MaMB was acceptable. Psychometric analyses showed the response data to be an excellent fit to a unidimensional confirmatory factor analytic model. All items loaded statistically significantly and substantially on a single underlying factor. The item response modeling showed that most MaMB items fitted the Rasch model. item reliability was high yet the test yielded little information on each respondent, as highlighted by the relatively low ‘person separation index’ of 0.1.Conclusion and next stepsMaMB reliably measures a single construct, likely to be infant bonding. However, further validation work is needed, preferably with ‘enriched population samples’ to include higher-need/risk families. The MaMB tool may benefit from reduced response categories and some modest item wording amendments. Following further validation and reliability appraisal the MaMB may ultimately be used with fathers/other primary caregivers and be potentially useful in research, universal health settings as part of a referral pathway, and clinical practice, to identify dyads in need of additional support/interventions. (shrink)

Oocyte donation raises conflicts of interest and commitment for physicians but little attention has been paid to how to reduce these conflicts in practice. Yet the growing popularity of assisted reproduction has increased the stakes of maintaining an adequate oocyte supply and minimizing conflicts. A growing body of professional guidelines, legal challenges to professional self-regulation, and empirical research on the practice of oocyte donation all call for renewed attention to the issue. As empirical findings better inform existing conflicts and (...) their potential harms, we can better attempt to reduce these conflicts. To that end, the article first describes the nature of conflicts in oocyte donation and relevant regulations and professional guidelines. We then describe studies on conflicts at four phases of oocyte donation: recruitment, screening, stimulation, and post-stimulation monitoring. Next we consider three models for conflict reduction in medicine generally: improved professional self-regulation, outright restriction like Stark anti-referral laws, or the use of conflict mediators, like in living organ donation. We ultimately conclude that improved professional self-regulation is a reasonable starting place for oocyte donation. (shrink)

IntroductionMaking appropriate plans for the provision of hospice care is considered a perceived need in the Iranian health system. The current study aimed to develop a model for establishing hospice care delivery system for the adult patients with cancer.Materials and MethodsThis study is part of a larger study that has been done in four phases. This Health System Policy Research utilized a mixed qualitative-quantitative approach. At the first phase, a qualitative study was conducted which explained the care needs and the (...) requirements for establishing this system from the stakeholders’ perspective. The second phase aimed to examine the current situation of hospice care delivery in Iran and identify and determine the similarities and differences among them in the selected countries. At the third phase, the main areas of the model and the related indicators were extracted and prioritized by consulting with experts. Then the model was formulated. At the fourth phase, the proposed model was validated and finalized in terms of importance, scientific acceptability, and feasibility.ResultsBased on the developed model the first and the most important step in establishing the hospice care delivery system is laying the groundwork in the health system which requires focusing on policymaking. It is necessary to establish hospice centers and implement public awareness raising programs, train, and supply expert manpower, strengthen family physician and referral process, formulate clinical guidelines, encourage the private sector and NGOs.) to invest, develop end-of-life and hospice care service packages, and create quality care indicators. The proposed model had moderate feasibility.ConclusionThis model was developed based on the current Iranian healthcare structure and the needs of terminally ill cancer patients. It can be used as a model tailored to the current state of the health system and community in Iran. It is suggested to use this model as a pilot at the regional level. (shrink)

IntroductionDeep brain stimulation has become a standard treatment option for select patients with Parkinson’s disease. The selection process and surgical procedures employed have, to date, not been standardized.MethodsA comprehensive 58-question web-based survey was developed with a focus on DBS referral practices and peri-operative management. The survey was distributed to the Parkinson’s Foundation Centers of Excellence, members of the International Parkinson’s Disease and Movement Disorders Society, and the Parkinson Study Group between December 2015 and May 2016.ResultsThere were 207 individual respondents (...) drawn from 59 countries and 6 continents, of whom 64% received formal training in DBS. Thirteen percent of centers reported that DBS could proceed despite a confidence level of < 50% for PD diagnosis. A case-based approach to DBS candidacy was applied in 51.3% of centers without a cut-off for levodopa-responsiveness. Surprisingly, 33% of centers regularly used imaging for diagnostic confirmation of idiopathic PD. Thirty-one percent of centers reported that neuropsychological evaluation did not affect DBS target selection. Approximately half of the respondents reported determination of DBS candidacy based on a multidisciplinary committee evaluation and 1/3rd reported that a committee was used for target selection. Eight percent of respondents felt that psychosocial factors should not impact DBS candidacy nor site selection. Involvement of allied health professionals in the preoperative process was sparse. There was high variability in preoperative education about DBS outcome expectations. Approximately half of the respondents did not utilize a “default brain target,” though STN was used more commonly than GPi. Specific DBS procedure techniques applied, as well as follow-up timelines, were highly variable.ConclusionResults revealed high variability on the best approaches for DBS candidate selection, brain target selection, procedure type, and postoperative practices. Cognitive and mood assessments were underutilized. There was low reliance on multidisciplinary teams or psychosocial factors to impact the decision-making process. There were small but significant differences in practice across global regions, especially regarding multidisciplinary teams. The wide variability of responses across multiple facets of DBS care highlights the need for prospective studies to inform evidence-based guidelines. (shrink)

Research on sexual violence is fraught with ethical and methodological challenges due to its sensitive nature. This paper describes the ethical and methodological challenges encountered in planning and conducting two exploratory studies on sexual violence that included in-depth interviews of eight female adolescent rape survivors in Ibadan and four married women in Lagos Nigeria who were raped, forced to perform sexual acts and sexually deprived. The first challenge encountered was an Institutional Review Board requirement to obtain parental permission from adolescents, (...) when such a requirement may place the adolescent at risk if a parent was a perpetrator of sexual violence. Using arguments emphasizing the Council for International Organization for Medical Sciences guidelines helped convince the IRB to provide a waiver of parental consent. Second, the privacy required to conduct in-depth interviews for rape survivors was difficult to achieve because five of the rape survivors were apprentices who work in public settings which are typically used to conduct business in the informal sector. To overcome this challenge, interviews were conducted in safe locations, investigator's offices and homes of survivors. The culture of silence associated with sexual violence posed a challenge because it encourages perpetration of violence with impunity causing rape survivors to suffer in silence. None of the affected adolescents had sought judicial redress for rape despite availability of stringent punishment for this behaviour. Referral information was provided on where survivors could seek care. Interviews with the women could not be recorded on audio-tapes because of concerns that their partners might identify their voices from the tapes and punish them for this. Although research on sexual violence poses ethical and methodological challenges, it is not only desirable but also feasible to conduct such research in ways that ensure safety of participants. (shrink)

BackgroundIn gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in assessing (...) GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands.MethodsIn this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents’ explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged.ResultsRespondents’ ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC’s guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI.ConclusionsThis interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise. (shrink)

Recently a prospective, observational clinical study was carried out in the department of ophthalmology, at a district general hospital. The main purpose of the study was to evaluate the medicolegal and ethical implication of consent and confidentiality in ophthalmic practice, in accordance with the guidelines provided by medical law. One hundred patients, who had been referred by optometrists to ophthalmologists, were included in the study. The general ophthalmic services (GOS) 18 form, a referral form used by optometrists for (...) referring patients to ophthalmologists, which allows optometrists to share a patient's medical information with ophthalmologists, was used as a …. (shrink)

Recently, there has been increasing interest in methodological aspects of advanced imaging, including the role of guidelines, recommendations, and experts’ consensus, the practice of self-referral, and the risk of diagnostic procedure overuse. In a recent Delphi study of the European Association for Nuclear Medicine (EANM), panelists were asked to give their opinion on 47 scientific questions about imaging in prostate cancer. Nine additional questions exploring the experts’ attitudes and opinions relating to the procedure of consensus building itself were (...) also included. The purpose was to provide insights into the mechanism of recommendation choice and consensus building as seen from the experts’ point of view. Results: Regarding the factors likely to influence the willingness to refer a patient for imaging, the most voted were incorporation into guidelines and data from scientific literature, while personal experience and personal relationship were chosen by a small minority. Regarding the recommendations more relevant to prescribe an imaging procedure, it resulted the incorporation into guidelines promoted by scientific societies (59% of votes); these guidelines also resulted the more trusted. With respect to patients’ preferences considered when prescribing an imaging procedure, the most voted was accuracy, resulted more important than easy access and time to access to the procedure. The majority of the experts expressed the opinion that there is a scarce use of imaging procedures in prostate cancer. With respect to the most relevant factor to build consensus, it resulted the transparency of the process (52% of votes), followed by multidisciplinarity of contributors. The main obstacle to incorporation of modern imaging procedures into guidelines resulted the lack of primary literature on clinical impact. Conclusions: Firstly, the panelists portray themselves as having Evidence-Based Medicine oriented and scientifically inclined attitudes and preferences. Secondly, guidelines and recommendations from scientific societies, especially clinical ones, are positively taken into account as factors influencing decisions, but panelists tend to consider their own appraisal of the scientific literature as more relevant. Thirdly, in respect of overuse, panelists do not think that advanced diagnostic procedures are overutilized in the specific case of Prostate Cancer, but rather they are underutilized. (shrink)

Currently, the preferred accommodation for conscientious objection to abortion in medicine is to allow the objector to refuse to accede to the patient’s request so long as the objector refers the patient to a physician who performs abortions. The referral part of this arrangement is controversial, however. Pro-life advocates claim that referrals make objectors complicit in the performance of acts that they, the objectors, find morally offensive. I argue that the referral requirement is justifiable, although not in the (...) way that people usually assume that it is. (shrink)

The first priority of this response is to address Libet's rebuttal of my reinterpretation of his data. Then, because many authors have commented on various aspects of the debate, the rest of the response is organized in terms of subject matter, not as replies to each individual commentator. First, I reply to an objection expressed by two separate commentators to part of my reinterpretation of those of Libet's data supposedly supporting backward referral. This leads to a brief discussion of (...) the whole concept of backward referral. The relevance of the flash-lag illusion to possible measurement errors in the Libet/Trevena and Miller paradigm is addressed next. Finally, I have a few words to say on the relationship between quantum mechanical ontology and free will. (shrink)

Background: A better understanding of the pattern of epidemic-related referrals to healthcare centers might allow the identification of vulnerabilities and the required changes that the healthcare management system should undergo. Objectives: This study aimed to investigate the COVID-19 referral pattern and the role of media and health management planning in changing the trends. Methods: Data extracted from the electronic medical database of Imam Khomeini Hospital Complex (IKHC), located in Tehran, Iran, from February 20 to June 4, 2020 were examined. (...) Individuals were divided into two groups, COVID-19 positive and negative. We used Google Trends to evaluate Google Internet search queries and also available policy documents, programs, and official news related to COVID-19 in Iran during the mentioned period. Results: In this study, 8647 individuals aged 46.05 ± 16.5 years were referred to IKHC. Approximately 57% were male, and 70% were COVID-19 positive. The most clinical symptoms were dyspnea, fever, cough, and myalgia. Chronic kidney disease (CKD) and type 2 diabetes mellitus were the most common underlying health conditions. In the first two weeks, the percentage of negative cases was higher than positive cases and then the pattern was reversed, when people searched for information about COVID-19 in media. Conclusions: Proper and timely information and education to people through the media and health management measures can be effective in reducing unnecessary visits to health centers, preventing the exhaustion of medical staff, and controlling the disease during epidemics. (shrink)

Currently, the preferred accommodation for conscientious objection to abortion in medicine is to allow the objector to refuse to accede to the patient’s request so long as the objector refers the patient to a physician who performs abortions. The referral part of this arrangement is controversial, however. Pro-life advocates claim that referrals make objectors complicit in the performance of acts that they, the objectors, find morally offensive. McLeod argues that the referral requirement is justifiable, although not in the (...) way that people usually assume. (shrink)

Practices such as physician assisted suicide, even if legal, engender a range of moral conflicts to which many are oblivious. A recent proposal for physician assisted suicide provides an example by calling upon physicians opposed to suicide to refer patients to other, more sympathetic, physicians. However, the proposal does not address the moral concerns of those physicians for whom such referral would be morally objectionable. Keywords: collaboration, euthanasia, intrinsic evil, material cooperation, projects, referral, toleration CiteULike Connotea Del.icio.us What's (...) this? (shrink)

An ethical dilemma exists regarding client referral. Standards 2.01(b) (Boundaries of Competence) and 3.01 (Unfair Discrimination) of the American Psychological Association's Ethical Principles of Psychologists Code of Conduct provide psychologists with contradictory reasons to take possibly conflicting and incompatible courses of action when considering whether to refer a client. The professional literature that has explored the benefits of referring clients when the psychologist does not believe that he or she is able to work with the client's presenting concern, however, (...) has failed to examine the times in which referring may not be appropriate and, more specifically, may be an act of discrimination. This article seeks to initiate the discussion around this issue. (shrink)

Healthcare professionals often face ethical conflicts and challenges related to decision-making that have necessitated consideration of the use of conscientious objection (CO). No current guidelines exist within Spain’s healthcare system regarding acceptable rationales for CO, the appropriate application of CO, or practical means to support healthcare professionals who wish to become conscientious objectors. As such, a procedural framework is needed that not only assures the appropriate use of CO by healthcare professionals but also demonstrates its ethical validity, legislative compliance (...) through protection of moral freedoms and patients’ rights to receive health care. Our proposal consists of prerequisites of eligibility for CO (individual reference, specific clinical context, ethical justification, assurance of non-discrimination, professional consistency, attitude of mutual respect, assurance of patient rights and safety) and a procedural process (notification and preparation, documentation and confidentiality, evaluation of prerequisites, non-abandonment, transparency, allowance for unforeseen objection, compensatory responsibilities, access to guidance and/or consultative advice, and organizational guarantee of professional substitution). We illustrate the real-world utility of the proposed framework through a case discussion in which our guidelines are applied. (shrink)

Researchers conducting large community-based studies among underserved populations may collect data on health conditions that are little-acknowledged in the local setting, and for which there are few if any services for referral of participants who need follow-up diagnosis and care. In the design and planning of studies for such settings, investigators and research ethics committees may struggle to determine what constitutes effective referral and whether it is reasonably available. We offer a guiding framework for referral planning, informed (...) by our experiences of research in the field and of service on research ethics committees, to support evaluation of local referral resources and consideration of the benefits, burdens and risks of referral in the local setting. The framework addresses both the impact of referral on the well-being of the people who would be referred and the impact that referral of study participants would have on local people outside the study. We use a sustained discussion of three field-based case examples to illustrate the ethical concerns at issue and to demonstrate the use of the referral planning framework. (shrink)

A remarkable hypothesis has recently been advanced by Libet and promoted by Eccles which claims that there is standardly a backwards referral of conscious experiences in time, and that this constitutes empirical evidence for the failure of identity of brain states and mental states. Libet's neurophysiological data are critically examined and are found insufficient to support the hypothesis. Additionally, it is argued that even if there is a temporal displacement phenomenon to be explained, a neurophysiological explanation is most likely.

In an article published recently in this journal Daniel Hill argues that it is unacceptable that British law allows doctors to refuse to terminate non-emergency pregnancies but not to refuse to refer given that many doctors who are opposed to non-emergency abortion will be opposed also to any action that aids non-emergency abortion, including the action of referral. In this reply, I argue that Hill’s argument fails to describe properly the correct function of the law, which has never been (...) about ensuring people can exercise moral consistency in their behaviours. (shrink)

The original data reported by Benjamin Libet and colleagues are reinterpreted, taking into account the facilitation which is experimentally demonstrated in the first of their series of articles. It is shown that the original data equally well or better support a quite different set of conclusions from those drawn by Libet. The new conclusions are that it takes only 80 ms for stimuli to come to consciousness and that “subjective back-referral of sensations in time” to the time of the (...) stimulus does not occur. (shrink)

Clinical guidelines are special types of plans realized by collective agents. We provide an ontological theory of such plans that is designed to support the construction of a framework in which guideline-based information systems can be employed in the management of workflow in health care organizations. The framework we propose allows us to represent in formal terms how clinical guidelines are realized through the actions of are realized through the actions of individuals organized into teams. We provide various (...) levels of implementation representing different levels of conformity on the part of health care organizations. Implementations built in conformity with our framework are marked by two dimensions of flexibility that are designed to make them more likely to be accepted by health care professionals than standard guideline-based management systems. They do justice to the fact 1) that responsibilities within a health care organization are widely shared, and 2) that health care professionals may on different occasions be non-compliant with guidelines for a variety of well justified reasons. The advantage of the framework lies in its built-in flexibility, its sensitivity to clinical context, and its ability to use inference tools based on a robust ontology. One disadvantage lies in its complicated implementation. (shrink)

Background Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. Methods Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to (...) dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12). Results After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. Conclusion Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia. (shrink)

In the context of long waiting time to access rehabilitation services, a large majority of settings use referral prioritization to help manage waiting lists. Prioritization practices vary greatly between settings and there is little consensus on how best to prioritize referrals. This paper describes the prioritization processes for physiotherapy services in Québec and its potential implications in terms of equity in access to services. This is a secondary analysis of a survey of outpatient physiotherapy departments (n=98; proportion of participation (...) was 99%) conducted in 2015 across publicly funded hospitals in Québec. In many settings, persons with acute orthopaedic conditions were prioritized while chronic conditions were given a lower priority. There were 72 different combinations of prioritization criteria used in outpatient physiotherapy departments. Variability was also observed in the type of personnel involved in the prioritization process, the number of priority levels used to rank the referrals and the source of information used to prioritize referrals. These results highlight potential issues regarding equity in access to physiotherapy services: the prioritization of persons with acute conditions to the detriment of those with chronic conditions, the lack of consensus on a fair prioritization process and the importance to adequately assess patients’ needs for treatment. Further research and interventions on prioritization criteria and processes are needed to ensure equitable access to physiotherapy services, especially in the public sector. (shrink)

In the context of long waiting time to access rehabilitation services, a large majority of settings use referral prioritization to help manage waiting lists. Prioritization practices vary greatly between settings and there is little consensus on how best to prioritize referrals. This paper describes the prioritization processes for physiotherapy services in Québec and its potential implications in terms of equity in access to services. This is a secondary analysis of a survey of outpatient physiotherapy departments conducted in 2015 across (...) publicly funded hospitals in Québec. In many settings, persons with acute orthopaedic conditions were prioritized while chronic conditions were given a lower priority. There were 72 different combinations of prioritization criteria used in outpatient physiotherapy departments. Variability was also observed in the type of personnel involved in the prioritization process, the number of priority levels used to rank the referrals and the source of information used to prioritize referrals. These results highlight potential issues regarding equity in access to physiotherapy services: the prioritization of persons with acute conditions to the detriment of those with chronic conditions, the lack of consensus on a fair prioritization process and the importance to adequately assess patients’ needs for treatment. Further research and interventions on prioritization criteria and processes are needed to ensure equitable access to physiotherapy services, especially in the public sector. (shrink)

The rubber hand illusion is one of the most commonly used paradigms to examine the sense of body ownership. Touches are synchronously applied to the real hand, hidden from view, and a false hand in an anatomically congruent position. During the illusion one may perceive that the feeling of touch arises from the false hand, and that the false hand is one's own. The relationship between referral of touch and body ownership in the illusion is unclear, and some articles (...) average responses to statements addressing these experiences, which may be inappropriate depending on the research question of interest. To address these concerns, we re-analyzed three freely available datasets to better understand the relationship between referral of touch and feeling of ownership in the RHI. We found that most participants who report a feeling of ownership also report referral of touch, and that referral of touch and ownership show a moderately strong positive relationship that was highly replicable. In addition, referral of touch tends to be reported more strongly and more frequently than the feeling of ownership over the hand. The former observations confirm that referral of touch and ownership are related experiences in the RHI. The latter, however, indicate that when pooling the statements one may obtain a higher number of illusion ‘responders’ compared to considering the ownership statements in isolation. These results have implications for the RHI as an experimental paradigm. (shrink)

The referral is the key source of information that enables radiologists and radiographers to provide quality services. However, the frequency of suboptimal referrals is widely reported. This research reviews the literature to illuminate the challenges suboptimal referrals present to the delivery of care in radiology departments. The concept of suboptimal referral includes information, that is; missing, insufficient, inconsistent, misleading, hard to interpret or wrong. The research uses the four ethical principles ofnon-maleficence, beneficence, AutonomyandJusticeas an analytic framework.Suboptimal referrals can (...) causeharmby hindering safe contrast-media administration, proper radiation protection by justification of procedures, and compassionate patient care. Suboptimal referrals also hinder promoting patientbenefitsfrom the correct choice of imaging modality and protocol, an optimal performed examination, and an accurate radiology report. Additionally, patientautonomyis compromised from the lack of information needed to facilitate benefit–risk communication. Finally, suboptimal referrals challengejusticebased on lack of reasonable patient prioritising and the unfairness caused by unnecessary examinations.These findings illuminate how suboptimal referrals can inhibit good health and well-being for patients in relation to safety, missed opportunities, patient anxiety and dissatisfaction. The ethical challenges identified calls for solutions. Referral-decision support tools and artificial intelligence may improve referral quality, when implemented. Strategies addressing efforts of radiology professionals are inevitable, including gatekeeping, shared decision-making and inter-professional communication; thereby raising awareness of the importance of good referral quality and promoting commitment to ethical professional conduct. (shrink)

Covid‐19 confronts us with tragic choices, in which every option is unacceptable. On the New York State Task Force on Life and the Law, I worked on guidelines for such situations. We did not envision the scale or character of Covid‐19. To minimize fear that the decisions made in these situations might be unfair, we all must know what guidelines or mandates inform them. Only with transparency about how decisions will be made, by whom, and according to what (...) requirements can we have confidence that fairness prevails. We now face many related questions about process, goals, leadership, and trust. For example, how might ethical guidelines evolve as scientific understanding advances? Should guidelines vary with different venues? And if, as I have argued, judgment is necessary even with the best of guidelines, how can we prepare clinicians to make good judgments? Are there implications for better training of personnel in nonemergency times for what they might face in the worst of times? (shrink)

The increase in the scope of international collaborative medical research involving human subjects is raising the problem of whether and how to maintain Western ethical standards when research is conducted in countries with very different social and ethical values. Existing international ethical guidelines for research largely reflect Western concepts of human rights, focusing on the bioethical principles of respect for persons, beneficence, and justice. However, in countries and societies where these values are understood differently or are not expressed in (...) local cultures and institutions, it may be impossible or of no practical value to insert them into the research setting.In the United States, individual informed consent is considered ethically imperative for research involving human subjects. However, this imperative may be difficult to instill in societies that define persons by their relations to others, and important decisions are commonly made by heads of households or group leaders rather than by individuals. The baseline economic and health care conditions in foreign communities may also create ethical conflicts. (shrink)

Thomas discusses the referral of acts to the ultimate end unsystematically and in diverse texts. These texts are interesting in that they raise difficult questions. For example, on Thomas’s view there can be a disparity between the moral value of the act and that of the ultimate end. But what does he mean when he claims that venial sins may be habitually referred to God as the supernatural ultimate end? Moreover, he claims both that every good is desired for (...) the sake of the ultimate end and that bad agents can perform good actions. How are these two statements compatible? These texts raise additional questions about the connection between the natural and supernatural ends. If, as Thomas states, unbelievers can perform good actions, is there a sense in which unbelievers can order their acts to God as a purely natural ultimate end? (shrink)

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