Showing papers in "Journal of Medical Ethics in 2008"
TL;DR: An alternative, contextual approach to teaching ethics, which is grounded in a pragmatic-hermeneutical and dialogical ethics is presented and an example of a moral case deliberation project in a Dutch psychiatric hospital is illustrated.
Abstract: A traditional approach to teaching medical ethics aims to provide knowledge about ethics. This is in line with an epistemological view on ethics in which moral expertise is assumed to be located in theoretical knowledge and not in the moral experience of healthcare professionals. The aim of this paper is to present an alternative, contextual approach to teaching ethics, which is grounded in a pragmatic-hermeneutical and dialogical ethics. This approach is called moral case deliberation. Within moral case deliberation, healthcare professionals bring in their actual moral questions during a structured dialogue. The ethicist facilitates the learning process by using various conversation methods in order to find answers to the case and to develop moral competencies. The case deliberations are not unique events, but are a structural part of the professional training on the work floor within healthcare institutions. This article presents the underlying theory on (teaching) ethics and illustrates this approach with an example of a moral case deliberation project in a Dutch psychiatric hospital. The project was evaluated using the method of responsive evaluation. This method provided us with rich information about the implementation process and effects the research process itself also lent support to the process of implementation.
198 citations
TL;DR: The concept of coercion is analyzed, mistaken conceptions of coercion are refuted and why the offer of payment for research participation is never coercive but in some cases may produce undue inducement is explained.
Abstract: Payment for research participation has raised ethical concerns, especially with respect to its potential for coercion. We argue that characterising payment for research participation as coercive is misguided, because offers of benefit cannot constitute coercion. In this article we analyse the concept of coercion, refute mistaken conceptions of coercion and explain why the offer of payment for research participation is never coercive but in some cases may produce undue inducement.
149 citations
TL;DR: It is concluded that whilst public policy makers in a humane society should facilitate exceptional departures from a cost effectiveness norm in clinical decisions about identified individuals, it is not so obvious that they should exempt any one group of unidentified individuals within society from the rules of opportunity cost at the expense of all others.
Abstract: In healthcare, a tension sometimes arises between the injunction to do as much good as possible with scarce resources and the injunction to rescue identifiable individuals in immediate peril, regardless of cost (the "Rule of Rescue"). This tension can generate serious ethical and political difficulties for public policy makers faced with making explicit decisions about the public funding of controversial health technologies, such as costly new cancer drugs. In this paper we explore the appropriate role of the Rule of Rescue in public resource allocation decisions by health technology funding advisory bodies such as the National Institute for Health and Clinical Excellence. We consider practical approaches to operationalising the Rule of Rescue from Australia and the UK before examining the relevance of individual moral imperatives to public policy making. We conclude that that whilst public policy makers in a humane society should facilitate exceptional departures from a cost effectiveness norm in clinical decisions about identified individuals, it is not so obvious that they should, as a matter of national public policy, exempt any one group of unidentified individuals within society from the rules of opportunity cost at the expense of all others.
130 citations
TL;DR: Potential benefits and risks of GHEs are outlined, recommendations to some of the current issues are delineated and a review of current programmes dedicated to global health education is outlined.
Abstract: Medical student and resident participation in global health experiences (GHEs) has significantly increased over the last decade. In response to growing student interest and the proven impact of such experiences on the education and career decisions of resident physicians, many medical schools have begun to establish programmes dedicated to global health education. For the innumerable benefits of GHEs, it is important to note that medical students have the potential to do more harm than good in these settings when they exceed their actual capabilities as physicians-in-training. While medical training programmes are beginning to provide students with the knowledge to put their GHEs in context, they must remember that they also bear the responsibility of training their students in a framework to approach these experiences in a principled and professional way. It is necessary that these institutions provide adequate and formalised preparation for both clinical and ethical challenges of working in resource-poor settings. This paper outlines potential benefits and risks of GHEs and delineates recommendations to some of the current issues.
126 citations
TL;DR: It is argued that in a healthcare system based on both equality of opportunity and solidarity, responsible health behaviour can be justifiably expected and the possibility of introducing personal responsibility as a fair rationing criterion is briefly sketched.
Abstract: Whether it is fair to use personal responsibility of patients for their own health as a rationing criterion in healthcare is a controversial matter. A host of difficulties are associated with the concept of personal responsibility in the field of medicine. These include, in particular, theoretical considerations of justice and such practical issues as multiple causal factors in medicine and freedom of health behaviour. In the article, personal responsibility is evaluated from the perspective of several theories of justice. It is argued that in a healthcare system based on both equality of opportunity and solidarity, responsible health behaviour can—in principle—be justifiably expected. While the practical problems associated with personal responsibility are important, they do not warrant the common knee-jerk refusal to think more deeply about responsibility for health as a means of allocating healthcare resources. In conclusion, the possibility of introducing personal responsibility as a fair rationing criterion is briefly sketched.
125 citations
TL;DR: It is argued that there is fundamental confusion about the notion of “research results,” specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity.
Abstract: Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of “research results,” specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.
121 citations
TL;DR: Lack of strategies to solve ethical dilemmas and low tolerance for conflict and critique from colleagues may obstruct important and necessary ethical dialogues and lead to suboptimal solutions of difficult ethical problems.
Abstract: Background: Medicine is full of value conflicts. Limited resources and legal regulations may place doctors in difficult ethical dilemmas and cause moral distress. Research on moral distress has so far been mainly studied in nurses. Objective: To describe whether Norwegian doctors experience stress related to ethical dilemmas and lack of resources, and to explore whether the doctors feel that they have good strategies for the resolution of ethical dilemmas. Design: Postal survey of a representative sample of 1497 Norwegian doctors in 2004, presenting statements about different ethical dilemmas, values and goals at their workplace. Results: The response rate was 67%. 57% admitted that it is difficult to criticise a colleague for professional misconduct and 51% for ethical misconduct. 51% described sometimes having to act against own conscience as distressing. 66% of the doctors experienced distress related to long waiting lists for treatment and to impaired patient care due to time constraints. 55% reported that time spent on administration and documentation is distressing. Female doctors experienced more stress that their male colleagues. 44% reported that their workplace lacked strategies for dealing with ethical dilemmas. Conclusion: Lack of resources creates moral dilemmas for physicians. Moral distress varies with specialty and gender. Lack of strategies to solve ethical dilemmas and low tolerance for conflict and critique from colleagues may obstruct important and necessary ethical dialogues and lead to suboptimal solutions of difficult ethical problems.
109 citations
TL;DR: Views towards information disclosure were midway between those of the USA and Japan, and decisions regarding life prolonging therapy and assisted suicide were not influenced to a great extent by wishes of the patient or family, but more likely by religious beliefs.
Abstract: Objectives: to assess physicians’ and patients’ views in Saudi Arabia (KSA) towards involving the patient versus the family in the process of diagnosis disclosure and decision-making, and to compare them with views from the USA and Japan. Design: A self-completion questionnaire (used previously to study these issues in Japan and the USA) was translated to Arabic and validated. Participants: Physicians (n = 321) from different specialties and ranks and patients (n = 264) in a hospital or attending outpatient clinics from 6 different regions in KSA. Results: In the case of a patient with incurable cancer, 67% of doctors and 51% of patients indicated that they would inform the patient in preference to the family of the diagnosis (p = 0.001). Assuming the family already knew, 56% of doctors and 49% of patients would tell the patient even if family objected (p NS). However, in the case of HIV infection, 59% of physicians and 81% of patients would inform the family about HIV status without the patient’s consent (p = 0.001). With regards to withholding ventilatory support, about 50% of doctors and over 60% of patients supported the use of mechanical ventilation in a patient with advanced cancer, regardless of the wishes of the patient or the family. Finally, the majority of doctors and patients (>85%) were against assisted suicide. Conclusions: Although there was more recognition for a patient’s autonomy amongst physicians, most patients preferred a family centred model of care. Views towards information disclosure were midway between those of the USA and Japan. Distinctively, however, decisions regarding life prolonging therapy and assisted suicide were not influenced to a great extent by wishes of the patient or family, but more likely by religious beliefs.
103 citations
TL;DR: This investigation investigates the impact of a proposed replacement of DNR with “allow natural death” (AND) due to increased likelihood of endorsement with the term AND and results support this proposition.
Abstract: Physician-written "do not resuscitate" DNR orders elicit negative reactions from stakeholders that may decrease appropriate end-of-life care. The semantic significance of the phrase has led to a proposed replacement of DNR with "allow natural death" (AND). Prior to this investigation, no scientific papers address the impact of such a change. Our results support this proposition due to increased likelihood of endorsement with the term AND.
97 citations
TL;DR: An analysis of the intuitions behind the enhancement-is-cheating argument shows that if sports and education are understood as “practices”, with their own internal goods and standards of excellence, some potential problems of enhancement can be articulated.
Abstract: One frequently used argument in the discussion on human enhancement is that enhancement is a form of cheating. This argument is well-known in relation to doping in sports, but recently it has also been used with regard to cognitive enhancement in the context of education and exams. This paper analyses the enhancement-is-cheating argument by comparing sports and education, and by evaluating how the argument can be interpreted in both contexts. If cheating is understood as breaking the rules in order to gain an unfair advantage over others, it can be argued that some enhancements are a form of cheating. This problem of cheating is, however, relatively easy to remedy by either changing the rules, or by instituting controls and sanctions. This does not, therefore, constitute a categorical objection to enhancement. A further analysis of the intuitions behind the enhancement-is-cheating argument, however, shows that if sports and education are understood as "practices", with their own internal goods and standards of excellence, some potential problems of enhancement can be articulated. These concern the internal goods and standards of excellence that are characteristic of specific practices. Seen from this perspective, the important question is how enhancement technologies might be embedded in specific practices--or how they might corrode them.
96 citations
TL;DR: Concerns about misplaced trust and exploitation of such trust are also relevant, and ought to be taken into account, when considering why the therapeutic misconception matters ethically.
Abstract: The therapeutic misconception has been seen as presenting an ethical problem because failure to distinguish the aims of research participation from those receiving ordinary treatment may seriously undermine the informed consent of research subjects. Hence, most theoretical and empirical work on the problems of the therapeutic misconception has been directed to evaluate whether, and to what degree, this confusion invalidates the consent of subjects. We argue here that this focus on the understanding component of informed consent, while important, might be too narrow to capture the ethical complexity of the therapeutic misconception. We show that concerns about misplaced trust and exploitation of such trust are also relevant, and ought to be taken into account, when considering why the therapeutic misconception matters ethically.
TL;DR: The following article asks whether responsibility-based reasoning should be accepted as relevant for fair and legitimate healthcare rationing and argues that while a backward-looking conception of individual responsibility should not be endorsed, a forward-looking notion of responsibility may be approved.
Abstract: Unhealthy lifestyle contributes significantly to the burden of disease. Scarce medical resources that could alternatively be spent on interventions to prevent or cure sufferings for which no one is to blame, are spent on prevention or treatment of (the risk of) disease that could be avoided through individual lifestyle changes. This may encourage policy makers and health care professionals to opt for a criterion of individual responsibility for medical suffering when setting priorities. The following article asks whether responsibility-based reasoning should be accepted as relevant for fair and legitimate healthcare rationing. The luck-egalitarian argument that inequalities in health expectancies that derive from unchosen features of people’s circumstances are unjust and should be compensated, while inequalities that reflect personal choices of lifestyle may not, is discussed. It seems that while a backward-looking interpretation of individual responsibility cannot be relevant as a criterion of priority setting, a forward-looking conception of responsibility may be approved.
Within all modern societies healthcare authorities are facing difficult priority setting problems. Various criteria for rationing medical intervention have been proposed due to scarcity of resources. Until now, individual responsibility for medical suffering has been given little attention in the public or in academic debate. This is about to change. As Alexander Cappelen and Ole Norheim have pointed out in a recent article in this journal, unhealthy lifestyle contributes increasingly to the burden of disease. A better understanding of the responsibility argument is important for the assessment of policies aimed at meeting this challenge.1 In this article the following question is addressed: should responsibility-based arguments be accepted as relevant to meeting healthcare rationing fairly and legitimately? I will argue that while a backward-looking conception of individual responsibility should not be endorsed, a forward-looking notion of responsibility may be approved.
There are both empirical and theoretical reasons for …
TL;DR: The physician’s specialty continues to have a significant impact on the frequency and timing of DNR orders, while advance directive status still has no measurable impact, and documentation of end-of-life discussions is significantly associated with varying DNR ordering rates and timing.
Abstract: Background: Since the passage of the Patient Self-Determination Act, numerous policy mandates and institutional measures have been implemented. It is unknown to what extent those measures have affected end-of-life care, particularly with regard to the do-not-resuscitate (DNR) order. Methods: Retrospective cohort study to assess associations of the frequency and timing of DNR orders with advance directive status, patient demographics, physician’s specialty and extent of documentation of discussion on end-of-life care. Results: DNR orders were more frequent for patients on a medical service than on a surgical service (77.34% vs 64.20%, p = 0.02) and were made earlier in the hospital stay for medicine than for surgical patients (adjusted mean ratio of time from DNR orders to death versus total length of stay 0.30 for internists vs 0.21 for surgeons, p = 0.04). 22.18% of all patients had some form of an advance directive in their chart, yet this variable had no impact on the frequency or timing of DNR ordering. Documentation of DNR discussion was significantly associated with the frequency of DNR orders and the time from DNR to death (2.1 days with no or minimal discussion vs 2.8 days with extensive discussion, p Conclusions: The physician’s specialty continues to have a significant impact on the frequency and timing of DNR orders, while advance directive status still has no measurable impact. Additionally, documentation of end-of-life discussions is significantly associated with varying DNR ordering rates and timing.
TL;DR: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances.
Abstract: Aim: To examine how physicians' life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. Methods: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large life-stance groups in each country. Results: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient's death (PAD), physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics (up to 15.7% in The Netherlands) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. Discussion: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations.
TL;DR: A consenting algorithm was used that met the requirements of existing case law and the exigencies of the new Mental Capacity Act and a procedure was outlined which meets the ethical and legal requirements.
Abstract: Background: Many people participating in dementia research may lack capacity to give informed consent and the relationship between cognitive function and capacity remains unclear. Recent changes in the law reinforce the need for robust and reproducible methods of assessing capacity when recruiting people for research. Aims: To identify numbers of capacitous participants in a pragmatic randomised trial of dementia treatment; to assess characteristics associated with capacity; to describe a legally acceptable consent process for research. Methods: As part of a pragmatic randomised controlled trial of Ginkgo biloba for mild-moderate dementia, we used a consenting algorithm that met the requirements of existing case law and the exigencies of the new Mental Capacity Act. We decided who had capacity to give informed consent for participation in the trial using this algorithm and sought predictors of capacity. Results: Most participants (76%) with mild-moderate dementia in this trial were unable to give informed consent according to the legal criteria. When adjusted for confounding, the Mini Mental State examination did not predict the presence of capacity. Conclusion: Cognitive testing alone is insufficient to assess the presence of capacity. Researchers and clinicians need to be aware of the challenging processes regarding capacity assessment. We outline a procedure which we believe meets the ethical and legal requirements.
TL;DR: Dealing with requests for euthanasia is very challenging for GPs, although they feel committed to alleviate a patient’s suffering and to promote a peaceful death.
Abstract: Background: Caring for terminally ill patients is a meaningful task, however the patient’s suffering can be a considerable burden and cause of frustration. Objectives: The aim of this study is to describe the experiences of general practitioners (GPs) in The Netherlands in dealing with a request for euthanasia from a terminally ill patient. Methods: The data, collected through in-depth interviews, were analysed according to the constant comparative method. Results: Having to face a request for euthanasia when attempting to relieve a patient’s suffering was described as a very demanding experience that GPs generally would like to avoid. Nearly half of the GPs (14/30) strive to avoid euthanasia or physician assisted suicide because it was against their own personal values or because it was emotional burdening to be confronted with this issue. They explained that by being directed on promoting a peaceful dying process, or the quality of end-of-life of a patient by caring and supporting the patient and the relatives it was mainly possible to shorten patient’s suffering without “intentionally hastening a patient’s death on his request”. The other GPs (16/30) explained that as sometimes the suffering of a patient could not be lessened they were open to consider a patient’s request for euthanasia or physician assisted suicide. They underlined the importance of a careful decision-making process, based on finding a balance between the necessity to shorten the patient’s suffering through euthanasia and their personal values. Conclusion: Dealing with requests for euthanasia is very challenging for GPs, although they feel committed to alleviate a patient’s suffering and to promote a peaceful death.
TL;DR: NICE, despite impressive efforts, appears to have a long way to go before meeting the conditions of accountability for reasonableness, and economic models are not made sufficiently transparent to enable public scrutiny, and decision criteria other than cost-effectiveness remain enigmatic.
Abstract: Democratic societies find it difficult to reach consensus concerning principles for healthcare distribution in the face of resource constraints. At the same time the need for legitimacy of allocation decisions has been recognised. Against this background, the National Institute for Health and Clinical Excellence (NICE) aspires to meet the principles of procedural justice, specifically the conditions of accountability for reasonableness as espoused by Daniels and Sabin, that is, publicity, relevance, revisions and appeal, and enforcement. Although NICE has adopted a highly standardised approach and continuously publishes key documents on its website, its technology appraisal programme does not fulfil the publicity condition of accountability for reasonableness. Economic models are not made sufficiently transparent to enable public scrutiny, and decision criteria other than cost-effectiveness remain enigmatic. NICE's reliance on cost-utility analysis and "plausible" cost-per-quality-adjusted life year (QALY) benchmarks further raises serious issues with regard to the relevance condition of accountability for reasonableness. This is illustrated by counterintuitive cost-per-QALY rankings that are difficult to justify using reflective equilibrium methods, and by the current debate surrounding expensive therapies for rare diseases ("orphan" treatments). In addition, an excessive focus on QALYs may stand in the way of exploiting the best available effectiveness evidence. The NICE mechanism for revision and appeals is also more restrictive than provided in accountability for reasonableness. As to the enforcement condition, no effective quality assurance processes are in place for technology assessments, and implementation of guidance remains imperfect. NICE, despite impressive efforts, appears to have a long way to go before meeting the conditions of accountability for reasonableness.
TL;DR: Current data on key questions about retraction of scientific articles suggest that editors and institutional officials are taking more responsibility for correcting the scientific record but that reasons published in the retraction notice are not always reliable.
Abstract: This study provides current data on key questions about retraction of scientific articles. Findings confirm that the rate of retractions remains low but is increasing. The most commonly cited reason for retraction was research error or inability to reproduce results; the rate from research misconduct is an underestimate, since some retractions necessitated by research misconduct were reported as being due to inability to reproduce. Retraction by parties other than authors is increasing, especially for research misconduct. Although retractions are on average occurring sooner after publication than in the past, citation analysis shows that they are not being recognised by subsequent users of the work. Findings suggest that editors and institutional officials are taking more responsibility for correcting the scientific record but that reasons published in the retraction notice are not always reliable. More aggressive means of notification to the scientific community appear to be necessary.
TL;DR: Weariness of life rather than a fatal or hopeless medical condition may be a more common reason for older members of Exit Deutsche Schweiz to commit suicide.
Abstract: Background: In Switzerland, non-medical right-to-die organisations such as Exit Deutsche Schweiz and Dignitas offer suicide assistance to members suffering from incurable diseases. Objectives: First, to determine whether differences exist between the members who received assistance in suicide from Exit Deutsche Schweiz and Dignitas. Second, to investigate whether the practices of Exit Deutsche Schweiz have changed since the 1990s. Methods: This study analysed all cases of assisted suicide facilitated by Exit Deutsche Schweiz (E) and Dignitas (D) between 2001 and 2004 and investigated by the University of Zurich’s Institute of Legal Medicine (E: n = 147; D: n = 274, total: 421). Furthermore, data from the Exit Deutsche Schweiz study which investigated all cases of assisted suicide during the period 1990–2000 (n = 149) were compared with the data of the present study. Results: More women than men were assisted in both organisations (D: 64%; E: 65%). Dignitas provided more assistance to non-residents (D: 91%; E: 3%; p = 0.000), younger persons (mean age in years (SD): D: 64.5 (14.1); E: 76.6 (13.3); p = 0.001), and people suffering from fatal diseases such as multiple sclerosis and amyotrophic lateral sclerosis (D: 79%; E: 67%; p = 0.013). Lethal medications were more often taken orally in cases assisted by Dignitas (D: 91%; E: 76%; p = 0.000). The number of women and the proportion of older people suffering from non-fatal diseases among suicides assisted by Exit Deutsche Schweiz has increased since the 1990s (women: 52% to 65%, p = 0.031; mean age in years (SD): 69.3 (17.0) to 76.9 (13.3), p = 0.000), non-fatal diseases: 22% to 34%, p = 0.026). Conclusions: Weariness of life rather than a fatal or hopeless medical condition may be a more common reason for older members of Exit Deutsche Schweiz to commit suicide. The strong over-representation of women in both Exit Deutsche Schweiz and Dignitas suicides is an important phenomenon so far largely overlooked and in need of further study.
TL;DR: A society moving towards an open approach to assisted dying should carefully identify tasks to assign exclusively to medical doctors, and distinguish those possibly better performed by other professions.
Abstract: Objectives: To analyse legislation and medical professional positions concerning the doctor’s role in assisted dying in western Europe, and to discuss their implications for doctors. Method: This paper is based on country-specific reports by experts from European countries where assisted dying is legalised (Belgium, The Netherlands), or openly practiced (Switzerland), or where it is illegal (Germany, Norway, UK). Results: Laws on assisted dying in The Netherlands and Belgium are restricted to doctors. In principle, assisted suicide (but not euthanasia) is not illegal in either Germany or Switzerland, but a doctor’s participation in Germany would violate the code of professional medical conduct and might contravene of a doctor’s legal duty to save life. The Assisted Dying for the Terminally Ill Bill proposed in the UK in 2005 focused on doctors, whereas the Proposal on Assisted Dying of the Norwegian Penal Code Commission minority in 2002 did not. Professional medical organisations in all these countries except The Netherlands maintain the position that medical assistance in dying conflicts with the basic role of doctors. However, in Belgium and Switzerland, and for a time in the UK, these organisations dropped their opposition to new legislation. Today, they regard the issue as primarily a matter for society and politics. This “neutral” stance differs from the official position of the Royal Dutch Medical Association which has played a key role in developing the Dutch practice of euthanasia as a “medical end-of-life decision” since the 1970s. Conclusion: A society moving towards an open approach to assisted dying should carefully identify tasks to assign exclusively to medical doctors, and distinguish those possibly better performed by other professions.
TL;DR: If suitably adapted to the peculiarities of the field, SRs of empirical bioethics provide transparent information for ethical reasoning and decision-making that is less biased than single studies.
Abstract: Background: Publications and discussions of survey research in empirical bioethics have steadily increased over the past two decades. However, findings often differ among studies with similar research questions. As a consequence, ethical reasoning that considers only parts of the existing literature and does not apply systematic reviews tends to be biased. To date, we lack a systematic review (SR) methodology that takes into account the specific conceptual and practical challenges of empirical bioethics. Methods: The steps of systematically reviewing empirical findings in bioethics are presented and critically discussed. In particular, (a) the limitations of traditional SR methodologies in the field of empirical bioethics are critically discussed, and (b) conceptual and practical recommendations for SRs in empirical bioethics that are (c) based on the authors’ review experiences in healthcare ethics are presented. Results: A 7-step approach for SRs of empirical bioethics is proposed: (1) careful definition of review question; (2) selection of relevant databases; (3) application of ancillary search strategies; (4) development of search algorithms; (5) relevance assessment of the retrieved references; (6) quality assessment of included studies; and (7) data analysis and presentation. Conceptual and practical challenges arise because of various peculiarities in reviewing empirical bioethics literature and can lead to biased results if they are not taken into account. Conclusions: If suitably adapted to the peculiarities of the field, SRs of empirical bioethics provide transparent information for ethical reasoning and decision-making that is less biased than single studies.
TL;DR: Elderly spousal care givers of Alzheimer patients to disclosure of dementia diagnosis and subsequent care were quite satisfied with the information given them about dementia, however, the support with regard to the follow-up care of care-giving families failed to meet their needs adequately.
Abstract: Objectives: To examine the experiences of spousal care givers of Alzheimer patients to disclosure of dementia diagnosis and subsequent care. Methods: A random sample of 1943 spousal care givers of people receiving medication for Alzheimer disease (AD) was sent a cross-sectional postal survey about their opinions on the disclosure of dementia and follow-up care. A smaller qualitative study (n = 63) included open-ended questions concerning their experiences of the same topics. Results: The response rate for the survey was 77%. Of the respondents, 1214 of 1434 acknowledged themselves as their spouse’s care giver. The mean age of the care givers was 78.2 years, and that of demented spouses, 80.5 years. Of the care givers, 63% were women. The couples had long-lasting marriages (mean 52 years). Of the care givers, 93% reported that dementia had been disclosed openly to their spouse; 97% also preferred that physicians openly inform the patients of the dementia diagnosis, although 55% of their spouses with AD had developed depressive symptoms after the disclosure. Of the care givers, 71% felt they had received sufficient information about dementia. However, only 50% estimated that their spouses’ follow-up care had been well organised. The responses in the qualitative study indicated that many care givers felt grief and anxiety. They also expressed feelings of loneliness and uncertainty about how to deal with follow-up care for dementia. Conclusions: Elderly spousal care givers were quite satisfied with the information given them about dementia. However, the support with regard to the follow-up care of care-giving families failed to meet their needs adequately.
TL;DR: This paper explored how subjects in a placebo-controlled vitamin A supplementation trial among Ghanaian women aged 15-45 years perceive the trial and whether they know that not all trial capsules are the same, and to identify factors associated with this knowledge.
Abstract: OBJECTIVES: To explore how subjects in a placebo-controlled vitamin A supplementation trial among Ghanaian women aged 15-45 years perceive the trial and whether they know that not all trial capsules are the same, and to identify factors associated with this knowledge. METHODS: 60 semistructured interviews and 12 focus groups were conducted to explore subjects' perceptions of the trial. Steps were taken to address areas of low comprehension, including retraining fieldworkers. 1971 trial subjects were randomly selected for a survey measuring their knowledge that not all trial capsules are the same. The subjects' fieldworkers were also interviewed about their characteristics and trial knowledge. Factors associated with knowledge were explored using multi-level modeling. RESULTS: Although subjects knew they were taking part in research, most thought they were receiving an active and beneficial medication. Variables associated with knowledge were education and district of residence. Radio broadcasts benefited those with some schooling. Fieldworkers' characteristics were not associated with subjects' knowledge. CONCLUSIONS: Research and debate on new or improved consent procedures are urgently required, particularly for subjects with little education.
TL;DR: It is argued that there are difficulties with the application of the four principles approach to incompetent children and the most appropriate modification of the principle for them is not clear.
Abstract: I will argue that there are difficulties with the application of the four principles approach to incompetent children. The most important principle - respect for autonomy - is not directly applicable to incompetent children and the most appropriate modification of the principle for them is not clear. The principle of beneficence - that one should act in the child's interests - is complicated by difficulties in assessing what a child's interests are and to which standard of interests those choosing for children should be held. A further problem with the four principles approach is that parental authority does not follow clearly from the four principles.
TL;DR: The findings suggest that the ethics rounds above all met the need of a forum for crossing over professional boundaries and the philosophers seemed to play an important role in structuring and stimulating reasoned arguments.
Abstract: OBJECTIVE: To evaluate one ethics rounds model by describing nurses' and doctors' experiences of the rounds.
METHODS: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialys ...
TL;DR: A significant number of generalist physicians in teaching hospitals report that they do not usually discuss their errors and some do not know colleagues who would be supportive listeners, however, more than half have tried to role-model discussions.
Abstract: Background: Discussions about medical errors facilitate professional learning for physicians and may provide emotional support after an error, but little is known about physicians’ attitudes and practices regarding error discussions with colleagues. Methods: Survey of faculty and resident physicians in generalist specialties in Midwest, Mid-Atlantic and Northeast regions of the US to investigate attitudes and practices regarding error discussions, likelihood of discussing hypothetical errors, experience role-modelling error discussions and demographic variables. Results: Responses were received from 338 participants (response rate = 74%). In all, 73% of respondents indicated they usually discuss their mistakes with colleagues, 70% believed discussing mistakes strengthens professional relationships and 89% knew at least one colleague who would be a supportive listener. Motivations for error discussions included wanting to learn whether a colleague would have made the same decision (91%), wanting colleagues to learn from the mistake (80%) and wanting to receive support (79%). Given hypothetical scenarios, most respondents indicated they would likely discuss an error resulting in no harm (77%), minor harm (87%) or major harm (94%). Fifty-seven percent of physicians had tried to serve as a role model by discussing an error and role-modelling was more likely among those who had previously observed an error discussion (OR 4.17, CI 2.34 to 7.42). Conclusions: Most generalist physicians in teaching hospitals report that they usually discuss their errors with colleagues, and more than half have tried to role-model discussions. However, a significant number of these physicians report that they do not usually discuss their errors and some do not know colleagues who would be supportive listeners.
TL;DR: It is concluded that physicians’ confidence regarding DNR discussions is low compared with their confidence regarding other medical discussions and that confidence varies by sex and perceived difficulty of the task.
Abstract: Purpose: Physicians are often reluctant to discuss “Do Not Resuscitate” (DNR) orders with patients. Although perceived self-efficacy (confidence) is a known prerequisite for behavioural change, little is understood about the confidence of physicians regarding DNR discussions. Subjects and methods: A survey of 217 internal medicine attendings and 132 housestaff at two teaching hospitals about their attitudes and confidence regarding DNR discussions. Results: Participants were significantly less confident about their ability to discuss DNR orders than to discuss consent for medical procedures (p Conclusion: We conclude that physicians’ confidence regarding DNR discussions is low compared with their confidence regarding other medical discussions and that confidence varies by sex and perceived difficulty of the task. Efforts to improve DNR discussions should explore the need to tailor educational interventions to fit these characteristics.
TL;DR: This paper argues that suspension of puberty is not only not unethical: if it is likely to improve the child’s quality of life and even save his or her life, then it is indeed unethical to defer treatment.
Abstract: Transgender children who are not treated for their condition are at high risk of violence and suicide. As a matter of survival, many are willing to take whatever help is available, even if this is offered by illegal sources, and this often traps them into the juvenile criminal system and exposes them to various threats. Endocrinology offers a revolutionary instrument to help children/adolescents with gender identity disorder: suspension of puberty. Suspension of puberty raises many ethical issues, and experts dissent as to when treatment should be commenced and how children should be followed up. This paper argues that suspension of puberty is not only not unethical: if it is likely to improve the child's quality of life and even save his or her life, then it is indeed unethical to defer treatment.
TL;DR: Variation across research ethics boards (REBs) in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy.
Abstract: Introduction: Variation across research ethics boards (REBs) in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy. Aim: To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction. Methods: Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions around a case study with open-ended responses. Interviews were recorded, transcribed and coded manually. Results: Fourteen sites (47%) required individual patient consent for the study to proceed as proposed. Three (10%) indicated that their response would depend on how potentially identifying variables would be managed. Eleven sites (38%) did not require consent. Two (7%) suggested a notification and opt-out process. Most stated that consent would be required if identifiable information was being abstracted from the record. Among those not requiring consent, there was substantial variation in recognising that the abstracted information could potentially indirectly re-identify individuals. Concern over access to medical records by an outside individual was also associated with requirement for consent. Eighteen sites (60%) required full committee review. Sixteen (53%) allowed an external research assistant to abstract information from the health record. Conclusions: Large variation was found across sites in the requirement for consent for research involving access to medical records. REBs need training in best practices for protecting privacy and confidentiality in health research. A forum for REB chairs to confidentially share concerns and decisions about specific studies could also reduce variation in decisions.
TL;DR: The paper considers the need for orthopraxy in the use of clinical photography.
Abstract: The increasing use of digital image recording devices, whether they are digital cameras or mobile phone cameras, has democratised clinical photography in the UK. However, when non-professional clinical photographers take photographs of patients the issues of consent and confidentiality are either ignored or given scant attention. Whatever the status of the clinician, the taking of clinical photographs must be practised within the context of a professional etiquette. Best practice recognises the need for informed consent and the constraints associated with confidentiality. Against the background of the poverty of the current discourse of these issues, as presented during the Valentine GMC Fitness to Practice1 hearing, the paper considers the need for orthopraxy in the use of clinical photography.