Health Care Ethics Consortium of Georgia ...ethics in action

Glenn McGee forsees a slippery slope of employer discrimination for health behaviors that raise insurance premiums.

The Treatment Escalation Plan (TEP) was introduced into our trust in an attempt to improve patient involvement and experience of their treatment in hospital and to embrace and clarify a wider remit of treatment options than the Do Not Resuscitate (DNR) order currently offers. Our experience suggests that the patient and family are rarely engaged in DNR discussions. This is acutely relevant considering that the Mental Capacity Act (MCA) now obliges these discussions to take place. The TEP is a form that the doctor completes, ideally with the competent patient or close relative, documenting what treatment options would be appropriate if that patient were to become acutely unwell. Ventilation of the lungs, cardiac resuscitation, renal replacement therapy, intravenous fluids and antibiotics are all discussed. The study evaluated patient and relative experiences with the TEP. 55 patients or their relatives were interviewed regarding their experience of the TEP and thoughts regarding the process. 96% of patients and relatives evaluated thought that the TEP was a good idea. Free text comments were all positive and only 34% of patients claimed to feel anxious when completing the form. Following this study, the TEP has been expanded hospital wide and into the community within our trust. Discussions are currently taking place in hospitals within our region to introduce the TEP form into other local trusts.

Asperger syndrome (AS) is an autistic spectrum condition that shares the range of social impairments associated with classic autism widely regarded as disabling, while also often giving rise to high levels of ability in areas such as maths, science, engineering and music. The nature of this striking duality of disability and ability is examined, along with its implications for our thinking about disability and the relevance of levels and kinds of disability to reproductive choices. In particular, it may be seen as posing a challenge to John Harris's influential position in reproductive ethics relating to disability. The paper argues that if, as Harris maintains, there is a quite general moral obligation to avoid bringing disabled lives into the world regardless of the level of disability, then AS must be seen as having a strong claim to be exempt from such an obligation. However, a broader critique of Harris's position leads to the conclusion that, in fact, this putative obligation does not exist.

For many, Thomas Beauchamp and James Childress have elaborated moral reasoning by using the four principles whereby all substantive problems of medical ethics (and of ethics more generally) can be properly analysed and cogent philosophical solutions for the problems can be found. It seems that their ‘principlism’ gets updated, with better features being added during the course of the six editions of Principles of Biomedical Ethics. Nonetheless, Beauchamp and Childress seem to have been losing their way when it comes to the common-morality justification, which is the epistemological (and perhaps metaphysical) backbone of their method, and this is shown more vividly in their most recent (2009) edition of Principles of Biomedical Ethics. The author points out what he calls the problem of ‘thick in status, thin in content’ in principlism. The problem exists because principlism cannot adequately explain how the prescriptive sense of common morality it supports is consistent with the existence of what Beauchamp and Childress call the ‘legitimate moral diversity in the world’. Because of this problem, first, the practical end that principlism allegedly accomplishes (ie, providing practical moral guidelines in a relatively ‘thick’ content, based on common morality) is frustrated, and, second, principlism makes itself the method of common morality de jure and of moral pluralism de facto.

Genetic testing practices are increasingly advancing clinical medicine. This process of ‘routinisation of genetics’ has been conceived as a medical and ethical problem mainly because of the assumption that non-geneticists might lack the necessary skills to provide these services. In particular, the relevant theoretical knowledge in clinical genetics is viewed as insufficient in general practitioners and physicians from other specialities. Empirical findings seem to indicate significant variations not only in theoretical but also in practical knowledge between geneticists and non-geneticists. Several fields of practical knowledge—regarding for example the focus of clinical action, the relevance of therapeutic action or the normative framework—can be identified that are or could be areas of conflict when the routinisation of genetic services proceeds. From an ethical point of view, these variations in know how and background are especially relevant whenever the respective genetic service is concerned with medical information of exceptional normative quality, such as, for example, in prenatal genetic screening and diagnosis of untreatable conditions. Here, the clinically acquired practical knowledge of the non-geneticist could be particularly misleading insofar as there is no relation to therapy and—in a narrow sense—no clinical utility to be assessed. Non-geneticists need a chance to acquire the relevant theoretical and practical knowledge in order to understand and fulfil their own duties in the respective situations in a way that secures the important rights at stake of their patients and clients.

The recent report of the UK government's Organ Donation Taskforce is in favour of continuing with the current organ donation system rather than changing to an opt-out system where people are assumed to be willing to donate. How did it reach this decision and is it correct?

Objective

To determine the attitudes of Egyptian patients regarding their participation in research and with the collection, storage and future use of blood samples for research purposes.

Design

Cross-sectional survey.

Study population

Adult Egyptian patients (n=600) at rural and urban hospitals and clinics.

Results

Less than half of the study population (44.3%) felt that informed consent forms should provide research participants the option to have their blood samples stored for future research. Of these participants, 39.9% thought that consent forms should include the option that future research be restricted to the illness being studied. A slight majority (66.2%) would donate their samples for future genetic research. Respondents were more favourable towards having their blood samples exported to other Arab countries (62.0%) compared with countries in Europe (41.8%, p<0.001) and to the USA (37.2%, p<0.001).

Conclusions

This study shows that many individuals do not favour the donation of a blood sample for future research. Of those who do approve of such future research, many favour a consent model that includes an option restricting the future research to the illness being studied. Also, many Egyptians were hesitant to have their blood samples donated for genetic research or exported out of the Arab region to the USA and European countries. Further qualitative research should be performed to determine the underlying reasons for many of our results.

Reflecting on a three year long exploratory research of ethics committees in the Czech Republic authors discuss the current role and identity of research ethics committees. The research of Czech ethics committees focused on both self-presentation and self-understanding of ECs members, and how other stakeholders (representatives of the pharmaceutical industry) view them. The exploratory research was based on formal and informal communication with the members of the ethics committees. Members of the research team took part at six regular voluntary meetings of the ethics committees' members, organised by the Forum of Czech Ethics Committees, and at three summer schools of medical ethics. There were realised twenty-five semi-structured interviews as well as six focus group sessions and a participant observation of several regular meetings of three ethics committees. On the grounds of experience from the interviews a simple questionnaire survey was realised among the members of the ethics committees. The ethics committees comprise a community of members working voluntarily, without claims to remuneration or prestige; the unifying goal is protection of subjects of research. The principal working methods are dialogue and agreement. The members of the ethics committees thus, among other things, create an informal community, which can be to a certain extent seen as a Kantian ethical community in a weak sense. The phenomenon of ethics committees can also be described by terms of an epistemic community and a community of practice. These concepts, which are borrowed from other authors and areas, are used as a way how to think of ECs role and identity a bit differently and are meant as a contribution to the current international debate on the topic.

In dementia research evidence is mounting that therapeutic strategies that target moderate and even mild Alzheimer's disease may be missing the ‘therapeutic window’. Given that the neuropathology that leads to Alzheimer's disease probably begins somewhere between 10 and 15 years before symptoms manifest, many believe that the optimal therapeutic strategy would target persons in the earliest phases of disease development or even earlier. This would include, for example, persons with prodromal Alzheimer's and even persons who are deemed at risk. Given the nature of research involving the central nervous system, it is conceivable that some therapeutic investigations may involve an increase over minimal risk. This paper examines how, in dementia research, at-risk persons, although healthy, bring multiple and intersecting vulnerabilities to the prospect of research participation even though they are clinically healthy. Current guidelines for research ethics may not provide adequately for the nuances of ‘healthy individuals’ and their possible vulnerabilities. In the context of neurodegenerative disease, the fact of being ‘at risk’ alters the vulnerability profile in significant ways. While healthy persons who are at risk of developing dementia may not appear to warrant placement in the research category of vulnerable participants (alongside prisoners, pregnant women and children) careful regard for the vulnerabilities that arise as a result of the intersecting circumstances of being healthy and at risk of an incurable disease are worthy of increased attention and consideration, particularly as the research effort for the increasingly prevalent disease of Alzheimer's moves forward.

Clinical decision making is a challenging task that requires practical wisdom—the practised ability to help patients choose wisely among available diagnostic and treatment options. But practical wisdom is not a concept one typically hears mentioned in medical training and practice. Instead, emphasis is placed on clinical judgement. The author draws from Aristotle and Aquinas to describe the virtue of practical wisdom and compare it with clinical judgement. From this comparison, the author suggests that a more complete understanding of clinical judgement requires its explicit integration with goals of care and ethical values. Although clinicians may be justified in assuming that goals of care and ethical values are implicit in routine decision making, it remains important for training purposes to encourage habits of clinical judgement that are consciously goal-directed and ethically informed. By connecting clinical judgement to patients' goals and values, clinical decisions are more likely to stay focused on the particular interests of individual patients. To cultivate wise clinical judgement among trainees, educational efforts should aim at the integration of clinical judgement, communication with patients about goals of care, and ethical reasoning. But ultimately, training in wise clinical judgement will take years of practice in the company of experienced clinicians who are able to demonstrate practical wisdom by example. By helping trainees develop clinical judgement that incorporates patients' goals of care and ethical reasoning, we may help lessen the risk that ‘clinical judgement’ will merely express ‘the clinician's judgement.’

Can the view that medical science is more important than the individual properly persuade recruitment to trials? This paper considers the nature and interests of the person and their relationships to the concepts of science and society; and analyses a conception of value used to balance the interests of science and research subjects. The implications of arguments opposing the primacy of the individual are set out to indicate their implausibility; while the primacy principle is described to show its necessity in any moral society. Finally, the importance of fully informed consent to participate is explained with the requirement that the individual human life provide the criteria of moral value for human life.

This paper argues that the National Institute for Health and Clinical Excellence should not offer guidance in situations where there is insufficient evidence equipoise about the potential benefit of the treatment in question. This is broadly for two reasons. First, without knowing if the treatment is effective no cost-effectiveness judgement can be logically made. Second, the implementation of a population wide change in treatment where there is equipoise amounts to a de facto clinical trial that falls outside the Clinical Trials Regulations. As such there are strong ethical and possibly legal grounds for preventing such an outcome.

Guidance based upon insufficient evidence equipoise also impacts upon the clinical discretion possessed by individual medical professionals.

The history and genesis of major public clinical ethics controversies is intimately related to the publication of opinions and responses in media coverage. To provide a sample of public response in the media, this paper reports the results of a content analysis of letters to editors published in the four most prolific American newspapers for the Schiavo controversy. Opinions expressed in the letters sampled strongly supported the use of living wills and strongly condemned public attention to the case as well as political interventions. Letters tended to be against withdrawal of life support, proxy consent and associated procedures as well as against court decisions and legal procedures. In comparison with reports written by journalists, letters to editors contained fewer controversial claims about Schiavo''s neurological condition and behavioural repertoire but similar loaded language to describe withdrawal of life support. Distinct public discourses can be encountered in different stakeholders suggesting complex and extensive pluralism even within the media.

(Source: Journal of Medical Ethics)

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The history and genesis of major public clinical ethics controversies is intimately related to the publication of opinions and responses in media coverage. To provide a sample of public response in the media, this paper reports the results of a content analysis of letters to editors published in the four most prolific American newspapers for the Schiavo controversy. Opinions expressed in the letters sampled strongly supported the use of living wills and strongly condemned public attention to the case as well as political interventions. Letters tended to be against withdrawal of life support, proxy consent and associated procedures as well as against court decisions and legal procedures. In comparison with reports written by journalists, letters to editors contained fewer controversial clai...

This paper argues that the National Institute for Health and Clinical Excellence should not offer guidance in situations where there is insufficient evidence equipoise about the potential benefit of the treatment in question. This is broadly for two reasons. First, without knowing if the treatment is effective no cost-effectiveness judgement can be logically made. Second, the implementation of a population wide change in treatment where there is equipoise amounts to a de facto clinical trial that falls outside the Clinical Trials Regulations. As such there are strong ethical and possibly legal grounds for preventing such an outcome. Guidance based upon insufficient evidence equipoise also impacts upon the clinical discretion possessed by individual medical professionals. (Source: Journal o...

Can the view that medical science is more important than the individual properly persuade recruitment to trials? This paper considers the nature and interests of the person and their relationships to the concepts of science and society; and analyses a conception of value used to balance the interests of science and research subjects. The implications of arguments opposing the primacy of the individual are set out to indicate their implausibility; while the primacy principle is described to show its necessity in any moral society. Finally, the importance of fully informed consent to participate is explained with the requirement that the individual human life provide the criteria of moral value for human life. (Source: Journal of Medical Ethics)