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Canada has recently published a new Clinical Practice Guideline on the diagnosis and management of brain death. It states that consent is not necessary to carry out the interventions required to make the diagnosis. A supporting article not only sets out the arguments for this but also contends that ‘UK laws similarly carve out an exception, excusing clinicians from a prima facie duty to get consent’. This is supplemented by the claim that recent court decisions in the UK similarly confirm (...) that consent is not required, referencing two judgements in _Battersbee_. We disagree with the authors’ interpretation of the law on consent in the UK and argue that there is nothing in _Battersbee_ to support the conclusion that consent to testing is not necessary. Where there is a disagreement about testing for brain death in the UK, court authorisation is required. (shrink)

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This paper is particularly concerned with shame, sometimes considered the ‘master emotion’, and its possible role in affecting the consent process, specifically where that shame relates to the issue of diminished health literacy. We suggest that the absence of exploration of affective issues in general during the consent process is problematic, as emotions commonly impact upon our decision-making process. Experiencing shame in the healthcare environment can have a significant influence on choices related to health and healthcare, and may lead to (...) discussions of possibilities and alternatives being closed off. In the case of impaired health literacy we suggest that it obstructs the narrowing of the epistemic gap between clinician and patient normally achieved through communication and information provision. Health literacy shame prevents acknowledgement of this barrier. The consequence is that it may render consent less effective than it otherwise might have been in protecting the person's autonomy. We propose that the absence of consideration of health literacy shame during the consent process diminishes the possibility of the patient exerting full control over their choices, and thus bodily integrity. (shrink)

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In her interesting paper on cross-jurisdictional legal approaches to brain death, Ariane Lewis considers whether informed consent is required for DNC testing in the UK, and proposes that it is not...

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In the context of critically ill children, Baines contended that the best interests test was neither objective nor coherent, and thus of little applicability in making end-of-life decisions. In reply, Bridgeman attempted to refute these claims through legal analysis and contended that the doctrine allowed for responsive, fact-specific, context-sensitive and prudential reasoning. This paper is a response to Bridgeman, and argues that an examination of case law reveals the subjective and value-laden nature of the test. Courts must make decisions in (...) contested cases, but there is no reason to hold that a judge can divine the best interests of a critically ill child better than either parents or medical staff. This paper analyses a number of cases where judicial decisions appear at odds with the child's best interests, and argues that as the outcome depends upon the value system of the decision-maker the test is unhelpful in contested end-of-life cases. (shrink)

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The decision of the House of Lords in Gillick v West Norfolk Area Health Authority carved out a safe space for competent minors to confidentially access sexual and reproductive health care and advice in the UK. Ireland is one of the few common law jurisdictions that has not endorsed Gillick or a similar mature minor doctrine, nor has it securely legislated for the right to consent of those aged 16 and 17 years. The legal lacuna created by this deficiency has (...) left young persons in Ireland seeking sexual and reproductive healthcare, and the clinicians who provide this, in a challenging place. While this void has been partially filled with policy statements by bodies such as the Irish College of General Practitioners and the Health Service Executive, nonetheless the legal shortcomings leave both a sense of insecurity, and real world difficulties for adolescents seeking to access to sexual and reproductive healthcare. (shrink)

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The Health (Regulation of Termination of Pregnancy) Act 2018 was commenced on 01/01/2019 in Ireland. The Act provides for legal termination of pregnancy under defined circumstances including for any reason at< 12 weeks gestation; and where two doctors agree there is ‘a condition affecting the foetus that is likely to lead to the death of the foetus either before, or within 28 days of, birth’. As such, abortion for congenital anomaly (CA) can occur at a number of time points, (...) depending on the adjudged severity. Infants born with CAs frequently require significant medical intervention and account for a high proportion of admissions to paediatric intensive care units (PICUs). The purpose of this paper was to evaluate the number of infants with CAs admitted to an Irish PICU in the period before and after the implementation of the Act. All PICU admissions< 1 month of age to a single Irish paediatric hospital between 2012 and 2021 were analysed. CAs were recorded, and the periods before and after the commencement of the Act compared. We found a difference in admissions involving CAs, particularly those related to congenital heart disease involving single ventricle anatomy. It is plausible that this difference was as a result of improved access to abortion services following the implementation of the Act. This article explores the legal conditions related to the abortion of a foetus with a CA in Ireland, and the possible impact of the Independent Review of the Operation of the Health ( Regulation of Termination of Pregnancy) Act 2018. (shrink)

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The reality of current clinical practice in the UK is that where a patient’s family refuses to agree to testing for brain stem death (BD), such cases will ultimately end up in court. This situation is true of both adults and children and reinforced by recent legal cases. While recourse to the courts might be regrettable in such tragic cases, if public trust in the medical diagnosis of BD is to be maintained all aspects of the process must be conducted (...) in a way that is transparent and open to scrutiny. This is not an ‘ineffective expenditure’ of resources, but an essential element of a human rights-compliant legal system. (shrink)

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In 2010, President Obama instructed the Presidential Commission for the Study of Bioethical Issues to enquire into research carried out by the US Public Health Service in Guatemala between 1946 and 1948. These studies entailed the deliberate inoculation of unconsenting prisoners, mental asylum patients and soldiers, with venereal disease. There was also evidence of deception and secrecy. The Commission’s report describes the research as heinous, egregious, unconscionable and unjustifiable, and identified those responsible as morally blameworthy. However, this article argues that (...) the Commission was deficient in its historical analysis, and failed to appreciate particular disease and temporal factors that might cast the research in a slightly different light. This is not to exculpate the researchers, but rather to critique the Commission’s analysis. The straightforward narrative woven by the Commission does not accurately reflect the muddy ethical waters of the time, nor the utilitarian ethos that pervaded particular research agendas. The creation of a facile story denies to us a proper understanding of why events unfolded as they did, and as a consequence a potential lack of comprehension of those elements that might prevent unethical and harmful research practices from being conducted in the future. (shrink)

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While research on children is supported by many professional guidelines, international declarations and domestic legislation, when it is undertaken on children with no possibility of direct benefit it rests on shaky moral foundations. A number of authors have suggested that research enrolment is in the child's best interests, or that they have a moral duty or societal obligation to participate. However, these arguments are unpersuasive. Rather, I will propose in this paper that research participation by children seems most reasonable when (...) considered as an act of solidarity; a form of identification with, and provision of practical assistance to, those who are less well off. This is an articulation of the view that many children, and their parents, seem to take seriously the suffering of others, and wish to assist in advancing other children's wellbeing. Perhaps, by fostering an environment in which children are encouraged to take solidarity seriously, participation in research which holds out substantial hope of benefit to those less well off would come to be perceived as a behavioural norm rather than an exceptional practice. (shrink)

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