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    ABSTRACT: In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child's best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child's interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances.
    Health Care Analysis 11/2013; 22(3). DOI:10.1007/s10728-013-0267-y
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    ABSTRACT: There have been recent policy moves aimed at encouraging individuals to lead healthier lives. The Cabinet Office has set up a 'nudge unit' with health as one of its priorities and behavioural approaches have started to be integrated into health-related domestic policy in a number of areas. Behavioural research has shown that that the way the environment is constructed can shape a person's choices within it. Thus, it is hoped that, by using insights from such research, people can be nudged towards making decisions which are better for their health. This article outlines how nudges can be conceived of as part of an expanding arsenal of health-affecting regulatory tools being used by the Government and addresses some concerns which have been expressed regarding behavioural research-driven regulation and policy. In particular, it makes the case that, regardless of new regulatory and policy strategies, we cannot escape the myriad of influences which surround us. As such, we can view our health-affecting decisions as already being in some sense shaped and constructed. Further, it argues we may in fact have reason to prefer sets of health-affecting options which have been intentionally designed by the state, rather than those that stem from other sources or result from random processes. Even so, in closing, this article draws attention to the largely unanswered questions about how behavioural research translates into policy and regulatory initiatives.
    Medical Law Review 09/2013; 21(4). DOI:10.1093/medlaw/fwt022
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    ABSTRACT: Where a decision has been made to stop futile treatment of critically ill patients on an intensive care unit - what is termed withdrawal of treatment in the UK - yet no doctor is available to perform the actions of withdrawal, nurses may be called upon to perform key tasks. In this paper I present two moral justifications for this activity by offering answers to two major questions. One is to ask if it can be in patients' best interests for nurses to be the key actors in withdrawal of life-sustaining treatment. The other is to ask if there is any reason that the nursing profession should not undertake such tasks if this is so. Both these questions require the resolution of weighty moral and philosophical issues. Thus, while offering a serious attempt to provide moral justifications for nurses undertaking withdrawal, this paper also invites debate over both the aim of task division between nurses and doctors, and how we might decide what is in the best interests of patients.
    Nursing Philosophy 04/2013; 14(2):96-108. DOI:10.1111/j.1466-769X.2012.00553.x
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    ABSTRACT: Background: Withdrawal of life saving medical treatment is a common modality of death within UK paediatric intensive care units (PICUs). The majority of treatment withdrawals are carried out by medical staff, usually the consultant in charge of the child's care. Aim: To assess current practice of experienced PICU nurses performing the key tasks in treatment withdrawal once the decision has been made and its legal implications. Design and Method: The study was divided into three chronologically successive phases. In phase 1, a 12-item paper survey was circulated to nursing staff on a UK PICU. In phase 2, a three-item survey regarding current practice was sent to nurse managers on 22 UK PICUs. In phase 3, analysis of legal issues related to nurses withdrawing treatment was undertaken. Results: Poor response rates to both surveys limited their value; however, they may stimulate discussion of the issue within nursing. Phase 1 received 15 of 100 (15%) responses; open-ended questions highlighted practitioner concerns. Eight of twenty-two (36%) responses for phase 2 showed no consistent approach to the issue nationally. Legal analysis indicated that the law was untested in this area and nurses would be advised to withdraw treatment only if following a documented medical plan. Risks of legal and regulatory action could be reduced by formulating clear guidelines. Conclusion: PICU nurses could potentially enact withdrawal, but discussion is needed to resolve uncertainties. Relevance to Clinical Practice: National Guidelines from within the PICU community could assist nurses participating in treatment withdrawal.
    Nursing in Critical Care 01/2013; 18(1):43-51. DOI:10.1111/j.1478-5153.2012.00532.x
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    ABSTRACT: Non-invasive prenatal testing for single gene disorders is now clearly on the horizon. This new technology offers obvious clinical benefits such as safe testing early in pregnancy. Before widespread implementation, it is important to consider the possible ethical implications. Four hypothetical scenarios are presented that highlight how ethical ideals of respect for autonomy, privacy and fairness may come into play when offering non-invasive prenatal testing for single gene disorders. The first scenario illustrates the moral case for using these tests for 'information only', identifying a potential conflict between larger numbers of women seeking the benefits of the test and the wider social impact of funding tests that do not offer immediate clinical benefit. The second scenario shows how the simplicity and safety of non-invasive prenatal testing could lead to more autonomous decision-making and, conversely, how this could also lead to increased pressure on women to take up testing. In the third scenario we show how, unless strong safeguards are put in place, offering non-invasive prenatal testing could be subject to routinisation with informed consent undermined and that woman who are newly diagnosed as carriers may be particularly vulnerable. The final scenario introduces the possibility of a conflict of the moral rights of a woman and her partner through testing for single gene disorders. This analysis informs our understanding of the potential impacts of non-invasive prenatal testing for single gene disorders on clinical practice and has implications for future policy and guidelines for prenatal care.European Journal of Human Genetics advance online publication, 28 November 2012; doi:10.1038/ejhg.2012.250.
    European journal of human genetics: EJHG 11/2012; 21(7). DOI:10.1038/ejhg.2012.250
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    ABSTRACT: Aim: To explore whether and how health visitors experience ethical tensions between the public health agenda and the need to be responsive to individual clients. Background: Current health policy in England gives health visitors a key role in implementing the government's public health agenda. Health visitors are also required by their Professional Code to respond to the health-related concerns and preferences of their individual clients. This may generate tensions. Methods: A total of 17 semi-structured individual interviews covering participants' experiences of implementing public health interventions and perceptions of the ethical tensions involved were conducted. Interviews were audio-recorded, transcribed and analysed thematically using a Framework approach. Findings: Health visitors raised a number of ethical concerns, which they attributed to organisational resource allocation and the introduction of protocols and targets relating to public health goals. They did not always regard it as appropriate to raise topics that employing organisations had identified as public health priorities with particular clients for whom they were not priorities, or who had other more pressing needs. They noted that resources that were allocated towards reaching public health targets were unavailable for clients who needed support in other areas. Organisational protocols designed to monitor performance put pressure on health visitors to prioritise achieving targets and undermined their ability to exercise professional judgement when supporting individual clients. This had implications for health visitors' sense of professionalism. Health visitors saw trusting relationships as key to effective health visiting practice, but the requirement to implement public health priorities, combined with a lack of resources in health visiting, eroded their ability to form these. Policies need to be evaluated with regard to their impact upon a broader range of processes and outcomes than public health goals. The erosion of health visitors' professional values and ability to develop relationships with clients could have numerous adverse implications.
    Primary Health Care Research & Development 08/2012; 14(2):1-12. DOI:10.1017/S1463423612000400
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    ABSTRACT: Aim: To explore how well professional education and post-qualification clinical supervision support equips health visitors to deal with ethical tensions associated with implementing the public health agenda while also being responsive to individual clients. Background: Current health policy in England gives health visitors a key role in implementing the government's public health agenda. Health visitors are also required by their Professional Code to respond to the health-related concerns and preferences of their individual clients. This generates a number of public health-related ethical tensions. Methods: Exploratory cross-sectional qualitative (interpretive) study using 29 semi-structured individual interviews with health visitors, practice teachers and university lecturers exploring how well health visitors' professional education and post-qualification clinical supervision support equips them for dealing with these ethical tensions and whether they thought further ethics education was needed. Interviews were audio-recorded, transcribed and analysed thematically using a Framework approach. Findings: Health visitors' professional education did not always equip them to deal with ethical tensions, which arose from delivering public health interventions to their clients. However, the majority of participants thought that ethics could not be taught in a way that would equip health visitors for every situation and that ongoing post-qualification clinical supervision support was also needed, particularly in the first year after qualifying. The amount of post-qualification support available to practising health visitors was variable with some health visitors unable to access such support due to their working circumstances and pressures on staff time. Literature on the ethical tensions associated with evidence-based practice; public health ethics and ethics of care might be useful for health visitors in gaining greater understanding of the ethical tensions they face. This could be introduced as part of health visitors' professional education or on post-qualification study days.
    Primary Health Care Research & Development 07/2012; 14(1):1-13. DOI:10.1017/S1463423612000278
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    ABSTRACT: This study reports on qualitative research conducted in the UK with people with Parkinson's Disease and their relatives on the subject of "sham surgery." It explores attitudes toward sham surgery and reasoning about hypothetical participation in a sham-controlled trial. Results showed that attitudes toward sham surgery may not necessarily predict trial participation behavior. A small majority of interviewees deemed sham surgery ethically acceptable with certain provisos, but hypothetical participation was driven primarily by disease severity and a lack of standard treatment options, with a preference for receiving the real surgery over sham. Ethical implications for patient equipoise and the autonomy of patients' research participation decisions are discussed.
    Journal of Empirical Research on Human Research Ethics 07/2012; 7(3):15-28. DOI:10.1525/jer.2012.7.3.15
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    ABSTRACT: Recent scientific advances mean the widespread introduction of non-invasive prenatal diagnosis (NIPD) for chromosomal aneuploidies may be close at hand, raising the question of how NIPD should be introduced as part of antenatal care pathways for pregnant women. In this paper, the authors examine the ethical implications of three hypothetical models for using NIPD for aneuploidy in state-funded healthcare systems and assess which model is ethically preferable. In comparing the models, the authors consider their respective timings; how each model would fit with current screening and diagnostic tests offered to pregnant women; the implications of offering NIPD at different stages of pregnancy; and the potential for each model to support reproductive autonomy and informed decision-making. The authors conclude by favouring a model that would be offered at 11-13 weeks gestation, alongside existing combined screening, provided that this is accompanied by measures to maximise informed decision-making, for example, provision of adequate pretest and post-test counselling.
    Journal of medical ethics 06/2012; 38(10):614-8. DOI:10.1136/medethics-2011-100180
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    ABSTRACT: In Western societies advance directives are widely recognised as important means to extend patient self-determination under circumstances of incapacity. Following other countries, England and France have adopted legislation aiming to clarify the legal status of advance directives. In this paper, I will explore similarities and differences in both sets of legislation, the arguments employed in the respective debates and the socio-political structures on which these differences are based. The comparison highlights how different legislations express different concepts emphasising different values accorded to the duty to respect autonomy and to protect life, and how these differences are informed by different socio-political contexts. Furthermore each country associates different ethical concerns with ADs which raise doubts about whether these directives are a theoretical idea which is hardly applicable in practice.
    Health Care Analysis 05/2012; 22(1). DOI:10.1007/s10728-012-0210-7
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