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Aim: To discuss ethical issues related to a complex study (PROFID) involving the development of a new, partly artificial intelligence-based, prediction model to enable personalised decision-making about the implantation of an implantable cardioverter defibrillator (ICD) in postmyocardial infarction patients, and a parallel non-inferiority and superiority trial to test decision-making informed by that model., Method: The position expressed in this paper is based on an analysis of the PROFID trials using concepts from high-profile publications in the ethical literature., Results: We identify ethical issues related to the testing of the model in the treatment setting, and to both the superiority and the non-inferiority trial. We underline the need for ethical-empirical studies about these issues, also among patients, as a parallel to the actual trials. The number of ethics committees involved is an organisational, but also an ethical challenge., Conclusion: The PROFID trials, and probably other studies of similar scale and complexity, raise questions that deserve dedicated parallel ethics and social science research, but do not constitute a generic obstacle. A harmonisation procedure, comparable to the Voluntary Harmonization Procedure (VHP) for medication trials, could be needed for this type of trials., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: To evaluate the feasibility and effectiveness of the SHARE TO CARE (S2C) programme, a complex intervention designed for hospital-wide implementation of shared decision-making (SDM)., Design: Pre-post study., Setting: University Hospital Schleswig-Holstein (UKSH), Kiel Campus., Participants: Healthcare professionals as well as inpatients and outpatients from 22 departments of the Kiel Campus of UKSH., Interventions: The S2C programme is a comprehensive implementation strategy including four core modules: (1) physician training, (2) SDM support training for and support by nurses as decision coaches, (3) patient activation and (4) evidence-based patient decision aid development and integration into patient pathways. After full implementation, departments received the S2C certificate., Main Outcome Measures: In this paper, we report on the feasibility and effectiveness outcomes of the implementation. Feasibility was judged by the degree of implementation of the four modules of the programme. Outcome measures for effectiveness are patient-reported experience measures (PREMs). The primary outcome measure for effectiveness is the Patient Decision Making subscale of the Perceived Involvement in Care Scale (PICS PDM ). Pre-post comparisons were done using t-tests., Results: The implementation of the four components of the S2C programme was able to be completed in 18 of the 22 included departments within the time frame of the study. After completion of implementation, PICS PDM showed a statistically significant difference (p<0.01) between the means compared with baseline. This difference corresponds to a small to medium yet clinically meaningful positive effect (Hedges' g=0.2). Consistent with this, the secondary PREMs (Preparation for Decision Making and collaboRATE) also showed statistically significant, clinically meaningful positive effects., Conclusions: The hospital-wide implementation of SDM with the S2C-programme proved to be feasible and effective within the time frame of the project. The German Federal Joint Committee has recommended to make the Kiel model of SDM a national standard of care., Competing Interests: Competing interests: All authors received funding from the German Innovations Fund; FS, FG and JUR are co-founders of the SHARE TO CARE Patientenzentrierte Versorgung; KW received honoraria for being member of an advisory board for BMS on SDM; MC received consultancy fees from University Hospital Schleswig-Holstein LS is consultant for the Federal Ministry of Health (Germany), Federal Insurance Office and 4 statutory health insurance companies., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

In February 2022, the Court of Protection was faced with the question of whether a kidney transplant was in the best interests of William Verden. The case highlighted the legal, ethical and clinical complexities of treating potential kidney transplant patients with impaired decision-making. Above all, it exposed the potential risk of discrimination on the basis of disability when treatment decisions in relation to potential kidney recipients with impaired capacity are being made. In this paper, we draw on the Verden case to (1) examine the role of the Court of Protection in cases relating to patients with impaired decision-making capacity who require a transplant, (2) to highlight the lack of empirical data on patients who have faced inequitable access to transplant and (3) highlight the shortcomings of the existing legal and regulatory framework in England and Wales guiding clinical decision making for patients in William's position. We consequently argue that there is a clear need for action to ensure equitable access to transplant for those in William's position. Furthermore, we suggest that there is a responsibility incumbent on policy makers and clinicians alike to develop a meaningful, and meaningfully operational, framework centred on preventing discrimination against potential organ recipients based on their decision-making capacity., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

The article provides information on a visual tool which aims to help patients make decisions about treatment. It is stated that the visual tool illustrates health risks and benefits through the utilization of models and numerical analysis. A sample of the tool which contains smiley symbols is also shown in the article.

The article discusses the cost-effectiveness analysis of echocardiographic risk stratification for early surgery with endocarditis. It assesses the cost-effectiveness of echocardiography as a risk-stratification tool that helps in decision making. It tackles the comparison between surgery for high-risk patients based on clinical factors and surgery for high-risk patients based on echocardiograhic findings. Results show that the latter is a cost-attractive strategy for infective endocarditis.

Objective: To examine the clinical and epidemiological literature addressing contraceptive method change or discontinuation and to assess whether the documented reasons reflected women's experiences.Methods: Major databases including Medline and PsycINFO were searched using keywords related to contraception and discontinuation, adherence and satisfaction, for articles published between January 2003 and February 2013. Studies in developed countries that focused on women of reproductive age and reasons for method change or discontinuation were included. Reasons reported were categorised and examined.Results: A total of 123 papers were reviewed in detail. Medical terminology was generally used to describe reasons for method discontinuation. The top two reported reasons were bleeding and pregnancy, but there was a lack of consensus about the categorisation of reasons. Broad categories that were not self-explanatory were included in more than half of the papers, often without further explanation. Only 12 studies expanded on categories containing 'other', 'non-medical' or 'personal' reasons. Eight papers included categories that attributed discontinuation to the participant, such as 'dissatisfied with method'.Conclusions: Studies of reasons for discontinuation of contraceptives do not well describe women's specific reasons. Studies rely heavily on medical terms and often fail to document women's subjective experiences. Future studies should create an opportunity for women to articulate their non-medical reasons in their own words, including those related to their sexual lives. Furthermore, researchers should distinguish, if possible, between reasons for discontinuation of a method and reasons for ceasing participation in a research study. [ABSTRACT FROM AUTHOR]

Background: Children with medical complexity is an increasing population whose parents and healthcare providers face multiple decisions. Shared decision-making is a process where patients, their families and healthcare providers collaborate to make decisions based on clinical evidence and informed preferences of the family. Shared decision-making has benefits for the child, family and healthcare providers, including improved parental understanding of the child's difficulties, increased participation, improved coping skills and more efficient healthcare use. It is, however, poorly implemented., Aims and Methods: A scoping review was conducted to explore shared decision-making for children with medical complexity in community health services, including how shared decision-making is defined in research, how it is implemented, including barriers and facilitators and recommendations for research. Six databases were systematically searched for papers published in English up to May 2022: Medline, CINAHL, EMBASE, PsycINFO, PubMed, Cochrane Database of Systematic Reviews and sources of grey literature. The review is reported according to the Preferred Reporting Items for Scoping Reviews., Results: Thirty sources met the inclusion criteria. Most factors can either be a facilitator or barrier to shared decision-making depending on the context. Two significant barriers to shared decision-making in this population include uncertainty about the child's diagnosis, prognosis, and treatment options and the presence of hierarchy and power imbalance during clinical encounters with healthcare providers. Further influencing factors include continuity of care, the availability of accurate, accessible, adequate, and balanced information and the interpersonal and communication skills of parents and healthcare providers., Conclusion: Uncertainty about diagnosis, prognosis and treatment outcomes for children with medical complexity are additional challenges to the known barriers and facilitators to shared decision-making in community health services. Effective implementation of shared decision-making requires advancement of the evidence base for children with medical complexity, reducing power imbalance in clinical encounters, improving continuity of care, and improving the availability and accessibility of information resources., Competing Interests: Competing interests: No, there are no competing interests., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Pickering et al 's paper argues that the capacity of the decision-maker is the sole consideration in whether a decision should stand, and that the risk of the decision should not be considered. This argument ignores the existence of the player who is of the view that a decision is not wise. This paper argues that patient autonomy is not the sole determinant of whether a person is able to make an unwise decision, particularly in healthcare where there are always others affected by the patient decision. Rather than asserting that patients have an unfettered autonomous choice on clinical decisions this paper argues that these decisions should be looked at through the lens of quality in health care that has proposed four parameters to be balanced; the patient experience, wise use of resources, the effect on public health and the clinician experience., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

A recent paper by Teresa Baron and Geoffrey Dierckxsens (2021) argues that puberty blockers and hormone therapy should be disallowed before adulthood on prudential and consent-related grounds. This response contends that their argument fails because it is predicated on unsupported premises and misinterpretations of the available evidence. There is no evidence that a large proportion of pubertal and postpubertal youths later discontinue medical transition. Meaningful assent is a viable and commonly accepted alternative to meaningful consent in paediatric bioethics. And finally, the primary purpose of transition-related interventions is to actualise youths' gendered self-image, not treat an underlying mental illness., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Quality improvement (QI) projects often employ statistical process control (SPC) charts to monitor process or outcome measures as part of ongoing feedback, to inform successive Plan-Do-Study-Act cycles and refine the intervention (formative evaluation). SPC charts can also be used to draw inferences on effectiveness and generalisability of improvement efforts (summative evaluation), but only if appropriately designed and meeting specific methodological requirements for generalisability. Inadequate design decreases the validity of results, which not only reduces the chance of publication but could also result in patient harm and wasted resources if incorrect conclusions are drawn. This paper aims to bring together much of what has been written in various tutorials, to suggest a process for using SPC in QI projects. We highlight four critical decision points that are often missed, how these are inter-related and how they affect the inferences that can be drawn regarding effectiveness of the intervention: (1) the need for a stable baseline to enable drawing inferences on effectiveness; (2) choice of outcome measures to assess effectiveness, safety and intervention fidelity; (3) design features to improve the quality of QI projects; (4) choice of SPC analysis aligned with the type of outcome, and reporting on the potential influence of other interventions or secular trends. These decision points should be explicitly reported for readers to interpret and judge the results, and can be seen as supplementing the Standards for Quality Improvement Reporting Excellence guidelines. Thinking in advance about both formative and summative evaluation will inform more deliberate choices and strengthen the evidence produced by QI projects. [ABSTRACT FROM AUTHOR]

In an earlier paper entitled Harm is all you need?, I used an analysis of English law to claim that the harm threshold was an unsuitable mediator of the best interests test when deciding if parental decisions should be overruled. In this paper I respond to a number of commentaries of that paper, and extend my discussion to consider the claim that the harm threshold gives appropriate normative weight to the interests of parents. While I accept that parents have some rights over their children, I argue these are dependent on parents' duties to benefit their children. While many such benefits are understood pluralistically, and are thus within parents' ambit to decide, I claim that health benefits are ordinally different, because they play a foundational role in the flourishing of an individual. In the light of this, clinicians have the moral authority to override parental refusals, although in some cases abstaining from exercising this authority may be a pragmatic way to maintain parental engagement and ensure our ability to benefit the child in future. [ABSTRACT FROM AUTHOR]

Background Patient decision aids (PDAs) are evidence-based tools designed to help patients make specific and deliberated choices among healthcare options. The International Patient Decision Aid Standards (IPDAS) Collaboration review papers and Cochrane systematic review of PDAs have found significant gaps in the reporting of evaluations of PDAs, including poor or limited reporting of PDA content, development methods and delivery. This study sought to develop and reach consensus on reporting guidelines to improve the quality of publications evaluating PDAs. Methods An international workgroup, consisting of members from IPDAS Collaboration, followed established methods to develop reporting guidelines for PDA evaluation studies. This paper describes the results from three completed phases: (1) planning, (2) drafting and (3) consensus, which included a modified, two-stage, online international Delphi process. The work was conducted over 2 years with bimonthly conference calls and three inperson meetings. The workgroup used input from these phases to produce a final set of recommended items in the form of a checklist. Results The SUNDAE Checklist (Standards for UNiversal reporting of patient Decision Aid Evaluations) includes 26 items recommended for studies reporting evaluations of PDAs. In the two-stage Delphi process, 117/143 (82%) experts from 14 countries completed round 1 and 96/1 17 (82%) completed round 2. Respondents reached a high level of consensus on the importance of the items and indicated strong willingness to use the items when reporting PDA studies. Conclusion The SUNDAE Checklist will help ensure that reports of PDA evaluation studies are understandable, transparent and of high quality. A separate Explanation and Elaboration publication provides additional details to support use of the checklist. [ABSTRACT FROM AUTHOR]

A growing number of bioethics papers endorse the harm threshold when judging whether to override parental decisions. Among other claims, these papers argue that the harm threshold is easily understood by lay and professional audiences and correctly conforms to societal expectations of parents in regard to their children. English law contains a harm threshold which mediates the use of the best interests test in cases where a child may be removed from her parents. Using Diekema's seminal paper as an example, this paper explores the proposed workings of the harm threshold. I use examples from the practical use of the harm threshold in English law to argue that the harm threshold is an inadequate answer to the indeterminacy of the best interests test. I detail two criticisms: First, the harm standard has evaluative overtones and judges are loath to employ it where parental behaviour is misguided but they wish to treat parents sympathetically. Thus, by focusing only on 'substandard' parenting, harm is problematic where the parental attempts to benefit their child are misguided or wrong, such as in disputes about withdrawal of medical treatment. Second, when harm is used in genuine dilemmas, court judgments offer different answers to similar cases. This level of indeterminacy suggests that, in practice, the operation of the harm threshold would be indistinguishable from best interests. Since indeterminacy appears to be the greatest problem in elucidating what is best, bioethicists should concentrate on discovering the values that inform best interests. [ABSTRACT FROM AUTHOR]

It has recently been reported that some hospitals in the UK have placed a blanket restriction on the provision of maternal request caesarean sections (MRCS) as a result of the COVID-19 pandemic. Pregnancy and birthing services are obviously facing challenges during the current emergency, but we argue that a blanket ban on MRCS is both inappropriate and disproportionate. In this paper, we highlight the importance of MRCS for pregnant people's health and autonomy in childbirth and argue that this remains crucial during the current emergency. We consider some potential arguments-based on pregnant people's health and resource allocation-that might be considered justification for the limitation of such services. We demonstrate, however, that these arguments are not as persuasive as they might appear because there is limited evidence to indicate either that provision of MRCS is always dangerous for pregnant people in the circumstances or would be a substantial burden on a hospital's ability to respond to the pandemic. Furthermore, we argue that even if MRCS was not a service that hospitals are equipped to offer to all pregnant persons who seek it, the current circumstances cannot justify a blanket ban on an important service and due attention must be paid to individual circumstances., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Tragic choices arise during the COVID-19 pandemic when the limited resources made available in acute medical settings cannot be accessed by all patients who need them. In these circumstances, healthcare rationing is unavoidable. It is important in any healthcare rationing process that the interests of the community are recognised, and that decision-making upholds these interests through a fair and consistent process of decision-making. Responding to recent calls (1) to safeguard individuals' legal rights in decision-making in intensive care, and (2) for new authoritative national guidance for decision-making, this paper seeks to clarify what consistency and fairness demand in healthcare rationing during the COVID-19 pandemic, from both a legal and ethical standpoint. The paper begins with a brief review of UK law concerning healthcare resource allocation, considering how community interests and individual rights have been marshalled in judicial deliberation about the use of limited health resources within the National Health Service (NHS). It is then argued that an important distinction needs to be drawn between procedural and outcome consistency, and that a procedurally consistent decision-making process ought to be favoured. Congruent with the position that UK courts have adopted for resource allocation decision-making in the NHS more generally, specific requirements for a procedural framework and substantive triage criteria to be applied within that framework during the COVID-19 pandemic are considered in detail., Competing Interests: Competing interests: CN and MS are members of the Thames Valley Priorities Committee. MD and MS are members of clinical ethics advisory groups that have developed policies and procedures on the allocation of intensive care resources during the COVID-19 pandemic., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

In this paper I reply to Tony Hope's response to my non-identity paper, aiming to clarify the nature of my objections, and also to address, briefly, Hope's suggestion that the implications of my view are that any book written for a lay audience ought to seek to present a 'balanced overview'. Essentially, I suggest that there may be a pro tanto consideration in favour of such an approach, but this would only be one consideration, to be weighed against competing considerations. [ABSTRACT FROM AUTHOR]

COVID-19 is reducing the ability to perform surgical procedures worldwide, giving rise to a multitude of ethical, practical and medical dilemmas. Adapting to crisis conditions requires a rethink of traditional best practices in surgical management, delving into an area of unknown risk profiles. Key challenging areas include cancelling elective operations, modifying procedures to adapt local services and updating the consenting process. We aim to provide an ethical rationale to support change in practice and guide future decision-making. Using the four principles approach as a structure, Medline was searched for existing ethical frameworks aimed at resolving conflicting moral duties. Where insufficient data were available, best guidance was sought from educational institutions: National Health Service England and The Royal College of Surgeons. Multiple papers presenting high-quality, reasoned, ethical theory and practice guidance were collected. Using this as a basis to assess current practice, multiple requirements were generated to ensure preservation of ethical integrity when making management decisions. Careful consideration of ethical principles must guide production of local guidance ensuring consistent patient selection thus preserving equality as well as quality of clinical services. A critical issue is balancing the benefit of surgery against the unknown risk of developing COVID-19 and its associated complications. As such, the need for surgery must be sufficiently pressing to proceed with conventional or non-conventional operative management; otherwise, delaying intervention is justified. For delayed operations, it is our duty to quantify the long-term impact on patients' outcome within the constraints of pandemic management and its long-term outlook., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Key ethical challenges for healthcare workers arising from the COVID-19 pandemic are identified: isolation and social distancing, duty of care and fair access to treatment. The paper argues for a relational approach to ethics which includes solidarity, relational autonomy, duty, equity, trust and reciprocity as core values. The needs of the poor and socially disadvantaged are highlighted. Relational autonomy and solidarity are explored in relation to isolation and social distancing. Reciprocity is discussed with reference to healthcare workers' duty of care and its limits. Priority setting and access to treatment raise ethical issues of utility and equity. Difficult ethical dilemmas around triage, do not resuscitate decisions, and withholding and withdrawing treatment are discussed in the light of recently published guidelines. The paper concludes with the hope for a wider discussion of relational ethics and a glimpse of a future after the pandemic has subsided., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Infants are unable to make their own decisions or express their own wishes about medical procedures and treatments. They rely on surrogates to make decisions for them. Who should be the decision-maker when an infant's biological parents are also minors? In this paper, we analyse a case in which the biological mother is a child. The central questions raised by the case are whether minor parents should make medical decisions on behalf of an infant, and if so, what are the limits to this decision-making authority? In particular, can they refuse treatment that might be considered best for the infant? We examine different ethical arguments to underpin parental decision-making authority; we argue that provided that minor parents are capable of fulfilling their parental duties, they should have a right to make medical decisions for their infant. We then examine the ethical limits to minor parents' decision-making authority for their children. We argue that the restricted authority that teenagers are granted to make medical decisions for themselves looks very similar to the restricted autonomy of all parents. That is, they are permitted to make choices, but not harmful choices. Like all parents, minor parents must not abuse or neglect their children and must also promote their welfare. They have a moral right to make medical decisions for their infants within the same 'zone of parental discretion' that applies to adult parents. We conclude that adult and minor parents should have comparable decision-making authority for their infants., Competing Interests: Competing interests: DW was supported for this work by a grant from the Wellcome trust WT106587/Z/14/Z., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

This theoretical paper argues for prioritarianism as an ethical underpinning for digital health in contexts of extreme disadvantage. In support of this claim, the paper develops three prioritarian principles for making ethical decisions for digital health programme design, grounded in the normative position that the greater the need (of the marginalised), the stronger the moral claim. The principles are positioned as an alternative view to the prevailing utilitarian approach to digital health, which the paper argues is not sufficient to address the needs of the worst off. As researchers of digital health, we must ensure that the most globally marginalised are not overlooked by overtly technocentric implementation practices. Consequently, the paper concludes by advocating for use of the three principles to support stronger critical reflection on the ethics involved in the design and implementation of digital health programmes., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

This Explanation and Elaboration (E&E) article expands on the 26 items in the Standards for UNiversal reporting of Decision Aid Evaluations guidelines. The E&E provides a rationale for each item and includes examples for how each item has been reported in published papers evaluating patient decision aids. The E&E focuses on items key to reporting studies evaluating patient decision aids and is intended to be illustrative rather than restrictive. Authors and reviewers may wish to use the E&E broadly to inform structuring of patient decision aid evaluation reports, or use it as a reference to obtain details about how to report individual checklist items. [ABSTRACT FROM AUTHOR]

In a companion paper, we proposed that cognitive debiasing is a skill essential in developing sound clinical reasoning to mitigate the incidence of diagnostic failure. We reviewed the origins of cognitive biases and some proposed mechanisms for how debiasing processes might work. In this paper, we first outline a general schema of how cognitive change occurs and the constraints that may apply. We review a variety of individual factors, many of them biases themselves, which may be impediments to change. We then examine the major strategies that have been developed in the social sciences and in medicine to achieve cognitive and affective debiasing, including the important concept of forcing functions. The abundance and rich variety of approaches that exist in the literature and in individual clinical domains illustrate the difficulties inherent in achieving cognitive change, and also the need for such interventions. Ongoing cognitive debiasing is arguably the most important feature of the critical thinker and the well-calibrated mind. We outline three groups of suggested interventions going forward: educational strategies, workplace strategies and forcing functions. We stress the importance of ambient and contextual influences on the quality of individual decision making and the need to address factors known to impair calibration of the decision maker. We also emphasise the importance of introducing these concepts and corollary development of training in critical thinking in the undergraduate level in medical education. [ABSTRACT FROM AUTHOR]

Should a person who feels his legal age does not correspond with his experienced age be allowed to change his legal age? In this paper, I argue that in some cases people should be allowed to change their legal age. Such cases would be when: (1) the person genuinely feels his age differs significantly from his chronological age and (2) the person's biological age is recognised to be significantly different from his chronological age and (3) age change would likely prevent, stop or reduce ageism, discrimination due to age, he would otherwise face. I also consider some objections against the view that people should be allowed to change their legal age and find them lacking., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

Emerging infectious diseases (EIDs) remain a significant and dynamic threat to the health of individuals and the well-being of communities across the globe. Over the last decade, in response to these threats, increasing scientific consensus has mobilised in support of a One Health (OH) approach so that OH is now widely regarded as the most effective way of addressing EID outbreaks and risks. Given the scientific focus on OH, there is growing interest in the philosophical and ethical dimensions of this approach, and a nascent OH literature is developing in the humanities. One of the key issues raised in this literature concerns ethical frameworks and whether OH merits the development of its very own ethical framework. In this paper, we argue that although the OH approach does not demand a new ethical framework (and that advocates of OH can coherently adhere to this approach while deploying existing ethical frameworks), an OH approach does furnish the theoretical resources to support a novel ethical framework, and there are benefits to developing one that may be lost in its absence. We begin by briefly explaining what an OH approach to the threats posed by EIDs entails before outlining two different ways of construing ethical frameworks. We then show that although on one account of ethical frameworks there is no need for OH to generate its own, there may be advantages for its advocates in doing so., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

Affectively uncomfortable concern, anxiety, indecisionand disputation over 'right' action are among the expressions of moral tension associated with ethical dilemmas. Moral tension is generated and experienced by people. While ethical principles, rules and situations must be worked through in any dilemma, each occurs against a backdrop of people who enact them and stand much to gain or lose depending on how they are applied and resolved. This paper attempts to develop a taxonomy of moral tension based on its intrapersonal and interpersonal sources and expressions. The proposed 'ethics of incongruity' (EoI) outlines ways in which values, actions and needs can find themselves mismatched in morally relevant ways between patients and their clinicians, their own psychologies and their societies. Patient-clinician incongruities may manifest as discord, value misalignment and deception. Patient-patient (ie, intrapersonal) incongruities may manifest as incapacity, akrasia and self-deception. Patient-society incongruities may manifest as disenfranchisement, disaffiliation and disregard. Brief explanations of the incongruities in this scheme are provided, as are suggestions on working within them. Using concepts from moral philosophy when applicable, these suggestions may either ease direct resolution of problems arising from the incongruities, or make sense of the moral tension that arises from the human context of the ethical dilemma at hand. This presentation of content and resolution methods for the EOI is no doubt incomplete. Hopefully, refinement of this preliminary proposal will follow, particularly from clinicians, as the ones who, along with their patients, experience medical ethics in directly tension-inducing ways., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual's rights over that body can support the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) discussions with patients and their caregivers have been subjected to intense ethical and legal debate in recent years. Legal cases and national guidelines have tried to clarify the best approach to DNACPR discussions; however, there is little evidence of how best to approach them from the patient, family or caregiver perspective. This paper describes published accounts of patient, family and caregiver experiences of discussions about advance cardiopulmonary resuscitation (CPR) decision making., Methods: An integrative review of the UK literature between 2000 and 2016 including qualitative and quantitative studies was conducted. Worldwide, 773 abstracts were identified, and 20 papers from the UK were included in the final analysis., Results: Patient, family and caregivers prefer discussions to be initiated by someone trusted, and wishes for family involvement vary depending on the context. Timing of discussions should be individualised, though discussions earlier in the illness are often preferable. Discussions held in the acute setting are suboptimal. CPR decisions should be part of a wider discussion about future care and adequate communication skills training is important., Conclusions: The findings of this review are at odds with the current statutory framework and potentially challenging for medical professionals who are working in a stretched health service, with pressure to discuss DNACPR decisions at the earliest opportunity. With increasing focus on person-centred care and realistic medicine, patient narratives must be considered by doctors and policy makers alike, to minimise harm., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background Amid the calls for 'more public health evidencé, we also need simple understandable methods of determining when more research really is needed. This paper describes a simple decision aid to help policymakers, researchers and other decision makers assess the potential 'information value' of a new public health randomised controlled trial. Methods The authors developed a flow chart to help make explicit (1) the user's information needs, (2) the intended use of the new information that the study will produce, (3) the added value of the evidence to be derived from the new study and (4) the levels of precision, bias and generalisability required by the user Results The flow chart is briefly illustrated, first in generic form and then in a worked example, showing how it may be used in deciding whether a new study should be commissioned to evaluate the health impact of allowing motorcycles to use bus lanes in London Conclusions In this paper, the authors have presented a flow chart for enacting an informal 'Value-of- Information'-like approach to deciding when a new public health evaluation is needed. The authors do not suggest that the flow chart approach is technically the equivalent of Value-of-Information methods. Nonetheless, it represents a valuable perspective and process to adopt, and this structured approach will be more revealing than an unstructured thought experiment as the basis for decisions about a new study. To aid in its development as an effective tool, we invite users from a variety of perspectives and contexts to review it, to use it in practice and to send us their comments. INSETS: What is already known on this subject;What this study adds. [ABSTRACT FROM AUTHOR]

The Israeli law of abortions (1977) legally authorises hospital committees to decide upon women's requests for selective abortion. One of the law's clauses determines that abortions can be approved in cases of an embryopathy. However, the law does not provide any clear definitions of those fetal 'physical or mental defects' in terms of severity and/or likelihood, which remain open to interpretation by the committee members. This paper aimed to determine which ethical methodologies are used by committee members and advisors as they face the dilemma of abortion approval due to mild to moderate possible embryopathy. Twenty interviews demonstrated that they use mainly a combination of deontology and a contextual -- relational model. Their ethical considerations are both contextual such as the family's/woman's relational network and are influenced by the ethical principles of autonomy and in cases of late abortions the value of life. The findings reveal a paradoxical picture: on the one hand, committee members hold liberal perceptions and in practice abortion requests are very seldom rejected. On the other hand, the Israeli abortion law and practice of abortion committees is still problematical from liberal and feminist rights perspectives. This paradox is discussed further by reflecting upon the relevant theory as well as the Israeli context. The paper concludes by suggesting that within the specific Israeli sociopolitical climate the requirement for committee approval of what should be a private decision might be necessary in order to placate religious or other opposition to abortion. [ABSTRACT FROM AUTHOR]

The value of conscience in healthcare ethics is widely debated. While some sources present it as an unquestionably positive attribute, others question both the veracity of its decisions and the effect of conscientious objection on patient access to health care. This paper argues that the right to object conscientiously should be broadened, subject to certain previsos, as there are many benefits to healthcare practice in the development of the consciences of practitioners. While effects such as the preservation of moral integrity are widely considered to benefit practitioners, this paper draws on the work of Hannah Arendt to offer several original arguments in defence of conscience that may more directly benefit patients, namely that a pang of conscience may be useful in rapidly unfolding situations in which there is no time to reflect satisfactorily upon activities and that, given the hierarchical nature of healthcare institutions, a right to defy authority on the basis of conscience may benefit junior staff who lack the institutional power to challenge the orders of superiors. [ABSTRACT FROM AUTHOR]

This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as part of a patient-centred care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg's arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. No commercial re-use. See rights and permissions. Published by BMJ.)

In his excellent essay, 'Nudges in a post-truth world', Neil Levy argues that 'nudges to reason', or nudges which aim to make us more receptive to evidence, are morally permissible. A strong argument against the moral permissibility of nudging is that nudges fail to respect the autonomy of the individuals affected by them. Levy argues that nudges to reason do respect individual autonomy, such that the standard autonomy objection fails against nudges to reason. In this paper, I argue that Levy fails to show that nudges to reason respect individual autonomy., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Theoretical and empirical research in bioethics frequently focuses on ethical dilemmas or problems. This paper draws on anthropological and phenomenological sources to develop an alternative framework for bioethical enquiry that allows examination of a broader range of how the moral is experienced in the everyday lives of individuals and groups. Our account of moral experience is subjective and hermeneutic. We define moral experience as "Encompassing a person's sense that values that he or she deem important are being realised or thwarted in everyday life. This includes a person's interpretations of a lived encounter, or a set of lived encounters, that fall on spectrums of right-wrong, good-bad or just-unjust". In our conceptualisation, moral experience is not limited to situations that are heavily freighted with ethically-troubling ramifications or are sources of debate and disagreement. Important aspects of moral experience are played out in mundane and everyday settings. Moral experience provides a research framework, the scope of which extends beyond the evaluation of ethical dilemmas, processes of moral justification and decision-making, and moral distress. This broad research focus is consistent with views expressed by commentators within and beyond bioethics who have called for deeper and more sustained attention in bioethics scholarship to a wider set of concerns, experiences and issues that better captures what is ethically at stake for individuals and communities. In this paper we present our conceptualisation of moral experience, articulate its epistemological and ontological foundations and discuss opportunities for empirical bioethics research using this framework. [ABSTRACT FROM AUTHOR]

This article systematically reviews the available literature to improve our understanding of the physiological basis for orthoses under the kinematic, shock attenuation and neuromotor control paradigms. The propositions made under these three paradigms have not been systematically reviewed collectively, and as such, there is no single-point synthesis of this clinically relevant body of evidence and somewhat disparate findings. Our comprehensive search strategy yielded 22 papers. Under each paradigm, the role of orthoses with different design features including combinations of posting, moulding and density was analysed. Where possible, data have been pooled to provide an increased level of confidence in findings. The main findings in the kinematic paradigm were that posted non-moulded orthoses systematically reduced peak rearfoot eversion (2.12° (95% CI 0.72 to 3.53)) and tibial internal rotation (1.33° (0.12 to 2.53)) in non-injured cohorts. In the shock attenuation paradigm, it was found that non-posted moulded and posted moulded orthoses produced large reductions in loading rate and vertical impact force when compared with a control and to a posted non-moulded orthosis. The neuromotor control paradigm seems to be the least conclusive in its outcome. Based on our review, this paper concludes with rudimentary guidelines for the prescription of orthosis, that sports medicine practitioners may use in their clinical decision-making process. The need for further research focusing on the role of injury, particularly in neuromotor control modification and long-term adaptation to orthoses, was highlighted. [ABSTRACT FROM AUTHOR]

Non-treatment decisions concerning demented patients are complex: in addition to issues concerning the health of patients, ethical and legal issues are involved. This paper describes a method for the development of a guideline that clarifies the steps to be taken in the decision making process whether to forgo curative treatment of pneumonia in psychogeriatric nursing home patients. The method of development consisted of seven steps. Step 1 was a literature study from which ethical, juridical and medical factors concerning the patient's health and prognosis were identified. In step 2, a questionnaire was sent to 26 nursing home physicians to determine the relative importance of these factors in clinical practice. In a meeting of nine experienced physicians (step 3), the factors identified in step 2 were confirmed by most of these professionals. To prevent the final guideline being too directive, a concept guideline that included ethical and legal aspects was designed in the form of a "checklist of considerations" (step 4). Experts in the fields of nursing home medicine, ethics and law reviewed and commented on the concept guideline (step 5). The accordingly adapted "checklist of considerations" was tested in a pilot study (step 6), after which all experts endorsed the checklist (step 7). The resulting "checklist of considerations" structures the decision making process according to three primary domains: medical aspects, patient's autonomy, and patient's best interest (see annex at end of paper). [ABSTRACT FROM AUTHOR]

The article provides an overview of the changes integrated in the journal "Thorax" from 1996-2002. Two professionals in the field of biology and epidemiology were appointed as editors. The editorial staff has decided to improve the impact factor of the journal and the turnaround time on decisions. Several papers have been published which took respiratory medicine forward in new directions.

This paper argues that Charlie Gard's parents should have been the decision-makers about their son's best interests and that determination of Charlie's best interests depended on a moral decision about which horn of a profound moral dilemma to choose. Charlie's parents chose one horn of that moral dilemma and the courts, like Charlie Gard's doctors, chose the other horn. Contrary to the first UK court's assertion, supported by all the higher courts that considered it, that its judgement was 'objective', this paper argues that the judgement was not and could not be 'objective' in the sense of objectively correct but was instead a value judgement based on the judge's choice of one horn of the moral dilemma. While that horn was morally justified so too was the horn chosen by the parents. The court could and should have avoided depriving the parents of their normal moral and legal right and responsibility to decide on their child's best interests. Instead, this paper argues that the court should have acknowledged the lawfulness of both horns of the moral dilemma and added to its judgement that Charlie Gard's doctors were not legally obliged to provide treatment that they believed to be against their patient's best interests the additional judgement that Charlie's parents could lawfully transfer his care to other doctors prepared to offer the infant a trial of the experimental treatment requested by his parents., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Much of the commentary in the wake of the Charlie Gard litigation was aimed at apparent shortcomings of the law. These include concerns about the perceived inability of the law to consider resourcing issues, the vagueness of the best interests test and the delays and costs of having disputes about potentially life-sustaining medical treatment resolved by the courts. These concerns are perennial ones that arise in response to difficult cases. Despite their persistence, we argue that many of these criticisms are unfounded. The first part of this paper sets out the basic legal framework that operates when parents seek potentially life-sustaining treatment that doctors believe is against a child's best interests, and describes the criticisms of that framework. The second part of the paper suggests an alternative approach that would give decision-making power to parents, and remove doctors' ability to unilaterally withhold or withdraw life-sustaining treatment that they regard is futile. This proposal is grounded in several values that we argue should guide these regulatory choices. We also contend that the best interests test is justifiable and since the courts show no sign of departing from it, the focus should be on how to better elucidate the underlying values driving decisions. We discuss the advantages of our proposed approach and how it would address some of the criticisms aimed at the law. Finally, we defend the current role that the judiciary plays, as an independent state-sanctioned process with a precedent-setting function., Competing Interests: Competing interests: LW is an associate editor of the Journal of Medical Ethics., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Law's processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts' decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts' apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services - and into generalist ethics support services - in order to gauge whether this is indeed a promising development., Competing Interests: Competing interests: The author is a trustee of the UK Clinical Ethics Network. The paper reports the views of the author., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Many families refuse to consent to donation from their deceased relatives or over-rule the consent given before death by the patient, but giving families more information about the potential recipients of organs could reduce refusal rates. In this paper, we analyse arguments for and against doing so, and conclude that this strategy should be attempted. While it would be impractical and possibly unethical to give details of actual potential recipients, generic, realistic information about the people who could benefit from organs should be provided to families before they make a decision about donation or attempt to over-rule it., Competing Interests: Competing interests: DG is Deputy National Lead for Organ Donation for NHS Blood and Transplant. DS is a member of the Ethics Committee of the British Transplantation Society. Their views do not represent those of these organisations., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)