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Advance directives are critically important for capable individuals who wish to avoid the burdens of life-prolonging interventions in the advanced stages of dementia. However, this paper will argue that advance directives should have less application to questions about feeding patients during the clinical course of dementia than often has been presumed. The argument will be framed within the debate between Ronald Dworkin and Rebecca Dresser regarding the moral authority of precedent autonomy to determine an individual's future end-of-life care plan. We will use a brief analysis of the positions taken in two important papers that come out of the Dworkin/Dresser debate and a hypothetical patient, John, who will be followed from diagnosis of dementia to death, to show how advance directives should apply to key points in the progression of his disease, particularly in relation to food and nutrition., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. 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.)

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.)

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]

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.)

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]

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.)

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.)

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.)

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.)

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]

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]

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.)

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.)

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.)

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.)

Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients' confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Nudges-policy proposals informed by work in behavioural economics and psychology that are designed to lead to better decision-making or better behaviour-are controversial. Critics allege that they bypass our deliberative capacities, thereby undermining autonomy and responsible agency. In this paper, I identify a kind of nudge I call a nudge to reason, which make us more responsive to genuine evidence. I argue that at least some nudges to reason do not bypass our deliberative capacities. Instead, use of these nudges should be seen as appeals to mechanisms partially constitutive of these capacities, and therefore as benign (so far as autonomy and responsible agency are concerned). I sketch some concrete proposals for nudges to reason which are especially important given the apparent widespread resistance to evidence seen in recent political events., Competing Interests: Competing interests: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

In 1993, the UK High Court decided that Tony Bland was unaware of himself and his environment, had no interest in medical treatment and allowed withdrawal of treatment. Subsequently, the court has reviewed all cases of stopping feeding and hydration in people with a prolonged disorder of consciousness. Their focus has been on determining whether the person is in the permanent vegetative state, because this avoids considering what is in a person's Best Interests. Consequently, much resource is spent distinguishing the vegetative state from the minimally conscious state and often clinical decisions are delayed or not made because of the requirement to go to court. In this paper, I argue that the neurophysiological basis of consciousness is unknown, and one cannot test whether the necessary structures are functioning. Unconscious people have responsiveness which varies; they may even have brief behaviours suggestive of awareness. No single clinical sign or investigation nor assessment battery can prove the presence (or absence) of consciousness or its permanence. The diagnosis of consciousness is clinical. Furthermore, awareness varies across a spectrum. There is no separate vegetative state. People simply have very limited or absent awareness. Even if there were such a state, it cannot be identified. The ethical and legal issues associated with decisions on treatment of unconscious people are no different from similar decisions in other patients. All decisions should be taken within the Best Interests framework and process. There should be no requirement to take any particular decision to court in this patient group., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

In this paper, I explore under what circumstances it might be morally acceptable to transplant organs from a patient lacking capacity. I argue, with a developed hypothetical based around a mother and son, that (1) 'Best interests' should be interpreted broadly to include the interests that people have previously expressed in the well-being of others. It could, therefore, be in the 'best interests' of an unconscious patient to donate a non-vital organ to a family member. (2) Further expanding upon this case, and developing a variation on the 'trolley problems' I argue that where it is inevitable that an incapacitous patient is going to die-and specifically when it has been agreed through the courts that a patient in a permanent vegetative state is going to have clinically assisted nutrition and hydration withdrawn (with the inevitable consequence of death, and causing desiccation of the organs such that they are no longer able to be donated)-it could be in a patient's best interests to actively end their life with a drug that would stop the heart both to minimise potential suffering and in order to be able to have vital organs donated. I argue that in this case the strict adherence to the distinction between acts and omissions is not in the patient's best interests and should be reconsidered., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Currently, in England and Wales, Court of Protection's Practice Directive 9E (PD9E) requires all cases of proposed withdrawal or withholding of life-sustaining treatment in relation to adults in a permanent vegetative state (PVS) or minimally conscious state be referred to the Court. This paper looks at the origins of PD9E and contrasts the routine requirement to refer cases to court with the complex clinical terrain that comprises those suffering from prolonged disorders of consciousness. We look at the role of the court in decision making in these contexts and we ask what role the courts are called on to play in these decisions. We argue that PD9E, as currently drafted, is too imprecise to achieve its purpose. With our focus always on the best interests of patients, we argue that most decisions of this nature should be made according to a strict protocol but without the need for court approval. Court overview should be reserved for cases of disagreement between those involved in the decision that cannot be resolved by other methods, where there are serious doubts about the individual's best interests or where there are legally untested aspects to the decision., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Several distinct arguments conclude that terminally ill patients have a right to a medically assisted death; two are especially influential: the autonomy argument and the non-harm argument. Both have proven convincing to many, but not to those who view the duty not to kill as an (almost) absolute constraint. Some philosophers see the source of such a constraint in general (deontological) moral principles, other in the nature of the medical profession. My aim in this paper is not to add one further argument in favour of medically assisted death. Rather, I want to shed light on a kind of reason that, to my mind, has not been previously highlighted or defended, and that might shake the principled conviction that doctors are never allowed to actively assist their patients to die. Specifically, my purpose is to show that doctors (as members of the medical profession) have a special duty to provide medically assisted death to consenting terminally ill patients, because (and insofar as) they have been participants in the process leading to the situation in which a patient can reasonably ask to die. In some specific ways (to be explained), they are involved in the tragic fate of those patients and, therefore, are not morally allowed to straightforwardly refuse to assist them to die., Competing Interests: Competing interests: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Sterilisation requests made by young, child-free adults are frequently denied by doctors, despite sterilisation being legally available to individuals over the age of 18. A commonly given reason for denied requests is that the patient will later regret their decision. In this paper, I examine whether the possibility of future regret is a good reason for denying a sterilisation request. I argue that it is not and hence that decision-competent adults who have no desire to have children should have their requests approved. It is a condition of being recognised as autonomous that a person ought to be permitted to make decisions that they might later regret, provided that their decision is justified at the time that it is made. There is also evidence to suggest that sterilisation requests made by men are more likely to be approved than requests made by women, even when age and number of children are factored in. This may indicate that attitudes towards sterilisation are influenced by gender discourses that define women in terms of reproduction and mothering. If this is the case, then it is unjustified and should be addressed. There is no good reason to judge people's sterilisation requests differently in virtue of their gender., Competing Interests: Competing interests: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. 'Fertility preservation' for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional difference of opinion about whether it is ethical to offer such 'experimental' procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents' decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children's Hospital in Melbourne, Australia. [ABSTRACT FROM AUTHOR]

Background: Doctors sometimes encounter parents who object to prescribed treatment for their children, and request suboptimal substitutes be administered instead (suboptimal being defined as less effective and/or more expensive). Previous studies have focused on parental refusal of treatment and when this should be permitted, but the ethics of requests for suboptimal treatment has not been explored.Methods: The paper consists of two parts: an empirical analysis and an ethical analysis. We performed an online survey with a sample of the general public to assess respondents' thresholds for acceptable harm and expense resulting from parental choice, and the role that religion played in their judgement. We also identified and applied existing ethical frameworks to the case described in the survey to compare theoretical and empirical results.Results: Two hundred and forty-two Mechanical Turk workers took our survey and there were 178 valid responses (73.6%). Respondents' agreement to provide treatment decreased as the risk or cost of the requested substitute increased (p<0.001). More than 50% of participants were prepared to provide treatment that would involve a small absolute increased risk of death for the child (<5%) and a cost increase of US$<500, respectively. Religiously motivated requests were significantly more likely to be allowed (p<0.001). Existing ethical frameworks largely yielded ambiguous results for the case. There were clear inconsistencies between the theoretical and empirical results.Conclusion: Drawing on both survey results and ethical analysis, we propose a potential model and thresholds for deciding about the permissibility of suboptimal treatment requests. [ABSTRACT FROM AUTHOR]

Circumcision of a male child was recently ruled illegal by a court in Germany on the grounds that it violates the child's rights to bodily integrity and self-determination. This paper begins by challenging the applicability of these rights to the circumcision debate. It argues that, rather than a sweeping appeal to rights, a moral analysis of the practice of circumcision will require a careful examination of the interests of the child. I consider three of these interests in some detail. The first is the interest in avoiding a moderate decrease in expected future sexual pleasure. I argue that even if such a decrease were to occur, it is not wholly unreasonable to think that this might actually be a good thing for the child. Second, I consider the interest in self-determination. I argue that this interest is not as strong as it might appear because the adult's circumcision decision is subject to a variety of biases and a significant lack of information. Finally, I consider the child's interest in avoiding the future costs of adult circumcision. I argue that this interest becomes much stronger in the religious case because the child is quite likely to choose to become circumcised as an adult. The likelihood of the child choosing circumcision in the religious case also reduces the extent to which infant circumcision violates his interest in self-determination. I conclude that male infant circumcision falls within the prerogative of parental decision-making in the secular case and even more clearly so in the religious case. Finally, I distinguish male circumcision from female genital cutting in several important respects and argue that we can coherently hold that male circumcision is permissible without also endorsing all forms of female genital cutting. [ABSTRACT FROM AUTHOR]

Termination of pregnancy after a certain gestational age and following prenatal diagnosis, in many nations seem to be granted with a special status to the extent that they by law have to be discussed within a predominantly medical context and have physicians as third parties involved in the decision-making process ('indication-based' approach). The existing legal frameworks for indication-based approaches, however, do frequently fail to provide clear guidance for the involved physicians. Critics, therefore, asked for professional ethics and professional institutions in order to provide normative guidance for the physicians in termination of pregnancy on medical grounds. After outlining the clinical pathway in an indication-based approach and the involved types of (clinical) judgements, this paper draws upon different understandings of professional ethics in order to explore their potential to provide normative guidance in termination of pregnancy on medical grounds. The analysis reveals that professional ethics will not suffice -- neither as a set of established norms nor as internal morality -- in order to determine the normative framework of indication-based approaches on termination of pregnancy. In addition, there seem to be considerable inconsistencies regarding the target and outcome between prenatal testing on the one hand and following termination of pregnancy on the other hand. A source of morality external to medicine has to be the basis of evaluation if a consistent and workable normative framework for termination of pregnancy and prenatal testing should be established. [ABSTRACT FROM AUTHOR]

The requirements of the UK Equality Act 2010 and some high profile criticism for using a potentially ageist methodology have prompted the National Institute for Health and Clinical Excellence (NICE) to assess the processes and methodology it uses to make appraisal decisions. This paper argues that NICE has established rigorous systems to protect against ageist decisions, has no track record of ageism and is well placed to meet the requirements of new UK equality legislation. [ABSTRACT FROM AUTHOR]

From the perspective of investigators conducting research involving pregnant women and fetuses, a woman's decision about whether to have an abortion can sometimes be relevant to the suitability of the woman and fetus as research subjects. However, prominent ethicists disagree over whether it is permissible for a woman's decision about abortion to be an inclusion or exclusion criterion for participation in research. A widely held view is that fetuses to be aborted and fetuses to be carried to term should be treated equally as research subjects. Some hold that this principle implies that a woman's decision about whether to have an abortion should not be an inclusion or exclusion criterion. This paper identifies types of research in which investigators might want to have inclusion or exclusion criteria based on decisions about abortion. It examines the arguments for and against having the woman's decision about abortion included in such criteria. It is argued that there are types of research in which such criteria are ethically permissible. [ABSTRACT FROM AUTHOR]

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such directives. The author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don't, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, "reciprocity" is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making. [ABSTRACT FROM AUTHOR]

Two interpretations of the precautionary principle are considered. According to the normative (action-guiding) interpretation, the precautionary principle should be characterised in terms of what it urges doctors and other decision makers to do. According to the epistemic (belief-guiding) interpretation, the precautionary principle should be characterised in terms of what it urges us to believe. This paper recommends against the use of the precautionary principle as a decision rule in medical decision making, based on an impossibility theorem presented in Peterson (2005). However, the main point of the paper is an argument to the effect that decision theoretical problems associated with the precautionary principle can be overcome by paying greater attention to its epistemic dimension. Three epistemic principles inherent in a precautionary approach to medical risk analysis are characterised and defended. [ABSTRACT FROM AUTHOR]

Since its inception, bioethics' principled stance has been to argue against paternalism and elitism, and for an inclusive ethical perspective. But at least in North America, the growth of bioethics as a special area of applied ethics has created conflicts within the field itself. Those who, a generation earlier, argued against paternalism and for both professional and public accountability in medical decision making are now part of the decision making process. Too often, it is argued in this paper, their allegiance is to the employer, or to a view of medicine that is institutionally based. As a result, it is suggested by this review, medical ethicists have adopted the perspective that, in the early 1970s, they most criticised. The answer, it is argued here, is to revisit a lexicographical ordering of responsibility in bioethics, one that recognises professionals as individuals with responsibilities, as citizens with a public posture, and finally, as professionals involved in the process of medical decision making. [ABSTRACT FROM AUTHOR]

This paper discusses the role of consent in decision making generally and its role in end of life decisions in particular. It outlines a conception of autonomy which explains and justifies the role of consent in decision making and criticises some misapplications of the idea of consent, particular the role of fictitious or "proxy" consents. Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, then that decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable. Where, however, the human individual is not a person, as is the case with abortion, the death of infants like Mary (one of the conjoined twins in a case discussed in the paper), or in the very rare and extreme cases of those who have ceased to be persons like Tony Bland, such decisions are governed by the ethics of ending the lives of non-persons. [ABSTRACT FROM AUTHOR]

This paper compares and contrasts three different substantive (as opposed to procedural) principles of justice for making health care priority-setting or "rationing" decisions: need principles, maximising principles and egalitarian principles. The principles are compared by tracing out their implications for a hypothetical rationing decision involving four identified patients. This decision has been the subject of an empirical study of public opinion based on small-group discussions, which found that the public seem to support a pluralistic combination of all three kinds of rationing principle. In conclusion, it is suggested that there is room for further work by philosophers and others on the development of a coherent and pluralistic theory of health care rationing which accords with public opinions. [ABSTRACT FROM AUTHOR]

This paper advances a new moral epistemology and explores some of its normative and practical, especially bioethical, implications. In the first part, it shows that there is moral knowledge and that it is best understood in terms of knowing-how. Thus, moral knowledge cannot be analysed purely in the traditional terms of knowing-that. The fundamental idea is that one knows-how to act morally only if she is capable of following the right normative standards. In the second part, the paper discusses ways of integrating two expressions of moral knowing-how, namely caring and respecting into a coherent normative theory. It builds up the concept of respectful care as the central ingredient of such a normative theory. Finally, it illustrates how respectful care may transform some of our current clinical bioethical practices., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

A notorious debate in the ethics of healthcare rationing concerns whether to address rationing decisions with substantial principles or with a procedural approach. One major argument in favour of procedural approaches is that substantial principles are indeterminate so that we can reasonably disagree about how to apply them. To deal with indeterminacy, we need a just decision process. In this paper I argue that it is a mistake to abandon substantial principles just because they are indeterminate. It is true that reasonable substantial principles designed to deal with healthcare rationing can be expected to be indeterminate. Yet, the indeterminacy is only partial. In some situations we can fully determine what to do in light of the principles, in some situations we cannot. The conclusion to draw from this fact is not that we need to develop procedural approaches to healthcare rationing, but rather that we need a more complex theory in which both substantial principles and procedural approaches are needed., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Savulescu maintains that our paper, which encourages clinicians to honour requests for "inappropriate treatment" is prejudicial to his atheistic beliefs, and therefore wrong. In this paper we clarify and expand on our ideas, and respond to his assertion that medicine, ethics and atheism are objective, rational and true, while religion is irrational and false. [ABSTRACT FROM AUTHOR]