The Discourse of Dignity in the Charlie Gard, Alfie Evans and Isaiah Haastrup Cases.

There are competing accounts of dignity and no agreement about how to adjudicate between them, but this does not prevent dignity from playing an important role in the law. In fact, this very multiplicity enables dignity to perform a range of functions, both explicit and implicit, intended and unintended. Its 'open character' allows dignity to serve as a locus of agreement, but it can also silence debate and limit speaker control of how their statements are received and interpreted. This paper considers dignity's roles in recent English court judgments relating to withdrawal of ventilation and associated care from three unresponsive, paralysed infants: Charlie Gard, Alfie Evans, and Isaiah Haastrup. It presents a critical discourse analysis focusing on the judgments of first instance in relation to these infants. It argues that a range of conceptions of dignity are operationalised, serving four functions: to express esteem; to establish a hierarchy of credibility; to justify a best interests judgment, and to socialise that judgment. The overall effect is that dignity serves to compel acceptance of, rather than providing reasons to support, a best interests judgment. While recognising the value of unspecified invocations of dignity, we voice a warning about its potential to stifle debate and legitimise and enforce existing power relations.

Conceptions of dignity in the Charlie Gard, Alfie Evans and Isaiah Haastrup cases.

In 2017 and 2018, the English courts were asked to decide whether continued life-sustaining treatment was in the best interests of three infants: Charlie Gard, Alfie Evans and Isaiah Haastrup. Each infant had sustained catastrophic, irrecoverable brain damage. Dignity played an important role in the best interests assessments reached by the Family division of the High Court in each case. Multiple conceptions of dignity circulate, with potentially conflicting implications for infants such as Charlie, Alfie and Isaiah. The judgements do not explicate the conceptions of dignity upon which they rely. This article reconstructs the conceptions of dignity invoked in these judgements, finding that a broadly Kantian, agential conception dominates, under which human dignity requires the prospect of agency. This conception is situated within the broader body of thought on dignity, and the potentially adverse implications of applying the reconstructed conception in best interests assessments for infants with severely restricted consciousness are discussed.

An alternative approach to developing guidelines for the management of an anticipated extremely preterm infant.

Objectives To identify the probability of survival and severe neurodevelopmental impairment (sNDI) at which perinatal physicians would or would not offer or recommend resuscitation at birth for extremely preterm infants. Methods A Delphi process consisting of five rounds was implemented to seek consensus (>80% agreement) amongst British Columbia perinatal physicians. The first-round consisted of neonatal and maternal-fetal-medicine Focus Groups. Rounds two to five surveyed perinatal physicians, building upon previous rounds. Draft guidelines were developed and agreement sought. Results Based on 401 responses across all rounds, consensus was obtained that resuscitation should not be offered if survival probability <5%, not recommended if survival probability 5 to <10%, resuscitation recommended if survival without sNDI probability >70 to 90% and resuscitation standard care if survival without sNDI >90%. Conclusions This physician consensus-based, objective framework for the management of an anticipated extremely preterm infant is a transparent alternative to existing guidelines, minimizing gestational-ageism and allowing for individualized management utilizing up-to-date data. Further input from other key stakeholders will be required prior to guideline implementation.

Getting the Balance Right: Medical Futility, Scientific Advancement, and the Role of Law.

The concept of medical futility as an applied ethical framework has seen a rise and fall in its popularity over the last 30 years. It is a term used in relation to the assessment of a patient's health condition that is deemed untreatable, irreversible, and unresolvable. In four recent cases, Gard, Evans, Haastrup, and Raqeeb, the concept has been brought to the fore once again. These cases highlight a mounting tension between clinicians and families. Parental desires to see their child's treatment continued, while understandable, should not dominate treatment planning. This article analyses judicial interpretation of the factors which determine an assessment of futility and in doing so, argues that the role of medical futility in judicial decisions of this kind is gaining prominence and will continue to do so as scientific advancement blurs the limits of medicine even further.

An Analysis of Charlie's Law and Alfie's Law.

The Charlie Gard and Alfie Evans cases were high-profile cases involving disagreements between the parents of young infants and medical practitioners, which have given impetus to pre-existing calls for law reform that have been rebranded as 'Charlie's Law' and 'Alfie's Law'. I argue against the proposal to replace the best interest test, which is currently determinative in such contentious cases, with a significant harm test, as it would render UK law divergent from international law. I also employ critical theory to rebut the notion that parents are the best decision makers and refute criticisms of clinicians (who reflexively acknowledged the limits of medicine). I utilise theories of distributive justice to demonstrate that legal reform may exacerbate unfairness, and case law to show that it may be unworkable. Nonetheless, I apply critical and Foucauldian theory to critique the lack of patient and public empowerment within the NHS and I endorse the proposal to ensure that mediation is offered in contentious cases, as this may empower patients and their carers. I also aver that the best interests test should be informed by clearer criteria regarding the allocation of finite resources, which the public should influence via the democratisation of the NHS.

The Texas Medical Board and the Futility of Medical Exceptions to Abortion Bans.

This Viewpoint describes the failure of yet another state institution to generate meaningful guidance about medical exceptions to abortion bans.

Doctor's Criminal Liability and Medically Assisted Death - The Portuguese Case.

Recently, the Portuguese Parliament discussed four proposals aimed at allowing some forms of medically assisted death. However, all of them were rejected by the majority. Therefore, doctors who in some way accelerate a patient's death risk being convicted of the crime of homicide. Portuguese law provides some legal mechanisms that can exempt a doctor from criminal liability, such as causes excluding the conduct's wrongfulness, and causes excluding the doctor's culpability. Other elements to take into consideration are a proper interpretation of homicide crimes, thereby excluding conducts without the intent to kill; the relevance of patient consent; and the rejection of medical futility. This article explains how a doctor may not be held criminally accountable for medically assisted death, even in restrictive jurisdictions such as the Portuguese one.

Consultation before 'do not attempt resuscitation' orders.

Richard Griffith, Senior Lecturer in Health Law at Swansea University, set out the steps nurses must take to ensure that a DNACPR notice is lawful.

Voices of moral authority: parents, doctors and what will actually help.

The public often believes that parents have a right to make medical decisions about their child. The idea that, in respect of children, doctors should do what parents tell them to do is problematic on the face of it. The effect of such a claim would be that a doctor who acted deliberately to harm a child would be making a morally correct decision, providing only that it is what the child's parents said they wanted. That is so obviously nonsense that it cannot be what people who claim it actually mean. In this paper, I suggest that the claim actually represents either or both of two misunderstandings. It can be a result of wrongly appealing to the principle of respect for autonomy, or a belief that doctors are not committed to acting in the interests of the child. In this paper, I show that, while neither belief is entirely justified, there are elements of truth in both. I argue that if ethically correct decisions are those that are directed to improving the quality of a child's existence, then neither parents nor doctors are in a position to make ethically correct decisions about a child except in discussion with one another. Where such discussion is not possible, I suggest there should be a national Children's Interests Panel to agree on the child's interests. The panel should include, but not be limited to, paediatricians and lawyers and its decisions should be legally binding on all parties.

Charlie Gard: in defence of the law.

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.

Clinic, courtroom or (specialist) committee: in the best interests of the critically Ill child?

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.

Do not attempt resuscitation orders in primary care settings.

A Do Not Attempt Resuscitation notice (DNACPR) is an important mechanism for avoiding inappropriate CRP attempts, and protects district nurses and others from allegations of ill treatment or wilful neglect. The DNACPR notice must be discussed with the patient or their relatives, before placed on file ( Tracey v Cambridge Uni Hospital NHS Foundation Trust and others [2014] ; Winspear v City Hospitals Sunderland NHSFT [2015] ). In this article Richard Griffith set out the steps district nurses must take to ensure that a DNACPR notice is lawful.

"Futile Care"-An Emergency Medicine Approach: Ethical and Legal Considerations.

Futility often serves as a proposed reason for withholding or withdrawing medical treatment, even in the face of patient and family requests. Although there is substantial literature describing the meaning and use of futility, little of it is specific to emergency medicine. Furthermore, the literature does not provide a widely accepted definition of futility, and thus is difficult if not impossible to apply. Some argue that even a clear concept of futility would be inappropriate to use. This article will review the origins of and meanings suggested for futility, specific challenges such cases create in the emergency department (ED), and the relevant legal background. It will then propose an approach to cases of perceived futility that is applicable in the ED and does not rely on unilateral decisions to withhold treatment, but rather on avoiding and resolving the conflicts that lead to physicians' believing that patients are asking them to provide "futile" care.

Reasons behind providing futile medical treatments in Iran.

BACKGROUND: Despite their negative consequences, evidence shows that futile medical treatments are still being provided, particularly to terminally ill patients. Uncovering the reasons behind providing such treatments in different religious and sociocultural contexts can create a better understanding of medical futility and help manage it effectively. RESEARCH OBJECTIVES: This study was undertaken to explore Iranian nurses' and physicians' perceptions of the reasons behind providing futile medical treatments. RESEARCH DESIGN: This was a qualitative exploratory study. Study data were gathered through conducting in-depth semi-structured personal interviews and analyzed using the conventional content analysis method. Participants and research context: Twenty-one nurses and nine medical specialists were recruited purposively from four teaching hospitals affiliated to Tehran University of Medical Sciences. Ethical considerations: This study was approved by the Nursing and Midwifery Research Center and the Research Ethics Committee of Tehran University of Medical Sciences. All participants gave informed consent for the research and that their anonymity was preserved. FINDINGS: The main theme of the study was "having an obligation to provide medical treatments despite knowing their futility." This theme consisted of three main categories including patients' and family members' request for continuing life-sustaining treatments, healthcare professionals' personal motives, and organizational atmosphere and structure. DISCUSSION AND CONCLUSION: Different personal and organizational factors contribute to providing futile medical treatments. Promoting the structure and the function of hospital ethics committees, establishing and developing home care facilities, increasing the number of palliative care centers and hospices, and educating healthcare professionals, patients, and family members about the services and the benefits of such centers can facilitate making wise decisions about continuing or discontinuing treatments which have been labeled as futile.

The role of the courts in disagreements over the care of seriously ill babies.

Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.

Legal Briefing: Stopping Nonbeneficial Life-Sustaining Treatment without Consent.

In the United States, authoritative legal guidance remains sparse on whether or when clinicians may stop life-sustaining treatment without consent. Fortunately, several significant legislative and judicial developments over the past two years offer some clarity. We group these legal developments into the following seven categories: 1. Lawsuits for Damages 2. Amendments to the Texas Advance Directives Act 3. Constitutional Attack on TADA 4. Legislation Prohibiting Clinicians 5. Legislation Authorizing Clinicians 6. Cases from Canada 7. Cases from the United Kingdom.

Futility in Chronic Anorexia Nervosa: A Concept Whose Time Has Not Yet Come.

Comparatively little scholarly attention has been given to the question of futility in chronic psychiatric disorders, with the exception of a small body of work on so-called end-stage anorexia nervosa (AN). A review of this literature provides the background for a critical examination of whether the concept of futility has any clinically meaningful, ethically justifiable, and legally defensible application to AN. In this article, the arguments for and against futility judgments in AN are analyzed with special emphasis on determinations of capacity in this serious mental illness. Parallels between the futility disputes in medical and psychiatric disorders, where applicable, will be drawn to further illuminate whether or not the concept that continued psychiatric treatment for AN is ever truly futile.

The Texas Advanced Directive Law: Unfinished Business.

The Texas Advance Directive Act allows physicians and hospitals to overrule patient or family requests for futile care. Purposefully not defining futility, the law leaves its determination in specific cases to an institutional process. While the law has received several criticisms, it does seem to work constructively in the cases that come to the review process. We introduce a new criticism: While the law has been justified by an appeal to professional values such as avoiding harm to patients, avoiding the provision of unseemly care, and good stewardship of medical resources, it is applied incompletely. It allows physicians and institutional committees to refuse "futile" treatments desired by patients and families while at the same time providing no way of regulating physicians who recommend or even push "futile" treatments in similar cases. In this sense, the TADA is incomplete on its own terms.

Withholding and withdrawing life-sustaining treatment in a patient's best interests: Australian judicial deliberations.

Intractable disputes about withholding and withdrawing life-sustaining treatment from adults who lack capacity are rare but challenging. Judicial resolution may be needed in some of these cases. A central concept for judicial (and clinical) decision making in this area is a patient's "best interests". Yet what this term means is contested. There is an emerging Supreme Court jurisprudence that sheds light on when life-sustaining treatment will, or will not, be judged to be in a patient's best interests. Treatment that is either futile or overly burdensome is not in a patient's best interests. Although courts will consider patient and family wishes, they have generally deferred to the views of medical practitioners about treatment decisions.