Involving parents in paediatric clinical ethics committee deliberations: a current controversy.

In cases where the best interests of the child are disputed or finely balanced, Clinical Ethics Committees (CECs) can provide a valuable source of advice to clinicians and trusts on the pertinent ethical dimensions. Recent judicial cases have criticised the lack of formalised guidance and inconsistency in the involvement of parents in CEC deliberations. In Manchester University NHS FT v Verden [2022], Arbuthnot J set out important procedural guidance as to how parental involvement in CEC deliberations might be managed. She also confirmed substantive guidance on the role of parental views in determining the child's best interests. We agree that it is good practice to ensure that the patient voice is heard in ethics processes, but how that is achieved is controversial. Surely it is best that what matters most to a patient and their family, whether facts or values, is conveyed directly to those considering the moral issues involved, rather than via a prism of another party. The approach suggested in the Verden case has much in common with the process used by our CEC. In this article, we commend Arbuthnot J's approach, provide an example of its effective operation and consider what it might mean for ethics processes.

How should we decide how to treat the child: harm versus best interests in cases of disagreement.

Where parents seek treatment for their young child that healthcare professionals cannot agree to, the High Court can determine what is in the child's best interests. Some activists and academics seek change to impose threshold criteria that would bolster the decision-making rights of parents and reduce deference to clinicians and the courts. We defend the best interests standard against arguments that a higher threshold of 'significant harm' should apply. We do so from ethical, legal, and clinical perspectives. The matter is of significant moral and practical importance, especially in light of the divergence of academic opinion, the burgeoning number of cases coming before the courts and recent case law and statutory attempts to effect change. We begin by disputing ethical claims that a significant harm threshold is preferable to the best interests standard, and then we set out jurisprudential and practical arguments that demonstrate the imprudence of a significant harm threshold and defend the established yardstick of best interests.

Challenging misconceptions about clinical ethics support during COVID-19 and beyond: a legal update and future considerations.

The pace of change and, indeed, the sheer number of clinical ethics committees (not to be confused with research ethics committees) has accelerated during the COVID-19 pandemic. Committees were formed to support healthcare professionals and to operationalise, interpret and compensate for gaps in national and professional guidance. But as the role of clinical ethics support becomes more prominent and visible, it becomes ever more important to address gaps in the support structure and misconceptions as to role and remit. The recent case of Great Ormond Street Hospital for Children NHS Foundation Trust v MX, FX and X ([2020] EWHC 1958 (Fam), [21]-[23] and [58]) has highlighted the importance of patient/family representation at clinical ethics committee meetings. The court viewed these meetings as making decisions about such treatment. We argue that this misunderstands the role of ethics support, with treatment decisions remaining with the clinical team and those providing their consent. The considered review by clinical ethics committees of the moral issues surrounding complex treatment decisions is not a matter of determining a single ethical course of action. In this article, we consider current legal understandings of clinical ethics committees, explore current concepts of ethics support and suggest how they may evolve, considering the various mechanisms of the inclusion of patients and their representatives in ethics meetings which is not standard in the UK.

Clinical ethics support services during the COVID-19 pandemic in the UK: a cross-sectional survey.

BACKGROUND: The COVID-19 pandemic highlighted the need for clinical ethics support provision to ensure as far as possible fair decision making and to address healthcare workers' moral distress. PURPOSE: To describe the availability, characteristics and role of clinical ethics support services (CESSs) in the UK during the COVID-19 pandemic. METHOD: A descriptive cross-sectional online survey was developed by the research team. The survey included questions on CESSs characteristics (model, types of support, guidance development, membership, parent and patient involvement) and changes in response to the pandemic. Invitations to participate were widely circulated via National Health Service institutional emails and relevant clinical ethics groups known to the research team. RESULTS: Between October 2020 and June 2021, a total of 53 responses were received. In response to the pandemic, new CESSs were established, and existing provision changed. Most took the form of clinical ethics committees, groups and advisory boards, which varied in size and membership and the body of clinicians and patient populations they served. Some services provided moral distress support and educational provision for clinical staff. During the pandemic, services became more responsive to clinicians' requests for ethics support and advice. More than half of respondents developed local guidance and around three quarters formed links with regional or other local services. Patient and/or family members' involvement in ethics discussions is infrequent. CONCLUSIONS: The pandemic has resulted in an expansion in the number of CESSs. Though some may disband as the pandemic eases, the reliance on CESSs during the pandemic demonstrates the need for additional research to better understand the effectiveness of their various forms, connections, guidance, services and modes of working and for better support to enhance consistency, transparency, communication with patients and availability to clinical staff.

Making Decisions for Children-Accommodating Parental Choice in Best Interests Determinations: Barts Health NHS Trust v Raqeeb [2019] EWHC 2530 (Fam); Raqeeb and Barts Health NHS Trust [2019] EWHC 2531 (Admin).

Four-year-old Tafida Raqeeb suffered a sudden and catastrophic brain injury resulting from a rare condition. UK doctors would not agree to a transfer of Tafida to a hospital in Italy in circumstances that they considered to be contrary to her best interests. Her parents applied for judicial review of the hospital decision and the hospital Trust applied for a determination of Tafida's best interests. The cases were heard together. The High Court ruled that Tafida could be taken to Italy for treatment. Applying the best interests test, Mr Justice MacDonald found that Tafida was not in pain and ongoing treatment would not be a burden to her. Further treatment would comply with the religious beliefs of her parents. The case is specific to its facts, but MacDonald J's interpretation of the best interests test is likely to have implications. In particular, we explore the separation of medical and overall best interests; the recognition of the relevance of international laws and frameworks to best interests determinations; and reliance not on what Tafida could understand and express but on what she might in future have come to believe had she followed her parents' religious beliefs.

Why moral philosophers are not and should not be moral experts.

Professional philosophers are members of bioethical committees and regulatory bodies in areas of interest to bioethicists. This suggests they possess moral expertise even if they do not exercise it directly and without constraint. Moral expertise is defined, and four arguments given in support of scepticism about their possession of such expertise are considered and rejected: the existence of extreme disagreement between moral philosophers about moral matters; the lack of a means clearly to identify moral experts; that expertise cannot be claimed in that which lacks objectivity; and that ordinary people do not follow the advice of moral experts. I offer a better reason for scepticism grounded in the relation between moral philosophy and common-sense morality: namely that modern moral philosophy views even a developed moral theory as ultimately anchored in common-sense morality, that set of basic moral precepts which ordinary individuals have command of and use to regulate their own lives. Even if moral philosophers do nevertheless have a limited moral expertise, in that they alone can fully develop a set of moral judgments, I sketch reasons - grounded in the values of autonomy and of democracy - why moral philosophers should not wish non-philosophers to defer to their putative expertise.

Selling yourself: Titmuss's argument against a market in blood.

This article defends Richard Titmuss's argument, and Peter Singer's sympathetic support for it, against orthodox philosophical criticism. The article specifies the sense in which a market in blood is "dehumanising" as having to do with a loss of "imagined community" or social "integration," and not with a loss of valued or "deeper" liberty. It separates two "domino arguments"--the "contamination of meaning" argument and the "erosion of motivation" argument--which support, in different but interrelated ways, the claim that a market in blood is "imperialistic." Concentrating on the first domino argument the article considers the view that monetary and non-monetary meanings of the same good can co-exist given the robustness of certain kinds of relationship and joint undertakings within which gifts can figure. It argues that societal relationships are vulnerable or permeable to the effects of the market in a way that those constitutive of the personal sphere are not. General, more broadly political questions remain unanswered but the core of Titmuss's original and challenging argument remains and can be presented in a defensible form.