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. (shrink)

Live broadcasts of surgical procedures are most common at professional conferences, but they are not uncommon in the wider public arena, with operations having recently been transmitted in realtime on public television in the UK. This phenomenon raises ethical concerns familiar from the professional context, along with some distinct considerations which merit further attention. In this article I aim to examine the issues in terms of patient autonomy, patient welfare and the public interest. Prompted by the interest recently expressed by (...) the Royal College of Surgeons of England, under each topic I pose a series of questions, before closing with a call for enhanced ethical oversight, such as might be afforded by a clinical ethics committee. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference (...) to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

The recent ruling from England on the case of M is one of very few worldwide to consider whether life-sustaining treatment, in the form of clinically assisted nutrition and hydration, should continue to be provided to a patient in a minimally conscious state. Formally concerned with the English law pertaining to precedent autonomy (specifically advance decision-making) and the best interests of the incapacitated patient, the judgment issued in M's case implicitly engages with three different accounts of the value of human (...) life, which respectively emphasise its self-determined, intrinsic and instrumental value. The judge appeared to be most persuaded by the intrinsic value of life and he concluded that treatment ought to continue. Assessing whether his approach or conclusion were ethically appropriate involves significant substantive and evidential questions regarding where the burden of proof should lie and what standard of proof should be required when decisions are to be made about the fates of patients inhabiting ‘twilight worlds’. (shrink)

Compromise on moral matters attracts ambivalent reactions, since it seems at once laudable and deplorable. When a hotly-contested phenomenon like assisted dying is debated, all-or-nothing positions tend to be advanced, with little thought given to the desirability of, or prospects for, compromise. In response to recent articles by Søren Holm and Alex Mullock, in this article I argue that principled compromise can be encouraged even in relation to this phenomenon, provided that certain conditions are present . In order to qualify (...) as appropriately principled, the ensuing negotiations require disputants to observe three constraints: they should be suitably reflective, reliable and respectful in their dealings with one another. The product that will result from such a process will also need to split the difference between the warring parties. In assisted dying, I argue that a reduced offence of ‘compassionate killing’ can achieve this. I acknowledge, however, that splitting the difference can induce splitting headaches, as there remain certain questions to be answered. Hopefully, however, sufficient work is done here to defend attempts to occupy the middle ground, whether these relate to assisted dying specifically or to other disputed moral matters. (shrink)

The organisation of health care is rapidly changing. There is a trend to move away from individual health care institutions towards transmural integrated care and interorganizational collaboration in networks. However, within such collaboration and network there is often likely to be a pluralism of values as different health care institutions often have very different values. For this paper, we examine three different models of how we believe institutions can come to collaborate in networks, and thus reap the potential benefits of (...) such collaboration, despite having different moral beliefs or values. A first way is the pragmatic way in which the different health care institutions avoid ethical reflection and focus on solutions. A second possible route is that of consensus where health care institutions base their collaboration on values that they all share. The third, and final, approach is that of compromise. Although moral compromise is often seen in a negative light, we argue that in many cases compromise might be necessary and ethically justified. In a final section, we will shift our focus from discussing various theoretical methods to allow collaboration to the potential content of consensus or compromise. (shrink)

BackgroundIn the ruling inY[2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration from patients with prolonged disorders of consciousness. The perceived requirement, which originated in a court ruling in 1993, encompassed those in the vegetative state and those in the minimally conscious state. The ruling inYconfirms that the court may still be approached to decide difficult or contested cases, but (...) there is otherwise no routine requirement that the judges be approached.Main bodyThere is much to welcome in this ruling, particularly as it means that these decisions for these patients are no longer (unusually) singled out for a judicial decision, with all the financial and emotional costs that court proceedings can entail. However, there is also a risk that the ruling might have unwelcome consequences. First, there is the possibility that patients might die too soon, particularly if doctors should now adopt the courts’ previous reasoning, which has suggested that patients in the vegetative state lack interests, so treatment may – perhaps must – be withdrawn. Secondly, there is the converse possibility that patients might live too long, since empirical research suggests that – whether intentionally or not – patients’ families, clinicians, and the health system appear to promote treatment-by-default.ConclusionRather than adopt general positions, which may be contestable and potentially risky, this article argues, on a pluralistic basis, that the individual patient should be the focus of any decision made in his or her ‘best interests’. The existing legal framework in England and Wales, which is provided by the Mental Capacity Act 2005, already points in this direction, although more efforts may be needed to ensure that those involved in making these decisions are suitably educated and supported. Fortunately, new guidance from the British Medical Association could help clinicians and families to make decisions in the future, which are appropriate for the incapacitated individual patient in question. (shrink)

Decisions about long-term ventilation in children can be clinically contentious and ethically challenging. In this article, the relevant legal, professional and moral principles inherent in such cases are explored. We commend the central importance of deliberation in the assessment of best interests, and propose a practical framework to assist the parent–clinical team to reach decisions in as transparent and equitable a manner as possible.