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)

Navigating conflict in healthcare settings can be challenging for all parties involved. Here, we analyse disputes about the provision of healthcare to patients, specifically exploring how mediation might be used to resolve disputes where healthcare professionals may disagree with the patient themselves or the patient's family about what healthcare is in the patient's best interests. Despite concerns about compromise over the patient's best interests, there is often room for the parties to come together and think about how the dispute might (...) be resolved in a way that is acceptable to all. It is in this space where mediation might step in. We set out the potential benefits and risks of mediation in this article, and argue that there is a need for clearer, empirically grounded evidence on the use of mediation in healthcare disputes. (shrink)

The pace of change and, indeed, the sheer number of clinical 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, [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. (shrink)

In most children’s hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians (...) about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children’s hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are ethics committee meetings, Nursing Ethics Forum, ethics Brown Bag workshops, PICU ethics rounds, Grand Rounds, NICU Comprehensive Care Rounds, Palliative Care Team case conferences, multidisciplinary consults in Fetal Health Center, and ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of “core competencies” than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple “moral spaces” in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today. (shrink)

There are two main and several subsidiary difficulties with this paper.1The first main problem is that the authors, in calling for a revolution in the way that withdrawal of treatment cases are dealt with, fail to recognise that their desired revolutionary utopia is the ordinary workaday world of the law courts.The English law in relation to the administration of treatment to children, and the withdrawal of treatment from them, is straightforward: the only lawful treatment is that which is in the (...) child's best interests. The Children Act 1989 ) puts it slightly differently, but synonymously: the welfare of the child is the paramount consideration. Yes, the views of those holding parental responsibility are sought, but those views do not determine where the child's best interests lie. This is often misunderstood. One hears people talk about a parental veto on proposed treatment or a withdrawal of treatment. There is no such veto. There is a de facto presumption that a parent's views on what is in their child's best interests will coincide with what those best interests are, but that presumption is rebuttable, and is very commonly rebutted, for instance, as the authors note, in many Jehovah's Witness cases. …. (shrink)

The determination of death by neurological criteria remains controversial scientifically, culturally, and legally, worldwide. In the United Kingdom, although the determination of death by neurological criteria is not legally codified, the Code of Practice of the Academy of Medical Royal Colleges is customarily used for neurological death determination and treatment withdrawal. Unlike some states in the US, however, there are no provisions under the law requiring accommodation of and respect for residents' religious rights and commitments when secular conceptions of death (...) based on medical codes and practices conflict with a traditional concept well-grounded in religious and cultural values and practices. In this article, we analyse the medical, ethical, and legal issues that were generated by the recent judgement of the High Court of England and Wales in Re: A [2015] EWHC 443. Mechanical ventilation was withdrawn in this case despite parental religious objection to a determination of death based on the code of practice. We outline contemporary evidence that has refuted the reliability of tests of brainstem function to ascertain the two conjunctive clinical criteria for the determination of death that are stipulated in the code of practice: irreversible loss of capacity for consciousness and somatic integration of bodily biological functions. We argue that: the tests of brainstem function were not properly undertaken in this case; the two conjunctive clinical criteria set forth in the code of practice cannot be reliably confirmed by these tests in any event; and absent authentication of the clinical criteria of death, the code of practice wrongly invokes a secular definition of death based on the loss of personhood. Consequently, the moral obligation of a pluralistic society to honor and respect diverse religious convictions to the greatest extent possible is being violated. Re A is contrasted with the US case of Jahi McMath in which the court accommodated parental religious objection to the determination of neurological death codified in the Uniform Determination of Death Act. We conclude that the legal system in the United Kingdom should not favour a secular definition of death over a definition of death that is respectful of religious values about the inviolability and sanctity of life. We recommend the legal recognition of religious accommodation in death determination to facilitate cultural sensitivity and compassionate care to patients and families in a pluralistic society. (shrink)

Conflict is an important consideration in the intensive care unit. In this setting, conflict most commonly occurs over the ‘best interests’ of the incapacitated adult patient; for instance, when families seek aggressive life-sustaining treatments, which are thought by the medical team to be potentially inappropriate. Indeed, indecision on futility of treatment and the initiation of end-of-life discussions are recognised to be among the greatest challenges of working in the ICU, leading to emotional and psychological ‘burnout’in ICU teams. When these disagreements (...) occur, they may be within the clinical team or among those close to the patient, or between the clinical team and those close to the patient. It is, therefore, crucial to have a theoretical understanding of decision-making itself, as unpicking misalignments in the family’s and clinical team’s decision-making processes may offer strategies to resolve conflict. Here, we relate Kahneman and Tversky’s work on cognitive biases and behavioural economics to the ICU environment, arguing that these biases could partly explain disparities in the decision-making processes for the two conflicting parties. We suggest that through the establishment of common ground, challenging of cognitive biases and formulation of mutually agreeable solutions, mediation may offer a pragmatic and cost-effective solution to conflict resolution. The litigation process is intrinsically adversarial and strains the doctor–patient–relative relationship. Thus an alternative external party should be considered, however mediation is not frequently used and more research is needed into its effectiveness in resolving conflicts in the ICU. (shrink)

With disagreement, doubts, or ambiguous grounds in end–of-life decisions, doctors are advised to involve a clinical ethics committee. However, little has been published on doctors’ experiences with discussing an end-of-life decision in a CEC. As part of the quality assurance of this work, we wanted to find out if clinicians have benefited from discussing end-of-life decisions in CECs and why. We will disseminate some Norwegian doctors’ experiences when discussing end-of-life decisions in CECs, based on semi-structured interviews with fifteen Norwegian physicians (...) who had brought an end-of-life decision case to a CEC. Almost half of the cases involved conflicts with the patients’ relatives. In a majority of the cases, there was uncertainty about what would be the ethically preferable solution. Reasons for referring the case to the CEC were to get broader illumination of the case, to get perspective from people outside the team, to get advice, or to get moral backing on a decision already made. A great majority of the clinicians reported an overall positive experience with the CECs’ discussions. In cases where there was conflict, the clinicians reported less satisfaction with the CECs’ discussions. The study shows that most doctors who have used a CEC in an end-of-life decision find it useful to have ethical and/or legal aspects illuminated, and to have the dilemma scrutinized from a new perspective. A systematic discussion seems to be significant to the clinicians. (shrink)

Brierley et al argue that in cases where it is medically futile to continue providing life-sustaining therapies to children in intensive care, medical professionals should be allowed to withdraw such therapies, even when the parents of these children believe that there is a chance of a miracle cure taking place. In reasoning this way, Brierley et al appear to implicitly assume that miracle cures will never take place, but they do not justify this assumption and it would be very difficult (...) for them to do so. Instead of seeking to override the wishes of parents, who are waiting for a miracle, it is suggested that a better response may be to seek to engage devout parents on their own terms, and encourage them to think about whether or not continuing life-sustaining therapies will make it more likely that a miracle cure will occur. (shrink)

Moral pluralism poses a foundational problem for secular clinical ethics: How can ethical dilemmas be resolved in a context where there is disagreement not only on particular cases, but further, on...

The frequency of conflicts with patients' families is one of the main contributors to the amount of emotional demands that healthcare professionals must tackle to prevent the occurrence of burnout symptoms. On the other hand, research evidence suggests that hardiness could enable healthcare professionals to handle their responsibilities and problems effectively. Based on the health impairment process of the Job Demands-Resources model, the main goal of this study was to delve deeper into the relationship between conflict with patients’ families, emotional (...) demands and exhaustion, as well as to test the buffering role of hardiness. Data were collected on a sample of N= 295 healthcare professionals working in a private hospital in Northern Italy. Most of them were women (78.6%) with a mean age of 40.62 years (SD = 9.50). The mediation of emotional demands within the association between conflict with families and emotional exhaustion and the moderating role of hardiness were tested using a bootstrapping approach. In the current sample, emotional demands mediated the association between conflict with families and exhaustion among healthcare professionals. Moreover, this relationship decreased among individuals with higher levels of hardiness. These findings contribute to the current understanding of the negative impact played by conflict with families on healthcare professionals' psychological wellbeing. Furthermore, they corroborated the role of hardiness as a personal resource that could prevent the occurrence of burnout symptoms. In addition to manage – and decrease – episodes of conflict with patients and their families, organizations in the healthcare sector should develop interventions aimed at fostering employees' hardiness and, consequently, tackle job demands ingrained in their profession (i.e., emotional demands). (shrink)

Brierley et al argue that in cases where it is medically futile to continue providing life-sustaining therapies to children in intensive care, medical professionals should be allowed to withdraw such therapies, even when the parents of these children believe that there is a chance of a miracle cure taking place. In reasoning this way, Brierley et al appear to implicitly assume that miracle cures will never take place, but they do not justify this assumption and it would be very difficult (...) for them to do so. Instead of seeking to override the wishes of parents, who are waiting for a miracle, it is suggested that a better response may be to seek to engage devout parents on their own terms, and encourage them to think about whether or not continuing life-sustaining therapies will make it more likely that a miracle cure will occur. (shrink)

In a number of countries, issues to do with religion seem increasingly to be of importance in school science lessons and some other science educational settings, such as museums. This chapter begins by discussing the nature of religion and the nature of science and then looks at understandings of possible relationships between science and Christianity with particular reference to such issues as determinism, evolution and the uses to which advances in scientific knowledge may be put. It then goes on to (...) examine whether the notion of worldviews is helpful to science educators working in this area. Finally, ways of teaching science so as to take account of Christian beliefs are considered. (shrink)

The determination of death by neurological criteria remains controversial scientifically, culturally, and legally, worldwide. In the United Kingdom, although the determination of death by neurological criteria is not legally codified, the Code of Practice of the Academy of Medical Royal Colleges is customarily used for neurological death determination and treatment withdrawal. Unlike some states in the US, however, there are no provisions under the law requiring accommodation of and respect for residents' religious rights and commitments when secular conceptions of death (...) based on medical codes and practices conflict with a traditional concept well-grounded in religious and cultural values and practices. In this article, we analyse the medical, ethical, and legal issues that were generated by the recent judgement of the High Court of England and Wales in Re: A [2015] EWHC 443. Mechanical ventilation was withdrawn in this case despite parental religious objection to a determination of death based on the code of practice. We outline contemporary evidence that has refuted the reliability of tests of brainstem function to ascertain the two conjunctive clinical criteria for the determination of death that are stipulated in the code of practice: irreversible loss of capacity for consciousness and somatic integration of bodily biological functions. We argue that: the tests of brainstem function were not properly undertaken in this case; the two conjunctive clinical criteria set forth in the code of practice cannot be reliably confirmed by these tests in any event; and absent authentication of the clinical criteria of death, the code of practice wrongly invokes a secular definition of death based on the loss of personhood. Consequently, the moral obligation of a pluralistic society to honor and respect diverse religious convictions to the greatest extent possible is being violated. Re A is contrasted with the US case of Jahi McMath in which the court accommodated parental religious objection to the determination of neurological death codified in the Uniform Determination of Death Act. We conclude that the legal system in the United Kingdom should not favour a secular definition of death over a definition of death that is respectful of religious values about the inviolability and sanctity of life. We recommend the legal recognition of religious accommodation in death determination to facilitate cultural sensitivity and compassionate care to patients and families in a pluralistic society. (shrink)

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. (shrink)

In a recent Journal of Medical Ethics article, ‘Should Religious Beliefs Be Allowed to Stonewall a Secular Approach to Withdrawing and Withholding Treatment in Children?’, Joe Brierley, Jim Linthicum and Andy Petros argue for rapid intervention in cases of futile life-sustaining treatment. In their experience, when discussions of futility are initiated with parents, parents often appeal to religion to ‘stonewall’ attempts to disconnect their children from life support. However, I will argue that the intervention that the authors propose is culturally (...) insensitive. (shrink)

Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying (...) state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements, it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated. (shrink)

Patient and family demands for the initiation or continuation of life-sustaining medically non-beneficial treatments continues to be a major issue. This is especially relevant in intensive care units, but is also a challenge in other settings, most notably with cardiopulmonary resuscitation. Differences of opinion between physicians and patients/families about what are appropriate interventions in specific clinical situations are often fraught with highly strained emotions, and perhaps none more so when the family bases their desires on religious belief. In this essay, (...) I discuss non-beneficial treatments in light of these sorts of disputes, when there is a clash between the nominally secular world of fact- and evidence-based medicine and the faith-based world of hope for a miraculous cure. I ask the question whether religious belief can justify providing treatment that has either no or a vanishly small chance of restoring meaningful function. I conclude that non-beneficial therapy by its very definition cannot be helpful, and indeed is often harmful, to patients and hence cannot be justified no matter what the source or kind of reasons used to support its use. Therefore, doctors may legitimately refuse to provide such treatments, so long as they do so for acceptable clinical reasons. They must also offer alternatives, including second opinions, as well the option of transferring the care of the patient to a more accommodating physician or institution. (shrink)

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both (...) explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. (shrink)