Countries throughout the world are counting the health and socioeconomic costs of the COVID-19 pandemic, including the strategies necessary to contain it. Profound consequences from social isolation are beginning to emerge, and there is an urgency about charting a path to recovery, albeit to a ‘new normal’ that mitigates them. Children have not suffered as much from the direct effects of COVID-19 infection as older adults. Still, there is mounting evidence that their health and welfare are being adversely affected. Closure (...) of schools has been a critical component of social isolation but has a far broader impact than the diminution of educational opportunities, as important as these are. Reopening of schools is therefore essential to recovery, with some countries already tentatively implementing it. Children’s interests are vital considerations in any recovery plan, but the question remains as to how to address them within the context of how society views children; should they be regarded as pawns, pathfinders or partners in this enterprise? (shrink)

OBJECTIVES: To investigate the need for hospital clinical ethics committees by studying the frequency with which ethical dilemmas arose, the perceived adequacy of the process of their resolution, and the teaching and training of staff in medical ethics. DESIGN: Interviews with individuals and three multidisciplinary teams; questionnaire to randomly selected individuals. SETTING: Two major London children's hospitals. RESULTS: Ethical dilemmas arose frequently but were resolved in a relatively unstructured fashion. Ethical concerns included: the validity of consent for investigations and treatment; (...) lack of children's involvement in consent; initiation of heroic or futile treatments; resource allocation. Staff expressed the need for a forum which would provide consultation on ethical issues, develop guidelines for good ethical practice, undertake teaching and training, and provide ethical reflection outside the acute clinical setting. CONCLUSION: Multidisciplinary, accountable and audited clinical ethics committees with predominantly advisory, practice development and educational roles could provide a valuable contribution to UK clinical practice and perhaps in other countries that have not developed hospital clinical ethics committees. (shrink)

The paucity of research data to guide current paediatric practice has led to children being termed therapeutic orphans. This difficulty is especially pertinent to research in emergency situations, such as acute resuscitation or critical care, where accepted ethical standards for overall research, have historically created practical difficulties for researchers. The welcome establishment of organisations to support UK paediatric research is helping to ensure safer and more effective medications for children, however as the balance between protection and access at the heart (...) of the paediatric research ethical debate shifts to ever increasing access for researchers to children, it remains crucial to ensure the protection for these vulnerable participants. The fundamental protection for research subjects, namely their full informed consent before any recruitment, is not tenable in true emergency situations and so other approaches are warranted if standards are to be improved by human subjects research in such areas. Proxy, deferred and retrospective consent have all been advocated as solutions to this difficulty and this paper explores the ethical justification for these approaches and their utility in safeguarding children and families in emergency situations when traditional informed consent, as currently defined, cannot be obtained in the necessary time frame to enable research. (shrink)

A balance needs to be struck between facilitating compassionate access to innovative treatments for those in desperate need, and the duty to protect such vulnerable individuals from the harms of untested/unlicensed treatments. We introduced a principle-based framework to evaluate such requests and describe its application in the context of recently evolved UK, US and European regulatory processes. 24 referrals were received by our quaternary children's hospital Clinical Ethics Committee over the 5-year period. The CEC-rapid response group evaluated individual cases within (...) 48-hours; the main referrers being haematology/oncology, immunology or transplant services. Most requests were for drug/vaccine/pre-trial access or biological/cellular therapies. The majority of individual requests were approved ; neutral or negative opinions were given in 5, including 3 group requests. Recently evolved regulatory processes share common criteria and conditions to our framework including: demonstration of clinical need; sound scientific basis with lack of viable alternative; risks-benefit/best interests evaluation; arrangements for fully informed consent; no compromise of arrangements to test treatment for licensing purposes; consideration of resource implications. There are differences between individual processes and with our framework, with respect to procedures, scope, application format, costs and obligation to make available all outcome data. Our experience has emphasized the need for an independent, principled, consistent, fair and transparent response to the increasing demand for innovative treatment on a compassionate basis. We believe that there is a need for harmonization of the recent proliferation of regulation and legislation in this area. (shrink)

The management of child protection concerns arouses strong emotions and controversies and creates ethical tensions for all concerned. This paper provides a rational analysis of some of the issues involved and suggests responses to them. The ethical and legal duties of health-care professionals are to act in the best interests of the child by safeguarding children and reporting concerns. But this may involve conflicts with parents and produce reluctance of professionals to become involved, especially in controversial types of abuse. Mandatory (...) reporting of concerns might overcome such reluctance, but may be ineffective in the face of diagnostic uncertainties. Assembly of a stronger diagnostic evidence base would seem ethically justified, but organization of the necessary case controlled studies might be problematic. Even with a comprehensive evidence base, individual diagnoses of abuse will always involve value judgements that should be underpinned by effective training and assessment of core competencies of professionals. These manoeuvres are unlikely to prevent both justified and vexatious complaints, often in relation to breaches in professional duties or concerning professional misconduct. The tendency to blame experts may have contributed to a reluctance of other professionals to become involved, despite proposals for reforms in the expert witness and court systems. Current approaches to child protection may neither promote greater understanding nor be in the best interests of children. A revised social contract for the effective protection of children could include: a duty of care that adequately addresses the primacy of the child's welfare; the acquisition of a sound evidence base; professional transparency and accountability (but with protection from malicious and vexatious complaints); and a shift emphasis towards a more inquisitorial system that embraced the principles of truth and reconciliation. (shrink)

We present the case of a six-year-old child with a fatal brainstem tumour, who was left in a ‘locked-in state’ post-decompressive biopsy. A discussion of the ethical dilemma this situation presents, together with the deliberations of the ethics service when consulted about the optimal course of action, follow. The issues raised highlight an important conflict between the parental view of what is in the child's best interests and what may appear, prima facie, to clinical staff, to be in that child's (...) best interests. We discuss how creative ethical thinking may facilitate resolution of seemingly insoluble situations. (shrink)

In the UK an increasing number of Clinical Ethics Committees (CECs) have been developed mainly in response to local need and interest. Their functions include education of health professionals, of policy and guideline development, and case review (both retrospective analysis of topics and advice on acute cases). The UK Clinical Ethics Network, a charitable foundation provides CEC s with help, support and advice and enables them to share their experience The legal status of UK CECs is unclear but some legal (...) commentators have suggested that CECs lack competencies and procedural rules necessary for acute case review. The UKCEN has proposed core competencies for CECs that lists the ethical, operational and procedural skills, knowledge and personal attributes required and how they may be acquired, assessed and maintained. Their implementation might lead to the development of ethical and legal governance which should benefit to future patient care. (shrink)

We outline a process, undertaken at a large tertiary children's hospital, intended to provide practical guidance and support for those involved in the management of children with life-limiting conditions. Initial discussions with representatives of clinical and support services identified communication problems and ethical dilemmas as key issues. These were further explored in multidisciplinary hospital meetings, culminating in a conference (Living Well, Dying Well) where individual perspectives - clinical, multi-faith, parental and legal - and cases were presented. Communication problems were found (...) to involve unrealistic expectations, failures of anticipation and difficulties in discussing sensitive issues, while ethical dilemmas arose from balancing burdens and benefits, clinical uncertainty, respecting autonomy and achieving equity and justice in delivery of care. An integrated service has been developed that is intended to provide clinical and spiritual care, psychosocial and ethical support, advice and mediation for children, families and staff, and to address the latter's educational and training needs. (shrink)