Literature review (brief) - disagreements in the care of critically ill children

Background

The care and treatment of children who are critically ill often involves complexity and uncertainty, and disagreements can arise between parents and healthcare staff about the best course of action. Sometimes these disagreements become entrenched, and the courts are required to arbitrate and make a decision, a process that can protract the disagreement further. High-profile court cases in the UK continue to highlight the damaging effects that these kinds of disagreements can have on everyone involved.

In 2018-19, the Council explored the factors that might be contributing to how disagreements of this kind develop, and how they are being resolved. We are embarking on a new project, commissioned by the Department of Health and Social Care (DHSC), that will build on existing work and draw on published evidence as well as the perspectives of people with lived and professional experience to further understand the causes of disagreements in the care of critically ill children. The project will inform national and regional learning and improvement and support the creation of good, collaborative relationships between parents and healthcare staff.

More information about the project is available here.

Literature review

A key part of the project involves the review and analysis of existing evidence further to that explored as part of our previous work. Accordingly, the Council seeks to commission a review of the literature to further our understanding of disagreements between families and clinicians/treating teams relating to the care of critically ill children.

The aims of the literature review are to identify and summarise research on:

1. The reasons why disagreements do and don’t occur between parents/carers and treating teams in the care of a critically ill child.
2. The impact these disagreements have on parents/carers, treating teams, the child and the wider healthcare system.
3. Mechanisms in use for avoiding, recognising, managing and resolving disagreements of these kinds – in the UK and in comparator countries.

The reviewer/s may wish to explore any of the following:

• The effect of any changes over time in parents/families’ attitudes and deference towards healthcare professional expertise and opinion.
• Ways in which patients and families interact with healthcare professionals during and following the COVID-19 pandemic.
• Behavioural psychology research on the impact of extreme stress on interpersonal relationships and how this manifests between healthcare professionals and parents/families.
• The effect of religion and faith on parents/families’ attitudes towards end-of-life care and preservation of life.
• Whether socio-economic factors influence levels of health literacy and the likelihood of disagreements arising.
• The impact of increased access to medical information and opinion outside of the traditional healthcare environment.
• The impact of ‘defensive medicine’ and healthcare professionals’ concerns about litigation or professional regulatory action.
• Systemic constraints within the NHS (such as on resources, training and communication) and associated impacts on relationships between parents/families and healthcare professionals.
• Whether there are particular points in the care pathway where disagreements are more likely to arise.
• The long-term effects of disagreements on all parties, particularly those where legal professionals and the courts have been involved.
• The effects of disagreements on and the impacts of patient and public trust in healthcare professionals and NHS institutions.
• Examples of good practice in shared decision making about the care of critically ill children.
• Potential barriers or challenges to good practice related to, for example, the provision of specialist services and dispute resolution measures, workforce capacity, capability and training, public information and education, and healthcare leadership. 
• Non-UK methods of resolving disagreements between parents/families and healthcare professionals, and their effectiveness.

Scope of the literature review

The review should not duplicate two literature reviews we commissioned in this area in 2018:

1. Disagreements in the care of critically ill children: emerging issues in a changing landscape

Dr Neera Bhatia, Senior Lecturer in Law, Deakin University, School of Law, Melbourne, Australia

This review explores some of the challenges that are emerging in a changing healthcare landscape when disagreements occur between parents and healthcare professionals in the care and treatment of critically ill children. The key challenges for future legal, social and policy development that emerged from the literature are: (1) the role and impact of social media/internet in treatment decisions, (2) innovative treatments, and (3) child medical tourism.

2. UK processes for resolution of disagreements about the care of critically ill children

Louise Austin, Centre for Ethics in Medicine and Centre for Health, Law and Society, University of Bristol

This review explores the effectiveness and appropriateness of UK processes for the resolution of disputes about the care of critically ill children. It focuses upon five mechanisms for resolution: discussions between families and clinicians; second-opinion experts; clinical ethics committees; mediation; and court proceedings.

Generally, the review should be limited to literature published in 2017 or later. However, searches of the literature on topics covered by our past reviews should focus on research published since September 2018.

The review should explore research and evidence on disagreements in neonatal and paediatric critical care. However, we also would be interested to learn from disagreements that occur in other specialties, such as adult palliative care and care of adults who lack capacity as a result of learning disability or acquired brain injury, and from resolution mechanisms used in other areas of family life, such as the Family Division of the High Court and the Family Drug and Alcohol Court.

We are primarily interested in research and evidence that relates to the UK healthcare context although, as stated above, international perspectives are welcomed if there are sufficient similarities to UK healthcare (for example, other systems of universal healthcare) if they provide a useful comparison to the UK.

The literature review should be limited to around 8000 words and include the following:

• A short (1 page) summary of the review at the start of the document.
• Analysis of the quality of evidence, and identification of any gaps in the literature.
• Identification of themes in the evidence (if any).

We are looking for a balanced and objective review of the evidence. The reviewer/s should not include any recommendations nor express any particular position or view on the issues identified.

The review will be published on the Nuffield Council on Bioethics’ website and so should be written accessibly for a broad audience (so far as possible). The published review will be appropriately credited to the author(s).

Fees and timescales

The completed review will carry a fee of £10,000, plus VAT if applicable, and must be delivered to the Council in its agreed final form no later than Friday 21 April 2023. The reviewer/s should provide progress updates and create opportunities for feedback from the Nuffield Council team at regular intervals.

Applications

Applications to carry out this work should be from individual researchers or small teams working collaboratively, with an existing interest in this area and an understanding of the Council’s (and others’) previous work relating to decision-making and disagreements in paediatric critical care.

Applications should contain the following as a minimum:

• A statement of suitability to undertake the work
• Declaration of any perceived or actual conflicts of interest
• A proposal setting out how work will be carried out in accordance with required timescales
• A CV
• A sample of recent, relevant work
• Two referees (professional and/or academic)

Applications, and questions about the brief in advance of application should be directed to Natalie Michaux, Project Manager, at children@nuffieldbioethics.org.

The deadline for applications is Friday 3 February 2023 at midday.