Disagreements in the care of critically ill children

Areas of action

In this section, we make observations about actions that could help to prevent protracted and damaging disagreements developing in future, or to resolve them more quickly. The aim should be: good communication between families and healthcare staff and an understanding of differing perspectives; appropriate involvement of parents in discussions and decisions about the care and treatment of their child; timely use of effective resolution interventions in cases of disagreement; and attention to the profound psychological effects that disagreements can have on families and healthcare staff.

Those responsible for national policy making in relation to healthcare practice should consider:

• supporting NHS trusts across the UK to: develop processes for recognising and managing disagreements between parents and healthcare staff, such as introducing conflict management frameworks and increasing timely access to effective resolution interventions; and gather data on the effectiveness of these processes;
• making ethics, communication, and conflict management training for paediatric healthcare staff more widely available, or even compulsory;
• improving access to and awareness of children’s palliative care services;
• making independent advocates and financial support, such as legal aid, available to parents who are in legal disputes with hospitals;
• producing clear, accessible information for parents and others on current law and guidance on making decisions about the care and treatment of children, including what shared decision making means in practice, and how decisions about accessing experimental treatments are made;
• facilitating open debate and research on how limited resources should be and are being taken into account in decisions about provision of life-sustaining treatment for critically ill children.

Those involved in leading NHS trusts and hospitals should consider:

• exploring ways in which those parents who want this can be more involved in discussions and decisions about their critically ill child, including having access to their child’s medical records and reliable research findings;
• providing parents with a trusted and appropriately trained healthcare professional as a central point of communication;
• ensuring timely referral to children’s palliative care services, and providing parents with access to other appropriate support, for example from hospital chaplains, counsellors and psychologists;
• improving access to and awareness of effective disagreement resolution interventions in neonatal and paediatric intensive care units;
• ensuring healthcare staff involved in disagreements are better supported by, for example, developing conflict management frameworks, providing more psychological support, and protecting them from abuse and intimidation;
• exploring how healthcare experts can be better supported to provide commentary to journalists when disputes about the care of critically ill children not under their care reach the news.

Research funding bodies and researchers should consider:

• carrying out research on current levels of access to and the effectiveness of different disagreement resolution mechanisms in hospitals, such as mediation, second expert opinions, and clinical ethics committees;
• exploring further the potential effects of any changes to the law and professional guidance on how decisions about the care and treatment of babies and young children are made, such as introducing a threshold of significant harm (see Box 2).

References

Some references are included within the text. For a full list of references, download the PDF.

* The High Court judgment in the case of Charlie Gard says: “However, it does seem to me that when Parliament changed the law in relation to legal aid and significantly restricted the availability of legal aid, yet continued to make legal aid available in care cases where the state is seeking orders against parents, it cannot have intended that parents in the position that these parents have been in should have no access to legal advice or representation.” Great Ormond Street Hospital v Constance Yates & Ors [2017] EWHC 1909 (Fam).