Disagreements in the care of critically ill children

The care and treatment of babies and young 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.¹ Sometimes these disagreements become entrenched, and the courts are required to arbitrate and make a decision, a process that can protract the disagreement further. Recent high-profile court cases in the UK have highlighted the damaging effects that these kinds of disagreements can have on everyone involved.²

This briefing note summarises the possible causes of disagreements between parents and healthcare staff, focusing on decisions about the care of babies and young children who cannot express their own views.³ We discuss the changing social contexts in which these issues arise and make observations about action that might be taken to prevent or more quickly resolve disagreements in future.⁴

References

The full list of references can also be found in the PDF version.

1 There is limited evidence on the frequency and nature of these disagreements, and on how they arise. See, for example, Brierley J et al. (2013) Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? J Med Ethics 39: 573–577; Forbat L et al. (2016) Conflict in a paediatric hospital: a prospective mixed-method study Arch Dis Child 101: 23–27; Shaw C et al. (2016) Parental involvement in neonatal critical care decision-making Sociol Health Illn 38: 1217-1242.

2 Alder Hey Children’s NHS Foundation Trust v Thomas Evans & Ors [2018] EWHC 308 (Fam); Kings College Hospital NHS Foundation Trust v Takesha Thomas & Ors [2018] EWHC 127 (Fam); Great Ormond Street Hospital v Constance Yates & Ors [2017] EWHC 972 (Fam); Portsmouth City Council v Naghmeh King & Ors [2014] EWHC 2964 (Fam).

3 A fuller discussion of law and practice in relation to decision making regarding the care and treatment of children and their involvement in research, including the participation of older children in the decision making process, can be found in Nuffield Council on Bioethics (2015) Children and clinical research: ethical issues.

4 This briefing note was informed by discussions that took place at a workshop held by the Nuffield Council on Bioethics in November 2018 which involved people with a range of expertise, including healthcare staff and parents of critically ill children; and two literature reviews commissioned by the Council.