18 Sep 2023
The briefing note concludes that the Government and NHS leaders could do more to foster good, collaborative relationships between parents and healthcare staff across the UK.
The care and treatment of critically ill children often involves complexity and uncertainty. Disagreements can arise between parents and healthcare staff about the best course of action, and sometimes these become entrenched. Recent high-profile court cases in the UK have highlighted the damaging effects that these kinds of disagreements can have on everyone involved.
The reasons why disagreements develop are wide ranging, but include poor communication - such as conflicting messages being given to families by different members of staff, or the use of insensitive language - and delays in seeking resolution interventions, such as mediation.
The Nuffield Council has highlighted areas of action for healthcare policy-makers and NHS leaders that could help to prevent prolonged and damaging disagreements developing in future, or to resolve them more quickly.
Overall, the aim should be:
Professor Ann Gallagher, member of the Nuffield Council on Bioethics, and Professor of Ethics and Care at the University of Surrey says:
“Disagreements about the care and treatment of critically ill children can be extremely distressing for parents and for everybody involved, particularly if the case is referred to the courts. Every situation is different, but we have tried to understand some of the common causes of disagreements by talking to parents, healthcare staff and range of other people with expertise in this area.
“We heard that problems can start early, with poor communication leading to a breakdown of trust, or parents feeling they are excluded from medical conversations about their child. Healthcare staff can feel they are not adequately supported to deal with conflict.
“Although there is a lot of good practice already out there, we think more could be done at a national level to support good, collaborative relationships between families and healthcare staff leading to shared decision-making. We want to prompt policy makers and NHS leaders to think carefully about how the damaging and protracted disagreements that we have seen in recent years can be avoided in future.”
Areas of action
The Council suggests that, amongst other measures, those responsible for national policy making in relation to healthcare practice should consider:
Amongst other measures, those involved in leading NHS trusts and hospitals should consider:
Notes to editors
The Nuffield Council on Bioethics is an independent body that has been advising policy makers on ethical issues in bioscience and health since 1991. We are funded jointly by the Nuffield Foundation, Wellcome, and the Medical Research Council.
The NHS Long Term Plan, published in January 2019, includes commitments to increasing training and welfare for NHS staff. The summary document states: “We will continue to increase the NHS workforce, training and recruiting more professionals (…..) We will also make the NHS a better place to work, so more staff stay in the NHS and feel able to make better use of their skills and experience for patients.
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