The ‘best interests’ of a child is a well-established legal principle in both domestic and international law. It is also a fundamental principle in healthcare with health professionals repeatedly told in their guidance that all their actions in relation to children must be in a child’s best interests.

At first sight this uncontroversial, it is difficult to think of any nurse, doctor or parent not wanting to do what is best for the child. But you don’t have to think for too long to realise things are not so straight forward. Best interests is a complex legal concept, but it applied by health professionals who are not lawyers. In some cases what is best for the child will be clear cut. For example, a straight forward procedure which will avoid the child future long term pain and suffering is not controversial. But the more complex best interest decisions become the more value laddened they become. The question then becomes whose values should take precedent, the child’s, the parents, the nurses, the doctors or someone else completely?

High profile disagreements between parents and health professionals have hit the headlines in recent years. Cases such as those of Charlie Gard (i) and Alfie Evans (ii). However, these cases are the ones at the extreme that reach the courts. Moreover, UK paediatrians in one study (iii) reported that disagreements between doctors as to the best interests of disabled children, were far more common than disagreements between parents and health professionals.

When serious disagreements as to a child’s best interests arise, these will often involve children the nurses team know well. Nurses may know the child better than the medical professionals involved, especially if the medical professionals are acute specialists called in during a crisis, rather than doctors who have been caring for the child long term.

This twitter talk will ask the following questions:

1) How can nurses help ensure decisions are made in each child’s best interests?

2) What barriers do nurses face in participating in best interest decisions and what solutions have you found helpful?

3) What are the important things to consider when making best interest decisions for children?

4) What is the role of the child?

5) What is the role of the parents?

6) How can nurses best support children and their families when end-of-life best interest decisions are being made?

7) What sources of support have you found helpful when end-of-life best interest decisions are being made?

Recommended reading before the twitter discussion

The Royal College of Paediatrics and Child Health’s March 2015 guidance provides a good overview of best interest decision-making, including a summary of the relevant law. This can be found at

https://adc.bmj.com/content/100/Suppl_2/s1?utm_source=trendmd&utm_medium=cpc&utm_campaign=adc&utm_content=consumer&utm_term=0-A

or here:

Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J, (2015) Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice, Archives of Disease in Childhood 2015;100: s1-s23

NICE also published guidance on End-of-Life Care for Infants, Children and Young People in December 2016, this is essential reading for health professionals and deals with the practicalities of the end-of-life decisions for children.

https://www.nice.org.uk/guidance/ng61

This talk will be hosted by Zoe Picton-Howell. Zoe is a solicitor who now teaches law, including healthcare law to law students at York University and health, ethics and society to medical students at Edinburgh University. Zoe’s PhD explored how UK paediatricians make end-of-life best interest decisions for disabled children and their understanding of the relevant law. Zoe was a member of the NICE End-of-Life Care for Infants, Children and Young People guideline drafting committee and a specialist member of the Quality Standards Committee for the same guideline. Zoe has served on many guideline, advisory, research and investigation committees relating to child health, particularly disabled child health. Zoe is however, perhaps best known as mum to Adam Bojelian aka AdsthePoet and as Adam’s mum frequently witnessed health professionals grabbling with best interest decisions.

i See https://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

ii See https://www.rcpch.ac.uk/news-events/news/rcpch-statement-alfie-evans-case

iii Picton-Howell, Z, (2018), UK Paediatricians’ medical decision-making for severely disabled children-A socio-legal analysis, PhD Thesis, University of Edinburgh