Comment

The dilemma of continuing treatment for children who cannot benefit from it

Children's nurses need to develop resilience to deal with difficult ethical issues

Children's nurses need to develop resilience to deal with difficult ethical issues

Lanre and Isaiah Haastrup
Lanre Haastrup and his son Isaiah, for whom life support was discontinued. Picture: Facebook

The deeply troubling cases of Charlie Gard, Isaiah Haastrup and Alfie Evans have made international news, and have highlighted the ethics of continuing life-sustaining treatment for children who may not benefit or may even be harmed.

In each case, after conflict between parents and professionals, and against parental wishes, the courts upheld recommendations to stop treatment. The cases had progressed through every level of the legal system, and much has been written in the mainstream media and medico-legal literature.

But what about the nurses caring for children like Charlie, Isaiah and Alfie?

Children’s nursing is about the child in the centre of a family unit. Nurses are the most consistent presence in a family’s day-to-day life in hospital and therefore are in a natural position of trust. In times of conflict, as with these cases, this close relationship is at risk.

Nurses must deliver care and support in partnership with families they may know well, while being part of a team proposing a course of action that could result in the child’s death.

Empathy

In such cases, nurses’ fondness and empathy for a child and family may be at odds with their professional knowledge and experience, which tells them the withdrawal of treatment – but not care – is the ethically right thing for the child.

Many children’s nurses have experienced relationships with children or families becoming challenging or tense, perhaps because of a disagreement.

They may have been in the difficult position where a breakdown in trust leads parents to think the system is against them. A ‘them and us’ mindset can develop, in which nurses do not always represent ‘them’ but can become family allies.

Professional boundaries and the ability to advocate for a voiceless child can be severely tested if nurses are unwittingly drawn onto one side in such situations. They must be aware of the potential for unconscious emotional manipulation.

However, when critical legal and ethical discussion is needed, nurses are in a unique position to gain and share insight into a child’s everyday life, needs, responses and experiences. Their input must be highly valued.

Opportunity

An unprecedented level of worldwide coverage accompanied the cases of Charlie Gard and Alfie Evans. The parents of both boys understandably used social media to seek support.

This could have been an opportunity for better public understanding of the nursing role, but instead it led to intimidation of staff at Alder Hey Hospital, which was rightly and widely condemned.

Nurses across the country would not have envied their colleagues in London and Liverpool, who had no right to reply to the extreme and offensive views of many who knew few of the facts.

Nurses need encouragement to be able to nurture those in their care. They also need support to build the resilience they need to manage conflicts, which can arise during even the highest standards of care delivery.

Professional, legal and ethical knowledge are also critical in this area, where the complexities for children are unique.

As further high profile, emotive withdrawal cases become known, nurses must sometimes fear the next child to make the news will be one in their care.

The children’s nursing voice needs to be louder to ensure better public understanding and support, not only for the vulnerable children and families nurses care for, but also for the nurses themselves.


About the author

Alison_TaylorAlison Taylor is a senior lecturer in child health nursing at the University of Brighton, Falmer, Brighton

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