Comment

Doreen Crawford: Charlie Gard case shows recourse to the courts is rarely helpful

The agonising and ethically complex dispute between Charlie Gard’s parents and Great Ormond Street Hospital has attracted huge media attention. But tensions between medical teams and parents of sick children are relatively common, and often it is nurses at the bedside who try to build bridges.
Charlie Gard case

The agonising and ethically complex dispute between Charlie Gards parents and Great Ormond Street Hospital has attracted huge media attention. But tensions between medical teams and parents of very sick children are relatively common, and often it is nurses at the bedside who try to build bridges

Away from the media spotlight, nurses in neonatal and intensive care units across the UK continue to do their jobs. Difficult ethical cases in these units are more common than people might think. Advances in technology, supportive nutrition and pharmacology have meant that infants and children who would have died can now be supported to survive, sometimes with a questionable quality of life. This can cause some personal disquiet for the

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The agonising and ethically complex dispute between Charlie Gard’s parents and Great Ormond Street Hospital has attracted huge media attention. But tensions between medical teams and parents of very sick children are relatively common, and often it is nurses at the bedside who try to build bridges


Charlie Gard’s parents leave the High Court in London after a recent setback in their fight to take their son to the US for treatment. Picture: PA

Away from the media spotlight, nurses in neonatal and intensive care units across the UK continue to do their jobs. Difficult ethical cases in these units are more common than people might think. Advances in technology, supportive nutrition and pharmacology have meant that infants and children who would have died can now be supported to survive, sometimes with a questionable quality of life. This can cause some personal disquiet for the nurses caring for these children and their families. 

Nurses working in these units are not in an emotional vacuum; to give good care you must care, it is as simple as that. Nurses are the products of their parenting, education and experience and, like everyone else, have acquired norms and values that influence their perspectives. 

There are some things that make it easier to provide care in these difficult circumstances, and there are conditions that can make it harder. Having a good, supportive team and having decisions related to care made in a consistent manner are important. Having a sensitive manager and periodic debriefings is vital.

Continuity of care

Disagreement in the aims and objectives of care and changes in the priorities of care can bring uncertainty. Having a manager who is rarely seen and a shift pattern that leaves little time for a debrief can result in staff feeling isolated and unsupported.

Most units have a core of experienced staff who have met these sorts of situations before and they form the backbone of the team delegated to provide care. These role models help educate the more junior staff. A small team is good for the child and the family, because they need continuity of care. Families like the security a good relationship can provide, and the child can sense confident, considerate handling and recognise the voice of a familiar nurse.

‘Where there is media attention, extreme positions can be taken and personal agendas are played out’

The medical team may be less visible – it is the nurse who is at the bedside for the duration of the shift, and the nurse who can bring some normality into the parents’ lives. Often parents with children this sick can virtually live in the hospital and forget the outside world. Some parents refer to their experience as being trapped in a time warp or a living hell.

But the staff themselves are at risk too. Caring for the same sick child shift after shift can be emotionally draining and burnout is a real threat. Periods of intense intervention when a child has become unstable and requires extraordinary means of support can result in flashbacks and other symptoms of post-traumatic stress. 

Communication breakdown

Sometimes the journey the parents and child have taken to reach this point can affect the way the parents relate to staff. Tensions and disagreements can occur between the medical team and the parents. In some situations, the normal means of communication break down completely.

Nurses can help build bridges, but in rare cases the parties take recourse to the legal system. Sadly, this can become adversarial. Then the fate of the infant or child in their care is publicly decreed by the courts. This is seldom helpful and arguably never in the best interests of the child.

Where there is media attention, extreme positions can be taken and personal agendas are played out to the detriment of common sense. The danger is that the child can be lost in cold legal argument and the focus can drift away from what should have been an agreed plan of care.


 

 

 

Doreen Crawford is consultant editor of Nursing Children and Young People, and nurse adviser with consultancy Crawford McKenzie

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