Analysis

Advice on resolving disagreements with the families of critically ill children

Nuffield Council on Bioethics issues briefing on how nurses should manage cases where parents can come into conflict with decisions about life-sustaining treatment

Nuffield Council on Bioethics issues briefing on how nurses should manage cases where parents can come into conflict with decisions about life-sustaining treatment

charlie_gard
Protestors outside the Royal Court of Justice during hearings of the Charlie Gard case.
Picture: Alamy

There have always been disagreements between healthcare staff and the parents of acutely ill children, and high-profile cases such as those involving Charlie Gard, Alfie Evans and Isaiah Haastrup show how acute these disagreements can become.

The cases illustrate how a combination of modern medicine, heartbreaking decisions about care and the power of social media can create difficult, at times toxic, environments in which to manage care. And these are not the only cases that have led to disagreements, just the ones that were in the headlines.

It is estimated that about ten cases involving the care of children are referred each year to the High Court in England. 

RCN children and young people’s specialist care forum chair Doris Corkin says that decision-making in such cases can be a ‘minefield’ for staff, but that it remains a fundamental part of nursing.

‘You want to support and involve parents, and you can understand and respect their wishes, but your priority is the vulnerable child or young person and what is best for them,’ she says.

‘Parents may feel they know what is best, but as a clinician you may have a different view. When this happens, it is essential you work with healthcare colleagues and communicate skilfully to broach any issues at the right time.’

Poor communication

Doing this can be difficult and so the Nuffield Council on Bioethics has produced a briefing note on the most common pitfalls for healthcare staff and how to avoid them.

It states that disagreements are inevitable given the complexity and uncertainty of care for critically ill children, but that much can be done to stop disputes from escalating or becoming entrenched.

Ten

cases involving the treatment of children are estimated to be referred to High Court in England each year

The briefing cites poor communication, such as conflicting messages being given to families by different members of staff and the use of insensitive language, as a major cause of problems, as is delay in seeking resolution or mediation.

Nuffield Council on Bioethics member Ann Gallagher, who helped draw up the briefing, says: ‘Every situation is different, but we have tried to understand some of the causes of disagreements.’

She wants to see more done at a national level to promote good practice and encourage ‘good collaborative relationships between families and healthcare staff’.

This approach could include drawing up frameworks for conflict management.

Resolving disputes

The briefing states that the key to resolving disagreements is ensuring there are positive and holistic discussions between healthcare staff and parents.

These discussions can benefit from the involvement of others, such as hospital chaplains, religious leaders and the Patient Advice and Liaison Service, as well as palliative care specialists.

Second expert opinions should also be welcome, although care should be taken to ensure the people involved are viewed as independent by all parties.

In addition, some hospitals have access to clinical ethics committees, while mediation involving a neutral mediator is increasingly being recognised as an effective approach.

Similar suggestions have also been put forward in subsequent Royal College of Paediatrics and Child Health guidance for doctors.

The Nuffield briefing also states that when disputes occur, staff should receive psychological support and protection from abuse and intimidation. During the Charlie Gard case, staff at Great Ormond Street Hospital, London, reported being abused, while there were times when staff at King’s College Hospital, London, found it necessary to ban Isaiah Haastrup’s father from visiting.

Social media

London South Bank University senior children’s nursing lecturer Stephen McKeever says that, in recent years, social media has added a new dimension to communication.

Dr McKeever, who led a debate at the RCN congress in May on the topic, says: ‘We have seen members of staff attacked on social media, which has been used to raise the profile of these cases, creating global interest.’

£1.3m

was raised by Charlie Gard’s parents to fund his treatment abroad

He says one consequence of this is that the input of others is put forward – in the cases of Alfie Evans and Charlie Gard offers of care were made by medical teams from other countries – despite there being no evidence that what they suggest will work .

‘This can create difficult, polarised situations,’ Dr McKeever says. ‘The press can end up camped at the doors of hospital, which affects the morale of staff.

‘This is difficult for the NHS, given there is patient confidentiality to consider, but I would like to see them state their case a little more, as well as doing more to protect and support staff.

‘We risk people not wanting to work in this area if we have more of these difficult cases.’

View from the front line

Catherine Boal, staff nurse at Royal Belfast Hospital for Sick Children’s paediatric intensive care unit, says:

‘Due to the complexity of children’s presenting conditions and the critical nature of their illnesses, disagreements between healthcare professionals and the children’s families can occur. 

‘The difficulty involved in determining the course of a child’s treatment cannot be understated.

‘Open channels of communication should be established to enable exchange of information between healthcare professionals and families. The effectiveness of this communication is a determining factor in avoiding disputes and misunderstandings. 

‘Media coverage has sometimes portrayed nurses and doctors inaccurately, as if they lack compassion or empathy during these difficult times. My nursing and medical colleagues have demonstrated qualities of professionalism, sensitivity and compassion in their response to these distressing situations.

‘However difficult a situation becomes, the needs of the child should remain paramount. If disagreements occur, it is important to remain empathetic regarding the plight of all parties involved.’


Cases that hit the headlines

haastrup
The parents of Isaiah Haastrup, whose life support
was withdrawn in 2018. Picture: Alamy

  • Charlie Gard died in 2017, aged 11, months after a legal battle between his parents and Great Ormond Street Hospital, London. He had a rare genetic condition causing progressive brain damage and muscle weakness. His parents wanted to take him to the US for treatment and raised more than £1 million to do so. However, the hospital argued this would cause suffering and that Charlie’s brain damage was irreversible, and judges blocked the move
  • Alfie Evans died in 2018, just before he turned two. He had a rare genetic brain condition and his parents fought a legal battle against Alder Hey Children’s Hospital, Liverpool, over withdrawing treatment. At one point a Vatican-owned hospital offered Alfie treatment and his father met the Pope. The Supreme Court ruled Alder Hey could withdraw his treatment
  • Ashya King was due to undergo chemotherapy and radiotherapy for a brain tumour at Southampton General Hospital in 2014 when his parents fled with him to Spain. They thought his best option was proton beam therapy, which was unavailable in the UK at that time. A judge ruled that Ashya could receive the therapy in Prague
  • Isaiah Haastrup had had catastrophic brain injuries at birth, and was unable to move or breathe independently. King’s College Hospital, London, won a legal battle to withdraw life support from Isaiah, who died in 2018

Find out more

This article is for subscribers only

Jobs