The briefing from the Nuffield Council on Bioethics – published today – suggested healthcare staff involved in disagreements should get better support including protection from intimidation and abuse.
“Problems can start early, with poor communication leading to a breakdown of trust”
It also highlighted the crucial role that children’s palliative care specialists – such as specialist nurses – can play in helping to make difficult decisions but said they were often brought in “too late”.
The document – Disagreements in the care of critically ill children – stressed the damaging impact that protracted disagreements about a child’s care can have on all concerned, as highlighted in recent high profile court battles.
For seriously ill children, a delay in decisions about their treatment and care may mean they undergo “many painful procedures” in intensive care, said the briefing, which urged government and NHS leaders to do more to foster good relationships between parents and professionals.
“For the parents and family of the child, there can be severe stress and anxiety, commentary and abuse from external parties and financial strain,” the briefing note added.
Meanwhile, healthcare staff can also experience “significant distress and anxiety and might be subject to abuse and intimidation”.
According to the document, about 10 cases per year regarding the medical care and treatment of children were referred to the High Court in England.
Recent examples include the case of toddler Alfie Evans from Merseyside, who suffered from a degenerative brain disorder and died last year after a court ruled life support should be withdrawn.
“Healthcare staff can feel they are not adequately supported to deal with conflict”
Other cases that have hit the headlines include those concerning the care and treatment of Charlie Gard, Isaiah Haastrup and Ashya King, whose parents removed him from hospital after disagreeing with staff over the best course of treatment for a brain tumour.
Ideally, parents and professionals should agree on the best course of action “through a process of shared decision making”, stated the briefing.
However, it went on to set out some key reasons why disagreements may arise, including poor communication, conflicting messages from different members of staff, use of insensitive language and delays in seeking mediation.
It highlighted the need for staff training in communication, ethics and conflict management, such as a successful scheme implemented at one London hospital.
“Participants were encouraged to empathise with patients and families by stepping into their shoes, and were taught skills to help them recognise and de-escalate conflicts,” said the briefing.
Of those paediatric staff who experienced conflict in the six months after undergoing the training, 91% said it had helped them de-escalate the situation.
This kind of training should be much more widely available to paediatric healthcare staff and should even be made compulsory, said the briefing.
Different perspectives, beliefs and values can lead to disputes about justifiable risks and what makes a life worth living, said the document, with differences of opinion not only occurring between staff and parents but also among staff and within families.
“Children’s palliative care specialists are often skilled communicators”
Nuffield Council on Bioethics report
Meanwhile, both parents and staff can experience “feelings of powerlessness”. Parents may feel excluded, often have little choice over where their child is cared for and are not entitled to legal aid if a case comes to court while hospitals have easy access to expert legal advice.
“Healthcare staff can feel they are not adequately supported by their employers to deal with conflict and possible abuse and that they are vulnerable to public complaints that can take a long time to resolve and be highly stressful,” said the document.
Because staff are often prevented from talking to the media, there is also concern that “the full range of perspectives is not always aired in public debates about the treatment of critically ill babies and young children”, it added.
When it came to resolving conflict, interventions such as mediation or a court judgment were often sought too late when a dispute has been going on for some time and became “entrenched”.
The briefing suggested children’s palliative care specialists could help avoid disputes if their expertise was deployed early on.
“Children’s palliative care specialists are often skilled communicators who take a holistic approach to supporting families of critically ill children but they are often brought in to discussions at too late a stage,” said the document.
“Participants were encouraged to empathise with patients and families by stepping into their shoes”
Nuffield Council on Bioethics report
Reasons for this could include misconceptions that specialists only offer care and treatment at the very end of life and the fact access to palliative care services across the country was “patchy”.
Ensuring timely referral to children’s palliative care services and providing parents with access to other support such as counselling were among key recommendations for trusts and hospitals.
Other steps could include providing parents with a “trusted and appropriately trained healthcare professional as a central point of communication”.
The document also highlighted the need to boost awareness of effective dispute resolution interventions in neonatal and paediatric intensive care units.
In addition, it said trusts and hospitals needed to ensure healthcare staff involved in disagreements were properly supported.
This could include developing conflict management frameworks, providing more psychological support and protecting them from abuse and intimidation.
Trusts and hospitals should also explore how healthcare professionals can be better supported to provide commentary to journalists “when disputes about the care of critically ill children not under their care reach the news”.
‘If the culture is unethical, acts of heroic staff may be futile’
Professor Ann Gallagher, member of the Nuffield Council on Bioethics, and professor of ethics and care at the University of Surrey, said every situation was different but the body had tried to understand some of the common causes of disagreements by talking to parents, staff and other experts.
“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,” she said.
While there was “a lot of good practice already out there”, she said more could be done at a national level to support collaborative relationships between families and staff, leading to shared decisions.
“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,” she added.