New guidance issued to clinicians on the management of parental conflict in the treatment of children with life threatening conditions

In recent years there has been a spate of high-profile cases (Ashya King, Charlie Gard, Alfie Evans) where conflict has arisen between treating clinicians and families over the withholding or withdrawal of life-sustaining treatment from child patients. Entrenched disagreements have resulted in protracted court proceedings to determine the child’s best interests.  Such cases have been accompanied by intense media coverage, emotionally charged social media campaigns, and angry protests outside children’s hospitals.  All of this inevitably has a profound impact on the child, their family, hospital staff as well as other patients and their families.

The Royal College of Paediatrics and Child Health (RCPCH) has published new guidance for paediatricians on ‘achieving consensus’ with families when conflict arises – click here. The guidance is based on evidence taken from clinicians, parents, parent advocates, ethicists and mediators. The RCPCH recognises that end-of-life decision-making and communication failure are common areas of dispute. Conflict is also prevalent on children’s inpatient wards where communication breakdown, disagreements over treatment and unrealistic parental expectations are the most common causes.

The RCPCH have identified several factors which can give rise to conflict: –

• Parents receiving conflicting information from health professionals
• The increasing availability of advanced forms of life-sustaining treatment
• The large amount of information online about innovative but unproven treatments for serious illnesses

Although the guidance is primarily aimed at cases involving withdrawal of life-sustaining treatment, it clearly has relevance to many other clinical scenarios. The aim of the guidance is to provide practical suggestions to support paediatric healthcare professionals to identify, prevent and manage potential conflict situations at the earliest opportunity.

Early Identification

The guidance emphasises the importance of hospitals having a robust strategy for the early identification of developing conflict. Early indicators are as follows: –

• Avoidance behaviour – parents avoiding certain medical professionals of medical professionals avoiding the family
• Demanding/controlling behaviour – parents questioning expertise, allowing only specific professionals to care for their child, or feeling the need to record conversations.
• Micromanagement – by parents of every aspect of their child’s care

Preventative Management

• Avoid giving families unrealistic expectations of clinical outcome. Honest and open communication from the outset is imperative.
• Ensure that different clinical staff are not giving conflicting information to parents – all members of the treating team should be kept informed of and understand the rationale for any changes to treatment plans
• Involve palliative care teams at an early stage when treatment options are being discussed (not just for end-of-life care)
• Be sensitive to the fact that parents under severe stress may act in difficult or unusual ways. Offer early psychosocial support especially to parents of children with complex needs or conditions which are life changing or life limiting
• Ensure support is also available for staff at the bedside who may be caught up in the conflict
• In children with complex or life-changing conditions, particularly cases involving prolonged admissions, assign a Lead Clinician role who can take responsibility for the child’s overall care, act as liaison between family and medical/nursing team, and coordinate a clear consistent message to the family by all health professionals thus avoiding potential areas of confusion.

Early Management

In a relatively small number of cases, disagreement over treatment decisions may lead to escalating conflict. In such cases advice and guidance should be provided to families which may include: –

• Signposting to services such as Patient Advice and Liaison Service (PALS) which can provide advice and support
• Involving palliative care to provide advice and support
• Provide advice on how families can access senior members of the service
• Provide information on how the ethical decisions are made by the hospital
• Offer families access to available mediation services

Where conflict remains, clinicians need to know how, when and where to access expert legal advice.

Escalation of conflict

• Consider offering a second opinion (from internal or external colleagues). There is no legal requirement to do so but it conforms with principles of good ethical decision-making. Second opinions can be most successful when families have a chance to meet the clinician giving the second opinion before they meet the child.
• In extreme cases where parental behaviour is impacting on clinical care – consider behaviour contacts. Exclusions may be necessary as a final resort.
• If parents request that their child is transferred to a different hospital – fully explore their reasons and consider mediation. Decision-making must be guided by the child’s best interests. The court will be the final decision-maker in extreme cases where conflict cannot be resolved.

Managing Media Interest

• Ensure all media requests are managed by designated appropriately trained staff
• Engage with the media positively without breaching confidentiality. Resorting to ‘no comment’ is unhelpful.
• Advise staff on the importance of avoiding engagement with social media except by the hospital’s designated communication team

Comment

The RCPCH guidance emphasises the importance of hospitals having robust strategies in place for the prevention, identification, and management of conflict between families and health professionals caring for children with complex or life-threatening conditions.  It emphasises the importance of health professionals listening to and respecting parents’ wishes and views when making treatment decisions about a child. Nevertheless, the child’s best interests must always be the paramount consideration in all treatment decisions. In the event of intractable disagreement, the court remains the final arbiter as to where a child’s best interests lie.

KATHRYN RIDDELL

Partner in Sintons Healthcare Team

If you have any questions or require any advice on the issues discussed in this article please contact Kathryn Riddell on: (0191) 2267829 or kathryn.riddell@sintons.co.uk