• Avoid repeated efforts to ‘convince’ parents
• Listen to the family’s concerns and try to understand their perspective
• Allow the expression of emotion
• Avoid efforts to ‘make the family understand reality’
• Be patient (rushing to achieve consensus may be counterproductive).

There may be times when the family’s understanding or opinion of what is best for the child differs from that of the medical team.

The family may have misperceptions about what the medical team is proposing. There may have been previous miscommunication or misunderstanding of the child’s status, or the medical team may have made incorrect assumptions about what the family’s true concerns are. There may be a lack of trust.

In this situation it is crucial to slow the process down and attempt to better understand exactly where the family’s concerns lie in order to reach a consensus about the child’s care.

Try to put aside your personal feelings and prior assumptions, and listen very carefully to the words the family uses.

Acknowledge the emotions they express and their desire to do their best for their child. These validations can help build trust.

Things you can say:

‘I can see that you are very distressed with what I have said. Can you tell me what you are thinking?’

‘I’ve heard you say that you wish to do everything to keep your child alive. What is in your mind when you think about “doing everything”?’

‘Can you tell me what you hope a tracheostomy will do for (child)?’

‘Many parents tell me they feel trapped in a dilemma: should they make every effort to keep their child alive or should they make sure their child doesn’t suffer? Is that how you feel too?’

Common themes in disagreement include:

• overestimating the likely success of treatments and interventions
• feeling mistrust of clinicians, medications or procedures
• families feeling overwhelmed by grief or guilt
• families not wishing to be the instigators of their child’s death.

It can be very powerful to empathise with a parent’s wish for their child to survive. This creates common ground. After all, in these terribly sad situations, we all hope for things to be better (Quill, Arnold and Platt 2001).

Offer a simple, short statement and try to remain silent afterwards.

Things you can say:

‘I wish we were wrong.’

‘I wish there could be a miracle.’

‘I wish CPR could change what is happening.’

Different spiritual beliefs can also feed into a difference of opinion between medical staff and families.

‘Unpacking’ and exploring the source of the disagreement can reveal gaps in parental understanding, improve clinician understanding of family dynamics and perspectives, and offer opportunities to find common ground.

Time and good communication resolve most disagreements. During this process, clinicians may need to tolerate and manage uncomfortable ambiguity. It is rare that the impasse persists.

In these circumstances it can be helpful to seek a second opinion, consult with a clinical ethics committee if available, or seek input from the hospital’s executive team. It may be necessary to seek a legal opinion.