Talking with children and families about death is one of the most difficult yet most important things a paediatrician must do. It can arouse feelings of sadness, guilt and fear; including the fear that we might cause further pain to families who are already suffering.

Like any difficult task, we often find ways to delay these conversations, or avoid them altogether. But there is a downside to avoiding this conversation. Avoidance denies children and families the opportunity to voice an opinion about the care they really want to receive and where they want that care provided. This may mean they do not have the chance to say and do things that are important to them.

There is evidence that helping parents understand their child’s prognosis and to prepare emotionally and practically for their child’s death reduces the likelihood of complicated grief.

Although paediatricians nearly always initiate conversations about advance care planning, at least 50 per cent of parents have seriously considered withdrawal of treatment before the question is raised (Meyer et al. 2002).

Families who need to discuss advance care planning may not raise it with their child’s paediatrician for fear of upsetting them or being seen to be ‘letting the team down’.
Signalling your willingness to have the conversation can provide a sense of relief to families who often have no one else to talk to about these difficult decisions.

This guide is intended to help paediatricians approach advance care planning by offering ways of framing the discussion and providing examples of phrases that can be used.
While words are important, it is your compassion and humanity in sharing this difficult task that families will remember.

‘Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.’

Atul Gawande (2014)