This discussion guide provides an excellent and detailed resource to assist paediatricians plan care with the parents of children with life-limiting conditions. Good communication within the treating team, and between families and staff, is vital.

At The Royal Children’s Hospital Children’s Bioethics Centre, we have seen many case consultations involving children with life-limiting conditions. These cases are often characterised by difficulties in achieving a shared understanding of treatment goals.

This may have been due to a lack of consensus within the care team, or as a result of disagreement within families, and between families and the treating team. These

situations often lead to widespread moral distress and anxiety for everyone concerned.

Overcoming these issues requires a clear understanding of the need for clinicians

to take responsibility for clinical decisions, and to provide guidance to families based on their expertise.

It is crucial to appoint a lead clinician who has the responsibility to achieve a consensus view among the different specialists and treating teams. This person should also take the lead in communicating, counselling and negotiating with patients and their families.

Clear and early communication of diagnosis and prognosis helps families to understand what is happening and builds a foundation for discussions about goals of care.

The essential component to achieving all of these is effective communication.

Developing an advance care plan has always been an implied, if not explicit, part of good medical practice and with rapid progress in technical capability it is now more important than ever.

Every child’s life tells a unique story and ‘in life, as in any story, endings matter’ (Jing 2015).

Dr Hugo Gold