**4. Family-centred care**

The delivery of palliative care to a child in PICU often represents a shift away from technical critical care interventions and cure-focused management. Emotional support and quality of life become key priorities, in addition to a focus upon family- centred care.

End of life decision-making for a child is a complex and emotional process and encouragement of a family-centred approach has been shown to result in greater family satisfaction [39]. Information sharing with the family and their participation in the decision-making process are both important.

The medical team should pay close attention to the information needs and preferences of patients and their families [40], particularly when providing technical information within the often stressful PICU environment. Difficult conversations

may take place during a challenging and exhausting time for the family, and professionals should provide measured and consistent communication.

Key to collaborative decision-making is a steadfast and trusted relationship between the family and those involved in the child's care. It is important to recognize that not all families will want to lead the decision-making process, particularly regarding end of life care [7]. We see a spectrum of preferred decision- making roles with some families expressing a preference for delegation of decisions to clinicians, and others wanting a more prominent role in the process [41].

Family-centred care should also focus on maintaining the dignity of the family throughout the child's PICU stay. The physical and cultural environment in PICU exerts a contextual influence on the delivery of care [42] and, even simple institutional efforts can have a profound impact on the family. Forgoing visiting restrictions to allow parental presence at the bedside, provision of family accommodation and simple measures such as covering the cost of car parking and meals will support the family during this difficult time.
