It can be very difficult to predict when a child is going to die. Some children’s condition deteriorates quickly and unexpectedly while others may rally for a while and live longer than predicted. Either situations can be emotionally and physically exhausting for the family, child and carers.

Patterns of dying

See Amery pg 328

Include trajectories and prognosis here….

Trajectories

See Amery pg 328 18.3.1

Prognostication Amery 329

Barriers to identyfying end of life

Not recognising that a child is dying is a major barrier to providing good end-of-life care. Many healthcare providers do not know how to manage a dying child and their family. They often do not know what to say, so may avoid the situation. However, just being there can be helpful. The memories that parents have of the last days of their child’s life are affected by the quality of end-of-life care.

Some indicators that the child will die soon include:

Physical signs:

• Long periods of sleep
• Decreased urine and stool output
• Deteriorating vital signs such as low oxygen saturation, slower or altered breathing and bradycardia (slow pulse)

Behavioural or emotional signs:

• Not wanting to eat
• Loss of interest in surroundings
• Decreased interaction with family and staff
• Clingy or withdrawn behaviour
• Lethargy or sudden increased awareness
• Not wanting to be left alone
• Talking about “going home”
• Talking of angels, lights or dead relatives
• Talking or drawing pictures of vehicles or journeys