As previously stated, one of the greatest barriers to good end of life care in not recognising that the child is actively dying. In the terminal stage, there will be noticeable physical, behavioural and emotional changes. In addition, events can speed up rapidly as the child’s condition deteriorates and symptoms may worsen. There will be a need to start assessing more frequently than before.
The key then to good end of life care is thorough assessment and planning for the worst case scenario’s while still hoping for the best.