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.
Physical Signs
Behaviourial and Emotional Signs
Long periods of sleep
Decreased urine and stool output
Deteriorating vital signs such as:
Low oxygen saturation
Slower or altered breathing
Bradycardia (slow pulse)
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Clingy or withdrawn behaviour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