The management of a child who is imminently terminal (death expected to occur within a few days or weeks), should include:
- Relieving physical and emotional distress in the child.
- Treating easily manageable complications causing suffering, but not to prolong dying.
- Stopping all unnecessary medicines.
- Limiting hospital admissions or reducing the duration of hospital stays if possible.
- Ensuring that parents/caregivers are adequately counselled.
- Decision making as to preferred place of death (home, hospice, hospital) and referral to community based services where available (hospice palliative and home based care services).
Indications for inpatient hospital or hospice in patient terminal care:
- Hypoxia and respiratory distress where oxygen therapy provides relief.
- IV/nasogastric fluid requirements or medication administration needed to relieve suffering.
- Carer/s unable to cope at home.
Feeds and fluids at the end of life:
- Anorexia and refusal of feeds/fluids in dying patients is a normal phenomenon and not an indication for nasogastric feeds or intravenous fluids as these may prolong dying.
- Encourage the family to ‘feed for comfort only” and reassure them that the dying child is not hungry.
Investigations at the end of life:
- Investigations should be kept to a minimum and only done if it is believed that doing these will shorten the duration of hospital stay or in some way contribute to the child’s comfort.
Antibiotics at the end of life:
- Oral antibiotic therapy may be started, where it is thought that a course of antibiotics could shorten the duration of discomfort or hospital stay.
- Non-treatment of a terminal pneumonia (a common end of life event) is an acceptable palliative care practice.
REFERRAL
Discuss with a specialist:
- Children with symptoms not described here.
- Children not responding to management.