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NICU guideline identifier

Palliative care pathway in NICU

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For babies and their families with/without an antenatal diagnosis on the NICU or being discharged home on a palliative care pathway

What is Palliative Care

Palliative care is the active, holistic care of children and their families at a point in time where active, curative options have been exhausted. It is a concept of care which provides co-ordinated medical, nursing, and psychosocial services to children and their families.
It is important to acknowledge that often there is uncertainty about the future and many of these infants will survive in the short and medium term.

Medical care

All infants on palliative care pathway need to be under a Paediatric Medical Specialist as well as the Palliative Care Team. This is usually initially under the Neonatal Team, but ongoing medical care in the community is likely to be under General Paediatricians or Developmental Paediatricians who generally visit the family before discharge. Other specialists, e.g. Cardiologists, Metabolic Specialists or Neurologists, may also be involved. Our Social Work and/or Consult Liaison Teams will usually have extensive contact with the family as well and can liaise with community services. The General Practitioner also has a key role. Timing of handover will vary but is usually within a few weeks.

Neonatal Homecare

The Newborn Homecare Team will initiate care and visiting once home, but it is anticipated that transfer of home care to Starship Community will occur at the same time as transfer of medical care.

Palliative Care Referrals

These may be antenatal, and it can be useful for teams to have met the parents and discussed anticipated management before delivery. Liaison between Obstetricians, NICU Specialists and the Palliative Care Team is essential, and can be co-ordinated via the Level 1 Neonatologist on for the week. Discussions should be documented under the mother's NHI.

Discharge planning meeting

A discharge planning meeting should be held with invitations to Neonatologists, Palliative Care Team, Homecare, General Paediatrics or Developmental Paediatrics, any other specialist team already involved e.g. Cardiology, and including Paediatric teams from other DHBs plus the NICU Social Work Team or Consult Liaison Team. It is not usually practical for a GP to attend, but a phone call should be made to inform.

Cultural considerations

Decision-making must take into account the cultural values and spiritual beliefs of families. Culturally sensitive care needs to be introduced early in the illness trajectory. Consider using available cultural support services. For Maori families refer to Tikanga Best Practice guideline.

Advance care plans

Advanced care plans should be completed and shared with all teams. They will include an E.O.L. plan within the document. They need to be lodged on 3M (and nearer discharge logged with the Ambulance Service).

Contact plans - for acute situations

After hours - GP first port of call
During the day - Homecare
Other options - the SSH Acute Team, Paediatrics

If baby dies at home

The infant needs to be seen and have death verified by a qualified person (doctor or nurse). The medical certificate can be signed later by someone from one of the involved teams. (The Palliative Care Team do not offer an after-hours service).

Associated documents

ADHB guidelines
Neonatal palliative care for NZ Neonatal Units
NICU death paperwork
-  Flowchart
-  End of Life Care List
Advance Care Plan - Te Wa Aroha Allow Natural Death

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Document Control

  • Date last published: 30 December 2016
  • Document type: Clinical Guideline
  • Services responsible: Neonatology
  • Owner: Newborn Services Clinical Practice Committee
  • Editor: Sarah Bellhouse
  • Review frequency: 2 years