Management and Referral of Infants on a Palliative Care Pathway in NICU.
Clinical Practice Committee
Prepared by Simon Rowley
For babies and their families with/without an antenatal diagnosis on the NICU
or being discharged home on a palliative care pathway
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.
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.
The Newborn Homecare Team will initiate care and visiting once home, but it is anticipated that transfer of home care to Starship Hospital Home Care will occur at the same time as transfer of medical care.
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.
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.
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.
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).
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