Background The care of infants with life-limiting conditions is complex, complicated with prognostic uncertainty, lengthy hospital stays, invasive procedures, the prospect of sudden deterioration and death. Palliative care can be provided in parallel with treatment that is curative or aimed at prolonging life, which aligns with delivering family centred care, prioritises quality of life, and includes bereavement support. 

Aim To explore and characterise the care management trajectories of infants with life-limiting conditions, who died under 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from cure-orientated to palliative care and specialist palliative care team involvement.  

Methods A retrospective patient health record review of infants who died under 12 months with life-limiting conditions and received care at three hospitals in Western Australia. Two data analysis methods; directed content analysis and care management process mapping. 

 

Results A total of 45 patient health records were reviewed. Process mapping led to typology of care management encompassing four trajectories; early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until a significant point; and early treatment limits. Standardised advance care planning processes were used for just over 10% of infants. There was specialist palliative care team involvement for 25% of infants.