Care management trajectories of infants with life-limiting conditions who died before 12 months of age; a retrospective patient health record review

Abstract

PurposeTo characterise the care management trajectories of infants with life-limiting conditions, who died before 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. Design and methodsRetrospective patient health record review of infants with life-limiting conditions who died before 12 months of age and received care at three hospitals in Western Australia. Two data analysis methods; directed content analysis and process mapping. ResultsA 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. ConclusionOnly a proportion of infants received early integration of palliative care principles and practices. Infants and their families may benefit from earlier integration of palliative care, and standardised processes for advance care planning that are done in parallel to treatment. Practice implicationsThere is opportunity to further enhance the delivery of palliative care to infants with life-limiting conditions and optimise the experience for families through education for health professionals, implementation of advance care planning and standardisation through policies and clinical practice guidelines.