Highlights
- •Infants with life-limiting conditions comprise of the highest number of deaths in childhood.
- •Many of these infants receive intensive care support until they die.
- •Without integration of palliative care, infants may not be afforded the benefits of palliative care practices.
- •Early integration of palliative may enhance the care provided to infants with life-limiting conditions and their families.
Abstract
Purpose
To 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 methods
Retrospective 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.
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.
Conclusion
Only 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 implications
There 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.
Keywords
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Article info
Publication history
Published online: November 30, 2022
Accepted:
November 11,
2022
Received in revised form:
October 11,
2022
Received:
May 8,
2022
Publication stage
In Press Corrected ProofIdentification
Copyright
Crown Copyright © 2022 Published by Elsevier Inc. All rights reserved.
