Adequacy of palliative care in a single tertiary neonatal unit

End-of-life care remains part of the scope of practice in all neonatal units. This study aimed to characterise the end-of-life care provided in an Australian tertiary neonatal centre, where paediatric palliative care was accessible via a consultative service.

This retrospective cohort study examined indicators of quality palliative care provided to 46 infants born within a 30-month period. The cohort included four infants who received palliative care consultations additional to usual neonatal care. The care provided was characterised using descriptive statistics.

The most common causes of death were congenital abnormality (37%) and complications of extreme prematurity (22%). Very high proportions of infants and families had family meetings (100%), social worker involvement (100%), memory-making opportunities (100%) and discussion of autopsy (91%). Opiates were prescribed to 76% in the last day of life; most (89%) were administered intravenously. For those prescribed opiates, the median parenteral morphine daily equivalent was 290 mcg/kg/day (interquartile range = 317) in the last 24 h of life. Antenatal resuscitation planning for families of a fetus with a prenatal diagnosis (9%), discussion of preferred location of death (9%), verbal communication with general practitioners (15%) and access to specialised bereavement care (3%) were infrequently provided.

At the time of this study, the neonatal unit was not meeting all of the end-of-life care needs of infants and their families. Care was generally more comprehensive when the palliative care service was consulted.