Adequacy of palliative care in a single tertiary neonatal unit

Aim: 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. Methods: 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. Results: 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. Conclusions: 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.