Adequacy of palliative care in a single tertiary neonatal unit

Gilmour, Deborah, Davies, Mark W. and Herbert, Anthony R. (2017) Adequacy of palliative care in a single tertiary neonatal unit. Journal of Paediatrics and Child Health, 53 2: 136-144. doi:10.1111/jpc.13353


Author Gilmour, Deborah
Davies, Mark W.
Herbert, Anthony R.
Title Adequacy of palliative care in a single tertiary neonatal unit
Journal name Journal of Paediatrics and Child Health   Check publisher's open access policy
ISSN 1440-1754
1034-4810
Publication date 2017-02-01
Year available 2016
Sub-type Article (original research)
DOI 10.1111/jpc.13353
Open Access Status Not yet assessed
Volume 53
Issue 2
Start page 136
End page 144
Total pages 9
Place of publication Chichester, West Sussex, United Kingdom
Publisher Wiley-Blackwell Publishing
Language eng
Subject 2735 Pediatrics, Perinatology, and Child Health
Abstract 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.
Formatted abstract
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.
Keyword Death
End of life care
Infant
Neonate
Palliative care
Perinatal care
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: HERDC Pre-Audit
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Created: Mon, 20 Mar 2017, 20:33:00 EST by Anthony Herbert on behalf of Children's Health Queensland Clinical Unit