Presented at the Neonatal Society 2015 Spring Meeting.
Aladangady N1,2, Shaw C1,3, Gallagher K3, Marlow N3 for Collaborator Group
1 Neonatal Unit, Homerton University Hospital, London
2 Centre for Paediatrics, Barts and the London School of Medicine and Dentistry, QMUL, London
3 Institute for Women’s Health, University College London, London
Background: Withdrawal of Life Sustaining Treatment (LST) for newborn infants was first described in 1973 (1). There are no prospective multicentre studies of the outcomes for babies for whom redirecting Life Sustaining Treatment has been considered (2,3). Aim: To determine the short-term outcomes of infants for whom clinicians or parents have started discussions about the withholding or withdrawal of LST and/or institution of “do not resuscitate” (DNR) orders.
Methods: Utilising a secure on-line database (RedCap), we prospectively collected neonatal unit outcomes (death or discharge home) and care practices for babies for whom limiting LST was considered over one year in 9 hospitals in the NEL Neonatal Network. The study was funded by a Programme Development Grant (NIHR) and approved by the East London REC.
Results: Data from 88 infants (58 males) were studied; mean gestational age 30.1 (SD: 6.8) weeks, birthweight 1592g (SD: 1165). Limiting LST was discussed with parents of 67 infants and in 2 cases discussions were only among the clinical team. Limiting LST was first raised by clinicians in 64 cases and by parents in 3 cases; 23 discussions concerned withholding LST, and 47 withdrawing LST.
Following initial discussions, 33 parents (49%) were not in agreement with the clinical team. The parents of 13 infants (27.7%) did not agree for withdrawal of LST. In contrast, of 24 parents specifically asked, all agreed to make a DNR Order.
Fifty infants (56.8%) died following limitation of LST, 25 (28.3%) died receiving full intensive care support, 5 (5.7%) survived despite parents agreeing to limit LST and 8 (9.1%) infants survived as result of non-agreement to limit LST. Following limitation of LST, a significantly lower proportion of parents were offered an autopsy (n= 25) or agreed to one (n=6) compared to infants died receiving full intensive care support (17 parents offered and 10 agreed; p=0.018).
Conclusion: A significant number of parents do not agree with professional opinion to limit LST for their infants and a significant proportion of these infants survive. Reasons for non-agreement are being sought as part of our continuing study.
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1. Duff and Campbell. N Engl J Med 1973
2. Nuffield Council on Bioethics 2006
3. N Aladangady. Early Human Development 2012