Objective To determine the short-term outcomes of babies for whom clinicians or parents discussed the limitation of life-sustaining treatment (LST).
Design Prospective multicentre observational study.
Setting Two level 3, six level 2 and one level 1 neonatal units in the North-East London Neonatal Network.
Participants A total of 87 babies including 68 for whom limiting LST was discussed with parents and 19 babies died without discussion of limiting LST in the labour ward or neonatal unit.
Outcome measures Final decision reached after discussions about limiting LST and neonatal unit outcomes (death or survived to discharge) for babies.
Results Withdrawing LST, withholding LST and do not resuscitate (DNR) order was discussed with 48, 16 and 4 parents, respectively. In 49/68 (72%) cases decisions occurred in level 3 and 19 cases in level 2 units. Following the initial discussions, 34/68 parents made the decision to continue LST. In 33/68 cases, a second opinion was obtained. The parents of 14/48 and 2/16 babies did not agree to withdraw and withhold LST, respectively. Forty-seven out of 87 babies (54%) died following limitation of LST, 28/87 (32%) died receiving full intensive care support, 5/87 (6%) survived following a decision to limit LST and 7/87 (8%) babies survived following decision to continue LST.
Conclusions A significant proportion of parents chose to continue treatment following discussions regarding limiting LST for their babies, and a proportion of these babies survived to neonatal unit discharge. The long-term outcomes of babies who survive following limiting LST discussion need to be investigated.
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Collaborators Bal Sharma, Queen's Hospital, Romford, Essex RM7 0AG; Bal Sharma, King George Hospital, Ilford, Essex IG3 8YB; Imdad Ali, Newham University Hospital, London E13 8SL; John Ho, Whipps Cross University Hospital, London E11 1NR; Lesley Alsford, North Middlesex University Hospital, London N18 1BX; Narendra Aladangady, Homerton University Hospital, London E9 6SR; Sam Mukherjee, Basildon University Hospital, Basildon, Essex SS16 5NL; Syed Mohinuddin, The Royal London Hospital, London E1 1BB; Thilani Ranasinghe, Southend University Hospital, Essex SS0 0RY.
Contributors NM and NA conceived the study, NM led the funding application and all contributors formulated the design and execution of the study. CS and NA reviewed and updated database and analysed the data. NA wrote the first draft and coordinated the manuscript. All authors were involved in interpretation of the data and writing the report. All have seen and approved the final version.
Funding The National Institute for Health Research (NIHR) funded the study (RP-DG-0611-10006). Neil Marlow receives part funding from the Department of Health's NIHR Biomedical Research Centre's funding scheme at UCLH/UCL. The study was sponsored by University College London.
Competing interests None declared.
Patient consent Detail has been removed from these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.
Ethics approval The study was approved by the East London Research Ethics Committee (REC no: 12/LO/1949), and by the Research and Development (R&D) Department of participating hospitals. Parent consent was not required as we used anonymised routinely collected data from medical records.
Provenance and peer review Not commissioned; externally peer reviewed.
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