G478(P) We want everything done. (12th March 2018)

• Record Type: Journal Article
• Authors: Rasiah, SV; Ewer, AK
• Is Part Of: Archives of disease in childhood. Volume 103:Supplement 1(2018)
• Page Start: A195
• Page End: A196
• Publication Date: 2018-03-12
• Subjects: Infants -- Diseases -- Periodicals; Newborn infants -- Diseases -- Periodicals; Fetus -- Diseases -- Periodicals; 618.920105
• DOI: 10.1136/archdischild-2018-rcpch.466
• Languages: English
• ISSNs: 1359-2998

Abstract

Abstract : Background: Increasingly we are faced with some parents who want everything done for their babies in neonatal units although their neurodevelopmental outcome is likely to be extremely poor. This results in conflict with parents regarding the best interest of these babies and moral distress caused among the neonatal staff looking after them. Case studies: Case A: A 23 week infant who developed major parenchymal haemorrhagic infarct with midline shift and clinical seizures on day 3 of life. Parents were counselled of the very poor prognosis but declined re-orientation to palliative care. Baby never demonstrated a suck or gag reflex. Baby remained in low flow oxygen and required nasogastric feeds. Baby was eventually transferred to a paediatric ward and died following an aspiration episode. Case B: A 24 week infant who became extremely sick before and following NEC surgery. We were never able to establish any enteral feeds. Despite multiple discussions with parents from neonatologists, paediatric surgeons and second opinion from another independent tertiary neonatologist, they refused re-orientation to palliative care. Baby subsequently died from multi-organ failure. Case C: A 28 week infant with multi-organ failure and severe periventricular leukomalacia following a severe case of NEC requiring surgery. Despite seeking second opinions and multiple attempts at counselling parents, palliative care was declined. This case eventually went to court and the judgment was to re-orientate to palliative care which the parents accepted. Conclusion: These increasingly challenging ethical cases result in significant moral distress among neonatal staff that already operate in an high stress environment. In some cases it results in the prolongation of suffering of these babies. This impacts on the moral well being of the nursing and medical staff looking after these babies over this challenging period. We need to remain focused as advocates for these vulnerable babies and continue to keep their best interest at the heart of care we provide. Staff support is also paramount in ensuring that their moral distress is addressed and supported.