Disagreements in the care of critically ill children
Bioethics Briefing Note
Who is affected?
Protracted disagreements can have far reaching effects, particularly when they are played out in public as has happened in a number of cases. The effects of a protracted disagreement can be felt long after a decision has been reached. For the child, it can mean a delay in a decision about their care and treatment, during which time they might undergo many painful procedures in the intensive care unit.5 For the parents and family of the child, there can be severe distress and anxiety, commentary and abuse from external parties, and financial strain. Healthcare staff can also experience significant distress and anxiety,6 and they might be subjected to intimidation and abuse. Other parents of critically ill children might lose trust in, or feel guilty about, decisions made about their own child. For healthcare services more broadly, protracted disagreements go against their general aim to maintain healthy relationships between staff and patients. There can also be significant time and resource implications, decreases in staff morale, a potential loss of public trust in the NHS, and damaging reputational effects both in the UK and abroad.
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5 Such as inserting or removing tubes in the child’s veins or windpipe, insertion of catheters, and nasal, tracheal and gastric suctioning. See, for example, Simons SHP et al. (2003) Do we still hurt newborn babies? Arch Pediatr Adolesc Med 157: 1058-64; Walker SM (2013) Biological and neurodevelopmental implications of neonatal pain Clin Perinatol 40: 471–491; Verstraete S et al. (2018) What’s new in the long‑term neurodevelopmental outcome of critically ill children Intensive Care Med 44: 649–651.
6 The term ‘moral distress’ has been defined as the anguish experienced when a health professional makes a clear moral judgement about what action he/she should take but is unable to act accordingly due to constraints. Moral distress in families is also starting to be recognised. See, for example, Field D et al. (2016) Moral distress: an inevitable part of neonatal and paediatric intensive care? Arch Dis Child 101: 686-7; Larson CP et al. (2017) Moral distress in PICU and neonatal ICU practitioners: a cross-sectional evaluation Pediatr Crit Care Med 18: e318-e326; Hurst DJ (2018) Moral distress in families Nursing made Incredibly Easy September/October.