When language and words impact discussions and decisions around withholding or withdrawing clinically assisted nutrition and hydration in children with life limiting conditions

A/Prof. Helen Irving1,2, Dr Anthony Herbert1,2, Dr  Erin Sharwood1,2, Dr Jacqueline Duc1,2

1Children’s Health Queensland, South Brisbane, Australia; 2University of Queensland, Brisbane, Australia

It has been established that there is no ethical or legal differentiation between withholding and withdrawing life–sustaining therapies including nutrition/hydration when there is no benefit to the patient. Yet many clinicians struggle when families wish to discontinue nutrition/hydration, or provide what is considered suboptimal nutrition to their child. Clinicians may become morally distressed that the child may ‘starve to death’, but are commonly less distressed by withdrawal of respiratory support, when both are life-sustaining medical treatments.

Individuals have a basic need for food/fluids to prevent consequences of dehydration and undernutrition – in particular, children need nutrition to grow and thrive. In the context of a life-limiting condition however, provision of nutrition/hydration may be burdensome, cease to be of benefit, or lead to avoidable harm. This may result from delivering nutrition/hydration via artificial means, such as nasogastric, nasojejunal or percutaneous endoscopic gastrostomy tubes, or intravenous lines.

Terminology around this subject includes artificial nutrition and hydration (1), medically-provided nutrition and hydration (2) and clinically-assisted nutrition and hydration (3). For the purpose of this paper, CANH will be used, as the authors believe this terminology is most representative.

Withholding or withdrawing CANH remains controversial in the paediatric setting, largely from societal/emotional perspectives (2) around feeding of infants/children who are unable to feed themselves, or indeed consent to any changes in care. For children at end of life, this becomes less controversial – but what about children with life-limiting conditions when death is not imminent? This paper will describe several ‘composite’ patients with life-limiting conditions, and ethical considerations around extent of care provision. The paper will explore pathophysiology, current guidelines and legal cases related to nutrition in children. The role of clinical ethics consultation services and palliative care will also be discussed.

(1)  Tsai 2011

(2)  Diekema and Botkin 2009

(3)  Larcher 2015


Biography:

Dr Irving is the Clinical Lead of the Centre for Children’s Health Ethics and Law (CCHEL), Children’s Health Queensland and Associate Professor, University of Queensland, Faculty of Medicine. Her clinical role is, Pre-Eminent Specialist Paediatric and Adolescent Oncology and Medical Lead for the Queensland Paediatric Haematology, Oncology and Palliative Care Network. Her interest in bioethics stems from the challenges of care and decision making in paediatrics, particularly around extent of and conflict around care at all stages across life and disease trajectories. Dr Irving has completed the Harvard and Monash Bio-ethics Intensive Courses and has a Masters in Bioethics (Monash University).