When health care professionals say "more" and parents say "enough".

Abstract

The aim of the present article is to provide an overview of the myriad bioethical issues faced when a family believes that interventions are not in the child’s best interest, but the clinician believes otherwise. The present article will illustrate how an analysis of the ethical issues can provide a way forward. CASE PRESENTATION JD is a two-year-old boy with a history of hypoxic ischemic encephalopathy who subsequently developed severe cerebral palsy. Although he is wheelchair-bound, his family believes that his quality of life is good. He is able to communicate through sounds and gestures, enjoys movies and books – especially cartoons – and loves to interact with their dog. However, over the course of the past year, JD has not been growing well and has experienced significant reflux despite maximizing anti-reflux medications. He has experienced two episodes of aspiration pneumonia, which were managed with oral antibiotics, and has fallen off his growth curve for weight despite optimization of his diet. He continues to be exclusively orally fed. JD’s physician has repeatedly recommended a gastrostomy tube (G-tube), which may help with many of JD’s issues (ie, weight gain, aspiration pneumonia); however, his parents have consistently declined this option. Both the physician and JD’s parents are becoming increasingly frustrated with this topic of conversation because they do not fully appreciate one another’s point of view. A common pitfall in situations such as this can occur when one party assumes that they know the other’s intentions (1). Misperceptions about motivation and goals can be easily resolved through open communication. Therefore, in the present analysis, we will explore the perspectives of the parents and clinician and their intentions.