Joseph's wishes: ethical decision-making in Duchenne muscular dystrophy

Abstract

The death of a child is an uncommon occurrence and can be difficult for families to accept. Attempts by the healthcare team to discuss end-of-life issues can be so upsetting to families that they refuse to participate in the discussion. Even with diseases where an early death can be anticipated, such as Duchenne muscular dystrophy, the family is often reluctant to discuss end-of-life issues when the patient is relatively healthy, preferring to focus on the current health issues. In this article we discuss what happens when there are disagreements between the patient and family and the needs of both must be taken into consideration.