Introduction

The case to be discussed concerns the course of illness of William, which began at birth and continued until his death at 13 years of age. What is significant are the values of the caregivers and the family that led them to acknowledge the need for restraint in the care of this child. These attitudes are specifically discussed in answering the following three questions: Who decides? What are the aims of treatment? Where to die?

The case

William was born on August 17, 1984. He was his mother's sixth child. The following year his mother had twin girls. Apart from William all the children were, and are, healthy. A few hours after a normal birth William was noticed to be cyanosed and unwell. He was admitted to the neonatal intensive care unit where he was found to have a complex form of congenital heart disease with hypoplastic ventricles and pulmonary hypertension. A Blalock shunt, which is a palliative procedure, was performed successfully, though he subsequently required a balloon atreal septoplasty.

From the start it was recognized that he had a rather poor prognosis. At the earliest stage this was discussed with the parents by the cardiologist, who offered an opinion that