The voice on the other end of the phone describes a newborn baby and a lengthy list of unexpected congenital anomalies. I have a growing sense of dread as I listen. The parents want “nothing done” because they feel that these anomalies are not consistent with a basic human experience. I know that once decisions are made, life support will be withdrawn. Assuming this baby survives, we will be unable to give feed, and the parents will not want us to use artificial means to do so.

Regrettably, my predictions are correct. I realise as I go to meet the parents that this will be the 10th child for whom I have cared after a decision has been made to forgo medically provided feeding. The mother fidgets in her chair, unable to make eye contact. She dabs at angry tears, stricken. In a soft voice the father begins to tell me about their life, their other children, and their dashed hopes for this child. He speculates that the list of proposed surgeries and treatments are …