At a recent Grand Rounds, a leading clinician medical ethicists told of a meeting with members of the family of a critically ill 6 week old boy who had been in a neonatal intensive care unit since birth. At the meeting were the mother and father, both sets of grandparents, an and aunt and uncle, three members of the hospital ethics committee and physicians and nurses who were caring for the seriously ill child. The one question that our speaker posed to the parents and any other family members that chose to offer a response:
"For what do you hope for your son/ grandson/ nephew?"
The mother responded, "No more blood drawing". The child had almost exhausted venous access and appeared comfortable until a blood drawing that required several sticks and intense pain for the child.
The father said, "We want our son home."
A grandmother whispered to her daughter, "We want a baptism".
The physician ethicists said to the family, "Your child is not going to gain weight." The family responded their understanding (your child is going to die). To the chagrin of the clinical team, the ethicists said that we will not draw any more blood and we can arrange for your child to go home.
The child was baptised and died peacefully one week after discharge.
This profound and powerful question is central to advanced illness, end of life care. I believe that we should also reflect on this question much more frequently than we do in more routine medical care. We must be vigilant not to let our own predispositions, value system, and preferences supercede those of the individuals that we austensibly helping and healing.