Acute loss of the small bowel in a school-age boy. Difficult choices: to sustain life or to stop treatment?

UNLABELLED: A 9-year-old boy lost almost all his small bowel after an acute volvulus due to a congenital, but previously unsuspected malrotation. Survival using total parenteral nutrition is possible in these cases, but the medical burden is heavy. Small intestinal transplantation was performed for the first time in the Netherlands in 2001 and this patient was treated 3 years earlier. The results of bowel transplantation are not as good as in kidney or liver transplantation. A method of Ethical Case Deliberation helped to elucidate the importance of each contribution in the discussion and provided space and a broad basis for decision-making. The parents refused to allow parenteral nutrition to be started because of the bad prospects for quality of life in the future and the medical team, after thorough deliberation with specialists throughout the country, and consultation of the literature, agreed.
CONCLUSION: Despite the many different opinions, the parents felt accepted in their refusal of treatment for their son and the team accepted the decision.