Gaining consent for publication in difficult cases involving children

摘要

We recently wrote a case study on the treatment and care of an infant with spinal muscular atrophy type 1, an inherited disorder causing progressive muscle weakness without apparent intellectual impairment leading to complete paralysis and, without intervention, to death in infancy from respiratory failure. Our discussion focused on the fact that the parents wished their child to be kept alive by mechanical ventilation. Continuing ventilation was contrary to usual current Australian practice but consistent with a 2006 English High Court judgment relating to a child with the same disease. We had varied views about the harms and benefits of continuing invasive ventilation for children with spinal muscular atrophy type 1, but we all thought that it was not in the best interests of this particular child.