Growth Attenuation by Commission and Omission May Be Ethically Justifiable in Children With Profound Disabilities

Gunther and Diekema¹ present a unique case report of a child with profound disabilities whose parents requested an active intervention to arrest growth to facilitate caregiving at home. More common is a child with profound disabilities whose annual growth rate is subnormal. In an otherwise healthy child, a workup would include growth hormone (GH) function studies, whereas with this child, the parents and physicians may choose not to test for GH function. In fact, I would argue that it is ethical for the physician to not even suggest a GH workup in this setting. It is not in the child's interest to undergo daily injections to attain larger stature both because of the child's inability to understand the need for the injections and the low likelihood of benefiting from the increased growth. If GH deficiency testing is offered by a physician, one could argue that the parents should refuse the intervention because of the lack of benefit to this child and because the smaller size may facilitate the parents' ability to care for their child.

Some may argue that there is a big difference in intentionally exposing a child to medical procedures to retard growth (commission) vs intentionally avoiding medical procedures to retard growth (omission). However, it is important to realize that the goal may be the same: to preserve an intimate family by facilitating home care rather than institutionalization. Brosco and Feudtner² correctly assert that there is no empirical evidence to show that shorter and lighter children are more commonly cared for at home. Outcome data would be useful for physicians to decide whether growth attenuation treatments by commission should be offered routinely or should be reserved for parents who request it, and whether or not growth attenuation by omission should be standard of care in children with profound disabilities. Outcome data would also be useful for parental decision making.

Concern for abuse led Brosco and Feudtner² to reject growth attenuation by commission. Their concern is valid, but it fails to give adequate respect to the particular families who might make these requests. These are families committed to doing what is best for their children. They are willing to undergo extensive scrutiny of their judgment to be able to do what they perceive as in their child's best interest (contextually determined). While outcome data would be useful, the presumption should be to respect parental autonomy.³

Correspondence: Dr Ross, Department of Pediatrics, University of Chicago, 5841 S Maryland Ave, Mail Code 6082, Chicago, IL 60637 (lross@uchicago.edu).

Financial Disclosure: None reported.