On September 14, Center Professor and Acting Director Dr. Leonard Fleck and Dr. Kenneth Pituch, MD, ran an ethics workshop at the Michigan Chapter of the American Academy of Pediatrics (MIAAP) 68th Annual Conference. The workshop, “Ethical Challenges in the Care of Seriously Ill Children,” focused on two cases: a growth attenuation case, and a Trisomy-18 newborn case.
The growth attenuation case involved a 7-year-old boy with severe developmental delay related to a CMV infection in utero. Parents are middle-aged and “not in great health.” They requested growth attenuation hormone therapy so that they would be able to manage the care of their child for many more years. No one doubts that they are devoted parents. The relevant ethical considerations concerned the best interests of this child and parental rights to make medical decisions for their children. On the face of it, it looks like the parents are making this decision for their benefit, i.e., easier care management for this child. While this is true, as the discussion brought out, it is also the case that this would be in the best interest of the child as well. More specifically, this child will not be deprived of any life experiences as a result of growth attenuation because of his severe developmental delay. Hence, growth attenuation does not represent a harm to this child.
Dr. Fleck and Dr. Pituch’s other case involved a Trisomy-18 newborn. In the past these children had dismal prospects. Virtually all of them died before age one, most often because of cardiac anomalies. Today, complex surgeries can be done on these children, all of which are risky. Consequently, some of these children can survive into their twenties, though this will be with severe cognitive deficiencies. The ethical challenge for pediatricians is determining what sort of conversation to have with parents regarding treatment or non-treatment options. In the case discussed, this was complicated by the fact that a representative of a Trisomy-18 support group contacted these parents one day after the birth to “assure” them that they did not have to choose non-treatment. The problem with these support groups is that they tend to be excessively optimistic and do not know the medically relevant and ethically relevant details associated with prospects for a particular infant. This can complicate the conversation that a pediatrician must have with these parents, and can potentially sow the seeds of distrust. What would clearly be the ethically and practically wrong thing to do would be to tell these parents to pay no attention to these support groups. Overall, the discussion in this workshop was lively and thoughtful.