Malik was born at 32 weeks gestation after an otherwise unremarkable pregnancy to parents of Iranian descent who identify as Shia Muslim. Malik had Respiratory Distress Syndrome and required mechanical ventilation until day five, with nasal continuous positive airway pressure for an additional four days. After three weeks the team noticed he had a distended abdomen and his clinical status deteriorated to the point of reintubation. After an evaluation, the team discovered a malignancy involving his small bowel, liver, diaphragm, and abdominal wall.

The pediatric oncologist was consulted by the NICU. She determined that the prognosis was very poor, and that infants diagnosed with this kind of aggressive malignancy usually lived only two months. She explained to the parents that there are no long-term survivors known in the literature, but that she’d reach out to an authority on this malignancy at another medical center who may know more. This authority confirmed the dismal prognosis and recommends against chemotherapy or other aggressive treatments due to a lack of efficacy.

When the pediatric oncologist spoke with the parents and team about the recommendations, the parents appeared to understand the prognosis. They agreed not to try chemo or other aggressive therapies. However, they requested that in keeping with the tenets of their Muslim faith everything be done to keep Malik alive as long as possible. Along with this, they refused a Do not attempt resuscitation order (DNAR) and clearly stated that they wanted cardiopulmonary resuscitation (CPR) if Malik’s heart slows or stops and that they do not want to ‘give up’ on their son.

It’s been three weeks since this initial decision and the parents have not changed their minds on refusing a DNAR or on whether CPR should be used. Malik has continued to deteriorate, and the team believes that he is often in pain.

How should the team proceed?

References for Ethics in the Context of Neonatal Care:

Green, Ronald M. and George A. Little (Eds.), Religion and Ethics in the Neonatal Intensive Care Unit, Oxford University Press, 2019. https://doi.org/10.1093/med/9780190636852.001.0001

Lantos, John D. and William L. Meadow. Neonatal Bioethics: The Moral Challenges of Medical Innovation. Johns Hopkins University Press, 2006. Project MUSE, https://doi.org/10.1353/book.3245

Additional Resources on Moral Distress: