Case: Access to long-shot therapies during a global pandemic

Mrs. R is a 30-year-old pregnant woman, currently 36 weeks gestation. Her pregnancy is complicated by a prenatal diagnosis of CHAOS (chronic high airway obstruction syndrome), in condition in which the trachea or larynx are obstructed, leading to severe pulmonary, cardiac, and other complications. The prognosis for this infant after delivery is thought to be poor, with a high chance of death before NICU discharge, due to the combination of high suspicion for complex airway malformation, heart failure, and a suspected genetic disorder). Mrs. R and her husband have healthy 2-year-old daughter. Mr. R works in construction, and Mrs. R works as a house cleaner. Mrs. R has been receiving her prenatal care through the local academic medical center in the university town where they live. Mrs. R was offered pregnancy termination earlier in the pregnancy but declined on the basis of her religious beliefs and values and expressed for their baby to receive all available life-prolonging interventions. They declined amniocentesis for further genetic evaluation. Following prenatal consultation with a multi-disciplinary team (Maternal-Fetal Medicine, Neonatology, Pediatric Surgery, Pediatric Palliative Care), they elected to proceed with a scheduled cesarean delivery with EXIT procedure (ex utero intrapartum treatment), to allow surgical airway management for the infant before separation from placental circulation.

Due the SARS-CoV-2 (Covid19) pandemic, circumstances at their medical center have changed. In the face of increased patient census and acuity, and high-level directives to divert resources (including health care workers), the multidisciplinary fetal team has been asked to reconsider plans for upcoming high-risk deliveries. Prior to the pandemic, the multidisciplinary team was willing to offer a trial of therapy, including resource-intensive interventions such as intensive care, ECMO and blood transfusion, as these resources were not felt to be scarce. Now, however, the team has decided that because of the poor prognosis for survival, and because even a trial of therapy would be very resource-intensive, an EXIT procedure and trial of therapy should no longer be offered.

The expectant parents are understandably distressed to learn of this decision. While they understand that the health system is facing an unprecedented crisis, they ask “Why should our baby not be given a chance, so that the elderly can use the resources?”

Questions for discussion:

1. Is it ethically permissible to rescind the offer of a trial of therapy?

2. What ethical principles should inform decision-making about where limited resources should be utilized?