P0534 - Cultural complexity as a barrier to shared decision making in neonatal end of life discussions.

Avoidance, insensitivity, and poor communication were among the most important parental stressors involved in end of life care of their infants. End of life care discussions are complex and nuanced, and often include much more depth than just the decision to withdraw support or alter goals of care. Barriers to effective communication must be thoroughly evaluated and considered prior to any end of life discussion.

A female infant born at 37-week gestation to a nulliparous French speaking mother who recently migrated from Congo with sporadic prenatal care, was admitted to the NICU following a complicated delivery with an emergency caesarean section secondary to prolonged fetal deceleration in utero. On admission infant was with severe hypoxic ischemic encephalopathy (HIE) for which she was started on therapeutic hypothermia. Her initial hypoxic ischemic injuries also included severe cardiac dysfunction and coagulopathy. With her serious conditions, multiple discussions were made using French interpreters. After several encouragement to be involved in decision making, the parents continued to appear disconnected. It was unclear to the medical team what at the core of this disconnect. They reminded me of my patients back in rural Thailand, where I initially did my medical training, and where I would often hear the phrase “whatever you think best doctor”. A multidisciplinary care conference was held as her disease trajectory progressed and again the parents remained mostly silent while the healthcare team explained to them her daughter’s unfortunate prognosis. It was not until the French interpreter, who had been working with the parents since the prenatal period, said “You know, it is ok to ask doctors questions in America.” The parents approach then shifted almost instantly. They participated in all discussions going forward and were actively involved in all end of life decisions. The shared decision-making process allowed parents to be relieved of some of the guilt that is associated with such an immense decision and helped create a sense of closure for parents who had to endure the loss of their newborn child in a foreign setting.

Over the past decades, movement in the United States has been focusing on shifting away from medical paternalism to an emphasis of patient’s autonomy. This model, however, is dependent on effective communication between the medical team and family. Therefore, identifying the key cultural and spiritual characteristics is necessary to allow healthcare providers to provide the framework needed for end of life discussions involving terminally ill neonates. In caring for patients who have different sociocultural backgrounds, we may mistakenly assume problems stem from language barriers or lower educational status or lack of medical decision-making capacity, and we may overlook that there might be more complicated cultural components to the way our patients’ parents are behaving.