Congruent Communication: Addressing Culture and Care for a Seriously Ill Rohingya Infant

Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared decision making can be a complex task that often requires flexibility to respond to the clinical circumstances at hand, as well as contextualization within the family culture. In this paper, we present the case of an infant with a severe congenital brain malformation who was born in an American hospital to a Rohingya-speaking, Burmese family whose care preferences seemed to oscillate between comfort-focused and life-prolonging without clear acknowledgement of the consequences of shifting between treatment plans. Discussion of this case helps to illustrate the cultural factors, ethical challenges, and systems-level issues that can arise for medical teams in seeking to promote patient-centered care that respects family values while also honoring the principle of nonmaleficience.