• Lauren Treat and Robert Macauley.
• University of Colorado School of Medicine (L.T.), Aurora, Colorado. Electronic address: lauren.treat@childrenscolorado.org.
• J Pain Symptom Manage. 2023 Mar 1; 65 (3): e225e228e225-e228.

AbstractPediatric 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.Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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