Abstract
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.
Key Words
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References
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Rohingya Refugee Crisis. United Nations Office for the Coordination of Humanitarian Affairs (unocha.org).
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Article info
Publication history
Published online: December 06, 2022
Accepted:
November 26,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
