Congruent Communication: Addressing culture and care for a seriously ill Rohingya infant

Title

Congruent Communication: Addressing culture and care for a seriously ill Rohingya infant

Creator

Treat L; Macauley R

Publisher

Journal of Pain and Symptom Management

Date

2022

Subject

 Pediatric Palliative Care (PPC); Pediatric Ethics; Cross-Cultural Communication; Rohingya; Culture; Rohingya culture; Cross-Cultural Communication; Pediatric Ethics; Pediatric Palliative Care (PPC)

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

January List 2023

Collection

Citation

Treat L; Macauley R, “Congruent Communication: Addressing culture and care for a seriously ill Rohingya infant,” Pediatric Palliative Care Library, accessed July 15, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18567.