Truth telling in the setting of cultural differences and incurable pediatric illness - A review

Abby R. Rosenberg, Helene Starks, Yoram Unguru, Chris Feudtner, Douglas Diekema

Research output: Contribution to journalReview articlepeer-review

25 Scopus citations

Abstract

IMPORTANCE: Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values. OBSERVATIONS: To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient’s best interest. CONCLUSIONS AND RELEVANCE: It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.

Original languageEnglish (US)
Pages (from-to)1113-1119
Number of pages7
JournalJAMA pediatrics
Volume171
Issue number11
DOIs
StatePublished - Nov 2017

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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