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November 2017

Truth Telling in the Setting of Cultural Differences and Incurable Pediatric Illness: A Review

Author Affiliations
  • 1Seattle Children’s Hospital, Cancer and Blood Disorders Center, Seattle, Washington
  • 2Seattle Children’s Research Institute, Treuman Katz Center for Pediatric Bioethics, Seattle, Washington
  • 3Department of Pediatrics, University of Washington School of Medicine, Seattle
  • 4Department of Bioethics and Humanities, University of Washington School of Medicine, Seattle
  • 5Division of Pediatric Hematology/Oncology, The Herman and Walter Samuelson Children’s Hospital at Sinai, Baltimore, Maryland
  • 6Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland
  • 7Department of Medical Ethics, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 8Departments of Pediatrics, Ethics, and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia
JAMA Pediatr. 2017;171(11):1113-1119. doi:10.1001/jamapediatrics.2017.2568

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.

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