To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure

To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure

Martinez I; Hoppmann A; Perna S; Byrd P; Wolfe J; Aye J; Johnston EE

Journal of Pain and Symptom Management

2021

Child; Humans; Bereavement; Pediatric oncology; Disclosure; Grief; End-of-life; Disclosure of information; Family caregiver

Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more nuanced case-by-case approaches to disclosure of information to children. 1234 Here we present the case of Ari (names have been changed for confidentiality), a 10-year-old female with metastatic NUT (nuclear protein of the testis) carcinoma—a rare and aggressive tumor with poor prognosis, 5 , 6 —whose medical course was complicated by parental wishes to withhold diagnostic and prognostic information from their daughter. Coupled with an interview (for an unrelated, institutional review board–approved research study) with Ari's mother 9 months after her daughter's death, the medical team's experience highlights the complexity of navigating care for families who desire to withhold medical information from their child. We use this case as an opportunity to discuss the current literature on child and young adolescent preferences for disclosure of information and highlight existing guidelines around pediatric disclosure that can help clinicians when there are disagreements about pediatric disclosure.

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August 2021 List