When a child is diagnosed with a serious illness, the news can be devastating to families, who naturally feel protective and may be worried about sharing the diagnosis and prognosis with the patient. The American Academy of Pediatrics helps physicians and families navigate these challenging circumstances with a new clinical report, “Responding to Parental Requests for Nondisclosure to Patients of Diagnostic and Prognostic Information in the Setting of Serious Disease.”
The report, published in the October 2023 Pediatrics and published online Sept. 25, offers practical strategies, informed by ethical, historical, legal, and cultural considerations, when discussing what information should be shared with a pediatric or adolescent patient.
Clinical reports created by AAP are written by medical experts, reflect the latest evidence in the field, and go through several rounds of peer review before being approved by the AAP Board of Directors and published in Pediatrics.
The AAP recommends that the default position should be to include children in conversations surrounding their diagnosis and prognosis in a developmentally appropriate fashion, to the extent that patients are comfortable. Rather than taking away hope, as some may fear, this approach of openness may create a space for children to ask their questions, share their concerns, and set goals that are appropriate to the circumstances.
“Research has shown that even very young children with serious illness know much more about their illness than adults often believe,” said Sara Taub, MD, MBE, FAAP, co-author of the clinical report. “Without disclosure, as children hear the conversations around them, they glean partial information and may weave together stories that are more frightening than reality.”
For cases in which health care teams and families may have different attitudes towards disclosure, the report provides strategies to find middle-ground while preserving partnership, as well as proposed steps where differences persist. In situations where pediatricians feel ethically obligated to share diagnostic or prognostic information, despite the parents’ request for non-disclosure, pediatricians can reframe the discussion from whether information should be shared with the patient to what information will be communicated, how and by whom.
The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.