What ought to happen when a parent or caregiver asks the health care team not to disclose to a child that the youth has a serious illness or a grave prognosis? And why might these requests arise in the first place?
Pediatricians and other health care professionals have to navigate a commitment to the interests of the child, while caring for the child in the familial context and honoring the authority of parents who make decisions for their child.
A new clinical report examines these questions contextually.
The report Responding to Parental Requests for Nondisclosure to Patients of Diagnostic and Prognostic Information in the Setting of Serious Disease, from the AAP Committee on Bioethics, is available at https://doi.org/10.1542/peds.2023-063754 and will be published in the October issue of Pediatrics.
Historically, attitudes toward disclosure of serious illness have changed dramatically in U.S. medicine over the past half century. This includes pediatrics, where norms have shifted in recent decades toward involving children in their medical care and associated decisions to the best of their ability.
Culturally, the diversity among various groups regarding disclosure deserves to be recognized, approached with curiosity and addressed individually. All group members do not identify with dominant mores; pediatricians, like others in health care, also are held to standards of behavior for their profession.
Legally, most pediatric patients lack authority to make their own treatment decisions, though there are compelling ethical reasons to involve them.
The report looks at reasons why some loving parents may favor nondisclosure, while recognizing inherent challenges and limitations to this approach.
Some reasons for withholding information are a desire to shield children from difficult information; the inability to process the information personally, let alone convey it; and a lack of adequate tools to discuss a severe diagnosis or prognosis. Some arguments in favor of disclosure include avoiding mistrust and protecting children (who may understand far more than they’ve been told) from isolation and anxiety, and encouraging children to take an active role in their care.
The report presents five clinical case vignettes followed to resolution to illustrate strategies pediatricians can use to navigate challenging disclosure-related situations. Through them, the report offers nuance around how disclosure need not be “all or nothing.” In addition to addressing what should be disclosed, it offers guidance on how to partner with families to negotiate when, how and by whom disclosure should be carried out.
The report’s recommendations include the following:
- The default position should be to include children in conversations surrounding diagnosis and prognosis.
- If the parents request nondisclosure, the initial response should be to engage them with openness and curiosity. Health care professionals also should have the opportunity to explain their position(s) to parents and make clear that some obligations are nonnegotiable.
- In situations in which the family’s cultural beliefs weigh against direct disclosure, the patient should be invited to participate in discussions and decision-making.
- In the absence of consensus, certain practical questions should be addressed, including the minimum information that each party believes would need to be shared and who should provide that information.
- As the maturity of the child, the severity of the medical condition, the impact of the condition on subsequent life decisions and opportunities increase, so, too, does the duty to disclose information about diagnosis and prognosis.
- There may be instances in which the medical team is obligated ethically to share diagnosis and prognosis with the patient, despite the parent’s request for nondisclosure.
- Staff should be allowed to share their concerns in a safe and supportive environment.
- Conversations with the family should be documented in the medical record to capture the communication plan and rationale.
Dr. Taub is a lead author of the clinical report. She is a member of the AAP Committee on Bioethics.