It’s common for moms and dads to worry that a child’s knowledge of his or her own serious diagnosis could threaten the child’s well-being, so some parents ask physicians to withhold that information. In the past, physicians might have justified this action by referring to “therapeutic privilege,” in which clinicians withhold information when they believe disclosing it could harm the patient’s health.
This notion has been widely criticized as no longer ethically appropriate in modern medicine because of its potential to undermine trust. Although pediatric patients are generally not treated as fully autonomous decision-makers, modern emphasis on a child’s emerging autonomy and self-determination means that physicians should speak truthfully while also soliciting a patient’s and parent’s preferences. Experts outline unintended harms that can result from not telling kids enough.
The AMA Code of Medical Ethics provides guidance on informed consent, such as opinion 2.2.1, “Pediatric Decision Making,” to help physicians engage minor patients in decisions about their own care, including those about life-sustaining treatment.
Following are highlights summarized from an article published in the AMA Journal of Ethics® (@JournalofEthics) by bioethics researchers Eric Kodish, MD, and lawyer Cristie M. Cole. Using a hypothetical case of a 9-year-old girl diagnosed with acute lymphocytic leukemia, they note four specific risks of withholding medical information.
What if the child hears it from another source? A family member or a clinical team member could unintentionally reveal the information. The patient could also find it on her own—through, for example, her medical record, an internet search or a voicemail. This can undermine trust in the patient-physician relationship and prove detrimental to the patient’s care.
She might already know (sort of). “More often than not,” the authors wrote, “the child is aware of the hushed whispers and discussions among grown-ups and can ascertain that a secret exists that is not to be discussed.
“The child may know to some degree what that secret is, whether he or she knows the specific disease, the severity of the illness or that he or she is dying from the disease … [a situation] often called ‘mutual pretense’—all parties including the child know the child is dying but act as if he or she were not.”
Not knowing can be worse. Research shows that not knowing a diagnosis may cause a child to assume the worst. Without an explanation for why she feels bad, the child may imagine a reason for the secrecy, such as that she is being punished.
There is also evidence that children who are unaware of their diagnoses experience no less distress than those who are told about a life-threatening illness; in fact, in some cases, they might experience more anxiety. Not understanding a diagnosis can also cause nonadherence, particularly in older children.
Evasive answers won’t square the circle. Contingent answers, narrow answers, nonanswers and answers in the form of questions don’t resolve a physician’s duties to express respect for parental authority and be honest with the child.
Tips for moving toward disclosure
When the child’s experiences, age, developmental status and the health effects of knowing a diagnosis permit disclosure suggests that temporarily withholding a diagnosis might be helpful, the authors recommended these steps.
- Be careful not to appear to be seeking parental permission for the disclosure. Instead, clearly communicate that it will be withheld temporarily and disclosed within a finite period of time.
- Allow the parents some control by offering options for how the disclosure takes place: by them alone, together with the physician or by the physician alone.
- Explain that diagnostic disclosure is a process and that prognosis can be discussed with the child separately.