When children have a serious illness, some families choose not to disclose the severity to them, reasoning that knowing the extent of the illness may take away their hope. Deciding whether to tell children or adolescents about the seriousness of their disease is a complex judgment and can pose legal, ethical, and moral challenges for parents and care providers.
Default should be inclusion
The American Academy of Pediatrics (AAP) recommends in a new clinical report that the default should be to include children in conversations about their illness in a developmentally appropriate way, to the extent parents are comfortable.
The report, written by Sara Taub, MD and Robert Macauley, MD, MDiv, both in the department of pediatrics at Oregon Health & Science University in Portland, on behalf of the AAP Committee on Bioethics, was published online and appears in the October issue of Pediatrics.
“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,” the authors wrote in a press release.
The report offers strategies based on ethical, historical, legal, and cultural considerations when discussing what to share with a child or adolescent.
Some of the AAP’s other recommendations include the following:
- If the parents request nondisclosure, the first response should be seeking to understand why they prefer that stance. The care team members should also explain their position to parents.
- If there is no consensus on disclosure, establishing what each party believes is the minimum information that should be shared is important.
- Additional resources to navigate disagreement may be helpful, such as hospital ethics committees, mediators and patient advocates.
- Conversations with the family should be documented in the medical record.
Children may know more than you think
Dr. Taub said that even very young children may know more about their disease than adults believe.
“Without disclosure,” she said, “as children hear the conversations around them, they glean partial information and may weave together stories that are more frightening than reality.”
Sometimes families and the care team disagree on disclosure and for that scenario, the report offers guidance in finding middle ground.
For instance, when pediatricians feel ethically obligated to share information when parents oppose sharing, “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 authors said in a press release.
Should you tell 15-year-old paraplegia is likely?
The authors give a case example of a 15-year-old whose spinal tumor likely will lead to paraplegia within weeks. Very few treatment options are available.
The parents ask the care team to avoid any discussions with the child about prognosis, reasoning that the news will be crushing and it’s better to deal with it if or when it happens.
The care team, however, feels compelled to find out about specific activities important to the child that may no longer be feasible with paraplegia.
The parents cite the child’s love of soccer and desire to see the Statue of Liberty. With that information and keeping the parents’ wishes in mind, the team reframes the conversation with the child in terms of goals, acknowledging that mobility may be more difficult in the future.
That conversation leads the child and the family to discuss moving up the trip to New York they had planned.