TABLE 4.
Considerations and Suggested Approaches for Prognostic Disclosure to Children
| Considerations | Recommended Approach |
|---|---|
| Hope and prognosis | |
| Growing divide between diagnosis and prognosis | Ask parents and patients about their hopes; encourage them to identify several hopes by asking, “What else?” Notably, continued hope for a cure does not equate to denial or lack of understanding of terminal prognosis. |
| Role of hope in disclosure | Avoid repeatedly reinforcing negative information to parents, when it may be more beneficial to address their hopes, fears, perceived duties, and expectations. |
| Therapeutic misconception and misestimation with focus on clinical trials | Ask parents what they see as the benefit of a clinical trial. |
| Distinction between realistic and unrealistic expectations of patients and parents | |
| Individual patient considerations | Reassure the patient that he or she is safe to ask any question and, when appropriate, provide opportunities for the patient to have discussions without parents present |
| Unique needs of individual patients | Use open-ended questions, such as, “Tell me what you know about what is making you sick.” |
| Patient’s age, developmental level, and illness experience | Listen for cues that the patient wants more or less information, and reflect these cues to the patient. For example, “It sounds like you might have some questions about your illness.” Or “Would you feel comfortable telling me what worries you most?” |
| Awareness of patient’s communication cues | Ask patients how they prefer to communicate (eg, receive information from parents vs medical team; preference for written materials, pictures, videos). |
| Recognize that younger children often communicate nonverbally through play, and this may be the most comfortable way for them to interact. Several therapeutic tools exist to help assess what the child understands and open conversations (eg, My Wishes,54 This Is My World,55 Shop Talk,56,57 and Hear My Voice58). | |
| Family considerations | Ask parents how decisions are made in their family and about their preferences for prognostic disclosure. |
| Cultural beliefs of family | Ask parents what they think their child may know or understand. Offer an example of ways in which children signal their awareness. |
| Communication style of family (how decisions are generally made) | Provide parents with guidance on how to broach the subject of prognosis with their child. |
| Challenge of balancing parents’ desires and patient’s communication needs | When parents oppose disclosure to their children, use “shuttle diplomacy.”59,60 This diplomatic approach allows all parties to have their voice heard and provides an avenue to deeper understanding of parental beliefs, understanding, and fears. |
| Children and parents may change over time | Revisit parental preferences for communication throughout treatment. |
| Reinforce parent’s sense of being a “good parent.” | |
| Clinician considerations | Strive to create a private, quiet, and safe communication atmosphere without prodding the patient into a discussion they are not ready to have. |
| Manner of telling (who tells, what they say, how it is shared, etc) | Listen to the parents and the child so they can help to guide these sensitive discussions. |
| Considering the purpose of telling | Take a “team” approach to communication, with openness, eg, to disclosure coming from parents, physician, psychosocial clinician, or a beloved nurse. |
| Clinicians’ potential lack of training and comfort with difficult discussions | |
| Importance of support and self-care for clinicians who must repeatedly share difficult news with children |