In the name of the family? Against parents’ refusal to disclose prognostic information to children

Abstract

Parents frequently attempt to shield their children from distressing prognostic information. Pediatric oncology providers sometimes follow parental request for non-disclosure of prognostic information to children, invoking what we call the stability of the family argument. They believe that if they inform the child about terminal prognosis despite parental wishes, cohesion and family structure will be severely hampered. In this paper, we argue against parental request for non-disclosure. Firstly, we present the stability of the family argument in more detail. We, then, set out the (conceptual, legal, systemic) entitativity of the family and the kind of value the stability of the family argument assumes, before we set on to critically evaluate the argument. Our analysis shows that disclosure of prognostic information to children does not necessarily destabilize the family to a greater extent than non-disclosure. In fact, a systemic perspective suggests that mediated disclosure is more likely to result in a (long-term) stability of the family than non-disclosure. It is in the interest of the family to resist the initial aversive reaction to delivering bad news. In the final part, we draw a set of recommendations on how to facilitate decision-making in face of parental request for non-disclosure.

Communication about diagnosis and prognosis—A population‐based survey among bereaved parents in pediatric oncology

“…Recommendations, of helpful actions for disclosure of a bad prognosis to children when parents refuse, include to observe interaction and patterns of communication in the family to tailor prognostic disclosure to each family, to communicate the valuable outcomes of prognostic disclosure, to promote a feeling of cultural safety by acknowledging the values and beliefs of the family and to consult the ethics committee if needed. 27 Families may have various resources and needs, and some children and parents may need repeated conversations to grasp what has been said and time to process all the information they received, or to ask questions. It is also important to be aware that mothers' and fathers' perceptions of what is clear sometimes differ, and that family-focused care includes taking the needs of all family members into account.…”

“…However, it is important to keep in mind that healthcare professionals are facing challenging situations not only when conveying bad news 25,26 but also when being prevented by parents from disclosing the truth. Parents' reasons for this have been described as fear that the information will overwhelm the child, 27 and that disclosure would negatively affect interactions with siblings and other relatives, leading to instability in the family 22 . Further reasons for non‐disclosure were expected negative psychological consequences for the child such as reduced hope, seclusion, anxiety, and sadness 28 …”

“…Healthcare professionals' knowledge about what is at stake for the parents related to disclosure versus non‐disclosure would most probably facilitate decision‐making and handling of the ethical issues 29 . In a recent paper Rost and Mihailov (2021) argue against non‐disclosure, even though it is the wish of the parents 27 . The authors state that disclosure is recommended since it will lead to continuing stability of the family, contrary to what parents fear 27 .…”

“…In a recent paper Rost and Mihailov (2021) argue against non‐disclosure, even though it is the wish of the parents 27 . The authors state that disclosure is recommended since it will lead to continuing stability of the family, contrary to what parents fear 27 . Moreover, research has shown that children might suffer from increased fear, anxiety, depression and social problems if not informed about their illness and prognosis 28 .…”

“…Even though close to all parents want information when their child's illness become incurable, not all parents want to reveal this to their children. Recommendations, of helpful actions for disclosure of a bad prognosis to children when parents refuse, include to observe interaction and patterns of communication in the family to tailor prognostic disclosure to each family, to communicate the valuable outcomes of prognostic disclosure, to promote a feeling of cultural safety by acknowledging the values and beliefs of the family and to consult the ethics committee if needed 27 …”