Institute for Biomedical Ethics, University of Basel, Bernoullistr. 28, 4056, Basel, Switzerland.
Research Centre in Applied Ethics, Faculty of Philosophy, University of Bucharest, Bucharest, Romania.
Med Health Care Philos. 2021 Sep;24(3):421-432. doi: 10.1007/s11019-021-10017-4. Epub 2021 Apr 13.
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.
父母经常试图保护孩子免受令人痛苦的预后信息的影响。儿科肿瘤学的提供者有时会遵循父母的要求,不向孩子透露预后信息,援引我们所谓的“家庭稳定”的论点。他们认为,如果他们不顾父母的意愿告知孩子终末预后,家庭的凝聚力和结构将受到严重阻碍。在本文中,我们反对父母要求不透露信息的请求。首先,我们更详细地介绍了“家庭稳定”的论点。然后,我们阐述了家庭的(概念上、法律上、系统上)实体性以及“家庭稳定”论点所假设的价值类型,然后再对该论点进行批判性评估。我们的分析表明,向儿童透露预后信息并不一定会比不透露信息更大程度地破坏家庭的稳定。事实上,从系统的角度来看,中介式披露更有可能导致家庭(长期)稳定,而不是不披露。抵制传递坏消息的最初反感是符合家庭利益的。在最后一部分,我们提出了一系列建议,以帮助在面对父母要求不透露信息时做出决策。