Lies We Tell Sick Children: Mutual Pretense and Uninformed Consent in Cancer Narratives

In “A Person’s a Person: Children’s Rights in Children’s Literature,” Jonathan Todres and Sarah Higinbotham write that “children’s literature [has] been ignored as a rights-bearing discourse” yet “literature is a source of law for children” (1). In this spirit I propose reading children’s books about cancer as potential rights-bearing, or rights-suppressive, discourses, through the lens of anthropological findings about actual children facing potentially terminal illness. Myra Bluebond-Langner, in her 1978 study of children with leukemia, The Private Worlds of Dying Children, depicted a range of denial, deceit and rare honesty she witnessed and rigorously collected, most frequently demonstrating “mutual pretense,” an unspoken consensus in which “each party defines the patient as dying but acts otherwise,” resulting in hopeful expression only (199). Rather than encouraging child patients, such denial further burdens them with keeping up a masquerade while denying their need for “open awareness,” which would allow freely discussing concerns, questions, and fears (220–21). High-profile cases from news media suggest that this trend is on-going in spite of positive developments codifying child medical rights, demonstrating how mutual pretense infringes on the right to informed consent.

Adults often actively withhold the truth from dying child patients, denying their rights to medical honesty, awareness, and agency. I will demonstrate how pervasively popular American adult narratives for children about cancer mirror the same relation—most often modeling “mutual pretense” rather than “open awareness” by either depicting dishonesty towards the dying in their representations without critique or by directly lying to the reader, thus perpetuating a rights-suppressive discourse. The few exceptions that critique mutual pretense help to highlight the dominant practice but also suggest that through more recent and mature narratives about cancer, open awareness (and thus implicitly, informed consent) is encouraged.

Considered within the ethical parameters of child medical rights, texts as diverse in ethnic and historical contexts as Eleanor Coerr’s Sadako and the Thousand Paper Cranes (1977), Virginia Hamilton’s Bluish (1999), Cynthia Kadohata’s Kira-Kira (2004), and David Small’s Stitches (2009) depict and sometimes perform the same denial and dishonesty, demonstrating the pervasiveness of a protectionism that in fact impinges upon children’s participatory rights to full knowledge and self-determination of their bodies. Ultimately cancer narratives tend to protect parents during their emotional struggle to support children rather than respecting young patients and readers by acknowledging their right to be informed and participate as knowing medical subjects. The pretense of “getting better” and “thinking positively,” though sensible in the abstract, simply imposes a greater emotional and social burden on a suffering child. Children’s literature should instead foster open awareness, which the characters in Jodi Picoult’s My Sister’s Keeper (2004) and John Green’s The Fault in Our Stars (2012) argue for consistently while foregrounding how difficult it is to achieve.

Mutual Pretense in “Cancer Books” for Kids

In John Green’s 2012 novel, The Fault in Our Stars, narrator Hazel Grace Lancaster, a sixteen-year-old with thyroid cancer that has spread to her lungs, describes her favorite book: “it’s not a cancer book, because cancer books suck” (48). The main character of her favorite novel has cancer, but “Anna is honest about all of it in a way no one else really is” (49). Throughout The Fault in Our Stars, Green reminds his readers that dishonesty pervades popular discourse surrounding young people with life-threatening illness, and his novel invites us to consider not only how deceptive cancer books for young people can be, but also how dishonesty about terminal disease can dominate family dynamics, hospital conversations, even social media and public ritual. Green clearly positions his own novel against a traditional formula of sentimental denial—a formula so well known that Saturday Night Live did an off-color but on-point parody trailer of the film adaptation called The Fault in Our Stars 2: The Ebola in Our Everything, clearly referencing the formula even more than Green’s novel. The schmaltzy mess made of Jodi Picoult’s My Sister...