Decision-making and Consent of Paediatric Cancer Patients: Between Guidance and Promotion of Child Autonomy

Abstract

Aims: Assessing how medical teams in a paediatric cancer hospital cope with the legal requirement to search for the child’s consent for an inclusion in a clinical trial and children’s participation in tough medical decisions. Study Design: Anthropologic Field Study. Place and Duration of Study: Department of Paediatric Solid Cancer of La Timone Hospital (Marseille, France) between August 2004 and February 2007. Methodology: The author attended medical staff meetings, visits and conversations between doctors, children and their parents. About 200 patients where included in the study. Numerous interviews took place with staff, parents and children, as well as with two cancer-survivors, who were cured of their childhood cancer 30 or 40 years ago. Two “blogs” written by mother of young patients were read in order to assess how medical information was disseminating towards families. Results: The announce of a cancer diagnosis, the search for the child’s consent or participation in tough medical decisions, imply new kinds of relationships between medical teams and children. That modification of positions is not easy for several reasons. First, children do not always feel free to express their views and choices. Besides, these changes disrupt the traditional model of a “medical paternalism”, where physicians would know by themselves what is good for their patients. Above all, confronting children with medical choices may be of the utmost psychic violence, since children are faced with impossible choice or “double bind”. Thus, medical teams have to recognise the child as a person capable of autonomy but also to provide special protection regarding their vulnerability. They experiment different ways to establish a dialog with children, through picturing, “discursive avoidance” and symbolisation. Conclusion: Looking for the right balance between guidance and promotion of child autonomy, medical staff can create some “protected areas”, where children are sheltered from the naked truth by symbolisation and “discursive avoidance”, and where a genuine dialog may be established.