Children’s understanding and consent to heart surgery: Multidisciplinary teamwork and moral experiences

Abstract

Mainstream law and ethics literature on consent to children’s surgery contrasts with moral experiences of children and adults observed in two heart surgery centres. Research interviews were conducted with 45 practitioners and related experts, and with 16 families of children aged 6 to 15, admitted for non-urgent surgery, as well as an online survey. Thematic data analysis was informed by critical realism and childhood studies. Impersonal adult-centric mainstream literature assumes young children cannot consent. It is based on dichotomies: adult/child, competent/incompetent, respect or protect children, inform or distract them, use time swiftly or flexibly, verbal/non-verbal communication, respect or control children and reason/emotion. Through their moral experiences, adults and children resolve these seeming dichotomies. Through understanding young children’s reasoning and emotions about complex distressing decisions related to heart surgery, adults share knowledge, control, trust and respect with them. They see children’s consent or refusal before non-urgent surgery as a shared personal moral experience within the child’s life course, beyond mere legal compliance. Adults help children to understand and ‘want’ the surgery that offers things they value: better health or to ‘be more like their friends’. If children are not convinced, sometimes surgery is postponed or occasionally cancelled.