What can we learn from works of art about autonomy in health in children with complex chronic conditions?
DOI:
https://doi.org/10.11606/issn.2317-2770.v27i2p67-74Keywords:
Autonomy, Pediatrics, BioethicsAbstract
The debate on the autonomy of children and adolescents with complex chronic conditions, defined as any disease that is expected to last for at least 12 months with involvement of multiple organs or systems, requiring specialized monitoring, brings up several important issues and reflections for those who deal directly with their care. Considering that
decisions must be based on the respect for human dignity and aim at the best interest of the children, we ask ourselves who should define their best interest and what part do their wishes, values and interests play in these decisions. The
discussions are multiple and involve relevant aspects including the child’s relationships, their dependence and vulnerability, and capacity for decision-making, considering their development. This article discusses the challenges for a respectful relationship to the child’s autonomy. The discussion is guided by the following questions: “In which ways can children
and adolescents have autonomy in health decisions?”; “How should conversations about the adequacy of health support be carried out with children and family members?”; “What part do the child or adolescent’s wishes, values and interests play
in decision-making?”, “Who is responsible for the best interest of the child and adolescent concerning health decisions?” The book and the movie adaptation The Children Act and the movie My Sister’s Keeper were also used for the discussion. These titles led to discussions about several issues with ethical implications, including the extent to which children and adolescents should be able to make decisions about their health, how to assess their capacity for autonomous decisionmaking, conflicts between family, health team, and patient, and when to adopt life support measures.
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