Respecting autonomy in young people

Abstract

Paediatricians have a duty to protect the life and health of their patients and to respect their autonomy. Usually, there will be no conflict between these duties. Both children and parents want effective care and agree to the medical interventions that that are most likely to provide it. However, when children refuse or resist such interventions, it may be unclear when the duty to protect trumps the duty to respect. This is because children may have differing levels of autonomy, sometimes making them competent to make medical decisions for themselves and at other times not. Further, there may be conflict between the children and their parents in such circumstances. Children may refuse treatments that parents desire or vice versa. Sometimes paediatricians may agree with the child in the face of legal powers of parental guardianship. At other times they may agree with the parents, facing the prospect of forcing treatment on an unwilling child with potentially devastating psychological consequences. This paper will explore this potential ethical and legal minefield by evaluating some practical clinical cases based on the experiences of the primary author. It provides a range of examples of these different types of conflicts, including especially problematic "hard cases" that concern the withdrawal of life-sustaining treatment and child protection. The goal of the article is not simply to morally and legally outline the boundaries of such tensions in paediatric care. It also provides concrete advice about how they should best be resolved in everyday clinical practice.

Respect for autonomy in the healthcare context: observations from a qualitative study of young adults with cerebral palsy

“…Likewise, there is recognition that factors accompanying psychological development may foster capacity in the adolescent and improve the skills required for making autonomous medical decisions. For instance, behaviours or actions that may foster the development of autonomy in adolescents include: obtaining assent from children and adolescents (Committee on Bioethics, American Academy of Pediatrics 1995), giving children and adolescents the opportunity to express 'hopes, fears, ideas and expectations' (Beach & Proops 2009), using small, less substantial decisions about care to promote autonomy in an incremental way (Beach & Proops 2009), and recognizing the role of experience and knowledge especially for adolescents with chronic illness (Harrison et al 1997;Piker 2011). Accordingly, better preparation to exercise full autonomy could be incorporated in paediatric-adult transition programmes in ways that are sensitive to the developing capacity of adolescents.…”

Ethics in child and adolescent psychiatric care: An international perspective

“…if parents want a therapy for the child but the child does not or if issues concerning other family members' behaviour arise during therapy, etc. (Beach & Proops, 2009;Koocher, 2008). Sometimes care-giver and child may differ in their wishes and motivation for treatment.…”

Balancing protection and respect in paediatrics

“…Others, sometimes called “child protectionists”, argue that too much emphasis has been placed on the concept of autonomy to the potential detriment of children 7. To provide a guide through such potentially troubled waters, Richard Beach and Rosalyn Props, consultant paediatricians at Norfolk and Norwich NHS Trust, have written an engaging paper (see page ) based on their personal experiences and provide practical advice on how best to proceed, especially in the face of morally and legally indeterminate “hard cases” 8. Few things can be more upsetting for doctors than feeling that they have failed a sick child.…”