Informed Consent in Decision-Making in Pediatric Practice

Abstract

Informed consent should be seen as an essential part of health care practice; parental permission and childhood assent is an active process that engages patients, both adults and children, in their health care. Pediatric practice is unique in that developmental maturation allows, over time, for increasing inclusion of the child’s and adolescent’s opinion in medical decision-making in clinical practice and research. This technical report, which accompanies the policy statement “Informed Consent in Decision-Making in Pediatric Practice” was written to provide a broader background on the nature of informed consent, surrogate decision-making in pediatric practice, information on child and adolescent decision-making, and special issues in adolescent informed consent, assent, and refusal. It is anticipated that this information will help provide support for the recommendations included in the policy statement.

Please Test My Child for a Cancer Gene, but Don’t Tell Her

“…Nevertheless, clinicians, scholars, and policy makers recommend that older children and adolescents be involved in making decisions relating to their healthcare. 13 Such an approach is believed to strengthen the clinician/pediatric-patient relationship and improve children’s compliance with their treatment plan. It also recognizes the child as a moral agent and acknowledges children’s growing maturity and cognitive abilities for medical decision-making before age 18.…”

“…With regard to children ages 7–14 years like Karen, the American Academy of Pediatrics’ (AAP) stated policy is that the presumption of decision-making incapacity is rebuttable and that assent tailored to the individual child should be sought, unless the intervention is medically essential. 13 …”

What Do Clinicians Caring for Children Need to Know about Pediatric Medical Traumatic Stress and the Ethics of Trauma-Informed Approaches?

“…Children in the acute care setting commonly report feeling lack of control over what is happening to them [21,22], which increases the potential for a challenging medical event to be experienced as traumatic. The legal capacity to consent to treatment generally falls to a child's parents or guardians, who are the primary decision makers throughout the course of pediatric medical care [23]. Nevertheless, physicians can ensure that children are provided with developmentally appropriate information and involved (even informally) in assenting to care [23].…”

“…The legal capacity to consent to treatment generally falls to a child's parents or guardians, who are the primary decision makers throughout the course of pediatric medical care [23]. Nevertheless, physicians can ensure that children are provided with developmentally appropriate information and involved (even informally) in assenting to care [23]. Presenting opportunities for children to exercise some degree of control and providing choices (e.g., as to their position or their selection of a distracting activity) in the midst of painful or distressing symptoms or procedures can mitigate the traumatic nature of these experiences [24,25].…”

Meeting the goal of concurrent adolescent and adult licensure of HIV prevention and treatment strategies

“…In addition, given the range of adolescent maturity and decision-making abilities, consideration should be given to providing access to a suitable adult living with HIV who can provide support and advice. 25 There may be other suitable approaches to balancing the duty to protect the confidentiality of an adolescent at risk for or living with HIV with concerns about adolescent capacity, and potentially conflicting duties to parents and the institution. 26 …”